What I Wish Someone Had Told Me About Autism

A couple of weeks ago I connected with a social media personality who goes by the name of Autism With a Side of Fries.  She blogs regularly and posts smart, pithy comments about parenthood and autism, and occasionally, French fries.

Every now and again she posts thought-provoking questions for her readers to consider. I never answer them, partly because my thoughts don’t like to be provoked—they like to stay safely tucked away in my little head mulling over high-level ideas like which flavor of cake is better: vanilla or marble swirl.

But I also don’t answer because it’s really hard for me to answer a big important question in that teeny comment box Facebook provides.

On Saturday morning I was sitting in my car outside of the middle school. I had just finished Bikram yoga and was waiting for my ten-year old, Joey, to emerge from basketball practice. Sweaty and relaxed, I took out my phone and saw this on Facebook:`

“So imagine this. A parent sits down next to you and says they just found that their kid has autism. What would you tell this New to Club Spectrum member?”

Huh, I thought to myself.  What would I say?

Because of the book, I do have the opportunity to talk to a lot of parents with newly-diagnosed kiddos. My first instinct is to console, to soothe. Oh, I am so sorry to hear that!

But then it occurred to me how insulting that reaction is to the blue-eyed boy standing right next to me. It’s like saying, “Listen, I know I pretend to really like you and I tell you autism is all sorts of cool, but it isn’t. And when I hear someone else has it I feel bad for them.”

So I stopped doing that.

My second instinct is to start blabbing my fool head off about a bunch of random, disconnected ideas:

“Are you doing sign language how about ABA a lot of my friends love ABA maybe you should try ABA I hear good things about hyperbaric chambers the gluten-free diet is supposed to help look up ABA!”

Meanwhile, I don’t really know what ABA is, we don’t own a hyperbaric chamber, and every Saturday Jack eats gluten-full pancakes like it’s his job.

So, I stopped doing that too.

Winding through the back streets towards our house while Joey flipped through the radio stations, I thought about Autism With a Side of Fries’ question. But instead of concentrating on a good answer, my mind kept darting back to a late-summer memory.

It was about a week before school started, and I had taken Joey and Charlie shopping for new sneakers On the way home, we’d stopped at TGI Fridays for lunch.

From the moment we sat down, we could hear a little boy shrieking and banging and crying from two tables away. His voice was shrill. Over and over his mother carried him out to the bench in the vestibule with a weary expression on her face. She was wearing a pink t-shirt. Through the glass doors I watched him relax into her shoulder, only to stiffen and screech again once they returned to the table.

After a few minutes their food came. When the server set his dish down in front of him, both mother and father sprang into action: frantically blowing on the French fries, cutting up the chicken, squirting ketchup.

I know tantrums. I mean, every kid throws a tantrum at one point or another, and with five kids, I figure Joe and I have lived through at least 9,434 of them. Restaurants especially are breeding grounds for fits and outbursts; the waiting, the sitting, the wrong color crayon with the paper menu.

But there is a difference between where are my chicken fingers and the world hurts it’s too bright and too loud and too salty and too itchy and too much too much too much.

Because if Joe and I have lived through 9,434, probably 8,922 of them have been thrown by Jack. (I’m estimating here, obviously.) And oh, I don’t know, maybe 3,156 of them were—and continue to be—in restaurants.

Listening to the little boy shriek reminded me that before there was karate camp, there were failed attempts at soccer and swimming and story time at the library. Before there was kale, there were upturned dinner plates and chicken on the floor and lots and lots of screaming. Before there was sleep there were long, wakeful nights—nights when I could neither soothe the cranky infant nor silence the nagging pit in my stomach.

Sitting with Joey and Charlie in the darkened TGI Fridays, I thought about all the things I wished someone had told me about autism, back when two-year old Jack was diagnosed.

I wish someone had told me that yes, he would start to talk, he would begin with one-syllable words that transformed into halting sentences. And yes, we would teach him not to bolt out the door like an inmate escaping prison every time someone opened it and eventually he would sleep through the night.

But how the old problems are simply replaced with new ones: instead of he doesn’t play with other kids, we have why won’t he stop asking all the girls in his class how many radios they have. Yes, Jack eats kale, but now he thinks we should eat kale with every single meal.

I wish someone had warned me that when Jack was in second grade, he would lock himself in the bathroom off the kitchen at 4:00 every single day and sit and scream in gastrointestinal agony. How I would go in to try to help, only to discover that in his distress, he had smeared the walls and floor and sink with excrement.

How every day at 4:00 I wanted to open the front door, step outside, walk down our long driveway, and never come back.

But I didn’t. Because over the course of many 4:00 sessions, I came to terms with a lone truth: only I can do this. Only I can be this boy’s mother and ease the stomach cramps and wipe up the mess without shaming him.

And every day since I feel the tiniest bit more confident that I can do it. I am doing it.

And in those moments when I am sure I cannot—when I can’t talk about license plates for one more second and Joe and I are barely speaking and I’ve been up since 4:30 am after waking three times during the night, I pour myself a big cup of coffee and add a ton of vanilla cream and sit at my computer. Then I click onto some of my favorites sites: Autism With a Side of Fries and Five Kids Is a Lot of Kids and Miss Indeedy and a whole bunch of other people.

Without even knowing it, they pick me  up and dust me off, and I can laugh to myself about things that didn’t seem the least bit funny at first; poop on the walls and the tantrum in Ruby Tuesdays and anxiety about blue water in the toilet bowl.

I wish someone had told me how over the years, Jack’s special needs label would come to mean nothing more than that he is special. And he needs me.

Some days I feel as though I’m doing little more than putting fires out all around me, brightly lit flames of self-stimulation and weird obsessions and rigidity that threaten to burn the house down. Just when I think I am running out of water, the flames cast a soft glow on a sandy-haired boy, and I see exactly how hard he is trying to stay in my world when he would so much rather be in his. And I put away my watering can.

It would have been nice to hear someone say that one day I would adore every single thing about my Jack-a-boo; his fleeting smile, his one-armed hugs, his robotic voice. His autism.

I wanted to say all of this to the mom in TGI Fridays last summer. I wanted to tell her I know how she feels and it will get better and tantrums are the worst. I wanted to tell her I am rooting for her. I put my napkin down, told Joey and Charlie to stay in their seats and keep eating, and walked over to their table. The little boy was calmer, his small face streaked with tears and ketchup.

But I didn’t say any of it. I didn’t bring up ABA or pretzels without gluten or eye contact or spectrum disorder. I simply stood awkwardly at the end of their table and asked, “How are you?” while three sets of eyes looked up in surprise.

As I pulled into my driveway on Saturday remembering our summer lunch, I decided that’s how I would answer Autism With A Side of Fries’ thought-provoking question.  In fact, it’s what I will say from now on to any mother or father or grandmother or sister or uncle who tells me someone they love has been diagnosed with Autism Spectrum Disorder.

How are you?

It even fits in that teeny Facebook comment box.