Picturing Autism, Part 1

In a book called Weaving a Family: Untangling Race and Adoption, the sociologist Barbara Katz Rothman has written movingly about her experience of parenting an adopted daughter who is African American, when Rothman is herself ethnically Jewish and racially white.

She describes the social interactions in which she and her daughter Victoria have to announce and "perform" their relationship of mother and daughter because our racial stereotypes prevent us from seeing them as such. The guy at the ice cream truck assumes that they aren't together. The teacher at the school doesn't initially think of them as related. Rothman takes pains to head off these painful misrecognitions at the pass. She writes:

. . . I learned to stand behind her with my hand clearly on her shoulder when we rang the violin teacher's door. "Hello, I'm Barbara and this is my daughter Victoria," I say before the teacher can so much as open her mouth. And put her foot in it. I call Victoria "my daughter" like a newlywed on a fifties sitcom said "my husband." Often. With a big smile. Straight at you.

The fact of Rothman and her daughter's relationship is not an obvious social fact: they have to work to cut across racial stereotyping to announce themselves as a family, to gain our recognition of their relationship.

For those of us who are parenting kids on or near the autism spectrum, we often have exactly the opposite problem: we may look completely "normal." So normal, in fact, that the only possible explanation for our kids' outbursts or behavioral episodes—or whatever we decide to call these meltdown events—is bad parenting and bratty behavior.

While Rothman and Victoria have to "perform family" to be accepted as family, those of us parenting on or near the spectrum have to announce ourselves as not normal, as not-NT, in order to make ourselves and our children make sense in the world. Kristina Chew writes movingly of affixing the autism awareness magnet to the side of her car. I've only recently started announcing M's neurological predisposition when faced with either social hiccups or social catastrophes.

Being "out about being aut," in Chew's memorable phrase, becomes one of the questions that faces autism parents. It is not only a practical question of what to say to judgemental strangers in the midst of a child's crises des nerfs or to what extent a particular diagnosis will limit, or enhance, a child's educational opportunities. It's also a political question of to what extent one wants to eliminate one's own, or one's child's, neurological distinctiveness–to what extent one wants one's child to be able to cover or pass as NT.

For some, the goal of early intervention is to render the autistic child indistinguishable from his or her peers. The "triumphs over autism" described by autism moms such as Catherine Maurice or Patricia Stacey have as their evidence of success the indistinguishability of their children from their neurotypical peers. Participation in a general education classroom becomes the sign of hard won "victories" over autism. For others, the goal of autism education is to create a context in which autistic individuals can thrive, and to render the wider world more accepting and nurturant of neurological diversity. These issues of visibility and invisibility influence how we picture or represent autism.

Add to these issues the stereotype about kids in the spectrum: that they can be, and often are, unusually attractive. They are said to have an otherworldly beauty, to be nearly elfish in their enchanting loveliness. Autism expert Uta Frith writes: "Those familiar with images of children who suffer with other serious developmental disorders know that these children look handicapped. In contrast, more often than not, the child with autism strikes the observer with a haunting and somehow otherworldly beauty."

In the first pages of Clara Claiborne Park's remarkable 1967 memoir of her family's life with her autistic daughter (Elly in the memoir, but Jessy in life) she describes Jessy's changeling beauty. Kristina Chew writes of the cuteness factor that helps cut Charlie slack. Similarly I noticed early on that that M's public episodes, however disconcerting to those around her, were met with more grace when she was otherwise adorable.

The first time I became aware of the autism-otherworldly beauty construct was when I was still hoping that we'd find be able to find a pro bono attorney or advocate to handle our case against the New York City Board of Education. When I spoke with a possible attorney on the phone she remarked, "I can almost picture your daughter . . . She's probably extraordinarily beautiful, isn't she?"

At the time, she happened to be at her most beautiful . . . Disarmingly beautiful . . . I couldn't deny it.

And, in fact, I think that her dazzling nursery school class picture may have contributed to some of the educational opportunities that she has enjoyed.

Autism has its own beauty, its own aesthetic, but picturing autism isn't easy.

Keywords: autism • Asperger's Syndrome • parenting • Rothman, Barbara Katz • Maurice, Catherine • Stacey, Patricia • Park, Clara Claiborne