The Infamous 166

Among a large number of factoids circulating in cyberspace, the supposed ‘autism epidemic’ is particularly vexatious. According to the promoters of this factoid, the world is currently, and stealthily, being over-run with autism. Where at one time the prevalence of autism was 2 to 5 per 10, 000, it is now 1 in 166 persons. This is a social disaster, a tsunami of economic woe and something ought to be done about it before the world, or at least the Western world, crumples under the weight of having to support the millions of head banging, incontinent, non verbal, non communicative and profoundly retarded autistics for the rest of their long and expensive institutionalised lives. Right?

Not by a country mile.

It’s a con, a sham and a fraud of truly magnificent proportions played out by autism organisations of various stripes round the world. The wonder is that people are so credulous as to believe it. As far as I can tell, the touters of the 1:166 statistic lean heavily on total public ignorance of all things autistic except for the movie ‘Rainman’. Autism is not a monolithic entity. The tripartite autistic spectrum includes autistic disorder, Pervasive Developmental Disorder Not Otherwise Specified and Asperger’s Syndrome. Of importance, three quarters of that spectrum have no cognitive impairment, a point that these organisations fail to mention.

The fraud is played out here, in the terminology of the spectrum and in the stereotypy so prevalent in describing autistic disorder itself. Kanner, the first to give a name to a constellation of behaviours he labelled autism was not as pessimistic about the attributes of autism as these doom saying touters of the 1:166. He found plenty of talent is his initial group. Michelle Dawson describes the Szatmari et. al., follow-up study of a group of high functioning autistics which found, not unsurprisingly given that talent, that:

"Of the 16 autistics followed-up (ages 17-34; IQ 68-110), seven had university degrees (one was an MBA), and one was a community college graduate. This represents a higher percentage of university graduation than in the typical population.
38. Half of Dr Szatmari’s autistics were completely independent; six required minimal assistance (I would fall into this category); one required "moderate" supervision; only one, the youngest, required "constant" supervision. Most were working or were students. One was married. None was institutionalized."

The prevalence of autistic disorder according to pre-eminent autism epidemiologist, Dr Eric Fombonne, is around 13 per 10 000. He also estimates that about 40% of those carrying the label autism as distinct from other spectrum diagnoses have severe to profound mental retardation, which reduces the ‘help, it’s a trajedy’ rhetoric to about what the prevalence of autism was thought to be – around 2- 5 per 10,000. Even within that pessimistic scenario, there’s no guarantee that this group will inevitably require institutionalisation. Intelligence testing for those on the autistic spectrum, especially if the autistic is non-verbal, is abysmal and that’s when it’s not downright misleading in terms of predicting outcomes. As one autistic wit put it – learning to communicate can have your IQ shoot up one hundred points overnight. Throw in the fact that there are the likes of Stephen Spielberg and Dan Ackroyd with diagnoses of Asperger’s Syndrome, contributing to autistic prevalence and the touters of the 1:166 avalanche of the extremely dysfunctional have a serious credibility problem.

A question arises with this pervasive 1:166 rhetoric. Widely promoted by autism societies and the parents of autistic children, do they not care that in painting the spectrum as a devastating tsunami, a fate worse than death, a pestilence and so forth, the general public is getting a very negative view of the autistic spectrum and one guaranteed to have a deleterious effect on their autistic children’s future? There appear to be a number of factors at play here. Snake oil salesmen, whether of the chelation variety (autism=mercury poisoning) or the Lovaas Applied Behavioural Analysis camp (autism=a collection of unwanted behaviours), have a vested interest in painting the spectrum as black as possible. After all, they are in the business of selling a cure. In this, they are aided and abetted by parents who are easily persuaded that upping the pity factor as far as possible is the only way to prod Governments into funding $60, 000 a year ABA programs or persuading courts that they are entitled to a big payout from the pharmaceutical companies for causing their children’s autism, the latter theory not at all supported by the science. This agenda has had and continues to have some entirely predictable consequences.

Parents with ‘cure’ on their minds will seek at all costs to marginalise the very voices that might be the most useful in helping them understand their autistic children, namely autistic adults. Autistic adults pose problems for cure oriented parents on a number of fronts. Firstly, they aren’t cured and therefore it follows that listening to what they have to say must be a regressive step. There is an element of fear of contamination in this thinking. Secondly their presence, if acknowledged, would also mean acknowledging that there must have been autistic children who progressed without benefit of either chelation or ABA, which doesn’t add to the sales pitch. Additionally, it is harder to maintain the image of impending doom of catastrophic proportion if your electorate, so to speak, is articulate enough to object to your prognostications.
The cure at all costs factions have been remarkably consistent in their reaction to outspoken autistic adults. Professor James Mulick said of Michelle Dawson:

"These are arguably characteristics of a person with a psychiatric disorder, but that disorder is not autism or even “on the spectrum”.

This was over the fall out from Dawson’s ‘The Misbehaviour of Behaviourists’. Kit Weintraub, also chipped in:

"Dawson appears to be so vastly different than most people I know with autism, that she cannot and should not pretend to understand what it's like to be them, much less have the audacity to speak for them."

Lenny Schafer, editor of the Schafer Autism Report (aka the Lenny Letter), is on a one man crusade (SAR 8 April 2005) to have autism maintain its definitional purity:

"Yet, why do some people with Asperger's call themselves "autistic"? Is this a dysphemistic attempt to make Asperger's appear to be as serious as autism, or is it just slang?."

The consensus from these folks is that articulate ≠ autistic.

Now here’s the curious thing. Mr Schafer et al have objected on multiple occasions to the opinions of articulate autistic folk, including those who are autistic spectrum in that they have a diagnosis of Asperger’s Syndrome. At the same time he and assorted like minds proclaim the doom statistic - autism affects 1:166 persons, which of course includes all those upstart articulate autistic and Asperger’s folk. Schafer et al cannot have it both ways. Either Asperger’s and articulate adult autistics really are autistic and entitled both to the label and to authentic views on autism or Mr Schafer had better embrace the 1960s definition of autism together with its prevalence, 2 to 5 per 10,000, a far cry from 1:166.