What do you think of ABA?

I think Applied Behavioral Analysis (ABA) as it is used today to inform the clinical response to autistic children for being autistic, and to reward autistic children when they act like they are not autistic, is largely cruel.

I experienced the wrath of the ABA lobby first-hand, late Summer 2023 in response to my public call to psychologists in advance of the 2023 APA Annual Meeting, and I’m not impressed with the individual providers’ lack of integrity, given how some of them even took to emailing the university where I have taught for twenty years in the psychology department.

New ABA tho?

I also don’t think that “New ABA” is better than the more overtly harmful ABA applications of yester-year, just because they stopped hitting the kids. By the way, they didn’t universally stop hitting the kids. Look up what’s going on still to this day at the Judge Rothenburg Center (JRC) in Massachusetts. The folks who run that place speak, as “ABA experts” at most ABA Psychology Conventions.

This type of harm is sanctioned by the discipline, so don’t tell me about “the new ABA” being better until you can tell me why the JRC is literally still shocking Black children like caged animals.

And it’s disturbing to me as a person with a lot of empathy how so many parents rejoice when their autistic child finally breaks, because for a while the kid is able to act and to perform as if they are not-autistic for a bit, in order for either the punishments to stop or for the denied human interactions to resume.

Money Talks

I am aware that in 2024, ABA is still the only thing US health insurance will pay for if your child is autistic and they need support. The scarcity of options creates a fallacy in that people are left assuming that ABA must be good, because it stands alone.

There are so many people working on that. Please also read my Summer 2023 ABA and AMA article, if you have not previously read it. I want you to realize that the motion within the AMA (which at least got ABA removed from being explicitly named) was brought forth by the medical students section.

I’m not surprised that it’s the medical students section of the American Medical Association that is on the cutting edge of how to better support autistic patients, and knowing that it would be to not pathologize their nature. They would also be less persuaded by other factors, because they’re not yet out there practicing, and able to be lobbied to, and bullied by their administrators to do what brings in the cash flow from all those big ticket ABA health insurance claims.

Dear Parents

And now I’m looking at you, parents-of-children-with-autism. Please think about what you know, at least in the US, about how things get funded and which things end up being funded. Think of other industries you are perhaps more familiar with. When there is only one option available to everyone? despite so much pushback and evidence of its harm? What do you know about that one option?

At minimum, “there’s more to the story” right?

Of course there is. And ABA centers pop up in some places like those Little Caesar’s franchises do. I was starting to wonder if they were going to do a thing, like Dunkin Donuts and the ice-cream place did. Get you some ABA punishment and maybe a scoop of mint chocolate chip. It’s all about the market and what will sell where.

But if you honestly believe that The Best Things are what prevail and endure, when there is only one thing that US health insurance will pay for? I’m sure that you should go ahead and read some other website because we cannot have a serious conversation. Also, there are sooo many jokes about the people who have swamp land to sell you, but I will skip those.

ABA is still the only thing US health insurance will pay for if the child’s diagnosis is autism and it’s treatment that is sought. That is correct. That does not make it a good thing in most cases.

TL;Dr

If I were related to an autistic child for whom I had any input toward what would be done to them?

I would make ABA our very last choice rather than our first choice. It’s probably not needed and probably going to do harm. If you haven’t yet weighed that potential for extreme harm out? You don’t yet have enough information to be making this decision, dear parent.

Because you know what? I’ve got a small but growing facebook page community with a few thousand autistic adults, many of whom are estranged from their families of origin. Why? Because they abused them in this way. Wanna risk your kid never talking to you again as soon as they can legally become free of you? Go this route.

When is ABA Okay

I don’t know that I’d ever deem it okay. I would say that there are a very few individual cases for which I believe that the damaging and flawed ABA interventions may have to suffice in limited durations of time. One such use case is this: a Black, male, autistic teenager who has access to all the other kinds of supports and therapies and a safe, loving and neurodivergent-affirming home, and still cannot seem to stop from, I don’t know, flailing his arms when he’s excited.

Well? Yeah. Police can end the life of that child for making that motion, and won’t they do so. And so a very loving parent may reluctantly choose ABA until we can fix the whole US police system so that they are less lethal. But this is not my call, nor my decision. I came to this opinion from being informed by Black autistic parents of Black autistic children, who know things that I don’t about what it takes to stay alive.

If you’re not fighting that battle? You probably don’t need to subject your kids to this harm. And you also probably should do what you can to reduce the lethality of the US police in your municipality, because they are a social determinant of health for Black Autistics and that is ridiculous.

Autistic Researchers

A recent article was written about the future of autism research by a whole tribe of autistic researchers who research autism (Pukki et al. 2022). As an autistic researcher myself, and as a disabled academic, I have come to hold a higher bar for representation. When these folks say “Nothing about us without us,” they are autistic researchers who research autism, and they are talking about that part.

So, what did the autistic resarchers say about ABA? What I will do for the reading-averse is to share the excerpts that I appreciated. This is a reading through my lens. For your own, please consider it for yourself.

Excerpts (Pukki et al. 2022)

“Regarding the neurodiversity paradigm, we wish to point out that considering something as natural variation does not equal claiming that it ‘does not need intervention.’ It means preferring interventions that target systems and environments, supporting individuals to thrive as they are, instead of trying to bring them closer to the ‘perceived norm.'” (p.94-95)

“Most autistic people’s primary wishes for the next 5 years would not concern clinical interventions but matters of law, ethics, policy, and how these translate into support practices and realization ofhuman rights.” (p.94)

“Diagnostic services must be seen as a basic right for all autistic people, not something that clinicians grant at their discretion or only when the diagnosis can lead to the provision of interventions. Diagnosis helps both children and adults to develop identity, self-knowledge, and personal strategies, and to start engaging in peer support, self-advocacy, and collective advocacy. These can be crucial to well-being, quality of life, and realization of basic rights, especially when very little else is available.” (p.96)

“Historically, autistic children and dependent adults who are unable to give informed consent have been enrolled in experiments that may not ha ve been allowed on non-autistic people, based on weak, far-fetched hypotheses. This has fed the creation of new pseudo-treatments. Research that focuses on pseudo-cures decenters the voices of autistic people regarding our actual needs and priorities.” (p.96)

“Autistic people’s organizations have attempted to draw attention to the fact that defining the behavioral characteristics listed in diagnostic criteria as ‘‘core,’’ and trying to develop biological treatments with behavior as the primary target and means of measuring success, is both unwanted by many autistic people and likely destined to fail; similar behavior does not equal similar biology.” (p.96)

“We urge researchers to focus the development of medications on co-occurring health problems that autistic people identify as distressing, and to target clearly identifiable biological factors instead of behaviors, with the aim of improving autistic people’s quality of life and appreciating neurodiversity in this context as well as others. We predict that for many of us, better health would automatically lead to some positive changes in cognition and behavior as well as quality of life and well-being.” (p.96)

“Changing behavior, as such, should not be the main goal of clinical research or treatment for autistic people of any age. Appearing autistic or acting in typically autistic ways should not be considered an illness. Clinicians need to be aware of the potential mental health risks of ‘camouflaging’ and avoid encouraging or manipulating autistic people to engage in it, even through naturalistic or play-based methods.” (p.97)

“Seventy percent of ABA research has been reported to involve conflicts of interest, with less than 6% of the researchers declaring the conflicts. A recent US Department of Defence report on their Autism Care Demonstration program, which involves 47,000 certified ABA professionals and provides services to nearly 16,000 autistic people, mostly children and adolescents, expressed serious concerns about the lack of results from their ABA provision.” (p.97)

“We invite researchers and clinicians to join the critical conversation about ethics in autism research and services, and to actively include the voices of diverse autistic individuals and communities in their work. We wish to draw attention to power imbalances and lack of accessibility in such discourse.” (p.97)

“Current common practice that exacerbates the power imbalance is inviting individual autistic people to take participatory roles in research projects, representing their own ‘lived experience’ only; in these roles, they are isolated, engaging with powerful organizations as individuals, often with very limited personal resources.” (p.97)

“To break existing imbalances, it is also imperative to differentiate key stakeholders. In the case of autism research, stakeholders such as parents, caregivers, and clinicians are driving the research agenda. For decades, researchers have suggested therapies or interventions, often dismissing the views of those who have received them. Acknowledging autistic people as the key stakeholders is an essential and fundamental step forward.” (p.98)

“Autistic people must be involved in setting the research agenda and have decision-making power in autism research, and not be merely tokenized.” (p.98)

Reference

Pukki, Heta, Jorn Bettin, Avery Grey Outlaw, Joshua Hennessy, Kabie Brook, Martijn Dekker, Mary Doherty, Sebastian CK Shaw, Jo Bervoets and Silke Rudolph. 2022. “Autistic Perspectives on the Future of Clinical Autism Research.” 4(2):93-101. doi: https://doi.org/10.1089/aut.2022.0017.