What’s in those DSM revisions? in ‘functioning levels’? in that big box Jim got?
- a 4.55am wake-up
- 1 instance of dishes-throwing, coupled with 1 instance of kitchen clean-up
- 1 "neurological storm" lasting all of 15 minutes
- 4 walks, with about a third of each walk going through a field where the snow is icy and a foot deep
And a few too many cupcakes, or at least their frosting'd parts.
I always factor in at least one "squall" when there's such a huge shattering of Charlie's established order of things like a snow day. The excitement with which my own (college) students greet snow days is pretty much the inverse of what Charlie feels about them. He'd rather have days "on" rather than "off"; rather stick to plodding routine, than the little zap of getting to know "I get to sleep in today!". It's rather anxiety that courses through Charlie, finding himself faced with a Wednesday and Thursday in which what he has to do with himself isn't the usual, established order of things; in which he finds himself not in the large environs of his school with his teachers and therapists, but in the smaller rooms of our house and with—us.
Anxiety, difficulty with changes in routine to the point that one is all but incapacitated, similar difficulties with interactions with other people: I can't think of one parent of an autistic child whom we've met who has not referred to these. My understanding of autism is, of course, from a parent's perspective but I've noted these same concerns often referred to in writings by autistic authors and self-advocates.
These are some of the reasons why I'm inclined to think of autism as a spectrum, and why I don't think collapsing Asperger's Syndrome and, too, PDD-NOS, into "autism spectrum disorder" is a bad idea. Not everyone thinks that these changes in the DSM are for the better. I suspect I'd see this whole issue differently if I were, like Emily or Mir Kamin at Blogher, the mother of a child with Asperger's. Kamin writes that Asperger's is a "subset of high-functioning autism typically characterized by social awkwardness and repetitive interests." But as Roy Richard Grinker writes in a February 10th New York Times op-ed, terms like "high-functioning" and "low-functioning" are not exactly set in stone.
When the American Psychiatric Association first recognized Asperger’s disorder in 1994, it was thought to be a subtype of autism. As the diagnosis became more common, it broadened the public understanding of autism as a spectrum. It helped previously undiagnosed adults to understand their years of feeling unconnected to others, but without bestowing what was considered the stigma of autism. And it helped educators justify providing services for children who, in the past, might have been unappreciated or even bullied because of their differences, but received no help from teachers.
Almost everyone with Asperger’s also fits the profile of the more classic autistic disorder. ………Even the best available diagnostic instruments cannot clearly distinguish between Asperger’s and autistic disorder.
People who now have a diagnosis of Asperger’s can be just as socially impaired as those with autism. So Asperger’s should not be a synonym for “high functioning.” Likewise, people with autism who are described as “low functioning,” including those without language, can have the kinds of intelligence and hidden abilities that are associated with Asperger’s — in art, music and engineering, for example — and can communicate if given assistance.
More often than not, when I read about children with an Asperger's diagnosis or talk to said children's parents, I see more commonalities than differences. Certainly, children with an Asperger's diagnosis can talk more than Charlie, often are able to do academic work at their grade level, don't have (as far as I know) the really difficult behaviors—SIBs—that Charlie has at his most upset moments. Charlie's scores on I.Q. tests are below average; his minimal language makes it difficult to discern how much he truly knows and certainly for him to communicate all that he knows to us. But regardless of whether I'm reading about Temple Grandin or John Elder Robinson, I see patterns of similarity with Charlie and his way of looking at the world, and the particular challenges he faces.
But—and I know I'm on rather shaky ground to assert this as I am after all Charlie's mother—Charlie is clearly intelligent, as you'll note if you spend sufficient time with him and are willing to allow that not being able to talk much, or to read, or to be studying any school subjects at your grade level, are prerequisites for "intelligence." Nothing much gets past Charlie: He notices everything and we're more likely than not to overlook this, as he does not communicate such. Jim and I both suspect he can read more than he shows he can when asked.
I'm not trying to say that there's anything savant-ish about Charlie or that "locked deep within" is a genius just dying to break out. But terms like "impairment" and "functioning levels" are more relative than we tend to think and, unless we see them as such, we might not allow ourselves to imagine how those who seem to have so many limits can be capable of much, much more; can indeed do much, much more.
All of which brings me to the newest pursuit we've introduced Charlie to: The bass guitar. One rainy Sunday a few weekends back, Jim went into a Guitar Center and exited with a huge box that contained Bass Guitar Kit 101. We've now added the bass and an amp to our home music center (which also includes a piano, my very out of tune viola, a few drums including a conga, and a fish tambourine). It's been a couple of years since Charlie learned to play some piano and cello, and to read some simple sheet music that had been individually written just for him. We had to put aside the cello when getting Charlie music lessons at the public middle school proved pretty much impossible. Practicing the piano was becoming such a chore for Charlie that I felt it best to let it go, lest "piano" become altogether aversive to Charlie.
Jim had introduced Charlie to Jimi Hendrix and the full gamut of classic rock 'n' roll a couple of years ago and, after hearing about Jet Fuel Only, two of whose members are brothers on the spectrum, Jim starting think Charlie should learn bass. Jim played drums in a garage band in high school, but, with neither of us knowing how to play bass, this particular plan was left hanging for some years. Then someone told Jim that learning the electric bass, at least the basics, can be a fairly simple affair and getting the bass + amp was certainly not a big challenge. Last night was the second time I tuned the bass with the electric tuner (so much easier than trying to tune my viola, may I assure you) and then Jim placed the strap round Charlie's neck.
He'd just come in the house after a walk after said neurological storm. Somehow we thought touching the heavy metal strings and hearing their low sound and feeling the vibrations would appeal to Charlie. And we were right, and now, in between the PBS kid-stuff, I've been showing Charlie videos on "how to play bass" and "play along with 'Every Breath You Take.'"
I'm ok if Charlie doesn't get too far with this (third) instrument or plays in a band (we don't have a garage anyways and "cluttered" would be a euphemism if applied to our basement), but nothing like—here comes the pun, you knew it—feeling those vibrations, especially when they're good.