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The Same But Different

with Susan Wagner

Susan Wagner is a freelance writer and editor, an avid runner and a mom of two boys. She's tentatively navigating the teen years with her oldest son, who has ADHD and an anxiety disorder (because puberty isn't hard enough already). [Insert blog name here] chronicles her efforts to balance science homework, basketball practice and panic attacks without completely losing her mind. Follow Susan on Twitter and Instagram (@workingcloset) and at her personal blog, The Working Closet

A Rose By Any Other Name

Categories: children, parenting, school, special needs kid

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I learned an interesting thing recently about middle school language conventions: Apparently, kids these days use “autistic” in the same way that my generation used “retarded” — to label the kids who are not fitting in, who are different, who are quirky.

Like my son.

Each piece of Henry’s diagnosis — each label — has helped us identify the things he struggles with. The dysgraphia explains his terrible handwriting, for instance, and the ADHD explains his inability to plan or get organized. The labels also matter because while Henry is clearly not like other kids, his issues cannot be clearly defined with, say, a blood test. Henry’s disability consists of a cluster of behaviors; taken together, they can be named in a way that enables people to help him succeed and thrive.

But then I hear about kids tossing around “autistic” as an insult and my heart aches. All of Henry’s various labels, taken together, add up to an umbrella diagnosis of Asperger’s Syndrome, which is a form of high-functioning autism. Kids with Asperger’s tend to have  limited interests; they tend to lack conventional social skills. They don’t fit in.

When Henry was in elementary school, I didn’t worry so much about how the other kids would respond to the labels — kids that age don’t care about fancy diagnostic labels. They tend to accept the weird kids for who they are, even when they recognize the differences (which they often don’t, really). What concerned me was that the adults Henry encountered every day — teachers and parents and coaches — wouldn’t be able to see past the label, that they would write him off because of his diagnosis.

Because of the label.

I was also afraid — if we’re being honest here — that those same adults would judge me, that they would blame me for Henry’s quirky behavior. I had talked with enough people who scoffed at the idea that ADHD was a real thing, saying instead that it was just an excuse for bad parenting, to know that not everyone was sympathetic to kids like Henry.

But when Henry was in first grade, he was struggling to find his place at school, and we decided to tell his teacher about the labels. She wasn’t surprised; she could see that he had trouble with transitions, that he tended to hyper-focus, that he was disorganized. Instead of dismissing him or judging me, she took the time to come up with strategies to make his day go more smoothly.

Henry’s teachers are always grateful when we share his diagnostic history with them. Sometimes they ask us for help dealing with his quirks; more often, they offer suggestions for ways we can all work together to support him. They are far more experienced with kids like Henry than my husband and I are. More importantly, though, they have accepted the labels for what they are — tools to help Henry succeed — and have not judged us for the way we parent.

We have also talked with Henry about his diagnosis, about how his brain works differently from his peers, and about how he will need accommodation for some things — written work, for example. We worried that knowing he was quirky (seriously quirky, in a diagnosable, nameable way) might undermine his confidence, but it has done the opposite: Being able to name what makes him different has made him more comfortable with who he is.

The labels have been a huge help to Henry academically; he does very well in school, with only slight accommodation, because his teachers understand him better once they read his file. But the labels are beginning to be an issue socially, because his peers judge him, in the same way I know parents judged me all those years ago.

Henry’s classmates are old enough now to understand the labels, but they are also at an age where every label comes with a value. To be a jock is good; to be a nerd is bad. To be different, in any way — particularly any distinct way — is terrible. And Henry is dramatically different.

Henry’s biggest struggles are social — he is essentially tone deaf, unable to replicate the kind of middle school banter he hears daily. He is frequently unable to distinguish between a joke and an insult, for example, which leads him to say the wrong things at the wrong times. He talks too much, and too loud. And he is a gamer in a class of jocks, which makes it even harder, because he has so little in common with the other kids.

His behavior makes him a target of the kind of mindless middle school jeering that we all remember from our own youth. Except that in Henry’s case, his peers are using an important label to mock him.

I wish his classmates had a better understanding of what it means to have an autism spectrum disorder, to have Aspergers, to be Henry — to be different, and to know that you’re different. I wish they could understand how it feels to be anxious all the time, to be inflexible, to be unable to engage.

I wish his peers could be more empathetic, or more sympathetic — or just a little kinder. I wish they understood that Henry’s labels aren’t a sign of weakness or failure; they are just who he is.

But most of all, I wish they weren’t tossing “autistic” around as an insult.

Have you talked with your kids about what it means to be different? Are they sympathetic to the quirky kids in their class? (Because yes, there is at least one quirky kid in your child’s class. I guarantee it.)

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