DIAGNOSIS: Autism WHAT FAMILIES CAN DO

Patricia S. Lemer

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

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

"YOUR CHILD IS AUTISTIC"

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

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

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

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

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

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

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

WHAT CAN A FAMILY DO?

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

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

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

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

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

Feed your child a diet that is:

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

MOVING TOWARD HOPE

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

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

Box 1

AUTISM SPECTRUM OF DISORDERS

ADD     
                  ADHD      Dyslexia    
                  Asperger's    Hyperlexia     
                  PDD     Autism

Less Severe                    
                  More Severe                    
                  Most Severe

Box 2

Risk Factors for Autism Spectrum Disorders

1. Traumatic birth

2. Allergies in the family

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

4. Red ears or apple cheeks

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

6. Recurrent ear, sinus, or strep infections

7. Chronic, unexplained fevers

8. Respiratory problems, including asthma and bronchitis

9. Skin problems, including eczema and poor color

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

11. History of an extended immunization reaction

12. Sudden decline in function between 15 and 30 months

13. Yeast infections, such as thrush

14. Hyperactivity

15. Agitated sleep

16. Wild swings in mood and function

17. Self-injurious or violent behaviors

18. Regressive behavior after eating food with additives

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

20. Craving for apple juice

Box 3

Son-Rise

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

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

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

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

-- Rozella Kennedy

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

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An Aspie's Advice to Parents of Aspie Kids

By Frank Klein

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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The World I Want To Live In by Amanda Baggs, Autistic

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

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

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

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

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

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

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

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

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

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

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

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

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 A Life Out Of Sync: Asperger Syndrome

       [By Seattle Times staff and news services.]

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

       Ashton Smith was a Mountlake Terrace teen who

       suffered from Asperger syndrome. The condition may

       have been a factor in his death earlier this month.

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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