this post was submitted on 31 Jan 2024
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looking for resources on ABA written by level 2 or level 3 autistics (feddit.de)
submitted 9 months ago* (last edited 9 months ago) by nichtsowichtig@feddit.de to c/autism@lemmy.world
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CW: Post discusses ABA and possibly Trauma, internalized ableism

Hello there! I'm currently researching the issue of ABA. I'm reading a lot about the criticisms, but most of the resources I found so far are (likely) made by level 1 autistics. As level 2 and level 3 autistics are not as well represented within autism self-advocacy, I would like to understand their position better on the topic. A usual defense for ABA is that it can help high-support-needs autistics to learn important skills, but I would like to read about that from an autistic perspective.

So if there are resources on the subject you can recommend, I'll be grateful! thank you

edit: I'm updating because users in this thread changed my view on this issue. I've been caught up in functioning label, which at the end of the day "levels" of autism still are. Here is what changed my mind:

Those needs you are looking for in an autistic person are completely and utterly irrelevant to you as a reader of their experience, and as far as you’re concerned any or all of the people who have already written about their experience of ABA fit in to your narrow and ignorant category, they just didn’t mention it because again - it isn’t fucking relevant.

There is no reason for me to specifically look for "level 2 or 3" autistics since their experiences are valid, regardless of them disclosing their support needs. It is ableist to expect them to disclose to me how "disabled" they are in order for me to validate their experience. Thanks @DessertStorms@kbin.social and @Ransom@lemmy.ca for helping me understand this. So in a way I found the answers I was looking for, and now I have some thinking to do

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[–] Ransom@lemmy.ca 13 points 9 months ago (2 children)

There is no defense for ABA, period. ABA techniques were adapted for gay conversion therapy, which says a lot. ABA absolutely does not help anyone to learn important skills, but forces people to hide who they are to avoid shame and punishment. It’s abusive, causes trauma, and is not okay.

The use of “levels” is also profoundly problematic. Google it.

I understand what you’re looking for, but happily talking about ABA in an autism space is like asking LGBTQ folks about their positive experiences with gay conversion therapy. Others might feel differently, but some of us have been affected by our past experiences and don’t really care to be reminded of them.

[–] Deestan@lemmy.world 15 points 9 months ago (2 children)

Instead of "Google it", present links to useful resources.

Google has not only gotten worse in general, but is providing completely different realities to different people. You may have that really insightful article as your top result, but someone else will have some unilluminating social media arguments or even several articles defending it eloquently.

[–] Ransom@lemmy.ca 2 points 9 months ago

It’s exhausting to be the research assistant for people who aren’t willing to put in the work. (Not saying that that’s OP.) It’s more within my capacity to point out where someone is making a gaffe and have them do the work to figure out why. I’ve been internetting since Telnet days and nothing has changed: people aren’t interested in sources you find for them, esp. on highly charged topics like this.

[–] nichtsowichtig@feddit.de 6 points 9 months ago* (last edited 9 months ago) (1 children)

their positive experiences with gay conversion therapy.

I am not looking for perspectives in favor of it, what I am looking for are any perspectives from people with high support needs, as the debate around it is usually led by either neurotypicals or (comparatively) independent autistics, who in many cases have no first hand experience with ABA. Autistics with high support needs are the ones most affected by ABA, and ironically they have virtually no voice in this debate, which bothered me.

The use of “levels” is also profoundly problematic. Google it.

Which expression do you prefer, then? genuine question. I found the 'levels' to be a better term as it distinguishes by support needs rather than 'intelligence', as the word 'Asperger' suggests. Googling didn't help with that question. Again, let me know what your preferred expression is.

ABA absolutely does not help anyone to learn important skills, but forces people to hide who they are to avoid shame and punishment. It’s abusive, causes trauma, and is not okay.

I read plenty about these things, and that's why I am also concerned. So what I'm looking for is experiences with the people most affected by it.

(edit)

but some of us have been affected by our past experiences and don’t really care to be reminded of them.

Fair point. I added a Content Warning to the post.

[–] DessertStorms@kbin.social 3 points 9 months ago (1 children)

https://medium.com/neurodiversified/autism-levels-are-still-functioning-labels-f18ce20528dc

https://autisticadvocacy.org/2021/12/functioning-labels-harm-autistic-people/

https://psychiatry-uk.com/higher-or-lower-why-using-functional-labels-to-describe-autism-is-problematic/

https://autisticmama.com/the-problem-with-autism-functioning-labels/

You only wanting to hear from "level" whatever autistic people not only demonstrates your misunderstanding of the autistic spectrum, but also of how these external and artificial "rankings" aren't there to benefit autistic people at all, but those looking to fit us in to their allistic boxes.

We are all autistic and each have out own different and often varying needs, none of which are your business or relevant to your question.

ABA is damaging to autistic people. those able to speak out about it, are. You not wanting to listen to them, or not considering them "enough" to satisfy whatever need it is you have (which I genuinely don't understand), is a you problem.

[–] nichtsowichtig@feddit.de 2 points 9 months ago (2 children)

thanks for the links. To clarify, I oppose "functioning labels" like "severe" or "mild" autism. However, I think it is important to say that some autistics feel more disabled by their autism than others. Support need vary, and there should be a way to express that. If you have another term that is better, I'm all open to hear that! Finding good terms isn't always easy. Doesn't mean any one is better than the other. I agree with you insofar that any kind of "ranking" - as you say, is very misleading. I am usually called "mildly autistic" when I disclose my autism. Which is not how I experience it. I'd personally be more comfortable with being called a high masking autistic, as it doesn't invalidate my experience as much. Again, I am open for better words here. What I read about people who identify as level 2 or 3 autistics is that it is important to them to make some distinction, as their experience is quite different from people with lower support needs.

You not wanting to listen to them, or not considering them “enough” to satisfy whatever need it is you have (which I genuinely don’t understand), is a you problem.

You misunderstand me here. I precisely want to listen to them. What I am looking for is perspectives from people who dealt with more impairing issues (eg problems getting dressed, basic hygiene, trouble to communicate basic needs etc). I haven't seen the perspectives from these particular people.

[–] Ransom@lemmy.ca 5 points 9 months ago (2 children)

perspectives from people who dealt with more impairing issues (eg problems getting dressed, basic hygiene, trouble to communicate basic needs etc)

So those are all me. ABA still sucks. Im okay with admitting that, but I would think that you’d have to be pretty vulnerable to share that info, and not everyone is there. Maybe you have received perspectives from people with those issues who have chosen to not communicate those aspects of their selves.

[–] nichtsowichtig@feddit.de 3 points 9 months ago

Im okay with admitting that, but I would think that you’d have to be pretty vulnerable to share that info

you are right. It is inconsiderate of me to expect people to disclose vulnerabilities in order to have their perspectives validated. I wouldn't want to be treated that way either.

[–] DessertStorms@kbin.social 2 points 9 months ago* (last edited 9 months ago) (1 children)

Right? It's like this person is looking for some messed up twist on inspiration porn/voyeuristic experience where they need to read about how hard a person might find to wipe their ass before they'll consider their experience relevant, it's such bizarre, and ableist, gatekeeping..

[–] nichtsowichtig@feddit.de 2 points 9 months ago

ouch, that hurts. But point taken.

[–] DessertStorms@kbin.social 3 points 9 months ago (1 children)

I think it is important to say that some autistics feel more disabled by their autism than others. Support need vary, and there should be a way to express that. If you have another term that is better, I’m all open to hear that!

You don't need terms. Autistic people are as individual as everyone else, and you have zero need to know an autistic persons' individual needs. If you need to discuss your own needs with a healthcare professional, you go ahead and do that without placing yourself on a scale in comparison to others.

Did you actually read any of the links, or just thank me for them?

Either way, here are a couple of others you could probably use:

https://www.neurodiverging.com/what-is-internalized-ableism-neurodivergent-people-need-to-know/

https://www.autisticparentsuk.org/post/overcoming-internalised-ableism

If you really want to insist on ranking yourself, no one is going to stop you, but you don't get to rank others, nor to pretend that ranking yourself is completely benign and not tied in to ableism, internalised or otherwise.

As for the last part - I didn't misunderstand you at all. Those needs you are looking for in an autistic person are completely and utterly irrelevant to you as a reader of their experience, and as far as you're concerned any or all of the people who have already written about their experience of ABA fit in to your narrow and ignorant category, they just didn't mention it because again - it isn't fucking relevant.

[–] nichtsowichtig@feddit.de 2 points 9 months ago

you make good points. Thanks for sharing your thoughts with me.

[–] retrolasered@lemmy.zip 4 points 9 months ago* (last edited 9 months ago) (1 children)

I hadnt heard of it. It seems that their are polarised opinions even in institutions. childautism.org.uk seem to support it, but autism.org.uk seem to oppose it in favour of PBS: Here

Ive never had any experiene of autism specific therapy. I am regularly off cognitive behaviour therapy though, but ive tried it before and its no help for me so I refuse it nowadays.

[–] nichtsowichtig@feddit.de 4 points 9 months ago

yes. It is regared as traumatic and abusive by many, many autistic self-advocates. I'll provide some links later. However, I found one perspective missing. The debate around it is held by either neurotypical people or by autistics with low support needs. So I'd like to know what autistics with higher support needs think and feel about the issue.

[–] InvisibleShoe@lemmy.world 3 points 9 months ago* (last edited 9 months ago)

I hadn't heard of ABA before but it looks like it's behaviour mod. with a different name. Is this correct?

I've tried behaviour mod a couples of times and it never helped (I'm ASD 1). I found EMDR much better for working through some issues but for everything else I'm just muddling through with my psych.

I found that having a notebook on hand to write down thoughts and musings about areas I felt I was lacking in regards to social skills and life skills useful. This helped me to clarify and narrow down some of the skills I wanted/needed to work on most and I brought this up with my psych and they are helping me work on those skills.

Not everyone can see a psych but if you can identify the skill areas you feel are lacking, I'm sure someone could point you in the right direction.

Sorry if I'm rambling. I do tend to.

[–] savvywolf@pawb.social 3 points 9 months ago (1 children)

Just a heads up on what you are looking for as well.

You seem to be looking for opinions made by people that are very vulnerable and sheltered about an act which many consider abusive.

If you do find a positive experience, how do you know whether it's genuinely positive, or whether the person was just abused into thinking it was positive? With enough torture you can make people think anything you want them to.

[–] nichtsowichtig@feddit.de 4 points 9 months ago

good point. I have already shifted my position on this. Patients won't be able to get their needs met unless they comply, so acting like you like it, or even convincing yourself that you enjoy it is pretty much the only way to get through this process.

[–] savvywolf@pawb.social 2 points 9 months ago

Okay, so I've recently (unfortunately) become embroiled elsewhere in an argument about ABA and forced to look into more details. Figured I'd post my findings here for anyone stumbling on it in the future.

So conversion therapy (ABA is a type of conversion therapy) is based on an old theory from the 1950s that everything was a "behaviour". That includes things like stimming, special interests, eye contact, physical sensitivity, emotional sensitivity, sexuality and gender identity. The idea then continued that normal methods of teaching children behaviour would help "cure" autism symptoms. Like you would teach a child to say please and thank you by gently saying "what's the magic word?".

However it turns out that many of these things are not behaviours, they are just part of how someone's brain works. So if the child learns anything, they learn to mask and lie to make the mean scary teacher happy. The guy that pioneered this technique was also morally empty and didn't consider autistic people "people", so... Yeah. Torture and abuse everywhere. You can find accounts where it gets pretty nasty. Maybe "modern" ABA doesn't do that, but maybe it does. The theory behind it isn't sound anyway.

This has resulted in autistic people being treated as "special needs cattle". Persons without any autonomy that exist just to be "cured" and put to work in society. I would have said that they were treated like diseased dogs, but people tend to feel sympathy when a diseased dog is put down.

Personally, for me (someone who is quite "high functioning" if you can tolerate the label), I'm fortunate to live in a country where that sort of thing isn't really encouraged. However I did have pretty bad anger issues in high school. I can certainly see that if I grew up in a country with laxer mental health awareness I might have been put in one of those therapies. If that happened, would I even still be alive here to talk about it? Who knows...

To get to your point, which I think you were looking at, which was whether it's good for people that really can't communicate, have severe anger issues or have hypersensitivity issues. I guess there's an argument that there's a line where causing people to "mask" or pretend to be someone else to function in society might be warranted. It's an uncomfortable idea to me, but you could probably argue where such a hypothetical line lies. You do need to accept that you are taking away some autonomy away from the person though.