Monday, March 17, 2008

What Was She Thinking?

Many people lately have been talking about Hannah Poling, an autistic girl with a mitochondrial disorder whose parents have received compensation because she regressed after vaccination at 19 months. I was thinking of blogging about how mitochondrial disorders are extremely rare, how the vaccinations she received were much better than getting one of the illnesses they were intended to prevent, and how simple measures such as reducing fever, ensuring that the child eats plenty even when sick, and spacing out vaccines (she got 9 at the same time) could prevent other children with mitochondrial disorders reacting badly to vaccines.
But after watching the videos, I've thought of something else. I watched this 9 year old girl sitting there, between her parents, as they talked about the vaccines she got and how they affected her. I heard her parent describe all the ABA treatment she got. I saw the pained look on her mother's face, the 'protective mother of a hurt child' body language she gave out. I saw a girl who seemed a lot like me and many children I know. I saw a girl who talked with her mother about the picture she was drawing, was bothered by some kind of microphone or something that she was wearing on CNN, and had movement quirks typical of autistics, more prominent but similar to my own movement quirks.
My big question is: What was she thinking? How did she feel? What was it like for her, to hear her parents describe her 'descent' into autism, to be a silent observer to her parents complaining about her behavior and expressing their pain?
And then I think about the broader context. She received ABA, so I think about her sitting at the table, putting up with (or protesting) someone giving her an unending series of commands. She lives with these parents every day, so I think about what that means. She probably hears them explain her problems to doctors and teachers and maybe even strangers. And how do they react when she acts strange? If she expresses an unusual desire, like the boy who wanted to dress up as a lamppost for Halloween? They're clearly quite loving, especially her mother, but they've spoken publicly about her being damaged, with a lot of pain evident. Do they express this in their everyday lives, or are they more like the mother of an autistic boy who told my father 'this is as good as it gets' and apologised for him not being a typical birthday guest, but was really only putting up a defense because she didn't realise we were so accepting?
So, my blog entry, rather than being a bunch of facts, is really more a bunch of questions, about the person most centrally involved in this case, but whose viewpoint has been considered the least. What is it like to be Hannah Poling? What was she thinking while CNN videotaped her?

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