Monday, December 7, 2015

Is Change Coming at Autism Speaks?

Today’s news that autists Stephen Shore and Valerie Paradiz have joined the Autism Speaks Board of Directors came as a surprise to many.  The announcement follows on the heels of other big news from that organization:
  • Mr. Wright has stepped down as chairman and resigned from the board;
  • Mrs. Wright has stepped back from the organization after a cancer diagnosis;
  • President Liz Feld has announced she will be leaving soon;
  • Chief Science Officer Rob Ring has announced his resignation.


 It’s possible that a new day is about to dawn for the largest and most controversial autism organization.  For the first time, they have put actual autistic people in positions of power.  They may take more positive steps when the top management is replaced (time will tell.) 

I certainly hope the organization can change its focus to one that is more constructive, and less demeaning to autistics.  I hope we’ve seen the last of the ugly missives like “I am Autism,” Suzanne Wright’s offensive 2013 editorials, and the suggestion that autistic people are somehow MISSING (we’re not.)  They’ve got a powerful PR machine.  Maybe they can use it to say the right things, for a change. 

It’s harder to raise money when there are no villains and demons, but it can be done.  Will they rise to this challenge, or fall back on the old ways? 

I’m not an insider, so I have no special knowledge, but I have some concerns about the board and some big donors.  In the past, a significant amount of Autism Speaks funding came from people with anti-vaccine agendas, and followers of fringe or discredited science.  How much influence do those people hold today?  I don’t know, but it worries me in light of their history.

It also concerns me that the volunteer base is so heavily dominated by parents. That’s really what the group is: AUTISM PARENTS.  Can they embrace actual autistics to truly begin to speak for the community?  There are a few autistic volunteers there now, and that’s a good sign.

After I wrote this, several people wrote me privately to remark on the role of parents.  I've edited my post to add the following, to clarify that my words were not anti parent; simply a recognition that the actual autistics come first in an autism advocacy group.  An autism parent group, on the other hand, is the opposite.

Autism Speaks has always portrayed itself as the former while effectively being the latter.


With those words, I don't want to make parents out as demons or villains. They have made very real contributions to the autism movement, and in fact we'd be nowhere without them.  But autistic kids grow into autistic adults, and for such a large organization, the percentage representation of actual autistics involved with Autism Speaks is far lower than it should be. My words are in no way an indictment of parents, simply a recognition that Autism advocacy is first and foremost about Autistic people, and secondarily about families.  Both need support, and their wants and needs may sometimes differ and even be at odds.

I wish Valerie and Stephen all the success in the world in moving Autism Speaks onto a healthier course. They join Kerry Magro, Amy Gravino, and the other autistic volunteers who have struggled to turn that ship these past few years.  The organization’s fundraising power could do tremendous good, if redirected in a constructive way.  Over the past decade, too much money has been wasted on nonproductive science, and too little spent on real deliverable benefit to the community.  Critics have said this for years.  With the leadership stepping down, there’s an opportunity for the next management to seek a new direction.

Autism Speaks would be wise to focus on this goal:

Develop tools and therapies that benefit the people who live with autism today.  

Let go of the genetics, and the pharma studies that may pay off for the next generation.  Autism family concerns are today.  If the families who funded the science you've done so far knew what it got them, would they fund it again?  Or would they look to someone who truly has their interests at heart?

I hope they succeed.

Autism Speaks has taken a step by appointing two autistics to the board.  Let's see what happens now.  Will Autism Speaks Listen?

(c) 2015 John Elder Robison

John Elder Robison is an autistic adult and advocate for people with neurological differences.  He's the author of Look Me in the Eye, Be Different, Raising Cubby, and the forthcoming Switched On. He's served on the Interagency Autism Coordinating Committee of the US Dept of Health and Human Services and many other autism-related boards. He's co-founder of the TCS Auto Program (A school for teens with developmental challenges) and he’s the Neurodiversity Scholar in Residence at the College of William & Mary in Williamsburg, Virginia.  

The opinions expressed here are his own.  There is no warranty expressed or implied.  While reading this essay may give you food for thought, actually printing and eating it may make you sick.

4 comments:

jonathan said...

No it will be same old same old with them not funding scientific research needed to find a cure and trying to put money into various vocational type programs or autism in the workplace videos and funding laurent mottron and other neurodiversity researchers. They might even give your pal alex plank some more money for videos.

It is ridiculous they'd want to listen to two persons who have doctoral degrees who can get married and make good livings who are barely affected by their autism if at all.

They really need to get Roger Kulp on their board. He's my choice and someone who could really be effective in straightening them out and endorsing scientific research that will help find answers for a lot of autistic people as soon as possible.

Cherry Divine said...

Autism and Asperger's should never have a cure. We should all just be accepted as individuals with very rare talents.

irish texan said...

Perhaps they will actually help adults and not focus entirely on kids...i sent a email to them seeking assistance for me. Not a peep.
I am still trying to find help in the DFW area of Texas.
I got this blog address from ADHA community sites

Conduct management said...

I've been reading about Interventions for challenging behavior and autism speaks is an interest. Thanks for sharing some updates.