Thursday, November 27, 2008

Even more Autism Speaks epidemiology

In a May 2005 press release, Autism Speaks announced that there are "nearly 2 million people in the United States living with autism." More than three and a half years later, Autism Speaks claims that "1.5 million Americans may be affected with autism."

You would think that given their goals, Autism Speaks would be celebrating the reported--by Autism Speaks--disappearance of ~500,000 autistics in less than four years. But remarkably, this reported dramatic decline in number of autistics is instead considered by Autism Speaks to represent "a national public health crisis" and a "global epidemic of autism." What's more, Autism Speaks currently reports that

"the rate of autism is rising 10-17 percent annually. Unfortunately, the numbers appear to be continuing their upward climb."
Autism Speaks' epidemiology is characterized by two overlapping themes. One is an absurdly dishonest and contradictory reporting of the easily-available evidence. The other is a pervasive disrespect for autistics, whose lives Autism Speaks expediently and anti-scientifically denies.

In a previous post, I quoted a sentence that graces every Autism Speaks press release. Here it is again:

The prevalence of autism has increased tenfold in the last decade.
In this one widely-distributed sentence, Autism Speaks grossly misrepresents the scientific literature; rejects the scientifically sound position that there has been a high, stable rate of autism; and wipes out the lives of 90% of autistics who existed more than 10 years ago.

But this is still not sufficient for Autism Speaks' political purposes. Here are some more Autism Speaks statements about the prevalence of autism:

February, 2006: "a decade ago... 1 in 10,000"

March, 2006: "1 in 10,000 just 13 years ago."

April 6, 2006: "Thirteen years ago only 1 in 10,000"

March, 2007:"1 in 10,000 -- it was 13 years ago"

April, 2007: "Fourteen years ago only 1 in 10,000"

May, 2007: "it was 1 in 10,000 just 13 years ago"

May, 2007: "13 years ago, 1 in 10,000"

November, 2007: "1 in 10,000 just fourteen years ago"
In these statements, Autism Speaks is--at least--also erasing the lives of more than 98% of autistics who existed more than 14 years ago.

While any calculation is of necessity very approximate, if the epidemiology Autism Speaks widely disseminates is taken seriously, then public policy decisions would be based on there being not many more than 300,000 autistics in the US, of whom the vast majority (~270,000) would be young children. A very small number (~14,000) would be older children, and there would be very few (~22,000) autistic adolescents and adults.

And of course this is in total contradiction with Autism Speaks' claim that "1.5 million Americans may be affected with autism." Meanwhile, a science-based estimate would be 2 million autistics in the US, of whom about 500,000 are children (the number of autistic children, ages 0-21, in the US is estimated by the CDC to be 560,000).

In the 2007 UN resolution about World Autism Awareness Day, a resolution heavily influenced by Autism Speaks, virtually all autistics are presumed to be children (see also this message). There is no mention of autistic adults, just the "high rate of autism in children," and that autism is a disability "mostly affecting children."

Autism Speaks' autism advocacy message is getting around the world: autistics don't deserve the protection and benefit of even minimal standards of science, ethics, and advocacy; and older autistics do not exist and need not be considered.

[Conflict of interest declaration: I'm affiliated with a research group which receives funding from Autism Speaks, among other funding sources.]


Chris said...

I'm impressed. At a growth rate of 17% p/a a back-of-the-envelope calculation says that the rate will reach 100% by 2040.

That's with pretty crappy math, though, because under that calculation we have a more than 100% chance of being autistic in 2041, which is impossible; still, it's an order of magnitude figure, I suppose. I'm sure you know the correct function to use to get the right answer, but it can't be far off that.

Michelle Dawson said...

A few years ago I roughly calculated the year when everyone would be autistic, according to Autism Society Canada's claims (which are similar to Autism Speaks') about ever increasing rates of autism. It was 2035. Mark it on your calendars...

David N. Andrews MEd (Distinction) said...

"It was 2035. Mark it on your calendars..."

Looking forward to that!

Will be interesting to see how the likes of Harold Doherty cope with that eventuality!

jypsy said...

If you thought Autism Speaks was disappearing autistics, how about the Canadian National Autism Foundation:

"Back in 1998 to 2000, it was one in 25,000; now, it’s one in 150"

Anonymous said...

How hilarious the end of the world will be here in 2035. It really makes you feel good about society when a group of people can do back-of-the-envelope math and laugh about our children. The canary in the coal mine is dead. I do not care what the exact stats are. My son does not get help with insurance, therapy, or respite. If you want something really funny check out this blog post where the dad shot his child then himself...

Michelle Dawson said...

In response to Anonymous, there's nothing funny about major autism organizations (Autism Speaks, Autism Society Canada), who are deciding the future of all autistic people, spreading false information about autistics. This harms us.

There's nothing funny about major autism organizations denying the existence of most autistic people. This means we can't, e.g., get even basic services, of the kind nonautistics can take for granted.

I strongly disagree with Anonymous, who is promoting the autism advocacy claim that when autistics are neglected, harmed, abused, mistreated, killed, etc., by others, this is evidence that there's something terribly wrong with autistic people.

Tim said...

In no way do I take anything away from an individual with autism uniqueness and creditability as an individual. I myself am on the spectrum. If we compared notes, I probably have the same issues with Autism Speaks and other groups. My issue is this whole thing is not a laughing matter. My son is not at a level where he can function and be independent. I am sorry. I did not mean to offend

Michelle Dawson said...

The false information widely disseminated by autism advocates about autistics is sometimes absurd, as well as harmful.

Pointing out this absurdity is not wrong. It is necessary. Many of us have been and continue to be harmed by the false--including absurdly false--information widely disseminated by autism advocates.

If autism advocates took autism seriously, they would not trivialize autism and the lives of autistics by widely disseminating such grossly and absurdly false information about us. We then have to live with the consequences.

Here I wrote about some of the many ways in which autism advocates trivialize autism and do not take autism seriously.

Anonymous said...

For the last two years, we have been gathering information, interviews, and findings for our documentary film, "Neurotypical." We have been focusing on a variety of individuals on the autism spectrum who, in their own words, speak about their lives and experiences. We are not so interested in interviewing individuals because of their extraordinary abilities nor do we wish to focus on sensationalizing the subject. Because we want to avoid making assumptions, spouting theories, and generalizing about autistics, we are filming the stories from the perspective of autistics themselves. We only recently came upon your work through the Newsweek article of August, 2007. As a researcher, your insight might be very helpful to this project. Perhaps, if you care to look at our website, we can have a further conversation.

Mark William Miller said...

Thank you for your tireless and level-headed work. Please keep fighting and writing. I would love to see you write on the many bio-medical treatments that helpless autistic children (and adults) are being subjected to. My own son was subjected to chealation and high doses of Actos (as well as restrictive diets) before I was able to use the courts to put an end to it.

jypsy said...

Michelle, I'd love to see you update the list to include :
October 1, 2009"in the last decade, from 1 in 10,000"

(But then again, there's also:
Apr 13, 2009"Fifteen years ago only 1 in 10,000"

In the early 1990s, the incidence of autism was put at 1 in 10,000"

29-Sep-09"Fourteen years ago, only 1 in 10,000"