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Sunday, March 17, 2024

The Argument Over a Long-Standing Autism Intervention

Jessica Winter
The New Yorker
Originally posted 12 Feb 24

Here are excerpts:

A.B.A. is the only autism intervention that is approved by insurers and Medicaid in all fifty states. The practice is widely recommended for autistic kids who exhibit dangerous behaviors, such as self-injury or aggression toward others, or who need to acquire basic skills, such as dressing themselves or going to the bathroom. The mother of a boy with severe autism in New York City told me that her son’s current goals in A.B.A. include tolerating the shower for incrementally longer intervals, redirecting the urge to pull on other people’s hair, and using a speech tablet to say no. Another kid might be working on more complex language skills by drilling with flash cards or honing his ability to focus on academic work. Often, A.B.A. targets autistic traits that may be socially stigmatizing but are harmless unto themselves, such as fidgeting, avoiding eye contact, or stereotypic behaviors commonly known as stimming—rocking, hand-flapping, and so forth.

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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.”

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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,” Singer, of the Autism Science Foundation, said.