Published in November 2023

The most widely known quote from Ivar Lovaas is that the goal of ABA is to make autistic people “indistinguishable from their peers”. The person who is considered to be the founder of behavioural therapy sought to eradicate the outward signs, the receptive and expressive behaviours of autistic people to make us blend in. It's a way of teaching masking. These two articles from Spectrum News and Neuroclastic are required reading, in my opinion, to understand the controversy around ABA within the autistic community.

It is true to say that many autistic people, if not most, are against ABA. There are a lot of loud voices calling for it to be stopped, and among these voices are people who have experienced it first-hand, and are survivors of what amounts to a traumatising intervention that clothes itself in therapeutic terms. ABA is often touted as “the only evidence based practice” for autism therapy, but there is a lot of research that evidences the harm it causes to the people exposed to it, and the neutral or mild satisfaction of the parents of the survivors of ABA.

ABA is widely experienced as a form of behavioural therapy that changes external behaviour to create a picture of compliance. It teaches children that their access to leisure time, preferred objects or to be able to have their needs met is conditional on gaining the acceptance of another person, or to performing tasks that have little or no real-world purpose, nor relevance to the child. While practitioners may have moved away from using aversives in therapy, the existence of the carrot must include the presence of the implied stick, the punishment inherent in the withholding of the reward.

This quote from ABA survivor Maxfield Sparrow is presented without comment:
 

“What looks like progress is happening at the expense of the child’s sense of self, comfort, feelings of safety, ability to love who they are, stress levels, and more. The outward appearance is of improvement, but with classic ABA therapy, that outward improvement is married to a dramatic increase in internal anxiety and suffering….I was once an Autistic child and I can tell you that being pushed repeatedly to the point of tears with zero sense of personal power, and knowing that the only way to get the repeated torment to end was to comply with everything that was asked of me, no matter how painful, no matter how uneasy it made me feel, no matter how unreasonable the request seemed, knowing that I had no way out of a repeat of the torment again and again for what felt like it would be the rest of my life, was traumatizing to such a degree that I still carry emotional scars decades later. It doesn’t matter whether the perpetrator is a therapist, a teacher, a parent, or an age-peer: bullying is bullying.”

There is evidence that people who have undergone this intervention have a higher likelihood of developing PTSD, indeed evidence that people who experience NO intervention for autism are 72% less likely to exhibit symptoms of PTSD. These symptoms can be see after just 4 weeks of ABA, and can persist for the rest of their lives. 

The same study suggests that autistic people (including the subject of an intervention) and the wider autistic community ought to have input into the goals and outcomes of interventions or therapy, and that this may reduce the harm effected by ABA.
 

In the next part we'll look at what that input means and how it will change the experiences of those who are exposed to ABA.

References:
 

https://www.spectrumnews.org/features/deep-dive/controversy-autisms-common-therapy/
 

https://neuroclastic.com/invisible-abuse-aba-and-the-things-only-Autistic-people-can-see/

https://www.emerald.com/insight/content/doi/10.1108/AIA-08-2017-0016/full/html 

https://www.alfiekohn.org/blogs/autism/

https://www.emerald.com/insight/content/doi/10.1108/AIA-02-2019-0004/full/html 

*Image credit: mine; one of the AGAPÉ sculptures by Anton Smit at Leonardslee Gardens, Sussex