When a child receives an autism diagnosis, caregivers routinely receive a referral for a hefty dose of applied behavior analysis, or ABA. Up to 40 hours a week of one-on-one treatment is the child’s best chance at a normal life, they’re told. Thanks to decades of lobbying, insurance likely will cover the cost, which can total tens of thousands of dollars a year.
But what if millions of children have, over the last 37 years, been subjected to a treatment that does not actually work? What if, as former patients say, the therapy — designed to “extinguish” undesirable autistic traits through repeated, forced compliance with specific commands — causes severe damage to mental health, including PTSD?
Beth Hawkins spent 15 months documenting mounting concerns about ABA, including an ongoing Department of Defense analysis and a multi-university meta-review of decades of data that have found little evidence of beneficial results. She interviewed scholars across multiple disciplines; unearthed archival material to explain how one psychologist’s experimental treatment exploded into a multi-billion-dollar business; spoke with educators about how ABA’s dominance in schools has crowded out more promising therapies; and heard families and autistic adults describe their personal ABA experiences.
Importantly, autistic researchers — historically shut out of formal studies — have begun compiling their own documentation of ABA’s often-traumatic impacts, given voice and agency by a burgeoning civil rights movement empowering people with disabilities.
In fact, there is growing pushback, led by autistic people themselves, against what has long been considered the “gold standard” therapy. Opposing ABA’s goal of making autists seem more “normal,” increasing numbers are proudly owning their neurotype as an identity and rejecting the idea of compliance with neurotypical social standards as progress toward inclusion.
This new movement was given voice in a Q&A Beth did with an autistic lobbyist who had been told in school to consider a career in fast food. Today, she is an advocate for disability culture and spearheading a drive to enshrine a first-of-its kind state law mandating teacher training on ableism.
Proponents of this new culture reject the notion of an autism “cure,” which they say presupposes it’s not possible to have a strong, positive autistic identity. Indeed, in the 1980s, when ABA was becoming established, Americans viewed disability through a medical model, with diagnoses arrived at using checklists of deficits. Visions of what a disabled person’s life could be were controlled by non-disabled people.
Beth’s groundbreaking investigation details some byproducts of that thinking: shoddy research protocols that would not be tolerated in investigating therapies for non-disabled people; institutional conflicts of interest involving billions of dollars in profits; and a disregard for the experiences of the patients the treatment is supposed to help.
At a time when 1 in 36 American children receives an autism diagnosis, a once-disenfranchised community is rewriting traditional definitions of disability, demanding the right to self-determination and claiming power in the face of ingrained resistance from the powerful ABA industry.
