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.
The book also includes an extensive discussion of autism service providers.
At WHYY-FM in Philadelphia, Liz Tung does a deep dive on the ABA debate:
When parents first heard about Applied Behavior Analysis (ABA) in the 1990s, it felt like a lifeline — for both them and their autistic kids.
ABA was an intensive therapy based around a system of rewards and punishments designed to change children’s behavior; through repetition and consistent reinforcement, good behaviors could be formed, while undesirable ones were eliminated.
The therapy was individualized and time-consuming — to the tune of 40 hours a week — and it needed to be delivered early in a child’s development.
Suddenly parents were seeing positive results. For some, it offered the promise of normalcy for their kids; for others, the humbler goal of making their family lives more manageable.
It was also expensive — so parents lobbied to have it covered by insurance or schools. By the 2010s, ABA became a standard treatment for kids with autism.
But over the past few years, that first generation of kids to receive intensive ABA has grown up — and they’re telling a different story.
Instead of being a key that unlocked their freedom — and that unlocked their brains from the “confines” of autism — many have criticized ABA as harmful and even abusive, calling it “conversion therapy for autistic people.”
ABA practitioners and experts have defended the therapy, saying that they’ve seen major changes for the better, and that the progress it offers outweighs its potential for damage. But self-advocates aren’t convinced — with some saying that, with other therapeutic options available, there’s no reason to keep ABA at all. Maybe, they say, it should be scrapped altogether. Maybe it’s simply rotten to the core.
