The Autistic Spectrum |
Miscellaneous articles and information
for anyone in the life of a person with Autism.
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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 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).
7. Scott, F. J., Baron-Cohen, S.,
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).
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.
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:
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 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 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 ******************************************** 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. * * * * * * * * * * * * *
* * * * * * * * * * * * * * * * * *
* * *
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. * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * 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) * * * * * * * * * * * * * * * * * * * * * * * * * * * * * "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:
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."
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.
* * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * 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.
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 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. 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: 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 *******************************************
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. * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * 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. * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * Bright beginnings can mask a learning disability By
Laura Pappano, 3/17/2002 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.'' * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * Children with sensory integration
dysfunction need help making sense of the world
* * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * Brain
Undergoes Gains and Losses in Cognitive Abilities During Adolescence
* * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * 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 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 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 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 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. 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 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 Physical awkwardness
makes some kids stand out even more. 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 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 "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 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 "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, "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 "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 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 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 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 * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * 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 * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * How to Determine If a Treatment Really Helped Written by Stephen M. Edelson, Ph.D. 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: 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.] * * * * * * * * * * * * * * * * * * * * * * * * * * * * 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". * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * 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!" ************************************************************ 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. * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * 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 * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * *
*
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. * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * 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. ************************************************************ 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? * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * 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. * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * Wonderful item written by a Mom struggling to get across to her child's teacher just what he goes through every day.
Social Behavior in Autism Understanding the Student With Asperger's Syndrome: Guidelines for Teachers
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:
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Who are we to dictate what's acceptable from someone else? -- Inappropriate Behavior |