Autism: Ignoring the Obvious
I just don’t see room for reasonable people to disagree on this. There has been an explosion in the incidence of autism among American children since the late 1980s, yet one analyst after another continues to posit the increase is only apparent, the result of better diagnosis and awareness. That makes no sense at all. The CDC now estimates that between 2 and 6 children in a thousand have the disorder, which occurs on a spectrum that ranges from the comparatively mild Asperger’s Syndrome to severe communication and social dysfunction accompanied by immunological and digestive problems. My guess is most kindergarten teachers would say the true rate is higher.
With current best practice any hope for recovery requires very intensive intervention and it has to begin early, preferably before age three or even sooner. Many cases aren’t diagnosed until children start school. Most with autism face a life long disability. Many will eventually be institutionalized. There’s the rub. If autism had been around all along and just misdiagnosed there would be large numbers of adults with autism in the population. There aren’t. Most people with autism are under age 21. None of the researchers claiming the increase isn’t real have looked at rates among adults. Anything short of that lacks credibility.
It’s an important issue because it clouds efforts to understand the cause. If there has been no increase the factors may be purely genetic. There are obvious genetic links. If there has been an increase there must be some environmental insult involved, a factor that must itself have become more prevalent. The question is politically charged because the most obvious environmental change is a dramatic increase in childhood vaccinations. Nobody wants vaccines to be the problem.
In the three and one half years since my grandson was diagnosed with autism I have followed the discussion with more than passing interest. A consensus is emerging but it is frustratingly slow. Many reputable scientists now concede the increase is real and there must be an environmental cause. That is new. They no longer dismiss out of hand the notion that vaccines may be involved, though few would suggest the program be seriously curtailed as some parents have. They agree that more research is needed, and not just in genetics. Some of it is self serving. A pattern of intransigence among scientists at the CDC and the NIH emerged a couple of years ago and produced a level of outrage they weren’t prepared for. It got to the point where congress was threatening to fund independent inquiries and relieve them of their oversight responsibilities. There is still some skepticism about whether the official agencies can be objective. They can’t afford to lose the public trust and it is in everyone’s best interest that they retain it. They will have to tread carefully.
There are still those who blame it all on genes. About every three months I see an article reporting a new team of researchers has found the culprit. If they have there are either a lot of offending genes, or there is a shocking lack of communication in the community. A Cambridge professor named Simon Baron-Cohen gets a lot of play for his assortative mating theory. His contention is that social misfits are more likely to have children with autism and in the computer age they are more likely to marry. I call it the geek-gets-lucky theory. The New York Times and many other august publications have given him prominent coverage. Go figure. But we’re getting there. We are going to find out what’s causing this.
With current best practice any hope for recovery requires very intensive intervention and it has to begin early, preferably before age three or even sooner. Many cases aren’t diagnosed until children start school. Most with autism face a life long disability. Many will eventually be institutionalized. There’s the rub. If autism had been around all along and just misdiagnosed there would be large numbers of adults with autism in the population. There aren’t. Most people with autism are under age 21. None of the researchers claiming the increase isn’t real have looked at rates among adults. Anything short of that lacks credibility.
It’s an important issue because it clouds efforts to understand the cause. If there has been no increase the factors may be purely genetic. There are obvious genetic links. If there has been an increase there must be some environmental insult involved, a factor that must itself have become more prevalent. The question is politically charged because the most obvious environmental change is a dramatic increase in childhood vaccinations. Nobody wants vaccines to be the problem.
In the three and one half years since my grandson was diagnosed with autism I have followed the discussion with more than passing interest. A consensus is emerging but it is frustratingly slow. Many reputable scientists now concede the increase is real and there must be an environmental cause. That is new. They no longer dismiss out of hand the notion that vaccines may be involved, though few would suggest the program be seriously curtailed as some parents have. They agree that more research is needed, and not just in genetics. Some of it is self serving. A pattern of intransigence among scientists at the CDC and the NIH emerged a couple of years ago and produced a level of outrage they weren’t prepared for. It got to the point where congress was threatening to fund independent inquiries and relieve them of their oversight responsibilities. There is still some skepticism about whether the official agencies can be objective. They can’t afford to lose the public trust and it is in everyone’s best interest that they retain it. They will have to tread carefully.
There are still those who blame it all on genes. About every three months I see an article reporting a new team of researchers has found the culprit. If they have there are either a lot of offending genes, or there is a shocking lack of communication in the community. A Cambridge professor named Simon Baron-Cohen gets a lot of play for his assortative mating theory. His contention is that social misfits are more likely to have children with autism and in the computer age they are more likely to marry. I call it the geek-gets-lucky theory. The New York Times and many other august publications have given him prominent coverage. Go figure. But we’re getting there. We are going to find out what’s causing this.
posted by Onfoot at 10:59 AM
2 Comments:
I'm not sure that it's really quite fair to call Baron-Cohen's theory "geeks get lucky". It's based rather more deeply than that. That there is a "male brain" type and a female one, and that autism is an expression of the extreme male brain type.
There's a great deal more at this blog:
http://www.eqsq.com/theory.php
What he has done is to show that there is at least a correlation between his theory and the real world (and as always, correlation is not the same as causality). For example, he did a paper on the incidence of autism in the extended families of students in engineering courses and arts courses at Cambridge. As the underlying theory would suggest (which has nothing to do with male or female, BTW, but with brain types) the incidence was much higher in the families of those with the male type brains, the engineers and the scientists.
As to the increase since the 80s: you do know that the diagnosis of "autism" was widened in 1980? from what we might call "classical autism" to the whole autistic spectrum?
BTW, Baron Cohen has a DVD out now, to help autistic children learn the emotional awareness they often lack. No, I'm not selling it, so I'll let you look for it yourself (narrated by Stephen Fry).
Finally, all of the above does not rule out there being an environmental cause as well: I personally think it dubious but then my personal opinion isn't science. Nor was what Anthony Wakefield was talking about either.
You can put lipstick on Barron-Cohen's theory but it's still a bull dog. Everybody knows more boys than girls have autism and that it runs in families. There is obviously a genetic link and the Y chromosone is a prime suspect. But saying male and female brain types have nothing to do with male and female is absurd. People have suggested this theory explains the high incidence of autism in Silicon Valley (two geeks marry and the poor kids don't have a chance.) To say that is offensive is putting it mildly.
It has even been proposed that Barron-Cohen combined with modern air travel explains the increase. Everybody knows Englishmen are eccentric right? But Brazilian women can't tell the difference between simply English and genuinely strange, so are willing to marry an odd ball who would be shunned in England. How bizzare is that? People have been trying to blame autism on the parents since the "refrigerator mothers" of the 1940s. Apparently they have no shame. Barron-Cohen's ideas are fair game for ridicule. I'll pass on the DVD.
There are some really good programs out there though for helping children with autism (You do know that "autistic children" is politically incorrect? Don't ask me why.) to develop emotional awareness. Dr. Stanley Greenspan's is the most intriguing one I have seen. I'm not selling that either but his book is well worth the read.
The broadened-definition-of-autism explanation for the increase in incidence leaves out the all important question. Where are all the adults with autism? They should be easy to find if they are there. They aren't.
Thanks for reading this, and for thinking seriously about autism.
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