Part 2 of ABA: The troubling history & legacy of autism’s most common therapy
Lobbying, insurance mandates & private equity
Photo courtesy of Autistic & Neurodivergent Liberation Front of Ottawa
In Part 1 of this series on ABA’s history, legacy and resistence to it, I covered the father of modern ABA, Ole Ivor Lovaas. I documented Lovaas’ concurrent gay conversion program that ran on the same principles as ABA—and the punitive aspects of ABA which have remained intact in ABA settings today including shock torture, isolation rooms, restraint and psychological abuse.
Families and schools need to be de-sensitized to buy into programs like these. So, what is the marketing for ABA—how does it work? In this section, I describe how ABA marketing starts by medicalizing its practices, claiming they’re “the only evidence based practice” and entrenching their ideology in policy, with insurance companies (US) and public insurance (Canada) mandated to fund ABA—often at the expense of funding other therapies.
“Don’t Sell-Prescribe”
Much like Lovaas piggybacked off the de-institutionalization movement to portray ABA as the only way to free children of life in an institution, some promoters today use a similar argument. In 2020, Reece Epstein, CEO of Reputation Elevation, a digital marketing agency that specializes in helping BCBAs enroll more clients, calls the strategy The Doctor Frame. (“Don’t Sell: Prescribe,” he wrote.) Reece’s company, Reputation Elevation, which claimed to have helped ABA centre clients earn “over $900,000 in revenue in just six months with Facebook Ads” advocates The Doctor Frame “by taking the position of a trusted authority.”
“Your next step is to take the objection and explain why their very objection is precisely the reason they should enroll with you. Here’s how that works:
“Parent: I just can’t afford these copays.
“BCBA: What we found is that saving money is exactly the reason why our clients choose us. That’s because by getting your child the services he/she needs right now, you will actually save many tens or even hundreds of thousands of dollars. That’s because if you don’t get your child the help he needs now, he will need a lot more help later. And he may not be able to get a good job.[1]”
“See how that works? The parent’s objection is rendered indefensible because money is actually a reason to use your services.”
By using The Doctor Frame, ABA marketers can work towards two goals: to cuts out competition while justifying the high costs and commitment involved in using the service.
The industry’s use of the term early intervention creates a powerful association-- intervention is used commonly within medicine for life-saving surgeries, like an appendectomy or placement of a heart stent. By referring to behaviourism as an “early intervention,” marketers are portraying behaviourist operant condition as medically necessary, thus worthy of insurance and public health funding.
“Life-saving therapy”
ABA marketing sometimes use more overt medical metaphors to describe ABA practices in order to portray them as “life-saving”. In one pro-ABA feature for the Toronto Star, Laurie Monsebraaten wrote of an autistic man that “ABA therapy saved his life.” When public funding for ABA was cut back in Ontario in 2018, a representative of the ABA lobby, Laurie McIntosh, compared ABA to kidney dialysis. Likewise in 2019, a representative from the province’s ABA lobby group ONTABA told a TV Ontario audience that denying ABA was akin to denying chemotherapy to a child with cancer.[2]
A 2022 CNN story also quoted an ABA representative comparing ABA with chemotherapy. “You would never allow a kid with cancer to experience these waits,” Dr. Kristin Sohl told CNN (emphasis added).
While Dr. Sohl had mentioned her role on the American Academy of Pediatricians’ Autism Subcommittee, she neglected to mention her role as the founder of EchoAutism, an organization promoting ABA by referring clients to BCBAs (listed under the category “early interventionists”), running ABA-based seminars and sharing ABA-based resources.
Insurance mandates and the role of Autism Speaks
While some parents have followed Lovaas’ claim that ABA can “recover” children from autism, or if they believe, as McIntosh claimed, that ABA is as crucial as dialysis, there are many more families who simply use ABA because it is the only funded option available to them.
One of those parents was History professor and journalist John Summers. In his March 2021 expose in The Nation about the ABA industry, Summers critiques one the key talking point of pro-ABA policymakers: that it’s “the only way” to help children:
“Treating a spectrum disorder with a uniform model is unique as well as paradoxical. In no other area of child development does government prescribe and mandate access to one—and only one—packaged therapy.”
To Summers, the idea of one standard of care, developed half a century ago, runs contrary to the realities of contemporary autistic life.
“Why is my son getting a service model that is based on the whole philosophy that was discredited 40 years ago?” he asked on my podcast. “It is really strange.”
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--and 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 industry, 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. There are no mandates for scientific therapies like Speech Language Pathology (SLP) and Occupational Therapy (OT), professions which are not organized into lobby groups.
While lobbying has brought the industry success, it’s costly. According to Gina Green, the founder of the Association for Science in Autism Treatment (a group that promotes ABA as the only effective autism treatment), efforts towards mandating provider licensing, which some view as the next step, will require “a bag of money” to pay lobbying firms, and:
“a second bag of money…in the form of checks made out to legislators’ campaign organizations. Most legislators will greet lobbying groups with larger smiles if they know they have supported their election efforts (quoted in Broderick, 181).”
Because they have lacked the lobbying capacity (and, presumably, the “bags of money”), providers of other forms of autism therapy (such as AAC supports, DIR Floortime and occupational therapy/life skills) have been largely shut out by both American and Canadian policymakers.
These service providers were also neglected by Autism Speaks in its role within the movement to get ABA mandates. During the charity’s campaign for insurance mandates, Autism Speaks specified that it advocated for insurance mandates covering only ABA.
According to its 2017 lobbying materials: “The efficacy of Applied Behavior Analysis (ABA), 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 therapies, thus creating a public-private partnership for the provision of care.”
Much of the states’ legislation also prohibited caps on services, empowering ABA providers to bill insurance carriers as much as they want, for as many ABA hours as they want, 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.”
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. Their assumption, that ABA creates more productive future workers, is not substantiated in any of their documents.
Yet policymakers seemed mostly persuaded even without the data. Their argument can be summed up by these joint statements from Cure Autism Now and Autism Speaks in 2017, arguing for mandated insurance coverage of ABA, without any caps for maximum billable hours.
“By improving outcomes for children with autism, mandated private insurance coverage will decrease the lifetime costs of treating and providing services and will actually result in an overall cost savings in the long-run. With every new child diagnosed with autism costing an estimated $3 million over his or her lifetime, the current practices are …not cost effective in the long run for states and their citizens (20).”
In the US and Canada, ABA lobbies successfully established funding mandates for ABA in state or provincial policy frameworks so that costs are absorbed by tax dollars or insurance payments. In Canada, lobbyists have convinced policymakers to designate ABA the dominant therapy for direct public funding through the single-payer system. In fact, between 2003 and 2019, occupational therapy and speech language therapy were completely de-funded in its largest province, Ontario. In the US, the industry and its proxies lobbied state governments to pass laws requiring private insurers to cover ABA (which, as of 2022, they all do).
As autistic historian Eve Reiland documents, Autism Speaks ran public pressure campaigns and 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), it focused on federal funding for “research on cure, causation, and early intervention (including ABA).”
ASAN: Disrupting the ABA and Autism Speaks monopoly
Crane pointed out that this resulted in a vastly disproportionate share of research funding going to those issues, instead of quality of life issues that could immediately improve the lives of autistic people. In 2018, for example, out of a nearly $400 million autism research budget, just $2 million (or 0.5 per cent) was spent on “community integration research” that could have enabled more autistic people to be included in mainstream classes and live in the community instead of institutions and group homes.
In 2014, ASAN was able to get some important changes to the legislation, including a name change (to the more compassionately-named "Autism CARES Act") and moderately increases in the presence and voice of autistic self-advocates on the Act’s committee. ASAN’s hashtag #StopCombatingMe drew attention to the dehumanizing nature of the original Bill’s title as well as the equity issues in how funding was appropriated.
To wit, most federal funding was going to big players in the industry. As of 2010, they reported, only 2 per cent of funding was allocated to “lifespan issues,” in other words the issues of daily living, health and accessibility that matter to autistic people.[5] Much of the rest was going to the ABA industry, diagnostic service companies and dubious research projects such as the search for “autism genes” that were generally unwanted by autistic people.
“I would say that Autism Speaks is still a huge player in reauthorizations of this bill,” Crane told me. “In addition, some more fringe, anti-vax groups are constantly pressuring congress to make it even worse and direct funding toward spurious ‘environmental’ research.”
Crane added that Autism Speaks does not directly receive research funding through CARE.[7] Rather, it seems the organization benefits from the relationships it builds with the ABA centres and researchers it supports via lobbying--and the passage of the law has increased Autism Speaks’ profile in the parent and service provider committee.
Private equity and business expansion
As noted, ABA coverage by insurers is now mandated in 50 US states and sometimes also covered by schools. Due to mandates, it has been predicted that there will be a more than a 20 per cent job growth rate for ABA professionals by 2029 (per the US Bureau of Labor Statistics).
According to research by Julie Roberts of the Therapist Neurodiversity Collective, there was a 1,942% increase in demand for ABA practitioners in America between 2010 and 2018. As of January 7, 2020, there were 37,859 Board Certified Behavior Analysts (BCBA), 4,044 Board Certified Assistant Behavior Analysts (BCABA), and 70,361 Registered Behavior Technicians (RBT) in the US.
According to the Behaviour Analyst Certification Board, a non-profit that operates as a certifying association, the annual number of ABA-provider certificates they are granting has increased by nearly 2000 per cent since 2011 (Broderick, 173). The Board states that between 1998 and 2011, it “certified 10,000 individuals,” but from 2012 to 2019 “this number has grown to more than 100,000 certificates” (cited in Broderick, 173).
As Broderick points out, this was possible in part because in 2014 the industry launched a new category of “Registered Behaviour Technician” (RBT) which requires just 40 hours of study to attain and is marketed via community colleges and online tutorials (much quicker and more affordable to attain than a 4-year certificate).
While 12 per cent of ABA professionals work in education, according to 2016 data from the Behaviour Analyst Certification Board, nearly 68 per cent work in the “autism sector,” such as ABA centres (Broderick, 29). Notably, the majority of ABA centres in the US are privately run. Data from a 2009 survey by the Association of Professional Behaviour Analysts (ABAI) showed that just 29 percent of ABA providers in the US work directly for government agencies; the rest for private companies (or their own companies).
The average BCBA salary (per 2021) is close to $70,000 per year, with top earners reporting salaries of over $100,000 per year. In contrast, BCABAs make an average of just under $50,000 per year or $24.31 per hour. RBTs make an average of $42,500 per year or $18.26 per hour. This is just a bit more than half of what BCBAs make, leaving the ABA centre pocketing the rest.
Because parents often do not know the difference between the accreditations, as Summers has documented, RBTs are allowed to take part in complex therapeutic processes, such as feeding therapy and even speech language therapy, neither of which they’re trained in—all done under the rhetorical umbrella of “behavioural therapy.” In the opinion of one former RBT, who quit the field and blogged about the problems with it, the training does not prepare or educate providers properly:
“I was hired off the street with no background in child development, no knowledge of autism or ABA, and no experience working with children, let alone autistic children. Every time I would question their methods or their reasoning, my questions would be answered with, ‘This is the only evidence-based treatment for autism. It’s the only way they can learn.’
“Against my intuition, I believed them. They’re the ones with college degrees. All I’ve got is a GED and a minimum wage job which I’m lucky to have.”
As it has expanded, the ABA industry has built relationships with private equity companies, as part of the larger trend of private equity involvement in institutionally-based health care systems.[8] Where private equity firms have consolidated ABA centres, profits increased when RCTs and other lower-wage employees were given preference. Families, without intricate knowledge of accreditation, didn’t know any better.
In 2019, the organizers of the Autism Investor Summit described the fact that “the [autism] industry lacks regulation and oversight” as an “opportunity” for investors and entrepreneurs. The Summit billed itself as:
“A unique opportunity for autism service providers and investors to meet in an intimate setting to discuss the autism services landscape and opportunities for investment.”
Baird Capital, a private equity company, had invested an undisclosed amount in Hopebridge, an Indianapolis-based ABA company back in 2017. Hopebridge had 17 offices at the time. Within a year, Hopebridge had nearly doubled in size, establishing 13 new ABA centres. Michael Bernstein, a Baird Capital partner who also became a Director at Hopebridge in 2018, told Disability Scoop that he was persuaded in part because of new state laws requiring insurance coverage for ABA.
Insurance mandates for ABA are enticing to private equity, which invests and makes the ABA industry stronger, building wealth and sustainability through these cycles. The Braff Group, a Pittsburgh health care mergers and acquisitions advisory firm, described autism services as the “hottest sub-segment” within the category of behavioral health and identified 14 private equity deals in 2017 alone. But what is the cost of this growth to public systems—and to the integrity of health care?
Summers became interested in the topic of private equity and autism service centres when he noticed that few of his son’s ABA providers in Massachusetts had been acquired by private equity groups. He told me, “This kind of sent a chill down my neck because I don’t typically associate private equity with human service and care.”
He observed the Center for Autism and Related Disorders (CARD) being acquired by Blackstone, a private equity company, for $700 million. “That’s a lot of money. And it’s a big group. Then it happened with a few of the other providers as well.”
A few other things were happening in Massachusetts at the same time. As Summers reports, in the past decade Boston Public Schools had doubled the number of behaviorists on its staff and began offering ABA as the primary service model for autism in all 125 of its schools. Licensed “behavior analysts” tripled in number and “Registered behavior technicians” increased tenfold following a state mandate that insurance companies provide comprehensive coverage for ABA.
In Massachusetts, insurers must pay for every part of ABA interventions and, as Summers notes, Massachusetts (unlike some other states) does not set an age limit on funding, nor a cost ceiling for families. Unsurprisingly, private equity firms are an increasingly strong presence in that market, as Summers reported in The Nation.
“No such publicly financed, proprietary enterprises had existed in the history of American disability.”
To Summers, the insurance reforms, combined with “created this situation where there’s an enormous amount of money that’s available and that what ought to have been a service model has turned into a financial model.” Marketers interested in creating an ABA centre need little or no experience in autism services. To start an agency, one need not be credentialed, one may only by an administrator of a start-up concept, hiring BCBAs, RBTs or even untrained professionals, in the many jurisdictions where there are no professional requirements or oversight of the profession.
“You reach 100 clients or so and generate revenues about $10 million a year and at that point you will begin to get solicitations from the [equity] companies, and there are companies now that have emerged in order to make this transition smoother. Now, of course also funded by private equity companies you can basically package your business and then flip it or – they call it recapitalize -- for bigger bucks.”
Summers points out that private equity “shares with ABA an instrumental approach to creative human activity, delivered through a strict model of rewards and punishments. A more purely financial logic also excites interest in the model, of course.” Smaller offices get absorbed by bigger companies, and big companies partner or sell out to private equity. In the absence of regulation, the market is particularly hot. As he told me:
“In Massachusetts, Registered Behaviour Technicians don’t need to be licensed. It’s possible to hire one BCBA and then hire a fleet of high schoolers with laptops and send them into homes.”
There are also no administrative mechanisms in place to assess the effectiveness of ABA programs in Massachusetts in terms of impact on kids or return-on-investment. In 2018, Summers called his insurance company to ask how they gauge whether ABA is an effective therapy, only to learn that there were also no mechanisms at the company to determine whether the programs worked. The only tracking systems in place were for adding up the billable hours.
“This is an especially hollow exercise,” Summers noted, “considering that there’s no competition with other providers because it is the one autism therapy that has been endorsed for the state’s insurance mandates.”
Dennis May, chief executive officer of Hopebridge, told Disability Scoop that growth in the ABA industry is in response to need. “Growth and expansion are very necessary,” said May, “because you have children who need these services so desperately and they’re not able to get them.”
But since Massachusetts doesn’t assess the programs, and the legislature has not undertaken a comprehensive review of disability service provisions since 1997, it begs the question: who decided that the services are the right services or whether they are needed at all, let alone assessing any risks?
Absorbing the competition
Multiple revenue streams are essential to the ABA industry’s dominance over other fields of therapy like OT and SLP. Unlike other autism therapies, which generally take place in a clinic setting during appointments of a couple hours, ABA centres are immersive institutions that enroll children all day. ABA practitioners also train public school educational assistants to use their system and, in some jurisdictions, they convince policymakers to mandate that only the ABA system can be used by educational assistants.
This is the case in Ontario, where Public Policy Memorandum 140 mandates that all educational assistants in Ontario classrooms practice ABA.
The industry has also been known to try to absorb the competition by backchanneling with professional associations. In the late aughts, the industry began to penetrate the field of speech language pathology (SLP) in the US, mainly by trying to build connections with the American Speech & Hearing Association (ASHA). A soft approach was evident in the 2006 book ABA for SLPs: Interprofessional Collaboration for Autism Support Teams, which was written mainly by ABA industry professionals and, according to Roberts, heavily promoted to ASHA.
In a slide presentation on creating “working relationships between BCBAs and SLPs”, BCBAs Kate Grandbois and Rebecca Giammatti identified as a challenge the fact that SLPs “perceive ABA as an industry, not a science,” offering advice on how to persuade SLPs that ABA is scientific.
ABA marketers also created the BCS-ASD (Board Certification in Autism Spectrum Disorders), a proposed ASHA “accreditation” program that combined ABA practices with SLP. It was officially approved by ASHA at its 2021 Convention, establishing a further foothold for BCBAs within the practice of ABA and giving ABA the appearance of being a legitimate form of SLP to many American consumers.
The BCS-ASD consortium, which included Lynn Koegel, a BCBA and her husband Robert Koegel (founding editor of Journal of Positive Behavior Interventions), quickly began pitching to school districts and other funders for dual-certified providers, thus making it more difficult for SLPs who did not have (or want to use) behaviourist methods to be placed in speech language centres at schools.
Roberts, a Texas-based licensed SPL (CCC-SLP) explained the potential financial ramifications of the BCS-ASD, “It could end with insurance companies across the board requiring speech-language pathologists [serving autistic students] to become board certified in autism in order to bill for services,” with the BCS-ASD model being the standard.
As Roberts points out, the deck has already been stacked against SLPs for some time.[10] “SLPs often cannot get insurance funding for therapy (private practice), yet ABA clinics are getting 20-40 hours a week approved,” she told me, noting that her SLP colleagues have been displaced by BCBAs and RBTs in duties such as feeding therapy and language therapy. “ABA providers don’t have qualifications” to do this, notes Roberts, but parents are misled to think they are qualified.
In another attempt to bring ABA into the field of speech language pathology, industry reps also pitched the establishment of a Special Interest Group in Applied Behavior Analysis in Speech-Language Pathology Practice to ASHA. But in January, 2022, this was defeated in a 0-15 unanimous vote by the ASHA Board of Directors.
I asked Roberts what she and her colleagues fear the most of all. She said their concern is that the profession of SLP will be subsumed by the ABA industry and become “obsolete within the next decade to 15 years. It's appalling and very scary.”
It is sometimes also hard to know whether an autism research publication or institution is independent or whether it’s a product of an ABA organization or interest. For example, as mentioned, the Association for Science in Autism Research, (ASAT)--which, based on its website, looks like a non-biased research institute-- is led by ABA practitioners.
ASAT lists just two therapies under “What Works”: both are ABA therapies.
“Pay Now or Pay Later”
Epstein’s argument--that without ABA interventions children will be violent, inarticulate and dependent on their parents for life--can frighten parents into investing. To policymakers, lobbyists give a slightly different spin. The “costs of autism” argument is leveraged, as we see throughout this SubStack, with various estimates of the long-term costs of caring for autistic people. ABA proponents have pitched around a lot of numbers, $3 million in a lifetime, for example, or $80,000 annually to guarantee a better return on investment for governments than other types of therapy.
But there is no evidence these numbers are right, nor that the results of ABA (compliance) meet the needs of the end users of services. Families and autistic individuals have been resisting ABA because it does not meet their needs. This points to a central tension in autism services, between compliance-based approaches and those that center quality of life for the autistic person.
While patient and family concerns may in part power a shift away from ABA, another force has been slowing down the funding for it: austerity. In my next section, I look at a case in point: Ontario.
This is part 2 of a 3-part series on the history and impact of ABA, the most popular autism therapy in the US and Canada. In the next section, I take an in-depth look at the marketing of ABA to parents, policymakers and insurers.
[1] Reece’s website also contains testimonials from satisfied BCBAs, with claims such as: “Over the course of six months, we helped the clinic go from approximately $250,000 in revenue per year to over $936,000 per year.”.
[2] A representative of the Ontario Association of Behaviour Analysts (ONTABA) made the chemotherapy claim on TVO’s The Agenda in February 2019, in a panel where I had been invited to represent of Autistics for Autistics, the local autistic-led advocacy group.
[3] For a critical look at the evidence around ABA, please see section 4 of this Substack.
[4] Pitney, 31.
[5] Figure cited in Pitney, 44 (figure 3.1)
[6] See my upcoming SubStack on MSSNG and genetic research.
[7] Email between Sam Crane and the author, February 17, 2021.
[8] A harrowing case of private equity acquisitions of services targeting disabled people is KKR’s $1.3 billion purchase of Bright Spring Health Services, one of the largest group home operators in the US, housing thousands of disabled people. According to a report in Buzzfeed by Pulitzer finalist Jason Leopold and colleagues, “Conditions grew so dire that some of the most vulnerable people in its care suffered and died.”
[10] Roberts described her first encounter with a BCBA in 2010, when parents of a client requested that their new ABA therapist attend an [SLP] session: “Every single communicative attempt this child made was tracked on a clicker, and reinforced with a ‘Scooby snack’ or punished by withholding it. …A few weeks later the child stopped speech therapy altogether because, as the mother stated, ‘the ABA provider could do it.’”