Written with Kathleen Leopold and originally posted at Autism Blogs Directory (and edited for a wider audience)
On March 14, I became aware of the CDC’s consideration of adding a wandering code to the ICD-9-CM in relation to autism and other developmental disabilities. ASAN, an organization created and headed by Ari Ne’eman, created a petition calling for people to speak out against the wandering code.
In the autism world, feel-good stories really don't come along all that long often, and heartwarming stories about severely impaired individuals all of a sudden speaking out in perfect English through the use of dedicated facilitators are uplifting stories. We want to believe that miracles happen, that geniuses exist inside nonverbal severely disabled people, just waiting for the chance to shine through the noble efforts of a selfless facilitator.
Some days I wonder if we were set up from the get-go to expect less, to hope for less, to dream of less. My son's prognosis was grim and bitter to the heart when he was a tender five. And yet here he is at 21 continually amazing us with the strides he makes.
The public perception of autism continues to be one of grim stereotypes. Certainly there is a sizable minority edging to the halfway mark of moderately to severely disabled autistic individuals; this appears to be what the general public pictures when they hear the word autism. Just as certain is that my three children aren't there; they aren't severely disabled, not now, but once upon a time, my son was much more severely impacted so that many standardized tests placed him in the first percentile.