Saturday, November 03, 2007

Erin Anderssen does not take autism seriously

The following is what I will probably send to Globe and Mail reporter Erin Anderssen, if I can get my email to work (yes, you can blame my computer for my long lapse in blogging)--about this Globe and Mail article.

Ms Anderssen,

With respect to "Autistics: We don't want a cure" from the Globe and Mail (November 3, 2007):

When I spoke with you, I stated directly that I should not be falsely described as an "activist." Once I understood what the word "activist" meant (this did take a while, which is typical for me), I knew I wasn't an activist--something I've known for some years now. Some people have called me an activist, but some people have also called me a fraud, and neither is accurate. At the time, you agreed that you would describe me only as a researcher. Yet in your article, you dishonestly chose to falsely describe me as an activist.

My correspondence with you also shows that I had not understood what kind of article you were planning to write. But once I realized you were writing an article about a cultural phenomenon (this was not what I had understood about your article; you had been referred to me by a scientist), I stated, in writing, that I should not be in this kind of article--which tends to add more irrationality to the already irrational public discourse about autism. But you put me in your cultural phenomenon article anyway.

And while I am in your article, the factual and verifiable information I gave you, which is typical of the information many autistics publicly provide, was overwhelmingly ignored. Instead, your article depends on caricatured and harmful stereotypes of autism and autistic people.

All my statements to you about neurodiversity (a subject far beyond the scope of autism, and about which I've written virtually nothing) included the information that neurodiversity is part of the general idea that disabled people should have human rights. I gave numerous examples from other disability areas, including blindness, Down syndrome and the general area of developmental disability.

I provided you with examples of legal cases where the demands of some parents of disabled children and the interests of disabled people were incompatible. Developmentally disabled people--who would be written off as "low-functioning" by autism advocates like Harold Doherty--have used the courts to oppose those trying to deny their human and legal rights. As I wrote to you, the work of groups like People First, which I admire enormously, exemplifies what neurodiversity means: that disabled people are fully human and should have human rights, regardless of how hard some groups and individuals work to write us off.

Instead of acknowledging this view, which is commonplace among autistics, you report only the false distinction, that autism is a difference but not a disability, as if disability is necessarily something wrong and inferior. This is the opposite of what I communicated to you, and the opposite of what neurodiversity represents.

But you were only getting started: then you go to town presenting extreme and offensive views--including that autistics are superior beings with "superpowers"-- held by some autistics. These unfounded and offensive views are, as much as possible, publicly criticized and opposed by many other autistics whenever they are expressed--an essential bit of balance that you totally failed to report.

You also failed to report what should be considered extreme views on the part of autism advocates, but which are in fact mainstream views supported by major autism organizations and political parties. For example, I provided you with FEAT's statement--in the Globe and Mail--that autistics who have not received unlimited ABA-based interventions starting early in life--that is, most autistics in Canada--must be institutionalized, abused (kept in restraints), and mutilated (our teeth pulled). FEAT is Canada's most powerful and influential autism advocacy group. Their extreme public statements have not resulted in any opposition or criticism from autism advocates, and have indeed been greeted with their applause. And FEAT has full support from two of Canada's major national political parties: the Liberals and NDP, whose only objection has been to any suggestion that FEAT's positions are extreme.

I also provided you with my one-sentence position: that autistics are fully human and should have human rights; and that autistics deserve the recognized standards of science and ethics that automatically protect and benefit nonautistics--such as yourself--and without which you could not proceed safely in society, much less have a good outcome.

This is the position that Mr Doherty so vehemently opposes.

I communicated to you the important question of why autism advocates--powerful and influential leaders like FEAT and Mr Doherty--have been unwilling or unable to make their demands for services--whatever those services may be--accurately (including with respect to the existing science), ethically, and respectfully.

I communicated to you the problem of autism advocacy leaders like FEAT and Mr Doherty writing off autistic people, denying autistics basic human rights, denying autistics recognized standards of science and ethics, and successfully demanding that laws that protect themselves should not protect us. The actions of Mr Doherty and others similar, as I wrote to you, make daily life difficult and dangerous for many autistic people--just as the denial of basic rights and standards, and of the protection of the law, would make daily life difficult and dangerous for anyone. Then Mr Doherty et al. point at our difficult and poor outcomes, declare us a crisis and drain on society, and demand that autistics be eradicated.

As I wrote in response to Mr Doherty's comments on my blog about self-injury and institutionalization, he would be the first to write me off if he saw me in difficulty. He would be the first to use me as an example of why autism is a horrific disease that must be eradicated.

Indeed, as I explained to you, I have experienced being written off via the values Mr Doherty and other powerful autism advocates embody--and impose on all autistics. No doubt I'll be written off this way again. I'm well placed to understand why autistics often suffer and have poor outcomes--and will continue to so long as Mr Doherty and others similar persist in dehumanizing us, in spreading false, anti-scientific information about us, in spreading the word that we're dangerous and violent and/or frauds and criminals, in denying us rights, standards, and the protection of the law--and in writing us off.

I provided a short summary of my views about neurodiversity when I first spoke with you. I don't know much about neurodiversity, but it's easy when there's organizations like the Canadian Down Syndrome Society, which disseminates information like this:

"Down syndrome is not a disease, disorder, defect or medical condition. It is inappropriate and offensive to refer to people with Down syndrome as "afflicted with" or "suffering from" it. Down syndrome itself does not require either treatment or prevention."
I also told you that in a major advertising campaign (including a large ad in the Globe and Mail), the CDSS expressed their ideal that in the future, intolerance will be cured, not DS. I could have added that the CDSS utterly fails to silence or deny the worth of people with DS based on what kind of DS they have or what their apparent abilities are. I did tell you directly that only autism advocates would leap to the irrational presumption that the CDSS is really saying that DS people (unlike all other human beings) do not need assistance or services, and that DS people (unlike all other human beings) never suffer at all and never face any challenges or difficulties.

But large portions of your article are founded on this kind of irrational presumption, which would be instantly spotted as both absurd and dangerous in any other disability area.

I have no idea where this bit of your article

"They say autism should be seen as part of the “neurodiversity” needed to evolve smarter human beings
and this one

"In blog discussions, autistics sometimes even speak of themselves as a “superior species”
and many others similar ("superpowers," etc.) came from, as they (and many positions attributed to "autistics" in your article) were not sourced. But as I noted above, a lot of autistics, myself included, consider that statements like these--and many of the views ascribed to autistics in your article--range from unfounded to ludicrous, extreme, offensive, dangerous--and/or pathetic. Etc. Many of us have publicly written a lot in criticism of and opposition to these views.

Yes, you are free to choose to report claims of unfounded, offensive, etc., views held by some autistic people--from whatever sources you wish. But reporting these views as though they were representative of "neurodiversity" or of autistics is dishonest and unethical. It is in the same neighbourhood as taking David Ahanakew's (or James Watson's) extreme and offensive statements, and reporting them, without naming their source, as being representative of the views of aboriginal people (or white people). And then seriously reporting the views of non-aboriginals (or non-whites) about these extreme and offensive positions held by aboriginal people (or white people).

The Globe and Mail should print a correction, clarification and apology. First, a correction--of the false information in your article that I'm an activist, which you dishonestly reported. Second, a clarification--to make it clear that many of the views you have ascribed to "autistics" or associated with "neurodiversity" are regarded by many autistics, myself included, as ranging from unfounded to offensive and dangerous, contrary to the strong and misleading impression given throughout much of your article. Third, an apology--for the problems caused by the false information printed in your article, as well as for recklessly and knowingly (you did not lack accurate, verfiable information) promoting harmful stereotypes of autistic people as a group.

I realize this request is ridiculous. It belongs in an as-yet non-existent world, where autism and autistics are taken seriously. As I've written before, autism advocates trivialize autism and in so doing, harm autistic people. Autism advocates, who claim to know what's best for all autistics, do not take autism seriously and, following their powerful and influential leadership, nor has the Globe and Mail.


Michelle Dawson
Autism Specialized Clinic
Rivière-des-Prairies Hospital
University of Montréal