Editor’s note: Our interviewees prefer identity-first language.
Applied Behaviour Analysis therapy (ABA) is rooted in the assumption that external behaviour can be controlled and it originated from the idea that you can make animals behave the way you want to, said 33-year-old Rakshita Shekhar, a Bengaluru-based inclusion consultant and special educator. Shekhar, who was diagnosed with autism at the age of 30, said the principles of ABA were applied to autism because of the belief that “autistic people need to be taught how to behave themselves.”
Currently, ABA is more popular in North America and due to the limited number of experts is reportedly only accessible in 20 countries. It is practiced in a variety of settings including homes, schools and clinics.
Shekhar has not undergone ABA but has seen it being executed over her career as a special educator. Illustrating how a regular session would work, she said that it would usually begin with giving the child an instruction such as “pick the train toy,” and if the child does not comply after repeating it, the therapist would then hand them the train. If the child still does not pick it, the therapist would hold the child’s hand and make them pick the train. They are then rewarded with some sort of “positive reinforcement” such as a chocolate, thus “establishing the relationship that I have a reward [for you], if you obey my orders,” she told Re:Set.
There are many issues with ABA, Shekhar observed, the primary one being that it does not respect the individual and it works on the assumption that an austistic person does not know or cannot choose. “Who decides what is good and bad behaviour?” she said, adding that autistic people are often forced to learn behaviour that is seen as neurotypical such as making small talk and smiling. In ABA, many are also forced to learn how to maintain eye contact. “It can be physically painful and trigger a lot of anxiety,” she said. This could also result in more behaviour that is seen as negative such as aggressiveness, shutting down or complete withdrawal.
Nearly 46% of respondents who had been exposed to ABA showed symptoms of post-traumatic stress disorder.
Nearly 46% of respondents who had been exposed to ABA showed symptoms of post-traumatic stress disorder, with nearly 47% showing extreme levels of severity, revealed a 2018 study. However, others including therapists believe that some forms of this therapy are necessary to “help autistic kids develop skills they’re not acquiring naturally and reduce behaviors that are harmful to them, like self-injury.” Alex Lowery, an autistic person who went through ABA, has written about their experience and said it helped them pick up basic life skills and learn to socialize.
Maya Suresh, a special needs educator and founder of alternative learning school Shalabham Alternative Learning Space in Bengaluru, has mixed opinions about ABA. She remarked that the techniques usually only work for children until the age of 18 months. Early intervention against negative behaviour like head banging and biting is effective at this stage, Suresh said. Her opinion is shared by other experts in the field who have said that receiving therapy from a young age can have a significant impact on a child’s ability to develop new skills and can help them avoid future learning challenges.
Like Suresh, most of the proponents of ABA therapy have traditionally been parents of autistic children, educators, and therapists as opposed to people with the lived experiences of having undergone it.Each child with autism is different and strategies may not work across the board, Suresh said. Her 16-year-old son is autistic and was involved in ABA therapy till he was nearly four and communicated to his parents that he did not want to continue.
One of her main issues with ABA was that it did not take into account the needs of the child but only sought to provide negative or positive reinforcement without analyzing the factors around the behaviour the child was exhibiting. She gave the example of a child who may be “tactile-seeking or wanting to go for a walk.” When a child expressed the need of wanting to feel grass on their feet, they would simply be asked by a therapist to sit down instead of addressing that sensory need.
Keeping this in mind, she said that she uses certain ABA strategies with her son only when she really needs to get his attention and introduce new things in his routine.
The problematic history of ABA
But, others believe that ABA should not be practiced at all. “I am active in the online autistic community and all of us hate ABA,” said 26-year-old Ani who asked that his last name be withheld to protect his privacy. Hailing from Kolhapur, Ani was diagnosed with autism late last year and strongly believes that ABA therapy is abuse.
“It’s not easy for autistic kids in this world, but it’s not because they are autistic, it’s because society is ableist.”
Reflecting on the opinions held by the community, he said that seeking to “cure autistic traits” impinges on autistic personhood. “Most autistic people deal with sensory overload by stimming,” he said. Stimming is self-stimulatory behaviour that may be repetitive and involve body movements such as rocking back and forth and hand flapping. He remarked that using ABA to stop this leads to sensory overload and makes the person uncomfortable.
Ani is one among the many who are currently raising their voice against the method. One of the persons who designed ABA — Ole Ivar Lovaas — also facilitated gay conversion therapy and created this technique to ”cure” trans boys of gender dysphoria, Ani said.
Also read: Accounts Of An Autistic Teacher
Lovaas has been strongly criticized by experts in the mental health space for his problematic views on autistic children, going even so far as to call them “not people in the psychological sense.” Lovaas advocated for techniques such as withholding food, affection, and even electric shocks, claiming it would help “construct a person” so they would appear more like “typically-developing children.”
“It’s not easy for autistic kids in this world, but it’s not because they are autistic, it’s because society is ableist,” Ani told Re:Set. The focus needs to be on making things more accessible for autistic kids and “not trying to abuse and convert them into an arbitrary ideal of normal,” he said.