As a parent of two children with autism spectrum disorder, and as a professional who's spent the last six years working toward autism acceptance in schools, I found Suzanne Wright's blog posting, "Autism Speaks Point of View" for last week, incredibly offensive. Apparently, so did hundreds of others, whose comments at first were allowed on the website just below the posting. Those have since been removed and comments are no longer recorded (there).
Not surprisingly, it's creating a backlash. Throughout the week, individuals with autism, parents, and others who value the dignity of those with autism rejected Wright's depiction of families who have a loved one with autism as "not living" but "existing" in "despair" and "fear of the future". As I read to my daughter Wright's horrible characterization of raising children with autism, which was to be a rally cry for Autism Speaks' policymaking summit in Washington, D.C., she crinkled her face in confusion. I raised my voice in indignation. This is NOT autism. Not for us. Not for our family. Not for Good Friend.
|our family in 2012|
By virtue of our Awareness-Acceptance-Empathy mission, Denise and I have had the honor of meeting 100 children with ASD and their families (if only over the phone) since 2007. According to a few of them, THIS is autism:
- Ben loves NASCAR. He demonstrates his appreciation of his peers' interaction by drawing them pictures.
- David has an amazing memory. His classmates also know that he's likely to beat them in a game of HORSE at the basketball hoop.
- Paige is such a quick learner that she figured out how to write her own Social Stories.
- Reid is quite the movie buff. Ask him about producers, directors, and run times, especially about the Avengers movies, and he'll wow you!
- Avery's family watches "Wheel of Fortune" together.
- Nathan is learning to use words to communicate verbally. And even though he's in kindergarten, he's already reading at a 2nd grade level.
Yes, some of these parents and grandparents needed resources. We were glad to give them ideas. Yes, some of them were tired. We were glad to encourage them. Yes, some were frustrated. It was our pleasure to offer them hope. That is what it means to belong to a community; not to make others lament our existence, but to pull the little red wagon, as in Margaret Katter's poem, when someone needs a break.
Little Red Wagon, by Margaret Katter
Some days we skip along,
pulling our red wagons with great confidence –
so full of energy that the load seems light.
Some days the load seems heavy
and we need someone to help us
pull our wagons over the bumps in the road.
As you think about yesterday, and make plans for tomorrow,
keep in mind that there will be times when you can help
pull someone’s little red wagon for a while.
After all, helping to pull each other’s little red wagon
is what makes it possible
to face the challenges the day brings.