When a young child is diagnosed with autism spectrum disorder (ASD), professionals tell his parents to get him into treatment as soon as possible. Treatment can begin as early as two or three years old and is intended to improve the child’s mental and physical skills to ward off long-term learning, speech, and movement deficits. “The sooner a child gets help, the greater the chance for learning and progress,” says the National Institute for Health. “In fact, recent guidelines suggest starting an integrated developmental and behavioral intervention as soon as ASD is diagnosed or seriously suspected.”
The most widely used treatment for autism is a behavior-modification therapy called applied behavior analysis (ABA), which 64 percent of autistic children in the U.S. receive today. As an early intervention, it entails children spending as much as 40 hours a week with an ABA-certified therapist, who repetitiously walks them through and rewards them for completing basic activities like using the bathroom, getting dressed, or writing their name. As the child develops a command of basic skills, the amount of time spent in ABA therapy declines, though many continue to receive it at home, in a clinic, or at school.
While researchers, practitioners, and parents traditionally have backed the therapy, some autism advocates have not. They claim that ABA punishes autistic children for behaving in ways that do not harm the child or society. For instance, many autistic children engage in “stimming” behaviors, such as flapping hands or flicking fingers, which help them manage anxiety or sensory overload, and which ABA practitioners typically try to reduce or eliminate. These autism advocates claim that society should accommodate, rather than seek to extinguish, these behaviors.
The web is full of ABA horror stories. The mother of an autistic four-year-old, for example, secretly began filming her son’s ABA sessions after she found a red mark on his face, only to discover that the therapist had been forcefully grabbing his arm, pushing him down, and pulling his chair out from under him. One autistic teenager, mandated to attend ABA by court order, described himself as being belittled by therapists who assigned him activities well below his level, forced him to maintain eye contact for uncomfortably long periods, and accused him of “scripting” (repeating words from movies, TV, or other conversations) when he expressed difficulty with the activities assigned to him.
These are extreme cases, but even if ABA delivers positive benefits, many of those who experience it perceive it as abusive. One survey study of 243 autistic adults found that those who had undergone ABA were nearly twice as likely to meet the diagnostic criteria for PTSD. Another survey by an autism-advocacy blog found that of the 341 respondents who had experienced ABA, 72 percent did not support using it to treat autistic children. A qualitative study of seven autistic adults found that they overwhelmingly viewed the therapy as traumatic, unethical, and dehumanizing. While these results may only be generalizable to the high-functioning autistic population, who tend to be overrepresented in autism research, there is little reason to suspect that those who are lower functioning find ABA to be less distressing.
Parents, by contrast, have an extraordinarily positive view of ABA. A survey of Autism Parenting Magazine’s 160,000-plus subscribers showed that 94 percent of respondents with an autistic child who had undergone ABA believed that it had benefited their child and would recommend it to other caregivers. Multiple qualitative studies show that parents overwhelmingly support the therapy and believe that it has helped their children’s social, physical, and cognitive skills and improved their general quality of life. It’s understandable why parents would want to see their child making these gains, even if the process to do so was difficult.
Academics and practitioners historically have pointed to extensive scientific literature that, they claim, justifies the use of ABA. But in 2020, Andrew Whitehouse, a respected autism researcher, published a comprehensive review of the evidence for childhood autism interventions that raised questions about the quality of the evidence for autism treatments. Whitehouse and his coauthors evaluated 58 systematic reviews of autism interventions, which together contained 1,787 unique studies. Using a quality-appraisal checklist to evaluate the risk of bias for each review, they deemed 47 percent of the studies “low quality,” 41 percent “moderate quality,” and just 12 percent “high quality.” While the reviews, on balance, found that those who received behavioral interventions benefitted, the evidence underlying such findings was of low and moderate quality. Startlingly, Whitehouse found that only one of eight reviews of behavioral interventions discussed their potential harms or negative effects, though the one that did raise the issue reported no actual occurrences of such harms.
Soon after Whitehouse released his report, numerous clinicians, therapy providers, and professional organizations went after him. They complained to his employer about his research, threatened to sue him, and harassed his family members. Their desire to attack a scientist who exposed the shabbiness of this literature—rather than the generations of scientists who compiled a low-quality body of work—speaks to how little the field today is focused on successfully understanding autism. A whole credentialing apparatus—professional organizations, certification bodies, and college-degree programs—revolves around ABA. As long as parents and the public believe the therapy is scientific, the ABA apparatus can keep profiting.
So, are ABA’s benefits greater than its costs? Short answer: nobody knows. Few studies evaluate autistic children’s negative experiences of the therapy, making it hard to conduct an adequate cost-benefit analysis. Those studies that report children making long-term gains in functioning are of middling scientific quality, casting doubt on the therapy’s status as an authoritative treatment. Practitioners and parents swear by the therapy, while many of those who receive it don’t support its use. It’s plausible that ABA is helpful in some cases and harmful in others, but without a commitment to the scientific process and rigorous policy evaluation, we will never be sure whether, and for whom, the therapy works.
The case of ABA is by no means singular. Today, countless unsubstantiated treatments and programs are being advocated by academics and administered by professionals. At best, they may offer therapeutic benefits scientists have yet to prove. At worst, they are harming society’s most vulnerable. To protect them, we must hold those involved in the creation and propagation of such treatments to a higher standard of methodological rigor, insist on greater transparency and humility from researchers, and guard against the urge to adopt new approaches to old problems without high-quality evidence.
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This article was originally published by a www.city-journal.org . Read the Original article here. .