Advocatus Autismus Diaboli: Advocacy from Hell
October 27th, 2008
A few weeks ago, on the Autism Street ’blog, I saw a discussion of the distinction between autism advocacy and anti-autism advocacy. It started me thinking - always a chancy thing.
One commentor gave a definition of autism advocacy - one which I think that few people would disagree with:
“[A]utism advocacy” has to do with understanding and support of families affected by autism, educational needs of children with autism, becoming educated about, and advocating for meeting the needs of older children and adults with autism, advocating for needed services in the community and like topics.
A second commentor came up with a good definition of how “autism advocacy” is seen by autistic people themselves.
“Autism advocacy” is the widespread effort to make the world as free of autism — that is, of autistic people — as possible.
The ’blogmaster, D’oC came up with the term anti-autism advocacy to describe those people whose goals - stated or implied - fit the latter definition better than the former. I don’t know if he coined the term or found it somewhere else, but it truly fits.
As I contemplated this curious dichotomy, it occurred to me that most organizations, governmental agencies, foundations and informal groups that claim “autism advocacy” as part of their mission seem to fall into the anti-autism advocacy category.
This isn’t to say that even the most militantly “autism-is-the-scourge-of-the-earth-and-must-be-eradicated-completely” group doesn’t - on the rare occasion - do something that at least partially helps actual autistic people; most groups (there are exceptions) have a mix of both activities. However, most of the more prominent groups seem to lean rather heavily to the “anti-autism” side and give only lip-service to helping autistic people (apart, of course, from “curing” them).
There are, in fact, very few organizations or groups that are predominantly focused on helping autistic people, as opposed to parents of autistic children. I won’t go into who is and who isn’t, since that would distract from the point of this article (not to mention exposing me to lawsuits - some of the anti’s are also very pro-lawsuit).
What I’d like to do is propose a set of definitions to “disambiguate” our discussions of “autism advocacy”. I’d also like to introduce a term of my own.
Definitions:
[Note: the activities included in the definitions below are NOT meant to be an exhaustive list of what the different types of advocacy involve. Failure to include an activity in the admittedly short list included in the short definition should NOT be construed to imply that the author feels that that activity is NOT a part of that type of advocacy. Thank you for not putting words in my mouth.]
Autism Advocacy: Speaking for, lobbying for or otherwise working to improve the lives of people with autism. This would include - but not be limited to - removing obstacles to greater independence, helping them to reach their highest potential and assisting them to express themselves in words, writing, art and music. It would also include helping autistic people free themselves from oppression, abuse and exploitation. This would also include researching and disseminating accurate information about autism.
Anti-autism Advocacy: Speaking for, lobbying for or otherwise working to eradicate autism. This would include - but not be limited to - researching the causes of autism, ways to prevent autism or ways to treat or “cure” autism. Included in this would be efforts to disseminate and publicize accurate information about causes, prevention and treatment of autism.
I think from those two definitions, you could figure which groups do autism advocacy and which groups do anti-autism advocacy. But I think that there is a piece of the puzzle missing - and here it is!
Autism-angst Advocacy: Speaking for, lobbying for or otherwise working to increase the public fear of autism. This would include - but not be limited to - disseminating informational material implying that autistic people are unable to function independently or have a reasonable quality of life, that autism in its greatest severity is the norm, that common activities, household products or medical interventions cause autism (without data to support such a claim) or that children with autism do not develop at all without extensive use of untested psuedo-medical “therapies”.
I think that this third cetegory describes certain autism-related groups better than either of the other two. After all, there are certain organizations that seem to be uninterested in helping autistic people and yet are not actively working to find a cause, prevention or cure. What they do seem to be doing is stirring up a lot of fear and anger. Thus, autism-angst advocacy - for the people who don’t want to be part of the solution.
Autism-angst advocacy appeals to the people who want someone to blame, who want those smug, satisified parents with “typical” kids to share their fear, who want to show the world that there’s nothing wrong with their genes, by damn! It attracts people who aren’t ready to deal with the child they have and want to spend a little more time wallowing in fear and anger over the child they didn’t get.
It also appeals to people who are tired of doctors and scientists being the only ones who can do meaningful medical research. It’s very post-modern in its ideas that the “narratives” of parents are the equal of any “numbers from a study” or “epidemiological herd”. This also appeals to many second- and third-tier “alternative” practitioners, who find the “Data!?! We don’t need no stinkin’ data!” attitude very conducive to their practice.
The ultimate purpose of autism-angst advocacy is harder to fathom, since increasing fear and anger about autism will not help autistic people (quite the opposite!), their families (ditto!) or autism research (double ditto!). In fact, it makes no sense at all unless its purpose is to generate an inchoate anger that can be directed at whatever target - vaccines, doctors, “the government” - that the leaders choose in order to generate political power.
Of course, it doesn’t have to make sense. It may be that the leaders of the autism-angst movement have no purpose at all beyond wanting other people to be as frightened and angry as they are. Misery loves company, we are told, so it would definitely like a rally…or a mob.
Whichever way the autism-angst advocacy groups are heading - directed mass action or accidental mob implosion - we should all be keeping an eye on them.
Prometheus
Filed under: Autism Policy | 44 Comments »