A Feminist Activist Raises a Son with Autism

Off Our Backs, 2006 by Silverman, Jen

A boy." A pause, followed by a long silence. "What are we going to do with a boy?" Such was my mother's response on learning the gender of her first grandchild. I understood where she was coming from: I come from a long line of strong, independent and fierce women. But after my initial wariness at raising a boy, I became excited about it.

I had thought that my attempts to radicalize a girl-child might have the same results my mother had gotten from giving me dolls and painting my rooms pink. But instead of bald, beheaded Barbies and a life-long preference for the color black, I worried I'd wind up with a daughter who read "The Rules" and worshipped Phyllis Schafly. I was looking forward to raising a boy who would grow up to be a feminist man, who respected women and didn't buy into society's preconceived notions of gender roles. I envisioned going to rallies with my long-haired boy-child, having fun making signs and banners together beforehand, and having him carry on his family's history of political action.

As it turned out, my long-haired seven-year-old son loves rallies and marches. The carnival aspect and vibe make him happy, especially when there's some percussion action. But as for whether or not he understands anything that's going on around him is anyone's guess. Luc is profoundly Autistic and has spoken maybe once in the last year (either "mama" or "no"). Autism is still a mystery, but is most often described as a complex neurological disorder that impairs cognitive function, the ability to communicate and social skills.

Being a boy-child made him four times as likely to be Autistic as a girl, for reasons that are so far unknown. Although he's made a lot of progress in the last few years, raising him is like having a four-and-a-half-foot non-verbal jumping bean, who acts like a toddler most of the time, sleeps well about three-quarters of the time, and has a particularly difficult mix of obsessive-compulsive and stubborn behavior.

For many years, Autism was blamed on mothers: "the refrigerator mother," who just didn't give enough love to her child, thanks to Freud and (male) Drs. Kanner and Bettelheim. This wonderful theory held until around the 70's, having been discredited in 1964 by Dr. Bernard Rimland.

Luc's Autism adds to the already difficult combination of being an activist and a mother. If we go to large events, I have to either push him in a special needs stroller or be hyper-hyper vigilant. Should Luc run off or get lost, chances are he'll wind up seriously injured or worse, since he has no sense of danger or the ability to tell someone who he is. And since he has extremely poor impulse control, the odds are he will run off. I tried getting him an identification bracelet but he pulled it off within a few weeks and broke it. His sensory issues, which are part of the Autism package, make jewelry or even hats next to impossible for him to wear.

We have tried using childcare at events, which is offered too rarely to begin with, to find out that few are equipped to deal with special needs kids. At one conference, I found Luc wandering in the hallway by himself, although he had been assigned a one-on-one babysitter in their childcare area. It was purely by accident that I was in the hall at that moment, and I don't let myself think about what would have happened had he gotten out of the building.

As I found out at the giant New York City anti-war march on February 15th, 2004, the police aren't nicer to you when you are lugging around a kid in what looks like a wheelchair. We got caught in a mess behind riot police that seriously compromised his (and everyone else's) safety during what was a peaceful, legally-permitted event. Imagine being fenced in on both sides and the back by metal gating, elbow-to-elbow with a crowd that can fall like dominoes and faced off in the front by a line of cops dressed in riot gear with clubs on horseback.

When I asked a cop if I could cross the street to safety, he said no and told us the only way to get across was between the riot cop line and the swaying throng behind them. We managed to escape, with our fellow mama/kid friends, to a bagel shop to wait out the madness. Since then we've stayed away from events with police pens.

I'm not only frightened that Luc might wander off, I'm also frightened by the possibility of his being taken away from me. Any time you bring your kid to an event/demonstration in New York City where you risk arrest, which in this political climate is any event, you risk your child's custody as well. If you are arrested, your child will be seized by the Administration for Children's Services, and a case opened up against you. For mamas like myself who identify as anti-authoritarian, this is pretty much a worst-case scenario and one that keeps me away from actions I would love to bring Luc to. My child's safety is always first, and he won't understand the whole "quick escape/hasty retreat" plan. So a lot of the time I stay away and feel forced to keep that activist part of my life separate from my family.