Autism Speaks - will it ever speak for us?
Lisa Jo Rudy on The Autism Blog asks why Autism Speaks’ New Board Members Include No One with Autism? It is a good question. Autism Speaks has grown phenomenally since its inception in 2005. Suzanne and Bob Wright set up Autism Speaks in response to their grandson’s diagnosis of autism. Bob Wright’s background as president, then chairman and CEO at American media giant NBC helped shape the organization of Autism Speaks.
It is a not for profit corporation that is run from the top down with a high powered staff and a board of directors who bring personal wealth, business acumen and, in many cases, a family connection to autism. But after three years of spectacular growth it still has not appointed anybody with autism to a senior post within the organization. There is no lack of suitable candidates. As Lisa Jo Rudy points out:
It’s not as if the Wrights (who run Autism Speaks) don’t have impressive people on the autism spectrum to choose from. There are authors, speakers, professors, researchers and artists - all of whom have impressive public profiles, all of whom have the appropriate credentials, and many of whom would be eager to take an active role with Autism Speaks.
But if we look at the history of Autism Speaks in more detail it is pertinent to ask why the Wrights would ever consider inviting autistic people onto the board. And even if they did would autistic people feel comfortable joining Autism Speaks?
HISTORY
Despite its humble beginnings, with a handful of employees in a tiny makeshift office, Autism Speaks grew rapidly thanks to the Wright’s extensive contacts in the media and business worlds from whom they recruited fundraisers and board members. Bob Wright’s position as head of NBC probably helped ease the path for a week of autism awareness programming in February 2005 that culminated with the launch of Autism Speaks on the NBC’s Today Show and CNBC’s Power Lunch on Friday, February 25.
From the outset Autism Speaks was aligned with the National Association for Autism Research, (NAAR) which had raised over $20 million for autism research since its inception in 1994. Within a year the two organizations had merged. This was the key to Autism Speaks success. Bob Wright was in a position to deliver national media coverage and celebrity fund raisers like Paul Simon. This gave Autism Speaks a much higher profile than any other autism organization and a massive fund raising capacity. But it lacked infrastructure. This was obtained via a series of acquisitions and mergers, first NAAR and then, in 2007 Cure Autism Now (CAN) which had previously disbursed grants of $39 million in its 12 year history.
By any measure Autism Speaks has been an outstanding success. NAAR and CAN provided nearly $60 million for research over 12 years. In 2007 alone Autism Speaks provided $30 million. Generation Rescue can afford to buy advertizing space in newspapers at $100,000 a time. In contrast Autism Speaks’ advertizing campaign attracted donated media worth $81million! It is working with federal agencies like the CDC and NIH. It has lobbied hard to get autism bills through Congress. It has expanded its Autism Treatment Network and has begun funding services for families including an online directory of resources. In addition to the wealthy sponsors who gave $16 million in 2007 it has also developed its local fund raising base with over 300,000 volunteers, mainly participants in sponsored walks for autism.
CONTROVERSY
Autism Speaks’ history is surprising for a number of reasons. Bob Wright has a consistent policy to uncover the cause(s), prevention, treatments and cure for autism. But he has managed by and large to avoid involvement with the biomedical movement of autism treatment and its increasingly strident anti-vaccine stance. This is despite the fact that his daughter is heavily involved with anti vaccine groups Safe Minds and NAA and has been critical of Autism Speaks on some of the vaccine/autism groups on the internet. Whatever his personal views on vaccines Autism Speaks remains firmly wedded to mainstream science. (There is evidence to suggest that Bob Wright is at best equivocal on the subject. See his response to anti vaccine sentiments at a public meeting in London)
Autism Speaks has grown despite its lack of theoretical coherence. It uses the rhetoric of the “autism epidemic” and refers to autism as a “global health crisis” in order to generate a sense of urgency and drive its fundraising. It attempts to appease the anti vaccine camp with a policy statement that supports more research into vaccine safety. But the scientific priorities of its merged partners, CAN and NAAR are biological rather than biomedical. They stress genetic research and tissue banks. These priorities are reflected in Autism Speaks budget allocations and, as epitomized by Katie Wright, have guaranteed the deep hostility of the biomedical/anti vaccine movement.
At the same time their slick fundraising techniques have alienated some mainstream autism groups whose efforts to raise funds for use in the local community have been udermined by hostile tactics from Autism Speaks including organizing competing events for the same charity dollars.
And finally, Autism Speaks’ commitment to treatment, prevention and cure has done nothing to endear it to the community of autistic adults and to parents and researchers who are moving towards the ideas of autism acceptance and neurodiversity. These ideas provide an alternative to the medical model of autism that Autism Speaks has adopted. But apart from the aforementioned public meeting in London Autism Speaks shows no sign of engaging seriously with this alternative view.
BIG AUTISM
Autism Speaks is the corporate face of autism. It is effectively Big Autism in the USA and it is seeking to expand overseas. But there is an unresolved contradiction at its heart. It is driven by Bob Wright’s determination to find a cure for his grandson. This hope for a cure has brought a significant section of the autism community on board. And Bob Wright is using this support to raise awareness and money to fund the scientific research to bring him the answers he wants. The high profile ad. campaigns, the headline grabbing fund raising spectaculars and Bob Wright’s hands on approach to running Autism Speaks all put pressure on the scientists at Autism Speaks to deliver. But what if the scientists cannot deliver? What if the critics of the medical model are nearer to the truth about autism? Does the business ethic that drives Autism Speaks allow for a rethink of their strategy and a new direction?
I hope so. If Autism Speaks can accommodate the sort of debates about acceptance and inclusion that have strengthened the National Autistic Society and led directly to its “Think Differently About Autism” campaign, then maybe it can change the face of autism advocacy in America. The changes in the NAS arose from the activity of autistic activists and their allies within the organization. If Autism Speaks continues to exlude such people and with them all possibility of internal debate it will be contributing to its own eventual demise. Until then, whatever the results of the science it is funding, as a corporate entity it remains a potent source of harmful propaganda about autism.
Comment by CS | December 14th, 2008
I’m afraid in many social aspects, America is not as mature as the UK so I hold out no hope for a change at Autism Speaks. Suzanne Wright has frequently referred to the charity in the possessive (i.e. my charity).
Comment by David L. | December 14th, 2008
Here in America, many see the United States as a “can-do” country. The difficult we do immediately, the impossible takes just a little bit longer… All we have to do is roll our sleeves up and soon autism will something for the history books. By and large, people assume that autistics are incapable of speaking for themselves to the point that anyone capable of speaking on their own behalf surely can’t have autism. If autism is so “devastating”, why wouldn’t people want to cure, or even better, prevent autism? I get the feeling that what most people are concerned about is the drag on the economy caused by a “burgeoning” number of freeloaders.
I highly doubt Autism Speaks will ever speak for the autistics themselves, not when the goal is their elimination.
Comment by Lisa | December 14th, 2008
wow - this is an amazing article. I think it does a terrific job of outlining the situation with autism speaks. The only other point I’d make is that Autism Speaks has begun to incorporate some of the non-research mission which, in theory, is NOT included in its mission - a focus on pushing for insurance, providing community grants for programs, etc.
Meanwhile, Katie Wright, through Age of Autism, continues to present the inner workings of Autism Speaks in a not-so-positive light.
Lisa (autism.about.com)
Comment by David Andrews M. Ed. (Distinction) | December 14th, 2008
“I highly doubt Autism Speaks will ever speak for the autistics themselves, not when the goal is their elimination.”
Exactly, David.
Autism Speaks isn’t about autism. It’s about eradication.
Comment by Tariqistan | December 14th, 2008
Meanwhile, Katie Wright, through Age of Autism, continues to present the inner workings of Autism Speaks in a not-so-positive light.
This is charitably put. Katie and AoA are engaged in a destructive guerrilla marketing campaign to undermine the public’s confidence in the vaccine program. They are anti-vaccine, anti-public health, and anti-social. They are not worthy of consideration, only our contempt.
Comment by Ivar T | December 14th, 2008
Jonathan Mitchell at Autism Gadfly also commented Judy’s piece. I attempted to comment his post, but it doesn’t seem to have appeared.
I basically wrote that I didn’t like the idea of money deciding what is best for the autism community.
Comment by Catana | December 14th, 2008
With so much money and so many high-powered people behind it, I don’t think there’s really anything that can reduce the power of Autism Speaks–except science. They’re looking to science to find a cure. It’s more likely that science will eventually invalidate their basic thesis. So, by supporting research, they’re contributing to their own destruction. In the meantime, they’re doing more harm than good.
Comment by jonathan | December 14th, 2008
Hi Ivar, I did not notice your comment on autism’s gadfly why don’t you try posting it again? You are usually polite in your commentary so I would most likely let it through.
Hi Mike, if you and everyone else in the ND movement are so curious as to why autism speaks won’t appoint a member with autism to the board why don’t you send them an email and ask them. When I emailed them complaining about funding of the laurent Mottron lab who employs michelle dawson, they wrote me back a response. I was not happy with their response but they did send me one. It seems the neurodiversity community wants to say and make sweeping accusations against AS without getting their side of the story. They constantly ask this question about no autistic board members yet they never seem to do the obvious which is email or phone autism speaks and ask them.
also I feel it is the neurodiversity movement that promotes dangerous propaganda and not autism speaks, though I don’t believe autism speaks is a perfect organization for a variety of reasons. Mike Stanton might as well ask why the neurodiversity proponents and researchers have perhaps not failed in to present their point of view scientifically or why the persons like Bob Wright and myself who long for a cure for autism can’t show the ND movement the light and get them to change their position.
Comment by Mike | December 14th, 2008
Jonathon,
that is a good idea about asking Autism Speaks why they have no autistics on their board. Their email address is contactus@autismspeaks.org
As for the rest of your comment, can you give examples of any “sweeping accusations” on my blog or is this just you making sweeping generalizations? Some of us are attempting to present our point of view scientifically. But as you yourself have stated, you object to our being granted funds from Autism Speaks to carry out scientific research.
Comment by jonathan | December 14th, 2008
It is you that should contact autistic speaks, mike, not I since you are the one who is so curious as to why they have no autistics on their board, so the onus for answering this question should be on you and not on me. I am not sure what sweeping accusations on my blog that you were talking about except for your last sentence that autism speaks spreads dangerous propaganda yet you give no examples of dangerous propaganda. Neurodiversity seems to claim that there are easy answers such as societal change, that there is nothing wrong with being autistic and that autism should not be looked at as a disease. To me this is very dangerous and harmful propaganda which causes people to believe there are easy answers when there is not. If you believe autism speaks spreads dangerous propaganda perhaps again the onus should be on you to give an example of when they have ever spread dangerous propaganda when in fact they are persons mostly who have autistic relatives who want a better life for their severely disabled and crippled children who are far more impaired than your children or probably anyone else who preaches an ND point of view. That is all I really have to say in the matter. Until you contact autism speaks and find out what their side of the story is you can either tell me here or email me privately at jmitch955@aol.com. Until you do that I don’t think there is any point in having any more dialogue with you. You seem to have done a great deal of research on autism speaks, reported it on this blog yet you have totally neglected to get their side of the story and ask them why they have not appointed an autistic board member I await your contacting autism speaks and I await you publishing it on this blog. In the meantime any more dialogue with you is pointless.
Comment by Mike | December 15th, 2008
Jonathon,
I printed the email address for Autism Speaks for the benefit of my other readers and I have taken your advice and contacted them.
Here is one example of propaganda from the Autism Speaks website.
Autism is a complex neurobiological disorder that typically lasts throughout a person’s lifetime. It is part of a group of disorders known as autism spectrum disorders (ASD). Today, 1 in 150 individuals is diagnosed with autism, making it more common than pediatric cancer, diabetes, and AIDS combined.
This is at best sloppy and at worst deliberately misleading. 1 in 150 individuals are not diagnosed with autism. 1 in 150 individuals are not even diagnosed with an ASD. Epidemiological studies suggest a prevalence of 1 in 150 for all ASDs in the USA. The number of people with a clinical diagnosis is much lower.
And if we are going to compare autism with cancer let us compare the more severe end of the autistic spectrum. ASD plus mental retardation/learning difficulties = 1 in 500. Childhood cancers are around 1 in 300 and one fifth of those will die. So for every three children with severe autism we have five children with cancer, one whom will die. But according to Autism Speaks autism is more prevalent than childhood cancer, diabetes and AIDS combined. Dangerous propaganda? I think so.
You claim that we advocate for easy solutions like societal change and deny that there is anything wrong with being autistic or that autism is a disease. One out of three there Jonathon. Yes we do dispute claims that autism is a disease. But we do not deny that autism is a disablity. And societal change is easy? Tell that to blacks, women and gays who ave being trying to change societal racism, sexism and homophobia for as long as I can remember. Please, Jonathon, argue with the specifics of our position and stop tilting at windmills of your own creation.
And please do not presume that my children or those of anybody else with an an ND point of view are necessarily less disabled than the children of those who are pro cure. As it happens I encounter severely autistic children every day. I teach them. It’s my job. I want a better life for them and for my own children. I do not believe that misrepresenting autism as a disease and holding out false hopes of a cure is the way forward.
Regarding our “dialogue” I am responding to your comments here on my blog. I will report here on any response I get from Autism Speaks. You are free to respond or not. You may think that is pointless. I think any honest exchage of views is useful.
Comment by jonathan | December 15th, 2008
thanks for the response mike. I am glad you contacted autism speaks. I will await their answer to you and I look forward to reading the results of your contacting them on this blog then maybe I will respond further
Comment by Liz Ditz | December 15th, 2008
Dear Mike,
Thank you for the clear and fair article, outlining some of the problems with Autism Speaks.
In my view, the search for “causes” or a “cure” is a distraction–how do we improve the lives of people, adults and children, with autism?
Comment by Harold L Doherty | December 15th, 2008
“will it ever speak for us”
Who do you mean by us Mr Stanton? Do you mean those autistic persons who view autism as what it is by definition, a mental disorder? Do you mean those autistic persons who seek cure or treatment for their autistic disorder? Do you mean those severely (are such adjectives permitted in the enlightened UK?) autistic persons who can not understand this discussion and whose parents and carers speak on their behalf?
Harold Doherty
North America
Comment by jdc | December 15th, 2008
“…after three years of spectacular growth it still has not appointed anybody with autism to a senior post within the organization…”
That does seem a little strange. It seems to me (an outsider) that this is a case of one group of people appointing themselves as spokespersons for another group.
If there’s no-one on the autistic scale who can speak on the subject of autism (or for Autistics) then I must have imagined all those autism advocacy blogs written by people with ASDs that I thought I’d been reading.
Comment by jypsy | December 15th, 2008
“I am glad you contacted autism speaks. I will await their answer to you”
All I can say, from experience, is “don’t hold your breath”.
Comment by Hannah | December 15th, 2008
Well, it may be a ‘mental disorder’ in the US, but it is viewed differently elsewhere in the world. As someone with Asperger syndrome who is entirely capable of representing her own views, I had a very ‘interesting’ time with Autism Speaks, being told that I had no right to an opinion as Asperger syndrome isn’t autism. Well, it’s a form of it. Can’t wait for the new DSM V classifications to be out where I suspect that the differentiation between ASDs will lessen and it will be re-divided into LFA, MFA and HFA. Wonder what the excuse for excluding our viewpoints will be then? That we can speak?
Comment by Mike | December 15th, 2008
Harold asks, “Who do you mean by us?”
All those within the autism community who feel excluded by Autism Speaks’ agenda. The reason we feel excluded is because it is Autism Speaks stated aim “to bring the autism community together as one strong voice.” But it ignores the plurality of voices. Autism Speaks has so far not shown any interest in achieving a consensus by listening to that plurality of voices. Rather, it is seeking to impose the views of its founders on the whole community.
Comment by David Andrews M. Ed. (Distinction) | December 15th, 2008
Mike: “Rather, it is seeking to impose the views of its founders on the whole community.”
Basically - good old fashioned cultural imperialism at its most fucking irritating!
Isn’t it?
Pingback by blog-thing : Singer resigns from Autism Speaks | January 16th, 2009
[...] did Autism Speaks when she told them why she was resigning. So what is Autism Speaks up to? I have written previously about the tension within Autism Speaks between Wright’s agenda and the way he runs Autism [...]
Comment by KateGladstone | January 16th, 2009
In my experience and observation, “Autism Speaks” tends to ignore e-mails/letters/phone calls from known members of the autism spectrum — these include phone-calls made to advise “Autism Speaks” that one or more of the e-mail addresses on its web-site does not function. Sometimes, the receptionist hangs up — sometimes, she forwards it to a voice-mail circuit whose owner never returns the call — sometimes, the receptionist switches to cooing, patronizing baby-talk as soon as she learns you’re on the spectrum (”WELL, dear, the im-POOOOR-tant thing RIIIIIGHT NOWWWWW is that YOOOOOUUUU NEEEEEED to join AW-TIZZ-UM SPEEEEAKS because WEEEE are HEEERE for AAAAALLLL the VER-y SPESH-ull PEE-pull JUST LIKE YOOOOUUUU!”) — sometimes, the receptionish will promise a written answer to one’s inquiry but the only “written answer” (whether days or weeks later) consists of an “Autism Speaks” advertising brochure and a letter requesting money.
I doubt this will change much after “Autism Speaks’ ” recent palace coup.