Hell Toupée: Asperger’s, Social Anxiety, and the Costs of Stepping Out

At some point early Saturday evening, I said to myself: there’s going to be hell to pay.

(Whenever this phrase comes to mind, I’m reminded of a TV show I saw decades ago, about a hairpiece that makes its wearer kill people. Puns and wordplay stick to my mind like burrs, and sometimes I can’t dis-spell them until I say them out loud. Googling the phrase to refresh my memory, I was surprised to learn that this pun is now a cultural meme, attached to a certain politician who looms large in the collective mind at this point in history.)

Anyways, the reason I said this thing (about toupées) to myself was this: I was in a huge, noisy room full of other human beings. Sally and I had driven three hours to attend the 90th birthday celebration of an old friend, an activist and teacher beloved of her many communities. There were a couple hundred people, all in one huge room at the back of a restaurant. There was a stage and a band. There was a microphone and speakers and memories and applause. There was a video commemorating her life. And there were dozens of friends and acquaintances there that I’d known or seen or run into in my previous life, all wanting to talk and hug and connect. Having moved away from the community in ’08, it had been many years since I’d seen most of them.

Now, I am completely capable of attending such a gathering. I’ve done it all my life, and will no-doubt choose to do it again. I can talk to people when I have to, think of things to say, even ask them questions. I can put my arms around them and squeeze. I can smile and laugh. I can manage my anxiety in the moment, ignore it, suppress it, channel it. I can appear to be a “regular Joe.” Not a problem.

But what I know now that I didn’t know for most of my life is how much it costs me to do these things. Whether I feel it in the moment or not, I know that I will feel it later. Every one of these seemingly small social™ interactions drains a bit of current from my life-energy battery. And every moment of suppressed feeling ticks away a second on the countdown timer wired to the emotional implosives strapped to my heart.

Lost in the social forest, I lurch and stumble down confusing conversational ravines and up imposing face-to-face ridges, looking for the major highway that will take me back to my sweet home of known routines, understandable interactions, and the quiet contemplation of my special pursuits. And as the sun sets over the treetops, and the highway is nowhere in sight, I begin to panic.

So, actually… I guess there is a problem.

The anxiety started early, as we rose and packed and hit the road. It bounced around my mind as I drove. It settled in as we neared our destination a few hours ahead of the event. It began to loom large as the hour approached. It began to laugh and sneer and poke me in the side.

It felt like worms wriggling in my stomach. It felt like stale electricity lodged in my arms and hands. It felt like weakness in my legs, as if I’d just spent days in a hospital bed. It felt like extra heartbeats and fast, shallow breaths and thick fog settling like a cold, wet blanket over my mind. It rose up in fury when, stopping at a thrift store to pass some time, I watched from a distance as Sally was accosted by an old friend demanding her time and attention, a woman who felt so toxic to me that I could not go near her, and toward whom I was moved to send mental commands to shut up! and go away! It grabbed me and threw me to the bed in the room we’d rented for the night, and forced popcorn down my throat until I was stuffed.

And then it was showtime.

I made it through the gauntlet. Awkward greetings, hugs, and strange cheek-kisses with our old friend whom we’d come to celebrate, and her sons who were hosting the event. Brief hellos to a few friends as we made our way to the back room. Arriving early, we were able to snag a large, round booth, big enough for Sally and myself and her kids and grandson, and set apart with wood and padded seating at the edge of the room. From there I could moderate my activity, either by confining myself behind the table, standing at the booth’s “entrance,” or venturing out onto the battlefield.

I ordered a draught, a wonderful Belgian tripel called “Merry Monks,” and drank it quickly, the occasional beer being one of the few anti-anxiety meds I allow myself. I ordered another. The room was filling quickly, spilling over with loud conversation, as if everyone in attendance was screaming into their cell phones. There were waves and greetings and smiles and hugs and snippets of conversation above the din (or largely lost to it, to my ears) as people made their way over to see us, glad and surprised that we’d made it.

The grandson arrived, parents in tow, giving me something (in the absence of a dog or cat) to relate to and focus on. (With a child at your side, or a cat on your lap, all attention is diverted away from you, and onto them. And there is always something to talk about, should talking become necessary.) With the parents there, we could go ahead and order some dinner, and I selected my other anti-anxiety med of choice: a cheeseburger, this one piled eight inches high with special sauces, jalapeños, lettuce, tomato, cheese, and a mound of onion rings, all held together by the largest toothpick I have ever seen. Like the young King Arthur, I pulled the sword from that stone and focused my attention on the problem at hand: how to fit an 8″ high sandwich into my mouth.

All in all, I felt like I was doing pretty well. I got to see a few people I’d known fairly well at one time, and was glad to exchange a few words of catching up. The food and drink were delicious, and filled me with their magical medicinal powers to blunt and mellow. And it was fun, to exchange jokes with Sally’s son and daughter-in-law (fellow introverts,) making observations about the room and the situation like three stand-up comedians rehearsing our routines. Ah, let me tell ya, parties, ya know what I mean?

But I’d been through this before, and knew that such hopefulness could be deceiving, and could hear the countdown timer ticking, and knew that at some point my meds would wear off, exposing themselves for the double-edge swords they really were. Hence the thoughts about killer toupées.

So I used what strategies I could recall in the moment. Sometimes I just closed my eyes and listened to the room, the cacophony of voices which demanded my attention from every direction. A couple of times I allowed myself to lean forward and cradle my head in my arms on the tabletop, regardless of the stories the poets might some day tell of such an egregious display. I stuck close to Sally, who serves as both ambassador and translator when we visit such foreign lands as this. And I wandered off to the dark corners, to look over the drum kits on the stage for inordinately long periods of time, or to examine the architecture, about which I have little interest.

The music, when it came, offered me some salvation. With the decibel levels so high, there was no way to have conversation, so the pressure was off. All there was to do, really, was dance, and Sally and I hit the floor. I can count on one hand the times I’ve danced in public in my life. Curiously, the story of Asperger’s has set me free in that regard, and I was eager to get out there and move. We danced and danced, as the local band, a regular gigging group made up of friends and community members, played and sang for the celebration. We danced just the two of us, Sally and me, eye to eye and smile to smile. We danced in threesomes and foursomes. We danced with the grandson, at one point forming a circle with him and two other grandparents. We danced and moved and sweated and clapped and hooted. It was quite glorious, actually.

And then the band went on break. And the loud conversations resumed. And after one weird, stumbling interaction with a man I’d met once many years before, I leaned over and said into Sally’s ear: I’m done. She was done too. It was time to go. We said as few goodbyes as we could, made our way to the door, and stepped out of the forest, and onto the major highway that would take us home.

To riff on the immortal words of the Marquise de Pompadour, the lover of King Louis XV of France (attribution questionable), après la fête, le déluge. I’d made it much longer than I’d guessed I would, and had managed to pull off my usual trick, which was to appear as though attending such an event was a piece of pie, as easy as cake.

But after the party, the floodwaters of feeling began to flow across my awareness and rise above the banks of my heart. If, in my past, I’d have continued to ignore, discount, suppress, or deny this flood (until such time as it grew to such powerful immensity as to wash that life away entire), now I am unable to hold off the rising waters for long. Back in our room, my head swirling with remembered moments, the meds wearing off, I was overwhelmed with exhaustion. My emotional and psychological battery banks were blinking red in warning. My heart was pounding. My mind felt stunned. We fell into bed. Sally wanted to watch an episode on Netflix to ease her into sleep, so keyed up was she. I could barely watch, and was thankful when the balking Internet forced us to just turn it off and go to sleep.

The next morning saw more conversation, with two old friends who showed up at the restaurant where we were having our breakfast, and then with Sally’s family, with whom we wanted to hang out for a while before we headed home. It was pleasant and fun, to be with people I liked and wanted to know. But I knew I’d started the day with weak batteries, and as the morning ran on, I began to feel a growing, panicked urgency. Nice or not, I had had enough, or way too much. By midday, we were on the road.

In the car, I said to Sally that I had no words left, having used them all up in the past twenty-four hours, and asked if we could just be quiet together for a while, and told her I’d be fine if she just wanted to work on her laptop. Sally, an introvert herself, and understanding of how it is for me, was only too happy to go along with that plan. She dove into her ongoing online research about diet and health. I dove into my anxiety.

In the Asperger’s/Autism world, there’s something called “stimming,” repetitive self-stimulating behaviors which can increase in frequency and intensity in times of stress, and which may bring a measure of calmness or control for the “stimmer.” The stereotypical stim is rocking back and forth, maybe even hitting one’s head repeated on the wall, but self-stimulation can manifest in a variety of ways, from hand flapping to blinking to vocalizations to lots of things. You’ve seen Rain Man. You know what stimming is, even if you didn’t know the term for it.

In my case, stimming happens mostly in my hands, though I’m also a life-long foot tapper, leg bouncer, and face scruncher. I never really understood what all this activity was, or that it had a name. I just knew that I often moved my body in strange ways, which I learned to hide as best I could. I was a jumble of nerves, you see. High strung. Full of ticks. And it’d been with me my entire life, in one form or another. Sally, back in the pre-Asperger’s days, used to joke that I was communicating with the mother ship. That explanation made as much sense as any. I would wave my hand to erase the thought, and the memory of the thought, from her mind, as all we aliens do, and we would think no more upon it.

These days, with greater understanding, I allow myself to be more aware of my responses, and I allow myself to allow them. Sitting there in the car, with no one present but Sally and myself, I just let myself indulge the sensations. It was as if my hands were still on the dance floor.

Imagine pulling on a pair of latex gloves. Ones that are too small. Feel how tight they are, though in some places they’re too loose, like the fingertips, say. Feel how the latex pulls at your fingers, how your palm curls in on itself, how you itch to tug at the latex in the hopes that you can relieve the discomfort. Now imagine that latex all over your body, covering your hands, yes, but going up your arms to your elbows and shoulders, climbing up your neck, covering your face. Feel how it mushes in your nose, how it pulls at your hair, tugs at your armpits. Feel how hot it gets, and how trapped your skin feels, and how your muscles ache for release.

That’s how my body feels when it’s flooded by stress. It feels like who I am does not fit into the body I inhabit, which is why I sometimes refer to my body as “off the rack.” In response to this feeling, I begin to move like Joe Cocker on a really bad day, flapping and twisting my hands at the wrists, pulling and stretching my fingers at every knuckle, and gently windmilling my arms and shoulders around like a slow-motion Pete Townshend (as best I can given the confines of the car). And I tap patterns and codes on my fingertips, over and over, as if my hand is a miniature drum kit. One-three, two-four, three-five, four-one, five-two, my thumb moves around the kit, maintaining a tight pattern, advancing from drum to drum with each iteration. And if there’s music playing (and there was), I do it in time, and add flourishes and fills and furious solos at the appropriate places.

My thoughts follow in lock step, replaying repetitive beats of snippets of conversations and moments of confusion and instances of self-judgment, as if mental bots are busily crawling the wide web of my inner world, storing pages, updating changes, and indexing my experience. And just at the edge of my awareness, another stim plays out, as I push and distort the flesh around my face enough that I can grab little hairs from my mustache and yank them out with my teeth, or pull them out with my fingernails. The almost imperceptible jolts of feeling I get when I do that, some bordering on pain, are so compelling at such times of high anxiety that I cannot resist them. If you see me, and my mustache looks like a scraggly woodlot after the loggers have left, you can know it’s been a stressful week for me.

We drove on. The stimming started, played out, peaked, and receded. By late afternoon, when we got home, I’d settled down a bit. We unloaded the car, then headed right out to the beach for our daily hour-long walk. More stress fell away. Slowly the batteries regained their charge. We made a big salad and heated some leftovers and watched Kevin Spacey revel in his evil. I fell asleep again, and dozed fitfully until 3:45, at which time I rose and made coffee and started to write.

I needed to write, you see. Because often it’s not until I write things out that I can really understand them. If healing comes when we offer the truths of our experiences to the village, and have them accepted as gifts, then this is how I do it, and ya’ll are my village. In writing, the circuit gets completed and the energy, that which is still locked in my flesh, can flow to ground. Après l’écriture, la paix. After writing, peace.

I wish I could tell you why I’m so anxious. Much of it is due to trauma, no doubt. I’ve made so many mistakes over the years, and set off so many bombs, encountered so many reactions, and so little of it has really made sense to me. But it’s also true that I was born this way, with a genius mind that notices everything, and a hyperactive limbic system which is prone to overstimulation and overwhelm. While others are smiling and hugging and kissing and chatting, I’m wondering whether my face looks normal or is overly contorted, or which cheek to offer, or how hard I should squeeze, and whether my fingers should be open or closed when I do so, and whether I should say something in response to their greeting, and if so, what exactly? I’m thinking about what to look at, and how soon can I break off eye-contact, and whether this person is going to need something from me, and whether I’ll have it if they need it. I’m hearing snatches of a dozen different conversations going on around me, and trying to choose which one to attend to. I’m feeling the lights overhead as they shine like police flashlights on the corners of my eyes. I’m noticing sweaty palms and asymmetrical faces and strong perfumes and hands patting my shoulder for God knows what reason. I’m still back on the first thing somebody said, trying to figure out what it really means, or why they said it, or whether I agree with it, or what I might say in response, while they’ve moved on three or four sentences ahead of me, leaving me in their conversational dust. And all the while, the heart is pounding more and more quickly, and I look up through the trees at the sun as it lowers in the sky, and I imagine myself, lost and stumbling in the forest at night, cold and alone in this land of spiders and centipedes and the memory of bears, just wishing for my sweet home.

I know that the forest holds no real threat to life and limb.

It just doesn’t matter that I know that.

Because it’s the threat to self that’s the real danger.

Amongst so many people, so much stimulation, so much noise, I lose my self. The sweet, smart soul I’ve worked so hard to find and reveal takes a step back into the background. Because he has not yet found a way, in real time, face-to-face, to share the truth of his experience to his village, in such a way that it can be received as the gift that it is.

But slowly, in smaller venues, I’m getting better at it. And here, on the page, I can regain my tongue. I had my first-ever full-on lucid dream the morning after the party. A nightmare, really, with me thinking myself awake, but then realizing I was still asleep, and caught in a dream from which I could not awaken, despite my screaming and crying and thrashing about. When I finally awoke for real, I told it to Sally, as we always do, thinking that dreams have meaning for our lives.

Maybe I’m slowly learning to wake up in my waking life.

Maybe, as new layers of self-understanding and acceptance settle into place, I’m beginning to have a lucid life as well.

 

 

8 Comments for “Hell Toupée: Asperger’s, Social Anxiety, and the Costs of Stepping Out”

Sally Erickson

says:

I would love for you to have a live village where who you are could be seen and appreciated in real time. Writing is certainly a good first piece of that. At least it is for me when I write in my journal. It can constitute some sense of expression and acknowledgement and completion. I wonder if in other times and other places the village had time and ways to offer that to it’s members in real time and if most of us would not find some fulfillment if we had more of that.

says:

thank you for letting us into your challenging world. i overlap with a little of what you are writing of (as an introvert), and can hardly imagine the bravery that you have to step forward with such greater challenges, and i admire you, and sally <3

Timothy Scott Bennett

says:

Thanks, Marlowe. Some days I feel really exposed. But most days, it feels right, to write. Helpful for my own understanding, for sure. Hopefully helpful to others. Thanks for checking in!

Susan V.

says:

What a wonderful post, and coincidentally next weekend I’m attending my aunt’s 90 birthday celebration with my 2 sisters and brother-in-law. It will be a much smaller and no doubt quieter event than yours, but I’m already anxious about it.
I don’t like flying, am worried about screwing up with the TSA rules (I haven’t flown in a number of years), and I’m really nervous about spending that much time with my family. I’ll be sharing a room with my single sister who I have a hard time relating to. I’ve developed an evening routine that works for me that involves shutting down all electronics at least an hour before bed and dimming lights and wearing these blue light blocking glasses. I’m worried that she will think I’m crazy and will want to have the TV on late. But family is important at this stage in my life, especially after a fairly recent break-up of a 10 year relationship.
I really identified with what you said about the dancing an music. I used to love going out to dance when I was younger, but hated the actual bar scene, and just wanted to dance alone, not with some guy I’d never met. Not that I got asked to dance much anyway!
One last thing to share is that I’m suddenly realizing that i “flap” a lot, hopefully mainly at home. I do it when I get overwhelmed or make a mess in the kitchen, which is basically every time I cook! I also have many other stimming habits. All those years I never would’ve conceived I could have Asperger’s. Getting close to wanting to get an official diagnosis now.

Timothy Scott Bennett

says:

Wishing you the best with all of that, Susan. The family seems, to me, like the most challenging playing field we ever set foot out onto. Kudos to you just for “hitting the field,” no matter how it ends up going. As regards the Asperger’s diagnosis, it’s an interesting conversation within the community, I find. Many people think that “self diagnosis” is valid in this case, and that if somebody resonates deeply with what they read of the experience, or scores as Aspie on the many online tests that are available, then that’s enough. Others argue that there’s great value in getting a professional diagnosis, as does Michael John Carley in his wonderful book Asperger’s From the Inside Out, as the “doubting the diagnosis” that can come from self-diagnosis can be quite distracting and disempowering. I was moved by Carley’s book to go ahead and get the official diagnosis, take the many tests and inventories, do the deep interviews, etc, even though I’d been working with an autism-experienced therapist for a couple of years. The doubt and wondering were interfering with me. And the result of having the “official diagnosis,” of getting a “second opinion,” a second set of eyes on my situation, has been worth the money it took to get it (partly because the diagnosis included an IQ test, which was also quite surprising). I don’t know what you’ll need for your own journey. I started with self-diagnosis, and did a great deal of online testing and reading, and found great resonance and insight, all of which was tremendously helpful. Then I got a “professional diagnosis,” and all of a sudden I felt “credentialed,” and empowered to speak publicly about my experience. Again, I wish you well on your journey, and look forward to further conversation here. Take care! Tim

Susan V.

says:

Thanks Tim. Last night I took the Aspie Quiz and scored 151 out of 200. Previously I had just done the shorter online test. I’m sort of in shock as, like most people, I thought of autism as only being severely dysfunctional.
But the fact that I’m pushing 60 now and haven’t outgrown so many of the aspie traits is a huge realization for me. Even more than getting an official diagnosis I’m hoping to find a support group in my area. I literally have no one in my life that I could share this with. Ironically one of my sisters is a retired special ed teacher. I’m sure if I tried to talk to her about this she would dismiss it. I went through the same thought process when I was diagnosed with ADD and didn’t tell anyone I knew.
It sure explains so much though, especially my inability to make friends and maintain friendships and intimate relationships. I end up thinking people just don’t like me or think I’m boring but now I’m realizing that I’m lacking many of the social skills necessary.

Timothy Scott Bennett

says:

Yeah, I know that “shock,” that reaction, that resistance to the word “autism.” It was essential, for me, to have Sally to go through it with. One place where some people find support is at Grasp.org, which is Michael John Carley’s group. Though I haven’t used it as a resource, I know there are links there to online and local support groups. I think Cynthia Kim’s work is very helpful, and her website, musingsofanaspie.com is a great resource, and another possible place to find supportive connections. I don’t have enough of a readership on my blog yet, for it to be much of a resource in that regard, but she’s been at it a long time, and has a great deal of interaction. The last thing you need at this point is to have your truth be dismissed by others! Take care, Tim

Sally Erickson

says:

Hi Susan. Your story and situation touches me. I hope you do find a support group. Also please read about Asperger’s strengths! What I have found in my close relationship with Tim is that what he lacks in “social skills” he way makes up for in loyalty, intelligence, open-mindedness, willingness, honesty, and devotion. I’m likewise touched by your honesty. How did you find Tim’s blog, by the way?

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