A Personal Aside
I read an article online recently that brought a rush of emotions. Ever since I stopped being a “research scientist” (but have I really?) I have been told by a number of people that I really need to pursue licensure as a BCBA to more fully reach my potential when working with autistic students in the classroom. This thought has always made me very uncomfortable, because it always seemed like just another arbitrary hoop to jump through. This post intends to elaborate on why I do not feel ABA is an appropriate therapy and why, with the latest news, I refuse to take part.
Now up front, I will state that I do not actually have any particular issue with ABA as a concept. A number of the methods they employ are things that I support wholeheartedly and even use in my classroom, specifically discrete trial training (DTT), elements of Pivotal Response Treatment, and Differential Reinforcement. However, I do take issue with the focus on punishers (positive punishment as well as the use of aversives). I take particular issue with how ABA gets implemented.
I will put my TL;DR here. I conscientiously object to being part of any organization that condones the active abuse of autistic (or non autistic) children: be it electroshock, fear conditioning, food deprivation, excessive restraint, or verbal/emotional bullying. I will never knowingly engage in that type of behavior, and I will work tirelessly to stop such abuses when I encounter them. What I will do is treat autistic children with respect and help them grow as people and citizens. I will nurture them and help them achieve their fullest potential. And I will do it in a way that leaves my conscience clear.
Trigger Warning: This post is going to cover a range of unpleasant topics regarding unethical treatment of autistic persons. The links and videos posted in this post are disturbing.
So what did I read…
I read this account of a self-proclaimed “escapee” from the Judge Rotenberg Center (JRC) on the RewardandConsent blog. This bothered me because I found out from this article from the same source and confirmed myself that ABA International (ABAI) approved of the JRC’s methods by allowing it as a sponsor for their annual conference by stating the treatment was aligned with the mission of ABAI. Note, to date the Behavioral Analyst Certification Board (BACB), the certification body for Board Certified Behavioral Analysts (BCBA) has turned a blind eye to the mistreatment, and explicitly have provisions in their ethics policies that allow these draconian punishments so long as properly consented by parents.
For anyone who has not seen it, here is an example of treatment given autistic persons being “educated” at the JRC. This example is a young man being shocked 31 times for not removing his coat promptly when asked. Warning, video is graphic.
A lot of you will see this and wonder what exactly is happening and why. Simply stated, a boy is being punished for disobedience. He did not do what he was asked when he was asked. He did not comply. To ensure his future compliance, he was shocked 31 times.
My interpretation comes from my research. Early in my career I was working with rats and needed to study the part of the brain associated with fear responses (the amygdala). To study this, I placed rats into a box with a metal grid floor. I played a tone and then gave them a very small (1/4 milliAmpere) electric shock. The rats screamed and jumped and attacked the cage. They were terrified. They attacked me the second I took them out of the cage. I felt like a class A jerk. I felt like I was abusing them, because I was. We call this type of conditioning fear conditioning.
Fear conditioning is a powerful tool, but it has several critical flaws. 1) Learning by fear can be fast, but it doesn’t last. Conditioned fear extinguishes FAST unless the aversive stimulus is re-introduced. If I pair a tone and a shock 20-30 times, the tone itself will only elicit the desired fear behavior for a few minutes. I can reduce the amount I shock them to get the same fear response, but even this will fade in time. 2) Over time, to get the same bang for my buck, I have to crank up the amperage on the shock device. The rat’s natural analgesia and toughness compensate to their new reality (shock is part of their life now), so I have to be more brutal in my methods. And 3) I have to shock an animal. It is bullying, it is torture, it is just not right. It is mean. I moved beyond these questions as fast as I possibly could and have not returned to aversive conditioning since.
When we apply this to humans, we call is aversion therapy (Wikipedia link). The same limitations apply. We have to up the ante every single time to get the same effect. This means that not only is the electroshock unethical (according to me), it doesn’t work (according to science). It makes those using it feel as if they are in control, but the behavior will not change. The change will extinguish unless the shock is reapplied on a regular basis. And yes, this means you have to look for excuses to shock the person to keep the fear response fresh. Oh and it should be noted that once the autistic person is no longer in the situation or environment where the punishment occurs, their behavior will return to “normal”, because aversion therapy (like fear condition in animals) does not lead to generalized learning or true lasting behavioral modification.
That gets me to my next point with the JRC and their interpretation of an ABA concept called Behavioral Rehearsal Lessons (BRL). The reports from individuals that resided at the JRC reported they were scared to induce screaming, defense response, etc. Some of the methods used to induce screaming included restraining autistic persons and threatening them with knives and physical harm/death until they screamed-at which point they were punished for their target behavior (e.g., screaming, raising an arm in defense, etc.). Obviously, this would be traumatizing to anyone. But it is considered a legitimate therapeutic approach at the JRC to help these autistic people be “better”. As I will quote further down, sometimes cruelty is justified by practitioners because the victim is autistic, so we call it therapy.
My last point in this section is a major point, but it will pale in comparison with what I stated above. There have been some “leaked” data sheets from he JRC that further suggest they use other highly punitive systems. But before I get to that, I have to define a token economy. A token economy is a system whereby one earns tokens or points toward a preselected reward for their positive behavior. When implemented correctly (and done the way ABA defines it), these tokens can be earned, but never lost. It is a purely positive system. The only punishment in a token economy is the lack of receiving a token. So the primary motivating force is the quest for a reward (or accumulation of tokens towards a desirable goal).
The token system used at the JRC appears to be a point system, but they bastardized it and implement it incorrectly. They reserve the right to fine (take some arbitrary number of points) and to employ a full loss of privilege (LOP) system (take away ALL your points). This suggests to me they only have the points so they have something to take away later. This is bullying behavior, because it taunting and manipulative. Think of this scenario: you work at a job that pays you for every good thing that you do. However, your boss and his coworkers reserve the right to notify you that you broke a rule and they are going to fine you. If this was a large infraction (or in some cases not so large), they reserve the right to take away all the money you have been saving and they will make you work for free until you earn back the right to earn money again. Does this sound fair? This is exactly what the JRC is doing.
Attached below are images of documents from the JRC. You will notice the punitive system in place. Also note the “Lose all Points”. A number of these have GED-4 written after it. That is the shock. So not only can these people with autism lose all points for the behavior that the JRC deems “bad”, they also get shocked. Yes, e-l-e-c-t-r-o-c-u-t-e-d! There are also restraint conditions written after the GED-4 codes. I can tell you as a teacher, most of these “shockable” offenses are totally outrageous. It is nonsense that stimming (wave hands in front of face), tic-like movements, touching telephone, refusal to acknowledge staff within 5 seconds are not only a lose-all-token offense BUT a shocked offense as well!
Here is an example food restriction schedule for a former patient of the JRC. This food restriction was deemed necessary to increase their compliance to edible reward.
These methods are abuse and there are wrong. Furthermore, this is not ABA. The ABAI and BACB should not condone these behavior, but they do. I want to note here that if parents treated their children like this, I’m under obligation to report it to Child Protective Services.
Original images Here.
Extension to the larger ABA community
So I am in no way insinuating all of ABA engages in direct physical abuse of children, but it is also not a rarity either. It is not a stretch to see the minor abuses that make up standard ABA therapy and how these minor abuses can easily escalate:
This video was posted by a mother to show the world just how good her ABA therapist is working with her difficult, profoundly autistic daughter.
What makes the above video heartbreaking is the fact that the therapist, in trying to use Discrete Trial Training (DTT) is going out of their way to tease and torment the girl with a reward she is unable to obtain. The girl cannot do it, so she tries to escape, but is drawn back. Later, the therapist tells the little girl, “We can’t let you win”. Are you kidding me? The child is crying, clearly unable to do it, so she is restrained. She melts down. She is told to “Just try” while efforts to communicate are ignored. This is bullying. This is abuse. This is wrong. This is not justified. Ever.
Discrete Trial Training, as it supposed to be implemented, is not a compliance based method. It is not “I show you reward and you do what I tell you to in order to get the reward”. Discrete trial training is based off classical and operant conditioning experiments. In these experiments, animals (or people) are rewarded for successful approximations of the target behavior. If I want a baby to come over to me, I will first reward them when they look at me. Then, on the next opportunity, I will reward them for initiating a movement toward me. Then, I will reward them for making it 1/4 of the way to me. Then 1/2, then 3/4 and so on… This is called shaping. We start with giving lots of support (reward early at smallest hint of what we want) and we fade that support back as the child is able to master the task.
In fact, the therapist is completely failing and doing DTT wrong. The goal in this scenario is to shape the child to speak to receive a reward. However, there is no shaping going on in the video. The child attempts using multiple modalities to signal they want the reward. They also attempt to make appropriate mouth noises to receive the reward. The therapist ignores these efforts in quest for the final goal-that the little girl says “mama” to receive a gummy bear. In the end, there was an utterance that if I want to believe it sounds sort of like a “mama” and the girl gets the reward. But, and I speak from experience on this, the girl will remember the battle to get there and how aversive it was much more profoundly than the single gummy bear. The fight wasn’t worth it and in the end the little girl learned nothing.
So here is how I would approach that situation. It is clear the girl is non-communicative and has at best rudimentary speech abilities. I would start by rewarding at high rates any vocal utterance. Then any “mmmmm” echo of what I utter. Then reward any spontaneous or promoted “mmmm”. Once mastered (80% of the time the girl repeats “mmmm” to a prompt, I would move to “ma”. Then “mama”. This takes a long time (maybe months to years). All shaping takes time, patience, love, and consistency. But that is how we learn, through positive, repeated effort. DTT just formalized the process with regards to their interventions. Importantly, at about 1 min in the video, the little girl tried to end the session by walking away. I would let her. After a very brief break, I would re-introduce a reward and initiate a new trial. But I would be focusing on obtainable tasks. Watching this video, I am still not convinced the little girl was actually able to say “mama” regardless her desire to do so.
Stated another way (quoted from the Unstrange Mind blog), here is another interpretation of the session:
The therapist showed her candy, then withheld it from her while making lots of confusing sounds at her and leaving Isabella to try to figure out what the heck was going on, what was expected of her, and why she could see but not get the candy. If I dangled candy in front of a child but refused to give it to her and made her cry with frustration, you would call me a bully and say I was taunting the child and that I should stop making the little girl cry and just give her the candy, right? But because Isabella is Autistic, some professionals believe it’s not cruel; it’s therapy.
There are so many important things to say about this short video of a therapy session. Something really important, though, is that this is not in line with the ways language acquisition occurs. What is happening in this therapy session is closer to the way animals are trained to perform tricks. When I was a pre-teen, I taught my standard poodle to shake paws. He never understood what a handshake meant to me — all he ever knew was that it made me very happy if I put out my hand and he put his paw in it. And he liked to make me happy, so he learned to shake paws very quickly and would do it every time I offered my hand. And I never used food to teach him, just affection. And I never made him whine with confusion or behave in a distressed manner.
Now, I don’t mean to compare an Autistic child to a dog. That would be demeaning. But look at this speech therapy and tell me that Isabella is not being trained like a dog to mimic a behavior she doesn’t understand any more than my dog understood a handshake. In fact, Isabella is being treated far worse than most dogs are treated, because she is in real distress as she tries to get the candy and has no idea what is going on or why she keeps getting teased with candy. This is exactly the sort of trial-and-error behavior shaping you see when people train monkeys or bears to perform in circuses. It assumes that the subject being trained is incapable of understanding anything and must be bullied, badgered, and tempted until it randomly performs the act (or makes the sound) and then operant conditioning is applied to strengthen the desired response. This is not speech therapy, it is monkey training and, my apologies to Isabella’s parents, but it is painful to watch. This is not a therapy that respects Isabella’s personhood or addresses her needs.
ABA as compliance training
My final complaint is a universal issue with ABA as practiced. It is a compliance based therapy. By compliance, I mean that when the therapist tells you to do something, albeit stupid, meaningless, or impossible, you do it. You obey. You comply. You are not given a choice. Compliance training is conditioning children to do whatever an “authority” figure demands no matter how unpleasant it may be.
Think about what this means. When a therapist is working with a child, the child is following orders. Much like the quote from Unstrange Mind above (as well as here). We make demands of children with autism so they fit the archetype we want them to. We demand they make eye contact. We demand they sit 100% still and don’t fidget. We demand 4 legs of the chair on the floor with hands on the desk in class. We demand they fluently use pronouns in conversation, even when it doesn’t make sense to do so. But these are their goals. They do not have a choice. Well, they do have a choice: (1) comply and maybe have a bit of fun (or lack of anxiety for a few minutes during a break) or (2) fight back and be punished. If the child indicates they have a good reason for engaging in a harmless but odd or quirky behavior, they are taught that they are wrong. In fact, they are taught that any individuality is wrong. And it is to be shunned.
I fear the repercussions of this compliance. An over-reliance on compliance training as a primary therapy in autism will likely result in a epidemic of autistic adults being taken advantage of by sexual predators, predatory lenders, car salesman, property managers, etc. They may know that the system is wrong, but a lifetime of conditioning has taught them they can only be happy and at peace when they do what others say.
Trigger Warning: The section below entails refers to sexual abuse of autistic and other disabled individuals. If this is disturbing to you please feel free to stop reading here.
Earlier this year I was reading statistics and found some that dropped my jaw to the floor. I will quote a section of one of the documents I read (I also dug into the actual references they cited, and they checked out. Full Document). Emphasis mine.
More than 90 percent of people with developmental disabilities will experience sexual abuse at some point in their lives. Forty-nine percent will experience 10 or more abusive incidents (Valenti-Hein & Schwartz, 1995). Other studies suggest that 39 to 68 percent of girls and 16 to 30 percent of boys will be sexually abused before their eighteenth birthday. The likelihood of rape is staggering: 15,000 to 19,000 of people with developmental disabilities are raped each year in the United States (Sobsey, 1994).
People with developmental disabilities may not realize that sexual abuse is abusive, unusual or illegal. Consequently, they may never tell anyone about sexually abusive situations. People with and without disabilities are often fearful to openly talk about such painful experiences due to the risk of not being believed or taken seriously. They typically learn not to question caregivers or others in authority. Sadly, these authority figures are often the ones committing the abuse. Many special education programs have encouraged students to be compliant in a wide range of life activities, ultimately increasing the child’s vulnerability to abuse (Turnbull, et.al., 1994).
One narrative of exactly these life experiences can be found at Unstrange Mind. It is a sobering and courageous narrative of abuse. I highly recommend the read, but it is very disturbing.
A post by a parent who was considering the ill effects of compliance training put her autistic daughter’s rights very articulately so I will let her words make this point:
…I will never allow anyone to force my child to be compliant. I don’t care what her cognitive abilities are, unless she is in danger or endangering someone else, she gets to say, “no”. And like anyone else, there are consequences to saying no. Sometimes the consequences are negative–like not getting the immense satisfaction of popping bubble wrap. And sometimes they are good–not subjecting yourself to abuse.
If not ABA then what?
I do not have a clear solution to how we fill any gap left if and when ABA goes away. To be honest, my experience with my twin brother and other autistic people has taught me that there is no magic bullet. Each child has a unique collection of challenges. As Linda Brandenburg put it, “If you’ve met one child with autism, well, you’ve met one child with autism”. So lets stop acting like autism is an easy diagnostic “box” we can fit kids in.
My opinion is that we need to think the same way with our solutions. There is no reason to favor any single approach over any others. Caring therapists and parents can work together to develop individualized plans to help give their kids the head start they need. Options are already available that can be combined as needed to help autistic kids that need the boost. These include the Early Start Denver Model, Rapid Prompting Methods, TEACCH, PBIS, and so on.
There are options out there. It just falls upon us to each find that which works best for us and ensure our child’s growth and happiness!
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