What kind of therapy does Tangles receive?


Last time I introduced you to a 10-year-old girl I call Tangles, who has ataxic cerebral palsy and mixed partial seizures, and diagnoses of global developmental delay and profound intellectual disability.

Here’s point one of my frustration about Tangle’s situation. I’ve described the kind of ABA therapy that Fishy [whose primary disability is also cerebral palsy] gets — an intensive, several-hours-a-day training program that breaks physical, social, and communication skills down into tiny individual steps and trains him in them, piece by piece, by rote, with rewards for every successive approximation of the “target behavior.” Essentially, if I may be crude, animal-training tactics applied to people. The best non-academic primer on ABA you could read is probably Karen Pryor’s “Don’t Shoot the Dog!”

[EDIT: A good friend just yanked me aside and pointed out that the language I just used is triggering. Let me see if I can briefly sum-up why before continuing. I used the “dog training” metaphor for ABA because I think most people are fairly familiar with how animal training is done. Oddly for me, I didn’t consider the implications that would have for most people, namely:

  1. Disabled people are compared in often intelligence and ability to animals. THIS IS NOT OK, ever, nor is it ever accurate. A human being is a human being, period.  Ironically, one of the other posts I’m working on writing addresses a time I caught myself thinking something along those lines and was horrified at myself.
  2. Drawing the parallel between ABA and animal training reinforces the truly screwed up notion that adults, particularly professional adults, have an innate right to the authority they tend to wield over people with disabilities and children in general. Anyone who has ever been a child should realize how problematic that assumption is. No one deserves that kind of power over anyone else. And no one should ever mindlessly obey another person.
  3. The implied comparison between disabled people and animals makes people forget that there is always a reason (and almost always a good one at that) why people do the things they do. When I took a class on behavior modification in college, a lot of focus was put on the “Analysis” part of ABA. They told us to ask “what purpose does this behavior serve?” and “why is the person doing this?” first. Apparently, that bit has been thrown out the window by most ABA therapists these days, who just go around trying to change the behaviors of their clients without ever trying to understand them first, dismissing anything they dislike as Failure To Comply or similar. To the best of my knowledge, this constitutes Doing It Wrong.]

ABA is a therapy whose name triggers horror and fury in most autistic people, and for good reasons (many of which are nicely explained in the blog post “Quiet Hands” — and a more academic review of why it may be a really bad idea is: http://gernsbacherlab.org/wp-content/uploads/papers/1/Dawson_AutisticLearning.pdf). I don’t think it’s always a bad therapy, even for autistic people, and it can be done in much better ways than what Julia describes [EDIT: I won’t condemn the theoretical basis behind ABA– I think it can be a useful tool, as I discuss here. What’s wrong is HOW it tends to be used– to try to make autistic people act and appear neurotypical, which is very, very wrong. But it doesn’t have to be used that way] (for those further interested in a situation in which operant-conditioning-based behavior modification had a more positive outcome, see the intriguing  documentary “Harry” — note, “Harry” takes place long before ABA was developed).

But for Fishy, this therapy is perfect. For someone who struggles to master basic physical skills– the very simplest skills like pointing and moving that will be his gateway to independence and communication and self-empowerment– breaking those skills down to small manageable pieces may be the best, maybe even the only, way to teach them without the child giving up in frustration.

And Tangles, I found out, doesn’t qualify for this therapy.

Because she isn’t diagnosed as Autistic.

I raged for several days straight at anyone who would listen when I learned this. How can this therapy be covered by insurance for people it damages and not covered at all for someone it would help so much? What is wrong with the world?

I don’t know if Tangles is on the spectrum or not, but I know the option was summarily dismissed by whoever evaluated her because she seems to enjoy engaging socially. As if that were an exclusion criterion.

Fishy’s diagnosis of autism may not be permanent– I suspect that many of the delays he shows are purely due to motor-skills issues, not really innate differences of cognitive style, which may explain in part why ABA is so effective for him. I’ve spoken to Tangles’ mom a little about whether it might be good for her to get a different doctor to evaluate Tangles for an autism diagnosis so that ABA can be covered for her too. At the same time, I worry that an autism diagnosis might limit her options in other ways and put her at risk of suffering the more abusive aspects of ABA. On the other hand, she’s already at risk of a lot of getting a lot of abuse (in the name of care or otherwise, simply because of how profound her disabilities are). Much, much more about that later.

So what has been done for her so far? Not enough.

At age 10, she has only just recently started receiving music therapy and speech therapy. Some attempts were made previously to teach her sign language and PECS (I don’t know when or for how long)… but at the time, she probably lacked the manual dexterity to use those methods even if she understood them. She’s also finally learning to sit in a classroom, at her new school, whereas the previous school claimed it was impossible to teach her and simply buckled her into a chair.

It isn’t too late for this sort of intervention. But it’s later than it should be. Why has it taken so long? Well, for starters, because presuming competence (a term used by the autistic community to remind people that lack of speech does not imply lack of intelligence) is easier said than done. In the following entries about Tangles, I’ll go into this in more depth as I take you on a tour of my experiences with this girl and how my views about her are gradually evolving. I see things in her now that I couldn’t possibly have seen when I first met her. And I know I still have a lot to learn.

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