Saturday, August 29, 2015

Liz Feld and Autism Speaks: No, Really, You Need to Listen

Shannon Des Roches Rosa
www.thinkingautismguide.com

Liz Feld may be the President of Autism Speaks, but her recent A Call for Unity letter is not exactly presidential
. Unless your idea of a good President is someone unable to take clues from the majority of the people they are supposed to be leading and serving. Ms. Feld's letter is as tone-deaf and wrongheaded as then-President George W. Bush feeling insulted by Kanye West's post-Katrina remarks that Bush "doesn't care about Black people" -- instead of asking himself why Kanye was so outraged.

Feld's letter is an equally clueless, defensive, and dismissive response to NeuroTribes author Steve Silberman's Los Angeles Times op ed Autism Speaks Needs to Do a Lot More Listening, in which Silberman critiques Autism Speaks outright on its leadership, community outreach, and research investment practices.

Feld rarely addresses Silberman's points directly (she doesn't even link to his article), choosing instead to writing a promotional piece about all the good she thinks her organization does -- based on its own yardsticks. And she completely ignores Silberman's observations about exclusion and representation, such as, "Imagine a world in which the leadership of the NAACP was all-white; now consider that not a single autistic person serves on the board of Autism Speaks. This absence makes itself felt."

I am the parent of high-support autistic teenager. And this is what I believe being a supporter of, a loved one to, or a reporter on a community one does not belong to requires: a specific humility mandate to listen to the people in that community, and put them and their concerns first. That doesn't mean ignoring the concerns of parents, supporters, or organization heads. But it does mean letting autistic people themselves lead and guide autism efforts.

Which makes it doubly insulting when Feld goes on to prove Silberman's statement that "The people most often sidelined or excluded from the public discussion are autistic themselves. It is often assumed that the experts, or the parents of people on the autism spectrum, will do the talking in their stead." Feld's Call for Unity completely omits autistic perspectives, while including and prioritizing parents' voices and talking about the importance of "families" -- as though individual autistic adults are incapable of having a real opinion.

And that's the real problem. As autistic activist and parent Lei Wiley-Mydske tells Feld in the A Call for Unity comments:
"It's not just Steve Silberman's point of view. Actually Autistic people have been saying this for YEARS about your organization. Nice of you to finally listen when it's a non Autistic person speaking. It just shows how much you continue to disrespect us and why there can never be unity as long as you continue to erase our voices."
Other autistic critics of Autism Speaks, like M. Kelter, point out that this lack of unity is actually a positive sign, for autistic people:
"I like division. I like what it represents. In the context of discussions about autism, division means the old [negative] view has some competition. And yes, that's going to make some people uncomfortable, but that's okay. You don't need to be comfortable.
"You just need to make space at the table."
Admitting that one has made -- and can learn from -- misfires is not easy. It takes a lot of that previously mentioned humility. But if Feld truly wants to be of service to her community, I'd advise her take a cue from Cara Liebowitz on learning from one's ableist (disabilty-discriminatory) mistakes:
"...if you screw up, well, it happens to the best of us. Just apologize, ask what you can do to make it right, and make a conscious effort not to make that mistake again in the future."
I'm not going to hold my breath, though. Autism Speaks has a lot of apologizing to do. A lot. So until they start listening -- something they've shown very little ability to do -- the criticism will continue. 

A photo posted by Boycott Autism Speaks (@boycott_as) on
[Image: Dark textured background. Light text reads:
"Autism Speaks wants "unity" without addressing a single criticism of their organization by actually Autistic people.
Unity can only come when Autistic voices are centered, when Autistic lives are valued and when Autistic people are treated with respect and dignity.
Autism Speaks, if you want unity, that's where you start.
We're waiting......
‪#‎BoycottAutismSpeaks‬ facebook.com/boycottautismspeaksnow "]

Tuesday, August 25, 2015

NeuroTribes Is Finally Here: Celebrating With a Review, and a Giveaway

Shannon Des Roches Rosa 
www.Squidalicious.com
 
Steve Silberman and Leo Rosa
[image: a white man with short salt-and
pepper hair, and a white teen boy with short
curly brown hair, sitting on a green bench.]
Steve Silberman's long-awaited book NeuroTribes: The Legacy of Autism and the Future of Neurodiversity arrives in bookstores today. Finally! If you have any interest in autism whatsoever, then trust me, you need this book. (No, really. We are so excited that NeuroTribes exists that we're hosting a giveaway, details below.)

I'll be upfront with my disclosure: When Silberman described his intention to write a book that "upends conventional thinking about autism and suggests a broader model for acceptance, understanding, and full participation in society for people who think differently," my family and I agreed (and were honored) to be included in the project.

But I would recommend NeuroTribes regardless; I've been pining for an autism book this information-rich, this compassionate, this beautifully written, this revelatory, and this necessary, ever since my son was diagnosed with autism eleven years ago. And I hope you will agree.

I spoke with Mr. Silberman earlier this month, about some of the many topics and people featured in NeuroTribes -- including the concept of neurodiversity, the myth of an autism "epidemic," the difficulty of condensing five years of research into a single book, and why autistic leadership matters. The bulk of that interview is also up today, at BlogHer. The rest of our discussion follows.


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Shannon Rosa: You uncovered disturbing scenarios from Ivar Lovaas's work with autistic children at UCLA, while he was developing Applied Behavioral Analysis as a "treatment" for autism. How did he get away with behaving so badly towards those children, according to your research?

Steve Silberman: The outrageous cruelty of Ivar Lovaas to the children in his clinic in the 1960s was unforgivable, but it was also a very complex thing. What isn’t a matter of debate is how monstrous, barbaric, and inhumane some of his methods were. He would give pre-schoolers painful electric shocks to encourage them to hug the experimenters, and to punish them for exhibiting behavior like echolalia, which turns out to be a distinctively autistic way of learning language, as Barry Prizant explains in his fabulous new book for parents and clinicians, Uniquely Human.

We should be quite blunt: Lovaas was engaging in torture, by any standard.

But it’s also crucial to understand how he excused his own behavior, which was that he earnestly believed he was saving these children from an even worse fate: life-long institutionalization. He would see children who had chewed through their own fingers in places like Camarillo State Hospital in California. The problem was that he didn’t ask if this self-injurious behavior was the natural course of autism, or if it was the children’s response to being put in brutal institutions, where they were subject to isolation, restraint, abuse by the staff and other residents, and so on.

We have to remember that Leo Kanner’s recommended course of treatment for autistic children was institutionalization, to remove them from the family environment that he catastrophically blamed for causing their autism. So, with very few exceptions like Temple Grandin -- who escaped that horrible fate because her mother Eustacia refused to put her in a place like Camarillo, and because she was diagnosed with “minimal brain damage” rather than autism -- two generations of profoundly disabled autistic kids ended up on psych wards, in straitjackets, being beaten by the staff and drugged out of their minds. Compared to a lifetime of that, Lovaas must have thought, what are a few electric shocks?

This is why it’s so important to understand the history that I tried to bring to light in NeuroTribes -- to understand both how inhumane some of Lovaas’ techniques were, and what he was reacting to.

SR: Without giving too much away: in researching the history of the Oscar-winning film Rain Main and how it fits into our cultural conception of autism, what are one or two discoveries that surprised you?

SS: The main thing that surprised me when researching Rain Man was realizing that Dustin Hoffman’s character of Raymond Babbitt was the first autistic adult that most people in the world had ever seen. Nowadays, it’s easy to trash his character as an autistic stereotype -- the savant skills, the goofy catchphrases, and so on. But what the people saying those things don’t realize is that there were no autistic adults in mainstream media up to that point, with very rare exceptions.

It’s not like now, where every hip new TV series seems to have to have an “Aspie” character. Autistic adults were virtually invisible to the culture -- even to most clinicians! -- because the diagnosis was not made available to adults on a mass scale until the 1990s. Even Temple Grandin, when she first started making the rounds of autism conferences, billed herself as “recovered from autism” because autism was still considered to be a disorder of the first years of life, as Leo Kanner had originally framed it.

But another really important thing to understand about Rain Man is that it could have been better, because at the end, Raymond has to go back to the institution, because he is clearly unable to survive outside of it. Yet the real-life autistic people that Raymond was based on -- people like Joe Sullivan and Peter Guthrie -- were living in the community with the help of their supportive parents. They represented the real natural course of autism: autism minus the decades of brutality and degradation of being shoved away, out of sight, in state hospitals. And they’re both still doing fine, though obviously they’re still very autistic. Peter continues to work in a library at Princeton University, as he has for decades.

So I ended up having great respect for what screenwriter Barry Morrow and Dustin Hoffman did with Rain Man, which was to make autism visible to the lay public on a global scale for the first time in history. With the little caveat that it could have been better.

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GIVEAWAY

Update:
The winners are Erin, Kacy, and Mass der Dinge! Please write to us at thinkingautism at gmail with your mailing address so we can get copies of the book to you. Winners selected using Random.org.

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The publisher of NeuroTribes is letting us give away three hard copies of the book. If you would like to be considered, please leave a comment below, describing why you want your own copy. We'll use Random.org to select three winners on the morning of Friday, August 28th (Pacific Time).