April 2023 Featured Interview
Foundation Focuses on Resources for the Profoundly Autistic,
Genetic Predispositions, and Early Predictors & Interventions
Interview with
Alison Singer
Co-Founder and President of the Autism Science Foundation
Photo Courtesy: Autism Science Foundation
About Alison:
Alison Singer is co-founder and president of the Autism Science Foundation, a nonprofit organization dedicated to funding innovative autism research and supporting the needs of people with autism. As the mother of a 25-year-old daughter with autism and legal guardian of her older brother with autism, she is a natural advocate.
Alison served on the federal Interagency Autism Coordinating Committee (IACC) for 12 years, where she chaired the Safety and Housing Workgroups and served on the subcommittee responsible for writing an annual strategic plan to guide federal spending for autism research. She currently serves on the executive boards of the Yale Child Study Center, the Seaver Autism Center at the Icahn School of Medicine at Mount Sinai, the Marcus Autism Center at Emory University, and the University of North Carolina Autism Research Center, as well as on the external advisory board of the CDC’s Center for Developmental Disabilities, and the New York State Immunization Advisory Committee. In addition, she serves on the board of directors of the International Society for Autism Research (INSAR) and chairs the INSAR Communications Committee.
Awards and recognitions include: Being named "autism champion" by the American Academy of Pediatrics; INSAR “Outstanding Research Advocate” award (2017); and the New York Families for Autistic Children Research Advocacy Award (2018).
Prior to founding the Autism Science Foundation in 2009, she served as executive vice president of Autism Speaks and as a vice president at NBC. She graduated magna cum laude from Yale University with a B.A. in economics and has an MBA from Harvard Business School. In 2020, she was awarded an honorary doctorate from Emory University.
In her free time, Alison enjoys Crossfit, kickboxing, and judging high school debate tournaments.
Alison Singer is co-founder and president of the Autism Science Foundation, a nonprofit organization dedicated to funding innovative autism research and supporting the needs of people with autism. As the mother of a 25-year-old daughter with autism and legal guardian of her older brother with autism, she is a natural advocate.
Alison served on the federal Interagency Autism Coordinating Committee (IACC) for 12 years, where she chaired the Safety and Housing Workgroups and served on the subcommittee responsible for writing an annual strategic plan to guide federal spending for autism research. She currently serves on the executive boards of the Yale Child Study Center, the Seaver Autism Center at the Icahn School of Medicine at Mount Sinai, the Marcus Autism Center at Emory University, and the University of North Carolina Autism Research Center, as well as on the external advisory board of the CDC’s Center for Developmental Disabilities, and the New York State Immunization Advisory Committee. In addition, she serves on the board of directors of the International Society for Autism Research (INSAR) and chairs the INSAR Communications Committee.
Awards and recognitions include: Being named "autism champion" by the American Academy of Pediatrics; INSAR “Outstanding Research Advocate” award (2017); and the New York Families for Autistic Children Research Advocacy Award (2018).
Prior to founding the Autism Science Foundation in 2009, she served as executive vice president of Autism Speaks and as a vice president at NBC. She graduated magna cum laude from Yale University with a B.A. in economics and has an MBA from Harvard Business School. In 2020, she was awarded an honorary doctorate from Emory University.
In her free time, Alison enjoys Crossfit, kickboxing, and judging high school debate tournaments.
About Autism Science Foundation:
The Autism Science Foundation (ASF) is a nonprofit organization dedicated to supporting people with autism and their families by funding scientific research to understand the causes of autism and to develop better treatments. Its mission is to support autism research by providing funding and other assistance to scientists and organizations conducting, facilitating, publicizing and disseminating autism research. The foundation also provides information about autism to the general public to increase awareness of autism spectrum disorders and the needs of individuals and families affected by autism. |
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Myrna Beth Haskell, executive editor, asked Alison about ASF's research focuses, challenges she has faced as a nonprofit leader in this field, and her personal perspective as a caregiver for both a daughter and a brother on the autism spectrum.
What was the inspiration behind founding Autism Science Foundation?
ASF was founded by parents and scientists working together to support research to help us understand the causes of autism and develop targeted treatments. We fund projects from genetic discovery to biomarker development, early diagnosis, and new treatment development. We focus on funding studies that will improve the real lives of real people.
What was the inspiration behind founding Autism Science Foundation?
ASF was founded by parents and scientists working together to support research to help us understand the causes of autism and develop targeted treatments. We fund projects from genetic discovery to biomarker development, early diagnosis, and new treatment development. We focus on funding studies that will improve the real lives of real people.
As co-founder and president of the foundation, what are your strengths as a leader?
I have a daughter with profound autism as well as an older brother with profound autism. I have been part of the autism world my entire life, and I can understand what our families are experiencing because I am experiencing it, too.
Also, I have an MBA and came from the business world. At its heart, a nonprofit is a business, and sometimes you have to make tough business decisions. If the business fails, you can’t help families.
As a leader in this field, what is the greatest challenge you've faced?
I have a daughter with profound autism as well as an older brother with profound autism. I have been part of the autism world my entire life, and I can understand what our families are experiencing because I am experiencing it, too.
Also, I have an MBA and came from the business world. At its heart, a nonprofit is a business, and sometimes you have to make tough business decisions. If the business fails, you can’t help families.
As a leader in this field, what is the greatest challenge you've faced?
Our greatest challenge has been securing resources for people with profound autism because the focus over the past ten years has really been on very high functioning people with autism. The autism spectrum is incredibly broad - too broad. People diagnosed with autism often have very little in common with each other. You can be diagnosed with autism and have severe intellectual disability, or you can have genius level IQ. You can have no language at all, or an overabundance of language. You can graduate from Harvard Law School or exit high school with a certificate of attendance. You can have terrible self-injurious behaviors and be aggressive towards others, or your social deficit could be getting nervous in the middle school cafeteria.
To the general public, autism has come to mean the very high functioning, quirky individuals you see on TV – The Big Bang Theory’s Sheldon Cooper, the participants in Love on the Spectrum, The Good Doctor, etc. The 30% of people with autism who meet the definition of “profound” (minimally or nonverbal, IQ under 50) are not the ones you see on TV. These individuals often don’t speak, so they can’t advocate for themselves. They rely on their families for that. |
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We need to go back to diagnosing subtypes of autism, like profound autism and Asperger syndrome, because the types of supports and services that people need vary tremendously based on their functional level. My daughter, for example, lives in a residential community for people with autism because she needs 24/7 supervision to keep her safe. A person with autism who graduates from college would likely need a different level of housing support, if any. Our family’s focus has mostly been on our daughter’s medical issues; we don’t see autism as an alternative way of being like neurodiversity advocates do. Her autism is a debilitating disorder that requires medical intervention.
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In terms of research, what areas continue to be underrepresented, and where has ASF focused most of its resources?
Our grants address the most urgent questions from the families we serve. These include: how can we translate the basic science we have into early prevention strategies; how can we diagnose autism before visible symptoms emerge; how can we measure the benefits of intervention; what mechanisms can we develop to re-open learning plasticity; and how can we better understand developmental trajectories, so we can provide the right intervention to each person. This year we also launched a new funding mechanism to focus on profound autism. |
Besides funding research grants, the foundation participates in several collaborative partnerships. Many females on the spectrum are diagnosed late – often into their teens and twenties – so this is an area of interest for many. Please describe the work of the Autism Sisters Project, an initiative of ASF and the Hilibrand Foundation.
The autism community has long known that boys are four times more likely than girls to be diagnosed with an autism spectrum disorder, but for many years the reasons why eluded scientists. ASF played a key role in funding and supporting efforts to understand gender differences in autism and learn more about a suspected ‘female protective effect.’
Besides funding research grants, the foundation participates in several collaborative partnerships. Many females on the spectrum are diagnosed late – often into their teens and twenties – so this is an area of interest for many. Please describe the work of the Autism Sisters Project, an initiative of ASF and the Hilibrand Foundation.
The autism community has long known that boys are four times more likely than girls to be diagnosed with an autism spectrum disorder, but for many years the reasons why eluded scientists. ASF played a key role in funding and supporting efforts to understand gender differences in autism and learn more about a suspected ‘female protective effect.’
Research supported by ASF has unequivocally proven the existence of the female protective effect, demonstrating that the brains of females and males with ASD work differently and that immune cells in the brain may be a critical link to the differences in males and females. The Autism Sisters Project has also provided clinical advice in situations in which genetic testing is a high priority for families.
As a result of the Autism Sisters Project’s findings, millions of dollars in additional research funding have now been allocated by other organizations, including the National Institutes of Health (NIH), to study gender differences in autism. |
"Research supported by ASF has unequivocally proven the existence of the female protective effect, demonstrating that the brains of females and males with ASD work differently and that immune cells in the brain may be a critical link to the differences in males and females." ~ Alison Singer |
ASF offers support for parents & siblings. The overall family dynamic has not always been a focus when it comes to research and supports. What has the foundation found to be most needed in this area?
In the past, family support has focused on parents, but recently we have been expanding our support to include siblings. There is really no such thing as an 'unaffected sibling.' ASF is collaborating with the Els for Autism Foundation to support the “Sam’s Sib’s Stick Together” program, which offers extra support for autism siblings, funds and shares research that focuses on sibs, and develops resources for siblings of all ages. In 2022, the number of siblings participating in our webinars and virtual meetings grew by over 25%.
What do you believe ASF’s greatest accomplishment has been?
Early diagnosis and treatment are key to better long-term outcomes for people with autism, which is why ASF has led the way in funding scientific research that unlocks early predictors in very young children. This important work has led to young children getting diagnosed earlier and more quickly receiving the treatment they need to thrive.
The Autism Science Foundation funds the Autism Baby Siblings Research Consortium (BSRC), a group of 40 universities around the globe who are committed to researching the earliest signs of ASD, primarily by studying infants who have a diagnosed older sibling and, thus, are at higher risk for autism. Last year, we launched the “Next Gen Sibs” project of the BSRC which focuses on evaluating the offspring of non-autistic siblings. Our goal is to improve access to early diagnosis and clinical care for the next generation of infants at risk for autism.
ASF funding has also helped to update the interventions students with autism receive in school and has made treatment accessible to more families. With the support of teachers and school administrators, ASF has worked to test new interventions in the real world to ensure that they can be used effectively and help children learn to the best of their potential. ASF funding has transformed the nature of school-based interventions - how they are designed, how they are implemented, and how they are measured. Because children with ASD in mainstream classrooms spend most of their young lives in school, improving the quality and efficacy of interventions by working directly with school administrators, teachers and aides is incredibly important. This area of research has had a direct benefit for families whose children with autism attend public schools.
In the past, family support has focused on parents, but recently we have been expanding our support to include siblings. There is really no such thing as an 'unaffected sibling.' ASF is collaborating with the Els for Autism Foundation to support the “Sam’s Sib’s Stick Together” program, which offers extra support for autism siblings, funds and shares research that focuses on sibs, and develops resources for siblings of all ages. In 2022, the number of siblings participating in our webinars and virtual meetings grew by over 25%.
What do you believe ASF’s greatest accomplishment has been?
Early diagnosis and treatment are key to better long-term outcomes for people with autism, which is why ASF has led the way in funding scientific research that unlocks early predictors in very young children. This important work has led to young children getting diagnosed earlier and more quickly receiving the treatment they need to thrive.
The Autism Science Foundation funds the Autism Baby Siblings Research Consortium (BSRC), a group of 40 universities around the globe who are committed to researching the earliest signs of ASD, primarily by studying infants who have a diagnosed older sibling and, thus, are at higher risk for autism. Last year, we launched the “Next Gen Sibs” project of the BSRC which focuses on evaluating the offspring of non-autistic siblings. Our goal is to improve access to early diagnosis and clinical care for the next generation of infants at risk for autism.
ASF funding has also helped to update the interventions students with autism receive in school and has made treatment accessible to more families. With the support of teachers and school administrators, ASF has worked to test new interventions in the real world to ensure that they can be used effectively and help children learn to the best of their potential. ASF funding has transformed the nature of school-based interventions - how they are designed, how they are implemented, and how they are measured. Because children with ASD in mainstream classrooms spend most of their young lives in school, improving the quality and efficacy of interventions by working directly with school administrators, teachers and aides is incredibly important. This area of research has had a direct benefit for families whose children with autism attend public schools.
In this issue, we are focusing on the transition to adulthood for people on the spectrum. As a parent of a profoundly autistic daughter who is now in her twenties, what can you tell our readers about her life today?
I think my daughter’s situation may be different than most because her autism is extremely profound. She moved to a residential community at age 16. She lives and works on a farm in the Catskills, raising animals and harvesting crops. She has loved animals since she was a toddler and now has a job she loves. Parents of adult children with profound autism need to remain as active and vigilant as ever. Our children don’t speak, and we need to be their voice. That doesn’t change when they turn 21. Where do you find sanctuary? Believe it or not, the place I find the most peace is with my CrossFit box. I am one of those annoying CrossFitters who probably talks about it too much. It’s all absorbing; you really can’t be thinking about anything else when you are lifting heavy weight over your head. The workouts are so intense, and they clear my mind completely. I'm sending a big shout-out to Empire State CrossFit in Mamaroneck, New York for being my sanctuary! |
Alison (center) with her Daughters Jodie (left) & Lauren
Photo Courtesy: Alison Singer |