This link is quite interesting. It has several case studies and suggests that HFA might sometimes appear to onset in early to late adulthood.

http://www.faaas.org/ritvo.html


Me :D

Here is more on autism in adults. I will post more info as I find it.
I hope nobody minds me using this forum as my personal index of citations.. :p
It just seems to me that there is so little information about autism in adults, and most of us here are adults and desperately need this info so we can get a better understanding of ourselves and others.

Me :D

A collection of interesting links on autism

http://www.autistics.cc/

A study of hyperlexia in a group of children.
http://www.hyperlexia.org/gordy001.html

AS and adults
http://www.betterhealth.vic.gov.au/bhcv2/bhcarticles.nsf/pages/Asperger_syndrome_and_adults?open

A description of autistic adults and adolescents
http://www.autistics.us/library/autadult.html

Autism symptom checklist
http://www.autism-pdd.net/checklist.html#299.00

"The Geek Syndrome" A must read!
http://www.wired.com/wired/archive/9.12/aspergers_pr.html

Autism FAQ (worth reading)
http://www.autism.org/temple/faq.html

Transitioning from School to Work
http://www.autism.org/temple/transition.html

Adults with Aspergers
http://www.autism-society.org/site/PageServer?pagename=aspergers_adult

This is a nice, encouraging article for those who are high functioning.
http://home.att.net/~ascaris1/recovery.html

ASD defined
http://www.phad-fife.org.uk/index2.php?filename=asd.html

An interesting article about autism and "labeling"
http://aspiesforfreedom.org/wiki/index.php?title=Functioning_labels

UInderstanding Adult Autism
http://www.geocities.com/growingjoel/

Patty's perspective on adult autism (a great page)
http://www.autistics.cc/

Adulta with Asperger's
http://autism.about.com/cs/adultswithasd/a/adults_w_asperg.htm

Food issues with adult autistics
http://www.autistics.cc/Autreat/AutreatFoodForWeb.html

ASDMyths and Facts
http://www.newhorizons.org/spneeds/autism/doyle_myths.htm

Lots of great information, speedo.

The lack of ASD information with respect to adults is probably due to the fact that diagnosing adults with ASD can be very as the diagnosis must be made in terms of childhood behavior. Thus, researchers aren't giving as much attention to ASD at the adult level.

FAAAS (Families of Adults Afflicted with Asperger's Syndrome) is an interesting site in general:
http://www.faaas.org/map.php?7,0,301492,faa301492,,,Index,sitemap.html

Thanks for posting the link!

I am trying to gather useful things in this forum. Hopefully others will find the information useful too.

I have completed my initial research... I am trying to get an understanding of what I am facing.

From what I am reading thus far, It looks like autistic individuals who are very high functioning as children are easily overlooked as simply "very smart", "rahter odd", or are misdiagnosed with other maladies ranging from ADHD, to schizophrenia. These same people are more likely to be overlooked until later in life.

I have found only a few accounts of persons who were diagnosed in the autism spectrum in late adolesence or adulthood. In all of those cases these were people who simply appeared to be "odd" or eccentric" on casual examination and either sought out medical intervention on their own (as I did) or were referred by family members. Almost all of them had family members who were obviously autistic.

If autism is a spectrum disorder, then one would expect the vast majority of autistics to be "high functioning", and only a few to be profoundly autistic.

There is an apparent contradiction in the available data. The numbers I am reading suggest that about 1% of the general population is in the autism spectrum. Of these, about 75% appear to have problems with low IQ and mental retardation. The remaining 25% are normal to high IQ and are presumably high functioning. This suggests to me that the vast majority of autistics live their lives essentially unnoticed by the medical community, and are apparently living a reasonably "normal" life without dire need for medical intervention.

The medical profession is rightly concerned with identifying and treating impairment in autism, so those autistics who are functioning in the world with no major issues or concerns are simply not in focus for the medical profession, and are thus overlooked by default.

Another factor is that some people who were once considered as being simply "smart", "rather odd", or "eccentric", or "geeky" are now being diagnosed as in the autism spectrum.

This leads me to several conclusions;

1) There is real hope for many more autistics to live a better life.
2) The medical community needs to take a closer look, and possibly rethink many of the present notions about autism.
3) The present estimates for the number of high-functioning autistics in the United States are far too low.

For myself, the bottom line here is; I resemble this. I was living normally enough until I exacerbated my sensory issues with damaged hearing. It turns out that I was never living as normally as I had thought I was, but it is not such a concern to me. If one is happy, then life is good.

But, here I am at the age of 51 and I am considering the real probability that I am, in fact, autistic and very highly functioning.

Until very recently, I had considered the idea that I was autistic as a possible factor in my problems, but kept ruling it out as far-fetched and so unlikely as to be impossible. In the last two weeks I have become convinced that it is not only possible , but very likely that I am autistic. The fact that I have eluded detection for so long amazes me.

Me :D

From what I am reading thus far, It looks like autistic individuals who are very high functioning as children are easily overlooked as simply "very smart", "rahter odd", or are misdiagnosed with other maladies ranging from ADHD, to schizophrenia. These same people are more likely to be overlooked until later in life.


It is interresting that you mention schizophrenia. Childhood-onset schizophrenia is extremely rare (1 in 40,000 according to http://www.nimh.nih.gov/publicat/schizkids.cfm).


I have found only a few accounts of persons who were diagnosed in the autism spectrum in late adolesence or adulthood. In all of those cases these were people who simply appeared to be "odd" or eccentric" on casual examination and either sought out medical intervention on their own (as I did) or were referred by family members. Almost all of them had family members who were obviously autistic.


Right. Those who are diagnosed in adulthood are probably on the clinical/sub-clinical fault line. As you have (or will have) said, the medical profession is only interrested in clinically significant cases, and thus are only concerned with those that are obviously autistic to begin with.


There is an apparent contradiction in the available data. The numbers I am reading suggest that about 1% of the general population is in the autism spectrum. Of these, about 75% appear to have problems with low IQ and mental retardation. The remaining 25% are normal to high IQ and are presumably high functioning. This suggests to me that the vast majority of autistics live their lives essentially unnoticed by the medical community, and are apparently living a reasonably "normal" life without dire need for medical intervention.


The estimated rate of prevalence of Autism changes like the price of gasoline. I don't think we have 1 in 133 low functioning Autistics. Most of the studies I've heard estimate that between 1 and 6 of 1000 are Autistic (I would assume Kanner's Syndrome, low functioning). I've heard 1 in 500 for Asperger's Syndrome. As far as HFA, I don't know. I don't know if these statistics reflect only clinical cases. Look at the estimated statistics for ADHD. Some say up to 10%. That is a lot of people. Based on that number, it would seem that everyone and their dogs had ADHD.


Another factor is that some people who were once considered as being simply "smart", "rather odd", or "eccentric", or "geeky" are now being diagnosed as in the autism spectrum.


One thing that I've found interesting is that some people think that all "geeks" are mildly autistic. In my experience, I find that that is far from true. I have a few (very little) geeky people that seemed autistic, but most are definately not. In my opinion, autism has a higher correlation with college professors (especially in history, math, and computer science) than so called "geeks".


Until very recently, I had considered the idea that I was autistic as a possible factor in my problems, but kept ruling it out as far-fetched and so unlikely as to be impossible. In the last two weeks I have become convinced that it is not only possible , but very likely that I am autistic. The fact that I have eluded detection for so long amazes me.


Undetected? Sure. Ignored? Quite probable. Some of us are quite asynchronous. We have skills and talents that make up for our deficits, and to the NT mind, someone who is disordered must be disordered all across the board.

It is interresting that you mention schizophrenia. Childhood-onset schizophrenia is extremely rare (1 in 40,000 according to http://www.nimh.nih.gov/publicat/schizkids.cfm).

I can't see how practitioners could mistake autism for schizophrenia.


Right. Those who are diagnosed in adulthood are probably on the clinical/sub-clinical fault line. As you have (or will have) said, the medical profession is only interrested in clinically significant cases, and thus are only concerned with those that are obviously autistic to begin with.

Yes, I think this is as it should be, but it might be interesting to know what the outcomes are for those persons who are not "noticed" as autistic. For all but the most high functioning , I suspect it is not good without medical intervention.


The estimated rate of prevalence of Autism changes like the price of gasoline. I don't think we have 1 in 133 low functioning Autistics. Most of the studies I've heard estimate that between 1 and 6 of 1000 are Autistic (I would assume Kanner's Syndrome, low functioning). I've heard 1 in 500 for Asperger's Syndrome. As far as HFA, I don't know. I don't know if these statistics reflect only clinical cases. Look at the estimated statistics for ADHD. Some say up to 10%. That is a lot of people. Based on that number, it would seem that everyone and their dogs had ADHD.

If one assumes a gaussian distribution for the population in the autism spectrum, at 0.6% as the outlier with pronounced autism, and NT's clustered near the mean, It is very clear that those who are HFA must outnumber severely autistic types by several percentage points at the very least even if you add aspergers' into the numbers.
It seems very likely that at least several percent of the general population are likely to be HFA, but presently unaccounted for. I am not motivated to do the math on this but it ought to be easily calculated by making a few reasonable assumptions.


One thing that I've found interesting is that some people think that all "geeks" are mildly autistic. In my experience, I find that that is far from true. I have a few (very little) geeky people that seemed autistic, but most are definately not. In my opinion, autism has a higher correlation with college professors (especially in history, math, and computer science) than so called "geeks".

I have no problem with that, actually.
I guess the term "geek syndrome" is pase' ?


Undetected? Sure. Ignored? Quite probable. Some of us are quite asynchronous. We have skills and talents that make up for our deficits, and to the NT mind, someone who is disordered must be disordered all across the board.

In my case, Ignored is probably a better word. The indications were there but nobody responded to them. I had no clue about what was going on with myself. I grew up seeing it as normal. All my life I recognized myself as just "different" and I was okay with that. I passed off the stress generated by my sensory issues as insecurity, and my communications problems as due to my just seeing things differently than everyone else. I adapted and life more-or less worked for me.

I think that if I were to have been born in the last decade or so, I probably would have been detected as HFA due to my abnormally accelerated verbal development very early on and my tendency to "check out" now and then (and some other things). I think today's practitioners would have considered those traits as possible indicators and followed up.


Me :D

Speedo

Thats all great information and I think it's very helpful to adult aspies/autistics

I hope it is useful to people.

I am still collecting relevant information. I will add more as I find the time. I think I need to find more info on coping strategies and mitigation of bad symptoms in autism. You might want to look at the thread on brain pathology. There is a lot of stuff about the causes of autism that I did not know existed until recently. It really looks like researchers are close to understanding the biological origins of autism. After reading all of that, my guess is that they are going to discover two or more types of autism.

Me :D

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<!-- #BeginEditable "text" --> Autism Spectrum Disorder (ASD): Myths and Facts

This information is offered for informational purposes only. It is not meant to be a diagnosis, nor is it intended to be medical advice.

by Barbara T. Doyle (http://www.newhorizons.org/spneeds/autism/doyle_myths.htm#a)



Myth: Children and adults with autism spectrum disorders do not care about others.
Fact: Children and adults with an ASD often care deeply but lack the ability to spontaneously develop empathic and socially connected typical behavior.

Myth: Children and adults with autism spectrum disorders prefer to self-isolate.
Fact: Children and adults with an ASD often want to socially interact but lack the ability to spontaneously develop effective social interaction skills.

Myth: Children and adults with an ASD cannot learn social skills.
Fact: Children and adults with autism spectrum disorders can learn social skills if they receive individualized, specialized instruction and training. Social skills may not develop simply as the result of daily life experiences.

Myth: Autism spectrum disorders are caused by poor parenting or parental behavior.
Fact: Parents do not and cannot cause autism spectrum disorders. Although the multiple causes of all autism spectrum disorders are not known, it IS known that parental behavior before, during and after pregnancy does not cause autism spectrum disorders to develop.

Myth: Autism spectrum disorders are not increasing in incidence. They are just being better diagnosed, and diagnosed earlier so the numbers are increasing.
Fact: Autism spectrum disorders are increasing across the globe at an alarming rate. Some states are considered to be in an autism epidemic. Many states experienced a 500-1000% increase in the past few years. No one knows the cause or causes for the increase. Better and earlier diagnosis can only account for a fraction of the current increases in numbers.

Myth: ASD is a behavioral/emotional/mental health disorder.
Fact: Autism related disorders are developmental disabilities and neuro-biological disorders. These disorders manifest in early childhood (usually before the age of three or four) and are likely to last the lifetime of the person.

Myth: People with autism spectrum disorders cannot have successful lives as contributing members of society.
Fact: Many people with autism spectrum disorders are being successful living and working and are contributing to the well being of others in their communities. This is most likely to happen when appropriate services are delivered during the child’s free, appropriate, public education years.

Myth: Autism spectrum disorders get worse as children get older.
Fact: Autism spectrum disorders are not degenerative. Children and adults with autism should continuously improve. They are most likely to improve with specialized, individualized services and opportunities for supported inclusion. If they are not improving, make changes in service delivery.

Myth: Autism spectrum disorders do not run in families.
Fact: More families are experiencing multiple members with an ASD than ever before. In some families, parents with an ASD were misdiagnosed or never diagnosed. In some families, many or all siblings are in the autism spectrum. Most often, one child with autism is born into families who do not have other family members with an autism spectrum disorder.

Myth: All people with an autism spectrum disorder have “savant skills”, like Dustin Hoffman’s character in “Rain Man”.
Fact: Most people with autism spectrum disorders do not have any special savant skills. Some have “splinter skills”, areas of high performance that are not consistent with other skill levels.

Myth: It is better to “wait and see” if a child does better rather than refer the child for a diagnostic assessment.
Fact: The earlier autism spectrum disorders are diagnosed and treated, the better. Outcomes for children’s lives are significantly improved with early diagnosis and treatment. When in doubt, refer, do not wait.

Myth: Autism spectrum disorders are something to be hidden. Other students should not know about the presence of an ASD in a classmate. If you do not tell the other children, they will not know that something is “wrong” with the student with an ASD.
Fact: Students need to know when their classmates have a developmental disability that is likely to effect interactions and learning. Students as young as five years old are able to identify differences in their peers. When students are not given appropriate information, they are likely to draw the wrong conclusions, based on their very limited experiences. Confidentiality rules must be taken into consideration and parental approval sought to teach peers how to understand and interact successfully with children with ASD.

Myth: Certain intensive, behavioral based programs “cure” autism spectrum disorders if they are delivered at the right age and intensity.
Fact: There is no cure for autism spectrum disorders. Early behavior-based interventions have positive effects on some children with autism and less note-worthy effects on other children. Early services need to be based on individual children’s needs and learning styles, not based on programs being sold as “cures” for every child with ASD. Services for adults with the features of autism need to be carefully individualized to the adult.

Myth: Children and adults with autism spectrum disorders are very similar to one another.
Fact: Although all children and adults with autism spectrum disorders have three diagnostic features in common, each child with an ASD is a unique individual. People with autism spectrum disorders differ as much from one another as do all people.

Myth: Children and adults with autism spectrum disorders do not interact very much. They do not have good eye contact. They do not speak well. They are not very bright.
Fact: Children and adults with autism spectrum disorders may speak and/or interact with others. They may have good eye contact. They may be verbal or non-verbal. They may be very bright, of average intelligence or have cognitive deficits.

Myth: The best place to educate a child or adult with an autism spectrum disorder is in a separate program designed for children or adults with autism.
Fact: Educational and adult services delivered to a people with ASD must be specifically designed for each person. Many people with ASD do the best when their services are individualized to them, not designed to be the same for a whole group. Remember that the “I” in IEP or IHP stands for “individualized.” (The outcome for education for all children is to be able to belong to the community and contribute. These goals are often best met when the child with an ASD is educated in a community school with access to the typical children who will become the community of the future.)

Myth: If you have an autism disorder, you will not have any other disorder.
Fact: Autism Spectrum Disorders can co-occur with any other disorders. It is common to find a person with ASD who also has any of the following: Down Syndrome, cerebral palsy, cognitive impairments, deafness, blindness, and medical or seizure disorders.

Myth: it is very hard to know if a person with other disabilities has an autism spectrum disorder.
Fact: Autism is diagnosed by looking at the behavior of the individual. If the individual displays the features of autism, then they may have autism. An assessment should be completed.
The features of autism (summarized) are:
Qualitative differences in reciprocal social interaction (inability to easily create and sustain relationships)
Qualitative differences in BOTH verbal and non-verbal communication (not using and responding to communication signals in a typical way)
Restricted, repetitive and stereotypic patterns of interests, behavior and activities,
Onset of these features early in life usually by age 4.

<hr> About the author

Barbara T. Doyle, MS is a clinical consultant and author of a book which will be published in November of 2003. . The title of the book is ASD from A to Z and it is written by Barbara and her sister Emily Doyle Iland. You may contact Barbara by email: btdoyle00@insightbb.com (%20btdoyle00@insightbb.com) or by writing to #1 Forest Green Drive, Springfield, Illinois 62707-8025.

<hr> ©Barbara T. Doyle and Emily Doyle Iland, 2003

For permission to redistribute, please contact the authors.

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<align ="CENTER"></align> <center>Food Issues for Independent Autistic Adults

Prepared for Autreat
June 24 through 27, 2002
Brantingham, New York

By Patricia E. Clark

Narrative</center>


Introduction

Food Phobias

We begin with the fact that many autistics have very limited or idiosyncratic diets. Reviewing a recently published book, Can’t Eat Won’t Eat, illustrates the extent to which this is considered a problem by some people. It also gives the best approach for long-term benefit. As with any individual difference between people, there is no "solution," and a certain amount of the "problem" lies in the beholder. This presentation is put together from the point of view that we like what we like, and that education in nutrition, food preparation, and phobia extinction will increase our ability to feed ourselves in a nutritionally good way. Some items such as recipes are included partly to help people "get used to" the idea of alternate dishes they "could" be thinking about eating "sometime later."


The Grocery Store

How do you remember what to buy while you are at the store, faced with lights, noise, bewildering visual merchandising efforts, and exertion?

Where ARE the items you want at the grocery store, and why do they put them there? Is there any pattern that applies to most stores, so that you don't have to wander aimlessly for hours every time you enter a new store?

These and other questions about the American supermarket will be answered fairly completely.

Pantry

This is an explanation of why people keep extra "staple" food in the house, not just what they will eat for today. There is also a list of some foods that most people use in day-to-day cooking and that keep well. Most are canned or dried, but there are some listed for refrigeration or freezing.

Motor Planning and the Independently-Living Cook

After you get the food home, then what? All that food has to be sorted, packaged put away, chosen, prepared and/or cooked, then eaten. What a group of chores. Some food preparation problems I have faced are forgetting to turn my feet when I reach sideways to pick up a heavy pot, and missing the pan when I turn over a pancake. The short workshop at the end of the equipment discussion on learning how to analyze and "make the moves that make the meal" could be helpful.

Basic Equipment needed for food preparation

This is a list of standard or standardized cooking equipment typically found in homes in the USA. Having all the basic equipment will make food preparation easier. Having equipment that is similar to what most people have will make it possible to decrease the misery of learning to cook while traveling or camping. I was surprised to see what a compact assortment of tools is actually necessary to prepare and eat meals. This list is what I actually have in the car with me for camping and preparing my own meals at Autreat.

The Basic Practical Kitchen

Points such as amount of counter space, arrangement of appliances, storage and cleanup are addressed briefly.

Vegan and Vegetarian Issues

Many of us are vegetarians or vegans, or "want to be," or are working toward the goal of vegetarianism. References here provide information for transitioning to that diet, and about the nutritional value of foods, and how to buy bulk foods (which may be cheaper and healthier than highly processed foods or those in small containers). Relatively simple vegetarian recipes that use a variety of staple ingredients are included as handouts. One subject covered is calcium and bone strength in relation to protein ingestion – recent study that reverses the idea that high protein diets cause calcium loss.

A comprehensive web site on vegetarian philosophy, a dictionary of definitions, lists for possibly-unfamiliar vegetarian items, spices and other diet-related information is listed as a reference.

Gluten Free?

Then we come to the issue of the Gluten Free diet. I prefer to see it as the Celiac Diet, because I have Celiac Disease, which is terminal unless treated by following the Gluten Free diet.

There are no philosophical issues here. If you are gluten intolerant, malnutrition and autoimmune disorders will consume your life. The diet is not optional in that case.

I do not have any statements to make about the diet for people who definitely do not need it, except that celiac disease is underdiagnosed in this country. Some people have it without knowing about it. It seems to be true, according to my research, that celiac disease, type II diabetes, and autism tend to occur in the same general population. So in my opinion, it’s a good idea to entertain at least the possibility of having inherited those tendencies together.

The preliminary tests for celiac are for IgA levels in the blood. This is not the same type of reaction that is tested when allergies are suspected. Those tests are for IgG.

There is als reference to what I consider surprising new research reported in the New York Times regarding previously unacknowledged symptoms of celiac disease.

The Glycemic Index

The Glycemic Index is replacing the rhetoric about simple carbohydrates and complex carbohydrates. This new way of looking at carbohydrates is all about their actual metabolic effects on blood glucose levels, fatty acid availability, and cholesterol levels. I have included an explanation of what the glycemic index is about, a short list of a few foods' glycemic levels, and how to get a complete listing from the internet. The issues addressed by adopting low-glycemic-index foods seem to directly affect the possibilities of decreasing some "inevitable" problems of aging.

Additional Items

Nutrition Overview - issues observed and treated in children. Because I found two of the treatments suggested here to be extremely important to my ongoing functional level, I have included this for anyone who cares to see it.


Internet web sites for:

Dictionary definitions and lists for possibly-unfamiliar vegetarian items, spices and other diet-related items

Information related to gluten sensitivity

Information about how motor control issues present themselves and how they are treated





Food Phobia




"Can't Eat Won't Eat" book

I'll start out by referring to a book about eating issues. It's "Can't Eat Won't Eat, Dietary Difficulties and Autistic Spectrum Disorders," by Brenda Legge, published by Jessica Kingsley in the United Kingdom.

The book begins with page after page of descriptions of the author’s bizarre and inadequate attempts to get her child to eat a generalized British diet. There are a lot of British words, and I don't really understand exactly "what" some of the foods referred to are. I got the impression that they were sweet puddings and other items that I liked in my childhood.

There is an entire chapter on "Who to Blame" for a child not eating, and another chapter on ways of bribing them to eat. A sense of desperation on the author's part is conveyed by statements such as, "I am still searching for a diet book that will sanction the use of an intravenous drip at mealtimes." She consulted a dietician, who told her that her child's basic diet was a little low on calories and on a couple of vitamins, but that overall it was adequate.

Further, her description of parents cooking Cordon Bleu-level delicacies and presenting them in vast quantities over several years to tiny autistic children with 6-item diets struck me as quite funny.

Still, it felt good when I saw the research. It helped me in deciding what to emphasize in putting together this presentation. I aimed to concentrate on getting the most enjoyment and food value from you what you DO choose to eat.

In structure, this book is mostly an introduction to the problem of limited diet, with descriptions of "cases" in which the child eats the fewest things and the parents are the most distressed and determined. In the late stages of the book there is information that I felt was useful and true.

That information was that schools and researchers with the most experience (and most success) in the field of picky child eaters agree on a few facts. The first is that fear is a part of the picky eating "problem." There is an absolute sense of being afraid of the items that are rejected. Also, in a high proportion of food aversions, it is the sight of the food, not the taste or smell or texture, that provokes the fear response. There are ways of desensitizing people so that the fear response decreases over time WITHOUT forcing difficult experiences on them. Generally, when children are presented with the smell, taste and texture of a strange-looking food over a long period of time, without pressure, they become used to it and the fear subsides.

In the end, the author says that a heavy-handed approach is not the way to go. Parents tend to see food issues as a disciplinary problem, but to the autistic there is often no feeling of choice about the behavior.

Well, "why" would anyone want to desensitize themselves or another person to a food fear? Because it is becoming more and more obvious as research continues that eating a wide variety of foods, especially vegetables and fruits, is the most basic step in achieving and keeping good health during your entire lifetime. Desensitizing is an established procedure for people who are afraid of open spaces or flying, and want the freedom to go everywhere. It can be a humane way to approach food fears. And there is no doubt that good health enhances one's life experience. Since our lifespans as autistics are roughly equivalent to the nearly-80-year expectancy of the neurotypicals among us, we need to
pay attention to the possibility of decreasing age-related deterioration. It is already hard enough to be productively happy if one is autistic.

On beyond the fear factor, some people have food sensitivities to deal with. These can range from mild itchiness to the slow deterioration in health of celiac disease and to sudden anaphylactic shock and instant death. So, sensitivities to food must be dealt with. Downplaying them or refusing to acknowledge them are not viable options.

DESENSITIZING/EDUCATIONAL EXERCISE: SHOW SOME DIET, ALLERGY, AND ETHNIC COOKBOOKS FROM MY PERSONAL LIBRARY SO PEOPLE CAN BROWSE LATER

To learn specialized cooking that avoids certain foods, I would advise just "biting the bullet" and going to a large bookstore in person to see what the "diet" and "allergy" cookbooks are like inside. If you personally check these, you can see if the philosophy, ingredients and techniques of the books will fit into your lifestyle. Newspaper accounts rhapsodizing about the gourmet qualities of cookbooks seldom mention that most recipes have 27 or more ingredients, or that the average price per ingredient is over $6.00 per pound. We need something far more basic on a daily basis.

I have even looked at cookbooks that promise no more than five ingredients per recipe, but they looked supremely boring. It's hard work to find a cookbook or two that really fit you, but they can make a big difference in pleasure and performance.


Why Spices?

The emphasis in food issues for autistics would seem to be on getting the same taste each time. But there are good reasons for investigating spices:

As additional plant materials in the diet, they may add tiny amounts of important nutrients.

Their presence may change some unappealing foods into foods that you want to eat, thus diversifying your diet.

As we get older, our sense of smell and taste decrease. Increasing the taste and smell of food can help older people continue to eat in a healthy way after the foods they loved in their earlier years no longer appeal to them.

As autistics, we probably have as long a lifespan as anyone else, meaning that we will eventually have the problems of "normal aging."

There are more spices and flavors than those listed on the referenced pages at http://www.vegez.com. The main thing to keep in mind is that they are neither good nor bad. They are just possible sensory adjustments for food.

I found -- to my surprise --- after being introduced to Indian foods during the past five years, that I sometimes like very heavily spiced food, if the combination is pleasing to me, and if very little of it is hot peppers.


Shopping for Food
(Grocery Stores)



Shopping in the Grocery Store
Part of this discussion is based on material found at http://isd.saginaw.k12,mi.us/~mobility/grocery.htm . The paper is not signed or attributed to any person. The stated purpose of the unorganized notes there are to prepare caregivers to teach the disabled how to shop. The remaining information is from my 40 years of personal shopping experience

Getting Help/Being Accepted

There is no better way to get help with shopping than to introduce yourself to the manager, and explain your needs. Right, I agree that this doesn’t seem at all natural. But when you compare the effort involved in a three-minute introductory session to all the effort of finding everything in the store by yourself, and perhaps enduring the stares of grocery clerks who are speculating on why you behaving strangely in their store, I think it’s a good trade-off. You don’t even have to talk, if you have some kind of introductory letter stating that you have trouble functioning visually and getting around (or whatever your particular weaknesses are).

If you can shop very early in the morning, or after 9:00 PM, store personnel may be able to assign a spare bagger/service clerk to help you shop. You should be able to just show them your list, with no talking required, if they already know you by sight. I usually pick up what I feel I can deal with off the shelves, and then circle what is left on my list. Then I hunt for a clerk positioning cans (figuring that, if he puts the items away, then he knows where they are), and ask him about the locations of the remaining items on my list. If there are three or more left, he generally gets up and leads me to all of them.

To avoid having to answer the perky, cheerful "How are you?" from a checker, you can ask your helper to teach you to use a self-checkout station in many stores. After being instructed three times, I found I could use one of these well enough to keep from alarming the clerk in charge of the area. My favorite store (next to my house, and very customer-friendly) does not have automatic checkouts. I have memorized a few phrases that seem to satisfy them and stop the checkout chatter fairly effectively. Also, just a grimace/smile will occasionally do the job.

After your first introduction at the store, and occasionally (like once or twice a year) after being helped a lot, it is good to write a short "Thank You" card -- only a sentence or two --- to the staff. This inclines them to continue helping you the best they can. They receive a lot of criticism from strangers, and a little kindness gives them a big boost and puts them solidly on your side. You could even enclose a photo of yourself so that they will recognize you when you come in.

Click here to see a rough map of a typical grocery store layout. (http://www.autistics.cc/Autreat/AutFoodGroceryStore.gif)

If you are shopping by yourself, understanding the logic of how the store is laid out may help you find things. Then you can be working from "inside yourself." You will not be at the mercy of sensory input and visual merchandising schemes.

When you first enter a grocery store, you are often confronted with the flowers and expensive gifts section. Psychologically, this is intended to put you off-balance. It takes your mind off your carefully-prepared shopping list and loosens you up for impulse and luxury purchases. The trick is to steer straight on through it, to the next section: fresh produce and unprocessed foods.

Stores put certain things around the perimeter because this is the highest traffic flow area. They discovered this by making serious studies of the subject. Therefore, they have put the foods with highest on the perimeter, where more people will pass by them. The foods involved include fresh produce, meat, dairy, and frozen foods such as ice cream.

The look of fresh items as you enter the perimeter of the shopping area gives you a strong "fresh" image of the store.

Meat is usually at the back. It accounts for about one-fourth of all items sold, and it therefore draws shoppers past other food displays as they go to the meat counter.

Customers think in categories, so foods are arranged in categories in the store. For instance, canned mushrooms, canned olives and other pizza ingredients will be near each other. Sugar, spices and cooking chocolate are grouped near one another. And salad dressings are grouped near displays of cooking oils and assorted vinegars. Peanut butter is next to jams and jellies.

You can memorize these matchups or fill them in on a map or plot of your regular grocery store to make shopping easier.

Different items have different drawing power. High drawing power items are scattered throughout the store to pull people to their locations. Then items with little drawing power will be arranged around them in an effort to sell them as well.

Laundry soap will be surrounded by clothing treatment options and dryer products, for instance. Quick cake mixes may be accompanied by cake pans designed for special occasions.

Saving Money at the Checkout, and Oops! Why am I here?

Many stores now list Unit Prices. In my favorite stores, these are "per ounce" or "per quart" prices, that make it possible to compare "real prices" among products that differ in package size or weight.

With modern electronic checkouts and inventory management, it is possible to download coupons from the internet or just clip a handful of them, then hand them over to the checker before the individual items start being scanned. The computer will automatically match them up to the merchandise. The main problem with coupons is that most of them are for highly processed foods, which I rarely use.

Generic (store) brands are often just as good as any Brand Name item. Case in point: I know I can eat ONLY Hellman's brand mayonaise. But the Publix store-brand mayonaise looked "safe" to me when I read the ingredient list. I phoned them, and got a return call a few days later -- yes, the store brand is Gluten Free. So now I pay $1.99 for Publix mayonaise instead of $3.50 for Hellman's. At home, we just love to eat easily-prepared foods like carrot-raisin salad, tuna or chicken salad, and coleslaw. The main effort in these is mixing in a dollop of mayonaise with a bit of seasoning and a few chopped or grated items.

There are certain things that I buy nearly every time I shop. These are eggs, milk, bread -- the usual items that are used every day. For things that I don't buy each time, I need a list or I forget them. I keep a 3x5 card and pen between the sink and stove, and write down each item as I use it up in cooking (or as I open the next-to-last container of it). My list is ready for me whenever I decide to go shopping.

When I have sensory overload, am shopping in a new store, or have an especially long list or exotic ingredients, I organize the list so that items that will be located in similar parts of the store are on the list together. I also have to cross off each item as I pick it up if the list is very long.

Long ago, I got a small household allowance once each month. I had to buy enough food to last the entire month with it, or go hungry the final few days. I worked out a system then that others might be able to use.

I knew I prepared three meals each day times 30 or 28 or 31 days. I would go through the store with a paper with the thre daily meals listed, and write in a tally for each one that I bought.

I knew how much flour, eggs, milk and some staples I used each month "normally," so these weren't included in the tally.

But for meat, vegetables, cereal and many other items I put tally marks down until I had enough to cover the entire month. At the same time, I used a "clicker" to add up the cost. If I was running out of money faster than I was running out of list, I would just buy a lot of macaroni and cheese mix, which was cheap in those days, and also rice and beans.

I have always tried to buy cheaper off-brands if they worked as well as name-brands, and I try to shop in at least one other store besides my local grocery in order to save money. We already talked about the generic mayonaise, but WalMart (and some other discount or warehouse store) brands are another case where you can save a lot. When tuna was 90 cents in Publix, I bought the same kind for 52 cents at WalMart. I buy Tussin there for 1/3 the cost at a pharmacy, dog food for 1/3 the cost, and bras - yes bras!! - for $6 instead of the minimum $12 to $16 they would be anywhere else.

Visual overload is a terrible thing at WalMart, but I have been shopping it consistently for years. I find that their floor layout is similar everywhere. By memorizing the locations of the things I need in my local, favorite WalMart, I am able to get through the shopping with very little damage to the rest of my day. I grab a cart, push it in the direction of the item I want to buy, and don’t look at the individual displays until I get to the proper aisle. I have to admit, though, that I was overloaded and dizzy for hours the first time I walked all the way through the store to see where everything was and what they carry.

When there isn’t enough time, or you are already exhausted

When you run out of food and simply cannot face a regular shopping trip, or haven't time before you melt down from hunger, there are a couple of possibilities.

I have been known to go in, buy one apple at the quick checkout, eat it at a table in the store or back outside in my car, and revive enough to do some minimal shopping.

Alternatively, I walkin and make a beeline to one specific place where I know I can get enough to cover a meal or two, for the rest of the day. There is a possibility that you will be more able to shop the following day. For my Minimal Quick-Shop expedition I am thinking of something like: run to the left at the entrance, up the junk food aisle. In my store it has raisins and nuts in it. Then make a right at the rear isle and stop for cheese or for soy yogurt (it's right at the end, so I don't have to look at anything on my way there). A sudden right at that point takes me past the canned foods, where I can pick up 16 ounces of canned pumpkin that I can spice up with what I have at home. The result is a potentially full tummy in all of two-and-a-half minutes of shopping. If I get there early in the morning, no one else will be in the store, and I can get twice as many things for the same price in overload.

I have been known to physically collapse while standing at the checkout, but I have never collapsed in a shopping aisle of the store. Once you get as far as the checkout stand, in my experience, store employees will do ANYTHING necessary to get you paid and out of the store with your groceries. Knowing you will get help from at least the checkout on may convince you that a quick trip might just be the answer if you are completely out of food. It’s not always possible or wise to try to shop for a week or a month.

When I lived in Arizona, it was an 80 mile round trip to the grocery store, and I didn’t have the luxury of making quick trips. That’s when I perfected my grocery listing abilities, keeping the list available and visible at all times while working in the kitchen.

As for getting groceries home, I have used a backpack and walked to the store and home every day for small amounts, when I felt well enough to walk (and lived in a city). Otherwise, you really need to get a taxi or have a car available. I tried a grocery basket like you see the old ladies pulling in inner cities, but the handles are too short for my height, and I felt all twisted trying to pull it with one hand. I can't steer it well enough to push it ahead of me.







Cooking the Food
(Motor Control and other issues)







Motor Control and Dyspraxia


Valerie dejean has a series of web pages giving the history of research into motor control issues at http://www.his.com/~spectrum/history.html

She tells us that motor planning, or praxis, is "the ability of the brain to conceive, organize and carry out a sequence of unfamiliar actions."

It is thought to be "a single function involving three basic processes:

"Ideation or generating an idea of how one might interact with the environment.

"Motor planning, or organizing a program of action.

"Executive, or the actual performance of a motor act."

Researchers at Howard Hughes Medical Institute (HHMI) studied eye movement in relation to high-level planning of body movement.

The idea of "gain control" came up in relation to this. When subjects’ eyes watched small movements of stationary light spots, their eyes made small movements pinning down the locations. However, when their eyes watched perturbations of light spots that were moving, their eyes swung widely in response to the change in movement. The motor movement was adjusted to the amount of control needed. As things slowed down, the movements decreased in range.

"Even walking would be impossible without" this gain control mechanism, according to investigator Stephen G. Lisberger, of the HHMI, "because muscles normally react to stretching by contracting. The brain compensates for this natural tendency by adjusting gain control of muscle contraction to allow the legs to take steps without activating a reflexive contraction." If the gain control and compensatory systems do not work properly, then muscle movements can be erratic and unpredictable.

The same control mechanism seems to apply to the issue of muscle movement when working in a kitchen.

If you reach for a single fixed object, the thought brings out fairly small movements in terms of eye movements or muscle twitches of the person doing the observing. However, using your muscles to control something that changes or moves may provoke larger movements that are harder to control.

In my mind, dealing with something that is cooking is also dealing with a moving object. Its state is changing. I have to catch it and manipulate it at the optimum moment(s) for best results, or it can get away (burn up). I feel anxiety when I am dealing with cooking items, and I tend to over or under move. This results in my having accidents in which I bang a utensil against the side of the pan instead of putting it inside to stir, or turning over lifted food on a spatula and dumping it onto the stove top instead of back into the pan.

I also have trouble working with several food bowls organizing food being prepared, or with chopping or otherwise preparing many ingredients "at once" before cooking or serving them. My hands want to reach for all of them at the same time, rather than carefully pick up each container, prepare the contents, and add the items at the right time. This can result in my suddenly pushing my hand "at" one of the bowls, knocking it sideways, rather than reaching for it.

Food cannot be in the pan, on the stove over the flame, and also be remaining the same. It is changing rapidly, and therefore harder to deal with than food that stays still and waits to be chopped. One thing you CAN do, to help deal with this situation, is to ensure some similarity in the cooking situation each time. It helps to have the utensils and foods you work with, and the arrangement of the cooking area, be familiar. The more you can stick with a familiar routine, the more familiar and stable the situation is, the better you will be able to stay calm and deal with the changing condition of the food.

The same equipment
The same ingredients
The same methods
The same end result

I do try out new ingredients and new recipes, but it’s terribly difficult to do this in a new location, with unfamiliar kitchen arrangement or utensils. My recent move to another state and a different kind of house resulted in about two months of extreme anxiety and repetitious menus while I got used to the arrangement of the kitchen, the unfamiliar equipment, and the storage limitations. This has to be a built-in functional limitation in me, as I have been an absolute gypsy during my lifetime, living in about 30 to 35 different places. Working my way through changes has never gotten any easier than it was when I first began.

REFERENCE http://www.dyxpraxia.com.au )


We can try to adapt strategies which transfer to the kitchen, rather than to the classroom as originally intended by the many "how to" motor training programs advertised on the web.

A few concepts can help us find ways to make learning less stressful:

1. Work from simple to complex movements.

2. If you fail, accept failure. It's part of the learning process. Rather than criticize yourself for making errors, look at the effort involved, not just the outcome.

3. Many cooking "errors" can still be eaten.

If your problem is flipping pancakes, break the movements down into steps:

Pick up the spatula
Twist the spatula until the top of it is facing "up"
Place the edge of the spatula under the edge of the pancake
Give it a small, tentative push across the pan, to see if the pancake is cooked enough to "let go" of the cooking surface
If the pancake lifts itself easily onto the sliding spatula, give a quick thrust of the spatula underneath it (this is somewhat like yanking a tablecloth out from under the place setting quickly enough to leave the plates and silverware in their original positions).
Take a deep breath now. Calm yourself again. The pancake is now up in the air, unable to change (cook) until you put it down again.
When you are ready, quickly twist the spatula 180 degrees (rotating it on the axis of the handle, not pushing it sideways) and let the pancake fall off it so that the uncooked side is down, against the hot pan.
Time for another deep breath, as you wait to pick up the finished pancake in a minute or two.

Keep to set routines. Practice the small steps. Allow plenty of time, especially with a new skill.

Practice leads to progress through little steps. Even Julia Child had to attend school before she could begin to cook.


The Basic Practical Kitchen

My kitchen expertise comes from 50 years of reading women’s magazines such as "Ladies Home Journal" and "Better Homes and Gardens," in addition to having lived at about 35 locations (houses or apartments) during my lifetime.

The minimum amount of counter space that will just barely do for from-scratch cooking is about two feet on one side of the sink, about three feet between sink and stove, and about two feet from stove to refrigerator. That is not a "good" amount, though. The center space should be more like four or five feet to really spread out and not have to keep desperately cleaning up between each step of the preparation.

The modern tendency to have open kitchens with few upper cupboards is counterproductive. You end up having to buy a standing cupboard or use a pantry that is away from the preparation area. This just makes things more complicated, and adds a lot of walking and turning around to the work of preparing food and cleaning up. The closer everything is to the point of use, the better off you are.

I keep utensils like tongs and stirring spoons in a container next to the stove, and spices on an open shelf reachable from both the chopping/mixing area and the stove top. Dishes are stored next to the dishwasher or sink for quick putting away. Pans need to be near or between the preparation and the cooking area.

As for cleanup – how clean is "clean?" If I don’t see any food available for bugs to munch on, then I have done a good job for the moment. Periodically I have to scrub down cabinets and wash the floor, degrease the oven vent in the back of the stove, and so forth. But I wouldn’t think of doing that every day. No visible spots on the counter or in the sink, and no sticky feel, spells clean to me.

Having a dishwasher is helpful, because you can put your teakettle and other grime-catchers in there periodically, which easily removes the greasy film that accumulates on anything kept in the open in a kitchen. Dishwashers are noisy, but you can plan to turn one on and then go to another room or outdoors until it is finished.

I have read many times that dishwashers with the heating cycle turned off don’t use more water or electricity than hand washing. This might even be true, but I’m skeptical.



Working on Motor Problems
Discussion and Practice


What function is causing problems?


Analysis of movement "made" or "not made."


What parts of the movement can be isolated and practiced?


What else can be done to make this task easier?
(for instance, always arranging equipment the same way before starting, or having a 3x5 card on hand to remind you of the steps involved and the things likely to be overlooked – a "Recipe for Action")





Vegetarian and Vegan Issues


Food issues for autistics often take the form of a vegan or vegetarian diet. This can be due to sensory issues or else a conviction that vegan is the only "right" way to eat, for philosophical or environmental reasons.




Vitamin B12 for vegan eaters

People who eat a vegan diet without supplementing vitamin B12 run the risk of getting a serious deficiency disease: pernicious anemia. This, plus nervous system damage, can also be caused by malabsorption due to undiagnosed celiac disease (gluten enteropathy) even in non-vegans. Vegans who can eat wheat, rye, oats and barley can supplement their Vitamin B12 intake with ordinary breakfast cereals or bread. Vegans with celiac disease need to research what sources of vitamin B12 are available to them. The two handouts on this subject provide some options.





The Gluten Free Diet




The "Gluten Free" diet seems to be a fad among parents of autistics.

Aside from that fact, Celiac Disease is a serious, disabling, even fatal, condition, that can be treated only by completely avoiding all wheat, rye, oats and barley for life.

There are ways to diagnose Celiac Disease. If you do not have it, trying a gluten free diet is completely optional. If you do have it, it must become the first priority of your life.

Dozens of links that explain every aspect of celiac disease can be found at the web site
http://www.gflinks.com/~donwiss/gflinks/

Material available includes the genetic basis of the illness, its signs and symptoms, and lists of gluten free foods that can be bought in grocery stores. Articles on how Celiac Disease presents itself, and some of its effects, are included in the "Information" section of this presentation.

There is also an email list of people who trade information they have obtained from manufacturers about the gluten free status of foods. Information about that is found at the Don Wiss web site listed above.

I have been eating exclusively gluten free for the past six years. I will happily go into baking techniques and other technical aspects of getting along without the European grains if anyone present is interested.





The Glycemic Index



Glycemic Index and Exercise Metabolism

This information is from an article that appears on the Gatorade Sports Science Insitute (GSSI) Sports Science Exchange web site, by Janet Walberg Rankin, Ph.D.,Virginia Tech, Blacksburg, Virginia.

The points in this study that affect us as autistics are the long-term metabolic issues. Of course we are not all exercise enthusiasts, or even able to exercise as it is thought of in neurotypical terms. But our bodies have basic metabolic similarities to those of the people around us. In addition to high performance information, this study incorporated data to make recommendations on long-term eating for non-athletes.

A few of the key points about the Glycemic Index concept follow:

The glycemic index (GI) of a food represents the magnitude of the increase in blood glucose that occurs after the food is eaten.

Foods with a low Glycemic Index tend to have a high fructose content and show high amylose/amylopectin ratios. Other aspects of these foods are that they are present in relatively large particles, are minimally processed, and they are ingested along with fat and protein.

"Good" effects of eating lower GI foods 30-60 min before heavy exercise are (as quoted from the report):

* Minimizes the hypoglycemia that occurs at the start of exercise.
* Increases the concentration of fatty acids in the blood.
* Increases fat oxidation and reduces reliance on carbohydrate fuel.

"The effect of the GI on exercise performance is controversial and requires additional research," according to the report, but the "chronic" eating issues are clearer.

Chronic Diet
A longer term feeding study by Kiens and Richter was made in 1966. "Higher insulin sensitively was noted in subjects on the high GI diet and was associated with higher glycogen and triglyceride storage in muscle. Thus, this study suggests that a high GI diet pushes the body towards carbohydrate oxidation (i.e., enhanced insulin sensitivity?)"

Other Health Issues Related to Glycemic Index
"A low GI diet typically improves glucose tolerance and indicators of high blood glucose" (Brand Miller, 1994). "Similarly, Jenkins et al. (1987) found that … those ingesting a low GI diet demonstrated poorer glucose tolerance to an oral carbohydrate challenge than when they consumed the higher glycemic diet. Keins and Richter (1996) also found a better glucose tolerance in normal subjects when they consumed a higher GI diet.

My interpretation of those facts is that it may be that "glucose tolerance" is not the kind of indicator we think it is (i.e., a "good thing," indicating that we do not have type II diabetes). It may instead be an indicator that we have been stressed by chronic exposure to high blood glucose inputs and that we are used to overdriving our pancreas to control the blood glucose levels. The indicator "could" mean that the cycle of high insulin production and high insulin resistance involved in type II diabetes has begun in the individual.

My interactive experience on the internet has shown that many people studying the development of type II diabetes suspect that large amounts of simple (low Glycemic Index) carbohydrates eventually over-drive and exhaust the body's ability to make enough insulin to burn off the resulting blood glucose. There are also studies showing that high levels of glucose in the blood affect cells and are what prevents insulin from working to break down the glucose - - a vicious circle if there ever was one -- resulting in a condition in which more and more insulin is released, with less and less effect. Therefore, chronically overloading the body with simple carbohydrates might not be a good idea in the long run.

This is especially true for the following reason: the population in which autism, celiac disease and type II diabetes all occur the most often is the SAME population. If we are at higher risk for this metabolic disorder, which is increasing alarmingly according to news reports, we are wise to work to prevent it. Many articles and web sites covering this point are available at Don Wiss’s web sites http://www.panix.org/~donwiss and also the sites devoted to the Paleolithic Diet http://www.panix.com/~paleodiet/.

In a 1992 study, Holt et al. (listed on the handout) found that the high Glycemic Index meals caused a greater feeling of hunger than did the low GI meals.

My experience communicating with type II diabetics has taught me that a person can "get used to" high levels of glucose in their blood. Then, suddenly-occurring "normal" levels of glucose cause them to feel weak and sick, shaky, sweaty -- all the symptoms of hypoglycemia, without the low glucose level that would be expected. A warning level of this condition might just be interpreted as "hunger."

Finally, total and low-density-lipoprotein cholesterol may decrease on a lower GI diet. "Synthesis of cholesterol in the liver is sensitive to insulin concentrations, which tend to be higher with a high GI diet (Jenkins 1987; Kiens and Richter 1996). For example, Jenkins et al. (1987) reported a 15% drop in cholesterol of normal subjects after 2 wk on a low GI diet."

Who could argue with this effect? Study after study has shown that low cholesterol levels are somehow connected with good cardiovascular health. Our circulatory systems get stiffer as we grow older anyway. Adding potential fat blockage as a possibility in already-inelastic arteries should be avoided if possible.

Unfortunately, the number of foods that have been tested for their GI is still small. However the listing at http://www.mendosa.com/gilists.htm is updated frequently.

The Gatorade study concluded that, " … because a low-GI diet seems likely to cause lower blood cholesterol and improved appetite control, a low-GI diet on an everyday basis is probably a good choice for athletes and non-athletes alike."



Appendix
Click here to see the URLs for web sites that were sources for this presentation. (http://www.autistics.cc/Autreat/AutreatLinksAddon.html)

Understanding Autism in Adults

Understanding autism can be very difficult, even for individuals with personal experience living with it as a part of them. These resources are designed to give you a deeper understanding of autism in adults. Specifically, this site will discuss the part of the autistic spectrum that is considered "high functioning" - that is, individuals who can live fairly independent of outside help (including both persons diagnosed with classical autism and those with other pervasive development disorders, such as PDD-NOS or Asperger's). However, there are as many different types of autism as there are autistics. Not everyone will be able to live independently, nor should this expectation be unrealistically placed upon someone.

Autistic Expressions/Difficulties



Living with Autism (http://www.geocities.com/growingjoel/whatisitlike.html)
I wrote this to help non-autistics understand what it is like to live in the autistic world. I detail some of my struggles, but also talk about some of the simple pleasures that I have as an autistic.
Unusual Sensory Traits (http://www.geocities.com/growingjoel/senses.html)
On this page, I write about some of the unusual ways that I perceive the world through my senses. Many autistics have unusual sensory traits, which accounts for some of our unusual behaviors.
Volume and Pitch Difficulty Test (http://www.geocities.com/growingjoel/volumevspitch.html)
Can you tell which tone out of a set has the highest pitch? I can, so long as the volume of the tones remains constant. Test yourself on this page!
Face Blindness/Prosopagnosia (http://www.geocities.com/growingjoel/faceblind.html)
Face blindness (also called Prosopagnosia) is a rare condition that makes it difficult to identify friends and family, due to a non-functional face processing center in the brain. This page provides some general information about this condition and my experience with it.
A Glimpse Into Our World


You Want to Take Away My Window (http://www.geocities.com/growingjoel/mywindow.html)
I wrote this "letter" to an imaginary person who represents the people who are not willing to accept me as the person that I am. It expresses the joy I have living "inside myself." It also expresses the hurt and pain that I feel when others try to take away this joy.
Expressing and Feeling Emotions (http://www.geocities.com/growingjoel/feelings.html)
I don't feel the same set of emotions that others do, nor can I always express these emotions. Sometimes I express emotions, such as anger, too freely, while other emotions, such as sorrow, are very difficult for me to express.
Being an Autistic's Friend (http://www.geocities.com/growingjoel/friendship.html)
The best way to find out about our world is to be a friend to us. There are many simple things someone can do which help an autistic enjoy your friendship.
The World I Want to Live In (http://www.autistics.org/library/want.html)
(off-site, written by another autistic)
Autistics often face pressure and depression as a result of who they are. This world can be a very difficult place for an autistic to live.

Overcoming Autistic Weaknesses


Living With Executive Dysfunction (http://www.geocities.com/growingjoel/ef.html)
Executive dysfunction involves problems with planning and executing tasks. Sometimes the "simplest" tasks, such as grooming, are very difficult for autistics due to executive dysfunction. However, there are some things which can be done to help overcome these difficulties.
Help! My child is autistic! (http://www.geocities.com/growingjoel/help.html)
Parents struggle with many confusing emotions and thoughts when they first hear that their young child may be autistic. I provide my insights, as an adult autistic, into common questions a parent may have.
Using Reminders & Checklists (http://www.geocities.com/growingjoel/lists.html)
Because of my significant executive function difficulties, I have trouble organizing tasks, such as grooming or getting ready for bed. I also find myself needing to be reminded of certain things, such as going to work or remembering to eat. The format of these lists and reminders helps determine their success.
Air Travel (http://www.geocities.com/growingjoel/flying.html)
Flying can be a frightening experience for an autistic who fears being overwhelmed by strange sights and sounds. Some of these tips may help make the trip as painless as possible. Increased security at airports makes it more difficult for autistics to fly, but there are some things that can make it easier.
Living With Face Blindness (http://www.geocities.com/growingjoel/faceblindcoping.html)
Many autistics are also face blind. There are some simple things that can make it much easier to cope with face blindness.

The Right to Autistic Existence



Is it Venting or Hate Speech? (http://www.geocities.com/growingjoel/ranthate.html)
Hate speech of all forms is often justified as something else. Sometimes it is "just the facts." Other times it is "obvious." Yet other times, as this essay discusses, it is disguised as "emotional release."
Murder of Autistics (http://www.geocities.com/growingjoel/murder.html)
Autistics have been murdered simply because they are autistic. Often, those who murder autistics receive lighter sentences then those who kill non-disabled persons. This page attempts to document some of these, and also answer some of the common explanations presented for these sad facts. Warning: I do not attempt to relate to, condone, or otherwise understand the actions of the murderers. I do not believe their acts can be justified, nor will they be justified on this site. If you are uncomfortable with this, please do not click on this link.
In addition, this page may be hard to read if you have been subjected to restraint or abuse.

Disability Advocacy



How to Keep Your Barriers (http://www.geocities.com/growingjoel/barriers/index.html)
(New 09 May 2005)
Sometimes pesky autistics (and others) want you to remove a barrier that prevents them from fully participating. But, what if you like your barrier? Sure, the law often says that the barrier has to be removed, but there must be ways of handling that... (note: this article is sarcasm)

What is Autism?



Autism? What is it? (http://www.autistics.org/library/whatis.html)
(off-site, written by another autistic)
If you have any questions about what autism is, and desire some background information, this site contains both information and web links about autism and the related disorders.
Autism-Related Disorders in DSM IV (http://www.autism.org/dsm.html)
(off-site, written by a medical professional)
The DSM IV is the book that is used by American medical professionals to diagnose psychological conditions. This article provides a summary of what it says about Autism, Asperger's, Rett's, and Childhood Disintegrative Disorder - all of which share many of the same "evidences."

Autistic Programmers



My coding just flies (http://www.computerworld.com/news/1997/story/0,11280,1427,00.html)
(off-site, written by a magazine writer)
This Computerworld article details autism in one specific field - computer programming. Many autistics, including myself, are able to program using creative techniques to solve difficult business problems.
From the web site "Growing Joe"

Other "Stuff"



Autism Links (http://www.geocities.com/growingjoel/links.html)
There are many other sites related to Autism. This is my "linkpage" to some of these other sites. This will be updated fairly often as I learn about new sites.
Contact Me (http://www.geocities.com/growingjoel/contact.html)
I welcome email from visitors. I also hope that you will learn about other online places I like to visit.

Functioning labels

From AspiesForFreedom

<!-- start content --> There are many controversies about functioning labels in the autism spectrum. The autism rights movement (http://aspiesforfreedom.org/wiki/index.php?title=Autism_rights_movement) is concerned with some of these controversies.

There are some people who believe autistic people in the different categories are very different from each other and that categories are needed. Others believe classifying people in these ways is insulting and does not accurately describe the autistic person's true abilities.

<table id="toc" border="0"> <tbody><tr id="toctitle"><td align="center"> Table of contents <script type="text/javascript">showTocToggle("show","hide")***********[showhide (javascript:toggleToc())] </td></tr><tr id="tocinside"><td> 1 Asperger's and autism (http://aspiesforfreedom.org/wiki/index.php?title=Functioning_labels#Asperger.27s_an d_autism)

2 High and low functioning (http://aspiesforfreedom.org/wiki/index.php?title=Functioning_labels#High_and_low_fu nctioning)

2.1 View favoring functioning labels (http://aspiesforfreedom.org/wiki/index.php?title=Functioning_labels#View_favoring_f unctioning_labels)
2.2 View opposing functioning labels (http://aspiesforfreedom.org/wiki/index.php?title=Functioning_labels#View_opposing_f unctioning_labels)
2.3 Intelligence tests and autism (http://aspiesforfreedom.org/wiki/index.php?title=Functioning_labels#Intelligence_te sts_and_autism)



3 Political and Social Implications of the terms (http://aspiesforfreedom.org/wiki/index.php?title=Functioning_labels#Political_and_S ocial_Implications_of_the_terms)

4 Controversy over the terms in the autism rights movement (http://aspiesforfreedom.org/wiki/index.php?title=Functioning_labels#Controversy_ove r_the_terms_in_the_autism_rights_movement)

5 See also (http://aspiesforfreedom.org/wiki/index.php?title=Functioning_labels#See_also)

</td></tr></tbody> </table> Asperger's and autism

Currently, Asperger's (http://aspiesforfreedom.org/wiki/index.php?title=Asperger%27s_Syndrome) is classified as a separate diagnosis in the DSM-IV (http://aspiesforfreedom.org/wiki/index.php?title=DSM-IV) but Asperger's is considered an autism spectrum disorder (http://aspiesforfreedom.org/wiki/index.php?title=Autism_spectrum_disorder). The main difference between the definitions for autistic disorder and Asperger's syndrome in the DSM is that autism involves a speech delay and Asperger's syndrome does not. There are many people who believe autism and Asperger's should not be given separate labels in the DSM only because of a language delay and there are some who believe autism and Asperger's have no differences at all.

High and low functioning

The terms high functioning and low functioning are applied to people with an autism (http://aspiesforfreedom.org/wiki/index.php?title=Autism) diagnosis. The actual disctinction is somewhat ambiguous. One common criteria is for high functioning to be used to describe those who have language skills and low functioning to be used to describe those who do not have language skills. Another common criteria is to describe those who score an IQ (http://aspiesforfreedom.org/wiki/index.php?title=Intelligence_quotient&action=edit) above 70-80 as being high functioning, and those who score an IQ below 70-80 as being low functioning. The use of these terms is controversial (http://aspiesforfreedom.org/wiki/index.php?title=Controversial&action=edit).

View favoring functioning labels

Some people believe that those who are described as high functioning -- those who can read, write, and speak -- are fundamentally and obviously higher functioning than those who are described as low functioning -- those who can't read or speak and may need constant care. Most parents and professionals and some autistic people support this viewpoint.

View opposing functioning labels

Others believe that autistics vary greatly in their strengths and skills, so that a one-dimensional, "high" or "low" functioning level is too misleading. They point out that there are some autistic people who have some characteristics considered "high functioning" and other characteristics considered "low functioning". For example, many autistics have excellent written language skills but no oral language skills at all. Others may have high intelligence and no language skills but still need constant care or who injure themselves. They also point out that not all nonverbal autistics are incapable of self-care, and not all autistics with an IQ below 70 or 80 are incapable of reading, writing, or speech. There are also autistics who have language skills some of the time but no language skills at other times.

Some autistic people find high and low functioning labels problematic when they have combinations of skills which are classified as high and low functioning, because having a characteristic considered high functioning makes it harder for them to get support for their more profound difficulties which are considered "low functioning", and having a characteristic considered low functioning makes it harder for them to get their skills recognized in the first place.

Intelligence tests and autism (http://aspiesforfreedom.org/wiki/index.php?title=Intelligence_tests_and_autism)

In addition to the controversy about using intelligence tests to distinguish between high and low functioning, there is controversy about the accuracy of intelligence tests used on autistic people. This is discussed in more detail in the article on intelligence tests and autism (http://aspiesforfreedom.org/wiki/index.php?title=Intelligence_tests_and_autism).

Political and Social Implications of the terms

While it's generally difficult for autistics of any kind of find services and accommodations which actually help them, persons with an Asperger's label often have more difficulty finding services and accomodation for difficulties associated with autism, than those with a "low functioning" label. Because people with Asperger syndrome can speak and often write well, many laymen and professionals still consider them to be not really autistic.

In addition, some people (including many parents of autistic children described as low functioning) see autistic adults doing things they don't believe children described as low functioning will ever be able to do and are offended and/or confused that they share a label with people they do not perceive as being disabled. They believe autism is strictly a severe disability and should be treated as such.

Autistic adults described as high functioning have responded to this by saying a "high functioning" label or the ability to speak and write doesn't mean their difficulties are mild. Autism is often called the "invisible disability" because the difficulties are not obvious and difficult for neurotypicals (http://aspiesforfreedom.org/wiki/index.php?title=Neurotypical) without personal experience to understand. It is especially difficult for people to understand how someone with high intelligence and verbal skills can have difficulty with social functioning and daily living skills, as many autistics described as high functioning or Asperger's do.

Controversy over the terms in the autism rights movement (http://aspiesforfreedom.org/wiki/index.php?title=Autism_rights_movement)

In the autism rights movement (http://aspiesforfreedom.org/wiki/index.php?title=Autism_rights_movement) these terms were part of a controversy over ethical challenges to autism treatment (http://aspiesforfreedom.org/wiki/index.php?title=Ethical_challenges_to_autism_treat ment&action=edit) such as ABA that came up in April 2004 (http://aspiesforfreedom.org/wiki/index.php?title=April_2004&action=edit). In response to this controversy, ABA supporters claim that autism rights activists have Asperger's syndrome (http://aspiesforfreedom.org/wiki/index.php?title=Asperger%27s_syndrome) and are not "really" autistic, so shouldn't be allowed to speak for autistic children. Some of them (such as Lenny Schafer (http://aspiesforfreedom.org/wiki/index.php?title=Lenny_Schafer)) claim that Asperger's and autism are so fundamentally different that Asperger's should be removed from the autistic spectrum completely.

Autism rights activists responded to this by pointing out that many of them have a diagnosis of autism and not Asperger's. They also believe that their opponents use the word "high functioning" or "Asperger's" as an excuse to ignore the opinions of people who disagree with them, while using the word "low functioning" as an excuse to say autistics with that label cannot speak for themselves and give pro-cure advocates an excuse to speak for them.

Some people believe the autism rights movement (especially the anti-cure perspective) might make some sense if it only included autistic people described as high functioning or Asperger's Syndrome (http://aspiesforfreedom.org/wiki/index.php?title=Asperger%27s_Syndrome). Autism rights activists have responded to this by claiming it isn't easy to distinguish between high and low functioning and pointing out that some of them have been called low functioning.

A similar controversy came up again in December 2004 when Amy Harmon published an article in the New York Times (http://aspiesforfreedom.org/wiki/index.php?title=New_York_Times&action=edit) titled, "How About not Curing Us? Some Autistics are Pleading".

What is a High Functioning Autistic Disorder?

High-Functioning Autism, Asperger's Syndrome, Semantic Pragmatic Disorder, Attention Deficit Disorder etc.



Any thoughts you'd like to Share?
Have your say on our Guest Forum! (http://www.phad-fife.org.uk/guestbook.php)
Contrary to popular belief most people within the autistic spectrum are high-functioning individuals of average to high intelligence. All have varying levels of difficulty with instinctive social interaction, perfunctory communication and the processing of nonverbal communication, such as gestures and facial expressions, and sensory inputs, such as background noise and bright lights which many find hard to filter out.

The spectrum encompasses a wide range of diagnoses with multiple variables. Collectively they are often called Pervasive Developmental Disorders or PDDs and may be classed as:

High Functioning Autism (http://web.syr.edu/%7Erjkopp/data/as_diag_list.html): (http://web.syr.edu/%7Erjkopp/data/as_diag_list.html) HFA is the traditional diagnosis for individuals with severe social interaction and communication deficits. Although the distinction with AS is blurred and indeed AS is often considered a subset of HFA, people diagnosed with HFA tend to have a much higher Performance IQ (P-IQ) than Verbal IQ (V-IQ). HFAers tend to avoid social contact more, but are less likely to feel embarrassed in social situations, being relatively unconcerned by other people's opinions. Read the DSM-IV diagnostic criteria for autism (http://ani.autistics.org/dsm4-autism.html).
Asperger's Syndrome (http://web.syr.edu/%7Erjkopp/data/as_diag_list.html): (http://web.syr.edu/%7Erjkopp/data/as_diag_list.html) This is currently the commonest diagnosis for individuals with relatively well-developed language skills but with deficits in instinctive social interaction. AS individuals find it hard to respond to nonverbal signals and social stimuli in the expected way and are often hypersensitive to some shrill sounds, bright lights or textures. Read the DSM-IV diagnostic criteria (http://web.syr.edu/%7Erjkopp/data/as_diag_list.html);
Attention Deficit Hyperactivity Disorder: (http://web.syr.edu/%7Erjkopp/data/as_diag_list.html) Often co-diagnosed with Asperger's Syndrome, ADHDers share hypersensitivity to many sensory inputs and social problems at school with AS indviduals. The condition is characterised by short attention spans and short bursts of overactivity. This contrasts with AS individuals who can, when indisturbed, concentrate on a single task for a considerable length of time. As ADHD individuals tend to exhibit greater interest in social interaction, many psychologists do not class it in the autistic spectrum. Learn more (http://web.syr.edu/%7Erjkopp/data/as_diag_list.html);
Semantic Pragmatic Disorder: (http://web.syr.edu/%7Erjkopp/data/as_diag_list.html) SPD is often considered a close relative of Asperger's Syndrome, but is often accompanied by hyperlexia and is usually diagnosed in people with high IQs who may be prone to pedanticism, have difficulties in processing figurative speech, but generally have less-pronounced social deficits than other high-functioning autistics. Learn more (http://web.syr.edu/%7Erjkopp/data/as_diag_list.html)!.
Symptoms vary considerably too. Relative social skill deficits, resulting from an inability to glean information from the behaviour and gestures of others, often leading to difficult situations. High-functioning autistics may appear socially naïve and lack common sense. People with high-functioning autistic phenomena display varying levels of:

Impairment of social interaction
Impairment of communication
Impairment of social imagination and understanding
Difficulties in filtering out unwanted sensory inputs, such as background noise and bright lights.
Often, but not always, difficulties with fine motor co-ordination, classed as dyspraxia or clumsiness.
Pronunciation:

Aspergherz, Asperjerz, Asburgers or A Burger?

Asperger's Syndrome is named after Austrian psychiatrist, Hans Asperger (http://www.whonamedit.com/doctor.cfm/302.html), who pioneered research into high-functioning individuals with autistic traits. In correct usage it's ***-pairgher with a hard G.
These symptoms may become more pronounced, especially with the onset of adolescence. Failure to fit in with peer groups leads to further withdrawal and feelings of rejection.

There is a wide range of intellect and language skills, but even those with a good vocabulary are greatly hampered by their lack of misinterpretation of everyday social situations. The condition appears to be more common in boys than girls, although recent research suggests it may simply be easier to detect in males.

Often parents may suspect their child's unusual behaviour is casued by neurological difference, but diagnosis may be delayed as routine screening tests do not check social behaviour and nonverbal communication. Initially children may be thought to have a development language delay or hearing impairment.

The following professionals may be involved in assessment and assist in making a diagnosis or providing therapy: Health Visitor - General Practitioner - Clinical Medical Officer - Paediatrician - Psychiatrist, Psychologist (Clinical / Educational) - Speech and Language Therapist - Occupational, Therapist - Education Personnel - Music Therapist - Art Therapist.

<form name="form1" method="post" action=""> <select name="articlemenu" onchange="MM_jumpMenu('self',this,0)"><option value="articles.html" selected="selected">Select an article about life on the spectrum.... </option><option value="daily_life.html">Daily LIfe For Someone Who Is Ably Autistic by Stella MacDonald</option><option value="tocope.html">How to Cope, Interview with an Aspie girl by Stella MacDonald</option><option value="anx_pr_bs.html">Anxieties of Primary Schoolboys by Stella MacDonald</option><option value="anx_high_sch.html">Issues Using Anxiety amongst High School Pupils with AS by Stella MacDonald</option><option value="m_anthro.html">Extraterrestrial Anthropologist by Neil Gardner</option><option value="coping.html">Coping Strategies for Teenagers and Young Adults by Neil Gardner</option><option value="as_rise.html">Is Asperger's Syndrome on the Rise? by Neil Gardner</option><option value="an_aspie_invitation.html">An Invitation to Know You Are an Aspie by Maurice Frank</option></select> </form> What does this mean for those affected?

These difficulties can be both frustrating for those affected and potentially harmful. Their impaired social understanding often means they fail to understand the intricacies of everyday life, which in turn places enormous strain on carers, parents and family.

The level of impairment and its effect on everyday life varies with each individual. Progress can be made, but everyone is different and success can be intermittent.

Schooling

A referral should be made to a pre-school educational home visitor, who is a trained teacher. They will visit at home and make arrangements for play group attendance with the help of a play friend, if required.

Attendance at mainstream nursery is usual - often with time assistance of an auxiliarv. This is also arranged through the Educational Psychology Service. At nursery progress will be monitored and meetings with the professionals involved, and parents. will be held to decide on time most appropriate school placement. This mav be in a mainstream setting.

The educational service is now more aware of the special educational needs of children with ASDs and a working party and Fife Action on Autism (http://www.fifeactiononautism.org.uk/) has drawn up guidelines for teachers. Copies are available through the Auchterderran Centre. Please contact Liz Stewart on 01592 414684 or send her an e-mail (lstewart@fife-education.org.uk).

However, alongside these social difficulties, many display an extraordinary in-depth learned knowledge of a particular subject or activity. While this is a tremendous talent, people closest to them are often frustrated to find that these interests often take over everyday life and may hinder the development of acceptable communication skills. However, with love and care many high-functioning autistic people have made valuable contributions to society, married, had kids and pursued careers based on their lifelong special interests. Read what psychologist and renowned autism specialist Tony Attwood (http://www.tonyattwood.com/paper4.htm) has to say in his article The Discovery of Aspie and just consider that many historical figures such as Albert Einstein exhibited aspie-like traits (Aspie is a familiar term for a person with Asperger's Syndrome used by many diagnosed with this phenomenon).

<center> Frequently Asked Questions about Autism </center>

<center> Temple Grandin, Ph.D.
Assistant Professor
Colorado State University
Fort Collins, CO 80523, USA



</center> 1. How do I know if my child has problems with sensory over sensitivity?

Sounds or visual stimuli that are tolerated by normal children may cause pain, confusion and/or fear in some autistic children. Sensory over sensitivity can vary from very slight to severe. If your child frequently puts his hands over his ears, this is an indicator of sensitivity to noise. Children who flick their fingers in front of their eyes are likely to have visual sensitivity problems. Children who enjoy a trip to a large super-market or a shopping mall usually have relatively mild sensory sensitivities. Autistic children with severe sensory sensitivities will often have tantrums and other bad behavior in a shopping mall due to sensory overload. These children are the ones who will most likely need environmental modifications in the classroom. Older children and adults, who remain nonverbal and have very little language, often have more severe sensitivities than individuals with good language. Children with auditory or visual sensitivity will often have normal hearing and visual acuity tests. The problem is in the brain, whereas the ears and eyes are normal.

2. What sights and sounds are most likely to cause sensory overload or confusion in the classroom?

Every autistic child or adult is different. A sound or sight, which is painful to one autistic child, may be attractive to another. The flicker of fluorescent lighting can be seen by some children with autism and may be distracting to them. It is mostly likely to cause sensory overload in children who flick their fingers in front of their eyes. Replacing fluorescents with incandescent bulbs will be helpful for some children. Many children with autism are scared of the public address system, the school bells or the fire alarms, because the sound hurts their ears. Screeching electronic feedback from public address systems or the sound of fire alarms are the worst sounds because the onset of the sound canNOT be predicted. Children with milder hearing sensitivity can sometimes learn to tolerate hurtful sounds when they know when they will occur. However, they may NEVER learn to tolerate UNexpected loud noise. Autistic children with severe hearing sensitivity should be removed from the classroom prior to a fire drill. The fear of a hurtful sound may make an autistic child fearful of a certain classroom. He may become afraid to go into the room because he fears that the fire alarm or the public address systems may make a hurtful sound. If possible, the buzzes or bell should be modified to reduce the sound. Sometimes only a slight reduction in sound is required to make a buzzer or bell tolerable. Duct tape can be applied to bells to soften the sounds. If the public address system has frequent feedback problems, it should be disconnected.

Echoes and noise can be reduced by installing carpeting -- carpet remnants can sometimes be obtained from a carpet store at a low cost. Scraping of chair legs on the floor can be muffled by placing cut tennis balls on the chair legs.

3. Why does my child avoid certain foods or always want to eat the same thing?

Certain foods may be avoided due to sensory over sensitivity. Crunchy foods such as potato chips may be too loud and sound like a raging forest fire to children with over sensitive hearing. Certain odors may be overpowering. When I was a child I gagged when I had to eat slimy foods like jello. However, some limited food preferences may be bad habits and are not due to sensory problems. One has to be a careful observer to figure out which foods cause sensory pain. For example, if a child has extreme sound sensitivity, he should not be required to eat loud, crunchy foods; but he should be encouraged to eat a variety of softer foods. When I was a child my parents made me eat everything except the two things which really made me gag. They were under-cooked slimy egg whites and jello. I was allowed to have a grilled cheese sandwich everyday for lunch, but at dinnertime I was expected to eat everything that was not slimy.

To motivate a child to eat something he does not like, it is recommended to have a food he really likes such as pizza right in front of him along with the food he dislikes. He is then told that he can have the pizza after he eats a few bites of peas. It is important to have the pizza right there in front of him to motivate eating something he does not like.

4. How do I toilet train my autistic child?

There are two major causes of toilet training problems in children with autism. They are either afraid of the toilet or they do not know what they are supposed to do. Children with severe hearing sensitivity may be terrified of the toilet flushing. The sound may hurt their ears. Sometimes these children can learn if they use a potty chair which is located away from the frightening toilet. Due to the great variability of sensory problems, some children may like to repeatedly flush the toilet but they are still not trained. The thinking of some autistic children is so concrete that the only way they can learn is to have an adult demonstrate to them how to use the toilet. They have to see someone else do it in order to learn. Some children with very severe sensory processing problems are not able to accurately sense when they need to use the bathroom. If they are calm they may be able to feel the sensation that they need to urinate or defecate, but if they experience sensory overload they cannot feel it. This may explain why a child will sometimes use the toilet correctly, and other times he will not.

5. Why do some autistic children repeat back what an adult has said or sing TV commercials?

Repeating back what has been said, or being able to sing an entire TV commercial or children's video is called 'echolalia.' Echolalia is actually a good sign because it indicates that the child's brain is processing language even though he may not be understanding the meaning of the words. These children need to learn that words are used for communication. If a child says the word 'apple,' immediately give him an apple. This will enable the child to associate the word 'apple' with getting a real apple. Some autistic children use phrases from TV commercials or children's videos in an appropriate manner in other situations. This is how they learn language. For example, if a child says part of a breakfast cereal slogan at breakfast, give him the cereal.

Autistic children also use echolalia to verify what has been said. Some children have difficulty hearing hard consonant sounds such as "d" in dog or "b" in boy. Repeating the phrase helps them to hear it. Children who pass a pure tone hearing test can still have difficulty hearing complex speech sounds. Children with this difficulty may learn to read and speak by using flash cards that have both a printed word and a picture of an object. By using these cards they learn to associate the spoken word with the printed word and a picture. My speech therapist helped me to learn to hear speech by lengthening hard consonant sounds. She would hold up a ball and say "bbbb all." The hard consonant sound of "b" was lengthened. Some autistic children learn vowel sounds more easily than consonants.

6. How should educators and parents handle autistic fixations on things such as lawn mowers or trains?

Fixations should be used to motivate schoolwork and education. If a child is fixated on trains, use his interest in trains to motivate reading or learning arithmetic. Have him read about trains or do arithmetic problems with trains. The intense interest in trains can be used to motivate reading. It is a mistake to take fixations away, but the child needs to learn that there are some situations when talking about trains is not appropriate.

The idea is to broaden the fixation into a less fixated educational or social activity. If a child likes to spin a penny then start playing a game with the child where you and the child take turns playing with the penny. This also helps to teach turn taking. A train fixation could be broadened in studying history. A high-functioning child would be motivated to read a book about the history of the railroad. One should build and broaden fixation into useful activities. My career in livestock equipment design started as a fixation on cattle chutes. My high school science teacher encouraged me to study science to learn more about my fixation.

High functioning autistic and Asperger teenagers need mentors to help them develop their talents into a career skill. They need somebody to teach them computer programming or graphic arts. A local computer professional could serve as a mentor or the individual may be able to take a programming class at a community college. Many parents wonder where they can find a mentor for their teenager. Try posting a notice on a bulletin board at a university computer science department or strike up a conversation with the man in the supermarket checkout line who is wearing a badge with the name of a computer company on it. I found one of my mentors in the business world when I met the wife of his insurance agent.

7. What is the difference between PDD and autism?

Autism and PDD are behavioral diagnoses. At the present time there are no medical tests for autism. Autism is diagnosed based on the child's behavior. Both children diagnosed with autism and PDD will benefit from education programs designed for autistics. It is essential that children diagnosed as PDD receive the same education as children diagnosed with autism. Both autistic and PDD children should be placed into a good early education program immediately after diagnosis. Children diagnosed with PDD tend to fall into two groups: (1) very mild autistic symptoms, or (2) some autistic symptoms in a child who has other severe neurological problems. Therefore, some children diagnosed as PDD may be almost normal; and others have severe neurological problems such as epilepsy, microencephaly or cerebral palsy. The problem with the autism and PDD diagnoses is that they are NOT precise. They are based only on behavior. In the future, brain scans will be used for precise diagnosis. Today there is no brain scan that can be used for diagnosing PDD nor autism.

8. Why is Early Intervention important?

Both scientific studies and practical experience have shown that the prognosis is greatly improved if a child is placed into an intense, highly structured educational program by age two or three. Autistic children perform stereotypic behaviors such as rocking or twiddling a penny because engaging in repetitive behaviors shuts off sounds and sights which cause confusion and/or pain. The problems is that if the child is allowed to shut out the world, his brain will not develop. Autistic and PDD children need many hours of structured education to keep their brain engaged with the world. They need to be kept interacting in a meaningful way with an adult or another child. The worst things for a young two to five year old autistic child is to sit alone watching TV or playing video games all day. His brain will be shut off from the world. Autistic children need to be kept engaged; but at the same time, a teacher must be careful to avoid sensory overload. Children with milder sensory problems often respond well to Lovaas-type programs. However, children with more severe sensory processing problems may experience sensory overload. There are two major categories of children. The first type will respond well to a therapist who is gently intrusive and pulls them out of their world. I was this type. My speech therapist was able to "snap me out of it" by grabbing my chin and making me pay attention. The second type of child has more neurological problems, and they may respond poorly to a strict Lovaas program. They will require a gentler approach. Some are 'mono-channel' because they cannot see and hear at the same time. They either have to look at something or they have to listen. Simultaneous looking and listening may result in sensory overload and shutdown. This type of child may respond best when the teacher whispers quietly in a dimly illuminated room.

A good teacher needs to tailor his/her teaching method to the child. To be successful, the teacher has to be gently insistent. A good teacher knows how hard to push. To be successful, the teacher has to intrude into the autistic child's world. With some children the teacher can jerk open their "front door;" and with other children, the teacher has to sneak quietly in their "back door."

9. Why does my child want to wear the same clothes all the time?

Stiff scratching clothes or wool against my skin is sandpaper ripping off raw nerve endings. I am not able to tolerate scratching clothes. Autistic children will be most comfortable with soft cotton against their skin. New underwear and shirts will be more comfortable if they are washed several times. It is often best to avoid spray starch or fabric softeners that are placed in the dryer. Some children are allergic to them. [Note: Caretakers and teachers should also avoid the use of perfume because some children hate the smell and/or they are allergic to it.]

Even today at the age of 49, I have had to find good clothes and work clothes that feel the same. It takes me up to two weeks to habituate to the feeling of wearing a skirt. If I wear shorts during the summer, it takes at least a week before long pants become fully tolerable. The problem is switching back-and-forth. Switching back-and-forth can be made more tolerable by wearing tights with skirts. The tights make the skirt feel the same as long pants.

January, 1998



<hr>

The Geek Syndrome


Autism - and its milder cousin Asperger's syndrome - is surging among the children of Silicon Valley. Are math-and-tech genes to blame?

By Steve Silberman

Nick is building a universe on his computer. He's already mapped out his first planet: an anvil-shaped world called Denthaim that is home to gnomes and gods, along with a three-gendered race known as kiman. As he tells me about his universe, Nick looks up at the ceiling, humming fragments of a melody over and over. "I'm thinking of making magic a form of quantum physics, but I haven't decided yet, actually," he explains. The music of his speech is pitched high, alternately poetic and pedantic - as if the soul of an Oxford don has been awkwardly reincarnated in the body of a chubby, rosy-cheeked boy from Silicon Valley. Nick is 11 years old.

Nick's father is a software engineer, and his mother is a computer programmer. They've known that Nick was an unusual child for a long time. He's infatuated with fantasy novels, but he has a hard time reading people. Clearly bright and imaginative, he has no friends his own age. His inability to pick up on hidden agendas makes him easy prey to certain cruelties, as when some kids paid him a few dollars to wear a ridiculous outfit to school.

One therapist suggested that Nick was suffering from an anxiety disorder. Another said he had a speech impediment. Then his mother read a book called Asperger's Syndrome: A Guide for Parents and Professionals. In it, psychologist Tony Attwood describes children who lack basic social and motor skills, seem unable to decode body language and sense the feelings of others, avoid eye contact, and frequently launch into monologues about narrowly defined - and often highly technical - interests. Even when very young, these children become obsessed with order, arranging their toys in a regimented fashion on the floor and flying into tantrums when their routines are disturbed. As teenagers, they're prone to getting into trouble with teachers and other figures of authority, partly because the subtle cues that define societal hierarchies are invisible to them.

"I thought, 'That's Nick,'" his mother recalls.



Asperger's syndrome is one of the disorders on the autistic spectrum - a milder form of the condition that afflicted Raymond Babbitt, the character played by Dustin Hoffman in Rain Man. In the taxonomy of autism, those with Asperger's syndrome have average - or even very high - IQs, while 70 percent of those with other autistic disorders suffer from mild to severe mental retardation. One of the estimated 450,000 people in the US living with autism, Nick is more fortunate than most. He can read, write, and speak. He'll be able to live and work on his own. Once he gets out of junior high hell, it's not hard to imagine Nick creating a niche for himself in all his exuberant strangeness. At the less fortunate end of the spectrum are what diagnosticians call "profoundly affected" children. If not forcibly engaged, these children spend their waking hours in trancelike states, staring at lights, rocking, making high-pitched squeaks, and flapping their hands, repetitively stimulating ("stimming") their miswired nervous systems.

In one of the uncanny synchronicities of science, autism was first recognized on two continents nearly simultaneously. In 1943, a child psychiatrist named Leo Kanner published a monograph outlining a curious set of behaviors he noticed in 11 children at the Johns Hopkins Hospital in Baltimore. A year later, a pediatrician in Vienna named Hans Asperger, who had never seen Kanner's work, published a paper describing four children who shared many of the same traits. Both Kanner and Asperger gave the condition the same name: autism - from the Greek word for self, autòs - because the children in their care seemed to withdraw into iron-walled universes of their own.

Kanner went on to launch the field of child psychiatry in the US, while Asperger's clinic was destroyed by a shower of Allied bombs. Over the next 40 years, Kanner became widely known as the author of the canonical textbook in his field, in which he classified autism as a subset of childhood schizophrenia. Asperger was virtually ignored outside of Europe and died in 1980. The term Asperger syndrome wasn't coined until a year later, by UK psychologist Lorna Wing, and Asperger's original paper wasn't even translated into English until 1991. Wing built upon Asperger's intuition that even certain gifted children might also be autistic. She described the disorder as a continuum that "ranges from the most profoundly physically and mentally retarded person ... to the most able, highly intelligent person with social impairment in its subtlest form as his only disability. It overlaps with learning disabilities and shades into eccentric normality."

Asperger's notion of a continuum that embraces both smart, geeky kids like Nick and those with so-called classic or profound autism has been accepted by the medical establishment only in the last decade. Like most distinctions in the world of childhood developmental disorders, the line between classic autism and Asperger's syndrome is hazy, shifting with the state of diagnostic opinion. Autism was added to the American Psychiatric Association's Diagnostic and Statistical Manual of Mental Disorders in 1980, but Asperger's syndrome wasn't included as a separate disorder until the fourth edition in 1994. The taxonomy is further complicated by the fact that few if any people who have Asperger's syndrome will exhibit all of the behaviors listed in the DSM-IV. (The syn in syndrome derives from the same root as the syn in synchronicity - the word means that certain symptoms tend to cluster together, but all need not be present to make the diagnosis.) Though Asperger's syndrome is less disabling than "low-functioning" forms of autism, kids who have it suffer difficulties in the same areas as classically autistic children do: social interactions, motor skills, sensory processing, and a tendency toward repetitive behavior.

In the last 20 years, significant advances have been made in developing methods of behavioral training that help autistic children find ways to communicate. These techniques, however, require prodigious amounts of persistence, time, money, and love. Though more than half a century has passed since Kanner and Asperger first gave a name to autism, there is still no known cause, no miracle drug, and no cure.

And now, something dark and unsettling is happening in Silicon Valley.




In the past decade, there has been a significant surge in the number of kids diagnosed with autism throughout California. In August 1993, there were 4,911 cases of so-called level-one autism logged in the state's Department of Developmental Services client-management system. This figure doesn't include kids with Asperger's syndrome, like Nick, but only those who have received a diagnosis of classic autism. In the mid-'90s, this caseload started spiraling up. In 1999, the number of clients was more than double what it had been six years earlier. Then the curve started spiking. By July 2001, there were 15,441 clients in the DDS database. Now there are more than seven new cases of level-one autism - 85 percent of them children - entering the system every day.

Through the '90s, cases tripled in California. "Anyone who says this is due to better diagnostics has his head in the sand."

California is not alone. Rates of both classic autism and Asperger's syndrome are going up all over the world, which is certainly cause for alarm and for the urgent mobilization of research. Autism was once considered a very rare disorder, occurring in one out of every 10,000 births. Now it's understood to be much more common - perhaps 20 times more. But according to local authorities, the picture in California is particularly bleak in Santa Clara County. Here in Silicon Valley, family support services provided by the DDS are brokered by the San Andreas Regional Center, one of 21 such centers in the state. SARC dispenses desperately needed resources (such as in-home behavioral training, educational aides, and respite care) to families in four counties. While the autistic caseload is rising in all four, the percentage of cases of classic autism among the total client population in Santa Clara County is higher enough to be worrisome, says SARC's director, Santi Rogers.

"There's a significant difference, and no signs that it's abating," says Rogers. "We've been watching these numbers for years. We feared that something like this was coming. But this is a burst that has staggered us in our steps."

It's not easy to arrive at a clear picture of whether there actually is a startling rise in the incidence of autism in California, as opposed to just an increase in diagnoses. One problem, says Linda Lotspeich, director of the Stanford Pervasive Developmental Disorders Clinic, is that "the rules in the DSM-IV don't work." The diagnostic criteria are subjective, like "Marked impairment in the use of nonverbal behaviors such as eye-to-eye gaze, facial expression, body posture, and gestures to regulate social interaction."

"How much 'eye-to-eye gaze' do you have to have to be normal?" asks Lotspeich. "How do you define what 'marked' is? In shades of gray, when does black become white?"

Some children will receive a diagnosis of classic autism, and another diagnosis of Asperger's syndrome, from two different clinicians. Tony Attwood's advice to parents is strictly practical: "Use the diagnosis that provides the services."

While diagnostic fuzziness may be contributing to a pervasive sense that autism is on the rise, Ron Huff, the consulting psychologist for the DDS who uncovered the statistical trend, does not believe that all we're seeing now is an increase in children who would have previously been tagged with some other disability, such as mental retardation - or overlooked as perfectly healthy, if quirky, kids.

"While we certainly need to do more research," says Huff, "I don't think the change in diagnostic criteria will account for all of this rise by any means."

The department is making its data available to the MIND Institute at the University of California at Davis, to tease out what's behind the numbers. The results of that research will be published next year. But the effects of a surging influx are already rippling through the local schools. Carol Zepecki, director of student services and special education for the Palo Alto Unified School District, is disturbed by what she's seeing. "To be honest with you, as I look back on the special-ed students I've worked with for 20 years, it's clear to me that these kids would not have been placed in another category. The numbers are definitely higher." Elizabeth Rochin, a special-ed teacher at Cupertino High, says local educators are scrambling to create new resources. "We know it's happening, because they're coming through our schools. Our director saw the iceberg approaching and said, 'We've got to build something for them.'"

The people scrambling hardest are parents. In-home therapy alone can cost $60,000 or more a year, and requires so much dedication that parents (particularly mothers) are often forced to quit their jobs and make managing a team of specialists their new 80-hour-a-week career. Before their children become eligible for state funding, parents must obtain a diagnosis from a qualified clinician, which requires hours of testing and observation. Local facilities, such as the Stanford Pervasive Development Disorders Clinic and its counterpart at UC San Francisco, are swamped. The Stanford clinic is able to perform only two or three diagnoses a week. It currently has a two- to six-month waiting list.

For Rick Rollens, former secretary of the California Senate and cofounder of the MIND Institute, the notion that there is a frightening increase in autism worldwide is no longer in question. "Anyone who says this epidemic is due to better diagnostics," he says, "has his head in the sand."




Autism's insidious style of onset is particularly cruel to parents, because for the first two years of life, nothing seems to be wrong. Their child is engaged with the world, progressing normally, taking first steps into language. Then, suddenly, some unknown cascade of neurological events washes it all away.

One father of an autistic child, Jonathan Shestack, describes what happened to his son, Dov, as "watching our sweet, beautiful boy disappear in front of our eyes." At two, Dov's first words - Mom, Dad, flower, park - abruptly retreated into silence. Over the next six months, Dov ceased to recognize his own name and the faces of his parents. It took Dov a year of intensive behavioral therapy to learn how to point. At age 9, after the most effective interventions available (such as the step-by-step behavioral training methods developed by Ivar Lovaas at UCLA), Dov can speak 20 words.

Even children who make significant progress require levels of day-to-day attention from their families that can best be described as heroic. Marnin Kligfeld is the founder of a software mergers-and-acquisitions firm. His wife, Margo Estrin, a doctor of internal medicine, is the daughter of Gerald Estrin, who was a mentor to many of the original architects of the Internet (see "Meet the Bellbusters (http://www.wired.com/wired/archive/9.11/billnjudy.html)," Wired 9.11, page 164). When their daughter, Leah, was 3, a pediatrician at Oakland Children's Hospital looked at her on the examining table and declared, "There is very little difference between your daughter and an animal. We have no idea what she will be able to do in the future." After eight years of interventions - behavioral training, occupational therapy, speech therapy - Leah is a happy, upbeat 11-year-old who downloads her favorite songs by the hundreds. And she is still deeply autistic.

Leah's first visit to the dentist required weeks of preparation, because autistic people are made deeply anxious by any change in routine. "We took pictures of the dentist's office and the staff, and drove Leah past the office several times," Kligfeld recalls. "Our dentist scheduled us for the end of the day, when there were no other patients, and set goals with us. The goal of the first session was to have Leah sit in the chair. The second session was so Leah could rehearse the steps involved in treatment without actually doing them. The dentist gave all of his equipment special names for her. Throughout this process, we used a large mirror so Leah could see exactly what was being done, to ensure that there were no surprises."

Daily ordeals like this, common in the autistic community, underline the folly of the hypothesis that prevailed among psychologists 20 years ago, who were convinced that autism was caused by a lack of parental affection. The influential psychiatrist Bruno Bettelheim aggressively promoted a theory that has come to be known as the "refrigerator mother" hypothesis. He declared in his best-selling book, The Empty Fortress, "The precipitating factor in infantile autism is the parent's wish that his child should not exist. ... To this the child responds with massive withdrawal." He prescribed "parentectomy" - removal of the child from the parents - and years of family therapy. His hypothesis added the burden of guilt to the grief of having an autistic child, and made autism a source of shame and secrecy, which hampered efforts to obtain clinical data. The hypothesis has been thoroughly discredited. Richard Pollak's The Creation of Dr. B exposed Bettelheim as a brilliant liar who concocted case histories and exaggerated both his experience with autistic children and the success of his treatments.

One thing nearly everyone in the field agrees on: genetic predisposition. Identical twins share the disorder 9 times out of 10.

But the debates about the causes of autism are certainly not over. Controversies rage about whether environmental factors - such as mercury and other chemicals in universally administered vaccines, industrial pollutants in air and water, and even certain foods - act as catalysts that trigger the disorder. Bernard Rimland, the first psychologist to oppose Bettelheim and promote the idea that autism was organic in origin, has become a leading advocate for intensified investigation in this area. The father of an autistic son, Rimland has been instrumental in marshaling medical expertise and family data to create better assessment protocols.

The one thing that almost all researchers in the field agree on is that genetic predisposition plays a crucial role in laying the neurological foundations of autism in most cases. Studies have shown that if one identical twin is autistic, there's a 90 percent chance that the other twin will also have the disorder. If parents have had one autistic child, the risk of their second child being autistic rises from 1 in 500 to 1 in 20. After two children with the disorder, the sobering odds are 1 in 3. (So many parents refrain from having more offspring after one autistic child, geneticists even have a term for it: stoppage.) The chances that the siblings of an autistic child will display one or more of the other developmental disorders with a known genetic basis - such as dyslexia or Tourette's syndrome - are also significantly higher than normal.

The bad news from Santa Clara County raises an inescapable question. Unless the genetic hypothesis is proven false, which is unlikely, regions with a higher than normal distribution of people on the autistic spectrum are something no researcher could ask for: living laboratories for the study of genetic expression. When the rain that fell on the Rain Man falls harder on certain communities than others, what becomes of the children?

The answer may be raining all over Silicon Valley. And one of the best hopes of finding a cure may be locked in the DNA sequences that produced the minds that have made this area the technological powerhouse of the world.




It's a familiar joke in the industry that many of the hardcore programmers in IT strongholds like Intel, Adobe, and Silicon Graphics - coming to work early, leaving late, sucking down Big Gulps in their cubicles while they code for hours - are residing somewhere in Asperger's domain. Kathryn Stewart, director of the Orion Academy, a high school for high-functioning kids in Moraga, California, calls Asperger's syndrome "the engineers' disorder." Bill Gates is regularly diagnosed in the press: His single-minded focus on technical minutiae, rocking motions, and flat tone of voice are all suggestive of an adult with some trace of the disorder. Dov's father told me that his friends in the Valley say many of their coworkers "could be diagnosed with ODD - they're odd." In Microserfs, novelist Douglas Coupland observes, "I think all tech people are slightly autistic."

Though no one has tried to convince the Valley's best and brightest to sign up for batteries of tests, the culture of the area has subtly evolved to meet the social needs of adults in high-functioning regions of the spectrum. In the geek warrens of engineering and R&D, social graces are beside the point. You can be as off-the-wall as you want to be, but if your code is bulletproof, no one's going to point out that you've been wearing the same shirt for two weeks. Autistic people have a hard time multitasking - particularly when one of the channels is face-to-face communication. Replacing the hubbub of the traditional office with a screen and an email address inserts a controllable interface between a programmer and the chaos of everyday life. Flattened workplace hierarchies are more comfortable for those who find it hard to read social cues. A WYSIWYG world, where respect and rewards are based strictly on merit, is an Asperger's dream.

Obviously, this kind of accommodation is not unique to the Valley. The halls of academe have long been a forgiving environment for absentminded professors. Temple Grandin - the inspiring and accomplished autistic woman profiled in Oliver Sacks' An Anthropologist on Mars - calls NASA the largest sheltered workshop in the world.

A recurring theme in case histories of autism, going all the way back to Kanner's and Asperger's original monographs, is an attraction to highly organized systems and complex machines. There's even a perennial cast of hackers: early adopters with a subversive streak. In 1944, Asperger wrote of a boy "chemist [who] uses all his money for experiments which often horrify his family and even steals to fund them." Another boy proved a mathematical error in Isaac Newton's calculations while he was still a freshman in college. A third escaped neighborhood bullies by taking lessons from an old watchmaker. And a fourth, wrote Asperger, "came to be preoccupied with fantastic inventions, such as spaceships and the like." Here he added, "one observes how remote from reality autistic interests really are" - a comment he qualified years later, when spaceships were no longer remote or fantastic, by joking that the inventors of spaceships might themselves be autistic.

Clumsy and easily overwhelmed in the physical world, autistic minds soar in the virtual realms of mathematics, symbols, and code. Asperger compared the children in his clinic to calculating machines: "intelligent automata" - a metaphor employed by many autistic people themselves to describe their own rule-based, image-driven thought processes. In her autobiography, Thinking in Pictures, Grandin compares her mind to a VCR. When she hears the word dog, she mentally replays what she calls "videotapes" of various dogs that she's seen, to arrive at something close to the average person's abstract notion of the category that includes all dogs. This visual concreteness has been a boon to her work as a designer of more humane machinery for handling livestock. Grandin sees the machines in her head and sets them running, debugging as she goes. When the design in her mind does everything it's supposed to, she draws a blueprint of what she sees.

"In another age, these men would have been monks, developing new ink for printing presses. Suddenly, they're reproducing at a much higher rate."

These days, the autistic fascinations with technology, ordered systems, visual modes of thinking, and subversive creativity have plenty of outlets. There's even a cheeky Asperger's term for the rest of us - NTs, "neurotypicals." Many children on the spectrum become obsessed with VCRs, Pokémon, and computer games, working the joysticks until blisters appear on their fingers. (In the diagnostic lexicon, this kind of relentless behavior is called "perseveration.") Even when playing alongside someone their own age, however, autistic kids tend to play separately. Echoing Asperger, the director of the clinic in San Jose where I met Nick, Michelle Garcia Winner, suggests that "Pokémon must have been invented by a team of Japanese engineers with Asperger." Attwood writes that computers "are an ideal interest for a person with Asperger's syndrome ... they are logical, consistent, and not prone to moods."

This affinity for computers gives teachers and parents leverage they can use to build on the natural strengths of autistic children. Many teenagers who lack the motor skills to write by hand find it easier to use a keyboard. At Orion Academy, every student is required to buy an iBook fitted with an AirPort card. Class notes are written on electronic whiteboards that port the instructional materials to the school server for retrieval. (At lunch, the iBooks are shut off, and if the kids want to play a two-person game, they're directed to a chess board.) The next generation of assistive technology is being designed by Neil Scott's Archimedes Project at Stanford. Scott's team is currently developing the equivalent of a PDA for autistic kids, able to parse subtle movements of an eyebrow or fingertip into streams of text, voice, or images. The devices will incorporate video cameras, head and eye tracking, intelligent agents, and speech recognition to suit the needs of the individual child.

The Valley is a self-selecting community where passionately bright people migrate from all over the world to make smart machines work smarter. The nuts-and-bolts practicality of hard labor among the bits appeals to the predilections of the high-functioning autistic mind. The hidden cost of building enclaves like this, however, may be lurking in the findings of nearly every major genetic study of autism in the last 10 years. Over and over again, researchers have concluded that the DNA scripts for autism are probably passed down not only by relatives who are classically autistic, but by those who display only a few typically autistic behaviors. (Geneticists call those who don't fit into the diagnostic pigeonholes "broad autistic phenotypes.")

The chilling possibility is that what's happening now is the first proof that the genes responsible for bestowing certain special gifts on slightly autistic adults - the very abilities that have made them dreamers and architects of our technological future - are capable of bringing a plague down on the best minds of the next generation. For parents employed in prominent IT firms here, the news of increased diagnoses of autism in their ranks is a confirmation of rumors that have quietly circulated for months. Every day, more and more of their coworkers are running into one another in the waiting rooms of local clinics, taking the first uncertain steps on a journey with their children that lasts for the rest of their lives.

In previous eras, even those who recognized early that autism might have a genetic underpinning considered it a disorder that only moved diagonally down branches of a family tree. Direct inheritance was almost out of the question, because autistic people rarely had children. The profoundly affected spent their lives in institutions, and those with Asperger's syndrome tended to be loners. They were the strange uncle who droned on in a tuneless voice, tending his private logs of baseball statistics or military arcana; the cousin who never married, celibate by choice, fussy about the arrangement of her things, who spoke in a lexicon mined reading dictionaries cover to cover.

The old line "insanity is hereditary, you get it from your kids" has a twist in the autistic world. It has become commonplace for parents to diagnose themselves as having Asperger's syndrome, or to pinpoint other relatives living on the spectrum, only after their own children have been diagnosed.

High tech hot spots like the Valley, and Route 128 outside of Boston, are a curious oxymoron: They're fraternal associations of loners. In these places, if you're a geek living in the high-functioning regions of the spectrum, your chances of meeting someone who shares your perseverating obsession (think Linux or Star Trek) are greatly expanded. As more women enter the IT workplace, guys who might never have had a prayer of finding a kindred spirit suddenly discover that she's hacking Perl scripts in the next cubicle.

One provocative hypothesis that might account for the rise of spectrum disorders in technically adept communities like Silicon Valley, some geneticists speculate, is an increase in assortative mating. Superficially, assortative mating is the blond gentleman who prefers blondes; the hyperverbal intellectual who meets her soul mate in the therapist's waiting room. There are additional pressures and incentives for autistic people to find companionship - if they wish to do so - with someone who is also on the spectrum. Grandin writes, "Marriages work out best when two people with autism marry or when a person marries a handicapped or eccentric spouse.... They are attracted because their intellects work on a similar wavelength."



That's not to say that geeks, even autistic ones, are attracted only to other geeks. Compensatory unions of opposites also thrive along the continuum, and in the last 10 years, geekitude has become sexy and associated with financial success. The lone-wolf programmer may be the research director of a major company, managing the back end of an IT empire at a comfortable remove from the actual clients. Says Bryna Siegel, author of The World of the Autistic Child and director of the PDD clinic at UCSF, "In another historical time, these men would have become monks, developing new ink for early printing presses. Suddenly they're making $150,000 a year with stock options. They're reproducing at a much higher rate."

Genetic hypotheses like these don't rule out environmental factors playing a role in the rising numbers. Autism is almost certainly not caused by the action of a single gene, but by some orchestration of multiple genes that may make the developing child more susceptible to a trigger in the environment. One consequence of increased reproduction among people carrying some of these genes might be to boost "genetic loading" in successive generations - leaving them more vulnerable to threats posed by toxins in vaccines, candida, or any number of agents lurking in the industrialized world.

At clinics and schools in the Valley, the observation that most parents of autistic kids are engineers and programmers who themselves display autistic behavior is not news. And it may not be news to other communities either. Last January, Microsoft became the first major US corporation to offer its employees insurance benefits to cover the cost of behavioral training for their autistic children. One Bay Area mother told me that when she was planning a move to Minnesota with her son, who has Asperger's syndrome, she asked the school district there if they could meet her son's needs. "They told me that the northwest quadrant of Rochester, where the IBMers congregate, has a large number of Asperger kids," she recalls. "It was recommended I move to that part of town."




For Dov's parents, Jonathan Shestack and Portia Iversen, Silicon Valley is the only place on Earth with enough critical mass of supercomputing resources, bio-informatics expertise, genomics savvy, pharmaceutical muscle, and VC dollars to boost autism research to the next phase. For six years, the organization they founded, Cure Autism Now, has led a focused assault on the iron-walled fortress of the medical establishment, including the creation of its own bank of DNA samples, available to any scientist in the field on a Web site called the Autism Genetic Resources Exchange (see "The Citizen Scientists (http://www.wired.com/wired/archive/9.09/disease.html)," Wired 9.09, page 144).

At least a third of CAN's funding comes from donors in the Valley. Now Shestack and Iversen want to deliver the ultimate return on that investment: better treatments, smarter assistive technology - and, eventually, a cure.

"We have the human data," says Shestack. "Now we need the brute-force processing power. We need high-density SNP mapping and microarray analysis so we can design pharmaceutical interventions. We need Big Pharma to wake up to the fact that while 450,000 people in America may not be as large a market as for cholesterol drugs, we're talking about a demand for new products that will be needed from age 2 to age 70. We need new technology that measures modes of perception, and tools for neural retraining. And we need a Web site where families with a newly diagnosed kid can plug into a network of therapists in their town who have been rated by buyers - just like eBay."

The ultimate hack for a team of Valley programmers may turn out to be cracking the genetic code that makes them so good at what they do. Taking on that challenge will require extensive use of technology invented by two people who think in pictures: Bill Dreyer, who invented the first protein sequencer, and Carver Mead, the father of very large scale integrated circuits. As Dreyer explains, "I think in three-dimensional Technicolor." Neither Mead nor Dreyer is autistic, but there is a word for the way they think - dyslexic. Like autism, dyslexia seems to move down genetic pathways. Dreyer has three daughters who think in Technicolor.

One of the things that Dan Geschwind, director of the neurogenetics lab at UCLA, finds fascinating about dyslexia and autism is what they suggest about human intelligence: that certain kinds of excellence might require not just various modes of thinking, but different kinds of brains.

"Autism gets to fundamental issues of how we view talents and disabilities," he says. "The flip side of dyslexia is enhanced abilities in math and architecture. There may be an aspect of this going on with autism and assortative mating in places like Silicon Valley. In the parents, who carry a few of the genes, they're a good thing. In the kids, who carry too many, it's very bad."

Issues like this were at the crux of arguments that Bryna Siegel had with Bruno Bettelheim in a Stanford graduate seminar in the early '80s, published in Bettelheim's The Art of the Obvious. (Siegel's name was changed to Dan Berenson.) The text makes poignant reading, as two paradigms of scientific humanism clash in the night. Siegel told "Dr. B" that she wanted to do a large study of children with various developmental disorders to search for a shared biochemical defect. Bettelheim shot back that if such a marker were to be uncovered it would dehumanize autistic children, by making them essentially different from ourselves.

Still an iconoclast, Siegel questions whether a "cure" for autism could ever be found. "The genetics of autism may turn out to be no simpler to unravel than the genetics of personality. I think what we'll end up with is something more like, 'Mrs. Smith, here are the results of your amnio. There's a 1 in 10 chance that you'll have an autistic child, or the next Bill Gates. Would you like to have an abortion?'"



For UCSF neurologist Kirk Wilhelmsen - who describes himself and his son as being "somewhere on that grand spectrum" - such statements cut to the heart of the most difficult issue that autism raises for society. It may be that autistic people are essentially different from "normal" people, he says, and that it is precisely those differences that make them invaluable to the ongoing evolution of the human race.

"If we could eliminate the genes for things like autism, I think it would be disastrous," says Wilhelmsen. "The healthiest state for a gene pool is maximum diversity of things that might be good."

One of the first people to intuit the significance of this was Asperger himself - weaving his continuum like a protective blanket over the young patients in his clinic as the Nazis shipped so-called mental defectives to the camps. "It seems that for success in science and art," he wrote, "a dash of autism is essential."

For all we know, the first tools on earth might have been developed by a loner sitting at the back of the cave, chipping at thousands of rocks to find the one that made the sharpest spear, while the neurotypicals chattered away in the firelight. Perhaps certain arcane systems of logic, mathematics, music, and stories - particularly remote and fantastic ones - have been passed down from phenotype to phenotype, in parallel with the DNA that helped shape minds which would know exactly what to do with these strange and elegant creations.

Hanging on the wall of Bryna Siegel's clinic in San Francisco is a painting of a Victorian house at night, by Jessy Park, an autistic woman whose mother, Clara Claiborne Park, wrote one of the first accounts of raising a child with autism, The Siege. Now 40, Jessy still lives at home. In her recent book, Exiting Nirvana, Clara writes of having come to a profound sense of peace with all the ways that Jessy is.

Jessy sent Siegel a letter with her painting, in flowing handwriting and words that are - there is no other way to say it - marvelously autistic. "The lunar eclipse with 92% cover is below Cassiopeia. In the upper right-hand corner is Aurora Borealis. There are three sets of six-color pastel rainbow on the shingles, seven-color bright rainbow on the clapboards next to the drain pipe, six-color paler pastel rainbow around the circular window, six-color darker pastel rainbow on the rosette ..."

But the words aren't the thing. Jessy's painting is the thing. Our world, but not our world. A house under the night sky shining in all the colors of the spectrum.

<table border="0" cellpadding="0" cellspacing="0" width="100%"> <tbody><tr align="left" valign="top"><td width="1%">
</td><td bgcolor="#ffffff" width="94%">Asperger syndrome and adults

</td><td width="5%"> </td></tr> <tr align="left" valign="top"> <td width="1%"> </td> <td class="v8" valign="top" width="94%"> Asperger syndrome is one of the autism spectrum disorders, and is classified as a developmental disorder that affects how the brain processes information. People with Asperger syndrome can show a wide range of behaviours and social skills, but common characteristics include difficulty in forming friendships, communication problems (such as an inability to listen or a tendency to take whatever is said to them literally), and an inability to understand social rules and body language.

There is no cure and no specific treatment. Asperger syndrome doesn't improve, although experience helps to build up coping skills. Social training, which teaches how to behave in different social situations, is generally more helpful than counselling. Cognitive Behaviour Therapy is being increasingly used to assist the person with Asperger Syndrome understand and manage their behavioural responses.

Typical adult symptoms
More males than females have Asperger syndrome. While every person who has the syndrome will experience different symptoms and severity of symptoms, some of the more common characteristics include:


Average or above average intelligence
Inability to think in abstract ways
Difficulties in empathising with others
Problems with understanding another person's point of view
Hampered conversational ability
Problems with controlling feelings such as anger, depression and anxiety
Adherence to routines and schedules, and stress if expected routine is disrupted
Inability to manage appropriate social conduct
Specialised fields of interest or hobbies.
The emotions of other people
A person with Asperger syndrome may have trouble understanding the emotions of other people, and the subtle messages that are sent by facial expression, eye contact and body language are often missed. Because of this, a person with Asperger syndrome might be seen as egotistical, selfish or uncaring. These are unfair labels, because the affected person is neurologically unable to understand other people's emotional states. They are usually shocked, upset and remorseful when told their actions were hurtful or inappropriate.

Sexual codes of conduct
Research into the sexual understanding of people with Asperger syndrome is in its infancy. Studies suggest that affected people are as interested in sex as anyone else, but many don't have the social or empathetic skills to successfully manage adult relationships.

Delayed understanding is common; for example, a person with Asperger syndrome aged in their 20s typically has the sexual codes of conduct befitting a teenager. Even affected people who are high achieving and academically or vocationally successful have trouble negotiating the 'hidden rules' of courtship. Inappropriate sexual behaviour can result.

Being a partner and parent
Some affected people can maintain relationships and parent children, although there are challenges. Dutch research suggests that the divorce rate for people with Asperger syndrome is around 80 per cent.

A common marital problem is unfair distribution of responsibilities. For example, the partner of a person with Asperger syndrome may be used to doing everything in the relationship when it is just the two of them. However, the partner may need practical and emotional support once children come along, which the person with Asperger syndrome is ill equipped to provide. When the partner expresses frustration or becomes upset that they're given no help of any kind, the person with Asperger syndrome is typically baffled. Tension in the relationship often makes their symptoms worse.

The workplace
The Commonwealth Department of Family and Community Services, in conjunction with a range of specialist employment services, helps to place people with disabilities in the workforce. A person with Asperger syndrome may find their job opportunities limited by their disability. It may help to choose a vocation that takes into account the individual's symptoms, and plays to the strengths rather than the weaknesses. The following career suggestions are adapted from material written by Temple Grandin, who has high-functioning autism and is an assistant professor at Colorado University, USA.

Careers to avoid - suggestions
Careers that rely on short term memory should be avoided. Examples include:

Cashier
Short order cook
Waitress
Taxi dispatcher
Air traffic controller
Receptionist.
Career suggestions for visual thinkers
Suggestions include:

Computer programming
Drafting
Commercial art
Photography
Equipment design
Mechanic
Appliance repair
Handcraft artisan
Webpage designer
Video game designer
Building maintenance
Building trades.
Career suggestions for those good at mathematics or music
Suggestions include:

Accounting
Computer programming
Engineering
Journalist, copy editor
Taxi driver
Piano (or other musical instrument) tuner
Filing positions
Statistician
Physician
Mathematician
Bank teller
Telemarketing.
Common issues for partners
An adult's diagnosis of Asperger syndrome often tends to follow their child's diagnosis of autism spectrum disorder. This 'double whammy' can be extremely distressing to the partner who has to cope simultaneously with both diagnoses. Counselling, or joining a support group where they can talk with other people who face the same challenges, can be helpful. Some common issues for partners include:

Feeling overly responsible for their partner.
Failure to have their own needs met by the relationship.
Lack of emotional support from family members and friends who don't fully understand or appreciate the extra strains placed on a relationship by Asperger syndrome.
A sense of isolation, because the challenges of their relationship are different and not easily understood by others.
Frustration, since problems in the relationship don't seem to improve despite great efforts.
Frequent wondering about whether or not to end the relationship.
Difficulties in accepting that their partner won't recover from Asperger syndrome.
After accepting that their partner's Asperger syndrome won't get better, common emotions include guilt, despair and disappointment.
Where to get help

Your doctor
Autism Victoria Tel. (03) 9885 0533
The Centre for Developmental Disability Health Victoria (CDDHV) Tel. (03) 9564 7511
Asperger Syndrome Support Network Tel. (03) 9845 2766
Bendigo Regional Autism/Asperger Network (BRAAN) Tel. (03) 5442 5926
Commonwealth Department of Community and Family Services Tel. 1300 653 227
Alpha Autism Employment Program Tel. (03) 9681 9311
Things to remember

A person with Asperger syndrome often has trouble understanding the emotions of other people, and the subtle messages that are sent by facial expression, eye contact and body language are often missed.
Research suggests that the divorce rate for people with Asperger syndrome is around 80 per cent.
Social training, which teaches how to behave in different social situations, is generally more helpful to a person with Asperger syndrome than counselling.
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The Syndrome of Hyperlexia vs. High Functioning Autism and Asperger's Syndrome

Phyllis Kupperman
Sally Bligh
Kathy Barouski

Center for Speech and Language Disorders
479 Spring Rd., Elmhurst. II. 60126
(708)530-8551

<hr> When we first met Abie at the age of three. he was very active, had temper tantrums, was echolalic, and did not appear to understand much of what was said to him. He had unusual fears and did not play well with other children. Yet he had been reading since the age of 2. He at first appeared to have characteristics of high-functioning autism or of Atypical Pervasive Developmental Disorder. As we watched him develop, however. it became evident to us that he also resembled the description in the literature of children with hyperlexia. Ararn & Healy (1988). Huttenlocher & Huttenlocher (1973). Now. four years later, Abie is in a regular first grade class. His language comprehension is 4 years above chronological age and his IQ is in the 120's. He makes inferences, comprehends verbal subtleties and understands humor. He transfers what he learns into new situations. He still. however. has a bit of difficulty socializing. He remains somewhat egocentric and complains that the other kids don't always do what he wants them to do.

We asked ourselves, "Is this child with hyperlexia at the top of the continuum of what would be considered high-functioning autism? Does he resemble those individuals described by Asperger? (Asperger 1944). Or is hyperlexia a separate subgroup of children with Pervasive Developmental Disorder? We began to look at other children in our caseload who exhibited the characteristics of precocious reading development and disordered language acquisition. with concomitant social and behavioral deficits. They were a surprisingly homogeneous group with predictable patterns of development. And, as we researched the literature, those studies of hyperlexia which accepted the criteria of precocious reading abilities emerging in preschool years within a context of disorders of language acquisition and comprehension. All presented cases with striking similarities to ours. Richman & Kitchell (1981), Cohen, Campbell & Gelardo (1987). Healy. et al. (1982).

The present paper will describe the pattern of development of 20 children who exhibit characteristics of the syndrome of hyperlexia as compiled from questionnaires completed by their parents. The questionnaire was designed to plot the various symptoms at 6 month intervals, so that the ebb and flow of particular symptoms could be seen longitudinally. Parents were encouraged to consult evaluation reports, IEPs, and medical records to assist in remembering their child's development. The data was then compiled at each 6 month interval and general patterns began to emerge. A pattern of development was considered to be characteristic if it was exhibited in 75% of the children in our study. This data was then compared to literature descriptions of individuals with high-functioning autism and Asperger's syndrome. (Future studies will compare responses to our questionnaire by parents of children in these two groups).

Since it was a criterion for inclusion in our study, all children read precociously before the age of 5. There were, however, individual differences in the emergence of reading. Some children were automatic decoders at a very young age. Others began as sight readers and later "cracked" the phonetic code. Some began reading only single words and when they began to read sentences, skipped over the "unimportant" little words. Comprehension of reading closely mirrored comprehension of verbal language, though the hyperlexic children generally responded better and at an earlier age, when presented with written information or questions. This characteristic differs from a savant skill in that it is not an isolated ability. Information acquired by reading can be accessed and language can be learned with the assistance of reading. The characteristic of precocious reading, while common in high-functioning autistic children, is not always present. Precocious reading was only occasionally mentioned in case histories of Asperger's Syndrome described by (Wing 1981).

Language acquisition in children with the syndrome hyperlexia followed a similar pattern in most subjects in this study. Most children's first words developed at 12-18 months, but approximately half' of the children lost those words and did not begin to regain them until after age two. Language then was acquired through Gestalt processing. Early speech and language attempts were echolalic (both immediate and delayed). Language was learned in "chunks" and whole phrases and even entire dialogues were used as conversation. There were abnormalities in form and content of language, with stereotypic intonation patterns, perseveration, pronoun reversals and idiosyncratic use of words or phrases. Comprehension of single words exceeded comprehension in context and interpretation of words was concrete and literal. Many hyperlexic children showed a marked improvement in their language abilities beginning at age 4- 1/2 to 5, although difficulties in holding social conversations persisted. This pattern of language acquisition is similar to that of many high-functioning autistic children reported in the literature. Difficulties with social language persist in autistic individuals throughout adulthood. Individuals with Asperger's syndrome are reported to have developed good grammatical language skills though they too have difficulty comprehending subtle, abstract language (Wing 1981).

In the early years, hyperlexic children in this study exhibited many of the behaviors typically associated with autism: self-stimulatory behaviors. need for routine, ritualistic behaviors. tantrums, sensitivity to sensory input (noise, odors. touch), general anxiety and specific unusual fears. These behaviors subsided substantially as growth in language, generally at age 4 1/2 to 5. These children were generally affectionate with their families and were better able to relate to adults than children. By age 5. they became able to participate in structured interactive games with peers and imaginative play developed, Difficulty in socializing and handling large groups remained problematic through the primary grades. Though hyperlexic children often succeed in regular education classrooms with some minor modifications in instruction. The diminishing of autistic symptoms at a relatively young age with the concomitant growth in language implicates language processing problems as a causal factor. This may also be true for high-functioning autistic children, though there may be other factors which would cause autistic behaviors to persist longer in this group. Descriptions of Asperger's syndrome include stereotypic movements of body and limbs, and intense fascination with one or two subjects to the exclusion of all else (Wing 1981).

Our group of children with hyperlexic syndrome generally had normal gross motor development and normal neurological tests. Fine motor skills were often delayed. Most were boys, though there were two girls in this study. Most had no family history of disorders, though several families were positive for autism and learning disability in the previous generation. Individuals with Apserger's Syndrome were described as clumsy and uncoordinated, while autistic individuals are often described as being very well coordinated.

While children with the syndrome of hyperlexia may be classified as having a Pervasive Developmental Disorder, and while there may be some similarities to children with autism and/or Asperger's syndrome, we would argue that there is merit in classifying this syndrome as a separate sub-category of P.D.D. The differentiating characteristics appear to center around the hyperlexic children's ability to develop higher level language skills and the children's innate desire to develop social relationships, though they may lack the pragmatic language skills to do so effectively. The primary reason for developing a specific diagnostic category for hyperlexia is to assure that hyperlexia is well understood so that appropriate treatment strategies can be developed. In our experience in speech and language therapy with these children, it is crucial that the reading skill be employed as a primary means of developing language. Reading can also be used for behavioral management and for assisting the child in understanding classroom routine. Because precocious reading is not expected in a child who exhibits a language disorder and aberrant behaviors, it is often regarded as a "splinter skill" and is not exploited as a means for learning. It is natural for a teacher to try restating a direction verbally when a child does not respond, but these children need the direction to be written so they have something tangible to look at. We also have used this approach with autistic children who read precociously. The major difference we have seen has been the autistic children's reduced ability to utilize the information acquired through reading within meaningful language.

Most of the children in our study have had intensive therapy which fully utilized their reading capacities and they have families who have been creative in devising ways to help these children learn and socialize. Certainly this will have an effect on the ultimate outcome for these children.

<table align="center" cellpadding="5" cellspacing="1" width="95%"> <tbody><tr><td>http://www.autistics.org/images/alogo.png (http://www.autistics.org/)</td><td align="right">home (http://www.autistics.org/) | project (http://www.autistics.org/project) | library (http://www.autistics.org/library) | links (http://www.autistics.org/links/directory) | discussion (http://www.autistics.org/forum/)</td> </tr> <tr><td colspan="2"><table bgcolor="#000000" border="0" cellpadding="5" cellspacing="0" width="100%"> <tbody><tr><td>Autism Information Library </td></tr></tbody></table></td> </tr><tr><td colspan="2" valign="top"> Autistic Adults and Adolescents

Autistic adolescents and adults are people you might encounter every day but not know it. There are many things you might think about us, but often they are not true.

Some of us may appear selfish or self-absorbed or egotistical because we do not respond adequately when someone says something, or because we talk on and on about one subject with little regard to the rest of the conversation.

We may look childish in some or all situations because we seem to overreact to things that other people would not react to at all. We may seem gullible and naive, and some people out there will take advantage of that. You may wonder why we never seen to learn that there are people in the world we can't trust.

Others may appear almost paranoid, trusting no one at all. Some might seem "psychotic" because of our eccentric behaviours or suspiciousness. Some of us might talk to ourselves out loud.

Some of us might seem changeable or "fake". This is because it is fairly common for autistic people to develop a coping mechanism of a "normal" looking persona with which to interact. Some of us have more than one such persona, and hence seem changeable. Sometimes this persona is fairly convincing, and other times it looks false and "put on".

Some of us might appear like loners, or eccentric loners. Some of us might appear as the opposite -- people who try hard to be social but don't know how.

Some of us might appear eccentric, and others might appear, in the common language, retarded. You might love us or hate us or like us or tolerate us or dislike us. You might keep your kids away from us because we might look like there is something wrong with us.

We might look heartless because we do not have the same emotions you do, or more often don't show them in the ways you expect. We might look too sensitive, or too insensitive, or both. We might seem too immature or too mature, or both.

We might do things we have done since we were kids. When we were kids, adults might have thought of some of these things as cute, but we are now adolescents and adults who are too old for cute. Now, such things might be irritating or annoying, at best.

We might have so much skill in one area that we seem to be deliberately trying not to understand another area. We might seem to be manipulative or callous when at one moment we can do something "complicated" like fix your computer, recite things, or do complex mathematics, and the next moment cannot see that you are upset, or what to do about it.

We might seem to ignore you, or seem to ignore your feelings. We might not know when to stop talking, or when to start. We might not be able to talk, or might talk oddly or in short repeated phrases. We might use extremely formal and precise language and intonation patterns, or speak in a monotone or singsong. We might talk what seems to be normally.

Some of us may have been diagnosed as children with autism. Some of us may have been diagnosed with attention deficit disorder. Some of us may not have been diagnosed with anything at all, or held other diagnoses. Some of us may have been called "psychotic". Some of us may have facial tics left over from decades of antipsychotic medications that did us no good. Some of us may have facial and other tics for no reason other than our neurological makeup.

We might now be undiagnosed, be diagnosed with autism, Asperger's Syndrome, atypical autism, or things that have nothing to do with developmental disabilities. We may have additional diagnoses of depression, anxiety, psychosis, personality disorders, epilepsy, or many other things. We might think of ourselves as "cured" (even some of us who are quite obviously still autistic), or might look forward to "cure", or might hate the idea of "cure". We might have "a few autistic traits".

We come from all different backgrounds, and have all different appearances. We are classified as high-functioning, low-functioning, anything in between, and any combination of functioning levels. Different people might classify us as different functioning levels depending on when and where they see us. We may obviously have something different about us, or might just appear odd in some ways. Some of us wouldn't appear different at all until you got to know us. We may have been lower-functioning, or higher-functioning, or the same level of functioning, as children. Our skills might fluctuate dramatically. We present our autism in as many ways as there are autistic people, and have as many opinions about it.

We may have high-paying jobs, or low-paying jobs, or no jobs. We may live alone or with our parents or in a group home or with roommates or have families. We may be students or work in any of many fields. We may live in a house or apartment or institution, or be homeless.

The thing we all have in common is that we are autistic. We may not always appear like the child that so many people have heard of, who rocks and bangs his head on the wall and does not make eye contact and is completely mute and will never speak and lives in an institution. We may not appear like the "Rainman" savant who does complex calculations in his head but is otherwise autistic. We may not be Einstein or the Silicon Valley computer programmer stereotype. We may look like these things sometimes but not others. But we are autistic. We share some of the same difficulties and the same advantages in being autistic. We have differences, yes -- everyone does -- but we do have that in common.

The next time you think of autistic children, remember that children grow up. The next time you think of someone who you get furious with because they just "don't get" something simple even though they can do some things that are complicated, remember us. The next time you see someone walking down the street flapping their hands in front of their face and making odd noises, remember us. They may not be autistic, but you never know. Autistic children grow up, into autistic adolescents and autistic adults. We do not appear always the same as autistic children, though we may have a lot in common with them that may or may not be visible to someone unfamiliar with autism.

Autistic adults and adolescents exist, and live in this society, but not necessarily connect to it normally, every day. We are out there, trying to live. Remember our existence.

A M Baggs, 1999

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<center>The Truth of The Myth of The Lack of Recovery From Autism Modified 31 January 2002

</center>


There has been much written recently about the supposed "recovery" from autism that some people alleged to have made, or to have caused in children. Usually these people are those that sell some sort of treatment program, or else they are parents or autistic people that wish so very much for the autism to be gone that they blind themselves to the truth, and exist in a state of denial. Though these people love to "debunk" the "once an autistic, always an autistic" truism, the fact is that autism is a lifetime condition, and you do not recover from autism. That does not mean that significant improvement is not possible, or that there is no hope. Quite the contrary, in fact; if there is one thing I have learned in recent months, it is that there is always hope.

Autism is still largely unknown in terms of cause. While there are a lot of suspected triggers for autism, the only thing that has been proven so far is that it is a condition linked to genetics. Autism runs in families... there is no doubt about that, so I will not get into it here. However, it is also obvious when looking at the evidence that there is more to it than genetics alone. There is an environmental cause, or maybe there are many environmental causes. Many things are suspected, but so far there has been no credible evidence for any specific cause other than genetics, and perhaps rubella infection of the mother during pregnancy.

Whatever the cause, autism appears to be a condition that starts prenatally. There have been many recent discoveries of abnormalities in the autistic brain, and in some of these cases, such unusual development could only have happened prenatally. The autism is often unnoticed until around eighteen months, but that does not mean it was not there previously. The best evidence refutes the idea that autism is caused by vaccines or other postnatal insults. These abnormalities are permanent; the development that goes on during this time cannot be reversed. At the most basic level, these specific abnormalities ARE autism. The outward signals, like the familiar flapping, lack of eye contact, speech impairments, inability to be social, et cetera, are symptoms of the autism... but they are not the autism itself. Some things, like mental retardation and inability to speak, appear to be neurodevelopmental abnormalities caused by other symptoms of autism, namely auditory processing problems. It would be inaccurate to say that these things ARE autism, just as it would be incorrect to say that body aches, fever, and cough ARE the flu. The flu is an infection of the influenza virus, primarily in the lungs; the aches, fever, and cough are symptoms. The difference may seem unimportant, but it is not.

To people that see autism as a set of behaviors, it seems that autism may be curable. If the behaviors can be trained out of the child, the autism will cease to exist, right? They seem to think that autism is a bunch of habits that have to be broken. It is not. Autism is a brain abnormality, and training out the tell-tale behaviors does not make it go away. It hides it... nothing more. Those people that say that they are recovered autistics, or that their expensive treatment programs can sometimes "cure" autism, are missing the point. If any one of those "cured" autistics (assuming they were really autistic initially) were to be examined with fMRI (functional magnetic resonance imaging) or other scanning technology, the brain would show up as being autistic, not normal. The autistic behaviors are signs of autism, but they are not in themselves autism.

Autism is not a behavioral abnormality. It is not a set of nasty habits. It is not something that any treatment program can cure. Again, the most credible evidence shows that autism happens to a fetus long before birth, and that cannot be changed by teaching the child anything. This does not mean that treatment is undesirable or futile... it is not. However, the goal needs to be realistic. I think that the biggest single factor in determining outcome in autistic children is the severity of the auditory processing problems. Most, if not all, autistic children have these problems to some degree, but they vary greatly in severity. Those with minor problems often end up hyperverbal and above average in intelligence, more in the Asperger's pattern than in the classical autism pattern. Those with the worst problems may never develop receptive (and thus expressive) speech, and will be mentally retarded for life.

As I discussed in my article Practical Problems With ABA Programs (http://home.att.net/%7Eascaris1/more-abahtm), the brain develops according to patterns of usage, especially rapidly in the first few years of life. If the child's brain cannot process the auditory information coming in from the ears, he will hear a confusing jumble of noise, rather than coherent speech, when someone talks to him. The innate ability for a child to automatically learn language cannot proceed if the incoming auditory messages are scrambled. Thus, the neurons in the growing brain develop randomly rather than in patterns that result in verbal ability, and the ability to reason. The longer this auditory deficiency continues, the longer the neurons will continue to develop in a haphazard (and useless) manner, and the harder it will be to remediate the growing language difficulties. The longer the audio processing problems continue, the lower the child's intelligence is likely to be. It is vital to get the language processing centers working as early as possible in childhood. The most logical way to do this is to help the auditory processing centers to do their job. Any early treatment program for autistic children must center on getting those two areas of the brain working as soon as possible. In other words, the treatment program must take a neurodevelopmental approach rather than a behavioral approach, for maximum benefit.

Even if such a program is applied with maximum effect, the brain will still be an autistic brain. The child may end up with a condition closer to Asperger's Syndrome (a mild form of autism), and there is a good chance that he will go to normal schools and be quite successful in life, with little or no external assistance most of the time. These people may learn to imitate normal behavior quite well, and it may seem to them, and to others around them, that they are no longer autistic. Of course, though, they are. Inside the skull, the brain will still have a thinner posterior cortex, a smaller cerebellum, an abormally sized amygdala and corpus callosum, and be ~10% larger than the comparable normal brain (as well as have other abnormalities that are too complex to describe here). Changing the behavior to a more normal type does not change the abnormal "wiring" in the brain, and it is that abnormal wiring that IS autism.

I think that the majority of reported cases of recovery from autism are a result of the inability to really define what autism is. People that were diagnosed as severely autistic often are not expected to ever live independently, or even talk. Thus, it seems like a remarkable recovery when a "hopeless" person as such does learn to speak, to relate to others, and shows above-average intelligence. To that person's doctors, parents, and to himself (when he learns of how "bad" he was before), it appears that there has been an amazing recovery. In many of these cases, what really happened is that the person was high-functioning, but presented initially as low-functioning. This is quite common; it is often very hard to tell a high-functioning autistic from a low-functioning autistic during early childhood (since many of the differences in function level relate to development that takes place later in childhood). IQ tests that attempt to measure the abilities of nonverbal children as such are a joke, and not a funny one. The child that goes from "no hope" to a very high level of function seems to be recovered, but that is not the case. Similarly, a child that has severe auditory problems will present as very low functioning and nearly totally disconnected with the world. He will often seem to recover if his auditory centers and verbal centers are helped to function. These people still have autistic brains, though, and although the signs are more subtle, they are still present. In later years, the still-autistic child can be trained to emulate a normal person, but that does not mean he is one.

There have been a lot of tales of normal parents claiming to have cured their autistic children circulating on the internet lately. I have read these accounts, and it really saddens me. Since parents think (erroneously) that autism is a set of undesirable behaviors, they believe that training the child to act more normally (in other words, to act in accordance with NT neurology, not his own) is the same as curing autism. Those kids are not cured. They are trained seals. They are autistic as they ever were, living behind the mask that was forced upon them by unaccepting parents and professionals. Autistic children can be trained to act normal, just as normal children can be trained to act autistic. Do you think that if someone successfully trained a normal child to appear autistic, that he actually would be autistic? In other words, is it possible to cause autism in someone by training them to act autistic? Of course it is not. And in the very same way, it is impossible to remove the autism by training it away. The autism is still there, hidden under the normal-like concealing behaviors that were drilled into the child's mind.

When social demands on the "recovered" child increase, it will be evident that the autism is still there. I have heard some sad stories of bewildered parents saying, "How can this be? We cured that years ago!" They see it as a relapse, but it is not. It is the autism, which has always been present, showing itself yet again. This can be terribly distressing for parents and for the child, who often believes himself that he has been cured. It is like a second traumatic loss for the parents, who mourned their child's condition once already, years ago. Don't set yourself up for this letdown. Puberty and increasing social demands make the autism appear to come back.

You can see the autism in adults that claim to be recovered, too. No matter how hard they try, it is just not possible to maintain the illusion of normality all the time, even if they themselves believe they are cured. It just takes too much effort to pretend to be something you are not. There is a reason autistic people behave as they do... it is because their behaviors are normal for the brain configuration they have. This relationship is seen all over the animal kingdom. Cats act like cats because they have cat brains. Wolves act like wolves because they have wolf brains. Normal people act like normal people because they have normal people brains. And, of course, autistics act like autistics because they have autistic brains. No matter what they have been trained to act like in public, autistics are what they are, and that is autistic. Autistic brains are wired differently than normal brains, and that is permanent.

Some autistics make it into adulthood, still believing that they have been cured. Make no mistake, though; inside those heads is a brain that is as autistic as it ever was. Outwardly, the behavior may be superficially normal, but it is just an approximation, a poor facsimile of normality. Eye contact, body language, and other things like that are forms of communication, and autistics do not have the wiring in the brain to communicate that way. Sure, they can fake eye contact, but they still do not communicate with eye contact. They still do not know the normal person's "code" of nonverbal communication. If they do, it is something that must be processed cognitively, with a great deal of thought and effort-- so much so that they cannot process what the person may be saying verbally. As such, it is rather obvious that the "recovered" autistic adult is, in fact, autistic still. No matter how ingrained or habitual the normal-like behaviors have become, the fact is that they are still foreign behaviors to anyone with an autistic brain, and the autistic will never be able to use them as will a person for whom they are native behaviors.

Temple Grandin thought she was, and referred to herself as, a recovered autistic when she wrote her autobiographical book Emergence: Labeled Autistic in 1986. When she wrote her second book (nine years later), Thinking in Pictures, she simply called herself autistic, as she does to this day. Like all other adults who claim to be recovered (and who were really autistic in the first place), her autism was never really gone. But look at her today... she is a success, a leader in her field, a Ph.D. holder. Autistic people can succeed if they are allowed to do so. The time spent in futile efforts to teach away the autistic brain could be better spent preparing the person for a successful life as an autistic person. Most "intervention" for autistic children today aims to obliterate the autism, and this severely limits the efficacy of those programs. Although many of them have good effects in several ways, they are crippled by this ill-conceived notion that autism can be cured or reduced. It cannot... and it should not. Most autistics to whom I have communicated with would not wish to be cured. It is who we are; to cure the autism is to destroy the autistic, and most of us do not want to be destroyed. There is no normal person inside the autistic, waiting to be let out. The autism goes all the way to the center; strip away the autism and there will be nothing left.

I hold that autism itself is not a disability. That does not mean that many autistic people are not disabled by their condition; I know very well that many of them are severely incapacitated. However, I do not consider these incapacitations to be by the autism itself as much as the surrounding syndrome. I do not think that the sensory difficulties are a core part of the autism, although all autistics seem to have some of one form or another. I do not think that retardation or low IQ is a part of autism either, since it is a function of the sensory problems, not the autism itself (and not all autistics have such problems). I do not think that the anxiety and depression so common in autistics are part of the core condition either. In essence, all of the really nasty things about autism are not actually the autism itself-- they are the things that come with it, but are not core features in themselves.

Autism, when stripped of all of the negative things as above, is a condition where the person has more of an affinity for things or concepts than people. Absent the auditory processing problems, autistics (including those with AS) are often well above average in intelligence. Such people become inventors, scientists, engineers, entrepreneurs, and innovators, if they are permitted to use their unique abilities and not have their self-esteem crushed by the unyielding pressure normal people exert to conform and to be social. People that like to think about science and engineering rather than parties and socializing are vital for the advancement of humanity. Far from being impaired or disabled, these people simply have abilities in different areas than normal people-- abilities that are vital for society. As such, autistic people, and autism in general, should not be pitied or cured (as in the elimination of autism). By all means, we should help autistic children to use their senses in a useful way, which will connect them with the world and allow their speech and intelligence to develop. They will not be normal, but that is OK. Genius and greatness are abnormal, after all.

Being autistic is not like being mentally ill... it is not a disease that should be cured. Autistic people are just another equally-valid variety of human. If it would be objectionable to wish to prevent, "cure," or defeat certain races of people, it should be equally bad to advocate those things with regard to autistics. Imagine the furor that would be caused (and rightly so) it a university attempted to do research into preventing or "curing" the black (negroid) race, for example, in order to fix problems like sickle-cell anemia that are much more common in that group of people. If it is unacceptable to rid the world of any race, whether by eugenics or any other means, then it should be just as unacceptable to do it to autistics. Cure the problems that are genetically common within the group, eliminate the discrimination against the group, but do not try to wipe out the group.

Autistic people are a different kind of human... unique and wonderful people that are much more than the defective individuals that normal people see them as. As such, I find it extremely hard to support the idea of preventing, curing, defeating, overcoming, or recovering from autism. The idea that successful people that were diagnosed as autistic have overcome their autism presupposes that autism precludes success. That is a horrible thing to think... not just because it needlessly feeds into the idea that autism is tragic, but also because it simply is not true. They have not recovered from, overcome, or defeated their autism any more than a normal person has overcome his neurological typicality to become a success. To define autistics as inherently lacking of success potential only seeks to define the condition in terms of poor outcome, and to limit the aspirations of those with autism and those that care about them.

The people that claim to be recovered autistics are mostly high-functioning autistics that have been trained to hide their true nature and act like normal people. If this was done early enough in life, the person may have become so accustomed to the learned behaviors that he himself does not realize that his normality is a façade. That does not change who and what people like that are, and it is a shame that they have to act like that which they are not to get treated like human beings. This points to a problem with society, not to a problem with autism. It puzzles me why people never stop and consider why it is so acceptable to ostracize autistics for being different. They blame the autism or the autistic person himself for not being accepted by the crowd; essentially, for not being normal.

I cannot see how it would be moral or right to teach a group of people to hide their true selves and live a lie for a lifetime so that they can be accepted and live a relatively normal life. There is an implicit acceptance of discrimination against these people inherent in that philosophy. Many people claim that by curing autism, or by preventing it in the future, such horrible treatment of people can be avoided. Yes, that is true. If we were able to develop a surgery that would make all races of people look like whatever race predominated in an area, and were to genetically engineer all future children to be like the norm, then racism could be eliminated too. Does that make such forced homogenization a justifiable goal? Elimination of racism by the elimination of differing races is not something any enlightened person would consider, so why should they consider elimination of discrimination against autistics by eliminating autistics to be any better?

I say that we should quit viewing autism as a horrible, tragic thing, and start seeing autistics as different, but still quite valuable and worthy. They are not defective, pathetic people that are a burden on society. We do need to work on finding a solution to the sensory difficulties that occur disproportionately in the autistic population, which are probably the cause of the all-too-common retardation and lack of verbal ability... just as we should find a solution to other problems that happen most often in certain groups of people, like sickle-cell anemia. Let's stop this silly and harmful practice of treating autism like a behavioral disorder rather than a neurological difference. Like it or not, autism is permanent, despite what some parents, teachers, and even some "former" autistics will tell you. That does not mean that a very high level of function is not possible. That should be the goal... to help the autistic person learn to be the best autistic he can be, not to make him seem normal. The autistic mind is too valuable a resource to waste by occupying it with such mundane tasks as presenting the appearance of normality.

[QUOTE=speedo]This link is quite interesting. It has several case studies and suggests that HFA might sometimes appear to onset in early to late adulthood.


My thinking is that the diagnoses in early to late adulthood are not due to a later onset, but rather misdiagnoses. In my case, it was a *missed* diagnosis, as I was not taken to a doctor for my lack of speech. I did finally start talking at about age 4 1/2. By the time I was in school, I was having great social difficulties, and was evaluated, and was considered as having "emotional problems". I had also been considered as having what today would be called ADHD. Now, because the diagnosis was done in adulthood, I received a PDD-NOS diagnosis. (rather than Asperger's syndrome, because speech was delayed in coming. Dave

I thikn you are probabyl correct. I thought it was an interesating idea tho..

ME :D

Here is more on autism in adults. I will post more info as I find it.
I hope nobody minds me using this forum as my personal index of citations.. :p
It just seems to me that there is so little information about autism in adults, and most of us here are adults and desperately need this info so we can get a better understanding of ourselves and others.

Me :D

my son has autism and i have adhd. i've noticed many similarites in both of us that are way too uncanny. i'd like to know more about adult autism myself. i do know both diagnosis on are same spectrum but opposite ends. he has the hyperfocusing skills like i do. he is a genius in math and pragmatics. i'm the creative genius. it's funny, really. my daughter shows signs and will be tested for adhd this summer. i found your post relevant and interesting.

Is there a difference between AS (asperger's) and HFA (high fx Autism)?

Is there a difference between AS (asperger's) and HFA (high fx Autism)?

I think there is delayed acquisition of language skills in HFA.

To answer the most recent question: there is a delay of onset of language skills for HFA, but not in Asperger's. Aspies often have exceptional verbal language skills.

Thanks so much, Speedo, for posting all this info. You definitely took the Aspie approach, which I greatly admire! My father has Asperger's, he's retired now, but worked writing programs for satellite communications technology. He knows every computer language that exists and is extremely talented with that and all things mechanical. He spends a lot of time holed up in the garage inventing things.

I am Bipolar I and ADHD and read an article recently that there seems to be a genetic link between Bipolar I, Schizophrenia and Autism. Although the disorders are very different, there are definite similarities among the three. I am definitely not autistic, but children of autistic parents often have some autistic traits and I do. I have extreme sensory sensitivities, have auditory processing problems, and am an entirely visual thinker. Oftentimes, it takes me a great while to find words to express the images that I see in my mind. I can also be very logical; however, I see the end first and then have to go back and reason through the entire process to explain it to someone else. I am also excellent at remembering very weird minute details, but am a walking executive of dysfunction. I also have weird rituals that must be adhered to no matter what (the checkbook must be kept on the radiator, the minutes for the alarm time an alarm clock must only be prime numbers).

There is a history of mental illness to varying degrees on both sides of my family as well as ADHD, so I am a strong believer in the genetic link between the three.

I'm not sure if this was link was listed, but I post occasionally on Wrong Planet (I am not sure if it's against the rules to put a link to another forum-- moderators please tell me if I broke a rule in mentioning it) and it is a wonderful discussion forum for individuals with Asperger's, HFA, ADHD. There are many highly intelligent people that post there on a variety of interesting topics. If you have a question, people will be racing to give you very detailed, well-researched answers!

With regard to differences between HFA and AS. There are quite a few:

1) Later onset in Aspergers. Aspies generally aren't diagnosable until after age 5 or so. In the case of autism it is usually diagnosable by age 3.

2) since aspies have no speech delay they tend to have a higher verbal IQ than performance IQ. Autistics often have a performance IQ higher than the verbal IQ.

3) Neurological differences..... There is evidence to suggest that aspie brains have a greater abundance of white matter than NT's while auties tend to have more grey matter than NT's. (NT=neurotypical person). It looks as though aspies and autistics both have problems with the ratio of white matter relative to grey matter. In either case you end up with poor connectivity between various regions of the brain.

4) Head size differences during development. As I recall (I'm not sure) aspie kids will experience a rate of head growth that is higher than normal (and higher than auties) early in their development while autistic kids just tend to have bigger than normal heads as adults. The bottom line is that both aspies and auties frequently have big heads but they do it a little differently.


Me :D