Earlier this week, Autism Speaks founder Suzanne Wright published an op-ed piece that laid out her views on autism, and what we should do about “the problem.” Those of you who follow my writing know I am a strong believer in science, and the promise of new tools to remediate the ways autism disables us. However, there is a vast gulf between the tone of Mrs. Wright’s words and my own. I believe we see the situation rather differently. As an autistic person this is a time when I must give primacy to my own life experience and feelings.
I celebrate the gifts autism brings us, and I have discussed at length the emerging realization that autism – as a neurological difference – confers both gift and disability on everyone it touches. It’s the fire the moves humanity forward, while simultaneously being a fire that can burn us individuals as we try to make our way.
Many autistic people are aware of this dichotomy. Some of us feel “totally disabled” and others feel “totally gifted.” Most of us – I’d venture to say – feel both ways, at different times, depending on what we’re doing at that particular moment.
Consequently, I support the idea of changing society to make it more accommodating for people who are different. I also support the idea of developing therapies, treatments, and tools to relieve suffering and disability from both autism and the conditions that accompany it for some people. I know how hard life is for some on the spectrum, but I also see the gifts other autistics bring. Both are touched by autism, and it's part and parcel of who we are. That's why we face such a difficult challenge, to keep the gifts while relieving the suffering. It's immeasurably harder than simple disease fighting.
If I act a bit different because I’m autistic, I think it’s my right to do so without being mocked, bullied, or discriminated against. At the same time I realize people are people, and if I act like a jerk, I will be treated as one. I understand I have a responsibility to learn how to behave in ways others will find acceptable or even appealing.
If I can’t do something, and I want to be able to do it, I feel it’s my right to ask for help. At the same time, I recognize that society must be there with the tools to fulfill its part of the bargain.
Not everyone wants help with disability and suffering, and I support their right to exist and be accepted just as they are.
The point here is that there are many ways autistic people can choose to live their (our) lives and all are valid and deserving of respect. Some people want a little help, while others face major challenges. They (and their families) feel great anger and frustration over society’s weak response to their cries for help. As a progressive society I argue that it is our duty to develop ways to meet the very diverse range of needs our community has.
Mrs. Wright’s op-ed articulates a view of the “autism situation” that is very different from my own. She says things I would never say to people with autism and cannot in good conscience stand by. Given her role as leader of the organization, I am afraid it is my signal to exit the Autism Speaks stage.
I share with you the following letter, just delivered to Liz Feld, president of Autism Speaks.
For the past four years I have worked very hard to defend Autism Speak after a series of public relations missteps; beginning with the I Am Autism video. The most recent “Autism Speaks Point of View” http://www.autismspeaks.org/news/news-item/autism-speaks-washington-call-action shows me that my words and efforts have had no real impact on the beliefs of the actual leadership of the organization.
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.
We do have problems, and we need help. Some of us need counseling or training, while others have significant medical challenges. We also need acceptance, and support. There is a great diversity in our community, which means we have a very broad range of needs. Unfortunately, the majority of the research Autism Speaks has funded to date does not meet those needs, and the community services are too small a percentage of total budget to be truly meaningful. We have delivered very little value to autistic people, for the many millions raised.
I stayed on board because I felt the fundraising power of Autism Speaks could be directed toward research and services that would be truly beneficial to people living with autism today. I felt the occasional public relations gaffe was tolerable if we began delivering therapies that would really help our community. I expressed my views to that effect in public, at science reviews, and to Autism Speaks staff.
One of the things I’ve said all along is that I believe change is best accomplished from inside, through reasoned discussion. Recent public statements from Autism Speaks have shown that my ideas have not taken hold among top leaders, despite my best efforts.
This latest op-ed piece is simply not defensible for someone who feels as I do, and I cannot continue to stand up for the public actions of an organization that makes the same mistakes over and over again by failing to connect to the community it purports to represent.
Autism Speaks says it’s the advocacy group for people with autism and their families. It’s not, despite having had many chances to become that voice. Autism Speaks is the only major medical or mental health nonprofit whose legitimacy is constantly challenged by a large percentage of the people affected by the condition they target.
The absence of people with autism in governing or oversight roles has crippled Autism Speaks in its efforts to connect with the community. Any group that hopes to be accepted in service to autistic people must make autistic people its #1 priority, with no exceptions. The priority cannot be autism parents, or autism grandparents. It’s got to be actual people with autism.
No one says the Cancer Society does not speak for them. No one describes the Cystic Fibrosis Foundation as an evil organization. All that and more is said of Autism Speaks every day. I’ve tried to be a voice of moderation but it hasn’t worked. Too many of the views expressed by the organization are not my own; indeed I hold very different points of view.
Autism Speaks still has a base of support among families of young children, but it has very little support from parents of older kids, or autistic adults. And the fact is, that is the majority of the autistic population. I’ve made that point in the past; apparently to no avail. I’ve suggested things the organization could do to garner support from those groups, but those suggestions have been ignored.
Consequently, I have decided to resign from the Science and Treatment Boards, which are my only formal connections to Autism Speaks. I’m sorry to take this step but I feel I’m left with no choice.
Autism Speaks has a lot of potential with its media presence, public name recognition, celebrity connections and fundraising power. It could do a lot of good, if directed differently. I hope that happens one day.
If you want to talk about making meaningful changes within the organization, giving people with autism a substantial voice in your governance, and shifting your focus to one that would truly deliver on the promise of the funds raised, I would be open to the discussion. Until then, it’s time for me to bow out.
John Elder Robison
November 13, 2013