Autism Culture in Salon

Via Michelle Dawson's Autism Crisis blog, I have just read a recent Salon article about the supposed "burgeoning "autism culture" movement". This is presented as an idea with which "not all parents or medical experts agree." Amazingly, Elizabeth Svoboda the article's author, totally misrepresented the work Michelle Dawson does and just invented a belief system for her. Ms Svoboda did not contact Michelle before writing about her. Michelle works as an autism researcher but is mistakenly called a "autistic-rights crusader" who "convinced the Canadian Supreme Court to overturn an appeal that would have provided state funding for ABA therapy." Read Michelle's post to learn the truth about her court appearances.

Ms Svoboda writes,

Like the deaf culture movement before it, the so-called autistic culture movement continues to gain traction, boasting thousands of adherents among parents, patients and healthcare professionals. And the rhetoric is often as strident as anything out of the deaf-pride movement. Some autistic people even use the pejorative term "curebie" to refer to people who hope for a cure for the condition. Organizations like Autism Network International view efforts to cure autism as similar to misguided efforts to cure homosexuality and left-handedness.

As its associated swag -- buttons and T-shirts proclaiming "I am not a puzzle, I am a person" -- suggests, the movement aims to redefine autism as something to be valued and protected, not obliterated. Proponents insist that forcing autistic people to behave like "neurotypicals," a term that borders on insulting, squelches the very qualities that make them unique.

Ooh scary, rude people, calling those who push any old untested, dangerous and painful "treatments" on little autistic children by pejorative terms and calling people whose brains function in a typical way the borderline insulting term, "neurotypical."

Would she prefer they (we) be called normal? Also, few would call those who merely hope for a cure curbies. Like others I know, I don't much like the words curbie and neurotypical and prefer to use pro-cure and non-autistic (or when referring to children, typically developing).

Is there anything wrong with autistic people proclaiming their personhood on buttons and T-shirts? Does Ms Svoboda have any idea of the long history of dehumanising language and
treatment autistic people have endured and continue to endure? There are a few examples on the Autism Demonized blog and more on my blog under the label "disablism."

Neither can I understand how Ms Svoboda, came to the conclusions she did based on the quotes given by the 3 supposed representatives of "autism as a culture" in her article.

Ari Ne’eman, president of the Autistic Self Advocacy Network is quoted as saying,

"The real ends for autistic people should be quality of life, full access in society, the kinds of things we support and are working for. Parents have been told that the way to approach these things is to support research for a cure, but our belief is that that's not the most effective paradigm.
The cure paradigm sends a message that there is somehow a normal person under the autistic person, and that's a significant denial of who we are."

These are reasonable points to make. A cure is not going to help autistic children and the adults they will become. I don't see how this can be rephrased, as Ms Svoboda does as, "Jenny McCarthy can go jump off a cliff"? I think she's setting out a false alternative of cure versus culture when it's a bit more complicated than that.

Kathleen Seidel is quoted as saying,

"A person's nervous system is not fundamentally going to change -- an autistic person is going to remain autistic throughout his or her lifetime. And it can be very problematic and a source of stress for an autistic child to have to suppress certain mannerisms."

No, nothing about autism-as-a-culture there either.

Dora Raymaker is quoted as explaining her preference to communicate via text chat,

"If we'd done this interview on the telephone you would have been lucky to get much more than disjointed, stuttering, completely non sequitur responses from me. But because you allowed me to do this interview through text-only media where I can slow down, really understand you, and bypass my difficulties with spoken language, I'm able to give you intelligent, on topic answers. Do I need a pill to make me suddenly able to have phone conversations, or do I need you to be able to find a middle ground that bypasses my disabilities?"

Oh dear, Dora actually used the "D" word! But never mind, just misrepresent her too and pretend she thinks autism is just a difference:

The key assumption that underlies much autistic culture discourse is that any autism-related limitations can be worked around and dealt with in a way that does not compromise the autistic individual's core "personhood." When such workarounds are found, Raymaker asserts, the concept of a "cure" becomes irrelevant.

From my reading of the piece, Ms Svoboda would do well to read a bit about the social model of disability. Some people have mobility-related limitations that can be worked around with the use of a wheelchair and assessible transport and services. These do not compromise the person's core "personhood."

Harold Doherty is interviewed and does his party party piece of making stuff up about those uncaring neurodiveristy types. Then near the end of the article Ms Svoboda makes the following fabulous claim, that "the autistic culture movement may come off as dogmatic at times." Oh my. When compared to pro-cure proponents like the aforementioned Jenny McCarthy and her Generation Rescue buddies, the tricksy lawyer, the ABA battlers, sure, those of us who reckon autistic people should be treated well and not cured or eliminated are really dogmatic!