Back in April I wrote an article that I never expected to write, on a topic that I usually avoid. That is Asperger’s Syndrome, or Autistic Spectrum. And I was very surprised when Rebelle Society published it. But that was nothing to the response I got from the article. Having written about deeply personal issues, it was astounding to read comments from so many who thanked me for perfectly describing their experiences with AS. I am still grateful for those connections.
Recently I read back through my original article, and thought of a few additional points that are worth mentioning. Also, Rebelle Society is currently down for updates, so I’m copying my original document here for those who can’t access it through Rebelle.
(published April 2015)
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. Here are some of my observations on what it is like to be diagnosed with Asperger’s.
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,” said our peers. “Go on, make friends. It’s not so hard,” said 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 to read 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 Ph.D.’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.
I suppose what I’m trying to say to all you fellow “Aspies” out there, is: There’s more. 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 and 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, till 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. Ditto for our hopes and dreams. Maybe they don’t always seem logical or probable. Maybe they seem outright silly. But 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. But please, for the love of all that’s holy, do not treat us like children. We really do know when you don’t mean what you say. And 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, 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 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 are we 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, once we know that we have it. Give us trust and respect, and we will rise up like the sun.
And here is the follow-up post I wrote to address a few issues that were brought to my attention by readers.
All right, so my updated take on the whole thing is but is not different now. Fundamentally those things are still true. Most of those things are still to some degree difficult. And yet not impossible. I have done more things in these last few months that I thought hell would freeze over first. But I survived. And learned that I’m strong enough to tackle yet another fear. One more demon looked in the eye and set free from the prison of self-doubt.
And in this ongoing process, have I ever learned some things! Not all of them can be put into words yet, but I’m going to try.
Asperger’s can be difficult, yes. Painful, yes, and awkward and isolating. Yet, connection is possible and far more accessible than it sometimes seems. We are locked inside our heads so much as Aspies, it can seem that no one could possibly understand what’s inside our little worlds. Or is it perhaps, that no one could possibly care enough to want to?
I am learning–more slowly and painfully than I would like–that others do care. And in my certainty of aloneness, I push them away. Without fully realizing it, without intending to be rude or insensitive, without ever intending to cause hurt, I turn and flee to the familiar safety of my small world. I know how to navigate there. I know the depths of my own passions. In anybody else’s world, I don’t know the rules. It isn’t that I don’t want to be a part, but that I don’t always know how.
It is a common misconception that Aspies don’t have empathy, don’t feel deep emotions, and have no desire for social interaction. All of these are unequivocally false. However, we may not express those feelings as easily or as broadly until we are sure that the recipient is trustworthy. We do want to participate in the wide world, and friendships are of utmost importance. Important because they are so often difficult to forge in the first place. And again, our rules are different.
Do they like me? That may seem a simple question, but for us it is inexplicably hard to answer. And others may not feel the need to quantify what they assume is already clear. We might need a little more clarification, because we don’t automatically assume. Do you like me as a friend? Is it just our shared interests, nothing more? Are you giving out mixed signals, which we find baffling. Let us know, clearly and kindly, what it is you’re thinking, and what it is that you expect from us. Unspoken promises are just too confusing. What’s more, they usually end up being the silent weapon you can’t defend yourself from.
All that said, I want to make clear that Asperger’s is not some blanket excuse for bad behavior. And it’s not a good reason to sit back and let life go by unlived. Whatever you do, however many mistakes you make, please don’t let life go untouched. Don’t let opportunities go by untaken, or words unspoken. You never know the embers that may be waiting for your spark to set them alight.
Courage may have to take baby steps sometimes. But it moves nonetheless.