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Autism Speaks

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Autism Speaks is a controversial autism advocacy organization in the United States. It sponsors autism research and raises awareness.

Autism Speaks is run almost entirely by non-autistic people.[1] Many of its goals are at odds with the goals autistic people have voiced for themselves.[2][3] Protests against Autism Speaks are common in the Autistic community.

Autism Speaks runs the "Light It Up Blue" campaign and uses a blue puzzle piece as a logo.

History[]

It was founded in February 2005 by Bob and Suzanne Wright a year after their grandson Christian was diagnosed with autism.[4]

In January 2008, child clinical psychologist Geraldine Dawson, Ph.D., became Autism Speaks chief science officer. In April 2010, the organization named Yoko Ono its first "Global Autism Ambassador."[5] Since its founding, Autism Speaks has merged with three existing autism organizations and raised millions of dollars for autism research.[4]

Controversies[]

"Autism Speaks is the only major medical or mental health nonprofit whose legitimacy is constantly challenged by a large percentage of the people affected by the condition they target." —John Elder Robison[6]

Autism Speaks pushed anti-vaccine myths long after it became clear that vaccines were not linked to autism. Its choice to continue talking about and spending money on a disproven idea led to several resignations.[7][8][9] It later changed its tune after some vaccine-preventable disease outbreaks.

Autism Speaks is known for supporting parents at the expense of their autistic children. Its ads often stigmatize autistic people, treating them as burdens that are difficult to love.

  • Its "I Am Autism" ad portrayed autism as an intangible monster that destroys parents' lives.[10]
  • Cofounder Suzanne Wright described autism as a national crisis, claiming that families of autistic kids are "not living" and experience terrible lives.[6]
  • Its "Autism Every Day" film, in which crews showed up early to create distressing situations for autistic children, featured a mother talking about how she considered driving herself and her daughter off a bridge. She said this while her daughter sat in the room.[11]
  • More recently, its 100 Day Kit encourages parents to grieve, blame autism for their problems, ignore their children's requests until they are satisfied with the way the request is made, and avoid accepting autism.[12]

Autism Speaks promotes ABA therapy, a popular form of behavior modification that uses punishment and/or reward to control behavior. Autistic people have long claimed that ABA is often cruel and psychologically damaging; emerging research links it to PTSD traits.[13][14][15][16] It has also featured the Judge Rotenberg Center, an institution criticized for the abuse and torture[17][18][19] of disabled people, as a resource for parents.[20]

Autism Speaks allegedly worked to block an amendment to the Autism CARES Act that would have increased the presence of autistic people on federal boards related to autism.[21]

Autism Speaks has also been criticized for paying its officers large salaries[22][23][24] and spending less money on its mission than other autism charities do.[21]

Changes[]

In 2016, Autism Speaks removed its highly controversial goal of "curing" autism from its mission statement. Instead, it said it would seek "solutions."[25][26]

Autism Speaks did some rebranding in 2020, recoloring its logo and tweaking its language around autism. Its critics describe these changes as superficial.[27][28]

See also[]

References[]

Some of these links, especially those regarding the Judge Rotenberg Center, feature content that may be disturbing.

  1. ↑ Ulatowski, Rachel. The Autism Speaks Controversy, Explained, The Mary Sue
  2. ↑ Silberman, Steve. Op-Ed: Autism Speaks needs to do a lot more listening, LA Times
  3. ↑ Berrington, Lucy. A Reporter's Guide to the Autism Speaks Debacle, Psychology Today
  4. ↑ 4.0 4.1 Gross, Jane and Strom, Stephanie. Autism Debate Strains a Family and Its Charity, New York Times
  5. ↑ Pittam, Nicole. Yoko Ono named first Global Autism Ambassador, Monsters & Critics
  6. ↑ 6.0 6.1 Willingham, Emily. Why Autism Speaks Doesn't Speak For Me, Forbes
  7. ↑ Stokstad, Erik. Resignations Highlight Disagreement On Vaccines in Autism Group, Science
  8. ↑ Luscombe, Richard. Charity chief quits over autism row, The Guardian
  9. ↑ Kalb, Claudia (July 1, 2009). "Another Resignation At Autism Speaks". Newsweek. Archived from the original on July 4, 2009. Retrieved December 6, 2021.
  10. ↑ Horrific Autism Speaks “I am Autism” ad transcript, Autistic Self-Advocacy Network
  11. ↑ Lien, Kayla. Lien: Autism Speaks Doesn’t Care About Autistic People, The Daily Utah Chronicle
  12. ↑ Crosman, Cassandra. A LOOK AT AUTISM SPEAKS’ “100 DAY KIT”, In the Loop About Neurodiversity
  13. ↑ McGill, Owen and Robinson, Anna. “Recalling hidden harms”: autistic experiences of childhood applied behavioural analysis (ABA), Advances in Autism
  14. ↑ Kupferstein, Henny. Evidence of increased PTSD symptoms in autistics exposed to applied behavior analysis, Advances in Autism
  15. ↑ Aileen Herlinda Sandoval-Norton, Gary Shkedy & Dalia Shkedy | Jacqueline Ann Rushby (Reviewing editor) (2019) How much compliance is too much compliance: Is long-term ABA therapy abuse?, Cogent Psychology, 6:1, DOI: 10.1080/23311908.2019.1641258
  16. ↑ Kupferstein, Henny. Why caregivers discontinue applied behavior analysis (ABA) and choose communication-based autism interventions, Advances in Autism
  17. ↑ Hinman, Katie. "UN Calls Shock Treatment at Mass. School 'Torture'". ABC News. Retrieved December 30, 2013.
  18. ↑ Bersinger, Anne (1982-01-29). California Investigation into Behavior Research Institute of California. California Department of Social Services.
  19. ↑ "Torture not Treatment: Electric Shock and Long-Term Restraint in the United States on Children and Adults with Disabilities at the Judge Rotenberg Center" (PDF). Disability Rights International. Archived from the original (PDF) on January 8, 2013. Retrieved December 31, 2013.
  20. ↑ Brown, Lydia. An Unholy Alliance: Autism Speaks and the Judge Rotenberg Center, Autistic Hoya
  21. ↑ 21.0 21.1 Podkul, Alexander (June 17, 2014). "Understanding the puzzle of Autism Speaks". Philanthropy Daily. Archived from the original on May 13, 2016. Retrieved May 9, 2016.
  22. ↑ Diament, Michelle (September 10, 2009). "Top Earner At Autism Speaks Paid More Than $600,000". Disability Scoop. Archived from the original on August 5, 2016. Retrieved May 9, 2016.
  23. ↑ Shire, Emily (June 13, 2014). "'Autism Speaks' – but Should Everyone Listen?". The Daily Beast. Archived from the original on May 2, 2016. Retrieved May 9, 2016.
  24. ↑ Diament, Michelle (November 12, 2019). "Autism Speaks Revenue Surges". Disability Scoop. Archived from the original on November 14, 2019. Retrieved November 14, 2019.
  25. ↑ Diament, Michelle (October 14, 2016). "Autism Speaks No Longer Seeking Cure". Disability Scoop. Archived from the original on November 22, 2016. Retrieved November 21, 2016.
  26. ↑ Dahl, Melissa (October 18, 2016). "A Leading Autism Organization Is No Longer Searching for a 'Cure'". The Cut. Archived from the original on January 9, 2022. Retrieved August 10, 2022.
  27. ↑ Luterman, Sara. The biggest autism advocacy group is still failing too many autistic people, Washington Post
  28. ↑ Rose, Luna. Why Autistics Don’t Trust Autism Speaks’ Rebranding, Autistic Dreams
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