Conflicted
I’m reaching out because I feel at a stand-still.
I’m currently enrolled in an ABA graduate program, and I have learned a lot so far. My issue with the program is their stance on stereotypy.
We have a student who emits a lot of stereotypy–nothing self-injurious, but definitely present. He jumps up, shakes his hands/legs, and scrunches up his face. He does this while playing, eating, etc.
My problem is that I am instructed to tell him to have “quiet hands,” and to only give him attention/praise when he doesn’t engage in these behaviors. I reallllly hate this because it is a method of self-soothing, and he isn’t hurting himself or others.
Does anyone have any literature–or personal experiences–on the benefits of emitting stereotypy? I really don’t want to suppress his stimming because I feel that it goes beyond the realm of helping them socialize (such as teaching sharing and communicating with peers), and crosses over into the “making them seem neurotypical” side.
oh, hey, figured out how to make my browser show reblog buttons
Long story short: I know lots of adult autistics, and this crap is why they mostly regard ABA as horrifying abuse.
What are the benefits of adjusting to a comfortable position? Blowing your nose when it’s stuffed? Scratching at itches? They make you more comfortable and reduce stress and make you happier and more effective at basically everything. And consider the phrase “talk with your hands”, as applied to, say, different cultural norms, like people who guesture expansively while talking. (I’ve seen this in ads for Italian restaurants as a way they express the kind of atmosphere they aim for.) A lot of these are things non-autistics also sometimes do!
So basically, your instincts are right, your teachers are horrifying torturers, and I have no good ideas on how to suggest improving this situation. But also, be aware that in general, ABA’s entire model is based on… well, you know the myth that autistics have no “theory of mind”? ABA is based on having no “theory of other mind not identical to my own”. If a person isn’t just like us, they must not be aware or intelligent. It’s nonsense. The people I know who have had good results trying to help kids learn to blend in when it’s socially necessary do so by explaining the thing. “There’s a convention that people expect you to behave this way because if you don’t you seem different and they don’t like things that are different. So sometimes it’s useful to be able to stop those behaviors for a bit so people feel more comfortable.”
It’s a budgeting thing. I can totally act neurotypical-ish for quite a while, but it burns spoons and makes me less productive. I do it when it’s useful enough to justify the costs.
I broadly agree with this, but my understanding is that describing ABA — at least in the strict Lovaasian sense — is premised not so much on “no theory of mind not identical to my own” as “no theory of mind, period, except as a black box taking stimuli and contexts for those stimuli as inputs and generating behaviors as outputs.” Or, to put it another way, “no theory of phenomenal consciousness,” or “no theory of qualia.”
Because behaviors are observable by the practitioner and qualia are not, which makes attempting to produce joy or about causing suffering unscientific.
Statements the subject makes about their experiences of joy or suffering are observable, of course, but those are themselves behaviors, and can be targeted for modification just like any other behaviors. Trying to make a child be happy is unscientific; trying to make a child smile, assert that they are happy, and/or tell their parents how grateful they are for the therapy they have received and how greatly it has improved their lives, on the other hand? Those are all perfectly valid goals, as success in achieving them can be assessed in an objective fashion.
It’s not that autistic kids (and gender non-conforming kids — Lovaas was also a pioneer in scientific conversion therapy) specifically are p-zombies. It’s just that anyone could be a p-zombie, and so there’s no reason to treat them as anything else.
So why modify a kid’s hand-flapping or feminine mannerisms instead of their parents’ attitudes toward those traits? Well, because the behavior that the practitioner wants out of the parents is for them to give the practitioner money and praise for their successful correction of the child’s deviance.
I’m not sure if this is really more or less horrifying than the version you describe, but it’s certainly different.
Of course, there’s the further complication that since “ABA” is considered to be an evidence-based treatment for autism, many insurance companies will cover “ABA” and not anything else. Which creates an incentive for people who are doing anything that could reasonably be described as analysing behavior and applying the results of that analysis to call what they’re doing “ABA,” even if their attitudes toward phenomenal consciousness are vastly different from Lovaas’s.
Which then muddies the waters further in trying to discuss how fucked up ABA in the strict sense is, since there are people out there who can honestly say “I received ABA, and it was nothing like what you were describing.”
OP, since you asked for references, here’s a few I dug up:
This recommendation sheet from the Children’s Hospital of Philadelphia Center for Autism Research This more casual but well-cited article on the benefits of stimming for autistic people This well-argued opinion piece, “A Cognitive Defense of Stimming”, by an autistic woman. The other thing I’d add is that you’ve likely been lied to about the evidence base for ABA. Other people I’ve talked to who were trained in ABA were taught that ABA is the only evidence based treatment for autism, than ABA has been shown to be better than other things, and that ABA has a good body of high-quality evidence supporting it.
These, by the standards of any other disorder, are lies.
Here’s a paper from 2003 pointing out that there’s no good evidence that aba is better than other things http://www.gernsbacherlab.org/wp-content/uploads/papers/Gernsbacher_Scientifically_Proven_JDLD_2003.pdf
There’s a lack of RCTs in ABA literature. This means that when you have a group of kids, who have improved over the years they’ve been given ABA, you can’t determine causation. The RCTs which have been done are typically very small, and don’t show the huge benefits that low quality “studies” do. Standards for acceptable treatment are apparently lower for us than other people. http://autismcrisis.blogspot.co.uk/2017/11/what-history-tells-us-about-autism.html
Here, from michelle dawson, you can find a discussion of a high quality autism intervention study http://autismcrisis.blogspot.co.uk/2010/08/making-autism-research-history.html . ABA does not yet have this level of evidential support. Ask yourself why you haven’t been told this.
Also ask yourself, why, for an intervention that’s been occuring for over 20 years, no one has done an RCT followup – to show that ABA has benfits long term. If a treatment doesn’t have a benefit 5 years down the line, is it worth it?
Ask yourself why this method of treatment is acceptable for autistic children, but neither widespread or acceptable for other groups? What about us makes it ok to treat us like this?
You can show with ABA that it’s usually possible to dog train a child out of a particular behaviour. But you haven’t shown that it’s beneficial to the child. That’s an assumption in the “socially significant behaviour” thing, not a fact.
Also, our movements are atypical in lots of ways. For some of us, happy flapping is equivalent to smiling. Imagine someone trying to dog train you out of smiling. And – this is what you’re describing. You’re defining a child “scrunching up his face” as stereotypy?? That sounds like a slightly odd facial expression, which is what you’d expect for a child with a neurodevelopmental disorder that affects motor things. Because autism is not a behavioural disorder.
Imagine an adult has the power to decide which of your facial expressions they don’t like, and then spend hours every day bribing and punishing you until you don’t make it anymore. Would you look back on this fondly?
And then there is the extremely harmful aspect of compliance training.
I can’t set boundaries reliably. When I do manage the huge effort to do so, I can’t maintain them. Ever. In any circumstance. I don’t have a ‘no’.
And what happened to me was a far less intensive or organized attempt to correct my behaviors–I was just an undiagnosed autistic kid in public school. No one ever said ‘quiet hands’ it was just ‘stop that’. It was being bullied by classmates and teachers for being ‘weird’. The results are that I was taught my limits and needs are wrong and irrelevant. All that matters is keeping people around me happy.
This has lead to all kinds of problems and abuse and people having no idea that they are hurting me because I can’t tell them. Because if I’m scared or uncomfortable it’s MORE important to keep people around me happy since if they shout or make even more demands that would be worse, and because I just don’t have the ability to go against years of being conditioned to do what I’m told to, to view my body and mind as wrong and irrelevant.
I’m now in therapy to UNLEARN all that. It’s not really going all that well. My therapist has to always remind me that I don’t have to suffer, I don’t have to do things that hurt me. It’s confusing because that’s not my experience. My experience is that everything has to hurt or it makes people angry at me. They will punish, or with hold things.
ABA is an intensive, relentless, and organized version of what happened to me. The results are thus going to be worse.
NTs stim. They do it most when they are stressed and in distress. I’m not denying we do it in other circumstances besides that, but we also do it when in distress. You are trying to train someone out of potential a stress behavior (I never happy flap, I flap in distress), a coping mechanism, and a signal that maybe things are not ok. All that will ever do is harm.
We need our ‘no’. We need to be able to listen to our bodies and minds and know we are valid. That everything doesn’t have to hurt and that compliance is optional.
Just another WordPress site