Cheeseburgers is what my son called Asperger’s before he quite knew how it was pronounced (and before I knew just how much of an impact it would have on our lives). “You know, that thing I have that sounds like a cheeseburger?” he’ll say, on the rare occasion he brings it up. “Yes,” I’ll say, “The thing that gives you super powers?” Which is our way of discussing his “super senses.” But these cute little code names hardly hint at the darker side of a syndrome he, and I, will forever have to live with. Being that April is Autism Awareness Month, and Asperger’s is the misunderstood second cousin of the Autistic super star, I thought I’d take a moment to tell the world a bit more about it, through the eyes of my son and I. And not, I promise, in any cutesy codes.
This isn’t a blog post for children, but for the adults that pretend to know how to parent them. So let’s get real for a moment. It’s all too easy to portray the image of perfection as a parent today. What with Pinterest photos of ideal birthday parties, parenting articles on how to pack the most nutritious (and most adorable) lunch, and Facebook posts by parent peers showcasing various awards and straight A report cards–it’s enough to make those of us with real children want to hurl our boring lunches all over someone’s party shoes. And then pop an anti-depressant or two for dessert.
Sure, I can brag, and every once in great while, I do. And with good reason! My son has gotten an A on just about every spelling and math test he’s ever taken; he practically taught himself to ride a two-wheel bike when he was five; his teachers all tell me he is the politest child they’ve ever known; and he knows the birthday and age of every member (human AND canine) of our extended family. Take that, Facebook! But excellent fact recall, mastering skills through repetitive behavior and obsessive rule following are all common “symptoms” of Asperger’s. These aren’t things he’s made some great effort to achieve– in fact, he can’t understand why his little brother still needs training wheels and doesn’t yet know how to do simple multiplication (his brother, by the way, is five).
What you won’t hear me (or any other parent of an Aspie) bragging about is how he can fly into a rage if someone looks at him while he’s eating; how he worries himself sleepless over the smallest schedule change; how he can stare at a rotating fan or the minute hand on a clock for half an hour while jumping in place out of sheer excitement; how he gets a huge kick out of tricking people and flat out lying; and that he sometimes struggles to comprehend even basic spoken and written directions or ideas. What I rarely admit to anyone, even the closest of friends and family, is how often I have to dig deep to find something, anything, to praise him for during a 24 hour period, during which he has tormented his brother and I to the point of tears several times over due to his obsessive worrying over tiny details, his need to interrupt and talk over every conversation, his streaks of uncanny meanness, and his absolute inability to keep any part of his body still and to himself for more than a nanosecond.
Social media tends to spin Aspies as charmingly offbeat individuals–that dateless, nerdy, college-age male whose hyper-intelligence often causes him to be the butt of every joke. Or the sweet kid no one has the heart to bully once they realize he’s not quite “on the same planet” as the rest of us. Don’t get me wrong, the whole Wrong Planet idea is a great start in discovering how the world might feel to a person with greatly heightened senses and a lack of an intrinsic understanding of social cues. But you can’t lump individuals with a common disorder into some sitcom version of reality. They are still individuals, and if you haven’t spent any real time with an Aspie, don’t spread myths.
For example, many people will tell you that Aspies have no empathy, which is entirely false. When I nearly sliced my finger off, my Aspie was the first to retrieve a SpongeBob Band-Aid for me, and if ever I am ill and nauseous, his little arms are wrapped around me, because he, too, hates to puke. How you feel might not always be as obvious to someone with Asperger’s, but when it is, they get it! Also, I’ve heard it said that Aspies don’t have a sense of humor. But you aren’t there with us in the car when I hold out my hand for his and I get a foot within a dirty shoe in my palm instead, and giggles erupt from the backseat, are you?
The thing that I most wish everyone would understand is that Asperger’s is really just the extreme version of normal. Does the sound of nails scraping a chalkboard bother you? My son is unnerved by the brush of a finger across the page of a book or the sound of skin against certain types of fabric– so much so, in fact, that he will immediately loose his place while reading and get extremely angry with whoever is making such obscene noises. Would you be worried to the point of distraction if you thought tomorrow you might loose your spouse, your job, or your home? Well, if my son’s teacher is out sick, who’s to say he won’t get sick, or that the substitute won’t know when to bring him in from recess and he and the other kids will be left outside all day, or that she’ll try to put him on the bus when he’s supposed to be a pickup, and what can he do about any of it, if his normal teacher isn’t there? And who’s to say his normal teacher is ever coming back, or that the school itself won’t be shut down or set on fire, or a bad guy break in, or… This is called anxiety. We all suffer from it at times, but it varies by level for each person. And for a person with Asperger’s, it is often quite heightened (as it tends to be in those who have to deal with it as well). An Aspie’s keen senses are also heightened, so that a sound or smell that you or I might not even notice has the ability to literally knock my son out of his chair.
The other thing that most people seem to forget (or never think about) is the fact that all of this doesn’t just make life extra challenging for those with Asperger’s. What about those with those with Asperger’s? Parenting a child with Asperger’s is like being thrown a baby to raise, asked to learn a second language and take a night course in psychology, learn the jargon of a doctor, a lawyer and a special educator (IEPs, anyone?) and adopt the patience of a saint all while forgoing your own (obsolete) emotions and personal needs. Oh, and doing all this from the confines of an isolation ward, because who wants to hear about your problems? And even if they did, who, out of the rest of the “normal” population with their Pinterest-perfect children, could ever even conceive of problems such as these? Did I mention I have another child as well, who does not have Asperger’s and who has his own needs, expectations and motivations, which are often vastly different from his brother’s?
Although the knowledge about, and resources for, those living with Asperger’s has greatly improved since the days of Temple Grandin’s childhood (God bless that woman and her amazing mother!) I, personally, still feel most days like I am living in a kind of black hole in terms of support and understanding. And with the rates of Autism and Asperger’s rising exponentially, I know I’m not the only one who feels this way. We’ve got a lot of catching up to do, and I will be the last to brag about my understanding of this specific set of nuances, despite all the specialists’ opinions and the multitude of books and articles I’ve sifted through.
While I can only hope that we all continue to grow in knowledge and compassion when confronting those on the spectrum, in the meantime, I’d like to tell the world that Cheeseburgers aren’t so bad. Having it on the menu day after day can get a bit tiresome at times, both for me and for my son, but we’re making do. He’d like you to know, though, that his favorite food is actually pizza. Technically pepperoni and sausage pizza with onions, banana peppers, jalapenos and a healthy dash of red pepper flakes. Or, in his own code, “Pizza with all the extra spiciness.” And that is just about the best description of Asperger’s I can give you. Because he’s really just your typical pizza-lovin’ kid. And then some.