Once I got into work today---late because I stayed at home while Charlie had an early ABA session, to check in with the therapist--one theme dominated, as I realized during Latin class. We were translating Catullus' poem 72 and I was explaining the meaning of quondam: "It's 'once upon a time'--no, that's olim, quondam is at some time, once. Olim is like at the beginning of a fairy tale."
"Fairy tales! You're thinking of Into the Woods!" said a student. (And I will announce that Into the Woods will be performed by Argus Eyes of Saint Peter's College starting tomorrow, and that my student is the evil stepsister.)
I realized I had certainly had fairy tales on my mind, not willingly. Late last night I got my first look at the National Autism Association's Escape the Hopelessness campaign with the butterfly movie. The short movie begins with a child's voice saying "Once upon a time / I opened a door of darkness" and then depicts a metmorphosis, from child-like-a-caterpillar-caught-in-(autistic)-darkness-in-a-cocoon to (recovered) child-breaking-free-and-flying-away-on-butterly-wings while saying "I thought I'd never escape."
The NAA movie (the "mutant-insect ad campaign") relies on an "ugly duckling" story, in which an ugly creature is transformed into a beautiful creature--a swan--admired by all; on a narrative familiar to us through fairy tales of monstrous Beasts transformed back into their true (human, handsome) selves thanks to the love of some Beauty. The NAA movie also uses outdated autism stereotypes, such as the notion that an autistic child is like a changeling left in the cradles by trolls, who have stolen the real child.
And they all lived happily ever after.
The NAA folks who made the "mutant-insect ad campaign" would seem to think that, to have the happy ending, a child must "escape from autism," as if autism were equivalent to Alcatraz or (to continue with the fairy tale theme) to a child being under some witch's spell--some enchantment--that takes away their personhood and personality.
And The Uses of Enchantment: The Meaning and Importance of Fairytales--including that "many adults today tend to take literally the things said in fairy tales, whereas they should be viewed as symbolic renderings of crucial life experiences"--is a book that Bruno Bettelheim, popularizer of the refrigerator mother theory of autism, was also famous for. And while the NAA's mutant-insect movie is the product of digital technology (to splice those wings onto that child's body), the overall setting and the brief narrative recall nothing so much as a Grimm's fairy tale, of children lost in the woods and hoping for salvation or at least a gingerbread house.
Do we autism parents too ardently seek out a standard, familiar narrative of development, "recovery," growth for our children, at the end of which is a fairy-tale ending? Even as we are saying to ourselves, I love my child as he and she is, who she and he is, there is so much for my child to learn. If we do (and I suspect we all do, just a bit and a little, at some point), the lesson we can continually learn is that life in Autismland is always about living the unknown tale, the different tale, the tale whose "the end" I may never know.
Fairy tales have many elements of fantasy in them and (as a librarian colleague said to me as I ate a fast lunch), "fantasy is not science fiction." The conversation had been about The DaVinci Code: "If it's a book people are reading on the PATH train, good!" and segued into my friend giving me science fiction book recommendations while objecting to the genre of fantasy:
"Fantasy, now, so many of your books are like this: There's a beautiful princess locked up in a castle and she has magic powers and is guarded by a terrible dragon, and she has a love interest who is a bad guy, and she has to go on a quest to get the magic jewels and it turns out the dragon has magic powers too, of course, and it can fly too, and she's on a rocky isle and there's a spell cast over her which only someone--say a swineherd--can break, but they have to acquire this magic sword and the dragon has possession of it, and the princess knows the secret to get it but...."
There was more, but I had a 1pm class to teach.
There is more, to the mutant-insect movie, mutatis mutandis.
In the movie starring a certain boy with autism, in New Jersey, there's hour-long walks in the park with his grandparents and a trip to the mall for shorts in the trendiest colors (bright orange) and lunch at Johnny Rocket's; two ABA sessions with a focus on teaching Charlie the magic of reading; a ride to Walgreens to pick up a prescription refill and a request for "sushi" that is turned down (Charlie had already eaten dinner) and shrugged off; "stairs! hot showah, jamas in on, pants on!"; playing with my mom's wristwatch; running to raise the window shade at any noise in the street signalling "Daddy home! yes" with a face smoothed of anxiety-freeze-wrinkles.
There's a story that resists fitting into the usual matrix of narratives, of tales of the normal. There is a happily ever after, because Charlie is our son with autism, not an angel, not a butterfly, not a fairy tale boy-hero shoving a witch in an oven. Charlie is Charlie, once, today, and tomorrow.
A life lived "happily ever after" with Charlie is happening in the here and now, which is where the real hope is.