Autistic perspective on ABA

[tr]

I just ran across this, though it's something that was posted some time ago.

Quiet Hands

I found it quite disturbing. I was taught that ABA is the gold-standard treatment for ASD, and that the younger it commences, the better the outcome. It seems the view from the inside may be different.
Thoughts? Is behavioral control still considered foundational to further education? I'd appreciate hearing from people who are current with this.

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[barbatenussapientes]

Here are some of my thoughts. I have actually had a discussion recently on a similar topic related to a colleague's work with a patient. However, I would not consider myself overly versed in this area but would enjoy partaking in the discussion.

The neurodiversity movement has gained a great deal of (imo, well deserved) attention. Essentially, it is a basic respect for and understanding that there are many variations of human behavior and that our treatments should not strive to make individuals "act like neurotypicals." Like anything, it is vastly more complex than that. For example, if an individual has social anxiety and ASD, and has goals for interacting in specific social situations, then it may be appropriate to work with them to find less obvious ways to stim. However, it would only be in service of their larger goal and with the mutual understanding that their behaviors are not wrong. It is quite a tight rope to walk.

Regarding education, I think it is again context dependent and dependent on the individual. Eliminating any behavior because it is non-normative should not be the goal. Instead, the function and consequences of the behavior should be understood - e.g., does stimming actually improve focus for this child? Is the stimming non-disruptive to others? If so, then is there a need for control of that behavior? I'd say no.

With that said, ABA is still very effective and can/should be used where appropriate. I'd imagine ABA advocates would say that all of the above fits perfectly with their ideals. From my admittedly limited knowledge, functional analysis of behavior is a fundamental part of ABA. So, I think this is a pushback against the incorrect application of ABA to all behaviors considered non-normative.

 

[WisNeuro]

With that said, ABA is still very effective and can/should be used where appropriate. I'd imagine ABA advocates would say that all of the above fits perfectly with their ideals. From my admittedly limited knowledge, functional analysis of behavior is a fundamental part of ABA. So, I think this is a pushback against the incorrect application of ABA to all behaviors considered non-normative.

I would agree with this. Also, there was a study that tried to assert high levels of "PTSD" in those who had been given ABA, but the study was a methodological mess from what I recall. There are some on here with a lot more expertise than I do who can weigh in. @ClinicalABA ?

 

[PsyDr]

Arguably, the general idea of most psychiatry and clinical psychology is to put steer individual functioning towards the median.

Pragmatically, is it better to have a person whose cognition is different but is able to act like their peers OR is it better to have someone whose cognition is different and does not know how to act like their peers?

A lot of interventions are unpleasant in both psychology and medicine. That does not mean they do not help improve functioning.

 

[ClinicalABA]

I would agree with this. Also, there was a study that tried to assert high levels of "PTSD" in those who had been given ABA, but the study was a methodological mess from what I recall. There are some on here with a lot more expertise than I do who can weigh in. @ClinicalABA ?

A few observations-

-The piece itself does not directly reference ABA (though it comes up in the comments). Based on what the author wrote, it does not sound like an ABA intervention to me. Metaphor-based verbal redirection followed by or combined with holding or gluing (!) is not ABA. Let me be clear- I'm not saying it's "bad ABA", I'm saying it's not ABA at all. It does not meet the criteria of being ALL of the following: applied; behavioral; analytic; technological; conceptually systematic; effective; or promoting generality (it is particularly lacking in regards to applied; analytic; conceptually systematic; and promoting generality). If any student in my Clinical Interventions class suggested such an approach (particularly the use of tacky glue) on one of our assignments, not only would they fail the assignment but I would would meet with them to review some basic concepts of ABA before they could proceed with the course.

-From what the author says (again- not what the COMMENTERS say), these procedures were implemented by educational staff and parents and may or may not have been part of more comprehensive program focusing on increasing adaptive functioning and quality of life. My experience has been that such interventions are also recommended by some OTs.

-When working with non-verbal children (or adults, for that matter) who often are not able to clearly advocate for themselves we always need to be mindful of that fact and have multiple measures of social validity of our interventions and goals. All too often we (not just ABAs, but psych and other MH, as well as educational and allied health) develop "adult preferred goals" without considering client or peer-preferred goals. I think it is incredibly important and valuable for clinicians to hear these stories of those who "now have a voice" and can comment about what was done with/to/against them back when they didn't have that voice, and account for such "data" in their (the clinician's) analysis of the social validity of any goals or interventions for those who still don't have that voice. Even if it is personally or professionally uncomfortable, we need to seek out and listen too testimonials like these. I was not aware of this specific blog, but I will definitely review it in forthcoming ethics and interventions courses

-ABA is it's own field of training and practice. Board Certification requires a minimum of a Masters Degree, with completion of a six-course graduate level sequence (including a semester long ethics course that should touch on why this type of intervention is ethically problematic and an interventions course that should touch on why this type of intervention is clinically problematic) and ~1500 hours of supervised fieldwork. Practicing ABA without meeting these MINIMUM standards of training and experience is unethical and- in many jurisdictions/settings- illegal as the practice of ABA is licensed in many states (though exemptions are often given in educational setting or to psychologists, regardless of training). If you encounter something being touted as "ABA", inquire about the credentials of the person overseeing the interventions. If that person is not board certified, it might be prudent to attribute any flaws in the intervention to the person, rather than to the discipline they claim to be practicing.

-As with any field, there are some really crappy practitioners out there (including credentialled/licensed practitioners). Some of these probably do some pretty bad stuff. That's 'cause they suck, not because the discipline sucks.

-It sounds like the author of the blog had a pretty bad experience. If it was in the context of a comprehensive, well designed and monitored ABA program, then ABA needs to be better. If it was outside of such a context, then ABA needs to do a better job of making sure people who need it have access to good ABA services, with protections against substandard, unethical, and/or abusive treatments.

 

[ClinicalABA]

Here is another blog post on stimming from the same author:

Functional Stimming (July 2009)

I find her perspective to be very informative (and well-presented). I particularly like what she has to say in the final paragraph.

 

[futureapppsy2]

As a behavior analyst who's also in the disability justice community, I have a lot of thoughts on this. I'll reply later!

 

[deleted343839]

Practicing ABA without meeting these MINIMUM standards of training and experience is unethical and- in many jurisdictions/settings- illegal as the practice of ABA is licensed in many states (though exemptions are often given in educational setting or to psychologists, regardless of training). If you encounter something being touted as "ABA", inquire about the credentials of the person overseeing the interventions. If that person is not board certified, it might be prudent to attribute any flaws in the intervention to the person, rather than to the discipline they claim to be practicing.

Unfortunately, I have seen the term "ABA" thrown around in all kinds of sloppy contexts, including a $30K/yr preschool-based program for children with developmental disabilities where there was no actual BCBA on staff. I remember talking to the teacher and her weird pride at how small she could make the reinforcers (M&Ms).

 

[biscuitsbiscuits]

A few observations-

-The piece itself does not directly reference ABA (though it comes up in the comments). Based on what the author wrote, it does not sound like an ABA intervention to me. Metaphor-based verbal redirection followed by or combined with holding or gluing (!) is not ABA. Let me be clear- I'm not saying it's "bad ABA", I'm saying it's not ABA at all. It does not meet the criteria of being ALL of the following: applied; behavioral; analytic; technological; conceptually systematic; effective; or promoting generality (it is particularly lacking in regards to applied; analytic; conceptually systematic; and promoting generality). If any student in my Clinical Interventions class suggested such an approach (particularly the use of tacky glue) on one of our assignments, not only would they fail the assignment but I would would meet with them to review some basic concepts of ABA before they could proceed with the course.

-From what the author says (again- not what the COMMENTERS say), these procedures were implemented by educational staff and parents and may or may not have been part of more comprehensive program focusing on increasing adaptive functioning and quality of life. My experience has been that such interventions are also recommended by some OTs.

-When working with non-verbal children (or adults, for that matter) who often are not able to clearly advocate for themselves we always need to be mindful of that fact and have multiple measures of social validity of our interventions and goals. All too often we (not just ABAs, but psych and other MH, as well as educational and allied health) develop "adult preferred goals" without considering client or peer-preferred goals. I think it is incredibly important and valuable for clinicians to hear these stories of those who "now have a voice" and can comment about what was done with/to/against them back when they didn't have that voice, and account for such "data" in their (the clinician's) analysis of the social validity of any goals or interventions for those who still don't have that voice. Even if it is personally or professionally uncomfortable, we need to seek out and listen too testimonials like these. I was not aware of this specific blog, but I will definitely review it in forthcoming ethics and interventions courses

-ABA is it's own field of training and practice. Board Certification requires a minimum of a Masters Degree, with completion of a six-course graduate level sequence (including a semester long ethics course that should touch on why this type of intervention is ethically problematic and an interventions course that should touch on why this type of intervention is clinically problematic) and ~1500 hours of supervised fieldwork. Practicing ABA without meeting these MINIMUM standards of training and experience is unethical and- in many jurisdictions/settings- illegal as the practice of ABA is licensed in many states (though exemptions are often given in educational setting or to psychologists, regardless of training). If you encounter something being touted as "ABA", inquire about the credentials of the person overseeing the interventions. If that person is not board certified, it might be prudent to attribute any flaws in the intervention to the person, rather than to the discipline they claim to be practicing.

-As with any field, there are some really crappy practitioners out there (including credentialled/licensed practitioners). Some of these probably do some pretty bad stuff. That's 'cause they suck, not because the discipline sucks.

-It sounds like the author of the blog had a pretty bad experience. If it was in the context of a comprehensive, well designed and monitored ABA program, then ABA needs to be better. If it was outside of such a context, then ABA needs to do a better job of making sure people who need it have access to good ABA services, with protections against substandard, unethical, and/or abusive treatments.

 

[ClinicalABA]

I can certainly appreciate all the above comments regarding weighing the positive outcomes versus the difficulty of treatment. However, I think that somewhat misses the point of the linked blog posts. Firstly, there did not seem to be any positive outcomes for the client- a behavior was made less likely to occur (in the short term or specific contexts only) without regarding to the function of the behavior. Secondly, the intervention was highly aversive/restrictive, both subjectively to the client and objectively by most legal ethical standards. Hopefully we can reach a consensus that gluing someone's hands down in an extreme intervention, especially if the concerns are about the social impacts of the behavior (rather than, say, significant harm to self or others- though it would still be pretty extreme in that case as well). In summary, this does not seem to me to be a case of the result of an effective treatment outweighing the aversiveness of they seen treatment. It was a bad, ineffective, arguably abusive intervention that really did not have the desired effect and potentially had some very negative side-effects.

In reading more from the author of the linked posts (Julia is her name), it makes me think about "stimming" behavior in a more detailed clinical/behavior analytic context. Often, such behaviors are seen- and analyzed- as the "B" in the "ABC" chain. There are a certain set of stimulus conditions (A) that reliably precede and signal the likelihood that the response (B) will lead to a reinforcing consequence (C). In this case, it seems like the stimming behavior serves as an environmental condition that makes another behavior possible (or, more precisely, more likely to result in reinforcement). In addition to resulting in extreme happiness/eupohoria. She says that she is better able to "think" and plan her writing when she is stimming. As such, it may be best conceptualized as, in behavioral terms, a sort of motivating operation/establishing stimuli, and this should be accounted for during pre-treatment analyses. I shall do so in my future clinical work. It may not always be the case, but it could be and accounted for it might lead to more nuanced analysis and intervention. This is admittedly difficult with my population (very young, non- or pre-verbal) who are very good at reporting details of private behaviors.

On a different, yet related, note- I think a lot of time is spent focusing on reducing "stimming" in the name of social acceptance. Well-intention adults (and, unfortunately, non-well-intentioned adults) often overrate the social unacceptability of such behaviors, and thus over-target them as behaviors to reduce. Even with an appropriate functional assessment and FA derived intervention, it may not be that important of a behavior to "treat," as it may be relatively harmless, not that socially stigmatizing, over pathologized, and- most important- necessary to the client in some yet unable to be determined way. I have worked with children with extremely high rates of stimming (i.e. automatically reinforced) behaviors that interfered with multiple areas of skill development, as well as with children whose stimming led to medical problems (e.g., skin and fingernail breakdown/infection secondary to mouthing). In these cases, the team determined that function based interventions target a change in teh topography of the behavior was warranted. I've had other cases where we did not prioritize or intervene because it just wasn't that big a deal.

 

[futureapppsy2]

Okay, thoughts... Hoo boy, this is a hornets' nest I regularly encounter, having a great many friends and colleagues in both camps, having published in both camps, etc. I've seen people from both sides absolutely trash the other side as abusive and toxic, but I think most people on both sides are generally reasonable, intelligent, and good people, with some people in both camps who are legitimately toxic and harmful.

-ABA is effective at behavior change. It's a wonderful, evidence-based science that can do and has done a lot of good. It can also be used for things that end up doing harm, and it has been--Lovaas and Rekker published studies on using ABA to treat feminine boys so that they would be more gender-conforming, with the idea that it could prevent homosexuality, for example, and early (talking 70s and 80s, so not that old) ABA programs used physical abuse as positive punishment. The Judge Rottenberg Center still uses shocks, for example, with video evidence that the essentially just shock the hell out of clients for minor non-compliance. Many current big names in ABA are on their board.

-Both sides need to stop saying "that's not ABA" when they like or don't like something. I've seen this both in ABA when morally questionable but scientifically accurate practices are being used and in disability justice circles when ABA is being used to promote something they agree with (AAC, functional communication, self-advocacy, etc).

-The question of social significance with many autistic behaviors is an interesting philosophical one--to what degree should people work to change non-harmful bx because it makes others more comfortable versus to what degree should others become more comfortable with a broader range of bx? There's a lot of pertinent parallels here with sexual orientation and gender identity (saying that as someone who's a sexual minority).

-Complete compliance training is incredibly sketchy and has serious implications in terms of abuse victimization. I'm glad the field is finally starting to move away from that.

-Disability justice people absolutely need to stop supporting facilitated communication. It's been debunked repeatedly, it's abusive to people with disabilities, and it undermines a lot of valid points that people have because they also support that pseudo-scientific mess.

-ABA and other fields need to do a better job of respecting people with disabilities and not just as "self-narrating zoo exhibits". I have a physical developmental disability. At a prestigious SPED conference a couple of years ago, I pointed out that I was the only person with an apparent or otherwise identified disability at the conference. I was literally told "oh, you people go to disability studies conferences; we don't really care about having people with disabilities in our field."

 

[ClinicalABA]

Okay, thoughts... Hoo boy, this is a hornets' nest I regularly encounter, having a great many friends and colleagues in both camps, having published in both camps, etc. I've seen people from both sides absolutely trash the other side as abusive and toxic, but I think most people on both sides are generally reasonable, intelligent, and good people, with some people in both camps who are legitimately toxic and harmful.

-ABA is effective at behavior change. It's a wonderful, evidence-based science that can do and has done a lot of good. It can also be used for things that end up doing harm, and it has been--Lovaas and Rekker published studies on using ABA to treat feminine boys so that they would be more gender-conforming, with the idea that it could prevent homosexuality, for example, and early (talking 70s and 80s, so not that old) ABA programs used physical abuse as positive punishment. The Judge Rottenberg Center still uses shocks, for example, with video evidence that the essentially just shock the hell out of clients for minor non-compliance. Many current big names in ABA are on their board.

-Both sides need to stop saying "that's not ABA" when they like or don't like something. I've seen this both in ABA when morally questionable but scientifically accurate practices are being used and in disability justice circles when ABA is being used to promote something they agree with (AAC, functional communication, self-advocacy, etc).

-The question of social significance with many autistic behaviors is an interesting philosophical one--to what degree should people work to change non-harmful bx because it makes others more comfortable versus to what degree should others become more comfortable with a broader range of bx? There's a lot of pertinent parallels here with sexual orientation and gender identity (saying that as someone who's a sexual minority).

-Complete compliance training is incredibly sketchy and has serious implications in terms of abuse victimization. I'm glad the field is finally starting to move away from that.

-Disability justice people absolutely need to stop supporting facilitated communication. It's been debunked repeatedly, it's abusive to people with disabilities, and it undermines a lot of valid points that people have because they also support that pseudo-scientific mess.

-ABA and other fields need to do a better job of respecting people with disabilities and not just as "self-narrating zoo exhibits". I have a physical developmental disability. At a prestigious SPED conference a couple of years ago, I pointed out that I was the only person with an apparent or otherwise identified disability at the conference. I was literally told "oh, you people go to disability studies conferences; we don't really care about having people with disabilities in our field."

Thanks for your thoughtful and informed reply. I was eagerly awaiting your perspective. One question (and I apologize if the answer is obvious and I’m just missing it)- you reference “both camps.” Could you elaborate on what these camps are?