Autism Speaks Inc. is an American non-profit autism awareness organization and the largest autism research organization in the United States.Charity Navigator Search Results charitynavigator.org It 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 and his wife Suzanne, a year after their grandson Christian was diagnosed with autism. The same year as its founding, the organization merged with Autism Coalition for Research and Education. It then merged with the National Alliance for Autism Research (NAAR) in 2006 and Cure Autism Now (CAN) in 2007.
Members of the autistic rights and neurodiversity movements do not see autism as a disease that needs to be cured, and have criticized Autism Speaks for seeking a cure. The word "cure" was dropped from its mission statement in 2016. Autism Speaks has also been criticized by some activists, advocates, and researchers for perpetuating stigma against autistic people, promoting pseudoscience, excluding autistic people from decision-making, and continuing to fund genetic research (which some critics assign a low priority to and others fear may be used to seek a cure or lead to the development of a prenatal test). Autism Speaks previously funded research examining an alleged link between vaccines and autism; the organization formally accepted the scientific consensus that no such link exists in 2015.
History
Autism Speaks 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. The organization was established with a $25 million donation from The Home Depot founder Bernie Marcus, who sat on its board of directors for some years. Since its founding, Autism Speaks has merged with three existing autism organizations.
Autism Speaks has combined organizations that funded peer-reviewed research into genetic causes, promoted alternative theories and therapies, and advocated for people with autism. In 2005, Autism Speaks merged with the Autism Coalition for Research and Education. In early 2006, a year after its founding, Autism Speaks merged with 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 were a small group of parents, including two psychiatrists, a lawyer and a chemistry professor. In 2007, Autism Speaks completed its merger with Cure Autism Now (CAN). CAN was founded in 1995 by Jonathan Shestack and Portia Iversen.
In January 2008, child clinical psychologist Geraldine Dawson became Autism Speaks' chief science officer. In April 2010, the organization named Yoko Ono its first "Global Autism Ambassador." In 2009, Autism Speaks used the "Wubbzy" character from Wow! Wow! Wubbzy! to promote World Autism Awareness Day. In 2019, Autism Speaks featured the autistic character Julia from Sesame Street in public service announcements (PSAs) promoting early autism screening. The use of Julia in the PSAs prompted the Autistic Self Advocacy Network (ASAN), an autistic-led nonprofit organization, to end its years-long collaboration with the show's production company. ASAN objected to the PSAs promoting Autism Speaks' guide for families of newly diagnosed children (the "100 Day Kit"), which it criticized for lacking information about communication supports, using stigmatizing language, and promoting compliance-based therapies and pseudoscientific diets.
In May 2015, Bob Wright resigned as chairman of the organization and was succeeded by Brian Kelly. Co-founder Suzanne Wright took a leave of absence in November 2015, following a diagnosis of pancreatic cancer. She died in July 2016.
Mark Roithmayr led Autism Speaks from 2005 to 2012. In June 2012, he was succeeded by Liz Feld who had joined the organization the same year as executive vice president of strategic communications before she was promoted to become the president. Feld was succeeded by Angela Timashenka Geiger who served in the position beginning in February 2016. In October 2021, Autism Speaks appointed Keith Wargo as its new president and CEO.
In 2024, Autism Speaks Canada, the Canadian arm of the organization, announced that it would be shutting down effective January 31, 2025. The organization said that the United States branch would continue operation.
Activities
Autism Speaks, along with its predecessor organizations, has been a source of funding for research into the causes and treatment of autism spectrum disorder; it also conducts awareness and outreach activities aimed at families, governments and the public.
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.
As of 2008, Autism Speaks supported 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 and the National Institute of Mental Health fund the Autism Genetic Resource Exchange (AGRE), a nonprofit DNA repository and family registry of genotypic and phenotypic information that is available to autism researchers worldwide. AGRE was established in the late 1990s by researchers and the National Institutes of Health in collaboration with CAN.
Autism Speaks previously funded the Autism Tissue Program, a network of researchers that managed and distributed brain tissues collected post-mortem from autistic people and their family members. Such donations are rare and a vital component of research into the causes of autism. In 2014, all functions of the Autism Tissue Program were rolled over into Autism BrainNet, which is jointly funded by Autism Speaks and the Simons Foundation.
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.
Since June 2014, Autism Speaks has 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 they would allow worldwide access to the research for further collaboration and genome analysis. Autism Speaks' other partners on the project include The Hospital for Sick Children and DNAStack. Mssng has been criticized by some autistic individuals and advocates for using a title that implies autistic people are incomplete, excluding the autistic community from the decision-making process, and spending money on research unlikely to have any impact on the lives of autistic people in the near future. Some autistic individuals and advocates have also labeled the project eugenic and claimed its primary goal is to develop a cure or prenatal test for autism. In 2021, Tom Frazier (then Autism Speaks' chief science officer) disputed those characterizations and stated, "The project really is about actually trying to understand the biology of people with autism so that we can identify the kinds of interventions and supports that they might need."
Awareness, media and events
Autism Speaks sponsored and distributed the 2006 short documentary film Autism Every Day, produced by Lauren Thierry and Eric Solomon. Autism Speaks staff member Alison Singer was 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 for autistic children, she contemplated putting her child in her car and driving off a bridge. Thierry said that these feelings were not unusual among non-autistic mothers of autistic children. According to the 2008 book Battleground: The Media by Robin Andersen, Thierry instructed the families she interviewed not to do their hair, vacuum, or have therapists present, and appeared with her film crew at homes without preliminary preparations, in order to "authentically" capture the difficulties of life with autistic children, such as autistic children having meltdowns or physically struggling with parents.
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, which 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. Light It Up Blue is a campaign to raise awareness of autism in support of both World Autism Awareness Day, observed on April 2, and the beginning of Autism Awareness Month in the United States. As part of the campaign, statues and buildings – including the Empire State Building in New York City and Willis Tower in Chicago along with the CN Tower in Toronto – are among more than 100 structures in at least 16 U.S. cities and nine countries around the world lit up in blue on the evening of April 1, 2010. Autism Speaks volunteers and supporters began the day at the New York Stock Exchange by ringing the opening bell in what has become a yearly tradition since 2008. In 2011, despite efforts by Autism Speaks, the White House said it would not light up blue to mark World Autism Awareness Day. In 2017, President Donald Trump fulfilled a promise to Suzanne Wright (co-founder of Autism Speaks) by lighting the White House in blue.
In November 2013, Autism Speaks published an op-ed by co-founder Suzanne Wright titled "Autism Speaks to Washington - A Call for Action".Wright, Suzanne (November 11, 2013). "Autism Speaks to Washington – A Call for Action" . Autism Speaks. Some autistic people and their family members criticized the piece for using stigmatizing and pathologizing language, providing inaccurate statistics, and giving an unrepresentative and exaggerated depiction of the lives of autistic people and their families. John Elder Robison, a self-advocate who served on the science and treatment advisory boards of the organization, resigned following the op-ed. At the time of his resignation, Robison stated the following:
Controversies View of autism as a disease