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Autism Speaks - will it ever speak for us?

Posted Dec 14 2008 11:06pm

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.

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