“Funny, You Don’t Look Disabled!”

I have not failed, I’ve just found 10,000 ways that don’t work. ~Thomas Edison (theorized by some to be an Aspie)

Someone with Asperger’s really is like you, just more extreme. ~Dr. Winnie Dunn

LOLcat physicist in training

Occasionally when I write P&Q, I have to stop being purely silly and get a bit more introspective. Since I’m in a more serious mood tonight, I regret to announce that any references to elephant flatulence or men named Richard Head are out, at least for a 24-hour period. I’m in a more intense mood, and I feel the need to address my “invisible” disability.

For those readers who may not know, I was diagnosed with Asperger Syndrome (AS) at a relatively late age in my life. It’s not an obvious disability in the way loss of vision or confinement to a wheelchair are. Those who know me casually may not even think I have a disability at all. “She’s just eccentric, keeps to herself,” they might say, or perhaps “She’s just a little different.” They cannot put their collective fingers on quite how this is so, only that it is. Also for those who may not know, AS is a (usually) high-functioning form of autism. The rates for diagnosis are climbing, with some researchers estimating 2 to 3 in 10,000. Whether this is because of increased capability for diagnosis or some other factor(s) remains unknown. That, however, is another topic for discussion.

I have lived almost 32 years with AS. Only within the last ten years or so did I have any idea that AS existed at all, and only within the last calendar year did I have any form of specialized support. Because I was always at the high-functioning end of things…being able to live alone, pay bills, learn to drive…no one really suspected I needed any help. I found a way to help myself. But my disability was still there.

Another AS thing: happily playing alone

Now that I know for sure, and I’m plugged into a helpful adult AS support network, a lot of things have become clearer for me. Why, for example, with my high academic ability and alpha streak, was I not on the fast track to a successful career? Why wasn’t I looking for dates and long-term relationships like other young women? How was it that I could memorize long strings of numbers but forget people’s faces five minutes after I saw them?

Read any book on AS, and I’ve got many of the classic signs. Comfort in routine and repetition. Adverse reactions to sudden lights or sounds. Near-Elvish sensory input levels. Obsessive interest in a few specialized topics. Again, since I was always so self-reliant and seemingly intelligent, no one thought for a moment that I could be “disabled” or require specialized help. If I didn’t know, I was apt to learn how to do it myself through reading a few articles, right? This was, after all, the girl who had designed and built her own small catapult after studying some diagrams in a book.

In an earlier post, I came up with a metaphor of a large Boeing 777 jet that is capable of flying for some distance on a single engine, though these planes are large, multi-engine machines. Yes, the plane (me) is capable of using one engine (intelligence, charm, street savvy) to make it to its destination. If this becomes the norm, however, the single engine is going to become overheated, and I wind up spending all my spare time in the diagnostic hangar (sleep or a near-catatonic state.) I’m one of the lucky ones in terms of being able to get by on the one engine. Once I get home, I find that my energy is gone, and I need to overcompensate. I’d call that a disability in the same way a diabetic or recovering cancer patient might need extra time for R&R.

I’m also fairly lucky because I am, by nature, more stoic and introverted than many of my fellow Aspies (yes, there are extraverts and introverts even among autistic people.) An extravert might go running for help, or wail at the top of his/her lungs in the event of an emergency. Me? Like a big cat, I merely retreat to my den, licking my wounds, not wanting others to see the extent of my pain.

No more folk music, period!

If you want the unvarnished truth, I’ve been driven to pounding migraine headaches, blackouts, vomiting, nausea, and skin rashes at various times by various stimuli, from strong perfumes to strobe lighting. I don’t like my senses being strained and I’ll do anything to avoid overstimulation. I also don’t like being touched by strangers. People may think they’re being friendly, but to me, it’s the equivalent of having a hot curling iron held to my arm. A door slamming down the hallway may mean nothing to you, but to me, I may duck and cover as if I’m re-enacting a Cold War-era safety drill. It’s the little things.

Some NTs (neurotypicals, or, people without autism) may accuse me or other Aspies of being overly sensitive. And we are. It’s part of our genetic makeup. I’ve often had a fleeting fantasy that maybe we are the descendants of Tolkien’s Elves, or Atlanteans, or perhaps an alien race like Mr. Spock’s Vulcans. It would explain a lot of things. At the same time, would you accuse a diabetic of being overly sensitive when needing insulin? A blind person of being needy when asking for a book in Braille? Because AS is not an obvious disability, many do not see it as such.

I’m also learning, through the assistance of a kind mentor also on the spectrum, how to ask for the things I need, and why these requests are reasonable. They are things to help me on the job, at home, out in public. The phrase is “reasonable accommodation,” and it’s a suitable one.

There are those who still have a hard time believing that I could be disabled. I drive my own car, own my own home, don’t rely on outside sources for support, can hold in-depth, intelligent conversations, don’t need a cane or a service animal. I even write my own blog. (My dream job, of course, is to one day support myself exclusively through my writing.)

As I continue to learn much more about AS and how I fit into the AS community, there are often more questions than answers. Is there a cure? (At the moment, no.) Am I allowed to ask for reasonable accommodations at work? (Yes, I can.) Is there work out there which will suit my talents and abilities while also considering my AS? (I certainly hope so.) The good news is that I have found a community who understands, and who are willing to help me get to where I want to be.

I’m willing to bet many of my readers know someone with AS, or perhaps have a child on the spectrum. The numbers are growing by leaps and bounds. I only hope that one day I can serve as an ambassador between the NT world, which sees the forest, and the AS world, which stops to admire each individual tree in agonizing detail.

Until that day, and until I find my “dream job,” I’ll keep learning, keep recovering my strength each night, and keep writing P&Q. I promise to return us to our regularly scheduled esoterica in a couple days. Until then, live long and prosper…

I'm shy and I have AS...but I'm okay!

To my readers: Thanks for taking the time to read this very personal edition of P&Q. I appreciate all your support and comments.

~ by Howlin' Mad Heather on March 7, 2011.