Whose voice on ABA?

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 these therapists and parents are very quick to shut down those Autistic voices who suggest they’ve got it wrong, that they don’t understand what’s going on for the child.

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.  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.

“But volume [of case studies] tells us nothing about the quality of the studies or about the methods used to achieve outcomes (many early studies relied upon hitting the children).
What is a scientific study without random assignment to groups?
That cannot control or identify key variables?
That makes no measurement of treatment fidelity or treatment integrity?
That does not provide sufficient information to allow replication, due to inconsistent usage of terms, contradictions in descriptors of procedures and a mixed bag of comprehensive models?
All this without even getting into issues of researcher bias, attrition, small sample sizes, validity of outcomes, the reliability of the measurement of outcomes and the significant underrepresentation of the population under study.”

Hughes, M-L. (2008). “ABA: Giving Science a Bad Name?” The Psychologist, Vol 21 pp. 444-449. https://thepsychologist.bps.org.uk/volume-21/edition-5/letters

 

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.  They will become compliant.  As Ally Grace says in her blog post titled ‘Real Science’ and ABA, Peer reviewed medical and academic articles will only tell us that autistic children have been repeatedly, successfully, for many years, made more compliant through many hours of ABA therapy per week.

Whether this compliance 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 undergoing intensive instruction just so you can pass an exam. If you study intensively, you might be able to perform them to the standard required to pass that exam, but it doesn’t actually develop understanding of the subject in that child.  In the same way, ABA teaches children to perform particular tasks to a certain standard, but it doesn’t make those behaviours innate.

But societally mandated social behaviours are not usually learned intentionally – they are considered to be part of ‘normal social development’.  People who do learn these skills without conscious effort consider that to not have them is anathema, that people who show different styles of social interaction are weird and uncomfortable, and that children who don’t pick them up naturally require intensive therapy to ‘fix the broken person’.  This agenda is usually buried deeply under the desire to do what what they consider best for the child, but it is still there – and the message of brokenness is being internalised deeply 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?”
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?  The people who have been where they have been, who have shared suffering and joy in ways that reflect their own lives.

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 can actually be 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 language, our fundamental ways of being are detrimental to us, obstructing our chance of achievement or being valuable to society.  We are told in words or actions that we have to pretend to be neurotypical to be acceptable to the world – and this is deeply 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, with feelings of dependency on others.  It is associated with the self-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 public expressions of children’s private lives, the public sympathy expressed 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.”
This message is far more overt than people seem to think.  Quin, an Autistic adult, gives an outline of eir* first day of ABA as an adult. I found it hard reading.
https://theinfiniteofthought.tumblr.com/post/125270426788/aba-session-1-write-up
In a follow-up post, Quin describes eir overall experience of ABA.  https://theinfiniteofthought.tumblr.com/post/131513430858/my-experiences-with-aba

And ex-ABA therapists are also describing the mindset that allows children to become – not children who are struggling to cope with a complex and confusing world, but “the unruly embodiment of behaviors to be reinforced, shaped, or extinguished, a list of ‘excesses’ and ‘deficits’ to be tallied and managed.”  “I Abused Children For A Living”

And as Autistic children, the survivors of this “therapy” 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.”
“ABA”

“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.”
“Modern ABA”

“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”

* Quin uses e/em/eir pronouns.

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5 thoughts on “Whose voice on ABA?

  1. This is brilliant and I love it. I’m in an awkward space as a “somewhere on the spectrum” adult who babysits autistic children. I’ve seen exactly the kinds of things you talk about here, and I often can’t get the NT people to understand the problems (talking to my clients’ siblings is often much more fruitful, as they tend to know my client better than anyone else including the parents). Unfortunately (?), I’ve seen more and more genuinely helpful things like sensory integration, speech therapy, and OT offered under the guise of ABA. This makes it much harder for me to recommend that families stop their “therapy” programs altogether.

  2. Also, there’s the problem that “socially significant behavior” covers both utterly useless (and often downright harmful) nonsense like eye contact and actually useful stuff like learning how to ask for the bathroom or not go up to strangers and lick them (invasive of other people’s personal space and not particularly sanitary) or how to wait in a line instead of shoving through everyone ahead of you.

    As someone who didn’t receive any sort of intervention as a kid (aside from talk therapy in middle school, which was pleasant but I have no idea if it actually helped anything), I often wonder whether I could have better managed certain social basics if I’d been drilled on them… Or if I would find them just as terrifying despite having been forces to practice them. I can’t possibly know.

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