The Trouble with Long Shots ...

... is that they so rarely hit their targets.

The long shot to which I refer is John Elder Robison's three-year effort to nudge Autism Speaks's research funding priorities toward therapies that help make autistic people's lives easier, as opposed to determining causes and finding ways to prevent more autistic people from being born.

From a 2010 blog post explaining his reasons for accepting the position:

One of my principal areas of concern will be identifying and funding studies that have high likelihood of improving the lives of autistic people today. Research into causes of autism is important, but I want to see more research aimed at remediation of specific components of autistic disability. The TMS [i.e., transcranial magnetic stimulation] work I'm involved in at Harvard/Beth Israel is a good example of work that can lead to better lives for today's autistic population. 

... 

In addition to my work on the science side, I hope to work more closely with the Wrights and Autism Speaks management to help the organization appreciate the needs of autistic people at all points on the spectrum. That's going to be a real challenge because the views of different people on the spectrum are so widely divergent. 

When the Wrights founded Autism Speaks their focus was on children with significant autistic disability. While that remains important, I hope to broaden the organization's focus to welcome and support less impaired people too. I also want to bring some attention to the plight of adults on the spectrum, many of whom grew up with no awareness of autism at all.  

... and another one going into greater detail about his role on the advisory board and how he hoped to make use of it:

... [T]he [research] proposals that made it through the initial screening reach the review board - the place I serve. Proposals are dealt out to members of the board for a first ranking. Much of the time, three reviewers read each proposal. They may be assigned randomly, or they may be dealt out by expertise. However they are allocated, if there are 30 of us on the board, and there are 100 proposals to deal with, we will each be assigned ten.


We will rate the proposals we are given in several areas, like the impact on the community, how likely the work is to succeed, and whether it's truly new research or a rehash of something already covered. Each area is scored from 1-5, or perhaps 1-7. So a proposal that I (or any of us) rated 4,4,5,5,3 in each of five areas would have a composite score of 4.2. 

The three initial reviewer scores are combined for a total score, and proposals are ranked based on this first pass. At that point, staffers take the funds available for allotment and they see how far down into the ranks the money goes. For example, if we have twenty million dollars to distribute, that might be enough to fund the top third of the applications.

Given that, the agency takes all the proposals in the top third, plus a cut of the next tier, for final review. That's where we all discuss them, and we all vote. And that's where any one voice can matter a lot. I'll give you an example. Let's say a piece of research involves social skills training, and most of the scientists give it a 3 for importance. But I feel that it's a really important proposal, based on my life experience, so I speak up. By doing so, I cause people around the room to rethink the proposal's importance, and a number of people move their score from 3 to 4 or even 5. The result: that proposal's average score rises, which moves it from "not good enough to fund" into the "recommended for funding" category.

Now, following the publication of this op-ed article from Autism Speaks founder Suzanne Wright on the organization's website, Robison has resigned from both of the boards he had been sitting on.

Here is his post explaining why he did that.

I care about this, and am saddened that Robison feels like he hasn't been heard, even though I pretty much consider Autism Speaks to be the enemy, because I did have a sliver of hope that he could shift their priorities a little, and through them get funding for projects that might help people, and that might not get any funding otherwise*. (It's not like the NIH or NSF are drowning in money these days ...)

Now that he's stepped down, that sliver of hope is gone. I have no reason to extend even the slightest, most infinitesimal modicum of goodwill to Autism Speaks. 

It had already been my practice to discourage people who wanted to Do Something for Autism from donating to them and recommending other charitable organizations that do more for actual autistic people, so I guess I will be doing more of that! I will also be contacting my Representative and Senators and telling them that Autism Speaks doesn't speak for most autistic people, and that they should not think that allocating money to them will make any difference to autistic people or their families.

Once again, here is a list** of autism-related charities*** I consider more worthwhile than Autism Speaks:

AAPD - American Association of People with Disabilities

AASPIRE - Academic Autistic Spectrum Partnership in Research and Education

ADAPT

ASAN - Autistic Self Advocacy Network

Autistics.org

AWN - Autism Women's Network

DREDF - Disability Rights Education and Defense Fund

Easter Seals

National Disability Leadership Alliance

National Disability Rights Network

NOEWAIT - National Organization to End the WAITlists

Not Dead Yet

SABE - Self Advocates Becoming Empowered

TAAP - The Autism Acceptance Project

TASH

The National Council on Independent Living

*They still would have been the enemy, and I still would've encouraged people not to donate to them, and my ideal scenario would still have been that they should dissolve, and clear the field for less harmful organizations. But people can work on that objective while other people --- like Robison --- work on others, like getting more of their grant money to projects that might help improve quality of life for some autistic people! We can walk and chew gum at the same time. (Well, metaphorically if not literally. I cannot literally walk and eat something at the same time, but I can simultaneously favor more radical long-term strategies and short-term harm-reduction measures. My mind is nimbler than my body.)

**There are going to be more names on this list than there were the last time I did this, because I've found out about more organizations.

***Includes cross-disability organizations

Also

From Sarah's Tumblr:

In light of the recent John Elder Robison interview clusterfuck, I’ve been thinking about something that has long bothered me: the idea that autism—“Asperger’s autism in particular—is so frequently described as “coming across as a jerk without meaning to.”

I don’t doubt that some autistics do experience this, but that’s never been my reality. For me social impairments aren’t as much of a big deal as other autism-related impairments, and of the social issues that I have, I wouldn’t put “being seen as a jerk” anywhere near the top of the list. In fact, on the occasions that I do have this problem, it’s for completely different reasons than what is commonly described. Sometimes I do, yes, act jerky and even cruel—but that’s usually when I’m in the middle of a meltdown or on the verge of one. This is quite different from what JER and a lot of other autism-related material describes. (Of course in JER’s case, I’m pretty sure that a big reason why he is often perceived as a jerk is because he is one. His first book makes this abundantly clear. Hey, autistics can be not-nice people, too.) I’ve said some pretty blunt and possibly inappropriate things, to be sure, but the people who I interact with on a regular basis know that I’m no jerk. That I am in fact a generally nice and caring person. The closest thing that’s come to this was my family “jokingly” telling me that I cared more about the cats than them. But that wasn’t my doing anything possibly jerky so much as a complete misinterpretation of my need for a lot of alone time.

Obviously my experience isn’t representative of all autistics any more than JER’s is. But I’ve met a lot of autistic people, very few of whom can be fairly described as jerks by any definition. And I would be very surprised if a significant number of autistic people listed “being mistakenly seen as a jerk” as one of their top problems. Yet so much of the literature treats this as a central defining feature of being on the spectrum! It’s befuddling, and most likely the product of incompetent, allistic-centric researchers such as SBC fixating—yes, fixating—on the social aspects of autistic impairments to the exclusion of all else.

I meant to include this in my last post, but there got to be so much just about the bit I quoted from that interview that I figured I'd save it for another post.

Anyway, I've been similarly unaffected (well, most of the time --- I can't say that no one has *ever* assumed I was being rude when I was actually having difficulties stemming from autism, like incipient overload, language-processing issues, or whatever, but it is not really a recurring theme in my life) by this thing where people think I must be very rude, or mean, or aloof, because of the way I speak (or don't speak) or act. Some of this may just be because I am a young woman, rather than a middle-aged man, and candor in a young woman might be read as "innocent" or "naive" rather than "rude" --- because I do share some things with Robison, and unthinking candor is one of them --- but it's also because I have other things going on that just social cluelessness. (See: language-processing issues, uneven ability to produce speech, sensory overload, etc.)

Those other things usually mean I get read as stupid, not as a jerk. (Again, that's not to say I absolutely never get read as a jerk --- I might sometimes! That's just not what always happens, or what happens most of the time).

Apart from sharing that, my other motivation in reposting this was to say I very much agree with Sarah's notion that (many) autism researchers zero in on our social difficulties, to the exclusion of other aspects of being autistic that have more of an impact on what we're able to do, and what our lives are like, and how our particular cognitive styles work.

John Elder Robison Disappoints in Interview

John Elder Robison may be the second-most-famous autistic person alive now --- Temple Grandin, of course, being the most famous --- and, as such, is treated as something of an authority on autism. He sits on a 30-person scientific review board at Autism Speaks, which makes recommendations about which research to fund, and he is also a bestselling author (Look Me in the Eye, and now Be Different) and speaker.

(In this interview with NeuroTribes blogger Steve Silberman, Robison says that part of the reason he wrote his second book was because people kept asking him how he was able to be successful, and whether he had any advice or wisdom to impart that would help other autistic people achieve similar success).

So I was quite disappointed when I came to this part of the interview:

Silberman: Are there any ways that society could be reformed to make it a more comfortable and supportive place for autistic adults?

Robison: I don't think that's a realistic question, Steve. We represent one percent of the population. Asking what 99 percent of the world should do to make it a better place for that one-percent member --- that's verging on science fiction and fantasy. People who get into that way of thinking become militant about demanding their rights and thinking about what the world owes them. Frankly, I don't think the world perceives that they owe us one single thing.

If you're a guy with severe autistic disability and you can't talk, you cry out for compassion by your very existence. It's obvious when people look at you and listen to you. If you're a person in a wheelchair, nobody can reasonably argue that you should just get your ass across the street. But when you're a person like me and your disability is principally with social functioning, and at the same time you have good language skills, people are going to dismiss you as a jerk if you don't learn to fit in. That's the hard truth. To suggest that someone like me should ask for accommodations is, in my opinion, setting that person up for failure. Because when your language skills are good, there's no external sign of disability, and you act weird --- and then you make demands on people for how they ought to change to accept you? That's a non-starter.

It looks like Steve Silberman was also taken aback by this answer, because he actually starts arguing with Robison about it for a while:

Silberman: But other minority groups have demanded reasonable accommodation from society, such as laws against discrimination in the workplace. Black folks did it by launching the civil rights movement, many other disabled groups have done so, and gay people --- like your brother Augusten [Burroughs] --- have done it, too.

Robison: The race thing is completely different. You can look at someone and right away know if they're black or white. There's been a huge gay rights movement, but look at what there is already for gay accommodation. I don't think there was ever an issue of people refusing to hire gay people in most workplaces.

Silberman: Well, that isn't true. I'm not trying to argue with you ---

Robison: In the autism world, people look at your behavior and say, "He's acting like a jerk, I'm gonna treat him like a jerk." If you're a gay guy and you're acting like a jerk, people think you're a jerk; but if you're a gay guy and you're nice, people think, "He's a nice guy."

Silberman: Not always, but I hear what you're saying. [changes subject]

I think Robison misses the point about a lot of things in this exchange. When he's trying to explain how the neurodiversity movement is fundamentally different from, and less reasonable than, past liberation/civil-rights movements, he greatly overstates mainstream society's willingness to do what those past movements asked of it.

He also overstates the degree to which racism and homophobia aren't still entrenched in mainstream (white, straight) society today. Obviously things are better than they were, but Robison is flatly wrong when he says that today, a gay man can be confident that he'll always be judged according to his personal merits, and not by the fact that he's gay (or a black man by the color of his skin). He's also flatly wrong when he says that gay people were never barred from any form of employment because of their sexuality. (What does he think "Don't Ask, Don't Tell" refers to, one wonders?)

I also have serious problems with this:

If you're a guy with severe autistic disability ... you cry out for compassion by your very existence.

The poetry of this image aside, I find its implications --- that autistic people (or other people with severe disabilities, however we're defining "severity" today) don't need any more rights, legal protections, etc., because other people will automatically take pity on them and give them whatever they need --- disturbing.

They disturb me because I know differently. And it makes me angry, given the extent to which abuse and neglect by caregivers is A HUGE PROBLEM for people with disabilities, to hear that we cannot possibly be abused, neglected, impoverished, or anything else bad because our mere existence appeals so urgently to the better angels of human nature.

Anyway, apart from that, it also bothers me that his argument is essentially, "But it's too hard to change society! We can't ask *THAT* of them!!" and then, when faced with examples of other minority groups who've done just that, and achieved some success, he seems to think ... I don't know what. That society has already adopted those reforms, and since it hasn't adopted the reforms neurodiversity/disability activists are pushing for, that those reforms must be less reasonable than the reforms already (grudgingly, laboriously, slowly, incompletely) adopted?

There's also the fact that his whole "the 99 percent cannot be expected to change the way they do things for the benefit of the 1 percent" essentially amounts to, The Devil take the hindmost! Which is pretty much the way we do things here in Capitalismland, but which I think is a really horrible way to run a society. Horrible for everyone, not just autistic people.

Which brings to mind the last big, philosophical thing that bothered me about his answer. He assumes that the reforms neurodiversity activists want would only be beneficial to autistic people, and would either do nothing for, or actively inconvenience, everyone else. I don't think that would necessarily be the case; I think lots of people would benefit from a more flexible, accommodating workplace or an improved system of caregiving or more walkable communities or whatever else. People who aren't disabled might be able to stay afloat in the current social/economic arrangement; that by no means implies that they're thriving under it, or that their lives couldn't also be improved by tweaking said arrangement. After all, "society" isn't this immutable thing like the laws of gravity or thermodynamics; it's something people make, and can remake as needed.