Autism Speaks Inc. is an American non-profit

autism Autism, also known as autism spectrum disorder (ASD), is a neurodevelopmental disorder characterized by differences or difficulties in social communication and interaction, a preference for predictability and routine, sensory processing d ...

awareness organization and the largest autism research organization in the United States. 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 Robert Charles Wright (born April 23, 1943) is an American lawyer, businessman, lobbyist, and author. He is a former NBC executive, having served as president and CEO from 1986 to 2001, and chairman and CEO from 2001 until he retired in 2007. ...

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 The National Alliance for Autism Research (NAAR), based in Princeton, New Jersey, was a non-profit advocacy organization, founded by parents of children with autism concerned about the limited funding available for research. Origins and activities ...

in 2006 and Cure Autism Now in 2007. The

autism rights movement The autistic rights movement, also known as the autism acceptance movement, is a social movement allied with the disability rights movement. It emphasizes the neurodiversity paradigm, viewing autism as a set of naturally occurring variations in ...

and

neurodiversity The neurodiversity paradigm is a framework for understanding human brain function that considers the diversity within sensory processing, Motor skill, motor abilities, Social anxiety, social comfort, cognition, and Attention, focus as neurobiol ...

advocates 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.

History

Autism Speaks was founded in February 2005 by

, vice chairman of

General Electric General Electric Company (GE) was an American Multinational corporation, multinational Conglomerate (company), conglomerate founded in 1892, incorporated in the New York (state), state of New York and headquartered in Boston. Over the year ...

, 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 The Home Depot, Inc., often referred to as Home Depot, is an American multinational corporation, multinational home improvement retail corporation that sells tools, construction products, appliances, and services, including fuel and transportat ...

founder

Bernie Marcus Bernard Marcus (May 12, 1929 – November 4, 2024) was an American billionaire businessman. He co-founded Home Depot in 1978. He was the company's first CEO and first chairman until retiring in 2002. In November 2024, ''Forbes'' estimated his ne ...

, 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-review Peer review is the evaluation of work by one or more people with similar competencies as the producers of the work ( peers). It functions as a form of self-regulation by qualified members of a profession within the relevant field. Peer review ...

ed 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 the

(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. 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 Yoko Ono (, usually spelled in katakana as ; born February 18, 1933) is a Japanese multimedia artist, singer, songwriter, and peace activist. Her work also encompasses performance art and filmmaking. Ono grew up in Tokyo and moved to New York ...

its first "Global Autism Ambassador." Autism Speaks has used the "Wubbzy" character from ''

Wow! Wow! Wubbzy! ''Wow! Wow! Wubbzy!'' is an American animated children's educational television series created by Bob Boyle for Nickelodeon. The series was produced by Bolder Media (a joint venture of Frederator Studios and the Mixed Media Group) and Star ...

'' as a mascot. In 2019, Autism Speaks featured

Julia Julia may refer to: People *Julia (given name), including a list of people with the name *Julia (surname), including a list of people with the name *Julia gens, a patrician family of Ancient Rome *Julia (clairvoyant) (fl. 1689), lady's maid of Qu ...

from ''

Sesame Street ''Sesame Street'' is an American educational television, educational children's television series that combines live-action, sketch comedy, animation, and puppetry. It is produced by Sesame Workshop (known as the Children's Television Worksh ...

'' in PSAs promoting early autism screening. 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 The labour law concept of leave, specifically paid leave or, in some countries' long-form, a leave of absence, is an authorised prolonged absence from work, for any reason authorised by the workplace. When people "take leave" in this way, they ar ...

in November 2015, following a diagnosis of

pancreatic cancer Pancreatic cancer arises when cell (biology), cells in the pancreas, a glandular organ behind the stomach, begin to multiply out of control and form a Neoplasm, mass. These cancerous cells have the malignant, ability to invade other parts of ...

. 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 Autism, also known as autism spectrum disorder (ASD), is a neurodevelopmental disorder characterized by differences or difficulties in social communication and interaction, a preference for predictability and routine, sensory processing di ...

; 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 Etiology (; alternatively spelled aetiology or ætiology) is the study of causation or origination. The word is derived from the Greek word ''()'', meaning "giving a reason for" (). More completely, etiology is the study of the causes, origins ...

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 Biology is the scientific study of life and living organisms. It is a broad natural science that encompasses a wide range of fields and unifying principles that explain the structure, function, growth, History of life, origin, evolution, and ...

studies cells, the brain, and the body. This focuses on brain development and includes the Autism Tissue Program discussed further below. *

Diagnosis Diagnosis (: diagnoses) is the identification of the nature and cause of a certain phenomenon. Diagnosis is used in a lot of different academic discipline, disciplines, with variations in the use of logic, analytics, and experience, to determine " ...

includes

epidemiology Epidemiology is the study and analysis of the distribution (who, when, and where), patterns and Risk factor (epidemiology), determinants of health and disease conditions in a defined population, and application of this knowledge to prevent dise ...

, early diagnosis, and biomarkers. *

Autism therapies at its annual World Focus on Autism event. The video created by

Alfonso Cuarón Alfonso Cuarón Orozco ( ; ; born 28 November 1961) is a Mexican filmmaker. List of awards and nominations received by Alfonso Cuarón, His accolades include four Academy Awards, three Golden Globe Awards and seven BAFTA Awards. Cuarón made h ...

and by Autism Speaks board member

Billy Mann William Hort-Mann (né Isaiah Erlichman; born December 20, 1968) is an American record producer and songwriter. He is known for producing " 3 Is Family" by Dana Dawson in 1995 as well as ''Billboard'' Hot 100 top 40 hits such as " For You I ...

was criticized by autism advocates and researchers for its negative portrayal of autism. In response, the organization removed a link to the film from its website. In response to an editorial by

Steve Silberman Stephen Louis Silberman (December 23, 1957 – August 29, 2024) was an American writer for ''Wired (magazine), Wired'' magazine and was an editor and contributor there for more than two decades. In 2010, Silberman was awarded the American Associ ...

in the ''

Los Angeles Times The ''Los Angeles Times'' is an American Newspaper#Daily, daily newspaper that began publishing in Los Angeles, California, in 1881. Based in the Greater Los Angeles city of El Segundo, California, El Segundo since 2018, it is the List of new ...

'' criticizing Autism Speaks, then-president Liz Feld stated that one-third of autistic people also have a

seizure disorder Epilepsy is a group of non-communicable neurological disorders characterized by a tendency for recurrent, unprovoked seizures. A seizure is a sudden burst of abnormal electrical activity in the brain that can cause a variety of symptoms, rang ...

, half have serious digestive complications, 50 percent wander, and more than 30 percent are

nonverbal Nonverbal communication is the transmission of messages or signals through a nonverbal platform such as eye contact ( oculesics), body language ( kinesics), social distance ( proxemics), touch ( haptics), voice ( prosody and paralanguage), p ...

. Feld also discussed Autism Speaks' legal achievements in providing families of those who are autistic more financial assistance and funding, and the various services and awareness initiatives the organization provided. In October 2016, Autism Speaks removed curing autism as a goal in its mission statement. The new mission statement also removed words such as "struggle", "hardship" and "crisis" to instead read in part that "Autism Speaks is dedicated to promoting solutions, across the spectrum and throughout the lifespan, for the needs of individuals with autism and their families".

Position on vaccines

Autism Speaks formerly assigned a high priority to research into the now-discredited claim that

immunization Immunization, or immunisation, is the process by which an individual's immune system becomes fortified against an infectious agent (known as the antigen, immunogen). When this system is exposed to molecules that are foreign to the body, called ' ...

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 Alison Singer (née Tepper) is the president and founder of the Autism Science Foundation (ASF), a non-profit organization primarily focused on funding and advocating for medical research related to autism. She has also served on the Interagency ...

, 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 The Interagency Autism Coordinating Committee (IACC) is a United States federal advisory panel within the Department of Health and Human Services (HHS). It coordinates all efforts within HHS concerning autism spectrum disorder (ASD). The IACC was ...

, 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 in 2009, along with NAAR's co-founder Karen London, Singer launched the

Autism Science Foundation The Autism Science Foundation (ASF) is a non-profit organization whose stated goals are to fund evidence-based autism research and support families with autistic members. The organization was founded in April 2009 by Alison Tepper Singer, a for ...

, 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 said 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. 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 Thiomersal ( INN), or thimerosal ( USAN, JAN), also sold under the name merthiolate, is an organomercury compound. It is a well-established antiseptic and antifungal agent. The pharmaceutical corporation Eli Lilly and Company named it Merthi ...

, 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, the organization 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, they 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."

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 The University of North Carolina at Chapel Hill (UNC, UNC–Chapel Hill, or simply Carolina) is a public university, public research university in Chapel Hill, North Carolina, United States. Chartered in 1789, the university first began enrolli ...

. 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' former president Mark Roithmayr had a salary of $436,314 in 2012, and Chief Science Officer Geraldine Dawson earned $465,671. Compared to other autism-focused nonprofit organizations, Autism Speaks spends a smaller percentage of its revenue on furthering its mission. According to a 2014 report by ''

The Daily Beast ''The Daily Beast'' is an American news website focused on politics, media, and pop culture. Founded in 2008, the website is owned by IAC Inc. It has been characterized as a "high-end tabloid" by Noah Shachtman, the site's editor-in-chief ...

'', 70.9% of Autism Speaks' revenue is devoted to directly furthering its mission, compared to 79.8% of

Autistic Self Advocacy Network The Autistic Self Advocacy Network (ASAN) is an American 501(c)(3) nonprofit organization, nonprofit advocacy organization run by and for autistic individuals. ASAN advocates for the inclusion of autistic people in decisions that affect them, inc ...

's revenue and 91.5% of

's revenue. In 2018, Autism Speaks spent $19.6 million on employee benefits. Angela Geiger, the then president, earned more than $642,000, which was more than double the earnings of any other AS executive. As of 2020,

Charity Navigator Charity Navigator is a charity assessment organization that evaluates more than 230,000 charitable organizations based in the United States, operating as a 501(c)(3) organization. It provides insights into a nonprofit's financial stability, adh ...

gives Autism Speaks a rating of three out of four stars with a financial rating of 77 out of 100, and accountability and transparency rating of 97 out of 100.

References

External links

* {{Authority control Autism-related organizations based in the United States Organizations established in 2005 2005 establishments in New York City Mental health organizations based in New York (state) Ableism in the United States