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Alison Singer
NationalityAmerican
Other namesAlison Lee Tepper
Alison Tepper Singer
Alma materYale University
Harvard University (MBA)
OccupationPresident of a non-profit organization
Known forAutism Science Foundation
Autism Speaks
Websitewww.autismsciencefoundation.org
Neurodiversity paradigm
Philosophy
Organizations
Events
Issues
People
Films
Criticism

Alison Singer (née Tepper)[1] 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 Autism Coordinating Committee (IACC).[2] Singer was hired as vice president of programming for the cable division of NBC in 1993 and held multiple leadership roles at controversial[3][4] non-profit organization Autism Speaks between 2005 and 2009.[5][6]

Throughout her non-profit career, Singer has been generally supportive of the medical model of disability (particularly in the context of autism) and generally critical of the autistic rights and neurodiversity movements.

Family and education

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Singer is the daughter of Rita and Gerald Tepper.[1] She has an older autistic brother, Steven, who was institutionalized at Willowbrook State School as a child before being moved to Letchworth Village, and one younger brother. According to Singer, her mother encouraged her to only publicly acknowledge the existence of her younger brother.[5] She has since become Steven's legal guardian.[7]

Singer and husband Daniel married in 1994 at ages 27 and 29, respectively.[1][5]

Singer has two daughters: Jodie (the oldest, born in 1997, who is autistic) and Lauren.[5] According to Singer, when Lauren was due to receive the MMR vaccine in 1999, she chose to instead follow anti-vaccine activist Andrew Wakefield's advice and separately administer vaccines for each disease it protected against. Singer claimed she did so in the hope it would reduce Lauren's likelihood of being autistic like Jodie, but subsequently recognized that her decision only placed Lauren's health at risk.[8]

Singer graduated Yale University magna cum laude and earned a Master of Business Administration at Harvard University.[1] She received an honorary degree from Emory University in May 2020.[7]

Research and advocacy

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In 2005, Autism Speaks co-founders Bob and Suzanne Wright hired Singer as the organization's first employee and named her its interim chief executive. Singer was serving as senior vice president of communications and strategy when she resigned from the organization in 2009. Singer founded ASF later that year.[5][6]

Singer resigned from Autism Speaks because she did not believe it should spend any additional money on studying the scientifically discredited link between the MMR vaccine and autism or influence others to do so.[5][9][10] At Autism Speaks, she was in a far more influential position and helped that organization become well known.[11][6] During Singer's entire tenure at Autism Speaks, one of the organization's primary goals was to cure autistic people.[12][13][14]

In 2010, Singer developed the C.A.S.E. approach as a means for clinicians to address vaccine hesitancy immediately and during the clinical encounter in which the hesitancy is raised.[15] C.A.S.E. stands for Corroborate, About Me, Science, and Explain/Advise. With the C.A.S.E. approach, the clinician frames a response to the vaccine hesitant patient that corroborates awareness of the patient's hesitancy while identifying a shared underlying value or concern. Next, the clinician makes an about me statement, describing how the clinician went about getting a scientific answer to the concern. The clinician then summarizes the science underlying the recommendation and/or explanation addressing said concerns. Finally, the clinician explains the clinician's advice to the patient. The C.A.S.E. approach then might only consist of four sentences altogether, but it connects the patient to the clinician through the shared value or concern (corroborate), recognizes and employs the professional standing of the clinician (about me), relies on science to address the concern (science), and allows the clinician to reframe the recommendation addressing the concern of the patient (explain/advise).[16][17][18]

In 2013, Singer appeared in a Harvard Business School (HBS) alumnus profile, in which she claimed to be building a "pipeline of scientists" whom she expected to determine the cause(s) of autism within 10-15 years. She also said she learned the skills needed to run ASF during her time at HBS.[19]

In 2024, speaking in her capacity as president of ASF, Singer defended the use of applied behavior analysis (a controversial operant-conditioning system widely opposed within the autistic rights movement[20][21][22]) on autistic people with highly intensive support needs, including her own daughter. Singer claimed that critics were mostly autistic people with no communication delays or co-occurring intellectual disabilities who were wrongly recommended it as children.[20] ASF, itself, has dismissed criticism of applied behavior analysis as outdated or misinformed and critics as part of a statistically irrelevant minority.[23]

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."[24] 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 added that Kennedy agreed with her position that disproportionate focus was being placed on autistic people with less intensive support needs.[25] Also in 2025, Singer pushed back on criticism of Kennedy's claim that autism was preventable, stating that ASF leadership "believe[d] strongly" that scientific research related to autism should be focused on prevention.[26] The idea that the scientific community should work to prevent autism (or disability more generally) is a controversial one and has been labeled eugenic by some observers and critics.[27][28][29][30][31]

Singer serves on the executive boards of the Marcus Autism Center at Emory, the Yale Child Study Center, the Seaver Autism Center at the Icahn School of Medicine and the Autism Research Center at the University of North Carolina at Chapel Hill.[32]

Other views

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In 2009, Singer claimed she supported some of the goals of Autistic activists she had previously spoken with, but disagreed with any opposition to genetic research.[33]

In 2013, Singer criticized unnamed members of the neurodiversity movement for opposition to medical research that she believed would benefit her autistic daughter. She also claimed they had influenced the strategic plan of the IACC so that it suggested allocating some funds to study issues most relevant to autistic people with less intensive support needs (such as employment), money she believed would be better spent studying issues most relevant to autistic people with highly intensive support needs (such as how to best treat self-injurious behavior).[34]

In 2017, Singer stated that she believed autistic people with less intensive support needs were overrepresented in media to the detriment of the "most vulnerable." She also lamented that all autistic diagnoses were rolled into autism spectrum disorder in 2013 with the release of the fifth edition of the Diagnostic and Statistical Manual of Mental Disorders, claiming that this harmed the ability of medical professionals to provide personalized care and advocating for the adoption of new subtype labels.[35] Singer echoed these sentiments in 2021 and subsequent years, when she advocated for the adoption of "profound autism" as a new label to describe autistic people with highly intensive support needs. In 2021, Singer also served on a commission organized by The Lancet, which recommended the label's formal adoption by the medical community.[36][37][38][39] However, the proposed adoption has been met with resistance by some Autistic activists, caregivers, researchers and medical professionals, who believe it would not be medically useful and would instead be reductive, stigmatizing, segregating or otherwise harmful.[40][41][42][43][44][45][46][47][48]

In 2019, Singer joined the nascent National Council on Severe Autism (NCSA) as its treasurer.[49] Similar to Singer's push for "profound autism," the NCSA has suggested the medical community adopt "severe autism" as a label to describe autistic people with highly intensive support needs. The organization also embraces the medical model of disability in the context of autism, rejects the validity of the autistic rights and neurodiversity movements and claims autistic people with less intensive support needs are overrepresented in media and policymaking. The NCSA also dismisses expanded diagnostic criteria and access as the sole reason for the longterm rise in autism prevalence its leadership has labeled "epidemic."[50][51][52][53][54][55]

Autism Every Day controversy

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Further information: Autism Every Day

In 2006, Autism Speaks sponsored and distributed the short film Autism Every Day, produced by Lauren Thierry and Eric Solomon.[56] Singer was criticized for a scene in which she recalled contemplating murder-suicide by driving her and her autistic daughter off the George Washington Bridge following a visit to a specialized school she deemed terrible. She was additionally criticized for recounting this in the presence of her autistic daughter.[57] Thierry said that these feelings were not unusual among non-autistic mothers of autistic children.[58] According to the book Battleground: The Media, Thierry instructed the families she interviewed not to do their hair, vacuum or have therapists present and appeared with her film crew without preliminary preparations, in order to authentically capture the difficulties of life with autistic children, such as autistic children having meltdowns or physically struggling with parents.[57][58]

In 2009, Singer responded by claiming that she made this comment because the New York State Department of Health recommended that her autistic daughter be placed in a school with very poor conditions and did not want her daughter to suffer there. However, she regretted phrasing her concerns in that manner.[33]

References

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  1. ^ a b c d "WEDDINGS; Alison L. Tepper, Daniel M. Singer". The New York Times. 1994-07-03. ISSN 0362-4331. Retrieved 2025-05-28.
  2. ^ Wallenstein, Joanne. "School Board Candidate Alison Singer Brings a Wealth of Experience to the Table". Scarsdale. Retrieved 7 March 2020.
  3. ^ Ulatowski, Rachel (2024-12-09). "The Autism Speaks Controversy, Explained". The Mary Sue. Retrieved 2025-05-28.
  4. ^ "Autism Speaks is leaving Canada. Is that a good thing? | CBC News". CBC. Archived from the original on 2025-04-01. Retrieved 2025-05-29.
  5. ^ a b c d e f Wadman, Meredith (November 2011). "Autism's fight for facts: A voice for science". Nature. 479 (7371): 28–31. Bibcode:2011Natur.479...28W. doi:10.1038/479028a. PMID 22051658.
  6. ^ a b c Luscombe, Richard (25 January 2009). "Charity chief quits over autism row". The Observer. Retrieved 7 March 2020.
  7. ^ a b "Emory University Class of 2020". news.emory.edu. Retrieved 2025-05-28.
  8. ^ "Time to regroup on autism - CNN.com". www.cnn.com. Retrieved 2025-06-23.
  9. ^ Blum, Debra E. (20 August 2009). "New Autism Charity Hopes to Carve Out Its Niche, Despite Tough Times". The Chronicle of Philanthropy. Retrieved 13 March 2020.
  10. ^ Donvan, John; Zucker, Caren (2016). In a Different Key: The Story of Autism. Crown. pp. 486–491. ISBN 978-0-307-98568-2. Retrieved 13 March 2020.
  11. ^ Plait, Phil. "Alison Singer: autism hero". Discover Magazine. Retrieved 7 March 2020.[dead link]
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  13. ^ "The Country's Biggest Autism Research Group Has A Whole New Mission". HuffPost. 2016-10-18. Retrieved 2025-05-29.
  14. ^ "Why the focus of autism research is shifting away from searching for a 'cure'". NBC News. 2019-09-22. Retrieved 2025-05-29.
  15. ^ Singer, Alison. 2010. Making the CASE for Vaccines: Communicating about Vaccine Safety. Virtual Immunization Communication Network (VICNetwork). URL: http://www.vicnetwork.org/2010/09/22/making-the-case-for-vaccine/. Last accessed January 31, 2021.[dead link]
  16. ^ Jacobson RM, Van Etta L, Bahta L. The C.A.S.E. Approach: Guidance for Talking to Vaccine-Hesitant Parents. Minn Med. Apr 2013;96(4):49-50.
  17. ^ Jacobson RM. Making the C.A.S.E. for the Human Papillomavirus Vaccine: How to Talk to Parents and Adolescents. Minn Med. Feb 2014;97(2):38-42.
  18. ^ Jacobson RM, Finney Rutten LR. Parents' Hesitance about HPV: Using the CASE Approach to Address their Concerns. Minn Med. Feb 2019;102(1):24-27.
  19. ^ Radsken, Jill. "Making Lives Better". HBS Alumni. Retrieved 7 March 2020.
  20. ^ a b Winter, Jessica (2024-02-12). "The Argument Over a Long-Standing Autism Intervention". The New Yorker. ISSN 0028-792X. Retrieved 2025-06-10.
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  24. ^ Diament, Michelle (2025-02-18). "Trump Establishes Commission Targeting Autism, Other Conditions". Disability Scoop. Retrieved 2025-04-23.
  25. ^ Scott, Dylan (2025-05-30). "RFK Jr. is looking in the wrong place for autism's cause". Vox. Retrieved 2025-06-09.
  26. ^ "RFK Jr.'s politically explosive search for autism's 'root cause'". POLITICO. 2025-05-01. Retrieved 2025-06-23.
  27. ^ Gatlin, Nick (2025-05-09). "RFK Jr.'s War on Autistic People is Eugenics With a New Face". Vanguard. Retrieved 2025-06-23.
  28. ^ "Autism research at the crossroads". The Transmitter: Neuroscience News and Perspectives. 2023-01-25. Retrieved 2025-06-23.
  29. ^ Schneider, Cornelia; Walls, Martha E. (2025-05-27). "Uninformed comments on autism are resonant of dangerous ideas about eugenics". The Conversation. Retrieved 2025-06-23.
  30. ^ 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.
  31. ^ Baron-Cohen, Simon (2009-05-09). "Does autism need a cure?". The Lancet. 373 (9675): 1595–1596. doi:10.1016/S0140-6736(09)60891-6. ISSN 0140-6736.
  32. ^ "Who We Are - National Council on Severe Autism - Team — NCSA".
  33. ^ a b Singer, Alison (9 September 2009). "Speaking Out About 'Autism Every Day'". ASF Blog. Retrieved 29 February 2020.
  34. ^ Lutz, Amy S. F. (2013-01-16). "Is the Neurodiversity Movement Misrepresenting Autism?". Slate. ISSN 1091-2339. Retrieved 2025-05-25.
  35. ^ "Portrayals of autism on television don't showcase full spectrum". The Transmitter: Neuroscience News and Perspectives. 2017-11-07. Retrieved 2025-05-26.
  36. ^ Minot, David (2021-01-06). ""Profound Autism" Is the Term We Need to Provide Critical Specificity to a Broad Spectrum". Autism Spectrum News. Retrieved 2025-05-26.
  37. ^ Singer, Alison (2021-12-07). "Labels can harm, but they also can help: See 'profound autism'". STAT. Retrieved 2025-05-26.
  38. ^ Minot, David (2022-11-29). "Opinion: It's Time to Embrace "Profound Autism"". Autism Spectrum News. Retrieved 2025-05-26.
  39. ^ Lord, Catherine; Charman, Tony; Havdahl, Alexandra; Carbone, Paul; Anagnostou, Evdokia; Boyd, Brian; Carr, Themba; Vries, Petrus J. de; Dissanayake, Cheryl; Divan, Gauri; Freitag, Christine M.; Gotelli, Marina M.; Kasari, Connie; Knapp, Martin; Mundy, Peter (2022-01-15). "The Lancet Commission on the future of care and clinical research in autism". The Lancet. 399 (10321): 271–334. doi:10.1016/S0140-6736(21)01541-5. hdl:10852/106722. ISSN 0140-6736. PMID 34883054.
  40. ^ Minot, David (2022-11-29). "Let's NOT Divide the Autism Spectrum: My View From the Trenches on "Profound Autism"". Autism Spectrum News. Retrieved 2025-05-26.
  41. ^ Kripke-Ludwig, Rachel (2023). ""Profound Autism" Label Does Not Predict Strengths or Help Plan Supports". Public Health Reports (Washington, D.C.: 1974). 138 (6): 849–850. doi:10.1177/00333549231199480. ISSN 1468-2877. PMC 10576471. PMID 37732335.
  42. ^ Ellison, Katherine (2023-11-18). "A rift over 'profound autism' reveals a community's deeper divide". The Washington Post. ISSN 0190-8286. Retrieved 2025-05-26.
  43. ^ "Functioning Labels Harm Autistic People - Autistic Self Advocacy Network". https://autisticadvocacy.org/. 2021-12-09. Retrieved 2025-05-26. {{cite web}}: External link in |website= (help)
  44. ^ Kapp, Steven K. (2023-01-19). "Profound Concerns about "Profound Autism": Dangers of Severity Scales and Functioning Labels for Support Needs". Education Sciences. 13 (2): 106. doi:10.3390/educsci13020106. ISSN 2227-7102.
  45. ^ Rosa, Shannon Des Roches (2025-04-19). "A "Profound Autism" Category Is Segregation—Not Progress". THINKING PERSON'S GUIDE TO AUTISM. Retrieved 2025-05-26.
  46. ^ Bascom, Julia; Perry, David M. (2022-01-31). "Dividing Up the Autism Spectrum Will Not End the Way You Think". ISSN 0027-8378. Retrieved 2025-05-26.
  47. ^ Minot, David (2023-08-21). "Don't Divide the Autism Spectrum: Unite the Whole Community". Autism Spectrum News. Retrieved 2025-05-26.
  48. ^ Staff (2021-12-17). "Push To Add 'Profound Autism' Label Gains Steam". Disability Scoop. Retrieved 2025-05-26.
  49. ^ "New Advocacy Group Seeks Realistic Solutions for Severely Disabled Autistics — NCSA". National Council on Severe Autism. 2019-01-10. Retrieved 2025-05-29.
  50. ^ "Why the neurodiversity movement has become harmful | Aeon Essays". Aeon. Retrieved 2025-05-29.
  51. ^ "There's a war between parents of kids with autism and autistic adults". TODAY.com. 2021-08-16. Retrieved 2025-05-29.
  52. ^ "New group faces backlash over its goals for severe autism". The Transmitter: Neuroscience News and Perspectives. 2019-02-04. Retrieved 2025-05-29.
  53. ^ "A severe autism advocate responds to RFK Jr.'s research initiative : Consider This from NPR". NPR. 2025-04-28. Retrieved 2025-05-29.
  54. ^ "FAQs — NCSA". National Council on Severe Autism. Retrieved 2025-05-29.
  55. ^ "DSM Diagnostic Labels — NCSA — NCSA". National Council on Severe Autism. Retrieved 2025-05-29.
  56. ^ Moore AS (21 January 2007). "Hard-hitting look at autism is being shown at Sundance". New York Times. Retrieved 16 November 2008.
  57. ^ a b Andersen, Robin (2008). Battleground: The Media. Vol. 1. Westport, Connecticut: Greenwood Press. pp. 127–128. ISBN 978-0-313-34168-7. LCCN 2007032454. OCLC 230095012.
  58. ^ a b Liss J (2006-07-11). "Autism: the art of compassionate living". WireTap. Archived from the original on 2008-05-23. Retrieved 2008-03-21.
[edit]
Scholia has a profile for Alison Singer (Q87311024).
Retrieved from "https://en.wikipedia.org/w/index.php?title=Alison_Singer&oldid=1297049832"