Saturday, September 12, 2009

almost normal

Parents of autistics, or any non-typically developing children, have to decide when and if to tell people about their children's situation. This is an easy decision when it comes to friends and family. You have ongoing relationships with these people, they need to know for a variety of reasons. The issue is strangers. Do you disclose the diagnosis to people before anything strange happens, so as to preempt any misunderstandings? Or do you wait until something occurs? Or even if something batty happens, do you simply remain mum as either a test of people's wherewithal or hope for tolerance?

This morning at the farmer's market, Martin went down two long tables touching and naming every vegetable. The vendor didn't seem to mind that Martin touched the products, so I didn't say anything. When he counts the items we take out of the grocery cart and puts them directly into the hands of the cashier, saying for every single item, "Here you go," I also remain silent. I only speak in dramatic situations where were getting crap from someone or in moments in which other parents seem awed by Martin's reading ability.

For instance, I tried to take Martin to a little violin concert that one of his classmates was in. Little did I know that every child in our town was also in this recital, either dancing, singing, or playing. The auditorium was packed and sweltering. I had taken Martin in the building with a stroller since we had walked to the concert. Somehow, we got trapped behind an entire class of ballerinas about to go on stage. Martin started to fidget. He began talking to himself, saying lines from a movie. I knew we needed to bolt. But we couldn't get around the ballerinas until they went on stage. Knowing that a public meltdown was imminent, I told the mom in charge of the girls in tutus that I simply had to get my kid and the stroller out of the tight and crowded hallway. She looked at me impatiently. "He's autistic," I told her. Immediately, her demeanor changed. She made a way for us, pushing little girls so we could get out. "He's autistic," she said, as she tapped people on the shoulder, clearing a path for us.

Once we got out of the building, I was relieved, but also glum. I've never had to deal with being too different in a way that I haven't chosen. I have no conspicuous birthmarks, no wheelchair. I look like a lot of other people in this country. But now I knew what it felt like, what it's like to live in a world that isn't quite designed for who you are. I guess that's why some parents "out" their autistic children immediately. They're just trying to let others know that their kid lives by different rules. But I keep banging my head against the reality of difference in our life. I'm not sure I've ever fully accepted it.


  1. I faced similar uncertainties in revealing Marc's diagnosis, and I feel for you. I wish there were easier answers.

  2. I wish this was easier on our kids. I had an experience (have them often these days) when both boys were melting down in the store (just happened a few hours ago). Both were over stimulated and my older son wasn't grasping a concept and he was so frustrated. A woman looked at me and said, "oh, they are tired of each other and don't want to be so close to one another." Normally I just smile and move on. I don't explain. I don't say anything. Strangers just don't phase me most times. But, today, I kind of snapped. I looked at her, I am sure very blase, and said, "yeah, that's it. You know my children sooo well" and walked off. Sigh, not one of my better moments. I guess not telling people, having children with "invisible" disablities (even though they are the most bright blinking neon sign to those of us who grasp Autism), and trying to keep it in check just gets to me some times. I have only broken down twice.

    I walk that line often. Do I tell or do I just let people live in their ignorance or lack of understanding of what's happening or about to happen? I have told people he has Autism before. The problem is our world is becoming a bit more tolerant of that DX. You would think this would be a good thing, but when your child is about to have a major explosion due to his sensory stuff just being out of whack, the last thing you want to do is stand there for 10 minutes answering honest and sincere questions about Autism and how it affects your child. This is why I stay quiet so often.