Autism Speaks

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Autism Speaks
Autism Speaks Logo.jpg
Founded February 11, 2005; 11 years ago (2005-02-11)[1]
Founders Bob Wright,
Suzanne Wright[2]
Merger of National Alliance for Autism Research,[3]
Cure Autism Now[4]
20-2329938[5]
Legal status 501(c)(3) nonprofit organization
Headquarters New York City[5]
Coordinates 40°44′52″N 73°59′04″W / 40.7477494°N 73.9843983°W / 40.7477494; -73.9843983Coordinates: 40°44′52″N 73°59′04″W / 40.7477494°N 73.9843983°W / 40.7477494; -73.9843983
Services Research, awareness, family services, advocacy.[5]
Brian Kelly[6]
Executive V.P. – Programs and Services
Lisa Goring[7]
Gareth Thomas[7]
Subsidiaries Delivering Scientific Innovation for Autism LLC,
Advancing Futures for Adults with Autism,
Autism Speaks Canada[5]
Revenue (2013)
$63,786,909[5]
Expenses (2013) $62,401,349[5]
Employees (2013)
291[5]
Volunteers (2013)
450,000[5]
Slogan Autism Speaks. It's Time to Listen.
Mission To change the future for all who struggle with autism spectrum disorder.[5]
Website www.autismspeaks.org

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.[8] 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.[9]

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."[10] Since its founding, Autism Speaks has merged with three existing autism organizations and raised millions of dollars for autism research.[9]

Since February 2009, Autism Speaks has used the Wubbzy character from Wow! Wow! Wubbzy! as a mascot.[11]

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.[12]

On May 1, 2015 Bob Wright resigned as chairman 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]

Suzanne Wright took a leave of absence on 2 November 2015 following a diagnosis of pancreatic cancer, due to which she fell gravely ill and died on 29 July 2016.[13]

Activities[edit]

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.[8] 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".[14]

Research[edit]

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.[15]

Autism Speaks supports research in four main areas:[16]

  • Etiology includes genetic and environmental factors that may cause autism. This research includes searches for autism susceptibility genes, animal models for autism, environmental toxins, and maternal viral infections.
  • Biology studies cells, the brain, and the body. This focuses on brain development and includes the Autism Tissue Program discussed further below.
  • Diagnosis includes epidemiology, early diagnosis, and biomarkers.
  • Autism therapies include medication, behavioral, and psychological interventions. It includes treatments for co-occurring medical conditions in children which are unrelated to autism, such as sleep disorders and gastrointestinal conditions that may hinder behavioral interventions, along with treatments for older individuals, and complementary and alternative medicine.

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.[17] The AGRE was established in the 1990s by a predecessor organization, Cure Autism Now.[18]

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.[19]

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.[16]

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.[16] 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.[9]

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.[20]

Awareness[edit]

On April 2, 2013 the Cloth Hall, Ypres, Belgium with Nieuwerck (nl) 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.[21]

Ad Council launched a campaign in conjunction with Autism Speaks to raise autism awareness and to highlight the importance of early detection.[22] In February 2005, The Today Show aired a week-long series of stories highlighting autism research and treatment.[23]

Autism Speaks sponsored and distributes the short film Autism Every Day, produced by Lauren Thierry and Eric Solomon.[24]

In December 2007, Autism Speaks' founder Suzanne Wright met with Sheikha Moza bint Nasser of Qatar to urge the country to sponsor a United Nations resolution recognizing World Autism Awareness Day.[25] Qatar introduced the resolution, and the resolution was passed and adopted without a vote by the United Nations General Assembly, primarily as a supplement to previous United Nations initiatives to improve human rights.[26]

Wright helped launch the Autism Speaks' Light It Up Blue campaign and the annual World Focus on Autism event.[27]

Mergers[edit]

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.[9]

National Alliance for Autism Research[edit]

In early 2006, a year after its founding, Autism Speaks merged with the National Alliance for Autism Research (NAAR).[3] NAAR, founded in 1994, was the first U.S. nonprofit organization dedicated to supporting research into causes, treatment, and cures for autism spectrum disorders.[28] The founders comprised a small group of parents, including two psychiatrists, a lawyer and a chemistry professor.[29]

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[edit]

In 2007, Autism Speaks completed its merger with Cure Autism Now (CAN).[4] 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.[30] 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.[31] 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.[31] 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.[4]

Autism Coalition for Research and Education[edit]

Autism Speaks is also allied with Autism Coalition for Research and Education, an advocacy group.[9]

Controversies[edit]

View of autism as a disease[edit]

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."[32] 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."[32]

In January 2008, an autistic blogger, upset with the portrayal of autism at the Autism Speaks' website, "Getting the Word Out",[33] created a critical parody website titled "Getting the Truth Out".[34] 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.[35]

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.[36][37]

Position on vaccines[edit]

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."[38]

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."[39]

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."[40]

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."[40] 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.[41]

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.[42]

Rhetoric used[edit]

Autism Speaks sponsored and distributes the short film Autism Every Day, produced by Lauren Thierry and Eric Solomon.[24] 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.[43] Thierry said that these feelings were not unusual among the non-autistic mothers of autistic children.[44] 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.[43][44]

In November 2013, Autism Speaks published an op-ed by co-founder Suzanne Wright.[45] autistic people and their families criticized Wright's statement, saying it used inaccurate statistics and was unrepresentative and exaggerated in its depiction of the lives of autistic people and their families.[46][47][48] Autistic author John Elder Robison said that Wright's tone and message was psychologically destructive to autistic people.[46][49] Robison said that Wright's message is that autistic people are defective, diseased, part of an epidemic, and problems for parents or society.[49] Robison resigned from his role at Autism Speaks because he could no longer advocate for an organization that repeatedly fails to connect to people with autism and their families.[49]

Financial spending[edit]

In 2009, Disability Scoop questioned Autism Speaks about its chief science officer, Geri Dawson, who received $669,751 in compensation in 2008, including $269,721 to relocate her family from Washington to North Carolina.[50] Autism Speaks responding that Dr. Dawson's compensation was in the mid-range for executives with similar positions in the nonprofit health sector.[50] Autism Speaks said that Dr. Dawson's move benefited Autism Speaks because she would be more accessible to its offices, science divisions, government health agencies in Washington, D.C., and her new position at the University of North Carolina at Chapel Hill.[50]

Compared to other autism-focused nonprofit organizations, Autism Speaks spends a smaller percentage of its revenue on furthering its mission. According to a report by The Daily Beast, 70.9 percent of Autism Speaks' revenue is devoted to directly furthering its mission, compared to 79.8 percent of Autistics Self-Advocacy Network's revenue and 91.5 percent of Autism Science Foundation's revenue.[51]

In 2012, Autism Speaks spent $2,252,334 for the salary of current officers, directors, trustees, and key employees, which the Daily Beast portrayed as controversial. The former president of Autism Speaks, Mark Roithmayr, had a salary of $436,314 in 2012, and Chief Science Officer Geraldine Dawson earned $465,671.[52]

Charity Navigator gave Autism Speaks a financial rating of two out of four stars.[51]

See also[edit]

References[edit]

  1. ^ "Autism Speaks Inc." Division of Corporations. Deleware Department of State. Accessed on February 23, 2016.
  2. ^ "About Us". Autism Speaks. Accessed on February 23, 2016.
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  4. ^ a b c "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. 
  5. ^ a b c d e f g h i "Form 990: Return of Organization Exempt from Income Tax". Autism Speaks. Guidestar. December 31, 2013.
  6. ^ a b Autism Speaks Co-Founder Bob Wright to Step Down as Chairman". Autism Speaks. May 1, 2015.
  7. ^ a b "Leadership". Autism Speaks. Accessed on February 23, 2016.
  8. ^ a b 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 1885680free to read. PMID 17237806. 
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  11. ^ "Autism Speaks and 'Wow! Wow! Wubbzy!' Team Up to Shine a Spotlight on World Autism Awareness Day". Autism Speaks press release. February 19, 2009. 
  12. ^ Picciuto, Elizabeth. "They Don't Want an Autism Cure". The Daily Beast. Retrieved 1 March 2015. 
  13. ^ Kauffman, Ellie (30 July 2016). "Suzanne Wright, autism advocate, dies at 69". CNN. Retrieved 30 July 2016. 
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  20. ^ "'MSSNG' Project: Google's Partnership with Controversial Autism Speaks". CloudWedge. 
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  33. ^ http://web.archive.org/web/20070630013301/http://www.gettingthewordout.org/home.php
  34. ^ http://web.archive.org/web/20071018030910/http://gettingthetruthout.org/
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  38. ^ "Vaccines and Autism". Retrieved 2014-08-01. 
  39. ^ Stokstad E (2009). "Resignations highlight disagreement on vaccines in autism group". Science. 325 (5937): 135. doi:10.1126/science.325_135a. PMID 19589974. 
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  41. ^ "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. 
  42. ^ Kalb C (2009-07-01). "Another resignation at Autism Speaks". The Human Condition. Newsweek. Retrieved 2009-07-03. 
  43. ^ a b 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. 
  44. ^ a b Liss J (2006-07-11). "Autism: the art of compassionate living". WireTap. Retrieved 2008-03-21. 
  45. ^ Wright, Suzanne. "Autism Speaks to Washington - A Call for Action". Autism Speaks. November 11, 2013.
  46. ^ a b Willingham, Emily (13 November 2013). "Why Autism Speaks Doesn't Speak for Me". Forbes. Retrieved 31 December 2014. 
  47. ^ Berrington, Lucy (13 November 2013). "A Reporter's Guide to the Autism Speaks Debacle". Asperger's Alive. Psychology Today. Sussex Publishers. Retrieved 31 December 2014. 
  48. ^ Autistic Self Advocacy Network; Association for Autistic Community (12 November 2013). "ASAN-AAC Statement on Autism Speaks' DC "Policy Summit"". Autistic Self Advocacy Network. Washington, DC. 
  49. ^ a b c Robison, John Elder. "I resign my roles at Autism Speaks". November 13, 2013.
  50. ^ a b c Diament, Michelle (10 September 2009). "Top Earner At Autism Speaks Paid More Than $600,000". Disability Scoop. Retrieved 9 May 2016. 
  51. ^ a b Podkul, Alexander (17 June 2014). "Understanding the puzzle of Autism Speaks". Philanthropy Daily. Retrieved 9 May 2016. 
  52. ^ Shire, Emily (13 June 2014). ""Autism Speaks"- but Should Everyone Listen?". The Daily Beast. Retrieved 9 May 2016. 

External links[edit]