#*ableism

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.

Hammond is now the mother of two autistic sons. Her older son, Aidan, who is sixteen, is nonverbal and needs round-the-clock care. When he was young, he attended a traditional school, but teachers, Hammond said, “were literally calling me every single day: ‘Can you please come here and sit with him? Can you please pick him up?’ ” Hammond tried physical, occupational, and speech-language therapy for Aidan, but he was “kicked out of every single one,” she said. Therapists “felt that his behaviors were interfering with his learning, and that he needed to be in A.B.A.” A.B.A. clinicians, she added, “were at least willing to look at my son.”

She drove him to A.B.A. appointments at a clinic about an hour from their home in southwest Texas, but stopped treatment after just a few sessions. This was partly due to the commute and the co-pay, but also to a discomfort with the approach, which required Aidan to spend long periods, over multiple sessions, solving a puzzle in which he matched shapes to the right-sized holes. “He’s having to do this over and over and over again,” Hammond recalled, “and, when he picked the right thing, it’s, like, Ooh, here’s a Skittle! Like he’s a puppy.”

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.”

“Something that happened to me and was beyond my control has left me like a machine that’s been switched off – disabled – unable to do anything that a 21-year-old of my intelligence and interests might want or need to do,” she wrote.

That young correspondent, Maeve Boothby O’Neill, spoke Russian, listened to jazz and read constantly. She loved musical theater, especially the shows “Wicked,” “Billy Eliot” and “Into the Woods.” She was plotting out a series of 1920s mystery novels set in the villages of Dartmoor, an upland expanse of bogs and rivers and rocky hills in southwest England where Maeve and her mother had once lived.

Maeve died on October 3, 2021. She was 27. On the death certificate, her physician noted “myalgic encephalomyelitis” — an alternate name for the illness known as chronic fatigue syndrome — as the cause. It is rare for a death to be attributed to either ME or CFS.