(no subject)

May 08 2015

I'm a 46-year-old woman, married with an eight-year-old son. I'm funny and talented and extremely creative. I have a rewarding career in the nonprofit world.

I'm also autistic.

Autism is a difficult concept to grasp unless you're living with it or dealing with someone close to you who has it. Most people are quite uncertain about what it actually is; they just know that it's something really, really bad. That's because autism is a very wide spectrum, and it's nearly impossible to paint an accurate picture with just a short definition or soundbyte.
So I'd like to paint a picture of what autism looks like for me.

I've always been "different." Quirky. Odd. When I was a baby, I crawled backwards. I'm hyperlexic; I started reading at age 2 (yes - really).

Before I was diagnosed, I used to say that I felt like I was "born without skin." You know how, if you hurt yourself and abrade away the outermost layer of your skin, suddenly even the tiniest touch is excruciating? That wound might not look like much to others, but it sure hurts like hell. That's kinda what autism is like for me.

Everything about me is like that abraded patch of skin. If you can imagine the outside of your entire body, every inch, lacking that protective outer layer of skin, perhaps you can imagine the level of anxiety that would create, all the time.

A lot of people think of "high-functioning" autism as primarily an impairment of social skills. (By the way, "high-functioning" is a term I hate for many reasons, but I'm using it here because it may help you understand.) Yes, I'm quite socially awkward. But my social impairment is minor compared to my sensory challenges. I'm The Princess and the Pea, come to life. I'm exquisitely sensitive. I have supersonic hearing ( I wear noise-cancelling headphones all day at work, usually blasting white noise to drown out distracting sounds around me so I can focus. I have a hair-trigger startle reflex. If the restaurant menu has too many choices, I have a really hard time focusing on any of them. To button my shirt, I have to close my eyes to block out visual stimuli so I can focus on directing my movements.

As you might imagine, I spend a lot of time looking like a scared chihuahua. Shaking. Panicky. Awkward.

The hardest part is that certain people seem wired to zero in on my exact kinds of vulnerabilities and relish exploiting them. Those are the people who make having autism really, really hard.

Unfortunately, my own mom was one of those people. Fortunately, I found a husband who's the total opposite of that. He's amazing and patient and kind and funny, and so accepting of my quirks. And he helps me heal more every day.

By the way, don't buy the idea that autistics cannot empathize. If anything, I'm far too empathetic. I cry at phone commercials. For me at least, it's a ridiculous excess of empathy (which created in me a lifelong desire to help those in need and seek social justice (there's where the nonprofit thing comes in).

So, with an audience of over 20,000 people, what one request do I make? I don't need or expect others to really understand autism. The only thing I ask is that you be understanding of others' challenges and quirks. Allow everyone their essential humanity and treat everyone with dignity, even though they may be very different from what you're used to.

That one simple thing? It makes all the difference in the world.

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