|Founded||February 11, 2005|
|Merger of||National Alliance for Autism Research,
Cure Autism Now
|Legal status||501(c)(3) nonprofit organization|
|Headquarters||New York City|
|Services||Research, awareness, family services, advocacy.|
Executive V.P. – Programs and Services
|Subsidiaries||Delivering Scientific Innovation for Autism LLC,
Advancing Futures for Adults with Autism,
Autism Speaks Canada
|Slogan||Autism Speaks. It's Time to Listen.|
|Mission||To change the future for all who struggle with autism spectrum disorder.|
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. 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.
In January 2008, child clinical psychologist Geraldine Dawson, PhD., became Autism Speaks's chief science officer. In April 2010, the organization named Yoko Ono its first "Global Autism Ambassador." Since its founding, Autism Speaks has merged with three existing autism organizations raising millions of dollars for autism research.
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.
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.
- 1 Activities
- 2 Mergers
- 3 Controversies
- 4 See also
- 5 References
- 6 External links
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. In a 2006 press release, Autism Speaks stated 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". In 2016, however, Autism Speaks removed curing autism from its mission statement.
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.
Autism Speaks supports research in four main areas:
- 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. The AGRE was established in the 1990s by a predecessor organization, Cure Autism Now.
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.
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.
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. 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.
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.
Ad Council launched a campaign in conjunction with Autism Speaks to raise autism awareness and to highlight the importance of early detection. In February 2005, The Today Show aired a week-long series of stories highlighting autism research and treatment.
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. 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.
Wright helped launch the Autism Speaks' Light It Up Blue campaign and the annual World Focus on Autism event.
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.
National Alliance for Autism Research
In early 2006, a year after its founding, Autism Speaks merged with the National Alliance for Autism Research (NAAR). NAAR, founded in 1994, was the first U.S. nonprofit organization dedicated to supporting research into causes, treatment, and cures for 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 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). 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. 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. 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. 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.
Autism Coalition for Research and Education
Autism Speaks is also allied with Autism Coalition for Research and Education, an advocacy group.
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." 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".
In January 2008, an autistic blogger, upset with the portrayal of autism at Autism Speaks's website, "Getting the Word Out", created a critical parody website titled "Getting the Truth Out". 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.
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.
In response to an editorial by Steve Silberman in the Los Angeles Times criticizing Autism Speaks, then-president Liz Feld stated that one-third of people with autism also have a seizure disorder, half suffer serious digestive complications, 49 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.
Position on 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".
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."
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". Later that year, 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.
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.
Autism Speaks now takes the position that studies into the matter "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".
Autism Speaks sponsored and distributes the short film Autism Every Day, produced by Lauren Thierry and Eric Solomon. 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. Thierry said that these feelings were not unusual among non-autistic mothers of autistic children. 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.
In November 2013, Autism Speaks published an op-ed by co-founder Suzanne Wright. 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. 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.".
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.
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 Autistics Self-Advocacy Network's revenue and 91.5% of Autism Science Foundation's revenue.
In 2012, Autism Speaks spent $2,252,334 on salaries 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.
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