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Sunday, January 22, 2017

A DeVos Company and an Autism "Treatment"

In The Politics of Autism, I write:
The conventional wisdom is that any kind of treatment is likely to be less effective as the child gets older, so parents of autistic children usually believe that they are working against the clock. They will not be satisfied with the ambiguities surrounding ABA, nor will they want to wait for some future research finding that might slightly increase its effectiveness. They want results now. Because there are no scientifically-validated drugs for the core symptoms of autism, they look outside the boundaries of mainstream medicine and FDA approval. Studies have found that anywhere from 28 to 54 percent of autistic children receive “complementary and alternative medicine” (CAM), and these numbers probably understate CAM usage.
Betsy DeVos, the nominee for Secretary of Education who seems not to understand the Individuals with Disabilities Education Act, has a connection to an unproven "treatment" for autism.
Matthew Goldstein, Steve Eder, and Sheri Fink report at The New York Times:
Betsy DeVos, the billionaire school choice advocate selected by President Donald J. Trump to serve as education secretary, is a strong supporter of using biofeedback technology to help children and teenagers enhance their performance in school.
Ms. DeVos and her husband, Richard DeVos Jr., are major financial backers of Neurocore, a Michigan company that operates drug-free “brain performance centers” that claim to have worked with 10,000 children and adults to overcome problems with attention deficit disorder, autism, sleeplessness and stress.
The company’s website claims impressive outcomes: for example, that 90 percent of people with attention deficit hyperactivity disorder report improvement and 76 percent “achieve a nonclinical status.” But Neurocore has not published results in the peer-reviewed literature.
From Neurocore's website:
Research shows that biofeedback can be an effective treatment. One study demonstrated a 26% reduction in reported symptoms on the Autism Treatment Evaluation Checklists (ATEC). Another study noted improvements in executive functioning, thought to be a central concern in autism. Parents in another study reported significantly improved communication and social skills following biofeedback.
It does not link to these purported "studies" nor does it provide further detail. Also note that the company did not use the "gold standard" Autism Diagnostic Interview-Revised (ADI-R) and Autism Diagnostic Observation Schedule (ADOS).  Instead it used ATEC, developed by Bernard Rimland and Stephen M. Edelson of the Autism Research Institute.