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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]

Brain donation

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In 2012, speaking in her capacity as president of ASF, Singer encouraged parents to designate their autistic children brain donors through Autism Speaks' Autism Tissue Program. Singer claimed she had designated her own autistic daughter a donor in the hope the post-mortem study of her brain would lead to the development of medical treatments that would "enhance the lives" of other autistic people.[35] The same year, the Simons Foundation Autism Research Initiative (SFARI) awarded Singer and ASF a grant to promote SFARI's Autism BrainNet brain donation registry. Singer and ASF launched a promotional campaign paid for by the grant in May 2014, which SFARI credited with a substantial uptick in donor registrations for the remainder of the calendar year.[36][37]

Prevention of autism

[edit]

On April 17, 2025, the Autistic Self Advocacy Network and five other organizations cosigned an open letter criticizing the Trump administration's policies they highlighted as negatively impacting the autistic community, including the promotion of the false claim that there was a causal link between vaccines and autism.[38][39] The letter also stated the claim that autism was preventable ran counter to scientific consensus and perpetuated stigma, which Singer later claimed made ASF leadership unwilling to cosign it. Singer explained, "[T]here was a focus in that letter that we shouldn't be focusing science on prevention, and we believe strongly that we should."[40] The idea that society should work to prevent autism (or disability more generally) is controversial and has been labeled eugenic by some observers and critics.[41][42][43][44][45][46][47][48][49][50][51]

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.[52] ASF also receives royalties from paperback sales of Offit's previous book, Autism's False Prophets.[53]

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".[54]

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

Scientific advisory board

[edit]

ASF has 17 scientific advisory board members, including Ami Klin and Harold S. Koplewicz.[55]

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. October 25, 2016. Retrieved June 22, 2017.
  8. ^ "Autism Science Foundation - About Us". February 17, 2022. Archived from the original on February 19, 2022.
  9. ^ Diament, Michelle (April 21, 2025). "Kennedy's Comments About ASD Draw Backlash". Disability Scoop. Retrieved April 23, 2025.
  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 (January 25, 2009). "Charity chief quits over autism row". Observer. London. Archived from the original on January 29, 2009. Retrieved February 1, 2009.
  12. ^ "Autism Science Foundation launches operations: new advocacy group will focus on non-vaccine-related autism research" (Press release). Autism Science Foundation. April 18, 2009. Archived from the original on May 9, 2010. Retrieved April 20, 2009.
  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 January 12, 2011. Retrieved January 12, 2011.
  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 January 4, 2012.
  17. ^ "Past Grantees". Autism Science Foundation. Archived from the original on December 14, 2011.
  18. ^ "Autism Science Foundation's interviews with IMFAR researchers: David Mandell - Wellsphere". Archived from the original on October 5, 2011. Retrieved December 29, 2010.
  19. ^ Lutz, Amy S.F. "National Council on Severe Autism (NCSA) Launches". Psychology Today. Retrieved January 18, 2019.
  20. ^ Diament, Michelle (February 18, 2025). "Trump Establishes Commission Targeting Autism, Other Conditions". Disability Scoop. Retrieved April 23, 2025.
  21. ^ Scott, Dylan (May 30, 2025). "RFK Jr. is looking in the wrong place for autism's cause". Vox. Retrieved June 9, 2025.
  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. January 3, 2022. Retrieved June 9, 2025.
  23. ^ ASF (February 10, 2020). "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 June 9, 2025.
  24. ^ "Treatment Options - Autism Science Foundation". Autism Science Foundation - Supporting and sharing autism research to improve the real lives of real people. October 19, 2021. Retrieved June 9, 2025.
  25. ^ a b c d Winter, Jessica (February 12, 2024). "The Argument Over a Long-Standing Autism Intervention". The New Yorker. ISSN 0028-792X. Retrieved June 9, 2025.
  26. ^ a b c Hawkins, Beth (March 6, 2024). "America's Most Popular Autism Therapy May Not Work — and May Seriously Harm Patients' Mental Health". Retrieved June 9, 2025.
  27. ^ a b c Williams, Anna (July 5, 2018). "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. August 10, 2016. Retrieved June 9, 2025.
  29. ^ Gibson, Margaret F.; Douglas, Patty (October 16, 2018). "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. April 10, 2025. Retrieved June 9, 2025.
  31. ^ a b Wallach, Jennifer Jensen (March 1, 2024). "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. January 9, 2013. Retrieved June 9, 2025.
  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 May 24, 2025.
  34. ^ Goleman, Daniel (March 10, 1987). "RESEARCHER REPORTS PROGRESS AGAINST AUTISM". The New York Times. ISSN 0362-4331. Retrieved June 9, 2025.
  35. ^ "The case for brain donation". The Transmitter: Neuroscience News and Perspectives. June 26, 2012. Retrieved June 18, 2025.
  36. ^ "SFARI | Building awareness of the value of brain tissue donation for autism research". SFARI. October 1, 2012. Retrieved June 18, 2025.
  37. ^ "It Takes Brains: Simons Foundation, Autism Speaks and Autism Science Foundation launch Autism BrainNet registration site". Simons Foundation. May 27, 2014. Retrieved June 18, 2025.
  38. ^ "Leading Autism Organizations Release Joint Statement on Upholding Scientific Integrity and Supporting the Autism Community - Autistic Self Advocacy Network". autisticadvocacy.org. April 17, 2025. Retrieved June 21, 2025.
  39. ^ Diament, Michelle (April 21, 2025). "Kennedy's Comments About ASD Draw Backlash". Disability Scoop. Retrieved June 21, 2025.
  40. ^ "RFK Jr.'s politically explosive search for autism's 'root cause'". POLITICO. May 1, 2025. Retrieved June 21, 2025.
  41. ^ Gatlin, Nick (May 9, 2025). "RFK Jr.'s War on Autistic People is Eugenics With a New Face". Vanguard. Retrieved June 21, 2025.
  42. ^ Baron-Cohen, Simon (May 9, 2009). "Does autism need a cure?". The Lancet. 373 (9675): 1595–1596. doi:10.1016/S0140-6736(09)60891-6. ISSN 0140-6736.
  43. ^ Miller, Paul Steven; Levine, Rebecca Leah (February 1, 2013). "Avoiding genetic genocide: understanding good intentions and eugenics in the complex dialogue between the medical and disability communities". Genetics in Medicine. 15 (2): 95–102. doi:10.1038/gim.2012.102. ISSN 1098-3600. PMC 3566260.
  44. ^ Baron-Cohen, Simon. "Genetic studies intend to help people with autism, not wipe them out". New Scientist. Retrieved June 21, 2025.
  45. ^ Da Silva, Sarah-Marie; Hubbard, Katharine (September 2024). "Confronting the Legacy of Eugenics and Ableism: Towards Anti-Ableist Bioscience Education". CBE life sciences education. 23 (3): es7. doi:10.1187/cbe.23-10-0195. ISSN 1931-7913. PMC 11440745. PMID 39074120.
  46. ^ "The genetic mystery of why some people develop autism". www.bbc.com. April 16, 2025. Retrieved June 21, 2025.
  47. ^ "ASAN Gravely Concerned by Administration's Plans for Autistic People's Medical Data - Autistic Self Advocacy Network". autisticadvocacy.org. April 23, 2025. Retrieved June 21, 2025.
  48. ^ "How geneticists can gain greater buy-in from the autistic community". The Transmitter: Neuroscience News and Perspectives. September 9, 2022. Retrieved June 21, 2025.
  49. ^ Schneider, Cornelia; Walls, Martha E. (May 27, 2025). "Uninformed comments on autism are resonant of dangerous ideas about eugenics". The Conversation. Retrieved June 21, 2025.
  50. ^ Garland-Thomson, Rosemarie (September 1, 2012). "The Case for Conserving Disability". Journal of Bioethical Inquiry. 9 (3): 339–355. doi:10.1007/s11673-012-9380-0. ISSN 1872-4353.
  51. ^ "Autism research at the crossroads". The Transmitter: Neuroscience News and Perspectives. January 25, 2023. Retrieved June 21, 2025.
  52. ^ "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 January 7, 2011. Retrieved January 12, 2011.
  53. ^ "Dr. Paul Offit's book, Autism's False Prophets". Archived from the original on April 3, 2012.
  54. ^ "GuideStar names ASF a top nonprofit startupl".
  55. ^ "Scientific Advisory Board". Archived from the original on February 20, 2012.
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