Autism Speaks

The current logo for Autism Speaks.

### Official Website

autismspeaks.org  Please avoid donating. You can read the rest of the article for more info.

Autism Speaks Inc. is a non-profit autism 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 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 in 2006 and Cure Autism Now in 2007.

It is widely known among the Autism Spectrum Disorder (ASD) community for its controversy, including the "I Am Autism" ad of 2009. The autism rights movement and neurodiversity 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, but some people still regularly use the term.

## 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 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. 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." Autism Speaks has used the "Wubbzy" character from *Wow! Wow! Wubbzy!* as a mascot. In 2019, Autism Speaks featured Julia from *Sesame Street* 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 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.

## Views

### View of autism as a disease

Autism Speaks' past 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, autistic activists have promoted the idea of neurodiversity and the social model of disability, asserting that autistic people 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' 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 Gwen 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 created by Alfonso Cuarón and by Autism Speaks board member Billy Mann 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 in the *Los Angeles Times* criticizing Autism Speaks, then-president Liz Feld stated that one-third of autistic people also have a seizure disorder, half have 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 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 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 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 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, 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, 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."

## Donation controversy

Only 1% of Autism Speaks’ budget goes towards the “Family Service” grants that are the organization’s means of funding services. Autism Speaks spends 20x as much—20%—on fundraising. Although Autism Speaks has not prioritized services with a practical impact for families and individuals in its budget, its rates of executive pay are the highest in the autism world: some salaries exceed $600,000 a year.

## References

1. ↑ 1.0 1.1 1.2 1.3 1.4 https://en.wikipedia.org/wiki/Autism\_Speaks
2. ↑ https://www.youtube.com/watch?v=9UgLnWJFGHQ
3. ↑ https://autisticadvocacy.org/wp-content/uploads/2017/04/AutismSpeaksFlyer2020.pdf
Disclaimer: The second reference linking to the YouTube video contains some material that can appear as offensive to some people. Please watch it with caution.