Between Pity and Piety

The thirteen-minute documentary Autism Every Day that premiered at an Autism Speaks fundraising event has stirred up considerable controversy in the autism community, highlighting the fragility of some of the alliances that we have built to sustain ourselves and our families.

As I've read some of the commentaries, I've been doing what I frequently coach Sweet M on:

Breathe in . . . 1 . . . 2 . . . 3 . . . 4 . . . .

Breathe out . . . 1 . . . 2 . . . 3 . . . 4 . . .

I liked the film. Yes, as has been pointed out, it probably ought to be called Autism Moms Speak. And yes, it's a portrayal of the challenges that face autism families with little if anything describing the unique satisfactions that come from parenting a child in the spectrum, no doubt with the goal of evoking pity and donor dollars. And yes, it is heartbreaking — and not a little disturbing — to hear a mother describe her suicidal-homicidal ideation within earshot of the autistic child whom she identifies as the source of her despair.

And still, I liked the film.

Some people have described Autism Every Day as a pity party, where the mothers who are profiled (and by extension, their families) are set up as objects of pity in an attempt to drum up donor dollars, much the way that maudlin Save the Children commercials on late night television attempt to tug at our heart and purse strings. And that's probably true, too.

And still, I like the film.

I liked hearing about the challenges that other autism moms face. And while I've never contemplated driving off the George Washington Bridge — as one of the moms in Autism Every Day reveals — that is probably only because I don't have a car. I have felt that despair — especially, but not only — in the days before I knew there was something called an autism community.

During the Chinese cultural revolution such revelations were called "speaking bitterness." And in the women's movement, it was called consciousness raising. The goal is to build awareness, understanding, and solidarity. Autism parents, and autistic people, and autistic parents each have their anguish — and triumphs — to share.

At one point I was interested in thinking about autism parenting as an extreme sport — extreme parenting. When I heard Susan Senator read from her book Making Peace with Autism, she mentioned that the earlier title of the book included something about Extreme Parenting. But her publisher wanted a more upbeat title, and Susan described how she and her husband joked about acquiescing to the publisher's request, and then making peace with the title Making Peace with Autism. Publishers, like Hollywood film studios, are often in the business of manufacturing happy endings.

We live in a culture that requires a kind of instantaneous transformation: lemons are to be churned into lemonade even before we taste the sourness that life can sometimes provide. The writer Michael Ventura suggests that this is part and parcel of a consumer culture that needs to render everything appealing and uniform. I'm as guilty as the next, dubbing my own little autist Sweet M, when she is, often as not, sweet and sour.

Do we want to have our representations of ourselves, and our lives, and our children be subjected to some representational straitjacket issued by the Department of Silver Linings, where every image is tested for its sunny-ness factor?

Of course this is not a new debate. It goes on in nearly all struggles for social and economic justice — the debate over positive images. Do we want to insist on positive images — role models — in the interest of counteracting the stereotypical representations of oppressed groups? Or do we want to encourage complex, multidimensional depictions of our experiences, and of the experiences of our children? I guess you know where I'd stand on that.

Parenting kids on or near the spectrum requires walking a fine line between pity and piety, two words with the same root. With pity, one looks down. And with piety, one looks up. No one likes to be the object of pity — those who are pitied are looked down upon; they are render pathetic. And yet to avoid this, sometimes I feel that some of our representations of ourselves and our children risk running toward the pious, marked by a sense of duty and self-sacrifice that is, for me, equally discomforting.

I long for an intersubjectivity that relies on equity and equality, where I'm neither pitiful nor noble in my parenting, but a person breathing in and breathing out, and sometimes reminding my own Sweet and Sour M to do the same.

Keywords: autism • Asperger's Syndrome • ADHD • learning disabilities • special education • obsessive-compulsive disorder (OCD) • parenting • family life