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Autism Science Foundation

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Autism Science Foundation
AbbreviationASF
FoundedMarch 24, 2009; 16 years ago (2009-03-24)[1]
FoundersAlison Tepper Singer,
Karen Margulis London
26-4522309[2]
Legal status501(c)(3) non-profit organization
HeadquartersNew York City[3]
Coordinates40°44′55″N 73°59′23″W / 40.748496°N 73.9898322°W / 40.748496; -73.9898322
Scott Badesch[4]
Alison Singer[5]
Scientific Advisory Board Chair
James McPartland, PhD[6]
Revenue$1,231,922[2][7] (2016)
Expenses$1,270,604[2] (2016)
Employees6[2] (2022)
Volunteers50[2] (2016)
Websitewww.autismsciencefoundation.org

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.[8] The organization was founded in April 2009 by Alison Tepper Singer, a former senior executive of Autism Speaks and the longest-serving public member of the Interagency Autism Coordinating Committee (IACC), and Karen Margulis London, co-founder of the National Alliance for Autism Research (NAAR). Both Singer and London are parents of autistic individuals. Singer also has an autistic sibling.[9]

Formation

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ASF was created as a split from Autism Speaks, which assigned a high priority to investigating the debunked claim that vaccines make people autistic. This focus raised concerns among parents and researchers.[10]

Singer, a senior executive of Autism Speaks, resigned in January 2009 rather than vote for committing money to new research studies into vaccination and autism. The IACC, of which Singer was a member, voted against committing the research funds; this was contrary to the Autism Speaks policy on vaccine safety research. Singer said:

"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 noted that numerous scientific studies already disproved the link first suggested more than a decade ago and that Autism Speaks needs to "move on."[11] Later that year, along with NAAR cofounder Karen London, Singer launched ASF as 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 early diagnosis and intervention are critical.[12][independent source needed]

Eric London 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. London is a founding member of the ASF's Scientific Advisory Board.[13]

Activities

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On January 5, 2011, Brian Deer published the first part of his British Medical Journal series on Andrew Wakefield's "elaborate fraud" which started the dubious MMR vaccine controversy.[14] On January 7, 2011, Singer was interviewed by Kiran Chetry on CNN's American Morning.[15] Singer discussed the repercussions of Deer's report, stating, "...we can finally put the question of autism and vaccines behind us."

Since 2014, ASF has hosted annual Days of Learning, TED-style science conferences.[citation needed]

ASF offers numerous funding opportunities for scientists, and has been nationally recognized for its support of early career researchers. The organization currently offers pre- and postdoctoral fellowships, two-year post undergraduate fellowships, medical school gap year fellowships, and undergraduate summer research awards.[16][17]

ASF has been a sponsor of the "International Society for Autism Research" (INSAR) since 2009, and has interviewed numerous researchers at the event.[18]

In 2019, Singer announced that she had joined the National Council on Severe Autism.[19]

In 2020, ASF partnered with Els for Autism to form Sam's Sibs Stick Together, which aims to offer extra support for autism siblings, present findings of research that focus on siblings and discuss resources available for siblings of all ages.[citation needed]

In 2025, speaking in her capacity as president of ASF, Singer reiterated that vaccines do not make people autistic, while also stating that she gave credit to recently appointed U.S. Secretary of Health and Human Services and anti-vaccine activist Robert F. Kennedy, Jr. for "wanting to study the causes of autism."[20] In a subsequent interview, Singer labeled Kennedy a "data denier," while also stating that she believed he had empathy for families of autistic people with highly intensive support needs and genuinely wanted to help them. Singer also claimed that Kennedy agreed with her position that disproportionate focus was being placed on autistic people with less intensive support needs.[21]

Applied behavior analysis

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ASF has promoted the use of applied behavior analysis (ABA), a controversial operant-conditioning system primarily used to modify the behavior of autistic people.[22][23][24][25][26][27][28]

The use of ABA on autistic children was popularized by UCLA psychology professor Ole Ivar Lovaas, who used electric shocks and other physical punishments on some of his test subjects (including both autistic and queer children) and once stated that he believed autistic people were human in physical form only and needed to be psychologically constructed. Lovaas' goal was to make autistic children indistinguishable from their peers academically and socially, and he claimed that intensive, longterm ABA administered at a young age resulted in the "recovery" of some of his autistic test subjects.[25][26][27][29][30][31][32][33][34]

ABA is widely opposed within the autistic rights movement. Its critics (including many people who have undergone ABA themselves) have argued it is abusive, traumatizing, dehumanizing, pseudoscientific and not genuinely collaborative or supportive. They have also argued that changes in the way it's practiced (such as punishments and food reinforcers being less commonly used) have not made ABA positive or benign.[25][26][27][28][30][31]

ASF has rejected criticism of ABA as outdated or misinformed and dismissed those who oppose its use or view it negatively as a statistically irrelevant minority.[22] Singer has claimed ABA benefited her autistic daughter and suggested that the historical approach of recommending it to all autistic children (including those without communication delays or co-occurring intellectual disabilities) may have been harmful and resulted in a negative perception of ABA amongst those harmed.[25]

Funding

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Vaccinologist Dr. Paul Offit, a founding board member of ASF, donates all royalties from his book Deadly Choices to the organization.[35] ASF also receives royalties from paperback sales of Offit's previous book, Autism's False Prophets.[36]

ASF is also the recipient of funds raised through Wall Street Rides FAR, the annual cycling and walking event that originated in White Plains and has since expanded to include satellite rides in Baltimore and Toronto.[citation needed]

Awards

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GuideStar named ASF a top nonprofit startup in disabilities category in 2011, calling it "a shining star to those interested in real science and evidence based interventions".[37]

In 2021, ASF earned top-rated status from GreatNonProfits for the ninth consecutive year.[citation needed]

Scientific advisory board

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ASF has 17 scientific advisory board members, including Ami Klin and Harold S. Koplewicz.[38]

See also

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References

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  1. ^ "AUTISM SCIENCE Foundation[permanent dead link]". Department of Consumer and Regulatory Affairs. Government of the District of Columbia. Accessed on February 25, 2016.
  2. ^ a b c d e "Form 990: Return of Organization Exempt from Income Tax". Autism Science Foundation. Guidestar. December 31, 2016.
  3. ^ "Form 990: Return of Organization Exempt from Income Tax". Autism Science Foundation. Guidestar. December 31, 2013.
  4. ^ "Board of Directors Archived 2021-08-20 at the Wayback Machine". Autism Science Foundation. Retrieved March 8, 2018.
  5. ^ "Staff Archived 2021-08-20 at the Wayback Machine". Autism Science Foundation. Retrieved March 8, 2018.
  6. ^ "Scientific Advisory Board Archived 2021-08-28 at the Wayback Machine". Autism Science Foundation. Retrieved March 8, 2018.
  7. ^ "Autism Science Foundation" (PDF). Foundation Center. 25 October 2016. Retrieved 22 June 2017.
  8. ^ "Autism Science Foundation - About Us". 17 February 2022. Archived from the original on 2022-02-19.
  9. ^ Diament, Michelle (2025-04-21). "Kennedy's Comments About ASD Draw Backlash". Disability Scoop. Retrieved 2025-04-23.
  10. ^ Stokstad E (2009). "Resignations highlight disagreement on vaccines in autism group". Science. 325 (5937): 135. doi:10.1126/science.325_135a. PMID 19589974.
  11. ^ Luscombe R (2009-01-25). "Charity chief quits over autism row". Observer. London. Archived from the original on 29 January 2009. Retrieved 2009-02-01.
  12. ^ "Autism Science Foundation launches operations: new advocacy group will focus on non-vaccine-related autism research" (Press release). Autism Science Foundation. 2009-04-18. Archived from the original on 2010-05-09. Retrieved 2009-04-20.
  13. ^ Kalb C (July 1, 2009). "Another resignation at Autism Speaks". The Human Condition. Newsweek. Archived from the original on July 4, 2009. Retrieved July 3, 2009.
  14. ^ Deer, B. (2011). "How the case against the MMR vaccine was fixed". BMJ. 342: c5347. doi:10.1136/bmj.c5347. PMID 21209059. S2CID 46683674. Archived from the original on 12 January 2011. Retrieved 2011-01-12.
  15. ^ "The mystery of autism". CNN. Archived from the original on January 10, 2011. Retrieved January 12, 2011.
  16. ^ "Current Grantees - Autism Science Foundation website". Archived from the original on 2012-01-04.
  17. ^ "Past Grantees". Autism Science Foundation. Archived from the original on 2011-12-14.
  18. ^ "Autism Science Foundation's interviews with IMFAR researchers: David Mandell - Wellsphere". Archived from the original on 2011-10-05. Retrieved 2010-12-29.
  19. ^ Lutz, Amy S.F. "National Council on Severe Autism (NCSA) Launches". Psychology Today. Retrieved 18 January 2019.
  20. ^ Diament, Michelle (2025-02-18). "Trump Establishes Commission Targeting Autism, Other Conditions". Disability Scoop. Retrieved 2025-04-23.
  21. ^ Scott, Dylan (2025-05-30). "RFK Jr. is looking in the wrong place for autism's cause". Vox. Retrieved 2025-06-09.
  22. ^ a b "Applied Behavior Analysis - Autism Science Foundation". Autism Science Foundation - Supporting and sharing autism research to improve the real lives of real people. 2022-01-03. Retrieved 2025-06-09.
  23. ^ ASF (2020-02-10). "The Facts Behind Behavioral Analysis - Autism Science Foundation". Autism Science Foundation - Supporting and sharing autism research to improve the real lives of real people. Retrieved 2025-06-09.
  24. ^ "Treatment Options - Autism Science Foundation". Autism Science Foundation - Supporting and sharing autism research to improve the real lives of real people. 2021-10-19. Retrieved 2025-06-09.
  25. ^ a b c d Winter, Jessica (2024-02-12). "The Argument Over a Long-Standing Autism Intervention". The New Yorker. ISSN 0028-792X. Retrieved 2025-06-09.
  26. ^ a b c Hawkins, Beth (2024-03-06). "America's Most Popular Autism Therapy May Not Work — and May Seriously Harm Patients' Mental Health". Retrieved 2025-06-09.
  27. ^ a b c Williams, Anna (2018-07-05). "Autonomously Autistic: Exposing the Locus of Autistic Pathology". Canadian Journal of Disability Studies. 7 (2): 60–82. doi:10.15353/cjds.v7i2.423. ISSN 1929-9192.
  28. ^ a b "The controversy over autism's most common therapy". The Transmitter: Neuroscience News and Perspectives. 2016-08-10. Retrieved 2025-06-09.
  29. ^ Gibson, Margaret F.; Douglas, Patty (2018-10-16). "Disturbing Behaviours: Ole Ivar Lovaas and the Queer History of Autism Science". Catalyst: Feminism, Theory, Technoscience. 4 (2): 1–28. doi:10.28968/cftt.v4i2.29579. ISSN 2380-3312.
  30. ^ a b "The Man Who Believed He Could Have Raised Hitler to Be a Nice Person". Los Angeles Review of Books. 2025-04-10. Retrieved 2025-06-09.
  31. ^ a b Wallach, Jennifer Jensen (2024-03-01). "Food, the Production of Normalcy, and the Archive of Autism". Disability Studies Quarterly. 43 (2). doi:10.18061/dsq.v43i2.9144. ISSN 2159-8371.
  32. ^ "Families cling to hope of autism 'recovery'". Los Angeles Times. 2013-01-09. Retrieved 2025-06-09.
  33. ^ Lovaas, O. Ivar (1987). "Behavioral treatment and normal educational and intellectual functioning in young autistic children". Journal of Consulting and Clinical Psychology. 55 (1): 3–9. doi:10.1037/0022-006x.55.1.3. ISSN 1939-2117. Archived from the original on 2025-05-24.
  34. ^ Goleman, Daniel (1987-03-10). "RESEARCHER REPORTS PROGRESS AGAINST AUTISM". The New York Times. ISSN 0362-4331. Retrieved 2025-06-09.
  35. ^ "Behind the Vaccine Science: An Interview with Dr. Paul Offit, Author of Deadly Choices, How the Anti-Vaccine Movement Threatens Us All". Archived from the original on 2011-01-07. Retrieved 2011-01-12.
  36. ^ "Dr. Paul Offit's book, Autism's False Prophets". Archived from the original on 2012-04-03.
  37. ^ "GuideStar names ASF a top nonprofit startupl".
  38. ^ "Scientific Advisory Board". Archived from the original on 2012-02-20.
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