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The Autistic Spectrum

Miscellaneous articles and information for anyone in the life of a person with Autism. 


 

The "Extreme Male Brain": An Explanation for Autism?

 

Teresa Foden

IAN Assistant Editor

 

Connie Anderson, Ph.D.

IAN Community Scientific Liaison

 

Kennedy Krieger Institute

Email: ian@kennedykrieger.org

 

Date First Published: February 23, 2010

 

Male symbol in yellow and blueWhy are autism spectrum disorders (ASDs) so much more common in boys than in girls? To answer this question, researchers are exploring how gender-based differences might contribute to a vulnerability to ASD in boys -- or to a buffer providing some degree of protection in girls. What factors make boys more likely to have an ASD? What takes place during development, perhaps even in the womb, which could result in more males than females later exhibiting autistic traits? One theory is that people with ASD have "an extreme male brain," and that this may be the result of exposure to high levels of fetal testosterone.

 

The Autism Spectrum: A Preponderance of Males

 

In many ways, males appear to be more vulnerable to life's hazards than females. For a variety of reasons, both biological and social, they are more prone to death or damage before birth, more likely to suffer accidents or fall victim to violence, and have a shorter average lifespan than females. 1 2  They are also more likely than females to have autism, pervasive developmental disorder not otherwise specified (PDD-NOS), Asperger's syndrome, or any other type of ASD. 3

 

In the first clinical account of autism in 1943, psychiatrist Leo Kanner noted that boys with the condition outnumbered girls by a ratio of 4 to 1. 4  Similarly, in 1944, when Hans Asperger described the syndrome that would come to bear his name, he initially found it only in boys. 5 The impression that there are far more boys with autism than girls, and that this is even more striking in Asperger syndrome, has not changed much in the years since. Recent studies continue to show that the ratio of boys to girls with autism is about 4 or 5 to 1, 6 7  while the ratio of boys to girls with Asperger's syndrome is between 6 and 11 to 1. 8 9

 

What no one has been able to discover yet is why.

 

Autistic Traits: Male Plus?

 

It is not just that there are more boys than girls with ASDs. Researchers have also noticed that there is something "male and then some" about the way individuals with ASD think, act, and cope. Asperger himself speculated that the characteristics he saw in his young patients could represent an "extreme variant of male intelligence."  10  More recently, Simon Baron-Cohen, a prominent autism researcher at Cambridge University, has proposed the extreme male brain theory of autism, which attempts to explain the remarkable similarities between traits generally associated with human "maleness" and traits associated with the autism spectrum. 11

 

What are these traits? For one thing, typically developing males tend to show strengths in mathematical and spatial reasoning and the ability to discriminate details from a complex whole. Compared with typically developing females, however, males tend to be at higher risk for language impairment and at a disadvantage on social-judgment tasks, measures of empathy and cooperation, and imaginary play during childhood. 12  Many of the traits associated with ASDs could be thought of as an extreme profile of "typical male" strengths and challenges. Where, on average, typical men may be good at detail-oriented processing, people with ASD may be incredibly good at perceiving detail...and impaired when it comes to seeing "the big picture." Where typical men may be less able than women to make social judgments or empathize with others, people with ASDs are literally disabled in these areas.

 

Baron-Cohen and colleagues have come up with a model for this idea which divides the way the brain works into two major dimensions: systemizing and empathizing.

 

Systemizing is defined as "the drive to analyze or construct systems" that "follow rules."  13  It also involves being able to predict the behavior of a system (as opposed to predicting or understanding the behavior of other people). 11 Males are, on average, more skilled at "systemizing" than females are. Think of mathematicians and engineers as good systemizers.

 

Empathizing is defined as "the drive to identify another person's emotions and thoughts, and to respond to these with appropriate emotion." It also involves being able to predict the behavior of people. Females are, on average, more skilled at "empathizing" than males are. Think of therapists and teachers as good empathizers.

 

Please note: The gender differences being discussed are "overall average" differences. In other words, it is understood that there are individual men who are wonderful at empathizing and women who are fantastic at systemizing; there are intuitive male therapists and brilliant female mathematicians.

 

The extreme male brain theory, meanwhile, views people on the autism spectrum as hyper-systemizers: people who are extremely interested in and engaged with rule-bound non-human systems, whatever their level of functioning. 14  For someone with less cognitive ability, "hyper-systemizing" might translate into collecting buttons, stones, or some other objects and organizing them by type. For someone with a higher IQ, it might translate into a huge catalog of knowledge on a particular subject, like insects, astronomy, or history -- a subject that is endlessly thought about, talked about, and expanded upon. Routine would be one form of system, and disruptions to routine would be upsetting because they interfere with expectations of a rule-bound system. Rigidity, not flexibility, would be the rule.

 

Empathizing, on the other hand, would be impaired in individuals with ASD. Reading social cues, noticing what others are feeling (let alone figuring out how to respond appropriately), and making sense of social hierarchies would be very challenging -- even more challenging than it might be for the average male.

Fetal Testosterone: Support for the Extreme Male Brain Theory?

 

What might explain this tendency of people with ASD towards an extremely male style of thinking and coping with the world? Could factors that contribute to human "maleness," especially if intensified, be somehow associated with the development of ASD?

 

Baron-Cohen and colleagues hypothesized that high levels of fetal testosterone, a hormone that drives the development of male physical and cognitive characteristics, were involved. 15 After all, the differentiation of male vs. female begins at conception and continues through prenatal development and beyond. Could a high dose of fetal testosterone explain the "very male" cognitive and emotional profile of people with ASD, as well as the fact that so many more males have ASD compared with females?

 

Some key studies have been carried out to try to answer this question. In one, researchers found that girls who had been exposed to high levels of fetal testosterone in the womb due to a genetic disorder had a more male-typical play style. 16  In another, using amniotic fluid that had been collected during pregnancy, researchers were able to demonstrate that the lower the level of fetal testosterone in the womb, the higher a child's ability to empathize as measured by eye contact, quality of peer relationships, and other factors 6 to 8 years later. 17

 

Finally, researchers explored whether there was any association between high fetal testosterone levels during pregnancy and autistic traits in children. Over 200 mothers who had had amniocentesis during pregnancy completed questionnaires about their child's behavior, including social, language, and repetitive-behavior traits common to ASDs. The researchers found that the higher the level of fetal testosterone during the pregnancy, the more likely the now 6-to-10-year-old child was to have some autistic characteristics. 15

 

Next Steps

 

The idea that people with ASD have an "extreme male brain," and that high fetal testosterone levels can cause this, makes an intriguing theory. This theory provides a framework for thinking about ASD in terms of "systemizing," which people with ASD excel at, and "empathizing," which they find challenging. It also provides an explanation for the fact that boys with ASD outnumber girls with ASD.

 

Still, so far researchers have not been able to test this theory working with people who actually have a diagnosed ASD, only those who have ASD-like traits. Baron-Cohen and his team are now following up with a new study which will test whether high levels of fetal testosterone are associated with an actual diagnosis of ASD. 18  Since ASD occurs only in about 1% of the population, the researchers will need a huge number of samples to test their idea, something they hope to achieve by using the Danish Biobank – a massive storehouse of biological samples. 19

 

Researchers are also interested in finding out if current levels of testosterone, as opposed to prenatal levels, play any role in ASDs. Is there some critical window of time when testosterone levels matter, or do they always matter? If there is a window, when is it? 15

 

At the same time, interest in oxytocin, another hormone, is growing. Some are theorizing that this hormone, which is associated with social memory and attachment, maternal behavior, and human bonding, may be associated with ASDs somehow. 20  There have even been some preliminary studies which show that oxytocin nasal spray may improve social communication and interaction in people with ASD. 21 22

 

There is reason to hope that an understanding of how specific hormones contribute to ASD may lead, with additional research and testing, to promising new treatments that address the core social deficits of ASD.

 

Related Resources

 

    * Find out what we're learning about the girls participating in the Interactive Autism Network: IAN Research Report #12 - December 2009: Girls with ASD.

    * Read A Girl's-Eye View: Detecting and Understanding Autism Spectrum Disorders in Females by researcher Shana Nichols, author of the book Girls Growing Up on the Autism Spectrum: What Parents and Professionals Should Know About the Pre-teen and Teenage Years.

    * For more on the extreme male brain theory, see the IAN page Cognitive Theories Explaining ASDs.

 

References

 

   1. Wells, J. C. (2000). Natural selection and sex differences in morbidity and mortality in early life. Journal of Theoretical Biology, 202(1), 65-76. View Abstract

   2. Kraemer, S. (2000). The fragile male. British Medical Journal, 321(7276), 1609-1612. View Abstract

   3. Interactive Autism Network. (2007). IAN Research Report #2 - July 2007. Retrieved February 22, 2010 

   4. Kanner, L. (1943). Autistic disturbances of affective contact. Nervous Child, 2, 217-250.

   5. The National Autistic Society. (2003). Autism: Why do more boys than girls develop it? Retrieved February 19, 2010.

   6. Fombonne, E. (2005). Epidemiological studies of pervasive developmental disorders. In F. R. Volkmar, R. Paul, A. Klin, & D. Cohen (Eds.), Handbook of autism and pervasive developmental disorders (3rd ed., Vol. 1, pp. 42-69). Hoboken, NJ: John Wiley & Sons, Inc.

   7. Scott, F. J., Baron-Cohen, S., Bolton, P., & Brayne, C. (2002). Brief report: Prevalence of autism spectrum conditions in children aged 5-11 years in Cambridgeshire, UK. Autism: The International Journal of Research and Practice, 6(3), 231-237. View Abstract

   8. Gillberg, C., Cederlund, M., Lamberg, K., & Zeijlon, L. (2006). Brief report: "The autism epidemic": The registered prevalence of autism in a Swedish urban area. Journal of Autism and Developmental Disorders, 36(3), 429-429-435. View Abstract

   9. Tantam, D. (1991). Asperger syndrome in adulthood. In Uta Frith (Ed.), Autism and Asperger syndrome, (pp. 147-183). Cambridge, UK: University Press.

  10. Wing, L. (1981). Sex ratios in early childhood autism and related conditions. Psychiatry Research, 5, 129-137. View Abstract

  11. Baron-Cohen, S. (2002). The extreme male brain theory of autism. Trends in Cognitive Sciences, 6(6), 248-254. View Abstract

  12. Baron-Cohen, S. (1999). The extreme-male-brain theory of autism. In H. Tager-Flusberg (Ed.), Neurodevelopmental disorders. Cambridge, MA: The MIT Press.

  13. Baron-Cohen, S. (2009). Autism: The empathizing-systemizing (E-S) theory. The Year in Cognitive Neuroscience, 1156, 68-80. View Abstract

  14. Baron-Cohen, S. (2006). Two new theories of autism: Hyper-systemizing and assortative mating. Archives of Disease in Childhood, 91(1), 2-5. View Abstract

  15. Auyeung, B., Baron-Cohen, S., Ashwin, E., Knickmeyer, R., Taylor, K., & Hackett, G. (2009). Fetal testosterone and autistic traits. British Journal of Psychology, 100, 1-22. View Abstract

  16. Auyeung B, Baron-Cohen S., Ashwin E., Knickmeyer R., Taylor K., Hackett G., & Hines M. (2009). Fetal testosterone predicts sexually differentiated childhood behavior in girls and boys. Psychological Science, 20(2), 144-148. View Abstract

  17. Chapman, E., Baron-Cohen, S., Auyeung, B., Knickmeyer, R., Taylor, K., & Hackett, G. (2006). Fetal testosterone and empathy: Evidence from the empathy quotient (EQ) and the "reading the mind in the eyes" test. Social Neuroscience, 1(2), 135-148. View Abstract

  18. Baron-Cohen, S., Auyeung, B., Ashwin, E., & Knickmeyer, R. (2009). Author response: Fetal testosterone and autistic traits: A response to three fascinating commentaries. British Journal of Psychology, 100, 39-47.

  19. Tachibana, C. (2010, January 15). Career advice: Denmark: Making global connections. Retrieved from the American Association for the Advancement of Science February 19, 2010.

  20. Lee, H. J., Macbeth, A. H., Pagani, J. H., & Young, W. S. (2009). Oxytocin: The great facilitator of life. Progress in Neurobiology, 88(2), 127-151. View Abstract

  21. Guastella, A. J., Einfeld, S. L., Gray, K. M., Rinehart, N. J., Tonge, B. J., Lambert, T. J., & Hickie I. B. (in press). Intranasal oxytocin improves emotion recognition for youth with autism spectrum disorders. Biological Psychiatry.

  22. Andaria, E.,  Duhamela, J. R., Zallab, T., Herbrechtb, E., Leboyerb, M., & Sirigua, A. (in press). Promoting social behavior with oxytocin in high functioning autism spectrum  disorders.

 

 

http://www.iancommunity.org/cs/understanding_research/extreme_male_brain

 

 

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DIAGNOSIS: Autism WHAT FAMILIES CAN DO

Patricia S. Lemer

Skylar is a darling three year old, conceived after eight infertile years, and absolutely adored by his parents. His mother experienced some problems during pregnancy, but thankfully, her doctors pinpointed her low thyroid condition and were able to bring her fibromyalgia under control. Skylar's birth, however, was no easier than the pregnancy: his breech presentation required careful maneuvering. That first year of life presented its challenges, too: colic, reflux, and thrush. His constant screaming following his MMR vaccine was worrisome. Then came the repeated ear infections.

Finally, after endless rounds of antibiotics and several sets of ear tubes, Skylar seemed to thrive. He never crawled but walked so early that his parents were sure he was smart. He began picking up words quickly. Lately, however, Skylar has not added any words to his vocabulary. Sometimes he flaps his fingers in front of his eyes. Grandma noticed, when she visited over Thanksgiving, that he didn't always look at her. His parents are concerned.

"YOUR CHILD IS AUTISTIC"

Some families can recall the date and event when their toddlers went off-track, and even have home videos to document the change. For other families, like Skylar's, it is a more gradual process. As their anxiety increased, Skylar's parents sought expert advice. The diagnosis: it could be either pervasive developmental disorder (PDD) or autism.

"That is impossible," Skylar's parents thought, going through the sequential steps of denial, anger, and bargaining. Maybe he was just having a bad day when he went to see the specialist.

One reason that diagnosing autism is so confusing is that there are no physiological indicators, as there are for diabetes or cancer. Doctors may not always find the genetic markers they do with other disorders, because autism has many possible causes. It is only diagnosed when a child exhibits certain behavioral and psychological symptoms.

Other symptoms, like Skylar's, are immunological, dermatological, digestive, sensory, neurological, respiratory, cognitive, psychological, and developmental. If the symptoms are mild, a child might be diagnosed with attention deficit disorder. Moderate symptoms might result in a diagnosis of Asperger's syndrome. If severe, the diagnosis would be PDD or autism. These diagnoses make up what is known as the autism spectrum of disorders. (See Box 1)

The autism spectrum includes many labels: attention deficit disorder (ADD and ADHD), Angelman's, Asperger's, dyslexia, hyperlexia, Klinefelter's, Landau-Kleffner, obsessive compulsive disorder (OCD), PDD, Rett's, Tourette's, and autism. Children on the autism spectrum have an important commonality: a huge "total load."

Total load theory describes the cumulative effect of the individual assaults of each problem on the body as a whole. (See Box 2)

The cluster of symptoms that eventually leads to a diagnosis of autism arises when many systems of the body are stressed to their limits. Each child has a unique personal load limit, as does a bridge. When that limit is exceeded, a very complex constellation of problems results. Of course, not all children with these symptoms become autistic, but the more symptoms present, the more likely the child will be diagnosed with one of the labels on the continuum.

WHAT CAN A FAMILY DO?

After anger, bargaining, and depression subsided, Skylar's parents accepted his diagnosis. They then had to make some difficult choices. His doctors suggested traditional treatments, including medications, behavioral management programs, and a special school that provides intense early intervention in language, motor, and psychological areas. Undoubtedly, these treatments could help Skylar progress.

The problem with these usual interventions is that they focus on ameliorating symptoms rather than addressing the underlying causes of autism. Medications can alleviate behavioral and attentional symptoms, but often with undesirable side effects. Caring special education teachers offer individualized programming which may fail to allow the child's own sensory systems to learn how to modulate and integrate information. The lack of typical peers can also be problematic. Counseling programs help parents cope with issues such as picky eating and sleep problems but, again, don't speak to their causes.

Fortunately, exciting new treatments are currently receiving recognition. They focus on reversing problems related to reduced immune system dysfunction, overexposure to antibiotics and toxins, birth trauma, and reactions to immunizations. And now the literature is reporting children who are recovering from autism and PDD.

If you have a child with autism, like Skylar's parents, consider trying the following alternative therapies.

Dietary Modification -- Although initially challenging, efforts here alone can increase relatedness, attention, eye contact, and use of language -- immediately and markedly. That is what happened with Skylar.

Feed your child a diet that is:

* unrefined, varied, and free of artificial colors, flavors, additives, and naturally occurring salicylates (apple juice, because it contains salicylates, is to be avoided).

* gluten- and casein-free. If a child is eating a diet consisting primarily of wheat and dairy products, probably one or both of these must also be removed. Wheat gluten and casein from dairy products chemically form an opiate which puts some children into autistic-like states. Blood tests are available to see if this is the case with an individual child. (See Resources)

* yeast- , mold- , and sugar-free.

All of these non-food items and problematic foods increase the toxic load on bodily systems. In addition, the use of filtered water and natural household products is recommended.

Nutritional Supplementation -- Nutritional aids are essential to close the gap between what these youngsters eat and what their bodies need. Children like Skylar need more nutrients than typical children because of poor absorption, self-restricted diets, impaired ability to detoxify environmental chemicals and pollutants, and/or inherited nutrient deficiencies. Some supplements that have been found particularly helpful are vitamins A, B-6, calcium, and magnesium. Others showing promise are:

* Essential fatty acids, taken as the oils of evening primrose, cod-liver oil, or flaxseed;

* Amino acids, such as tryptophan, secretin, and GABA, all necessary for complete digestion;

* Antifungals and probiotics, such as Nystatin, Diflucan, and acidopholous, needed to reestablish intestinal integrity and to combat yeast overgrowth;

* Miscellaneous supplements, such as digestive enzymes and herbs that can also increase digestive function.

Healthcare providers can suggest customized formulas designed to fit a child's unique nutritional needs.

Homeopathy -- Many modern healthcare practitioners are using this 200-year-old approach to address health imbalances in children on the autism spectrum. Practitioners use natural substances that have the ability to cause symptoms in a healthy person, but cure the same symptoms in a sick person, by stimulating the body's own ability to heal itself. With this method, like cures like, whereas in traditional medicine, the opposite approach is used.

Immunotherapy -- Vaccine-induced autism is a tragic outcome of today's modern medicine. While the world has been saved from epidemics of dread diseases, some of today's children are being sacrificed. The discovery of measles virus in the ulcerated guts of children with autism has led to a variety of treatments that release children from the ravages of continuously high titers even years after the initial vaccine. For additional information on this treatment, contact the National Vaccine Information Center (NVIC). (See Resources)

Treatments That Affect Sensory Processing -- Children with autism process what they touch, smell, taste, hear, or see inefficiently. The sense of balance, located in the inner ear, may also be disturbed, due to the repeated ear infections many of these children experienced as babies. The balance system is essential to efficient processing of sound and movement, as well as vision and language. Remediation of impaired sensory processing is essential to lessen autistic symptoms. (See Resources for trained specialists in each area.)

* Sensory Integration Therapy, provided by specially trained occupational or physical therapists, enhances the child's ability to respond appropriately to all types of sensory input. Therapy consists of guided activities that challenge the body to make efficient, organized responses. A child is then able to pay attention, relate, sit still, organize language, and focus better.

* Auditory Integration Training (AIT) normalizes the way children with autism process sound. Some children are oversensitive, while others are undersensitive. The distorted messages sent to the brain impair the ability to focus on and give meaning to what is heard. Several types of AIT are available from specially trained practitioners. All utilize electronic equipment, headphones, and filtered music. This intervention stimulates the balance, movement, and auditory systems, as well as eye movements and digestion.

* Vision Therapy (VT) normalizes the way children with autism focus on and give meaning to what they see. Vision is not the same as eyesight.

It is a set of abilities, learned from birth, and acquired in tandem with movement. Having both eyes move together, align, fixate, and focus as a team enhances the ability to interpret and understand visual information. Skylar is one of 30 percent of children with autism whose eyes do not work together. Once this problem was remedied, his relatedness improved.

Many symptoms of autism have visual components. Visual dysfunction may result in poor eye contact and attention. A lack of binocularity could result in other autistic symptoms. Specially trained optometrists can prescribe a program of movement activities and use lenses and prisms to teach the eyes how to work more efficiently. Vision Therapy activities must be individualized for each child.

* Educational Kinesiology (E-K), also known as Brain Gym, enhances sensory function by using specially designed movement activities. (See For More Information)

* The Son-Rise Program is an intensive therapy based on a family's loving, trusting, respectful attitude. It encourages parents to follow a child's actions, while simultaneously directing him into an expanded world. (See Box 3)

Structural Therapies -- Many children, like Skylar, experienced a traumatic birth. Osteopathic physicians, health professionals trained in craniosacral techniques, massage therapists, chiropractors, and other bodyworkers can provide precise, gentle, restorative manipulative treatment. If structural dysfunction resulting from birth trauma is corrected early, neurological development can progress satisfactorily. Then, motor, sensory-motor, language, social-emotional, cognitive, and behavioral problems can be averted by establishing or restoring optimal anatomic-physiologic integrity. Structural therapies can particularly benefit children who have chronic ear infections.

MOVING TOWARD HOPE

Denial and depression have turned to hope for children diagnosed with autism or PDD. Parents are empowering each other to search for and discover remedies never before considered. Regional and national conferences abound with a focus on causes, not symptoms. Internet chat rooms and listservs allow the instant exchange of information and news of promising treatments.

Recovery from autism and PDD is now a possibility. Skylar will probably attend a regular preschool, not one for children with special needs. As his health improves, cognitive and social-emotional function will, too. His parents may have to change their diets and shop differently. Their lives will be full of therapy appointments and consultations with educational and health specialists. But what could be more satisfying than saving their child?

Box 1

AUTISM SPECTRUM OF DISORDERS

ADD     
                  ADHD      Dyslexia    
                  Asperger's    Hyperlexia     
                  PDD     Autism
Less Severe                    
                  More Severe                    
                  Most Severe

Box 2

Risk Factors for Autism Spectrum Disorders

1. Traumatic birth

2. Allergies in the family

3. Dark circles under the eyes ("allergic shiners")

4. Red ears or apple cheeks

5. Fibromyalgia, chronic fatigue, or low thyroid in the mother

6. Recurrent ear, sinus, or strep infections

7. Chronic, unexplained fevers

8. Respiratory problems, including asthma and bronchitis

9. Skin problems, including eczema and poor color

10. Digestive problems, including constipation, chronic diarrhea, or reflux

11. History of an extended immunization reaction

12. Sudden decline in function between 15 and 30 months

13. Yeast infections, such as thrush

14. Hyperactivity

15. Agitated sleep

16. Wild swings in mood and function

17. Self-injurious or violent behaviors

18. Regressive behavior after eating food with additives

19. Sensitivity to dyes, chemicals, perfumes, or medications

20. Craving for apple juice

Box 3

Son-Rise

The Option Institute's Son-Rise Program teaches both parents and professionals how to design and implement parent-directed, child-centered, home-based programs for their children with autism. Son-Rise emphasizes the importance of creating a relationship with the child as a basis for teaching skills. A unique aspect of Son-Rise is the focus placed on attitude -- a nonjudgmental and loving attitude is the foundation of the program and considered essential to facilitate the child's development.

The Options Institute was founded by Barry Neil Kaufman and Samharia Lyte Kaufman, who have spent over 25 years "rebirthing" their son Raun from supposedly "incurable" autism. At 18 months, Raun was mute, totally withdrawn from human contact, self-stimulating, and tested below 30 on the IQ scale. Barry Neil and Samharia worked with their son 12 hours a day, seven days a week, for over three years. At the end of that time, Raun was not only cured of autism, but he had evolved into a highly verbal, extroverted, loving, and brilliant young boy who demonstrated a near-genius IQ and bore no traces of his earlier condition. Raun recently graduated from an Ivy League university with a degree in biomedical ethics, and is now a teacher and spokesperson for the Options Institute.

The Kaufmans wanted to help other families help their children, and so in 1983 they founded the Options Institute, which offers in-depth programs for families. In addition to an intensive, one-week program, advanced training programs, and start-up programs, Son-Rise conducts other support services for families who have attended one of their programs. The Son-Rise Program has been disseminated throughout the US and across the world.

Barry Neil Kaufman is the author of nine books, including Son-Rise and Son-Rise: The Miracle Continues. Deepak Chopra has said the Kaufmans' work is "the science of love, compassion, and insight which will transform the world." Coretta Scott King says their work "affirms the unlimited potential of the human spirit." For more information about the Son-Rise Program, contact the Options Institute at 2080 S. Undermountain Road, Sheffield, MA 01257; 413-229-2100; or visit their website at www.option.org or e-mail them at sonrise@option.org.

-- Rozella Kennedy

Source: http://www.findarticles.com/p/articles/mi_m0838/is_2000_May-June/ai_62141698

 

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An Aspie's Advice to Parents of Aspie Kids

By Frank Klein

Note:  This article was written when this web site was entitled "Aspie Advocacy."  When I realized that I am more properly HFA (high-functioning autistic) than  aspie, despite my many similarities to aspies, I decided that a bifurcated view of AS and autism did not make sense.  Thus, I changed the name of the site, as well as the editorial "slant," to reflect the unified nature of the spectrum as a whole.  That is why I recently changed the title in the link to this article.  However, for the moment, I am leaving the article as it was written originally.  Keep in mind that when I say "aspie" in this article, I refer to all people on the higher-functioning end of the spectrum, regardless of which diagnosis they may have.

Before I begin, let me give you a little bit of background so you know exactly what my "qualifications" are (and are not).  My name is Frank, and I am a thirty-year old aspie male.  I do not have kids, and at this time I do not plan to have any.  Despite my non-parent status, though, I think I have some insight to offer to parents of AS children.  In the year or so that I have known of AS, I have learned quite a bit on that topic, and I have had the privilege of communicating with many other aspies online.  Some of them are living relatively normal lives, with a spouse and kids, and some are living on SSI or other forms of welfare, unable (or convinced thy are unable) to work.  I fall somewhere in the middle... I am employed, but as someone that probably would qualify for Mensa, I am very much underemployed.  The job I do is a relatively low-stress, low-responsibility job that I can do half-asleep, and that is the reason I am able to deal with the strain.

Like most (if not nearly all) aspies my age, I was never diagnosed as being on the autistic spectrum as a child.  Until very recently, everyone thought that autistics were uncommunicative, mentally retarded lost souls that just sat and rocked all day.  That's the stereotype for low-functioning autistics, which are the most common  of the classic Kanner-type autistics.  Certainly no one would diagnose a bright, talkative child as being autistic... and the more specific diagnosis of Asperger's Syndrome did not gain notoriety in the western world until around 1990.  AS was not included in the DSM (psychiatrist's diagnostic manual) until 1994.  Thus, aspies like me grew up with no special consideration at all, and with no AS-related treatment or counseling.

I always knew I was different, since about the third grade.  Starting in the seventh grade, I began to be the target for more adolescent abuse than most people would ever care to imagine.  I never knew why I was always singled-out as a target... I really tried to be nice to everyone, and it just did not work.  That ostracism tore apart my self-esteem, and by the time I graduated from high school, I had adopted the idea that I was a worthless piece of refuse.  Those years are such a bad time to have this sort of thing happen... it is right at that time when kids are trying to fit in and find their place in the group.  Well, it is not surprising that I suffered through the better part of a decade in a deep depression.  Although I still struggle with issues of self-confidence and motivation (I still have no ambition at all), the depression is finally under control (at least as far as the dysphoria is concerned) due to the wonders of modern pharmaceuticals.  It is this experience that has allowed me to see something that is really quite obvious, but somehow rarely mentioned: Depression is THE primary disability for aspies.

There are a lot of aspies that say they cannot work, and I don't doubt that to be true.  Every single one of them I have spoken to (well, typed to) has also been very depressed.  Depression is a very real, very powerful disability that can and does make it impossible for so-affected individuals to function in any meaningful manner.  It's too easy to blame the AS itself and to overlook the role of the depression in making daily life impossible.  The AS causes ostracism, which causes a loss of self-esteem, which causes depression, which causes disability.  Cut off the depression and the disability goes away too.  It's hard, but it has to be done.  And if my own experience is any indication, the recovering depressive will find that he is more resistant to the kind of abuse that caused the depression in the first place.  You really do come out of it stronger.  Even so, it is an uphill struggle, and the after-effects can last a long time... maybe a lifetime.  It's a much better idea to prevent it in the first place.

Now I am not going to try to tell anyone that it will be easy for a non-depressed aspie in the work world.  It won't be.  Every office has the whole office-politics thing, and aspies by nature do not play that game.  We always end up being the losers in social-positioning games.  Further, we don't relate to others the way that we are expected.  There's such a big emphasis on the "team player" stuff, and we can never measure up to NTs in that regard.  I will admit that it is harder for us, and that there are less options.  We will, by and large, be at low levels for the duration of employment at any given site.  This is NOT because we are disabled, impaired, or in any way incapable.  It's because it is an NT world, and they make the rules to suit themselves, and almost no one is going to give us a break because we are different.  On the other hand, we are natural innovators, and we make great entrepreneurs.  We have to be realistic in our expectations of what we will and will not be able to do.

Now, let me dig into the causes of depression for aspies.  Well, obviously, anything that causes a normal kid to become depressed can do the same to an aspie kid.  That does not explain, though, the near 100% incidence of depression in aspies.  In a nutshell, aspies are depressed because they believe that they are defective people... unwanted misfits that people wish would go away.  This certainly was the case for me!  There are only so many times you can be told that you are worthless garbage before you begin to believe it.  After all, could all of those people be wrong?  (Answer: YES!)

From what I understand, my own experience is absolutely typical of aspie boys in regular schools.  It starts in the seventh grade, because that is the first year that the structure and control of the "one teacher all day" class environment is dumped in favor of the "change classes every 45 minutes" pattern of middle/jr. high and high school.  There are literally hundreds of opportunities for mean kids to attack their classmates in a single school day, and they get away with it 99% of the time.  I wish I could suggest an easy way to end the abuse, but I don't know that there is one.  The school officials will NOT want to help you... oh, sure, they'll give lip service... "We don't tolerate abuse at all..." but when the rubber hits the road, it is all talk.  Encouraging your unpopular child to report abuse to school authorities is a bad idea, because the bullies just hate the "rat" that much more, and the abuse gets worse.  Trust me; I've been there.

The only thing I can offer is to teach the kid to defend himself, and to ignore the rules against self-defense.  In my school, the bully and the victim were both punished equally if the victim tried to defend himself.  I knew this, and I followed the rules.  I just stood there and took my beatings as the school officials pretended they did not notice ("Boys will be boys," they say... "They have to learn to settle their own differences."  That's what they are thinking as they stand there and let bullies ruin your aspie kid's life.)  I am truly sorry that I have nothing better to offer than that, but a mainstream school is just going to remain a hostile environment for autistic kids of any flavor.  It's worse if your child is small or uncoordinated, which make effective self-defense harder, if not impossible.  Home-schooling is a good idea, if you're up to the challenge.

Bullies are not the only source of depression for aspies.  Unfortunately, the other is much more insidious, and the damage may be more pervasive.  It's the psychiatrist that you think is helping your kid!  Most of the psychiatric industry operates from an assumption that normal is good and everything else is bad, and that everything else should be eliminated.  They use words like "dysfunction" and "impairment" to talk about your child's aspie traits.  Rarely do they focus on the good points... and there are a lot of reasons to be happy you have AS.  You would never know that from the way that most shrinks talk, though.  I am not saying that all of them are bad, but you have to be aware that the likelihood is high that the doctor can make things worse as he tries to help.

AS and other forms of autism cannot be cured, and even if they could, the person being "fixed" would be gone.  There is no normal person inside the aspie, waiting to be set free.  The aspie characteristics go all the way to the core.  It can't be stripped away.  What good does it do to have a doctor make your child hate his autistic condition when there is nothing that can be done about it?  This certainly is not the intent of the medical community, but it happens anyway, and with alarming frequency.  When a person hates the fact that he is autistic, he hates what he is and who he is.  That's not a recipe for a good life!  There is so much that is good about AS, but so many people just refuse to see that. If your child's therapist or psychiatrist is one of them, find another.

There are some treatments designed to help aspie kids fit in, and I do not hold a high opinion of them.  They basically teach the kids to suppress their natural selves, and to act like the NT that everyone wishes that they were.  I've talked to a number of aspies that live behind such a facade, and they tell me that it is very stressful and demeaning.  Nothing like having to hide who you really are all day, every day, right?  Anyone want to guess whether these kids start to think that their natural autistic state is bad and shameful?  These are not going to be happy kids.  They'll be self-conscious, living behind a lie, afraid to show who they really are.  It's a bad deal.

Now do not get me wrong... I am not against teaching aspies and auties some simple "tools" to deal with living in an NT world, but it MUST be made clear that these are just tools to deal with having to live in a hostile world in which aspies are seriously outnumbered, and NEVER should the child be allowed to get the idea that being himself is bad, shameful, or unacceptable.  We (aspies) are different, NOT bad, NOT inferior, NOT broken.  That message has to be repeated... make sure it gets through.  Treat AS as a gift, not a disability.  If you don't know what the good points of AS are, please have a look at some of my other articles.  If your child is seeing a psychiatrist, be sure that the doctor only intends to help the child deal with living in a world that is not his own, and not to try to "fix" the child in any way.  Being a "fish out of water" is hard enough!  Please humor me even if you yourself wish your child could be "fixed" and made normal... it is not going to happen, and if you try, you will make things worse.  People can and do live happily with AS, but no one lives happily with a sense of self-loathing.

That brings me to some suggestions as to what you should, and should not, do.  Don't try to suppress your child's autistic behavior... things like like pacing, flapping hands, rocking, obsessing on one thing, et cetera.  In a calm, rational, logical manner, you can explain why the child should curb such behaviors when in public places, but don't punish the child if he slips and does something embarrassing.  He really is not trying to embarrass you!  He is far too wrapped up in his own needs to even consider that you have feelings too.  Do allow your child to have "alone" time each day, if he so desires, and do allow him to stim when he needs to.  These are natural, real needs for autistic people, and stifling them will make your child seek more extreme ways to release stress.

Aspie kids, by the way, respond best if you tell them exactly why they must, or must not, do certain things.  Be specific with your reasons, and make them as concrete as possible.  The perennial favorite "Why? Because I said so" is not likely to work.  That may work on NT kids (although not always that well) that understand social hierarchies, but aspie kids are more logical, and do not respond as well to pure domination.  Yelling is even less likely to work... it is likely to put the kid in overload, or even cause a meltdown.  Calm and rational is the order of the day.  Very often, you will find that your child's "rebellious" or "bad" behavior is not motivated by any sort of malice at all!  It might just be the autistic child's natural way.  Remember, your ways are just as bizarre and unusual to him as his are to you... but he does not have the benefit of your years of life experience.

In short, and I repeat this point to emphasize its importance, you really need to be careful that the aspie kid is never given the impression that there is anything wrong with having AS.  Not from his peers, not from his doctors, not from you or other relatives.  Jealously guard the notion that AS is a good thing, and that most people just do not understand.  If the child can grow up with self-image intact, he will be much better able to deal with the stresses of real life.  Yes, it is true, the kid does need to learn how to deal with the world at some point, but that time is not until the mid-20s at the earliest, IMO, for an aspie.  No 18-year old is really mature enough to deal with life, but an aspie does not usually reach a similar level of maturity until about 25.

I cannot overstress how easy it is for an aspie kid to lose self-esteem and get depressed.   It is much easier for aspies to get depressed than NTs, and look how many depressed NT kids there are.  That depression is the cause of most of the inability to deal with life that so many aspies display.  And it sure makes more sense to prevent the depression than to try to cure it later!  It's a very real concern, and it is almost universal among aspies. 

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HOLIDAY LETTER TO RELATIVES TO PROVIDE INFORMATION ABOUT YOUR CHILD AND AUTISM
 
This was written for the purpose of it being sent to relatives, friends, and hosts of holiday gatherings that might need a crash course in what to expect from their guest with autism. This letter is written as if the autistic individual person is writing it personally. ~ Author, Viki Gayhardt
 
Dear Family and Friends:
 
I understand that we will be visiting each other for the holidays this year! Sometimes these visits can be very hard for me, but here is some information that might help our visit to be more successful.
 
As you probably know, a hidden disability called autism, or what some people refer to as a Pervasive Developmental Disorder (PDD), challenges me. Autism/PDD is a neurodevelopment disorder, which makes it hard for me to understand the environment around me. I have barriers in my brain that you can't see, but which make it difficult for me to adapt to my surroundings.
 
Thanksgiving & Christmas is one of the roughest holidays for me. With large crowds and holiday shopping it can be very overwhelming, even a bit scary. When planning a party remember that with my over sensitive hearing and eye sight, Christmas trees and holiday smells can cause me mild to severe pain or discomfort. If the noises are impossible to control a personal stereo with headphones set to a safe level for children may help drown out background noise and ease my discomfort.
 
Sometimes I may seem rude and abrupt, but it is only that because I have to try so hard to understand people and at the same time, make myself understood. People with autism have different abilities: some may not speak, some write beautiful poetry, others are whizzes in math (Albert Einstein was thought to be autistic), or may have difficulty making friends. We are all different and need various degrees of support.
 
Sometimes when I am touched unexpectedly, it might feel painful and make me want to run away. I get easily frustrated too. Being with lots of other people is like standing next to a moving freight train and trying to decide how and when to jump aboard. I feel frightened and confused a lot of the time. This is why I need to have things the same as much as possible. Once I learn how things happen, I can get by OK. But if something, anything, changes, then I have to relearn the situation all over again! It is very hard.
 
When you try to talk to me, I often can't understand what you say because there is a lot of distraction around. I have to concentrate very hard to hear and understand one thing at a time. You might think I am ignoring you - I am not. Rather, I am hearing everything and not knowing what is most important to respond to.Holidays are exceptionally hard because there are so many different people, places, and things going on that are out of my ordinary realm. This may be fun and adventurous for most people, but for me, it's very hard work and can be extremely stressful. I often have to get away from all the commotion to calm down. It would be great if you had a private place set up to where I could retreat.
 
If I cannot sit at the meal table, do not think I am misbehaving or that my parents have no control over me. Sitting in one place for even five minutes is often impossible for me. I feel so antsy and overwhelmed by all the smells, sounds, and people--I just have to get up and move about. Please don't hold up your meal for me--go on without me, and my parents will handle the situation the best way they know how.
 
Eating in general is hard for me. If you understand that autism is a sensory processing disorder, it's no wonder eating is a problem! Think of all the senses involved with eating. Sight, smell, taste, touch, AND all the complicated mechanics that are involved. Chewing and swallowing is something that a lot of people with autism have trouble with. I am not being picky-I literally cannot eat certain foods as my sensory system and/or oral motor coordination is impaired. Don't be disappointed if Mom hasn't dressed me in starch and bows. It's because she knows how much stiff and frilly clothes can drive me buggy! I have to feel comfortable in my clothes or I will just be miserable. When I go to someone else's house, I may appear bossy and controlling. In a sense, I am being controlling, because that is how I try to fit into the world around me (which is so hard to figure out!) Things have to be done in a way I am familiar with or else I might get confused and frustrated. It doesn't mean you have to change the way you are doing things--just please be patient with me, and understanding of how I have to cope.
 
Mom and Dad have no control over how my autism makes me feel inside. People with autism often have little things that they do to help themselves feel more comfortable. The grown ups call it "self regulation," or "stimming'. I might rock, hum, flick my fingers, or any number of different things. I am not trying to be disruptive or weird. Again, I am doing what I have to do for my brain to adapt to  your world.
 
Sometimes I cannot stop myself from talking, singing, or doing an activity I enjoy. The grown-ups call this "perseverating" which is kind-a-like self- regulation or stimming. I do this only because I have found something to occupy myself that makes me feel comfortable. Perseverative behaviors are good to a certain degree because they help me calm down.
 
Please be respectful to my Mom and Dad if they let me "stim" for a while as they know me best and what helps to calm me. Remember that my Mom and Dad have to watch me much more closely than the average child. This is for my own safety, and preservation of your possessions. It hurts my parents' feelings to be criticized for being over protective, or condemned for not watching me close enough. They are human and have been given an assignment intended for saints. My parents are good people and need your support.
 
Holidays are filled with sights, sounds, and smells.  The average household is turned into a busy, frantic, festive place. Remember that this may be fun for you, but it's very hard work for me to conform. If I fall apart or act out in a way that you consider socially inappropriate, please remember that I don't possess the neurological system that is required to follow some social rules. I am a unique person--an interesting person. I will find my place at this celebration that is comfortable for us all, as long as you'll try to view the world through my eyes!
 
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The World I Want To Live In by Amanda Baggs, Autistic

This is a terrifying world to live in, if you, like me, are autistic right now.

So-called autism experts write papers about us, detailing all of the dysfunctions and deficits we are supposed to have. Doctors recommend that we be medicated, confined, or subjected to behavior modification therapy, all with the goal of making us less expensive, more managable, and less autistic-looking. Genetic research is carried out to see if we can be eliminated or prevented.

Parents write messages on the Internet saying they wish they had a normal child -- one who speaks more "normally", or has more "normal" social relations, or who doesn't do such "odd" things as flapping hands, rocking, or lining up toys.

We are portrayed as something disordered that needs fixing, some tragedy that deserves mourning, some sort of monsters who came into our parents' lives and ruined them. We are portrayed as lacking such "human" qualities as empathy, compassion, and love. We are portrayed as dysfunctional, impaired, and damaged. People spend vast amounts of money to try to remove harmless traits that are common and normal, if you happen to be autistic.

The depth of pain that this causes an autistic reader is inexpressible. It is a deep denial of who we are, and a rejection by the same people who say they love us and want to help us. It effectively tells us, "You do not deserve to exist. Your existence causes pain. You should be someone different."

Parents are portrayed as some sort of heroes for dealing with us, and we are not portrayed as any sort of heroes unless we emulate normality, and confirm the current theories about autism. At that point, we are paraded around as having "recovered" from autism. I think it is heroic for an autistic to survive into adulthood, subjected to daily bombardment from an incomprehensible world that does not accept autistics. It is heroic for an autistic to exist in this world at all.

This is a world where autism is considered a disorder, and autistics are expected to submit to being "repaired". This is a world where autistics are subjected to abuse, ridicule, and punishment for being who we are. This is a world where autistics are given dangerous psychiatric drugs, and treatments which attempt to force neurotypical behavior on autistics. This is a world where autistics who manage to mimic neurotypical behavior enough to "get by in the world" are often plagued by deep emotional and self-image problems because of the discrepancy between who they are and what they appear to be. This is a world where autistics are considered, and treated, as something less than human, and are denied our basic human rights. This is a world where autistics are punished every day for being real, and rewarded for being false. This is not the world I want to live in.

I want to live in a world where it is okay, even admirable, to be autistic. I want to live in a world where autism is known to be the unique and beautiful thing that it is. I want to live in a world where I can be sure that autistics will be loved and respected as who we are, not drugged or forced to behave as something we are not. I want to live in a world where I can say "I am autistic" and not be expected to be a bundle of abnormalities and deficits. I want the word "Autism" to provoke not a mental defective or something that needs "fixing", but an image of a wonderful and unique person with a wonderful and unique way of being and experiencing the world. I want to live in a world where autistics are celebrated, not degraded.

I want to stop being afraid for all of the autistics who have brain damage or impaired cognitive functioning because of medications that they should have never been given in the first place. I want to stop being afraid for all of the autistics who are told effectively, "Who you are does not exist" or "Who you are is not good enough", and forced to emulate neurotypical behavior "to get on in the world". I want to stop being afraid for all of the autistics who are forced to live in institutions or on the streets because of an inability to "get on in the world". I want to stop being afraid for all of the autistics who are arrested for "bizarre" or "suspicious" behavior, or for failure to communicate. I want to stop being afraid for all of the autistics who are abused, taken advantage of, and discriminated against, for being autistic, and who are denied the help they need to survive. I want to stop being afraid that these things will happen to me, especially because most of them already have.

I want autistics to be told, "It is good to be autistic." I want the choices, boundaries, brains, and emotions of autistics to be respected. I want parents, upon finding out their child is autistic, to be as joyful as I would be to have another autistic in the world. I want to see parents and teachers learning the delight and beauty of autism. I want doctors and scientists to stop theorizing about what is wrong with autistics, and start theorizing about what is so right with autistics that there is this whole other kind of unique person in the world. I want those autistics who are incapable of working to still be able to live a dignified life the way they want to live it. I want autistics to have access to the help they may need to communicate, to understand things, and to live in the world. I want autistics to always have access to the information that they are not the only one like them in the world. I want autistics to be raised to be proud and confident that who they are is unique and beautiful.

That is the world I want to live in. I know that it is possible. I also know that that is not the world I live in now.

Currently, I can find exactly one printed book which tells me what I know to be true -- it is okay, even beautiful, to be autistic. The book is Through the Eyes of Aliens, by Jasmine Lee O'Neill. I carry a copy of this book everywhere, and even sleep with a copy of it. It is the only concrete and lasting object I own that tells me, directly, "It is okay to be you." Someday, I hope there will be more.

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 A Life Out Of Sync: Asperger Syndrome

 

       [By Seattle Times staff and news services.]

 http://seattletimes.nwsource.com/html/healthscience/2001209010_healthaspergers23.html

 

       Ashton Smith was a Mountlake Terrace teen who

       suffered from Asperger syndrome. The condition may

       have been a factor in his death earlier this month.

 

       High-functioning autism. People with this disorder don't get the joke, or most other interpersonal cues that society takes for granted. They have difficulty with communication and social skills, and can become preoccupied with one narrow subject. But they are typically bright and often excel in math, science and high-tech. Unrecognized and untreated until recently, the disorder is now the focus of research, classes and hope. 

       Ashton Smith knew he didn't fit in. The 16-year-old Mountlake Terrace boy couldn't make friends. The jokes, camaraderie and easy conversation typical of teenagers were beyond his grasp. The social cues that guide most people through the world were as impenetrable to him as a concrete wall.

       The problems are typical for people like Smith, who suffer from Asperger syndrome, a neurological malady that dooms many of its victims to a lonely life and dead-end jobs despite higher-than-average intelligence.

       In Smith's case, the condition, a form of autism, may have been a factor in his death earlier this month.

       More than five weeks after his mother reported him missing, the boy's body was discovered in the woods near their apartment. He was shot once in the head by a handgun that lay at his side. Though police haven't determined whether the death was suicide or homicide, Smith's parents said he had been depressed and had tried to kill himself once before.

       "I hope this will bring to light how isolated these kids are and how misunderstood," said Helen Powell, who runs the Asperger Support Network in Seattle. "Their world can look pretty bleak."

       Threats of suicide are very common, even among youngsters, said Powell, whose 17-year-old son has Asperger syndrome. "I've heard it from 4- and 5-year-olds."

       Until nine years ago, the disorder went unrecognized, and kids who had it were simply labeled "weird."

       "When the diagnosis became official in 1994, schools finally had a place to put that 'weird' kid they'd been diagnosing with ADD (attention-deficit disorder) or whatever," said Mary Meyer, whose daughter has Asperger and who heads the adult chapter of the Asperger Syndrome Education Network in Northern New Jersey, where she lives.

       An estimated one out of every 1,000 people suffers from the syndrome, named for the Austrian pediatrician who first described it in 1944. Much progress has been made in identifying children with the disorder, but there remain thousands of adults who were never correctly diagnosed.

       Meyer's 28-year-old daughter, Susan, saw psychiatrists from the age of 5 but was only given a name for her problem when she was in college. By that time, the young woman was seriously depressed.

       Every week now, Susan Meyer attends a social-skills group at West Bergen Mental Healthcare in Ridgewood, N.J.

       Karen Roe started the Seattle Asperger Syndrome Education and Support Group five years ago after struggling with the condition herself and watching her son, now 11, face the same social awkwardness that set her apart from others.

       "I always felt like I didn't belong on the same planet," she said.

       Roe, who became a counselor specializing in Asperger, offers an intensive training program called "The Gift of Gab" to help teens and adults learn how to converse more easily and read other people's body language and moods.

       People with Asperger are often particularly competent in high-tech fields. In 2001, Wired magazine ran an article suggesting that the couplings of technologically brilliant but socially inept people may be to blame for huge increases in the number of children with Asperger syndrome and autism  in areas such as California's Silicon Valley.

       Roe says her training program is particularly useful for people who hold jobs at Boeing, Microsoft and other Northwest technology companies.

       "They can often get the job," she said, "but it's hard for them to hold it because of their difficulty with communication and social skills."

       Movies with no sound Dr. Jeanne Marron, clinical director for Asperger services at West Bergen, said the above-average intelligence of most of her clients makes it possible to teach them how to read and react to social cues, an instinctive skill they lack.

       For example, she shows them movies with the sound turned down, guiding  them to examine the changes in people's expressions during emotional scenes.  "One study showed that people in the (Asperger) spectrum only focused on the  mouth, whereas most people scan the eyes and the entire face," Marron said.  "We get them to do this."

       Susan Meyer said this training has helped her "become better at dealing with people who are angry or have different opinions than I do."

       Researchers at the University of Washington's Autism Center are investigating whether it's possible to "switch on" brain regions involved in recognizing faces and reading expressions, which generally show very little activity in people with Asperger. In the project, which is just getting started, children are repeatedly shown photographs and coached on what to look for, said center director Geraldine Dawson, co-author of "A Parent's Guide to Asperger Syndrome and High-Functioning Autism." Later, their brains will be scanned again to see if activity levels have increased.

       Thus far, genetic research has revealed no medical answer to the disorder, although MRI scans show significant differences in nerve-cell connections in the brains of people with Asperger syndrome.

       In the meantime, "education and support are the interventions of choice," said Peter Gerhardt, executive director of Nassau/Suffolk Services for Autism in New Jersey. "With adults, it runs the gamut from how to get a job to how to avoid being a victim of sexual abuse."

       Without an ability to understand subtleties in conversation and body language, it's easy to get taken advantage of, emotionally and physically.

       Gerhardt was formerly at Rutgers' Douglass College, where he formed a social-skills group that Susan Meyer attended. He dubbed the group "Aspies With an Attitude."

       Bestowing this nickname, said Mary Meyer, "was an incredibly important way to help them form an identity, a sense of belonging and self-esteem - even though it's a strange kind of belonging."

       Gerhardt said his mission is to raise awareness about his patients. "I present their stories at autism conferences, to get the message out about who they are, and that they are interesting and should be valued," he said.

       Dawson, who directs the UW's center, said she also emphasizes the positive qualities of Asperger syndrome in her book. Many "Aspies" possess an amazing capacity for visualization that makes them well-suited to engineering, architecture and art. And their ability to memorize staggering amounts of information is a skill many envy.

       "Instead of just focusing on the challenges, we're just as interested in the unique traits and capabilities," Dawson said.

       A virtual birthday party An online program called KidTalk developed by the University of Washington and Microsoft aims to relieve the isolation of youngsters with Asperger by offering a nonthreatening environment where they can converse by computer. The program presents social situations, such as a  birthday party, then guides kids through the intricacies of the social interactions through a chat-room format. A trained therapist "listens in," offering private tips and comments to help children interact more smoothly.

       "It can be easier for kids with Asperger to have more intimate and deep relationships by computer, when they're not overwhelmed by face-to-face  interaction," Dawson said.

       Two other vast challenges remain for adult Aspies: employment and housing.

       "James," 46, lives with his widowed father and cannot hold a job despite his genius IQ. He spends his days in front of the TV and the computer, reading Old English literature and leaving the house only for martial-arts classes. His father, "Dave," worries that when he dies, James will have nowhere to go and no means of support.

       "He can take care of himself, and he can drive, but he doesn't have economic self-sufficiency and can't plan ahead," Dave said.

       With Marron's help, James has been learning how to prepare for job interviews. Some Aspies also need her help making sure they have a working  atmosphere free of loud noises or flashing lights. "I think for our higher-functioning people, there is hope of getting a meaningful job," Marron said.

       Susan Meyer longed to become a teacher, but she fears that's not possible. Instead, after several unfulfilling part-time jobs, this college graduate is looking into training as a locksmith.

       Marron said the health-care center is seeking funding for a

 residential program where staff members would check in regularly, monitoring  the budgeting and housekeeping tasks that often prove difficult for people with Asperger.

       "My long-range goal is to help every one of these Aspies have as productive a life as possible," said Mary Meyer. "So many of them could make  such a wonderful contribution to society."

 

       This story was written by Abigail Leichman of The Record (Bergen County, N.J.) with Washington state information contributed by Seattle Times  staff reporter Sandi Doughton.

 

 Characteristics of Asperger syndrome

       . Extreme inability to interpret social cues.

       . Difficulty understanding other people's feelings.

       . Difficulty judging personal space; motor clumsiness.

       . Marked impairment in the use of multiple nonverbal behaviors such as eye gaze, facial expression, body posture and gestures to regulate social interaction.

       . Difficulty in developing age-appropriate peer relationships.

       . Hypersensitivity to loud noises, clothing, food textures and odors.

       . Impaired speech and language skills in volume, intonation,

 inflection and rhythm; may exhibit "professorial" speaking style.

       . Inflexible or obsessive adherence to routines; repetitive behaviors.

       . Preoccupation with a particular subject to the exclusion of all others.

       . Socially and emotionally inappropriate responses.

       . Strong sense of honesty, justice and fairness.

       . A desire to be helpful, obedient and accommodating.

       . Strong ties to home and family.

       . Creativity in several areas of interest.

       . Uncompromising principles.

       . High personal standards.

       . Good organization skills.

 

 Asperger Resources   (Northwestern states and National.)

        The University of Washington Autism Center offers diagnosis and treatment: depts.washington.edu/uwautism/, or phone: 206-221-6806; e-mail: leenk@u.washington.edu

        Information on KidTalk, an online program developed by the

 University of Washington and Microsoft for youngsters with Asperger is available at the UW address above.

        The Web site Asperger Northwest lists support groups and programs: aspergersnw.tripod.com

        The Seattle Asperger Syndrome Education and Support Group meets monthly. For more information or details on "Gift of Gab" classes to help teens and adults learn to converse, read moods and body language, contact Karen Roe, 206-782-2232 or fishmama@qwest.net

       The Seattle Asperger Parent Support Group holds meetings and publishes a newsletter. Contact the group at: seattleaspergers@yahoo.com.

 

       Information about a national organization, the Asperger Syndrome Coalition of the United States, can be found at: www.asperger.org

 

 Reading Materials

       "A Parent's Guide to Asperger Syndrome and High-Functioning Autism" by Sally Ozonoff and Geraldine Dawson (Guilford Press).

       "Asperger Syndrome, the Universe and Everything" by Kenneth Hall (Jessica Kingsley Publishers).

       "Asperger Syndrome & Your Child: A Parent's Guide" by Dr. Michael D. Powers (HarperResource).

       "Eating an Artichoke: A Mother's Perspective on Asperger Syndrome" by Echo R. Fling and Tony Attwood (Jessica Kingsley).

       "Asperger Syndrome and Adolescence: Helping Preteens and Teens Get Ready for the Real World" by Dr. Teresa Bolick (Fair Winds).

       "Asperger Syndrome and Adolescence: Practical Solutions for School Success" by Brenda Smith Myles and Diane Adreon (Autism Asperger Publishing

 Co.).

       "Freaks, Geeks and Asperger Syndrome: A User Guide to Adolescence" by Luke Jackson and Tony Attwood (Jessica Kingsley).

       "Finding Ben: A Mother's Journey Through the Maze of Asperger" by Barbara LaSalle (McGraw-Hill)

 

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Residential Living for the Person with ASD 
 
How to find the best living situation for a young disabled adult 
 
Choosing the right residential situation for a young adult with autism can be one of the hardest decisions a family has to face. It is challenge to wade through the myriad of options available even the most experienced of parents and caregivers.
 
Karin Novak of Dungarvin, Inc., is on staff with a national organization that provides residential and employment services to persons with disabilities. Their organization states a family's first step when considering placing a relative in a residence should be to contact and work with their county representative, case manager or social worker. This person can advise them on the range of funding options available and other important considerations.
 
Another valuable resource is ArcLink, a nonprofit advocacy organization with a national database which lists providers of home and community services for the disabled. Their Web site provides guidance for families on understanding federal rules and regulations, help with identifying the right services, a way to search for providers, and an opportunity to exchange information and network with others.
Novak, who is senior director of Dungarvin, Inc. in Minnesota, suggests that when families have made the decision to begin looking for an appropriate residence, they should consider the following questions:
  • What is the company's mission or philosophy and does it fit with the needs of the prospective resident?
  • Is the location convenient to the potential resident's workplace and for visitors?
  • Is there a list of people who can provide references? Has a "satisfaction survey" been administered and are those results available? (Most organizations gather survey information from the people served, their families and county case managers, and in some cases, employees.)
  • Are staff members professional? How often does the staff turn over; what is the average length of stay for both staff and residents?
  • How complex are the needs of the individual? Are they medically fragile, and will the organization be able to meet their needs over time?
  • Is the organization stable: Are there sufficient financial resources?

"I asked to speak to the president of the company," says Fran Yoch, a parent who was searching for a place for her daughter. "We wanted to know that it was run in a way that would be the best for the residents." Yoch added that it was also helpful to look at annual reports, mission statements and even strategic plans. "You want to know that the structure is strong, that even though there may be staff turn-over, the organization will still run well."

"Our organization is guided by our mission statement, 'Respecting and responding to the choices of people with developmental disabilities,'" says Tim Madden, President and CEO of Dungarvin, Inc.
 
Once family members have narrowed their possibilities to a short list, Novak suggests some important additional considerations:
 
  • Chemistry among the individuals living in the house: "Age is not as important as whether personalities are going to mesh," explains Novak.
  • What sort of commitment will be expected from the family? "Families should decide how they want to be involved, and choose an organization that has the flexibility to meet that level of involvement," says Novak. A company should be able to honestly tell family members what will work with their philosophy, whether they want to be involved on a day to day basis, or just contacted for major decisions.

There should be a team approach by staff members. According to Novak, a good organization should have an adequate pool of resources. "There should be a team process, staff members should be thinking about other community resources they can bring in to serve an individual, whether it is family members, county staff or other professionals."

  • What is the living situation going to be?
  • How many people will be living in the house and will residents be expected to share rooms?
  • Is the organization planning for the future?
  • Are they committed to serving individuals as they age?
Typical residential services are not the only option. Also available are programs in which a staff person comes to the family home to assist with caring for an individual. Another option called Consumer Directed Community Support, which is administered by the local county, allows a family to hire their own staff.
 
The more research families do the greater chance they will have of finding a situation that will meet all of their needs now and in the future. Knowing what to look for, and what kinds of questions to ask, can help to make the process of selecting an organization and services more manageable, and ensure that the final decision will be the best one.
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Autism & Airport Travel Safety Tips

 

Port St. Lucie, Florida

By Dennis Debbaudt

 

Traveling through airport security will never be the same. Every traveler passing through a security checkpoint will now encounter waiting in long lines, having to produce two forms of picture identification at multiple locations, mandatory questioning and inspections of personal belongings by   strangers and the increasing likelihood of a light touch by stranger holding a geiger counter-like sound producing wand. When you add to the mix the possibility of a complete physical frisk or pat down and the presence and scrutiny of armed, uniformed paramilitary personnel the accompanying sensory-enhancing gauntlet of sounds lights and touch can tax the system of any traveler let alone one who has autism. This experience has quickly become standard operating procedure at U.S.airports.

 

People with autism, parents and caregivers may want to consider taking some extra measures to make passing through a security checkpoint easier.

 

As daunting as a security checkpoint is for some children and adults with autism, we must consider the point-of-view of the security professional. The behavior or characteristics of the child or adult with autism may make the security professional extremely anxious. Consider the reliance on visual cues and innocent echolalia a person with autism may display, such as repeating a phrase observed on a close-by poster. At a security checkpoint that phrase might include words that cite the laws or warn against the use of the words "bomb threat" or "hijacking." Someone who repeats this phrase would quickly come under suspicion at a security checkpoint. Those that repeat a question, run from or blanche at passing through a metal detector, or become over-anxious at attempts to touch them would also merit extra scrutiny. Left unexplained, the behaviors and characteristics of some person's with autism may delay their trip and cause unnecessary anxiety. These encounters are the types of situations that can easily escalate into misinterpretations, verbal and physical confrontations, physical containment and restraint.

 

As reported in my latest book, Autism, Advocates and Law Enforcement Professionals (http://www.jkp.com):

 

"Those with autism, parents and caregivers may want to consider carrying autism handout information which would at least include a basic autism brochure, and a person-specific handout that at least includes their picture, description, information about behaviors that security may find suspicious and the best way a security professional can communicate with or interact with that person. Many parents find business card handouts that might contain a message such as 'Perhaps my son/daughter's behavior is surprising to you. This is because he/she has autism', a brief definition of autism, and the phone number/website address of a local or national advocacy organization."

 

These are grass roots, one-on-one autism awareness campaigns. Make sure to carry enough generic information to leave behind with the security  professionals you may encounter. Anyone reading this message can download the  informational handout "Educating theCommunity...and Law Enforcement" at   www.policeandautism.cjb.net make copies and hand them out. An expanded version of this handout and other awareness and educational materials are available in my new book.

 

If possible, make travel plans well in advance. Call the airlines and   security companies (soon to be mainly federalized) and ask what you can do to help the security experience go more smoothly for the person with autism and the security professionals they will interact with. If the trip has to be made suddenly, arrive extra early, bring plenty of handouts and explain to the gate agent what your needs are.

 

Those that have the time may want to inquire with their air carrier about assistance plans they may offer inexperienced travelers. Northwest   Airlines, for example, offers the Adult Assistance Program for a fee   ranging from $40.00 to $75.00. This may prove to be money well spent. The program offers personal assistance from check-in, through security and boarding and through the destination airport. While the program does not assist with eating, personal hygiene or medication issues, it does provide assistance through the crucial security checkpoints. Parents and caregivers of a passenger using travel assist can also pass through security with their loved even if they are not traveling with them. Special security passes would be issued in lieu of tickets. A program like Northwest Airlines' Adult Assistance could be utilized by caregivers even if they are traveling with a loved one.

 

Anticipating the worst is never a pleasant proposition. But it's something we do all the time in our everyday lives when we put on seat belts, lock our back doors, pay the life insurance. The downside for not doing these things is extremely negative in each example. But do we shudder in fear every time we do these things? Of course not. They are common sense options associated with everyday life.

 

Taking extra precautions is also an everyday consideration that those with

autism that can, parents and caregivers also become accustomed to taking. When traveling through our communities, and airports, taking the precautions--alerting security, carrying ID and informational handouts, considering the needs of others, anticipating the possibilities--can help make our trips and travel a lot safer and a lot more relaxing. Give yourself at least two weeks to seek the best that our airlines and airport security can offer. But it's never too late to alert the airlines and security professionals to a special request for assistance.

 

© 2001 by Dennis Debbaudt

 

Special thanks to Mike Flotteron of Northwest Airlines for his assistance in preparing this report. Most major airlines offer programs similar to the Adult Assistance Program. Check with your air carrier about special travelers services they offer.

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Asperger's Syndrome: A Developmental Puzzle

by Michael McCroskery

Cognitive and social skills, which shape personality and character, develop throughout life. However, genetic or environmental obstacles can obstruct development, especially early in life. One such obstacle is Asperger's Syndrome.

Asperger's Syndrome (or AS) is a congenital neurobiological condition that affects 0.25% of the population. AS is linked to autism spectrum disorder, and includes autistic-like behavior and marked deficiencies in social and communication skills. AS individuals are of average to
above average intelligence, some with unusual gifts and creativity. As a diagnosis, it has been known in Europe since the 1940's, but has only been included in our medical diagnostic manuals since 1994. Thus many adults and children remain undiagnosed. Consequently AS is
relatively unknown and not clearly understood, even among professionals.

AS is indeed a puzzle, and researchers are working to identify the pieces and form them into a meaningful picture. My experiences as an adult recently diagnosed with Asperger's, together with my studies in child development, suggest that individuals with AS are like young childrenstuck in time, so to speak, never able to advance beyond early stages in social, cognitive and language development.

For example, most AS difficulties center around social competencies. A salient characteristic of young children is egocentrismthe inability to recognize that other people think and feel differently than oneself. Persons with Asperger's Syndrome remain in this egocentric state, unable to interpret the thoughts and emotions of others, or to experience empathy. Another name given to this condition is "mind blindness"the incapacity to visualize the mind states of others. Thus it is hard for AS individuals to develop normal friendships, as either children or adults. Without empathy, they become emotionally stunted.

A related problem is the inability to carry out social referencing through understanding nonverbal cues, such as facial expressions or body language. Such cues are "invisible" to those with AS. A piece of the AS puzzle related to cognitive skills is attentiveness. "Attention span" is the number of mental elements that one can remember at any given time. During preschool years children exhibit "centration," focusing on one piece of information at a time, and briefly at that. The ability to process several elements simultaneously, or to remain focused on a task, comes with greater cognitive sophistication. Unfortunately, the tendency towards centration seems to remain with the AS individual into adulthood. One diagnosis commonly given prior to accurate diagnosis with Asperger's Syndrome is "attention deficit disorder."

A third part of the Asperger's puzzle relates to language. An early stage of language development includes "telegraphic speech" abbreviated speech in which words not essential to the meaning of a sentence are omitted. People with AS seem not to develop beyond this stage, further stunting their communication skills. The easy flow of spontaneous social conversation is usually beyond their capacities. They must learn social "scripts" through special training and repetition. Even then, AS speech tends to be stilted and formal.

Also, children in early stages of language development are quite literal. Figurative use of language, symbolic representation, nuances and double meanings are a later development. Once again, the individual with Asperger's remains in a childhood realmthat of literalism. Linguistic sophistications such as jokes, puns and idioms are hard for AS individuals to grasp. Even the most basic of social interactions become a confusing and humiliating experience.

Understandably, AS individuals encounter enormous difficulties during the transition into adolescence, and later into adult life, since they have not completed the requisite developmental tasks or moved beyond early stages in language, cognitive and social skills. They frequently remain emotionally dependent upon parents or family members, and suffer from separation anxiety and insecurity when trying to live on their own. Friendships with peers, romantic relationships, marriage and parenting, and entry into the work world are usually beyond their capacity. They remain, in many debilitating ways, stuck in time, trapped in the AS puzzle. They are, in essence, childlike beings attempting to live in an adult world, but without the support and understanding that children are afforded.

Pervasive Developmental Disorder

An overview for teachers and parents

1. Impaired Social Interaction

2. Impairment in verbal & nonverbal communication

3. Restricted range of interest

1. Impaired Reciprocal Social Interaction:

- lack of awareness of other's feelings

- does not seek comfort when distressed

- trouble separating from parent - uses adult to organize & control environment; can't read parent emotions to know it will be safe

- abnormal/absence of social play

- can't figure out how to get along with peers

2. Impaired Verbal, Nonverbal Communication & Imaginative Activity:

- Absence or Impaired mode of communication

- Does not understand gestures, body language, tone of voice

- Abnormal nonverbal communication (no eye contact)

- Absence of imaginative activity - symbolic play and communication symbolic

- Abnormality in production or rate of speech, no intonation - flat

- "Strange speech" repetitive, irrelevant, parroting

- Stereotypic body movements (handflapping)

- Concentrates on one sensory aspect of an object (eg sound or smell or feeling of something)

- attracted to spinning or shiny objects

- Does not like changes, needs sameness in rountine

3. Restricted Range of Interests:

- Knows everything about that one thing (ie, cars, machines)

- Gets "stuck on" one topic

Common Features not Described in the Journals:

(not present in all cases)

1. Vulnerabe/prone to being disorganized

2. Falls apart when something changes

3. Sensory Processing: integration or regulatory defects: proneness to sensory over arousal; hyper & hypoactivities

4. auditory sensitivity

5. trouble with background noise (can't tune it out)

6. hand flapping- control for visual overload

7. tactile hypersensitivity- deon't like to be touched unless asked may have trouble with clothing, might not like wetness


4. Emotional Regulatory Defect:

- Lack of smooth emotional modulation

- extremely distressed quickly

- positive emotions can also get out of control and negative as child becomes overwhelmed

5. Marked daily Variability in Fucntioning in Attention, Organization, Language, Sociability, tension and Behavioral Control:

- Bad days where can't do anything previously done

- Can't Understand symbolic language - child is concrete; may not undersatnd a joke, figurative language; tied to literal

6. Problems Processing Nonverbal, Verbal Information esp. sequencing

- Can't understand complex information

- Can't decode what is important, what isn't, why things are put together

- Can't understand what is going on in someone elses mind (intentions etc)

7. Uneven Cognitive Development:

- Strong Verbal memory

- Weak in Verbal Areas

- Can make you think they have skills and concepts not mastered based on memory learning

- Strength also in visual/ perceptual skills (ie. puzzles)

8. Chronic Underlying Tension & Anxiety:

- Always fell vulnerable because can't sequence & develop an expectation

- Unable to predict what will happen

- Constantly feel in danger of or on the verge of disorganization - somewhat like knowing a little of a foriegn language and then trying to fucntion in that country... missing info, don't know idioms, don't understand culture

3 Kinds of Pain these Children are Trying to Cope With:

1. Confusion - feeling lost

2. Overly Stimulated

3. Emotionally out of control Adults usually try to help children by giving them verbal information and sensory stimulation ----> PDD children withdraw

Child's Behavior is to deal with these 3 types of Pain:

- Repetitiveness/Sameness - trying to reduce confusion

- Compulsion Behavior - an exaggerated attempt to insist on order; gain control

- Hand Flapping or Tapping: provides a sensory stimulation that child has control over

- Tantrums - sensory information the child is in control of; obliterates the rest of the world

- Withdrawal/Impaired Social Interaction: withdraws from social interaction or stimulation that can't be understood; child controls situation by withdrawing

Combination of Sensory Processing Problem & Social Defect:

- Every symptom or behavior exhibited is an expression of trying to cope with an overwhelming world

- There is great variation in cognitive functioning of these children

- They need to learn that if they don't understand something they need to ask

- Need to keep environment manageable and sensory input so child can function

- Have to modulate kind and quantity of of stimulation according to child's response

PDD is a Spectrum Disorder from severe to which a child can barely be diagnosed to very mild

Principles in Treating the Child:

1. Make environment intelligent to child

2. Provide a lot of organizational structure/environment predictable(routines, picture schedules, sounds mark transition, prepare for change with a calender,picture card, small activities to make time seem shorter)

3. Do not Rush the child

4. Monitor level of stimulation in environment and regulate according to child's needs and
capacity for regulating her/his arousal. Pay attention to regulatory deficits

5. Set up ways to monitor own self stimulation- quiet place to retreat to; special object from home which helps calm the child, headphones & music,hands over ears and close eyes, other calming activity

6. Teach child self-monitoring- How are you feeling? What are your hands doing? How is your stomach feeling?

7. Teach child how to put a strategy into place independently once he/she can monitor self. Before this teacher may need to cue child. (Teacher pulls on ear as signal)

8. Plan for highly stimulatiing activity such as lunch room, playground, fire drill etc.. Do
not send child until he can do it- this is when he wants to do it - Starts slo and move to next step as child exhibits comfort:

a. Activity that is isolated

b. Adult joins

c. One peer joins... etc..

* capacity for managing sensory information changes daily

9. Facilitate communicative growth by simplifying language and eliciting then expanding the child's communicative efforts in the context naturally occurring in the interaction:

- Treat acquisition of cognitive skills as secondary to social only

- Goal to be relaxed & happy at school

- Don't be fooled by splinter skills - don't focus only on strengths because it will encourage rote learning/memorization

- Monitor child's understanding and teach the child to monitor own understanding by learning to ask for clarification

10. Indentify any existing areas of relatedness and work to expand them with the child. Give the highest priority to pleasurable interactions with the child and to relating in the
presence of strong feelings. The goal is to help the child develop a strong sense of self.

11. Provide opportunties for the child to regulate his/her level of arousal and engagement

in socially facilitative manner (ie, quiet place to retreat instead of tantrum. Allow the child to self regualte as much as possible, without withdrawal and without allowing him to control environment.

12. Facilitate familial understanding of the child as having unique strengths and weaknesses and provide support to parents in coping.

Additional Notes:

1. Perserveration- sign something is not right with child

2. Inclsuion may be more than some of these children can handle

3. Large group activity may be too much

4. For unpredictable situations ie substitute- may need to prepare child for these things with a visual "wild card"

5. Daily notebook fro parents is helpful, monthly/bimonthly team meeting, ask parents what helps child feel comfortable

6. Attachment to Teacher- can't go to the bathroom without child becoming distressed;leave a scarf or necklace of clothing with child

7. Separation - Mom puts on smock when going to work; child learns this signal and learns she will come back, adjusts to signal

8. Child may need to leave classroom to calm himself (e.g., walk to drinking fountain or other side of school.

________________________
Michael McCroskery is an adult with AS. He graduated with a BA in Communications from the University of Tampa in 1992.  Michael decided to become an advocate in order to help parents of children who have the same disability as he. This article is based on a Child Development course Michael took which has provided much fuel to the AS awareness project he is currently working on. He is also currently working on getting his CDA.
 
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Brick Township New Jersey and Increased Autism Rates

Adelle Tilton

 

Increasing without explanation

April, 2001

 

April is Autism Awareness Month and as a part of that event in 2001, The Montel Williams Show presented a program on April 12 about autism. This is another example of a major television program making autism a priority issue in their coverage. This show, featured people from around the country and especially people from Brick Township, New Jersey, is considered to be one of the best coverages provided by television yet.

 

The show, covered such topics as clusters of autism, genetic research, ABA, vaccines, diet, the increase throughout the country, the Congressional Autism Caucus, and the Open Your Eyes project. Additionally congressional hearings on the cost of raising individuals with autism were discussed and how that figure impacts the general public is very comprehensive.

 

Brick Township was investigated by the CDC because of its high incidence of autism in its children. The report to the parents of the Brick Township children stated that:

 

  • At the request of the New Jersey Department of Health and Senior Services and congressional district representatives, the Centers for Disease Control and Prevention (CDC) and the Agency for Toxic Substance and Disease Registry (ATSDR) investigated if the rates of autism among children in Brick Township, New Jersey were higher than expected. Published prevalence rates were examined and researchers looked into whether there were possible links to environmental exposures.
  • Autism is a spectrum of disorders that are complex and lifelong. Individuals with autism have problems with social interactions and communication skills as well as a tendency towards restrictive or repetitive interests and behaviors. Autism spectrum disorders (ASD) is a term used to describe the continuum of functioning among persons with autism. ASD includes autistic disorder, pervasive developmental disorder - not otherwise specified, Childhood Disintegrative Disorder, and Asperger’s disorder as defined by the "American Psychiatric Association’s Diagnostic and Statistical Manual - Fourth Edition (DSM-IV)."
  • CDC’s expertise was called upon because of the complexity of investigating a behavioral disorder such as autism and the fact that CDC was developing epidemiologic methods that address the unique challenges of autism.
  • The prevalence investigation identified children with possible autism whose parents were residents of Brick Township during 1998. The autism diagnosis was verified through a clinical assessment.
  • The rate of autism among children in Brick Township was 4.0 per 1,000 children aged 3 through 10 years. The prevalence of the more broadly defined autism spectrum disorder was 6.7 per 1,000 children. These prevalence rates are higher than rates reported in other currently published studies from other countries.
  • Whether the Brick Township rate is unusual relative to other U.S. communities is uncertain. No current data on the prevalence of autism in the U.S. is available.
  • A few very recent studies in other countries have found high rates. Service provider data in the U.S., e.g., special education data, show increasing numbers of children with autism receiving specialized services.
  • There is ongoing scientific discussion about whether higher rates of autism worldwide reflect a true increase over time, a greater awareness of these disorders, improved case finding techniques, broader diagnostic criteria, or a combination of all these factors.

 

Other results from the Brick Township investigation:

 

* Sixty of the 75 potential case children met the criteria (DSM-IV) for an ASD.

* Thirty-six of the children met the criteria for autistic disorder.

* There were twice as many boys than girls with autistic disorder.

* Sixty-three percent of the children had mental retardation.

* Seven children had a brother or sister who also had an ASD.

 

Because of the lack of data on autism in the U.S., monitoring the prevalence of these disorders in several communities across the country would be helpful to identify the magnitude of this health problem and how it varies in different population subgroups. In addition, we need to do large-scale epidemiologic studies to begin to understand the cause of this important health problem.

 

Source:  http://autism.about.com/cs/autismexplosion/a/bricktown.htm

 

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MY LIFE WITH AUTISM: IMPLICATIONS FOR EDUCATORS

By Stephen Shore

The Autism Bomb and Preschool

After 18 months of normal development, I was hit with the "autism bomb," became nonverbal, and was diagnosed with "Atypical Development with strong autistic tendencies and psychotic." The diagnosing professionals considered me "too sick" to be treated on an outpatient basis and recommended that I be institutionalized. However, my parents, refuting their suggestions, supplied a crucial, home-based early intervention program emphasizing sensory integration, music, movement, imitation and narration -- all long before such service was formally conceived.

My mother would try to get me to imitate her, but to no avail. Finally, she imitated me; and in doing so, I became aware of all within my environment. The educational implication of this strategy is the importance of meeting the student (whether on the autism spectrum or not) where they are cognitively and developmentally before new material can be learned. If that means flapping and rocking with the child until they are aware of your presence, then that is what should be done before moving on to other material. My parents had no psychological or educational experience, but just did what good parents needed to do for their child. Although I didn't start to regain verbal skills until age four, with the help from my parents and later from teachers and professionals, I am now completing my doctoral degree in special education at Boston University, with a focus on helping autistic people develop their capacities to the fullest extent possible.

At age four, after my parents finally convinced the school that originally recommended I should be institutionalized to accept me, I spent a year there before transitioning to a nursery school program. Unfortunately, entering public school kindergarten at age six was an academic and social disaster. Although I was in regular education, I probably needed a program splitting my time between a special education resource room and regular classroom with assistance from an aide.

Elementary School

During elementary school I was usually almost a grade behind in math and reading. My first grade teacher told me that I would never be able to learn mathematics -- but somehow, I managed to master the subject well enough to teach statistics at the college level. Another teacher informed my astonished parents that I had trouble reading, despite the fact that I was reading the newspaper at home. Unlike educators of today who focus on autistic students' strengths, my teachers never developed math and reading lessons based on the foot-high stack of astronomy books on my desk that I read and copied diagrams out of aat a furious pace.

Socialization was also very difficult due to the teasing and bullying of children that are different that occurs in the public schools. Fortunately, educational professionals now realize that bullying is a behavior not to be tolerated, as opposed to a developmental phase that children need to go through or experience.

Improperly understood, sensory integration dysfunction can severely impede functioning in a classroom. For example, visual sensitivity to fluorescent lights can make them appear like strobe lights to a person with autism, creating an unsuitable environment for learning. An elementary-school child in this situation may very well get out their seat to shut off this source of sensory overload that, in addition to being a distraction, may cause physical pain. I have seen the eyes of people of those with sensory sensitivities vibrate in synchrony with the 60 Hz. cycling of fluorescent lighting. The teacher, unaware of the student's condition may interpret this "out of seat" activity as an avoidance behavior. However, in reality, this behavior is an attempt to eliminate a sensory assault that interferes with functioning in class. Alternatively, a child, more severely affected by autism, who is nonverbal and less aware of the source of her sensory overload, may simply have a tantrum.

Another challenge for many students with high-functioning autism and Asperger Syndrome is literal interpretation of language. For example, in the fourth grade I had a friend who told me that he "felt like a pizza." Unable to understand the idiom, I thought that he meant that he looked like a pizza and I tried to assure him that he didn't smell nor look like this popular American food. Many years later in college, while ruminating about this event, I finally understood that he felt like eating a pizza.

Middle And High School

Middle and high school often overwhelm children on the autism spectrum due to the increasing complexity of interpersonal relationships, homework, and the act of transitioning between classrooms for different courses. Students begin dating and there is increased emphasis on conformity. Homework requirements from multiple courses demand proper allocation of time. For those with visual-perceptual challenges, getting from one classroom to another can be like walking through a maze. Some accommodations for these children include working with an aide for social interaction skills. Keeping a schedule detailing times and location of classes, as well as due dates, for assignments can help with getting students to classes and completing homework on time. The act of writing as well as converting verbal information into words on paper during a lecture is also a significant challenge. Providing outlines and class notes are especially helpful, as they allow the student to focus on processing the subject matter rather than frantically writing down what is said in the lecture or copying overheads. In fact, to me, accommodations are just extensions of good teaching practice. All students can benefit from having a topical outline and class notes.

Fortunately, for me, middle and high school was actually better than elementary because I was allowed to specialize in my favorite interests of music and bicycles. Middle and high school student organizations can provide a place where a child on the autism spectrum can use their special interests to base their interactions with their classmates. For example, I spent much time in the band room and started a bicycle club with much success. My grades improved dramatically because I finally figured out what teachers wanted from me in terms of schoolwork. In addition, getting along with other students became easier because I realized that socialization using words, rather than sound effects from the environment was more efficient in communicating with other students. However there was still a degree of bullying. For me, a social aide during elementary school would have helped greatly in understanding my teachers' expectations for quality schoolwork and meaningful interactions with my classmates.

College

College, like for many people with high functioning autism and Asperger Syndrome, was a sort of utopia. Gone was the ostracizing from the public school cliches for failing to fit into what they determined as popular. Instead I found people with similar interests. For example, if I wanted to ride my bicycle at midnight, I could usually find another person in this 25,000-student university to ride with me. Students interacted for the pleasure of exchanging ideas and enjoying each other's company rather than how "well" someone fit in.

Life Beyond School

At this time, I teach college-level special education courses where I incorporate my personal experiences to help future teachers of people with autism and other special needs. Finally, I serve on the board of directors for several national organizations pertaining to autism such as the Autism Society of America, Unlocking Autism, Asperger Syndrome Coalition of the United States, and as Board President of the Asperger's Association of New England.

In addition, I work with people on the autism spectrum using music and computers. Depending on the severity of the autism, music may be used to develop skills in socialization and communication, as well as gross and fine motor control. Or, as outlined in detail in my book, Beyond The Wall, I may actually teach them how to play an instrument. In addition to working on motor and breath control, the child benefits greatly from having a skill that can serve as an avenue for socialization.

Ongoing Educational Challenges

Some challenges that remain from my childhood diagnosis of autism include accurate reading of nonverbal communication, subtle social situations such as office politics, and facial recognition. It is difficult for me to remember the faces of my students in class so I take attendance at the beginning of every session in order to match the name to the face of the person who answers. Additionally, taking notes in fast-paced lectures remains a significant challenge. Instead of spending a lot of time and energy improving my note-taking with only marginal results, I devise my own accommodations, such as recording the lecture, typing the lecture notes into a laptop, asking to see another student's notes, or even asking the teacher for his or her lecture notes.

In summary, it is important for educators to realize that due to sensory issues, people who are on the autism spectrum often perceive the environment differently than most others. In addition, long-term prognosis of people diagnosed with autism spectrum disorders is difficult at best. While the effects of autism do not disappear, it is possible through proper early intervention, support and education, leading to self-awareness and accommodation to live successful lives. The nonverbal, self-abusive, tantrumming toddler may become the child that makes it through public school and high education to become an independent, productive citizen leading a fulfilling life with merely residual outwardly visible effects of the autism spectrum. Finally, as with all humans, the possible achievement of those on the autism spectrum is unlimited. The challenge is finding the key to unlock that potential.
 

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AWARENESS

Autism Explained in Plain Language ~ By Lenny Schafer

[Keep this on file for when needing a one-page, less than 500 word plain English explaination of autism.]

Mostly we don't know what causes autism, so it's best described by behavior. A collection of extreme behaviors are measured to see if the person, usually a very young child, falls within the label of Autism Spectrum Disorder. It's called a spectrum because it can be a wide range and differing collection of behaviors that fit the label. These behaviors include repetitive motions, self-isolation, loss of eye contact, restricted use of language, difficulties understanding the emotional feelings of others, strange taste for foods, mental retardation, sensitivity to sounds or light or touch and many more, in varying degrees. Every person with autism seems to have their own unique snowflake of symptoms. Something about the behaviors have to be so extreme as to be disabling. Just being a little weird or awkward alone isn't enough to be considered on the autism spectrum.

There are theories that the disabling behaviors are the result of early physical brain damage caused by a harmful thing or combination of things in the environment, along with having a genetic weakness for the disorder. But we don't know what genes are responsible. Some believe that the harmful things in the environment are vaccines which contains poisonous materials like mercury or viruses.

The most popular treatments today are behavior training done at an early age and eliminating things like dairy and wheat products from the diet; they seem to make things worse for some kids. Many parents find supplements help. Others try to get any lingering mercury out of their children's body with a medical treatment called chelation.

We don't really know what causes it, exactly what harm it is doing to the brain or to the rest of the body or how to cure it. More doctors are say ing that autism is more than just having a broken brain, but that many of the people are sick as well from the toxic assaults.

The government doesn't put much effort into finding out what causes it, because if it turns out to be vaccines, and there's a growing body of science that supports this theory, it means the government itself is the source since they make the vaccines mandatory and are supposed to be the ones who make sure they are safe. It's human nature to try to find elsewhere to blame for one's serious mistakes, even more so for government agencies. But if it turns out to be vaccines, it would be the single greatest medically created public health disaster in modern history.

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Bright beginnings can mask a learning disability

By Laura Pappano, 3/17/2002
http://www.boston.com/dailyglobe2/076/learning/Bright_beginnings_can_mask_a_learning_disability+.shtml

Newton parent Jessie Solodar marveled when, at 21/2, son Dan learned the names of all the instruments in an orchestra and often pretended to be a conductor. ''We thought we had a maestro on our hands,'' she said. Even today, when you meet Dan Rozenson, a 12-year-old Harry Potter look-alike, you think ''smart kid.''

And he is. But that's only half the picture.

Dan has a verbal IQ of 130 - and Nonverbal Learning Disorder, a diagnosis education specialists say is becoming increasingly common. Specialists disagree about whether it is related to autism or is a distinct disorder, but the diagnosis is growing to the point where one special education director described it as ''the flavor of the month.''

Parents, however, describe wrenching experiences with schools and teachers who doubt something is wrong because children appear intelligent.

''It's a relatively new category,'' said Boston lawyer Robert Crabtree, who helped write the state's special education law. ''Whenever school systems run into a category that mostly affects behaviors, social skills, and organizational skills, they tend to react by saying, `That's not our problem.'''

Although schools have become practiced in serving children with learning disorders, including dyslexia and Attention Deficit Disorder, NLD presents a tougher problem. Children with NLD are far from being ''nonverbal'' and are, in fact, extraordinarily verbal, memorizing facts and speaking with an impressive vocabulary. Their troubles come with visual and spatial abilities, gross motor skills, balance, organization, interpreting social interactions, and anything that requires making sense, whether of writing or someone's tone of voice.

So although students with NLD are often viewed as gifted early on, by late elementary and middle school they're confounded by problems, said Ann Helmus, neuropsychologist and codirector of the Children's Evaluation Center in Watertown.

''For these guys, everything is a struggle,'' she said. ''Recess is a struggle. They can read but they can't comprehend. They can do math computations, but they can't solve problems. They can spell, but they can't produce written compositions.''

One mother described taking her 11-year-old son with NLD to see ''Harry Potter.'' He loved the movie's costumes and scenery, but couldn't follow the story. Instead, he focused on the fact that in one scene, the camera is reflected in Harry's glasses.

Dan, and students like him, may appear to teachers like intelligent students who are lazy or acting out. ''Dan is a very bright boy who has a lot of potential,'' his teacher wrote in his third-grade report card. ''He is very capable of doing the assignments, but lacks the initiative or desire to complete the work.''

In reality, though, students like Dan are working hard but not making progress, which can sink their self-esteem and trigger depression, said Sue Thompson, an educational therapist in Vallejo, Calif., and an authority on NLD. ''I call it, `The illusion of competence,''' said Thompson. ''These individuals look very competent, so when they mess up it looks like purposeful behavior - and people don't suspect neurological incompetencies.''

That's the greatest frustration, say parents and children with NLD. Dan said he has been made fun of for not completing homework - even as he has pointed out to a teacher that Moses Fleetwood Walker, not Jackie Robinson, was the first black to play baseball in the major leagues.

''Having the diagnosis, I can have a partial explanation for why my homework sometimes doesn't get done,'' said Dan. ''It sort of states that I'm not lazy.''

It's comforting to have a diagnosis, but parents say it's still challenging to get proper help. Natick parent Barb Wilder-Smith, who has a 12-year-old son with NLD, started an NLD support group two years ago. Since then, she said, the electronic mailing list has grown to 172, and 50 people attended the last group meeting.

''When I started this two years ago, I longed to talk with other families of children with this diagnosis,'' she said. ''I had not envisioned the interest and need.''

Although there always have been people with NLD - many cite the stereotypical class ''geeks'' who never fit in socially as possibly having the disorder - the very educational reforms heralded as improvements for most children such as cooperative learning, critical thinking, and problem-solving instead of rote memorization and computation are highlighting the weaknesses of students with NLD.

''Education is a preparation for the future and if we are failing groups of students by not preparing them to be independent individuals contributing to society, then we are not doing our jobs as educators,'' Thompson said.

It means schools have to go beyond looking at the student's normal or even high IQ, said Janice Ware, psychologist and associate director of the Developmental Medicine Center at Children's Hospital in Boston. ''The real issue is recognizing that this is an impediment that does require special education intervention,'' she said.

Judith Hoyer, director of student services for the Medway Public Schools, said schools have to figure out which specialist can help a child most. ''We are asked to prioritize and not to work with an array, but focus on the most important things we can do in school to help that child access the curriculum,'' she said.

But Helmus said children with NLD often need a range of help. Plus, she said, unlike other learning disabilities in which children get classroom support to do the work on the one hand and help to correct the problem on the other, there is no fixing NLD - only teaching students ways to cope.

At the private Corwin-Russell School in Subdury, which works with learning disabled children of above-average intelligence, teacher Judy Seligman said the school makes instruction in reading and responding to social cues part of the curriculum.

Solodar said it has taken time - and some painful experiences such as the D-minus that Dan earned in a sixth-grade project because he couldn't interpret the teacher's instructions - but Dan is getting help and his grades and self-confidence are rebounding.

But finding the right help is not easy. Mairead Reddin of Medway feels years of her 17-year-old daughter Fiona's life were wasted for lack of the proper diagnosis and help. ''The single most important thing that would have helped Fiona would have been first of all for the school system to be accepting and willing to work with her,'' she said.

And although Fiona, who comes across as intelligent and articulate over the phone, may graduate from high school this spring, Reddin feels uncertain about the future. ''I have well-meaning friends and relatives who say, `Fiona will do fine, she's a great kid,''' said Reddin. ''Well, I hope they're right because I have severe doubts.''

Send feedback to Laura Pappano at
chalkboard@globe.com.

This story ran on page C15 of the Boston Globe on 3/17/2002.
©
Copyright 2002 Globe Newspaper Company.
 

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Children with sensory integration dysfunction need help making sense of the world

Sunday, March 3, 2002


By Kathleen Longcore ~ Booth News Service
http://www.mlive.com/news/statewide/index.ssf?/xml/story.ssf/html_standard.xsl?/base/news/101499900132570.xml 


SPRING LAKE -- Cherry Orent knew something was wrong. 

After the horrible daily battle with her 4-year-old daughter to get her dressed and into her car seat, the Spring Lake woman would look at Tori in the rear-view mirror and see a little girl with sad eyes and slumped shoulders.

She knew combing Tori's lush brown hair shouldn't be a war of wills. And it wasn't normal for Tori to shriek in pain when her mother trimmed her fingernails. She felt like a bad mother with a bad child.

"Every day was such a struggle for her," said Orent, 35. "Getting out the door was a major ordeal, getting shots (at the doctor's office) was a nightmare. Every day I knew it was going to be bad."

Frustrated and desperate, Orent turned to the Internet. She typed her daughter's symptoms into the computer, and was hugely relieved to find she wasn't alone.

Tori's characteristics fit a neurological disorder called dysfunction in sensory integration (DSI), in which sensory information -- sound, color, smell, taste and touch -- overwhelms the body's neurological circuits.

"Finally somebody knew what I was talking about," Orent said. "It was nice to know that I'm not crazy and I'm not a bad parent."

The disorder, which is not well-known, is found in some but not all children who were born prematurely, who have attention deficit hyperactivity disorder (ADHD), cerebral palsy and autism, said Marlise DeShane, an occupational therapist with Spectrum Health's Rehabilitation Services. But it also occurs in children who fit none of those categories.

"This wasn't something I could help and it wasn't something Tori could help," Orent said.

No one knows how common DSI is; no national statistics are available. In the Grand Rapids area, Mary Free Bed Rehabilitation Center has offered diagnosis and treatment for about 15 years and sees about 75 children and teen-agers a year. Spectrum Health Rehabilitation Center started its program last summer and has seen about 35 children.
The Orents and other families who have struggled with DSI hope that a wider understanding can get help for these children more quickly.

Some, like 14-year-old Dustin Shane of West Olive, bear lasting emotional scars from a lack of proper treatment.

"Dustin wasn't diagnosed (with DSI) until he was 11," said the boy's stepmother, Deb McClellan, 42. Unfortunately, by that time his self-esteem had been "destroyed," she said, because he had such a hard time in school.

Difficult infancy

Tori, born six weeks prematurely, was difficult from the get-go, her parents say. She didn't like getting dressed, didn't like diaper changes, was a fussy eater, and didn't enjoy the cuddling that babies usually love.

Orent and her husband, Doug, thought Tori was "just a cranky baby," she said.

But by the time Tori was 4, things were worse. She awoke eight or nine times a night, was still a fussy eater, and would only wear clothes that were too big and washed a hundred times. She didn't want to play with other children and had tantrums her mom calls "meltdowns" over simple daily routines.

The only time she seemed happy was when she was playing alone or spinning herself in her backyard swing. "She could spin and spin and not get dizzy," said her mother.

Tori's pediatrician could offer no help. He thought it was a parenting problem and kept telling Orent to pick her battles and hang tough.

"But 'timeouts' didn't work; nothing worked," Orent said.

The disorder can be confusing for those who aren't specialists because it often appears in combination with other diagnoses, such as autism and ADHD, DeShane said.

In fact, it is common for children who seek therapy for DSI to have multiple diagnoses, said Shannon Mechan, an occupational therapist who provides DSI assessment and therapy at Mary Free Bed.

The disorder often is perceived as a parenting problem or a psychological problem, said pediatric psychologist Steve Pastyrnak.

"We're really looking at a physiological problem. But it's not well-recognized. (Referrals) are very rarely coming out of a pediatrician's office," said Pastyrnak, who works at Pine Rest Christian Mental Health Services and Spectrum.

Therapists think many children with this sensory dysfunction are not diagnosed until they are school age. Others are misdiagnosed as having behavior problems, learning disabilities or hyperactivity. Some, like 14-year-old Dustin, have been put on ADHD medications that mask the sensory problems.

"When the terrible twos started, Dustin never outgrew them. He would have screaming fits," says McClellan, his stepmother.

His kindergarten teacher wanted him tested for ADHD, but the doctor said he was too young.

First grade was "a nightmare," McClellan remembers, because when Dustin misbehaved, the teacher scolded him and he would start screaming.

Pediatricians said he was just being willful. Meanwhile, he was barely passing in early elementary and hated school. In third grade, he was diagnosed with ADHD and put on Ritalin, which helped him concentrate but didn't solve the sensory problems.

It took a head injury to get Dustin a proper diagnosis. When he went to Mary Free Bed for rehabilitation after a bike accident, therapists there immediately recognized the sensory problem.

"They said, 'This child has DSI; we need to treat that first,"' McClellan said.

How therapy works

Tori has undergone four months of therapy with DeShane at Spectrum Health, and today she is a happy 4-year-old who hugs people, wears shoes and clothes that fit, and interacts with other children -- including her 2-year-old sister, Hope. She is sleeping well, gets into her car seat without a fuss, and recently even used glue -- something she wouldn't touch before -- to make her dad a Valentine.

"I get big hugs now and lots of smiles," DeShane said. "And Tori has improved attention. When I first saw her she couldn't sit for 20 minutes to do a (Valentine) project."

It's important for children with DSI to have the adults in their lives understand they aren't being naughty; they have a physical problem, DeShane said.

The brain is supposed to label and organize all sensations. When you take a sip from a steaming cup of coffee, your brain should interpret the aroma and taste after getting signals from your nose and taste buds and then tell you if it's hazelnut or French vanilla.

But if the brain misreads the signals, the steam might feel like a blast from a furnace and the coffee might taste bitter.
Occupational therapists have taken the lead in assessing and treating this disorder because sensory awareness and how it affects movement is their expertise, said Francie Dietrich, director of outpatient therapy at Mary Free Bed.

A. Jean Ayres was the occupational therapist who first researched and described sensory integration dysfunction. In her book, "Sensory Integration and the Child," Ayres writes that the disorder is like a "traffic jam" in the brain. Some pieces of sensory information get tied up in traffic, and that means parts of the brain don't get the information they need.

In some children, these stalled sensory signals make them crave stimulation. In Tori's brain, the signals caused normal sensations to hurt or feel unpleasant, so she tried to avoid them.

The problem can run in families. And symptoms can range from mild to severe, with no two people exactly alike, said Mechan, who has seen children as young as eight months and as old as 18. With treatment, most see improvement within several months.

Treatment works on the large muscles as well as fine motor skills, training the brain to properly read sensory signals. Tori performs coordination tasks while swinging on a platform or a "mushroom swing."

DeShane helped the Orents understand what the world was like for Tori.

"It would be like being in Central Park where there are a lot of muggings and rapes and you had to walk across the park alone at 2 a.m.," Orent said. "All your senses would be heightened. Well, that's the way Tori felt all the time."

DeShane sent Orent home early in Tori's therapy with a soft-bristled surgical scrub brush and instructions to brush Tori's arms, legs and back every two hours. She also applies deep pressure to her wrists, elbows, shoulders, ankles, knees and hips. DeShane told her the brushing and deep pressure causes a chemical reaction in the body that releases chemicals that are calming.

The chemical release can last from 90 minutes to two hours, Mechan said. And eventually the body becomes able to release more of that chemical on its own.

Orent admits she felt silly doing this at first, but she saw results the first week. "We didn't see how it was going to work, but all I know is, it worked. When I said it's time to get ready for preschool, Tori said, 'OK."'

The Orents still use the brushing twice a day. They also installed an indoor swing for her because swinging has a similar calming effect.

Dustin McClellan also uses brushing and deep pressure to keep himself calm. In public places, bear hugs from his parents will do it, too.

Deb McClellan tells anyone who will listen, "Do not accept a diagnosis of ADHD without a second opinion," and at least consider whether your child has some of the characteristics of DSI.

Treatment for DSI can make it less necessary for hyperactive children to be on medication, Mechan said. And if medication for ADHD isn't doing the job, parents should consider having the child assessed for DSI. A physician's referral is required.

Tori is fortunate that her sensory problems were discovered before she started school. And Dustin, who has some deficits from the head injury, is slowly rebuilding his self-esteem after years of feeling like "a bad kid."

"I was frustrated and angry," Dustin says of those early school years. "But I feel kind of good now because I have so many people who understand."

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Brain Undergoes Gains and Losses in Cognitive Abilities During Adolescence
http://www.newswise.com/articles/2002/4/BRAIN9.AAN.html


DENVER, CO -- The transition from childhood to adulthood means we gain some cognitive abilities, but lose others, according to a scientific paper presented at the American Academy of Neurology Annual Meeting in Denver, April 13-20. The conclusions from the relatively small study are preliminary.

"Humans gain an expansion in the scope and depth of knowledge and comprehension during adolescence," according to study author Gabrielle M. de Courten-Myers, MD, of the University of Cincinnati College of Medicine. "However, about the same time we lose some ability to acquire new sounds and speech patterns. In this regard, adults are more limited than children."

Researchers at studied the post-mortem cerebral cortexes of six 12- to 17-year-olds and five 17- to 24-year-olds. All of the individuals had been of normal health and intelligence.

They studied 43 different areas in each brain hemisphere, measuring for cortical thickness, neuronal density and pyramidal neuronal size. Corrections were made for gender differences in the size of the brain.

The average pyramidal soma size was 15.5 percent smaller in the older age group than in the younger one. This suggests that these nerve cells undergo "pruning" or "streamlining" of their processing during adolescence, said de Courten-Myers.

Other measures of the brain were slightly larger in the older age group, including cortical thickness (1.9 percent), neural density (1.8 percent), the number of neurons/standard cortical columns (3.8 percent), neuropil volume/standard cortical column (3.1 percent), and neuropil volume/neuron (1.3 percent).

The study was supported by the Foundation for the Prevention of and Research on Mental Retardation, Geneva, Switzerland.

The American Academy of Neurology, an association of 18,000 neurologists and neuroscience professionals, is dedicated to improving patient care through education and research. For more information about the American Academy of Neurology, visit its website at
http://www.aan.com

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Asperger's Remains Mostly a Mystery

http://www.brainconnection.com/SITEWare/2002/04/28/SPRV/0000-7108-KEYWORD.Missing.php3

Asperger's Remains Mostly a Mystery
The Spokesman Review
Stories by Jeanette White Staff writer
May 01, 2002


My child has what?
It's a question many parents ask when told a son or daughter has Asperger's syndrome. They've often never heard of the devastating neurological disorder, let alone known anyone else who lives with it. But that may be changing fast. In Spokane as well as the rest of the country, an increasing number of children are being diagnosed with Asperger's syndrome, a form of autism that wreaks havoc on one's emotional and social life.

These kids' brains are wired differently, making it hard to understand social cues and body language most people pick up instinctively. They may not notice a yawn, a frown or raised eyebrows. They may overlook jokes, or interrupt
constantly without thinking it rude. Yet because children with Asperger's are more verbal and tuned in to the world than those with classic autism, people sometimes think they're just socially inept or eccentric.

It's no wonder Asperger's syndrome seems to be sneaking up on society. Viennese pediatrician Hans Asperger first described the pattern of symptoms in 1944, but only eight years ago was it officially recognized by the American psychiatric community. Now, some experts believe it will outpace autism.

Inland Northwest teachers, doctors and parents are taking notice. Because the diagnosis is so new, they don't know how many children here have it. But professionals agree the numbers are rising. "Five years ago, I never got a call about Asperger's," said Mark Derby, a Gonzaga University psychologist who assesses children with severe behavior
disorders. "This year, I've had maybe 10 calls."

As children are diagnosed, educators struggle to find the best ways to teach them, said Peggy Davey, a speech-language pathologist in Spokane District 81 schools. "We're trying to become more expert in this area, because more and more of these kids are popping up."

The Autism Outreach Project, created by the Office of the Superintendent of Public Instruction, decided to count students with Asperger's because so many schools suddenly want help understanding it, said Crystal Gray. That count
isn't complete. Still, she said, "we recognize we're seeing an increased need in our schools."

Already, statistics show a sharp rise in autism among Washington school kids - from 436 in 1996 to 2,104 last year. In Spokane County, the numbers jumped from 25 to 138.
Why the increase in Asperger's syndrome? Better diagnosing and a growing awareness among doctors and parents contribute. Some doctors are also diagnosing children they believe were mislabeled in the first place, perhaps
with attention deficit disorder or something else with overlapping traits.

But as with classic autism, the exact cause of Asperger's isn't known. Some believe a genetic factor exists, while others suspect infections during pregnancy that affect the brain. Some people think vaccinations trigger the
disorder - a theory research disputes. Whatever the cause, research shows boys are diagnosed with Asperger's 10 times more often than girls.

Many children are diagnosed about the time they enter school and their social and sometimes physical awkwardness becomes obvious. While classmates chatter away, kids with Asperger's often have flat voices and stilted speech, as if
reciting or reading text. They may talk too much or not enough and almost solely about their interests, which can be extremely narrow. Some children want to talk about only elevators - how they work, various types, locations around town - or about computers, plumbing fixtures, VCRs or
baseball statistics. All kids do that, right? Not to this degree. The fixation can last for months or a lifetime. Compounding the problem, kids with Asperger's don't recognize others' boredom.

Physical awkwardness makes some kids stand out even more.
Glenn Tabbert, a 12-year-old Valley Christian School student, has been reading since age 3 and soars to the top level of computer games. "I do well in s-p-e-l-i-n-g," he said recently. But he's "not a recess person" and usually paces instead, Glenn said. "I dislike physical education. Even though I can lift about 20 to 30 kilograms, I have poor agility and poor endurance. After like 50 or 60 yards, I get tired."

Parents panic when they realize their kids, while having normal to high intelligence, don't attract friends or party invitations. It's worse when the children themselves begin to realize how different they are.

McCall Vaughn, a South Spokane student, describes her trouble fitting in: "When we're doing lessons, this one boy says, `Duh!' and gives me this weird look. Sometimes I do things wrong, and they yell at me and laugh at me. I
don't like it. In kickball, I don't know whose team I'm on because they fight over whose team I'm on."

Anxiety from not fitting in is common and can spiral to other problems, such as depression or obsessive-compulsive disorder. Making it worse, parents must educate teachers and classmates about Asperger's every time their child
switches classrooms. They explain again how sudden deviations from routine can spawn stress or tantrums.

"They're very confusing to most people because it appears they're in control of their behaviors and willfully misbehaving," said Tom Weddle, an education consultant who works with Asperger's students at several Inland Northwest
districts. "It's partly that their language skills and cognition are relatively intact."

Kids with Asperger's often end up in classrooms for children with behavior problems, which can make matters worse, said Weddle. Some districts are designing classrooms just for children with autism and Asperger's. Seattle has a program for kids with Asperger's syndrome and high-functioning autism. Central Valley School District has a preschool class for autistic kids. And in Kennewick, educators are designing a room where Asperger's students can get extra help with academic and social skills, said
autism specialist Carol Girard.

"Some of them need a quiet place to do work," said Girard. "Maybe it's a place to come take a break." If one group of parents, educators and medical professionals succeeds,
Spokane will become home to a new regional resource center for people with Asperger's syndrome and other disorders on the autism spectrum. The grass-roots group is considering what the center would cost and which organizations might fund and house it, said Dr. Peter Holden, a Spokane
developmental pediatrician.

"A lot of things that need to be done for these kids aren't being done very well," said Holden, who hopes the center would change that. It would provide training for parents and guidance for people looking for appropriate jobs and homes, said Dawn Sidell, who has an autistic son and is
spearheading the project. A child could be assessed there, or referred to specialists trained in autism and Asperger's.

"There are kids around here not being identified or being misidentified," said Elizabeth Mathes, director of the Panhandle Autism Society in North Idaho. "There's a few professionals regionally who know Asperger's well, but
they're few and far between and difficult for parents to find."

Families living with Asperger's say they desperately need the support. Some make their households as orderly as possible for their children, while others split up under the pressure. One Spokane woman changed her speech patterns
because her son took everything so literally. "It became the art of questioning and the art of speaking. Everything had to be 100 percent clear.

When there were no gray areas, our lives became easier. Our lives became pretty much clinical." At 21, her son now lives on his own and works in a restaurant. She feels
lucky. "We're highly educated, intelligent, don't do drugs or alcohol, had money and families to help (us). And we almost didn't make it. He almost didn't make it."

People with Asperger's syndrome are more likely to be depressed and even suicidal. But given proper guidance, they can go on to lead fairly normal lives. Like the restaurant worker, they learn to interact by modeling others. His mother recalls him saying: "What I do is study people. And then I just do what they do."

Most important, people with Asperger's need to find a lifestyle that fits. It may be easier for adults, with the teasing and peer pressure of school only a memory.

Sometimes, the obsession that annoys their friends secures their future. A child mesmerized by computers may become a talented programmer. Someone who memorized dog manuals front to back might make a meticulous groomer. "If we can get them graduated, educated and get them into adult niches, I'd say the prognosis is fair," said Derby.

(C) 2002 The Spokesman Review. via ProQuest Information and Learning Company; All Rights Reserved

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Standardized Tests and Students with an Autism Spectrum Disorder

 

What are standardized tests?

 

Standardized tests can include a variety of tasks designed to garner knowledge about an individual or groups knowledge, abilities or other traits. These sets of tasks are carefully assessed to ensure that they validly and reliably measure given characteristics.  Typically, this process involved administering the test to a sample of individuals who are representative of the population on whom the test will be used. Standardized tests may be administered individually or as a group.

 

A discussion of group administered standardized tests, such as the I-STEP, is certainly important but will not be addressed here.  Students scores on these tests have less impact on intervention and programming decisions for individual students. Often, group administered tests serve only as a screening procedure for referring students for special education eligibility assessments or, more obviously, for assessing the achievement of the school as a whole. Group administered assessments are rarely adequate for assessing an individual students academic performance. Because they were developed with the needs of individuals with autism in mind, standardized assessments used to diagnose Autism, such as the Autism Diagnostic Observation Schedule (ADOS) (Lord, Rutter, DiLavore & Risi, 2000) are also omitted from this discussion.

 

What are individually administered standardized tests?

 

Most state and local educational agencies require the use of individually administered standardized tests when making special education eligibility decisions.  Selected tests may include intelligence tests (which yield IQ or ability scores), academic tests (which measure achievement), and personality tests (which yield emotional or behavioral information).  It is the responsibility of the school psychologist to select which tests will best provide information to address the referral question. Once tests are selected, the school psychologist makes decisions about how to best administer the instrument and interpret the results. Standardized assessment tools have rigid administration guidelines. The obtained scores are only valid if these guidelines are followed.

 

What does this have to do with Autism?

 

For students with Autism spectrum disorders (ASD), standardized assessments present a host of difficulties. When testing children with ASD, it may be difficult or impossible to adhere to the administration guidelines and still elicit the students best performance.

 

Tests that are highly dependent on language comprehension, for example, may be biased against students with ASD (Watson & Marcus, 1999).  Specifically, tests that require lengthy verbal directions and verbal responses are almost always inappropriate. Even on the performance subtests, receptive language skills are required to understand the directions. The communication deficit faced by all students with ASD puts them at a disadvantage on tests dependent on receptive and expressive language use.

 

Other characteristics of Autism spectrum disorders affect the standardized testing situation. In addition to language skill deficits, a student with ASD may lack other skills required in the testing situation. Students with ASD, regardless of level of functioning, possess deficits in social skills. Standardized tests require some level of social interaction. It may be difficult to perform well on an individually administered assessment without reciprocal social interaction skills. Atypical interests, repetitive behaviors, stereotypic behaviors, disruptive behaviors, and inattention may further complicate the testing situation.

 

Arent there any alternatives to standardized tests?

 

Yes, school psychologists may choose to administer nonverbal intelligence assessments to students with ASD, rather than altering the standardized administration procedures or foregoing the procedure all together. The Test of Nonverbal Intelligence, 3rd Edition (TONI-3) is a valid and reliable alternative that does not require the examinee to read, write, speak, or listen. The Leiter International Performance Scale-Revised (Leiter-R; Roid & Miller, 1997) is another option.  The Leiter-R Roid & Miller, which does not require the student to use or to understand speech,  has few timed items and will not penalize students for slow responses. While these instruments do minimize the communication difficulties that may interfere with obtaining the students true score, they do require social interaction skills, attention to tasks, and other appropriate test taking behaviors that may be difficult for students with ASD.

 

At times, it may be possible for the psychologist to forego the use of standardized tests during the assessment process (i.e., when the school district does not require the use of tests).  Observations, interactions with the student, his teachers and parents, and other alternative sources of information may provide valuable information about areas of strength and areas needing improvement that can help guide the intervention and programming process.  Even when standardized assessments are used, these additional sources should be included in the assessment.

 

What modifications can psychologists make to accommodate students with ASD when standardized tests are used?

 

Examiner: Allow time to meet the student before entering the testing session. This may help to alleviate some anxiety and will allow you to better assess needed modifications.

 

Sensory: Consider the students sensory needs when conducting an assessment. For example, if he finds printed materials too visually stimulating, cover a portion so fewer problems are visible.

 

Routine: Testing involves a significant disruption in the students school day. For students on the Autism spectrum, such disruptions can be very distressing. Consider meeting with the student in advance of the testing session to introduce yourself and to explain the upcoming schedule change. If the student uses a schedule, work with the teacher to include the testing session on his/her daily itinerary.

 

Environment: If possible, administer the tests in a familiar environment for the student. Minimize all distractions. Open window blinds, noisy heating vents, unusual smells, and other environmental distractions may have a significant impact on the students scores.

 

Time: When possible, allow extra time for the student to finish items.

 

Directions: Consider the auditory processing delays of students with ASD. Standardized directions are often lengthy and confusing. This can be particularly problematic for children with receptive language difficulties. Make verbal directions as clear and concise as possible. It may be useful to use visual directions or prompts or to allow the student to respond with gestures or signs.

 

Motivation: To reduce the number of failures in a testing session, frequently intersperse new and challenging tasks with easier items. This may require administering items out of the standardized order or inserting nontest activities within subtests. It may also be helpful to use positive reinforcers to make the testing situation more motivating for the student.

 

Behavior: Koegel, Koegel & Smith [1997] suggest assessing whether the student exhibits certain behavior that may interfere with the testing situation and then using positive reinforcers to reduce the rate of the interfering behavior. For a student who engaged in the obsessive, self-stimulatory verbal behavior of speaking in a cartoon-likevoice, Koegel, Koegel and Smith allowed the voice only when responding to test stimuli.

 

The preceding modifications will likely improve the students performance. When administration of various intelligence assessments is altered to accommodate for motivation and attention variables, some students who previously scored in the mentally retarded range with standard administration can score in the average or low-average range of cognitive functioning (Koegel, Koegel & Smith, 1997).

 

Employing such strategies will break the standardization of the assessment took\l, and you cannot generate standard scores. The psychologist will, however, garner much information about the individual students strengths and areas for improvement information that will be crucial in making effective intervention and programming decisions.

 

References:

Koegel, L.K., Koegel, R. L. & Smith, A (1997). Variables related to differences in standardized test outcomes for children with ASD. Journal of Autism and Developmental Disorders, 27, 233-243.

 

Lord, C., Rutter, J., DiLavore, P.C. & Risi, S. (2000). Autism Diagnostic Observation Schedule (ADOS). Los Angeles: Western Psychological Services

 

Roid, G. H. & Miller, L.J. (1997). The Leiter International Performance Scale-Revised Edition. Lutz, Florida: Psychological Assessment Resources.

 

Watson, L. R. & Marcus, L.M. (1995). Diagnosis and assessment of preschool children. In E. Schopler & G. B. Mesibov (eds.). Diagnosis and assessment in ASD. (pp. 271-301). New York: Plenum Press.

 

Contributed by Rachel Loftin

Indiana Resource Center for Autism

Winter 2003 Volume 8, Number 2

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How to Determine If a Treatment Really Helped

Written by Stephen M. Edelson, Ph.D.
Center for the Study of Autism, Salem, Oregon

There are many types of interventions available today for autistic individuals, including nutritional, biomedical, educational, sensory, and behavioral. When beginning a new inter-vention, it is important to be as objective as possible to determine whether the treatment truly helped the person. If the treatment is not helping, then it does not make sense to continue it especially if it involves a great deal of time, money, or effort.

When deciding to try a new treatment, whether proven or not, here are a few tips to help determine whether the person may have improved from the specific treatment:

1. When a parent begins to learn about all of the various treatments given to autistic children, he/she sometimes tries many at once in order to see improvement as soon as possible. However, if the child improves after receiving several treatments, it will be impossible to determine which one(s) really made a difference. A general rule is to try a treatment for about two months before beginning a new one, to determine whether or not the treatment was helpful. However, if it is quite clear that the child improved from a treatment, even after a week or two, then another treatment can be started.

2. Parents should consider completing the Autism Treatment Evaluation Checklist (ATEC) monthly for a few months prior to the intervention and then monthly following the intervention. The ATEC was designed specially to evaluate treatment effectiveness. If improvement occurs due to maturation, then one typically sees gradual improvement over time. However, if there is a sharp improvement after the intervention is started, then the treatment may be helping. There is no charge for use of the ATEC. You can complete the checklist on the Internet at: www.autism.com/atec or obtain a hardcopy of the checklist by writing to the Autism Research Institute (4182 Adams Ave., San Diego, CA 92116; fax: 619-563-6840).

3. If at all possible, tell no one when a child starts a new treatment. This includes teachers, friends, neighbors, and relatives. If there is a noteworthy change in the child, it is likely that the people who come in contact with the child will say something about the improvement. It is also a good idea not to ask "Have you noticed any changes in my child?" In this way, any spontaneous statements regarding the childs improvement will be credible.

4. People who do know that the child received a specific treatment can, independently, compile a list of what changes they have noticed in the child. After a month or two, you can compare their observations. If similar changes are observed by different people, then there is a reasonable chance that these changes are real. It is important they these observations be written down; otherwise, when appropriate behaviors replace inappropriate ones, you may not remember what the childs behavior was like before the treatment, especially if the behavior was an undesirable one.

5. Parents and others should note in writing when the childs behavior surprises them. Basically, parents usually know how their child will respond in various situations; and once in a while, their child may do something that is unexpected. If a child improves soon after an intervention is begun, one can assume that the child will act differently than before; and his/her behavior will likely lead to more surprises than usual-hopefully good ones!

Some people suggest that parents should give their children only treatments for which there is ample research evidence to support their effectiveness. However, when a relatively new treatment is introduced, there will likely be a limited amount of research, if any, on its effectiveness. It takes, on average, 5 to 10 years to complete enough research to support or refute an interventions efficacy. Additionally, chances are fairly good that even after 10 years, the results will be mixed, because researchers often use different populations and assess changes using different measures. Be leery of any treatment if it has been around for ten or more years, and there are no research studies to support its effectiveness. For example, Ritalin is one of the most frequently prescribed treatments for autism, but we are not aware of any published studies supporting its effectiveness with this population.

Before trying a new treatment, learn as much as possible about the treatment. Rather than just focusing on positive reports, it is also important to seek out criticisms of the treatment. When evaluating conflicting claims, look to the nature of the studies and their methodologies--poorly conducted studies should not be given the same credence as methodologically sound research.

It is important to keep in mind that no treatment will help everyone with autism. Although one child may have improved dramatically from a certain treatment, another child, even with similar characteristics, may not benefit from the same treatment. Careful observation along with a critical perspective will allow parents and others to decide whether or not a treatment is truly beneficial.

[I would like to thank Dr. Bernard Rimland for his constructive comments on an earlier draft of this article.]

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This is a speech by a wonderful young man named Martin, a student in 5th grade. He presented this to his class to better help them understand Asperger's Syndrome.

Fitting In and Speaking Out: Me and Asperger's Syndrome

by Martin

Hello. I am Martin, of Ms. L's 5th grade class. Those of you who have been around me a lot have noticed that sometimes I act like I'm from another planet.

I may flap my hands, or not look at you when I talk, or not understand your hints or body language. Things you think are nothing may really upset me, and things you can ignore may distract me from the job at hand. I have trouble following a long string of instructions, but I can get so involved in a book that I don't realize I'm in a room full of active, noisy people. I seem uncoordinated or clumsy, yet I can talk forever about computers and video games.

During the past 6 years, some of you may have asked me why I do these things. I usually answered, "Don't ask", or "Ask my Mom". I didn't want to tell you the truth because I was afraid you'd misunderstand. But now I'm ready to explain, and I think you're ready to listen.

I have an abnormality in my brain called Asperger's Syndrome, which is a form of autism. No, I'm not crazy or retarded: My brain functions on a high level, just differently than yours. My senses work, but the information they sent to my brain can get misfiled, or come in on the wrong pathways. (Can you imagine "hearing" bright sunlight?). Sometimes, all the info from all my senses hits my brain all at once like a million radio stations playing at the same time, and I don't know how to filter out the junk and pay attention to what's important.

This gives me advantages and disadvantages. On the good side, I can be unbelievably smart at some things, like remembering different computer codes, or remembering dates and facts and trivia, or having different formulas for getting the right answers to math problems. I can read technical books written for adults, and "talk shop" with people at Dad's computer lab at work, sometimes even helping them solve programming problems.

On the bad side, I am prone to asthma, allergies, and thyroid problems. My muscles aren't strong or coordinated, I have trouble working in groups, and bullies use me as an easy target. I can't keep my desk and folders organized, I really hate being outdoors, and certain clothes just don't feel right and bug me to death. And sometimes, I just get overloaded and need to get away for a few minutes to find my center again.

I'm not asking you to feel sorry for me. Because if you pity me, you are also pitying all the great people like me, for example: Thomas Edison, Alexander Graham Bell, and Shatoshi Tijjaru (creator of Pokemon) who all have autistic traits.

We're not looking for a cure for Asperger's; just your understanding, and the understanding that comes from research. After all, if autism was cured, society would lose access to many of its great geniuses and inventors. We need you to accept us and be friends with us, while we learn to survive and be successful in your world.

I know there are lots of kids in our school with different levels of autism who are very lonely, and afraid of being made fun of. And I know you'll meet more autistics in middle school and beyond.

I'm asking you, in the future, to be more tolerant of autistic kids. Autism is a disability, like bad eyesight or deafness. And who knows? The person you are friends with in school may end up discovering an anti-gravity energy source, or develop the first physical-object transporter, like on Star Trek, or solve the world's hunger problem. Or, more likely, help you with trig or physics in high school!

Please take time at home to read the folder I'm giving out today. You'll be surprised who's on the list of famous people with Asperger's Syndrome! See if you can find Mark Twain and Jim Henson's names, and think about anyone else you can add to the list. (This list is incomplete, and being added to every day).

Finally, to the students and teachers here at Meadowland who took the time to care and be my friend, I end by saying "Thank you".

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Spotlight on Asperger's Syndrome
by Mike Stanton
published 8/12/2000

TWENTY years ago I was teaching a class to estimate length to the nearest centimetre and measure to check their answers. Jake was nearly in tears because all his answers were wrong... by one or two millimetres! Later, in a
spelling lesson, I livened it up with "naughty" words that broke the phonic rules. Jake was inconsolable. Words that broke the rules? How could that be?

I moved on to teach in a special school and forgot all about Jake. Then five years ago it was suggested that my ten year old son might have autism. I knew he was a perfectionist who took things literally, was obsessed with rules and prone to tantrums. But autism? I had taught children with autism. Many could not speak. They flapped and rocked. They showed scant regard for other people. Matthew was too bright, too sociable to be autistic. Or so I thought. I remembered Jake.

I started to read and discovered that these children have only recently been recognised. Now we have a name for their condition: Asperger's syndrome.

Autism was once thought rare, affecting fewer than five in 10,000. Those diagnosed usually had such severe problems that they needed specialist care and education. Today the National Autistic Society estimates that in the UK some 500,000 are affected, most of whom lie within the normal range of abilities and attend mainstream schools.

This broad range is best thought of as a spectrum. Classical autism, sometimes referred to as Kanner's autism after the psychiatrist who first described it in 1943, is at one end. At the other is Asperger's. Hans Asperger was a paediatrician who wrote about autism. His work did not achieve international recognition until after his death in 1980. Children with Asperger's syndrome are usually quite able and articulate but, like all children on the autistic spectrum, they share the triad of impairments.

1. Impairment in the social uses of language.

Children with Asperger's struggle with the everyday use of language. Their tendency to take things literally leads them to misunderstand jokes and slang. They can be very precise to the point of pedantry when answering questions but struggle to hold a conversation. As one young man described it, "I learned to speak before I learned to communicate."

2. Impairment in social understanding

The child with classical autism does not understand social interaction and often appears withdrawn. With Asperger's the child tries to understand and is often outward going and social in intent. But their social naivety leads to all sort of misunderstandings and they can make themselves very unpopular without understanding why.

3. Impairment of imagination

We all try to make sense of our world. This drive to create coherence often involves a leap of the imagination that is difficult for children with autism. They struggle to predict what might happen next or cope with novel situations on the basis of past experience. They rely instead on routines which may become elevated to the status of rituals that must be followed to the smallest detail. Overwhelmed by the extent of human knowledge, children with Asperger's often concentrate on a special interest which can dominate their lives to the exclusion of other activities.

Our education system is not geared to children with Asperger's. It is a neurological disorder, not a temporary psychological disturbance. People with Asperger's have brains that are differently wired. Experiments have shown that they use logic centres in the brain to work out daily life problems that we cope with automatically, using our social instinct.

They may become so good at using intelligence to compensate for their lack of social instinct that we may not notice. But life will always be a balancing act requiring immense concentration. It can be like permanently living on the edge of a nervous breakdown; the smallest thing can tip them over the edge and lead to rage or uncontrollable panic attacks.

You cannot use the remedial model to fix autism and then take the support away any more than you can give a pupil glasses then take them away because he can see. You have to accommodate their autism if these children are to experience real inclusion.

This is easier said than done. The culture of league tables and payment by results militates against creating an autism-friendly culture. The Secretary of State says he favours inclusion, but inclusion turns to exclusion if you insist on fitting square pegs into round holes instead of shaping the hole to the peg.

That is why many parents of children with Asperger's choose to home educate. Even when they have favorable experiences in primary schools the transition to secondary education, coinciding as it does with the trauma of adolescence, proves too much for many children. My own son became school phobic and only managed three terms in his first three years at secondary school.

Teachers are under enough pressure. I do not want to add to their burden. There are things we can do, however, to make life easier for our autistic pupils and ourselves:

a) Able students with autism need a lot of support in mainstream schools. The effects of their autism may be subtle but they are far reaching. My own son found all tests traumatic. We told him not to worry, just try his best. To Matthew, best meant 100 per cent. In trying to help we had made things worse.

People with Asperger's often experience problems with understanding verbal instructions. Repeating yourself only adds to the sensory overload they feel. Sending home written briefs for homework and assignments would do much
to ease these problems.

b) Their biggest problem at school is bullying. They may not even cope with normal peer group interactions without support.

Traditionally, support is classroom based, but they are most vulnerable in corridors and playgrounds. My own son suffered taunts of "psycho" and "schiz". He would be jostled or patted on the head. Girls would flirt with
him. If he responded he was cruelly rebuffed. If he ignored them he became "gay boy".

This is an equal opportunities issue. Children with Asperger's cannot hide their disability. Nor should they have to. A pupil in a wheelchair is afforded protection and other pupils made aware of their rights. All too often the person with Asperger's is expected to adjust their behaviour to pre-empt the bullying. We blame the victim.

3) Another problem is our attitude. We should try and understand the world from the pupil's point of view. They may come across as being disruptive or lazy when in fact they are struggling to cope with our failure to understand. Too often the pupil expresses a problem and our response is: "Try to be less autistic and the problem will go away."

Because children with Asperger's tend to be logical thinkers, it is tempting to try logic to argue them out of their autism. I know - I have been there with my son. Believe me it does not work like that! If it did we would have cured Asperger's syndrome by now.

Are there any reasons to be cheerful? Well, we parents of children with Asperger's know our stuff and want to help. Sometimes we are dismissed as being fussy or over protective. One reason I wrote my book ("Learning to Live With High Functioning Autism: a parent's guide for professionals") was so that professionals would listen to me. It worked! I wish they had listened three years ago when Matthew was housebound by fear. Childhood should not be a time of fear.

And all the time there is the pressure to conform from people who think they know best. But learning to live with autism is a two way street. We have a lot to learn from people with Asperger's. As Matthew once said: "My teachers think they know more about autism than me because they have been on a course. But I have been autistic all my life!"


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Asperger Syndrome
by Rosalyn Lord

Asperger Syndrome is a developmental disorder falling within the autistic spectrum affecting two-way social interaction, verbal and non-verbal communication and a reluctance to accept change, inflexibility of thought and to have all absorbing narrow areas of interest.

Individuals are usually extremely good on rote memory skills (facts, figures, dates, times etc.) Many excel in maths and science. There is a range of severity of symptoms within the syndrome, the very mildly affected child often goes undiagnosed and may just appear odd or eccentric.

Whilst Asperger Syndrome is much more common than Autism it is still a rare condition and few people, including professionals, will know about it much less have experience of it. It seems to affect more boys than girls. In general terms they find making friends difficult, not understanding the subtle clues needed to do so. They often use language in a slightly odd way and take literal meanings from what is read or heard. They are happiest with routines and a structured environment, finding it difficult to decide what to do they fall back on to their preferred activities. They love praise, winning and being first, but find loosing, imperfection and criticism very difficult to take. Bad behaviour often stems from an inability to communicate their frustrations and anxieties. They need love, tenderness, care, patience and understanding. Within this framework they seem to flourish.

Children with Asperger Syndrome are for the most part bright, happy and loving children. If we can help break through to their 'own little world' we can help them to cope a little better in society. They have a need to finish tasks they have started. Strategies can be developed to reduce the stress they experience at such times. Warnings that an activity is to finish in x minutes can help with older children. With younger children attempts to 'save' the task help - videoing a programme, mark in a book etc.,.

As the children mature some problems will get easier, but like all other children new problems will emerge. Some teenagers can feel the lack of friendships difficult to cope with as they try hard to make friends in their own way but find it hard to keep them. This is not always the case, many have friends who act as 'buddies' for long periods of time. Social skills will have to be taught in an effort for them to find a place in the world ... so take all opportunities to explain situations time and time again..... and one day.......it may work!

Please bear in mind that booklets such as this do tend to detail all the problems which can be found within a syndrome but that does not mean every child will have all of them. Each child will also have different levels of achievements and difficulties. They are after all just as the others ... individuals !

Is Asperger Syndrome The Same As Autism?

The debate on this question still continues, some experts say that Asperger Syndrome should be classified separately, others argue that the core difficulties are the same, only the degree to which they are seen in the children actually makes the difference. One expert - Uta Frith - has referred to Asperger children as 'Having a dash of Autism'.

Autism is often interpreted as a withdrawal from normal life - to live in the persons own fantasy world. This is no longer the real meaning of Autism. The severity of the impairments is much greater than in Asperger Syndrome, and often the child will have little or no language. Learning problems are more common in classic Autism. In Asperger Syndrome speech is usual and intelligence (cognitive ability) is usually average or even above average.

For the moment it is taken that the similarities are enough for both Autism and Asperger Syndrome to be considered within the same 'spectrum' of developmental disorders. Whilst a clear diagnosis is essential, it can change through life. The autistic traits seen in young children can often seem less severe as the child matures and learns strategies to cope with his/her difficulties.

Key Features

The main areas affected by Asperger Syndrome are:

Social interaction
Communication
Narrow interests / preoccupations
Repetitive routines / rituals, inflexibility

SOCIAL INTERACTION

Children with Asperger Syndrome have poor social skills. They can not read the social cues and, therefore, they don't give the right social and emotional responses. They can lack the desire to share information and experiences with others. These problems are less noticeable with parents and adults, but it leads to an inability to make age appropriate friends. This in turn can lead to frustration and subsequent behaviour problems. They find the world a confusing place. They are often alone; some are happy like this, others are not. They are more noticeably different among peer groups in unstructured settings i.e. playgrounds. Their naivete can cause them to be bullied and teased unless care is taken by assistants or buddies to integrate and help protect them. They can often focus on small details and fail to see the overall picture of what is happening in any situation.

COMMUNICATION

Both verbal and non-verbal communications pose problems. Spoken language is often not entirely understood, so it should be kept simple, to a level they can understand. Take care to be precise. Metaphors (non-literal expressions -'food for thought') and similes (figures of speech - 'as fit as a fiddle') have to be explained as children with Asperger Syndrome tend to make literal and concrete interpretations. Language acquisition - learning to speak - in some cases can be delayed. They make much use of phrases they have memorised, although they may not be used in the right context. A certain amount of translation may be needed in order to understand what they are trying to say.

Spoken language can sometimes be odd; perhaps they don't have the local accent or they are too loud for a situation or overly formal or speak in a monotonous tone. If the child with Asperger Syndrome has a good level of spoken language you must not assume their understanding is at the same level. Some talk incessantly (hyperverbal) often on a topic of interest only to themselves without knowing the boredom of the listener.

Difficulties in using the right words or forming conversations is part of semantic-pragmatic difficulties. They appear often to talk 'at' rather than 'to' you, giving information rather that holding proper conversations. Body language and facial expressions of a child with Asperger Syndrome can appear odd (stiff eye gaze rather than eye contact) and find 'reading' these things in others gives rise to further difficulties. Reading at an early age is known as Hyperlexia. Some children have remarkable reading abilities although you should check to see if they also understand the text.

NARROW INTERESTS/PREOCCUPATIONS

One of the hallmarks of Asperger Syndrome is the child's preoccupation (or obsession) with certain topics, often on themes of transport - trains in particular-or computers, dinosaurs, maps etc. These preoccupations, usually in intellectual areas, change over time but not in intensity, and maybe pursued to the exclusion of other activities.

REPETITIVE ROUTINES, RITUALS, INFLEXIBILITY

Children often impose rigid routine on themselves and those around them, from how they want things done, to what they will eat etc. It can be very frustrating for all concerned. Routines will change from time to time; as they mature they are perhaps a little easier to reason with. This inflexibility shows itself in other ways too, giving rise to difficulties with imaginative and creative thinking. The child tends to like the same old thing done in the same old way over and over again. They often can't see the point of a story or the connection between starting a task and what will be the result. They usually excel at rote memory - learning information without understanding, but it can still be an asset. Attempts should always be made to explain everything in a way they can understand. Don't assume because they parrot information back that they know what they are talking about.

EDUCATION

If the child with Asperger Syndrome is to be educated in a mainstream school it is important that the correct amount of support is made available. In order to get the correct support a Statement of Special Educational Needs should be drawn up from the various advice supplied by you and the specialists. This procedure, when it begins, can take 6 months and be a very stressful and confusing time - don't be afraid to contact people who can help; this need not be a professional it may just be someone who has done it all before.

It is beneficial if the school of your choice is willing to learn about the difficulties that they and the child will face, some schools are better than other on this score. Looking at several schools will give a better picture of exactly what is available. The support currently offered in mainstream schools is by Special Support Assistants (SSA) for a certain number of hours each week based on the child's needs in order to help the child access the curriculum and develop in a social setting. A support teacher with specialist knowledge of Autism should support the child, SSA, teacher and school in understanding and teaching the child. Other professional input may also be required such as speech and language therapy to help develop skills.

The home/school link is vital, a diary can prove invaluable giving two way communication on achievements and problems on a regular basis.

HELPFUL STRATEGIES

There are many things you can do to help your child better understand the world and in doing so make everyone's lives a little easier. The ideas below are only suggestions which you may or may not find helpful.

Keep all your speech simple - to a level they understand. Keep instructions simple ... for complicated jobs use lists or pictures. Try to get confirmation that they understand what you are talking about/or asking - don't rely on a stock yes or no. Explain why they should look at you when you speak to them.... encourage them, give lots of praise for any achievement - especially when they use a social skill without prompting. In some young children who appear not to listen - the act of 'singing' your words can have a beneficial effect. Limit any choices to two or three items. Limit their 'special interest' time to set amounts of time each day if you can.

Use turn taking activities as much as possible, not only in games but at home too.

Pre-warn them of any changes, and give warning prompts if you want them to finish a task... 'when you have coloured that in we are going shopping'. Try to build in some flexibility in their routine, if they learn early that things do change and often without warning - it can help. Don't always expect them to 'act their age'; they are usually immature and you should make some allowances for this.

Try to identify stress triggers - avoid them if possible -be ready to distract with some alternative 'come and see this...' etc.

Find a way of coping with behaviour problems - perhaps trying to ignore it if it's not too bad or hugging sometimes can help.

Promises and threats you make will have to be kept - so try not to make them too lightly.

Teach them some strategies for coping - telling people who are teasing perhaps to 'go away' or to breathe deeply and count to 20 if they feel the urge to cry in public.

Begin early to teach the difference between private and public places and actions, so that they can develop ways of coping with more complex social rules later in life.

Let them know that you love them - wart's an' all' - and that you are proud of them. It can be very easy with a child who rarely speaks not to tell them all the things you feel inside.

Remember, they are children just like the rest, they have their own personalities, abilities, likes and dislikes - they just need extra support, patience and understanding from everyone around them.


Rosalyn Lord is a parent of a child with Asperger Syndrome, living in the U.K.

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RAJARSHI "TITO" AND SOMA MUKHOPADHYAY:
AN INTERVIEW

Tito, aged 13, is from India, and although severely affected by autism and nearly non-verbal, he communicates eloquently through his writing. With the help and determination of his mother Soma, Tito has learned to communicate both by writing letters wit``h a pencil, and by typing them on a computer keyboard.

This interview took place at the recent Innovative Technologies for Autism Conference at the Stanford Research Center in Menlo Park, California, where Tito and his mother were presenters. Tito answered some questions by writing words one letter at a time on paper while Soma verbalized them, and others by typing letters on a computer keyboard.

Q: Soma, how did he learn to spell?

Soma: It started with the numbers on a calendar. Then pointing to letters on a board. Then spelling simple words.

Q: How did you learn to write, Tito?

Tito: I had to practice and it was slow.

Q: Can you read? Or is all your communication through hearing?

Tito: I try to read but I hear and understand better.

Q: How did you become connected with Cure Autism Now?

Soma: Portia (Iversen) learned about us from a doctor who she met at a conference, and she invited us from India last year for the Innovative Technologies for Autism Conference. We've been connected since then.

Q: And I believe you've been traveling in the US this year to meet scientists working on autism. How was that?

Tito: It is a very good time I am having because I am taking it very seriously.

Q: What would you like to say to other parents of children with autism?

Soma: Autism is not a disaster. It's nothing scary. Allow people with autism to be as they are, not slapping the hand as if it's something bad. They need their space and they need their dignity. So work on the good side. I do. I am working with some children here now, and I'm so excited about it. I never realized I would have this opportunity.

Q: Tito, I read your book of poems, and as a writer myself I was very moved by your work.

Tito: Will you find a publisher? I am very ambitious.

Soma: The National Autistic Society published his poems. But Tito wants to become a professional writer. He wrote a piece called Mindtree - suppose a tree has a mind, what would it think? What would it say? It may wish to move around, but it can't.

Tito: I like the language of English and wish to study it.

Q: What would you say to parents and children who don't have a voice like Tito?

Soma: That doesn't mean they are limited in language. Tito uses very little of audible speech, but he can communicate.

Q: What would you say to parents concerned about their children's hands flapping.

Soma: Let them flap. So what?

Tito: Why don't you do it!?

Soma: It's nothing to be ashamed of. Why should you stop them? Let people think what they like! They need to do that. It's important for them.

Tito: I need this movement to feel my body and it becomes necessary.

Q: Tito, what would you say to other children with autism?

Tito: Be proud and not be ashamed.

Q: How did you come to be proud and not ashamed?

Tito: I have been told constantly by mother, and never criticized.

Q: Thank you for sharing these thoughts and ideas.

Tito: I must thank you too for holding your patience.

More on Tito at his site. http://www.cureautismnow.org/tito

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This is an article well worth reading about invisible disAbilities in the education system.

Source url:
http://www.newhorizons.org/spneeds_nowak1.html


Pain, Waste, and the Hope for a Better Future..."Invisible Disabilities" in the Educational System
By: Margi Nowak, PhD


A few years ago, when my then pre-teen son and I went to Olympia to learn how to advocate for people with disabilities at one of the Advocacy Day Wednesdays held during the legislative session, I met a woman whose attempt to triumph over inexpressible pain stunned me to the point of mute but profound admiration. She was one of the people who acted as "lunchtime mentors" to those of us who had come for the day to introduce ourselves individually to our state representatives, and she was also the mother of a son who had died of Niemann-Pick Type C -- a hideously relentless neurological disease that inexorably kills male children who begin developing normally and then slowly lose all functions, inevitably deteriorating and dying before their teen years are over. Truly, this woman knew a kind of parental pain that the rest of us hope never to experience, let alone understand -- a pain which might be seen as being at the extreme end of a continuum embracing all manner of disabilities ranging from those that guarantee acute physical suffering and premature death, to those which are virtually invisible. Deeply grateful for my experiential ignorance of the former kind of disability affecting a child of mine, I am, however, very familiar with the latter kind of pain: being the mother of a child whose disability is hidden rather than obvious.

In extended family gatherings, in the classroom, in informal groups among age-peers, and in society in general, such children may at first glance appear to be "just like everyone else", for they use no wheelchairs, have no feeding tubes, and show no physical signs of pathology. But make no mistake about it: invisible neurological disabilities -- particularly those which give rise to behavior patterns that differ from the expected norm in ways that bring forth negative judgments about child and parents alike -- can indeed cause tremendous emotional pain for such children and their parents too.

As a member of an international on-line community focusing on one such disability, I have four years' experience reading the stories shared on a private listserv by hundreds of other parents as well as adults who themselves have the same neurological condition. I have also participated actively in a Washington State support group for people affected by another neurological condition, and I regularly read an online support newsgroup related to this disability too. In addition, I am also a cultural anthropologist and an educator who has created a course on disability at my university. My observations concerning the situation of children with invisible disabilities within the educational system are thus filtered through several different but complementary lenses: emotionally involved parent, theoretically informed researcher, pragmatically interested professor. No matter which way I look at the situation, however, my conclusion is the same: for such students and their families, the educational system is the site of far too much needless pain even as it wastes far too much human potential.

At the root of this unnecessary suffering and waste, I believe, is not simply "the bureaucracy", with all its entrenched, inflexible, and even Dilbert-like propensity to make positive and creative systemic (as opposed to incidental) change well-nigh impossible when proposed by relatively powerless people from "the bottom" of the system. In addition to this structural tendency for systems -- however terrible they might be for some individuals -- to stay basically the same as a whole, I believe there is also a corresponding ideological reason for this state of affairs. At issue here is the underlying question of expertise. The determination of what is "true" or "acceptable" or "best" in a particular social (or educational) system is typically made, in the end, by those with the power to make the determination "stick". In the words of a phrase suggested by Michel Foucault, these "regimes of truth" thus operate in an inherently circular manner, with the "legitimate knowledge" of the gatekeepers and decision-makers depending for its legitimacy on the assent of those whose "legitimate" expertise has put them into positions of power in the first place.

How does this translate into the real lives of students with invisible disabilities? Typically, it involves what their parents see as an almost unwinnable (even if not formally declared) battle between two competing camps of "experts": the bureaucratically and hierarchically organized school system, fighting to break even if not win a numbers game against the scarce resources and limitations of budget, space, personnel, technology, training, and even taxpayers' good or ill will toward public education, versus the comparatively tiny, desperately pieced together, much less "legitimate" circle of people who, for reasons of love, commitment, and sometimes money (for those families who can afford it), act as advocates for such a student.

The very first "campaign" of such a battle -- getting the child officially recognized as having a disability requiring special accommodations -- can confront the parents with an even more painful shock than the one they had to face when they initially recognized and acknowledged that indeed their child is "not normal". In the vast majority of cases, students with hidden disabilities are not labeled as such in their infancy. Rather, parents have to absorb, little by little, the painful fact that their child is undeniably "different" from other children in the family, neighborhood, day care center, play group, or preschool -- and that this difference is causing their child to be left out, humiliated, taken advantage of, and above all, negatively judged by children and adults alike. As difficult as it might be for parents to accept this reality and then try to move on and help their child navigate through life, if the disability in question happens to be one not well known by the general medical and educational community, the parents then have to face the second painful shock: doctors and educators typically do not appreciate being told by "mere parents" that their label for their child's difference (e.g. "behavior problem", or "attentional difficulties") is wrong or incomplete, and that "something else" is going on with this particular child.

In fact, "getting the proper label" can occupy years of the child's early educational career. To illustrate with one particular disability, Asperger Syndrome (a variant of high-functioning autism) is a neurobiological condition marked by, among other characteristics, serious social skill deficiencies, especially with age-peers. It is often accompanied by moderate to severe executive dysfunction -- that is, the individual can have enormous (and in some cases irremediable) difficulties planning, initiating, organizing, prioritizing, and completing required tasks. At the same time, however, many children with AS are highly verbal, especially with adults, and another characteristic of the disorder -- fascination with, and astonishing expertise concerning, a "special area of interest" (e.g. dinosaurs, sports statistics, trains, sharks, carnivorous plants) -- makes them seem, in their early educational years at any rate, like "little professors", hardly needing remedial academic attention.

And so, the stage is set: the parents, hearing the child come home from school day after day with tales of woe, especially from the "nightmare" periods of the school day for such a child -- recess and lunch -- see their child as having enormous needs for help and special consideration, while the teachers and other school personnel, seeing the same child reading considerably above grade level, often determine that the real problem here is an overprotective mother who refuses to allow her child to face the consequences of his inappropriate and blameworthy behavior.

In the meantime,the child, who, because of his "weirdness" in his peers' eyes, will inevitably have attracted the attention of "predator" types of students, will find himself set up again and again as "prey". This is the child who is the perfect "victim" for set-ups. His neurological wiring is very likely to make him hypersensitive to stimuli involving sounds and touch as well as to obsessive-compulsive "mental looping" over perceived injustices. A soft, insistently repeated noise, inaudible to the teacher but calculated to "unnerve the nerd", a tiny, personally meaningful object such as a special pencil, taken and "only borrowed" from such a student, a quick poke here, a "misplaced" lunch there -- and the "weird kid" can be counted upon to explode in what to the predators is a highly entertaining display of socially inappropriate, clumsily expressed rage.

Eventually, after such a student accumulates sufficient battle scars from such episodes, and attracts sufficient negative attention from teachers for "not turning in work", his parents' first campaign in their battle to secure some sort of accommodations for their child will be over: he will very likely become a "focus of concern". But the official, bureaucratically bestowed label he will probably receive at first is not likely to result in a placement or system of accommodations that special education or 504 law so ideally seems to promise. Instead, such a student will typically be squeezed into whatever existing places and services his school already provides for "kids with problems", and he is all too likely to be labeled as qualifying for these services on the basis of having some "other health impairment" such as severe behavior disorder (SBD), oppositional defiant disorder (ODD), or attention deficit disorder (ADD).

Such a label, typically involving at least partial-day placement in a "learning resource room" (LRC) will then, because of limitations of space and personnel, typically put the student in what one researcher of Asperger Syndrome has called "the worst possible environment for this type of child".

What this individual so desperately needs is constant, supportive, guided exposure to the very best peer-age role models in the school building, and what he often gets instead is a segregated experience with special-needs students whose different issues and problems make them the very last people on the planet likely to tolerate, much less nurture, the "Forrest Gumps" of the world.

If this all-too-typical train of events is not already depressing enough, it is, in addition, highly likely that at least some of the students with hidden disabilities such as Asperger Syndrome may also be gifted (even though their work output may still be "substandard" according to "normal" criteria such as grade averages). Here the personal tragedy of "wrong placement" is compounded by a sad and sorry waste: neither the student nor society in general is ever likely to benefit from what could be exceptional intellectual or artistic abilities. Instead, in these sorts of cases such talents will appear merely as quirky flashes of odd genius, garnering for their holder none of the specialized and sustained guidance needed for these gifts to develop to their full potential. All too often, school systems justify their refusal to let such students gain entry to special programs for the gifted and talented by citing the "normal" requirements, forgetting or ignoring the fact that for these students, life is never going to be "normal". Furthermore, what the gatekeepers often confuse in such situations is the difference between exceptional abilities and the "normal" display of these qualifications. Some disabilities, particularly those that involve executive dysfunction, mean that for the person's entire lifetime, his or her ability to meet certain standards of achievement is always going to be compromised. How sad for the school system to use one or several of the symptoms of an invisible disability -- which is emotionally painful enough as it is -- as justification for exclusion from what could otherwise, if done right, be a genuine avenue for success.

Even without the issue of giftedness complicating the situation of students with hidden disabilities, the problem of securing the "proper fit" between student and program typically involves endless and exhausting negotiations between home and school. While perceptive and caring individual teachers may, here and there throughout a particular student's career, make a tremendous difference in one or another classes such a student may take, the educational system as a whole is woefully unable to maximize the potential of all the "square pegs" who just cannot be made to fit into "round holes".

Privately, among themselves, many parents of children with such disabilities have often had furtive thoughts of wishing for a temporary switch: "Just for a few days, let them see my child in the body of a Stephen Hawking. Perhaps then maybe they'll notice that not all brain impairment equals intellectual impairment, and also, perhaps -- God forbid -- if my child looked so disabled, perhaps then we could then finally stop fighting to get appropriate services".

As more than one such parent has further observed, the prevailing wisdom among the battle-weary is that the decision-makers in educational system all too often wait for the child to fail (or the parents to threaten to take legal action) before finally deciding to allocate funds and resources to provide more appropriate accommodations. And, in line with the observation that educational bureaucracies operate as "regimes of truth" (with the legitimacy of the gate-keepers' power determined by the very same criteria of expertise that determine who gets to wield that power), the school system also controls the definition of what it means to "fail". A student whose disability severely impacts his ability to hand in homework "normally", but who is bright enough to pass standardized exit tests, will probably manage to squeak by and pass most of his required courses. And that student's parents, who fear, with every fiber of their being, that their child's eventual high school diploma will guarantee him virtually no viable future after they are dead, may plead and plead that the "failure" is taking place right now, but since their expertise as parents is structurally positioned at the bottom of the chain of decision-makers, their concerns and ideas have no effect on comprehensive, long-rang policy decisions.

Instead, such parents are "cooled out" by district-level administrators who listen but who are "tone-deaf" to hear, and worn down by the sheer number of steps required to secure the genuinely appropriate, system-wide (rather than haphazard and piecemeal) set of accommodations that would make all the difference for their child.

This is not what the law either intends or even permits. Section 504 as well as IEP law both provide ample legal grounds for the creation of truly individualized educational programs for students with disabilities, but if the disability in question happens to be one that is not familiar to school staff and administrators, and/or if the parents request accommodations that have never been heard of let alone tried before, the chances are almost certain that the only accommodations the child in question will have received by the time he or she exits the supposedly "free, appropriate public education" system will have been a patchwork of cobbled-together partial adjustments that have had to be hammered out anew every September, with each new year's slate of teachers taking at least three months to even begin to realize the extent of the disability's impact on educational performance. And when the vast majority of these teachers are indeed caring, capable educators, who often would help provide more appropriate accommodations -- if they had proper support from higher up the chain of command -- the waste of potential here is even more tragic.

A sadly perfect illustration of this tragedy (insightful planning, worthy intentions, and hard work never finding their mark) is the contrast between the wonderfully well-done IEP and 504-related material posted on the OSPI website -- in particular, the 67-page online brochure entitled "Ladders to Success: A Student's Guide to School After High School" http://www.k12.wa.us/specialed/transition/ladders.pdf. This is an Acrobat Reader file and it normally takes a long time to load.) -- and the shocking lack of mention if not awareness on the part of high school educational and administrative staff that this document (and more important, the impulse behind it) even exists. "Transition services" for special-needs high school students may be promised by law and described in hope-affirming words in official documents, but "in the trenches" no one seems to know much about this phrase, let alone how to implement it appropriately, when the student in question is not "seriously" or "obviously": disabled. Perhaps some gatekeepers to these kinds of services believe that preparing "these kinds" of special-needs students for a college and post-college career is an exercise in delusional thinking, but personal biographical stories shared in online support groups by bright, articulate adult "survivors" who have precisely these kinds of disabilities (invisible conditions that resulted in their being judged "incompetent"" and "lazy" themselves throughout their early school years) reveal the possibility of far more hopeful post-high school outcomes.

What would it take for these "hopeful outcomes" to become more of a reality? How could the pain and waste that is currently so operative in the lives of students with little-known, invisible disabilities be ameliorated?

Three related suggestions come immediately to mind:

All teachers and administrators (rather than only special-education experts) need more adequate training for dealing with the special needs of students with disabilities who are increasingly populating regular education classes. Clearly it is not possible for all teachers to be instructed in advance concerning all possible disabilities, but there needs to be a system-wide network of support for school personnel, beginning with an efficient, administratively-sanctioned "delivery system" of information, custom-tailored to address the particular strengths and weaknesses of each individual student identified as having special needs. Many parents try mightily to educate their child's teachers by filling their school mailboxes with relevant information gleaned from excellent, up-to-date Internet websites devoted to the disability in question, but with no legitimization given to this material "from the top of the bureaucracy", overworked teachers are likely to merely file these pages away for "future" reference.

Another key role for this administratively-sanctioned "information delivery system" could also be that of working to close the knowledge gaps that exist between those (typically, parents and advocates) who know what education law intends and promises, and those (typically, school personnel) who may actually be less knowledgeable in this respect, but who still control access to services.

Distinct from the special-education department in each school, and integrated within the entire complex of school programs, facilities, buildings, and personnel, there should be a permanent, daily, clearly recognized person, place and position (perhaps filled by social workers) to serve as an immediately-available resource for students whose special needs are likely to involve them in social misunderstandings and conflicts with others in the school. Such a person would be trained to serve as the student's advocate vis-à-vis teachers and students who do not understand the effect of the student's disability, and the room itself would serve as a "safe haven" for, among other things, the student's self-initiated removal from potentially explosive situations. "Parting out" such services ("If you're in a crisis situation on a Tuesday morning, go to the guidance counselor; if she's busy, wait for the assistant principal or make an appointment to see the school psychologist next week") engenders a feeling of wandering hopelessness for the student, which can quickly cancel out any previously-made gains in self-reliance and trust in others.

Legitimate recognition should be given to the hard-won expertise of parents regarding the complexities of their special-needs child. Of course professionally trained teachers and administrators have vastly more collective and pedagogical experience with thousands of students "who are not like this one", but the parents of a special-needs child have infinitely more experiential wisdom about what is likely to "work" or "cause more problems" with precisely "this one". While special education law is very clear about the crucial importance of incorporating parental input into such students' educational plans, the social and political realities of the status contestations and insecurities displayed at parent-teacher meetings greatly compromise the good intent of the law. What is important to recognize in the end, however, is that regardless if the parent is a suit-clad professional or a single mother who comes trembling to school meetings wearing sweat pants and an attitude, she, more than anyone else in that meeting room, is most likely to be locked on to the most important target of all underlying her child's education: providing the best possible answer to the question "What will happen to him when I'm no longer here?" All other educational goals and objectives pale in comparison to the need to address and continually keep in mind this absolutely fundamental priority.

For parents of children with disabilities, it is this question more than any other, which motivates them to keep persisting, through all the inevitable as well as sadly unnecessary pain and waste of potential, to fight for a better future.

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Although this specifies it's for Grandparents, I think this wonderful article will be of help to anyone trying to better understand the Asperger's child in their life.

Especially for Grandparents of Children With Asperger Syndrome
By Nancy Mucklow

If your grandchild has been newly diagnosed, then welcome to the world of Asperger Syndrome. It is a mysterious and sometimes overwhelming world, but it is not one to be afraid of. Even if you are saddened, disappointed or angry about the diagnosis, keep in mind that its for the best. The earlier the diagnosis, the earlier the intervention, and the better the prognosis in the long run.

For some grandparents, the news seems to come right out of the blue. Sure, there were difficulties at school - but then, school isnt as strict as it used to be. And yes, there were some problems at home, but none of them sounded like anything that good old-fashioned discipline couldnt solve. Why, then, do the parents seem to be clinging to this diagnosis as if it were a life-raft in the high seas? And why are counsellors, psychologists, occupational therapists and special education teachers suddenly getting involved?

Is this child really so different?

As grandparents, you have a lot of questions to sort out. But along with the confusion comes an opportunity to get involved where you are really needed. Children with Asperger Syndrome have a special need in their lives for safe people who won't criticize them or put them down for their differences. They need loving, non-judgmental grandparents who accept them as they are and make a place for them in their lives. If you can reach out to them, they will treasure your relationship with them for the rest of their lives.

I'VE READ ARTICLES ABOUT ASPERGER SYNDROME, BUT I STILL DON'T UNDERSTAND WHAT IT IS.

Asperger Syndrome is a type of autism, and autism is a neurological disorder that affects the way a person interacts with others and his or her world. Its not a mental illness, and it is not caused by weak parenting. In its more severe forms, its a disorder because it causes disorder in the life of the child. In its milder forms, it is more of a marked difference from the norm. In our culture, which judges people on the way they interact with others, these disorder-differences can have a profound impact on a persons life.

You've probably heard the parents complaining about the difficulties theyve had with the child in the home - obsessive behavior, irrational outbursts, wild fears, and irritability over the smallest issues. These problems are not misbehaviors, but rather the childs responses to an inability to comprehend what is going on around them and inside them. Some experts have called it a mind blindness, one that causes the person to stumble and bump into complex social situations that they can't see.
Yet by effectively blinding the mind to certain aspects of daily life, Asperger Syndrome enables the childs mind to focus in a way that most of us are incapable of. They feel their feelings more intensely, experience texture, temperature and taste more powerfully, and think their thoughts more single-mindedly. In many ways, this ability to focus is the great gift of Asperger Syndrome, and is the reason why a great number people with Asperger Syndrome have become gifted scientists, artists and musicians.

It is as if the Asperger brain is born speaking a different language. It can learn our language through careful instruction or self-instruction, but it will always retain its accent. While Asperger adults go on to successful careers and interesting lives, they will always be considered unusual people.

I'VE NEVER HEARD OF IT BEFORE.

That's not too surprising. Pediatricians dont study it in medical school, teachers dont learn about it in education college, and the mass media rarely covers it. Until the 1980s, the condition didnt even have a name, even though Hans Aspergers original work was done in the 1940s. It is only very recently that the condition has received much attention at all. However, as professionals are becoming more informed about the condition, they are discovering that there is a fair amount of Asperger Syndrome out there.

You may remember an odd child from your grade-school years - one that had no friends, who was always preoccupied with some obsessive interest that no one else cared about, who said the strangest things at the strangest times. Though the syndrome has only recently been named, these children have been living and growing up alongside other children for centuries. Some have become successful and happy as adults despite their undiagnosed problems, teaching themselves over time how to navigate around their deficits. Others have gone on to live lives of confusion and frustration, never understanding why the world didnt make much sense to them.

With the recognition of Asperger Syndrome, we now can give a new generation of Asperger children a chance at the same kind of life that other children have.

GREAT. SO HOW DO WE FIX IT?

We can't fix it. Despite all the marvels of modern science, there are still some problems that can't be cured. Nobody knows what causes Asperger Syndrome, though most scientists acknowledge a genetic factor. So the deficits your grandchild has can only be understood, minimized and worked around. They will require accommodating on everyones part. But in time, with proper programming, the childs behavior and understanding of the world should improve.

Specialized therapies for autism disorders are available, but in most cases, the parents must bear the full cost. This can cause tremendous financial strain on the family. In addition, while most regions require specialized programming for Asperger children, these programs are rarely sufficient for the childs needs. So the parents must fill in the gaps with their own home-made programming.

Drug therapies are also sometimes available in cases where extreme behavior needs to be controlled. But these drugs dont treat the cause of Asperger Syndrome. So even if some of the symptoms can be relieved with drugs, the central problems still remain.

A LOT OF KIDS HAVE THESE SORTS OF DIFFICULITES. IT'S JUST A PART OF GROWING UP, ISN'T IT? AFTER ALL, HE LOOKS PERFECTLY NORMAL TO ME.

He is normal. And he has the capacity to grow up to become a wonderful, normal adult - especially now that he has been diagnosed and is receiving special training. But he is normal with a difference.

The deficits that comprise Asperger Syndrome are not always readily apparent, especially in milder cases. The child is usually of average intelligence or higher, yet lacks what are essentially instincts for other children. If your grandchild seems perfectly normal despite the diagnosis you've been told about, then he is probably working very hard to make sure he fits in - and its not as easy as it looks.

It is best to treat your grandchild for what he is - normal. But be prepared to take some advice from those closest to him regarding what is the best way to handle certain situations.

It may not look like much to you, but Asperger Syndrome is a cause for concern. Its not at all the same thing as the sort of developmental delay that some children experience, and a professional trained in its diagnosis can determine the difference. Certainly misdiagnoses are possible. But in such cases, its always wiser to err on the side of caution. The wait-and-see method is risky when there is evidence suggesting a neurological problem.

SO WHAT IF SHE DOESN'T DO WHAT OTHER KIDS DO? SHE'S ADVANCED FOR HER AGE.

Unchildlike behavior doesnt mean that a child is too smart for play-dough and playgrounds. Even if she is smart, she still needs to learn the skills of play, because play is how children learn - about things, about life, and about each other. Precociousness is cute and is sometimes a source of pride for grandparents, but it is also often an indication that there is an underlying problem that needs to be addressed - and the earlier the better.

IF ASPERGER SYNDROME IS GENETIC, THEN DOES THAT MEAN WE HAVE IT TOO?

You might, or you might not. Usually at least one of the parents has some Asperger qualities to their personality, and so it seems likely that the same might be true of the grandparent generation.

But before you get defensive, remember that Asperger Syndrome shouldnt be regarded as a source of family shame. Its a difference more than a disorder. And we know it takes all kinds of people to make the world go around. Many famous people are believed to have had Asperger Syndrome, including Albert Einstein, Thomas Jefferson, Anton Bruckner, and Andy Warhol. It seems a touch of autism often brings out genius.

And that's not such a bad thing to have in the family!

WHAT IF I DON'T BELIEVE THE DIAGNOSIS?

That's your privilege. But keep in mind that the childs parents believe it. They live and work with the child daily and are in a unique position to notice the deficits. Because they care deeply about that childs future, they aren't concerned about the stigma of a label, as long as it means the child is eligible for the specialized programming she needs. They have put their pride aside for the sake of the child and expect the same from the rest of the family.

Consider carefully what could possibly be gained by refusing to believe the diagnosis. Then consider what could be lost. The parents are already living with a great deal more stress than other parents, and they dont need the added strain of skeptical or judgmental grandparents. Otherwise you may suddenly be faced with the pain of being unwelcome in your grandchilds home.

THE CHILD'S MOTHER LOOKS EXHAUSTED ALL THE TIME. COULD THAT BE A CAUSE?

Its more likely an effect. Consider what her life is like: she has to constantly monitor what is going on regarding her Asperger child, thwart anything that might trigger a meltdown, predict the childs reactions in all situations and respond immediately, look for opportunities to teach the child social behavior without creating a scene, and so on - every minute, every day. So its not surprising that she doesnt feel like sitting down for a cup of tea with you and making small talk!

The truth is that the majority of mothers of Asperger children struggle with depression. While the special services she will receive over the next few years should help in some ways, she will still be the one to deal with the day-to-day difficulties of raising an unusual child.

For many mothers, this means ceaseless work, often to the exclusion of their own needs. Their physical, mental and emotional exhaustion can have a profound effect on the health and happiness of the entire family.

For this reason, mothers of Asperger children need those closest to them to give their full, unconditional support, both in words and in action.

I'D LIKE TO HELP OUT AND GET INVOLVED. BUT MY SON AND HIS WIFE ALWAYS GET DEFENSIVE NO MATTER WHAT I SAY.

Your son and daughter-in-law are now so used to defending their child that it comes as second nature. Give them some time. Once they are more certain of your support, they will be less sensitive.

In the meantime, think carefully before you speak. Choose expressions that suggest sympathy and genuine curiosity, and avoid those that convey criticism. For example, instead of saying He looks perfectly normal to me, you can say Hes doing really well. Phrase ideas as questions, not judgments by saying Have you thought about rather than Its probably.

The most destructive things you can say are those that convey your lack of trust in their ability to parent, your disdain for the diagnosis, and your unwillingness to make accommodations. Here are some real-life examples gathered from mothers of Asperger children:

"Just let him spend more time with us. We'll whip him into shape!"
"She may act that way at home, but shes not going to do that in MY house!"
"He wouldnt act this way if you didnt work."
"I managed all by myself with four kids. You've just got two, and you can't handle them!"
"Don't believe everything those psychologists tell you."
"He'll just grow out of it, wait and see!"
"There's nothing wrong with her. You're making a mountain out of a molehill. Are you sure you're not the one that needs to see a psychologist?"
"He;s having all these problems because you took him out of school for that home-schooling nonsense."
"Everybody's got to have a problem with a fancy name these days!"
"All you ever do is complain about how hard your life is."

OUCH!

Keep in mind that parents of Asperger children face these hurtful, humiliating attitudes every day - from bus drivers to teachers, doctors to neighbors. Their tolerance level for such opinionated criticism is low, especially since they spend every bit of their energy raising their difficult child. So avoid insensitive comments at all costs. And if you unwittingly blurt out something the wrong way, be sure to apologize.

SO THEN WHAT CAN I DO FOR THEM?

Look for ways to be supportive. Let them know that there is another heart tugging at the load - and its yours. Keep on the lookout for articles about Asperger Syndrome and send them copies. This shows that you are interested. Ask lots of questions about the special programs the child is in. Be enthusiastic and optimistic. Let them know you think theyre doing a great job. At other times, be a sympathetic sounding board when they have difficult decisions to make, or when they just need to tell someone what an awful day theyve had.

If you live close by, consider how much you can help by giving the parents an evening out. If youre not certain how to handle the child on your own, then spend some time shadowing the parents to learn how to do it - or offer to babysit after the child is in bed. Whatever you can do to help will be appreciated.

WHAT DOES MY GRANDCHILD NEED FROM ME?

He needs to know that you are a safe haven in a bewildering world. It may seem a lot to ask to be flexible with a child who appears to be misbehaving, but inflexibility will only put distance between you and the child. If the childs manners and mannerisms drive you crazy, ask the parents for suggestions on how to set expectations for your house.

Learn to listen to the child when he says he doesnt want to do something. Maybe some children are happy to spend a couple of hours at a flea market, but think very carefully before dragging an Asperger child there. Accommodate to his needs, or you run the risk of ruining your time together.
When in doubt, ask the parents for advice.

But in general, just make the decision now that you will spend your time enjoying the child for what he is - a unique and unusual person. That annoying stubborn streak you see in him is going to be his greatest survival skill. And even though he seems to be afraid of just about anything, recognize that he is like a blind person - it takes tremendous courage for him just to walk through each day. Celebrate his courage and tenacity.

TO TELL THE TRUTH, I DON'T FEEL COMFORTABLE AROUND MY GRANDCHILD. I HAVE NO IDEA WHAT TO DO WHEN SHE ACTS IN HER ODD WAYS.

No one said it would be easy. But most Asperger kids are easiest to handle in one-on-one situations, so look for opportunities to go for walks or spend time in the workshed puttering around together. Tell your grandchild your stories, especially those that touch on aspects of her life affected by Asperger Syndrome. She will love hearing about the time when you were a girl that you blurted out the secret, or how difficult it was for you to learn to tie your shoes. You might tell her about times you wished you knew how to say something, or times when you wanted to be alone. Stories like these can create a powerful bond between you and your grandchild.

You may discover that all she wants to talk about is her pet subject. Dont despair. If its something you know nothing about, then this is an opportunity to learn something. Search for some magazine articles on the topic so that you always have something new to share together. In time, you may find that you have ideas for helping her expand her interests into other subjects. But even if you do nothing more than listen and share her enthusiasm for her favorite topic in the whole world, your grandchild will learn that Grandma cares.

When you spend time with her with other people or in public places, it might be helpful to think of yourself as a seeing-eye dog. Remember, she is blind in certain ways. Point out trouble-spots and guide her around them, explain social situations that she can't see, and narrate what you are doing as you do it. By doing so, youll help her to feel more secure with you, and youll be actively participating in her special programming.

One word of caution: watch the emotional levels. Asperger children often have great difficulty sorting out emotions. If you get angry, the child could lose control because she is unable to deal with your anger and her own confusion at the same time. Reign in your temper when the child is clumsy, stubborn, or frustrated. In situations where you feel you really need to be firm, keep your tone calm, your movements slow and even, and tell the child what youre going to do before you do it. Get advice from the parents how to deal with little meltdowns so that you are prepared in advance, but do your best to avoid triggering them.
Here are some simple DO's and DONT's to remember when spending time with your grandchild:

Do praise the child for his strengths.
Do get involved in the childs interests.
Do learn what sorts of activities are recommended for the child.
Do acknowledge the childs expressions of frustration.
Do respect the childs fears, even if they seem senseless.
Do control your anger.
Dont tell the child she will outgrow her difficulties.
Dont joke, tease, shame, threaten, or demean the child.
Dont talk to him as if he were stupid.
Dont compare him with his siblings.
Dont feel helpless - ask for help.

©Nancy Mucklow
The author, Nancy Mucklow, is a journalist and parent of a child who is diagnosed with Asperger Syndrome. She wrote this article in the hopes that it would be shared with grandparents of children diagnosed with AS. Please feel free to copy and share this article.

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YESTERDAY'S CHILD
Copyright © 1993, 1999 Janie Bowman


YESTERDAY's child was born in the 1800's. As a young boy, he was considered medically fragile. Every respiratory illness known to mankind in that age seemed to seize him. Even though YESTERDAY's childspent many of his early years ill, this did not stop his insatiable curiosity and boyish escapades. TODAY's child would be described as "just being a boy."

YESTERDAY's child often found himself in risky life-and-death situations. One time, around the age of five, this boy nearly drowned in a canal; and later he almost smothered as he sank into the depths of a grain elevator. TODAY's child would be described as "having no common sense."

YESTERDAY's child was found asleep in the barn in a nest he had constructed, lying on top of the chicken and goose eggs he was trying to hatch. TODAY's child would be called "weird, eccentric." "Get off those eggs, you'll crack them!"

YESTERDAY's child drove his parents to exhaustion by his persistent questioning of the world around him, determined to know the "whys," "what fors," and "what abouts" of his world. TODAY's child is searching for someone to ask the questions to.

YESTERDAY's child, with no malice aforethought but only out of the intense curiosity of an inquisitive mind, set his father's barn on fire. For this he was publicly thrashed by his father, who tried to instill in him the serious consequences of his actions. TODAY's child would be called a "juvenile delinquent."

After only three months of formal education, YESTERDAY's child walked out of his school in a fit of rage. Running home, he could hear the thoughts of the schoolmaster echoing in his head: "stupid.... stubborn...difficult." Thus, at the tender age of eight, YESTERDAY's child refused to return to school. The next day, YESTERDAY's mother gave the schoolmaster a piece of her mind and withdrew the boy from school. From that day onward, she became YESTERDAY's teacher. TODAY's child would be called "a problem child, a bad boy, oppositional." And TODAY's mother would be told she was "highly excitable, and coddling her child." She would be encouraged by all the experts to force her child to return to school because "He'll outgrow it. He's got to learn to adjust."

YESTERDAY's child went swimming with a friend in a nearby creek. When the friend didn't surface for air, YESTERDAY's child waited for what seemed like forever. As darkness fell, hein his own unique five-year-old logicconcluded that it was time to go home. As the town was trying to piece together the disappearance and drowning of his friend, YESTERDAY's child tried to explain how he waited for what seemed like forever..... TODAY's child would be treated for "Conduct Disorder" and undoubtedly find himself one step away from the juvenile justice system.

YESTERDAY's child just couldn't comprehend consequences; that much seems true. One day he attached wires to the tails of two cats and energetically rubbed their fur. This experiment in static electricity went astray when he was brutally clawed. In another instance, one unsuspecting childhood friend suffered an upset stomach after YESTERDAY's child gave him some sort of powder just to see if the resulting gas it produced would send him flying. TODAY's child would be in long-term therapy for Attention Deficit Hyperactivity Disorder, Pervasive Development Disorder, or some other behavioral disorder.

YESTERDAY's mother complained constantly about the life-threatening condition of his bedroom. Fearing for the safety of her family and any others who ventured into the family home, YESTERDAY's mother moved his experiments into the cellar. YESTERDAY's child called it his laboratory and immersed himself in science, to the exclusion of what other "normal" kids were doing at his age. TODAY's child would be called "Schizoid," and TODAY's family would be labeled "dysfunctional." TODAY's child would be spending time in a court-ordered alternative school program, meeting with a psychiatrist twice a week for therapy, and be attending a class to learn social skills.

At age twelve YESTERDAY's child insisted on going to work and began successfully earning his own wage. TODAY's child, at that age, would face a closed door to the world of mentorship in the workplace. TODAY's child would have to search beyond home and work for other avenues to have his abilities accepted and appreciated.

As you read about YESTERDAY's child, you are probably wondering how he could have survived and how he could have contributed to society in a positive way. Clearly, YESTERDAY's child had somebody who accepted his uniqueness, changed his environment to meet his needs, was not intimidated by his gifts, and tried sincerely to see the world through his eyes.

YESTERDAY's child's name is Thomas Alva Edison.

What is your child's name?


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The Times Christmas Appeal

 

BY HELEN RUMBELOW

 

CHRISTMAS is a notorious flashpoint for marital arguments, when women complain that their men do not understand their feelings and men claim that they do not know what all the fuss is about. By Boxing Day most rows are forgotten. But for the thousands of British women married to men with autism this state of tension is an extreme and lifelong problem leading to loneliness and despair.

 

One in 250 people has Aspergers syndrome, a type of autism that affects people of normal to very high intelligence. It affects about ten times as many men as women. Although the stereotype of autism is of isolated loners, many people with Aspergers get married without realizing that they have the condition. They often have so little concept of emotions that they do not realize that their partner is sad, even if they are sobbing, and then ignore it because they have no idea how to offer comfort. The emotional intimacy of a relationship, for many the reason that they married, is barely there. Some women feel as if they are going mad.

 

The National Autistic Society desperately needs money to offer diagnosis and support to couples affected by Aspergers and to transform the lives of their children. One of the biggest problems for those new to the condition is to understand how it differs from typical behaviour involving selfishness or egotism, according to Maxine Aston, the only Relate counsellor specialising in Aspergers.

 

The male chauvinist, or man behaving badly, has a choice: he can sit down and empathize with his wife, and he doesnt have to go to the football match. If he has been inconsiderate he has the capacity to recognize it and show remorse, she said. A person with Aspergers doesnt have a choice. Its not that they wont empathize, they cant.

 

Ms Aston was once married to a man with Aspergers, with whom she had three children. The Aspergers caused a complete breakdown of communication which prevented us from sorting out the problems we had, she said. But my husband was not diagnosed until the divorce.

 

Awareness is crucial. A first step in diagnosis is getting a Partners Pack from the National Autistic Society, she said.  It is the sense of loneliness which is the worst. Rachel Kruft Welton, 31, had been in a relationship with her husband, Nick, 41, for five years before they realized what was wrong.  Right from the first I knew he was a bit eccentric. He was the stereotype of an absent-minded professor, incredibly intelligent, but very absent-minded and lacking life skills, she said. When his awkwardness became difficult, a GP referred him to a specialist who made the diagnosis. If we hadnt had the diagnosis our marriage would have broken up, she said.  Before, if I was crying he would have sat on the other side of the room and just looked at me, and Id think: How can you pretend to love me and be so cruel? Now Ive taught him that if Im obviously upset he should hug me, although if Im looking just a bit down he may or may not notice. He is a very loving man, but he found it hard to show it. Now he works incredibly hard at making me happy.

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Wonderful item written by a Mom struggling to get across to her child's teacher just what he goes through every day.


Balancing the Tray
by Lenore Gerould (1996)

Those of us who have daily contact with children with Autism sometimes have trouble explaining to regular education teachers or administrators the hooks of autism; especially the kinds of support they need. You're always trying to explain the basics: No, moving the pencil sharpener's location in the classroom is not what upset Aim. You have to understand that...... No, you can't see autism, its a neurological disorder. Then, I came up with this analogy. Perhaps it will help others to visualize the support needed.

Try to imagine the child balancing a large serving tray on one upturned hand. Every distress for that child is like a liquid-filled glass you are putting on this tray. The distress glasses are unique to each child; but generally include things like auditory or visual over-stimulation, social interaction, surprises or unexpected changes in the schedule, lack of clear leadership, the number of people in the room, whatever is sensitive for that child. (Don't forget the ability to read the body English and anxiety of the adults around them!) The size and weight of the glass for that child varies; just like the distress glasses vary for each child. Some things are merely shot glass size, while others can be a two liter jug.

At some point the tray is going to start to wobble; the liquid will start spilling out of the glasses on the tray. The cues that this is happening will vary from child to child; just as the cause and size of a glass varies from child to child, but generally include regressive behavior, avoidance or shutting down, giggling or minor acting out to get attention.

Hopefully, someone will help the child rebalance the tray, or remove some glasses. Perhaps taking a break, or allowing time to refocus or process will work; again techniques are unique to each kid. If there is no intervention, the addition of one more glass will topple the tray to the floor.

The cause is not the most recent glass you added, but the fact that the tray was full or too heavy. The latter is why the child seems so unpredictable to some people. Our efforts should be that the child learns to hold a bigger tray, or to do minor correction of the tray's balance somewhat independently, but they will always carry that wobbling tray.

Ignoring cues can be disastrous, from classroom disruptions to a major regression. When an Autistic child's tray crashes to the floor, it is always a major event. Thats why if I hear my son got highly upset over a moved pencil sharpener and acted out, I do not want to hear that he has to learn to accept change. The sharpener is immaterial, if I learn that day he dealt with a substitute teacher, a fire drill just as reading was started, dead calculator batteries halfway through math, a crashed computer in the middle of English, a late bus so that he missed part of home room and some florescent lights in the class are half out----his tray was already full!

All of the distresses are unavoidable and he'd dealt with them without a hitch. But each was another glass on his tray. Autistic children need someone around who is familiar with them, to sense how full the tray is getting and read the cues, so there is intervention before that wobbling tray topples to the floor. That is why the type of support for these children is critical. Not just a hot body nearby, but the right hot body whom they can trust will help balance and who knows the hooks.

For all of us, life is a balancing act. But for Autistic children, the glasses generally break when they hit the floor and it takes a whole lot longer to clean up the mess and get a new tray.

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The following is a letter composed amidst the trials and tribulations of IEP planning and meetings. While the letter was inspired by a discussion a parent had with her child's Special Ed Teacher, it is actually an OPEN LETTER to anyone who interacts with children with challenges. The feelings are deep, and had been gestating within the author for 8 years (since her daughter's birth). The conversation which inspired the letter was one in which Jessica's teacher (of the past 4 years) referenced Jessica's level of "cognitive impairment".


VIOLETS and DAISIES  ~ by Kay Drais

Dear Teacher,

I know you hold a very deep and rich part of your heart open to all of the exception children that you laugh, cry, struggle and celebrate life with every day. Please do not construe this letter as personal criticism. I admire your commitment, tenacity and your love for the children you serve,and I have no doubt that you are a blessing in their lives. I write first, to be true to myself and my personal inspiration, and also because when you find something good in life, the only contribution available is to offer what one can, in the hopes that the good can grow ever more good.

When we talked on the phone, and you referred to "the level of cognitive impairment" of Jessica, I felt as though I had quite unexpectedly been washed away in a tidal wave of oblivion. I do not see Jessica as impaired.

I see her as different than most of us in gneral terms, but different is not impaired. Synonyms for impaired are defective, damaged, ruined, incapacitated, mutilated -- synonyms for different are distinct, non-uniform, differing dissimilar, unusual, uncommon. I prefer to believe, and my heart very clearly tells me that my daughter is uncommon, not defective.

I guess I had been working under the misconception that you, like me, did not put much stock in such labelling, and in fact, avoided such frighteningly limiting notions as lenses through which to view children.

Once I finally groped my way though my incredulous shock, my first impulse was to snatch up Jessica and RUN -- run as far and as fast as possible way from Jessica's school, far and fast away from what I consider to be a spiritually primitive educational system, and far and fast away from the fears, judgments and cynicism of people who simply do not understand my daughter. If being in school for Jessica requires being destined to face preconcieved notions of profound limitations on a daily basis, the quite simply, who needs it? I honestly believe she would be better off without it. Perhaps that is why she is so emphatically resistant to our efforts to "educate" her.

I quickly realized however, that running away is not the answer. For I would have to spend the rest of my life running from lack of understanding, and it is hard to change misunderstanding when one is clipping along at a fast and breathless sprint.

Instead, I ask you to please consider how deeply the images and concepts you hold of your children do, in fact, enter significantly into the equation of your relationship with them, and the natural outcome of that relationship.

Are you aware of the relatively new science of quantum physics? In the past 10 years, and ever more boldly, quantum physicists have been alerting the world to a fuller understanding of how profoundly the experimenter impacts the results of any experiment. In fact it is not possible for two people to perform exactly the same experiment and get exactly the same results.

Further, the same person cannot even repeat an experiment and get exactly the same results, despite exhausting efforts to ensure controlled environments, etc. The experimenter is affected by everything in his environment as well as all of his interpretations of it -- and all of *that* impacts the results of any activity or experiment he may participate in. We are all much more connected to our world, our experiences and one another than we have historically realized.

Jessica is not a mistake, she is a gift. Her greatest gift is that her apparent disabilities tend to highlight how we as individuals, communities and institutions tend to respond to that which we do not understand. Certainly it is comfortting and convenient to label the unknown as inferior/impaired in one fashion or another, because then it can be neatly set aside and life as we know it can be gotten on with.

People with apparent disablities stop us dead in our tracks. I know, because I was stopped dead in my tracks when I learned that Jessica was not-your-average newborn. However, I have come to understand that the way we respond to people who are different in any way, clearly reflects our own willingness to either expand our horizons, or to shrink back in fear. It is very clear to me now, that the manner in which we interface with people with apparent disablities is far more reflective of our own personal capacities than those of the person we interface with.

Institutions (and our educational system is an invested institution) tend to rely on conformity for survival. Often the reliance on conformity insidiously transforms into a need which can unfortunately (and often unconsciously) becomes a necessity. Necessary conformity is quite a stifling concept, if you allow yourself to consider the full ramifications.

I want to state for the record (in bold font) that I do not consider any IQ testing or similar instruments designed to measure capcities and potential to be *absolutely irrelevant* information regarding any portrayal of who Jessica is, or any other child, for that matter. I will not be easily convinced that a society who has not yet learned to live harmoniously together on a daily basis has the capacity to develop any meaningful instrument of measure of human potential.

In basic terms, the IQ testing measures *recognizable* capacity to *adapt* to preconcieved patterns as quickly as possible. What about imagination? What about spontaneity and creativity? What about personal integrity? To strive to conform or adapt to society as it functions today in general terms, would be to strive to learn to maniplate, live in fear,frustration, insensitivity and greed. I have no desire to adapt to that, and I am glad my daughter appears to have little interest as well.

SO WHAT DO I WANT? I want us to hold our judgments, interpretations and projections of each other ligthly. I want all of us to be brave enough to trust that the beauty and goodness of each of us is innate and sufficient, just as we are. I want myself and others to be patient with and accepting of Jessica's relationship with this realm, and to look for what we share and *celebrate* that, and to gift one another with our uniquenesses. I want myself and others to grow beyond a need to insist that our own particular version of life on earth is the only valid one, simply because we have chosen to adapt to common means linguistically and methodologically.

As far as I am concerned, unless someone can feel and convey genuine acceptance of Jessica exactly as she is right now, there will be no platform with any integrity upon which to build meaningful experiences of growth and unfoldment within Jessica personally, or in relationship to her.

Indulge me for a moment, and imagine yourself to be a violet growing smack dab in the middle of a beautiful bed of daisies -- and all of your (short) life, the multitude of daisies surrounding you seem frustrated that you are different. They try endlessly, and to the best of their abilities to turn your into a daisy, despite the fact that you, while very similar in many ways, are also very different than the other flowers who share your life. Would it serve you to try to be a daisy when it is clearly true that you aren't one, and never will be? How would it feel when the well-intentioned daisies around you continually insist that you look and act more like a daisy than the violet that you truly are? And, have you ever picked a violet and suddenly found yourself wishing that it were a daisy instead? Wouldn't you be glad of its' violetness, and that be sufficient, or rather exquisite, in and of itself?
Is it any different with people?

I imagine, dear teacher, your mind is now thinking, well, this world is predominantly of, for and by the daisies. And true, you have generously and with much self-sacrifice spent a good deal of your time patiently teaching the violet a few daisy tricks, so that she can function effectively in the daisy bed. After all, she is growing there. And my point is, that if she has to deny her essence as a violet, there is no value at all in learning daisy skills. If daisy skills, however are optional, and she can be accepted as the violet that she is, she will gracefully and sweetly unfold into the fullness of her beauty, warmed by the sun, and nurtured by the trust and open-heartedness of her surrounding daisies.

**Violets, beloved friend and teacher, are NOT impaired daisies.**

I thank you dear teacher, from the very essence my self, for your wondrous dedication to this fabulous boquet of children you have wlecomed into your heart.

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End of letter. I sent copies to the principal, the teachers of Jessica's mainstreamed classes, and the Director of Special Ed for the District we live in...

As I wrote the letter and later made corrections before sending it, I realized that the letter was also to myself-- as Jessica's mother and friend. I want to *be* what I am asking for.



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This document is invaluable. It really sends a message as to what spectrum children go through. When my son's speech therapist asked a group of teachers to participate in this experiment they all refused.


WHAT IS IT LIKE TO BE A STUDENT WITH AUTISM?

by Susan J. Moreno, M. A.,
Parent and Founder, MAAP Services Inc.

Many individuals with autism experience sensory perception problems. The information that an individual receives from some of his or her sensory information system may be an extreme of either too much or too little input from that sensory channel (hearing, sight, touch, taste, smell, or proprioception ). Or it may be that at whatever level the information is received, it is either inaccurate or distressing or both. None of us can know exactly what the sensory perceptions of other individuals is like. However, from personal accounts of individuals with autism, such as Temple Grandin, we do know that sensory perception and/or sensory processing are areas which frequently challenge and cause distress to many people who have autism. In different individuals different sensory channels are affected. For example, one individual may have great difficulty with input from touch and hearing, while another individual may have a problem with new or strong or certain specific types of smell. The list of variances could go on and on.

In an attempt to demonstrate to others who wish to become more aware of the challenges of autism and how it may feel to experience difficulty in processing sensory information, I developed what I call an "autism sensory simulation." I have used this simulation in demonstrations with students and teachers in various schools around the country. It is my belief that it has enhanced the empathy of those who experience it. However, I would like to emphasize that this demonstration illustrates what the sensory difficulties of the person with autism may be like. It does not let us know how it feels to be autistic. Autism involves many challenges -- not just those which affect sensory perception and processing. Only a person with autism knows how it really feels!

AUTISM SENSORY SIMULATION

Approximate time (per demonstration): 15 to 20 minutes.

Description: This simulation is intended to be a participatory demonstration of the experience of receiving distorted and/or distressing sensory information. The intent of this experience is to demonstrate to those not challenged with autism what the sensory receiving and processing difficulties of people with autism may be like. This demonstration is more effective if the number of participants is kept small -- around 10 - 15.

Required area and equipment: This simulation would need a room which could be darkened quickly and thoroughly and which would contain and/ or desks for each participant. At least two electrical outlets are needed. Obviously a school classroom would be ideal.

Other equipment: A strobe light, a radio of sufficient size and power to create loud noise levels, one cotton glove (either with velcro sewn on the pads of the fingers and the palms or with hard nubs on the pads and palms, as with some types of gardening gloves), and one loofah sponge mitt are needed.

* Participants enter the simulation room and are told to sit down in the chairs or desks provided.
* Participants are welcomed by the demonstrator and are told the basic intent of the demonstration.
* Participants are told to pretend they are a student who has autism who is in a new classroom.
* "Teacher" (demonstrator) introduces him/herself and says that participants must only follow a few simple rules to get along happily in their new classroom: sit still in their seats: follow simple directions and be reasonably quiet.
* The room lights are turned out, the strobe light is turned on, and the radio is turned on very loud at a point in between stations (to produce "white noise"). (All three events occur simultaneously.)
* "Teacher" greets each student by shaking his or her hand with the cotton glove and saying, "How are you? What is your name?"
* "Teacher" should constantly and drastically vary her voice level and manner of speaking and should place herself unusually close and unusually far from each person while speaking and shaking the "student's" hand.
* When "student" pulls back and/or jumps up or makes noise, "Teacher" pats his/her face with the dampened loofah sponge and screams, "It's all right! Don't be so nervous!"
"Teacher" proceeds with steps IV and V with each "student."
* When "Teacher" has finished with the last "student," he/she should clap his/ her hands, stamp his/ her foot, and should "stop!" At the exact same time, the lights should be turned back on and the radio and the strobe light should be turned off.
* "Teacher" says, "That's enough! This is the last straw. If you can't behave, you'll have to leave my classroom!"

Discussion then follows between the demonstrator and the participants about how this simulation affected the participants and how those feelings may be present for a person with autism in many situations which are not distressing to others. It is pointed out that this can result in difficulty in learning, paying attention, and behaving in a way that others deem appropriate.

CAUTION: Individuals who suspect they may be prone to seizures should not participate in this demonstration, as it could bring on seizural activity.

This simulation is written up in a small book I wrote called High Functioning Autism Individuals With Autism: Advice and Information for Parents and Others Who Care published by MAAP Services, Inc., P.O. Box 524, Crown Point, IN 46307


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"Blinded By Their Strengths: The Topsy-Turvy World of Asperger's Syndrome"
by: Diane Twachtman-Cullen, Ph.D., CCC-SLP


"I've come to the frightening conclusion that I am the decisive element in the classroom. As a teacher, I possess a tremendous power to make a child's life miserable or joyous... In all situations, it is my response that decides whether a crisis will be escalated or de-escalated and a child humanized or de-humanized." - Haim Ginott

Few could disagree with the sentiments expressed by Ginott, at least in theory. Unfortunately, theory doesn't always translate into practice, at least not for children with the enigmatic and complex disorder known as Asperger's Syndrome (AS). Thus, when a crisis occurs, or worse yet escalates, it is often the child who is held accountable, and the teacher who is exonerated!

Consultants are rarely asked to look at what the school staff needs to know and do to better understand and address the challenges that accompany Asperger's Syndrome. Rather, they are all too often directed to focus their efforts on "fixing" the child, as though his or her actions are the result of behavioral decisions, rather than the reflection of a neurological impairment.

Could it be that Ginott's words were intended only for teachers of typical children? That is most unlikely. Then what is there about AS that "invites" placing the burden of responsibility with respect to aberrant behavior on the children who manifest the disability, rather than on those who have the wherewithal to operate with far greater freedom and flexibility (i.e., their teachers or caregivers)?

One parent's search for answers to a particularly distressing school situation led her to characterize the plight of her 8 1/2 year old son with AS thusly: "The good news is he's bright, and the bad news is he's bright!" This revealing description makes a poignant, and sadly accurate statement about an educational system that not only fails to understand the child with Asperger's, it fails to recognize that such understanding is in fact necessary if positive change is to occur. An analysis of what this parent meant by her statement gives one a window on the topsy-turvy world of Asperger's syndrome.

In most disorders, descriptors such as "more able" and "high functioning" are excellent prognostic indicators. Hence, the good news. How then can intelligence be considered bad news? The answer to this question lies in the paradoxical nature of Asperger's syndrome itself.

Individuals with Asperger's are cognitively intact. That is, they possess normal, if not above-average intelligence. This creates an expectation for success. Further, the pursuit of their restricted repertoires of interests and activities often results in the amassing of impressive facts, and in an expertise beyond their years. Given their enormous strengths, and the expectation that they generate, and given the fact that intelligence is a highly-prized trait in our culture, intellectual prowess in the child with Asperger's syndrome virtually eclipses the social-emotional and other deficits that are at the heart of the unusual behavior and interests are often seen.

Stated more succinctly, unmindful of their neurologically-based weaknesses, teachers and/or clinicians get blinded by the strengths of these children. This situation inevitably leads to a mental set that can be summed up as follows: "If he/she is that smart, shouldn't he/she know better?" The answer to that question is a resounding "no". In fact, because of the social-emotional and communication deficits, as well as the presence of symptomatology unique to Asperger's syndrome, these children can't "know better" until they are taught simply to know (i.e., to understand).

Consequently, in order to create an hospitable environment for children with Asperger's syndrome in a world that is often inhospitable to their needs, it s vital that teachers and other caregivers employ direct teaching strategies to address the following specific areas:

Perspective-taking
Sociocommunicative understanding and expression
Reading/language comprehension
Executive dysfunction (i.e., problems in organizational skills/planning)
Problem solving

Together, these target areas constitute a kind of life skills curriculum for the more able student. Their inclusion in the student's IEP can help to ensure that each of these important skill areas gets the attention it deserves. After all, life skills are far too important to be left to chance!

Diane Twachtman-Cullen is a licensed speech-language pathologist specializing in autism and related disabilities. She holds a Sixth Year Diploma in early childhood education and a Ph.D in special education. She was recently the recipient of the Harris Kahn Dissertation Award for completing a doctoral dissertation of distinction. She is the author of *A Passion to Believe: The Facilitated Communication Phenomenon* to be published in the fall of 1996. A former two-term president of the Autism Society of Connecticut, she is an adjunct faculty member of Central Connecticut State University. A frequent workshop presenter, she also provides consulting services throughout the U.S. for individuals with autism and Asperger's Syndrome.

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Social Behavior in Autism
Written by Stephen M. Edelson, Ph.D.
Center for the Study of Autism, Salem, Oregon

One of the most characteristic symptoms of autism is a dysfunction in social behavior. Numerous reports written by parents and researchers have described this problem, and it is thought by many to be the key defining feature of autism. The social problems can be classified into three categories: socially avoidant, socially indifferent, and socially awkward.

Socially avoidant.
These individuals avoid virtually all forms of social interaction. The most common response is tantrumming and/or 'running away' when someone tries to interact with him/her. As infants, some are described as 'arching their back' from a caregiver to avoid contact. For many years, it was thought that this type of reaction to their social environment indicated that autistic individuals did not like or were fearful of people. Another theory, which is based on interviews with autistic adults, suggests that the problem may be due to hypersensitivity to certain sensory stimuli. For example, some state that a parent's voice hurt their ears; some describe the smell of their parents' perfume or cologne as offensive, and others describe pain when being touched or held.

Socially indifferent.
Individuals who are described as 'socially indifferent' do not seek social interaction with others (unless they want something), nor do they actively avoid social situations. They do not seem to mind being with people; but at the same time, they do not mind being by themselves. It is thought that this type of social behavior is common in the majority of autistic individuals. One theory is that autistic individuals do not obtain 'biochemical' pleasure from being with people. Research by Professor Jaak Panksepp at Bowling Green State University in Ohio has shown that beta-endorphins, an endogenous opiate-like substance in the brain, is released in animals during social behavior. Additionally, there is evidence that the beta-endorphin levels in autistic individuals is elevated so they do not need to rely on social interaction for pleasure. Some research on the drug, naltrexone, which blocks the action of beta-endorphins, has shown to increase social behavior.

Socially awkward.
These individuals may try very hard to have friends, but they cannot keep them. This problem is common among those with Asperger Syndrome. One reason for their failure to make enduring social relationships with others may be the lack of reciprocity in their interactions, since their conversations often revolve around themselves and are self-centered. Furthermore, they do not learn social skills and social taboos by observing others, and they often lack common sense when making social decisions.

In addition to the above three types of social deficits,the social cognition of autistic individuals may also be dysfunctional. Recent research has shown that many autistic individuals do not realize that other people have their own thoughts, plans, and points of view. They also appear to have difficulty understanding other people's beliefs, attitudes, and emotions. As a result, they may not be able to anticipate what others will say or do in various social situations. This has been termed as a lack of 'theory of mind.'

Treatment.
Sensory. If the problem appears to be due to hypersensitivity to sensory stimuli,sensory-based interventions may be helpful, such as auditory integration training, sensory integration, visual training, and Irlen lenses. Another strategy would be to remove these sensory intrusions from the person's environment.

Biomedical.
Naltrexone is usually not prescribed to improve social interaction; however,research studies and parent reports have often indicated improved social skills when given Vitamin B6 and magnesium, and/or dimethylglycine (DMG).

Social.
A treatment strategy to improve social behavior is using 'social stories,' developed by Carol Gray. This involves presenting short stories to teach socially appropriate behaviors. These stories are used to teach the individual to understand the behavior of themselves and others better.

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Understanding the Student With Asperger's Syndrome: Guidelines for Teachers

by: Karen Williams
University of Michigan Medical Center
Child and Adolescent Psychiatric Hospital

Copyright, June l995

Children diagnosed with Asperger syndrome present a special challenge in the educational milieu. This article provides teachers with descriptions of seven defining characteristics of Asperger syndrome, in addition to suggestions and strategies for addressing these symptoms in the classroom.

Behavioral and academic interventions based on the author's teaching experiences with children with Asperger syndrome are offered. Children diagnosed with Asperger syndrome (AS; see Note) present a special challenge in the educational milieu. Typically viewed as eccentric and peculiar by classmates, their inept social skills often cause them to be made victims of scapegoating. Clumsiness and an obsessive interest in obscure subjects add to their "odd" presentation.

Children with AS lack understanding of human relationships and the rules of social convention; they are naive and conspicuously lacking in common sense. Their inflexibility and inability to cope with change causes these individuals to be easily stressed and emotionally vulnerable. At the same time, children with AS (the majority of whom are boys) are often of average to above-average intelligence and have superior rote memories. Their single-minded pursuit of their interests can lead to great achievements later in life.

Asperger syndrome is considered a disorder at the higher end of the autistic continuum. Comparing individuals within this continuum, Van Krevelen (cited in Wing, l99l) noted that the low-functioning child with autism "lives in a world of his own," whereas the higher functioning child with autism "lives in our world but in his own way" (p.99). Naturally, not all children with AS are alike.

Just as each child with AS has his or her own unique personality, "typical" AS symptoms are manifested in ways specific to each individual. As a result, there is no exact recipe for classroom approaches that can be provided for every youngster with AS, just as no one educational method fits the needs of all children not afflicted with AS.

Following are descriptions of seven defining characteristics of Asperger syndrome, followed by suggestions and classroom strategies for addressing these symptoms. (Classroom interventions are illustrated with examples from my own teaching experiences at the University of Michigan Medical Center Child and Adolescent Psychiatric Hospital School.) These suggestions are offered only in the broadest sense and should be tailored to the unique needs of the individual student with AS.

Insistence on Sameness
Children with AS are easily overwhelmed by minimal change, are highly sensitive to environmental stressors, and sometimes engage in rituals. They are anxious and tend to worry obsessively when they do not know what to expect; stress, fatigue and sensory overload easily throw them off balance.

Programming Suggestions
- Provide a predictable and safe environment;
- Minimize transitions;
- Offer consistent daily routine: AS must understand each day's routine and know what to expect in order to be able to concentrate on the task at hand;
- Avoid surprises: Prepare the child thoroughly and in advance for special activities, altered schedules, or any other change in routine, regardless of how minimal;
- Allay fears of the unknown by exposing the child to the new activity, teacher, class, school, camp and so forth beforehand, and as soon as possible after he or she is informed of the change, to prevent obsessive worrying.(For instance, when the child with AS must change schools, he or she should meet the new teacher, tour the new school and be apprised of his or her routine in advance of actual attendance.

School assignments from the old school might be provided the first few days so that the routine is familiar to the child in the new environment. The receiving teacher might find out the child's special areas of interest and have related books or activities available on the child's first day.)

Impairment in Social Interaction
Children with AS show an inability to understand complex rules of social interaction; are naive; are extremely egocentric; may not like physical contact; talk at people instead of to them; do not understand jokes, irony or metaphors; use monotone or stilted, unnatural tone of voice; use inappropriate gaze and body language; are insensitive and lack tact; misinterpret social cues; cannot judge "social distance;" exhibit poor ability to initiate and sustain conversation; have well-developed speech but poor communication; are sometimes labeled "little professor" because speaking style is so adult-like and pedantic; are easily taken advantage of (do not perceive that others sometimes lie or trick them); and usually have a desire to be part of the social world.

Programming Suggestions
Protect the child from bullying and teasing; In the higher age groups, attempt to educate peers about the child with AS when social ineptness is severe by describing his or her social problems as a true disability. Praise classmates when they treat him or her with compassion. This task may prevent scapegoating, while promoting empathy and tolerance in the other children;

Emphasize the proficient academic skills of the child with AS by creating cooperative learning situations in which his or her reading skills, vocabulary, memory and so forth will be viewed as an asset by peers, thereby engendering acceptance; Most children with AS want friends but simply do not know how to interact. They should be taught how to react to social cues and be given repertoires of responses to use in various social situations. Teach the children what to say and how to say it. Model two-way interactions and let them role-play. These children's social judgment improves only after they have been taught rules that others pick up intuitively. One adult with AS noted that he had learned to "ape human behavior." A college professor with AS remarked that her quest to understand human interactions made her "feel like an anthropologist from Mars" (Sacks, l993, p.112);

Although they lack personal understanding of the emotions of others, children with AS can learn the correct way to respond. When they have been unintentionally insulting, tactless or insenstive, it must be explained to them why the response was inappropriate and what response would have been correct. Individuals with AS must learn social skills intellectually: They lack social instinct and intuition;

Older students with AS might benefit from a "buddy system." The teacher can educate a sensitive nondisabled classmate about the situation of the child with AS and seat them
next to each other. The classmate could look out for the child with AS on the bus, during recess, in the hallways and so forth, and attempt to include him or her in school activities.

Children with AS tend to be reclusive; thus the teacher must foster involvement with others. Encourage active socialization and limit time spent in isolated pursuit of interests. For instance, a teacher's aide seated at the lunch table could actively encourage the child with AS to participate in the conversation of his or her peers not only by soliciting his or her opinions and asking him questions, but also by subtly reinforcing other children who do the same.

Restricted Range of Interests
Children with AS have eccentric preoccupations or odd, intense fixations (sometimes obsessively collecting unusual things). They tend to relentlessly "lecture" on areas of interest; ask repetitive questions about interests; have trouble letting go of ideas; follow own inclinations regardless of external demands; and sometimes refuse to learn about anything outside their limited field of interest.

Programming Suggestions
Do not allow the child with AS to perseveratively discuss or ask questions about isolated interests. Limit this behavior by designating a specific time during the day when the child can talk about this. For example: A child with AS who was fixated on animals and had innumerable questions about a class pet turtle knew that he was allowed to ask these questions only during recesses. This was part of his daily routine and he quickly learned to stop himself when he begain asking these kinds of questions at other times of the day;

Use of positive reinforcement selectively directed to shape a desired behavior is the critical strategy for helping the child with AS (Dewey, 1991). These children respond to compliments (e.g., in the case of a relentless question-asker, the teacher might consistently praise him as soon as he pauses and congratulate him for allowing others to speak). These children should also be praised for simple, expected social behavior that is taken for granted in other children.

Some children with AS will not want to do assignments outside their area of interest. Firm expectations must be set for completion of classwork. It must be made very clear to the child with AS that he is not in control and that he must follow specific rules. At the same time, however, meet the children halfway by giving them opportunitites to pursue their own interests;

For particularly recalcitrant children, it may be necessary to initially individualize all assignments around their interest area (e.g., if the interest is dinosaurs, then offer grammar sentences, math word problems and reading and spelling tasks about dinosaurs). Gradually introduce other topics into assignments; Students can be given assignments that link their interest to the subject being studied. For example, during a social studies unit about a specific country, a child obsessed with trains might be assigned to research the modes of transportation used by people in that country;

Use the child's fixation as a way to broaden his or her repertoire of interests. For instance, during a unit on rain forests, the student with AS who was obsessed with animals was led to not only study rain forest animals but to also study the forest itself, as this was the animals' home. He was then motivated to learn about the local people who were forced to chop down the animals' forest habitat in order to survive.

Poor Concentration
Children with AS are often off task, distracted by internal stimuli; are very disorganized; have difficulty sustaining focus on classroom activities (often it is not that the attention is poor but, rather, that the focus is "odd" ; the individual with AS cannot figure out what is relevant [Happe, 1991], so attention is focused on irrelevant stimuli); tend to withdrawl into complex inner worlds in a manner much more intense than is typical of daydreaming and have difficulty learning in a group situation.

Programming Suggestions
A tremendous amount of regimented external structure must be provided if the child with AS is to be productive in the classroom. Assignments should be broken down into small units, and frequent teacher feedback and redirection should be offered;

Children with severe concentration problems benefit from timed work sessions. This helps them organize themselves. Classwork that is not completed within the time limit (or that is done carelessly) within the time limit must be made up during the child's own time (i.e., during recess or during the time used for pursuit of special interests).

Children with AS can sometimes be stubborn; they need firm expectations and a structured program that teaches them that compliance with rules leads to positive reinforcement (this kind of program motivates the child with AS to be productive, thus enhancing self-esteem and lowering stress levels, because the child sees himself as competent);

In the case of mainstreamed students with AS, poor concentration, slow clerical speed and severe disorganization may make it necessary to lessen his or her homework/classwork load and/or provide time in a resource room where a special education teacher can provide the additional structure the child needs to complete classwork and homework (some children with AS are so unable to concentrate that it places undue stress on parents to expect that they spend hours each night trying to get through homework with their child);

Seat the child with AS at the front of the class and direct frequent questions to him or her to help him or her attend to the lesson; Work out a nonverbal signal with the child (e.g., a gentle pat on the shoulder) for times when he or she is not attending; If a buddy system is used, sit the child's buddy next to him or her so the buddy can remind the child with AS to return to task or listen to the lesson;

The teacher must actively encourage the child with AS to leave his or her inner thoughts/fantasies behind and refocus on the real world. This is a constant battle, as the comfort of that inner world is believed to be much more attrative than anything in real life. For young children, even free play needs to be structured, because they can become so immersed in solitary, ritualized fantasy play that they lose touch with reality. Encouraging a child with AS to play a board game with one or two others under close supervision not only structures play but offers an opportunity to practice social skills.

Poor Motor Coordination
Children with AS are physically clumsy and awkward; have stiff, awkward gaits; are unsuccessful in games involving motor skills; and experience fine-motor deficits that can cause penmanship problems, slow clerical speed and affect their ability to draw.

Programming Suggestions
Refer the child with AS for adaptive physical education program if gross motor problems are severe; Involve the child with AS in a health/fitness curriculum in physical education, rather than in a competitive sports program;

Do not push the child to participate in competitive sports, as his or her poor motor coordination may only invite frustration and the teasing of team members. The child with AS lacks the social understanding of coordinating one's own actions with those of others on a team;

Children with AS may require a highly individualized cursive program that entails tracing and copying on paper, coupled with motor patterning on the blackboard. The teacher guides the child's hand repeatedly through the formation of letters and letter connections and also uses a verbal script. Once the child commits the script to memory, he or she can talk himself or herself through letter formations independently;

Younger children with AS benefit from guidelines drawn on paper that help them control the size and uniformity of the letters they write. This also forces them to take the time to write carefully;

When assigning timed units of work, make sure the child's slower writing speed is taken into account; Individuals with AS may need more than their peers to complete exams (taking exams in the resource room not only offer more time but would also provide the added structure and teacher redirection these children need to focus on the task at hand).

Academic Difficulties
Children with AS usually have average to above-average intelligence (especially in the verbal sphere) but lack high level thinking and comprehension skills. They tend to be very literal: Their images are concrete, and abstraction is poor. Their pedantic speaking style and impressive vocabularies give the false impression that they understand what they are talking about, when in reality they are merely parroting what they have heard or read.

The child with AS frequently has an excellent rote memory, but it is mechanical in nature; that is, the child may repond like a video that plays in set sequence. Problem-solving skills are poor.

Programming Suggestions
Provide a highly individualized academic program engineered to offer consistant successes. The child with AS needs great motivation to not follow his or her own impulses. Learning must be rewarding and not anxiety-provoking; Do not assume that children with AS understand something just because they parrot back what they have heard; Offer added explanation and try to simplify when lesson concepts are abstract; Captialize on these individuals' exceptional memory: Retaining factual information is frequently their forte;

Emotional nuances, multiple levels of meaning, and relationship issues as presented in novels will often not be understood; The writing assignments of individuals with AS are often repetitious, flit from one subject to the next, and contain incorrect word connotations. These children frequently do not know the difference between general knowledge and personal ideas and therefore assume the teacher will understand their sometimes abstruse expressions;

Children with AS often have excellent reading recognition skills, but language comprehension is weak. Do not assume they understand what they so fluently read; Academic work may be of poor quality because the child with AS is not motivated to exert effort in areas in which he or she is not interested. Very firm expectations must be set for the quality of work produced. Work executed within timed periods must be not only complete but done carefully. The child with AS should be expected to correct poorly executed classwork during recess or during the time he or she usually pursues his or her own interests.

Emotional Vulnerability
Children with Asperger Syndrome have the intelligence to compete in regular education but they often do not have the emotional resources to cope with the demands of the xlassroom. These children are easily stressed due to their inflexibility. Self-esteeem is low, and they are often very self-critical and unable to tolerate making mistakes. Individuals with AS, especially adolescents, may be prone to depression (a high percentage of depression in adults with AS has been documented).

Rage reactions/temper outbursts are common in response to stress/frustration. Children with AS rarely seem relaxed and are easily overwhelmed when things are not as their rigid views dicate they should be. Interacting with people and coping with the ordinary demands of everyday life take continual Herculean effort.

Programming Suggestions
Prevent outbursts by offering a high level of consistency. Prepare these children for changes in daily routine, to lower stress (see "Resistance to Change" section). Children
with AS frequently become fearful, angry, and upset in the face of forced or unexpected changes;

Teach the children how to cope when stress overwhelms him or her, to prevent outbursts. Help the child write a list of very concrete steps that can be followed when he or she becomes upset (e.g., 1-Breathe deeply three times; 2-Count the fingers on your right hand slowly three times; 3-Ask to see the special education teacher, etc.).

Include a ritualized behavior that the child finds comforting on the list. Write these steps on a card that is placed in the child's pocket so that they are always readily available;

Affect as reflected in the teacher's voice should be kept to a minimum. Be calm, predictable, and matter-of-fact in interactions with the child with AS, while clearly indicating compassion and patience. Hans Asperger (1991), the psychiatrist for whom this syndrome is named, remarked that "the teacher who does not understand that it is necessary to teach children [with AS] seemingly obvious things will feel impatient and irritated" (p.57);

Do not expect the child with AS to acknowledge that he or she is sad/depressed. In the same way that they cannot perceive the feelings of others, these children can also be unaware of their own feelings. They often cover up their depression and deny its symptoms; Teachers must be alert to changes in behavior that may indicate depression, such as even greater levels of disorganization, inattentiveness, and isolation; decreased stress threshold; chronic fatigure; crying; suicidal remarks; and so on. Do not accept the child's assessment in these cases that he or she is "OK". Report symptoms to the child's therapist or make a mental health referral so that the child can be evaluated for depression and receive treatment if this is needed.

Because these children are often unable to assess their own emotions and cannot seek comfort from others, it is critical that depression be diagnosed quickly; Be aware that adolescents with AS are especially prone to depression.

Social skills are highly valued in adolescence and the student with AS realizes he or she is different and has difficulty forming normal relationships. Academic work often becomes more abstract, and the adolescent with AS finds assignments more difficult and complex. In one case, teachers noted that an adolescent with AS was no longer crying over math assignments and therefore believed that he was coping much better. In reality, his subsequent descreased organization and productivity in math was believed to be function of his escaping further into his inner world to avoid the math, and thus he was not coping well at all;

It is critical that adolescents with AS who are mainstreamed have an identified support staff member with whom they can check in at least once daily. This person can assess how well he or she is coping by meeting with him or her daily and gathering observations from other teachers; Children with AS must receive academic assistance as soon as difficulties in a particular area are noted. These children are quickly overwhelmed and react much more severely to failure than do other children;

Children with AS who are very fragile emotionally may need placement in a highly structured special education classroom that can offer individualized academic program. These children require a learning environment in which they see themselves as competent and productive. Accordingly, keeping them in the mainstream, where they cannot grasp concepts or complete assignments, serves only to lower their self-concept, increase their withdrawl, and set the stage for a depressive disorder. (In some situations, a personal aide can be assigned to the child with AS rather than special education placement. The aide offers affective support, structure and consistent feedback.)

Children with Asperger's syndrome are so easily overwhelmed by environmental stressors, and have such profound impairment in the ability to form interpersonal relationships, that it is no wonder they give the impression of"fragile vulnerability and a pathetic childishness" (Wing, 1981, p. 117). Everard (1976)wrote that when these youngsters are compared with their nondisabled peers, "one is instantly aware of how different they are and the enormous effort they have to make to live in a world where no concessions are made and where they are expected to conform" (p.2).

Teachers can play a vital role in helping children with AS learn to negotiate the world around them. Because children with AS are frequently unable to express their fears and anxieties, it is up to significant adults to make it worthwhile for them to leave their safe inner fantasy lives for the uncertainties of the external world. Professionals who work with these youngsters in schools must provide the external structure, organization, and stability that they lack.

Using creative teaching strategies with individuals suffering from Asperger syndrome is critical, not only to facilitate academic success, but also to help them feel less alienated from other human beings and less overwhelmed by the ordinary demands of everyday life.

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"Five Survival Strategies To Help Children With Asperger's Syndrome Overcome Inertia"
by George T. Lynn, M.A., C.M.H.C.

The Aspergers child may have a powerful predisposition to inertia especially when he is stressed or tired. This profound lack of energy or ability to initiate action is seen in the child's school, home, and social life.

Inertia may prevent the AS child from being able to get out the door to school. If his parents do get him to school he freezes up when he has to make social contact with other kids sitting at a table in the lunchroom. He is stuck in the corner of the room and has to be gently guided out by a teacher. Feeling totally overwhelmed, he ends up staring straight ahead and cannot remember what hes supposed to do next. When his teacher addresses him he grunts out a reply but does not return to his work. He may have a very difficult time telling his teachers what he needs and he tends to be passive in the face of their criticism. He cringes at his PE teacher's verbal abuse and does not report it.

In a social setting, he is rarely the first one to initiate a social contact and needs to see someone else doing it first. Inertia may interfere with the performance of ordinary tasks at home. One of my teenage AS clients has a great enjoyment of cooking, but he has great difficulty maintaining the sense of flow and sequences required to put together a recipe. He often totally "spaces out." At these times, he told me, his body slows almost to stopping and he will stare at the recipe as if he is waiting for it to somehow come to him.

One Aspergers boy I worked with was badly beaten up by several teenage muggers at a bus stop at night because, though he was proficient in Karate, he was not able to initiate the attack and carry it through in a setting different from where he was trained."Go ahead. You initiate," he said to one of his muggers who proceeded to beat the stuffing out of him. It did not occur to him that the only way he could prevail in the situation was to close in and attack aggressively, once it was clear that he was gravely threatened. And it did not occur to him that he was not encountering the other kids in the safety of his dojo, under the supervision of his teacher. His inability to initiate action was complicated by his inability to have a practical or adaptive response to the kids threatening him.

This lack of ability to initiate activity probably relates to the fact that Aspergers kids may be deeply apraxic when it comes to affective, cognitive, and behavioral tasks. That is they do not automatically visualize how movements will look, what conversation with others might sound like, or generally what will happen in the future. Having no way of seeing the potential future, the child cannot plan his present action and so does nothing.

"Normal" people continually feed themselves flashes of images of the next movement a split second before the movement happens. The child with Asperger's Syndrome may lack this awareness. As a result he is slowed in movement to the point of not moving at all.

He does not know why he cannot accomplish things and will seem bewildered when you ask him about it. Because of his learning differences everything in his life is frustrating to him and he is getting nothing but failure experience.

This predilection for inertia is not a sentence of permanent institutionalization for the child but is an indication that his learning curve is different from normal children.

For example, Aspergers children may become very proficient in the martial arts, but they usually have to be shown every move that is possible and have to physically rehearse every move. (Including their response to situations on the street-training which would have helped the child described above.) To learn how to play baseball, the child has to be taken physically through each position on the field and be coached through the movements of the player of that position much the way you would coach someone who is learning a dance. Once the child learns the feel of a movement, he may become splendid at its enactment, but the training process can take a long time.

Here are five survival strategies to help him realize his gifts and reduce the challenges posed by his attentional differences.

Consult with him to find ways to reduce the stress that he experiences. Talk to him about what is going on at school or on the job. Aspergers children tend to be very proud. If they cannot follow along in a class (because of the wrong teaching methods), they may attempt to resolve the issue by just refusing to get on the bus in the morning. Its easier to say "hell no I wont go" then to say "I feel stupid not being able to do the work. Help me!" If they cannot keep up the pace in a job that requires tight teamwork, they are apt to throw down their apron and leave in a fit of anger and frustration.

Use a prearranged touch prompt. In the example above of the boy who had the debilitating "space outs" while cooking, I suggested that his parents help him keep on track by touching him firmly on the shoulder (a place where he could tolerate strong touch) while suggesting the next step he needs to accomplish in the recipe. A good prompt should provide just the right amount of verbal and tactile stimulation along with a clear and concrete suggestion for the next step stated in visual terms: "O.K. Stephen,looks like you need to open the recipe box and look up the card for oatmeal cookies."

Lead from behind. To reduce inertia you have to get in the habit of following behind the child somewhat. You go at his speed. If he stops, you stop and get into a consulting role with him. "Jeremy, youre doing great work getting out the door. You looking for something right now?" Curb your
own anger, take a breath, and bridge to his issue. Give him the time that he needs.

Help him calm by pacing his breathing. If he freezes up and cant get out the door to take the bus over to his friends house for a birthday party, ask him what you can do to help. If he does not answer, assume that he is experiencing anxiety, and that though he seems serene and very still on the outside, his mind is racing at break-neck speed on the inside. Just sit next to him calmly and let your relaxed pace of breathing relax his. Tell him whatever you think he needs to hear to be more relaxed and then get back to helping him to the next step when he is in a better place to hear.

Teach him binary decision-making. One of the most powerful causes for inertia is the feeling of the Aspergers child that some task is so vast and complex that he cant possibly accomplish it. To overcome this barrier, teach him how to factor any problem into two decisions. He makes one of those decisions and then factors the next part of the issue into two more decisions, and makes one of these decisions until the job is done.

If you want to get him to clean up his room, have him first make two piles. One pile is for things that stay. One pile is for throwaways. When hes down to the pile for things that stay, divide it into one pile for clothes and one pile for electronic parts.

When this is done, take each pile in turn. In the electronic parts pile, put all parts that pertain to current projects on one shelf and all parts from past projects on another,and so forth. He needs a very concrete way to work from the whole to the parts. Its easier to get going on things if he deliberately uses the "yes/no", "zero/one," language of binary code to break the problem into manageable chunks.

Children with Asperger's Syndrome will often show powerful gifts in the scientific, technical, or artistic fields. Their gifts are essential to the growth and development of our culture. Luminaries in recent history who have shown Asperger's-like traits include Albert Einstein, the great Bach interpreter, Glenn Gould, and many of the modern inventive geniuses in the computer industry. It is hard to measure the contributions of people with this perceptual style because they are often very self-effacing and publicity shy.

But the anxiety and inertia that kids with AS experience can stifle their lives and give them only a mediocre return on their potential. Helping them overcome inertia may take many years, but each little step forward strengthens the child's ability across the board.

Copyright 1999



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Resource: http://www.sasked.gov.sk.ca/curr_inst/speced/educate.html

EDUCATING THE STUDENT WITH AUTISM

Developing the Personal Program Plan

Children with autism present with differences in learning style, impairments in communication and social skill development, and the presence of challenging behaviors. However, there is considerable individual variability in how these characteristics are manifested. There is no specific curriculum to teach students with autism. Effective programs are individualized and based on the unique needs and abilities of each student. The students personal program plan will include a combination of objectives from the regular curriculum as well as objectives that are unique to the individual.

Saskatchewan Education suggests that a Personal Progam Plan PPP) be developed through collaboration by a team of people directly involved with the student, including the parents, classroom teacher, special educator, teacher assistant, speech language pathologist, consultant, educational psychologist and the student, where appropriate.

The written program plan is intended to guide the day-to-day work of the educators and to provide information on the types of adaptations and strategies that will be used to accommodate the student. The program components are:

- Personal and educational data, including assessment information
- Identification of the students strengths and needs
- Long-term goals and short-term objectives. This typically includes goals and objectives related to the regular curricular areas and within the main developmental domains.

For the student with autism/PDD, the key curricular areas are:
- communication development including the development of expressive skills through speech and/or augmentative systems, development of receptive language, and pragmatic skills
- academic instruction appropriate to the developmental level of the student
- increasing understanding of the environment
- developing social skills and behaviors appropriate to a variety of contexts and situations
- increasing and developing self control and self-management

Resources and strategies that will be used in working toward the goals/objectives

- Assignment of responsibility for carrying out specific aspects of the plan
- A process for review and evaluation of the plan.
- The Personal Program Plan is not intended to provide the daily plan of instruction for the student. Rather, it provides an outline of the curricular goals for that individual student, the adaptations, and effective strategies. It is reasonable to expect that the program may
need to be modified throughout the year, as the student and teachers become more familiar, and as changes take place.
- When developing a students personal program plan, it is important to make adaptations in instruction and classroom management to address the needs of the child.

Communication and social skills are key areas of the childs development and must be addressed in the plan. The following information is to assist the team in developing a PPP for a student with autism.

Instructional Approaches and Classroom Management
The following strategies and guidelines were adapted from Gillingham (1995), Grandin (1995), Gray (1993c), Gray & Garand (1993), Indiana Resource Center for Autism (1997), Hogdon (1997), Koegel & Koegel (1995), Olley & Reeve(1997), and Quill (1995a, 1995b).

1. Use visual methods of teaching (adapted from Quill, 1995a & Hogdon, 1995a) Children with autism often demonstrate relative strengths in concrete thinking, rote memory, and understanding of visuospatial relationships, and difficulties in abstract thinking, social cognition, communication, and attention (Quill, 1995a). The use of pictographic and written cues can often aid in helping the student to learn, communicate, and develop self-control. One of the advantages of using visual aids is that they can be examined for as long as needed to process the information. In contrast, oral information is transient. Once it is said, the message is no longer available. This may pose problems for students who have difficulties processing language, and who require additional time (Hogdon, 1995a). In addition, it may be difficult for the student with autism to attend to the relevant information and to block out the background noises. The use of visual supports enables the individual to focus on the message. The type of visual aids and symbols vary in complexity. Objects are the most concrete form. Pictures and photographs are the next level of representation. Graphic symbols are somewhat more complex and consist of pictographs and written language. However, graphic symbols have been widely used, and have been successful with children with autism. There are software packages available which provide quick access and the opportunity to create customized symbols.

For example the Boardmaker@Program(Mayer-johnson 1987-1997) and PICTOCOM SE (Maharaj, 1996). Visual supports can be used in a variety of ways in the classroom. Hogdon(1995)and Quill (1995a, 1995b) provide examples of different types of supports. Visual aids for organization, such as daily schedules, mini-schedules, activity checklists, calendars, choice boards Aids for giving directions, such as classroom rules, file cards with directions for specific tasks and activities, pictographs and written instructions for learning new information.

- Strategies for organizing the environment, such as labeling objects and containers, signs, lists, charts, and messages.
- Aids for social development such as posting rules and routines, and teaching social skills through the use of Social Stories (Gray, 1993a, 1993c). A social story is a description of a social situation which includes the social cues and appropriate responses, and is written for a specific situation for the individual student. For further information, refer to the section .
- Aids to assist in managing challenging behaviors and developing self-control. This may include rules, as well as pictographs, which provide a cue for expectated behavior.
- The key question to ask when planning an activity or giving an instruction is "How can this information be presented in a simple visual format?" The selection of visual aids is guided by an understanding of the child and his/her abilities and responses. Many examples of visual supports are provided in the book Visual Strategies for Improving Communication (Hogdon, 1995). This book is available for purchase from the Saskatchewan Education Learning Resource Distribution Centre and available for loan from the Saskatchewan Education Resource Centre.

2. Provide a structured, predictable classroom environment. This is not to be confused with an authoritariation approach. The environment should be structured in the sense that it provides consistency and clarity, students know where things belong, they know what is expected of them in a specific situation, and can anticipate what comes next.

3. Provide a customized visual daily schedule. Vary tasks to prevent boredom, and alternate activities to reduce anxiety and possibly prevent some inappropriate behaviors. For example, alternate familiar, successful experiences with less preferred activities. It may be helpful to alternate large group activities with opportunities for calming activities in a quiet environment. In addition, the incorporation of physical activity and exercise at points throughout the day is helpful.

4. Know the individual, and maintain a list of strengths and interests.

5. Provide positive praise while learning, and provide information about what the student does right or well.

6. Use meaningful reinforcements. The student with autism may not be motivated by common reinforcers. He/she might prefer some time spent alone, time to talk to a favorite staff member, a trip to the cafeteria, an exercise routine such as going for a walk, time to play with a favourite object, music, playing in water, getting to perform a favourite routine, items that provide specific sensory stimulation, or sitting at the window. It is important to know what is reinforcing for each child.

7. Consider sensory factors in instruction and environment. Some of the factors to note are:

Visual- Are there distracters such as light, movement, reflection, or background patterns? Consider the eye level of the student, and the position of the teacher in relation to the student, and distracters that may interfere with attention. Also consider the time required to shift attention.
Auditory - Are there fans, loud speakers, fire alarms, several people talking at once, air conditioners, bells, dogs barking, or scraping? What is the general sound level, and the predictability and repetitiveness of sounds? Consider the individuals comprehension of verbal information and the time typically required to process auditory information and to shift attention.
Tactile - Are there textures which seem to be aversive? Are temperatures appropriate? Does the student demonstrate a need to explore through touch and yet avoid being touched? What is the level of ability/defensiveness in the use of objects?
Vestibular - Consider the students need to move and exercise. What are the individuals reactions to movement?
Taste - Consider the preferences, dislikes, textures and temperatures of foods.

8. Note tasks and activities which create frustration and examine the environment for items, sounds and activities that may result in sensory overload for the individual. Make available those sensory experiences that may be calming for the student, and adapt tasks and materials to promote successful participation. When feasible, decrease environmental distracters that interfere with learning or confuse, disorient or upset the student.

9. Have a relaxation area. At times, it may be necessary to have a calm, quiet, designated area where the student can go to relax.

10. Plan and present tasks at an appropriate level of difficulty.

11. Use age-appropriate materials.

12. Provide opportunities for choice.

13. Avoid long strings of verbal information. Break down instructions and use visual aids.

14. Pay attention to processing and pacing issues which may be linked to cognitive and/or motor difficulties, and give the student ample time to respond.

15. Use concrete examples and hand-on activities when teaching abstract ideas and conceptual thinking.

16. Introduce unfamiliar tasks in a familiar environment when possible. When this is not possible, prepare the individual for the new environment through the use of visual aids such as pictures, videotapes, and/or social stories.

17. Use organization aids and visual supports to assist the student to attend to pertinent information, and to teach new tasks.

18. Provide opportunities for meaningful contact with peers who have appropriate social behavior. Involve the student in shared learning arrangements. Pair with buddies for walking down the hall, on the playground, and during other unstructured times. Vary peer buddies across time and activities, to prevent dependence on one child. Peers may also be involved in providing individualized instruction. Cross-age peer supports/buddies can be arranged by assigning an older student to assist the student with autism. Pair students while attending special school events such as assemblies and clubs. Facilitate involvement in after-school or extracurricular activities. Assist the student with autism to support his/her classmates or younger children in other classrooms. If your school has an arrangement where a class of older students is paired with a younger class, ensure that the student with autism is also paired, and provide the necessary supports for success. It will be necessary to teach appropriate social behavior, and to provide the student with situation-specific expectations for behavior. Information on the development of social skills is provided in the section.

19. Encourage independent effort and incorporate proactive measures to reduce the likelihood of becoming dependent on prompts. Use visual aids to decrease the reliance on prompts from the teacher/teacher assistant. Be careful that the teacher assistant is not always closely positioned next to the student; positioning the assistant away from the student and changing teacher assistants may help to avoid dependency. Provide visual organizational aids such as schedules, task outlines, check lists, charts, and involve the student in using them. Increase awareness of environmental cues. Teach in natural environments that contain the cues and reinforcement that prompt and maintain the behavior.

20. Plan for transitions and prepare the student for change. This can be done with the aid of visual schedules to inform changes in routine. Social stories can also be used to prepare the student for new situations.

21. Direct and broaden fixations into useful activities.

22. Develop talent areas. If the child demonstrates a particular interest and strength in a specific area (i.e., music, drama, art, graphics, computer), provide opportunities to develop further expertise in the area. This may not only provide enjoyment and success, but may also lead to the development of skills for future employment.
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Strategies for Communication Development

The following strategies and guidelines were adapted from Gray (1993a, 1993b, 1994), Hawkins (1995),Indiana Resource Center for Autism (1997), Koegel, Koegel, Frea & Smith (1995), Lindblad (1996) and Quill (1995b).

Programs to facilitate the development of communication include natural language interventions to teach functional language skills in the social context where they will be used (Koegel, Koegel, Frea & Smith, 1995). The classroom and school environments provide a wealth of opportunities to develop functional communication within social contexts, and to promote generalization. However, opportunity alone will not address the communication needs of the student with autism. The identification of specific skills for instruction and strategies for developing the targeted skills are needed.

The communication goals and objectives for the student with autism are best determined in collaboration with the parents and a speech language pathologist, and are based on the abilities and needs of the student. The speech and language pathologist can assist in assessment of communication skills and provide suggestions and strategies tailored to the unique needs and characteristics of the student.

The following are some general strategies and suggestions to assist with communication:

1. Focus on developing interaction and communication in the environments in which the child actually communicates.

2. For the young child it may be necessary to provide some structured teaching to develop social and communicative play. This can be done through the provision of structured play opportunities which incorporate the childs interests. Modeling, physical prompts, visual cues and reinforcement are used to facilitate attention, imitation, communication and interaction.

3. Talk at a sentence level, using vocabulary that is appropriate to the students comprehension capability. Use language that is clear, simple and concise. For students with more severe communication disability, choose familiar, specific, and concrete words, and repeat as necessary.

4. Teach the student to listen. The use of visual supports may aid in obtaining and maintaining attention.

5. It may be necessary to talk more slowly or to pause between words to allow time for the student to process the information. The pace of speech is dependent on the ability of the individual child.

6. Use visual input to aid comprehension of oral speech.

7. When working with students who are higher functioning, it is easy to assume that the student is understanding information, particularly if they are able to repeat it. However, even though there may be good recall, the understanding may not be there. It is important to avoid long strings of information, to use visual supports to aid comprehension, and to check for understanding.

8. Use social stories to explain events/activities.

9. Teach new vocabulary in a variety of contexts and using a visually-based approach.

10. It is important that those involved with the student have a thorough knowledge of the students form of expression and that they adjust their expectations for communication accordingly.

11. For students with limited expression, accept restricted verbal and nonverbal behavior as communicative.

12. Set up communication opportunities to encourage expression. This can include:

- situations to encourage requests, such as for food, toy or help
- situations to encourage negation such as refusing a food or toy, protesting when asked to do something, or indicating when the student wants to stop
- situations to encourage commenting, such as labeling pictures in books, or objects from a box, greetings or play activities.

13. Some children demonstrate echolalia, the literal repetition of words or phrases. Echolalia can be used as a teaching tool. The echolalic speech can be shaped through the use of rules and using the echolalic skill to model more appropriate language (Rydell & Prizant, 1995). The speech and language pathologist can assist in providing specific suggestions for the individual student.

14. Some children may benefit from the use of an augmentative communication system. An augmentative communication system is any approach that supports, enhances or adds to the way a person tells you something (Geneva Centre). It may be recommended for the nonverbal child, and also for the child who has limited verbal expression, but appears unable to use speech in a functional way to express wants and needs.

The decision to implement an augmentative communication system, and the selection of the type of augmentative system, is made by the parents in consultation with a speech language pathologist (SLP). This may be the school SLP, or referral to another SLP with expertise in the area of autism and augmentative communication systems.

The educators role is often to encourage the student to use their augmentative means of communication to express themselves and to supplement oral speech. There are a variety of augmentative systems including gestures, pictures, symbols, and/or technological devices. One type of augmentative system that is frequently used with individuals with autism is the Picture Exchange System (PECS) (Bondy & Frost, 1994). This system involves the use of symbols or pictographs to communicate. Instruction is provided through naturally occurring situations and begins with symbols that are highly reinforcing for the individual. The student is taught the concept of exchange, and is systematically moved through a sequence of strategies to use symbols to communicate in a variety of settings and situations.

For additional information on PECS refer Bondy, A. & Frost, L. (1994), and Frost, L.A. & Bondy, A.S. (1994).

15. Virtually all individuals with autism have difficulty with pragmatics - the interpretation and use of language in social situations. Even those individuals who have a good vocabulary and appear to have a command of the language may have a restricted understanding of social and conversational interactions. The social use of language is an important area for instruction for students with autism. Carol Gray (1994) has developed a Comic Strip Conversation strategy for teaching conversation skills through the use of simple drawings. These drawings illustrate what people say and do and emphasize what they may be thinking. A set of eight symbols is used to represent basic conversational skills such as listening, interrupting, loud and quiet words, talk and thoughts. Colours may also be incorporated to represent the emotional context. (Grays book Comic Strip Conversations is available for loan from Saskatchewan Education Resource Centre). Social Stories (Gray, 1993a, 1993c, 1994) with scripts can also be used to develop conversation skills and communication appropriate to specific social contexts and situations.

To facilitate social communication, structure interactions around the students activity preferences and routine. Encourage informal and formal communicative social exchanges during the day. Individuals with autism have difficulty understanding subtle social messages and rules, and also have problems interpreting nonverbal communication from others.

It may be helpful to provide the student with the concrete rule when one does exist, and to present this in a visual format, such as writing it down or incorporating the rule into a social story or comic strip conversation.

Students also need opportunities for social interactions and community-based experiences in order to practice the skills.

Guidelines and Strategies for Social Skills Training
The following strategies and recommendations were adapted from Attwood (1998), Dunlap, et al., 1991), Geneva Centre (1994), Gray (1993a, 1993b, 1993c), Hawkins (1995), Indiana Resource Center for Autism (1997), Jenkins, Odom & Speltz (1989); Koegel & Koegel (1995), Koegel & Koegel, Hurely & Frea (1992), and Quill (1995a, 1995b). One of the defining characteristics of autism and pervasive developmental disorders is the impairment in social interactions and social skills. Social skill development is an essential curricular area for students with autism, and is also a crucial component of any intervention plan for changing problem behaviors.

1. When addressing social skill development, it is essential that the student have the opportunity to participate and interact in a variety of natural environments where appropriate models, natural cues and stimuli, and functional reinforcers are available. Placement within integrated environments provides this access to peer models and social opportunities.

2. In general, individuals with autism need explicit teaching to develop social skills and understanding of social situations.

3. One of the most helpful methods for teaching social skills is the use of Social Stories, a strategy developed by Carol Gray (1993a). A social story is a description of a social situation which includes the social cues and appropriate responses, and is written for a specific situation for the individual student.

The story can be used for a variety of purposes, including facilitating the inclusion of students in regular education classes, to introduce changes and new routines, to explain reasons for the behavior of others, to teach situation-specific social skills, and to assist in teaching new academic skills.

The process begins with the identification of student needs through observation and assessment. Once a difficult situation is identified, the author observes the situation and attempts to consider the perspective of the student in terms of what will be seen, heard, and felt. A story is written at an appropriate comprehension level for the student, and includes descriptive, directive, and perspective statements. The descriptive sentences provide information on the setting, activity and people involved. The directive statements are positive statements of the desired response for a given situation, and the perspective statements provide a description of the possible reactions of others.

Gray and Garand (1993) suggest three basic approaches for implementing a social story:

For a student who reads independently, the story is read twice by an adult, followed by the student reading it back. Then the student reads it daily. If the student does not read, the story may be recorded on a cassette tape with a signal (i.e., bell) to turn the pages. The student is taught to "read" the story, and reads it daily. Videotape the social story to incorporate video modeling. The story is read aloud on a videotape, with one page on the screen at a time.

Extensive information on the use of social stories as well as guidelines and examples are provided in the resources authored by Carol Gray in the Resource List.

4. The use of social stories as well as other visual supports are an integral part of a comprehensive social skills program for a student with autism. They can be incorporated in teaching students complex social behaviors and survival skills that are needed in everyday situations. Developing an understanding of the basic rules associated with a given situation will help the child to adapt to the social context, and may prevent increased anxiety and reduce the reliance on inappropriate coping behaviors. Waiting - Visual cues such as an object, pictures and written words can provide concrete information to make waiting less abstract and more specific to the situation.

Taking turns - this can be taught through the use of social stories as well as the use of a picture or pictograph to cue the child. It may also be necessary to provide some instruction and rehearsal in turn-taking activities.

Transitions - the use of social stories and providing warnings with visual cues can aid in making the transition from one activity to another. This can be particularly difficult if the student has not completed the activity, and the student may need to be prepared for the possibility of having to finish later.

Changing the topic in conversation - Some students may perseverate on one topic. Visual rules, established time limits, and setting a time and place to engage in a favorite topic may help in teaching the student when he/she needs to end and/or change the topic.

Finishing - it may help to teach the student to use environmental cues such as observing and following the behavior other children. It may also be necessary to use a timer, and a method for checking their own work.

Initiating - social stories can be particularly useful for teaching a student how to approach others, ask for something, get into a game, say hello, and to leave a situation if upset.

Being flexible - visual systems can be used to explain changes in a concrete way. If sequenced schedules or picture routines are used, a specific picture can be removed or crossed out, and another put in its place.

Being quiet - visual supports may be helpful to teach the specific behaviors for being quiet, and to teach rules for specific situations.

5. Another instructional strategy which presents information in a visual format is the use of Cognitive Picture Rehearsal (Groden & LeVasseur, 1995). This method involves presenting a sequence of behaviors in the form of pictures or pictographs with an accompanying script. The student is guided through repeated practice of the sequence of behaviors.

For additional information, refer to the book Teaching Children with Autism: Strategies to Enhance Communication and Socialization by Kathleen Quill (1995).

6. The student may also need instruction and support to participate in the activities at recess. This can be a very confusing time. Recess is less structured, with typically a lot of activity and noise. The student with autism may experience difficulties in coping with the amount of stimulation, as well as in reading the social cues and understanding expectations for behavior. Gray (1993b) provides a collection of material to socially simplify recess in Taming the Recess Jungle.

7. It may be helpful to educate peers. This can be done informally or in a more structured manner. Young children can be provided with prompts to initiate and maintain interaction with their autistic classmate. They may need help to understand the behavior of the autistic student. For example, the teacher may need to translate nonverbal communication, or explain that a specific activity is difficult for the student, and identify what the peer can do to help.

Children can be trained to use strategies to enhance the social competence of the child with autism. Pivotal Response Training (PRT) is one technique that has been used during recess breaks and has been successful in increasing interactions, initiation, varied toy play, and language use (Pierce & Schreibman, 1997). PRT involves teaching typical peers to use strategies to (a) gain attention, (b) give choices to maintain motivation, (c) vary toys, (d) model social behavior, (e) reinforce attempts, (f) encourage conversation, (g) extend conversation, (h) take turns, and (i) narrate play.

Older students can be provided with information on autism, the characteristics, and tips for interacting with the student with autism. It is important that parents be involved in the decision to discuss autism with their childs peers. They may wish to preview any materials, or may want to be involved in the presentation.

8. Optimally, the end result of developing specific social skills is to enable the student to interact with others in a variety of settings, and to facilitate the development of social opportunities and relationships. Children who demonstrate basic social skills may still have difficulty establishing connections with other children, and in maintaining interactions with peers. Teachers and parents may facilitate further social interaction through:

- Encouraging a friend to play with the child at home
- Enrolling the child in clubs and societies
- Teaching the child to observe other children to follow what to do
- Encouraging cooperative games
- Modeling how to relate to the child, and educating other students in the class
- Encouraging prospective friendships
- Providing enjoyment at break times
- Doing projects and activities which illustrate the qualities of a good friend
- Helping the student to understand emotions through direct teaching of how to read and respond to cues that indicate different emotions.

9. The student may also benefit from social skill instruction within a small group structured format. There are a variety of social skills training programs and resources available, such as the Skillstreaming series (McGinnis, Goldstein, & Arnold, 1990) and The Social Skills Intervention Guide (Elliot & Gresham, 1991).

These programs include an assessment which is used to identify skills for instruction. The lessons follow a similar format in each of the social skills curricula: (1) identifying the skill and skill components, and when it is used; (2) modeling the skill; (3) role play; (4) opportunities to practice; and (5) strategies for generalization.

Although these curricula are not developed specifically for children with autism, they can be used in combination with appropriate adaptations and supports. In addition, there may
need to be a particular emphasis on the strategies for facilitating generalization of targeted skills.

10. Finally, the goal for all students, including those with autism, is to increase independent participation in a variety of environments. One method that has been used to increase independence is teaching self-management procedures (Dunlap, Dunlap, Koegel & Koegel, 1991; Koegel, Koegel, Hurley & Frea, 1992). Self-management involves teaching the student to monitor their own behavior, and to obtain reinforcement for engaging in the behavior. The process for teaching self management is:

- Define the target behavior
- Identify reinforcers
- Choose or design an appropriate self-monitoring method; i.e, wrist counter,stickers)
- Teach the student to use the self-monitoring device
- Facilitate independence by gradually reducing prompts and increasing the time the student spends self-managing their behavior.

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Asperger's Children and Teachers
by Barbe Fowler
December 21, 2000

A recent school meeting with the teachers at my son's present school and the teachers from his future school (he goes to middle school next year) just proved to me that some teachers do not have the ability to understand the
condition of Asperger's Syndrome.

The stumbling block for the teacher seems to be that the child appears to look normal and be very bright in many areas. The vocabulary of many Asperger's children can be amazing and the teacher will often develop the attitude of "if this child is so smart, why can't he understand my point?" Then the teacher embarks on a crusade to "change" the child, make him be like the other children which only causes stress for the child.

We had a situation recently where the teacher had the class out in the school playground, throwing a frisbee at a bottle. This is a very hard thing for my son to do and he is not fond of any activity remotely resembling sports, so when she asked the class "What would make this game better?", he responded, "Well, not playing it at all would make it better." Of course, the class laughed, she got mad and called him "rude", he was surprised that he got in trouble because he was only giving her an answer and then he blew up at her, running off the playground in tears.

Upon discussing it with the teacher, she maintains that he has to learn what is an appropriate social response in this situation, which would be to say what she wants to hear, or say nothing at all. All the other teachers at the meeting seemed to agree with her, which is scary because it means that my son cannot meet their expectations. The teachers have completely missed the fact that children with Asperger's Syndrome cannot be coerced into "saying the right thing" according to her social behaviour code of conduct. This is the very problem that Asperger's children have, they are rather blunt, often sound rude without meaning to, and if you ask them a question, they say what
they think.

When dealing with a teacher who has this kind of stumbling block the best thing you can do is provide her with some information about Asperger's Syndrome and caution her about trying to "change" your child. (Teachers seem to feel that they are correcting some flaw in the child that the parent should have corrected as the child was growing up.)

Another suggestion would be to bring up the story of "The Emperor Has No Clothes". The little boy in the story who speaks the truth about the emperor not wearing any clothing is much like an Asperger's child, unafraid to say what he thinks.

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Social Skills and Asperger's Syndrome
by Barbe Fowler
August 20, 2000

Although there are some very sociable Asperger's children and adults, most of them have great difficulty socializing with other people. This seems to stem from the fact that they don't use non verbal communication in the same way that neuro typical people do. Rather than go through the polite formalities before starting a conversation, they tend to bombard the visitor or friend with a lecture about their latest interest right off the bat.

When my son first started school, he didn't seem to care that other children were making overtures of friendship. Several children would come up to him and say "Hi" and he wouldn't say anything back. When I questioned him on
this issue, he replied, "Well, yes, I hear them saying Hi but I am not interested in them, so why should I say Hi back?" He remained very aloof from the other children.

Over the last 4 years he has progressed with his social skills and can make himself say "Hi" before barraging his listener with a pile of facts. The desire to have friends in Grade 3 made him pay more attention to his own behaviour and we coached him on how to act friendly, be a good friend and what to expect from friendships with other children. Role playing, social stories and helping him figure out what was going on in different situations with his friends helped him develop his friendships.

Peer relationships seems to be the hardest for my son to handle. If he is approached by an adult and engaged in a social conversation, he is quite sociable. As long as he has not been interrupted from the latest special interest, he can be quite witty, take turns speaking and be the life of the party. Adults seem to be less threatening than children due to the fact that they understand his wit, can second guess what his extremely logical statements mean and are more tolerant of strange behaviours. Children tend to view the behaviour of an Asperger's Child as rather odd and eccentric, but they can be coached to be more tolerant and supportive by an understanding parent or teacher, making the social life of an Asperger's child much more rewarding.


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Communicating with Asperger's Children
by Barbe Fowler
October 8, 2000


It has taken me 11 years to really understand my child and even then, because he has Asperger's Syndrome, I am not at all sure that he understands me, or if I understand him the way he means to be understood.

Communicating with Asperger's Children can be very tricky due to their inability to read between the lines and their tendency to take everything you say literally. This difficulty with communication shows up in many ways. For example, I tried to teach my son the golden rule "Treat everyone the way you would like to be treated". He didn't get the logic behind this rule because a) why treat someone you don't like the way you want to be treated, isn't that hypocritical? b) why be polite to strangers when you are not even supposed to speak to them? My son has tried to follow that rule, but when a Teacher speaks to him in an authoritarian tone of voice, he speaks back in exactly the same tone of voice! When she then accuses him of being rude, he says she is too! Of course, you can imagine that this situation escalates to the point of explosive anger on both sides. For my son, it's a very difficult situation. On the one hand, he is following the rule he was taught, but on the other hand, he gets into trouble for it. Small wonder
that he gets confused and frustrated with "neuro typical" people - we are not logical.

When my son was in Grade 1, I walked him to the classroom door every morning because he had great difficulty with the noise, crowded hallways and navigating his way through the school. When other children said "Hi" he never responded, so I got in the habit of prompting him "Can't you see Amy saying hi?". He would look at me as if I had two heads and just say "yes". Finally, he had enough of this prompting and asked me "Mum, why do you talk to me like I am an idiot?" When I explained to him that the other children
would think he was unfriendly if he didn't say "hi" back, he responded "That's okay, I am not interested in them anyway."

When he was younger we used to wonder why we had to explain every little thing in life to him, it was like he was going though his days with blinders on. We now know that he perceives the world around him much differently than we do and he is capable of sophisticated thinking way beyond his years. His type of logical reasoning is amazingly accurate and very hard to argue with.

When you are communicating with your asperger's child, you need to get your brain around a different way of thinking in order to get your point across, or to appreciate where your child is coming from. I am guilty of laughing at some of the things my son says even though he didn't intend to be funny. The other day he demanded to know why I drag him to so many doctor's appointments. When I explained that the main reason I started taking him to so many doctors was because he cried a lot for a child his age and I wanted to make sure that he wasn't suffering from depression, he rolled his eyes at me and in a rather huffy tone of voice announced "Well, I cry a lot because people have the knack of upsetting me!"

After I stopped laughing, I had a sobering thought. This wonderful child of mine, whom I love dearly, has such an amazing way of viewing our world. It's rather fascinating to get inside his head and share the view. There is an
article called "Educating Carl" ( shown below) which illustrates my point quite well. In order to reach children with Autism or Asperger's Syndrome, we need to be able to break out of our way of thinking. It is the adventure of a lifetime that many people never experience.

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Educating Carl
By Carl Daisy


As parents of a child with autism, my wife and I early on came to the realization that there is nothing new that we can think, do or say that hasn't been thought, done or said before. We are the benefactors of all the generations of parents/advocates which have preceded us.

Good or bad,we can no more deny our debt to those who have gone ahead of us than we can deny our heritage. We rail against the unfairness of autism, against the lack of knowledge about its pathology, about the social barriers we must defeat--just as generations before us did.

Which brings me to my point.

Perhaps you have read articles about a subject referred to as "nervous breakthroughs". As it relates to autism, it refers to a specific instant in time when, because of some environmental pressure (usually parental frustration) a remarkable "breakthrough" occurs as a reaction to the negative stimulus. Children who have never so much as uttered a word, miraculously speak...kids who have any one of a number of aversions, suddenly overcome their terror and perform.

My son tends to talk to "no one" at times, or, maybe he talks to everyone. I'm still learning. Nevertheless, in my infinite parental widsom (small w) I made a habit of interrupting him with the question, "Carl, who are you talking to?" Talk to *people*!

Shortly after one of these episodes, while we were still seated at the supper table, the phone rang. It was Grandma and Grandpa. Of course, we encouraged Carl to say something to his grandparents.

The first few sentences were what you would typically expect of any kid talking to his grandparents..."Hello, I'm Carl...we have to go to Grandma's lake to fish. (Although Grandma doesn't actually *own* a lake, to Carl, going there with them was just as good). The rest of the conversation took off from there to include neighborhood kid's names, Disney cartoon characters and his all-time favorite, "Honey, I shrunk the kids".

All of this conversation was unfettered (at Carl's insistence) by any mutual conversation from the other end, namely Grandma and Grandpa.

It was as if there really wasn't *anyone* on the phone at the other end.

It was at this point that the "nervous breakthrough" occurred.

No, not Carl's...mine.

I had been so insistent that Carl "talk to people", that it never occurred to me that Carl had no idea that there were *people* at the other end of that telephone. This was simply an opportunity to "suspend" daddy's rules and jabber to this strangely shaped white object with a long, curly cord attached to it.

I believe that I said something earlier about there being nothing new to think that hasn't already been thought. Well, that may hold true for my wife and I, but not for Carl.

The most insignificant, trivial matter that we take for granted, (where Mario goes when he falls off the Nintendo screen on the T.V.) is cause for all sorts of wondrous investigation for Carl. Unfortunately investigating wondrous noises like the sump pump has also piqued his curiosity.

But therein lies the source of my "breakthrough".

Carl, unlike his father or mother, is capable of *completely original* thinking. It is I who must come into his world, appreciate it and him, if I am ever to share mine with him. Trust and mutual respect are the cornerstones of this adventure. I call it an adventure, because I have truly come to both love and understand my son, and let him take me on his journey at least as much as I ask him to accompany me on mine.

The child truly is father to the man.

Here are some articles on Executive Dysfunction that you may find helpful:

Executive Dysfunction

The term executive functioning refers to mental processes involved in goal-directed activity. The work on this has been primarily done in Neuropsychology but the implications for educators are important. Executive functioning has been rather under-discussed in the school context as yet (stay tuned for my dissertation J) where these issues have been attributed to failures in discipline rather than brain function. Executive functions most directly related to academic performance include:

- setting a goal, (understanding what the assignment or question is asking one to achieve)
- planning a course to achieve it,(remembering the procedure appropriate to the task)
- holding the plan in working memory while executing it,
sequencing the steps in the plan,
- initiating taking those steps and shifting between them,
monitoring progress for both pace and quality,regulating attention and emotional responses to challenges that arise,
- making flexible changes in the plan as needed, and
evaluating the outcome for use of the plan in a subsequent similar activity.

For most of us these processes occur without much explicit thought on our part, and we get better at executive functioning as we mature. For some of us, though, these functions are disordered.Almost all people who have frontal lobe anomalies, like Attention Deficit Hyperactivity Disorder, have difficulty with executive functioning. The medication they take (stimulant) helps with focus and impulsivity control but it only helps, it does not solve the problem entirely. What comes to most of us fairly unconsciously must be explicitly taught to folks with Executive Dysfunction. A combination of cognitive training and appropriate accommodation can make an important difference to those who suffer from these anomalies.

But there is another element of the problem. People who have Executive Dysfunction tend to develop pretty negative beliefs about their ability in the areas where their problems are most visible. Despite more than adequate intelligence they just cant seem to do well in those activities. Since diagnosis of the problem has only been available in the last 7-10 years as advanced technologies allowed new observations of brain function, many kids (to say nothing of parents and teachers) do not get the understanding of whats going on for them until they have already developed defeatist beliefs and feelings about their potential in the areas where their dysfunction shows up the most. For some this is in language-based activities, and others find it in visual/spatial reasoning and math, although it does impact functioning across most of the areas of their lives in one way or another areas as well.

So, all that said, how does this play out in terms of school and work for the individual? First, s/he goes in with the feeling that s/he cant do it. With that ideation and anxiety, s/he attempts the work in front of her/him and effort is inconsistent. You have to believe in the possibility of success to pursue it with even and sustained effort. S/he reads the assignment or the question and either gets what it is saying/asking or not. If not s/he either gives up or applies a fairly random set of fragmented understanding of the appropriate procedures to the problem. For example as s/he is reading an article assigned for tomorrow's discussion s/he gives up several times only willing to give it another shot with encouragement and partnership. Hitting an obstacle like missing pages, or something that doesn't make sense s/he loses the thread of the story and gives up entirely. When it comes to written assignments s/he is focused on getting the answer right, rather than on the processes needed to do that. Often the process seems like magic to someone with Executive Dysfunction. S/he may know the answer to the math problem but have no idea how s/he came to know it. S/he often get the critique that s/he need to "show your work!" But S/he doesn't, because s/he has not been clearly aware of how s/he did it.

Even if s/he has learned the formulae for the genre and has done assignments like the one s/he is currently attempting, s/he has trouble holding them in working memory while she enacts the pieces of the process this time. S/he may apply the elements of the procedure out of sequence, or skip steps without awareness of having done so. S/he has the sense that something is going wrong but is not clear on what, and s/he has trouble monitoring her progress. Folks tend to cope with this uncertainty and anxiety by going faster and adopting a blasé devil-take-the-details demeanor, using a sense of humor in the circumvention of the trouble. S/he is truly shocked when the paper comes back with a grade that s/he knows is not the sort people as bright as s/he is should be getting. All the adults around urge her/him to make a better effort and apply incentives and consequences to help him/her achieve.

Provide the tools and strategies that work around areas of executive dysfunction, and provide support for him/her to use them (thats where teachers, therapists, and the family come in); praise efforts even if the outcome is not optimal, inviting her/him to tweak the strategy or tool use in a way that looks promising; the more s/he owns the methods and tools and fits their use to her/himself the more likely they are to become an automatized part of his/her day-to-day practice.

Maintain firm, honest, and encouragingly constructive critique of her/his efforts. Sugar-coated critique tells a kid that s/he is handicapped and a lost cause. Harsh, or overly meticulous criticism has much the same effect. S/he has issues to work on just like the rest of us, and like the rest of us, s/he will do better with the clear demonstration that she is respected and believed in.

The accommodations, tools and strategies we work out are for a person with Executive Dysfunction analogous to wearing glasses for a person with an astigmatism. The difference is that over time the person with Executive Dysfunction's making of these plans and using them will improve her/his executive functioning in problem solving, whereas the astigmatism is not much changed by the wearing of glasses.

People with Executive Function Disorders

- Have difficulty with goal setting, often not grasping the point of setting them
- Have the sense that things either happen or dont, little awareness of process
- Have difficulty getting started on tasks, and shifting between them
- Tend to live in the current moment I know that now, but when I get to school it feels different
- Are unable to effectively reflect on past experience to plan for the future, thus common discipline measures, like incentives and consequences, produce little change in behavior
- May continue to use the same strategy to solve a life problem, even when it has already proven ineffective
- May vacillate from impulsivity to rigidity, often with rising anxiety over things not turning out right
- Have difficulty adapting to change
- Rarely matches a strategy to a problem before trying to solve it
- Have low self-esteem and tend to be both unrealistic about their abilities, and very sensitive to critique
- Have difficulty overriding an emotion in order to behave appropriately or positively in a situation
- Have very low tolerance for failure or frustration. Will quit rather than try another approach, even when one is suggested.
- Tend to believe that accepting suggestions or help indicates weakness.
- Tend to locate the source of their troubles outside their control.
- Will skip steps in a procedure and be baffled about the reason an expected outcome was not reached.
- Have difficulty putting a sequence of steps in order, or even realizing that there are sub-goals to be accomplished on the way to the finish.
- Believe they either know something or dont, have little faith in effort.
- Have difficulty shifting perspectives
- Need prompting to consider the feelings or views of others
- Fail to see the big picture, or the connections between details Just when I get good at what my teachers ask me to do, they give me something new that I am no good at doing!
- See only the big picture, missing the trees for the forest.

These issues interfere with the persons success in life across all their areas of activity, but are most noticeable in traditional school, and work settings. The good news is that through cognitive training and designing both tools and strategies to suit the individual, most of the impact of these issues can be reduced or resolved.


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Living With Executive Dysfunction

Executive dysfunction involves problems with planning and executing tasks. Sometimes the "simplest" tasks, such as grooming, are very difficult for autistics due to executive dysfunction. Since each person with executive function problems will exhibit different strengths and weaknesses, the methods for dealing with these problems vary quite a bit. The methods presented below work well for myself - they enable me to live independently in much the same way as a neurotypical. Without these methods, I would be unable to do this. I do believe they can be helpful to many other autistics, although any method chosen needs to be accepted fully by the autistic for it to provide help - and no single strategy will work with all autistics. In fact, some strategies, including some of mine, won't work with most autistics.

General Strategies

Eliminate Clutter

Go through your stuff. Show no mercy. Dispose of anything you don't need. For instance, is there something in your closet you haven't worn in a while? Get rid of it. Do you have boxes from your last move still unpacked, months later? Throw them away (don't even open them - it'll make you want to keep the stuff in them!). The less stuff you have, the easier it will be to keep it all organized! Don't hang onto things just because they might "someday" be useful. Yes, you may end up spending some money later, but you probably wouldn't have been able to find it anyhow (and, thus, spent the money still!).

Simplify

Do you really need to do it? You should ask yourself this question before you even consider strategies to overcome difficulty performing a task. Some tasks can simply stay undone. For your actual strategies, keep them as simple as possible. Don't try to do everything perfectly - try to do what is needed.

Use Routines

Train yourself to follow a routine, with few deviations. The closer you follow a standard routine, the more likely you are to remember it (this is true for both autistic and non-autistic individuals). The more frequently you use a routine, the more likely it is to become a habit.

Small Jobs

Don't attempt big jobs. Only do small jobs. Instead of "cleaning your house", "clean the corner of the living room." Cleaning the corner of the living room is part of cleaning your house. But, by breaking the task into small pieces and only doing one small piece at a time, you will be attempting jobs which can be achieved in a very short amount of time and in one setting. This will also reduce the possibility of getting interrupted in a task, which can be very bothersome to some of us. This technique is used by professional project managers in the corporate world - it is recognized that major tasks can not be scheduled or performed satisfactory, but small jobs can.

Be Realistic

You won't be able to do things the same way an NT will. You may have to be content with doing less and taking more time to do it. That's okay, though. Figure out what you want to do, and then think hard about it. Ask yourself, "Will I be able to do this with just a little prompting or help?" If not, then solving the executive function difficulties probably won't solve the problem without you first solving the other underlying problems. In addition, your strategies will not motivate you to do a task you don't want to do. These strategies will only help you perform tasks that you want to do.

Be Pragmatic

Get rid of strategies that don't work. If, after a week you aren't able to establish the strategy, it probably won't ever actually work. If, after a month, you are still doing the strategy, you will probably be able to keep doing it, as a month is usually long enough to get over the initial enthusiasm that often makes doing a new strategy much easier initially. No matter how wonderful a strategy is, if you can't or won't follow it, it is no good for you.

Get Help

Some people find that having others call and remind helps get a task done. However, others claim that such reminders only reinforce inertia, so this may be very individual specific.

An externally imposed scedule, such as the kind of schedule a student in formal education must follow, can help start all other routines, and improve overall functioning.

Set Aside a Workspace

A specific area to do a specific task might be helpful.

Checklists

Use them for many routine tasks, such as doing certain tasks, getting dressed and getting ready for bed. I also use them to remind myself of certain tasks.

Personal Digital Assistant (PDA)

A Palm Pilot can be used to help organize time. The most useful features of the Palm are the to-do lists and calendar. Some Palms have a "silent alarm" feature. Reminders can be set to alarm by vibrating instead of beeping, which allows you to get your reminders discreetly and without disturbing others at work, in a class or event.

A possible alternative is to use the Casio Databank 150 watch. This watch can have 100 alarms, each of which can be set up to a year in advance. This is probably a very good alternative to the Palm, especially for people who don't want to carry a full-sized PDA.

Specific Strategies

Checklists can be made for:

Taking medication
Watering plants
Feed pets
Remembering to Take Things to Work (include all things needed)
Taking Out Trash
Washing Dishes
Remembering to Eat
Choosing Clothes
Paying Bills On-Time (http://www.PayMyBills.com can help here. It costs a few dollars per month and you can schedule payments such as rent to automatically be paid.)

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Lazy Kid or Excecutive Dysfunction?
Tracy Landon, Ed.D.
Linda Oggel, M.A., CCC-SLP
Innovations & Perspectives
March 2002, Volume 5, Number 2, pp.1-2
Reprinted with permission

Do you have a student who seems incredibly lazy? Intentionally forgetful? Absolutely unmotivated? Deliberately late? Do you feel like a broken record? Constantly asking where his homework is? Constantly asking him to clean out his desk? Constantly asking her to pick up stuff around her desk? Do you have a student who is chronically distracted? Are you repeating directions to get the student back on task when he gets distracted? Do you have a student who knows the information but cant seem to communicate it to you in a logical sequence? Do you ask a question and get an answer thats related but not quite connected to the question? If so, it might be that the student is not using these behaviors intentionally.

One of the least studied and most frequently overlooked contributors to academic and behavioral problems is a problem in the frontal lobes of the brain known as executive dysfunction. Students with executive dysfunction have problems of a neurobiological nature that particularly affect planning, flexibility, organization, and self-monitoring. These students may have difficulty picking a topic, planning the project, sequencing the materials for a paper, breaking the project down into manageable units with intermediate deadlines, getting started, and completing the activity. And because these students frequently underestimate how long something will take, theyll generally leave the project until the night before it is due. Just imagine how difficult it would be if you had trouble organizing your time, materials, belongings, thoughts or any combination of these!

If you believe your student has executive dysfunction (also called executive function deficitscalled executive because the tasks are often the responsibilities of a company executive), consider helping the student to organize himself. Begin by developing a relationship with the student that is emotionally supportive. Emphasize that you want the student to succeed. Help the student to understand his problems and that there are strategies he can use to organize him/ herself. For example, you could say, Kids with executive function problems have difficulty in certain areas. There are many ways you can help yourself. Lets talk about the areas and supports. Then you can choose which ways to help yourself. Then describe the following potentially troublesome areas and potential supports that are identified in the shaded area.

Managing Time

Use time management techniques such as the use of checklists, prioritized To Do lists, and prioritizing assignments.

Estimate how long a task will take and then check on the accuracy of your estimate.

Plan for more time to do a project that you think you will need.

Break long assignments into chunks with time frames for completing each chunk.

Establish intermediate deadlines for big projects with your teacher and show her the project at these deadlines.
Use a word processor and time management software such as the Franklin Day Planner, Palm Pilot, Lotus Organizer.
Write the due date on the top of each assignment in a brightly colored marker.

Managing Space

Ask the student to identify ways he would like to organize himself.

Have separate work areas with complete sets of supplies for different activities.

Schedule a weekly time to clean out your desk and book bag (in school).

Managing Materials

Leave a large supply of pencils/pens in the class-room with the teacher.

(For younger students) Have one notebook in which all assignments are recorded. Ask your teacher to check the assignments at the end of each day to insure that the assignments are recorded properly and that the necessary materials to com-plete the assignments are packed in your book bag. Also ask her to make sure the due date for each assignment is written at the top of each page.

(For older students) Use a three-ring binder with organized sections enclosed by a zipper. Head-ings could include Assignments Due/Date, To Do Tonight, Ongoing Work. Use dividers in the notebook that are color-coded (e.g., Red for assignments that must be done right away, yellow for those due at the end of the week, etc.).

Color code materials. Cover the textbook for one course in the same color as the notebook for that course. Use the same color coding to prioritize assignments.

Establish a daily routine for school organization and include a written version of it in the notebook (e.g., turn in homework at the beginning of classes, get out your paper,text,pen and check blackboard for assignment, prepare to leave class three minutes before it endspack books, papers, etc., turn in assignment book for checking and initialing at the end of each day, etc.). Use this same approach at home (e.g., do homework at a certain time, have parent initial homework, clean out book bag, check for necessary supplies for school).

Obtain two copies of each textbook. Mark one To be left in school and the other To be left at home.

Managing Work

Use a checklist to guide you through an independent assignment. Include items such as: get out pencil and paper, put name on paper, put due date on paper, read directions, ask teacher to further explain if needed, do work, put work away in note-book in appropriate section (e.g., to do tonight, to do this week), write assignment on assignment sheet, get teacher to sign, take home and complete work.

Finally, have the student identify which strategies she would like to try using and get started. Consider meeting with the student after a week to evaluate her use of the strategies. Be sure to praise the students progress rather than focusing on areas of continued disorganization. In addition, suggest that students family be included so that they can help him or her continue the strategies at home.
As the educator you can support the student (and others) by making some changes in the classroom. Some suggestions you can implement include:

Maintaining a highly structured classroom.

Using a written (visual) schedule to keep the student
focused and on task so that he or she can complete tasks as independently as possible.

Giving written directions whenever possible (dry erase boards, index cards, etc.) rather than auditory prompting.

Giving fewer problems/questions on worksheets and/or creating boxes next to each question so the student can check it off as it is answered.

Making the classroom as distraction free as possible (away from windows, doors or favorite activity areas).

Keeping assignment folders in specific and consistent places.

Using a visual calendar for both school and home to help the student anticipate events.

Using a visual timer to help the student understand time constraints.

Also, if you suspect a student has executive dysfunction, consult with your school psychologist. While executive function deficits are most commonly associated with Autism Spectrum Disorder, they also are known to occur in students with ADHD, Fragile X Syndrome, conduct disorder, obsessive-compulsive disorder, traumatic brain injury, and schizophrenia. Although there are currently no agreed-upon protocols that constitute a battery of tests for executive dysfunction, several tests have been used in research that seem to tap into aspects of the disorder. These include the Matching Familiar Figures Test (Waterhouse & Fein, 1982), Wisconsin Card Sorting Test, and various computerized tests.

Teach your student with executive dysfunction to organize himself. In addition, provide support by making some adaptations in your classroom and in your interaction style. Remember that students with executive dysfunction are not unmotivated or willfully engaging in problematic behavior. They really cannot organize and flexibly solve problems themselves without appropriate supports.






DDR is a nonprofit organization dedicated to meeting the needs of those working with children who have developmental delays in sensory motor, language, social, and emotional areas.

Who are we to dictate what's acceptable from someone else? -- Inappropriate Behavior

Weak, under-developed social skills can be the most devastating of all the characteristics of a child or adolescent with learning disabilities. Fortunately, here's some wonderful advice from experts in the field as well as articles to enhance the understanding of this critically important issue for parents and educators.

Social Skills - The Gray Center