Asperger’s From The Inside.
There are magical beings among you, disguised as ordinary women.
Wait, is any woman ordinary? Never mind, leave that for another article. These particular women are princesses in hiding, guarding a priceless treasure. Though they may think of it as a dirty secret. Perhaps it can be both. It’s called Asperger’s Syndrome, or autistic spectrum disorder.
More often diagnosed in boys, Asperger’s presents unique challenges in girls. They may not be diagnosed, or be diagnosed wrongly. It haunts them, makes them a breed apart from anyone that they know. Yet it also bestows gifts that they may not even be aware of.
I am one of these women. I used to be ashamed of whatever it was that made me different. But I’ve slowly come to realize that it holds a deep and fragile beauty. I’ve heard others say that it was a relief to finally know the cause of their discomfort, and to know that they aren’t alone in feeling how they do. And that’s an important thing.
Most of us, who could be called Aspies or high-functioning autistics or even the more recently coined term highly sensitive, feel alone. We grow up feeling disjointed, out of touch with the norms of the society around us. And more often than not, it feels like our fault. “If you’d just try a little harder,” say the teachers. “Come on, don’t be shy,” say our peers. “Go on, make friends. It’s not so hard,” say parents and caregivers and well-meaning others.
Do I need to point out that it’s not that simple? If deciding to not be shy actually worked, we would all have been cured a hundred times over. We don’t try to be awkward, or shy, or overly sensitive, or aloof. In fact, it’s often quite painful to be the one on the sidelines, watching the world go on happily without you.
Finding others who got lost in the cracks is reassuring. No matter how off-kilter you feel, there are others who feel the same way.
And yet, on the other side of the coin, there is a part of me that deeply dislikes the terms Asperger’s and autism, and the experience of being diagnosed. This isn’t a disease, though on reading some of the official literature you’d think it was the invisible version of Ebola. “Screen your children for autism by the age of two!” Or what? They won’t get enough drugs in their system to make them compliant for life?
Having my experiences and way of thinking arbitrarily tossed down a hole labeled Autistic Spectrum has been rather disconcerting for me. Yes, on the one hand, comforting and enlightening. But I am more than some mumbo-jumbo psych analysis that no one without several PhD’s can possibly comprehend.
I am so much more than a list of symptoms and social inadequacies.
There are some aspects of my experience that coincide with one or more criteria. There are many that used to but don’t anymore. And there are many that never did in the first place. Talk for hours about my interests? I doubt I’ve ever talked that long in my life. And I tend to avoid talking about my interests, unless asked. Even then I make sure not to bore anyone with the details.
Don’t let anyone, psychologist or not, limit what you’re capable of. Never let them tell you who you are. And never limit yourself to having to stay within the bounds of your ‘diagnosis’.
Despite all that I’ve heard and read concerning the autistic spectrum, my experience continues to surprise me. It changes. I change. And perhaps one of the reasons I dislike the labels is that they don’t allow for change. The common perception is that certain concepts, activities and social norms are, at best, difficult to navigate for a person on the spectrum and that it always will be. All one can do is try to acquire some social Band-Aids and soldier through.
I’ve had plenty of soldiering through painful situations, but over time I’ve also managed to acquire more than Band-Aids to cover my social flaws. Through a lot of embarrassment and trial and error, I’ve begun to learn social skills; I’ve taught myself to look people in the eye, until it’s now a habit and I don’t notice the discomfort that it caused when I was young.
Having a conversation with a stranger would have nearly caused a panic attack once; now I notice some chest tightening, some butterflies, some mental confusion, but it abates. It never used to, not till long after I’d gotten home and played the scene through a dozen times.
Of course I still have a lot to learn, but doesn’t everyone really?
To those who know and love someone with a diagnosis on the spectrum, please remember that the spectrum is wide. And no one has to stay where they started. Please don’t make assumptions of what we can or can’t do, or even worse; what we want or don’t, what we feel, what we are or are not afraid of. We’ll probably be more than happy to tell you, if you just ask.
Please don’t trivialize our fears or worries. You don’t need to tell us when they’re irrational or unfounded. We’re quite smart enough to figure that out but, in that moment, it feels as real as death, and the last thing we need is to be laughed at. The same goes for our hopes and dreams; maybe they don’t always seem logical or probable; maybe they seem outright silly.
Remember, internally we are undergoing far more transformation than you’ll ever know. One bit of silliness may just be the first glimmers of a new sunrise.
Please, for the love of all that’s holy, do not treat us like children. Given that we have very sincere souls, if you are being patronizing you will lose our trust. We don’t need condescension, we need to be valued for what is true about us. And what that is, we might not have a clue yet.
Gently show us our own strength, and we will love you forever.
It’s not that we don’t know how to interpret social cues and facial expressions. Most of the time, it’s how best to respond that causes confusion. We reckon value by a different yardstick, that is all. And more often than not, social niceties just don’t seem worth it. Don’t expect meaningless words from us. Like it or not, we will blow away all the fluff we need to in order to find what is most important.
We really do have feelings, very deep ones, and very deep empathy. Sometimes too deep, sometimes so painful that l we want to hide down a quiet, dark hole. But our love, once given, is boundless. For that very reason it may be extraordinarily difficult to express. Please be patient, we’re worth it.
We have spent our lives feeling like we landed on the wrong planet, like our very nature is not suited to this world, like every glance our way is looking for what is wrong with us, why we are different. And all we want, is all that anybody wants. To be okay. For our voices to be heard; even if we whisper, we have much to say. We laugh and cry, discover and learn and grow, stay awake at night yearning to create something beautiful out of the ashes of our pain.
We want you to see us, and hold us, just as we are. As we really are; not as some disembodied expert pontificates us to be, but the living, breathing person who is, right now, waiting for someone to look into her searching eyes and find her.
Smile for us, and we will smile back. Keep safe what we give to you, for we do not entrust our treasures lightly. But we will guard yours forever.
Give us trust and respect, and we will rise up like the sun.
Jessica Myscofski is passionate about photography, writing, travel, and discovering the beauty hidden in the mundane. She is recovering her voice from the grip of Asperger’s, and learning to love the journey. She lives with her family in northern Colorado. Visit her blog, or view her photos.