“My son has autism. What’s your excuse for acting like that?”

I recently read a post by Stuart Duncan on apologies vs. explanations which started me thinking about how I react to people in public when my child is present, and how many ways those interactions could possibly go.  So I asked my friends what they say to people out there in the world during those strange moments when all eyes seem to be on their kid with autism for one reason or another.  My specific questions were, “What do you say?  What do you wish you could say?” 

One mom replied, “I get angry, I can’t help it.  People are such idiots, until they are in our shoes, you can’t reach them.”  She went on to say, “I recently bought a t-shirt for my son that says ‘Go ahead and stare, it won’t cure my Autism’.”  Another mom politely said she just ignores people, but added with a grin that she wishes she could say “Mind your f-ing business!”  A friend and mentor of mine quietly chants to herself, “Bless them, change me, bless them, change me” to help her get calm and centered when confronted by difficult people.  But my favorite response came from the mother of one of my son’s classmates who said, “On a good day, I try to educate.  On a bad day I say ‘My child has autism. What’s your excuse for acting like a [insert insult of choice here]?’”

I have to say I have been there, done that and thought all of those plus a hundred other things at various times over the last seven years.  To tell the truth, I haven’t really found a completely comfortable response yet.  Although I’ve had many a day when flashes of decking some obnoxious, sneering old lady in the middle of the checkout line have crossed my mind (come on, haven’t we all??), I don’t want to spend my life in fight-or-flight mode, always defensive about the “natural” state of my first-born child.  No matter how disconcerting Alex’s behavior or quirkiness may be to someone else, he has a right to be just where he is and to try his best to get around in the world.  Likewise, I have a right to take him out, to show him the world, and to include him.  I get angry, too– especially in unaccepting, hostile environments– but I finally recognize the ways anger has drained my energy over the years and I know it’s almost always better if I can avoid it.

As for trying to educate, I think that’s great when it’s done well and it’s usually the goal on the tip top of my brain.  I’m a social worker and educator already, I love all that stuff.  I gladly use it when I am feeling confident, secure and up for the daily challenge of the “warrior (so called)” life.  I have been known to scribble out notes with my email, websites, names of books etc. etc. in the middle of the produce aisle or shoe store.  I’ve even been known to leave the store and return later that same day with a book for the cashier or a pamphlet for the waiting room.  But quite frankly, most of the time I’m like everyone else, I just want to get into the store for milk, eggs and bread, and get out in one piece with my sanity intact.  Taking the time to educate others is not something I always have the energy to do.  Besides which, if too much of my attention goes in that direction, my kids can be left feeling as if mommy’s quest to change the world means she loses focus on the people who should mean the most in the first place- them!  To add to that, my sensitive little autistic dude always knows exactly what I’m talking to other people about.  And why should his presence or what he’s struggling with at that particular moment become the center of a “teachable moment” for someone else?

alex and momSeveral years ago when Alex was in preschool, I had a dramatic realization.  It was during Alex’s second tour of duty in the 4’s class (he repeated that class just before going to kindergarten).  The prior year, Alex’s one-on-one aide had coached him through the annual “Morning with Mom” mother’s day celebration.  He had dutifully brought me pastries and presents, sang songs with the other kids, and managed to get through it all without too much of a fuss.  Although he loved me and wanted to please me, he hated every minute of that morning.  The next year, Alex’s one-on-one was busy with her own daughter at the same celebration, so we were on our own.  And Alex refused- simply put his foot down and refused- to participate.

I had spent three years watching other mothers enjoy all the “typical” things about this morning, secretly wishing and praying that one day I could be where they were.  I had all this love for my kid, and all these hopes for his future.  So much to share with him and tell him, so much creativity and excitement to pour into our activities together, determined to create the same happy memories I experienced at that age.  But Alex’s world was different.  All that I hoped for or wanted to give didn’t matter to him the same way it mattered to me.  For three years, although I put on a strong, diplomatic, proud façade, each preschool event tore me up inside. 

But on “Morning with Mom” that fourth year, everything changed.  With no extra assistance to guide Alex to participate with everyone else, we were on our own.  Alex didn’t want to leave the building, or to leave me.  He wanted to be with his mom on this special morning, but he needed me to know that the echoing auditorium and the smell of coffee and the unpredictability of the crowd of people were just too much for him.  So we sat together outside the door, and just watched.  For the first time in four years, I didn’t look back at the other moms who looked at me.  I finally didn’t care about what I was missing because I realized then that all along I had been missing where I was supposed to be. 

So where’s the happy balance between mama lion springing to her son’s defense or shrugging off the rest of the world, and wise owl gently swooping in to impart perspective-broadening words of wisdom to the crowd?  I once read about a mother who had business cards drawn up which stated, “My son has autism.  This means he has sensory & communication issues & may become overwhelmed in certain situations. For more information visit www.autism-society.org.”  I’ve often thought about creating something similar. 

autism on the seasAutism on the Seas (www.autismontheseas.com), a group which provides fabulous cruise vacation options for families with autism and developmental disabilities, gives out beautiful laminated cards which say, “I am, or I am traveling with, a person with autism. Please see the other side of this card for services that help to accommodate my disability.”  On the flip side, three simple bullet points address common dilemmas for folks with autism regarding waiting in lines, crowded spaces and communication.  Then there’s a brief explanation of autism and a web address for more information.

Right now I’m leaning toward a pre-printed easily-shared bit of information which I can politely hand to both the sneering and the cheering onlookers, while at the same time getting down on my knees on the floor of the store to ignore everyone else and be with my boy, breaking through the anxiety of his world, and gently defending his right to be included in mine.

What are your thoughts?