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  #1  
Old 08-31-05, 09:31 PM
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Mild Autism in Adults

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


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  #2  
Old 09-02-05, 10:44 PM
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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..
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.

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Old 09-02-05, 10:49 PM
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A collection of interesting links on autism

http://www.autistics.cc/
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ADHD.... It's not just for kids anymore...
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"Aye yam what aye yam." (Popeye)
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Old 09-03-05, 02:06 AM
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A study of hyperlexia in a group of children.
http://www.hyperlexia.org/gordy001.html

AS and adults
http://www.betterhealth.vic.gov.au/b...nd_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...ergers_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/P...spergers_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.p...ename=asd.html

An interesting article about autism and "labeling"
http://aspiesforfreedom.org/wiki/ind...tioning_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/adultswit...s_w_asperg.htm

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

ASDMyths and Facts
http://www.newhorizons.org/spneeds/a...oyle_myths.htm
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ADHD.... It's not just for kids anymore...
It all seems impressive when you don't know what it means. (H. Rickey, 1987)
"Aye yam what aye yam." (Popeye)
"Sig personnas illegitum non carborundum." (unknown)
The computer lets you make more mistakes faster, with the exception of tequila and a handgun. (M. Radcliffe)
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  #5  
Old 09-03-05, 11:45 AM
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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?7,0,301...x,sitemap.html
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Old 09-03-05, 01:20 PM
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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.

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  #7  
Old 09-03-05, 11:38 PM
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Quote:
Originally Posted by speedo
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).

Quote:
Originally Posted by speedo
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.

Quote:
Originally Posted by speedo
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.

Quote:
Originally Posted by speedo
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".

Quote:
Originally Posted by speedo
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.
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Old 09-04-05, 01:29 AM
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Quote:
Originally Posted by HighFunctioning
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.

Quote:
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.

Quote:
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.

Quote:
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' ?

Quote:
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.


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Old 09-11-05, 08:05 PM
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Speedo

Thats all great information and I think it's very helpful to adult aspies/autistics
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Old 09-11-05, 09:52 PM
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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.

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Old 09-17-05, 08:39 PM
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Autism Myths and Facts

http://www.newhorizons.org/spneeds/s...header5_07.gif http://www.newhorizons.org/spneeds/s...ges/spacer.gif
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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.

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.


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 or by writing to #1 Forest Green Drive, Springfield, Illinois 62707-8025.

©Barbara T. Doyle and Emily Doyle Iland, 2003
For permission to redistribute, please contact the authors.
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Food Issues and Autism

Food Issues for Independent Autistic Adults

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

By Patricia E. Clark

Narrative



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.

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.
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Understanding Adult Autism

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
    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
    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
    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
    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
    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
    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
    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
    (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
    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!
    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
    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
    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
    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?
    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
    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
    (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?
    (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
    (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
    (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
    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
    I welcome email from visitors. I also hope that you will learn about other online places I like to visit.
__________________
ADHD.... It's not just for kids anymore...
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The computer lets you make more mistakes faster, with the exception of tequila and a handgun. (M. Radcliffe)
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Autism and Labeling

Functioning labels

From AspiesForFreedom

There are many controversies about functioning labels in the autism spectrum. The 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.

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ASD Defined

What is a High Functioning Autistic Disorder?

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



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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: 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.
  • Asperger's Syndrome: 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;
  • Attention Deficit Hyperactivity Disorder: 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;
  • Semantic Pragmatic Disorder: 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!.
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, 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.

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 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.

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 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).
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"Aye yam what aye yam." (Popeye)
"Sig personnas illegitum non carborundum." (unknown)
The computer lets you make more mistakes faster, with the exception of tequila and a handgun. (M. Radcliffe)
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