Wednesday, June 4, 2008

How to deal with pity

I've been trying to figure out what to say to people when they express pity on learning that I have an autistic child. Being stumped with that question I tried to figure out what I would like them to say and I drew a blank there as well. Autism is complicated and reactions to it are complicated as well.

It took me a long time to accept the diagnosis. There are so many stereotypes I held about autism that didn't match. After a while I realized that it was my understanding of autism that was wrong, not the diagnosis. Then it took a while to feel OK with telling people about the diagnosis. I don't feel like explaining to everybody who stares. It might make people quit judging us, but I'm not comfortable with starting up conversations with strangers. I especially don't want to start up conversations with people who are looking disapprovingly at things they don't understand.

On the other hand when I'm talking to acquaintances and it comes up I don't hide the fact. When the discussion turns to where we're going to school or why we don't go out as much as some people do, it seems like the right time to bring up autism.

Then come the reactions, most of which bug me.
  • "That must be tough for you." Generally having kids seems pretty tough to me. Maybe this is more challenging, but the rewards seem higher as well. The only response I can think of without sharing more than I feel is appropriate is "I guess, I don't usually think of it that way."
  • "Oh no, he/she's not autistic." Doubting the diagnosis bugs me too. Look, I spend a lot more time with it than you do. If I've come to terms with autism don't second guess me. My response - "No, it's a good diagnosis. Autism is just a spectrum."
  • "Those damn vaccines are the cause of autism." Just because I've got an autistic kid don't assume I agree with your conspiracy theories. Besides, my goal is to focus on my kid, not doing research to solve a puzzle that won't help us anyway. My response is "Yeah...maybe, I don't know."
  • "I've got a (friend, 2nd cousin, neighbor...) who's autistic. I know exactly what you're going through." Probably not. If it's not your kid you don't really know. Plus it's a spectrum - different autistics have different traits. My reaction - "Ummm..."

All these reactions that bug me - seems like maybe I've got a problem. But there are reactions that I don't find objectionable. Questions about what autism is like for us are good. Discussions about school selection or inclusion can break the tension. Even silence and moving on to another topic is better than saying something annoying. I'm sure as time goes on I'll do better, but it's a journey.

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