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.

While writing my most recent post, I found myself back 2 1/2 years to something I wrote on the subject of the genetic nature of autism. The following quote from the article I was discussing is quite likely the source of my opinion, expressed in The genetic basis of … everything (Or: Maybe we are all autistic), that the “autism spectrum” isn’t restricted to those with an autism diagnosis (emphasis is mine):

Autism is not a “you have it or you don’t” disorder, Todd said. Instead, it is a highly inheritable continuum of traits, much like height or high blood pressure. The cutoff for being tall or short or having high or low blood pressure is somewhat arbitrary, he said. So is the diagnosis of autism. The measure of autism is usually the inability to cope in the real world, said NYU’s Hollander.

“People can be different without having a pathology,” Hollander said. “It’s only a disorder if it causes stress or interferes with function.”

Reminiscent of a comment from Laurentius Rex on a recent post.

Something to consider.

As far as I know, all of the arguments about the increase in autism diagnoses being too rapid to be purely genetic are based on an assumption of randomness in the process. From that perspective I must admit that it seems unlikely that you could explain the increase in autism diagnoses purely to genetics.

But is this really a random process?

This thought occurred to me yesterday when I heard a teaser for yesterday’s Talk of the Nation on NPR, on which they had a segment titled Genetically Engineering a ‘Perfect’ Baby. In the teaser, they played a quote from one of the guests in which he said something along the lines of:

We’ve been engaged in genetic engineering for hundreds, if not thousands, of years. It happens every night in bars and clubs and every where around the world, when men and women ’select’ the mate they want to help parent their child.

Which got me thinking: What if we (humans) have been engaged in a process of informal genetic engineering - maybe more appropriately referred to as selective breeding - over the past hundred years that has contributed to the increase in autism during that time, especially of the “high-functioning”, Asperger’s type of autism? I can hear many of you, even as I type this: What the hell are you talking about? And you can bet I’ve got my fire-suit on for all the flames that are sure to come my way. But I’m serious.

Consider this: Over the past 100 years or more, the engineers, scientists, mathematicians and other technically oriented people have become more important to the success and progress of our society. As these people’s importance has grown, so has their power and their desirability as a mate. As a result, these “geeks” have more opportunities to reproduce and further the survival of geek genes. When two geeks get together, especially if they are geeky in different ways, that is even more geekiness that passes down to their children.

Or, as a good friend once put it, “Geeks are breeding more now than they used to.” I apologize for the bluntness of the statement, or if it offends, but this is how she said it. (I’ve actually used that quote before, in an August 2005 post discussing the article Scientists begin to trace autism’s genetic roots in my hometown newspaper the St. Louis Post Dispatch.)

Does anyone know of any studies that address the non-randomness of mate selection and potential impact on genetic diversity, especially as it may relate to autism? I did a quick Google search, but didn’t really come up with much.

(Back on the subject of the Talk of the Nation segment, make sure you check it out. You can also join the conversation on the subject on their blog. Some very interesting comments so far.)

Maybe it’s because I’ve been around autism for so long now, but I can’t understand why anyone would find it so surprising that a possible “cause” of autism is a complex interaction of genes. Several recent stories (such as those documented by Kristina Chew and Mike Stanton) have made this point as if it is some new discovery. Granted, it may have only recently been scientifically validated, but this one seems to me to be common sense.

You might as well ask questions like, “What is the cause of introversion? Extroversion? Natural athletic ability?”

I can hear many people saying something along the lines of, “But those ‘conditions’ are normal.” Are they? I mean, in a statistical sense, are they really ‘normal’? I would say no.

If you look at the introvert/extrovert question, I would guess (yes, I’m guessing, no science here) the bell curve of this spectrum would have a few at either end and the rest (you guessed it) within two standard deviations of the mean. Same for athletic abilities.

If we look at autism in this way, as a spectrum across all people (and not just those we currently refer to as autistic), I propose that we might see something similar. On the left side of the bell curve, you would have those that are very non-autistic, the incredibly sociable communicative, etc etc. On the right side, you would have those that are very autistic (what we now simply call autistic). And in the middle, within two standard deviations, would be the vast majority of us showing our mix of autistic and non-autistic traits.

In a comment to Lisa Jo Rudy’s brief examination of some of the issues in the autism-vaccine debate, Dadvocate had this to say:

Rather, it is that some, in their zeal to promote public health may be erroneously accepting a level of adverse reaction risk that is too high (and possibly avoidable by reverting to a more conservative schedule)….

The obvious (to me) question from this is, “Given that the current vaccine schedule results in an unacceptably high risk of autism in vaccinated children, what level of risk is acceptable? If the current risk is 1-in-150 (which, I should note is actually the prevalence and not the odds of being autistic), what risk is acceptable? 1-in-500? 1-in-1000? 1-in 10,000? None?”

This question is really for those who believe that vaccines are to blame for autism, and is but one strand in a much more complex thread. Among other things, the risk of individuals becoming autistic would need to be weighed against the risk to the public at large of reducing vaccinations.

At the risk of retreading old ground, exactly where do you think the balancing point would be between protection of individuals from autism and protection of society from communicable diseases? (If you don’t think this is a valid question, by all means let me know. I’m interested in that possibility as well.)

On one side of the autism debate are those whose mission it is to eradicate autism, remove it from the face of the earth. Which got me thinking, and brought the following questions to mind that I would like to ask those who would see autism disappear:

If autism could be cured, and if we, as a society, chose to cure it, what would the world be like? How would it impact our lives, and the lives of our children (and descendants many generations down the line)?  What would society look like 50 years from now?  100 years from now, when autism (or autism-like traits) had stopped influencing things?

If you can, I’d also like to know what you think would actually be removed from individuals and society by curing autism, in terms of behaviors, (dis-)abilities, etc.  In other words, what do you consider part of autism, and what do you consider just different enough to be not autistic?

Obviously, I’m also interested to hear what those who don’t share this goal think would happen if autism were to be completely removed from the human condition. Is this something that we would, or should, want? Or would this be a case of, “be careful what you ask for, you just might get it”?

Last week I asked the question: What would it take to change your mind? I figured I should probably think of an answer for myself, this post includes some thoughts from my contemplation. This is not a complete argument for or against anything that I haven’t already stated, just some thoughts in process. Any thoughts of yours are certainly welcome.
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I don’t believe that autism is mercury poisoning, I’ve said that before. As for the number / types of vaccines being a trigger (I don’t believe it is a cause in the Newtonian sense), I’ve been thinking about it lately but haven’t seen any data to help me make a my mind.

Along those lines, the Age of Autism (which is, I must note, very openly of the opinion that mercury in the form of thimerosol in vaccines and/or the number of vaccines given to kids is the primary cause of most autism) yesterday pointed to the 2008 pediatrics vaccination schedules (0-6 years and 6 years and over).

WOW!!

That was about all I could think when I looked at the schedule. The schedule in and of itself doesn’t lead me to believe anything different than what I knew before, but it does give me an extra data point. The human immune system is an incredible, incredibly intelligent, incredibly complex system. (Though I’m sure there are many books specifically on the subject, The Genius Within includes a very description of how the process works.)

The challenge with a complex system (as opposed to a merely complicated system) is that the outcome of any given input to the system can not be predicted and that a specific cause for a measured outcome cannot be identified. From Dave Snowden (who thinks about complexity a lot):

• Complex systems can not be predicted, they are non-causal (taking cause in its normal Newtonian sense) in nature they evolve and the same thing will not happen again twice, we can predict aspects of the system and different aspects of time but never the outcome of the whole system
• The concept of a non-causal system is a very difficult one to grasp as the west abandoned the idea at the time of the Enlightenment (Vico and others were prophetic in arguing against this).
• A complex system can be simulated - which increases understanding but simulation should not (although it is often) confused with prediction
• We can understand starting conditions as a complex system evolves and we can influence their evolution if we focus on barriers and attractors (1st and 2nd order constraints) but not if we look at the end point (so attempting to predict makes things worse not better)
• Humans tend to premature convergence (seeing a pattern too quickly before it is stable) and also to retrospective coherence (implying past causality where there was none). Both of these tendencies are pervasive and dangerous

Which brings me to a very interesting dilemma:

• If autism (has a cause and) is indeed caused by an insult to the immune system, we can not predict which vaccine or combination of vaccines will cause it; and,
• Once autism is caused in an individual we can not look back through their vaccination history to determine which vaccine it was that did the causing.

And this doesn’t even bring into play the complexity of the interaction between the immune system and the rest of the body or the role of genetics, and genetic predisposition.
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