Perception is not reality

If you grew up in the 80s, as I did, your perception of autism was probably shaped by Dustin Hoffman's performance in Rain Man. The movie raised autism's profile, but also led a lot of people to associate it with savant skills. I was one of them. Despite holding a master's degree in social work and owning two copies of the DSM-IV, the first time I heard 'autism' connected with my daughter, I thought of Raymond Babbitt and wondered what on earth that label had to do with her.

My other exposure to autism came via my mother, who was a fan of the TV series St. Elsewhere. Tommy Westphall, the autistic son of Dr. Donald Westphall, didn't seem much like Leah either. Tommy was nonverbal and required considerable support. At diagnosis, Leah could name just about anything and order me around with two- and three-word phrases.

In other words, my perceptions of autism were shaped entirely by portrayals in popular culture, even as late as 2003, the year Leah was diagnosed.

Autism gets a lot more attention today, in news coverage as well as fictional portrayals. And now I am viewing all of it as a parent with almost 15 years on this journey. I have seen autism celebrated, denounced, fictionalized, trivialized, and misunderstood. Occasionally, something resonates. More often, I'm frustrated by inaccuracy, lack of depth, or troubling attitudes.

Autism in the real world doesn't fit in neat boxes. It demands a lot, of the people diagnosed with it and of the families charged with caring for them. The approach of my daughter's 18th birthday is forcing me to think hard about whether public perceptions of autism match her reality. She is a few quick years away from leaving the shelter of school for an adult world that is ill-equipped to meet her.

I can do my part to help the world understand the hundreds of ways reality doesn't match perception. After all, if you haven't met someone with autism yet, you will.