Tag: aspergers

This Situation is Awkward, and I Can’t Stand Being In It

Paul Fidalgo

I don’t know how to react to it, and I’m worried that I may not feel enough at the time to make the right sorts of expressions on my face. How am I supposed to look? Am I supposed to tear up? Eugh. The situation is awkward, and I can’t stand being in it.

This is the nearly daily experience of having Asperger’s syndrome, which I was diagnosed with this past August at the age of 38. Shortly after finding out, I read a book called Asperger’s on the Inside by Michelle Vines, a woman who around the same age discovered that the difficulties she had wrestled with her whole life were also attributable to Asperger’s. A friend of mine recommended her as a potential source for perspective after she was a guest on my organization’s podcast Point of Inquiry, and I must say, so many of Vines’ experiences and challenges mirror my own.

Not all, of course. On the whole, I’d say Vines is more interested in assertively establishing friendships and social groups than I am. In her efforts to do so, yes, there are some truly eye-opening similarities between us, but I, so often being burned by the social world, have opted out. She took a different approach, seeing her social struggles as a problem to solve, a puzzle. I wish I had more of an attitude like that.

Rather than go into a deep review of her book, which as you can imagine I mostly enjoyed (though I thought some of the attempts at humor were a little forced), I’d simply highlight some passages that were meaningful to me and reflect on them. This isn’t by any means exhaustive, but a selection of highlights that I felt I had something to say about.

On Aspie emotions:

Another example [of the challenges Aspies face] is the intense difficulties we Aspies can have with emotional regulation, which I’ve experienced firsthand. Emotional regulation is a technical term I’ve seen in online articles—sorry to feed you technobabble. In simple terms, it means that when we feel an extreme emotion, such as sadness, we can stay in that emotionally extreme state for a long time with little ability to make the feelings go away.

This is definitely true for me. Often this manifests just as you’d expect; as panic, intense anxiety, or overwhelming depression (or all of the above).

Sometimes it expresses itself far more deeply within me, which is often interpreted as my holding something resembling a grudge, “dwelling,” or rudely closing off entirely. But the reality is that sometimes the feelings are so powerful or painful, the cognitive effort required to just stay afloat means I have to shut off everything external, and present a kind of low, blank disposition toward others. It’s almost as though I’m booting into “safe mode” so I can devote all my processing power to working through my overwhelming feelings. I’m sure it looks weird.

On appearing normal:

So, as you may have guessed, I, like many Aspies, was not born with an interest in fashion and clothing, or at least it wasn’t there when I was young. In my childhood and early teen years, I remember being teased occasionally on free dress days for wearing the odd daggy[19] thing my mum bought me. No one told me that you don’t tuck your T-shirt into your jeans! What’s wrong with black shoes and white trousers? Or the fluorescent-pink parachute tracksuit that my mum got me for my birthday?

Oh how I wished I’d had some guidance on this kind of basic social blending knowledge, just an early seed of understanding that other people would care so goddamn much about this kind of thing, and that in order to get through the day with one obstacle fewer, it’d be wise to just check these boxes.

But no one told me. No one told me what to wear, and I didn’t care in the least, and was in fact barely aware of what I was wearing, so people made fun of my clothes. No one told me what to do with one’s hair, so it got too long and out of control, and people made fun of my hair. In southern New Jersey – which is largely populated by olive-skinned, beach-loving people of Italian descent – having a tan was considered table stakes for presentability. But I abhorred the sun, the heat, and the overall beach culture, and my genes had given me extremely pale skin that burns very easily, so I was made fun of for that all the time as well.

Also, I’m rather short, but I guess there was nothing I could do about that, though my grandmother used to tell me I failed to become tall because I refused to hang upside-down by my knees on the jungle gym. So I blamed myself for being short, too.

On communicating one’s challenges:

I started going through possible ways she and my father-in-law could respond [to my difficulties with people]. Was I going to get a talk on how I was “viewing everything wrong” or how I “need to change X and just get in there and do Y and stop overthinking it”? I guess I expect these sorts of comments, because they’re the usual reaction I get from people when I make little hints that something might be hard for me. People so often downplay my issues. “Everyone else deals with Z, so you should be fine dealing with Z too.” “Nobody likes working, but we all do it.” So that’s what I waited to hear.

Asperger’s or not, this is a common refrain whenever I’ve discussed my difficulties in school, in jobs, or anywhere else. “Everyone feels that way sometimes.” The implication is, of course, that since everyone else deals with it, and yet here I am particularly aggrieved by it, there’s something wrong with me, I’m especially weak or lazy or overly sensitive for no good reason. I’m having trouble, and it’s my own fault for being effected by it.

But no, everyone doesn’t feel like this. Not like I do.

It’s interesting that I made the automatic assumption that I need to debate to justify my views and people won’t naturally respect my opinions and feelings. Being me and explaining myself has typically been so exasperating.

Preach. This is a big reason why I think I overshare on my blog and on Twitter; it’s where I can, at my own speed, work through my thoughts and feelings and communicate in far more precise way. This isn’t to say that it’s always successful. But it’s better than most other means of communicating for me.

On processing information:

I am astoundingly bad with directions. I have just the worst time navigating through and orienting myself in space. This not only applies to things like how to drive from one location to another, but to things like depth perception, where parallel parking induces sweats, or playing video games (especially first-person perspective games) where I am constantly confused about my location in relation to everything else going on.

And when directions are explained to me verbally, my brain simply can’t process them. I try, I try very hard. I understand the meaning of the words being said to me, but it’s almost as though my brain immediately garbles the words so that as a whole, they are just gibberish. Even just being given a short list of basic instructions or tasks is a big mental load for me, and I have to concentrate intensely, repeat things out loud, and almost rehearse the actions in my head to be sure they actually make sense to me. Imagine how frustrating that is for my wife, who before this Asperger’s business couldn’t help but assume I just wasn’t listening.

Here’s Vines on this topic:

Sometimes, we just can’t function with so much sensory and verbal input and real-time speed. Or if the topic is not of interest, it may be hard for us to keep our focus on it in the face of other input. And I particularly wanted to bring it up in this chapter because, for such a long time, I really thought it was some sort of memory glitch that I had, and I used to kick myself for how bad I was at grasping and remembering the little details that people would tell me about themselves. I must be selfish, right? To never be able to remember the details of other people’s lives? Everyone else cares enough about other people to remember that stuff. What was wrong with me? It took me a long time to figure that one out—and a lot of guilt, I might add. So, when does this so-called memory issue affect me? Well, unfortunately, I can be pretty bad with directions.

Yep. And I’m also the same with details of others’ lives. I care about other people, of course, but I also frankly suffer from an acute lack of curiosity about those details. So they never, ever stick.

On being outdoors:

How many times have people said to me, “It’s a beautiful sunny day,” or, “I hope the sun will be out tomorrow,” and I’ve privately thought, “I really hope not! I hope for a pleasant, overcast day. Please give me miserable weather! The kind that makes me relax and feel at peace.” I know that other people love frolicking out in the sun and enjoying the brightness of summer, but for me, having that direct sun on me drains my energy and has always made me, subconsciously, that little bit tenser.

Yes, yes, yes, yes, yes. See my essay on the seasons from a couple of years ago, long before I knew anything about my Asperger’s.

On coping in the workplace:

I’ve had some jobs I’ve deeply, deeply hated. I know, everyone has. But while these jobs caused me unspeakable anxiety, stress, and depression, I’ve often found that I couldn’t communicate to others why I was so unhappy. When asked, “What didn’t you like about your job?” I’d find myself almost inventing reasons, or exaggerating small grievances, because I couldn’t find a way to express what was really wrong. Here’s a window into that from Vines’ own work experiences:

Within a month of starting, I began to dread going to work. On the train heading in, I would have dreams about the train crashing and sending me to hospital or the city being bombed (preferably overnight while empty of people!). I became depressed and numb Monday to Friday and spent most of Sunday crying, feeling ill because I had to go to work again the next day. I was in no way “okay.”

This all rings very true. In face, the Sunday evening stress sessions became so common that my wife gave them a name: The SNAS (pronounced “snazz”): Sunday Night Anxiety Show.

When I mentioned it to people, I frequently got nonchalant replies such as, “Yeah, nobody likes working, but we all have to do it.” So after a while, I learnt to stop complaining. At the time, I had no idea that I had Asperger’s. And while I always had the sense that it must be worse for me than for other people, I couldn’t justify that feeling. …

Every place I worked, I had an overwhelming desire to get out of there. I had trouble focusing on the work and interacting with people at the same time. I would feel frustrated or angry inside and often felt like snapping at people (although I didn’t). I dreaded having to do tasks that involved dealing with unfamiliar people. It exhausted me.

Take special note of that last thought, about dealing with unfamiliar people, and then consider that I have spent most of my post-theatre career as a PR director. Yeah, great move, right?

The paragraph continues:

I disliked having to figure out how to do new things. Most of the time, I was given new things constantly, and I really had to force myself to start them. I had trouble remembering verbal instructions and needed to write things down. … In hindsight, perhaps I didn’t do and say the right things to project the best image of myself and promote myself to others. I needed to do things my way and plan my own time. Being micromanaged by others was too stressful. I felt sick and started to hate going to work. All I could conclude was that the common factor was me.

There is a terrible fear I have of being scrutinized by coworkers or bosses. Like Vines, I want them to trust I will get the job done, but I can’t bear to have my methods or practices judged. Why? Because I always assume I’m doing it wrong, getting away with something.

Dr. Loveland, who diagnosed me, explained that these workplace experiences I describe weren’t uncommon for people with Asperger’s and that she’d heard stories like mine before. She explained to me that that “sick” feeling I talked of was the result of bottling up frustration and anxiety all day, every day. Built up over time, I suppose it manifests physiologically, causing me stomach upset, low weight, and a general feeling of being unwell.

And this is why I spent my aforementioned post-theatre career in a state of sub-optimal health, to say the least. It got so bad when I worked for the 2008 Hillary Clinton presidential campaign, with the 15-hour days of intense stress, scrutiny, and pressure while packed in a giant room with people (many of whom were themselves very intense), I fell apart. It resulted in a trip to the emergency room, a scare that I might have brain cancer (I didn’t), neurological problems that manifested in my limbs and fingers, and a full-body muscle spasm or tic that I have to this day.

Had I known I had Asperger’s then, I never would have taken that job. Or I would have at least found another way to do it.

On talking to people:

I don’t usually want to, unless I have a specific reason to be curious about them, or I have some kind of investment in them, like a close friend or family member. So I don’t talk a lot around people I don’t know well, unless of course I’m the only one there, or I feel there’s an expectation, and then I blather like an imbecile.

And as I mentioned earlier, a big part of the problem is that no matter how much I try, no matter how much I know I should, I simply can’t muster any curiosity about other people. And that’s not a good start for making small talk.

Which I hate.

Here’s Vines on that:

We find [small talk] mind numbing, lacking in content, and tiresome, because we’re mainly tuning into the details and not focusing on the social or emotional purpose of the conversation, probably in the same way that typical people can find our conversation intense, overly technical, detailed, and exhausting. For me, it’s hard to come up with anything to say in a conversation that, on the whole, seems lacking in purpose.

I have frustrated many a significant-other over this. “Why were you so quiet?” and “Why didn’t you ask anybody any questions?” Well, because I didn’t have any questions. I didn’t realize there was a kind of social ritual being played out.

So one tactic I might use to fill verbal space is to talk about my own take on a topic, or my own experience, and I find that this very often falls rather flat. Again, turns out it’s because I haven’t tuned into what the whole ritual is about.

As an Aspie it feels natural to respond to a conversation by relating our experiences, especially when the topic is emotional. We’re basically saying, “I know how you feel/what you are experiencing because I’ve had a feeling/experience like that myself.” To us, it’s a display that we’re actually connecting to a person’s feelings and are bonding with them. However, typical people don’t need to have had a similar experience to feel what a friend might be feeling, and they don’t need to relate that experience to show they understand. Changing the topic this way on occasion is fine, but when we do it frequently, all a typical person hears is, “me me me.”

Alas.

On self acceptance:

I am not close to being in the place Vines has achieved. But I aspire.

What I really feel the need to say here is that there is nothing wrong with me. I’m just different. And any difficulties I have are the result of trying to live in a world where everyone around me is so different from me, not because I myself am faulty. I think Tony Attwood hit the nail on the head when he said, “People don’t suffer from Asperger’s Syndrome. They suffer from other people.” I’m not “wrong.” I’m everything I’m supposed to be and more. But both the social world and the business world that I live in aren’t set up for someone like me. I’m the proverbial square peg trying to fit in a round hole, and I can’t function effectively like this. I have so much potential to be useful, creative, even ingenious. The world just has to find a way to utilize me better. …

…

It doesn’t matter what label you carry or what cause you stand for. If you approach the world with an assured attitude and pride in who you are, other people will love and respect you for it. It’s only when you hide things about yourself that you convey that something is wrong or shameful about you that needs to be hidden.

The world isn’t set up for me. And I can’t make the world change for me. But maybe I can stop attacking myself over the dissonance I perceive. I play my song, you play yours. I hope I can.

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The Long Climb Up to Zero

Paul Fidalgo

I’m on my way back from CSICon, the skeptics’ conference put on by my organization, which took place in Las Vegas this year. One of the presentations was by Anthony Pratkanis, who introduced us to the phenomenon of “altercasting,” wherein a person can elicit desired behavior from others by adopting, and implicitly assigning, particular social roles. So for example, if he effectively assumes the social role of a teacher, we become students, and will find ourselves carrying out the behaviors that are expected of that role (dutifully taking notes if he suggests it, for example). And the power of this altercasting is such that once we have put ourselves into these social roles, we live up to them. We almost can’t help it. It’s a tool of con artists, as well as a skill that can be used for good.

On my way in to Vegas, I got a message from my wife asking if I knew what day it was. Uh oh, was my first thought. But then she reminded me: the sixth anniversary of the night I was ambushed late at night by two thugs on the street in DC, beaten to a bloody pulp, and sent into a years-long spiral of PTSD and myriad other associated problems. The anniversary date used to have a lot of power over me, almost as though the recurrence of the date would somehow “make it happen again,” which is of course nonsense. In the past couple of years, though, I’ve more or less let the day pass without realizing it, which is a small victory.

The years of therapy that followed this event, which I’m still working through, subsequently unearthed the vast array of phobias, self-loathing, weird hangups, anxieties, traumas, and other psychological baggage I’d been lugging around more or less since childhood. The PTSD diagnosis, it turned out, spanned far more than just one attack. I had been trained to experience existential terror, fight-or-flight amygdala activation, through years of bullying and abuse in my youth. In other words, I was early on placed in the social role of a subhuman target for derision. And with constant reenforcement, I lived up to it. I memorized it.

All this time, readers will know, I had been living with Asperger’s syndrome, and had no idea. I only found this out very recently, at age 38. This means I had been born predisposed to feel like an alien, unable to comprehend the behavior of the beings around me, stunted in my attempts to reach out or communicate, and often punished for it. The Asperger’s also contributed to a litany of other ways in which I experienced the world differently from neurotypical folks, so a great deal of my fears and limitations (social, intellectual, physical) were textbook aspects of the autism.

I felt like an alien for a reason, because I really was different. The misfortune of growing up in a bullying environment led me down the path of believing myself to be a bad alien, a bum unit out of the factory, a lemon, sent into this breathing world scarce half made up. To use Pratkanis’s concept, I likely altercast my social role as an unworthy to others as much or more than it was altercast upon me by others.

When one is of this mind, I’ve learned, one sort of expects to be called out, to periodically pay some kind of penance for one’s difference, for pretending to be a normal member of the species. Not so fast! We see you. In adulthood, you can go for longer stretches of time without being overtly chastised for trying to pass as human, but the dread of being revealed is ever-present. For me, it was a constant exercise of over-analysis of my behavior, my physical comportment, my speech, the direction of my gaze, my gestures, as well as kind of running apology for my quirks, oddities, and deficiencies. It’s as if to display a running advertisement to the rest of the world that says, “I know I’m not like you, I get it, and I’m sorry.”

The attack six years ago felt like one of those moments of being caught, unmasked. Ostensibly those assailants were beating me up to get my wallet and phone, but to me, they were punishing me for existing. Not so fast. We see you. In the moment of the beatings, it felt like I was finally going to be killed for it, and that didn’t seem too strange to me. I had it coming.

I now am meant to unlearn all of this. I am supposed to be working to memorize a different story about myself, to assign myself different, affirming social roles.

The Asperger’s diagnosis should be making this task easier. Before the diagnosis, this was an exercise in convincing myself I was fine the way I was, and that there was nothing about me that inherently made me unworthy of membership in homo sapiens, which is quite an uphill climb, psychologically, intellectually, and emotionally. My mind had been trained to believe the opposite, and now I had to learn that I was as worthy of respect and agency as anyone else – not in spite of my various quirks, hangups, and differences, but regardless of them. Knowing now that I had been working with an autistic brain all this time should have eased this path, because it explained the majority of my differences and my feelings of alienation, giving them a name and a cause. Rather than working to accept a bubbling, undulating mass of traits, something that seemed scattered and very abstract, I now had a concrete, definitive First Cause. Whereas I had once felt that I had a torrent of faults of my own making with which I had to come to terms, now I knew I had a condition. I was born with an atypical brain, and there was and is nothing to be done about that, so I might as well just be okay with it.

But three months or so into my life as a diagnosed Aspie (which is a short time, I know), this hasn’t happened. What I hoped would be a huge relief and a license to finally accept myself as I am has proved to be much more complicated and fraught. At conferences, for example, like the one I’m leaving right now, I still default to the social role of the barely-tolerated freak, the alien who needs to at least imply apology for just being there. Awareness of my own Asperger’s hasn’t erased the limitations of that condition, so I still flail and sweat and panic my way through even the most banal interactions (especially those). Rather than accept the fact that I simply can’t perceive what others naturally perceive, I go into a kind of processing overdrive, likely coming off even weirder than I might otherwise, and certainly exhausting myself. The cascade of self-doubt, self-loathing, and shame for existing continues as it ever has. If anything, now I add to my longtime mountain of struggle the knowledge that I am being “a bad Aspie,” failing to accept and live out that reality.

So even after all this self-realization, after all this really hard work, there remains a social role I seem immune to, over which altercasting has no effect: Respected peer. It’s not as though I get no validation from friends and colleagues. Good-hearted people in my life expend great effort trying to imbue me with some sense of self-worth. But their words, their sentiments, their compassion, sincere as I assume it to be, just bounces off. It simply doesn’t penetrate. Words of encouragement and affirmation sound as absurd to me as being told I have three heads or telekinetic powers. I know it’s not so, no matter how passionately you try to convince me.

I know, I know. The point is not what others tell me, how they validate me. The goal is to start within myself, to memorize a new narrative of my own making. It’s just proving a lot harder than I thought. Understanding the core source of my alienation hasn’t erased the alienation, not yet anyway. And all I aspire to, really, is to stop at knowing I’m different. To take no further steps, either into self-loathing or even affirmation.

A mere feeling of neutrality about “the way I am” would be a goddamned paradise. But man, it’s still a long, long way up just to get to zero.

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Unavoidable Ambience

Paul Fidalgo
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Ed Yourdon via Foter.com / CC BY-NC-SA

I admit it. When I walk through an airport (which I’ve done quite a lot of in the past couple of weeks), and see almost every pair of eyes staring at a phone or tablet screen, I get the feeling that something is wrong. It bothers me.

This is of course absurd if you know anything about me.

I adore smartphones and tablets and computers. I also hate being around groups of people, particularly strangers. In large part due to my Asperger’s syndrome, I’m deeply averse to casual human interaction, small talk, and establishing connections with people in meatspace. The smartphone and its ancillary technologies are a gift to someone like me; yes, as a way to escape and feed my mind and sate my need for dopamine squirts, but also as a means for me to communicate and build relationships on my terms, in my own time, and at a safe distance. I am serious when I say that I am so very grateful for these devices.

And yet. As my eyes survey a public space stuffed with humans, just about literally all transfixed on their phones, I can’t help but feel like something has gone wrong. I mean, they’re not all autistics and introverts, right?

If anything, I should be relieved. The more people who are engaged with their devices, the fewer there are to creep into my space and demand my attention and energy. As it is, I blend right in, which has been perhaps the chief aim of my existence in physical space since I was 10 years old.

Am I being weirdly territorial? Do I resent the normals of the world encroaching on my virtual space and leaning on my crutch? I mean after all, I’m in that space to get away from everyone, not meet up with them through a different venue.

Nah. These people may be online, but they’re still nowhere near me.

And anyway, I’ve argued before that there’s no reason to be judgmental about someone using a phone. Yes, it appears to the observer that all phone-gawkers are the same, passively consuming some digital confection of little to no value. But for all anyone knows, this person might be reading a scientific paper, that one might be engrossed in a rich novel, and that one might be reviewing important job-related correspondences. There’s no way to know.

But, you know, probably not. We still have no room to judge, though. I know that sometimes the best thing a person can do to heal psychological exhaustion is to vegetate for a bit, and rest one’s higher processes.

I suppose some of this has a lot to do with my own conditioning. I grew up to expect people to be interacting with each other when they’re in proximity. Lord knows I was never good at this, or ever liked it — indeed, it’s usually painful. But I knew that I was different for feeling this way, wrong, and well before I was ever diagnosed as autistic or sought therapy for my difficulties. I was the odd duck, while everyone else was doing it right. I learned, correctly or incorrectly, that this socially connective norm was right. To step back out into the world now, and in such a short space of time see things change so drastically, is jarring. I think, what happened to all of you?

*

we-ignore-the-people-who-love-us-in-order-to-carry-on-conversations-of-dubious-relevance
Ed Yourdon via Foter.com / CC BY-NC-SA

For a few weeks now I’ve been chewing over in my mind the recent New York Magazine essay by Andrew Sullivan, where he cops to becoming consumed by the digital space, recounts his efforts to center himself and his priorities, and worries aloud about what the new smartphone era is doing to society as a whole.

I deeply respect Sullivan — he is a major influence on my work, even when I disagree with him. And here, I do feel like his own, very real feelings of loss and panic have caused him to project too much on the rest of the world.

Nonetheless, let’s consider some of his observations.

As I had discovered in my blogging years, the family that is eating together while simultaneously on their phones is not actually together. They are, in [Sherry] Turkle’s formulation, “alone together.” You are where your attention is. If you’re watching a football game with your son while also texting a friend, you’re not fully with your child — and he knows it. Truly being with another person means being experientially with them, picking up countless tiny signals from the eyes and voice and body language and context, and reacting, often unconsciously, to every nuance. These are our deepest social skills, which have been honed through the aeons. They are what make us distinctively human.

That feels worrying, to be sure. There’s something rather disquieting about the idea that we’re slowly atrophying our fundamental humanity. I don’t know that we actually are, but he’s at least succeeded in scaring me a little.

But look at one of the examples he uses here. “If you’re watching a football game with your son while also texting a friend…” In a hypothetical scenario in which a person is lost in digital distraction, he chooses another form of distraction as the venue: watching a football game. He doesn’t say whether he means watching one on television or in person, but it almost doesn’t matter. He’s talking about two people in the same place being distracted by the passive viewing of the same meaningless thing. A game! I absolutely grant that the parent and child here are missing out on the chance to connect over a shared experience as a result of the parent’s texting, but it remains that the original activity was one of passive consumption in the first place. (To be clear, I think the parent in this scenario should definitely put the phone away and be with their kid — I’m just pointing out the weirdness and the irony of the scenario Sullivan has chosen.)

Now put aside for a moment the parent-child aspect of this. Sullivan presumes that the connections being established over a digital medium while watching a football game are less valuable or less meaningful because they don’t occur in meatspace. I’m not refuting that per se, but I’m also not prepared to grant it axiomatically. I have what I consider to be very meaningful relationships and connections with people I have never met in person, and exist to me primarily as Twitter avatars or what have you, and I truly appreciate them during shared experiences like presidential debates. But again, I’m also autistic. And I also know that my in-person connections to people like my wife and children are more valuable and meaningful to me than all the smartphones in South Korea.

So like Sullivan I strongly suspect, if not from my own inner life then from my observation of other humans, that people need these social skills that have been “honed through the aeons.” But there are countless tiny signals and nuances in the digital realm as well, so there is the possibility that we are just honing new skills that will adapt us to a changing world.

It’s kind of the story of human civilization anyway, isn’t it? A wandering species of animal that somehow stumbles along building megacities and spacecraft and internets as its neocortices and amygdalae do-si-do throughout the millennia, hoping we don’t murder too many of each other and open too big of a hole in the food chain for some other species to become the boss. (I’m looking at you, octopuses.)

*

Sullivan also says that spirituality itself is being replaced by the unavoidable ambience of consumable content, because spirituality requires silence.

The reason we live in a culture increasingly without faith is not because science has somehow disproved the unprovable, but because the white noise of secularism has removed the very stillness in which it might endure or be reborn.

That’s a bit of a reach. The claims about the nature of reality made by faith traditions have indeed been disproven bit by bit over the ages, and we do now live at a time when they have been so utterly demolished by science — and even lived experience — that the outright rejection of faith in general becomes an increasingly tenable and normal condition. Has the noise of media contributed to this? Almost certainly, but I think it’s as much the content of that noise as it is the quantity.

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clasesdeperiodismo via Foter.com / CC BY-SA

However, I think there can be little doubt that our current state of affairs is one in which there is precious little space for silence. And too many of us aren’t wise enough to seek it out of our own volition. Sullivan got wise, but only after driving himself to the brink. I am also very new to the notion that silence, space, and meditation (in the broadest sense) are not just sometimes pleasant or preferable, but necessary, physiologically and psychically. Silence is medicine I must remember to take.

And I must remember it on my own. Apart from the encouragement of my wife and therapist, there is no mechanism built into the digital age’s social infrastructure that either imposes or easily facilitates this (unless the power grid goes down). Our world is built on an increasingly complex lattice, made up of strands of distraction. For now, the choice is entirely our own to close our eyes and refuse to follow each strand as it passes our awareness. And it’s a choice that becomes more and more difficult to make all the time.

Those hundreds of people I see in one glance around the airport, each to a person gazing into an imperceptibly dense mosaic of pixels; if they’re not interacting with each other as I have grown to expect them to, I wonder if they ever find silence. I wonder if they ever seek it.

As an Aspie, I am highly sensitive to noise, crowds, and torrents of stimuli. So maybe that’s what concerns me when I see them, that I unconsciously perceive that even if I can’t literally hear it, there exists among this sea of glowing rectangles an ever-increasing amount of noise, forming into a tidal wave of clamor that will eventually sweep me out to sea.

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Quirky: Adapting for Asperger’s at the Expense of Sincerity

Paul Fidalgo
sand_maurice_masques_et_bouffons_11
No really, I’m like this all the time.

Coming to terms with being a 38-year-old man with Asperger’s, having only been diagnosed a few weeks ago, has naturally lead to reexaminations of my behavior. The first things I’ve focused on have been those aspects of my personality that put me blatantly at odds with the rest of the species, such as my extreme introversion, my inability to read others’ signals or intentions, and my aversion to overstimulation.

But as some of this has begun to settle, I also find myself going a few layers deeper, and I realize just how much of my identity is wrapped up in how I’ve compensated for the hindrances of Asperger’s. Some of the more interesting exploration is not about my differences, but my adaptations — the behaviors I’ve adopted to mitigate those differences. Successful adaptations, even.

As I’ve noted before, some people have trouble accepting my Asperger’s diagnosis as a valid one, because all they see are the adaptations. They see me as someone who’s generally smart and funny and well spoken, someone who is obviously not “the average guy,” but someone a little different, just a little odd, and harmlessly so. A bit nerdy, a little geeky, and humorously self-effacing about all of it. Maybe a little too self-effacing, but oh, that’s just Paul. One of his many quirks.

That’s me. I’m quirky.

Paul says some weird things sometimes, or Paul gets oddly quiet and distant, or Paul seems to find everything funny, but also every once in a while he takes something too seriously, and talks a little too much, too fast, and too loud. But that’s just his quirkiness.

If anyone comes away with that impression of me, as “quirky,” then I have successfully adapted as best I could. Once it became clear to me, probably around my mid-teens, that I was never going to be considered “normal,” and not even in the same universe as “cool,” I decided (partly consciously, partly unconsciously) that I would adopt a quirky identity. I’d be the funny sidekick, the sarcastic friend, vaguely-artsy oddball, just minimally different enough to cover up just how utterly alien I actually felt. My quirkiness was like a white noise machine to help muffle and distract from the sound of the train line running right next to the house.

Decades of this practice led me to believe that the act was who I really was. In a new social setting, I’m harmless-quirky, making little jokes when it seems safe to do so. With bosses, I’m grinning-idiot-quirky, engaged and overly eager to agree. With closer friends, I’m wry-quirky, able to vent a little of my misanthropic steam, but in a safe and humorous way. And so on.

It even extends into my online persona, where the facepalming-Paul avatar has become my unofficial insignia. I have a quirky logo.

Some of it is natural, some of it is very much forced. But over the years I think I may have gotten so good at it that I don’t know when I’m “working” and when I’m just “being.”

But without this adaptive behavior, I don’t know how I would have navigated the real world. Maybe if I had known I had Asperger’s, and accepted the things that made me different, I wouldn’t have bothered to try so hard to please and to pass. What would I have been like? What happens if I decide to drop the quirk now? What will I be?

I think the scary answer to that is: sincere. I’d be sincere.

I am not an insincere person, per se, not in the way we usually think of that term. I’m not two-faced or deceptive or phony. What I mean by sincerity is a dropping of unnecessary pretenses and performances, allowing whatever person was behind those masks to come out and breathe.

That’s terrifying!

I can’t say with any exactness, but I suspect this hypothetical sincere version of me would be less expressive when in the company of others. Even in conversation, I might look distant or even severe, even if my actual feelings were entirely benign. I would interject less often, and save my words for when they might contribute to something. That might make me appear disinterested or “shy,” even if I felt neither. A more sincere version of me might excuse himself entirely earlier and more often in order to recover from the stresses of stimuli.

A sincere version of me would be less concerned with a projected personality, online and off. He would not think so much about cultivating a “brand” for himself, and simply let his work and his words speak for themselves. It would likely have no impact on the number of Twitter followers I could boast, and this version of me (again, hypothetical) wouldn’t concern himself with that anyway, because why bother.

This sincere-me would relieve himself of the stress engendered by worrying over what people thought of his various interests and obsessions. Contemporary geek culture has made the world a safe place for folks to proudly parade their allegiance to various fiction franchises, but that’s not quite what I mean, because what that really adds up to is a new in-group that happens to be made up of people who once languished in out-groups. That’s good and fine, but not what I mean.

I mean that when I have a driving obsession with something that holds no obvious value to anyone but the satisfaction of my own brain, that’s not a failing. It’s not something to be embarrassed about or ashamed of. I can just pursue that interest (within reason and feasibility) without regard to the opinions of others.

And I – I mean this hypothetically sincere version of me – wouldn’t have to make excuses for any of it. He wouldn’t have to apologize, and qualify himself with “I know this is weird” or “this probably seems silly, but…” He…I…would just follow the string of curiosity where it leads, and allow my brain its squirts of dopamine whenever they can be safely had.

The last bit of this is the hope that sincere-me would not indulge his autism and oddness at the expense of his responsibilities to those he loves. I don’t see that as a problem, because one thing that even quirky-me can be sincere about is my love and devotion to my wife and kids. I don’t need to “act” that, no“passing” required. Come to think of it, I’m very lucky for that.

The adaptations of Asperger’s have been enormously expensive in countless ways. They have eaten up time, energy, and my valuation of myself. Maybe over time, as I truly come to terms with this condition and its implications, I can begin to turn down the dials, divert power away from the quirk-generators, and recoup some of what I’ve lost. I would sincerely like that.

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You Don’t Seem Autistic to Me: Asperger’s and the Fear of Not Being Believed

Paul Fidalgo

[Updated below]

Do you remember when you were a kid, and being sick meant the tantalizing possibility of staying home from school for a day? I was usually pretty pleased to be just sick enough to avoid the misery of middle and high school, as long as the illness in question wasn’t something agonizing. (I did have some brutal ear infections back then that I did not enjoy.)

I remember that I would become pretty defensive about just how sick I really was. “Are you sure you’re not well enough to get through the day?” my parents would ask. I, taken aback by my parents’ skepticism, would respond with incredulity. “Yeeeesssss! I’m suuuuuure!” That defensiveness was due to the fact that I knew I wanted to be sick, and I knew that it was possible that I could maybe make it through the day, that I was perhaps playing it up a bit. It didn’t occur to me then, but does now, that this over-dramatization of illness on my part was probably already being taken into account by my parents and their decision to allow me to stay home. Melodrama was built into the stock, as it were.

Today something very similar is cropping up for me in a whole new way with my recent diagnosis of Asperger’s syndrome. (Here’s my first post on this new revelation, and some follow-up.) I am finding myself feeling very defensive about the fact of my condition. I am often under the suspicion that certain people in my life doubt the reality of my Asperger’s, that they think I’ve either gotten a bad diagnosis, or that I’ve somehow manipulated the process to get it.

In reality, only one person has actually said anything like this, and it was said with the best and most generous of intentions, saying that I am just too “charming” and personable to be someone with Asperger’s, comparing the behavior they see from me with others they know with the same condition, and who seem very, very different.

And I get that. Many people with Asperger’s, and many of the fictionalized portrayals of Asperger’s in entertainment, have glaringly severe social impairments that are obvious and off-putting to neurotypical people. There are aspies who really look like they “have something.” Whereas I don’t seem that way to most people. I would venture to say that no one, save my wife and therapist, would have ever entertained the notion that I might be at all autistic. I pass extremely well in most cases.

And why wouldn’t I? I have spent the better part of four decades trying to not seem like an alien, but suffering under the constant stress of my what I perceived to be scrutiny and revulsion from others. I had every incentive to appear as normal, as charming, as personable, and as funny as possible when in the company of people. And when attention on me wasn’t a requirement, my incentive was to blend, to disappear, to go as unnoticed as possible. As far as my brain was concerned, this was a struggle for survival. I, at a biological level, believed I needed to pass and to blend in order to live.

And I had no idea why it was so, so incredibly hard. I had to assume it was my own stupidity, laziness, obliviousness, or defectiveness.

So of course I don’t seem like an aspie to most people most of the time. As a contrast, there’s a person I know who I strongly suspect is also an aspie, but hasn’t felt the same need to adapt or ingratiate themselves to others, and has instead fully embraced their quirks, to hell with everyone else if they don’t like it. I never had the luxury to go in that direction, and it never occurred to me to be an option. I felt I had absolutely no choice but to pass.

And like the kid who is secretly glad to be sick in order to be able to stay home and watch TV all day, I wanted this diagnosis. I hoped the neuropsychologist would come back with a clear statement that I, indeed, had Asperger’s. It promised to explain so much of the pain and alienation and utter confusion I’ve experienced all my life, and it would mean that it wasn’t all due to my own failures to “live up” to the rest of the world’s norms and expectations. So I worried that in my testing, I might unconsciously try to “game the system,” and make myself seem more “aspie” (as though I would really know how to do that). Just as I was worried about others’ suspicions of me, I was suspicious of myself.

This worry, though, turned out to be a pointless one. The testing, which took about 10 hours total, was so, well, alien to me, so removed from anything that I thought could relate to Asperger’s or much of anything else, I couldn’t have gamed it if I’d wanted to. And like the mom who already presumes their sick kid is probably overstating things just a little, these tests and evaluations have unconscious leanings already taken into account, as their abstractness and inscrutability are a definite check against the gilding of psychological lilies.

In the interviews and written portions of the evaluation, I did check myself for embellishment, but it turned out I felt no impulse to embellish. Honest, straightforward answers according to my own genuine thoughts and feelings were enough. They spilled out. I told my story as honestly as one could, because that story was full and rich and silly and sad all by itself. It didn’t need any dramatization or exaggeration. It was whole on its own.

And the doctor’s diagnosis was indeed definitive. There was no hedging, no “jump ball,” as Ray Romano’s character on Parenthood put it when he looked into the possibility of being an aspie himself. It was for sure. The doctor described it as “severe,” meaning firmly on the spectrum, and she explained how my results on the barrage of seemingly unrelated tests all confirmed this, one after the other.

She also described how people with Asperger’s commonly find themselves drawn to the arts and to acting in particular. Aspies usually have sharp minds and good observational skills, and use those to their advantage in learning particular crafts and in the imitation of others’ mannerisms and behavior. I’m a pretty good stage actor, and it turns out I’m also a pretty good neurotypical imitator. As I said, I’ve had almost 40 years of practice.

So it’s no surprise that I don’t “seem” autistic to most people. The doctor actually tried to impress upon me what a remarkable achievement it is that I’ve gotten this far, with a master’s degree and a meaningful job and a wonderful wife and amazing kids, all while trudging through this morass, and navigating through the confounding labyrinth of my differently-wired brain.

But rather than take pride, I tend to feel defensive. I still stress over scrutiny. I still worry about the doubts of others. Just as I’ve felt like a fraudulent human, always about to unmasked and humiliated (which, remember, I internalize as a genuine threat to my survival), here I am again afraid that others will think my autism is overstated or a mere performance.

Just last night I had a conversation about my autism with someone who has their own personal experience with people close to them who also have Asperger’s, and I felt like I was drowning. I rambled and sputtered, I spoke too loud and too fast, and I kept lurching back and forth between filling up conversational space and worrying that I had gone on too long. I was a hot mess, and now I realize it was because I was afraid I wasn’t being believed. This person had not said or done anything to make me think that, but I just thought that. In discussing something so new and personal and raw, I scrambled and flailed to protect myself.

I don’t want to feel that way anymore. Part of this new chapter of my life is the beginnings of acceptance and belief in myself, regardless of what others think, or even more important, what I perceive or suspect they think. That would be true even if I didn’t have Asperger’s.

This is real. This is who I am, and who I have always been. And though it is as old as I am, for now it is also new. In some ways, I am new. The coming months and years will find me experimenting with and easing into new ways of being and behaving that better suit me, and stepping back from many of the affectations and masks I’ve layered upon myself over the years. Many of those layers will stay, because they, too, are me.

I guess, when it comes down to it, I get to decide. I will try not to make that process harder on myself by worrying about the imagined doubts of others, which only fixes those layers more firmly in place.

Update August 27: Since writing this, one thing should be clarified. Some of the doubt I imagine to exist, but likely doesn’t, is about me, but another more problematic version of skepticism is doubt about the neuropsychologist who diagnosed me. And I just don’t know what to say to that. She’s an expert in her field, with decades of experience, and a particular specialization in adults on the spectrum, and she tested me for hours and hours over a period of months. And that’s in addition to the diagnosis of my regular therapist. But they don’t know what they’re talking about? 

Honestly, if you think my doctor is wrong, I don’t know what to say to you. I’m not sure why you’d know better than them, or know enough to think they somehow screwed up completely. But it’s very frustrating.

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Asperger’s, Corrective Lenses, and the True Self

Paul Fidalgo

What does it mean to “be yourself”? I think it means to behave as you would if you were more or less unconcerned with how others perceived your behavior, and I assume it’s implied that this being-yourself behavior is largely within the bounds of the law and socially acceptable norms.

My recent diagnosis of Asperger’s syndrome has opened up the opportunity for me to let go of my self-doubt and self-mortification, and to begin to embrace my Aspie nature, within reason, without concern for how it plays. It sounds pretty exciting! A lifetime of anguish can now be discarded, and real liberation experienced! I can be myself! I can be the real me!

The problem, however, is that I’m not sure what the real me actually is. I’ve never really experienced the unfettered, unthreatened real me. Depending on the circumstance and either my comfort level or lack of inhibition, I presume have let varying degrees of “real me” emerge, be it in small drabs or convulsions of impulsivity that I have almost always regretted. But to put down all of the armor, to remove the masks, and to deactivate the constant self-surveillance, I do not know what that is. I don’t know who that is.

I mean, it’s “me,” right? But “me” is also the sum of my experiences plus the “real me” of genetics and biology. By that way of thinking, the self-loathing and self-censoring mini-golem I have been all my life is the real me.

However, now I know about my condition. I know that my brain was wired differently at birth through no fault of my own (or anyone else’s). So this new knowledge is now one of those experiences, it’s a new piece of “real me.”

Which I guess brings us back to where we were. So maybe the question is, what is the real me now?

One way to answer that might have to start with a different question: What would I like to be the real me now?

When the prospect of being prescribed things like anti-anxiety and anti-depressive medication first came into my life, I was very reticent. I was hung up on the fact that what makes me who I am is my brain, just the way it is. While taking certain medications might make me feel better in certain ways, and make life more manageable, I feared that the medication would fundamentally change who I was, by tinkering with the chemistry of my very Self.

But what I came to accept and appreciate is that if we’re lucky, life, being ridiculously short, offers us the chance to augment or repair aspects of our existence that hinder our well-being. I wear glasses to correct my vision, and I don’t consider blurry vision to be a key aspect of my true self. Having corrected vision absolutely impacts how I perceive and interact with the world, with countless internal and external implications. It’s a small thing, to wear glasses, but its effects are life-altering. But I don’t feel I’m being untrue to myself to wear them. If anything, I now consider them a part of my identity. I have adopted them into my “self,” so that “real me” is, among other things, a guy who wears glasses.

And so I decided it could be for pills to make me less sad and less scared. The real me would now be a guy (with glasses) who takes pills to make himself less scared and sad. That feels okay.

Today, I’m a guy who’s just found out he’s autistic at the age of 38. I didn’t have the benefit of this knowledge growing up, so I assumed I was faulty and subhuman, sent into this breathing world scarce half made up.

Cynthia Kim of Musings of an Aspie wrote something about self-acceptance that echoed my own experience, to a point:

When you grow up knowing that you’re different – and worse, suspecting that you’re defective – acceptance doesn’t come naturally. Too often, autistic individuals are acutely aware of the ways in which they don’t measure up to social norms. As a child, I knew that I wasn’t like most of the other kids and in the absence of an explanation, I assumed that I was simply doing something wrong.

Finally having an explanation for my differences forced me to challenge some long-held beliefs about myself. What if all these things that are wrong with me – I was still thinking more in terms of “wrong” than “different” – aren’t my fault?

Those first inklings of acceptance brought me immense joy. Decades of thinking I just wasn’t trying hard enough were cast in a new light. I wasn’t defective; my brain worked differently.

I hoped for immense joy, but it hasn’t come yet. When the diagnosis was confirmed, there was no light from the heavens that lit up my soul and freed me from my past. A burden was lifted, surely, but a different one was placed on me, one that sounded more or less like “now what?”

To be sure, self-forgiveness is coming. I now know why I didn’t “measure up to social norms,” when “be yourself” was simply not an option. And that’s very welcome. But what’s not clear yet is how to move forward.

Here’s what I do know. I want to drop the armor and masks in a pile, and walk away from them forever. I want to shut off that self-surveillance system that’s been running inside me since I can remember, and disconnect the power supply.

But I also want to know which of my Aspie quirks and predilections can be fully embraced, which I have to regulate, and which I have to bury. I know I can’t let go of all control and turn into some hyper-misanthropic live wire. I have responsibilities, and I have people I care about who need me to regulate. Who need me to put my Asperger’s traits aside as best I can, at least sometimes.

So it seems what I need to do is to start examining all these pieces one by one, and experimenting with what works and what doesn’t, which aspects of the “real me” I can run with, and which ones need to adjusted or worked against. I’ll need to discover how they work in different combinations with each other, and in what contexts. I’ll need to decide which ones I actually like, and which ones I want to curtail because of some unhappiness they might bring.

What eventually becomes the “real me,” then, will take time to emerge, and be at least in large part of my own making. I’ll be a guy with glasses, who takes pills to keep from getting to sad or scared, whose brain is wired to have some real big problems with the world around him, who also has some gifts to take advantage of, and who found out at 38 that he has Asperger’s syndrome. Somewhere, in all that, I hope I can find a real me.

And I hope that eventually I can, for the first time in my life, be myself.

A More Forgiving Lens

Paul Fidalgo1 Comment
The author and his little brother in 1980.
The author and his little brother in 1980.

I have never felt like I belonged in this species. I resembled a human, and I could force myself to awkwardly ape the basic mannerisms of people, but I would always suspect that there was something alien about me, and that everyone else suspected (or knew) the same thing.

A lot of this alienation is in regard to my relationship to, and interactions with, other people. I’m a pretty severe introvert, that’s no secret. Being around people, even those I love and feel most comfortable with, utterly exhausts me. But I’ve always felt that there was more to it than mere introversion. For as long as I can remember, I’ve struggled to relate to almost anyone, unable to comprehend others’ values, aspirations, needs, obsessions, or subtexts.

As a result, I’ve been at a loss as to how to blend, to appear as though I do understand, or at the very least to keep my bewilderment hidden. So I’ve thrown an inordinate amount of processing power at figuring out how to appear normal, how to talk, stand, sit, move, gesture, and where to fix my gaze or how to modulate my voice. I pretend to value the same things other people value and aspire to the same kinds of things they aspire to, even to the point of almost entirely convincing myself.

That alienation, this constant dissonance, was of my own making, I believed. I didn’t share the same interests as others because I had somehow failed to grasp the obvious reasons they were important or provided joy. I didn’t engage in sports or other physical activities because I was weak and afraid and unwilling to put the time in to not be that way. I had trouble comprehending instructions and directions because I was being self-absorbed and inattentive. I had trouble reading for any length of time because I was superficial and distracted. I upset people I love, not giving them what they needed, because I was negligent, self-centered, and oblivious. I didn’t want to socialize because I was a stick in the mud, narcissistic, and timid. I didn’t want to go on big adventures, travel, take big risks, or throw myself into new situations because I was cowardly and lazy. That summed up why I fared so poorly, academically and socially, throughout much of middle and high school: I was cowardly and lazy.

What else could I conclude? And having reached such a conclusion, over and over, in every circumstance from childhood to my late 30s, brought self-hate, depression, anxiety, resentment, and resignation. How could it be any other way?

I did have one suspicion, though. A suspicion that kept popping into my awareness, something that felt familiar, but also sounded too alien even for me.

That suspicion only grew, however. When I would air it out loud to someone, it would be summarily dismissed. I, not trusting my own perceptions of the world, not knowing how to be a person, conceded to the dismissal. But only outwardly.

I stopped conceding. I have finally pursued this suspicion to its end, and, well, it turns out for once I was right.

Last week, at the age of 38, I was officially diagnosed with Asperger’s Syndrome, a form of Autism Spectrum Disorder, along with Attention Deficit Hyperactivity Disorder.

I have Asperger’s. I am autistic.

I’m so very glad to know. And I’m also glad that there was no hedging on the part of the doctor, the neuropsychologist who tested and diagnosed me. As my wife Jessica and I sat down in her office, the doctor mercifully began by saying, “I’ll cut to the chase, because I know you’re eager to know,” and told me that I had what she characterized as “severe” Asperger’s syndrome. Not severe in the sense of debilitation or in some kind of danger, but meaning that I’m firmly, well into the spectrum. Had the diagnosis been fuzzy, a borderline case, I’d never stop wondering and doubting. Having it be so clear-cut was a relief.

When I first began toying with the idea of getting tested, I couldn’t avoid the fact that simply knowing I had Asperger’s, if indeed I did, wouldn’t really change anything. There’s no medication to take, there’s no real treatment. I’d just go on as I had been. I had to ask myself, well, why bother?

Here’s why. The dissonance of my life – my strange predilections, my quirks, my strong and irrational aversions, my inability to read or connect with other people, my lack of interest in the experiences of life, my intractable obsessions over particular topics and utter lack of curiosity for almost anything else, my desperate need for safe and reliable routines, my spacial disorientation, my hypersensitivity to heat, sound, and light, my clumsiness and lack of coordination, my over-reliance on rules and logic, my inability to think in broad, big-picture terms, and most especially, the panic, pain, and exhaustion I experience in even the most benign social situations – I have always ascribed these things to my being a failure as a person. A lazy, cold-hearted, short-sighted coward.

Now I know that much of it (not all, of course) stems from something I was just born with. There was an actual condition that made it impossible that I could ever be and think like everyone else. My brain was literally different from theirs, and there was nothing I could have done about it.

Generosity of spirit is one of the virtues I value most, but it is never something I allowed for myself. Instead, I have tortured myself over my past, for the things I endured and the things I felt I had brought upon myself, because I had failed at some point to become fully human. I blamed myself for having neglected to learn how to be a normal person. I wasn’t just unable to cut myself a little slack for the failures and disappointments of the past, I had forbade myself from doing so. To forgive myself, I felt, would be to allow myself to continue to fail and disappoint.

Now I can reevaluate. I can look back on the story of my life through a more forgiving lens. I honestly don’t know what that might do to me.

As I sit here now and tell myself this is real, it’s hard to accept, even though it’s mostly welcome. I obviously have a great deal more processing to do. Some of that processing I’ll do here, in writing, as it seems to be the way I best understand and express my thoughts. In writing, the rules and parameters, and there are no social cues to miss or misinterpret, no eyes with which to avoid contact, no expected time frame in which to form and verbally express a thought, no expectation that I intuit the nuance and give-and-take of a real-time conversation. Here, I don’t have to second-guess my very worth as a human being.

Actually, maybe that’s the first thing I should do: Accept, finally, that there is nothing to second-guess, and that I don’t have to pretend to be normal anymore. Maybe I never did.

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