Susan's Blog

Thursday, March 31, 2011

How to brag about your autistic kid

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.


You know, I think I will take this advice when talking about my neurotypical kids. And what about spouses. In general, it sounds like a great idea to lead with the good stuff!

— added by Jonathan Richardson on Thursday, March 31, 2011 at 5:29 pm

Stop telling me things I need to hear. Right now!

You hear me 😉

— added by Ed P. on Thursday, March 31, 2011 at 6:07 pm

Co-morbid is not a nice word. Sounds deadly.

Wow…that’s tough. I often hide it, refuse to bring it up. But that doesn’t “raise anyone’s conciousness” regarding Autism. It’s not a train wreck, worse than cancer…

I guess most people really wonder why I homeschool. The best I can think of right now is that Ben marches to the sound of a different drummer, but he is very bright, just not school-wise. That I wouldn’t change a hair on his head, and I’m lucky to be his mom. He is very funny and never boring.

— added by Rose on Thursday, March 31, 2011 at 7:03 pm

Me too:-). LOVE, LOVE, LOVE this one!! So what I needed to hear this evening!!

Thank you Susan. You are awesome!!


— added by molly fliearman on Thursday, March 31, 2011 at 9:54 pm

Hmmm….. 🙂 Makes me think of something I posted on my blog today, about my fear of positive progress sharing. Thanks for this post… I hope this doesn’t sound to awfully-horrible, but everything you write always seems so perfectly perfect, and wonderful, and respectable, and great, and just what I wish I would think more like.
NOT that I haven’t done what you did… but it struck me that even the pro’s sometimes get caught wishing they’d done something different. Thank you for explaining it so well, and then sharing how wonderful your Nat is. I need to do more of the same dang thing, the positive appreciation. I’m also glad to think about what I’d say in advance. I hate being caught unaware, amd missing those precious opportunities to blast someone’s preconceptions away with a single sentence and a smile. 🙂 Hugs, Cheer, and thank you for your wisdom!

— added by Daleth on Friday, April 1, 2011 at 1:08 am

I love this, love reading your blog!

— added by Kim on Friday, April 1, 2011 at 9:25 am

At least the person you were talking with didn’t say “Oh, I just don’t know how you deal with it. How do you do it? Nat is SO lucky to have you for his mommy. Working so hard to get him those services he gets. If it were me, I just couldn’t deal with having a child with autism. You are just so brave.” I HATE that one, and I’ve heard it 1,000 times. Is that supposed to be a compliment? I’m getting pissed off at just having to type the words.

— added by Sharon Jones on Friday, April 1, 2011 at 12:04 pm

This post was fantastic. It was exactly the type of entry I needed to read.

— added by Donna on Friday, April 1, 2011 at 1:37 pm

Great advice!

— added by Suzette on Saturday, April 2, 2011 at 4:05 pm

Thanks for the tip. I will try to use that strategy in the future.

— added by Julia on Sunday, April 3, 2011 at 11:23 pm

I think some of the things people say is out of their own discomfort. Many times they are caught unaware and are nervous and wondering what’s the right thing to say. Out of my 4 grown children, 2 have disabilities. My oldest, Rebecca,now 33, is severely disabled and in a group home. My youngest, Marisa, is turning 21 this June. She has autism but is high functioning. I find that in conversation, it has always been a good idea to get the facts out early. That way, the other person doesn’t feel foolish for asking about what wonderful accomplishments your “graduate” has accomplished, and it also makes it easier for me not to have to start explaining.

— added by Sherry Rubin on Tuesday, April 5, 2011 at 9:14 am

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