Saturday, May 1, 2010

Autism and Intellectual Disability

Since Harold Doherty can't seem to stop repeating, ad nauseam, his self-constructed statistic about autism and intellectual disability, I thought I would counter with a real story about autism and intellectual disability, one involving some actual facts and one requiring a little more thought and attention than needed for just making up numbers or repeating the made-up numbers of others. This is a story about my own son.

Although I don't think our part of the country is typically included in the biennial CDC autism prevalence reports, if it were, this is the year from which Brian's records would be examined and tallied towards the total—he turns eight in a few months and thus he is part of the 2002 birth cohort to be counted as of 2010. And if Brian's records were to be included as part of that study, they would show him falling under the following two categories: Autistic Disorder and intellectual disability. In other words, in Mr. Doherty's narrow-minded view of the situation, Brian would officially qualify as one of the more dire autism cases—the cases Mr. Doherty wants everyone to focus on exclusively. So let's do just that. Let's focus on Brian's case.

Both those categorizations—Autistic Disorder and intellectual disability—result from the occasion of Brian's official diagnosis, received shortly after his fourth birthday. They are essentially the only evidence in Brian's records that the CDC would have to go on. When receiving his official diagnosis, Brian was given a thorough battery of tests, enough to extend over the course of two days, with the cognitive tests being given near the end of the second day. My wife was actually present with Brian as he was administered those tests, because someone was needed to help keep him seated and to help keep him focused long enough to be given the questions. Thus she was in a perfect position to report on how the entire episode turned out to be something of an unmitigated disaster.

There were several less-than-stellar moments, but the most telling incident came when the examiner asked Brian to count out loud from 1 to 10, to which Brian replied with complete silence and a little more squirming in his chair. After a brief period of time, the examiner repeated the question, to which Brian answered with still more silence and still more squirming, until finally the examiner noted the result on her chart and moved on to the next question. Needless to say, given this and several similar exchanges, Brian's overall cognitive score turned out to be significantly low.

But here's the thing:

This boy, who among other inabilities was being marked as unable to count from 1 to 10 at four years of age, was also the same boy who had been regularly entertaining himself from around the time of his third birthday by counting backwards from 100 to 1—cheerfully, voluntarily, and without mistake.

Like many autistic children, Brian does not like to sit still for very long, and he does not like to be barraged with an endless stream of questions. Even today, I would be hesitant to predict his performance on an IQ exam, because I'm not sure he would have enough patience to sit all the way through it. But I can tell you this much: anyone who has spent more than an hour with him would laugh hysterically at the notion of him being classified as intellectually disabled. He now reads at the third grade level. He does multiple-digit addition and subtraction. He is eerily adept at logic and probability puzzles. Plus he can talk up a linguistic storm as long as the subject is one that intrigues him (Disney and ceiling fans, for instance, would currently net you at least a ten-minute monologue). There has never been any doubt for those who actually know Brian: he may be highly atypical, but he is also highly intelligent.

Of course, the CDC will never know that.

Administering cognitive tests to any child under the age of about eight is a dubious procedure, but it becomes especially doubtful when applied to autistic children. There are many reasons autistic children will perform poorly and erratically on intelligence tests, with a good number of those reasons having nothing to do with the child's actual level of cognitive skill. If we are going to accumulate valid statistics on the relative intelligence of the autistic population, then the first thing we must do is focus on tests administered at older ages—exactly the opposite of what is currently being done.

And there are other factors to consider. For instance, as Michelle Dawson and her colleagues have been demonstrating, autistic individuals tend to evince a different kind of intelligence than do non-autistic individuals, an intelligence that often leaves behind an erratic trail across the range of standard cognitive tests, but an intelligence which nonetheless remains highly correlated to the types of cognitive skills often valued within the current culture. If we continue to compare autistic intelligence only to the norm, then we are going to continue to overlook many of the more valuable cognitive contributions autistic individuals have to make.

On the other hand, I don't want to be entirely pollyannish about the situation either. Clearly, there are also a significant number of autistic individuals who do experience various kinds and degrees of cognitive difficulty—difficulties that can often extend throughout a lifetime. The reasons for this phenomenon remain poorly understood and are a genuine cause for concern; and indeed, when one surveys the entire landscape of autism and intellectual ability—both the promises and the problems—what emerges is an extremely complex and puzzling picture. Autistic intelligence is different; it is also highly variable. Autistic intelligence is full of intriguing possibilities; it also gives rise to a surfeit of unanswered questions. Whatever else one might say about autism and intelligence, at the very least one must admit that these are fertile grounds for further study and exploration.

And in the end, I think that is what bothers me the most about Mr. Doherty's repetitive fictions. That he makes up his numbers and passes along the concocted platitudes of others—well, that is something I can deal with, because those activities simply mark Mr. Doherty as another nondescript member of the autism advocacy throng. But the facileness—that is what I found so hard to swallow. It can be only pure cognitive laziness that would prompt Mr. Doherty to fabricate statistics, thereby obscuring a wealth of valuable and potentially helpful information about autism and intelligence. And in my opinion, it is that cognitive laziness that needs to be classified as autism's true intellectual disability.


Socrates said...

This study lead by the eye-wateringly lovely Rosa Hoekstra suggests that ID and Autism have independent causes.

And as for the UK's figures, which ever way you look at it, you must keep in mind the fact that the IQ cut-off for Learning Disability services here is IQ <69.

There is a very powerful incentive for doctors to assess Autistics as having a low IQ.

As for Harold's propaganda - Evil isn't too strong a word.

Clay said...

I've been reading Harold Doltery for years, usually his ignorant comments here and there, I seldom go to his blog. I predict that he'll keep up his nonsense for another 4 years, until shortly after he places Conor in a residential setting somewhere, and then he will turn silent - out of guilt.

David said...

An association between autism and retardation, at a rate of ca. 75%, is a claim from within orthodox psychology, which appears to have fallen out of favor. I rejected this statistic as soon as I ran across it, simply because I recognized it was fully comparable to scores from IQ tests of immigrants who did not speak English.

A joke I have that I think could apply to your son's case. It has one scientist saying to another, "The one thing we've learned so far is that rats really don't like having electrodes stuck in their brains."

Astrid said...

Thanks for this post, and Thanks David for the clarification. Until I read your comment, I reluctantly swallowed the 75% statistic cause my college neuropsych book said it (but it also estimates autism prevalence at a few per 10,000, go figure). I appreciate y our clarification.