No. ABA therapy cannot affirm neurodiversity without becoming something that is not ABA therapy.
(That title is not click bait so I will not “bury the lede,” as newspaper editors say.)
Why am I writing about this? I’m responding to an academic article titled Affirming Neurodiversity within Applied Behavior Analysis that was published online on January 25, 2024 by the Association for Behavior Analysis International in their journal, Behavior Analysis in Practice.
I learned about this article when I was recently tagged into a Facebook discussion about it, due to my work being quoted and cited in the article. In fact, the References section of the paper reads like a who’s who in anti-ABA autistic advocates, activists, and our allies: The Autistic Self Advocacy Network, Finn Gardiner, Kaylene “Autistic Mama” George, Alyssa Hillary, Stephen Kapp, Henny Kupferstein, Dora Raymaker, Mel Baggs, Christina Nicolaidis, Shannon Des Roches Rosa, Amy Sequenzia, and many more.
The article was written by Sneha Kohli Mathur of the University of Southern California, Los Angeles and SpectrumSuccess.com; Ellie Renz of the University of Illinois, Chicago; and Jonathan Tarbox of the University of Southern California and FirstSteps for Kids, Alhambra, California. In the information box about the authors, it says “This article was authored by a neurodiverse team of scholars, practitioners, and advocates.”
People think I get picky about the language of neurodiversity, but this is an example of why I care so much about the words we use: A “neurodiverse team” can be a team of neurotypicals and one person with dyslexia. It doesn’t necessarily mean there are any autistic people involved in this project. I had to research the authors to figure out who they are:
Sneha Kohli Mathur owns SpectrumSuccess.org, “Inclusion and Neurodiversity Consulting,” in Orange County, California and is the co-author (along with Autistic author Adam Paul Valerius, who began as one of her clients and contributed heavily to her doctoral dissertation) of Understanding the Lived Experiences of Autistic Adults. Mathur is a BCBA (a certified ABA therapist), and her bio begins: “Sneha considers herself an ally to the disAbility and Autism communities, and started Spectrum Success in order to support individuals on the autism spectrum, while educating “neuro typicals” on how to create a socially inclusive community.”
Sneha Kohli Mathur is not autistic.
Ellie Renz has a bio on the page of the upcoming Women in Behavior Analysis conference says: “Ellie Renz is a neurodivergent Ph.D. student, earning her doctorate degree in Disability Studies at the University of Illinois Chicago. Ellie, Jonathan Tarbox, and Sneha have a paper in review covering the criticisms levied against the field of ABA, from which we created Neurodiversity Affirming ABA practices” That page also lists a 57 minute, $19 class taught by Renz, Mathur, and Brian Middleton called “Affirming Neurodiversity within Applied Behavior Analysis” that imparts BCBA continuing education credits in learning and ethics.
Ellie Renz is neurodivergent but does not disclose her specific identity.
Jonathan Tarbox also has a bio on the behaviorlive.com page , and his bio does not disclose any disability. He teaches courses about “compassion-focused applied behavior analysis.”
Jonathan Tarbox is not autistic.
This means, as I suggested might be the case, this “neurodiverse team” is two-thirds neurotypical and one-third neurodivergent of unknown identity. But because so many Autistic adults have chosen to identify as “neurodiverse” because they don’t like identifying as “divergent,” the notice about the authorship of this paper is ambiguous enough that it could appear to have been written by Autistic people.
It was not.
I’m not even clear what the authors mean by “neurodiverse” since they used the word correctly in that announcement about the authors, but the paper itself mentions “neurodiverse individuals” (“diverse” is a plural word, so linguistically only groups and people who are multiple systems can be diverse) which feeds into that misconception that the authors are all autistic.
Moreover, the authors bounce all over with their language, never define “neurodiverse” (though they wrote that “Neurodiversity is a concept that was developed by neurodiverse individuals”) and then incorrectly define neurodiversity:
”Neurodiversity includes, but is not limited to, autism spectrum disorder, attention deficit disorder, intellectual disabilities, and communication disorders, or a combina- tion of such, but this article will focus on feedback from autistic individuals who have been able to communicate, verbally or in written form, their experiences with ABA.”
“Is not limited to” lets them weasel out of responsibility for having defined so-called neurotypical people out of the concept of “neurodiversity.” Neurodiversity means EVERYBODY and EVERY BRAIN has worth. Everybody means everybody, not just disabled and/or diagnosed people. Somehow they managed to recognize that their writing team that is two-thirds neurotypical is a neurodiverse group but missed noticing that neurodiversity means everybody, not just neurodivergent people.
Looking up the authors did help me understand one thing, though. When I first saw this paper, I thought it could be one of two things:
- Do-gooders believing they can make ABA into something neurodiversity affirming; or,
- Enemies of neurodiversity attempting to demonstrate how incompatible ABA is with neurodiversity-affirming actions, so that everyone could see that we are clearly the enemies of ABA.
But it really does appear to me that these writers believe they are helping autistic people.
They certainly got off on the wrong foot with many of us, though, as I am seeing many Autistic activists on Facebook expressing anger and revulsion, seeing so many anti-ABA activists being quoted and cited in an ABA journal!
So I read their paper.
Some of the activists I read on Facebook were not even able to do that. They openly admitted that they were so appalled to see the paper that they couldn’t bring themselves to read it. I had to calm down before I read it, because the whole idea of the article gave me an upset stomach.
But I read it and my main take-away was that ABA and being neurodiversity affirming are fundamentally incompatible.
The authors did do a great job of documenting and validating our complaints with ABA. They affirmed that we have “unparalleled expertise in [our] lives and our own communities.” They acknowledged that non-autistic professionals “can never comprehensively understand the emotional, physical, and sensory experiences of being autistic.”
I feel that they slipped a bit in identifying our main complaints with ABA but mostly got it spot on:
- ABA is “based on the unethical goal of erasing autistic identity” (no, it is based on the unethical goal of erasing autistic existence. Many of the autists who were subjected to treatments designed to make them “indistinguishable from their peers” were never part of the larger autistic community and didn’t have an autistic identity. Still, ABA attempted to erase their identity by forcing them to pretend to be a different sort of person in order to please others. Calling it “autistic identity” makes it sound more political and less personal, more performative and less about core humanity.)
- ABA “overrelies on compliance and causes long-term negative impacts for Autistic people” (Yes. This exactly. ABA grooms us for r*pe and abuse by teaching us that we must say yes to others all the time or suffer for it.)
- ABA “reduces Autistic people to overt behaviors” (yes. Behaviorism cares about behaviors to a harmful degree.)
- ”Autistic voices are absent in ABA research and practice” (We have often asked, begged, demanded to be heard, true, but there are a lot of autistic voices in ABA practice….most of whom are keeping their diagnosis secret out of fear that they will lose their career if they disclose. They are also keeping their work secret for fear they will lose their community if people know they work in ABA. The impression I have gotten is that most autistic people don’t want other autistic people involved in ABA research and practice. They want ABA to go away. My own belief is that a watershed amount of Autists working in ABA would naturally lead to the dismantling of ABA and the building up of a new form of support and education, but all of that is tangential and outside the scope of what I’m writing about today.)
- ”Professionals pressure parents into only considering ABA” (this complaint is spot on and well-presented. I have watched parents being pressured by professionals who threaten to have their children taken away, who tell parents that they are abusing their child if they don’t sign up for ABA, who point out that ABA is currently the only therapy covered by insurance in many states.)
Instead of working to tear down these complaints like so many other BCBAs seek to do, these authors use our own words to defend our criticisms. This paper could serve as a resource, demonstrating that our complaints are legitimate. There are aspects of the paper that are redeeming, though I do wonder how many BCBAs will read and really understand what we are saying. I was surprised that a paper like this even made it into Behavior Analysis in Practice. Maybe there are more receptive BCBAs than I had imagined?
But there is, of course, a down side to all this. This paper could help those who oppose us by teaching them what talking points they need to try to refute. It could be weaponized against us by those who point out (accurately) that the authors’ picture of what neurodiversity-affirming ABA would look like is no longer ABA. The Autistic people and allies quoted in the paper could become targets of attack from some of ABAs most aggressive defenders who (correctly) believe we would like to see an end to ABA (and thus, their careers as BCBAs).
The showpiece of this article is Table 2, “Less-optimal ABA practices and potential neurodiversity-centered practices”. The table puts all five of the above complaints into a column labeled “criticism.” The second column lists “less-optimal ABA practices” that map to those criticisms. The third column lists “Neurodiverse-centered ABA Practices.”
(Once again, they’re using the language loosely enough that it’s hard for me to tell exactly what they mean to communicate when they use words from the “neuro D” family. I no longer police neurodivergent people for the ways we use and mis-use this language because I am not the identity police, but it bothers me when professionals can’t get it right. It also bothers me when professionals who have no interest in neurodivergent-informed therapy use our language to try to hide what they’re doing, though, so maybe they’re doing us a favor by using the language so poorly? They aren’t teaching other BCBAs how to hide behind our language. The less someone actually listens to actually autistic people, the easier it is to see through their shoddy appropriation of our language.)
The third column lists things that I really wish all Autists had access to, like educating people about neurodiversity and self-acceptance. But can ABA empower clients and still get compliance from them?
The gem in the crown of this table is this “neurodiverse-centered” practice: “Assess for client assent and assent withdrawal and reinforce assent withdrawal.”
This would be beautiful. Respect our “no.” Reward us for telling you we will not comply. I love this! It is something I watch for when I am working as a DSP (Direct Support Professional): is my client complying because they want to or because they think they have no choice?
It is not easy to respect someone’s “no” when you have been charged with taking care of them and helping them. The people I have supported in my career want to do things every day that aren’t in their best interest. I do try to stop them from things that could genuinely harm them, like not wearing a seatbelt or eating something they found laying on the ground. I try to separate my own ego from the situation and I try to apply reason: do I want them to stop because I want them to listen to me and respect my authority? Do I want them to stop because they could get sick or injured? Do I want them to stop because society looks down on people who do the things they do?
I reserve my “demands for compliance” for the big things that align with their larger desires. A half-eaten donut covered in ants might look very tempting, but I know my client hates to be sick, so I urge them not to follow their desire in the moment.
But ABA is different from taking a person to the park to get some fresh air and exercise. ABA is trying to teach people things, like how to sit at a table for 30 minutes and ignore your body’s fierce demands to be up and moving around.
When a BCBA promises she will work on making a client “table ready”, she might be trying to make a client do something that is neurologically unsuited for them. She might believe she is doing a good thing. Being “table ready” means eating with family, sitting at a desk in a classroom, joining society in important ways. (If I may be tangential again, why aren’t we re-building society in ways that don’t require people to sit at a table for hours? That’s not good for anyone, says the person sitting at a table to write these words.)
If this BCBA is also charged with “assess[ing] for client assent and assent withdrawal and reinforc[ing] assent withdrawal” she can’t do what she was trained to do: Bring the client back to the table over and over and over until they are able to stay there.
And if sitting with quiet hands at a table for 30 minutes is something that is going to make a client feel like they are being attacked by a colony of fire ants, there’s going to be a fight. I’m not going to bother linking to any of the many, many videos on YouTube of BCBAs and clients having those sorts of fights because they’re really distressing to watch. But I assure you, there are plenty of videos out there of therapists telling clients things like, “I’m not going to let you win this.” There are videos of clients having their “no” rejected again and again until they hit or pull hair or bite because they have a body that is never going to be “table ready” and no one is respecting that fact. (And then they get punished for hitting, which is like slapping a final piece of tape over someone’s mouth to shut them up when they complain. Except you can peel the tape off and yell some more. Non-speaking autists often just get shut more and more down until the people around them act like they’re caging an animal instead of socializing a human.)
Literally, ABA cannot be ABA if it teaches people self-acceptance, confidence, and the self-advocacy of withdrawing consent when required to do something that feels horrible.
The paper recognizes this: “Assessing and honoring client assent throughout the treatment process would eliminate the ABA field’s reliance on escape extinction and compliance training.”
Yay. And…this whole paper dissolves nearly everything in the ABA toolkit in a similar manner. If someone takes this paper seriously and comes out the other side deciding to implement the suggestions, they are no longer practicing ABA.
I feel like I am still figuring out how I feel about this paper. Part of me wants to hate it, part of me wants it to succeed. I feel generally uneasy, like there are missing parts in a complex machinery and it doesn’t look like the machine would be safe to run.
What I most want to see in the wake of this paper is concrete: how do the BCBAs who wrote this paper run their own practices? Not how do they SAY they run their practice. How do they actually run it, day to day, large and small concerns alike. The authors claim they have developed a neurodiversity-affirming form of ABA. Show us. What are you doing with and for your clients? What does this new “new ABA” actually look like?
What are they using my words about my pain to sell to the ABA world? What are they using dozens of Autistic activists’ words to profit from? This paper tries to claim what their form of ABA is not. I want them to put their money where their mouth is and show us what this alleged neurodiversity-affirming ABA is.
If you’re reading this, Mathur, Renz, and Tarbox, you have upset a lot of Autistic people with your paper. What positive things will our community be gaining from your work?