Whenever I doubt whether I’m autistic (classic autistic move, Btdubs), I remember one of my diagnostic sessions back in 2011.
But first, I want to point out that autism as a diagnosis came at me in such a spooky way. Some of you know this story and some of you don’t, so I apologize if this is not news to you.
There I was, miserable at 31 and unable to understand why I didn’t fit in and why nothing that was supposed to make me feel fulfilled ever did, crying on the couch in Tucson I was glued to and watching “It Gets Better” videos all night.
And then I just happened upon a Bollywood movie about autism. Seriously…signs come in very strange ways. By the end of the movie, I had already begun a Google search about autism in women. There was hardly anything back then. And what did exist was scary and filled with doom. I was reeling from the realization and the bad news. I managed to find one e-book and download it.
By the end of that night I’d read Aspergirls by Rudy Simone. And I was convinced that she was describing me. But how to know? How to figure out if I was just looking for a convenient excuse or being a hypochondriac? For five years I’d been failing at living with bipolar disorder…taking every drug under the sun and getting no relief. I’d lost all credibility and any hopes of ever working as a lawyer. I had no identity except FAILURE in big red blinking caps, even though I had accomplished a whole lot.
I needed a diagnosis. But I had no idea how to get one.
The book mentioned a single diagnostician who worked with adult women. One. Barbara Nichols. I googled her hoping I might find additional resources on diagnosis. Instead I found her LinkedIn profile. Of all the places on God’s green earth for her to exist, it happened to be in Tucson.
I was right to think no one would believe me without a diagnosis. Not my doctors. Not my husband or my family. What most people currently know about autism could fit in a thimble. Imagine what it was like 11 years ago. I didn’t even think I really had it. I was hoping, honesty, to rule it out. Autism wasn’t something I wanted to have.
The session that reminds me that I am truly autistic involved linguistic tests asking me to explain idioms and jokes. It also involved flash cards with just the upper halves of faces drawn on them. I had to guess the emotion associated with the facial expression.
I FAILED. Hard. Like clear cut failure. Like “can you see the number in these dots” colorblind test failure. I took it hard. I felt ashamed.
You see, when you’ve been living a lie for 31 years, you get pretty good at faking things you’re bad at. You’re never good enough to pass all the time. Just good enough that you can recover when you flop. It comes from decades of embarassing yourself. Embarrassment is people laughing at you, talking behind your back, asking you why you’re so dumb or lazy or thoughtless. You don’t know why you’re so bad at all these things and how everyone else seems to know them and be good at them. You just feel certain that something is wrong with you and you have two choices: fake it fake it fake it or go live in a cave in Serbia with goats for the rest of your life.
Societal pressures on women have us choosing the former anyway, so I didn’t know what was real. Does everyone get this but me or are we all as miserable as I am and I’m just worse at hiding it?
The answer was neither. The answer was that I am autistic. I am different. I’m always going to perceive the world in a different way. Sometimes these perceptions will overlap with neurotypical people and sometimes they won’t. Sometimes the way I perceive the world makes me feel lonely the way it used to when I didn’t have a word for what I am. Sometimes it makes me laugh and it makes you laugh, too, because no one has pointed out how weird things are that we take for granted.
When you’re autistic, you want other people to understand. You have to play this fine line in saying, “Here’s a thing I do because autism. It’s probably something you might have some familiarity with. That doesn’t make you autistic. It doesn’t make everybody autistic. And it can’t be reduced to ‘everyone does this so you’re not autistic either, Vene.’”
I have to help people understand in ways they can connect to while also helping them understand that autism is not just a list of symptoms like some cafeteria menu. It is a profound difference regardless of how I appear on the outside. Give me the benefit of the doubt, not because a diagnostician gave me the autistic seal of approval, but because I have no reason to make this up.
If the things I said were lies, I’d have a novel on the New York Times bestseller list and I’d be spending Christmasses at Oprah’s Santa Barbara compound. I’d be flush with cash.
But I don’t. Partly because I’m autistic. Partly because I’m an altruist and my main motivation in life is to help. It doesn’t make me a good person. I struggle with being good most days. I struggle with kindness vs. truth.
I struggle with reality. I have a diagnosis and I still wonder if I’m making the whole autism thing up 11 years into it. It eats up emotional energy. I don’t know if that ever goes away because there aren’t exactly a lot of previous generations of autistic women to guide the way. They’ve always existed. But they didn’t live in the “autism” paradigm. I’m on the forefront of this in many ways. It’s the great unknown. And it can be scary sometimes.
But it’s also liberating to know that I can make my own rules and live by my own code and never feel beholden to a neurotypical society. I can keep pushing the envelope. And doing so benefits a lot more people than just me.