Autism Speaks
From Wikipedia, the free encyclopedia
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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[edit] Activities
[edit] 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]
[edit] 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]
[edit] 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]
[edit] 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]
[edit] 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.[8]
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[9] and promotion of unconventional theories and therapies.[1]
Autism Speaks is also allied with Autism Coalition for Research and Education, an advocacy group.[1]
[edit] Controversies
Autism Speaks has become involved in controversies in autism.
Katie Wright, the daughter of Bob and Suzanne Wright and the mother of an autistic child, believes 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]
Autism Speaks sponsored and distributes the short film Autism Every Day, produced by Lauren Thierry and Eric Solomon.[10] Thierry has accused Autism Speaks of not paying her for her work on the film.[11] The film has been criticized for a scene depicting a mother who, frustrated with inadequate schools for her autistic child, contemplated driving her car off a bridge with her child in the car.[12]
In January 2008 a critical parody of the Autism Speaks website was taken down after Autism Speaks sent a letter to the parody website's developer, an anonymous blogger who is autistic, asking the blogger to stop using the Autism Speaks name and logo without permission, and claiming the spoof could confuse people looking for information about autism. Other parody sites immediately sprang into existence.[13]
Autism Speaks advocates for a cure to autism.[14] Seeking a cure is debated by persons with autism and their families. In an article to members of GRASP, Singer explained the position on cure is for regressive or low-functioning individuals and not for overall autism spectrum disorders.[15] Simultaneously, GRASP published an article for Autism Speaks members to explain that the term "cure" has a medical, scientific, and personal meaning to persons with autism and other spectrum disorders and thus the use of such a word may both be inaccurate and hurtful.[16]
Autism Speaks does not have staff or board members who state, publicly, that they have autism or an autism spectrum disorder; they do have staff and board members who are parents of autistic children.[17] This has led to criticism from persons with autism for lack of inclusion with the argument that autistics should be included in research and advocacy for themselves.[18]
[edit] References
- ^ a b c d e f g h Gross J, Strom S. "Autism debate strains a family and its charity", New York Times, 2007-06-18. Retrieved on 2007-10-09.
- ^ Long Island Walk Holds Enthusiastic 2007 Kick Off. Autism Speaks. Retrieved on 2007-11-01.
- ^ Suzanne Wright Discusses New Autism Speaks Awareness Campaign on Today Show, MSNBC. Autism Speaks. Retrieved on 2007-11-01.
- ^ NBC Networks to Focus on Autism. Autism Speaks (February 17, 2005). Retrieved on 2007-11-01.
- ^ Geschwind DH, Sowinski J, Lord C et al. (2001). "The autism genetic resource exchange: a resource for the study of autism and related neuropsychiatric conditions". Am J Hum Genet 69 (2): 463–6. doi:. PMID 11452364.
- ^ Haroutunian V, Pickett J (2007). "Autism brain tissue banking". Brain Pathol 17 (4): 412–21. doi:. PMID 17919127.
- ^ Autism Speaks. "Autism Speaks and The National Alliance for Autism Research Complete Merger". Press release. Retrieved on 2007-11-01.
- ^ Eric London (November 1997). "A Psychiatrist's Journey from Parent to Founder of Research Advocacy Organization". Psychiatric Times XIV (11).
- ^ Autism Speaks. "Autism Speaks and Cure Autism Now Complete Merger". Press release. Retrieved on 2007-11-01.
- ^ Autism Every Day. Autism Speaks (2006). Retrieved on 2007-10-26.
- ^ Friedman R. "Celebrity autism group in civil war", FOX News, 2007-06-07. Retrieved on 2007-10-09.
- ^ Liss J. "Autism: the art of compassionate living", WireTap, 2006-07-11. Retrieved on 2008-03-21.
- ^ Biever C. "Voices of autism 'silenced' by charity", New Scientist, 2008-02-01. Retrieved on 2008-02-05.
- ^ Autism Speaks, Goals. Autism Speaks. Retrieved on 2008-04-03.
- ^ Singer, Alison. "Cure is not a four-letter word" (doc), grasp.org. Retrieved on 2008-04-04.
- ^ Carley, Michael John. "Articles of Understanding: GRASP, and the word “Cure"" (doc), grasp.org. Retrieved on 2008-04-04.
- ^ Autism Speaks, Leadership. Autism Speaks. Retrieved on 2008-04-03.
- ^ ASAN lobbies for autistic representation in NJ (2007-03-05). Retrieved on 2008-04-03.
[edit] External links
- Autism Speaks. Retrieved on 2008-05-29.
- Autism Genetic Resource Exchange. Retrieved on 2008-05-29.
- Autism Tissue Program. Retrieved on 2008-05-29.
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