This is the central dilemma that I face when, Charlie asleep (melatonin has been working), I sit down at night to write:
If I describe the ugly, bad, smelly and messy of Autismland (here is one such account whose language occasionally approaches the incantatory quality of Howl), what is my intent? To attract not only attention but pity, fear and sighs? To say, this is the awfulness of autism? To garner sympathy?
And if I describe words said ("Huggg!" "Canneye havv hum'uss") and the sun-driving-away-every-storm-cloud smile; the good, the beautiful (the ancient Greeks have a special term for this, kalokagathia---"beautiful goodness" and "good beautifulness"); the accomplishments---the miles biked, the piano playing, am I just being a braggart steeped in denial, trumpeting Jason McElwain-esque moments that only some few autistic persons---not the ones with "severe, full-blown autism"----do?
My son has full-blown autism. My son did all those things evoking "autism nightmare night and day" (well, not the smearing of that stuff on the walls and furniture: he has not had any to smear in a number of days and I strongly suspect his stomach must have been hurting); in the car as I drove him back to school after a fine visit at the dentist; at school and especially at the end of the day so that his teacher was ready to take the bus home with him; at home, on a walk, in the kitchen where the linoleum dug into my knees. I have a lot of hunches why, that dentist visit---Charlie had to be held twist-tight by the hands as his teeth were polished, but it was real progress over previous visits---changes in medication----serious health issues in both of Charlie's grandparents who we live with----a warm January day of thick fog and mist----
How, you say, is she going to twist this disastrous day into something "posautive"?
As I sit here typing and drinking waterchestnut tea (my mother says it's leng, that's Cantonese for "cool"), I think of Charlie writhing in and out of my hands and I know what it was like for Menelaus, the King of Sparta and husband of Helen of Troy, to try to hang onto Proteus, the Old Man of the Sea, in the ninth book of the Iliad or like Aristaeus, a minor god who was the deity of the farmer's arts and the inventor of the plough in the fourth book of Virgil's Georgics. Both Menelaus and Aristaeus are told by a sea nymph that they must catch Proteus sleeping in his cave and hang onto him to find out some information, some prophecy, some wisdom, of what they need to do.
Proteus is a tricky one and changes shapes:
of shapes and faces he puts on he plays
suddenly bristling boar dark dismal tiger
scale sheathed snake lion tawny maned
makes the cracks of a flame.....
I don't know I managed it but I held onto my Proteus boy and, after Jim came home, we got ourselves into the car and drove and chanced upon the Nautilus Diner, where Charlie was the Gent, sitting in a booth with fries and coleslaw and a burger, and several requests to have Jim dab it with ketchup. ("Humm'uss yes!" "Pal, it's ketchup." "Cassupp. Cas'ppp." "How about 'can I have ketchup, Dad?'" "Caneye havv---havv--" "Ketch-chup." "Cassup, cassup, yes!"
"Dilemma" is from the ancient Greek words di, "two," and lemma, "premise, thing taken." When you write about life---about the every day---of autism, you do indeed have a dilemma, how to get in all the ugly, bad, etc. and also the kalokagathia. Some might strive to keep these separate----as if the latter are "things to remember" and the former "things to forget." Myself, I like to mix things up; I like to stir the pot, sully the neat-cut strands of noodles with a spoonful of brown sauce, turn up the heat so the flavors meld together and the bits of minced ginger dissolve.
A tinge of sour with bitter on the side, sweet, salty:
This is the fragrant aftertaste of another day in Autismland.