I'm doing some research into Autism Speaks that I've been meaning to do for a long time, trying to understand what exactly has led up the wide-scale boycotts of one of the most well-known autism research and advocacy agencies in the US.
I knew the basic details. In November 2013, Autism Speaks co-founder Suzanne Wright posted a letter on the Autism Speaks website on the eve of the first "Autism Speaks to Washington" Policy and Action Summit in Washington, D.C. In it she referred to the "autism crisis", calling autistic children "gravely ill", equating them with children who had gone missing, and blaming them for the break-up of families that are "not living" but merely "existing". After stressing that "This is autism", she called these families "despairing", and mentally, physically, and emotionally "depleted". She then went on to talk about autism as a "monumental health crisis", and a "national emergency" for which there's no
Now, anyone who's worked in the autism community knows that there certainly are autistic individuals who need a lot of support, and families who feel very stressed and overwhelmed by the needs of their child. But the blanket statements about the capabilities of autistic children, the negative language around autism, and the bleak picture of autistic children, their prospects as adults, and life with them that the letter painted rubbed all sorts of people the wrong way - agencies, bloggers, advocates, and donors. John Elder Robison, one of the few autistic employees at Autism Speaks, resigned soon after the letter was published, saying:
"I have tried to help Autism Speaks staffers understand how destructive its messages have been to the psyches of autistic people. We do not like hearing that we are defective or diseased. We do not like hearing that we are part of an epidemic. We are not problems for our parents or society, or genes to be eliminated. We are people."
Autism Speaks: Going a Little Deeper
What I didn't realize until I started looking into this a little bit more deeply, in order to blog about it, is that rather than an isolated incident, this letter seems to be straw that broke the camel's back. It's way too much for one blog post. So let's break it down a bit, starting with a 2006 PSA that Autism Speaks produced called "Autism Every Day".
A number of thoughts went through my head as I watched this PSA. Having worked with autistic children and their families, I heard some of the frustrations and fears that I've heard parents express, and I was definitely empathetic. I saw and heard things that made me worry about how the parents were coping.
I wondered, as I always do when there's an interview being done in front of people that don't communicate using words, how much the children understood what was being said in front of them.
I wondered how Autism Speaks reconciled going in and doing this video with families that were obviously having such a difficult time and needing supports with the fact that in 2012 only 3% of their budget was spent on support services for autistic people, when 25% was spent on research into causation and prevention. Read more about Autism Speak's budget here It felt like I was watching a camera crew going in and filming starving people, and then just leaving without giving them anything to eat.
I understand the need for research (to an extent; I'm more into "acceptance" vs "cure" and would rather that research money go into interventions that will benefit those who are already diagnosed), but that budget represents what I think are skewed priorities for an autism advocacy agency.
Perhaps the skewed priorities stem from the fact that there are very few autistic employees at Autism Speaks and none on the Board of Directors. Autistic people don't have a say in the direction of the agency. Read more here about the lack of autistic staff and Board Members at Autism Speaks
The tone of the video bothered me immensely. If I was the mother of a newly-diagnosed child and was shown that video, I'd assume that my life was over and that my child would basically be in my care for the rest of my life - and why shouldn't I trust that assumption, since it's coming from Autism Speaks, an agency that's so widely known? There was nothing in that video about autistic people who do well in school and work, who live independently, who make valuable contributions to society...who get married, have children...whose parents, siblings and friends find genuine joy in their presence...nothing to suggest that raising an autistic child could be anything but struggle and heartbreak against a disease that needs to be eradicated.
Autism Speaks is Not Speaking for Autistic PeopleAs bloggers Lydia Brown and Renee Salas have said so well (along with so many others), the idea that there's something wrong with autistic people, that life is tragic for them and that they need to be cured, is an outdated one. It's not reflective of the beliefs of a large and growing population of the autistic community, and it's deeply offensive to them (read some of the comments on the YouTube page for "Autism Everyday"). To even make the assumption of autistic people who don't communicate verbally that they'd rather that life be different is a dangerous one, to my mind. As I've written before, we don't have the right to assume that everyone wants a life that looks like ours, and to assume, based on our ideas of what we think that we'd want if we were in their shoes, that they'd want the same thing.
The optimal way for Autism Speaks to its spend money seems, to me, to be on supports that allow autistic people to live the lives that they want and that allow families and agencies to support them to do so. But that doesn't seem to be what Suzanne Wright wants - she's even said that autism should be "a word for the history books."
I don't know about you, but that attitude scares me. I joined the the Boycott Autism Speaks movement based solely on the incident in November...now that I know that it was really just the tipping point, I'll definitely be staying.
There's more to say about this, but I'll finish for now with a link to the 2014 Joint Letter to the Sponsors of Autism Speaks, letting them know about what's going on there and signed by 26 agencies.
Join the Boycott Autism Speaks movement