Originally published inThe Nation on April 2, 2021
Today, April 2—Autism Awareness Day—let’s unfix our gaze from persons with the disorder. Instead let’s look in the mirror, and reflect on the systems we have made to serve and surround them. How have we allowed autism to turn into a profit generator?
In a flurry of legislative acts passed between 2010 and 2015, Massachusetts, where I live, became the twenty-second state to mandate insurance coverage of Applied Behavior Analysis (ABA) as a behavioral health benefit for autism. The state’s market for ABA services has been booming ever since.
ABA is now the default standard for treating autism across a range of settings from school to clinic to home. (The autistic child of a family without the money to pay out of pocket will receive nothing but ABA in Massachusetts.) The theory is that surrounding the child with a matrix of rewards and punishments reduces or “extinguishes” behaviors—hand-flapping, spinning, jumping, humming—that interrupt learning and socialization. ABA modifies the child’s response to the environment and opens the door to allied modalities, like occupational and speech therapy.
Does this sound like a version of what parents and teachers do all the time? Not so fast. “Treatment must be implemented and supervised by professionals specifically trained in Applied Behavior Analysis,” because ABA derives from a “natural science of behavior.” That’s from a promotional video by the Massachusetts Association for Applied Behavior Analysis. A giant photograph of Harvard psychologist B.F. Skinner, founder of the theory of behaviorism and patron saint of ABA, is visible in the background. The current edition of Applied Behavior Analysis, the textbook used in licensing examinations, contains a glossary of 500 technical terms elaborating the science. A “behavior plan” will record the minutest data-point and represent the child’s progress on pixelated curves and spikes in graphs and charts. Counting produces a feeling of proficiency in the clinician, and a comforting illusion of control in the parent or teacher. Science restores the fable that life is the result of choices, or what ABA calls “preference assessments.” In a culture of myth and misinformation about autism, ABA claims to be the only credibly “evidence-based” treatment.
The cooing promotional video turns out to feature paid professional actors, unaffected by autism, but ABA’s sales pitch has met its buyer in Massachusetts. In the last decade, Boston Public Schools has doubled the number of behaviorists on staff and now offers ABA as the primary service model for autism in all 125 of its schools. Licensed “behavior analysts” have tripled in number since the insurance reforms. (“Registered behavior technicians” have increased ten-fold.) The state’s mandate set forth exceedingly comprehensive coverage requirements for behavioral health therapy. Insurers must pay for every part of ABA’s “intervention,” from the performance of individual assessments to the interpretation of the data, the development of treatment plans, the supervision of the programming, and the training of technicians. Unlike some other states, the Massachusetts mandate set no age or dollar limits on billing.
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. Does ABA work? This obvious and necessary question begs another: In relation to what? Given that there is no equivalent alternative, the state does not apply any independent test to compare longitudinal data across time, circumstance, and population. Nor does Massachusetts keep tabs on the ownership structure of the agencies providing treatment. The state’s regulations are neutral, permitting autism schools and ABA service providers to organize either as nonprofits or as profit-seeking corporations.
The private equity industry is now making a play for this lucrative market. Blackstone acquired the Center for Autism and Related Disorders for a reported $700 million in 2018. The next year, Rothschild acquired New England ABA. Civitas Solutions, LEARN Behavioral, and Autism Learning Partners have been operating in Massachusetts as subsidiaries of other private equity firms since 2017. How have these acquisitions influenced the quality of clinical care? How many more agencies are courting investments?
We may learn the answers only after it is too late to refine the questions. Carolyn Kain, the Executive Director of the Massachusetts Autism Commission, told me that “some discussion” has alighted on the issue. The Autism Commission is charged by statute to make policy recommendations in this area. “To be honest with you,” Ms. Kain replied to my inquiry, “I don’t have a lot of experience, information, or knowledge about private equity firms purchasing autism organizations. It was something that was raised, but there hasn’t been any further examination.” The trend has not attracted interest from researchers either. A 2019 editorial on “Private Equity Investment in Behavioral Health Treatment Centers” in JAMA Psychiatry, a journal of the American Medical Association, found “no peer-reviewed literature” on this subject. A handful of articles and papers report that agencies acquired by private equity employ under-trained, unlicensed therapists and engage in serial abuse. Those impressions appear to comprise the extent of disinterested knowledge.
In the ABA field itself, the private equity prospect evokes stronger feelings. I spoke with Vincent Strully, founder and president of the nonprofit New England Center for Children (NECC), a leading ABA agency provider. With an annual operating budget north of $100 million, NECC’s services include early intervention, day schooling, residential treatment, and professional training. NECC operates 65 “partner classrooms” in New England’s public schools, where ABA is the exclusive service model. For all these reasons, private equity has been circling NECC for years. “It’s running wild,” Strully laments of the private equity “craze.” Rather than joining established agencies, he told me, autism entrepreneurs in Massachusetts are striking out on their own, reaching $10 million in annual revenue, and then “recapitalizing” their organizations for venture capital’s bigger bucks. The investors are expecting 15 to 20 percent return in five to eight years. “My advice to everyone involved is: ‘Don’t do it,’” Strully opined. “I think inevitably it is incompatible with quality service delivery. I think it is a mistake.” Strully declines to take what he regards as a radical leap. He foresees the current boom will crash when insurers balk and venture capitalists recalculate and realize they have overpaid.
“It’s astounding to me that you can become a multi-millionaire behaviorist.” That is Dr. Paul A. Dores, psychologist and behavior analyst in practice for 50 years, answering my further query. Dores worked as a behaviorist for many years in Massachusetts, concerning himself with ethics, before moving his practice to California. He points an accusing finger at a misalignment between the mechanisms of payment and treatment. “In the autism field,” he told me, “the people who are paying the money are separated from the people evaluating the results, and the ones connected to the results don’t always know good results from bad results. And so the feedback loop that would normally tell you, ‘if you are bad at what you do, you should be out of business’—that’s broken. There’s not enough accountability, and there’s more work than there are people to do it, and as a result we have a lot of really bad behavior analysis that’s going on while the people doing it are getting rich.” Dores sprinkled phrases such as “honey pot” and “gold rush” into our conversation. From his perspective, “it’s become the case that the single most reliable way to make money in the human services field beyond being a physician is to work in autism.”
File that assertion under unintended consequences. In the 1970s, when Strully and Dores started out, Massachusetts embarked on a social policy that eventually emptied most of its state hospitals and schools of persons with autism and introduced a phalanx of agency providers. No such publicly financed, proprietary enterprises had existed in the history of American disability.
The opportunity did not mark a radical break in methods of population management. The state institutions had employed “habit training” within their confines. Skinner and his colleagues had worked in the state hospitals. But the 1970s did spur a certain refinement of his behaviorism. What the culture had learned to call “behavior modification” acquired the fancier, more professional moniker of “Applied Behavior Analysis.” Segmentation in the diagnostic market supplied the demand. “Autism” had been recognized as a rare condition in a small group of children since Leo Kanner published his landmark 1943 paper, “Autistic Disturbances of Affective Contact.” Most clinicians and researchers in the 1970s still considered it a subordinate element of “childhood schizophrenia.” In a scramble to attain jurisdiction and prescribe treatment, behaviorists fought off the megavitamin cures of the naturopaths, dismissed the guerrilla exorcisms of the spiritual warriors, and rejected psychiatry’s arsenal of sedatives, hypnotics, and restraints. The definition of autism as an independent disorder, marked not by mental illness but by an observable set of behaviors, made its debut in the Diagnostic and Statistical Manual-III in 1980. Along with deficits in language development, the DSM-III identified a “pervasive lack of responsiveness to other people” and “bizarre responses to various aspects of the environment” as symptoms. Subsequent editions polished the language while leaving the billable paradox in place. Autism is experienced cognitively and felt existentially but treated behaviorally—from the outside in, as it were.
Like Skinner then, ABA’s leaders now presiding over a radical expansion of their field do not regard it as part of the psychology profession. Instead, ABA describes itself as behavioral engineering—a tool in the management of captive species that works best in laboratories, zoos, marine parks, primate sanctuaries, prisons, public schools, and the U.S. military. ABA is a social control paradigm, which may explain its potent appeal to governments. Strully’s New England Center for Children derives approximately three-quarters of its annual profit from the Persian Gulf monarchies where it has operated since 2007. The Association for Behavior Analysis International seeks the favor of government officials in China and Russia, selling ABA as an educational technology for any occasion, the consensus choice for achieving consensus.
An ABA signature “intervention” promises to turn any “problem” behavior into an “adaptive” one. Problem for whom? Adaptive to what? ABA does not offer independent arguments for the immanent social values it manipulates on behalf of the authorities governing the world of the child. A clinician may compel an autistic boy to make eye contact, for example, but cannot say why making eye contact is a value worth pursuing from his perspective. The idea of the boy’s personal growth taking place through a dialectic of conflict between him and his school, or between him and the parents, is ruled inadmissible. The clinician smuggles the interests of institutions into allegedly neutral techniques, disguising social obligations as moral imperatives—and moral imperatives as scientific truths.
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. Accelerating rates of autism diagnoses—one in every 54 eight-year-old children is diagnosed with autism, according to the Centers for Disease Control and Prevention last year—coupled with unlimited government money stoke demand for services. Payments issue directly from government coffers or indirectly from mandated third-party payers. Either way, they amount to a timely and stable transfer of wealth from public to private auspices. With no single provider dominating billings, and the pandemic pushing smaller agencies to the brink, the autism industry is ripe for consolidation.
Who is paying attention? The Massachusetts state legislature has not undertaken a comprehensive review of its system of disability service provision since 1997. The technocrats in Governor Charlie Baker’s administration had no plan in place to meet the pandemic. As the fallout continues, evidence of private equity’s baleful influence in allied human services should persuade the state’s legislature and administration to investigate. A hearing last week of a Ways and Means oversight committee in the U.S. House of Representatives alleged an inverse relationship between quality of care in long-term care facilities and the ownership structures fastened on them by private equity investors. An economic analysis released in February estimated 20,000 additional lives lost over a 12-year period as the direct result of private equity’s business tactics in nursing homes.
Mortality differentials in Massachusetts are alarming already. A white person with an intellectual disability in Massachusetts lives, on average, 12 fewer years than a white person without an intellectual disability in the state. A Hispanic person with an intellectual disability in Massachusetts lives 26 fewer years than a white person without an intellectual disability in the state.
A truly comprehensive review should strive for innovation and competition in the treatment of autistic persons. The cozy affinity between ABA and private equity is too apt to let fester and grow.