Autism Speaks

Autism Speaks Inc. (AS) is the largest autism advocacy organization in the United States.[7] It 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 his wife Suzanne, a year after their grandson Christian was diagnosed with autism.[9]

Autism Speaks
FoundedFebruary 11, 2005 (2005-02-11)[1]
FoundersBob Wright,
Suzanne Wright[2]
Merger ofAutism Coalition for Research and Education,[2] National Alliance for Autism Research,[3]
Cure Autism Now[4]
20-2329938[5]
Legal status501(c)(3) nonprofit organization
PurposeEnhancing lives today and accelerating a spectrum of solutions for tomorrow.[5]
HeadquartersNew York City[5]
Coordinates40.7477494°N 73.9843983°W / 40.7477494; -73.9843983
ServicesScience program, awareness, family services, advocacy.[5]
Angela Geiger[6]
Kevin Roy[6]
Andy Shih[6]
SubsidiariesDelivering Scientific Innovation for Autism LLC,
Advancing Futures for Adults with Autism Inc,
Autism Speaks Canada[5]
Revenue (2016)
$47,556,499[5]
Expenses (2016)$46,739,673[5]
Employees (2016)
263[5]
Volunteers (2016)
162,000[5]
Websitewww.autismspeaks.org

Autism Speaks has been the focus of controversy; over 60 disability rights organizations have condemned the organization for failing to represent autistic people, and for exploitative practices.[10] The autism rights movement and neurodiversity advocates see autism as a difference rather than a disease that needs to be cured[11][12] and have criticized Autism Speaks for seeking a cure.[12][13][14][15] In response, former president Liz Feld has stated that one-third of people with autism also have a seizure disorder, half suffer serious digestive complications, 50 percent wander, and more than 30 percent are nonverbal, claiming that those difficulties can only be solved through medical research.[16] However, the word "cure" was dropped from its mission statement in 2016.[17]

History

In January 2008, child clinical psychologist Geraldine Dawson, PhD., became Autism Speaks' chief science officer. In April 2010, the organization named Yoko Ono its first "Global Autism Ambassador."[18] Since its founding, Autism Speaks has merged with three existing autism organizations.[9]

From February 2009 until 2020, Autism Speaks has used the "Wubbzy" character from Wow! Wow! Wubbzy! as a mascot.[19] Their current mascot is Julia from Sesame Street.

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. Bob Wright remains on the board as a co-founder.[20]

Co-founder Suzanne Wright took a leave of absence on November 2, 2015, following a diagnosis of pancreatic cancer. She died on July 29, 2016.[21]

In 2016, Autism Speaks took in $47.5 million, which was 18% less money than the previous year. Disability Scoop claimed that this change was a sharp drop in revenue. Aurelia Grayson, a spokeswoman for the nonprofit, attributed the slump to changes in funding for the group's MSSNG research program and declines in fundraising from Autism Speaks Walks.[22]

In 2018, Autism Speaks took in over $60 million in funding. However, grant money decreased by $3.1 million. AS claimed that it takes time to write grants for 2019.[23]

Activities

Autism Speaks is an autism organization that, along with its predecessor organizations, has been a source of funding for research into the causes and treatment of autism spectrum disorders; it also conducts awareness and outreach activities aimed at families, governments and the public.[8] In 2016, however, Autism Speaks removed curing autism from its mission statement.[24]

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.[25]

Autism Speaks supports research in four main areas:[26]

  • 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.[27] The AGRE was established in the 1990s by a predecessor organization, Cure Autism Now.[28]

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.[29]

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.[26]

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, or respond poorly, to vaccines, and advocates research into identifying any subgroups of such individuals and mechanisms behind any such reactions.[26] This has strained relations between the Wrights and their daughter Katie, the mother of a boy with autism. 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.[30]

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.[31]

Ad Council launched a campaign in conjunction with Autism Speaks to raise autism awareness and to highlight the importance of early detection.[32] In February 2005, The Today Show aired a week-long series of stories highlighting autism research and treatment.[33]

Autism Speaks sponsored and distributes the short film Autism Every Day, produced by Lauren Thierry and Eric Solomon.[34]

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.[35] 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.[36]

Wright helped launch the Autism Speaks' Light It Up Blue campaign and the annual World Focus on Autism event.[37]

Light It Up Blue

Light It Up Blue, annually observed on April 2, is dedicated to raising awareness of autism.[38] The initiative is generally associated with Autism Speaks.[39] It is intended to raise international awareness of autism in support of both World Autism Awareness Day and Autism Awareness Month in the United States.[40]

Iconic landmarks around the globe – including the Empire State Building in New York City and Willis Tower in Chicago along with the CN Tower in Toronto – as well as airports, bridges, museums, concert halls, restaurants, hospitals,[41] and retail stores, are among more than 100 structures in over 16 U.S. cities and nine countries around the world lit up in bright blue on the evening of April 1, 2010 – the first night of Autism Awareness Month in the United States and the eve of World Autism Awareness Day (WAAD).[42]

The White House lit in blue in honor of World Autism Awareness Day, 2017

On April 2, 2010, the third annual World Autism Awareness Day was celebrated at the New York Stock Exchange (NYSE) where Autism Speaks volunteers and supporters opened the day by ringing the NYSE opening bell.[43]

In 2011, despite efforts by Autism Speaks, the White House said it would not light up blue in honor of World Autism Awareness Day.[44] However, in 2017 President Donald Trump fulfilled a promise to Suzanne Wright (co-founder of Autism Speaks) by lighting the White House in blue.[45]

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.[9]

National Alliance for Autism Research

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.[46] The founders comprised a small group of parents, including two psychiatrists, a lawyer and a chemistry professor.[47]

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).[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.[48] 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.[49] 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.[49] 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

In 2005, Autism Speaks merged with the Autism Coalition for Research and Education.[50]

Controversies

View of autism as a disease
See also: Controversies in autism § Pathology paradigm

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."[51] 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 they challenge "how we conceptualize such medical conditions."[51]

In January 2008, an autistic blogger, upset with the portrayal of autism at Autism Speaks's website, "Getting the Word Out",[52] created a critical parody website titled "Getting the Truth Out".[53] It was later taken down in response to legal demands from Autism Speaks to stop using its name and logo without permission. Autism Speaks said 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.[54]

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 polio as a kind of grim reaper figure, I Am Autism has been criticized by autism advocates and researchers for its negative portrayal of autism.[55][56]

In response to an editorial by Steve Silberman in the Los Angeles Times criticizing Autism Speaks,[14] then-president Liz Feld stated that one-third of people with autism also have a seizure disorder, half suffer serious digestive complications, 50 percent wander, and more than 30 percent are nonverbal. Feld also discussed Autism Speaks' legal achievements in providing families of those affected with autism more financial assistance and funding, and the various services and awareness initiatives the organization provided.[16]

Position on vaccines
See also: Causes of autism § Vaccines

Autism Speaks formerly assigned a high priority to research into the now-discredited claim that immunization is associated with an increased risk of autism. This 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."[57]

Alison Singer, a senior executive of Autism Speaks, resigned in January 2009 rather than vote to commit money to new studies of vaccination and autism. The U.S. Interagency Autism Coordinating Committee, of which Singer was a member, voted against committing the funds; this was contrary to the Autism Speaks policy on vaccine safety research. Singer said that "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."[58]

Singer said that numerous scientific studies have disproved the link first suggested more than a decade ago and that Autism Speaks needs to "move on".[58] Later in 2009, along with NAAR's co-founder 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.[59] Autism Speaks' founder Bob Wright called Singer's resignation "disappointing and sad", and that it is possible that autism is caused by vaccines, though this claim is scientifically inaccurate and has been rejected by all reputable medical organizations.[60]

Eric London, a founding member of the Autism Science Foundation's Scientific Advisory Board, resigned from Autism Speaks' 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.[61]

In March 2010, Autism Speaks said it would not completely abandon the idea that vaccines could cause autism and that it would support "research to determine whether subsets of individuals might be at increased risk for developing autism symptoms following vaccination".[62]

In September 2010, a study by the U.S. Centers for Disease Control and Prevention found exposure to thimerosal, a preservative that used to be added to vaccines, does not increase a child's risk of developing autism. Responding to the study, Autism Speaks' chief science officer said that the "study adds to a large body of evidence indicating that early thimerosal exposure through vaccination does not cause autism."[63]

In August 2014, Autism Speaks said "We strongly encourage parents to have their children vaccinated for protection against serious disease. We recognize that some parents still have concerns about vaccines, particularly if they have a child or relative with autism. We urge them to find a health practitioner who will consider their concerns and help them ensure the well-being of their child."[64]

In 2017, Autism Speaks took the position that "Each family has a unique experience with an autism diagnosis, and for some it corresponds with the timing of their child's vaccinations. At the same time, scientists have conducted extensive research over the last two decades to determine whether there is any link between childhood vaccinations and autism. The results of this research is clear: Vaccines do not cause autism."[65]

Rhetoric used

Autism Speaks sponsored and distributes the short film Autism Every Day, produced by Lauren Thierry and Eric Solomon.[34] 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 to be terrible, she contemplated driving her car off a bridge with her child in the car.[66] Thierry said that these feelings were not unusual among non-autistic mothers of autistic children.[67] According to the book Battleground: The Media, Thierry instructed the families she interviewed not to do their hair, vacuum or have therapists present, and appeared with her film at homes crew without preliminary preparations, in order to authentically capture the difficulties of life with autistic children, such as autistic children throwing tantrums or physically struggling with parents.[66][67]

In 2009, Singer responded by claiming that she made this comment because the New York State Department of Health recommended that her autistic daughter be placed in a school with very poor conditions, and did not want her daughter to suffer there. However, she deeply regretted phrasing her concerns in that manner. Singer also claimed that she reconciled with autism advocates to some extent, but still advocates for medical research on autism.[68]

In November 2013, Autism Speaks published an op-ed by co-founder Suzanne Wright.[69] Autistic people and their families criticized the piece for using inaccurate statistics and giving an unrepresentative and exaggerated depiction of the lives of autistic people and their families.[70][71][72] Autistic author John Elder Robison said that Wright's op-ed "articulates a view of the 'autism situation' that is very different from my own. She says things I would never say to people with autism and cannot in good conscience stand by. Given her role as leader of the organization, I am afraid it is my signal to exit the Autism Speaks stage." Robison resigned from Autism Speaks saying he could no longer support an organization that "fail(ed) to connect to the community it purports to represent."[73]

Financial spending

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. Autism Speaks responded that Dawson's compensation was mid-range for executives with similar positions in the nonprofit health sector, and that 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.[74]

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% of Autism Speaks's revenue is devoted to directly furthering its mission, compared to 79.8% of Autistic Self Advocacy Network's revenue and 91.5% of Autism Science Foundation's revenue.[75]

In 2012, Autism Speaks spent $2,252,334 on compensation for current officers, directors, trustees, and key employees, which The Daily Beast portrayed as controversial. Autism Speaks's former president Mark Roithmayr had a salary of $436,314 in 2012, and Chief Science Officer Geraldine Dawson earned $465,671.[76]

In 2016, Autism Speaks spent $2,375,591 on officers, directors, trustees, and key employees, including $110,000 of bonus and incentive compensation. Autism Speaks paid a $336,843 severance payment to Robert King, a $175,000 severance payment to John Gruber, and a $123,171 severance payment to Elizabeth Feld.[5]

In 2018, Autism Speaks spent $19.6 million on employee benefits. Angela Geiger, the current president, earned more than $642,000, which was more than double the earnings of any other AS executive.[23]

Charity Navigator gave Autism Speaks a financial rating of two out of four stars.[75]

See also

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