31 July 2007

Was Einstein autistic? Does it matter?

When I started reading Walter Isaacson's new biography of Albert Einstein, one of the first things I did was look in the index to see if autism or Asperger's was listed. No on both counts.

As I've read the book, I've found myself unconsciously evaluating the information presented through a diagnostic lens, trying to decide if he was indeed autistic. (See this Google search for a lot of discussion about the topic.)

I'll post my thoughts on the matter after I've finished the book and had the chance to digest it all, but in the meantime the following question came to mind:

Does it really matter if Einstein were autistic or not?
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30 July 2007

Autism dads and IEPs

Last summer in the post "Men must attend IEP meetings", I quoted Charles Fox of the Special Education Law Blog on the important role men can (should) play in the IEP process. With the beginning of the school year and IEP season looming, I felt it appropriate to reprint Fox's quote:

Fathers and men too often fail to realize that sometimes just showing up at a meeting in support of the child can make an enormous difference. In my list of essential advocacy points, I list that 'men must attend meetings.' [number 11] I was actually accused of being a male chauvinist for stating this position at a parent training.

What was lost in translation was not that women are incompetent advocates because nothing could be more untrue; rather, that the dynamic of the meeting can often go differently if the father, uncle, grandfather, brother or even male co-worker or friend comes to a meeting or mediation.
This post was brought back to mind for me by the blog post Gender Bias and Autism Dads at About.com:Autism -
Have you ever been treated like a second-rate member of an IEP or school meeting? Of course, right? But how about a second-rate parent? Have you ever had to say, “Umm, I’m here too” or “Hey, I’m also the parent” when the faculty (in my case, all or predominately female) ignore you completely and speak to the other parent without acknowledging your existence. Or even worse, have you ever endured the cruel “Dad” jokes, when these so-called professionals assume the mother does all of the dirty work (cooking, cleaning, shopping, taking care of the child, therapies, researching, fighting school districts, etc.) while you escape to the normalcy of your 9-5?
Fortunately, I've never had to endure this. The IEP teams we've worked with over the years have all been true professionals, treating us as equals in the process. If anything, most were pleased to see a father taking such an interest. (Of course, it has helped that through the years I've had jobs that gave me the flexibility to attend.)

To be honest, I've had a more difficult time trying to be an involved father in the PTO's of my non-autistic son. I seem to be the only father that the mothers had ever seen express an interest in being part of the PTO. This made for some interesting, sometimes uncomfortable initial meetings as they tried to figure me out. (It took me a while in one group to get them to stop calling me Mr. Miller!) Eventually, I became just one of the gals (in a manner of speaking ;-) ).

I know that, statistically speaking, mothers tend to be the primary care givers and the ones who must work through the IEP process and all that it entails. I also know that divorce rates among parents of autistic children are high, again with mothers typically (not always) the ones who must take care of the autistic child. *

But I'm here to tell you - and I know a few guys out there who will back me up - that autism dads are here, and we care, and we'll let our IEP teams know that we're here and we care if they try to ignore or marginalize us.

* On the subject of autism divorce, check out First National Program Launched to Combat Divorce Rates in Autism Community in Medical News Today and the Family First page on the NAA site.
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27 July 2007

Canaries in the coal mine

If you ask Dr. Bryan Jepson he will tell you why he thinks the "new" autism is different from the "old". As a medical doctor (now a Director of Medical Services) and parent of a young autistic son, Jepson has been doing some research lately and has come up with some (not always so) new ideas. Here are some excerpts from a story in the Deseret News (Utah) about Jepson and his new book Changing the Course of Autism: A Scientific Approach for Parents and Physicians:

Soon he was convinced that autism is a complex metabolic disease that has as much to do with the gut as it does with the brain.

It's an epidemic, he says, "and there's no such thing as a genetic epidemic."

At the same time, the "new autism" is less likely to show up within the first six months or year of a baby's life, and is much more likely to be "regressive," showing up at 18 months to 3 years to rob the child of previous skills — sometimes almost overnight, sometimes as a gradual decline.

There's a genetic susceptibility for autism. But something else has to explain the sudden rise in numbers — and it's not simply a matter of better diagnosis or a broader definition of what autism means, he says.

The answer appears to have something to do with the increased toxicity of the environment, he says, from food additives to vaccines and antibiotics. Children who are born with a genetic susceptibility for autism have trouble detoxifying, he says.

The increase in other chronic diseases such as asthma is evidence that autistic children may also be proof of what's to come, he says. "It's kind of like the canary in the coal mine." (my emphasis)
I know a lot of parents have turned to diet as a treatment for autism, but I don't know how many of them take it as far as Jepson does:
Calling autism a behavioral disorder, says Jepson, is like calling a tumor a headache. Instead, he says, autism is just one symptom of a disease process that affects the digestive, immune and neurological systems.

The majority of children with autism have gastrointestinal problems, sometimes causing severe pain. Their tantrums and head banging may be a manifestation of pain they can't articulate, Jepson says. If the gut disease is treated — with diet, nutritional supplements and medication — that behavior goes away.
The benefits of changing diet and the question of whether stomach issues are a cause of autism or simply a co-morbidity have been discussed ad nauseum over the past several years in the blogosphere, as well as other books addressing. The reviewers on Amazon seem to love it (7 reviewers, average rating of 5 stars), but I wonder if they really found it that good or if it was just something that justified an opinion they already had.

I'd be interested to know (without having to read it, my list is already too long), if this book brings anything truly new to the debate. (Aside, of course, from the obvious belief that autism is a symptom of something else and not a condition of its own.)

26 July 2007

Asperger's and video games

This is a slightly modified version of a post I made to my blog No Straight Lines.

I use SiteMeter on this and other sites to track visits (look in the bottom of the right column if you’ve missed it). It is interesting to see how many people visit the site, and where they come from (all over the world), but what fascinates me the most is the referrer log. I get the odd link from someone else’s blog or other site, but the vast majority of referrals to this blog come from search engine queries.

It is interesting to see what search terms people use that find my sites. Even more interesting are the other sites that those search terms turn up. For instance, a search for “video games and autism and gee” returned a link to my blog No Straight Lines, but also a link to Gaming and Students with Asperger’s Syndrome: A Literature Review:

As a teacher in the field of middle years education, I have observed a continual rising interest in video and online gaming by many of my students, regardless of gender and academic ability. In the past few years, I encountered students playing an online game set in a virtual environment (VE) called Runescape. My interest was especially piqued when I noticed students with special needs, especially those with Asperger’s Syndrome(AS) playing the game and exhibiting positive social and cognitive skills that he would rarely demonstrate in a traditional classroom environment. Students with AS were discussing the game with other classmates (and myself) in and outside the classroom. They were asking how to spell words and utilize a calculator in order to achieve objectives within the game. They were problem solving and surfing the web for online discussion groups associated with the game.

In this literature review, I will seek to answer the following questions: What educational learning principles and concepts are associated with online gaming? How do these aspects of gaming benefit students with AS? In turn, I will present a review of the latest research on the issues related to education and gaming, present an overall framework of the game Runescape, discuss some of the defining characteristics of AS, then explore how certain aspects of gaming benefit students with AS.

A nice pulling together of several of my areas of interest. The Lit Review itself is well worth a read, and the bibliography provides even more.