A new IACC Autism Committee is Announced

The U.S. Department of Health and Human Services (HHS) today announced the appointments of new and returning members to the Interagency Autism Coordinating Committee (IACC), reauthorized under the Autism CARES Act. After an open call for nominations for members of the public to serve on the committee, Secretary of Health and Human Services, Sylvia M. Burwell, appointed this group of individuals to provide her with advice to advance research, strengthen services, and increase opportunities for people on the autism spectrum. The public member appointees include three adults on the autism spectrum, several family members of children and adults on the autism spectrum, clinicians, researchers, and leaders of national autism research, services, and advocacy organizations. Many of the appointed individuals serve dual roles, dedicating their professional careers to helping people on the autism spectrum because of their personal experiences with autism spectrum disorder (ASD). The first meeting of the new committee will take place on November 17, 2015 in Rockville, Maryland.

In addition to the new public members, the IACC will have a new chair when it reconvenes.  Dr. Thomas Insel, who served as the Director of the National Institute of Mental Health (NIMH) and as Chair of the committee for more than a decade, announced his planned departure for Google Life Sciences in at the end of October 2015.   Dr. Bruce Cuthbert, who will become Acting Director of NIMH on November 1, has been appointed to serve as the IACC Chair over the next year.

Autism research, services, and advocacy organizations represented by new and returning appointees to the committee include: Association of University Centers on Disabilities, Arc of the United States, Autism Science Foundation, Autism Speaks, Autism Society, Simons Foundation, and Autistic Self Advocacy Network. Federal departments and agencies represented on the committee include several agencies within HHS: Administration for Children and Families, Administration for Community Living, Agency for Healthcare Research and Quality, Centers for Disease Control and Prevention, Centers for Medicare & Medicaid Services, Food and Drug Administration, Health Resources and Services Administration, and National Institutes of Health; as well as Department of Education, Environmental Protection Agency, and Department of Defense .

The responsibilities of the committee include annually updating the IACC Strategic Plan for ASD, preparing an annual summary of advances in ASD research, monitoring federal ASD activities, and providing guidance to the HHS Secretary on matters related to ASD. 

The public members appointed by the Secretary to serve on the renewed IACC are:

David Amaral, Ph.D.

Dr. David Amaral is a new public member of the IACC. He is a Professor of Psychiatry, Behavioral Sciences and Neuroscience at the University of California, Davis. He is also Beneto Foundation Chair and Founding Research Director of the UC Davis MIND (Medical Investigation of Neurodevelopmental Disorders) Institute, and Director of the Autism BrainNet. Dr. Amaral conducts research on the neurobiology of ASD. He received a joint Ph.D. in psychology and neurobiology from the University of Rochester and carried out postdoctoral work at Washington University in neuroanatomy.

James Ball, Ed.D., B.C.B.A.-D.

Dr. Jim Ball has served on the IACC as a public member since 2012. He is a Board Certified Behavior Analyst (BCBA-D) and President and CEO of JB Autism Consulting. He has worked in the autism field for more than 25 years, providing educational, employment, and residential services to children and adults affected with autism. He is a Board member of the Autism Society's Board of Directors and is currently the Chair of the National Board.  He received his Doctor of Education degree from Nova Southeastern University in Fort Lauderdale, Florida.

Samantha Crane, J.D.

Ms. Samantha Crane is a new public member of the IACC. She is Legal Director and Director of Public Policy at the Autistic Self Advocacy Network (ASAN) and an autistic self-advocate. Ms. Crane previously served as staff attorney at the Bazelon Center of Mental Health Law, focusing on enforcing the right to community integration as established by the Supreme Court in Olmstead v. L.C.. Ms. Crane holds a B.A. from Swarthmore College, with high honors, in Psychology, and she received her J.D. degree from Harvard Law School. 

Geraldine Dawson, Ph.D.

Dr. Geraldine Dawson has served on the IACC as a public member since 2012. She is a Professor of Psychiatry and Behavioral Sciences in the Duke School of Medicine and a faculty member of the Duke Institute for Brain Sciences. Dr. Dawson also is Director of the Duke Center for Autism and Brain Development and President of the International Society for Autism Research.  Dr. Dawson is a licensed clinical psychologist and researcher who has published extensively on ASD, focusing on early detection, intervention, and early brain development. She received her Ph.D. in Developmental Psychology with a minor in Child Clinical Psychology from the University of Washington and was a postdoctoral fellow at the University of California at Los Angeles. 

Amy Goodman, M.A.

Ms. Amy Goodman is a new public member of the IACC. She is the Director of the Arc of the United States’ Autism NOW Resource and Information Center, which serves the needs of individuals with autism and their families. She is a self-advocate for individuals on the autism spectrum and holds a master’s degree in special education from Marshall University in West Virginia.

Shannon Haworth, M.A. 

Ms. Shannon Haworth is a new public member of the IACC.  She is the Public Health Program Manager for the Public Health team at Association of University Centers on Disabilities (AUCD) and a parent of a child on the autism spectrum. She has a master’s degree in Applied Behavior Analysis and a graduate certificate in Autism from Ball State University. She has also earned a Post Baccalaureate Graduate Certificate in Disability Leadership from Virginia Commonwealth University, is currently a doctoral candidate (DrPH) studying Public Health at Walden University, and is a certified Early Intervention Specialist for the state of Virginia.

David Mandell, Sc.D.

Dr. David Mandell has served on the IACC as a public member since 2012. He is an Associate Professor of Psychiatry and Pediatrics at the University of Pennsylvania's School of Medicine. He is a health services researcher and psychiatric epidemiologist whose work focuses on identifying the best ways to organize, finance and deliver services to children with autism and other psychiatric and developmental disabilities. Dr. Mandell holds a Bachelor of Arts in psychology from Columbia University and a Doctor of Science from the Johns Hopkins School of Hygiene and Public Health.

Brian Parnell, M.S.W., C.S.W.

Mr. Brian Parnell is a new public member of the IACC. He has led a distinguished career in child welfare and disabilities services and as an administrator of public and nonprofit agencies, having supervised and managed social service programs for more than 20 years. Mr. Parnell currently works at the Utah Division of Services for People with Disabilities, Department of Human Services, and helped develop Utah’s Medicaid Autism Waiver program.  Mr. Parnell is a parent of seven children, three of whom are on the autism spectrum.

Kevin Pelphrey, Ph.D.

Dr. Kevin Pelphrey is a new public member of the IACC. He is the Harris Professor in the Child Study Center and Professor of Psychology at Yale University and Director of the Yale Center for Translational Developmental Neuroscience. He also is the father of two children on the autism spectrum. Dr. Pelphrey's research focuses on the development of brain mechanisms for social cognition in children with and without ASD. He also is the Principal Investigator for a federally-funded multisite Autism Center for Excellence, “Multimodal Developmental Neurogenetics of Females with ASD.” Dr. Pelphrey received his Ph.D. in Psychology from the University of North Carolina at Chapel Hill.

Edlyn Peña, Ph.D. 

Dr. Edlyn Peña is a new public member of the IACC. She is an Assistant Professor of Higher Education Leadership at California Lutheran University (CLU) and is a parent of a child on the autism spectrum.  Dr. Peña’s research focuses on social justice issues for ethnic/racial minorities and students with autism and other developmental disabilities in higher education. She earned her Ph.D. in Education with a concentration in Higher Education from the University of Southern California. 

Louis Reichardt, Ph.D.

Dr. Louis Reichardt is a new member of the IACC. He is the Director of the Simons Foundation Autism Research Initiative (SFARI), whose goal is to improve the understanding, diagnosis, and treatment of ASD by funding innovative, high quality research. Prior to this, he was a Professor of Physiology and Biochemistry & Biophysics at the University of California, San Francisco, where he directed its neuroscience graduate program and Herbert W. Boyer Program in Biological Sciences. His research has focused on neurotrophins, a family of proteins that play a key role in brain development and function. Dr. Reichardt was a Fulbright scholar and earned his undergraduate degree from Harvard University and a Ph.D. in Biochemistry from Stanford University.

Robert Ring, Ph.D.

Dr. Robert Ring has served on the IACC as a public member since 2014. He is the Chief Science Officer (CSO) for Autism Speaks, the largest autism science and advocacy organization in the U.S. Dr. Ring is responsible for leading the science program at Autism Speaks, which features a diverse portfolio of research investments targeting medical research on the underlying biology of ASD, diagnosis, treatment, etiology, public health, and innovative technologies. Dr. Ring holds adjunct faculty appointments in the Department of Psychiatry at Mount Sinai School of Medicine (New York) and the Department of Pharmacology and Physiology at Drexel University College of Medicine (Philadelphia). He holds a Ph.D. in Molecular Neurobiology from City of Hope National Medical Center in Southern California.

John Elder Robison

Mr. John Elder Robison has served on the IACC as a public member since 2012.   He is the Neurodiversity Scholar in Residence at the College of William & Mary in Williamsburg, Virginia, where he teaches courses on neurodiversity and living with autism. He is an autistic adult who is best known for working to increase public understanding of autism, and he is the author of several popular books about living life with autism, including Look Me in the Eye, My Life with Asperger's, Be Different: Adventures of a Free-Range Aspergian, and Raising Cubby. 

Alison Singer, M.B.A.

Ms. Alison Singer has served on the IACC as a public member since 2007. She is Co-Founder and President of the Autism Science Foundation, a not-for-profit organization launched in April 2009 to support autism research by providing funding and other assistance to scientists and organizations conducting, facilitating, publicizing, and disseminating autism research. Ms. Singer is the mother of a daughter with autism and legal guardian of her adult brother with autism. Ms. Singer graduated magna cum laude from Yale University with a B.A. in Economics and has an M.B.A. from Harvard Business School.

Julie Lounds Taylor, Ph.D.

Dr. Julie Lounds Taylor is a new public member of the IACC. Dr. Taylor is an assistant professor of Pediatrics and Special Education at Vanderbilt University and an Investigator at the Vanderbilt Kennedy Center. Her research focuses on factors that promote a positive transition to adulthood for individuals with ASD and their families, as well as the impact of having a sibling with an intellectual or developmental disability. She has published research on a variety of autism and disability services-related issues, including sex and gender differences, peer victimization, transition planning, secondary education and vocational training, employment, and daily life skills for people on the autism spectrum. Dr. Taylor earned her Ph.D. in developmental psychology at the University of Notre Dame.

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The IACC is a Federal advisory committee that was created by Congress in an effort to accelerate progress in ASD research and services. The IACC works to improve coordination and communication across the Federal government and work in partnership with the autism community. The Committee is composed of officials from many different Federal agencies involved in autism research and services, as well as adults on the autism spectrum, parents and family members of individuals on the autism spectrum, advocates, researchers, providers, and other members of the autism community. The documents and recommendations produced by the IACC reflect the views of the Committee as an independent advisory body and the expertise of the members of the Committee, but do not represent the views, official statements, policies or positions of the Federal government.  For more information on the IACC, please visit:www.iacc.hhs.gov.

John Elder Robison is an autistic adult and advocate for people with neurological differences.  He's the author of Look Me in the Eye, Be Different, Raising Cubby, and Switched On. He serves on the Interagency Autism Coordinating Committee of the US Dept of Health and Human Services and many other autism-related boards. He's co-founder of the TCS Auto Program (A school for teens with developmental challenges) and he’s the Neurodiversity Scholar in Residence at the College of William and Mary in Williamsburg, Virginia and a visiting professor of practice at Bay Path University in Longmeadow, Massachusetts.  

The opinions expressed here are his own.  There is no warranty expressed or implied.  While reading this essay will give you food for thought, actually printing and eating it may make you sick.