People are confused about ABA.
At its most basic, ABA is about changing “behaviour of social significance”. All ABA does this, or it’s not ABA. The parent(s) and/or therapist identify behaviours they want changed, and apply strategies to change them. Decisions on what behaviours to extinguish are made by people who believe that they have analysed and understood the relationship between the behaviour and the child’s environment, but many of these therapists and parents are quick to shut down any dissenting autistic voices who say they haven’t understood it correctly.
ABA is presented to parents as something that needs to be done intensively and early; if you miss the 7yo window, it’s too late. But why?
Adults or older children who *wish* to learn strategies to help them with social discomfort aren’t the concern. Choosing when to mask and when to release that mask is a privilege of free adulthood. Preschool children don’t have the luxury of choosing which behaviours they are allowed to keep.
It is also presented as ‘evidence-based’.
Now I am strongly a proponent of evidence-based interventions in medicine and psychology (I can still say ‘evidence-based’, cos I don’t work for the CDC…). But there are limitations to evidence bases, and in the case of ABA, the two largest limitations are the choice of outcome that is being measured, and the lack of accountability to the people most affected.
In almost all ABA studies, the outcome measures are pre-intervention/post-intervention measures of observable behaviours. In other words, “We saw the children (doing something or not doing something that is unacceptable). We applied the ABA techniques, then we observed again.”
Now here’s the thing. If you spend a lot of time with a child with a particular agenda in mind, the child will indeed change their behaviour to meet your agenda. Whether this is through fear, such as was common in the early iterations of ABA, or to gain approval and commendation, it will be somewhat successful in that it teaches children to give expected responses to specific situations. It’s like a child having intensive instruction in order to pass a music exam – they might be able to perform to the standard expected to pass that exam, but it doesn’t actually develop musicality in the child. In the same way, ABA teaches children to perform to a particular standard, but it doesn’t make those behaviours innate.
But nearly everyone who wants to play music has to learn it deliberately, consciously, step by step. Societally mandated social behaviours, on the other hand, are part of ‘normal development’. People who learn these skills without conscious effort consider that to not have them is anathema, that people who show different styles of social interaction are selfish, boring or weird, and that intensive therapy is required to ‘fix the broken person’. That agenda may be buried under the desire to do what what they consider best for the child, but it is still there, and it is still being internalised by the children subjected to it.
“But how can anyone possibly know what effect ABA has on our children? Who knows what’s going on inside their head?” I’ll give you a heads-up right now – there is an answer to that question, and it is NOT “nobody”. As your child grows up, finds a way to express themself, who will they identify with?
We, the adult autistic community, have our own style of social interaction.
Autistic-dominated space exists, though rarely, and it’s wonderful. It doesn’t always or necessarily involve spoken language, and it understands and welcomes stimming – including the big kind where you hang upside down or spin in circles. It rejects casual touch, or any touch without express permission. It frequently involves info-dumping and “proudly emot[ing] on a somewhat childish level” when we are thrilled by something, and it often includes long periods of sitting together quietly, reading or playing on our phones. In this protected space, we’re not socially deficient, weird, different, or broken – and socially-dependent neurotypical adults feel as awkward and wrong-footed in autistic space as we often do in the “normal” world.
In the experience of autistic adults (who were, please remember, autistic children, and *many* of whom were indeed “like your child”, however you perceive them now), imposing allistic expectations on autistic children is *not* helpful, and is actually quite detrimental to their mental health and well-being. The message of ABA is “you are different from other children, and that means you are broken, and need to be fixed.”
The fundamental goal of ABA has always been, and is still, one of “closing the gap”, making autistic children indistinguishable from allistic children. Like so many other minority groups, we have been told that our deepest language and ways of being are detrimental to us, obstructing our chance of achievement or being valuable to society. But being told in words or actions that we have to pretend to be neurotypical to be acceptable to the world is demoralising.
Demoralisation syndrome is a recognised psychiatric disorder, seen most commonly in people with disability or chronic illness. It is associated, among other things, with a subjective sense of incompetence and with feelings of dependency on others, and the perception of being a burden, and the syndrome carries a high risk of self-harm or suicide. Those awful videos posted by ‘Autism Moms’ of their child in meltdown. The blog posts describing how hard it is to parent an autistic child – with details of toileting habits and other private matters, there for the whole world to see, the muzzling of autistic adults who have spoken out against ‘To Siri’, the public sympathy for parents who kill their autistic children – these are all messages to autistic people that they are a burden on society.
And autistic adults have *told* today’s parents of autistic children this. We have told professionals and funding bodies and interest groups and organisations for some years now that ABA has had persistent negative effects on us, but we keep hearing, “but it’s saved my sanity, surely that’s good for him?”, “she behaves so much better now”, “ABA taught him to talk”…
Our objections are dismissed, ignored, minimised. We are shouted down in parents groups. We are blocked from pro-ABA pages. We are not seen as the authoritative voice of our own experiences. We are told, “but my child is nothing like you”, “but you’re so high functioning”, “my child will never be able to write like you”, “but ABA is different now”.
But it’s *not* different. It *looks* different. There are no more cattle prods, no more withholding of food to force a child to eat more widely, no more holding a stimming child’s hands at their sides so they can’t move (that’s stopped, right? Right?), but the message of ABA remains – “your way of being is not acceptable. We, the authority over your life, will try to fix you. If you don’t change, you have failed us.” As autistic children grow up, their voices are added to the tide of autistic adults around the world saying that the internalised message of ABA has caused them grief and trauma. And still nobody listens.
But we keep talking.
Here are just some of the things Autistic adults are saying about ABA.
“If your goal is to help a certain community, one of the first things you should do is make sure you’re in touch with the community you’re trying to help. Their voices are more important than anyone else’s.”
“Why I Left ABA”
“it is the autistic people being submitted and who have been submitted to ABA, and not the ABA practitioners, who get to decide if ABA is abusive or not.”
“A note to (what feels like) every ABA therapist ever”
“I propose replacing all of the garbage with more supports, more accommodations, and more acceptance of differences which naturally occur in human beings.”
“The case for backing the frick off”
“Sometimes aggression is the only way your child has to communicate that something is wrong. ABA might be able to stop the aggression, yes. But at what cost? Do you want your child to be trained to put up with pain and abuse? Of course you don’t! That was a ridiculous question. But it comes with an obvious answer: don’t use behaviorism to train your child out of aggression. ”
“If not ABA, then what?”
“Similarly, if you train an Autistic to make eye contact and not flap their hands and say “I love you, too” and stay on task, it just makes them into an Autistic who can fake being not-autistic with some relative measure of success.”
“Critics of modern day ABA, a lot of them adult autists who have grown up with this type of therapy, say that although it is a lot better, ABA is still abusive because it can physically hurt to be forced do to make eye contact, eliminate stimming or give hugs on demand. They argue that it violates the child’s autonomy and right to say no, especially when children as young as two are having programs of up to 40 hours a week!”
“Why ABA in autism therapy could use an overhaul”
“People claim it’s not that type of ABA, it’s modern, it’s kinder, and gentler, it’s not abuse. They try to remove our words claiming that what we’re talking about isn’t what they know, or what they do.”
“Any BCBA can cut some of those heads off the hydra, and say “Not all BCBAs are like that!”. Or “nobody uses electric shock anymore; that was in the 70s!” or “My ABA is play-based” or “I give kids frequent breaks; no 2-hour sessions of DTT here,” or “I would never extinguish stimming.”
But cutting off some of the obvious heads, or even all of the heads that self advocates have found words for, doesn’t solve the basic problems.”
“A basic problem with ABA”
“Before ABA is considered, ask yourself, is this a treatment you would employ for your neurotypical child? What message are we sending our Autistic children? What will this message do to their self-image? What message will be internalized, a message they will carry with them well into adulthood? Will this message serve them, make them feel good about themselves, help them lead happy, fulfilled lives.”
“Tackling That Troublesome Issue of ABA and Ethics”