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|
Perhaps the Wrights, co-founders of Autism Speaks, have been tainted by negativism. In their desire to "not sugarcoat the impact of autism" (one of the eight guiding principles of the recent #AS2DC summit), maybe they've lost sight themselves of the gifts, the talents, the dignity of children and adults (who should not be lumped in with minors) with autism.
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:
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.