In The Politics of Autism, I discuss the Interagency Autism Coordinating Committee and research priorities.
Ed Pilkington at The Guardian:
Autism groups and researchers have reacted with alarm to a federal research roadmap drawn up by advisers handpicked by the US health secretary, Robert F Kennedy Jr, fearing it will promote unproven fringe therapies at the expense of promising genetic research.
A slew of scientific bodies and groups within the autism community are warning that the 336-page plan risks deflecting federal dollars away from potentially groundbreaking genetic research in favor of unreliable alternative therapies.
There is little or no evidence, they say, that many of the proposed treatments work, or that they even fit the definition of autism.
“So much of the plan is fringe science that is absolutely not ready for prime time,” said Helen Tager-Flusberg, an emeritus professor at Boston University and founder of the Coalition of Autism Scientists.
Alliances of autistic people are especially worried that the plan could make it easier for them to be sent to institutions. The plan calls for government agencies to try out “supported-living models” such as “farmstead or campus-based communities”, which the groups fear could revive forms of institutional confinement.
The strategic plan is the work of the Interagency Autism Coordinating Committee (IACC), a body that for 25 years has advised US health secretaries on federal efforts related to autism.
Alison Singer at MedpageToday:
Parents report that children with autism lose skills at all ages, including during toddlerhood, and through adolescence into adulthood. The new plan puts considerable emphasis on finding medical causes of early childhood regression (immune, metabolic, mitochondrial, infectious, gastrointestinal) but does not give comparable prominence to regression as a manifestation of the underlying genetics and neurodevelopmental biology of autism itself.
We can read between the lines. Committee members' comments make clear that this framing is intended to justify further research into vaccines as a cause of autism, despite decades of research and dozens of studies finding no causal link between vaccines and autism.
Also, despite a significant number of public comments calling for substantial revisions to the plan, and the fact that thousands of pages of public comments were not distributed to committee members until the night before the meeting, the IACC chair completely shut down efforts by committee members to delay voting on the plan until all the comments could be read and considered.
