In his book Unstrange Minds: Remapping the World of Autism
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.
no straight lines 
A very relevant question. I have a relative who may very well have been diagnosed if he were a child today. I do wonder if he would have gone to MIT, gotten a PhD in Computer Linguistics, etc., if he had been labeled at an early age. I don’t want to be anti-diagnosis, but at the same time I think the connotation of hopelessness which often accompanies ASD dx actually may inhibit future growth. I wasn’t diagnosed until I was almost 18, and in a way I’m glad that I wasn’t diagnosed earlier. There were problems, of course, but at least I was being challenged and had high expectations to live up to. I’m now a college student at a good liberal arts college. I’ve had some serious problems with living in a dorm like a “normal” student–but I’m also a top student academically. I may have a lot to learn in terms of “life skills,” but I’m glad that I’m able to develop my strengths as well as my weaknesses. If I were in a more sheltered environment, like going to community college at home or a program such as the “College Living Experience,” I very much doubt that I’d be applying to PhD programs next year. An ASD diagnosis should not be seen as a life sentence, nor should “treatment” involve squashing all areas of difference.
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Brett wrote:
“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?”
The probable answer is not much and I don’t think this has ever been looked at directly. While reading the ‘myth of the first three years’, one of the points that seemed to emerge is that the effects of interventions including the bad ones may be very transient – they tend to disappear by puberty. What happened with Carly Fleischman seems to bear that out. Years of underestimating what she could do (by ‘trained’ therapists) had no lasting effect. They may have delayed it a bit but they couldn’t stop it. Though Michelle Dawson relates that back in 1985, a well known behaviorist, Epstein did manage to extinguish a savant ability. So, maybe it’s possible but usually not and these days, because of all the natural environment teaching, it might be harder to ruin autistic abilities.
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My son was diagnosed late (originally severe moved down to moderate on the spectrum)simply because we chose to accept him as he was and until school age his differences were not impairments. When it became obvious he could not attend school without direct assistance, we sought a diagnosis to make that process easier.
I think the questions asked here are important to think about.
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It’s an interesting question, but you are only approaching it from one angle. You assume that the diagnosis going to lead to “fixing.” But it is also possible to see the diagnosis as an explanation that means less fixing and higher expectations. For example, many people expect higher cognitive function from people on the spectrum than the do from people with other developmental disabilities. What is more, patterns of behavior that may have led to exclusion from all sorts of activities in the past are more likely to be tolerated in someone with an ADS diagnosis. So, while it is possible that Fischer would not have become a champion had he been diagnosed, it it also possible that there were hundreds of undiagnosed people out there who lead undistinguished lives, but who might have become champions had only they been diagnosed.
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VAB: You are correct that I looked at this from one view point, and this was intentional. My intention was to get people to think first about what a diagnosis means, and secondly about what should be done with that diagnosis. The common theme among those who think that diagnosis is critical is that the “problem” needs to be fixed. By pointing out the potential changes to the person’s future, it is my hope that parents (and others) will think about the consequences of their actions on a diagnosis before simply going all-in for a “cure”.
I think that a diagnosis is important, if warranted, if for no other reason than to let the affected person understand why they are the way they are. It is then something they can use to help themselves as they shape their own future.
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