Monthly Archive for June, 2006

Cammie McGovern, mother of an 10-year old with autism, wrote about parents’ actual or alleged contributions to the deaths of three individuals with autism as a springboard to make an important point about parents’ expectations for their children. Writing in the New York Times (NY, US), she argues that families need to be told that total recovery and normalcy are not appropriate expectations for children with autism.

Clearly there is a message in the recent deaths about the urgent need to increase support for the rising number of families struggling with autism. Having an autistic child is estimated to cost a family $10,000 to $50,000 a year in out-of-pocket expenses for medical treatment, therapy and education. With 50 new diagnoses of autism in this country every day, support services are already too stretched to meet the need.

But as much as I’d like to fault government policy, I suspect it is not entirely to blame. There’s another issue that hits closer to home and is harder for most parents of autistic children to be candid about. When your child is initially diagnosed, you read the early bibles of hope: “Let Me Hear Your Voice,” “Son-Rise” and other chronicles of total recovery from autism. Hope comes from a variety of treatments, but the message is the same: If you commit all your time, your money, your family’s life, recovery is possible. And who wouldn’t do almost anything ? mortgage a home, abandon a career or move to be closer to doctors or schools ? to enable an autistic child to lead a normal life?

Now, as the mother of a 10-year-old, I will say what no parents who have just discovered their child is autistic want to hear, but should, at least from one person: I’ve never met a recovered child outside the pages of those old books. Not that it doesn’t happen; I’m sure it does. But it’s extraordinarily rare and it doesn’t happen the way we once were led to believe.

Ms. McGovern’s column raises very important ideas. If not all, most of the students with whom we work will never completely shake the problems they have. Too often, we educators have unrealisitic expectations for our students. We can help them to lead more normal lives, but we are not going to cure anyone of all those problems. As adults, these individuals are still going to have mannerisms, quirks, gaps, and other irregularities in their behavioral and skill repretoirs.

It’s fine to have high expectations, but not unrealistic expectations. Too-high expectations have deleterious consequences. For example, too-high expectations can lead us to hope for miraculous improvements, increasing our willingness to adopt untested methods our our vulnerability to scam artists. We need a good dose of realistic thinking. Thanks, Ms. McGovern.

Link to Ms. McGovern’s editorial.