“Autistic adults vs. ABA people” is one of the most common neurodiversity themes. An introduction, if you’re unfamiliar:
ABA defenders often respond to criticism with No true Scotsman arguments. The criticisms don’t apply to the modern, good ABA they’re doing or having done to their children. It’s true that I have no firsthand experience of ABA, but I can consult the ABA literature itself.
I went ahead and bought Ethics for Behavior Analysts, the 2016 3rd edition by Bailey and Burch. This post will be a running commentary on it, like what I did earlier with an Early Start Denver Model book. It’s about the official, professional code of ethics for Board Certified Behavior Analysts (BCBAs). Lots of vignettes to consider, there because the profession itself considers these situations realistic and common.
I was surprised to find that the books opens in a confessional tone. One of the authors relates a key grad school experience from the 1960s. Someone in an institution was hitting their head a lot, and their first instinct was to make charts about it. They went to their advisor:
“I’m observing a subject who engages in self-destructive behavior,” I began. “He hits his head 10 to 15 times per minute throughout the day. I’ve taken informal data at different times of the day, and I don’t see any consistent pattern,” I offered. Dr. Meyerson let me go on for about 10 minutes, nodding and occasionally taking a puff on his pipe (smoking was allowed everywhere in those days). Then he stopped me abruptly and, gesturing with his pipe, began to ask me questions that I had never thought about. Did I know my “subject’s” name? Did I have permission to look at this medical record? Had I discussed this case with any of my graduate student colleagues or shown the data in class? I had no good answers to any of Dr. Meyerson’s questions. I wasn’t thinking of my “subject” as a person, only as a source of data for my thesis. It never dawned on me that “Billy” had rights to privacy and confidentiality and that he needed to be treated with dignity and respect, not as just another “subject” to help me complete a degree requirement. As it turns out, Dr. Meyerson was ahead of his time in grilling me with ethical questions that would not actually come up in legal circles for another ten years.
In other words, ABA came from an academic culture with pervasive disrespect for autistic people. In the 1970s, there was a scandal involving an institution that was systematically abusing people, in a Stanford Prison Experiment kind of clusterfuck. Apparently it’s a good thing that that happened:
In retrospect, the horrific abuses at Sunland Miami in the early 1970s were probably necessary for half-baked, unregulated behavior modification to evolve into professional, respect, behavior analysis. Without the abuses, there wwould have been no Blue Ribbon Committee formed to think seriously about how to protect developmentally disabled individuals from systematic abuse of behavioral procedures. The headlines resulted in intense scrutiny of a treatment mode that was in its infancy and that needed guidelines and oversight. The pain and suffering of the individuals with developmental disabilities involved in the abuses amplified the need to think clearly about the ethics of treatment.
Although it would have been easier to prohibit behavior modification altogether, the Blue Ribbon Committee was convinced by its two behavioral advocates, Drs. May and Risley, that a better alternative was to establish strict guidelines for treatment and to set up an infrastructure for oversight involving community citizens who would bring their values, common sense, and good judgment to evaluate behavioral treatment strategies on an ongoing basis.
In other words, ABA gained respectability through corruption, just like when chemical industry lobbyists work for the EPA.
There’s a vignette to illustrate the “do no harm” principle. On a surface level, it’s humane:
Herman was referred for his combative behavior when being guided toward the shower each morning in a residential facility for the developmentally disabled. He was reluctant to take a shower and showed his displeasure by pushing and shoving the staff and trying to escape. This resulted in at least two staff injuries, one in the shower itself that left the training instructor unable to work for two weeks. Clearly, this was a case of aggressive behavior that needed treatment. In light of the danger involved, the staff strongly recommended restraint as an immediate consequence for Herman’s refusal to cooperate with his morning bathing routine. The program was nearly implemented when the behavior analyst inquired about how long this problem had been going on. The answer turned the treatment in a totally different direction. It turned out that Herman had previously been allowed to take his bath at night and was assisted by an aide who helped him by filling up the tub, getting just the right temperature for the water, providing his favorite towel, and in general recreating the conditions his mother used at home. When this staff member quit the facility, it was determined that Herman should take a shower in the morning, which, as we came to understand, he detested. Although it was possible that a behavior program could have been written to essentially force Herman to take a morning shower, it was determined that this would cause more harm than good. The ethical solution for this case was to train another staff member to reinstate Herman’s evening bath.
Notice the concession that the behavioral treatment program works by “essentially forcing” Herman to do things, using aversive consequences.
The sentence “Clearly, this was a case of aggressive behavior that needed treatment” is also concerning. How is it that the question about how Herman stayed clean before is the LAST question instead of the FIRST question? They’re conceding that something in the culture encourages the view that autistic people are “aggressive.”
The story is also framed like it’s an example of autistic inflexibility, volatility, and childishness. They acknowledge Herman “detests” showers, but nobody asks why. First of all, regular people not living in institutions are allowed to prefer baths or showers, and they don’t all agree about whether morning or evening ones make more sense. Maybe, for Herman, the bath is something physically soothing at the end of the day, which calms him down enough to sleep after a long, stressful day. That’s a sensible routine, but nobody thought that mattered.
The entire vignette goes without considering that autistic people have sensory processing issues. Getting blasted with water of the wrong temperature is stressful. Water comes out of some shower heads with enough pressure that the droplets feel sharp and painful. So they’re bothering this poor man in the morning to strip him naked and then force him to endure something uncomfortable across most of his skin. Perfect way to start the day! The vignette never considers that Herman is acting in legitimate self-defense. It still presents him as a dangerous pain in the ass, for resisting treatment none of them would accept in their own lives.
Even though the vignette illustrates doing the right thing, it’s for the wrong reasons. As written, it allows self-congratulation. They’re so nice, letting Herman take a bath like his mommy let him at home!
Quite a telling sentence, don’t you think?
Although it is not a “behavioral” term, low self-esteem seems to capture the essence of a person who has not been afforded dignity.
The field itself doesn’t have the language to express the problem with undignified treatment of people. To be fair, the next section says nothing I can really disagree with about how to respect people’s dignity. But then the section ends like this:
Clients should be addressed by name in a friendly fashion using eye contact and a pleasant smile–the kind of treatment you expect when you are receiving services from someone in your business community.
As a rule, autistic people don’t like eye contact. They have the right intention, but they seem to miss something about our needs.
Again, the conclusion of the vignette is reasonable:
Thomas was a young man with developmental disabilities who was referred for his aggressive and sometimes self-injurious behavior. The incidents seemed to occur in the afternoon, when he returned to his group home from his sheltered work setting. It often took two staff members to drag him from his bedroom to the living room, where there were group activities. Before being taken to the living room, he had to be dressed, because he was frequently found sitting in his underwear on the floor rocking and listening to music on his headset. After some considerable investigation and discussion with staff, family, nurses, and social workers, the behavior analyst prevailed in his position that Thomas should be given his choice of activities in the afternoon. He was to be offered the option of joining the group each day, but if he chose to stay in his room and listen to music, his choice was respected. Given this resolution, there was no need to develop a behavior treatment program, because the aggressive and self-injurious behavior ceased to exist.
Again, there’s a coercive environment, where the staff are melting someone down with no insight into that fact. It’s like nobody has any idea what being autistic is like, and the client’s reactions are always assumed to be irrational and wrong. I’m an adult who lives alone and works at home, and I’m wiped the fuck out after work. All I want to do is find some techno to play on repeat and rock back and forth. Sometimes I’d do something social right after work, but I’d generally need a day or two of advance notice, and it would involve pushing through some discomfort. For that matter, the BCBAs on duty probably go home and veg out in front of the TV for a while. What strikes me is that an army of professionals are devoted to taking that away from the guy. They know what’s best, and apparently that’s pushing him beyond his capacity for social interaction for the day. He’s being punished for correctly self-regulating. It’s a tough case, dealing with that kind of aggression!
The vignette is in the book because that kind of thing happens to people. They acknowledge it where they don’t expect autistic people to look. In the next vignette, someone is on meds that make him groggy in the morning. He starts the day fighting staff when they drag him out of bed. One staff member never experiences this because she gently wakes him up over the course of 30 minutes, like she would a family member.
When I do a Google News search for “autism”, a lot of the stories are about insurance fraud, when I think about it.
It seems that cases similar to this are cropping up all across the country as agencies scramble with long waiting lists, too few qualified staff, and too much revenue at stake. Seemingly invisible decisions such as doubling up on clients but billing for one-on-one therapy reap great benefits and go unnoticed by nearly everyone except for the sensitive and ethical behavior analyst.
So that’s what it’s like out there, I guess.
Most behavior analysts entered this profession because of a strong desire to help people. For the most part, they were unaware that taking on responsibility for monitoring and maintaining ethical standards was a part of the package.
What?! They expect to help people, but they’re surprised that that involves thinking about right and wrong. Apparently it doesn’t come up very often…
As a behavior analyst, you can expect to encounter somewhat complex ethical issues a few times per year.
It is said that autistic people have simplistic, black-and-white thinking.
Here, they seem to express contempt for autistic people because we trust what they’re saying and offer to help. SRSLY.
One theory says that because people so commonly use evasive tactics rather than telling the truth, they are suspicious of other people’s explanations. At the other extreme, there are also plenty of people who can’t read your subtle signals and will try to help you overcome every lying excuse you can offer.
That’s not the way to be pro-social. American culture has paranoid tendencies.
Next let’s discuss the fun topic of “aversives.” What a misleading statement this is!
It was only only much later that some poorly prepared and insensitive behavior analysts would run into ethical problems, creating the scandals described in Chapter 1.
The ethical problems obviously go back to Lovaas, the founder of ABA and the Feminine Boy Project. Other people have already done the work of finding horrifying Lovaas quotes, etc. The authors are aware of that movement:
An “anti-aversives” movement began and still exists that has portrayed our field as prone to the use of punishment, although we have long since passed into another level of professionalism. As happens in many fields, some practitioners seem to become frozen in time with regard to their skills. It is possible even now to run into someone who got a PhD in 1975 who has not remained current with the trends in the field. Code 1.03 was meant as a wake-up call to such individuals for them to get back in touch with current standards before they hurt innocent people and damage the reputations of legitimate, up-to-date behavior analyts.
That’s a non-denial denial. They’re conceding it happens, but it’s just not officially endorsed for PR reasons. I think they’re also using the words “aversives” and “punishment” in a narrow, legalistic way. The vignettes above describe situations that involve, essentially, staff picking fights with autistic people over bullshit. That’s highly aversive, but would it be recorded in the BCBA’s notes as punishment? Or would they be working on their Differential Reinforcement of Other Behavior or whatever, with something else on an FR1 schedule and the frequency of “aggressive outbursts” as the dependent variable? They’re still forcibly dragging someone around, punishing them for listening to music alone in their rooms. There’s obviously not a sensitive, ethical BCBA around every time to put a stop to it. So “ABA”, in practice, participates in these abuses.
The point about the PhD stuck in 1975, and the way that ABA presents itself as scientific and “evidence-based”, is ironic. ABA itself dates from right before the Cognitive Revolution in psychology. By explicitly leaving out mental explanations, directly in the professional code of ethics, the entire field has put its head in the sand some time in the 1970s. In mainstream psychology, the Age of Behaviorism is understood to be an overreaction to the Age of Psychoanalysis. What happened is that there was an important experiment that measured reaction times in a mental rotation task. Whoever it was showed that reaction times correlated with the amount that the figures were rotated with respect to one another. In other words, you could basically tell from the reaction times that people were rotating the shapes in their imaginations. By improving experimental methods, we actually could do rigorous experiments about cognitive things! ABA’s position on mental explanations was based on the best science available in the 1960s or whenever. We totally study things like working memory and attentional set shifting in rats and mice, in the meantime.
Isn’t interesting that, for regular people, the mainstream therapy is Cognitive-Behavioral Therapy, but for autistic people it’s Applied Behavior Analysis? Even psychodynamic therapy, i.e., psychoanalysis, has actual studies supporting it now. It’s covered by health insurance, just like ABA! But for autistic people, it’s like they think we don’t have minds, let alone depth! Just apply methods used to train animals…David Graeber has said that violence is the one way you can get someone to change their behavior without understanding anything about them.
These pioneer behavior analysts most often had no training in clinical psychology.
Sigh…I wasn’t exaggerating about the professional code, either:
In Code 4.01, it is clear the obligation of those who want to call themselves behavior analysts must remain conceptually consistent with the behavior analytic principles of our field (Baer, Wolf, & Risley, 1968; Miltenberger, 2015) and avoid appeals to theories other than learning (Skinner, 1953).
Many of the vignettes are about the dilemmas of dealing with families that are also using things like sensory diets, or quackery, or whatever.
We do not borrow psychoanalytic, theory of mind, sensory integration, or other theoretical concepts about the “causes” of behavior; we develop our own interventions based on behavior analysis research, and we are prepared to follow through until the client is discharged.
Ruling out whole categories of explanation a priori is a religious edict, not a scientific way of thinking.
What’s interesting to me is that, for normal people, the evidence shows it doesn’t matter what kind of therapy you do, as long as you have a good relationship with the therapist. Should we expect that to be different for autistic people? I did 3 different kinds, and they all seemed to help. Do the ABA folks have a scientific reason for thinking it’d be different for autistic people? Or do we just need a caring, helpful figure we connect with?