Autism Speaks

A logo with a blue puzzle piece and text below saying "Autism Speaks It's Time To Listen"

Autism Speaks is an autism advocacy organization in the United States that sponsors autism research and conducts awareness and outreach activities aimed at families, governments, and the public.[1] It was founded in February 2005 by Bob Wright, vice chairman of General Electric, and by his wife Suzanne, a year after their grandson Christian was diagnosed with autism.[2]

In January 2008, child clinical psychologist Geraldine Dawson, Ph.D., became Autism Speaks's chief science officer. In April 2010, the organization named Yoko Ono its first "Global Autism Ambassador."[3] Since its founding, Autism Speaks has merged with three existing autism organizations and raised millions of dollars for autism research.[2]

Since February 2009, Autism Speaks has used the Wubbzy character from Wow! Wow! Wubbzy! as a mascot.[4]

An Autism Rights advocate named Elizabeth Picciuto accused the organization of treating autism as a disease that needs to be cured rather than a difference that needs to be understood and accepted.[5]

On May 1, 2015 Bob Wright resigned as chairmen of the organization. He was succeeded by Brian Kelly who had served as Chair of the Audit and Family Services Committees for the organization and is co-founder of Eastern Real Estate LLC. Both Bob Wright and his wife Suzanne remain on the board as co-founders.[6]

On November 2, 2015 Suzanne Wright took a leave of absence following a diagnosis of pancreatic cancer.

Activities

Autism Speaks is an autism organization that, along with its predecessor organizations, has been a source of funding directed towards the causes and treatment of autism spectrum disorders; it also conducts awareness and outreach activities aimed at families, governments, and the public.[1] In a 2006 press release, Autism Speaks stated as its goal "to accelerate and fund biomedical research into the causes, prevention, treatments and cure for autism spectrum disorders; to increase awareness of the disorder; and to improve the quality of life of affected individuals and their families".[7]

Research

Autism Speaks and its predecessor organizations have raised public awareness for autism research, raised funds directly for research, and lobbied Congress to leverage the privately raised money with much greater public funds. From 1997 to 2006 their advocacy in the areas of treatment and environmental factors shifted research priorities in the U.S. from basic research to translational and clinical research, with less emphasis on the underlying biology and greater emphasis on putting what was known to practical use.[8]

Autism Speaks supports research in four main areas:[9]

Autism Speaks funds the Autism Genetic Resource Exchange (AGRE), a DNA repository and family registry of genotypic and phenotypic information that is available to autism researchers worldwide.[10] The AGRE was established in the 1990s by a predecessor organization, Cure Autism Now.[11]

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.[12]

Autism Speaks supports the Clinical Trials Network, which focuses on new pharmacological treatments. It also supports the Toddler Treatment Network, which develops new interventions for infants and toddlers.[9]

Autism Speaks believes that vaccines have been shown to be safe for most children and are important for preventing serious diseases such as measles and mumps. It recognizes that some individuals may have adverse reactions to, or respond poorly to, vaccines, and advocates research into identifying any subgroups of such individuals and mechanisms behind any such reactions.[9] This has strained relations between the Wrights and their daughter Katie, the mother of an autistic boy. Katie believes her son's autism was caused by thiomersal, a preservative that was formerly common in children's vaccines in the United States; no major scientific studies have confirmed this hypothesis.[2]

Since June 2014, Autism Speaks partnered with Google on a project called Mssng (Pronounced “missing.”) Previously known as The Autism Speaks Ten Thousand Genomes Program (AUT10K,) it is an open source research platform for autism that aims to collect and study the DNA of 10,000 families that have been affected by autism. The goal is to create the world’s largest database of sequenced genomic information of Autism run on Google’s cloud-based genome database, Google Genomics. In December 2014, the pair announced a launch that will allow worldwide access the research for further collaboration and genome analysis.[13]

Awareness

On April 2, 2013 the Cloth Hall, Ypres, Belgium with Nieuwerck was lit up blue for the World Autism Day.

The Walk for Autism Research program conducts an annual autism walk on Long Island, New York; the walk attracted 20,000 participants in October, 2006, and raised $2 million.[14]

Suzanne Wright appeared on NBC's The Today Show to discuss the Ad Council campaign launched in conjunction with Autism Speaks to raise autism awareness and to highlight the importance of early detection.[15] The Today Show aired a week-long series of stories in February, 2005, highlighting autism research and treatment.[16]

Autism Speaks sponsored and distributes the short film Autism Every Day, produced by Lauren Thierry and Eric Solomon.[17]

Mergers

Autism Speaks, through a series of mergers, has combined organizations that funded peer reviewed research into genetic causes, championed alternative theories and therapies, and advocated for individuals with autism.[2]

National Alliance for Autism Research

In early 2006, a year after its founding, Autism Speaks merged with the National Alliance for Autism Research (NAAR).[18] NAAR, founded in 1994, was the first U.S. nonprofit organization dedicated to supporting research into causes, treatment, and cures for autism spectrum disorders.[19] The founders comprised a small group of parents, including two psychiatrists, a lawyer and a chemistry professor.[20]

NAAR raised money to provide research grants focusing on autism, and had committed in 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.

Cure Autism Now

In 2007, Autism Speaks completed its merger with Cure Autism Now (CAN).[21] CAN was founded in 1995 by Jonathan Shestack and Portia Iversen, the parents of a child with autism whose story is told in the book Strange Son. It was an organization of parents, doctors and scientists devoted to research to prevent, treat and cure autism.[22] Iversen and Shestack were invited to join NAAR's board but declined, impatient with what they considered NAAR's excess of caution in staying with the scientific establishment.[23] In 1997 CAN established the Autism Genetic Resource Exchange; CAN was successful in establishing AGRE despite an initially negative reaction from scientists who were concerned whether CAN could carry out rigorous work, and despite what CAN considered to be scientists' reluctance to share their data.[23] During its existence, Cure Autism Now provided more than $39 million for research grants and other programs. Its flagship programs included the AGRE, Autism Treatment Network, Clinical Trials Network, and Innovative Technology for Autism. It also funded education and outreach efforts.[21]

Autism Coalition for Research and Education

Autism Speaks is also allied with Autism Coalition for Research and Education, an advocacy group.[2]

Controversies

View of autism as a disease

Autism Speaks's advocacy has been based on the mainstream medical view of autism as a disease: “This disease has taken our children away. It’s time to get them back.” This is a view that "many but not all autism scientists would endorse."[24] In contrast, some autistic activists have promoted the idea of neurodiversity and the social model of disability, asserting that people with autism are "different but not diseased" and challenging "how we conceptualize such medical conditions."[24] They say the logo for Autism Speaks, a puzzle piece, reflects the perspective of a parent or caregiver to whom the autistic person is a problem to be solved or an anomaly to be 'fit in' rather than an autonomous individual deserving of dignity on their own terms.

In January 2008, an autistic blogger, upset with the portrayal of autism at the Autism Speaks' website, "Getting the Word Out",[25] created a critical parody website titled "Getting the Truth Out".[26] It was later taken down in response to legal demands from Autism Speaks to stop using the Autism Speaks name and logo without permission. Autism Speaks claimed the spoof could confuse people looking for information about autism. New parody sites were later launched by Gareth Nelson, founder of the autism rights group Aspies for Freedom.[27]

In September 2009, Autism Speaks screened the short video I Am Autism at its annual World Focus on Autism event; the video was created by Alfonso Cuarón and by Autism Speaks board member Billy Mann. With narration closely resembling the 1954 short Taming the Crippler, which personified poliomyelitis as a kind of grim reaper figure, I Am Autism has been criticized by autism advocates and researchers for its negative portrayal of autism.[28][29]

Position on vaccines

Autism Speaks now takes the position that "Many studies have examined possible links between vaccination and increased prevalence of autism," but that "these studies have not found a link between vaccines and autism" and that they "strongly encourage parents to have their children vaccinated for protection against serious disease."[30]

In the past, Autism Speaks had assigned a high priority to research into the now-discredited claim that immunization is associated with an increased risk of autism. This priority has raised concerns among parents and scientific researchers, because "...funding such research, in addition to being wasteful, unduly heightens parents' concerns about the safety of immunization."[31]

Alison Singer, a senior executive of Autism Speaks, resigned in January 2009 rather than vote for committing money to new research studies into vaccination and autism. The U.S. Interagency Autism Coordinating Committee, of which Singer was a member, voted against committing the research funds; this was contrary to the Autism Speaks policy on vaccine safety research. Singer said:

"There isn't an unlimited pot of money, and every dollar spent looking where we know the answer isn't is one less dollar we have to spend where we might find new answers. The fact is that vaccines save lives; they don't cause autism."[32]

She said that numerous scientific studies have disproved the link first suggested more than a decade ago and that Autism Speaks needs to "move on."[32] Later that year, along with NAAR's cofounder Karen London, Singer launched the Autism Science Foundation (ASF), a nonprofit organization supporting autism research premised on the principles that autism has a strong genetic component, that vaccines do not cause autism, and that evidence-based early diagnosis and intervention are critical.[33]

Eric London resigned from Autism Speaks's Scientific Affairs Committee in June 2009, saying that arguments that "there might be rare cases of 'biologically-plausible' vaccine involvement ... are misleading and disingenuous", and that Autism Speaks was "adversely impacting" autism research. London is a founding member of the ASF's Scientific Advisory Board.[34]

Rhetoric used

Autism Speaks sponsored and distributes the short film Autism Every Day, produced by Lauren Thierry and Eric Solomon.[17] Autism Speaks staff member Alison Singer was reportedly criticized for a scene in which she said, in the presence of her autistic daughter, that when faced with having to place the girl in a school that she deemed inadequate, she contemplated driving her car off a bridge with her child in the car.[35] Thierry said that these feelings were not unusual among the non-autistic mothers of autistic children.[36] According to the book Battleground: The Media, Thierry reportedly asked the parents featured in the film not to clean house, and the film crew showed up unexpectedly.[35][36]

In November 2013, Autism Speaks published an op-ed by co-founder Suzanne Wright.[37] Wright's statement sparked controversy among autistic people and their family members, with it being cited as using inaccurate statistics and being misrepresentative and exaggerated in its depiction of the lives of autistic people and their families.[38][39][40] It resulted in autistic author John Elder Robison resigning his association with the organization.[38][41]

See also

References

  1. 1 2 Singh J, Hallmayer J, Illes J (2007). "Interacting and paradoxical forces in neuroscience and society". Nat Rev Neurosci 8 (2): 153–60. doi:10.1038/nrn2073. PMC 1885680. PMID 17237806.
  2. 1 2 3 4 5 Gross J, Strom S (2007-06-18). "Autism debate strains a family and its charity". New York Times. Archived from the original on 15 October 2007. Retrieved 2007-10-09.
  3. ↑ "Yoko Ono named first Global Autism Ambassador". Archived from the original on 2010-04-05.
  4. ↑ "Autism Speaks and 'Wow! Wow! Wubbzy!' Team Up to Shine a Spotlight on World Autism Awareness Day". Autism Speaks press release. February 19, 2009.
  5. ↑ Picciuto, Elizabeth. "They Don’t Want an Autism Cure". The Daily Beast. Retrieved 1 March 2015.
  6. ↑ Autism Speaks Co-Founder Bob Wright to Step Down as Chairman Autism Speaks Website May 1, 2015
  7. ↑ "Cure Autism Now and Autism Speaks announce plans to combine operations" (Press release). Autism Speaks. 2006-11-29. Retrieved 2008-11-21.
  8. ↑ Singh J, Illes J, Lazzeroni L, Hallmayer J (2009). "Trends in US autism research funding". J Autism Dev Disord 39 (5): 788–95. doi:10.1007/s10803-008-0685-0. PMID 19148735.
  9. 1 2 3 Twachtman-Cullen D (2008). "Dr. Geraldine Dawson: setting the research agenda for Autism Speaks" (PDF). Autism Spectr Q (16): 8–11. Archived from the original (PDF) on 2009-05-30.
  10. ↑ 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:10.1086/321292. PMC 1235320. PMID 11452364.
  11. ↑ Painter K (2004-01-12). "Science getting to roots of autism". USA Today. Retrieved 2008-11-16.
  12. ↑ Haroutunian V, Pickett J (2007). "Autism brain tissue banking". Brain Pathol 17 (4): 412–21. doi:10.1111/j.1750-3639.2007.00097.x. PMID 17919127.
  13. ↑ "‘MSSNG’ Project: Google’s Partnership with Controversial Autism Speaks". CloudWedge.
  14. ↑ "Long Island Walk holds enthusiastic 2007 kick off". Autism Speaks. 2007. Archived from the original on 7 October 2008. Retrieved 2008-11-21.
  15. ↑ "Suzanne Wright discusses new Autism Speaks awareness campaign on Today Show, MSNBC". Autism Speaks. Retrieved 2008-11-21.
  16. ↑ "NBC networks to focus on autism". Autism Speaks. 2005-02-17. Archived from the original on 2 December 2007. Retrieved 2007-11-21.
  17. 1 2 Moore AS (2007-01-21). "Hard-hitting look at autism is being shown at Sundance". New York Times. Retrieved 2008-11-16.
  18. ↑ "Autism Speaks and the National Alliance for Autism Research complete merger" (Press release). Autism Speaks. 2006-02-13. Archived from the original on 21 November 2008. Retrieved 2008-11-21.
  19. ↑ "National Alliance for Autism Research: committed to accelerating biomedical autism research to unlock the mysteries of autism spectrum disorders". The Exceptional Parent. April 2002. pp. 103–5. Retrieved 2008-11-15.
  20. ↑ London E (1997). "A psychiatrist's journey from parent to founder of research advocacy organization". Psychiatr Times 14 (11).
  21. 1 2 "Autism Speaks and Cure Autism Now complete merger" (Press release). Autism Speaks. 2007-02-05. Archived from the original on 27 October 2007. Retrieved 2007-11-01.
  22. ↑ "How does the autistic brain work?". PBS. 2003-04-06. Archived from the original on 25 October 2008. Retrieved 2008-11-21.
  23. 1 2 Coukell A (Winter 2006). "You can hurry science". proto (Massachusetts General Hospital). pp. 26–31. Retrieved 2009-01-11.
  24. 1 2 Baron-Cohen S (2008). "Living Googles?" (PDF). Nature 454 (7205): 695–6. doi:10.1038/454695a. Retrieved 2009-06-08.
  25. ↑ http://web.archive.org/web/20070630013301/http://www.gettingthewordout.org/home.php
  26. ↑ http://web.archive.org/web/20071018030910/http://gettingthetruthout.org/
  27. ↑ Biever C (2008-02-01). "Voices of autism 'silenced' by charity". New Scientist. Archived from the original on 4 February 2008. Retrieved 2008-02-05.
  28. ↑ Biever C (2009-09-29). "'Poetic' autism film divides campaigners". New Scientist. Archived from the original on 3 October 2009. Retrieved 2009-10-08.
  29. ↑ Wallis C (2009-11-06). "'I Am Autism': an advocacy video sparks protest". TIME. Archived from the original on 9 November 2009. Retrieved 2009-12-07.
  30. ↑ "Vaccines and Autism". Retrieved 2014-08-01.
  31. ↑ Stokstad E (2009). "Resignations highlight disagreement on vaccines in autism group". Science 325 (5937): 135. doi:10.1126/science.325_135a. PMID 19589974.
  32. 1 2 Luscombe R (2009-01-25). "Charity chief quits over autism row". Observer (London). Archived from the original on 29 January 2009. Retrieved 2009-02-01.
  33. ↑ "Autism Science Foundation launches operations: new advocacy group will focus on non-vaccine-related autism research" (Press release). Autism Science Foundation. 2009-04-18. Retrieved 2009-04-20.
  34. ↑ Kalb C (2009-07-01). "Another resignation at Autism Speaks". The Human Condition. Newsweek. Retrieved 2009-07-03.
  35. 1 2 Andersen, Robin (2008). Battleground: The Media 1. Westport, Connecticut: Greenwood Press. pp. 127–128. ISBN 978-0-313-34168-7. LCCN 2007032454. OCLC 230095012. Retrieved 2012-12-06.
  36. 1 2 Liss J (2006-07-11). "Autism: the art of compassionate living". WireTap. Retrieved 2008-03-21.
  37. ↑ http://www.autismspeaks.org/news/news-item/autism-speaks-washington-call-action
  38. 1 2 Willingham, Emily (2013-11-13). "Why Autism Speaks Doesn't Speak for Me". Forbes. Retrieved 2014-12-31.
  39. ↑ Berrington, Lucy (2013-11-14). "A Reporter's Guide to the Autism Speaks Debacle". Asperger's Alive. Psychology Today (Sussex Publishers). Retrieved 2014-12-31.
  40. ↑ Autistic Self Advocacy Network; Association for Autistic Community (2013-11-12). "ASAN-AAC Statement on Autism Speaks’ DC "Policy Summit"". Autistic Self Advocacy Network. Washington, DC.
  41. ↑ I resign my roles at Autism Speaks

External links

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