Parents and caregivers of children, teens and adults with autism spectrum disorders are among those invited to participate in a daylong town hall meeting on May 3, from 10 a.m. to 5 p.m. at UC Davis Cancer Center, 4501 "X" St., Sacramento, to discuss priorities for current and future autism research. The town hall meeting is sponsored by the Interagency Autism Coordinating Committee, the federal advisory committee that coordinates autism spectrum disorders activities nationwide as mandated by the Combating Autism Act of 2006.
"What we are looking for is input from parents into what should be the priorities for research into treatments for autism. While there are many different treatments that are being tried, the solid data in well-controlled clinical trials are not always there to support those therapies," said Cindy Lawler, a representative of the IACC.
The meeting is the first of its kind conducted by the Interagency Autism Coordinating Committee, and follows a Request for Information for public input issued in December 2007 as the committee began to develop a strategic plan for ASD research. The committee is composed of several different Department of Health and Human Services agencies including the National Institutes of Health, Centers for Disease Control and Prevention, the Centers for Medicare and Medicaid Services, and the Department of Education.
Lawler, who works in the National Institutes of Environmental Health Sciences of the National Institutes of Health, said the first of its kind meeting is being held in Sacramento because UC Davis "is a hotbed of environmental health sciences research" with a "critical mass of researchers" exploring autism therapies.
"At UC Davis we have a very strong commitment to research into autism's causes and treatments," said Isaac Pessah, professor, Department of Molecular Biosciences in the College of Veterinary Medicine and director of the UC Davis Children's Center for Environmental Health and Disease Prevention. "This town hall is essential in engaging public input into the IACC strategic plan and it gives stakeholders and caregivers a chance to guide the NIH toward identifying critical areas where funding is needed for autism research."
The town hall meeting will be divided into two parts. The morning session will explore interventions for young children. The afternoon session will examine interventions for adolescents and adults with autism spectrum disorders. The public will be invited to comment after each panel discussion.
The morning's panelists will include Sally Rogers, a professor of psychiatry and behavioral sciences, and a UC Davis M.I.N.D. Institute researcher whose work focuses on effective intensive intervention for toddlers with autism; and internationally known fragile X researcher Randi Hagerman, medical director at the M.I.N.D. Institute and professor, endowed chair in fragile X research, at the UC Davis School of Medicine.
Each panel will include one public IACC representative. Lyn Redwood will sit on the morning panel. She is the co-founder of the Coalition for Safe Minds, a private nonprofit organization founded to investigate and raise awareness of the risks to infants and children of exposure to mercury from medical products, including thimerosal in vaccines. Neurologist Michael Chez, who specializes in childhood autism and is an expert in the medical management of children with autism spectrum disorders, will moderate the morning panel.
Lawler said that, to date, autism treatment research has been focused primarily on young children, with little attention directed at treatment and interventions for older children, adolescents and adults with autism spectrum disorders. The Interagency Autism Coordinating Committee is seeking community input on research priorities and strategies to develop a stronger evidence base for interventions that are appropriate across the lifespan of individuals with autism.
The IACC representative on the afternoon panel will be Lee Grossman, president and chief executive officer of the Autism Society of America. Other panelists will include Pilar Bernal, founder and director of the Autism Spectrum Disorders Center of Kaiser Permanente of Northern California, and Dena Gassner, an autism "self advocate" who describes herself as a second generation member of three generations of people with autism.
Lawler said the research priorities identified in these areas will help to answer many key questions that confront families affected by autism, such as: When should I be concerned about my child's development? How can I understand what is happening to my child? What caused this to happen and how can we prevent it? Where can I turn for services? What does the future hold?
"Families are affected by autism every day," Lawler said. "They need ways to help their family members sooner rather than later."
The meeting will be free and open to the public. Advance registration is not required. The auditorium will seat up to 250 people. Event parking will be available in Visitor Lot 4 adjacent to the Cancer Center.