30 December 2005

Seems like a simple enough question

This question from David Kirby (as posted at the Huffington Post) pretty much sums it up:

Why is it so controversial to suggest that a known neurotoxin injected directly into the systems of pregnant women, newborns and infant children above federal safety levels MIGHT have caused a neurological disorder in a subset of children with a genetic predisposition against metabolizing mercury efficiently?

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13 December 2005

Mark your calendar for "Autism and Hope": Autism policy discussion from the Brookings Institution

The Brookings Institution is holding a conference entitled Autism and Hope this Friday 16 December from 2:00 - 6:00 pm.

The Brookings Institution, in conjunction with The Help Group of Los Angeles and with the additional support of the Karmazin Foundation, Autism Speaks, Cure Autism Now, and Michael Fux, will hold a conference to examine policy proposals for expanding the availability and affordability of early intervention for ASD. Drawing on a variety of expert opinions, the conference aims to illustrate that autism and hope are no longer mutually exclusive.
Register Online

For those unable to attend the conference, a live webcast will be available at www.brookings.edu.

A good background paper is also available to read (.pdf file) in preparation for the conference.

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10 December 2005

Focusing on the positive - New book for parents of autistic children

The new book A Parent's Guide to Asperger Syndrome and High-Functioning Autism: How to Meet the Challenges and Help Your Child Thrive is described as a "road map" to help parents with autistic/Asperger's kids. I just learned about it this morning from Ginger in Adventures in Autism: New Book for Parents New to ASD Diagnosis.

Though I've not yet read it, I do plan to. I've written before about the importance of working with our autistic kids' strengths, and this seems to be a key aspect of this book:

The book's guiding principle is to focus on a child's strengths, not weaknesses, and to have parents channel their child's unusual behaviors and ways of thinking into positive achievements.

'There are many examples of children with Asperger syndrome or high-functioning autism who grew up to be successful adults. The key was their being able to use their strengths,' said Dawson. 'There is a tendency to focus on children's problems so they don't get a chance to figure out how to use their strengths. These children have unique ways of learning so it is very important to identify a child's learning style. This can help them blossom rather than flounder.'

'Most parents are devastated and the impact on the family is great. Divorce is very common and other siblings sometimes can be neglected. But many parents rally and are able to start on this journey to find their child. They need to know this process is a distance race, not a sprint, and that eventually their child can lead an extremely satisfying and productive life.

'There is no reason why many people with Asperger syndrome and high-functioning autism can't get married, go to college, get a job and give to society. All are reasonable goals that can be reached, but usually with a lot of work,' she said.
The reviews on Amazon are all favorable so far, I'll let you know what I think once I've had a chance to read it.

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Art as insight into the autistic mind

Most parents of autistic children can remember the first time that there children "communicated" with them. Sometimes it is verbal, such as an unexpected - but highly hoped for - "Good night mommy." Sometimes it is in an action, sometimes it is in writing.

The story Portraits of a silent artist give insight into autism talks about one autistic child's use of art to communicate with the world and express what is going on in his mind:

Klar-Wolfond, whose 3-year-old son has been diagnosed with the condition, says many experts believe that autistic savants like Lerman are exhibiting inert talents, that their music or math skills are simply weird accidents of neurological wiring, bereft of reason or insights into their surroundings.

'Some people see this as a quirk of biology' she says, scanning Lerman's soulful artwork.

'They believe that people with autism lack a `theory of mind,' which means they have a very limited capacity to understand human emotions, they have no capacity to understand thoughts outside their own, can't read body language and are incapable of symbolic thought.'

Lerman's work — with its intensely emotive faces — belies this belief, Klar-Wolfond says.

'It shows that there's a lot going on, and that we have to rethink the way we interact with people with autism.'
One of the most recurring descriptions of autism is that autistic people lack a "theory of mind," that they have a limited understanding of the emotions of NT people and that they have no ability to understand thoughts outside their own.

I think, sometimes, that we who are NT have a serious lack of a theory of mind of the autistic. We project our understanding and pre-conceptions of how the mind should function on autistics, and when we don't see those manifested we assume that there is nothing, or very little, going on in those minds.

I don't think we could be more wrong.

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09 December 2005

Another interesting site: Asperger's Conversations

It never ceases to amaze me what you can find on the Web, in all areas of interest. Obviously in this blog, the information I find and discuss is related to autism. On that note I'd like to introduce you to Asperger's Conversations: Weekly audio posts by Larry Welkowitz, Ph.D.

I've not had a chance to go through it in detail, but one particularly interesting post to me was a discussion Dr. Welkowitz recorded with his class on the subject Counseling Asperger's and High Functioning Autism: Philosophical Dilemmas:

You be the judge, but I thought that these students (mostly educators, school counselors, and parents) were wary of models that pathologized children with AS/HFA and were moderately skeptical about the role of pharmacology. They were concerned about medication side effects and expressed concerns about superficial understanding of the complexity of these individuals.
I'm looking forward to going through the whole site in more detail.

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08 December 2005

No wheelchairs in heaven? What about autism?

Yesterday morning on NPR's Morning Edition, I heard Ben Mattlin's commentary Valuing Life Whether Disabled or Not (available in either Windows Media or Real Player format).

Commentator Ben Mattlin has been quadriplegic since birth. At the memorial service for a disabled friend who passed away, he came to realize the world needs to expand its definition of what it means to live a successful life, disability or not.
What caught my attention, and inspired the first part of the title of this post, were the last few sentences of the commentary:
Are there no wheelchairs in heaven? I'm not buying it. For me, if there is a heaven, it's not a place where I'll be able to walk. It's a place where it doesn't matter if you can't.
If there is indeed a heaven, and our autistic children go there when they die, will they still be autistic?

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28 November 2005

Who's reading your blog? Some thoughts on the (unfortunate) need for self-censorship

A key reason that blogging has become so popular is the fact that anyone can write about anything they feel passionately about and easily (and immediately) share it with the world. If you are writing about a hobby or some other such activity, this is great. You can share ideas, meet new people, learn new things. The rare few can even make money with blogs.

Of course, the downside of blogging (at least the public blogging that most people do) is that the whole world can see what you write. As Jakob Nielsenwrote in his Alert Box column Weblog Usability: The Top Ten Design Mistakes:

Whenever you post anything to the Internet -- whether on a weblog, in a discussion group, or even in an email -- think about how it will look to a hiring manager in ten years. Once stuff's out, it's archived, cached, and indexed in many services that you might never be aware of.

Years from now, someone might consider hiring you for a plum job and take the precaution of 'nooping you first. (Just taking a stab at what's next after Google. Rest assured: there will be some super-snooper service that'll dredge up anything about you that's ever been bitified.) What will they find in terms of naïvely puerile "analysis" or offendingly nasty flames published under your name?

Think twice before posting. If you don't want your future boss to read it, don't post.
For parents of autistic children writing about their experiences with autism, treatment methods, and working (dealing) with schools on IEPs and appropriate placement the paragraph could easily be re-written:
Whenever you post anything to the Internet -- whether on a weblog, in a discussion group, or even in an email -- think about how it will look to the special education and support staff at your school district. Once stuff's out, it's archived, cached, and indexed in many services that you might never be aware of.

Years (or months or weeks) from now, your district may be preparing for your IEP meeting and take the precaution of 'nooping you first. (Just taking a stab at what's next after Google. Rest assured: there will be some super-snooper service that'll dredge up anything about you that's ever been bitified.) What will they find in terms of naïvely puerile "analysis" or offendingly nasty flames published under your name?

Think twice before posting. If you don't want your school system and future teachers to read it, don't post.
In an ideal world, parents and teachers/staff could work together as partners with only the best interests of the kids in mind. Unfortunately, this ain't no ideal world. The stories of retribution from teachers and districts against parents that speak out against what they see as problems are too numerous - and sometimes too disturbing - to mention.

The result is that some parents choose to self-censor their posts so they don't address all the challenges and issues. As the parent of an autistic son, I've found an unbelievable amount of helpful information from other parents via the internet. Without it, we would have missed out on quite a bit early on. For parents with newly diagnosed children on the autism spectrum, the promise of the internet as a way of gaining information and support is in danger of being undermined because of the bad nature of some teachers.

And that's the thing, it is just some teachers. But like the old saying goes, one bad apple can ruin the bunch. When it comes to our kids, we have to weigh the potential good we can gain and spread with the ever present thought, "What if my teacher is a real ass about this?"

In the end, like everything else, it is a personal decision that we all have to make and live with.

(As a quick aside, retribution against kids for the words of parents is by no means limited to parents of autistic or other special needs kids. Through the years I've been appalled (shocked just isn't quite strong enough) at the behavior I've seen from teachers and administrators that have lashed out at kids because parents "got involved.")

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23 November 2005

Autistic Conjecture of the Day

If you've not yet seen it, I encourage you to check out Autistic Conjecture of the Day:

Dazed and amazed by the theories, research, and snake oil offered up as *THE* answer to autism - both its causation and cure? Well, so am I. On this, my little notebook in cyberspace, I will be collecting and publishing articles from both the past and present, dealing with autism from the medical, behaviorist, personal, naturopathic, and parenting points of view. May we all, in the midst of these multitudinous words, find what we need to move on with courage, strength, and dignity.
In a nice touch, Susan has categorized her posts into Legitimate and Illegitimate Conjectures. (Though I think it is safe to say that there will be some disagreement on which are legitimate and which are not.)

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22 November 2005

Professor’s talk details autistic life

Another "success story" of an adult Aspie at Western Front Online - Professor’s talk details autistic life.

Western adjunct anthropology professor Dawn Prince-Hughes, 41, was diagnosed with a form of autism called Asperger’s syndrome when she was 36 years old. In her book, titled Songs of the Gorilla Nation : My Journey Through Autism Prince-Hughes said Asperger’s syndrome is characterized by difficulties processing stimuli, sensory oversensitivities and challenges in social interaction.
One of the questions that comes up ocassionally for parents is, "Should I tell my autistic son/daughter that they are autistic?" Prince-Hughes description of what she felt when she found out points us in the right direction.
Prince-Hughes began learning about Asperger’s syndrome as an adult, after doctors diagnosed a young relative with Asperger’s. Prince-Hughes compiled detailed memories from her childhood and examples of her symptoms of the syndrome, then called a psychiatrist for a diagnosis when she was 36 years old.

The diagnosis had a major impact on her life, Prince-Hughes said. Rather than making her feel abnormal or separated from others, Prince-Hughes said it let her know she was not alone.

Just by knowing that I could put it in this box, my symptoms actually decreased overnight,” Prince-Hughes said.
The story as told in the article is compelling enough (dropped out of school at 15, spent the next 5 years homeless), I'm looking forward to reading the book.

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Thoughts from an Aspie CEO

In an interview about his company BitTorrent, CEO Bram Cohen had this to say about his Asperger's:

You've been open about being diagnosed with Asperger's syndrome. How has that affected you as a software author and as a CEO?
It makes you less emotional when you're coding. It's like you don't take it personally when the computer doesn't work well. I'm still relatively new to the CEO thing, so ask me that question in a couple years.

What's the biggest misconception about Asperger's?
That people with Asperger's are immoral, which isn't true at all. People with Asperger's frequently don't understand what's going on, and don't know how to express what they're thinking, but that's very different from not wanting to do the right thing.

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15 November 2005

Are all men "rain men"?

I came across the article Rain men: In every boy there is a bit of 'idiot savant' by Philip Beadle in the Education Guardian. Since I've written before about idiot savant, I was obviously interested. The impetus for the article is Nick Hornby's book Fever Pitch.

I didn't read Nick Hornby's Fever Pitch immediately it came out. I'm dimly aware, however, that it struck a chord with women. My closest female friend told me she'd found it to be a unique insight into the male psyche, before revealing, "I'd hate to be man. It must be awful."

Fever Pitch portrays males as hopeless creatures, all of whom are somewhere on the autistic spectrum. At the risk of reinforcing unhelpful gender stereotypes (and all women are merely a complex network of obsessions with flowers, make-up and shopping), I find it helpful, as a teacher, to remember it's the rarest of birds that sorts its record collection into chronological within alphabetical. I'll spell this out carefully for those in the back row: b-o-y-s a-n-d g-i-r-l-s a-r-e d-i-f-f-e-r-e-n-t.

We boys can be prone to monomaniacal obsession; to over-enjoying the repetition of surreal and meaningless nonsense. (On a four-hour car journey last weekend, my eight-year-old son and I ripped huge fissures into my wife's psyche through fevered and non-stop repetition of the word "bungalow".)
Beadle goes on to discuss some interesting experiments on the differences between men and women (boys and girls). The real take-away for me, though, is the last two paragraphs:
You can't reverse evolution in a 45- minute lesson. If boys do display characteristics associated with the spectrum of autism, there is one element of their propensity for obsession we should encourage. Autistic people have been recorded to have near super-human powers in specific areas: the story of the "idiot savant" who cannot relate well to other humans, but who is able to draw a technically accurate picture of Chartres cathedral from memory is well known. There is an argument that within each boy there is a bit of the "idiot savant". As an English teacher you are aware of nouns (idiot) being stolid, unchangeable labels and adjectives (savant) as fluid, therefore more optimistic.

With boys, our focus should be on celebrating and developing the adjective, rather than punishing the noun.
Not sure what my point is, or if I even have one this time. It was probably the reference to Hornby, whose books (and the movies that come from some of them) I've enjoyed. And who, by the way, has an autistic son.

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Thoughts on the Neurodiversity vs. Bio-med debate

Even though it was not about autism, when I first read the post below (with blanks filled in) I could not help thinking about how the debate between the Neurodiversity and Bio-med communities sometimes plays out.

There are incredibly intelligent discussions out there, most notably (at least in my aggregator) from Wade Rankin, Ginger, and Kevin Leitch. Just a quick glance at the comments to their more eloquent posts, however, will show that there are an incredible number of people who have no interest in learning anything from these posts (or, for that matter, anything that doesn’t support what they already believe).

How can you have a reasoned discourse if there is very little reason displayed?
- - -- --- ----- -------- -------------

Fill in the blanks. (For those of you familiar with the Neurodiversity vs. Biomed debate, it should be easy.)

To me, the most fascinating aspect of the debate over ___________ versus ____________ is that neither side understands the other side’s argument. Better yet, no one seems to understand their own side’s argument. But that doesn’t stop anyone from having a passionate opinion.

I’ve been doing lots of reading on the subject. I fully expected to validate my preconceived notion that the _________ had a mountain of credible evidence and the ___________ folks were kooks disguising themselves as scientists. That’s the way the media paints it. I had no reason to believe otherwise. The truth is a lot more interesting. Allow me to set you straight.

First of all, you’d be hard pressed to find a useful debate about ____________ and ____________, of the sort that you could use to form your own opinion. I can’t find one, and I’ve looked. What you have instead is each side misrepresenting the other’s position and then making a good argument for why the misrepresentation is wrong. (If you don’t believe me, just watch the comments I get to this post.)

To make things more complicated, both sides have good and bad arguments lumped into them. If you make a good argument on your side, I respond by attacking your bad argument instead. If it were a debate contest, both sides would lose.

The other problem for people like me is that the “good” arguments on both sides are too complicated for me to understand. My fallback position in situations like this has always been to trust the experts – the scientists – of which more than 90%+ are sure that __________ got it right.

The ____________ people have a not-so-kooky argument against the idea of trusting 90%+ of scientists.

I’d be surprised if 90%+ of scientists are wrong about _________. But if you think it’s impossible, you’ve lived a sheltered life.
(For the original context (completely unrelated to autism) of the above “analysis,” check out The Dilbert Blog.)

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14 November 2005

Planning for the future: reality check for parents of special needs kids

The article Adviser has plans for special needs children: South Florida Sun-Sentinel addresses an issue that all parents of special needs kids, who may never be able to care for themselves, should start looking at as soon as possible - financial planning.

The article highlights the efforts of Karen Greenberg:

Based on her experiences as the mother of 18-year-old Ricky, who has autism, she used her financial planning and accounting background to research ways parents can plan for the futures of their special needs children.

'In all my training, I hadn't come up with this particular situation -- where a family member would be dependent all of their life -- or never read anything about what to do with a disabled family member,' Greenberg said.

Financial advisers told her to leave everything to her daughter. But Greenberg said she wasn't happy with that advice and didn't want her son's care to be her daughter's burden.

'I started asking my peers at support groups and other places what they were doing about estate planning. I found most parents hadn't done any planning or they were afraid to make mistakes, so they did nothing,' she said. 'But they were interested in having me take a look at their plans. That's when I decided to make this into a not-for-profit organization, so I could help others.'

'The key is education. We teach them about the Special Needs Trust. We make sure their child is not named as beneficiary in their wills, life insurance or retirement accounts and that it goes to the trust. We encourage that the trust is set up while the parents are alive,' Vogel said.
I'm sure there is something similar available in other states. If anyone knows of any, please let me know.

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02 November 2005

Normal noise often painful to autistic kids, study finds

I don't think that any parent of an autistic child (or autistic kids/adults themselves) will be surprised by the findings of this study: Noise, even 'normal' noise, bothers a lot of autistic kids. What I found most interesting about the study results, at least as reported in this story in the NZ Herald, is the grouping of autistic and gifted children together in the study's findings.

The so-what of the findings is expressed very well by Stuart McLaren of Massey University in the wrap up to the story:

Providing quiet spaces is one way to help autistic and gifted children, and researchers will investigate other strategies.

'Much of the present work is focused on these children being integrated into regular early childhood education environments.

'However, we must look more closely at the learning environment too,' says Mr McLaren.

'Why is it acceptable to expect autistic children to negotiate their way around any such environment when we never expect children with physical disabilities to negotiate their way up a flight of steps?'

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01 November 2005

Augmentin and autism: A link?

Another potential cause/trigger for autism is identified in the paper Could one of the most widely prescribed antibiotics amoxicillin/clavulante "Augmentin" be a risk factor for autism? A press release on eMediaWire discusses the "overwhelming response from parents" (emphasis mine):

The author of the seminal paper: Could one of the most widely prescribed antibiotics amoxicillin/clavulanate “AUGMENTIN” be a risk factor for autism? published in Medical Hypotheses January 2005 (64, 312-315) has received thousands of emails, letters and phone calls from parents of children who experienced regressive autism following one or more dosages of Augmentin (amoxicillin/clavulanate).
From one perspective, it seems that the paper is showing that other environmental triggers can be responsible for autism. To me, unfortunately, the last sentence makes these parents look like they'll reach out for anything to blame for their kid's autism. I fear that the anti- bio-med groups will latch onto this to try to remove any serious debate about the topic, much as they are trying to do with the autism-thimerosol question.

Another interesting tidbit from the press release seems to be a linking of what some (Kevin Leitch, for example) consider comorbidities as actual causes of autism (again, the emphasis is mine):
In her paper, the author proposed a mechanism whereby children who received the antibiotic may develop autism as a result of the urea/ammonia toxicity in the gastrointestinal tract. She further links the introduction of augmentin in the early 1980’s for the use in children with otitis media, and the large numbers of children who have autism with protracted ear infections.
I've not had the chance to read the actual paper (actually, I've not been able to find a free full-text version), but here is the abstract from deep within the National Institutes of Health site:
Autism is an ever increasing problem in the United States. Characterized by multiple deficits in the areas of communication, development, and behavior; autistic children are found in every community in this country and abroad. Recent findings point to a significant increase in autism which can not be accounted for by means such as misclassification. The state of California recently reported a 273% increase in the number of cases between 1987 and 1998.

Many possible causes have been proposed which range from genetics to environment, with a combination of the two most likely. Since the introduction of clavulanate/amoxicillin in the 1980s there has been the increase in numbers of cases of autism. In this study 206 children under the age of three years with autism were screened by means of a detailed case history. A significant commonality was discerned and that being the level of chronic otitis media.

These children were found to have a mean number 9.96 bouts of otitis media (with a standard error of the mean of +/-1.83). This represents a sum total for all 206 children of 2052 bouts of otitis media. These children received a mean number of 12.04 courses of antibiotics (standard error of the mean of +/-.125). The sum total number of courses of antibiotics given to all 206 children was 2480. Of those 893 courses were Augmentin. with 362 of these Augmentin courses administered under the age of one year.

A proposed mechanism whereby the production of clavulanate may yield high levels of urea/ammonia in the child is presented. Further an examination of this mechanism needs to be undertaken to determine if a subset of children are at risk for neurotoxicity from the use of clavulanic acid in pharmaceutical preparations.
Also check out Do antibiotics cause autism?

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29 October 2005

Why doesn't every child have an IEP?

I was going to write a detailed post (rant) on this question, but on reflection I think the question speaks for itself....

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27 October 2005

A look at how journalist see, and cover, the thimerosol question

One of my favorite shows on National Public Radio is the WNYC produced On the Media, which covers how the media covers and treats the various news stories of the week. In this vein is an article from the Columbia Journalism Review, posted in its entirety at Ginger's Adventures in Autism, entitled Drug Test, by Daniel Schulman.

If you are at all interested in how/why the thimerosol issue is covered the way it is, you should read this article. If you're trying to find justification for either point of view, however, this is not the source you're looking for. While it does address the results and validity (or not) of various studies, this article itself passes no judgement either way.

The bottom line, at least what I got out of it, is that most reporters and news organizations are scared - yep, that's the right word - to even give space to the thimerosol question, much less report any supporting evidence in anything approaching a positive light.

A striking example from the recent news: As Pat Sullivan posted yesterday, USA Today had a story concerning the health benefits, and mercury risks, of eating fish. No where in the article is autism even mentioned.

Update: The article is also available on the Columbia Journalism Review site.

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19 October 2005

Vaccine-autism nexus denied (again)

The article Vaccine-autism nexus denied reports on the conclusions by the Cochrane Collaboration of a "scientific review of 31 select studies" into a connection between the MMR vaccine and autism (and other disorders):

'We found no evidence that giving MMR causes Crohn's disease and/or autism in the children that get the MMR,' said Tom Jefferson, one of the authors of The Cochrane review. 'That does not mean it doesn't cause it. It means we could find no evidence of it.'
The responses from the two sides were, as I think we have all come to expect, drawn along "party lines".
[PRO] At the same time, he said, 'We don't think there is any point in further investigating the association. ... The controversy should be put to bed.'

[CON] Many parents and advocates for children with autism have been reluctant to accept the conclusions of such studies, and advocates continue to call for more research.... 'It may be hard to prove that autism is caused by an injection, but all vaccinations have side effects, and the report can't ignore that,' said Debora Harris of the Elija Foundation, a nonprofit serving Long Island caregivers, parents and teachers of children with autism. 'I know a lot of parents who were holding their child in their arms a few days after the vaccination and seeing changes in their child.'
Obviously, the side that contends there is no link is happy with these results and will undoubtedly add it to their arsenal of justification. On the other hand, those who contend that there is a link will find ways to discredit this study, or the ones it is based on, and push for continued, valid research to find the link.

Barbara Loe Fisher, co-founder and president of the National Vaccine Information Center, probably says it best (as quoted in the story):
"This is not going to put the issue to rest," she said. "When the experience people have with vaccines is different from what the government and vaccine manufacturers are saying, you are not going to put this to rest."
It seems to me that there are two major challenges in, as Fisher puts it, putting this to rest - 1) designing a valid research program, and 2) implementing that program. I'm not sure which would be harder.

The Cochrane Review was imperfect / flawed (depending on which side you look at it from) in that it relied primarily on the results of epidemiological and retrospective studies and the comparison of the MMR vaccine with a single measles or rubella vaccine. The problem, as cited in the article, is the difficulty in finding a non-vaccinated control group for comparison. (Perhaps they could use the Amish?)

First things first: Has anyone developed a proposal for a research program that both sides could agree was a valid test of the connection between vaccines and autism? I've done a very cursory search, but haven't had time to really look into this.


A story from US News and World Report on this research provides even more insight into how poor studies of vaccines are:
There's no credible evidence behind the theory that autism is triggered by the measles-mumps-rubella (MMR) vaccine, scientists have concluded after reviewing 31 studies, many of which they found flawed by unreliable reports of outcomes, incomplete descriptions of the children studied, and other sources of possible bias. And those were the good studies–the researchers tossed out almost 5,000 others with even more blatant defects.

But possible defects contaminated so much of the research that the authors end their report with a scolding for the medical research community, saying that studies were so sloppy they could barely prove MMR vaccines prevented their targeted diseases–although, they are quick to point out, the fact that mass immunization has coincided with mass elimination of these diseases in many, many countries makes it hard to argue that vaccines don't work.
The hypocrisy of the last sentence amazes me. What would the reaction be, I wonder, if the sentence were just slightly reworded:
The fact that mass immunization has coincided with mass increase of autism in many, many countries makes it hard to argue that vaccines don't cause it.

15 October 2005

Sometimes, change is good

Change. If we are not in control of changes happening to us, change can be a frightening thing. Sometimes, our fears are realized. But sometimes change results in great things. And sometimes, whether we want it or not, ask for it or not, change is just "what the doctor ordered."

Following our recent move to St. Louis, things changed a lot (obviously). In addition to the obvious major changes, we've noticed numerous "minor" changes as we adapt to the new environment. Some of the biggest of these "minor" changes have been the result of the new school environments for our kids.

Tamar recently moved as well, in her case from CA to NJ. She has written an uplifting, yet somewhat tear-jerking, essay about the positive effects of changing schools for her autistic son.

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12 October 2005

Points on the spectrum

One of the biggest challenges in effectively treating any disorder is, of course, understanding the nature of the disorder. The challenges in treating autism are further exacerbated by the broad spectrum on which it presents. What works on one "end" of the spectrum may not work on the other.

Myomancy: Different Types of Autism: Complex and Essential pointed me to recent research (.pdf file) from Dr. Judith Miles and others at the University of Missouri (Columbia) Autism Center that defines two points on the spectrum - Complex Autism and Essential Autism. From the paper abstract [emphasis is mine]:

Heterogeneity within the autism diagnosis obscures the genetic basis of the disorder and impedes our ability to develop effective treatments. We found that by using two readily available tests, autism can be divided into two subgroups, ‘‘essential autism’’ and ‘‘complex autism,’’ with different outcomes and recurrence risks. Complex autism consists of individuals in whom there is evidence of some abnormality of early morphogenesis, manifested by either significant dysmorphology or microcephaly. The remainder have ‘‘essential autism.’’ Separating essential from complex autism should be the first diagnostic step for children with autism spectrum disorders as it allows better prognostication and counseling. Definition of more homogeneous populations should increase power of research analyses.
The paper goes into quite a bit of detail (including all the good statistical analysis ;-), and I'll be the first to admit I had to look up a few of the terms they use (my favorite - etiology), but it is very interesting reading. A lot to think about, and an extensive list of references to follow up with.

On a somewhat related note is Study: No vaccine, autism tie, a news story I found via Google News that discusses Dr. Miles' findings that there is no connection between vaccinations and autism in children (as I'm sure you gathered from the title of the story). According to the story, Dr. Miles is currently conducting research into the effects of thimerosol during pregnancy.
The study involved women with a certain condition who must receive Rh immune globulin shots during pregnancy. Those women are exposed to thimerosal since it is an ingredient in the injections they receive. "We conclude that there is no indication that pregnancies resulting in children with autism were more likely to be complicated by Rh immune globulin/thimerosal exposure," Miles said.

The article in the Rocky Mountain News I mentioned above was a bit light on details and left me curious about Dr. Miles' actual research on the subject. While a quick Google search didn't turn up anything on that front, I found an overview of autism written by Dr. Miles on Gene Tests, a "publicly funded medical genetics information resource developed for physicians, other healthcare providers, and researchers, available at no cost to all interested persons."

The overview is quite detailed, though it does give a broadbrush discussion of causes. All in all, though, worthwhile.

06 October 2005

If you're in St. Louis next Tuesday...

... the St. Louis County Special School District is conducting an Autism / Asperger Resource Fair:

Experts from SSD and organizations from around the state will provide guidance and materials on autism and Asperger syndrome. The fair will run from 3:30 to 7 p.m. on Tuesday, Oct. 11 at SSD Central Administrative Offices in rooms 60 and 61, 12110 Clayton Road, Town & Country.
I'm not sure exactly what they'll have, but it sounds like it is worth checking out.

05 October 2005

Support and services for autistic adults

Though it provides information specific to Massachussets, Students can 'age out' of special education provides a good general overview of the types of support and services available for autistic adults, as well as limitations to those services. As important, the article provides key advice for parents of autistic children approaching adulthood.

Some excerpts:

[S]pecial education for children is an entitlement program that provides services based on the child's needs. Cost cannot be used as a reason to deny special education services for children. In contrast, services for adults are based on funding that has been assigned by the state Legislature. Adult services are not automatically available. Multiple factors - such as the amount of money budgeted by the state, and the number of students turning 22 in a given year - affect the availability of services. (In some states, such as NJ, the financial status of the autistic person is also taken into account when determining eligibility for specific support and services.)

When a child approaches adulthood, long-term legal and financial planning should begin. In particular, parents need to consider whether full or partial guardianship is appropriate for their son or daughter. Also, each child should apply for federal benefits, such as Social Security. (It is important to keep in mind that, by default, when a child turns 18 years old they automatically become their own guardian. If you want to retain full or partial guardianship over your autistic child, you need to convince the courts that your child is not capable of being their own guardian.)

Parents should carefully consider the advisability of the student leaving school prior to age 22 because entitlement services end when the student leaves school. Moreover, the last two years in the school system can be invaluable, providing students with increased exposure to career development and work experience.
As with any kind of financial and future needs planning, it is probably never too early to start making a plan.

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03 October 2005

Helping each other "get it"

On my other blog I recently posted some thoughts on the book They just don't get it, a sort of business case-study of two "opposing" sides. Key to the resolution of the story in the book is the importance of seeing the question (and solution) from the "other" side. While reading the book, the neurodiversity vs. bio-med debate kept popping into my mind, especially with all the various back and forth lately.

If you've not already seen it, you really should visit Injecting Sense and read Semantics and Civility. Wade has put together an excellent synthesis of the many topics and ideas that have been floating around the past couple of weeks which I think goes a long way to helping frame this debate from all sides.

No one is right, no one is wrong, but there is a way ahead in which everyone comes out ahead.

Bringing out the big guns: MIT tackles autism

From MIT tackles autism | Science Blog:

With the help of a $7.5 million grant from the New York-based Simons Foundation founded by James and Marilyn Simons, MIT brain researchers are undertaking an ambitious multi-faceted approach to understanding the genetic, molecular and behavioral aspects of autism.

The projects are:

-Using new gene targeting, physiological and imaging techniques, the Sur team will develop tools for creating mouse and other animal models for autism and explore whether autism-related genes are involved in two key aspects of brain development and function in the cerebral cortex.

-Bear will look at mutations in the gene causing Fragile X syndrome, which shares similarities with autism. Bear's work indicates that by blocking a single brain chemical, many of the psychiatric and neurological disabilities associated with Fragile X and autism could be treated.

-Using state-of-the-art brain imaging techniques, Gabrieli will seek to understand how neurons play a role in autistic individuals' problems with social interaction and face recognition.

-Graybiel's team has cloned genes that may be related to autism or related disorders and will seek to understand the function of two molecules of a particular group. This information may lead to new mouse models.

-Sinha studies face processing ability in children with autism and is developing a methodology called VisTA (Visual Training and Assessment) to help them refine skills such as maintaining eye contact and reading facial expressions, body postures and gestures.

-Tonegawa's team will investigate the functional interaction between two genes that are implicated in both Fragile X syndrome and autism.

30 September 2005

Work to your kids' strengths

I found this bit of wisdom in the book Never Eat Alone by Keith Ferrazzi. Though geared at self improvement, this quote struck a chord with me as a parent:

The trick is not to work obsessively on the skills and talents you lack, but to focus and cultivate your strengths so that your weaknesses matter less.
The story of Tony DeBlois is an example of this in action. His mother recognized that Tony had serious weaknesses/disabilities to overcome, but also realized that his strength in music could make much of that weakness irrelevant.

I think all of our kids have their own strengths. Much of it may be hidden from us as parents*, or their strength may be something that we don't quite understand or appreciate as worth cultivating.

But it is by cultivating these strengths, in all of our kids (and ourselves), that we can help them be successful in whatever they ultimately decide to do.

- - -- --- -----
* Ferrazzi also gives this observation from Machiavelli: "Everyone sees what you appear to be, few really know what you are."

29 September 2005

What does it mean to cure autism?

Like most postings on Pat Sullivan's blog, Autism on Good Morning America really got me thinking. In this case, it was the last sentence that sent the wheels spinning (emphasis is Pat's):

Much like TREATING cancer, diabetes, etc., TREATING autism through ABA appears to be big business. CURING it however, yields little but vehement criticism.
What does it mean to "cure" something? From dictionary.com is the following (as cited from the American Heritage® Stedman's Medical Dictionary):
cure (kyr)
  1. Restoration of health;
    recovery from disease.
  2. A method or course of treatment used to restore health.
  3. An agent that restores health; a remedy.
The key seems to be "restore health." For physical ailments, the meaning of this is well known and understood.

But what does it mean in the context of a disorder that is diagnosed based on observation and behavior and is, at its most basic, simply a deviation from the societal norms of behavior and social interaction? Is "changing behavior to be normal" [God, I hate trying to find the right words cause that one just doesn't work] the same as "restoring health." It seems to me that yes, it is.

Of course, all this goes back to the question, "What is autism?" For if you don't really know what the disease is, how can you say you've cured it. Is it possible that there is more than one cause of autism? Are autism and mercury (or heavy-metal) poisoning different problems that just happen to present the same*? Is there only one cure, or can there be several?

If, as the transcript of the Good Morning America segment states, the boy is indistinguishable from his peers, isn't it fair to say the ABA treatment cured him of autism?

- - -- --- -----
* If you haven't already guessed it, this is kind of what I believe.

28 September 2005

Genius comes in many forms - A review of Some Kind of Genius

Recommendation: You should add this book to your must-read list.

I’ve long been fascinated by genius. Or, more specifically, the process of genius and figuring things out. My book shelves are full of these kind of books, mostly about scientists, mathematicians, and the like. This past weekend I finished Some Kind of Genius, which chronicles the musical achievements of Tony DeBlois from his first toy organ at the age of two and public performances at five that astounded the audience through his training at elite musical schools and his several CDs.

From an early age, Tony’s skill was apparent. He could quickly and easily play back anything he heard. He could even improvise and improve. As he got older and in more and more rigorous training, he could listen to his teacher and play back what they just played even as the teacher continued to play. He also has composed original tunes, played with several bands and organizations, and sings. As someone who dabbles at the piano and has a hard enough time just playing a single song, I consider this ability genius.

From the book is this description of 15 year-old Tony's audition at the Berklee College of Music in Boston:

Janice arrived with Tony at the audition and took him directly to the piano. The members of the committee stood around the piano, anxious to hear him play. Gathered for this audition with Lipman were Rob Rose, director of Berklee's special programs; Dave Weigert, chairman of the piano department; Paul Schmeling, of the piano faculty; Bob Doezema, guitarist/composer and assistant director of the summer program; and famed saxophonist-turned-educator John LaPorta, one of the legends of the school.

They had all sat in this space countless times before, listening to hopeful young musicians from all over the world. Berklee, the planet's top college of contemporary music since its founding in 1945, boasts an alumni list that is a veritable who's who of jazz, rock, electronic music, and other genres, and students know that getting accepted means they'll get the best training available in their field. Berklee alumni include composer/producer Quincy Jones, saxophonist Branford Marsalis, film composer Alan Silvestri, guitarist Al Di Meola, modern big band leader/composer Toshiko Akiyoshi, pianist Diana Krall, saxophonist Bill Evans, singer-songwriter Melissa Etheridge, members of Aerosmith, and many others.

Tony started the audition with a short classical sonatina, then moved on to one of his favorites, George Gershwin's "I Got Rhythm," complete with his improvised insertion of the Flintstones theme, which revealed his clever and original approach to the piece. Those brief moments were a revelation. The committee realized that they had a formidable talent on their hands, a rare, special boy whose playing contrasted sharply with the rest of his behavior.
Did I mention that Tony is blind? And autistic?

When I started reading Some Kind of Genius : The Extraordinary Journey of Musical Savant Tony DeBlois I was expecting (hoping?) to learn more about how Tony DeBlois' mind works, more about Savant Syndrome (which I've written about before). Indeed, there is some basic information about Savant Syndrome in general and discussion of Tony’s particular skills.

From Dr. Darold Treffert is this description of why savants may have the skills they have while the rest of us don’t:
I’ve come to believe in the collective unconscious not as psycological myths that are handed down by generations but as actual wiring, instinctual, which I call software installed. It’s clear that some of these prodigious savants are knowing things they cannot have learned. It had to come installed.

This level of memory may also explain why it appears that we come with tons of software installed that we don’t use. It’s not because we’re lazy but because it would cause the same situiation as when I try to use all my software on my computer at the same time – it would crash.

It’s almost as if some of these chips have a survival value to us if something happens to us. I think we tend to look at ourselves as being born with a tremendous piece of hardware, the brain, and a blank slate, and we become what we put on this disk. But I think savants come with this installed and they have access to it that we don’t.
As impressive as Tony's story is, though, for me the real story of Some Kind of Genius is that of Tony's mother Janice. From well before Tony's birth, Janice's life seems to have prepared her for the challenge, responsibility, and adventure of raising Tony and his brother Ray. And from the account she gives in the book, she more than lived up to the challenge.

For parents of an autistic, or blind or other "disabled," child this is a story of inspiration and what can be achieved if the desire is high enough. Almost all of us will see a little bit of our own story in Janice and Tony’s. The struggle to understand what is happening with your child. The desire to have the best life possible for your child, by figuring out what they are good at and helping them excel. And the fights with the system to make sure your child get what they need and deserve. It is also a story of sacrifice. All "special" parents know nothing is ever easy and getting what your child needs sometimes means sacrificing for yourself and possibly others, all too often leaving “casualties” along the way.

For everyone else, this is an inside look into what special needs kids and their parents must go through to get what is appropriate for them. My only complaint on this front is that Janice and co-author Antonia Felix almost make it seem too easy, too matter-of-fact. An “insider” will understand what was going on in the background of this story, but those unfamiliar with the struggle of “special” kids and parents will likely not quite catch it.

The most uplifting part of Tony’s story is his acceptance by the world of music. In almost every case (at least the ones documented in the book), the professional musicians and music educators that Tony works with see him as a musician first, a nice guy next, and only then as blind and autistic. This, I think, is the hope of all parents, special or otherwise: To help their children find their place in the world and make it their own.

ps. If anyone reading this happens to know Ellen DeGeneres, could you please pass on to her Tony’s desire to meet her and appear on her show?

The publisher offered the book as a complementary copy in hopes that I might mention it here.]

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21 September 2005

Should "autistic" be designated as a minority group?

An interesting article from Amy Nelson, PressBooth - Autism Spectrum Conditions a Social Minority Group raises a very interesting concept for thought and discussion. I have to admit, I'm not quite sure what I think of it.

Like all things surrounding autism, how an individual looks at this problem will depend a great deal on how that individual answers the question, "What is autism?" I'm going to have to think on this some more before posting any thoughts on it, but I figured I'd post this and see what others think.

13 September 2005

A "new generation" of autism treatment

This description of the Relationship Development Intervention ® (RDI®) program was on a press release for an upcoming conference, Going to the Heart of Autism, in San Diego:

The RDI program represents a new generation of autism treatment through which [Dr. Steve] Gutstein has worked to translate research findings into a systematic clinical approach to address the core problems faced by all individuals on the autism spectrum. It is different than "first generation" intervention programs because it is geared toward remediation. A primary assumption of the RDI program is that through focused guided participation in challenging activities, families can increase the flexibility and complexity of neural pathways of people with Autism Spectrum Disorder.

"The RDI program represents a completely new way of thinking about and treating the deficits that are common in all individuals on the autism spectrum," said Gutstein, co-director of the Connections Center. "We are challenging families and professionals to think beyond achieving mere functionality as a successful outcome for individuals with ASD; our reference point for success in the RDI program is fostering loving relationships and enhancing quality of life."

For $150 (or $125 if you register on the site and buy before 30 September), you can purchase the DVD Going to the Heart of Autism – The Relationship Development Intervention Program.

The DVD includes 30+ video clips of parents and families participating in RDI activities. An excellent tool to introduce and educate teachers, therapists, grandparents and friends to RDI. Topics are dynamically presented for a general audience, but would also be appropriate for someone on a post-doctorate level.

Anyone out there have any first hand knowledge or experience with this?

12 September 2005

Getting the Truth Out - a perspective on autism

Kev points to Getting the Truth Out, a site that he says provides a "much more realistic look at autism" than the recently relaunched Autism Society of America website.

Some thoughts on the site from Kev:

In places, for us parents, its not an easy read.

In other places it feels like we as parents have to accept that whilst we know our kids well we don’t know autism as well as autistics.

In still more places, this is a read full of hope and confirmation that difference is not equatable to bad or something that requires curing.
I've not had the chance to go through the whole site (it is set up as a linear pager turner and takes about an hour to go through, according to Kev), so I can't really comment on the site (yet). But it looks like it is definitely worth reading in detail as I try to figure out this thing called autism.

"I'm glad I'm not autistic..."

This was the reaction of a friend's autistic teenager as he watched the Autism Epidemic series that NBC broadcast last spring. How do you tell him that he is autistic?

As our autistic kids get older, it is one more thing we must all address (along with the birds and the bees and everything else that comes with growing up). But how best to do it?

Bonnie has some thoughts and suggestions at An Impression of Autism from a kid on the Autism Spectrum:

I personally do not believe in keeping the diagnosis a secret from family, school or the child. It is all about awareness and making the person with autism understand more about themselves to help them as they grow and become more independent. This all depends on the level of the child.
She recommends some books, from many perspectives, as well as some other ways in which to raise the issue.

The problem also applies to how we inform siblings about their brother's or sister's autism, and some of the resources Bonnie mentions address that as well.

Good stuff from someone who's gone through it.

Neurolearning Blog

On the recommendation of Zack at Brain Waves, I took a look at the Eide Neurolearning Blog. The blog covers a wide range of topics related to learning, specifically the different ways that different people learn. As you might expect, the blog also addresses some autism related topics.

The blog itself is a somewhat recent replacement for an e-mail newsletter that is a companion to the Eide's main website, Neurolearning.com. The Autism Archive addresses "theoretical" topics such as Visual Side of Autism Architecture of Empathy, Science of Autism Ill-Defined as well as more "practical" topics such as Autism Spectrum Disorders - Why Does it Take 10 Minutes to Diagnose? and Music Therapy for Autism.

The other topics are quite interesting as well and include Gifted & Creative Thinking, Learning Styles, Dyslexia, Mathematical Thinking, and Computers, Video Games, and Learning. I've just started going through the whole of the archives, but I like what I see so far. I think you'll like it, too.

09 September 2005

My first exposure to autism

The introduction to autism for most people comes in their pediatrician’s office when they hear those dreaded words. My first experience was a bit different.

As seniors (Class of ’82) at St. Louis University High School, a couple of friends and I were just starting on a three week community service project at the Judevine Center for Autism. Mike, Rich, and I walked through the doors, not really knowing what to expect. We stopped a member of the staff as she walked by so that we could introduce ourselves and find out where we should go. As we were talking a muscular young man, probably 14 or 15 years old, walked towards us wth a smile, apparently happy and in a good mood.

He then punched the woman we were talking with as hard as he could, right in the middle of her back, and turned and walked away.

“?!?” was the look on our faces as we looked around at each other. “What have we gotten ourselves into?” In this case, first impressions were not lasting impressions. It was an incredible experience.

Over the next three weeks we learned a great deal about autism, how it affects kids, and the people who dedicate themselves to helping these kids. The Center served (still does, actually) the entire PDD/Autism spectrum, from the low-end to the high-end. [I hesitate to use those descriptors after reading Form and Functioning: For Autistics, There’s No Truth in Advertising, but it is the best I could come up with for now.]

At first glance, some of the kids just looked like “normal” kids. After a little observation, though, it became obvious that these weren’t your typical kids. Not that this was bad. Once we got to know the kids, and they got to know us, most of them very quickly became just “different.” My experiences in middle and high school had prepared me quite well for “different.” [As a youngster I was labeled as “gifted” and placed in a school for “gifted” kids. Very few “normal” role models there! ;-]

But some of the kids were more than just different. These were the severely autistic kids. One stands out in my mind. He was 17 at the time. He had poor gross motor skills and non-existent fine motor skills. He could not talk, though he had a range of grunts and moans that could express a wide range of emotions, from anger and frustration to joy. (At least, this is how I interpreted them.) And occassionally, very occassionally, you could get some true interaction. Left on his own, this boy would bite himself, would thrash about, would bang his head so hard you could almost feel the walls shake.

The experience served me well 12 years later when I finally did hear those words from a pediatrician. We had known something was up, but hadn’t quite gotten to the point of saying the “A” word out loud. I know I was thinking it. But I was also thinking, “It could be worse. A lot worse.”

07 September 2005

Autism Watch: Your Scientific Guide to Autism

Searching through the web I found Autism Watch: Your Scientific Guide to Autism, edited by Dr. James Laidler (MD). Though it hasn't been updated since May 05, it has some interesting and informative links.

For an idea of Dr. Laidler's motivations, read My Involvement with Autism Quackery, which begins:

Ever since I began the Herculean (some might say Quixotic) task of exposing the quackery and pseudoscience surrounding autism, I have had people ask me, “Are you the same Jim Laidler who used to talk about chelation at autism conferences?” To them, the idea that I could once have been an impassioned supporter of the very thing I am now trying to debunk is hard to fathom. Well, everyone has something in their past that they are embarrassed about—and that is mine.

I consider myself to be a very scientific person. While growing up, I was skeptical and inquiring and naturally gravitated to the sciences. My first brushes with pseudoscience and quackery in medical school left me convinced that “it could never happen to me.” I was sure that my background and training would keep me from making the same mistake as “those people.” I was wrong.

A year or so after my son was diagnosed with autism, with no hope for cure in sight, I was feeling desperate for anything that might help him. My wife attended a conference about “biological treatments for autism.” She came back extremely excited, having heard story after story about “hopeless” cases of autism “cured” by a variety of simple treatments. I was initially skeptical, but my desperation soon got the better of me. We started out with the simple therapies—vitamins and minerals—but soon moved on to the “hard stuff': the gluten- and casein-free diet, secretin, and chelation. Some of it seemed to work—for a while—and that just spurred us to try the next therapy on the horizon. I was “hooked” on hope, which is more addictive and dangerous than any “street” drug. Meanwhile, my second son developed an autism-like disability at the age of 18 months.

What is autism?

No, really. What is it? I know what everyone says when you ask them the question. You can search Google and get a bunch of generic answers. But what, really, is autism?

Is it a result (symptom) of heavy metal toxicity? The overload of mercury in children as a result of childhood vaccinations.

Is it a different kind of mind?

What about all those other things associated with autism, what some call co-morbidities and some call symptoms of autism?

Will we ever know? Can we ever know? Does it matter? If we ever do find out what causes it, should we try to eradicate it? What if someone doesn't want to be cured? Whose decision is it?

If we can't/shouldn't cure autism, can we cure society?

< /stream-of-consciousness ramble>

Time waster - Nerd test

Not sure if this score is a good thing or not, considering what it is.

I am nerdier than 96% of all people. Are you nerdier? Click here to find out!

It does explain a lot, though ;-)

06 September 2005

Dan Olmsted's "Age of Autism" series

From Autism - A Parent's Perspective is a set of links to the complete Dan Olmsted's "Age of Autism" series. Nice to have all in one place.

Update (09/07/2005): One angry mom

Experiences with Special Ed: The Ugly

As bad as the whole of the Kindergarten year was, one incident stands out. Julie came to me one night and told me that Zeke’s teacher had called to talk about his behavior, his acting out in class. What it came down to was she was asking for Julie’s permission to strap Zeke down in his chair so he would sit still in class.

This was 1996, not even 10 years ago, and the teacher (with the concurrence of Zeke’s case worker in the district) wanted to STRAP MY CHILD DOWN IN HIS CHAIR. Julie, of course, said no. Here’s where it gets ugly.

Not long after Julie told me about this obscene request, I happened to be at the school. This teacher, who had already approached Julie and been turned down, told me that she would like to use physical restraints on Zeke. Did she tell me that she had already asked Julie, and that Julie had said no? What do you think? Needless to say, I also said no. (What I thought was, “Why don’t you let me strap you down in a chair!?”)

It wasn’t long after this that we requested the IEP update and got the placement Zeke needed.

Experiences with Special Ed: The Bad

Every day in various autism blogs and e-mail lists/groups are stories of people fighting the system, trying to get the best for their kids. This on top of learning to cope with the autism in general. As if parents of autistic children needed it, local school districts seem to feel compelled to provide additional challenges. For us, that was Zeke’s kindergarten year.

The “program” (if you could call it that) went under the name of Kindergarten for Neurologically Impaired (NI). This was a separate classroom in the regular neighbor elementary school. If I remember right there were 6 or 7 kids in the classroom, along with the teacher and an aide.

It didn’t take long before things went bad. Increasingly, Zeke was acting out in class. He was miserable in the mornings: he didn’t want to get on the bus to go to school. This had never happened before, so it obviously stressed us out. My job had me away from home more than I was there, so Julie was doubly stressed having to deal with this.

“What in the world is the problem?” we asked ourselves, because we’d not experienced this before. One trip to the classroom and all was revealed.

Zeke was hyperlexic. He has been able to read (decode) words since he was about 2 years old or so. The alphabet is old, old hat to him. So imagine my shock distress HORROR when I went in to observe one day and saw the following:

  • All of the kids and the teacher were sitting quietly around a table

  • They were going around the table, each kid taking a turn at sounding out every letter in the alphabet. It took some of the kids up to a minute to sound out a letter.

  • Zeke, 5 years old and bored, confused and getting very upset at the other kids inability to say the letters.

  • Zeke, acting out.

So we tried to explain a few things about Zeke that they obviously hadn’t figured out. To no avail.

Eventually, they put Zeke into a regular Kindergarten class. No aide. No support of any kind. The teacher was clueless, I don’t think she even knew what autism was. Zeke ended up being put at a desk isolated in a corner of the room so he wouldn’t disturb the other kids.

Fortunately, we had access to the internet and the various support forums available. One of the key ones we used was the American Hyperlexia Association. Through AHA, we found another parent at the Jersey Shore in similar circumstances. It was through her that we discovered School for Children, where we successfully petitioned to have Zeke place.

Experiences with Special Ed: The Good

I was in the Army when we first began to realize something was up. After taking Zeke to his pediatrictian, we were referred to a child study team in Kansas City (University of Kansas Medical School, I think). Following the study team diagnosis (I’ll discuss that more in another post), we received services from the local school district. Zeke was 3.

The staff in the district was very helpful and understanding. Zeke’s teacher was a new teacher, young and inexperienced. But what she lacked in experience she more than made up for in enthusiasm and a desired to figure out what made Zeke tick. We hated putting him on a school bus each day at such an early age, but it made a huge difference.

We also received in-home support services through the district/town. Key in this group was the speech therapist. (Karm, are you out there somewhere?) Unbelievable how good she was, and the impact she had. Not only did she help Zeke, she helped us to understand many things we hadn’t quite figured out. (Example: Zeke was hyperlexic, so he responded best to written vs. spoken language. Karm’s advice – put written labels on everything so Zeke would learn the words. BRILLIANT.)

The transition from the local district in Kansas to the new district in New Jersey was pretty smooth. Obviously, we had to figure out what services were available, what the differences in state laws were, etc. We were unfamiliar with the federal statutes, though if I remember correctly there was still a lot of growing pains in those.

The local district had a “pre-school handicapped” program that covered a fairly broad array of disabilities. The lead teacher in this classroom was very good. Like the pre-school teacher before her, she was very interested in Zeke as an individual. Zeke made good progress that year.

Following a nightmarish Kindergarten year (detailed in “The Bad” and “The Ugly” sections), Zeke began attending the School For Children at Monmouth University. We got the IEP worked out and Zeke began the first of eight wonderful years there. When reassignment time came around (I was still in the Army at this point), I resigned my commission so that Zeke could stay in the program. That should tell you how highly we thought of that program. (There is not enough room to go into all the good from those eight years here.)

After some serious research into the programs and services available for both Zeke and his NT brother Ian, this past summer we moved back to my original hometown of St. Louis. Within the St. Louis County School system is the Special School District, which includes programs very similar to the program Zeke was in at SFC.

Having learned from our last move that preparation would be important in any change of school district, we made the time to get to St. Louis last spring and meet some of the key people within SSD and at the schools we thought would be best for Zeke. When we finally moved to St. Louis and registered Zeke at the local high school, we had copies of his latest IEP, progress report, and his results from the NJ Grade Eight Proficiency Assement (GEPA) to give to the registrar. We also let her know that we were familiar with what was available in SSD and what we thought would be the best placement.

A meeting was scheduled, everyone was invited. Summer vacation was just winding down, staff was just getting back, and the school’s opening was delayed by several days due to storm damage. We weren’t able to convene the IEP team until the day after school started. (Yes, this is still part of “The Good”.) But when we met, everyone that needed to be there was there. The team members read his IEP, listened to our past experiences and future goals, talked a bit to Zeke, and (after a bit of translation from NJ to MO formatting) came up with a new IEP.

Zeke started school the very next day. He loves it so far.

Experiences with Special Education System

We’ve had over 10 years of experience with “special education” and other support services. This has ranged from pre-school now through the beginning of high school and has spanned three different states (Kansas, New Jersey, and Missouri). In the beginning, it was nerve wracking, trying to not only figure out autism but trying to figure out the “system.”

Taken as a whole, we’ve been successful in navigating the systems and getting what we felt was best. Now that Zeke is older, he is also participating and beginning to help us figure out what he thinks is best for him.

Along with the good stuff, however, there have been plenty of bad and, yes, ugly, experiences. Some of these were our “fault,” usually a lack of knowledge of what was possible. Some were a true miscommunication between us and whomever. Some (the ugly) were because of poorly trained people who had no desire (or maybe ability?) to learn anything new, much less how to help a child that didn’t quite fit the mold.

In order to avoid one single, long post, I’ve broken the story down into the Good, the Bad, and the Ugly. There is obviously a lot more to all the stories, I just want to give an idea of some things that can happen. I also want to let parents out there struggling with some of these same issues that it is possible to get good services for your autistic kids. It may take some work on your part, and you may have to go through some hell to get there, but perserverance will definitely pay off.

02 September 2005

Your point of view makes all the difference

In a comment to my recent post 10 things children with autism wish you knew, Kevin pointed me to the essay Why I dislike "person first" language by Jim Sinclair as a counter to the first of the 10 things. (Thanks Kevin for the link, there are several other pages at the site worth reading as well.) Here is that item from my original post, as well as the 3 main points of the essay:

  • I am a child with autism. I am not "autistic." My autism is one aspect of my total character. It does not define me as a person. Are you a person with thoughts, feelings and many talents, or are you just fat (overweight), myopic (wear glasses) or klutzy (uncoordinated, not good at sports)?
- - -- --- ----- --------
  • I am not a "person with autism." I am an autistic person. Saying "person with autism" suggests that:
    • the autism can be separated from the person
    • even if autism is part of the person, it isn't a very important part
    • autism is something bad--so bad that is isn't even consistent with being a person
This distinction of language has helped me focus something that has been nagging me around the edges about the whole neurodiversity vs. BioMed discussion here and elsewhere. Specifically, that the two arguments come from two completely different perspectives.

Most arguments from the neurodiversity camp (at least most that I’ve come across) seem to come from the point of view of autistics or Aspies themselves. These people are typically adults (or older teenagers) and are speaking out for themselves, proud of who they are and aware of their differences from the norm. Those that are parents also take this approach in raising their autistic children.

On the other hand, the staunchest advocates of BioMed approaches and the search for a cure seem to be the parents of young, recently diagnosed children with autism. These parents, for the most part, are not themselves autistic and are speaking out for what they believe is in the best interest of their child with autism. Though they will do what they need to in order to help their children live with their autism in the world, they still hope for a way to allow their children to function typically.

And you know what? I think both groups are absolutely right in what they are doing and saying. From the frame of reference they are living in, their actions are perfectly appropriate. In fact, I don’t think this is much different than how things work in the NT spectrum.

When kids are young, it is the parent’s job to make sure the children are healthy, that they are able to function in school, etc. Though it is nice to consider the child’s wishes, it doesn’t really matter what the kid thinks or wants. The parents are in control and will ultimately play a large part in how the child ends up. [Insert “nature” vs. “nurture” discussion here.]

As the kid gets older, he/she becomes more and more independent. The parents still exert some influence and control, but at some point the coin flips: It no longer matters what the parents think or want. At that point, the child has become an adult and can then take on the world on his or her own terms.

Either way, it is not my place to tell anyone else how they should be raising their kids nor theirs to tell me. Of course, it is always good to know options and perspectives other than my own to help me make the best decisions.

01 September 2005

Natural selection and the prevalence of autism – take 2

I’ve had a chance to read Origins of Autism and the work it is derived from, Human Evolution: Evolution and the Structure of Health and Disease.  In fact, I’ve read them twice; just to make sure I didn’t miss anything (though I’m sure I missed quite a bit).  

The bulk of the two articles address the theory/science/history of natural selection, sexual selection, and Lamarckian selection (or pangenesis) as espsoused by Charles Darwin, as well as a bit of cultural history of the human race.  The author, Andrew Lehman, then looks at autism and other related ‘disorders’ from those perspectives.  

[As a quick caveat:  I’ve not had a chance to check into the credentials of the authors of these papers or their citations in support of their work.  That’ll be the next step.  For now, I was really interested in their conclusions.]

The bottom line of the lengthy paper can be summarized in a couple of sentences:

  • Autism is “normal” in the right cultural context; it is just “wrong” for the cultural context we live in today, i.e. hierachical patriarchies.

  • The return (yes, the return) of autism is in large part due to the increased “agressiveness” of women in society and the transfer of control of procreation from men to women.


Yep, you read that last one right.  Here’s the paragraph from the paper (emphasis is mine):
Two cultural characteristics, female infanticide and several wives for a single husband, both behave as functions of sexual selection in a patriarchal culture, reinforcing sexual types. Remember, with fewer women procreating, the male furthest from the cultural ideal fails to have children, his genetics unable to continue. Now imagine a culture whose boundaries have broken down, where infanticide has ended, the selection for specific traits within a culture has ceased and women have the power to pick procreation partners using whatever criteria they choose. This is the world we live in. No one way is being preserved. All ways are open. For the first time culture is undefined and open ended. It is no coincidence that in the United States so much that is new has been and is being created. It is the first place in the world characterized by a complete breakdown of a specific cultural criteria for the ideal man. Women in contemporary western culture are choosing mates based on a new criteria [sic], their own idiosyncratic ideas based on the hodgepodge of cultures that comprise their background combined with the American ideal of independence. This new criteria is now becoming the cultural criteria, as women and culture together, form a new understanding of what they want in a mate. In our modern world, it is not the family or the male that chooses a mate, but the female. Only she decides who the father of her children will be. Women are no longer chosen exclusively for their tendency to cooperate with the ideals of patriarchal culture. The result: more and more higher testosterone women are having babies in modern culture. A wider and wider variety of males are presented with procreation opportunities, particularly the maturationally delayed males formerly often unable to find a mate in patriarchal culture. The return of the 'nerd', so to speak.
Here are a couple of other paragraphs that really stood out for me (again, the emphasis is mine):
For the last few thousand years males have been selecting the females least likely to stray and so provide them with male heirs. Males have been selecting females less likely to wield authority, females who are willing to cooperate with a patriarchal agenda. Females have been selecting males most likely to accumulate wealth, who can stay alive long enough to provide babies and provision a large brood in a relatively monogamous society. Revered features of the ideal male in a matrifocal society are disparaged by patriarchy. But it is these features, and the characteristics of the individuals that thrive in that kind of world, that is the world of the autistic child.Without constant exposure to the primary features of the matrifocal world, the neurological structure of a child organized physically, mentally, and emotionally to experience the world in that way will languish. Unceasing interactional music with highly evolved rhythms and constant touch with sophisticated dance are essential to a child inclined toward maturational delay. A diet familiar to the physiology of tens of thousands of years ago is appropriate for the facile functioning of that physical system. Their brains crave highly sophisticated pattern in sound and physical space. Their bodies crave protein, vegetables, fruits, nuts, natural oils, roots. How sad and ironic, that a brain created to perceive and appreciate subtle nuances in relationship in space and time, understimulated by a society relatively devoid of song and dance, and a diet characterized by wheat, dairy and other unfamiliar substances, ends up in relationship with itself only, unable to cross bridges to other human beings.
A lot to think about.  I’ll write more on this again, I’m sure.

30 August 2005

Natural selection and the prevalence of autism

I've always been interested in how the brain works and have read quite a bit on the subject of evolutionary psychology and biology and some on cognitive neuroscience. (Once Zeke was diagnosed as hyperlexic and PDD/ASD, I was really interested.) Reading through some of many posts on the neurodiversity vs. biomed debate, I've been thinking about the role of natural selection in the recent "explosion" of autism cases.

I figured before I wrote anything I should do a little research, lit review, etc. In my Google search, I came across Origins of Autism from 2003 and an earlier paper, Human Evolution: Evolution and the Structure of Health and Disease, from 1998. It's late and I've not had a chance to read through either of these in any detail, but they definitely look like they are worth reading.

I'm anxious to find out what their conclusions are.