In The Politics of Autism, I write:
As long as government funds so much research, politics will shape the questions that scientists ask and determine the kinds of research that receive funding. Politics will even influence which scientists the policymakers will believe and which findings will guide public policy. In the end, science cannot tell us what kinds of outcomes we should want. ABA “works” in the sense that it helps some autistic people become more like their typically developing peers. Most parents regard such an outcome as desirable, but not all people on the spectrum agree.
Private equity has shown initiative in its jump into autism services in recent years–a move that acknowledges the support autistic individuals and their families need.
In 2018, Blackstone acquired the Center for Autism and Related Disorders, the world’s largest autism therapy provider. Similar acquisitions by other firms soon followed.
In their efforts to streamline responsive services for this population, investors and others within and outside of the autism community should be aware of the paradigm shift happening around autism services as new evidence emerges, and particularly Applied Behavior Analysis (ABA) therapy, one of the main interventions for the disability.
ABA has been in my family’s life since my younger brother was diagnosed at the age of four in the 1990s, and I was about six years old. It is based on theories of behaviorism and operant conditioning, and is known as the gold standard by many in the caregiver and professional community.
However, several factors in recent years have compelled me to break away and try to shed some light on a troubling dynamic that exists in this space–and elevate the voices of those who have been hurt by ABA, in the hopes that others in both the professional and consumer communities will listen.
Last year, I retracted an article I wrote as a law student in a Harvard law journal, which gave a history of how health insurance came to provide coverage for ABA and argued for expanded access to coverage throughout the U.S.
The process of writing the initial article brought me into contact with several parent advocates and professionals in the community who then invited me to work with them as they launched a new organization centered around litigating to improve access to autism services, and primarily ABA, throughout the nation.
At the time, I didn’t realize the set of experiences I’d have over the next few years would be as significant and perspective-altering as they turned out to be.