“It’s a Small World, Asper-All”
A Global Glimpse at Your FAQ’s (Installment #1)
Following a whirlwind tour of the United Kingdom, author Jennifer Cook O’Toole (Asperkids, The Asperkid’s (Secret) Book of Social Rules) shares her thoughts on the universality of the Aspie world. She highlights some of the key questions she’s been asked, and offers her answers, as the wife and mother of Aspies, and as an Aspie herself.
Whether asked in an Irish brogue, a Southern drawl,
or in the Queen’s English, regardless of cultural differences,
government programs or regional attitudes, parents and professionals around the world differ little in their hunger for answers to many of the same questions. There are broader themes to explore, of course. But having just finished up my first international tour, I see that there is one, preeminent, ultra-important truth that I absolutely must share: though every individual, family, country and experience is different – we who love, teach and ARE Aspies have too much in common to ever feel alone.
From the American South to the north of England, from the Irish coast to the interior of Australia, I heard a distinct batch of “Frequently Asked Questions.” And it seemed to me that even if you and I haven’t had the chance to meet at a conference or book signing, a whole lot of folks are probably wondering the same things that my new friends did.
So, with the typical small-print caveat that these are merely the answers I would and have given to audiences and readers near and far, I am just one gal, and a far-from-infallible one at that. My ideas are mine alone, for better or worse. But I sure do hope they work for you, too.
Should I tell my child that s/he has been diagnosed with Asperger Syndrome? And if so, what do I say?
Yes!!!! Here’s why.
Fancy answer: Without understanding that our sensitivities, strengths and challenges come from a very real neurological design, we Aspies (logically) blame ourselves. Where we could see merely difference, we see ourselves as incomprehensibly weird, dumb, less-than, difficult-to-love failures.
Short answer: your kiddo already knows she is different than many other people. Give the difference a name that is free of shame, and you’ve given a young person answers, relief, tools and hope.
Let’s take Aspie and labels and diagnoses out of the equation for a moment. At age 7, I was told that I needed glasses. Apparently, I was pretty-darned nearsighted already. So, how was it that I had never noticed a problem? I’m sure I would have at some point, but I could easily see the paper in front of me—I just presumed that the limits of my sight were the same as everyone else’s. My body was my normal; it still is. Without comparison, I had no idea other kids could see farther and more clearly.
There was a time when moms said, “Boys don’t make passes at girls who wear glasses!” So should I have been denied the tools (glasses and then contact lenses) that made the world more manageable? Would “four eyes” (which I was never actually called!) have been reason to let me try and muddle through, wondering why more and more of life’s tasks seemed ill-fit for me? I’m going to guess that no one would say so! Give the kid glasses, tell others to close their mouths, and be sure to use whatever you need to be your best. Heck, without those lenses, I would never be able to see the letters in front of me now—so thank goodness for diagnosis and resources. They have helped me maximize my abilities and never have I felt ashamed for having less-than-typical retinas!
Same point. My husband was diagnosed with juvenile diabetes at the age of fifteen. His pancreas doesn’t work like mine does. It never will. So, he wears an insulin pump to give him the support he needs to live a happy, healthy, fulfilling life.
Yes. He could toss the pump and cross his fingers, I suppose. Maybe try some tough love? “C’mon pancreas! Don’t be so lazy!” But the fact is that his body doesn’t work as “typical” bodies do. To not tell a diabetic about the way his body operates would, clearly, be irresponsible – in his case, it’d be deadly. Would anyone tell a diabetic fifteen year old that he was “weird” or defective for his biology? Never. The only issue of responsibility would be his parents’ and doctors’ for making sure he understood the way he worked and what supports he would need in the future.
No judgement involved.
Aspie is absolutely no different—once adults forget about the stigmas they may be holding.
A diagnosed Asperkid also has an organ that operates atypically—not eyes or a pancreas, but a brain with district neurological differences. Does that make her any “weirder” or less worthy of self-care than if the organ in question were, in fact, her eyes or her pancreas? No. It does not.
To not tell a child why he thinks, feels and acts as he does is, frankly, not fair. It’s like slipping the diabetic some sugar and hoping he makes it through alright. He won’t! Or like telling me to read the computer screen without help. I can’t! But give an Asperkid information, and you give him self-acceptance. Give him resources and you give him a future.
However well-intended, choosing to withhold a diagnosis from an Asperkid is not kind. It’s not protective. It’s a surefire sentence of anxiety without understanding, isolation without support, and stumbling blocks without solutions. That poor Asperkid is left wondering why he just cannot get “anything” right…and when he does “someday” learn about the diagnosis, the implied message of having it kept a secret is that Aspergers is something shameful or bad.
…which couldn’t be further from the truth.
So what to say? What you tell your Asperkid—as soon as possible
—is that just as people have differently-colored hair and skin, we also have different kinds of brains. No skin color is superior. No brain type is inferior. They are just different—as a rose is from a tulip.
That being said….CONGRATULATIONS!!!! We have discovered that you have one of the most coveted kinds of mind there is—the same kind that probably led Thomas Edison and Marie Curie and Albert Einstein and Emily Dickinson (and scores more) to the most miraculous, memorable discoveries and achievements every made by mankind. As with any “super power,” there are, of course, challenges. Superman had his kryptonite (which wouldn’t bother others at all)—so you just learn strategies for tolerating and overcoming. And then go be amazing! After all, who would remember Bill Gates if he were “typical”? It’s that which makes Asperkids different that makes them precious.
Get them glasses and an insulin pump—that is, OT, social skills support, organizational training, special interest time, etc…the “supports” they need to thrive and to look ahead—seeing themselves and their futures through a hope-filled, reality-based crystal clear vision of what can be—as precious, precocious Asperkids.
Stay tuned for more installments of Jennifer’s Frequently Asked Questions…