Autism Speaks Chief Science Officer Rob Ring sat down today with families to listen to their concerns and discuss research priorities. The afternoon meeting launched “Autism Speaks to Families,” a nationwide program of discussions to further strengthen the organization’s partnership with the larger autism community.
Dr. Ring met with ten parents in Autism Speaks' New York offices, as well as with other members of the community joining via Autism Speaks live Ustream channel. Autism Speaks President Liz Feld also joined the discussion.
“So often, the interests of parents – your experiences – provide us clues that give rise to meaningful scientific pursuits that might otherwise be missed,” Dr. Ring said in welcoming the participants.
One of the parents' foremost concerns involved the lack of physician understanding of autism-associated health issues. They called for more research to raise awareness of these problems and provide effective treatments. In particular, they called for more research on treatment for gastrointestinal (GI) disorders that can worsen autism behaviors.
“If a treatment could improve a child’s quality of life even 50 percent, that would be huge,” one mother said.
The parents likewise called for research on safe and effective treatments for autism-associated immune dysfunction. In particular, they highlighted the high rates of allergies, food intolerances, chronic fungal infections and asthma reported by families affected by autism.
“Often times these issues tend to be subtle, not enough to budge the needle for typical doctors,” one mother commented. “But they definitely affect quality of life.”
Several parents called for more research on the safety and effectiveness of the alternative treatments that many families use with their children. “Parents are going out on their own because orthodox medicine isn’t helping their children,” one father said.
“Some of these treatments are reasonably safe with some rationale,” a mother added. “But some are just bonkers. We need resources to go toward studying what parents are already trying, to see what’s safe and effective and what’s dangerous.”
Anxiety and related behaviors were another high priority for parents, as was the development of practical support tools from teachable social stories to high-tech assistive devices.
Dr. Ring and the parents also discussed the challenge of designing clinical studies in ways that better identify the sometimes small subset of individuals who benefit from a given treatment. They also called for study designs that accommodate nonverbal individuals.
“We are so committed to helping families right now,” Feld said. “As you guys know better than we do, the agenda is so big because it has to be. But in my mind there’s nothing too small for us to hear. If you’re living with a challenge then tens of thousands of parents across the country are lying awake at night dealing with the same thing. We want to hear from you because whatever we can do each day, we want to do now.”
“This conversation is not a ‘one off’,” Feld added in thanking the parents who spent the afternoon at the New York office. “This is an ongoing conversation.”
The 90-minute roundtable discussion (embedded above) will remain available on the Autism Speaks Ustream channel here. Register at Ustream to receive alerts for future live webstreams of "Autism Speaks with Families" webstream events.