In The Politics of Autism, I write:
For those who remain at larger residential institutions, the horrors of yesteryear have generally ended. In 2012, however, a ten-year-old video surfaced, showing disturbing image of an electric shock device at the Judge Rotenberg Center in Canton Massachusetts. Staffers tied one student to a restraint board and shocked him 31 times over seven hours, ignoring his screamed pleas to stop. The Rotenberg Center is the only one in the nation that admits to using electric shocks on people with developmental disabilities, including autism. Center officials said that they had stopped using restraint boards but insisted that shocks were necessary in extreme cases to prevent officials insist the shock program is a last resort that prevents people with severe disorders from hurting themselves or others.Recently, a federal appeals court overturned an FDA ban on the use of electric shock devices to correct aggressive or self-harming behavior. The Center said it will continue using them.
Frequently, the press has framed parents who send their kids to a center like JRC as being loving advocates who know what’s best for their children. This is compounded by the fact that many autistic people subjected to shocks have intellectual disabilities, which means they are less likely to be taken seriously. As a result, the interests of parents are seen as synonymous with the needs of autistic and otherwise disabled people.
There is no doubt that parents can be good advocates for their kids. Throughout much of my travels while writing my book We’re Not Broken: Changing the Autism Conversation, I met parents who were relentless in their pursuit of adequate services and who wanted to ensure their children were living a happy life. My own mother was also an indefatigable advocate for me when autism was less understood than it is now.
But it is naive to assume that all parents know exactly what their disabled offspring want or need.
Oftentimes, parents can be pressured into accepting the necessity of “treatments” like shock therapy, as the FDA reported in 2016. But even if parents are fully aware of the conditions, they still don’t have to live with the consequences of having shocks regularly administered to them.
' Unfortunately, what non-autistic people want for autistic people pervades every facet of policy, from research to treatment to employment opportunities. It’s becoming increasingly clear that that is not acceptable — and not helpful. Rather, the focus should be on what autistic people say they need, even if how they communicate is not considered conventional or easily understood.