Yes He Knows (about those “hfa/lfa” terms)
The seeds of her storytelling had been planted much earlier, back in Minneapolis, when the young Karr was stumbling through college. She takes a job teaching poetry at a group home for fairly functional retarded women. She loves her students’ unfiltered reactions to the power of the poem. “Such a small, pure object a poem could be, made of nothing but air, a tiny string of letters, maybe small enough to fit in the palm of your hand,” she writes. “But it could blow everybody’s head off.” That ephemeral power is also packed into this very funny, very serious book.
Ummm. "Fairly functional retarded women": Where to start?
I've long been wary of using the terms "high-functioning" and "low-functioning" ("hfa, lfa") in talking about Charlie, as these terms only provide the barest one-dimensional sense of the person he is. As Dora Raymaker and I wrote in 10 autism controversies on Change.org:
The concept of "functioning levels" has always been used as a way to divide the autism community and to compete for limited resources, with some parents saying that their "low-functioning" child is totally unlike an adult with Asperger's, and that "severe autism" should be considered a completely separate disability. But the very notion of functioning levels is an ambiguous and even amorphous concept. What "high-functioning" and "low-functioning" mean is much less precise than those terms are often taken to suggest. HFA — "high-functioning autism" — is stereotypically associated with being at the "mild" or "Asperger's" end of the spectrum, and LFA — "low-functioning autism" — with having "severe autism." But what is "functioning" based on, after all: speech or verbal ability? IQ scores? The ability to appear non-autistic? Academic ability? Adaptive functioning? Just because an individual is of above average intelligence, gets into college, and so forth, does not mean that that individual might not struggle to have a job, be in a relationship, and live on her or his own. Rather than discredit the experiences of autistic adults as having "nothing" to do with that of a "severely" autistic child, it's important to see how there are many similarities, in responses to sensory stimuli and in difficulties with communication, and how the concept of the autism spectrum helps our understanding of autism.
Jim and I know that Charlie is going to need supports throughout his life and that he has a whole lot of challenges due to his neurology, his cognitive challenges, and much more. Neither of us have on any rose-colored glasses and Charlie's past year of difficulties at school and in general have highlighted the extent of what he faces throughout his life, and of what we, as his parents, must face and think about. Charlie's new school is a center for autistic children aged 3 – 21 only; it is a more restrictive setting, although the situation at his now former public middle school (the blue plastic head thing, for a start) was heavily restrictive in and of itself. With Charlie now in such a more restricted setting for his schooling, Jim and I feel the onus even more of taking him into the world, of him being out and about in the world.
And that's why reading phrases like "fairly functional retarded women" galls even more than it does. Call one over-sensitive, but one starts to imagine bystanders looking at one's own child and thinking "there goes a fairly functional retarded young man." I can't decided (not that I really want to) which word rings more harshly, the "r word" or that word "fairly," which might have been used to blunt the negative connotations of the "r word," but has a damning effect of its own. Are these women being thought of as "functioning lite"? The small excerpt from Karr's book suggests that they are seen as uncomplicated and, with their "unfiltered reactions," somehow "purer"=—a not unusual reference to the intellectually disabled as being somehow more attuned to a more authentic, simpler, truer experience.
I have caught myself many a time suggesting that Charlie experiences such. I can't say whether or not such is true but do think that his possibly sensing such further speaks to how much Charlie indeed senses, intuits, understands, gets.
Mindful of his awareness of the big Monday ahead, Jim and I were very watchful of Charlie Saturday, and all the more so because it was a very wet and rainy day due to a Nor'easter. Charlie and Jim still got in a bike ride and then we drove to a not too near us public library, to retrieve a book. It was only 3.30pm when we got home but Charlie was already asking ardently for "diner."
We actually hadn't visited his favorite diner for weeks. The last time we drove to it, Charlie had gotten as far as the door and said "no, no" and been very agitated. He had not asked to go since. So Jim and I raised our eyebrows at his request and said we could go but, it was kind of early.
Charlie assented to another bike ride, as the rain had stopped. He helped himself to a snack when back and Jim decided to go for a run to the park. Charlie consequently had to wait before getting his diner request: He first stayed inside and on the couch, and then went down to wait by the car, and then in the car. Jim came back and, around 6.15pm, we headed to the diner, Charlie calling out this way, that way. He ran into the restaurant and found his preferred booth empty. He ate the saltines that came with Jim's and my bowls of soup, and a couple of spoonfuls of Jim's soup (Manhattan calm chowder). He polished off his cole slaw and all of his hamburger (both well ketchuped) and half his fries. Back home, he was exuberant—skipping at times—for the rest of the evening, pacing animatedly back and forth as the Disney CD played.
He'd clearly wanted a return to his old haunt and glad he could tell us.