Wednesday, 06 April 2011
I recently got a question from a Twitter Follower: “Is there a specific reason you prefer ‘my autistic 12-year-old’ versus ‘my 12-year-old with autism’?”
Yes. "Thank you for the note," I replied. "I've long considered your point interesting, especially since I've heard that the adjective isn't viewed as positively as the phrase 'with autism'."
A pretentious beginning, but the right tone.
“Part of the reason is the space limitations of Twitter and Tweets. I also found when I started on Twitter that ‘autistic’ tended to be a better searchable word than ‘autism’ if one was looking to be found. But the major reason, I think, is that I feel autism is in front of my son, blocking the boy behind it. ‘Autistic’ has a harsher sound, I think, than ‘with autism,’ and sometimes in the frequent struggle that is parenting Alex, I feel harsher sums up the situation more clearly.”
The guy wrote back that I owed him no explanation, and “as the parent of two children with special needs and as someone involved in the special needs community, I find myself ‘correcting’ the media when they use certain terms improperly. I absolutely respect your wording and the meaning behind the statement. I have always found this a great resources to pass along: http://ncdj.org/styleguide/ . By the way, I am working on launching the largest online resource and community for parents and caregivers of children with special needs. Let's stay in touch and I wish your family all the best.” That was pretty classy – and if he’s got two kids with special needs, he owes me no explanation!
I understand “people-first” language and the theory behind it. It’s the person, not the affliction or condition, you’re dealing with, conversing with, talking to, trying hard to understand and fit into your vision of the world. And that when you’re talking to someone who isn’t your kid, someone in whom you don’t invest one of the most terrifying of human loves, then maybe “people-first” is the language of progress. I hope that everyone speaks to Alex in “people-first” language in the time of his life after I’m dead.
I wish I had room in the father-son connection for the language of progress. I stick by “autistic” because it is the language of clarity and honesty (and, as a friend once said to me when Alex was still an infant imprisoned in a hospital, “You’re the father – you’re allowed to be a son of a bitch”). Autism stands between us when Alex rock-walks down the sidewalk, darts into doorways, punches four elevator buttons on what should be a straight shot between the first and ninth floors.
It’s not Alex I address when I talk to him, but autism. I’ve never met Alex. I’ve met his autism, which has always barged ahead, elbowing aside all others and insisting on shaking hands first, like a real self-centered son of a bitch.