Tuesday, the Interagency Autism Coordinating Committee’s (IACC) Subcommittee for Services Research and Policy held a teleconference to address several alterations to the organization’s 2012 Strategic Plan, primarily focusing on services and lifespan issues for individuals with autism spectrum disorders.
“They have changed more than any other part of the plan,” said Dr. Thomas Insel, director of the National Institute of Mental Health (NIMH) and IACC Subcommittee for Services Research and Policy Chair. “We want to really keep this update focused on major breakthroughs and high impact changes in policies.”
Dr. Insel said he wants to have the strategic plan completed by Dec. 18, with the possibility of taking the updates to a full committee hearing before the end of the year.
“Some of the most important innovations [and] breakthroughs of the last 18 months are not directly about autism,” he said, “but other changes that are happening, in this case, in biomedical research.”
He said that recent research since Jan. 2011 has provided “new opportunities” in studying autism, suggesting that stakeholders “think beyond autism literature” to examine findings that may become more relevant to autism spectrum disorders in the future.
“A lot of people expressed frustration with the scope and priorities of the ways chapter five and six (of the 2012 Strategic Plan) have been written,” said Dr. David Mandell, IACC Subcommittee for Services Research and Policy Co-Chair.
He said that new research findings should incorporated into the Strategic Plan in ways that are consistent with previous chapters while additionally addressing areas that would be expanded upon in subsequent updates.
Regarding services, the subcommittee addressed numerous topics, including Medicaid access, the viability of establishing an “Amber Alert” like protocol for autistic children that may wander away from their homes and ways to improve support for families that have children with autism spectrum disorders.
Dr. Mandell said that tracking the prevalence of wandering among children with autism spectrum disorders could provide “a new data element” for ASD surveillance. Dr. Insel agreed, stating that more in-depth tracking would “provide a data source that wasn’t there before” for researchers and analysts.
Both Mandell and Insel agreed that easily-readable, accessible materials for families and community stakeholders were desirable. “We need to look at the language,” Dr. Insel said, “and think about finding a different way to describe [terminology.]” Dr. Mandell said that family support material also needed to be clear and simplistic — “not peer-reviewed journals,” he added.
Insel and Mandell both said that better assessments of the needs and costs associated with raising children with autism spectrum disorders are vital for families, especially economically disadvantaged ones.
“As someone who’s done a bit of economic research,” Dr. Mandell said, research should be focused on how specific intervention programs would reduce particular “societal costs.”
He believes effective models are “sorely needed” to help families cope not only with the economic difficulties of raising a child with an autism spectrum disorder, but also many of their associated emotional needs, like alleviating stress burdens.
“If we are going to be prescriptive,” he concluded, “we should also be specific.”