Autism Speaks

Autism Speaks is a New York City-based advocacy organization, founded in February 2005 by Bob Wright, Vice Chairman of General Electric, and his wife Suzanne, to improve public awareness about autism and to promote autism research. The Wrights founded Autism Speaks to help find a cure for autism spectrum disorders a year after their grandson, Christian, was diagnosed with autism.^[1]

Spearheaded by the Wrights, the organization attracted a powerful board of directors, "world-class scientific advisers and celebrity fund-raisers like Jerry Seinfeld and Paul Simon", and became a powerful lobbying voice in Washington.^[1] Since its founding, Autism Speaks has merged three existing autism organizations and raised millions of dollars for autism research.^[1]

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Activities

Walk for Autism Research

The Walk for Autism Research program conducts the annual autism walk on Long Island, New York; the walk attracted 20,000 participants in October 2006 and raised $2 million for funding peer-reviewed autism research.^[2]

Raising awareness

Suzanne Wright appeared on NBC's The Today Show to discuss the Ad Council campaign launched by Autism Speaks to raise autism awareness and to highlight the importance of early detection.^[3] The Today Show aired a week-long series of stories in February 2005, highlighting autism research and treatment.^[4]

Autism Genetic Resource Exchange

Autism Speaks funds the Autism Genetic Resource Exchange, a DNA repository and family registry of genotypic and phenotypic information that is available to autism researchers worldwide.^[5]

Autism Tissue Program

Autism Speaks funds the Autism Tissue Program, a network of researchers that manages and distributes brain tissues donated for autism research. These donations are rare and are a vital component of research into the causes of autism.^[6]

Mergers

Autism Speaks, through a series of mergers, has created a distinct organization combining an advocacy group, an organization devoted to peer-reviewed research into genetic causes, and an organization which championed alternative theories and therapies.^[1]

In early 2006, a year after its founding, Autism Speaks joined with the National Alliance for Autism Research (NAAR),^[7] an organization promoting high standards for peer reviewed research into genetic causes.^[1] NAAR was founded in 1994 to stimulate biomedical research and science-based approaches to understanding, treating, and curing autism spectrum disorders. The founders comprised a small group of parents, including two psychiatrists, a lawyer and a chemistry professor.

NAAR raised money to provide research grants focusing on autism, and had committed an excess of $20 million to over 200 autism research projects, fellowships and collaborative programs—more than any other non-governmental organization. NAAR focused intently on its role in establishing and funding the Autism Tissue Program, a post-mortem brain tissue donation program designed to further autism research studies at the cellular and molecular level. Other major programs included the 'High Risk Baby Sibling Autism Research Project', and the 'NAAR Genome Project'. NAAR also published the NAARRATIVE, a newsletter on autism biomedical research.

On February 5, 2007, Autism Speaks completed a merger with Cure Autism Now (CAN), a 10-year-old organization based in Los Angeles that was primarily involved in autism research fundraising^[8] and promotion of unconventional theories and therapies.^[1]

Autism Speaks is also allied with Autism Coalition for Research and Education, an advocacy group.^[1]

Controversies

Autism Speaks has become involved in controversies in autism. Some critics of Autism Speaks would prefer that the organization direct its efforts toward increasing the acceptance of individuals on the autism spectrum, citing concerns that the concept of an autism cure is misguided.^{[citation needed]} Other critics have questioned Autism Speaks' focus on funding genetic research primarily, while neglecting what is seen by many parents as evidence of harm related to environmental risk factors.^{[citation needed]}

Autism Speaks sponsored and distributes the video Autism Every Day, produced by Lauren Thierry and Eric Solomon.^[9] Thierry has accused Autism Speaks of appropriating her film for their own purposes.^[10] In the video, Alison Tepper Singer, senior vice-president of Autism Speaks, tells within earshot of her autistic daughter that she considered driving off a bridge with the daughter in the car.^[11] Some disability rights leaders fear the video may lead to murder or suicide, by convincing people that raising autistic children is unbearable; for example, on May 13 2006, Katherine McCarron, a three-year-old autistic girl, was murdered by her mother.^[12]

Katie Wright, the daughter of Bob and Suzanne Wright and the mother of Christian Hildebrand, is a strong believer in the theory that autism is caused by thiomersal, a preservative that was formerly common in children's vaccines in the U.S.; no major scientific studies have confirmed this hypothesis.^[1]

References