RESEARCH HELP: Voices of Autistic people/their parents/providers on ABA therapy

[cassibull]

Hi all! I am currently in a Child Studies class where we get to conduct our very own qualitative research on a topic of our choice. I have chosen to look into perspectives on ABA therapy for autism, attempting to synthesize the patient, parent, and provider points of view. There has been advocacy as of late that ABA may be harmful to autistic individuals, but there has not been much empirical research or attempts to center autistic voices in this. I was hoping you may be able to take a few minutes and help out if you have had experience with ABA and would be interested in participating!

There are three quick surveys, just over 10 questions each; one for parents to fill out and one for former (or current) patients.

Here are the links:

Patient- Parent vs. Patient vs. Provider Perspectives on Applied Behavior Analysis (Patient)
Parent- Parent vs. Patient vs. Provider Perspectives on Applied Behavior Analysis (Parent)
Provider- Parent vs. Patient vs. Provider Perspectives on Applied Behavior Analysis (Provider)

I appreciate your help and consideration

 

[Rodafina]

Hi @cassibull
I'm wondering what made you choose to do your research on this topic.

 

[cassibull]

Hi @cassibull
I'm wondering what made you choose to do your research on this topic.

Hi @Rodafina ! Thanks for asking. My sister is disabled and I have been interested in various interventions in the field throughout my life. She engaged in occupational therapy and physical therapy throughout our childhood, and in working with people with disabilities, I have heard from the autistic community that there are many ethical implications embedded within ABA. There is not much research out there, unfortunately, that centers autistic voices so I was hoping to collect data and get to the bottom of a phenomenon I had heard about, but had not seen much empirical evidence for.

 

[TBRS1]

You might want to look at ABA therapy side-by-side with conversion therapy for gay people.

This will help you understand why so many people despise it, despite it being the only therapy commonly offered specifically for ASD folk.

 

[Levitator]

You might want to look at ABA therapy side-by-side with conversion therapy for gay people.

This will help you understand why so many people despise it, despite it being the only therapy commonly offered specifically for ASD folk.

Yep, I think you'll find a lot of people who are content the way they are and they would simply prefer for the world to stop discriminating against them. It has crossed my mind that that the closest terminology that exists for autism-like culture would be "nerd", and it's not exactly flattering, and then every remaining term from there is more derogatory or pathological. It's entirely possible to be satisfied with who you are, and then just be miserable with the way that people refuse to relate to you because they don't understand that some people just express themselves differently.

 

[jsilver256]

I have noticed a lot of ASD who have no experience with ABA speak out against ABA. To myself who is also Deaf, this strikes me as similar to the extremists in the Deaf community who speak out against cochlear implants. Maybe ABA is harmful, maybe ABA is helpful, maybe as with many treatments it is more useful for some than others. I myself have no experience with ABA and cannot offer commentary, just be aware that there is a natural human tendency to form in-groups.

 

[Levitator]

I have noticed a lot of ASD who have no experience with ABA speak out against ABA. To myself who is also Deaf, this strikes me as similar to the extremists in the Deaf community who speak out against cochlear implants. Maybe ABA is harmful, maybe ABA is helpful, maybe as with many treatments it is more useful for some than others. I myself have no experience with ABA and cannot offer commentary, just be aware that there is a natural human tendency to form in-groups.

No, I don't want to hear a word about in-groups. We are an out-group, and that's enforced on us, so that is why we ought to have a non-pathological and non-derogatory identity.

I have no idea what ABA is, and I was commenting on being fine the way I am. I'll accede to things like working on my posture. I have a subconscious tendency to speak with my mouth nearly shut because I've spent my entirely life being conditioned with the idea that I look stupid. That I'll adjust. My nature and inward thinking, no thanks. The things I actually want to adjust; those turn out, not so surprisingly, to be consequences of trauma, repression and imposed inward retreat. Those are imposed, so if I need changing, the culture that caused that needs more change, but good luck with that.

 

[Mary Terry]

I have noticed a lot of ASD who have no experience with ABA speak out against ABA. To myself who is also Deaf, this strikes me as similar to the extremists in the Deaf community who speak out against cochlear implants. Maybe ABA is harmful, maybe ABA is helpful, maybe as with many treatments it is more useful for some than others. I myself have no experience with ABA and cannot offer commentary, just be aware that there is a natural human tendency to form in-groups.

I have no experience with ABA, and I know that most people on the spectrum hate it and feel it is cruel. But I observe that my autistic nephew had some ABA therapy when he was young to help him address various potentially self-harming behaviors. He never seemed anxious or upset about going to therapy, and in fact, seemed to like to go, so I wonder if ABA can be useful if the therapist is experienced, empathetic and not an abusive person.

 

[TBRS1]

For those who don't know about "B" (behaviourist) treatments:

Fundamental principle is this - the internal state of the subject (happy, sad, confident, frightened, feeling loved, feeling unloved, etc.) is completely meaningless. Even caring about the "happiness" of the subject was "unscientific."

When I was taught behaviorism back in the 80s, I was taught that the difference in males and females was that females were raised to act female, but males were raised to act male. Raise a female like a boy and you have a boy in a female body.

Most people don't buy that any more. Ask somebody transgendered about that.

In behaviorist "schnitz", all that matters is how well the subject exhibits the behaviors they are being trained to exhibit.

If you don't make enough eye contact, you are trained to endure eye contact for 10-15 minute sessions. Does that make you want to hide and cry? Behaviorist says "Unscientific!"

 

[Judge]

I have no experience with ABA, and I know that most people on the spectrum hate it and feel it is cruel. But I observe that my autistic nephew had some ABA therapy when he was young to help him address various potentially self-harming behaviors. He never seemed anxious or upset about going to therapy, and in fact, seemed to like to go, so I wonder if ABA can be useful if the therapist is experienced, empathetic and not an abusive person.

Good question. Though the prognosis from my own perspective doesn't look particularly good.

I suppose I'd have to consider one thing in particular. The formal documentation of an explanation of intent
behind applying a specific form of ABA on a specific autistic individual. With the following considerations:

Can individual therapy strategies be void in whole or in part at forced social conformity where autism is approached as a disease? With a tacit understanding that there is no "one-size-fits-all" model of such therapy.

And can the healthcare industry maintain the ability to monitor and identify and exclude those whose primary intent may well be monetary gain? Where legislation and expansion of healthcare coverage regarding autism has created yet another "golden goose" for those employed in human services. Those exploiting ABA itself apart from autistic patients involved.

A link which outlines such concerns:

Commentary: The autistic community is having a reckoning with ABA therapy. We should listen

Applied Behavior Analysis (ABA) is seen as the main intervention for autism–but the costly treatment takes its toll on autistic individuals.

fortune.com

 

[Rodafina]

Here are some different links and perspectives regarding ABA shared in forum threads. (In the spirit of full disclosure, I am mostly against ABA therapy, however I do think the practitioner has a lot to do with it. I know there is at least one ABA therapist here on the forum and I think there is always the possibility for someone to be doing good work, despite what I think is a flawed therapy.)

https://www.autismforums.com/thread...d-for-a-parent-considering-aba-therapy.43030/

What are the strongest arguments in favour of ABA?

New study shows children don't approve of a form of ABA as much as parents and clinicians do

ABA and the Denver model

Thoughts on ABA?

Some links that forum members have shared in other threads:

AMA considers changing its position on ABA therapy

Debates on the effectiveness and previous damaging controversies about ABA has meant the AMA is considering to distance itself from the therapy Delegates

au-ti.com

The Controversy Around ABA - Child Mind Institute

Applied behavior analysis is the most popular evidence-based treatment for autism, but some worry it's too tough or focuses on the wrong things. Learn more.

childmind.org

Why ABA Therapy is Harmful to Autistic People

You may have heard of “Applied Behavioral Analysis therapy.” You might think that it must be good for your child because a lot of teachers, therapists, and doctors have endorse it for a…

autisticscienceperson.com

Is ABA therapy harmful or helpful for kids with autism? - Today's Parent

Applied Behaviour Analysis is widely used and funded across Canada, but some people with autism spectrum disorder say it causes lasting trauma.

www.todaysparent.com

 

[jsilver256]

No, I don't want to hear a word about in-groups. We are an out-group, and that's enforced on us, so that is why we ought to have a non-pathological and non-derogatory identity.

I have no idea what ABA is, and I was commenting on being fine the way I am. I'll accede to things like working on my posture. I have a subconscious tendency to speak with my mouth nearly shut because I've spent my entirely life being conditioned with the idea that I look stupid. That I'll adjust. My nature and inward thinking, no thanks. The things I actually want to adjust; those turn out, not so surprisingly, to be consequences of trauma, repression and imposed inward retreat. Those are imposed, so if I need changing, the culture that caused that needs more change, but good luck with that.

I understand your perspective. I was speaking of the Deaf culture here. It definitely has historically been an out-group, but has adopted certain elements of in-group thinking (e.g., the idea that forcing cochlear implants on children is universally abusive). I have no idea if this is what is happening with ABA, all I am saying is that a lot of the activism I see against ABA remind me of the blanket arguments by some in the Deaf community. I do not even mean to suggest that these arguments are necessarily wrong.

 

[Levitator]

I understand your perspective. I was speaking of the Deaf culture here. It definitely has historically been an out-group, but has adopted certain elements of in-group thinking (e.g., the idea that forcing cochlear implants on children is universally abusive). I have no idea if this is what is happening with ABA, all I am saying is that a lot of the activism I see against ABA remind me of the blanket arguments by some in the Deaf community. I do not even mean to suggest that these arguments are necessarily wrong.

Forcing things on people is inherently abusive, and there exist rational arguments against accepting technology inside your body. You can argue that it doesn't make sense to prefer deafness as such, but I'm not convinced that isn't just bias from people who love to stir the pot and pick the most controversial position as a near straw-man.

Ultimately, though, forcing things on people is, in fact, inherently abusive. They're not obligated to share their reasoning with you; you're obligated to respect their rights.

 

[jsilver256]

Ultimately, though, forcing things on people is, in fact, inherently abusive. They're not obligated to share their reasoning with you; you're obligated to respect their rights.

You are making a blanket statement for what is an extremely complex issue within the Deaf community. The idea of "forcing" can extend to any treatment or even normal matters of discipline.

 

[GrownupGirl]

Do deaf people go to a therapy get their hands slammed down on a table for using sign language? Do they get electrical shocks or forced to inhale ammonia? Do they get punished for being sad or upset until they develop PTSD? Because that's what ABA does to autistic people, because they don't even see autistic people as human.

Which is ironic, since humans just looove to treat people who are different like garbage.

 

[Levitator]

Do deaf people go to a therapy get their hands slammed down on a table for using sign language? Do they get electrical shocks or forced to inhale ammonia? Do they get punished for being sad or upset until they develop PTSD? Because that's what ABA does to autistic people, because they don't even see autistic people as human.

Which is ironic, since humans just looove to treat people who are different like garbage.

Is that what they actually do? That's sickening. Those people likely behave the way they do because they are already struggling, and then attempting to whip them into "shape" by creating aversions is totally dysfunctional and wrong. Most of what I would change about myself is a consequence of vicious people attempting to beat their standards into me, just as I finished describing. There is nothing healthy that comes of beating your opinion into someone else.

 

[cassibull]

Thank you all for sharing your thoughts and experiences. In my preliminary research I have definitely seen things from both sides as well-- people have had helpful experiences, and people have had awful, entirely abusive experiences. If any of you guys have had any experiences firsthand, or are the parent/guardian whose child has experienced it firsthand, I would really love it if you could take just a few minutes to fill out the links I put on the original post so I can incorporate your experience into my research!

 

[Tom]

Too much a hot button topic for some. Can't really talk about it here.