A Feminist Activist Raises a Son with Autism

Off Our Backs, 2006 by Silverman, Jen

I don't resent the restrictions raising Luc puts on my activism so much as I am just disappointed that for all of these reasons I feel like I can't include him in it. He is who he is. But being an activist is part of who I have always been.

While I would prefer to fly under the radar, having a kid with Autism and accessing services that keep me from losing my mind makes that impossible. We are firmly entrenched in "the system," in a world of bureaucracy and acronyms that sometimes make my head spin. I used to dream of homeschooling or, at the least, sending him to a democratically-run school. I tried the more gentle, hippie-ish sensory approach, but it didn't work. Instead, Luc goes to a school that uses applied behavior analysis, or what, in my opinion, amounts to Pavlovian training. But it helps him learn and, more importantly, makes him happy.

I've learned to let go of my expectations, and how to work the system, but it's taken years. Parenting a special needs kid can simultaneously be one of the most and least empowering experiences one can have. Over the last five years I've become a bad-ass mama bear, advocating for Luc against idiot doctors and demanding equal treatment. On the other hand, services are scarce and hard to come by. When I left Luc's father and tried to return to work to support us, I couldn't. His school only ran until 2 p.m., and there were no after-school programs for four-year olds with Autism. The after-school program he goes to now had a three-year waiting list when we originally signed up. The Centers for Disease Control estimates that one in 166 children in the United States are Autistic, yet there is an appalling lack of services for these kids and their families, and spotty educational resources that vary state-by-state.

Without access to childcare or afterschool care, we wound up living with my grandmother in one room of her apartment for a year, subsisting on food stamps. We were not alone. According to a report by The Institute for Women's Policy Research, the negative effect of having a child in the United States with a disability on mothers in the workforce is similar to having a child under one year of age or a preschool child.

The paper Care Work, Gender Inequality and the State: Women's Employment and Children with Disabilities, written by two professors in the sociology department at the University of California, Irvine, says, "thus, women appear to take on the lion's share of care work for children with disabilities. Further, they do so in a context of inadequate institutional, community and family support." (Lewis, Kagan and Heaton 2000; Marcenko and Meyers 1991) Therefore, one would expect to find that having a child with a disability affects labor force participation for women, and the limited evidence consistently supports that conclusion.

This problem is not limited to the United States. In England, a study by the advocacy group Contact a Family found that only 16% of mothers with disabled children work, compared to 61% of other mothers.