(out of curiosity) why were you doing unpaid volunteer work for an ABA program?

acemindbreaker:

It was a gymnastics program for autistic kids.

One part was an integrated gym thing with autistic kids and low income neurotypical kids doing gymnastics activities together with high school students as teacher aides, and the other part had the autistic kids doing a series of activities solo with two people helping them – a psych student in training to be an ABA therapist, and a high school student. There was also a daycare for younger siblings.

I was one of the high school students in that program – I was 15. I decided to volunteer mainly because I was feeling like I was probably autistic (I got my diagnosis during the time I was volunteering) but hadn’t actually met any other autistic people. Plus, I was really involved in autistic rights, but I had a little niggling question in my mind that maybe I really didn’t know what I was talking about because I’d never met any lower functioning children.

It was a big learning experience for me. I tried to do what I could to make things a bit better for the kids, such as pointing some of the parents to autistic self-advocates online. But it really convinced me that ABA is not a very good thing.

In particular, the worst part of the program was how they treated this one set of 4 year old twins, who were both autistic. Both boys had severe separation anxiety, and one of the goals of their therapy was to help them tolerate separation better. The way they did this was to physically tear these boys away from their mother screaming and struggling, and then hold them in place across the room while they did academic tasks for the promise of going back to mom. Meanwhile, they’d lie to the kids about how many more tasks they needed to do. (“Four more!” Kid does three. “Two more!”)

It ‘worked’, by the end of the program they were leaving mom without crying, but I shudder to think what damage was done to their psychological health and attachment to mom by doing this. Not to mention how it affected all the other kids, because this was in full view of a pile of other kids. I remember one of the younger siblings, a quirky little gifted 4 year old, asking me why one of the twins was crying and looking really concerned. (I said “he wants his mom”, and didn’t get into the full extent of what was going on.)

Those two had it the worst, and for some of the kids it really did seem to be a decent program. But there were other cracks in the program, too. One boy I worked with the most, he was one of the older kids, around 8, and had a lot of echolalia without a clear communicative function. He was also a very stimmy kid in general. He mostly seemed to be doing well in ABA, and the simplified language of ABA commands certainly helped (if you said too many words, he wouldn’t understand you), but he had a lot of signs of sensory issues and apraxia that they were completely oblivious to. At least no one was trying to stop him stimming – not sure why, because we were told to stop stimming (because apparently stimming would compel NT kids to bully them, and we couldn’t hold the NT kids responsible for being assholes), but I refused to and the therapists working with him didn’t bother with it. And he was doing the required tasks fine while stimming. But they didn’t seem to have much of a clue how to deal with the fact that he couldn’t look at a target and throw at the same time, or stuff like that. And no effort was being made to get him any reliable means of communication. Occasionally the therapist would get him to say something prompted, but given how much echolalia he had, that seemed pretty pointless.

And then there was the fact that the ABA therapists always talked to the autistic kids in this high-pitched, condescending tone. Sometimes the only way I could pick out the autistic kids from the low-income NT kids was to listen to how the ABA therapists talked to them. You’d have this 6 year old kid who seemed completely neurotypical at first glance, just gets a little confused when there’s too much going on, but this adult is talking to him like he’s a toddler.

And the oldest autistic kid in the program was 15, and completely nonverbal. He used gestures and a bit of picture communication to get his point across. When I mentioned to his therapist that I was 15, too, and had just been diagnosed with autism, she told me that he hadn’t gotten early ABA, and if he had, he’d be as high functioning as I was. I was doubtful even then, and now, having done the research, I know that that’s complete and utter nonsense. At best, ABA raises tested IQ (keep in mind that tested IQ may not be actual IQ) and adaptive functioning about 20-30 points, and he’d have needed a lot more than that. Plus, the lowest functioning kids on pre-test are the most likely to be non-responders, for whom ABA makes no difference whatsoever. I don’t think ABA was hurting him, from what I saw, but it wasn’t going to make him neurotypical, and not just because he was too old.

So, it wasn’t terrible for all of the kids. But it was frankly torturous for a few kids, and not as good as it should have been for the rest of them.

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(out of curiosity) why were you doing unpaid volunteer work for an ABA program?

acemindbreaker:

It was a gymnastics program for autistic kids.

One part was an integrated gym thing with autistic kids and low income neurotypical kids doing gymnastics activities together with high school students as teacher aides, and the other part had the autistic kids doing a series of activities solo with two people helping them – a psych student in training to be an ABA therapist, and a high school student. There was also a daycare for younger siblings.

I was one of the high school students in that program – I was 15. I decided to volunteer mainly because I was feeling like I was probably autistic (I got my diagnosis during the time I was volunteering) but hadn’t actually met any other autistic people. Plus, I was really involved in autistic rights, but I had a little niggling question in my mind that maybe I really didn’t know what I was talking about because I’d never met any lower functioning children.

It was a big learning experience for me. I tried to do what I could to make things a bit better for the kids, such as pointing some of the parents to autistic self-advocates online. But it really convinced me that ABA is not a very good thing.

In particular, the worst part of the program was how they treated this one set of 4 year old twins, who were both autistic. Both boys had severe separation anxiety, and one of the goals of their therapy was to help them tolerate separation better. The way they did this was to physically tear these boys away from their mother screaming and struggling, and then hold them in place across the room while they did academic tasks for the promise of going back to mom. Meanwhile, they’d lie to the kids about how many more tasks they needed to do. (“Four more!” Kid does three. “Two more!”)

It ‘worked’, by the end of the program they were leaving mom without crying, but I shudder to think what damage was done to their psychological health and attachment to mom by doing this. Not to mention how it affected all the other kids, because this was in full view of a pile of other kids. I remember one of the younger siblings, a quirky little gifted 4 year old, asking me why one of the twins was crying and looking really concerned. (I said “he wants his mom”, and didn’t get into the full extent of what was going on.)

Those two had it the worst, and for some of the kids it really did seem to be a decent program. But there were other cracks in the program, too. One boy I worked with the most, he was one of the older kids, around 8, and had a lot of echolalia without a clear communicative function. He was also a very stimmy kid in general. He mostly seemed to be doing well in ABA, and the simplified language of ABA commands certainly helped (if you said too many words, he wouldn’t understand you), but he had a lot of signs of sensory issues and apraxia that they were completely oblivious to. At least no one was trying to stop him stimming – not sure why, because we were told to stop stimming (because apparently stimming would compel NT kids to bully them, and we couldn’t hold the NT kids responsible for being assholes), but I refused to and the therapists working with him didn’t bother with it. And he was doing the required tasks fine while stimming. But they didn’t seem to have much of a clue how to deal with the fact that he couldn’t look at a target and throw at the same time, or stuff like that. And no effort was being made to get him any reliable means of communication. Occasionally the therapist would get him to say something prompted, but given how much echolalia he had, that seemed pretty pointless.

And then there was the fact that the ABA therapists always talked to the autistic kids in this high-pitched, condescending tone. Sometimes the only way I could pick out the autistic kids from the low-income NT kids was to listen to how the ABA therapists talked to them. You’d have this 6 year old kid who seemed completely neurotypical at first glance, just gets a little confused when there’s too much going on, but this adult is talking to him like he’s a toddler.

And the oldest autistic kid in the program was 15, and completely nonverbal. He used gestures and a bit of picture communication to get his point across. When I mentioned to his therapist that I was 15, too, and had just been diagnosed with autism, she told me that he hadn’t gotten early ABA, and if he had, he’d be as high functioning as I was. I was doubtful even then, and now, having done the research, I know that that’s complete and utter nonsense. At best, ABA raises tested IQ (keep in mind that tested IQ may not be actual IQ) and adaptive functioning about 20-30 points, and he’d have needed a lot more than that. Plus, the lowest functioning kids on pre-test are the most likely to be non-responders, for whom ABA makes no difference whatsoever. I don’t think ABA was hurting him, from what I saw, but it wasn’t going to make him neurotypical, and not just because he was too old.

So, it wasn’t terrible for all of the kids. But it was frankly torturous for a few kids, and not as good as it should have been for the rest of them.

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