|Founded||February 11, 2005; 13 years ago|
|Merger of||National Alliance for Autism Research,|
Cure Autism Now
|Tax ID no.||20-2329938|
|Legal status||501(c)(3) nonprofit organization|
|Headquarters||New York City|
|Coordinates||40.7477494°N 73.9843983°WCoordinates: 40.7477494°N 73.9843983°W|
|Services||Research, awareness, family services, advocacy.|
|President, Chief Executive Officer||Angela Geiger|
|Executive V.P., Advocacy||Kevin Roy|
|Senior V.P., Public Health and Inclusion||Andy Shih|
|Subsidiaries||Delivering Scientific Innovation for Autism LLC,|
Advancing Futures for Adults with Autism Inc,
Autism Speaks Canada
Some autism activists see autism as a difference rather than a disease and criticize Autism Speaks for seeking a cure rather than acceptance,accusing it of implicitly stigmatizing autistic people. The word “cure” was dropped from its mission statement in 2015.
Autism Speaks supported research into the discredited theory that autism is caused by vaccines, but as of 2017 acknowledges “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.”
- 5See also
- 7External links
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
See also: Medical model of autism
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 they challenge “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 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.
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
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.”
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.”
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”. 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. Autism Speaks’ founder Bob Wright called Singer’s resignation “disappointing and sad”, and that it is possible that autism is caused by vaccines.
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.
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”.
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.”
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.”
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.”
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 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.
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.”