For many years, funders and parents have been informed that there is only one approach that works, for autistic people. Applied Behaviour Analysis, usually shortened to just ABA.
I and thousands of other autistic people in academia and other areas have raised grave concerns about this approach, and the behaviour of some of its followers.
Quite often, we are told that ABA is different now. Better. Kinder. We're told that it works.
I've done Blogs already on the research showing that it doesn't 'work'. Not even when allegedly stopping problematic behaviours. My general reading list around autistic research is kept at http://annsautism.blogspot.com/2019/01/autism-some-vital-research-links.html and details some of them.
This post is going to be about a particular book, which ABA enthusiasts term 'the white bible' because of its pale cover. We may wish to quietly consider why else they refer to it in religious terms, rather than scientific ones, but I'll leave you to be baffled about that for the moment.
OK, so what are we hoping to find in a book about how to improve children's lives?
Modern research into child psychology by the great name of modern history, perhaps?
Research into relationship, trust, respect, thriving?
Basic teaching principles, showing the difference between enforced rote repetition and actual learning?
Discussion of Human Rights, autonomy, ethics, & how to avoid adverse effects and long term harms when conducting research into new teaching methods?
Discussion of how to ensure disabled and neurodivergent children can rest, play and otherwise enjoy leisure time, without exhaustion.
The voices of children throughout, written with caring and respect, being careful to obtain their assent wherever possible, respecting their dignity and privacy?
Those are pretty standard things, after all.
So, what do we find in this 'white bible'? Published in 2020, so this is new and by a very famous team. These are just a few of my concerns.
No discussion of Human Rights, in particular the rights of disabled children to find an identity of their own (rather than have their own identity erased), & the rights for them to enjoy their needed possessions which help them cope and thrive. Yes, those are in the international Human Rights protocols.
No discussion of autonomy. Autonomy is about having the right to be your own person and make your own safe choices wherever possible, including the right to choose who is able to use physical contact with you. (Bodily autonomy). One should note from wider research that ABA enthusiasts will use physical contact or force to force a child to comply, including use of unconsented hugs.
No discussion of consent or assent (depending on age) from a child or young person. Any consent is sought from a parent/carer. http://www.crae.org.uk/media/26645/Teenage-booklet-final.pdf is a useful guide for young people on their rights, which you may wish to consider, here. Whilst of course parents should offer consent to appropriate care and treatment, it has to be informed consent. Are parents informed of the serious concerns that most autistic people have about ABA, before consenting to it, I wonder?
The book describes 'Planned Ignoring'. If an autistic child becomes distressed, crying, during an experiment on them, ABA enthusiasts are told to ignore them completely. Eventually they will give up trying to make their needs known, it explains (paraphrased).
I'd like us to stop there for a moment, and let that sink in. Yes, this is the new book on ABA, the 'white bible'. Yes, it's telling its people to ignore a child in distress. Have you heard of 'learned helplessness'? https://www.verywellmind.com/learned-helplessness-in-children-1066762 is a useful short article on how it can lead to anxiety, depression, complete compliance because there's no point in refusing to do an awful thing, because there is no escape.
Onwards... "Terminating specific reinforcer contact". If the child doesn't comply with something on command, take their stuff away until they do. On a closely related matter, look at this:
Above is an informal poll I did on Twitter, which received nearly a thousand votes. Note that most of those responding said that they would be traumatised to have their much needed items used in this way. Now, we can perhaps either say, "So what? Who cares how they feel - the only thing that's important is getting their compliance". Or we can think, "Wait, what? They're doing what? Do they know nothing about how autistic people use personal possessions to focus, to balance, for comfort, as items of spiritual and cultural significance?"
There's more. Let's keep going.
Page 395 tells people to put a child in a windowless space with nothing to look at or do, if they fail to comply. Sooner or later, they are desperate to get out of there and will do as they are told. Basically, imprison them in solitary confinement, as an autistic child? Is that right? I'm asking that as a question.
Turning to wider ABA materials, we're informed by the highly regarded research teams including papers led by Dawson, Fletcher-Watson, Bottema-Beutel & Rodgers, for example. https://journals.sagepub.com/doi/10.1177/13623613211031403 is a good starting point for reading. I'll put a snip here. I've marked some of it with bold print.
"The literature on nonpharmacological early autism interventions has profoundly influenced how autistics are regarded and treated. It underlies the widespread promotion of early interventions as having large and lasting effects on the lives of autistic people. But do these effects include short- and long-term harms? Bottema-Beutel et al. (2020a) investigated this rarely asked question by examining 150 early autism intervention group designs. Attention to adverse outcomes was absent in almost all studies and inadequate in the remaining few: 139 (93%) did not even mention or allude to this possibility, 11 (7%) had cursory statements, and none indicated that adverse events were monitored, much less how. Scrutiny of the poorly reported reasons for participant withdrawal and of effect sizes for reported outcomes yielded evidence that harms had occurred, yet were never interpreted as such. Bottema-Beutel et al. follow Rodgers et al. (2020), whose systematic review of early intensive applied behavior analysis (ABA)–based autism interventions also found a pervasive failure to consider harms. Nowhere in this highly influential literature was there any reported effort to monitor or collect data on adverse outcomes."
So, does this 'white bible' mention adverse effects or long term harms from ABA research?
I can't find a discussion of this anywhere in the book, which stretches to more than 900 pages in total.
Does it even talk about what autism is? Do the authors mention working with autistic specialists?
Do the authors talk about neurodiversity, or about the vital work on Double Empathy, Monotropism and other key theories that are revolutionising our understanding of this developmental difference? What about the ground-breaking research of Crompton & team into autistic social communication being effective, but simply different?
No, not that I can find in it.
I'm not joking.
How did this industry manage to convince funders and parents that ABA was the best, the only way, for some of our most vulnerable children and young people?
I'll leave you pondering that, whilst modern researchers, teachers and parents continue to make excellent progress by treating autistic individuals of all ages as fellow human beings, worthy of their full rights, and worthy of courtesy, safety, respect and (where possible) collaborative working.
Thank you for reading.
PS - wanting good alternatives to ABA? Contact groups led by autistic people alongside our allies. They can help direct you to what actually supports autistic individuals, including those with higher support needs (sometimes called 'severe' by some). A good Occupational Therapist and Speech & Language Therapist can help. So can really good modern training on autism as a mainly sensory condition, so that parents understand it's distress behaviour or a brain event, not anger. http://www.thinkingautismguide.com/2019/05/behaviour-analysis-autistic-way.html may also be helpful.