ABA: No Honesty Allowed
Recently Ariane Zurcher, the eloquent blogger of Emma's Hope Book, posted an exceptional, and apparently highly controversial piece on ABA; and more specifically, the experiences of someone with Autism who endured ABA: "More on ABA"
Note that Ariane shared she had shut down the comments section to her first post on ABA some years back, because she continued to receive hostile responses.
Many responded to this second post with support, but many also responded saying that Ariane was spouting falsehoods, and that she had no idea what she was talking about.
Ariane quoted from a young man named Ido, who shares his experience growing up with Autism and ABA in his book: Ido in Autismland: Climbing out of Autism's Silent Prison. He shares first hand accounts of what it was like to endure what others called "therapy." He details the lack of respect, the isolation, and the misery that was his when subjected to the harsh, thoughtless, and harmful therapy he had for so long. He details that no-one presumed he was competent and that he was left trapped inside himself, subject to the torment of a way of thinking that was by no means therapeutic.
And yet people are commenting on Ariane's piece in the harshest of ways. They are saying that what Ariane is saying (Ido's words) is false.
This is a theme I hear over and over again. If an Autistic person is recounting something that doesn't sit well with the "professionals", he must be wrong. If he is behaving in a way that others find inappropriate (because he is frustrated and cannot communicate), he must be non-compliant and acting out. His Autism must be skewing what he is saying and/or doing. His Autism makes him not understand what's "really" happening. He doesn't have the capacity to "get it."
So they discount what another human being is sharing. They laugh and pat them on the head and walk away, or they get mad and tell them they mustn't do that anymore, or they punish them. This happens all the time to younger children who fight and fight against sitting in a chair for 2 hours, or who refuse to "work" for that piece of candy. We hear they are "non-compliant" and "being difficult." We hear they need behavior modification, stricter rules, and more therapy.
But Ido, and others like him, know what ABA really is. They've experienced it first hand. They're not just sitting making checkmarks and doling out bits of snacks. They're on the receiving end. And now that experience is being shared.
Since that experience doesn't sync with what ABA "therapists" (and others in the Autism industry) want to hear, then apparently it must not be true. In fact it must be an outright lie.
And because to think that it's anything other than a lie is simply too much for many practitioners to realize, it simply isn't acknowledged. Or it's refuted. With anger and hostility. These individuals choose not to listen, not to step outside their own head, and they choose to not move away from their ego long enough to see that what's being provided is offering more harm than good.
To shut out the voices of hundreds (perhaps thousands) of people who are coming forward to share their experiences with ABA and other forms of harsh therapy, is not only a terrible disservice, it is a blatant lack of equality and lack of respect. It is selfish, narrow-minded, and cruel. It is by no means therapeutic.
Who's to say that someone's judgement, of their OWN situation, is wrong? Who is anyone else to judge someone else's judgement? To say that their personal experience isn't accurate?
Ariane: "If you are an ABA therapist, it is your obligation to, at the very least, read what those who are autistic and were given ABA as children are saying about it." "More on ABA"
and Ido's mom in the introduction to his book:
"The ideas in this book challenge many assumptions long held by professionals working with autistic people. In our own experience, Ido broke free in spite of, not because of, the mainstream thinking today. If we had continued to rely on the specialists and educators who dominated Ido's early years, if he had not been able to find a way to show me that he could read and write, and if I had not finally trusted my own eyes and impressions, Ido would still be stuck as he was, locked internally, underestimated, and hopeless. It is time for our understanding of autism to undergo yet another paradigm shift, , and Ido, along with other non-verbal autistic communicators, is a pivotal guide." Page 37 Ido in Autismland: Climbing out of Autism's Silent Prison
Note that Ariane shared she had shut down the comments section to her first post on ABA some years back, because she continued to receive hostile responses.
Many responded to this second post with support, but many also responded saying that Ariane was spouting falsehoods, and that she had no idea what she was talking about.
Ariane quoted from a young man named Ido, who shares his experience growing up with Autism and ABA in his book: Ido in Autismland: Climbing out of Autism's Silent Prison. He shares first hand accounts of what it was like to endure what others called "therapy." He details the lack of respect, the isolation, and the misery that was his when subjected to the harsh, thoughtless, and harmful therapy he had for so long. He details that no-one presumed he was competent and that he was left trapped inside himself, subject to the torment of a way of thinking that was by no means therapeutic.
And yet people are commenting on Ariane's piece in the harshest of ways. They are saying that what Ariane is saying (Ido's words) is false.
This is a theme I hear over and over again. If an Autistic person is recounting something that doesn't sit well with the "professionals", he must be wrong. If he is behaving in a way that others find inappropriate (because he is frustrated and cannot communicate), he must be non-compliant and acting out. His Autism must be skewing what he is saying and/or doing. His Autism makes him not understand what's "really" happening. He doesn't have the capacity to "get it."
So they discount what another human being is sharing. They laugh and pat them on the head and walk away, or they get mad and tell them they mustn't do that anymore, or they punish them. This happens all the time to younger children who fight and fight against sitting in a chair for 2 hours, or who refuse to "work" for that piece of candy. We hear they are "non-compliant" and "being difficult." We hear they need behavior modification, stricter rules, and more therapy.
But Ido, and others like him, know what ABA really is. They've experienced it first hand. They're not just sitting making checkmarks and doling out bits of snacks. They're on the receiving end. And now that experience is being shared.
Since that experience doesn't sync with what ABA "therapists" (and others in the Autism industry) want to hear, then apparently it must not be true. In fact it must be an outright lie.
And because to think that it's anything other than a lie is simply too much for many practitioners to realize, it simply isn't acknowledged. Or it's refuted. With anger and hostility. These individuals choose not to listen, not to step outside their own head, and they choose to not move away from their ego long enough to see that what's being provided is offering more harm than good.
To shut out the voices of hundreds (perhaps thousands) of people who are coming forward to share their experiences with ABA and other forms of harsh therapy, is not only a terrible disservice, it is a blatant lack of equality and lack of respect. It is selfish, narrow-minded, and cruel. It is by no means therapeutic.
Who's to say that someone's judgement, of their OWN situation, is wrong? Who is anyone else to judge someone else's judgement? To say that their personal experience isn't accurate?
Ariane: "If you are an ABA therapist, it is your obligation to, at the very least, read what those who are autistic and were given ABA as children are saying about it." "More on ABA"
and Ido's mom in the introduction to his book:
"The ideas in this book challenge many assumptions long held by professionals working with autistic people. In our own experience, Ido broke free in spite of, not because of, the mainstream thinking today. If we had continued to rely on the specialists and educators who dominated Ido's early years, if he had not been able to find a way to show me that he could read and write, and if I had not finally trusted my own eyes and impressions, Ido would still be stuck as he was, locked internally, underestimated, and hopeless. It is time for our understanding of autism to undergo yet another paradigm shift, , and Ido, along with other non-verbal autistic communicators, is a pivotal guide." Page 37 Ido in Autismland: Climbing out of Autism's Silent Prison
There are many survivors of early ABA in my local community. In the 80s and early 90s, when they were growing up, ABA here was more like "pay people to abuse your child for you." The behaviours of the resulting adults are strikingly similar and stand out as "ABA robots." Yes, they "blend in" with Neuro-Typical society - they blend in so well, they stand out, having suppressed (and in some cases, erased) all of their individuality. Many of these people are now in therapy to recover their sense of identity, buried under layers of fear. Modern ABA may have grown past this in some geographical regions but not in others. Modern ABA practitioners can't bury their heads in the sands and deny that these practices ever occured or the damage done to the resulting adults.
ReplyDeleteKatzedecimal I am so grateful for such a poignant, straightforward comment and so saddened by it. You share so many points that are so frustrating to hear. Those individuals you describe can be seen in young children today too, as they they endure hours and hours of a "therapy" that's supposed to "fix" them.
ReplyDeleteI don't think there can be such a thing as "Modern ABA." No matter how the "therapists" spin it, it still holds the thinking that someone is broken and it still holds the thinking that behavior modification is the way to "fix" everything. And so the denial continues, the refusal to face the truth continues, and bad practices continue.
I must say I really appreciate all that you've written, but especially:
" ....they blend in so well, they stand out, having suppressed (and in some cases, erased) all of their individuality. Many of these people are now in therapy to recover their sense of identity, buried under layers of fear."
The ABA practitioners don't want to hear statements like this. But they must be said. Loudly. For all to hear.
One of the few benefits to being diagnosed as an adult was that I got to skip over the legal torture part of being autistic. I had to deal with my own issues of being forced to be normal, but I can't even imagine the pain of going through ABA. One day it will be looked down on with distaste much the way the Tuskegee and Guatamala syphilis experiments are today.
ReplyDeleteTeigan thank you for sharing that. I'm glad that you didn't have to endure the pain and shame of ABA, and I agree - I hope that the level of distaste is growing now, and things will continue to change - so we won't have to wait decades to look back and see the gross errors that were made on the behalf of so-called "progress."
DeleteWhen I've questioned ABA, the response I got was "people who had bad experiences had unscrupulous therapists; and we're not trying to cure autism." http://mosaicofminds.blogspot.com/2013/11/what-can-behaviorism-actually-achieve.html Basically, my respondent was someone who didn't see autistic kids as broken and wasn't trying to cure them, and he assumed he was representative of ABA therapists in general, while those who aren't like that are just "a few bad apples." When I raised the possibility that there are an awful lot of harmful therapists, and responsible ABA practitioners should weed them out and get their house in order, I was told (on Twitter) that this wasn't possible. To paraphrase, I was told there are too many and it's too easy to call yourself an ABA practitioner. If that's true, there's an easy remedy: raise the bar for admission, and don't let Lovaas-types in. I think the problem must go beyond a few bad apples, because training doesn't emphasize ethics enough--it's telling that so many aspiring ABA therapists fail the *ethics* section of the BCBA exam. I don't know enough about either "ideal ABA" or "ABA as practiced in most cases" to know how much people's bad experiences are due to ABA itself and how much to therapists and parents who see children as broken, but either way ABA practitioners who *don't* see kids as broken need to fix their discipline, not just defend it.
ReplyDeleteEmily you've raised some interesting points. Some thoughts in response: Looking at those with Autism from a behaviorism point of view essentially states that the person with Autism has behaviors that need to be corrected and taught, and once that happens, the person will be "better" and more "normal." The model does not presume competence and is deficit based. Those that practice ABA presume no intrinsic motivation, and everything that's "taught" is based on extrinsic motivation. What's taught are skills that are supposed to help the child be more "classroom ready" and more "appropriate" but that frequently have no impact on the underlying challenges (i..e difficulty engaging with others). There is no emphasis on emotion, affect, and relationships - which is what all children develop to different degrees. Without addressing those things it is impossible to truly benefit the child and support the child in a truly individualized manner.
DeleteThis is why there is no "ideal ABA" vs "ABA as practiced" - because the underlying theory behind ABA is problematic, and generally speaking is harmful and at best, not helpful. Are there "good" ABA therapists who are kind and genuinely want to help their clients? I'm sure there are. But is what they're doing truly helpful? I highly doubt it.
I could go on and on! Thanks for your thoughts :)