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Tuesday, February 13, 2024

The ABA Debate Continues

 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.  

 Jessica Winter at The New Yorker:

In recent years, A.B.A. has come under increasingly vehement criticism from members of the neurodiversity movement, who believe that it cruelly pathologizes autistic behavior. They say that its rewards for compliance are dehumanizing; some compare A.B.A. to conversion therapy. Social-media posts condemning the practice often carry the hashtag #ABAIsAbuse. The message that A.B.A. sends is that “your instinctual way of being is incorrect,” Zoe Gross, the director of advocacy at the nonprofit Autistic Self Advocacy Network, told me. “The goals of A.B.A. therapy—from its inception, but still through today—tend to focus on teaching autistic people to behave like non-autistic people.” But others say this criticism obscures the good work that A.B.A. can do. Alicia Allgood, a board-certified behavior analyst who co-runs an A.B.A. agency in New York City, and who is herself autistic, told me, “The autistic community is up in arms. There is a very vocal part of the autistic population that is saying that A.B.A. is harmful or aversive or has potentially caused trauma.”

Until recently, the American Medical Association officially endorsed “evidence-based treatment of Autism Spectrum Disorder including, but not limited to, Applied Behavior Analysis Therapy.” Last summer, the medical students’ body of the association proposed that the organization withdraw its support for A.B.A., citing objections by autistic self-advocates. The association did not adopt the resolution as submitted, but its house of delegates eventually approved an amendment removing any explicit reference to A.B.A., and autistic activists spread the word that A.B.A. no longer appeared to have the outright endorsement of the nation’s largest medical society.
In recent years, private equity has taken a voracious interest in A.B.A. services, partly because they are perceived as inexpensive. Private-equity firms have consolidated many small clinics into larger chains, where providers are often saddled with unrealistic billing quotas and cut-and-paste treatment plans. Last year, the Center for Economic and Policy Research published a startling report on the subject, which included an account of how Blackstone effectively bankrupted a successful A.B.A. provider and shut down more than a hundred of its treatment sites. Private-equity-owned A.B.A. chains have been accused of fraudulent billing and wage theft; message boards for A.B.A. providers overflow with horror stories about low pay, churn, and burnout. High rates of turnover are acutely damaging to a specialty that relies on familiarity between provider and client. “The idea that we could just franchise A.B.A. providers and anyone could do the work—that was misinformed,” [Alison] Singer, of the Autism Science Foundation, said.