10: The Eccentric Side of Normal

10: The Eccentric Side of Normal

From Chicken Soup for the Soul: Raising Kids on the Spectrum

The Eccentric Side of Normal

What fun is there in being normal?

~Cristina Marrero

Normal, I’ve learned, is in the eye of the beholder. Shortly after my cousin Beth’s son Ethan was diagnosed with pervasive developmental disorder (a catchall diagnosis for high-functioning autism that’s not Asperger syndrome and doesn’t fit other diagnostic boxes), I came to the United States on a business trip and paid her a visit. I knew of Ethan’s diagnosis, but my knowledge of autism back then consisted of Dustin Hoffman’s performance in the movie Rain Man.

When I met Ethan, he was an exceptionally bright, talkative child. Okay, maybe the things he said were a bit repetitive, and he flapped his hands around a bit, but hey, at age four, the kid could already read.

We went out to a local kid-friendly restaurant for dinner, and later, after Ethan was in bed, I told Beth that although I knew her son had been diagnosed with autism, he seemed pretty normal to me. I asked her how the autism manifested itself, what symptoms should have clued me in.

“Did you notice how he freaked out when we took a different route than we normally do to get to the restaurant?” Beth asked.

“Well, yeah,” I said. “But that’s normal. Joshua does that.”

Back home in England, if I took a different route than usual when driving Joshua to nursery school, he’d have a conniption in the back of the car. “NO! Mummy! Not that Way! The other Way!” This would be accompanied by kicking the back of my seat, waving arms and various ear-splitting sound effects.

Joshua was my first child. He freaked out. So to me, it was normal for kids to freak out if you went a different way than usual. Although I had worries about Joshua’s socialization at Parent and Toddler Group and his extreme reaction to balloons bursting and other loud noises, it didn’t cross my mind for a nanosecond that perhaps Joshua does it, so it’s normal wasn’t the correct conclusion.

Oh, the irony! About six months later, in response to the concerns we expressed at a parent-teacher conference, our son’s Pre-K teacher handed us a leaflet about a condition I’d never heard of: Asperger syndrome, an autistic spectrum disorder. Reading it was a revelation; it was as if someone put a framework on those niggling worries that everyone had been poo-poohing as the neuroses of an overanxious first-time mother.

I went straight to our general practitioner, and listing Joshua’s traits, asked that she refer him to the Autism Assessment Unit. She agreed, reluctantly, but then commented, “You know, Sarah, he might not have Asperger’s, he might just be on the eccentric side of normal.”

At the time, I was incensed by my GP’s comment, because it felt like another of a long line of fob offs to my very real concerns. But in retrospect, and I suspect without meaning to, she hit the nail right on the head. For what better description of Asperger’s than “the eccentric side of normal”? Long before 1944, when the Austrian pediatrician Hans Asperger published his paper on “autistic psychopathy,” describing the condition that would become known as Asperger syndrome, many families had their eccentric relatives. Mine certainly did.

Back in 2006, Josh, who was twelve at the time, interviewed me at the StoryCorps booth in Manhattan. A short three-minute clip from our interview aired on NPR’s Morning Edition and had a huge response, and it was subsequently made into an award-winning short by Rauch Brothers Animation, which has had over 891,000 hits on YouTube. Josh asked me this question: “Did I turn out to be the son you wanted when I was born? Like did I meet your expectations?”

Even now it makes me tear up, because it goes straight to the heart of what every child wants to know, but most would never come straight out and ask: Do you, Mom, Dad, love me the way I am, not the way you expected or hoped I would be when I was born, but the way I actually turned out?

In Joshua’s case, though, it was even more meaningful, because as elementary school progressed he became more aware of his differences and at the time of the interview he was experiencing isolation and bullying in middle school. He was aware that certain things — particularly the social aspects of life — didn’t come as easily for him as they did for his sister, and the question revealed his anxiety that I might not love him as much because of it.

Nothing could be further from the truth. I told him that he had exceeded my expectations and that because he thought differently than I did and from what I read in parenting books, I really had to learn to think outside of the box with him. That had forced me to become more creative as a parent and as a person, and I will always thank him and be grateful for that.

Having Josh as my son has also taught me to trust my instincts. Even before his diagnosis, I noticed he had problems with transitions — particularly if he was playing his favorite computer game, Richard Scarry’s Busytown, and I told him it was time to go upstairs for his bath. He would have a complete meltdown.

Without advice from doctors or therapists, just mother’s instinct and common sense, I had the idea to give him a five-minute warning by setting a kitchen timer. He knew that when the bell rang, it was time to go upstairs without fuss. It worked. As long as he had the warning and the auditory cue, the transition was tantrum-free. I also created visual calendars using laminated poster board and Velcro, with pictures of people and activities. We had “This Week” and “Next Week,” so if he was perseverating about when an activity was going to happen, I could show him in visual form.

When Josh was finally diagnosed, these tricks I’d figured out by instinct were amongst the strategies recommended by therapists.

So my advice to parents is to learn everything you can possibly glean from experts, but to trust in yourself. No one else is paying the same level of attention, and no one loves your child the way you do.

With the increasing and incredibly misguided emphasis on standardized testing, we need to rethink our definition of “normal,” and broaden our acceptance of those who don’t quite fit the mold. Looking at history, it’s people like Josh, the ones who think outside of the box, who have made the world a more interesting and infinitely richer place.

In the words of philosopher John Stuart Mill: “Eccentricity has always abounded when and where strength of character has abounded; and the amount of eccentricity in a society has generally been proportional to the amount of genius, mental vigor and moral courage it contained. That so few dare to be eccentric marks the chief danger of the time.”

~Sarah Darer Littman

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