This morning I went to see The Lego Movie, and really enjoyed it. Even better, a group of special needs kids were in the audience as well, and afterward I heard an echolalia coming my way, and it came from a toe walking boy who is probably around 13. He presents as a kiddo who likely is diagnosed as “severely autistic” or “severely involved,” with a “pervasive developmental disorder” when he was younger and “mentally retarded” now. I am emotionally drawn to these boys because my son, Kris, had the “severely autistic” or “severely involved,” and “pervasive developmentally delayed” diagnoses before he died in November, 1993. Were he alive he would be heading toward his 26th birthday. I struggle to imagine Kris in his mid-20s, but in boys up to their early teens I can still see my beautiful boy, and the kiddo I saw this morning reminded me of Kris more strongly than any kiddo I have seen in some years.
As the kiddo streamed by me on the staircase out of the movie theater a caregiver in her late-teens was restraining him via his backpack, and at first I thought I was going to find it all depressing. Why?
AutisticChick provides a powerful Rashomon narrative that explains how well-meaning neurotypical caregivers can badly, and even abusively, misunderstand the behavior of autistic kiddos (and adults) in their care.
I turned toward the door to the gym, and I saw a classmate burst through the door, an aide inches behind him. The aide grabbed a strap on his vest and stopped him cold. The student struggled. Aides thronged at the little windows.I know what they saw.
They didn’t see someone asking to be taken for a walk. They didn’t see him begging to have some space.They saw an escape attempt. A noncompliant escape attempt. A student trying to outsmart the teachers, to get his way.They saw someone who didn’t understand the point of P.E. They saw a runner.He pulled away, and the aide pushed him back through the gym door, shouting “In we go! In we go! In we go,” his hands pulling and pushing as the student dug his heels in. Everyone else “encouraged” from the sidelines. They saw defiance. Headbanging behavior. A tantrum.I saw a student trying to block out external input. I saw. Everyone else gawked and chattered as the other kids did the warm-ups. I stood by helplessly. I saw a humiliated man sitting against a wall in a corner, helpless and outnumbered, with no way to communicate.
But unlike the aides that AutisticChick saw, this boy’s caregiver was gentle about her restraint, and they stopped, gathering with 10 or so other special needs students and 8 or so assorted caregivers. I wandered about to get an eyeball on him. He was happy as could be, bouncing sound from his mouth off of the walls, cradling an iPad, and just smiling at the world.
A minute later another caregiver walked up to him and spoke with him with a respectful demeanor and tone. Like my son Kris, I doubt this boy can express himself verbally, but they seemed to be able to communicate, and they were both smiling after the interchange. It really made me feel good.
When Kris was alive the entire medical, educational, psychological, and social work communities failed to see what AutisticChick sees. My ex-wife (and Kris’ mom), Kathy Berger, and I learned to see what AutisticChick sees when we attended Adams’ Camp with Kris in the summer before his death. In 1995 Kathy founded Kris’ Camp and began spreading the news to small groups of families. She has worked with the incredible staff at the Neurologic Music Therapy Associates of AZ (NMTSA) and ACT School for close to two decades, and all across the US, and throughout the world, people are learning how wrong the medical, educational, psychological, and social work communities have been about non-verbal autistic folks.
But from the vantage of 1990-1993 it really is so much better. The pace of such change is glacial, and that can be so frustrating. But if we back up and look at a larger chunk of time we can often see it. More understanding among caregivers (who are most likely poorly paid), the existence of iPads (which help non-verbal folks demonstrate their intelligence, and even communicate), people like the NMTSA Staff, and researchers like Kathy Berger, Eric Courchesne, Stewart Mostofsky, Elizabeth Torres, and many, many others are making a difference. And then there are the activists in the autism community whose publishing, blogging, and other activity have had the greatest impact. Much like the drip, drip, drip of water carves a river from a canyon, small groups of people constantly pushing, some technological innovation, some research… it adds up.
It was a good day.