The A-word

February 18, 2009 at 9:43 pm 4 comments

     I’ve always been an open book when it comes to C, and I generally share his diagnosis with just about anyone. C himself doesn’t know, although he’s seen the A-word on books I have sitting around the house, heard me say it to people, and probably actually does know it means something for him. Frankly, I’m surprised he hasn’t asked me what autism is, given his curiosity about every other word in the English language. Yet we haven’t started the discussion with him because we don’t feel he’s ready to hear how different he is when all he’s interested in at the moment is being the same as everyone else. 

     As C and his peers are all becoming more aware of all things, I now find myself closing up in order to protect him. A reporter is coming to see him at school in the morning to talk about a charity project C is working on, and I had to call the reporter back after our initial conversation to tell him to please not use the A-word in his article. Despite C’s autism being the subject of several newspaper articles a couple of years ago and C’s loving that his picture was on the front page, now his classmates can actually read and I’m quite sure they’ll read this article. The last thing I want them to do is have a name for him that is not his own.

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Entry filed under: autism. Tags: , , , , , .

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4 Comments Add your own

  • 1. FXSmom  |  February 19, 2009 at 8:24 am

    That is understandable. I don’t let people know that Rachel has fragile x too. She knows of course but like you said, her friends can read and understand. I don’t want her isolated for something beyond her control. Great post!!!

    Reply
  • 2. mama mara  |  February 19, 2009 at 8:54 am

    I told Rocky about his autism when he was about 12 because he was starting to label himself as a lazy, dumb jerk. Now he labels himself as a kid with autism who has to work extra hard to understand social cues, deal with sensory overload and overcome motor difficulties. He also takes great pride in his autie-skills, like his incredible memory and his ogical approach to the world. We are fortunate that there are so many kids on the spectrum around here that it doesn’t really have a stigma anymore.

    Taz knows what autism is, but he doesn’t really see himself on the spectrum like his brother. I’m letting him lead the way in deciding if and when he’ll benefit from having the A-label.

    And the way you dealt with it with Rocky is exactly the way I’d like to handle it with C. He’s not yet at the point where he’s giving himself those negative labels. I agree that it doesn’t have a stigma – I tell all the parents, for sure, but I worry that the kids will not handle it as well – at least at this age. And I have to say, C handled the reporter beautifully this morning!

    Reply
  • 3. goodmum  |  February 20, 2009 at 8:53 am

    I can totally understand that you want to protect C wherever and whenever you can. I do the same with Little Man, particularly because we don’t even have an official name yet for what causes him to behave the way he does. I just told Hubby last night that I was going to keep LM home and homeschool him until he’s uni age. I was kidding (kinda) of course, but it’s just so hard because I know that the world is a tough place for my boy.

    I think it’ s wonderful that you protect C as much as you can while not making him think there’s something “wrong” with him. Because there isn’t. He’s perfect the way he is.

    Reply
  • 4. Holly's Mom  |  February 20, 2009 at 1:47 pm

    This was a great post I flip flop and wonder if I should tell parents of the kids Holly plays with, as I hate to label her. Usua;;y when it is a casual playdate I don;t but once I get to know the family they inevitably hear me talking about therapies and it comes up. But I worry that it will make them treat her differently.

    Reply

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