Wednesday, November 16, 2011


This post was triggered by "Quiet Hands", an incredibly moving post on Just Stimming by Julia Bascom

Hand-over-hand "guidance"
I realize that almost all child-rearing is a balance between a kid's comfort zone and the pain of stretching and growing. I believe that finding the balance of growth and safety is always hard, but it is even harder when you're working with a kid like msk, one who doesn't have the words to push back when you force a stretch that is just too painful.

We've made choices about msk's activities (therapy in behavior analysis speak) that probably put us on the coddling side as compared to some "Autism Warrior Mothers" ala Jenny McCarthy. Even though I have big issues with her approach and statements, I've got to admit that sometimes I feel guilty about not pushing msk harder, not attacking some of his autistic tendencies that hold him back, even if doing so makes him seem frustrated and overwhelmed.

We never got on the ABA (Applied Behavioral Analysis) bandwagon, partly because we didn't have the insurance coverage at the time for the massively expensive endeavour, partially because we have two other kids and a job and responsibilities that make the kind of time/energy commitment seem too hard, and partially because ABA just felt too coercive, or at least manipulative. It's exactly the kind of control and "guidance" that makes msk flip out. Still, when I see how hard some things are for msk, when I worry about what level of independence he will be able to achieve, I wonder if we should have tried harder to get msk into some sort of ABA program. The guilt usually comes after reading a quote like this - "ABA is widely recognized as the single most effective treatment for children with autism spectrum disorder and the only treatment shown to lead to substantial, lasting improvements in the lives of individuals with autism."
msk won't tolerate hand-over-hand, but hand pictures are OK

By chance I came across this post by an autistic adult. She writes movingly about the pain of being forced to have "quiet hands", of the suffering involved in coercive ABA therapies. It made me feel more sure of our choices.

I'm sure it's different for different individuals, and in no way am I saying that a choice to pursue ABA is a bad choice. I'm just saying that self-determination, even if you're on the severe end of the autism spectrum, is important.

It's something I need to keep thinking about as msk  becomes a teen.


  1. Definitely a recipe for guilt. Wow. But if you knew it would work in advance, you totally would have done it. You still don't know if it's the right thing. My kid has some problems as well. As long as we are constantly assessing the situation and responding to our children, we're doing good.

  2. It seems like stories of PTSD from autistic adults who were overwhelmed by intense ABA as children are starting to come up. I think respecting a kid's indication of discomfort is really important. Even if someone is non-verbal, it doesn't mean you can't pay attention to other communication that they are putting out.


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