Autism

The Principle of Doubt

by Kristina Chew

categories: acceptance, community inclusion

Published June 29, 2009 @ 12:52AM PT

Celebrities float in and out of discussions about autism in ways that often attract attention, but impede real understanding. While feeling saddened by the passing of two pop icons who were media fixtures throughout my childhood (and of that of many of us), the inevitable focus on them has led me to reflect how little our little household follows trends and "the latest," and how Charlie himself has less than little interest in the "latest." Charlie seems certain about what he likes, and what not, and lets us know.

With all apologies to those who follow/like various teeny bopper types, it's been ok for Jim and me as parents that Charlie has no idea who Hannah Montana or the Jonas Brothers is (not that I do, either). Maybe some think it's sad that Charlie's not sharing in the cultural icons of his generation, but (the secret is revealed) I had zero interest in most celebrities when I was his age, preferring my own interests (which, for a time, meant Bach). There's a part about parenting a child who's different, a child with disabilities, that is, if I can may it, freeing because we don't have to be typical parents. We can be more of who we are.

Indeed, again and again in life with Charlie, it's been necessary:

(1) for Jim and me to learn to think outside the proverbial box (regarding employment and services for adults, as a friend reminded me in a recent comment). I think of all the times we've heard "can't do that" or "it's not possible" or "that program does not exist" or "he's never going to do that." Life raising a child who's got some pretty big needs means, we hear a lot of such statements. We try, want, and need to be positive and upbeat and in "we can do it!" mode most of the time, but sometimes it seems that you exhaust every option and there's no energy left, barely even enough to hope.

It's been equally necessary

(2) to be in sync with Charlie who walks his own path away from most every trend and gossipy concern. I cannot measure it, but a constant piece of our lives is trying (not always getting it right, but still trying) to understand his communication on his own terms. One hears regularly about how autistic individuals "lack empathy" and are unable to put themselves into another person's shoes, but are those of us who aren't on the spectrum any better able to do that? How hard have you, we, tried to see things from the perspective of someone on the spectrum?

Saturday we did something not terribly extraordinary, but certainly out of the ordinary. A friend of Jim's is directing Doubt by John Patrick Shanley at a theater outside Philadelphia and we thought we'd try to see it.

A good friend who lives in Philadelphia joined us. Jim got three tickets and thought we'd try, somehow, to each see part of the show with our friend (we've actually seen the play performed in New York years ago). This was something of an ambitious plan, as it meant that Charlie was going to have to in essence wait the time out, getting a late lunch, hanging in the car and parking lot and walking around (on the very pleasant grounds of the theatre, but it was a pretty hot day). Charlie got through it all (though he didn't want to eat in an unfamiliar Friendly's and he mostly sat in the car, while we talked (too long; other friends appeared; he became agitated). Charlie was glad to head back to Jersey, wanted a bike ride after being home for five minutes, and got very upset before going to bed.

This was very tough, as things have been quite well and peaceful with Charlie for the past couple of weeks, even with vacation from school. We knew we had diverged quite a bit from the same old same old last week, with Saturday's trip being the second to a brand new place (after going to Grantville and Hershey PA) and doing some unusual, first-time things. Had we sought to "stretch" Charlie too much?

And this is where the doubt comes in: We try so hard to see things with Charlie as they are and to state them honestly; we try to think of how things might effect him, and of what accommodations we might make. But I don't think we can ever be 100+ % certain. Belief can feel assured, and yet be imperfect.

Sunday, with that doubt in mind, we did our best to be extremely attuned to Charlie and the ebbs and flows of his moods, the impact of any noise, slight or loud, on his easily-jarred system. (A pair of noise-canceling headphones such as you wear to mow the lawn seemed to help.) We made another long car ride but this time to a very familiar place, the beach, and Charlie (and Jim and I) were as glad as ever to be there, and to be back in the waves in the one place where (so far) Charlie always seems glad to be, the ocean, vast and always changing, and always the same.

Will Charlie always be at home there? This is something I hope we---but who can be sure?---never have to doubt.