Susan Senator

In circles other than my autism world, I find myself at a different starting point with regard to Nat.  It seems I got a lot of ‘splainin’ to do.  These days everyone has a someone with autism, and so that particular experience informs theirs.  It is difficult to dislodge people’s perception of autism, and of course, that is one of the things I live for:  changing the world to make it a better place for people who have similar challenges to Nat.

Last night I had a teaching opportunity, and I blew it.  I was not prepared, even though I knew it was coming.  I was at a shiva, which is a post-funeral Jewish gathering similar to to the Catholic wake.  I had just met a man who was friendly and interesting and we got around to the subject of our kids.  “My guys are 21, 19, and 13,” I said.  Wait for it, wait for it —

“Oh, so the 21-year-old.  Done with college, off on his own…?”

D’oh, and it had been such a light and bouncy conversation until then.  “Well, no, he has pretty severe autism, so…”  Here’s one tip:  don’t be elliptical.  Don’t dot-dot-dot.  Offer your most impressive news first.  Here’s what I should have said, “Well, no, he’s been working for a while.  About to move into his own place.  He’s got pretty severe autism.”  This way, I keep myself — and Nat– on equal footing.  I don’t want no Goddamn sympathy.  Or if I do, I choose the moment when I get it.

No, I didn’t think on my feet.  They guy kind of blanched and said, “Oh, that can be SUCH a burden, to think about his future… I have a friend whose daughter…”

I let him talk.  It was a shiva, after all.  He was wearing a yarmulke, for God’s sake!  I’m kidding, because I feel bad.  I should not have let him refer to someone even remotely like Nat as a burden.  Only I get to say he’s a burden!  Or something like that.  Here’s autism parent tip #2:  Cement your loyalty to your kid.  You already love him.  You would not trade him for the world.  So go with that.  And then, think about what you are proud of, make a list right now.  I’ll help you start:

My autistic kid is:

1)   Really cute

2)   Funny

3)   Unusual, interesting

4)   Thought-provoking

5)   Loves life

6)   Gives my life a challenge

7)   Does not hide his feelings

Let’s all start being really brave.  Learn from my pathetic example.  And I don’t mean tell-people-off brave.  That’s easy, as tough as it is.  Being a bitch is the low-hanging fruit.  The greater challenge is to stay with them, assume they are well-meaning, and then rise above what they are saying and show them – don’t tell them, show them, gently but firmly – that they have it wrong.   I think that it is our duty – no, it is our privilege – to teach the world about our guys, to lessen the misery out there.  Yes, autism spectrum disorders – or, to use the language that the Neurodiversity crowd employs – behavior issues, social challenges, and the other  co-morbid symptoms that often accompany autism – are a challenge and even horrible at times.  But that is not the news.  Scoop everyone with your own positive story.