As a historian of Applied Behaviour Analysis (ABA), I know ProPublica missed the real story about insurance and autism therapy. The question is, how could they get it so wrong?
ProPublica covers stories neglected by other media outlets, with a focus on corporate and government corruption and conflict. Given this mission, it is disappointing that ProPublica journalist Annie Waldman’s recent feature framed Applied Behaviour Analysis (ABA) as an imperiled lifeline for autistic children, while overlooking how ABA is an increasingly private equity-backed autism approach widely opposed by the people it claims to help.
As Waldman tells it, the battle around ABA centres on a “secret campaign” by United Healthcare to deny ABA hours to existing autistic clients—who often are enrolled in 40 hours of 1:1 ABA therapy per week. While insurers failing the insured is indeed a deplorable and all-too-common practice, Waldman does not mention is that ABA therapy is far from the evidence-based practice it claims to be; that neuro-affirming practices are supplanting ABA due to a groundswell demand for autistic-informed, non-compliance-based supports; and that autistic children and their families aren’t getting enough services, regardless of the form those services take.
Applied behavioral analysis used to be the only autism therapy covered under some insurance plans, even though ABA—which was popularized more than 60 years ago—is neither science-based nor appropriate for needs of autistic people. Autistic individuals and families, along with researchers, having increasingly flagged ABA and the considerable flaws in its method and claims.
While Waldman’s article is clearly biased in favor of ABA receiving the lion’s share of autism therapy funding, many families—and researchers—do not think ABA should be funded at all. In fact, of the major autistic self-advocacy groups in the world, not one supports ABA therapy. Given that autistic people are the recipients (end users) of ABA, how can such a therapy remain sustainable? The answer: it can’t. And service providers, insurers, and even some policymakers recognize this.
The End of ABA
We can only speculate about why ProPublica (and CNN, and then NPR) chose to ignore a major shift in autism services. It is distressing to see Waldman rely on scenery-chewing tropes of trial and triumph over autism, repeatedly echoing the ABA industry’s cultish talking point that full-time ABA therapy is “the only way” to help autistic children, especially those with significant support needs.
Yet ABA is used rarely outside of the U.S. and Canada. It established dominance as an autism therapy via the ABA lobbying juggernaut, and in the U.S. went state by state to get its coverage mandated by insurance carriers—typically as the only autism therapy covered, and squeezing out any competition. Waldman, who visited pro-ABA Reddit groups seeking personal stories for the piece, somehow missed the decades-long campaign by the ABA industry to de-fund competing therapies. As I document in my book, any autism services that was an alternative to ABA effectively got steamrolled.
In the wake of ABA mandates, autistic advocates, families, and providers organized against ABA, and now some ABA mandates are crumbling. I witnessed this firsthand in 2018 when Canada’s autistic self-advocacy organization (Autistics for Autistics) met with legislators and shared data that helped usher in a significant expansion of public insurance funding for alternatives to ABA and an end to the “ABA takes all” model. Today, public insurance in Ontario finally allows for essential supports like AAC devices, OT, SLP and school readiness programs.
Since Ontario’s provincial insurer switched to a diversified model of autism services, the idea of expanding ABA funding has fizzled. Now that families have other options, ABA isn’t at the center of the policy discussion anymore.
A Horrific History. A Checkered Research Record
In my book on ABA, I unearthed a set of practices based on Skinnerist behaviourism and forged from the cruelty of residential institutions. I learned that the founder of modern ABA (Ole Ivor Lovaas) leveraged the de-institutionalization movement to market his treatments—but then merely transferred the practices of residential institutions into his own clinical setting.
Lovaas used cattle prods and other cruel methods to torture his young autistic patients, all the while falsely claiming that ABA was the only way to save these kids from life in a residential institution. Lovaas also co-founded a form of gay conversion therapy (with George Rekers) that likewise tortured young gay men with ABA quack therapies—just like those he used on autistic kids.
The legacy of Lovaas’ use of torture is alive and well, as ABA’s professional associations continues to vaunt Lovaas. In the most glaring example of Lovaas’ legacy, the Judge Rotenberg Center has used Lovaasian shock torture as an “aversive” on its autistic students. In fact, the Rotenberg Center has fought tooth and nail against the FDA’s efforts to place a ban on their shock torture device. There is a robust campaign by parents, autistics and human rights advocates to support the FDA ban (and a noticeable silence from ABA professionals).
Meanwhile, rigorous research reviews, including a Cochrane Review, all show the evidentiary benefit of ABA to be low to non-existent, with some reviews revealing ABA to be methodologically flawed due to factors like its single case study methodology based on age-related developmental markers and therapist-parent self-reporting, as well as a high rate of undisclosed conflicts of interest and tendency to publish studies mainly in three journals internal to the discipline.
Insurers have recently tuned into the research. One of the earliest assessments was in 2019 when Tricare (the largest insurer in America) did its own analysis, confirming a dearth of evidence around the value of intensive ABA.
If ProPublica wants to explore ABA and insurance further, it could ask these questions:
- Why is the ABA industry so aggressive in its lobbying for insurance mandates?
- Why did state policymakers accept the lobbyist packages and not do their own research?
- As ABA loses its dominance, what new approaches are emerging?
There is a clear arc to the future of autism services—away from ABA and towards evidence-based and neuro-affirming practices. This is an exciting time of transformation for our community. It’s astonishing that in covering autism services, ProPublica could miss this historic moment altogether.