Sunday, October 11, 2015

Interviewing folks about NeuroTribes

This ableist article titled “Can We Please Stop Whitewashing Autism” (CN: Ableism, functioning labels, autism as tragedy narrative) is about NeuroTribes.

It’s not, as the title would suggest, about the real erasure autistic PoC face. The author is more concerned that a journalist is trying to treat autism with more respect.

It’s also by someone who has not even *read NeuroTribes with an open mind*. The author of the article has also blocked the author of NeuroTribes from a different thread. 

I'm going to to interview some people: M.o. Kelter from Invisible Strings, Chavisory, and Shannon Rosa of TPGA.

Q1: What is your reaction to the backlash articles against NeuroTribes, in general?

M.o. Kelter: Neurotribes covers so much territory that there is room for constructive criticism. And I think Steve Silberman has been more than willing to listen to constructive criticism. People have discussed stories and histories that they feel could been focused on more and I think all of that can be part of a healthy discussion. So, I would separate fair criticism from what I see as distorted, unfair criticism. For example, when people say “Neurotribes presents autism as this wonderful thing” means they didn't read the book. Neurotribes describes a huge, diverse range of autistic experiences. From what I can tell, most of the backlash falls into this second category, where folks are attacking the book for claims it never makes.

Shannon Rosa: Eye rolling. I've yet to see a statement from an anti-neurodiversity perspective that can't be countered by direct quotes from the book. 

I think people are upset by the success of Silberman's campaign for accepting and understanding autistic people like my son and my friends, and his rejection of the usual "brave" horror show accounts. Heavens forbid anyone attempt to derail the decades of abuse and stigma suffered by autistic people (and their families)!

Chavisory: I find it pretty predictable, honestly. Steve's research is groundbreaking, but people who are really, really sunk in the line of reasoning that autism is a terrible affliction were always going to find it all too easy to dismiss his findings as biased or wishy-washy...

Q2: So do you think the backlash articles are absolutely strawmanning the issue that he didn't include accounts of what “real autism” is like? In quotes, because all autistic people... are autistic.

Mo. Kelter: Definitely. In most of the cases I've seen, it's a willful, intentional straw man fallacy. The real fear that's motivating some of the backlash is that people might read Neurotribes and start thinking of autistics as human beings. Certain camps just don't want this. But their criticism, that “real” autism is left out: it ignores the actual content of the book. He includes a variety of experiences.

Shannon Rosa: : Well, yes. Those accusations are B.S.-- the very first autistic person mentioned in the book is a girl with "severe" autism, and she's far from the only high-support autistic person featured. Full disclosure: my family's story is included, and I find it perplexing that anyone who read about my son would question the reality of his autism.

Chavisory: Yes, for the most part. He wrote extensively about the first people diagnosed with autism in the US--Kanner's patients are literally the prototypical cases of "Kanner autism," it's just that they've been grossly misrepresented by history and frankly, by people with their own stakes in believing autism to be the horrific affliction they believe it to be. He profiled people like Leo Rosa, who as his mother reiterates pretty much constantly, is minimally verbal, has a lot of emotional regulation issues, and requires 24/7 one on one support. Even to take an obvious genius like Henry Cavendish, I hope that it was very clear from Steve's descriptions of his life just how debilitated he was by it--like, he had a second staircase built in his house just to be able to doubly avoid being seen by anyone else ever? That's an *extreme* level of exposure anxiety and aversion to human contact, and obviously it had a profound effect on how Cavendish had to live his life.

Q3: How would you address claims that he's using neurodiversity as a tool to make things all glossy? Is that also a strawman argument?

M.o. Kelter: It's an argument that cherry picks a very, very small portion of the book and then blows it out of proportion. The book includes a few profiles of autistic savants. this too glossy? No. What's happening here is that people are shooting the messenger. Silberman is covering a huge swathe of history...and until recently? Very, very few autistic experiences were recorded. One reason Neurotribes includes a few autistic savants is because those were the only stories that were recorded for a long time. Autistics with communication challenges, or with greater self-care challenges, and so on...they were institutionalized, often killed, always hidden away. Neurotribes is not concealing autistic stories. Society did that. It still does that. What the book tries to do is look at that history...the history of how autistics were defined and treated and prevented from being part of the society around them. It's a messenger about autism history, not the mechanism suppressing that history. I think some people are just very reluctant to see the ugly truth about why autistic stories were completely absent for so long.

Shannon Rosa: I would say those claims are being delivered by people who are preemptively prejudiced, don't understand neurodiversity at all, hate-read the book, and/or somehow failed to notice anything but the "strange gift" section of this passage:

"Whatever autism is, it is not a unique product of modern civilization. It is a strange gift from our deep past, passed down through millions of years of evolution.Neurodiversity advocates propose that instead of viewing this gift as an error of nature—a puzzle to be solved and eliminated with techniques like prenatal testing and selective abortion—society should regard it as a valuable part of humanity’s genetic legacy, while ameliorating the aspects of autism that can be profoundly disabling without adequate forms of support."

Chavisory: Mostly I think the people making that claim either have never understood neurodiversity or are deliberately misrepresenting it. More the former than the latter...I just mainly think that a ton of these people *cannot* get their heads around the concept that many human abilities and inabilities are two sides of the same coin, or that autism, which *looks* only like a severe set of inabilities to them, has another side that might not be apparent to someone determined not to see it.

Q4: What do you think the message of NeuroTribes is? What it's trying to say about autism? How do you think it does with encompassing a variety of autistic people?

M.o. Kelter: For me, the message is: autism has always been here. We've always been afraid of it, tried to hide it. And it's time to see autistics as human beings, not as “diseased”, “tragic” or part of an “epidemic”. I wouldn't even say most of the book has a “message”, since it's not about Silberman's is primarily a history of how autism was researched and defined over many decades...and that history speaks for itself, in a lot of ways. Someone can sincerely disagree with Silberman's personal take on any given issue...but you can't disagree with facts. And most of the book is a historical overview, not an opinion piece.

Shannon Rosa: I doubt Silberman would phrase it quite this way, but in my opinion NeuroTribes is a history of how an entire innocent population has historically and systematically been [expletive] over, maltreated, and ostracized, how we can stop doing that, and how we can start treating autistic people like human beings, whatever their abilities or needs.

Chavisory: I think NeuroTribes primarily succeeds at relating how the story of autism, and thus our perceptions of autistic people, has been so distorted by history, by bad research, by self-serving researchers, by the ease with which various popular self-appointed experts have been able to use autistic people as a projection screen for whatever their own fears and obsessions were. To say that it establishes that autism has been historically misrepresented is an understatement.
I do wish that it had represented a wider variety of autistic people...but not in the ways that most people are complaining about. And I do understand that Silberman was working under editorial constraints that probably made inclusion of everything *he* wanted to include difficult.
But I would've liked to have seen more representation of what was happening to undiagnosed autistic people prior to the 1990's who *weren't* in the sciences or tech sector. Rural autistic people, autistic people in the arts and humanities, autistic people who were misdiagnosed and/or institutionalized etc., because the expanded diagnostic criteria actually included *them* for the first time as well, autistic people of color....

But like, there's just not a ton of material openly available about these people, because of the distortion that Silberman is writing about.

Q5: What are some things you hope for moving forward from NeuroTribes?

M.o. Kelter: For too long, the window of “what can we discuss when we discuss autism?” has been skewed in this very negative, inaccurate direction. People were focused on conspiracy theories and vaccine nonsense, for example. My hope is that Neurotribes pushes that window in a new, better direction. Hopefully we can talk about, in a bigger public sphere, autistic lives and experiences (and this means the full range of autistic experiences, with no stories left out or suppressed), so that people are learning to see these issues in a more constructive, informed way.

Shannon Rosa: I hope it inspires well-funded philanthropists to work on items to improve the day-to-day quality of life for autistic people, things like affordable alternative communication strategies and equipment, or gear for coping with sensory issues (e.g., inexpensive noise canceling headphones in every classroom). 

I hope it inspires more autism professionals to apply neurodiversity principles to their work.

I hope it allows parents to love their autistic kids more freely.

And I hope it helps autistic people feel empowered, vindicated, rightfully angry, visible, and connected.

Chavisory: I would really hope that more and more of the general reading public would start looking towards autistic people to understand our stories and who we are. I hope that NeuroTribes will make people who are still learning, or don't know much at all about autism, or still questioning what they think, feel compelled to weigh accounts by autistic people against the professional misconceptions. Like, NeuroTribes will probably be the first thing that some people ever read about autism, and that makes me really happy to think about.

I hope that more people will think seriously about whether, given the known contributions of autistic people to human culture, whether erasing us, and our cognitive diversity, from the future is really what we should be striving to do.

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