We need to talk about Kupferstein.
Let’s preface this by saying that I fully support further research on ABA’s effects on the living beings these strategies are used on – human or otherwise. Most human services, such as medical and psychology, make sure to examine side effects on any treatment before it’s released. Hell, even behavioral science applied to animals has looked into this and made adjustments to their best practices. It’s shameful that ABA doesn’t do the same.
That being said, no matter the outcome, good science is important. Whether you’re in the camp of ABA can do no wrong, ABA is always wrong, or ABA can and should do better, no one’s arguments are helped by bad sources. Unfortunately, sources are not always accessible to everyone. In fact, this is rarely the case. So most people are left to trust those in their community to filter the information for them. This has resulted in people on all sides throwing their equally bad sources at each other like a food fight. Getting hit with anything is going to be bad, just for different reasons depending on what it is.
There are PhD-level scientists who clearly do not understand this, but the fact of the matter is adding a source does not make an argument more valid. Even moreso, the number of sources you put in your paper does not inherently improve the validity or strength of an argument. The amount of times I’ve read an overconfident paper with questionable conclusions that they just riddled with as many citations as they could is frankly shameful for a field that calls itself a science. Looking into some of those “supporting” sources, there have been too many times that the support those sources lend to the argument are dubious at best.
Always double-check the sources, kids. At least skim them. Seriously. Please.
Anyway, when an article starts making the rounds and touted as the final nail in any side’s coffin, it gets my interest. Of course, I want to see what these amazing arguments are that will definitely shut up the neurodiversity movement for good. What wisdom has just been published that renders ABA inarguably obsolete?
I’d like to say I’m disappointed every time, but that would imply things about my expectations that are just untrue.
So along comes one such article: Evidence of increased PTSD symptoms in autistics exposed to applied behavior analysis (Kupferstein 2018). Some people in the community were literally declaring it the most damning evidence of all against ABA, that it proved without a shadow of a doubt that ABA is harmful and causes PTSD.
Before I go into why this article is bullshit, let me reiterate again: I am NOT denying that ABA has or continues to do harm. I think there are enough articles on this blog showing that I acknowledge that. All I am saying is this article is not the flex people think it is.
So here’s the study
According to the abstract, the aim here was to evaluate how prevalent PTSD was in autistic people who had received ABA – like the title says. The whole study was done through an online survey, on which they received 460 respondents: an impressive response rate, especially for a survey. The survey screened for Post-Traumatic Stress Symptoms or PTSS through input from autistic adults or caregivers of autistic children.
The nitty gritty methods
Kupferstein recruited participants through social media, email, social groups, and databases. To be included in the study, participants needed to simply be at least 18 years-old and either formally or self-diagnosed. In the interest of privacy, Kupferstein states that she didn’t collect any diagnostic reports or other verification of a diagnosis. Of the 460 participants, 217 were caregivers of autistic children, 79% male children, and 21% female, including 1 transwoman. The children’s ages ranged from 1-38, with an average age of diagnosis of 4.69 years. The adult autistic respondents made up 243 of the 460 total participants, 33% male, 55% female, and 14% other genders. The age range was 18-73, with an average age at diagnosis of 25.38 years.
The survey itself consisted of a 26-item questionnaire created by the team based on a few different psychological assessments. The survey also included some demographic information, such as when the person was diagnosed, what (if any) autism-related services they received, and for how long. Participants then responded to the 26 questions based on how they related to the present and in the past 4 weeks with likert scales to assess severity of the symptoms. There was also a section for participants to write in any other information they wished to share. Scoring methods and measurement were also developed by the research team, and based on the DSM-5 criteria for PTSD, which are adjusted for developmental levels at or below age 6 and after age 6.
The Findings and conclusions
According to their surveys, of the 460 participants, 46% met the threshold for PTSD, with extreme levels recorded for 47% of these respondents. Thus, it was declared that any participant of any age was 86% more likely to develop PTSD symptoms when exposed to ABA than those who weren’t. The responses indicated that 41% of caregivers reported using ABA for their autistic children, whereas 11% of adult autistic responders reported having been exposed to ABA. They also reported a correlation between severity and time spent in ABA; that is, the longer a participant reported being in ABA, the more severe they reported their symptoms. Thus, Kupferstein concludes that for every increment of 5% of a person’s life that they spend in ABA, the higher the chance of PTSS and the more severe their symptoms. To put this in perspective, Kupferstein offers the following:
“The average 18 month-old autistic child who is exposed to 40 hours of ABA per week will be expected to surpass the severe threshold of the PTSD criteria within 6 weeks, given 1.5 percent lifetime exposure. The average 3 year-old autistic child who is exposed to 20 hours of ABA per week will be expected to surpass the severe threshold of the PTSD criteria within 5 months of ABA exposure. The average 5 year-old autistic child who is exposed to 10 hours of ABA per week will be expected to surpass the severe threshold of the PTSD criteria before their 7th birthday.”
In addition, the survey looked at overall satisfaction with ABA and how successful participants felt it was for them. Unsurprisingly, caregivers tended to rate higher levels of satisfaction than adults who had received at least 1 month of ABA services. Caregivers also reported more success with longer exposure times than autistic adults.
As with most studies, participants could withdraw at any time. Of the total participants, 50% of autistic adults and 61% of caregivers completed the entire survey. However, the study team noted “a significant disparity in survey abandonment ABA-exposed respondents and non-exposed controls.” What they found was that 92% of those who abandoned the survey were non-exposed, with the remaining 8% being exposed. Similar numbers were found among caregiver respondents, with 23% of the caregivers who abandoned the study having exposed their children to ABA, and 77% having not exposed their children to ABA.
Now let’s pick it apart, like proper scientists
Let’s just start with the most obvious: Online surveys. This is not to say that qualitative evidence isn’t valid. It absolutely is. The problem lies in the anonymity and complete lack of control over who you are talking to on the internet. Literally anyone could claim to meet the criteria to participate and there was absolutely nothing in place to vet them. Unfortunately– and yes, this is treading on dangerous ground– that does include self-diagnoses.
Before you cancel me, I want to clarify that self-diagnoses are valid. There are too many barriers to a formal diagnosis, and I’ve personally never met someone who was self-diagnosed that I disagreed with their conclusion. The problem though is that we’re dealing with an academic circle, an academic circle in which there are a group of people who have made it their life goal to invalidate claims of harm done by ABA. Unfortunately, these same people do not usually accept self-diagnoses. Why do we care what they think? Because they are causing extreme damage to the field and its victims. You can’t leave them with such an easy counter argument. It just seems like they could have found someone to validate diagnoses as part of the study. Also, what an amazing service to offer someone for their emotional labor.
The 243 adult autistic participants in the study also had an average age at diagnosis of 25 years. It feels icky to say, but the likelihood of people with such a late diagnosis having experienced ABA, especially the way Kuperstein is aiming to expose, is just not very high. Consider the type of information someone with a late diagnosis would be accessing too. With an age range of 18-73, the internet was most likely the source of support as a newly diagnosed autistic person for most of them. I find it hard to believe that anyone going into autistic spaces looking for support would ever sign up for ABA. Even the few pro-ABA autistic voices out there are usually rapidly and vehemently squashed. Kupferstein fails to even acknowledge this potential flaw. Now is it possible that they did experience ABA? Absolutely. The chances aren’t 0, they’re just not high, and as the leader in this study, it seems like one would want to cover that base and find some way to validate their participation in ABA.
In acquiring participants for the study, Kupfersten also didn’t seem to offer any subtlety in what conclusions she was hoping to draw. The survey was aiming to find PTSD symptoms in autistic people who had experienced ABA. While that is a valid if not noble endeavor, putting it out there, on the internet of all places, is likely to attract a very specific audience. Thus, the study was more likely to become a self-fulfilling prophecy than a genuine sample of ABA’s effect on autistic people. The other uncomfortable truth is that there are people out there with a vendetta against ABA who have no experience or real knowledge of it. Again, before you try to take this out of context and cancel me: Criticisms of ABA are valid and the experiences of people who have suffered abuse are real, should be believed, and should be taken seriously.
But can’t pretend that chronically online isn’t a thing, that parroting isn’t a thing, that drawing conclusions from less credible sources isn’t a thing, especially on the internet. Discussing these things is often a pointless and argumentative addition to a serious conversation. In this case though, it’s relevant. Kupferstein was attempting to provide evidence-based information to the debate over ABA’s overall effects on autistic people, and she quite frankly half-assed it. You simply can’t treat academic information like an argument on social media. There needs to be a lot more effort and thought. While she may have had a genuine and well-intentioned goal of validating actual victims of trauma from ABA, you can’t assume that every participant is going to have that same goal. Liars exist. They may have reasons, they may even feel the ends justify the means, but you can’t pretend they’re not out there, and not more than willing to fill out your survey.
Despite all of that, even if the methods were rock-solid, the participants gathered from a diverse group, vetted, officially diagnosed by a qualified professional, the conclusions were that 46% showed PTSS. That’s less than half. Again, I’m not saying this invalidates claims of ABA’s harm to the autistic community. I’m saying 46% is an awfully big reach to claim that people receiving ABA are 86% more likely to develop PTSD, or that anyone can “expect” symptoms at any age with any amount of hours per week. Perhaps autistics of a certain age may be at risk of such effects with x number of hours per week, but Kuperferstein provides absolutely no evidence to support such a confident causal relationship.
Who is Dr. Kupferstein?
Well, she has a really cute website with tons of information about her, her credentials, training, etc. She describes herself as a “psychologist, autism researcher, autistic parent of an autistic child, and piano pedagogy scientist.” Her resume is also available, including her schooling. She holds a masters of arts in transformative leadership from the California Institute of Integral Studies and a Ph.D in psychology from Saybrook University. These caught my eye, because I had never heard of Integral Studies. Cue hyperfocus rabbit hole.
The California Institute of Integral Studies, or CIIS, describes Integral Studies as a combination of “Western, Eastern, Indigenous spiritual and intellectual traditions for broader understanding.” They describe their methods as fostering more open thought as opposed to the stuffy, traditional education settings that just basically tell students what to think. The school of psychology in particular focuses on “the clinical efficacy of contemporary psychodynamic psychotherapy.” When I tried to dig a little deeper into the science of integral studies, all I could find was CIIS. They seem to be the only place that does this.
As for what psychodynamic psychotherapy is? According to Psychology.org, it’s based on Sigmund Freud’s work, and focuses on the connection between a person’s past experiences and their current mindset. This shouldn’t be too unfamiliar from a behavioral standpoint. It’s a type of therapy in the psychotherapy toolbox that some consider effective and some don’t. Digging deeper into it would be beyond the purpose of this article.
Looking a little more into the CIIS clinical psychology approach though, I came across this:
In a field dominated by short-term manualized treatment, a dogmatic adherence to behavioral approaches, and a view of psychology as outside of social, cultural, and political factors, our program stands out from the rest. We believe in the importance and efficacy of a depth-oriented approach to psychotherapy. As a non-APA program, we are not limited by the American Psychological Association’s constricting and narrow view of what makes a good psychologist, and the pressure in the field to take up a behavioral medicine approach.
California In Institute of Integral Studies Clinical Psychology Dept
So the entire program is anti-behavioral science. This, along with the buzzwords and mildly appropriating language has me a little concerned about the quality of this degree.
But let’s move on to the Ph.D. from Saybrook University. Saybrook University focuses on their psychology degree on humanistic psychology. What is that? Cue hyperfocus rabbit hole #2.
According to Wikipedia, humanistic psychology was described by Abraham Maslow as the answer to Freudian psychology vs. B.F. Skinner’s behavioral science. It’s related to transpersonal psychology, Maslow’s dubbed “fourth force in psychology,” which focuses on the “spiritual and transcendental aspects of the human experience (Meridian University).” There’s a note at the top of the Wiki article though saying that the neutrality of the article has been brought into question, so let’s move on to a hopefully more credible source.
The Michigan School of Psychology describes it as a method in which the whole individual is taken into account, a method it describes as different from psychoanalysis and behaviorism. They describe it as answering a “need for a new paradigm that celebrate[s] the inherent value and dignity of human beings.”
Full disclosure: I find the idea of transpersonal psychology quite fascinating. I am not so rigid as to believe that modern science has every answer there ever will be, and I’ve had enough weird experiences to take into account some less-than-scientific thought processes, but those don’t go in the academic journals. Those don’t even go in this blog. Those don’t make statements about the risk of serious mental illnesses and their potential causes. As interesting and compassionate as it may sound, “whole person,” “celebrating inherent value,” these are all buzzwords and can be interpreted in a myriad of different ways, and like all things, subject to interpretation through our own cultural lens. It’s no more inherently dangerous than any other field that works with vulnerable populations, but to pretend it’s inherently safer is intellectually dishonest. I would personally love to learn more about transpersonal psychology, but until there’s some more solidly defined evidence about what it does and how it’s effective, I’m not about to use it as a basis for clinical decisions. Doing so seems dangerous, and Kupferstein 2018 provides a pretty harsh demonstration of this.
Autistic victims deserve better than this study
ABA desperately needs actual research on side effects, anxiety, stress, and yes, proper evaluations for trauma and PTSD. There needs to be more collaboration between qualified psychologists and BCBAs. This includes BCBAs swallowing their egos, stop acting like all of psychology is “mentalistic bullshit,” and start improving our understanding of development, clinical psychology, and competent, trauma-informed care. There also needs to be more respect for the real needs of traumatized people than to simply collect the thoughts of randos on the internet.
What made me the most angry about this study and the way it’s been hailed as some final blow to ABA, is the fact that it made no effort to provide solid, air-tight evidence to their claims. There are BCBAs out there literally saying that any claims of ABA causing abuse are “misinformation,” and are denying the experiences of real victims. Half-assed “studies” like this only harm the very people they are trying to defend. ABA cultists already claim that anyone critical of ABA has no idea what they’re talking about, and spreading this joke of a paper around only fuels that fire. All studies need to be read and thought about critically. All studies need to be combed through for biases, and those biases need to be called out and addressed. We are all human, we all have biases. One of the beauties of the internet is the ability to bring together a variety of diverse voices that can help break through those biases and hone our knowledge.
The internet can also provide a place to make academic works more accessible, present marsupial included. There are spaces where practitioners are trying to do better. Before sharing something like this on a platform with thousands if not millions of followers, maybe find a trusted person who is able to help you fully understand what you’re reading. That’s not an insult to intelligence, that’s a simple fact that not everyone has the same training, and academic journals are aimed solely at those with the relevant training. I wouldn’t pick up an article on physics, form an opinion based on it, then spread it around on here without running it by someone who understands physics. The internet gives you plenty of access to nerds like us. I’m sure someone would be willing to help, if for no other reason than to prevent actual misinformation from spreading.
It sucks that the onus is on the marginalized groups to have their shit completely together while the ones in power get to piss all over the place with 30 pages of flawed research and somehow get away with it. It’s not fair, but it’s unfortunately how egomaniacs work. The tighter the evidence to the contrary though, the dumber the other side is going to look. If you have one source that’s truly rock-solid, you win that much harder. Do better.
Resources:
California Institute of Integral Studies. https://www.saybrook.edu/
Chamlou, N. (2023, Mar 22). What is Psychodynamic Therapy? Psychology.org. https://www.psychology.org/resources/what-is-psychodynamic-therapy/#:~:text=Psychodynamic%20therapy%20(PDT)%20originates%20from,childhood%20%E2%80%93%20and%20their%20current%20mindset.
Humanistic Psychology (2023, Oct 8). In Wikipedia. https://en.wikipedia.org/wiki/Humanistic_psychology
Humanistic Psychology, Michigan School of Psychology. https://msp.edu/about/explore-msp/humanistic-psychology/
Kupferstein, H. Henny Kupferstein. https://hennyk.com/
Kupferstein, H. (2018). Evidence of increased PTSD symptoms in autistics exposed to applied behavior analysis. Advances in autism. 4(1), 19-29.
Kurtis Conner. (2022, Aug 26). Chronically Online. YouTube. https://www.youtube.com/watch?v=Zh_m3OzUhcY&ab_channel=KurtisConner
Saybrook University https://www.saybrook.edu/
Transpersonal Psychology (2024, Feb 6). In Wikipedia. https://en.wikipedia.org/wiki/Transpersonal_psychology
What is Transpersonal Psychology? Meridian University. https://meridianuniversity.edu/content/what-is-transpersonal-psychology#:~:text=Transpersonal%20psychology%20is%20a%20branch,to%20growth%20and%20self%2Ddevelopment.