Monday, October 30, 2006

A strategy to deny autistic lives

It was an historic occasion. Andy Scott's motion to create a National Autism Strategy for Canada was debated in the House of Commons last Friday, October 27. A record of this debate is here. It's a tribute to "autism advocacy" that all of Canada's political parties are determined to legislate an autistic-free Canada, the sooner the better. In fact, you can see the success of "autism advocacy" all over this historic debate, something I may try to get back to later.

For now, I'll concentrate on one of the greatest triumphs of Canada's leading "autism advocates". Here's Liberal MP Ruby Dhalla, taking her turn in the House of Commons' historic autism debate:

"Autism spectrum disorder is currently reaching epidemic levels. If we look 10 years back, statistics show that almost one in every 10,000 children was diagnosed with autism. However, in 2006 the statistics are quite shocking. One in 166 children is diagnosed with autism."

In other words, according to Ms Dhalla, there are very few autistics over the age of 10 in Canada. In fact, there would be only ~3,000 in the entire country. There would be less than 500 autistic children between the ages of 10 and 20, and not much more than 2,500 autistic adults, in the entire country.

Ms Dhalla is also saying that there are only ~25,000 autistics, of any age, in the entire country. And this very low approximate figure only applies if the prevalence of autism leaped from 1/10,000 to 60/10,000 (that's 1/166) overnight, about ten years ago. If Ms Dhalla is proposing a more gradual increase over the past ten years, then this would mean considerably fewer than 25,000 autistics in Canada.

Ms Dhalla is correct about the current-day consensual prevalence figure for the spectrum. But where does her figure of 1/10,000 for 10 years ago come from?

Eric Fombonne's Montreal data give an across-spectrum prevalence of 67/10,000 for children born 10 years ago, in 1996 (Fombonne et al. 2006). The two Baird et al. (2000, 2006) studies involved children born in 1990-1991, or at least 15 years ago; prevalence across the spectrum ranged from ~60/10,000 to ~100/10,000 (with the 2nd, very high figure being due to the ascertainment and diagnosis of high levels of secondary PDD-NOS). Chakrabarti & Fombonne (2001, 2005) found a high, stable prevalence across the spectrum of ~60/10,000 in children born between 1992 and 1998--that is, between 14 and 8 years ago. Honda et al. (1996) found a prevalence of the specific diagnosis of autism of ~21/10,000 in children born in 1988, 18 years ago; working from the cumulative incidence figure for that birth year (Honda et al., 2005), it would appear (I would stand to be corrected on this) that the across-spectrum prevalence would fall within the 60/10,000 range also. And so on. Ms Dhalla's 1/10,000 figure doesn't appear to come from the science, any more than her declaration of a "quite shocking" autism epidemic.

It seems more than likely that Ms Dhalla got her data from this "fact sheet" produced by two of Canada's leading "autism advocates", Brenda Deskin and Andrew Kavchak. This "fact sheet" has been widely distributed among Canada's political leaders, and is posted and promoted by Canada's most influential and politically active FEAT group. Ms Dhalla's contribution to the historic autism debate shows how seriously this "fact sheet" has been taken.

Canada has brand new 2006 census figures, so it's easy to compare the science (a high, stable rate of autism) to Ms Dhalla's "quite shocking" epidemic, the epidemic forcefully promoted by our most important "autism advocates":

The science says there are ~197,000 autistics in Canada in 2006. Ms Dhalla and our "autism advocates" say there are ~25,000 or less.

The science says there are ~26,000 autistic children from ages 10-19. Ms Dhalla and our "autism advocates" say there are less than 500.

The science says there are ~150,000 autistic adults in Canada. Ms Dhalla and our "autism advocates" say there are not much more than 2,500.

One of the major accomplishments of "autism advocacy" in Canada has been the denial of autistic lives. By anti-scientifically promoting an "epidemic" of autism, those who claim to represent all autistics in Canada are telling our leaders that the vast majority of autistics in Canada don't even exist. We aren't here and we were never here and we will never be here: we have no past, present, or future. Tens of thousands of autistic lives have been denied--stamped out, abolished, gone. "Autism advocates" are lobbying against assistance or accommodation for most autistics in Canada, by insisting that our lives are non-existent.

This erasing of autistic lives has clearly caught on among Canada's political leaders. These leaders can use the anti-scientific views of autism pushed by "autism advocates" to deny the obligation of governments to accommodate, assist, or even acknowledge the existence of most autistics in Canada.

Ms Dhalla's goal is an autistic-free Canada: she states directly that autism should be prevented. While waiting for this goal to be legislated and achieved, she has done an outstanding job of using anti-science to deny the lives of most autistic Canadians. That noise you hear is the sound of our celebrated "autism advocates", applauding as loudly as they can.


References:

Baird, G., Charman, T., Baron-Cohen, S., Cox, A., Swettenham, J., Wheelwright, S., & Drew, A. (2000). A screening instrument for autism at 18 months of age: a 6-year follow-up study. Journal of the American Academy of Child and Adolescent Psychiatry, 39, 694-702.

Baird, G., Simonoff, E., Pickles, A., Chandler, S., Loucas, T., Meldrum, D., & Charman, T. (2006). Prevalence of disorders of the autism spectrum in a population cohort of children in South Thames: the Special Needs and Autism Project (SNAP). Lancet, 368, 210-215.

Chakrabarti, S., & Fombonne, E. (2001). Pervasive developmental disorders in preschool children. Journal of the American Medical Association, 285, 3093-9.

Chakrabarti, S., & Fombonne, E. (2005). Pervasive developmental disorders in preschool children: Confirmation of high prevalence. American Journal of Psychiatry, 162, 1133-41.

Fombonne, E., Zakarian, R., Bennett, A., Meng, L., & McLean-Heywood, D. (2006). Pervasive developmental disorders in Montreal, Quebec, Canada: Prevalence and links with immunization. Pediatrics, 118, 139-150.

Honda, H., Shimizu, Y., Misumi, K., Niimi, M., & Ohashi, Y. (1996). Cumulative incidence and prevalence of childhood autism in Japan. British Journal of Psychiatry, 169, 228-35.

Honda, H., Shimizu, Y. & Rutter, M. (2005). No effect of MMR withdrawal on the incidence of autism: a total population study. Journal of Child Psychology and Psychiatry, 46, 572-79.

17 comments:

Joseph said...

But where does her figure of 1/10,000 for 10 years ago come from?

I've asked JB Handley the same thing. The answer so far: [crickets].

Michelle Dawson said...

What I've always wanted to know is why autism advocates are unwilling or unable to make their demands for services accurately and respectfully. Almost all the information they provide can be shown to be false (by, e.g., taking a glance the peer-reviewed literature). That 1/10,000 "fact" (who knows where it came from) is just one of way-too-many-to-count examples. Now this false information (a lot of it spectacularly false) is the basis on which all the major decisions are made about autistics in Canada.

jypsy said...

A surf into the Internet Archives to look at the 10 year old page of the Autism Society of America and the 5 year old page from the Canadian Autism Society (the oldest archived pages of each site) show figures far from 1/10,000.

Even 18 years or so ago when I first heard the numbers (as they were applied to Alex's odds) they were not 1/10,000.

abfh said...

Committing genocide becomes much easier when the very existence of the victims can be conveniently denied.

Michelle Dawson said...

On their current website, Autism Society Canada has some, uh, creative and contradictory information about epidemiology. I'll probably be writing about this later (I spoke about this in Toronto, at the TAAP bash).

Maybe Canada's leading autism advocates got the 1 in 10,000 figure from Unlocking Autism, or other similar authorities? The ABA parents here have always been indistinguishable from the vaccine/autism gang when it comes to embracing anti-science in the interests of scaring everyone with the "quite shocking" (thanks, Ms Dhalla) autism "epidemic".

Interverbal said...

It seems to come from Steinhousen et al. 1986 with rates at 1.9 per 10,000 (Just for Infantile Autism).

But that still wouldn't be ten years ago.

Michelle Dawson said...

Hi Interverbal,

I don't know Steinhausen et al's (1986) very short (3 page) paper, so I don't know which birth years they report (they seem to use Rutter's criteria, even though epi studies published earlier used the DSM-III) but I don't think they were telling the future... There's a ~15/10,000 figure for the specific diagnosis of autism (DSM-III criteria) published in 1987 (Matsuishi et al), so if we accept that Steinhausen et al's figure is really only 1/10,000 and is definitive, and ignore things like birth years of the relevant cohorts, that would be a, uh, quite impressive ... increase in autism prevalence in one year. Was there an autism crisis in 1987?

jypsy said...

I found a claim that "Kanner reported a rate of occurrence of 1 in 10000", presumably in the 40's or 50's ?(www.autismuk.com/index2.htm) This isn't in his '43 Paper (Autistic Disturbances of Affective Contact), do you know if this is indeed a fact (did Kanner report this) or just another internet "fact"?

Autism Speaks claims (on the blurb with their PSAs on YouTube) "Thirteen years ago, only 1 in 10,000 children was diagnosed with autism."

Michelle Dawson said...

Kanner didn't publish any autism epidemiology, but his autism criteria were used in some early epidemiological studies.

According to Fombonne (2003), Treffert (1970) used Kanner's criteria and reported a prevalence of autism of ~1/10,000. This is the lowest autism prevalence reported in any autism epidemiological study. I don't know which birth years were covered in this paper.

But the first published paper reporting an autism epidemiological study (Lotter, 1966) found a prevalence of~4/10,000. This study reported prevalence in children who were born between 1954 and 1956 (I hope I got that right), and did not use Kanner's criteria.

There are several published reviews which list the whole history of autism epidemiology (e.g., Fombonne, 2003; Wing & Potter, 2002). There is no published epi study before 1966, and no published epi study in which Kanner is an author.

Interverbal said...

Hi Michelle,

[quote]so if we accept that Steinhausen et al's figure is really only 1/10,000 and is definitive, and ignore things like birth years of the relevant cohorts, that would be a, uh, quite impressive ... increase in autism prevalence in one year. Was there an autism crisis in 1987?[/quote]

Yeah, I agree. I call shenanigans on the whole thing.

Interverbal said...

Hmmm..


The quote-ie thing doesn't seem to work here. Oh well.

mike stanton said...

Wing's paper, The Definition and Prevalence of Autism; A Review (1993) is available on line. http://www.mugsy.org/wing.htm

She excluded Treffert's paper because, "it was based only on inforation from computer print-outs. Treffert (1970) examined the prevalence in Wisconsin, USA among children, aged 3 through 12, seen by psychiatric or mental retardation agencies in the years 1962-67 and diagnosed as having 'Childhood schizophrenia'. He reported a total age-specific prevalence of 3.1 per 10,000 of whom 0.7 were considered to be classically autistic without any known organic cause."

"The study by Steinhausen et al. (1986) was excluded because the search for children was confined to two sources only, one being the university clinic for child psychiatry and the other a centre providing a programme for autistic children. The authors used Rutter's criteria (see below) to identify children with 'nuclear' autism aged under 15 and living in West Berlin, Germany on June 1, 1992. The age-specific prevalence found was 1.9 per 10,000."

Michelle Dawson said...

Thanks Mike! That's very helpful.

robin said...
This comment has been removed by the author.
Michelle Dawson said...

I took down Robin's previous message (here, see the end of the comments), because of the anonymous posting of a personal phone number, but I'm going to leave this one up.

And I'm going to repeat what I posted in response to Robin here (again, see the end of the comments).

I suggest that Robin contact the Autistic Self-Advocacy Network (ASAN). ASAN's website is here. There is contact information here.

Michelle Dawson said...

I'm no longer sure what Robin wants--is her priority now to get some kind of social skills training for her son? It seems to me that those who have harmed her son are the ones who (to say the least) lack social skills.

In any case, I'm going to repeat the comment I made in response to more, similar, recent comments from Robin here.

-----------------------------

Robin has posted numerous similar (all capitals, e.g.) messages on this and other blogs (e.g., see the messages here), most with one or two phone numbers attached.

According to Robin, this kind of action on her part does not seem to have led to the kind of help Robin wants. Robin has not given any reasons why the well-known organizations who Robin has approached have not been able to help or to refer her to those which could help.

I'm going to repeat my suggestion (above) that Robin undertake to get directly in contact with disability organizations, with organizations which can provide legal advice and assistance, etc., in the state where Robin lives. These organizations would have the possibility of helping her son or have the possibility of referring her to organizations and resources which may help her son.

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ROBIN HODGES said...

Please, remove my blog from 2008. Robin Hodges