Where are the Adults with Autism?
One of the many controversies surrounding autism spectrum disorder (ASD) is whether it represents an epidemic. The CDC created a furor a couple of years ago when it estimated that 6 in every 1000 American children now have ASD, a dramatic increase over fifteen years earlier. A firestorm of criticism followed with ASD advocates demanding a national emergency be declared and massive research projects funded. Childhood vaccine defenders who don’t want any such research pointing fingers at their program responded just as vigorously to contest the estimate. Challengers maintain that not only is the CDC’s estimate inflated; there has been no real increase in the rate. The apparent rise is due to increased awareness. Many children who a few years ago would have been diagnosed with something else are now being diagnosed with ASD. This week health headlines are filled with reports of a new study which at least partly supports the latter view. The CDC had already bowed to pressure and hedged. It now says the number is somewhere between 2 and 6 in every 1000 children. The author of the new study, Dr. Paul Shattuck, used Department of Education data to reach his conclusion but cautions that the data are inconsistent. He also notes the “diagnostic substitution” hypothesis has been examined and rejected by a number of other scientific studies. The water just gets murkier.
This shouldn’t be that hard. There are two schools of thought about the nature of ASD. One is that it is a lifelong incurable disorder. The other is that with the right intervention, begun early enough, a child can be moved up the spectrum to the point where she no longer exhibits the clinical symptoms to be classified as having the disorder. Those who accept the idea that ASD can be effectively treated concede that very few children get the sort of intensive care required to move them completely off the spectrum. Until very recently that sort of success was practically unheard of. Assuming there are four million children born in the United States every year there should be somewhere between 8000 and 24000 ten year olds with ASD. We really ought to be able to find them and count them, or at least get the estimate to a more reasonable range. Which is it? The difference represents an astounding financial impact on school districts alone. Let’s assume for the sake of argument that the rate has been relatively constant over the years. That would mean there are a comparable number of thirty year old men and women with ASD, many of them institutionalized by now since there was so little effective treatment available when they were children. We ought to be able to find and count them too, if they are there.
I don’t think they are there. I don’t think they were in the schools twenty years ago. The idea that the typical teacher in the 1980s would not have noticed a pattern in these children is hard to accept. The numbers are too large and the characteristic behaviors too evident. I suspect if you asked a long time teacher he would agree. If they weren’t in school where were they? Where are they now? Several hundred thousand adults with autism would represent a very large percentage of the nation’s institutionalized population. These places are staffed with professionals. If they were seeing large numbers of patients with ASD they would notice and be saying something. We hear about an adult with autism occasionally but not with the frequency we might expect. They just aren’t there.
This shouldn’t be that hard. There are two schools of thought about the nature of ASD. One is that it is a lifelong incurable disorder. The other is that with the right intervention, begun early enough, a child can be moved up the spectrum to the point where she no longer exhibits the clinical symptoms to be classified as having the disorder. Those who accept the idea that ASD can be effectively treated concede that very few children get the sort of intensive care required to move them completely off the spectrum. Until very recently that sort of success was practically unheard of. Assuming there are four million children born in the United States every year there should be somewhere between 8000 and 24000 ten year olds with ASD. We really ought to be able to find them and count them, or at least get the estimate to a more reasonable range. Which is it? The difference represents an astounding financial impact on school districts alone. Let’s assume for the sake of argument that the rate has been relatively constant over the years. That would mean there are a comparable number of thirty year old men and women with ASD, many of them institutionalized by now since there was so little effective treatment available when they were children. We ought to be able to find and count them too, if they are there.
I don’t think they are there. I don’t think they were in the schools twenty years ago. The idea that the typical teacher in the 1980s would not have noticed a pattern in these children is hard to accept. The numbers are too large and the characteristic behaviors too evident. I suspect if you asked a long time teacher he would agree. If they weren’t in school where were they? Where are they now? Several hundred thousand adults with autism would represent a very large percentage of the nation’s institutionalized population. These places are staffed with professionals. If they were seeing large numbers of patients with ASD they would notice and be saying something. We hear about an adult with autism occasionally but not with the frequency we might expect. They just aren’t there.
posted by Onfoot at 11:09 AM
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