My Autism bookmark folder contains about fifteen blogs I follow intermittently. I go through spells of reading and not reading. Spell as a verb—to signal or forbade. Spell as a noun meaning incantation, but also attraction or influence. And maybe especially spell that conveys a season or course—and more negatively, a fit or attack.
Autism advocates, and especially self-advocates, say autistic people shouldn’t be labeled as severe, moderate, and high-functioning because disability manifests itself in very different ways. Just because you can recognize a disability (inability to speak or write, mental retardation) doesn’t make it anymore real than a disability you don’t (social and communication impairment, anxiety, sensory over-stimulation). The latter can, in some ways, cause more stress to the particular individual struggling to carry on in the world. The presumption of “normalcy”—or relative normalcy in comparison to other autistic individuals—is meant as a compliment but can undermine a “high-functioning” autistic’s experience of the world. By undermine I mean delegitimize their difference.
Temple Grandin, a well known autistic, often quotes the mantra her mother repeated to teachers, friends and psychologists on Temple’s behalf: “Different, not less.” That’s what I want for Jonah. That’s what I want for myself, in terms of Jonah—to recognize his difference and not unconsciously treat him as if I could simply discipline the autism out of him. Because I can’t, and doing so will only wreck the both of us.
But I find myself doing it anyway. Which is why my Autism bookmark folder contains about fifteen blogs I follow intermittently. About half of them are written by parents of autistic children. I need to hear from them. About half are written by autistics themselves. The older J gets, the more I need to hear from them. One day he will need to find them for himself; until then, I will listen to them for the both of us.
We all struggle with the idea of normalcy. It’s one of those resistances you can’t help but bang your head against from time to time. That urge to purge ourselves of our difference so that we can fit in or simply have an easier time of it in the world. Which is an illusion of course. There is no easy time of it in the world. I discovered an album this week called Dryland, by Chris Pureka. The chorus from one song plays back to me now:
Life is cruel and it’s clumsy
(but we never explain)
I wish I could say that it’s better than that
(why we treasure our secrets)
but this is our time
(how we’re in love with our sadness sometimes)
this is all that we have ’til we turn out the lights…
“Cruel and Clumsy“
I can, with some certainty, say that it is better than that. It’s not cruel and clumsy all of the time, though I’ve gone through seasons when it felt that way, when I was in love with my sadness sometimes. I am incredibly fortunate, of course, to have been given and to have felt deep love from family and friends, consistently, with force. That’s certainly not a given, and I know people suffer deeply for lack of it.
Sometimes Jonah will bang his head on a table, into a doorframe—or repeatedly smack his forehead hard with his hand. It’s just that life gets too hard. Maybe it feels a little cruel to him, how he can’t process it all, can’t make sense. It must feel like an assault. Is he trying to sub-consciously bang the difference out of himself?
To a much lesser degree, I recall the impulse to keep my difference hidden in middle school and high school. I would only show myself selectively, to the people I felt the safest with (thank God for band and youth group and family). I gradually became more whole, less hidden. Becoming takes a whole life. The novelist and poet Jim Harrison writes another version of Pureka’s “Cruel and Clumsy”:
…On a cool night there is
a break from the struggle of becoming. I suppose that’s why we
sleep. In a childhood story they spoke of the land of enchant-
ment…To the gods the moon is the entire moon
but to us it changes second by second because we are always fish
in the belly of the whale of earth. We are encased and can’t stray
from the house of our bodies. I could say that we are released,
but I don’t know, in our private night when our souls explode
into a billion fragments then calmly regather in a black pool in
the forest, far from the cage of flesh…Of late I see
waking as another chance at spring.
from “Spring”, in Songs of Unreason; © Copper Canyon Press
I wake every morning with another chance at becoming a better mother to Jonah. Someone who accepts and does not judge but does not relinquish her own work of becoming. And that is the best I can ever do for my children and myself. We spell out ourselves, we cast our spell on others. In fits and starts. Waking and sleeping when the struggle of it wears us out. Waking again.