Alison Singer

Alison Singer is the president of the Autism Science Foundation (ASF). She has also served on the IACC.[2] She was formerly an executive vice president of Autism Speaks and as a vice president at NBC.

Alison Singer
Born1966 (age 56–57)
Nanuet, New York[1]
NationalityAmerican
Alma materHarvard University (MBA)
OccupationExecutive Director
Known forAutism Science Foundation
Websitewww.autismsciencefoundation.org
Neurodiversity paradigm
Philosophy
Organizations
Events
Issues
People
Films
Criticism

Research and advocacy

Singer started the Autism Science Foundation after resigning from Autism Speaks in 2009, due to her view that it should not spend money on studying the scientifically discredited link between MMR vaccine and autism.[3][4] She discourages their portrayal of a false balance on this issue. Singer has been described as a strong candidate for combating the perception of a link between autism and vaccines. At Autism Speaks, she was in a far more influential position, and helped the organization become well-known.[5][6]

She 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.[7] 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 CASE 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).[8][9][10]

She was profiled by the Harvard Business School in an alumni profile, commending her on building a "pipeline of scientists" to research autism. She claims that HBS gave her the skills needed to run the ASF nonprofit.[11]

Singer was inspired to fund autism research based on the negative experiences of her brother with autism who was institutionalized, and taking care of a severely autistic daughter. Her daughter works with Applied Behavior Analysis therapists, and needs constant care.[12]

Singer also serves on the board of the Marcus Autism Center at Emory, the Yale Child Study Center, the executive board of the Seaver Autism Center at the Icahn School of Medicine, the executive board of the Autism Research Center at the University of North Carolina at Chapel Hill, and is a member of the National Council on "Severe" Autism.[13] She will receive an honorary degree from Emory University in May 2020.[14]

Views on autism and neurodiversity

Singer claims that she supports some of the goals of autism advocates, but still advocates for medical research on autism.[15] She says that neurodiversity often takes away funds from severely autistic individuals.[16] Singer has also advocated for more media awareness of severe autism.[17]

Autism Every Day controversy
Further information: Autism Every Day

Autism Speaks sponsored and distributes the short film Autism Every Day, produced by Lauren Thierry and Eric Solomon.[18] Alison Singer, who was in the film, was reportedly criticized for a scene in which she said that when faced with having to place the girl in a school that she deemed to be terrible, she contemplated driving her car off a bridge with her child in the car. She additionally expressed this view in the presence of her autistic daughter.[19] Thierry said that these feelings were not unusual among non-autistic mothers of autistic children.[20] 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 at homes crew without preliminary preparations, in order to authentically capture the difficulties of life with autistic children, such as autistic children throwing tantrums or physically struggling with parents.[19][20]

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. Singer also claimed that she reconciled with autism advocates to some extent, but still advocates for medical research on autism.[15]

References
  1. "WEDDINGS; Alison L. Tepper, Daniel M. Singer". The New York Times. 3 July 1994. Retrieved 7 March 2020.
  2. Wallenstein, Joanne. "School Board Candidate Alison Singer Brings a Wealth of Experience to the Table". Scarsdale. Retrieved 7 March 2020.
  3. 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.
  4. 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.
  5. Plait, Phil. "Alison Singer: autism hero". Discover Magazine. Retrieved 7 March 2020.
  6. Luscombe, Richard (25 January 2009). "Charity chief quits over autism row". The Observer. Retrieved 7 March 2020.
  7. 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.
  8. 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.
  9. 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.
  10. 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.
  11. Radsken, Jill. "Making Lives Better". HBS Alumni. Retrieved 7 March 2020.
  12. 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.
  13. https://www.ncsautism.org/team
  14. Foundation, Autism Science (26 February 2020). "Autism Science Foundation Co-Founder and President Alison Singer to Receive Honorary Degree from Emory University". GlobeNewswire News Room. Retrieved 7 March 2020.
  15. Singer, Alison (9 September 2009). "Speaking Out About 'Autism Every Day'". ASF Blog. Retrieved 29 February 2020.
  16. Lutz, Amy S. F. (16 January 2013). "Controversy and Curious Case Histories in the Autism Community". Slate Magazine. Retrieved 8 March 2020.
  17. Singer, Alison (7 November 2017). "Portrayals of autism on television don't showcase full spectrum". Spectrum. Retrieved 8 March 2020.
  18. Moore AS (21 January 2007). "Hard-hitting look at autism is being shown at Sundance". New York Times. Retrieved 16 November 2008.
  19. 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.
  20. Liss J (2006-07-11). "Autism: the art of compassionate living". WireTap. Archived from the original on 2008-05-23. Retrieved 2008-03-21.
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