Featured image: Illustration of test tubes arranged like a bar chart. Credit: digitalart
So some ABA apologism has popped into my mentions. Before I get stuck into it, here are some initial reactions by therapists, teachers etc. on ABA as described by OMum at Small But Kinda Mighty
- Please don’t be defensive or dismissive. I have often seen BCBAs (Board Certified Behavioral Analysts) respond to concerns about ABA and autism in the following ways:
- “Oh, this is just the neurodiversity crowd, overreacting again”
- “Look, we’re not all like that!”
- “You’re focusing on an outdated, outmoded form of ABA, we don’t do things like that any more”
- “I would never use aversives or be abusive to children!”
- “You don’t understand what ABA is. That’s not real ABA.”
- “I would never stop kids from stimming!”
I’m not here to make the same arguments over and over. If you want to hear from ex-BCBAs on what they used to do for a job and why they stopped, read these:
I’m here to talk about a demand that I haven’t heard until now in the ABA debate. The demand for a study proving this stuff is harmful.
Yeah, you heard that right. This person wanted official statistics on whether ABA causes harm. The word of Autistic people who’d had it done to them wasn’t good enough, nor the words of the above ex-practitioners who quit when they realised what they were doing was wrong.
If it hasn’t sunk in yet, we can’t produce these figures. Not because we’re wrong. Not because we’re liars. Because these figures don’t exist yet.
First, someone needs to fund such a project. Funding for investigation into the safety and efficacy of therapies usually falls to the organisation administrating the therapy, however in this case that’s not appropriate. There has never, to my knowledge, been a study on the long-term effects of ABA and other behavioural interventions. There’s plenty of evidence that the therapy works to achieve its stated goal: to modify behaviour, but none showing this is in any way beneficial, or that it’s not harmful. So then it falls to advocacy charities.
Advocacy charities encompass a wide range of views, but the ones that have the most clout in the autism world are the ones run by non-autistics, primarily for parents of autistics. These charities have a strong tendency to cater for the non-autistic desire for autistic people to act less autistic, so they already have an interest in these therapies. From their perspective, as I said above, they have all the proof they need. All they want to know is that it’s effective in changing behaviour.
So now funding falls to autistic-run charities. They don’t pull in a lot in donations, they don’t have the same kind of ad campaigns pulling in pity money. They don’t have the resources to push for this kind of study, a study that only autistic people and a few allies are interested in.
So we’re without funding. Unless ABA practitioners and organisations volunteer information about the interventions they perform, their short-term, mid-term and long-term effects, we just aren’t going to get that information. And let’s be realistic here, their entire purpose, their income, everything they do relies on persuading people that their therapy is effective. I would be amazed if they even bothered to check with their old clients how they felt about the experience and how it’s affected them longterm. Where’s the benefit for them in looking at folks 10, 20, 30 years down the line to see if there are any negative effects or trauma? There isn’t any.
The closest we could get to that kind of analysis would be self-report from people who’ve had ABA therapy. That’s problematic, for a start. To find ABA clients, we would either need to trust people to accurately report whether they’d had the therapy, or we would need the co-operation of the practitioners in finding old clients. Under data protection laws, the information can’t be shared by practitioners as it’s private health information.
So we’re left with volunteered self-report data that we have no way of checking. There are a whole lot of opportunities for pro-ABA folks to pick holes in that.
- Unless it’s facilitated by a charity or large organisation, will be restricted to people who are in a position to see the survey advertised. Depending on how and where the survey is administered, this may skew towards autistic activists.
- People who were not in ABA therapy but have an opinion on the matter may lie on the survey in order to swing results in their favour.
- As the pro-ABA folks love to keep telling us, not everything that is called ABA actually is.
There are also a lot of opportunities for such a survey to fail to capture the experiences of those who have been negatively affected by ABA:
- People who have been severely negatively affected by ABA may not respond to a survey as it may trigger their post-traumatic stress.
- Because the survey is aimed at autistic people, and our abilities and barriers vary widely, many people may not be able to respond to the survey due to inaccessibility.
- People whose communication needs are still not being met, for example those in nursing homes or with inadequate home care, may not be able to complete the questionnaire, or even find out it exists. It’s likely they may not even be offered it unless the survey is facilitated by medical professionals.
These points serve to skew the sample towards people within a specific cognitive range, who have access to communication techniques. Since people with intellectual disabilities and communication difficulties are more likely to experience abuse, this would be a significant omission on the part of any survey.
After all this, it’s still worth outlining what a potential survey would seek to learn about the experiences of autistic people with ABA therapies, or those therapies described as ABA.
- There should be some questions about the form the therapy took, to ascertain whether the therapy was ABA, or was falsely described as ABA. Analysis should take into account that therapy is performed on young developmentally and sometimes intellectually disabled children, so not all respondents may remember all the details.
- Optional questions about when and where the therapy took place, with the above considerations.
- How old were you when you had the therapy?
- Did the therapy use unpleasant punishments?
- Did the therapy prevent you from doing non-injurious stims?
- Did the therapy make you do things that were unpleasant?
- Did you feel respected by your therapist?
- Did you enjoy therapy?
- Do you feel that the therapy has been beneficial, has made no change, or has been detrimental to you. Take into account your emotional wellbeing as well as your skills.
- Have you suffered from any problems as a result of the therapy?
- Would you want parents to be offered the same therapy you had for their children?
- Any other comments.
With all that in mind, I have one last point to make in conclusion. The proposed study is incredibly similar to what we autistic activists are already doing: describing our experience with ABA. The overwhelming majority of the community who have had ABA would respond that the therapy has been detrimental to them long term. If their word isn’t good enough now, will putting it in tables and graphs and uploading it to PubMed make it believable for ABA supporters? I doubt it.