Tuesday, April 03, 2007

The autistic person's burden

The major media have been buzzing with stories about the crushing burden autistics place on non-autistics. This reporting stems in part from the journal publication of data also published in a 2006 book (with the unintentionally ironic title of "Understanding Autism"), summarizing every autistic life as a vast financial liability.

This is also partly the fanfare surrounding the release of Canada's Senate Committee autism treatment funding report, which is poetically called "Pay Now or Pay Later".

This title resonates with the advertising slogans of "diagnostic teams" in India, as recently reported in The Times. These diagnostic teams promise to eliminate disabled children--those lacking a Y chromosome--before birth, thus entirely relieving families of the massive financial burden of raising a female child. And they provide a compelling cost-benefit analysis in their slogans:

"pay 600 rupees now, save 50,000 rupees later”

The media have also been buzzing about the latest Autism Speaks creation, the Interactive Autism Network. This network, like its sponsor, was created without any autistic input whatsoever, and is likely to continue that way. Non-autistic parents of autistic children, in contrast, are welcomed as essential and expert collaborators.

In her most recent editorial, The True Meaning of Research Participation, Association for Psychological Science President Morton Ann Gernsbacher has written a powerful antidote to these two related problems: the wholesale exclusion of autistics from any decisions related to autism research, and the escalating rhetoric relegating autistics to the role of non-autistic person's burden.

Here she provides insight into how these two aspects of prejudice may go hand in glove:

It takes just a cursory stroll through history to view the shocking collage of groups deemed incapable of stepping up to the research plate. In 20th century psychological science alone, we have Mary Whiton Calkins, the brilliant protégé of William James who, by lack of a Y chromosome, was denied her PhD at Harvard (but who later became APA’s first female president). It’s quite unlikely that APA’s founder and first (male) president, G. Stanley Hall, believed that members of ethnic minority groups would be suitable research collaborators, given his disturbing attribution of “adolescent races” who “would be better in mind, body, and morals if they knew no education.”

Maybe we shouldn't be surprised that when females and non-whites were written off as unqualified to collaborate in research, they were also judged to be burdens and dependents on their natural superiors--as in "the white man's burden".

While it makes me blush, I strongly recommend that you follow the link to Dr Gernsbacher's column and read the whole thing, and contemplate who is a burden on whom.

No one has yet calculated the costs to autistics, and to society, of the current widespread autism advocacy effort to create a world where there are no autistic people at all.

The truly staggering costs of this effort, and its consequences and byproducts, are unlikely ever to be calculated. After all, autistics are now routinely judged as having and being nothing to lose. The only way we can possibly benefit society is to stop existing--surely, society can pay even less if the existence of all autistics is prevented? Surely society would be better, if only us suboptimal types who are dragging down society receded into history and vanished?

Unless autism advocacy--the autistic person's burden--is successfully supplanted by genuine science- and ethics-based efforts to assist autistic people, we will never find out what autistics can achieve and contribute, in a society where it is okay to be autistic.