As a historian of Applied Behavior Analysis (ABA), I know that ProPublica missed the real story about insurance and autism therapy. The question is: how could they have got it so wrong?
ProPublica covers stories neglected by other media, with a focus on corruption and conflict in corporations and government. Given this mission, ProPublica journalist Annie Waldman is disappointing last function referred to applied behavior analysis (ABA) as a lifesaver for autistic children in distress, while ignoring the fact that ABA is increasingly supported by private capital an approach to autism that is opposed by the people it claims to lend a hand.
The fight over ABA centers on a “secret campaign” by United Healthcare to deny ABA hours to existing autism clients, who are often enrolled in 40 hours of 1:1 ABA therapy per week, Waldman says. While insurers failing the insured is indeed a deplorable and all too common practice, Waldman fails to mention that ABA therapy is far from evidence-based practice he says yes; This neuro-affirmation practices are displacing ABA due to increasing demand for autism-based support and non-adherence; and that autistic children and their families do not receive enough services, whatever form those services take.
Applied behavioral analysis was the only autism therapy covered by some insurance plans, even though ABA – popularized more than 60 years ago – is neither science-based nor tailored to the needs of people with autism. Autistic people and family along with researchersdue to the increasing whistleblowing of ABA and the significant errors in its method and claims.
Although 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 believe that ABA should be funded at all. In fact, of the major autism self-advocacy groups in the world, none support ABA therapy. Given that the audience (end users) of ABA are autistic people, how can such therapy remain sustainable? Answer: it can’t. Service providers, insurers and even some policymakers realize this.
The end of ABA
We can only speculate why ProPublica (i CNNand then NPR) has chosen to ignore a fundamental change in autism services. What’s troubling is that Waldman relies on scenery-chewing tropes trial and triumph over autismrepeatedly repeating the ABA industry’s iconic thesis that full-time ABA therapy is “the only way” to lend a hand autistic children, especially those who need significant support.
However, ABA is rarely used outside the United States and Canada. It established its dominance as an autism therapy through the lobbying juggernaut ABA, and in the U.S. it passed state by state to gain coverage required by insurers – usually as the only autism therapy covered and crowding out all competition. Waldman, who frequented ABA advocacy groups on Reddit in search of personal stories for this article, somehow missed the decades-long campaign by the ABA industry to defund competing therapies. As I document in my book, any autism services that were an alternative to ABA have been effectively thwarted.
In the wake of the ABA mandates, autism advocates, families, and providers organized against the ABA, and now some ABA mandates are failing. I witnessed this firsthand in 2018, when the Canadian autistic self-defense organization (Autistics for Autistics) met with legislators and shared data that helped usher in a major expansion of public insurance funding for alternatives to ABA and put an end to the “ABA takes all” model. Today, public insurance in Ontario finally allows for basic supports such as AAC devices, OT, SLP and school readiness programs.
Since Ontario’s provincial insurer moved to a differentiated autism services model, the idea of increasing ABA funding fell through. Now that families have other options, ABA is no longer at the center of the political discussion.
A terrifying story. Checkered research record
IN my book at ABA, I discovered a set of practices based on Skinnerian behaviorism and derived from the cruelty of welfare institutions. I learned that the founder of up-to-date ABA (Ole Ivor Lovaas) used the deinstitutionalization movement to market his therapies, but then merely transferred the practices of residential institutions to his own clinical setting.
Lovaas used cattle prods and others cruel torture methods their youthful autistic patients, all the while falsely claiming that ABA is the only way to save these children from a life in institutional care. Lovaas is also a co-founder a form of homosexual conversion therapy (along with George Rekers) who also tortured youthful gays with ABA quack therapies – the same ones he used on autistic children.
Lovaas’ legacy of torture lives on, and the ABA professional associations continue to praise Lovaas. In the most egregious example of Lovaas’ legacy, the Rotenberg Judges Center used Lovaasian shock torture as “aversion” on their autistic students. In fact, the Rotenberg Center fought tooth and nail against the FDA’s efforts to ban the apply of their shock torture device. Parents, autistic people and human rights activists are campaigning strongly for this solution they support the FDA ban (and noticeable silence from ABA professionals).
Meanwhile, stringent reviews of research, including: Cochrane Reviewall indicate that for some, the evidentiary benefits of ABA are diminutive or nonexistent reviews stating that ABA has methodological shortcomings due to factors such as a single-case study methodology based on age-related developmental markers and therapist and parent self-reports, as well as a high rate of undisclosed conflicts of interest and a tendency for research to be published primarily in three journals within the discipline.
Insurers have recently become involved in the research. One of the earliest ratings occurred in 2019, when Tricare (America’s largest insurer) conducted his own analysisconfirming the lack of evidence for the value of intensive ABA.
If ProPublica wants to learn more about ABA and insurance, it can ask the following questions:
- Why does the ABA industry lobby so aggressively for insurance mandates?
- Why did state policymakers accept lobbyists’ packages and not conduct their own research?
- What fresh approaches are emerging as ABA loses its dominance?
There is a clear direction for the development of services for people with autism – away from ABA and towards evidence-based and neuro-affirming practices. This is an invigorating time of transformation for our community. It’s astonishing that in providing services to people with autism, ProPublica could even miss this historic moment.