Kathryn Parsons, a 51-year-old digital marketing professional in Stamford, Connecticut struggled to hold down a job because employers didn’t understand her autistic behaviors. She struggled to adapt, which is a common problem for autistic people, so like many others on the spectrum, Parsons tried applied behavior analysis (ABA).
A controversial but widely-used form of autism treatment, Parsons believed ABA could be an ideal solution, and at first she thought it was effective. ABA helped her mask some of the autistic traits that got her fired — but this came with a steep price.
“It may have seemed effective in the short term, but it left me without healthy coping strategies or the tools to embrace my neurodiversity,” Parsons said. “I was essentially taught to suppress who I was and perform as someone I wasn’t. This constant masking eroded my self-esteem, led to social anxiety, and caused depression, as I felt I could never be myself in any setting. Masking also made it nearly impossible to form authentic bonds with coworkers, and eventually, the pressure of maintaining that façade led to severe burnout.”
The COVID-19 pandemic gave Parsons a welcome relief from masking, but once employees were required to return to the office, she found it even more difficult to cope with masking her autistic traits.
“I couldn't hide behind the screen anymore and had a severe, public meltdown in front of my coworkers,” Parsons said. “That experience forced me to confront the harm ABA had done and seek out more neuro-affirming therapies. I learned to be mindful of my needs, and advocate for myself.”
The phrase “conversion therapy” has a stigma associated with it, and understandably so. Whether targeted against gay or transgender individuals or anyone else deemed “atypical,” conversion therapies are notorious for not only being pseudoscientific, but spreading prejudice and inflicting harm in the process.
"Instead of teaching me, it seemed like ways to squash my innate behaviors rather than allowing them to evolve on their own."
In fact, many activists compare ABA to abusive pseudoscience like gay conversion therapy. In spite of this, the practice is growing in the United States. Between 2010 and 2018 there was a 1,942% increase in demand for people with training in ABA, with the industry growing every year. With such an explosion in the field, one would hope that the popularity is accompanied by reliable science. Instead, there’s a genuine risk of conflicts of interest in the field.
In 2021, Kristen Bottema-Beutel, a professor of special education at Boston College who focuses on autism, coauthored a systematic review of 180 studies found that almost every author who worked as a clinical or training ABA consultant “either omitted to declare them as COIs in their published reports (i.e., there was no COI statement provided), or falsely claimed that the authors held no COIs.”
Scientists are governed by an ethical code when conducting research that emphasizes transparency about financial interests. If any scientist has a literal investment in projects about which they are studying, they are ethically required to disclose this conflict of interest (COI) to the public. Not all such research is unethical or inaccurate — Big Pharma funds a lot of legitimate biomedical research, for example — but it should be disclosed to the public and avoided when possible.
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On some occasions, researchers linked or cited their published research on websites advertising their consultancy work. “As such, these individuals are using their research to market their clinical expertise to prospective clients, but still claiming that their research is free of COIs,” the authors concluded.
“My colleagues and I examined the extent to which adverse events were monitored and reported in all intervention research for autistic children up to age eight, and we found that this practice was very, very rare, including among ABA researchers,” Bottema-Beutel told Salon. “We repeated the same analysis with intervention research for transition age autistic youth ages 14 to 22, and had a similar finding — adverse event monitoring and reporting was very rare, and most of this research with autistic children in this age group used behavioral intervention approaches.”
Certainly there is no shortage of professionals who advocate for ABA. Purdue University found job growth for those with ABA certification has exploded by 5,800% between 2010 and 2022, and the ABA therapy market is expected to expand by 12% annually between 2021 and 2028. For aspiring health care professionals, ABA is a burgeoning industry. But does it benefit patients?
Laura K. Anderson, the associate director of the University of Northern Colorado’s GOAL Inclusive Higher Education Program, has written about the experiences of autistic people who experienced ABA. In theory, ABA encourages autistic people to better adapt in a world of neurotypicals (people who are not autistic) by providing positive reinforcement. In practice, critics argue that it simply encourages the unhealthy trait of masking one’s autism. It also encourages clinicians, intentionally or otherwise, to abuse autistic people for displaying traits that are hardwired into their neurology.
"I feel ABA is deeply flawed."
“I received ABA therapy when I was younger, and instead of teaching me, it seemed like ways to squash my innate behaviors rather than allowing them to evolve on their own,” James Emerson, a 34-year-old from Huntington, NY, told Salon. “For example, getting into trouble for stimming only added to my anxiety and self-doubt. Conforming to the acceptable norms kept me isolated and misunderstood.”
Emerson recalled an occasion when he was forced to sit in silence for a long time during a session, which he found anguishing.
“More often than not, the demand to comply with the therapist's needs overshadowed my needs and made it hard for me to be genuine,” Emerson explained. “Though I did learn some skills in the area of communication, emotionally, it took a great toll: I had nightmares and a general sense of self-inadequacy that lasted well after the therapy had ended.”
Now Parsons directly asks for help in identifying and removing sensory triggers, scheduling pauses between her meetings and using closed captions to help with her auditory processing disability. These approaches were more than effective in the short-term; they yielded long-term results, and empowered Parsons in the process.
“I feel ABA is deeply flawed,” Parsons concluded. “It pressures autistic individuals to adjust their behaviors to fit societal expectations, rather than teaching them how to navigate different communication styles and socialize authentically. It prioritizes the wants of others rather than helping them thrive in their own skin.”
While the scientific papers may conceal this fact, others who interact with autistic people can confirm it is true.
“Lots of advocacy organizations run by autistic individuals (such as the Autistic Self-Advocacy Network) denounce ABA as harmful,” Anderson said. “There are entire websites dedicated to why ABA is bad and harmful, as well.”
For every success story, there seems to be a counter-story; for every autistic person who became well-adjusted, there are others who feel stymied from trauma.
“Non-academic, first-person sources are important, since ABA researchers are neglecting to monitor and report these concerns in their research studies,” Bottema-Beutel said. “We know that, according to ABA research that tries to eliminate ‘problem behavior,’ many of the autistic children in these studies experience worsening behavior during or after the intervention is over (such as self-harm).”
Even though ABA researchers do not classify these as “adverse events,” Bottema-Beutel believes they should be. For reasons like these ones, Anderson hopes parents of autistic children will seek other options.
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“The most important things for parents are finding other therapies that will help their child,” Anderson said. “Speech-language therapy is a huge area that parents should consider, to provide their child with a reliable method of communication that can be understood by the parents. Other therapies might include mental health therapy or occupational therapy.” She added that on an individual level she is "a huge proponent of [occupational therapy] because occupational therapists are great at helping figure out a “sensory diet” for autistic individuals to help them meet their sensory needs."
Bottema-Beutel adds that they should not regard ABA as the “gold standard,” a claim that is made based on the supposed solidity of the underlying scientific research.
“Parents should be aware that much of the research backing ABA has risks of bias (so the evidence of effectiveness is not clear), that there is sufficient reason to be believe that adverse events do occur when autistic people participate in ABA, and the majority of research on ABA is produced by researchers who also provide ABA as a service,” Bottema-Beutel said.
Sweeping structural reforms will also need to be made to America’s health care system to fully protect autistic children from potentially ineffective therapy.
“Parents often choose ABA because they are told it is the ‘gold standard,’ and because it may be the only kind of support that their insurance will cover,” Bottema-Beutel said. “In my opinion, this is a problem, and there will need to be systemic changes so that parents have options for supporting their autistic children that are not ABA, that are backed by solid science, and for which the risk of harm has been adequately studied.”
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