martes, 2 de noviembre de 2021

Working in the autistic childhood hell: Experience in the world of ABA.

The first time I worked with children on the spectrum was in 2017 at an ABA centre, also here in Canada, but in a “freer” context: at a summer camp, where the emphasis was on taking the kids to different recreational places in the city. Since it was a more flexible context, my impression of the paradigm was not THAT negative, but all that had been changing thanks to my curiosity to listen to the Autistic Community and this was reinforced when I started to work in an ABA/IBI center as a Behavioral Therapist.

The first thing I saw when I started training were two rooms, each with 4 to 6 therapists accomanying a child working at their desks. The materials were on the table, but so were a couple of folders full of instructions on how to work on the skills they were trying to reinforce. 

The format was as follows:

The name of the skill, such as responding to their name, with a code telling you the standard material you must work with; the multiple criteria for that skill to be interpreted as mastered - for example, that the child demonstrate the skill not only in over 80% of trials but also on the first and last attempt; the standard instructions of what you have to say and how you must organize the space; the hierarchy of prompts - for example, first with a partial physical prompt, and then with gestures - which you must match with an index card where you write down how many times out of the standardized number of attempts the child succeeds. The child's personality or interests are never considered, and when there are some recommendations to identify objects that the child would like, it was only to use them as bribes so the child will do the activities. The time you have to bond with the child is also standard, and ranges from 5 to 15 minute intervals.

Essentially, I felt like a customer service worker - alienated, with a list of criteria in front of me that I had to write down, and a script of the exact words I had to say. After that comes what really matters to them: the data. After each activity, a graph must be made (there are daily and monthly charts) that shows the "progress" of the child. Up to this point maybe you don't see much of a problem, and you may even think that it doesn’t sound so illogical, even if it's alienating for the child and for the therapist. However, it is in the practice where all this is transformed into a procedure that violates the rights of the children. 

First, of the 6 therapists I met I noticed immediately that the knowledge they had regarding autism was tremendously lacking.

They didn’t consider the socioemotional stage in which the child was in relation to them, and they constantly confused differences in sensory processing as "maladaptive" behaviors. They did not seem to understand the neurobiological processes of the child in relation to their neuroception and ability to co-regulate, and there was no knowledge of what the real objective of reinforcing those skills in a particular way was for that child and his context. The autistic child is seen as an accumulation of deficits that must be repaired through the repetition of predetermined commands; these commands are the same for everyone, and the only customization is in the number of attempts that must be made. Basically, it is alienating the child by giving him a script/pattern that they must repeat through trial and error. 

The first example of this was when I saw the obvious rejection of non-speaking children, who were given instructions as if they were animals.

The therapist only notes their individuality in order to identify objects that can be taken away from them, all in order to pressure the child into doing the activity. And when the child tries to interact in their autistic way, they are yelled at, rejected, or in the best case scenario, they inspire pity.

On my first day I met a young non-speaking boy, and the first thing I was instructed to do was to take his headphones away and use them to bribe him to do an activity. He was a young man - about 14 years old - who, being in an environment where the children around him were constantly going through moments of disregulation (mainly due to constant oppression from adults), clearly needed his headphones to make the world more bearable. Naturally, I ignored the other staff every time they demanded I take the headphones away. I had many discussions where I expressed to my colleagues that he needed his headphones, that they were necessary to eliminate that environmental barrier so that he would feel calm to learn; after all, there is no learning if you are in constant stress. They responded that what I was proposing was not functional, that he had to take his headphones off to listen to me, since that is the only way to make him functional in society.

That same child was also denied his AAC (Augmentative and Alternative Communication) system - either it was taken away so that he could "behave functionally", or it was simply left in his backpack. Only one colleague agreed with me that he needed to ALWAYS have access to it, because communication is a human right. In fact, the first thing the young man expressed to me when he got it back was that he needed to go to the bathroom, and that he wanted to go outside. I told him to go to the bathroom and not to worry. When he came back I explained to him, using his same communication system, that we should wait before going outside. That whole session he stayed by my side, holding my hand, gently touching my head, and hugging me until I had to go to work with another child in another room. Afterward, every time we bumped into each other in the hallway he would hug me, and in each of those hugs I felt his relief at being seen and feeling understood, really feeling human.

When I got home after that first day, I cried all night until I fell asleep. All the joy I had felt at being accepted so quickly into a centre where I could work with children on the spectrum was gone, and all that remained was the pain of having witnessed abuse and neglect. At that moment I realized that I had begun to work in childhood's hell, where children have 2–4-hour sessions to focus on changing who they are, where they are not even given the option to choose what activities they can do because the adults around them are so overwhelmed with taking metrics and making charts, that there is no room for a relationship. It is a Fordist paradigm that allows no room for individuality, much less compassion or bonding.

The next few days were much worse. I witnessed a colleague physically intimidate a little 3-year-old non-speaking girl by forcing her to look her in the eye, screaming her name in her face, and hitting the materials in front of her. At one point while I was being trained by her she asked me to sit on the floor in front of her, and without warning she threw the child toward me to check if, with that "incentive", the child had looked me in the eyes. She had, but with a face of fear and incomprehension about what was happening. The little girl collapsed and burst into tears. I stood close to her to support and co-regulate with her, and I began to argue with my colleague that we should remember that she's a little girl and that we moved her to an isolated and strange place. My colleague's response was to ignore me and, in a very inflexible way, repeat that "the girl has been here for 2 weeks, she knows she has to work” and to “let her cry, she can’t get away with it", excusing her actions by saying that there were colleagues who were much "stricter" than her.

After that I started to play with the little girl, following her interests, in order to bond with her and somehow ask her forgiveness for what had just happened. The girl responded with the deepest and most sincere sigh I have ever heard in my life. My heart broke into a thousand pieces again when I later watched the same girl, now in the common room, being forced by the same therapist to do a puzzle while physically restricting her movements. The little girl struggled, crying and screaming, throwing her arms out to the therapist and appealing to her humanity, a clear sign that she wanted to be hugged and held by that stranger who looked at her and rejected her with total indifference.

In that week I also saw how therapists made fun of the children's crying when they did not demonstrate compliance. How they shamed them and made fun of them by calling them "disgusting" when they ate by putting large amounts of food in their mouths - a sign that clearly indicates a sensory issue, but which the adults seemed to take as a personal offense towards them - forcing them to throw away the food they had in their mouths, and threatening to take away their break time and favorite objects. I also witnessed how a couple of therapists threw away children's snacks when they were taking too long to do another activity, and then lied to the parents on the sheet they took home by writing that "the child had had a great day and had eaten all of their snack."  

Even the metrics they boasted so much about, the ones showing the progress of the children to their parents, were flawed.

Throughout my training I saw how absolutely every chart and metric had substantial errors. There were missing records and charts, poorly done procedures, and lapses in ethics. On one of my last days, I saw how a therapist was supposed to be training a child to share their toy, with a minimum of 30 successful attempts.
However, the therapist's methodology was to ask the child to share the toy they were playing with, but let the child only pretend to pass the toy, bringing it close to the therapist before immediately taking it back saying "the car, please". While the therapist marked the task as achieved, the child clearly didn't integrate the concept of waiting or sharing. This methodology potentially worsened the child's reactions in the future when they encounter peers or adults who don’t respond the same way to their expectation that they will get the object back instantly. The therapist simply did not want to take the time to co-regulate with the child, or to teach them in a respectful way, and at a slow pace, how to deal with situations where they will have to give objects to other people,  and that it can even be fun to share. I understood later that what the therapist wanted  was to send a signed copy of the metrics to the parents showing the child had completely mastered the skill. That he was using a loophole to mark the task as done was irrelevant. 

Final words

I admit that I knew ABA was abuse before I applied for the position, but wishful thinking gave me hope that I could make a change from within. I mentioned my approach when I was interviewed - that I don’t agree with behaviorism and that my work has a foundation of attachment and respect, of synchronization with the autistic child, of accepting them and respecting their differences - to which they made me believe that there was a space for me. Yet, when I was there talking with my colleagues, the minute I asked questions or problematized the techniques, they stopped talking with me. I felt my own judgment and competence underestimated - I was isolated, alienated, and lost in an abusive world where children were allowed to be bullied.

After a week I made the decision to resign, and the first thing I did when I got home was to send the only colleague I felt was humane a copy of the book "Loud Hands: Autistic People, Speaking" to the same centre. I hope that at least with that, and all the questions I made that seemed to have made them feel very uncomfortable, they will be left with doubts about their approach. In any case, I will continue to contact families who are interested in a more respectful and humane approach both here in Canada and in Chile. I am writing this to let it be known that even in a developed country like Canada, they still have a long way to go to have a more humane and informed view of what it means to be, and work, with an autistic person.

Even if they try to tell you that it is not as abusive as the first versions, ABA is rotten from its core because it is based on seeing your loved one as an unwanted and defective human being.



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