As Chair of the Campaign Against Phony Autism Cures, I’m often asked whether a various type of autism therapy “works.” I answer with my own question: Is it kind?
In Let Me Be Me, the new documentary directed by Dan Crane and Katie Tabor, Annie Westfahl laments the long hours her younger brother Kyle spent in “the room,” receiving Son-Rise autism therapy as a young child in the 1990s. “My parents had Kyle working with these therapists to teach him how to make friends and tell stories and all this stuff,” she said. “And we’re like ‘he’s not going to learn how to make friends in a room with an adult. Full stop.’”
Annie and her brother Jake weren’t the only ones questioning the amount of time Kyle had to spend in the room. So was Kyle. “Those volunteers were on me all the time, [saying] ‘talk, communicate…look me in the eye.’” To enforce eye contact, Son-Rise therapists put mirrors on the walls. If Kyle was looking away, the volunteer would try to make eye contact with him in the mirror. The pressure took a toll on young Kyle, who is shown in archival footage asking to get out of the room, only to be told no.
“In the room, I felt like I was missing out on a lot,” he said. “It got to the point where I’d want to hide and be invisible and shut it all off.”
I was often uncomfortable watching the film’s therapy room scenes—which includes a Son-Rise therapist following Kyle around, staring at him and asking him to look at her. It made me wonder: Why do so many therapies focus on putting autistic kids in rooms and “working on” them? Meanwhile in the film, Kyle’s parents seemed gentle, open, and ready to connect with their son. So I also wondered: even though the Son-Rise therapists take credit for Kyle’s successes, maybe he’s done well because of his family’s kindness…in spite of the therapy, not because of it.
And then I thought: Maybe that’s true for a lot of families.
Since the 1960s, many autism service providers have embraced the idea that intensive early intervention—usually 20-40 hours per week to train “behaviors”—is the ideal standard of care for autistic children. The concept of intensive interventions was popularised by Ole Ivor Lovaas, a provider of Applied Behaviour Analysis (ABA). Lovaas claimed his method was the only choice for parents other than placing their children in institutions.
To Lovaas’s critics, however, ABA did little more than relocate the strategies of the institution into an outpatient setting. Lovaas, who referred to autistic children as “monsters” and advocated electric shock torture as among the acceptable forms of aversive to change their behavior. Sadly, the latter approach is still used by the Judge Rotenberg Center, an ABA-based center in Massachusetts.
Lovaas’s idea that autistic people needed to be molded or constructed—what he called “building a person”—still motivates many autism therapies, which focus on rewarding specific behaviors, like eye contact, and extinguishing others, like hand flapping. But the popularity of the intensive early intervention model is surprising, considering there is no robust evidence to support it.
One of the first major reviews of intensive early interventions was a 2018 Cochrane Review meta-analysis, which found their “overall quality of evidence as ‘low’ or ‘very low’.” A year later, TRICARE, an insurer of more than 1.4 million Americans, reported very low evidence for ABA, listing negative outcomes as well. In 2020, Project AIM reviewed 150 studies between 1970 and 2018, finding that “there were too few high-quality studies” to assess whether intensive early interventions were effective. The same year, a team led by Andrew Whitehouse, a professor of autism research at the University of Western Australia in Perth, confirmed that few autism therapies are based on rigorous evidence.
For his efforts, Whitehorse was threatened with lawsuits from some autism therapists; still others filed complaints with his employer and threatened his family. “It’s so absurd that just a true and faithful reading of science leads to this,” Whitehorse told Spectrum Magazine in April 2022. “It’s an untold story.”
Autism is a multi-billion dollar industry–and in the US, that market is dominated by ABA. Following an intensive lobbying campaign by the ABA industry (aided by Autism Speaks), all 50 US states and every Canadian province now require insurers to cover ABA, which can range from $20,000 to $80,000 per year. In some jurisdictions (such as Ontario from 2003-2019) ABA lobbyists were even able to convince policymakers to de-fund essential services like speech and occupational therapy, in favor of more dollars for ABA. As Julie Roberts of the Therapist Neurodiversity Collective told me, speech therapists in some states “often cannot get insurance funding, yet ABA clinics are getting 20-40 hours a week approved.”
Son-Rise, which can cost anywhere from $5,000 to $50,000 and is also vying for public funding, markets itself as different from ABA through several tactics. First are the claims that Son-Rise is a “miracle” that can make people “formerly autistic,” “recovered,” and “cured”—claims that ran afoul of the UK Advertising Standards Authority in 2009. Second is the claim that Son-Rise is more gentle than ABA. This has attracted many well-intentioned parents who, in my view, can be too quick to give the program credit for their own positive contributions to their child’s quality of life. Son-Rise also ran a series of YouTube videos against ABA, raising the ire of the Association for Science in Autism Treatment (a professional association that endorses ABA), who wrote a public letter demanding Son-Rise remove the videos.
As Chair of the Campaign Against Phony Autism Cures, when I’m asked to assess an autism therapy I always start with some basic questions. First, is it kind? Does it allow the child time to enjoy childhood? Does the therapist understand that there’s more than one way to communicate? Is the child’s right to consent being respected? While there are some amazing approaches that fit these qualifications—and at least one that actually feels a bit like a miracle (AAC)—they unfortunately don’t have the same persuasive power as the big lobby groups, so most aren’t even under consideration for public funding.
As a result, many families are caught between a mountain of scientific-seeming white papers and facile promises of a cure, doing their best with the information and resources available to them.
Enter the neurodiversity movement, working to educate policymakers, schools and the public on what an inclusive, ethical standard of autism care could look like. Meaningful change involves a lot more than tweaking existing programs; it requires a paradigm shift. But it’s one that is informed by a basic truth: inclusion doesn’t start at some magic moment after therapists isolate and “fix” the child. It starts now. It is long past time to fling open the doors of the therapy room, and let the sun shine in.
