29 Marbles

In his book Unstrange Minds: Remapping the World of Autism, author Roy Richard Grinker mentions chess legend Bobby Fischer (p. 63) as someone who may have been an undiagnosed autistic. I’ve just started reading David Edmonds’ book Bobby Fischer Goes to War: How A Lone American Star Defeated the Soviet Chess Machine (P.S.), and have to say that I was thinking the same thing. (For more discussion on the subject check out the Bobby Fischer talk page on Wikipedia.)

Which got me thinking: If Fischer were indeed autistic, how would his life - and the history of chess, among other things - have been different if he had been diagnosed when he was young? If he had been provided the treatment and services that are typically demanded today for Asperger’s diagnoses, would he have had the impact he did? Would he have been able to have that impact, or would that ability have been “treated” out of him?

You can extend this to any of the great minds that people sometimes say were probably autistic, like Newton, Einstein, Van Gogh. You could also look at those who have been diagnosed with Asperger’s as an adult and think back on how things may have been different, for them and their contributions, if they had been diagnosed younger.

There is no doubt (in my mind, anyway) that the increase in diagnoses of autism, especially Asperger’s, is due to a better understanding of what Asperger’s is and an increased desire of parents to understand why their kids are “different”. Many are being diagnosed now that might not have been diagnosed before, and demanding (and receiving) treatment they may not have received before.

I can’t help wondering what these individuals - and the world - may be missing out on because we want to catch and “fix” their differences early in life. We want to make life “easier” for these kids and their parents in the short term, but what is the impact to the long term? (This is kind of a different take on my earlier question, “What would a world without autism look like?“)

(Just to be clear, I’m not advocating not diagnosing children - or adults - if a diagnosis is warranted. I’m just asking the question because I think the answers, even if only hypothetical, can give us some insight into why we think the way we do about autism and why we do the things we do about autism.)

UPDATE: As I finished writing this, I saw Your Advice Requested: Next Steps for a Teen Diagnosed with Asperger Syndrome? over at About.com. The questions I’ve asked in this post were a hypothetical to get you thinking about what impact a diagnosis and subsequent treatment would have had on an undiagnosed autistic. If you’ve had a chance to consider those questions, your thoughts on them should help you come up with an answer to Lisa’s question.

This is kind of a follow-up to my most recent post. In responding to Some Asperger questions from the audience, John Elder Robinson Robison - author of the book Look Me in the Eye and a blog of the same name - takes on the cure question:

If there were ever a cure would you take it, or would you think it was like taking a piece away?At age 50, I am comfortable the way I am and I would not want to take any pieces away. As a teenager, though, life was a lot harder and I’d have had a different answer if you asked me this at age 15. I guess we become more comfortable with ourselves as we get older and hopefully wiser.

If you’ve read the book, you know that Robinson’s Robison’s life was anything but easy. Interesting, no doubt. But not easy, especially in a time when pretty much all kids - autistic or not - were left to sink or swim in the world.

(A side thought for a later post: Could the increased amount of time parents today spend with their kids, compared with previous generations, be a contributing factor to the increase in autism diagnoses?)

While wandering the aisles in the local Borders book store, I saw Donna Nakazawa’s new book, The Autoimmune Epidemic: Bodies Gone Haywire in a World out of Balance and the Cutting Edge Science that Promises Hope. This description is from the book’s official site:

Multiple sclerosis, lupus, Type 1 diabetes, rheumatoid arthritis, and nearly a hundred other chronic autoimmune illnesses are part of this devastating epidemic, in which the human body, acting on misread signals, literally begins to destroy itself. Alarmingly, the occurrence of many of these diseases has more than doubled in the last three decades, signaling a disturbing trend that can be directly tied to environmental factors in everyday modern life—including our daily exposure to a dizzying array of toxic chemicals.

With the conversation around a recent post fresh in my mind, I was drawn to the book to see what the author had to say about autism in the context of this autoimmune epidemic. There is one section, consisting of two pages, where she mentions the possible relationship of autoimmune issues, vaccines, and heavy metals (specifically mercury in the form of thimerosol) to autism. I don’t recall the specific wording, but she basically left it as, “We’ll have to wait and see what comes of the research.”

Has anyone had a chance to read this book yet? Any thoughts?

One of the various reasons I finally got around to posting my review of Portia Iverson’s Strange Son was my signing up for an account at Shelfari.com, a social networking site to connect those who still engage in the fading activity of reading. As I was adding books to my shelf I wanted to add a review of at least one book, so I dusted off that review and posted it to Shelfari, as well as here (where it would, admittedly, reach a bit larger audience).

One of the other things that Shelfari provides is the ability to create groups, what seem to me to essentially be a virtual book club. I created one, Books by Autism Parents and Autistics, to provide a forum to discuss, well, books by autism parents and autistics. So far, the group is just me. I’d love to have some company. (hint hint ;-)

On a side note, I understand that there are several different sites for managing a book shelf and that converting from one to another is a bit of a pain. I actually went through this when switching from iRead within Facebook to Shelfari. (I wrote a bit about the myriad options, and headaches they cause (for me, at least) in Time out, please? last summer.) If you don’t want to switch your entire shelf over to Shelfari, perhaps just come on over for the group discussion.

Hope to see you there.

I wrote the early drafts of this review several months ago, when I first read the book Strange Son. For various reasons, I never completed the review. And for various other reasons, I finally have. So, here it is.
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Although I’m glad that I read Strange Son, I can’t say that I ‘liked’ or ‘enjoyed’ it. On starting the book, I gained an almost instant dislike for Iverson, or at least the Portia Iverson depicted in the book, that made it nearly impossible for me to read more than a few pages at a time.

More than just a personal dislike, I found her attitudes towards other people, especially autistics and most especially her own autistic son, repugnant. I almost gave up trying to get through it several times (my wife stopped at page 26, it angered her so much), but I did eventually make it to the end.

Iverson, co-founder of the Cure Autism Now (CAN) foundation, and her son, Dov, are one of the two mother/son pairs of the title. The other mother and son are Soma and Tito Mukhopadyay. Iverson first learns of Tito while attending a conference she had organized for CAN, as she describes in the opening of the book:

“There’s a boy I think you should know about,” Francesca Happe began, gesturing for me to sit down. “His name is Tito.” The renowned psychologist from England, whose specialty was autism, continued: “He’s eleven years old and he lives in India. He’s quite autistic, but he can read and write and he’s very intelligent.”

She smiled at me and paused before going on, as if to gauge my reaction.

“Tito is a wonderful poet as well,” she continued. “He’s even published a book, an autobiography with some of his poetry in it.”

“And he’s autistic?” I asked in disbelief, thinking I must have misunderstood.

“Yes, he is definitely autistic. … There is only one Tito in this world, and no one else like him. He is his own disorder,” she replied with certainty.

I knew that no one had ever heard of such a severely autistic person being able to write and communicate independently. But wasn’t there even a remote chance that there could be others who looked and acted just like Tito but couldn’t communicate? At the very least, couldn’t Tito provide an extraordinary window into the most severe kind of autism?

The bulk of the book describes Iverson’s efforts to answer that question. The first step was to get the Mukhopadyay’s from India to the United States so that Iverson could have Tito studied by various medical, neurological, and behavioral experts. The book is replete with stories of Iverson taking the two around the country to be seen by various specialists, meeting with limited success at many. These little vignettes provide some interesting insight into what the medical profession apparently thinks (at least thought, since most of this happens from 1999 – 2003) about autism. And it is not pretty. “He can communicate? Then he’s not autistic” seems to have been a very common reaction, as was, “His mother must be somehow signalling him with what to type.”

Throughout the book, we (the reader) get to know Tito and his mother a bit.

In a nutshell, Soma changed her role as parent, from the ‘typical’ mother that acts as a guide for her child to dedicating herself to a mother working directly with her son to help him find his way in the world. She helped Tito understand the world around him, and helped him learn how to communicate – quite beautifully – through his writing.

Though the relationship becomes somewhat strained as time goes on, especially as Soma begins working more with other kids, the love between mother and son is evident and never in doubt, at least not in my mind. (Iverson’s depiction of how Soma treats Tito is reminiscent of how a person would treat a pet dog they were trying to tame; based on the rest of the book, I think this is probably more a reflection of Iverson’s attitudes towards autistics than it is an indictment against Soma.)

To me, Soma and Tito’s story was the most important of the book, the story that I really wanted to know more about. It was the story of a parent reaching out to her son, accepting him for who he was and working with that. Unfortunately, their story comes across as a sub-plot to the larger story of Iverson’s devotion to “finding treatment and a cure for autism.”

In many ways, Iverson’s description of her, and her husband’s, reaction during the period immediately preceding and following the autism diagnosis will be familiar to many parents of autistic children. Confusion (What is autism?). Guilt (What caused it? Could I have prevented it?). Despair (Can I cure it?). Embarrassment (I don’t want anyone to know. What will people think of me?) At this point, there are many paths a parent could follow. Soma followed one path with Tito; Iverson chose a very different path.

Where Soma changed her role as a parent and dedicated herself to Tito, Iverson essentially abandons her role as parent and dedicates herself, not to Dov, but to fixing Dov.

The events in the book take place in the late ‘90s and early ‘00s. Sadly, things probably haven’t changed much in the past few years. (I’ve hear that evidence of this can be found in Jenny McCarthy’s recent book about her autistic son, but I’ve not been able to get myself to read it.)

…not autistic, at least not in my mind. Alas, I do not have an answer of my own to offer to the question of “Does it matter?” If you were to press me, I would say that it doesn’t matter if it matters to me, it depends on whether or not it matters to you.

We all have our own point of view, and the answer to this question is - yes - relative to that point of view. Several people commented to my post Was Einstein autistic? Does it matter?. I encourage you to read those to get an idea of the answer from some diverse points of view (parents, autists, anonymous anti-autistic fundamentalists).

Was Einstein aloof? Yes. Emotionally distant? He could be, but wasn’t always. Obsessive? I’d say passionate.

In the comments to that previous post, Joseph questioned Einstein’s view toward his mentally ill son, Eduard. Here’s what Isaacson had to say:

Eduard was unable to keep his balance. He began cutting classes and staying in his room. As he grew more troubled, Einstein’s care and affection for him seemed to increase. There was a painful sweetness in his letters to his troubled son as he engaged with his ideas about psychology….

“Tete [Eduard's nickname] really has a lot of myself in him, but with him it seems more pronounced,” Einstein conceded to [his first wife] Maric. “He’s an interesting fellow, but things won’t be easy for him.”

It is true that Einstein did not see Eduard much as he grew older, and spent more and more time in institutions. As Isaacson puts it, Einstein “simply walled [Eduard] out when the relationship became too painful.”

Sounds pretty normal (god, I hate that word) to me.

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As a young Army officer, I read Sun Tzu’s Art of War many times (in different versions). When I transitioned into the civilian workforce, I realized that many of the ideas would translate to the world of business. (Not literally, of course. For example, Sun Tzu’s demonstration of leadership ability using the Emperor’s concubines as soldiers.)

The Art of War can also be applied to many other common activities, such as the IEP. You can pull from many quotes, but here is my favorite:

Know the enemy and know yourself; in a hundred battles you will never be in peril. When you are ignorant of the enemy, but know yourself, your chances of winning or losing are equal. If ignorant both of your enemy and yourself, you are certain in every battle to be in peril.

Of course, this may need some translation* into more relevant wording. Such as:

Know the district administration and their stated goals and resources, and know your rights and what is best for your child; in a hundred IEP meetings you will never fail to get what you need.

When you are ignorant of what the district’s goals or resources are, but know your rights and your child’s needs, your chances of getting what you need in the IEP are 50/50.

If you are ignorant of both the district’s goals/resources and your rights and needs of your child, you are certain in every IEP meeting to get what you get, and probably not what you really need.

Of course, this important piece of advice can just as easily be translated into the school district perspective, I’ll leave that exercise to you.

Based on my personal experience, conversations with other parents, and conversations in the blogosphere, my guess is that most people (from both sides) go into IEP meetings knowing themselves, but not their “enemy.” As a result, we often see winners and losers in the outcomes of IEPs, the result of hard fought battles that leave everyone bitter and exhausted.

What would happen if both sides heeded this advice and came in knowing themselves and the “enemy”? According to Sun Tzu, both should expect to win. But both sides can’t “win”, can they?

To that I answer a resounding, “Yes, of course both sides can win.” Wouldn’t that be a nice change?

* (If you are interested in some thoughts on translation within a language, check out my post Knowledge in Translation on my No Straight Lines blog.)
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