Nothing About Us Without Us: The ableist nature of ABA therapy used to treat autism
At the beginning of 2021, musical artist Sia has caused waves of controversy. Earlier in February, her directorial debut Music was nominated for a Golden Globe. The film features an autistic character played by Maddie Ziegler, who is not autistic. Sia received criticism for her choices from autistic folks for many reasons, however, the main point of contention was the exclusion of autistic people themselves. Autistic people have had alarmingly little say in issues involving them and one of the most highly debated ones is Applied Behavioral Analysis therapy or ABA. ABA is a form of behavior therapy that is widely seen as the ‘gold-standard’ for treating autism. However, autistic people and those in the neurodiversity movement strongly disagree. The neurodiversity movement does not view autism spectrum disorder as something that needs to be treated and cured. On the contrary, ABA focuses almost exclusively on “correcting” behaviors of children with ASD, molding them to fit the norm. Ultimately a therapy that historically has had aversive and abusive tactics is harmful in the long run, and most of its proponents do not include autistic people themselves. Films and therapies made for and about autistic people should listen to and value their voices. Instead harmful practices have been perpetuated, and the negative consequences are clear.
As a psychology student who has worked professionally with children for years, and somebody who wants to go into the mental health field and work with autistic children, I do not feel comfortable entering a career field where abusive practices are normalized and tolerated. Today, ABA is widespread throughout the United States and is highly funded and respected within the medical industry. Much of the support for it has come from parents of autistic children and due to their lobbying efforts, 38 states between 2010 and 2014 have introduced laws requiring insurance to cover ABA-related costs. The support for the therapy runs deep and garners millions of dollars in profit. Autism Speaks, the largest Autism related charity in the United States, consistently champions and recommends ABA for autistic children. It is worth noting that the organization has an overwhelmingly negative perception within the autistic community; autistic author and former member of the Autism Speaks Scientific Advisory Board John Elder Robison has written that “Autism Speaks is the only major medical or mental health nonprofit whose legitimacy is constantly challenged by a large percentage of the people affected by the condition they target.” Although their credibility is called into question by many activists, the organization and its recommended methods have a wide reach, and “anybody researching autism following a recent diagnosis will quickly find recommendations for ABA”. Ableism, much like ABA, operates under the assumption that there is something about the behavior of people with autism that needs to be corrected or fixed in order to comply with the norm, rather than seeking to understand and accept neurodiversity. The harmful effects of this are difficult to quantify, but one study has found evidence of increased post-traumatic stress symptoms in those exposed to ABA.
Historically, ABA practices began with the philosophy of behaviorism and the concept of operant conditioning. B.F. Skinner first coined the term operant conditioning after conducting an experiment with animals and discovering that he could modify their behavior with rewards and punishments. It was Ivar Lovaas who first began applying these principles to autistic children with self-admitted “harsh” punishments. He maintained that this was the only way to cure these people who in his view were “not people in the psychological sense”. Claiming that these people are “not people” until they are cured through behavioral punishment is dehumanizing and cruel. A therapy with this dark of a past should not be continuously promoted in popular culture without complete reformation and an acknowledgment of its harmful past practices. Even though many of the more aversive punishments of ABA have been widely discontinued, the concept behind the therapy still promotes ableist ideals of forcing children to fit into a “norm”. Eric Shyman, a professor of special education with a specialization in autism, argues that a more humanistic approach is a viable solution in place of the current behavioral approach of ABA. A humanistic approach to autism therapy would be more person-centered and oriented around both internal and external motivation. Current practices of ABA fail to consider the voices of autistic children themselves, solely focusing on getting these children to reach some form of “normality”. These interventions result in trying to force a child to engage in behaviors such as maintaining eye contact or obeying commands such as “hands down” with no internal motivation or understanding of why. These commands are intended to discourage stimming, which are self-soothing behaviors that provide comfort for autistic and other neurodivergent people. These commands and practices “[are] undoubtedly abusive and frankly irresponsible when understanding the autistic brain”. C.L Lynch, a self-described autist and author, writes that as someone who knows what autism feels like, she knows firsthand that “it is abusive to ignore a child’s attempts to communicate because they aren’t “complying” with a demand that makes them uncomfortable”. ABA excludes the voices of the people that it is claiming to help.
Ultimately, whether it be media representation or treatment practices and organizations, decisions and practices about autism and autistic people should not exclude autistic voices. While parents, caretakers, and other charities such as Autism Speaks may have good intentions, they fail to accept and honor neurodiversity and ABA reinforces historically cruel behaviorist practices. It is time to listen to the voices that have been affected and reckon with the damage that has been done.
Isabella Molano is a recent graduate of Macalester College in St. Paul, Minnesota where she studied anthropology and psychology. She is currently working in early childhood education and plans to pursue a career in the field of youth mental health.