A Touch of Alyricism

Dedicated to the equally fascinating topics of autistic advocacy and the 'sisterly sophistries' of radical gender feminism. Other topics may occasionally crop up. Contactable at alyric@gmail.com

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Polemicist since Grade 8

Wednesday, August 03, 2005

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.

20 Comments:

Blogger Clay said...

Well written, Alyric. Thanks.

10:11 PM  
Blogger Autism Diva said...

Alyric,

Speaking as a mere Diva to a true maven - good show!

Mille mercis!

AD

12:41 AM  
Blogger JP said...

From the California DDS caseload statistics (I do agree with autism diva that they're unreliable for the tracking of autism INCIDENCE, and have said so myself on my blog) but the fascinating thing when looking at the June 2005 caseload report:

http://www.dds.ca.gov/FactsStats/pdf/June05_Quarterly.pdf

You'll notice on page 34 that over 60 percent of those with an autism code have NO mental retardation, over 80 percent live at home and 95 percent have no "special health care requirements".

From those numbers, is it reasonable to assume that most of the people in the DDS with an autism code are NOT an enormous "drain on the system"?

8:00 AM  
Blogger Phil Schwarz said...

Eloquent, Al.
Thanks, mate :-)

-- Phil from Up Over

10:13 AM  
Blogger Kev said...

Nice post - I linked you up :o)

4:08 PM  
Blogger NancyGail said...

I'm just curious, alyric, do you have AS? I do. I call myself autistic because I KNOW better to tell someone I have autism. That brings forth a distinctive set of mannerisms which have a rather bad habit of evoking pity. Which is insulting. My college degree and IQ prove that I am perfectly capable of fitting into society just fine.

11:38 AM  
Blogger Ed in Colorado said...

An autism epidemic would mean that there has to be something other than genetics that caused it. The cause would have to fit the geography and the time of the epidemic. We can't implicate vaccines, so of course there can't be an epidemic.
But for the rest of us who go into any given elementary school of 250 children and expect to see at least one child who fits the classic definition of autism, there is an epidemic.
You need to get out a little more, Alyric.

8:07 PM  
Blogger Rev Dr John Benjamin Tatum DD PhD said...

This comment has been removed by the author.

6:35 PM  
Blogger Rev Dr John Benjamin Tatum DD PhD said...

As an Aspie, who also has two doctorate degrees (a DD in Theology, and a Ph.D. in Counseling), I think about things too much.

IF the 1 in 166 number (or the new 1 in 150 number) is true, then it has to be one of two things. It could be that there is better diagnosis (I was misdiagnosed as being hyperactive as a child, I was just "bored" as being an Aspie in a NeuroTypical world).

There was also a large number of "atypical schizophrenia" in children in the past, now that is being diagnosed as being an ASD.

If we round it up to 1 in 200, I have not seen that many Autism Cousins out there to meet that. I do not know WHERE they are. I am from California. Autism Speaks and the CDC came up with the 1 in 166 number out of "thin air" because I do not see that many people on the Autism Spectrum. I live in a town of roughly 50,000 since October of 1996 (lived in a town of over 1.5 million before October of 1996). So where are the 301 people on the Autism Spectrum here in my town of 50,000
people? I took 50,000 and divided it by 166... that is where I came up with the 301. Now lets look at the new number of 1 in 150, that means there are the 333 1/3 people that are on the Spectrum? I may have Asperger's Syndrome, but I think I am good at telling the Autism Cousins from the NeuroTypicals, so where are all these ASD people? This is 2007, so I am sure they are not all being hidden in people's homes. I am from California and did not see those numbers around me even in a larger population. Here in Northcentral, Ohio... I see NOTHING. So I think that both the CDC and Autism Speaks (who does not speak for me), are working on their degrees in Bovine Scatology, because that seems to be the area of study that such numbers are coming from.

For what it is worth,

Rev. Dr. John Benjamin Tatum, D.D., Ph.D.

An Aspie and proud of it !!!!!!

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