Finding common ground
Parents of children, adolescents and adults with autism spectrum disorders told the committee that oversees autism research nationwide that they all want the same things for their families: research that points the way to rapidly advancing treatments and therapies that are safe and effective.
The clarion call for research that will let families and caregivers navigate the sometimes baffling array of therapies offered for autism spectrum disorders came during a unique town hall meeting held May 3 by the Interagency Autism Coordinating Committee.
The committee, which is composed of several agencies including the National Institutes of Health, Centers for Disease Control and Prevention and Medicare and Medicaid, as well as citizen advocacy organizations, will use input from the meeting to inform the strategic plan for autism research, to be given to Health and Human Services Secretary Michael Leavitt later this year.
Approximately 150 members of the public attended the meeting, held in the Cancer Center auditorium in conjunction with the UC Davis Children’s Center for Environmental Education and the UC Davis M.I.N.D. Institute. Town hall participants included three IACC representatives, Cindy Lawler of the National Institutes of Environmental Health Sciences, Lee Grossman, president of the Autism Society of America and Lyn Redwood, co-founder of the Coalition for Safe Minds, which links mercury in vaccines to neurological disorders.
The meeting was divided into two panel discussions, the first focused on conventional, alternative and complementary treatments for young children with autism. Speakers on the morning panel included M.I.N.D. Institute researchers Sally Rogers and Randi Hagerman, Sutter Health neurologist Michael Chez, Defeat Autism Now! physician Lynn Mielke and Lyn Redwood.
Citizen input during the morning highlighted a list of concerns, including the need for research into:
- Health problems often associated with autism spectrum disorders, including gastrointestinal, metabolic and immune dysfunctions;
- Developing treatments to target anxiety in people with autism;
- The efficacy and safety of the Defeat Autism Now (DAN!) protocol;
- Characterizing the many types of autism, or its phenotypes, as is being pursed in the M.I.N.D. Institute’s Autism Phenome Project;
- Comparing autism rates in vaccinated versus unvaccinated groups;
- Novel treatments that some parents believe have helped their children, such as nutritional and dietary interventions and hyperbaric oxygen therapy.
The afternoon panel turned its attention to the needs of older people with autism, including teens and adults across the age span. Afternoon panelists included Isaac Pessah, director, UC Davis Center for Environmental Health and Disease Prevention; Ruth Sullivan, a founder of the Autism Society of America and Lee Grossman, currently its president; Rick Rollens, a founder of the M.I.N.D. Institute; Pilar Bernal of Kaiser Permanente’s Autism Spectrum Disorders Center and Dena Gassner, an autism self advocate. Research recommendations from the afternoon discussion included:
- Develop improved quality-of-life measures for adults with autism spectrum disorders, beyond intelligence and language tests;
- Study the challenges of adolescence for people with autism spectrum disorders, including the challenges of the onset of puberty and sexual awakening;
- Identify and develop methods to reduce the cumulative affects of long term biomedical therapies;
- Develop strategies to reduce the stress of caring for people with autism and provide appropriate support for their families;
- Develop research to provide effective supports for higher-functioning people with autism.