Friday, November 15, 2013

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

3 comments:

John Elder Robison said...

I was first approached by Marc Sirkin, who is a progressive thinker who agreed with many of the ideas I espouse. He was surrounded by a number of bright young staffers who shared his progressive ideas. However, starting last year, Marc and those staffers all moved on to other jobs.

Then, when this essay from Mrs Wright was published, I realized the top leadership had never changed their thinking. I had never reached her at all. The people I had interacted with and influenced were lower level folks. Seeing that, I realized my efforts at change were wasted. That is why I summarily quit.

Anonymous said...

BTW here's a kid with autism defying both stereotypes about autism and stereotypes about the needy: http://boston.com/news/local/massachusetts/2014/01/05/north-adams-autistic-boy-generous-the-needy/NeeuwzPhLWdAYjQMvdFfCK/story.html

Brynn Elizabeth said...

Hello Lindsay -

I'm sorry to post this as a comment, but (unfortunately) I have no idea how to send a private message!

So, I am writing my college senior thesis on the perspectives of queer (and/or LGBTQIA+) autists around gender, sex, and sexuality- in order to expand on feminist/queer theory through an autistic lens; one which is inclusive of intersectionality, neurodiversity, and disability rights.

I have (admittedly) already cited and quoted you many times - and finally realized I should at least try to reach out to you personally! I would love to ask for your insight on a couple specific topics concerning autism and identity, and I promise it will take little effort on your part while being a major help to me!

If you are even slightly curious, have questions, or want further clarification on my project, I would be more than happy to go into detail!

You can reach me whenever at:
elizabethbrynn@gmail.com

Thank you so much!

-Brynn

(Also, if there are any other queer autists out there who would like to share their stories, feel free to email me as well! The more voices the better!)