So I offered in my post on changelings and autistic history to write about a particularly controversial issue in the autistic community: the use of Applied Behaviour Analysis therapy on autistic individuals, particularly children and toddlers. Before I begin, though, I need to add a short disclaimer: to the best of my knowledge, I have never experienced ABA, but I have researched it intensely over the past year. This post, therefore, is not a personal discussion of its problems, but an exploration of its nature from an autistic historian’s perspective. And you might want to get a cup of tea now, because this post is a) long and b) sad. Trigger warnings for ableism and abuse abound.
ABA was pioneered by Dr Ivar Lovaas, one of the leading figures in research into autism as a developmental condition in the 1970s. In psychological terms, its approach was essentially Pavlovian behavioural modification applied to autistic children. As Pavlov trained dogs to expect food at the ringing of a bell, Lovaas aimed to associate ‘good’ behaviours – appropriate conversation and accepting physical contact, for example – with positive stimuli, first with enjoyable activities (playing with a favourite toy or reading about a special interest) and later with verbal praise and affirmation.
So far, so harmless, right? But Lovaas didn’t limit himself to positive affirmation. He also punished behaviours natural to autistic children that fell outside his definitions of “normal”, such as stimming, echolalia, or lack of verbal responsiveness. The experimental tactics used as deterrents in his lab at UCLA could arguably be classed as torture: physical violence, shocks from an electrified floor, and sounds of over a hundred decibels (loud enough to permanently damage hearing).
As a historian, I had to wonder how a set of such fundamentally abusive therapies were ever considered acceptable to apply to children regardless of their neurodivergent status, and in the process I discovered more about Lovaas’ attitude to the ‘patients’ that made him and his therapy a household name, particularly in North America. In an interview with Psychology Today in 1974, Lovaas claimed that:
“You start pretty much from scratch when you work with an autistic child. You have a person in the physical sense – they have hair, a nose, and a mouth – but they are not people in the psychological sense. One way to look at the job of helping autistic kids is to see it as a matter of constructing a person. You have the raw materials, but you have to build a person.”
Given that this is my blog, I’m not even going to try and sound objective in my feelings on this quote. The dehumanisation and lack of any kind of empathy displayed by Lovaas disgusts me, both as an autist myself and as the older sister and friend of other autistic people. Autistic individuals are frequently described as lacking a “theory of mind“, an ability to understand and replicate the thought processes of others, but Lovaas refused to even acknowledge his patients as human, let alone reasoning beings who’s behaviours are entirely explicable if you attempt to understand their point of view.
So, obviously, ABA has a loaded history if you’re stepping into it from a research perspective, but what about its position in the modern world? In the USA, it’s essentially cornered the market in insurance-funded therapy and support for autistic children, and it’s beginning to conquer the UK’s education system. It’s even making its way into (controversial) government policy – increasing funding to early intervention ABA providers is one of the recommendations to reduce the “autism dividend” and get more autistic adults into employment. How has something with such a horrific history gained such prominence? Ari Ne’eman, president of the Autistic Self Advocacy Network, claims that ABA providers prey on the fears of the parents of autistic children, that “if you don’t work with an ABA provider, your child has no hope.”
The purported results of ABA are also likely seductive to parents of autistic children, struggling under a mountain of conflicting and often confusing research they may not have the skills to process. Rather than presenting autism as an inescapable facet of an individual’s neurology, as the neurodiversity paradigm portrays it, it treats autism as a set of “curable” symptoms. With the correct set of rewards and punishments, they can transform a “broken” autistic child into a “normal” one. They also have evidence to back up their claims: according to a study by the UK foundation Research Autism, 25 hours a week of ABA therapy could significantly raise IQ scores for 2/3 of the patients undergoing it.
But even if I find the history of ABA disturbing and upsetting, why am I arguing about it when the statistical evidence claims it helps people? Because therapy that claims to help people can never be simply a numbers game. Many autistic individuals who have experienced ABA, particularly the “Quiet Hands” approach to stimming which mandates physical restraint to force a patient to sit still, describe their experiences as incredibly traumatic. A therapy with such capacity for damage, intended to be performed on patients less able or unable to articulate their suffering, is not worth the obvious risks, whatever the potential benefits.
From its basic tenets, ABA therapy is fundamentally hostile to the autistic patient. It views the autistic child almost as a broken robot, requiring reprogramming so that when given a specific input, they respond with a desired output, with no regard for the thoughts, feelings, or processes that come between the two. This view utterly disregards the feelings and thoughts of the person that it purports to help, and I don’t see how you can claim to be truly supporting someone’s eventual independence if you’re attempting to reprogramme them. (Stay put for an eventual blogpost where I talk about my Many Feelings About AIs in this context.) With such a systematic lack of empathy built into the basic premise, it’s no surprise that many autistic adults who have experienced ABA, both verbal and non-verbal, have spoken out against it.
The other problem I have with ABA is that it claims to improve its patients’ ability to function in the world. It doesn’t. In a best case scenario, it teaches an autistic person to ‘act normal‘, to mask their neurodivergence and fit in. As someone who can do this, I’m not going to claim it doesn’t have benefits, that it isn’t frequently useful. But if the best case scenario you’re imagining for your child through their therapy isn’t that they’re happy or fulfilled or emotionally healthy, but that they can ‘play normally’… That breaks my heart.
And so we come back to changelings. Because the question that changeling narratives and ABA providers ask is this: “What price are you willing to pay for a ‘normal’ child?”. And the tragedy is that the parents may be making that choice, but their children are the ones who will pay for it.
Note: For more information on Lovaas’ legacy to the autistic community, see Steve Silberman, Neurotribes (2015), pp. 285-309. It’s not easy reading.