Autism’s changing definitions and funding models--& the anomaly of Donald Triplett
Part 3 in a 5-part series of excerpts from my book about the troubled history & legacy of ABA autism therapy.
Buy my ebook, ABA: The Troubled History of Today’s Most Popular Autism Therapy, here.
By 2019, in partnership with Autism Speaks, ABA interest groups in the US and Canada had established a kind of monopoly on service provision in both public and private health care, and school policy. They had engaged in a lobbying blitz, going state by state and province by province to ensure that public and private insurers in all 50 US states and across Canada were mandated (required) to fund the costly program—often at the expense of funding any other forms of autism therapy.
These efforts effectively shut out competition and codified the idea that ABA (despite no clear evidence of benefit) was the “gold standard of care” for autism--even though better approaches existed. Most parents had to pay for these better approaches (such as speech therapy and occupational therapy) out of their own pockets, making it impossible for low-income families to get these services for their children.
In his March 2021 expose in The Nation about the ABA industry, journalist and father John Summers critiqued this market dominance. He wrote: “ In no other area of child development does government prescribe and mandate access to one—and only one—packaged therapy.” A few months later on my podcast, he asked a question on many of our minds:
“Why is my son getting a service model that is based on the whole philosophy that was discredited 40 years ago?”
Let’s look closer at how that happened.
A brief history of the autism diagnosis & therapies
In her essay How Autism Became Autism, Dr. Bonnie Evans provides an incisive history of the dynamic definition of autism. As she documents, the concept of autism was first coined in 1905 by Freud to describe infants’ hallucinations during self-soothing.[1] In 1911, German psychiatrist Eugen Bleuer built upon this concept to describe autism as a symptom within the diagnosis of schizophrenia (a phenomenon Bleuer had also originally defined).
It was 1943 when child psychologist Leo Kanner described autism as a discrete condition, separate from its former categorization as a subtype within schizophrenia or other illnesses. Describing a 5-year-old patient (called Donald T.), Kanner summarized the condition as unto itself, like he believed his patient to be:
“He paid no attention to persons around him. When taken into a room, he completely disregarded the people and instantly went for objects, preferably those that could be spun.”
As Evans documents, Kanner used the term “autism” to describe 11 of his pediatric patients. He analyzed the parents, too, as did others like psychologist Bruno Bettelheim, claiming they tended to lack emotional warmth. (This is sometimes called the '“refrigerator mother” hypothesis.
Meanwhile, across the ocean, Dr. Hans Asperger was researching a group of children he called his “little professors”. While they shared some autistic characteristics, they also tended to be early speakers and score high on IQ tests. Asperger’s work was re-engaged in the 1960s by researcher Lorna Wing, and a diagnostic binary arose between “Asperger’s Syndrome” and the general category of autism.
As detailed in my book, in the 1970s and 1980s Ole Ivor Lovaas founded modern ABA for autism. In the era of de-institutionalization, when large residential institutions were shutting down, Lovaas convinced parents that if they did not accept his Skinneristic method, their children would be placed (back) in residential institutions.
But Lovaas’ methods didn’t meaningfully diverge from the behaviourist strategies used in the institutions; he merely moved them to an outpatient setting.
Around the same time, the “biomedical “movement was taking off. In 1964, psychologist Bernard Rimland had broken away from the belief that autism was a product of parenting styles; he posited a “biomedical” cause for autism. Over the years, Rimland described and endorsed unproven autism treatments such as secretin and chelation therapy, and stated that vaccines could be to blame for autism.[2]
As John J. Pitney points out in his book The Politics of Autism, Rimland’s movement reflected a broader panic about an “epidemic” of autism.[3] It may be, too, that Rimland’s ideas appealed to parents because the biomedical movement finally placed the blame for autism on something besides themselves.
Fears of an autism epidemic were amplified in the early 2000s when the DSM began to include multiple diagnoses and sub-categories of autism, including Asperger’s within the singular diagnosis (Pitney, 48). This broadening of the diagnostic criteria is one reason that there was a rapid increase in autism diagnoses in the early 2000s—the very time during which the “autism epidemic” and vaccine hype took hold in our culture.
It was, as historian Steve Silberman put it, “the perfect storm” for panic about autism.
Enter Autism Speaks
Autism Speaks, founded in 2005, adopted a melange of pseudoscientific ideas (co-funding tens of millions in research on whether there was a link between childhood vaccines and autism) as well as embracing the cause of ABA.
Autism Speaks’ message traveled far, due in large part to the unique media access their leadership has had. Autism Speaks’ co-founder, Bob Wright, was a Vice President at NBC and had national media exposure at his fingertips. Soon, every story to do with Autism seemed to be about Autism Speaks—and there was also a lot more coverage of autism.(Please see my first and second e-books for more on the history.)
With all that clout, Autism Speaks was able to get a seat at the table in every US statehouse and achieve an insurance mandate for ABA in all 50 states, in just a few years.
The rise of ABA insurance mandates
As of 2019, ABA was either directly state-funded—or insurance companies were mandated to cover it—in all 50 US states and the District of Columbia, as well as in every province and territory of Canada. (The exception is self-funded plans in the private sector, which are not state-regulated).
This scenario was the culmination of eight years of lobbying by the ABA profession, with the support of Autism Speaks, who has relationships with ABA centers and lobby groups. What makes this especially remarkable is that in some states, ABA is the only publicly-funded (or insurance-mandated) autism therapy.
As autistic historian Eve Reiland documents, Autism Speaks lobbied state legislatures under the banner of donor campaigns such as “Autism Votes”. Autism Speaks’ lobbying team—whose annual expenditures of $112,000 in 2005 grew to $500,000 by 2013[4]— achieved its first victory with the Combat Autism Act in 2006. According to Sam Crane of the Autistic Self Advocacy Network (ASAN), the Act focused on federal funding for “research on cure, causation, and early intervention (including ABA).”[5]
During Autism Speaks’ campaign for insurance mandates for autism therapy, the charity specified that it advocated for insurance mandates covering only ABA. . According to Autism Speaks’ 2017 lobbying materials: “ABA [is] the centerpiece of a legislative mandate’s benefits, has been established repeatedly.” It called for “autism insurance mandates that specifically require private insurance companies to provide coverage of these [ABA] therapies, thus creating a public-private partnership for the provision of care.”[6] (emphasis added.)
Crucially, much of the states’ legislation prohibited caps on services, empowering ABA providers to charge insurance carriers for as much as they wanted, for as many ABA hours as they wanted, without limits. As an Autism Speaks press release stated in 2019, when Tennessee became the 50th state to mandate coverage:
“In addition to clarifying that ABA must be a covered service in all fully insured plans, we believe this [legislation] will prohibit plans from imposing restrictions on the number of treatment hours that currently exists in some Tennessee plans.”
In fighting for ABA insurance mandates, Autism Speaks (US) focused on the claim that, in their words, “the cost of autism is borne by everyone” (18). asserting that if policymakers didn’t invest in early ABA, costs of care would rise as the child grew up, citing “lack of productivity” and other costs to the taxpayer. The argument can be summed up by these joint statements from Cure Autism Now and Autism Speaks in 2017:
“By improving outcomes for children with autism, mandated private insurance coverage will …actually result in an overall cost savings in the long-run. (20).”
Meanwhile, providers of other forms of autism therapy were largely shut out of insurance mandates. In Ontario between 2003 and 2019, for example, families had to pay full cost for speech language therapy and occupational therapy, but ABA was covered by universal health care.
To complicate matters, private equity firms began scooping up autism therapy clinics and “smart” sizing practices by allowing junior practitioners who sometimes only had 8 hours of training to treat children. As well, AI and even robots now take the place of therapists in some settings. These changes further diminished an already shoddy practice, and threatened the financial stability of many BCBA-based practices. (See my book for a deep dive into all this.)
Parents demand better. But if not ABA-then what?
In Canada in 2019, advocates (including myself) contributed to a break in the ABA funding monopoly. The provincial government, which handles our public health care system, made a big change, allowing for other forms of therapy to be covered, so families could (finally) choose them. And they did, with more interest—and dollars— directed towards non-ABA approaches.
It was one of the first moments of destabilizing the “gold standard” myth, and it was led by autistic people and parents. (Please see my book for a behind-the-scenes look at this shift in Canada.)
Since ABA is not really the gold standard of care, what is? Speech therapy and occupational therapy, as well as AAC access, are clearly evidence-based and extremely helpful. But there’s also another aspect of care, one that isn’t measured in peer-reviewed publications: Inclusion.
To understand the impact of inclusion on quality of life, let’s go back to Kanner’s first patient, Donald Triplett. After a period of institutionalization, Triplett’s parents went against the grain and brought him home following his autism diagnosis at age three. His mother advocated strongly for him to attend school with his non-autistic peers and the school allowed it.
Based on documentary footage, Triplett had support needs throughout his life, but after graduating high school he was not shunted into a group home or sheltered workshop like most of his autistic peers. Instead, he went to work at his family’s small business, a local bank.
Documentary footage shows that he remained a distinctly autistic and highly unique individual until his death in 2023. By all accounts, he was accepted and appreciated within the small community that had known him all his life.
Donald Triplett was included.
We learn from the Triplett family’s experience, more than 80 years ago, that it’s always been possible to honour and include our children, in spite of the institutional forces that seek to contain them (and us).
Like the Tripletts, families across North America today are saying no to the ABA model—despite the funding mandates—and doing things differently. For more on this, please see Part 5 of this series (or read my book). For Part 4, we’ll dive a bit more into the world of Lovaas himself, and his ABA-focused gay conversion therapy practice.