Thread by @AutSciPerson

TW ABA, abuse, torture

I am actually going to break down this journal article.

And explain why it's actually even worse than I thought originally.

1/25

https://twitter.com/AnnMemmott/status/1393970575530512388

The parent of the autistic person explained to the ABA therapists that her autistic teen has meltdowns when listening to loud noises and specific noises.

Instead of just believing her, or just observing the teen,

they put him in a room..
2/25

TW torture

And they played different noises to him that were assumed to upset him. They played 5 minutes of noises, different volumes of 55, 75, or 85 dB SPL (which is loud for NTs). Including babies crying, dogs barking, fireworks, sirens, and thunder.
3/25

They also put a heart rate monitor on him for every single session, not that it says anything about consent at all. They say that his heart rate was at baseline with out sound playing, once it was on, so they assumed he was fine with it I guess?
They never show him his HR.
4/25

TW torture

If he had an "occurrence of problem behavior" they would stop the sound for 30 seconds.

Wow, what a break, a whole 30 seconds. /s

And then go back to playing the horrible loud noise that they knew he intentionally avoids.
5/25

They then observe his "avoidance behavior" and "anxious behavior" as well as heart rate, and plot it on a graph.

His heart rate was 109 bpm on average when listening to babies crying at 85 dB SPL, max at 120 bpm.

His resting heart rate was 72.5 bpm on average.
6/25

TW torture

The worst part is, after they torture him with loud sounds they already knew were upsetting to him, they now decide they're going to try to help him cope.

7/25

TW torture

They call this a "preference assessment to identify which relaxation/coping skills Aaron would prefer to use when noise was present."

You just tortured him, and now you're going to decide to ask him what HE would like to do when noise is present? Really?

8/25

Aaron "received one-on-one training" in specific coping mechanisms (note: It does not say he wanted these specific coping mechanisms, it says this is what was done),

including "behavioral relaxation training," some deep breathing, looking at pictures, singing songs..

9/25

using a squeeze ball, drinking water, and wait for it..
"asking for a 'break' from the noise"
and
"asking for and using earplugs."

Yea, they're including that now as options! After the torture!

10/25

Can you guess what Aaron's strongest preference was when they had him rate which ones he'd like to use?

It was Asking For Earplugs.

Yea. Who would've thought, right?

This is where this paper gets extra infuriating.

11/25

So they actually made a visual list for him "that could be used to visually cue him during treatment sessions."

Guess what those "treatment sessions" are actually focused on? They say it right in the paper!

They want to focus on "increasing tolerance to noise"

12/25

because he can't eliminate noise in the real world. That's actually what they say, and "systematic desensitization."

When his preference is earplugs. I don't think ear defenders were an option, and I'm sure noise-canceling headphones weren't based on the discussion..

13/25

They were "nice" to him though, in these "treatment sessions" they only started the noise out at 45 dB SPL, and then it grew progressively louder to 85 dB SPL throughout the session.

So. Nice. And only 2 minutes of sound too! Wow. Real nice people.

14/25

This is the other sneaky thing in this paper.

Before these treatment sessions, Aaron was allowed to do a 10-minute breathing behavior relaxation session.

This was his 3rd preference. Why wasn't he given earplugs before his session instead? That's what he said he prefers!

15/25

They THEN go on to try to justify why the relaxation technique was used and say it's been "shown to be highly effective" for people with intellectual disability. But that's not what Aaron rated as most helpful! Maybe listen to Aaron!

This is why ABA is so damn harmful.

16/25

Then, Aaron was incentivized (of course!) and rewarded when he chose a coping skill, and then every 30 seconds afterwards if he kept using it. I'm not sure why the reward is even necessary because I'm sure Aaron didn't want to be sitting there listening to awful sounds.

17/25

Aaron has a heart rate monitor on this entire time btw. They then say that his behavior and anxiety has improved specifically because his heart rate wasn't as high, and also do this same treatment in other settings, like his house (those were at 85 dB SPL only).

18/25

They even say that he continued to use his coping skills (to their surprise based on the phrasing) even when he didn't have a high heart rate.

It's almost like he has a physiological response and wants to continue to avoid auditory pain?
#SayNoToABA

19/25

This is the most insidious and sneaky part in my opinion:

They call what they did, with using coping mechanisms (such as ear plugs, I'm assuming, though they're rarely mentioned in this paper),

"systematic desensitization"

20/25

I sure as hell don't think wearing earplugs is "desensitization." This term makes absolutely no sense in the context of this paper. All they have done is shown that autistic teens can have a high heart rate when very stressed and in pain, and earplugs can help with that.

21/25

They even say that this is a treatment option specifically "to tolerate aversive stimuli in a more socially acceptable manner."

They focus on the fact that you can't always avoid certain noises, so you -need- to tolerate them. But that's not even what they're doing.

22/25

The discussion explicitly states that other research focused on autistic people asking for a break from the noise, or using "noise avoidance techniques" like noise-cancelling headphones.

They say earplugs are better because they don't completely get rid of the sound.

23/25

What they stated above is utter nonsense. The idea that Aaron is less anxious because he is wearing earplugs is not desensitization, and is not "increasing tolerance"! It's sensory support and ear protection, period!

They call it "successful desensitization."

24/25

If you want your autistic kid/student/client to not have distressing behavior (to you) during certain sensory stimuli,

give them some damn sensory supports.

Don't torture them until you can figure out what stresses them out the most & pretend like you're helping.

25/25

Although I'm sure there are people who approved this thinking it was totally fine because they don't see autistic people as people,

another reason allistics may have approved this is because it has some weird kind of illusion of autonomy, at least at the end of it. 1/7

The researchers shroud a lot of the awful torture stuff in jargon so it doesn't seem as bad, and at the end they talk about how their "strategies exemplified person-centered planning" and provided him with agency for which "intervention" he wanted. 2/7

It's as if torturing him to determine all of this was fine because well, we were trying to help, and we did ask him at the end!

And it's Really Not Fine. 0% of what they did was fine. A 16-year-old autistic kid was tortured and they are positioning themselves as his savior. 3/7

Autistic adults have more expertise than some researchers ever will, because they don't consider us to be human beings.

It's funny how we're so often talked over, how if we don't have credentials then we must know nothing about helping autistic people, 4/7

and how if you do have credentials, and you're autistic, it somehow makes you -less- of an "expert on autism."

I wonder if that parent posted in a facebook group full of autistic adults, if she would've just given him earplugs and headphones, and he would've been good. 5/7

Instead he gets to be traumatized by "autism professionals" and ABA therapists because they wanted to pretend as if they were helping him to live in the "real world" and to "be independent."

It doesn't really matter how independent you are in this life if you end up dead. 6/7

Autistic people are experts in our own lived experiences. Autistic people without credentials can often help you understand the autistic person in your life than a professional can especially if that professional is an ABA therapist.

We are the ones who are actually helping. 7/7

Oh and one last thing:

If you ever wonder why I talk about auditory sensitivity and hyperacusis so much, to explain they're a physiological response and painful and not something that can't just be "tolerated"

THIS IS WHY.

Separate thread on what hyperacusis feels like, and how non-autistic people can understand it better:

https://twitter.com/AutSciPerson/status/1394377141635190790?s=20