[Ed note: This is insanely long. Sorry in advance.]
So… today, for the listening public of the county I grew up in, I told them my truth. I haven’t actually done that before.
What’s following, I find, is a bit of a panic.
I never hid what I am, though I’ve played the roles I felt I was supposed to here and there. But I’ve also never just outright owned it. Definitely not in public.
And this morning, I went on the local radio station and told the whole region.
Not that the region would care, necessarily, nor that I was even a main guest on the show… I was just a tagalong. But for me, saying what I said into an on-air microphone was kind of a deep-breath, mildly terrifying kind of deal. No putting the cat back into the bag now.
I am autistic.
Here’s the quick breakdown of the stats, since you’ll ask and I don’t mind sharing: I received my official diagnosis as an adult. The neurologist told me that if I had come in as a child, I’d definitely have been labeled with Asperger’s, but since I now make eye contact and have suppressed the majority of my previous stims, I now fall into what used to be called the PDD-NOS category. They can only diagnose you by what you still do, not what you used to do and have coped out of. Regardless, it’s all still lumped together under “autistic spectrum disorder.”
So, yeah, I’m technically autistic. I’m “high-functioning,” as they say, and almost pass for “normal”… I just come off as quirky, from what I understand.
That’s not the view from in here. None of this shit is optional or the least bit cute. I am thirty-seven years old, and it is still difficult. Every. Single. Day.
I have hidden what I can. I battle what’s still showing.
Just blaring it out there and seeing where the chips fall? Haven’t done that before. It’s never been secret. It’s just never been advertised loudly, though, either. Just a thing. My own thing. By myself, with my inner circle and no one else.
Definitely not over the airwaves of the freaking radio station.
My family knows, though more of them are skeptical than understanding. My aunt and my mother get it. As far as friends go, I could count on my fingers how many have any inkling and have been into it with me in depth. Cathy (my business partner) and Jerry (my husband) have heard more about this than they ever, ever wanted to – and for that, I thank them. They are long-suffering, caring, and surely sick of discussing it.
But others? It has only ever come up in conversation in very, very limited terms with a select few I care about deeply. That’s it. Everyone else just thinks I have a general phobia of thunderstorms, or maybe a curiosity about autism – but I haven’t outright said why those are both true.
Oh, well, being exact, there was also the one time I felt froggy and tried speaking it out loud at a blogging class I was teaching to twenty-five adult strangers, give or take.
Cathy came up to me afterwards with raised eyebrows and said, “Um…. Wow. That was something of a surprise. I did not know you were going to do that!”
I quite honestly told her, “Yeah, neither did I.”
We were teaching visual thinking in regards to post ideas and writing topics, and I’d drawn up a sample bubble outline for a book I’ve started on Asperger’s Syndrome. Why that for a topic? Simple. It was late at night, and that was the fastest, easiest example I could come up with when our class deadline was looming over me.
Of course I knew I had included it in the PowerPoint. I knew I would show the diagram. But see, I have been publishing books for nearly a decade, both mine and others’, so I figured I could just say, “Here’s an example from a book I’ve worked on.” I had no intention of tying it to my own personal life or even admitting that I was the one writing it.
But that’s exactly what I did.
I looked out at those faces, and I saw my idea map, and out of the blue, I thought, “Oh, f*ck it.”
I pointed up at the giant screen with the slide-change remote. “Here’s an outline for a book I’ve been writing for a while, because it’s something I deal with in my own life. I have Asperger’s.” I was instantly aware of surprised mumbles, the insane heat in my cheeks, and some perked-up, startled expressions, but I just kept trucking. “That’s the main topic, as you see right here in the center circle, so then the next step is to brainstorm different ways it affects daily life. [CLICK] So our secondary topics could be general areas: work, home, family, interests, romance, spirituality. These, I put on the outer rings. So we take each of these further, and fill out any related lines off that, too. Let’s do just one. [CLICK] How does it affect work? The offshoots at this level could be employee relations, coping mechanisms that are workplace appropriate, pursuing insurance benefits…”
I kept it professional and explained it all like I hadn’t said anything unusual, and I didn’t stop. I didn’t mention me anymore; it was about the drawing. Hearing about my crap was not what these folks paid for. When Cathy and I moved to the next topic, they went right along with us.
I didn’t notice until I sat down for her next solo segment that my hands were shaking like crazy. I spilled my tea when I went for a drink. If anyone else noticed my nerves, they never said.
After class, and the exchange with Cathy, she and I were packing up. Several people usually approach us after class with follow-up questions or little networking-type conversations which consist of either their fishing for favors or offering them.
This day, all but one member of the after-class bunch just wanted to talk about Asperger’s. Someone’s daughter or granddaughter had it. Someone else had always been interested in autism in general, and did I want to have lunch? Someone else had come to our class for a blogging education so she could promote her therapeutic learning models, and did I want to guest post?
I chatted politely, and truly did appreciate their input and invitations, but I have no idea what I said.
As is our custom, Cathy and I went to lunch to unwind, recap, and cross-critique about the class delivery while it was all still fresh, and life moved on. I didn’t see the participants again – hell, I didn’t even know most of them. I didn’t think much about it after that except for the handful of evenings that followed, lying in bed in the dark of night and puzzling it all through.
I don’t know why I did it.
It wasn’t THAT I blurted it out… I’m not embarrassed by the information in the slightest.
It was that I had not intended to.
I like having a handle on myself. Not always my mouth, unfortunately, but my actual self. And myself hadn’t had a clue I was going to throw myself into that situation. Why did myself want to? That’s the bit that kept me awake.
Well, yeah. Right up until I forgot all about it and moved on with other things to keep me busy. I’m married, I run two businesses, I have kids and a cat and bills and a car payment, and the stuff of day-to-day life just filled in the space I’d spent worrying about it. I don’t have time to overthink too much anymore.
Fast-forward to today. The day I announced it on the radio in my hometown, sitting next to people I went to high school with but did not know well; being interviewed by my one-time former boss, the station manager; and within earshot of my teenage daughter (who did know) and anyone else who happened to be listening in over the radio dial or the entire internet.
I threw it out there.
This time, though, I knew I might.
I joined a Facebook group a while ago, Dickson County Caring Hearts, and have followed along in the posts and comment threads. I had a couple of friends in there, and felt comfortable enough to mention my sensory issues in a few appropriate-seeming places. I don’t recall ever saying “autism” right out in a visible post, though I know I private-messaged a couple of the members when things with their kids came up that I’d personally lived through and could somewhat speak to.
[Sidenote, but it’s important: You guys know how I feel about weasel words and owning what you say, and if I’ve ever edited your book, chances are good that I crossed out “somewhat” every last time you tried to use it. I intentionally say “could somewhat speak to” here, though, because all I could do was share my own experiences. Autism hits everyone so vastly differently, I would never presume to speak for anyone else.]
Anyhow. Long story short (too late, I know), I’ve tinkered around the group and admired what they’ve been trying to do. It appears to be an informal group so far, but the heart and passion are palpable. They mean it.
When I saw a few weeks back that they were planning a “Sensory Sensitive Skate Night” at Magic Wheels, the local roller rink, I was fascinated.
They’re going to do a test run night where they invite only kids and adults with special-needs issues, and they’re going to turn the whole skating experience into something much calmer and slower and less crowded. The flashy lights aren’t happening, and the music will be very low. Parents can break the usual rule by going out on the floor in regular shoes with their children. Strollers and wheelchairs are going to be whisked across the hardwood, and kids who have never even stepped foot inside the blaring, blazing, shouty-fun place will maybe finally get to feel what it feels like to lose themselves pleasantly in the spin and the wind for a minute without all the overwhelm.
I wanted to help the group reach out to more special-needs kids, so I offered up the two main skills I’ve got: talking things up and earning eyeballs. I got in touch with my friend Chris Norman at WDKN 1260 AM Radio and outright asked him for some interview time.
I’ve known Chris in different capacities for ten years or more. It’s a small town, and we’re both press people and theater people. We’ve been each other’s audience, colleagues, competitors, and probably other things I can’t think of off the bat. He’s a good guy. His mother, Eileen, also happens to be one of my dearest friends.
He never heard a word about my having autism until now.
(Like I told him today in person: Oh, yeah, by the way. SURPRISE!)
When we were emailing back and forth to set this radio interview up, I explained the event and made my personal case for why it was so important. It’s an issue that matters to him, too, for his own reasons he could tell you about himself, and he was gracious and immediately worked to fit a group representative into his packed show schedule.
Since it was all very last-minute (the interview opportunity, not the event), I wasn’t sure the organizers would be able to show up that quickly. I don’t know their work schedules or prior commitments; about all I did know was that they’re certainly special-needs caregivers, and that doesn’t lend itself to drop-and-go planning on the fly.
Just in case, I told Chris that if we couldn’t get the organizers there themselves, I’d be happy to chat the event up myself as best I could and talk about WHY it matters. I don’t own a skating rink or the Facebook group in question, but I can talk about sensory issues until the cows come home. Guess I’ve got a lot of stories saved up.
Well, today rolled around, and even with less than a day’s notice to show, there were plenty of people. All three main organizers came, two with kids in tow, and they were the sweetest, most well-spoken folks you could imagine. They had this in the bag. One of the women told me I should still speak, but I didn’t want to butt in. This was their show, not mine. I’ve been on the radio plenty before. I’m set. This was their moment.
I sat in just as the middleman and an interested observer, and really didn’t expect to take part at all. But then towards the end of the segment, Chris posed a direct question about my own sensory stuff… and you know me. I got started and I didn’t want to stop. I could have talked for four hours.
But here’s the thing I want you to hear: the reason isn’t ego, or that my story is so super fabulous you just HAVE to hear it.
It’s that I remember.
I remember being at skate parties. I wanted so, so badly to love them, like everyone else around me seemed to do.
Oh, God, I did not.
I spent most every birthday or Girl Scout rink party moving strategically between the restroom stall and the food court area, trying to avoid what is now termed “having a meltdown” but was then called either “being a brat” or “being a freak.” Either of those would have followed me back to school quickly and permanently. I had to be careful.
I can remember watching Sarah Hagan in sixth grade unwrap two denim Shane-brand purses with suede patches on the front. (Hey, it was the ’80s. They were rad. Shut up.) I remember the hard Formica bench seats, orange and black like Halloween candy, in the cafeteria area of our local rink in Illinois, and exactly how far apart the floor-to-ceiling poles were, and which signs on the back wall lined up with them just right if you were positioned certain ways in the seat. I remember how sweaty and painful my ears got while I tried to look like I was just leaning the side of my head on my hand, secretly trying to take turns plugging the abusive sounds out of each ear without being noticed. I remember the feel of my fingertips in between the blue cinderblocks of the bathroom as I ran them through the cool paint in the grooves, over and over, counting and counting until I could calm my spastic ass back down and go back out to face the crowd with a fake smile.
But you know what I can’t remember?
One single song I skated to.
One genuine laugh at a skating rink, or a bowling alley, for that matter.
One solitary time I left without a brutal headache and the need to retreat for at least two days to my quiet bedroom away from people to regroup.
Fun? Lord no. It was about getting through it and surviving the night a minute at a time. It was about making it home and out of my classmates’ sight before I puked from the throbbing bass drum in my head. It was not letting free, like it seemed to be for everybody else. I was so jealous. And no, not even jealous, maybe.
I was angry at myself. What the hell was wrong with me?!
And now. Now, I know.
That “what the hell” has a name. It’s a thing. A thing I was born pre-wired with. A thing I can’t help. A thing I can learn to cope with, to muffle, but that will still be with me and percolating under the surface of my skin even on the day I draw my last breath.
Now, I do know.
But I didn’t then.
None of us did.
Look. I could talk about this forever. This could be a 50,000-word blog post, easy. But it’s been a long day, my eyes are heavy, and I still have a headache from being so much in public today and trying to remember what I was supposed to say when.
I may or may not talk about this more on the blog. I haven’t decided yet.
This is a writing blog, and that’s (presumably) what you’ve come here for.
Who wants to hear me rail on about other crap?
Then again, everything I live, everything I feel, comes through this filter. And maybe it’s time to talk more about that.
Because you know what?
I’ve always seen my “Dear Reader” – that single person you’re supposed to write to; not the crowd, but the one person holding the pages of your book who listens and gets it when you talk – I’ve always seen that Dear Reader as a timid, frightened twelve-year-old girl, no friends, who needs words and books to show her the good parts of life she hasn’t seen yet. I have always written to try to give her faith, to prove to her that she’s not alone. To get her to wait out the hard times. To send some hope.
But today, for the first time, it occurred to me in a blogging sense.
I’ve always been Writer Girl, and that’s my generic identity. I dig that. I worked hard for it. I do not want to, and do not intend to, become Autistic Girl.
But if I don’t speak up and say, “Hey, hon, I have this,” then how does that little girl know that she, too, can be bigger than the other involuntary labels she might have been slapped with? What if she even has something similar to what I have? What if she, growing up with the syndrome names and interventions I didn’t have, doesn’t realize she can write her own identity not only because of them, but all the way outside of them?
How is my ignoring that part of my life going to put a true arm around her shoulder?
Whether we have the same problems or not, we all have labels we did not choose ourselves. You do, too. It’s my job to show her, that one girl, she isn’t bound to them.
It’s my job to break her free.
My autism doesn’t limit me professionally.
I don’t say that in a yay-whoo kind of way. Not holding for applause, and not looking for comments promising unlimited whatever if you only shoot for the moon.
That’s not what I mean by ignoring limits.
I don’t see this as a thing. I do have to be careful about what sensory-overload positions I put myself in, but other than that, I try very hard not to make excuses for myself. I try to just deal anyway. I’ve been a waitress in a packed steakhouse on a Saturday night, a daycare teacher for a room of thirteen screamy two-year-olds, a reporter who walks into new situations knowing a given interview subject will likely be hostile. I’ve done some stuff. I can handle life. I’m not that frail, so long as you don’t pop a balloon next to my head or expect me to enjoy fireworks.
My case is very, VERY mild. Two of my prime obsessions as a young kid were writing and psychology, so I kind of read a lot and picked at things until I figured out how to manage. I’ve just about coped my way out of all the copeable-out-of things I know to. (Yes, I made that word up.) I’m blessed in those regards, and I don’t take them for granted.
What I mean by ignoring limits is that I am not an “autistic person who writes.” I am the same writer chick who has always, always posted here, and who has published gobs of things and been lucky enough to be in a lot of visible places with amazing people. I view my issues the way you would fibromyalgia, for example, or diabetes.
Yeah, it’s a thing. Yeah, I’ve got it, and it’s pretty damn chronic.
But it’s not me. It’s not my personality, or my intelligence – or the lack thereof. 🙂
It’s just a thing over there. Like a mismatched lamp.
But maybe I have been avoiding pointing at that corner of the room.
And maybe I shouldn’t.
And maybe I won’t anymore.
I guess I’ll just have to wait and see what “myself” does next.