Friday, August 26, 2011

Ari Ne'eman at the Syracuse University Neurodiversity Symposium, Part 2

Three weeks ago, Syracuse University hosted its first regional Neurodiversity Sypmosium, with Ari Ne'eman as the keynote speaker. Mr. Ne'eman is President and co-founder of the Autistic Self-Advocacy Network, as well as a presidential appointee to the National Council on Disability. He spoke both fiercely and wittily about both neurodiversity and self-advocacy in the past, present, and future.

TPGA is publishing a series of excerpts from Mr. Ne'eman's talk. This is part two. Part one was published one week ago, and focuses on the history of the disability rights movement. Part two centers on power and perception, about how "...in the autism world, what autism is -- and what we should do about it -- is very much under conflict."


TPGA was given an audio copy of Mr. Ne'eman's talk by journalist Steve Silberman, who is currently researching a book about neurodiversity. Thank you, Steve.

A couple of years ago, in December 2007, the Autistic Self Advocacy Network and a number of other disability right groups mobilized in response to the very offensive ad campaign put together by the New York University Child Study Center, and many of you are familiar with this campaign: it's called Ransom Notes: a series of fake ransom notes were posted across New York City in posters and billboards and magazine ads -- produced by BBDO, the ad firm that does Pepsi Cola advertising, so it was a big deal. And each of these ransom notes claimed to be from a particular disability, claimed to have stolen a child, and left God knows what in its place. One said, "We have your son, we will make him fidget and squirm until he's a detriment to himself and everyone around him. Signed, ADHD." Or, "We have your child, we'll make it impossible for him to have friends or live independently for as long as he lives. Signed, Autism."

They had a series of these. And when we objected, when we protested, and when -- thank God, because they usually don't do this when disabled people protest -- the media got interested, the head of the NYU Child Study Center, Dr. Harold Koplewicz, said to the New York Times that "Well, frankly, I'm surprised. I was not expecting to be getting criticism from adult patients." Because that's how we think of ourselves when we wake up in the morning, right? "I'm an adult patient today. I used to be a child patient but then I grew up."

That is the mindset of the people who possess the majority of power in the autism conversation, and large parts of the disability conversation in America today. It's like the old phrase, "If all you have is a hammer, the whole world looks like a nail." If your context for relating to people with disabilities is in the context of medical service provision, or medical treatment, then when you talk about disability -- and again, in our society, when policy makers or media want to hear about disability, they typically do not go to those of us with disabilities ourselves. They go to experts: The MDs and PhDs of the world.

But when the media and policy makers go to those experts, and they ask about anything to do with disability, like "What are the issues disabled people face in trying to find employment," or "What are the issues disabled people find in trying to find friends," as if they would know better than we would, their responses are always, quite explicitly, in a medical context.

We saw this again, quite recently, when the Center for Disease Control and Prevention put forward a proposal to create a diagnostic code for wandering behavior in the ICD-9-CM, which is the hospital billing code that hospitals and service providers use in order to get insurance reimbursement. And what they were saying was, "Because some disabled people wander away from their families or caregivers, that we should ascribe this as a medical trait, so that insurance reimbursement can be given for tracking devices or anti-wandering measures. And they did some quick and not very high quality research to support this an an issue, that they should create this diagnostic code.

In the research, they pointed to this very high number, this statistic of between 85 and 92 percent that showed that this many Autistic children wander. And what I find interesting about that research is that this is an incidental matter. They collected data about why families or caregivers thought that their children or adult relatives were wandering. And the reasons were very interesting: "Wanted to remove oneself from a place that was unpleasant." "Wanted to go to a favorite place." "Was pursuing a special interest." "Was bored."

But because in the minds of so many, to be a disabled person, and particularly to be an Autistic person -- because we are more medicalized than many in the disability community, because our civil rights movement is still so new -- is to have everything take place within a explicitly medical context.

Now we are currently seeing this play out in other sectors as well, as with the wandering code -- and I'm sad to say that the CDC won on that. As we look forward to budget cuts in the future, people with disabilities receiving home- and community-based services may not be able to get assistive technology, may not be able to get assistive care, may not be able to get transportation -- but thanks to the wandering code, there's a damned good chance we'll be able to get tracking devices.

This is part of a broader conflict that we're seeing, and it's a conflict that is playing out -- at least from the perspective of the autism community -- over different ideas about what autism is, and what the goals of the nation, with regards to autism, should be.

We have fairly clear ideas as to what the goals of the nation with regards to disability should be. The Americans with Disabilities Act of 1990, finding number seven, states: "Congress finds: the Nation's proper goals regarding individuals with disabilities are to assure equality of opportunity, full participation, independent living, and economic self-sufficiency for such individuals." Very clear goals.

But in the autism world, what autism is -- and what we should do about it -- is very much under conflict. And I find it fascinating, because right now, you could not find a disability category that is getting more public attention. Pick any Hollywood celebrity, and the odds are very good that they've done an autism fundraiser. You pick any television series, and the odds are very good that they've suffered from Very Special Episode syndrome. You would be very hard pressed to find some aspect of life in which autism is not being talked about. And yet despite that, we see very little measurable progress in the lives of Autistic people ourselves.

Approximately a third of Autistic students spend less than 40 percent of our time in general education classes. It's one of the highest rates of exclusion in any category of students with disabilities. The data that we have on people with developmental disabilities in home- and community-based service provisions system finds that Autistic adults are much less likely to report having our rights respected, and having the opportunity to exert choice and control in the kinds of services we receive -- ranking from big things, like picking your own staff; to small things like having the right to read your mail without having somebody open it for you and check whether or not it's appropriate. We have data which shows that only about 39 percent of Autistic adults needing community service provisions have a co-occurring diagnosis of mental illness, yet about 40 percent are receiving psychotropic medication -- which suggests a very high rate of chemical restraint.

And across the board, in every area we're measuring, the lives of Autistic people are worse than the lives of other groups of people with disabilities. And this in spite of the fact that, once again, autism is far more visible than any other disability category.

How did this happen? I think we can see a number of explanations when we look at where this public perception is going to, where these research dollars are going, where this political will is going. On an annual basis, 314 million dollars, approximately, is spent on autism research in this country, and that's both public and private dollars. Would anybody care to hazard a guess as to what percentage of those dollars are spent on the needs of adults on the autism spectrum? Less than one percent.

I believe research is a statement on the part of society about what it decides to invest in, with regards to future it desires. What does that imply, when less than one percent of the autism research agenda is spent on the needs of autistic adults? Anyone want to hazard a guess as to what percentage of the autism research agenda is spent on improving services or support strategies? Three percent.

The vast majority of the autism research agenda is spent on the very narrow objective of causation, and cure, and prevention. And I think this reflects what people perceive the goals of society with regards to the autism spectrum. Not to make the world better for Autistic people, not to make a world in which Autistic people have more opportunities, in which we have more chances to participate, in which we have more chances to be included in that big nebulous concept knows as The American Dream. Instead, we see a world in which we don't exist. And people, frankly, are quite explicit about that.

When the Combating Autism Act was passed in 2006, the founder of Cure Autism Now and the founder of Autism Speaks declared the act to be a declaration of war on autism. And the founder of Autism Speaks said that he was very thrilled about this, because when we got rid of autism, when we "made autism a word that only exists in history books," he would "have my grandson back." He has an autistic grandson, but in his opinion he clearly doesn't have a grandson at all, by virtue of the fact that that grandson is Autistic.

I think that reflects how these people look at the objective of the work that they're doing. If you turn on a TV and see an Autism Speaks advertisement, having a child with autism is compared to having a child in a fatal car accident, or to having a child be struck by lightning -- or any number of fatal, negative incidents of life. I think that reflects, very clearly, how they define their goals. There's a book that came out in the parent community not too long ago called I Wish My Kids Had Cancer: A Family Surviving the Autism Epidemic.

Now, how did we get here? How did we get to the point where all of this money, and all of this power, was so divorced from any semblance of the needs and aspirations of the constituency that was attempting to be served, or that was being talked about? I think to understand that, we have to look at the broader history of the autism community. [Which will be next week's installment. -Editors]

You can view the full talk -- including jokes, asides, and audience commentary -- in the webcast of Mr. Ne'eman's keynote.