The Interagency Autism Coordinating Committee Meets on Nov. 30

More US appoints autism advocates to new federal panel reads a headline from an article in Reuters (November 27th). The new federal panel in question is the Interagency Autism Coordinating Committee (IACC). As noted in a November 27th press release from the U.S. Department of Health and Human Services (HHS): 

HHS Secretary Mike Leavitt announced today the members appointed to the Department of Health and Human Services’ new Interagency Autism Coordinating Committee. This committee coordinates efforts within the department to combat autism spectrum disorder through research, screening, intervention, and education. The committee will facilitate the efficient and effective exchange of information on autism activities among member agencies, and coordinate autism-related programs and initiatives.”This important committee will play a key role in coordinating autism research, services, and education related to autism spectrum disorder,” Secretary Leavitt said. “I’m pleased that its members bring to the committee a wide range and great depth of expertise, including research and program administration, advocacy and personal experience with the condition.”Authorized under the Combating Autism Act of 2006, the Interagency Autism Coordinating Committee advises the HHS Secretary and the Director of the National Institutes of Health (NIH). Secretary Leavitt delegated the authority to establish the committee to the NIH, which designated its National Institute of Mental Health (NIMH) to lead this activity.The committee chair is Thomas R. Insel, M.D., director of NIMH. 

These are the federal members of the IACC:

Duane Alexander, M.D., is director of the National Institute of Child Health and Human Development at NIH.

James Battey, M.D., Ph.D., is director of the National Institute on Deafness and Other Communications Disorders at NIH.

Ellen Blackwell, M.S.W., is a health insurance specialist of the Division of Community and Institutional Services, Disabled and Elderly Health Programs Group, Center for Medicaid and State Operations, Centers for Medicare and Medicaid Services where she serves as an expert on policies that affect individuals with autism spectrum disorders.

Margaret Giannini, M.D., F.A.A.P., is director of the HHS Office on Disability. Dr. Giannini serves as advisor to the Secretary on HHS activities relating to disabilities.Gail Houle, Ph.D., is associate division director of the Research-to-Practice Division, Early Childhood Programs, Office of Special Education Programs, Department of Education where she oversees programs for children with disabilities and their families funded through the Individual with Disabilities Education Act. Her expertise focuses on services for children with autism spectrum disorders.

Larke Huang, Ph.D., is senior advisor on children and a licensed clinical-community psychologist who provides leadership on federal national policy pertaining to mental health and substance use issues for children, adolescents and families for the Substance Abuse and Mental Health Services Administration.

Thomas Insel, M.D., is director of the National Institute of Mental Health at NIH.

Story Landis, Ph.D., is director of the National Institute of Neurological Disorders and Stroke at NIH.Cindy Lawler, Ph.D., is scientific program director of the Cellular, Organs, and Systems Pathobiology Branch, Division of Extramural Research and Training, National Institute of Environmental Health Sciences at NIH.

Patricia Morrissey, Ph.D., is commissioner of the Administration on Developmental Disabilities at the Administration for Children and Families.

Edwin Trevathan, M.D., M.P.H., is director of the National Center on Birth Defects and Developmental Disabilities (NCBDDD) at CDC. (Dr. Trevathan is representing Julie Gerberding, M.D., M.P.H., director of the CDC, on the committee.)

Peter van Dyck, M.D., M.P.H., is associate administrator of Maternal and Child Health at the Health Resources and Services Administration (HRSA).

Elias Zerhouni, M.D., is director of the National Institutes of Health. 

And these are the non-federal members:

Lee Grossman is president and CEO of Autism Society of America (ASA) and the parent of a young adult son with autism.

Yvette Janvier, M.D., is the medical director for Children’s Specialized Hospital in New Jersey. Dr. Janvier is also a clinical assistant professor in the Department of Pediatrics, Robert Wood Johnson Medical School.

Christine McKee, J.D., has developed and manages an in-home therapy for her autistic child, creating and/or assembling all of the therapy related materials.

Lyn Redwood, RN, MSN, is co-founder and president of the Coalition for Safe Minds. Ms. Redwood is also on the board of the National Autism Association.

Stephen Shore, Ed.D., is executive director of Autism Spectrum Disorder Consulting. Drawing on his experiences as an individual with an autism spectrum disorders diagnosis, Dr. Shore presents and consults internationally on adult issues pertinent to education, relationships, employment, advocacy, and disclosure.

Alison Tepper Singer, MBA, is executive vice president of Autism Speaks and is a member of the board of directors. She has both a daughter and an older brother with autism, giving her long-term, personal experience with the disorder. 

And this is the agenda for a November 30th Meeting of the IACC.

I have sent in a written statement and hope to be speaking at the 3pm Open Session for Public Comment.Now, about being an autism advocate: On the surface, this phrase “autism advocate” would seem to refer to someone who advocates on behalf of autistic persons and issues that pertain, and that directly affect, their needs and interests. This is how I think of the term “autism advocate”: I do my best to be an advocate for one autistic person in particular, my son Charlie. However, as is apparent in the title of the Reuters article, “autism advocate” has often become synonymous with “advocate against vaccines and mercury in vaccines” and “advocate for curing autism.” From the Reuters article:

Advocates who believe vaccines may cause autism will join mental health professionals and neurologists on a new federal panel to coordinate autism research and education, the U.S. Health and Human Services Department said on Tuesday………Some of the committee’s members have been at odds with government agencies in the past. Registered nurse Lyn Redwood, president of the Coalition for Safe Minds, has frequently accused the U.S. Centers for Disease Control and Prevention of covering up evidence that vaccines cause autism.

Another member, Lee Grossman, is president of the Autism Society of America, which also argues that vaccines can cause the disorder.

Many medical studies have failed to show evidence that vaccines or their ingredients cause autism. The Institute of Medicine, which advises the federal government on health matters, issued an unusually strongly worded report urging that researchers look elsewhere for a cause for autism but the advocacy groups are unconvinced and are vocal about it. 

I do what I can to advocate for autistic persons. Owing to the fact that I am, indeed, the mother of an autistic child who has many needs and that I also work full-time—and as it is pretty much impossible to get regular, affordable, quality after-school care for my son—-and due to my husband, Jim Fisher, having a long commute both ways to his job in New York because we live deep in the New Jersey suburbs as it is here that we have found the right kind of autism education for Charlie—-owing to all this, this weblog is my main source of advocacy:

I chose the word vox for the title of Autism Vox because vox and the -voc- in advocate share the same Latin root word, voco, “I call.” While “Autism Vox” literally means “Autism Voice,” by no means is this blog meant to be the “voice of autism.” There are many blogs by autistic authors that are all about autism from the inside out. As the mother of Charlie, my son who has autism, I am called everyday to translate his sometimes garbled speech and his needs. I am called to action and to advocate, and I believe that blogging on Autism Vox will help to spread the word. 

At this point in his life, Charlie is not able to say all the things that he needs to say to advocate for himself. I don’t know if he will be able to so represent himself someday. I do know that, precisely at 1.30pm today at school, Charlie (who does not, as far as we can tell, know how to tell time) looked at the door and then at his teacher and said “Hi Mom!” A few minutes later, I walked in. Earlier today, a classmate came up to Charlie and said “Hi Charlie” and Charlie—who tends to respond to adults but not to peers—turned right around and said “What, Andrew?” (Just to give you a better idea of what this exchange looked like: Andrew is a few months older than Charlie, but a good head shorter.) Charlie talks more and can talk more for himself every day: In the mean time, I have to say what I can in his best interests, and in the best interests of autistic persons—I’ll try my best.