ASAN says: Don't Light It Up Blue

@jonlovett @chrislhayes @autismspeaks You might read @autselfadvocacy statement on "Light it up Blue," and see why many autistic folks are furious. https://t.co/EXQDJ0HA2K

— David M. Perry (@Lollardfish) April 3, 2017

I am struck by how often the conventional wisdom of the disability rights movement does not extend into broader cultural areas, including quite progressive ones. Take yesterday, when  Chris Hayes, shared by Jon Lovett, admitted surprise that Trump would tweet about Lighting up the White House Blue, because it seemed like a decent thing to do.

But it's not. Autism Speaks is not a right-wing organization, but it an organization that has long linked "awareness" to the eugenic pursuit of "cures." Bob Wright, its millionaire founder, was an early Trump backer, who presumably used his influence to get the blue lights at the White House. Trump is an anti-vaxxer. Autism Speaks had a long history of anti-vax fearmongering before they finally rejected the myth (causing bitter division within the org, by report). Lighting the White House blue is a symptom of Trump's destructive presidency, not a counter-indicator.

Insiders know things. Outsiders don't. Figuring out how to change that is a major part of why I became a journalist, trying to shift inside voices to new audiences. Sometimes it works.

A couple of years ago I wrote in the New York Times about how I told my daughter she couldn't go to an ice cream fundraiser for Autism Speaks, then discovered that the person behind it didn't know about the problems with AS. I wrote it as a gentle introduction to new audiences about the problems of the organization, and share it again here, in case it's useful.

The self-advocate community is winning the autism culture wars, but progress is never linear. Autism Speaks now has autistic board members and is slowly shifting some of its rhetoric. I worry that in this regard, as in so many, the Trump presidency will push us the wrong way.

Steve Silberman wins everything! (Or, how paradigms change).

Steve Silberman, author of Neurotribes, has won the Samuel Johnson prize for non-fiction, a prestigious U.K. award. It's the latest of many prizes, glowing reviews, and appearances high on best-seller lists for this magnificent work on the history and meaning of autism. It directly challenges all the pity and tragedy narratives, without erasing lived experiences of difficulty by autistic people or family members. It's deeply rooted in the social model of disability, emphasizing the ways in which people become disabled by a society geared only towards the typical. It's widespread readership and visibility has the potential to shake how people only casually linked to the disability world perceive autism, perhaps shifting the flow of dollars and celebrity support away from "cures" to acceptance and accommodation.

I read the book this summer and had planned to review it, but instead got caught up in the Autism Speaks tangle, and interviewed Silberman for this piece, and by the time my writing log had cleared, the book was well launched. It's an amazing piece of research and writing, not the least because Silberman negotiates a challenge that I face as well: He's not autistic.

Neurotribes is a masterful work of allyship. Silberman is thoughtful and intentional in terms of how he represents autistic people, and I know he holds himself accountable to the group he's trying to represent. Autism Speaks is worried, and while I've heard plenty of grumbling that the mega-charity only cares because a famous neurotypical author has weighed in, none of that grumbling has been directed at Silberman (to my knowledge. I'm sure there are exceptions. There are always exceptions).

A book like this can have enormous impact on a paradigm. It has to come at the right moment, when society is ready for its message. It has to build on years and years of work by people inside the movement. This is a problem. It shouldn't take an elite voice like this to get people to listen, but when you're competing with Autism Speaks and their 60 million dollar a year budget, it's hard to get a counter-message through. Neurotribes is, at least in some circles, providing a hefty counter-weight to the tragedy/epidemic narrative of autism.

Sesame Street and #BoycottAutismSpeaks

In April 2014, Sesame Street announced a partnership with Autism Speaks. Autistic indivduals and their allies quickly organized to push Sesame Street to do better, and not listen solely to a group dedicated to perpetuating the worst stereotypes about autism.

The results are pretty good. From an LA Times article on the process:

Children with autism vary in their traits significantly: some can talk, while others can’t. Many of them are sensitive to noise. Some have trouble keeping eye contact, and many of them experience the world differently, so they’ll touch different objects to explore the sensation of texture. Perhaps because of this range, autism is also extremely controversial. While some organizations, such as Autism Speaks, consider autism a syndrome that calls for research to help mitigate its effects, others, such as the Autism Self-Advocacy Network, simply view autism as an alternative way of expressing oneself.
So by stepping into the fray, and by choosing the traits for one character to represent autism, Sesame Street risked facing backlash.

“Sesame can be a great convener of different interests,” Westin said. “We were able to bring people at opposite ends of the spectrum, pun intended, from Autism Speaks, to the Autism Self-Advocacy Network. Those groups see certain things differently, but what they had in common is they wanted to give families and children tools.” Both groups have released statements supporting the initiative...

Ultimately, after working with these groups and experts from such institutions as the Yale Child Study Center, they decided on these characteristics for Julia: She can talk. She cannot make extensive eye contact. And she flaps her arms when she gets excited. “We chose things we thought would be most helpful and most typical,” Westin said. On top of these markers of autism, Julia is very curious and smart.

 It's good to see that Sesame Street was willing to listen to actually autistic people and create a positive, realistic, autistic muppet.

Autism Speaks - Is Unity Possible?

I have a new piece up at Al Jazeera America this morning on Autism Speaks.

Autism Speaks is the mega-charity of the autism world. Founded in 2005, it has an annual budget of $60 million, is known for its ubiquitous awareness walks and has a handsome array of celebrity backers. In some quarters of the disability rights movement, however, it has long been reviled for silencing and shaming autistic people.

The organization is criticized for the lack of autistic people on its board of directors and among its senior leadership. Its advertising materials also present autism in the worst possible light. One video portrays autism as a terrifying stalker, saying, “I am autism … I know where you live.” Critics claim it spends hardly any money onactually helping autistic people and that it supports abusive therapies. Worst, its mission calls for a possible cure for autism, which for many autistic people is tantamount to a call for genocide.

Autism Speaks disputes all these characterizations, but well defended by its giant piles of money, the mega-charity is usually able to ignore its critics. However, when best-selling author Steve Silberman recently published a high-profile op-ed in the Los Angeles Times criticizing the group, Autism Speaks responded with a call for unity. Could its willingness to engage suggest that it is on its way to becoming a less divisive member of the disability rights movement?

Let's be clear - I am deeply skeptical. In writing this piece, I went to a number of autistic people for comment and quote them in the piece, all of them focusing on similar issues: Center autistic people in senior-leadership, get past this tragedy language, and, as Lydia Brown said, don't just listen to straight white upper class autistics.

That's really what I thought I'd write about. I also got a comment from Shannon Des Roches Rosa, the parent of an autistic teen and senior editor at Thinking Person's Guide to Autism, in order to show that parents' groups can in fact work beautifully with groups run by and for autistic individuals. Because being a parent is complicated and we DO NEED organizations by and for us too, we just can't let those organizations lose sight of bigger issues. Shannon told me:

The Autistic Self-Advocacy Network and other autistic-led orgs are very clear on such community-wide matters: "Nothing About Us Without Us." I don't think there can be unity until AS incorporates autistic leadership, and changes their mission and funding to prioritize autistic-led goals. There's no halfway on anything, for me, until that happens. What I think many people don't understand -- because of AS's dismissal of autisticadvocates as "not like our children" -- is that autistic advocacy incorporates disability understanding and accommodations, and does a better job of prioritizing the needs of autistic people of all ages and their families than AS is doing now. If we got AS's funding and marketing power behind the messages and services autistic people actually need, I think that would naturally create more unity.

You might note that this quote isn't in the piece, and that's because journalism happened. I did my due diligence. I called for comment. And then I followed up when, surprisingly, I got one.

The last time I went to Autism Speaks for a comment, I got a call promising one, and then nothing. I wrote this for the New York Times, and then a certain amount of drama broke through. Autism Speaks contacted my editor, denouncing me, claiming they had left me a voice mail, and demanding their own column. I still don't know if they called the wrong number, if spokesperson A was lying to his boss, VP B to cover himself for not getting back to me, or if VP B was also lying. I'd like to believe in human error (wrong number) than lies, but since Spokesperson A had successfully called before and had my email, I'm not sure.

Mostly, Autism Speaks has a reputation for ignoring critics. As I said in the paragraphs above - with their bankroll, they can afford to ignore us peons. When autistic people criticize them, they say that such high-functioning people are "not like 'our' children," and then use that as another opportunity to demonize autism as stalker.

But still, I reached out to Autism Speaks, and I got an official comment. It said, among other things, that lots of autistic people work for AS. I asked to speak with one, and got put in touch with Kerry Magro.

Magro is a motivational speaker, author and the social media coordinator for Autism Speaks. He has autism. He got involved with Autism Speaks through awareness walks in college, received an internship from them and eventually accepted a fulltime job offer. He would be delighted to see a person with autism on the board, but is unstinting with his praise. “Everything I've seen with Autism Speaks,” he said, “is a lot of embracing individuals with autism.”

Then I asked Magro about whether he needed to be cured. His response revealed a pathway forward:

For a long time, when I was a kid, when I was having speech difficulties, when I was having trouble making friends, when I was having a lot of communication delays, I always wanted supports to help me progress. Autism Speaks’ mission is to help in the lives of people who have autism. Cure — in the way I’ve always seen it — is just being able to give supports to people [so that they] can live the best lives possible whether it be physical, occupational, speech therapy, etc. I hope that we are able to put supports in place to help our kids progress.

Notice how Magro isn’t arguing against Autism Speaks’ mission, but he also isn’t using the language of epidemic. If Autism Speaks isn’t going to listen to its critics, maybe it could learn to listen to its own employees.

Will it happen? I can't say. But Liz Feld is stepping down as president of Autism Speaks, so there's a moment here for change. It won't be radical change. It won't turn AS into the organization that I wish they were. But it's possible.

And here's my closer.

Every movement has its center and its peripheries. It should come as no surprise that the most privileged elements — white, monied, neurotypical — dominate the center of the autism advocacy movement, or that such do-gooders find it difficult to accept as valid any criticism of their efforts. 

As a white, relatively monied (in that I have a nice house and a reliable income), neurotypical man ... I think about this all the time, trying to be a useful member on the periphery.

Autism Speaks and the No True Scotsman Fallacy

I wrote about Autism Speaks a few weeks ago, and my email box has been lively with parents telling me to "check my facts" or sorrowfully wanting correct my ""unsound and terribly flawed" information.

One of the issues with Autism Speaks is that they define Autism as tragedy. Then, when confronted by autistics who are clearly not tragic, they respond, "Well your autism is not like our autism," or "you are not like our children."

Here's an insight, I think. The definition of autism employed by Autism Speaks and its defenders depends on the "No True Scotsman Fallacy." From Wikipedia -

No true Scotsman is an informal fallacy, an ad hoc attempt to retain an unreasoned assertion.[1] When faced with a counterexample to a universal claim ("no Scotsman would do such a thing"), rather than denying the counterexample or rejecting the original claim, this fallacy modifies the subject of the assertion to exclude the specific case or others like it by rhetoric, without reference to any specific objective rule ("no true Scotsman would do such a thing").[2]

Person A: "No Scotsman puts sugar on his porridge."
Person B: "But my uncle Angus likes sugar with his porridge."
Person A: "Ah yes, but no true Scotsman puts sugar on his porridge."

That's how Autism Speaks deals with autistic people.

AS says: - People with autism can't ...
Autistic person says: I can!
AS says: No true person with autism can ...

It allows them to dismiss autistic critics as not relevant or not the people they are working to "save."

There are, of course, parents who are struggling, but lots of parent groups recognize that the diversity of the autistic spectrum is a strength, a way to build a movement, rather than a threat to fundraising based on sorrow.