what’s wrong with me

I have been asking myself this question my whole life. Something has always been just a little off. I haven't known exactly what, but I have known I have to hide it.

If you know me, you have probably noticed.

My whole life I tried to be the way I thought I was supposed to be. I worked to avoid doing things people seemed not to like and repeat what has gone well before. I was mindful of my timing, my expressions, my movements. I endeavored to make my interactions seem and feel natural when in reality they were anything but.

I couldn’t hide it because what was ‘wrong’ was who I was.

I finally have a real answer for what that is.

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I have always had the sense there was something different about the way I was experiencing life. In many ways, my life is a dream, so why am I not happy?

Why do I walk around waiting for the other shoe to drop?

Why am I worried that I have accidentally upset anyone I speak to and they may never talk to me again?

Why do I feel like I'm not having the same human experience that other people are?

Why, almost constantly and to varying degrees, have I wished I wasn’t alive?

It isn't acute or episodic suicidal ideation. I wouldn't kill myself. Instead I have wished I could will myself out of existence, that my soul could open her eyes and drop this life.

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As came back to my consciousness after a 5MEO-DMT ceremony three years ago, I rocked on my living room floor, hugged my knees to my chest and plead to myself "please let go."

I could feel how tightly I had been holding myself.

I had to. I had to keep what was hidden inside in and everything I thought I should be held up on the outside.

I had the distinct sense that I wasn't who I was being, who I thought I was.

So, who was I?

I became even more obsessed with inner excavation in my determination to find out. Since then my personal essays have been variations on a theme - how to clear the noise, the performance, the pre-written checklists of what I was supposed to want and get at the truth of who is actually in there.

I paused the churning wheel of my social life and asked myself what and who actually felt good instead of just keeping up what I had going. I tuned into what my body seemed to be telling me. I became my own staunch defender against the tyrant in my mind who thought it knew who I should and shouldn’t be.

Still, there was more, something I just couldn't get at, a locked box inside of me. I prayed - actually prayed - for a lightning bolt of insight to strike. I prayed to be ready for the truth to reveal itself.

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In August I read a newsletter from author I like who shared that she learned she was autistic.

"That's an overshare,” I thought. “Why would she tell her entire email base that?" I deleted the email and moved on, but my brain looped back. Once. Twice. Mysteriously compelled, I dug her email out of my trash folder and pasted the name of the test she took into my browser, even though I couldn't be and definitely wasn’t autistic.

My score was even higher than hers.

Shame washed over me.

Sure, I wanted to know what was wrong with me, but I didn't want it to be this.

I didn't want anyone to find out.

I wanted to tell everyone.

Finally! Finally, an explanation. I was convinced that I was just a terrible person, so, thank god I wasn't. I wanted to run around and tell the people I loved, the people who loved me and found themselves hurt or frustrated, "look! This! This is why! I’m not evil or awful inside."

Again, I felt ashamed. These social missteps were what people loved me in spite of.

What if they brushed the idea of this discovery off and dismissed me?

What if they agreed, but too enthusiastically?

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Immediately I launched into research and compiled a list. Apparently the single minded focus with which I consume information about a new subject is known as “hyper-focus” on a “special interest.”

My life unfolded in front of me with a new light shown on my personal mysteries. Quirks of my personality, characteristics I have struggled with, tried to change, failed to change, tried to hide and also failed, here they were scattered in bullet points across the internet.

Things you've seen me do that I didn't know were related to Autism:

-Play with my hair

-Ask you to turn down the music or mute/turn off the TV

-Leave a social event early without saying goodbye

-Mention my dislike of showering

-Turn off overhead lighting

-Speak with dry/non-emotive delivery

-Become awkward and quiet in large groups or stick to the sidelines

-Skip make-up, avoid fancy hairstyles, and costume as minimally as possible when required

-Appear to be stand-offish, snobby or unfriendly to cover my processing delay

-Suffer intense or prolonged emotional reactions

-Overshare

-Become profoundly upset when I'm being misunderstood or my character is called into question

-Exit relationships when someone gets to know me well enough to start seeing me unmask, especially if they tease me about what they observe

-Have an overdeveloped sense of justice and not be able to let things slide

-Talk about my new interests ad nauseam with passion and excitement, then abandon them

-Take things literally and struggle with unspoken social cues

-Fail to display empathy in a common or expected way

-Forget to eat or skip meals because I ignored or didn't hear my early body cues or lacked the executive functioning required to shop or cook or even stand up and grab something

-Struggle with indecisiveness

-Not respond appropriately in my outward expression when I'm given gifts or compliments

-Ask a series of logistical questions about events I'm invited to so I can prepare myself for that scenario then become anxious or uptight when plans change unexpectedly

-Bluntly voice facts or observations that others wouldn't comment on or would mention to imply a judgement

-Show different sides of my personality in different settings or with different people

-Have little awareness a comment may be inappropriate or hurt someone's feelings

I had a million explanations for these behaviors ranging from my childhood to my adult trauma, learned and inherited behaviors, individualistic quirks. I never would have thrown them under the umbrella of Autism because I didn’t know they could fall there.

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"Do you have a lot of stress in your life?"

This is a question I've been asked by almost every masseuse. The muscles in my back are so tight I joke that it feels more like a bag of rocks. "No..." I say, eyes moving side to side , searching for instances of the classic offenders.

My job was minimally demanding. I had no partner or children. My relationships were fine.

I wasn't in financial straits.

"No... I can't think of any stress..."

When I drop into my body I feel how tightly I hold myself. I don't want to make any unplanned movement. I have built myself into my own suit of armor, protecting myself from clumsiness, from the quick reflex of waving back at someone who wasn't waving at me, the unintentional jerk of a limb, or nervous tapping of a toe.

I had been told to "loosen up" by friends so I learned how to appear looser without actually letting go.

What would my body do if I wasn't constantly posing and restraining it? Honestly I'm not sure I want to know. I don’t know how I would start to let go if I did.

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When I look back on my childhood in New York I can see what a perfectly imperfect environment that was for me. I have so much compassion for the little girl who was doing her best to make it work.

• I was constantly overstimulated by the sounds, smells, crowds, and unending visual stimuli of the city. The environment alone took an incredible toll on me and my fuse was constantly short, leading to my low frustration threshold and frequent overwhelm. Luckily in New York, rudeness and anger are an acceptable part of the culture, which makes me think overstimulation may be a shared experience.

• My demanding high school with it's high academic standard, large homework load, and expectation of constant extracurricular activities would have been a lot for any teen. I was managing all that on top of managing my dyslexia and the cognitive and energetic toll that 8 hours of focus and masking demanded at school. I don't know how I got through school with the high grades I maintained. By the time I got to college I was so severely burned out that I tried to drop out.

• I never fit into any social group and had few close friends my age, preferring the company of my teachers. The social relationships I did have were fraught with conflict and misunderstandings that I didn't know how to avoid. My natural teenage social missteps were dramatically enhanced by my attempts to graft scripts from my favorite TV dramas onto my interactions, wrongly assuming they were a model that would achieve desirable social results.

• Autistics lack an understanding of hierarchy and don't pay due respect to authority figures simply because of the roll they are in. I was labeled by my parents and some other adults as defiant and disrespectful because I wasn't deferential. I was treated as a 'bad kid' even though compared to my peers I was really very good in every important way.

• Opportunities to unwind and recharge were limited. New York offers little nature and no silence. Spending time at the riding stable on the Upper West Side was a refuge for me. The horses were calming and I loved the repetition of barn chores. With my horse friends my enthusiastic passion was met and equaled instead of ridiculed, but the social dynamics at the barn were always a challenge.

• Like all New York apartments, ours was tight for a family of four. My bedroom was the only reliably safe and quiet space I had so I spent most of my time in there, on both at the insistence of my parents and by choice. I also liked to hang out on the second floor landing in the stairwell of our apartment building, enjoying the privacy, silence, and the smooth, cold cement. I loved going to my grandmother's house. It was quiet. It had large windows that looked out on the Central Park trees over fifth avenue. It was full of books and fancy snacks and adults who loved me.

• As a New York child our free time was spent on city activities, which usually involved consuming. We would dine out, go to movies, go shopping, sometimes go to plays or museums or concerts. My dad would walk us home from school through the park, take us down to the farmers market on Saturdays, or to ride bikes in Riverside Park.

As a New Yorker, native or transplanted, you are indoctrinated to believe that New York is the best possible place to live. The narrative was clear and unyielding. I was lucky to be there. It was an enviable position. The city was amazing and as a native New Yorker I was the purest expression of it. I loved it there. What I was experiencing was raw and real and I loved it.

All the ways my relationship with New York didn’t work were things that needed to be ignored, overridden, or changed about myself. New York was perfect - the problem was me. Having had no other experience I couldn’t connect what was hard for me to the fact that I was a very sensitive person living in one of the world’s largest and busiest cities and it was making me miserable.

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Another skyscraper-sized challenge for me as a child was my mother.

Instead of being the supportive, affirming, loving champion I saw my friends' enjoying in their parents, my mother was my own personal nemesis. In the research I have done diagnosing myself, it seems clear that she was also struggling with characteristics of autism.

Of all the relief this label has offered me, finally understanding my mother has been the greatest gift.

My mother’s behavior towards me, at home, in social settings, inexplainable and inappropriate, falls neatly along the lists of symptoms. Like others have assumed of my excessive bluntness, clumsy comments, or other accidental social blunders committed with such false confidence and grace there seemed to be no other explanation than elaborate, complex, and premeditated cruelty.

That is what I thought she was - inexplicably evil. She was a genius at coming out of left field and saying the most perfectly hurtful thing. It was always out of an interdimensional left field, impossible to predict or guard against. There was never a time I wasn’t in danger until well after her death.

In the years she was working, my mother would come home, let off steam with a few pointed explosions at my brother and I, usually me, then shut herself in her room with a glass of wine to watch hours of TV. I tried to anticipate and avoid missteps that set her off, preemptively completing my chores, clearing out of the living room and hiding in my bedroom doing my homework on my own, afraid to ask her for help. Eventually I realized that her pointed persecution of me wasn't related to what I did or did not do around the house. She would get home and find some fault in what I had or hadn't been doing no matter what. I was her personal punching bag. In order to not be devastated by this I disconnected my self image from the opinions or perceptions of others, specifically and especially hers.

She didn’t know that she was in sensory overload and burnt out from masking.

My poor mother had no idea what was wrong with her.

My entire life she tried and failed to figure it out. She was in therapy. She was in AA. She got diagnosis after diagnosis. She tried harder, made some progress, then inevitably fell off or regressed. She would do her best to be a good employee, friend, parent at school, mother to her children, child to her parents, and yet things would go devastatingly wrong over and over again in ways that I see now were impossible for even her to predict.

The harder she tried the more wrong it would go.

And on top of it there I was, her teenage daughter, waiting and ready to point out all of her flaws.

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If you have ever thought I was controlling, you were right.

In fact, you have no idea how controlling I am.

I don’t just track my body and choreograph how it moves.

I plan out what I’m going to say so I don’t blurt out something weird.

I am constantly scanning my body, checking my posture, my facial expression, imagining how it looks and adjusting as needed to be more appropriate.

If I want to adjust things I determine how much I can do so without standing out or being disruptive.

If I’m uncomfortable, I hold myself still so at least I can look the way I should look even if I’m wanting to run or stretch or leave. Perhaps a fidget will slip out. I’ll preen the ends of my hair or pick at my cuticles as I stay seated like the good girl I have made myself be.

I am constantly and consciously managing everything I do, all that I am.

I’m more controlling than you ever imagined anyone could be.

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Starting at some point in high school I amalgamated an identity for myself from a collection of characters in books, movies and TV shows. I studied their lines, sometimes literally, their movements and behavior. Instead of touching inward and referencing my personal compass, my inner self as I interacted with others I would reference this database. It was amazing how quickly I could respond. I'll banter with someone, be charming, flirtatious, contritious, deferential, and inquisitive all at the pace of a New Yorker. It seemed like it was really me.

I felt like a tennis match was happening somewhere on the most superficial layer of my consciousness while my true self lingered below, both wanting to be seen and being afraid of being seen. It was as if I was jingling a set of keys in front of the face of anyone I met. "Don't look at the girl behind the curtain. Look at the shiny thing over here." Most people were not hard to trick into thinking I was whoever I assessed would delight, challenge or impress them. I realized that the quick paced, witty, sassy self New Yorker I was playing wasn't really me, but it was the game I was used to playing and seemed to work well enough.

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I built my mask very consciously, but at the time I didn’t know that was what I was doing.

I didn't know what "right" was when it came to family, adults, interactions or relationships, but I was pretty sure that it wasn't happening in my home. Neither of my parents seemed like a model of integrity, joy, or success so I couldn’t default to their model. I did something few preteens do and I chose values to live by. What did I care about? Who did I want to be? How did I want to show up in the world?

I thought about adults I admired. I asked myself what I liked about them, how they made me feel, how they navigated through life. I chose teachers, friends' parents, authors, and characters in books or movies to emulate. I plucked characteristics, catch phrases, facial expressions, even quotes and gestures.

These were my models. Not just role models I aspired to be like, but people I carefully and intentionally copied. My "self" was an artful combination of features I admired in others, my own special blend.

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As I madly dashed through my memory to figure out what about my behavior is the result of autism, I realized there is an easy indication - the things people have teased me about.

If you have enjoyed my self depreciating humor, please know I'm only trying to beat you to the punch. Being aware of my oddities and pointing them out first makes any commentary from you a pile on instead of an original insight.

I do need a sense of humor to be me.

I'm confounded by myself as well as the behavior of others.

I take things too literally.

I think the world would be better if it was consistently anywhere from just a little bit to completely different. My sensitivities and preferences are endless and unrelenting.

I need to find me funny and I'm lucky to have friends who can laugh off what is otherwise bizarre, annoying, or inconvenient.

Part of why it's been so hard to let people know me, to maintain close friendships or romantic relationships is that the closer someone gets to me the more comfortable they feel teasing me about things I do or am that are "different." At times it is playful and with love, a celebration of my uniqueness or an appreciation for the underlying social commentary about what is "normal."

Often the teasing is criticism or a request to change under the guise of a joking tone - a disparity that confounded me when what was delivered with a smile was received as a punch in the gut. When at times I would express my hurt feelings or displeasure at being the subject of repeated or extended jousting, the tables were turned on me again with a phrase like, "can't you take a joke?"

This, I have learned in my research, is what is called bullying.

Being teased and bullied has been a guiding force in my life, the rudder that has steered me away from my authentic behaviors and taught me where I need to mask. This isn't all bad. Teasing is one of the lighter ways we maintain social order and norms. It gently lets someone know they have made a misstep without threatening their sense of safety or belongingness.

I'm not even sure what "authentic" would mean for me. My true self, the self that at any stage in my life the people around me have repeatedly, methodically and consistently taught me not to be by making fun of me, is long buried.

Is it worth unearthing when I'd be exposing the part of myself that is tender and defenseless as a newborn to scrutiny? What if access to that self goes hand and hand with opening the floodgates of my bluntness, the surge I constantly keep at bay - would it be worth it? Imagining hurting my loved ones or strangers, the impact the loss or damage of those relationships would have on me, it seems -I share with a gulp- I should just stay as I am, however masked it may be.

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Relationships of all kinds have been challenging. I don't know the unspoken relational code others seem to speak fluently and intuitively. Misunderstandings abound on both sides. Being to the point, uninterested in small talk, and utterly bewildered why others don't share my singular commitment to honesty has further strained my interactions. Unless I stay steadily on script, I lack social grace and pay a social price.

My greatest fear and most common experience is that close friends and partners will interpret my words or actions through a veil of malintent - just as I used to do to my mother. More than once I have illuminated for people who bring up a misunderstanding that for me to have meant that in the hurtful way they took whatever I said would mean that my motivations in saying it were explicitly cruel and intended to cause harm. If they really think that that was my intention, I would encourage them to exit this relationship because they should not be friends with anyone who they think would say something with the specific goal of hurting them. If that is what they truly think I was doing then we probably shouldn't be friends.

This is not to say I brush off anyone's feelings or experiences. I have become an eager and heartfelt apologizer. I can see that these comments were being interpreted in a neurotypical way and someone with an innate nuanced understanding of interaction and communication probably wouldn't have said that because they would have been able to anticipate how it could be perceived in a hurtful way. While I truly care deeply about the people in my life and don't want to cause anyone harm, I simply cannot simultaneously filter everything I say through every possible interpretation and interact in real time.

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I always wanted to be myself. In fact, I have talked a lot about it. It’s a huge part of my unique brand, but was I really me? In hindsight I can see how I became a champion of authenticity as a flag I could fly to excuse or explain how weird I was.

Even as I was sharing myself as fully and completely as I could I felt how there was a false bottom to the self I was claiming to completely exvacate and reveal. I wanted to be myself, but only as much me as I could be while still operating in my set framework. Instead of going inward, I responded from a checklist of my likes and dislikes. I was the spokesperson for a character I didn’t know I was playing. I didn’t need to check in with my self because I would sit and decide who I was in terms of how I would or should feel about things, how I might react to this or that. It was all orchestrated and scripted. I was me as much as a character I wrote could be.

I thought this was how me’s were made.

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The problems would come when what I decided should feel good for me often didn’t.

The boyfriend I wanted and got was a prize, but I felt terrible and anxious around him.

The friends I thought were so beautiful and cool weren’t nice to me or didn’t share my interests. Sometimes we grew apart and weren’t ready to admit it.

My business was busy and bringing in record profits, but I was burnt out and salty instead of invigorated or proud.

I had gotten the things I wanted, or what I was supposed to want and I wasn’t happy. I thought this meant that something was wrong with me. I never considered that maybe I didn’t want what I thought I wanted… Instead of being a barrier to my happiness, my response was giving me important feedback about who I was.

As much as I would try to make certain relationships or situations work for me, my body would always break down. I couldn’t maintain the self that wanted, got and was happy to have these things. I was stressed out from pretending. My victories felt hollow. I was anxious and felt trapped in worlds I had prayed for access to. Finally I surrendered. Instead of only listening to my body when it threw up the white flag, tapped out or broke down, I decided that I might as well let it steer.

After I intentionally set out to try and listen to my body, it took a few years for me to learn to ask myself how I felt, then slow down and tune in. To pause was to rebel against my singular goal: to deliver the right response, in the right timing with the right tone and expression and to make it as close to the truth as I understood it in that split second window. It was easier to operate off a preset check list of preferences than to go inside and find out how I felt.

I practiced becoming comfortable in the silence I needed before answering someone's question. If the answer didn't come quickly I had prepared phrases for that, too.

"I'm not sure."

"I need to think about it."

"Can I get back to you?"

"I need to sit with this for a few days and then I'll let you know."

I remember my therapist who coached me through this language. Because I prioritized being socially appropriate over being authentic it never occurred to me to break social convention by not giving someone an answer in time with the beat of conversation. I was so concerned with appearing to be normal that it didn't occur to me to look inward and be whoever I was.

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Novelty is hard for me.

When I don’t know the rules of any new group, space or game I can’t ‘jump in’ the way others do because I can’t be trusted to learn on the fly. I need to be able to sit on the side and observe before I can comfortably engage.

I talked to my therapist about my strategy in acclimating to new environments. My first time anywhere I'm quiet, reserved, and rigid. I shrink into the background, watching what everyone else is doing, the flow of the space, the timing of the event. I would rather seem standoffish than jump in before I know what's going on and risk accidentally making a social or literal misstep. I have expressed envy at those who can jump in two footed, whole hearted, unafraid to learn on the go. Clearly they don't have a processing delay and trust in their bodily control.

"Lean in. Don't be afraid of making a mistake. If you make one, just move on." I tell him I'm happy observing until I feel comfortable, then I decide when I'm ready to be noticed.

"You don't blend in," he said, bursting my bubble.

"You know that, right?"

I did not.

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I'm a voracious consumer of rules, systems, relationship archetypes, conversational scripts. It’s a survival strategy. I'm gathering skills. I want to know that I know how to do it, but after that I move on. I have no interest in enjoying or enhancing my proficiency. I'm driven by an unseen force, a duty, a desperation.

I am a voracious consumer of the human experience, not for love of it all, but as feathers in my cap, checks I add next to boxes, another activity or role I put in the "known" column. I have expanded my "yes" list, the things I can easily join in on because they are familiar to me.

A friend illuminated my tendency to pick things up, people, hobbies, enjoy them for a time, or as she said, bat them around like a cat, then put them down, dizzy. "Not in a mean way. Just in an 'Allegra' way." This observation stung, but she was right. Passion embues a new endeavor, but as novelty fades and my comprehension grows, my interest wanes. I put it down as quickly as I picked it up, quite done with it now that I have gotten the gist.

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I love being in love - especially the first rush of romance. Round after round in love, partner after partner, it became clear to me that the feeling that arose and faded wasn't for the other person, but for the version of me that that initial chemistry brought out.

For a brief time I am my best self. I am light and free, unworried and only naturally inhibited. In this rare circumstance and for a short window, I could be me. My match, whoever they may be, was temporarily inclined to oversight, seeing what I revealed through rose tinted glasses.

I let myself flow, sharing my silliness, making up games, reciting poetry and being vulnerable about what is difficult in life. I share my history, my spirituality, my philosophy, the gems I have brought back from the dark depths so long ago that they are perfectly polished.

As my new special interest, my focus is almost entirely on them. I ask questions and listen to the answers. I want to climb into their skin, to learn everything, to piece their life together, place it in the context of family, geography, memorize and organize their history. I become an expert in them and give them a hand in polishing their own diamonds, even ones they have never brought to light, perhaps for lack of so dutiful and persistent an excavator.

I revel in this phase of relating so deeply perhaps because it’s always been temporary. I want to squeeze as much as I can in and out of it before the bubble bursts. For a little while I am me, fully me, glorious, tender, and bright as the sun me.

Something always changes, for either or both of us, and there is always a reason to retract.

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"You pick up the personalities of the people you date," one of my oldest friends reflected to me. My college boyfriend introduced me to nature and camping and swimming in mountain springs. When I dated the hippie I bought barefoot shoes, made kombucha, started seeing jam bands and went to Burning Man. The frenchman led me to French lessons, habitual pot smoking, and mushroom hunting. The soldier took me to military balls and two star chain buffets. I loved it. It was all new.

She didn't see these men join me at the barn to help with my horse chores or take a riding lesson, accompany me on hikes with or without my pack of dogs or have whiskey with my houligan friends at our favorite bar. There was some balance to it, but she was right in her observation.

Best friends or men I dated became my special interest, along with their interests. It never occurred to me to branch out from horseback riding. I didn't have the energy to figure out what I wanted to try or take on the logistics of figuring out how to get started. I was nervous to try a new sport with with a group of strangers, in constant guard of demonstrating my lack of coordination. Plus strangers who all new the culture of a hobby that was new to me meant social dynamics to navigate.

These men provided an easy way in, a safe foray into a new hobby. They were a hand to hold it what felt like a small expansion of my comfort zone, one I could easily write off as being a good partner. I was in worlds I never would have entered and I had a devoted and dedicated guide. I wasn’t abandoning myself, I was taking advantage of an opportunity.

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"I feel like I can't talk," I stammered standing half in and half out of his car, pulled over on the side of Route 1. On one of the most beautiful roads in the country I practically vomited up my confession. For most of our trip I was sitting behind my smile and nods, which remained on cue, with tears in my eyes. Inside my inner dialogue raged, but I was boxed in relationally and conversationally. I didn't want to catch someone like prey and pin them down while I poured out my heart. This person who was so dear to me, there was so much I wanted to tell him, for him to know.

The longer I sat there smiling and nodding, playing the part of "normal woman," "polite and engaged," "fully present and not full to the brim of emotions, confessions, an inner self at once yearning for a witness and terrified of one," the larger the chasm grew between myself and my facade. It was tearing me apart. I was trapped behind my own mask beside someone who knew me, but also didn't know me, who wanted to know me, but also seemed to bristle at the glimpses of my unedited self.

I couldn't be myself because I didn't want to risk hurting him or being misunderstood.

My true self was so contorted and in so much suffering that I could no longer effectively mask.

I was so stuck I could barely breathe.

There was no way in and no way out.

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I was again standing in the wreckage of yet another romantic effort. I had met someone who at first made me feel free in their abundance of affection, but that changed in time, as it always did.

The holes they filled in with their own romantic narrative or notions became quicksand for us both to get stuck in once the reality of who I was seeped in. The blunders they first brushed aside or graced with benefit of the doubt became habitual and undeniably a part of who I was and how our interactions would be.

My observations, said aloud without judgement, were given a subtext I didn't intend and interpreted as insults or criticisms.

The accommodations I requested that I couldn't give an explanation for were interpreted as me being controlling, demanding, fussy, needing to have things my way.

My endless naval gazing and self analysis, the labor of any thorough and dedicated masker, was interpreted as self centeredness.

Honest to a fault, loyal, earnest, I fell victim to their projections and was treated as a liar.

I couldn't explain why any of this was, it was just me being me. Perhaps it was the fact that I rushed into relationships with men who seemed to see beyond my veil and were quite taken with me, hungry to get to know me. I was hopeful that someone could see me and love me.

The more I revealed the more repulsed and disappointed my initially lovesick partners seemed to be.

As I write that I shake my head, letting go, at least attempting to, of the sting and the shame. Why be known and unloved when I can be illusive, a golden outline someone could project their fantasy into? That has seemed like a safer bet.

*            *            *            *            *            *

Of course I am being too hard on myself.

Years ago I had the realization that my shadow, the part of myself I tirelessly hid, was actually quite lovely. A close friend once peered at me over the rim of a beer or whiskey glass and offered with a light jab, "I like you better when you're drunk."

I was offended, but I knew exactly what he meant.

The part of me that kept guard, my constant jailer, the veil I hung to obscure what was unknown, unedited, wasn't very pleasant. She was elegant, but cold, calculated and reserved, quick witted, but sharp and mean.

When I was drunk I dropped all of that. I was sweet, silly, soft, spontaneous. Naturally, I hated it. I didn't like that I couldn't keep the mask up if I was inebriated or that I lost some hard won motor control. Instead of leaning into the looseness, drinking started making me even more uptight.

I have always been cautious with substances, reluctant to lose control, afraid of what might come out. Even with my friends who were users of substances and more inclined to hold space for whatever arose under such conditions I was relentlessly guarded. One night I got drunk, something that happened so rarely it easily stands out. The unedited self that unfurled itself at this intimate house party introduced friend after friend to friends who knew each other well with the preface "this  is my favorite person" then went on to extoll their virtues. I also vaguely remember kissing at least two people, a behavior I would never wittingly allow and, in fact, am excessively cautious to avoid.

“Is this who I am when I’m drunk?” I wondered.

I was loving and lovely.

*            *            *            *            *            *

I like things to be a certain way. I always have. The words used to describe people like this are fussy, particular, controlling, and difficult so that’s what I thought I was.

Life has been a balancing act of how well or poorly I can invisibly accommodate my mysterious and complex needs in any given relationship or situation. My greatest successes as an adult are the elegant ways I have found to hide or disguise my discomfort and the adjustments required to ease them.

When I invite people over to my house I can control the lighting, sound, and temperature with ease and grace. I don’t need to interrupt the conversation to ask permission or have anyone else make an adjustment for my sake.

I offer to drive so I can leave the moment I choose to and I’m always in control of the music, volume, windows and AC. I try to track signs my co-pilot or passengers may be uncomfortable and need their own adjustment because I know people can’t be trusted to make a direct request even when clearly invited.

I invite friends to hang out one-on-one at one of our houses. I prefer to go for a walk or hike so I don't need to compete with loud music to hear or be heard or awkwardly bungle my attempt at non-verbal communications in large groups as they happily and naturally flit about concert venue, connecting and separating.

Luckily I am okay with being gently demanding. It’s a part of who I am.

People are usually kind. Some say that they are inspired by it, which means that it’s unusual and outside of the norm. People aren’t inspired by things everyone does. I take the compliment/feedback sandwich. We all should feel safe asking for what we need to be comfortable.

After requesting someone put music on then reaching over and turning down the volume or indulging someone by watching a few videos on there phone then telling them I had seen enough for now, but thanks for sharing, I had a friend tell me "you are very good at managing your experience." I hadn't realized that's what I had been doing.

What looked to those around me like expressing a preference was my calm and quiet lifelong campaign not to make the present moment more enjoyable, but just to stay afloat.

*            *            *            *            *            *

I don't like showering.

You probably know this about me. I joke about it. Well, I tell people about it in a joking manner. By extension I don't like exercising, sweating, or getting dirty because those all require a shower afterwards.

I don’t like getting wet. I don’t always like being wet, but usually I get used to it. Then once I’m used to it I have to get out and get dry. I don't like the changes in temperature and texture.

I get tired just thinking through the multistep process. It often ends up being even more steps because I try to cram all my shower related hygiene tasks into the shower I take once every five days or so to wash my hair. It becomes an exhaustive feat of executive functioning.

I don't even like washing my hands. I can't stand washing dishes, my childhood chore that I completed nightly in anguish and under duress. Pleading with me to shower or berating me for not doing my chores, my parents found me willful, defiant, disobedient, obstinate. My choice was between being agreeable and uncomfortable or advocating for myself and being in trouble. I chose the latter.

This happened so often and with such regularity it became an identity.

Allegra is particular.

Allegra is difficult.

Allegra is stubborn.

Allegra was sharing her inner experience. Allegra was trying to advocate for herself. Allegra was telling you something was wrong. Allegra was trying to navigate the chasm between who she was and who she was expected to be.

*            *            *            *            *            *

Autism explains much of what I was scolded for as a child.

Day dreaming during class. Resistance to uncomfortable uniforms or costumes, any clothing that fit too tight, had an errant tag, was made of scratchy material. My persistent and overwhelming boredom to which my father would chide "only boring people are boring." My preference for sitting on the floor instead of on chairs, especially at a desk or dining table. My habit of hiding in my closet when I was upset, enjoying the dark, the quiet, the closed in feeling with the door shut and my clothes pressing against me. The overwhelming emotions that caused me to hit after my peers had grown out of it. My spacing out, fidgeting, tantrums.

I could tell my parents felt I was making life harder for them, but really I was expressing that it was harder for me.

*            *            *            *            *            *

In July I saw a friend and made a confession.

For as long as I can remember I have been observing myself. Not just internally paying attention, but I watch myself from the third person. As if I'm watching a movie, I see myself nod, turn my head, lean back, sit and stand.

Sometimes before I get up I'll even make a quick mental plan of how I will move my limbs, in what order and with what pressure. It's such a habit I don't notice myself doing it. My movements, the way I adjust my hair, my facial expressions, the quick glance I just gave you, it's all premeditated or pulled from a stock of movements I've practiced.

She attributed it to the male gaze, that in our culture we are preprogramed to perform for men. Little girls are taught to be self conscious, as in aware of themselves, aware of how what they are doing is being perceived.

It could be part of it. Sexual interest is part of my gauge of success. If I’m found to be desirable that means I’m blending in and standing out in the right ways. I knew there was more to it, though. What I was trying to find words to describe was “masking.”

*            *            *            *            *            *

I can remember the first time that I didn't plaster an expression on my face. In high school my friend took me to a poetry reading that happened to be in a classroom in my nursery school on the upper east side. I remember sitting in that classroom, listening to the words being spoken, but more than just listening. I let my consciousness drift and immersed myself in it. I remember how good it felt to  to be so present, so deep inside of myself that I let go of the surface and released into the experience.

"Are you okay?"

Her words roused me from a trance. "Yeah, I'm great. I'm really enjoying it."

"I looked over at you and thought something was wrong. You looked angry or bored."

"No, no. I'm fine. Great."

I settled back into my seat and focused on the artist, awash with the private shame of that unintentional and well meaning slap on the wrist. I had momentarily released into life and I made a misstep. I let my mask slip, literally. I made a note to be careful not to do that again.

To this day I have made a concerted effort to never allow myself to be so fully present, to enjoy something so deeply that I let my facial expression drop. At concerts, at Burning Man, on psychedelics, watching movies, I have not let myself get lost in anything. I have kept one foot firmly anchored so I won't drop the ball on my constant job of pretending to be a normal person.

*            *            *            *            *            *

When I made my case for Autism to my therapist in a sessions a few weeks ago he was open, but the lightning didn't strike the same way for him as it did for me.

"You have always been so expressive."

His reflection was a testament to the depth and consistency of my performance. I told him how I used to watch TV and reenact the scenes, mimicking the facial expressions. Shows like 90210 and Melrose Place lay the foundation for my impression of human interaction, leading to exaggeratedly dramatic groping towards adulthood in my early teens.

I am emotional, which is actually another trait of autism, to suffer intense or prolonged emotional reactions. I am extremely verbal, perhaps as a coping mechanism because I knew how much ground I had to make up.

I wondered in six years of sessions if I had ever really let my mask down with him. Was it all a waste? Did he even know me? Did I?

*            *            *            *            *            *

At around the age of nine my mother signed me up for class after class trying to help me find a hobby.

I quit all of them.

I probably couldn't have said why I quit, either it wasn’t fun or I wasn’t good at it. Some I never picked up again after the class ended, some I walked out on partway through, likely in an attempt to hide my shortcomings with executive functioning, fine motor skills or social skills. I knew I wasn't having the same experience as everyone else.

"Allegra the quitter" became a family joke. I internalized that as part of who I was and I feel sadness now for that little girl. It was only the beginning of people misattributing my actions and motivations, often in the least flattering way.

Horseback riding was the only hobby I stuck with. I didn't need the coordination or social skills required for soccer or gymnastics. It's no accident that horseback riding involves holding yourself very still. It’s a practice of controlling or restricting your body. These were skills I had probably already perfected by that age as the adults around me kindly and with the best of intentions taught me to be socially appropriate in my movements. I excelled in understanding horses’ body language because of my aptitude with pattern recognition. The social skills involved were limited and secondary. During lessons it was just me and the horse.

I always thought my lifelong and singular interest in horseback riding a passion of my soul, but it could have been a special interest. That was my thing and once I found it I found no reason to find another. I remember wearing my riding clothes to school in 6th grade and learning that was a mistake. I talked about horses with anyone who would listen until I learned that was a mistake, too. The solution was to be friends with people who were also horse obsessed, so my social world shifted away from school and to the barn, where I spent almost every afternoon after school from 6th to 9th grade.

Horses were my safe space. I could be myself. I enjoyed the routines of grooming and cleaning tack, the attention to detail I could apply. I found them calming and their anxiety to be a very valid excuse to calm myself. I loved the structure of the sport and the wildness of the horses. In this world, I had a place... Until I didn’t

*            *            *            *            *            *

I was exceptionally friendly and outgoing as a child, but as early as I can remember my social relationships were fraught.

If you are reading this you probably know me, and if you know me you may know what I'm talking about, perhaps better than I do. I have always felt that everyone else got a rule book I didn't get. (If you hear someone say this, as I have several times in my life, let it raise your autism antennae. The rule book is a Neurotypical brain. They likely don't know about themselves what I never did.) There seemed to be a flow, an ease, an intuitiveness with which others engage with each other while I have experienced social interactions to be a strategic guessing game, like battleship. I never know what comment or action will endear me to anyone, incite uproarious laughter, miss the mark or strike devastation. Only someone's honest feedback, often a scarce resource, reveals which occurred.

I wondered what was wrong with myself the way I wondered what was wrong with my mother. I tried so hard, and yet continuously failed in my relationships. It seemed the harder I tried the more poorly things would go. Over the years I shifted my strategy from wanting to be a person who could be friends with someone I thought was cool or be accepted by certain groups. Rather I would seek to be myself and let my steady dedication to holding those coordinates dictate who flowed into or out of my life.

Even now I hold my friendships with a wide open palm. All it would take was one accidental sentence to drive my oldest friend away - and they may never tell me what happened or ask what I meant. They may just not feel like dealing with my social stumbles or blunt observations anymore and one day decide they are done.

I’m always ready for anyone I love to fade out of my life and disappear on the horizon.

Is it hard to live this way?

Yes.

But what choice do I have? I have tried to think though everything I say an imagine what is going on for that person and how they might take it and what I could say instead where I would still convey what I mean, but it a way that is careful, kind and considerate. It takes too long and is too tiring.

I have tried to emphasize my lesser qualities early in my relating so they are a surprise later on and no one feels tricked or blindsided when I inevitably say something clumsy.

I have asked people if anything is wrong, or what is wrong or asked them to tell me if anything ever is wrong and learned that this is not something most people are capable or interested in doing. I have also done harm by trying to push someone for the truth when it is offered.

*            *            *            *            *            *

Being a literal person, for most of my life I wrongfully assumed others were similarly inclined. I said what I meant and took more than my share of years to realize I may be the only one doing that.

In my dealings with people, particularly in new friendships or when someone doesn’t want to say something you may not like, like “I would prefer if we talked less or never,” they are less than forthcoming.

When someone’s words and actions don’t match it opens a nightmarish chasm inside of me. What to believe? The words they are telling me with an earnest nod or the feeling in my body, the whispers of my intuition, the evidence of my action. Their words tell me it’s all in my head while energetically they are packing their bags and heading out the door.

Historically, my system has fritzed. I will spin in my head for hours, days, weeks compiling their direct and indirect communications and comparing them. It took me years longer than my peers to learn to trust myself over anyone else, to trust my intuition no matter what the person was saying. Whether they stay or go, the relationship that would be truly damaged was the one I had with myself.

*            *            *            *            *            *

This diagnosis has been a victory for me.

It’s turned a light on in a dark room that I have been groping around my whole life.

In my executive functioning struggles I thought I was a bad adult.

In my social struggles I thought I was a low key evil person.

In my masking I felt in authentic.

In my sensory sensitivities I felt fussy and difficult.

The umbrella of autism has shielded me from criticism, mostly from myself. There is a reason, an explanation, a cause. There isn’t a problem with my personality, its just the way my nervous system works.

I was embarrassed for anyone to know, but now I’m proud. Look what I have accomplished in the neurotypical world. Imagine what I could have done if I wasn’t masking or trying to be accepted or desperately trying to figure out what was wrong with me?

Combing through books and lists and memes and Facebook groups has been freeing. There are others like me. Some are married. Some have written books. Some have happy lives and work they love and children. Some have it much worse than me.

From here, let me speak freely.

May I ask for what I want and need.

May I be who I am.

May I normalize autism for hot girls, functional adults, animal people and anyone who has felt like they never quite fit.

If your goal isn’t to be “normal” then being different doesn’t feel like a disability; it’s a super power.