Friday, September 2, 2011

Ari Ne'eman at the Syracuse University Neurodiversity Symposium, Part 3

Four 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 three. Part one was published two weeks 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."
In part three, Mr. Ne'eman talks about the divorce of the autism conversation from the larger developmental disability conversation, the tyranny of "normal" expectations for Autistics, and the shared hopes of the parent and self-advocate communities.

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

If we go all the way back to the 1950s and 60s, the prevailing view of autism was one of a childhood onset disease that was caused by poor parenting. And there was this idea put out there by Bruno Bettleheim, this horrible libel, that autism was caused by "Refrigerator Mothers," by mothers who were cold to their children, so their children withdrew. And it took a lot of time to get that disproved.

But that libel had long-term consequences even after it was disproved, because it separated the autism conversation from the larger developmental disability conversation. It established a precedent that even at the same time people like Eunice Kennedy Shriver and other advocates in the disability community and particularly the developmental disability [DD] community were focusing their efforts on de-institutionalization and community inclusion and things of that nature, the autism conversation was focused on two things 1) What caused it and 2) How do we get rid of it?

And I think that was a very natural response of parents pushing back after being accused of something. The way in which that pushback occurred meant that even after that accusation was defeated, the rest of the conversation did not shift to the things that the rest of the DD community was thinking about or focusing on. It shifted to new accusations, from new sources. And it shifted to new discussions as to how to make people more "normal." I think we can look and we can see two interesting culprits for the divorce of the autism community from the larger DD and disability rights community: Bernie Rimland, and Ivar Lovaas.

Now Rimland's claim to fame, and he deserves credit for this, was that he was the doctor who really debunked the Refrigerator Mother theory. And in part because of that he was looking for something else to put in its place. And what he settled upon was something that's familiar to many of us today, because it's a focus that's still with us despite all manner of science to the contrary, was the idea that autism was caused by immunizations, by vaccines. And his Autism Research Institute went to work selling various supplements and other such treatments (and I use that term in the broadest possible sense) to families in order to reverse the damage wrought by vaccines -- never mind how little science there was supporting that at the time, or how subsequent scientific studies found there was no connection between autism and vaccines.

But, as Rimland put forward his medical treatments -- pseudoscientific medical treatments, but that's not how they were conceptualized, for the moment we'll call them medical treatments -- from his standpoint, the broader focus of making disabled people's lives better, in my opinion he saw that as less important -- because through his treatments, they didn't have to be disabled any more. And in fact Rimland was a very vocal opponent to the de-institutionalization movement in this country. He wrote an article decreeing that "advozealots" (his term, not mine, he's talking to parents) "are talking about closing down the institutions … and are harboring the dangerous delusion that your children are not really handicapped and can make their own choices." God forbid we should subscribe to that dangerous delusion.

But it's instructive to see, in the modern day autism community, when we look and see where the Voices of the Retarded group -- which is horribly named, but that's their name -- the last remaining parent group that fights to keep the institutions open, despite the consensus of the broader disability community that we should not be warehousing people and that people don't belong in hospitals, but belong in homes. Where is VOR getting its new recruits? Well primarily, they're coming from the autism community. And if we look and we see where new, segregated schools are being built, we're seeing them primarily being built to serve the autism community. And that's part of a larger legacy, going back to Rimland, of the autism conversation not progressing to the broader DD conversation, because as long as the objective is primarily cure, these broader measures of social inclusion, they're less important. Services, supports, they become a band-aid until we can find a way to remove Autistic people altogether.

One presentation I heard on this topic at the National Institute of Mental Health was titled Finding a Cure for Autism and Meaningful "Until Then" Research. And the mindset that making it more likely that people will have jobs, more likely that people will have friends, more likely that people will have community, more likely that people will have quality of life is just "until-then" research or "until-then" policy goes a long way to explaining how we're in the horrible circumstances in which we're currently in.

Rimland was not alone in advancing this focus on normalcy, in trying to make Autistic people normal his primary objective. In the 1960s, Ivar Lovaas had two major projects at UCLA. And one of them was his Autism Project. And the other was was called the UCLA Feminine Boys Project, where Dr. Lovaas and his colleagues attempted to recover at-risk children from homosexuality. And the methodologies which Dr. Lovaas utilized with regards to the Feminine Boys Project and the Autism Project were not substantially different. In a 1965 Time Magazine article titled Screams, Slaps, and Love, Lovaas stated that his objective, and that how he would define success in treating these autistic children, was to make them "indistinguishable from their peers."

Because once again, that's what we all wake up in the morning, thinking "How can I be indistinguishable from my peers?" And there are people who yearn to be "normal," there are people who yearn to be more like their peers, but I think generally, the reason one yearns to do that is that someone is doing something terrible to you, because you're not "normal," and not because you have some intrinsic desire to be like other people. But that was not Lovaas's thinking. And Lovaas's effort was one that was duplicated in a lot of circles, one that was seen as the gold standard with regards to autism interventions -- that through a combination of rewards and punishments, autistic children could be "recovered" by virtue of having us look like our peers. And that we are wrong when we do not. And this is something that, once again, has had long-term implications and consequences -- not just for research, again, with the constant focus on cure -- but it's had consequences in peoples' lives.

I've had occasion to talk to talk to with some of the children -- now adults -- that Lovaas classified as "recovered" Autistics, and it's very interesting, because many of them are re-diagnosed later in life, or realized that they are still Autistic -- because this idea of "recovery" is somewhat of a silly one. And they still suffer from the post-traumatic stress of being taught at a very early age that the most natural way of being that they have is wrong. It's not something that might cause problems in certain contexts, like a job interview; it's not just something that sometimes people will hold against them because they have prejudices -- it's wrong. And the way that they can be right is by trying to be like other people.

This is a very hard way to live your life. That's a way that, we know from our friends in the GLBTQ community, who have done a lot of work on the topic of being forced to pass for "normal," which is a theme in the Autistic community as well -- down that road leads repression, down that road leads suicide, down that road leads all manner of other very negative things. Because again, the thinking here is that eye contact is not a skill, it's a virtue. Hand flapping isn't just something that prejudiced people have a problem with, it's a sin. And once again, that has consequences for people.

Now people say in response to that -- and I always believe it's important to accurately reflect the views of my opponents -- "what about Autistic behaviors that cause problems? What about self-injury? What about struggling to communicate? You folks in the Neurodiversity movement just believe in leaving everybody alone, to rot and decay." That's quite frankly not true. The problem is not in trying to address issues like someone struggling to communicate -- anyone who has struggled to communicate, and there are many people in the room who are AAC and FC users,  knows how important it is to empower communication and make it possible. The problem is when we define everything that is Autistic as "bad" and everything that is non-Autistic as "good."

We can pursue communication as good unto itself. We can pursue people not hurting themselves as a good unto itself. There is no reason one has to pursue those things as bad because they are associated with autism. Presumably we possess some form of judgment here, that we don't need that shorthand. But when we adopt the model that says, "Because there are some bad things that happen to Autistic people, autism must be bad," we end up with ridiculous contortions, we end up discouraging hand flapping -- why? because it's something Autistic children do, something Autistic adults do as well. We end up encouraging eye contact -- why? because it's something "normal" people do.

We even end up with more bizarre things -- it's interesting, if you look at early childhood education, sequencing behavior: stacking up blocks by color or size is viewed as a good thing, is viewed as a precursor to higher math skills, and things of that nature. And the only area in which it's not viewed as a good thing is in the autism research literature, where it's viewed as a bad behavior which must be discouraged -- the reasoning being that Autistic children are much more likely to sequence. And once again we get into all these problems which come from a very simple and simplistic binary which defines anything Autistic as bad, and anything which is perceived to be part of this ideal of "normal" as good.

And the question I ask our opponents is, "What are you trying to accomplish that can't be accomplished from the perspective that we're going to be looking for things that are going to improve peoples' lives? What that you're trying to accomplish has to go through the model of making Autistic people normal?" There are Autistic people who work -- they are still Autistic. There are Autistic people who work independently -- they are still Autistic. There are Autistic people who communicate -- still Autistic. There are Autistic people who have relationships and friendships -- still Autistic. Those are goals! Friendships, relationships, work, independent living. But they are goals that we are going to reach in a far more expedited way, in a far more effective way, if we focus our attention on the things we actually want: quality of life, independent living, civil rights, all those other things -- the things we're actually aspiring to, as opposed to using the idea of "normalcy" as a shorthand to mean those things, even when the interventions, treatments, and those other things that are aimed at enforcing normalcy are not actually good measures, good means of accomplishing those shared goals around quality of life.

If we re-imagine the way we think about autism, the way we define progress, the way we define our objectives -- both with regards to individuals and with regards to the larger community, and policy and research questions within which individuals operate -- I believe both the self-advocate and the parent community can be better served. At the end of the day, we want the same things. At the end of the day, we're hoping for the same better world. It's just that we who actually live this life, we who actually experience these challenges, are in a position to tell the world that there is not just one way to accomplish them. 

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