Tag: autism

A solid bit, an easy laugh

Paul Fidalgo

“Running Gag”
An original song by me, Paul Fidalgo.

Lyrics:

Alright, you know, how on Saturday Night Live they tell a
Joke, a lot, until it isn’t funny anymore
Well that’s as good a way as any to tell 
You about myself and how I manage to
Relate to those unfortunate enough to find
Themselves involved in intimate relations with a 
Man who can’t assemble a coherent personality
I guess that what I’m sayin’ is I’m a

Punchline
A solid bit
An easy laugh
I can be your running gag

Hold on, I think that I just caught you crack a 
Smile, a ray of hope that tells me that you might look 
Past the crap and understand the little boy who 
Had a lot of trouble making friends, okay
I’ll stop, you’re right, it’s probably too early to
Begin to dump the bullshit that I put up with when
I was twelve, but it’s kind of important if you 
Want to know more about me than that I’m just a

Punchline
A solid bit
An easy laugh
I can be your running gag
I’ll slay the crowds
I’ll impress your mom
I can be your stand-up man

And I promise not to cry
In front of you

Refresh my brain, what is it we were just talking 
About? Oh yeah, I was going on about how 
I can use self-deprecating humor as a 
Way to hide, but we can change the subject but 
Before we do I just want to be clear that I am 
Not a nut; a little on the spectrum but I 
Swear it’s not something you need to be concerned 
About. Just keep on telling yourself that I’m just a

Punchline
A solid bit
An easy laugh
I can be your running gag
I’ll slay the crowds
I’ll impress your mom
I can be your stand-up man

The True Self Gives Life to the Mask

Paul Fidalgo
Image for post

A million years ago, when I was attending the Actors Studio Drama School in New York, my class took part in a fascinating three-week workshop on performance in masks. While considered sort of avant-garde today, theatre more or less began with performers masking themselves or disguising their faces to tell stories. The classics of the Greeks and the slapstick buffoonery of commedia dell’arte were all originally performed in masks. The most common icon for theatre today is a pair of masks, one for comedy and one for tragedy. So this was going to be some exciting work in getting back to the roots of our craft, learning some vital fundamentals.

The sessions began even more fundamentally than we expected. To the surprise I think of many of my classmates, the first week’s session was absolutely free of masks. After a rather reverent introduction to mask work, we spent the rest of our time staring at our own faces in the mirror. Up close.

Literally face to face with ourselves, we were instructed to look deeply and coldly at our reflections. We were told to examine every line, curve, spot, and flaw with excruciating detail and meditative patience. We were made to drop all attempts at animation or expression, to let our faces find a state of absolute rest, to give up control of our facial muscles to gravity.

It was difficult and emotionally challenging, and yet we were to refrain from showing that emotion. We needed to simultaneously investigate our own faces with impartiality while also retaining mastery over them. This would be hard, I think, for anyone to do, but imagine the struggles of a room full of actors, all building their careers and lives on the imperfect, asymmetrical image before them.

As the workshop sessions went on, the reasoning for subjecting us to this became clear. Before we could ever be allowed to put on a mask, we had to reckon with the ones we were already wearing.

It’s a cliche to say that we all wear a mask to some degree, actors and non-actors alike, but it’s also true. The metaphor of the mask has special resonance with me, not just because of my life as an actor, but for the masks of normalcy that I have shielded myself with for decades. I won’t recount all the ways in which I am an odd duck, but consider the utility of “masking” for someone who has always been small, anxious, and awkward, creative and highly sensitive, bullied mercilessly in childhood and subject to other traumas in adulthood, and, for the kicker, on the autism spectrum.

Particularly since being diagnosed with Asperger’s only a few years ago, I have been working very hard to deconstruct those masks, to peel them away, layer by layer, and discover who the person behind them actually is. To pass as human had been the enterprise of my life, and over time it exhausted and sickened me. I lost myself within those masks, and I was terrified of who I’d find once they were gone.

I didn’t need to be. Here I am in my early 40s, getting on just fine, all things considered. It was enormously difficult, but I have learned to accept a great deal about who I am and who I never will be. I have grown to appreciate things about myself I never allowed myself to before, and I’ve acknowledged ugly truths about myself as well.

But just as I miss my life as a professional actor, taking on roles and living different lives, sometimes I miss the masks. Just as a costume can help bring an actor more fully into the mind of their character, a metaphorical mask allows a person to adopt qualities they might not otherwise possess. A personality enhanced by a mask may not be “genuine,” but is it necessarily false?

As part of coming to terms with my true self, I’ve had to accept and own my introversion and social awkwardness. But in the areas of my life where more confidence and gregariousness are called for, as in many work-related situations, am I better served by resigning to my “true self,” or might it be warranted to augment myself with the traits necessary for success? In other words, if I’m shy, but I decide to pretend to be outgoing, am I betraying myself?

A few years ago, I might have answered yes.

Part of the work of self-acceptance has been to insist on that same acceptance from everyone else — not for my own validation, but to be able to present myself truly, as I am, without the need to excuse or apologize for who I am. It’s been an essential part of this journey.

But that doesn’t mean that my “true self” always serves me best. An easy example of this comes from parenting. While I am very honest with my kids about who I am and what I’m like, there are always going to be moments when I am doing my duty to them as a father by presenting to them a person who is stronger, more assured, and wiser than I know myself to be. This isn’t to fool them, but to give them the care or the example they need in that moment. It’s not false, but it is a kind of mask.

And of course, there’s work, as I mentioned. As a communications professional, I can only achieve so much with creative-but-anxious, and I fail my employers if I shrug and say, well, this is who I truly am! Like an actor putting on a costume and reciting lines written by someone else, I have to put on my mask, the one that represents a character that is more confident and assertive than the real person wearing it.

This is a case of mask-as-augmentation, and I think it’s distinct from mask-as-shield. In a less self-accepting time, my masks were ways to hide who I was, to defend myself from being identified as different, to thwart anyone’s attempts to scrutinize my true self.

A defensive mask is always ill-fitting. It slips off too easily, or else constricts one’s circulation. The eyes don’t line up with the holes, or it makes it hard to breathe. To wear a mask defensively is to be in a constant state of disaster-aversion.

The relationship changes, I think, once we’ve come to accept our true face, when we take ownership of who we really are, for all our flaws. If we can get to a place where we have a handle on the whole of ourselves, strengths and weaknesses together, I think then a mask is not necessarily a shield or a disguise, but a tool.

If we mask with intention, we can thoughtfully and deliberately augment ourselves to better navigate different situations. When our natural state isn’t suited to a meaningful undertaking, we can choose the mask that supports our goals, adopting the specific qualities that help us get where we need to go, or build what we want to see come into being.

This is what we were learning in those first hours of that theatre workshop. Before the instructor would allow us to put on one of the masks she’d brought, and begin to inhabit — and be inhabited by — the character the mask represented, we needed to accept and master our own faces. We needed to take off our defensive masks, stop hiding from ourselves, and see our true faces as they really are.

To have used those masks as disguises would have been to miss the point. The goal must never be to disappear. Rather, the mask allowed us to bring something new into being. The mask was not hiding our true selves. Our true selves were giving life to the mask.

Accepting who we really are is just the start, not the end. Self-acceptance isn’t about stasis. It’s about taking responsibility for who we really are, and with intention and new understanding, finding the strength to see what else is possible. One way to find out is to try on a few masks. Who knows who might show up.

Neurotypicals Keep Feeling Things At Me

Paul Fidalgo

Here’s how Stephen Colbert helps explain how I, as someone with Asperger’s syndrome, am in a constant state of anxious bewilderment at this current moment.

The introduction of truthiness to the American lexicon by Stephen Colbert in 2005 was something of a cultural watershed, the moment when we all finally had a way to describe the semi-facts and quasi-reality we experienced consuming political punditry. Overwhelmed as we are today with outright lies and misinformation, the George W. Bush era of truthiness seems almost idyllic.

But remember that the driving force behind the phenomenon of truthiness was not the relative veracity of a claim, or even the convenient massaging of facts. Truth was not really the point at all. Emotion was. In coining this neologism, I think Colbert may have inadvertently prophesied our current dystopia.

“Face it, folks,” said Colbert as his “Stephen Colbert” character on The Colbert Report. “We are a divided nation. Not between Democrats and Republicans, or Conservatives and liberals, or tops and bottoms. No. We are divided between those who think with their head, and those who know with their heart.”

And here’s a kicker.

“Anyone can read the news to you,” he said. “I promise to feel the news atyou.”

Remember that.

I recently happened upon a piece from Psych Central by Ivy Blonwyn about her experience counseling a married couple wherein the wife was neurotypical and the husband was very likely an Aspie. Blonwyn writes:

We neurotypicals cannot begin to fathom how hard it is for Aspies to exist in a culture we dominate. We set the rules. We design society. We define social norms. Even something as fundamental as the rules for manners and polite conversation are foreign to an Aspie. They may behave ‘normally’ (as NTs [neurotypicals] define it) but that’s because they’ve memorised how to follow our seemingly nonsensical rules by rote. It’s a script for them and a senseless one at that.

For example, when Dan was breaking eye contact, waving his hands and gasping, I had been talking about a movie that quite interested me. A neurotypical who had not seen that movie as Dan had not would automatically realise the important part of the conversation is not the movie. It is how the speaker felt about it.

An Aspie on the other hand, cogitates on the movie (they haven’t seen) and having nothing to contribute to the subject of the movie, wants to advance the conversation to something they enjoy talking about. Hence the appearance of impatience and disinterest.

It never occurred to Dan that I was telling him about my feelings. He thought we were discussing the movie. ‘No, I was telling you about me’, I told Dan.

‘Then why didn’t you say that?’ he retorted.

As a neurotypical, I thought I had. It was implied. So obvious, that it never occurred to me to verbally express it.

But Aspies don’t make assumptions so hard-wired in NT minds that what we really mean is usually left unspoken.

I experience this kind of interaction all the time. Someone is telling me something about their day, something they’re going through, or something they experienced, full of details and observations, and I can barely maintain my attention. If what I’m being told has no direct relevance to me, is about something of which I have no experience myself, or is out of my control to do anything about, my brain desperately seeks to abandon it.

Particularly if the speaker is someone I care about, I make my best effort to be attentive and engaged, and I think I usually succeed. By now I know that to appear to lose interest is hurtful and offensive. I want to be supportive and useful to the people I love, so I do my best.

But I also don’t quite get it. Why would I want to know about the plot of a TV show you watched? Why would I want to know about a casual conversation you had with your coworker? How can I possibly be a part of a conversation in which I have no frame of reference? What’s the point?

It’s because the speaker is really telling me about themselves. They are not reading the news to me, they’re feeling the news at me.

And that’s just what neurotypical people do and it’s perfectly normal. For them, it’s necessary.

The propagandists of our current informational hellscape, such as Fox News, the president, and the great heaving mass of conspiracy theorists, all of them are feeling at us, and people are responding.

But even the “good guys” in the reality-based community, such as progressives and the otherwise-sane folks I follow on Twitter, are doing the same thing. They may be working with actual facts that are actually true, but the outrage-tweeting they engage in operates under the same priciple. They, too, are feeling the news at us.

And that’s why I can’t deal. When opponents of the president shame-tweet his latest outrage, I keep appending the question, “So what do we do?” No one ever answers. Not necessarily because they don’t know what to do (though I suspect they usually don’t), but because that’s not the point. They came to emote, not to cogitate.

My neurology is ill-suited for this moment. I do not find satisfaction or connection from this mode of communication.

If someone I love tells me how bad their day at work was, I will likely try and brainstorm solutions to each problem they faced, when that’s not at all what they wanted from me. They were feeling their news at me, not looking for answers.

I’m looking for answers.

For those I love, I will try to be better at accepting what they share with me, what they feel at me. I will try to better understand that they are trying to share themselves, their souls, not their raw data.

For everyone else, I will try to ignore the firehose of feelings, and seek answers elsewhere.

Spocks and Datas

Paul Fidalgo

DataSpock

SPOCK: He intrigues me, this Picard.

DATA: In what manner, sir?

SPOCK: Remarkably analytical and dispassionate, for a human. I understand why my father chose to mind-meld with him. There’s almost a Vulcan quality to the man.

DATA: Interesting. I have not considered that. And Captain Picard has been a role model in my quest to be more human.

SPOCK: More human?

DATA: Yes, Ambassador.

SPOCK: Fascinating. You have an efficient intellect, superior physical skills and no emotional impediments. There are Vulcans who aspire all their lives to achieve what you’ve been given by design.

DATA: You are half human.

SPOCK: Yes.

DATA: Yet you have chosen a Vulcan way of life.

SPOCK: I have.

DATA: In effect, you have abandoned what I have sought all my life.

 

– Star Trek: The Next Generation, “Unification Part 2” (1991)

For the socially alienated, such as autistics like myself, the characters of Spock and Data from Star Trek are immediately relatable. Not because of their lack of emotion, but because of their estrangement from their peers. Extraordinarily intelligent, yet unable to understand the motivations or the social and emotional needs of the humans around them. Though full members of their respective crews and fully equal members (eventually, for Data) of their adopted societies, they are nonetheless alone.

But apart from being non-human, the sources of Spock’s and Data’s alienation are quite different. Spock, genetically half-human and half-Vulcan, aspires to overcome the psychological weaknesses he believes his human side burdens him with. Data, the creation of humans, has put himself on a quest to exhibit the qualities of humanity as faithfully as possible. While he may be confused by human weaknesses, he nonetheless wishes to replicate them.

Framed this way, Data may be the more relatable to the socially alienated. Those with Asperger’s like me, for example, are obviously the product of humans, and live and work among other humans, but struggle to make meaningful social and emotional connections with the neurotypical majority. This is painful, and there seems to be no remedy. No matter how hard they try to ape the behavior of neurotypicals, it is just that, an aping. And yet they, we, pine for that connection. For belonging.

spockbrowSpock represents something that I would guess is less common, the socially alienated person who wishes to remain alienated, because to assimilate would be to corrupt oneself, to debase oneself. Surely there are those intellectuals and savants who identify with Spock in this, and surely they too experience the discomfort of alienation. But I suspect that is the Datas among us that are truly suffering from their estrangement.

To the normals and the neurotypicals, I have to assume that these two dispositions, the Spock and the Data, are more or less indistinguishable. Both exhibit as emotionally distant. Both are prone to say things that, to the normals, are considered inappropriate, offensive, or bizarre, despite innocent or benign intentions. Both invite varying degrees of pity or condescension from normals for what they perceive as naivete or “disability.”

For a Data, there is a constant pull toward the group, a tug toward the tribe. The Data will practice the mannerisms and idioms of the normals, and often fail laughably. For a Spock, the social distance is actively maintained. Rather than gravitate toward inclusion, they prefer to observe from a safe and less distracting distance. There is no attempt to do as the Romans do. To the Spock, the Romans are silly.

From my own point of view, to adopt the Spock approach would be a luxury. While I do not believe that a Spock-type never suffers in her alienation, she certainly suffers less. A Spock has already decided that there is little to be gained from full social inclusion, and little to envy from the normals’ mindset. What a relief that would be.

datadanceThe Data, however, is all too aware of the myriad ways she does not match up to her normal peers. She suffers from the humiliation of failed attempts to assimilate, and she suffers from her solitude. And unlike the character of Data the android, Data-types definitely experience emotions, often severely. It is a sisyphean way to live, except that everyone is watching and audibly commenting on how weirdly one is pushing the rock up the hill.

In a previous piece, I chose another Star Trek character as an Aspie-analogue, and reflecting on it now, it seems to fill a kind of middle-ground between the Spock and the Data. I’m talking about Odo. I wrote:

ds9odoThough he takes a humanoid form as best he can, no one thinks Odo, the changeling, really looks like them. He doesn’t understand humanoid behavior, but he does try to map it out in order to follow others’ motivations and how they lead to actions. He is impatient with the things that humanoids seem to find fulfilling and important, which to him seem pointless and wasteful. He comes off as mean when he doesn’t intend to. He craves companionship, but knows he can’t have it. And when it all comes down to it, when he’s tired of pretending to be one of the “solids,” he must — absolutely must — return to his bucket. He must resume his true liquid form, stop pretending, find total solitude, and rest.

If Spock and Data show us two poles of how the socially alienated cope with their weirdness, Odo shows us the consequences of all that work. What does the outcast do after all the failed attempts to commune, or after a day of navigating the incomprehensible absurdities of the normals’ behavior? What toll does it take?

Odo shows us. We must return to our bucket, or we dissolve.

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Hearing, Loss

Paul Fidalgo

It’s the late autumn of 2017, and I’m in Point Reyes Station, California for a two-week writers’ retreat. I was walking down a remote road, taking one of my regular strolls into town for supplies, a bit of exercise, and to take in the landscape, which was stunningly beautiful. The weather was nearly perfect, and being so removed from everything, cars and other pedestrians on the road were quite rare. I was alone and enjoying the movement and the environment.

The wind picked up a little and it whooshed deeply in my ears. You know the sound, the low thup-thup as the air pummels your earlobes. Maybe I hear it more than others because my ears are little on the bigger side, so they scoop up a bit more air.

Only something was off. The whooshing sound was there, but it was only coming in on the right side of my head. That was weird. I must have just happened to be facing in such a direction that the wind was hitting my head at that particular angle. So I checked.

I pivoted my head in different directions, while walking, while standing still, and nothing changed. I walked to different parts of the road with different landscape features; fewer trees, fewer houses, atop an incline, then toward the bottom. Still the same. I wasn’t hearing the wind in my right ear at all.

I snapped my fingers in both ears, and noticed no meaningful difference. I rubbed my finger along the surface of my earlobes and ear canals. In the left ear, I could hear the deep rubbing and rumbling sounds of the friction. In my right ear, I heard a faint and wispier sound, like something soft brushing on paper, at a distance.

I got out my headphones and attached them to my phone. I played some songs, and only listened through one earbud at a time. In the left ear, the full, rich sound came through that I had come to expect and enjoy from this particular pair of headphones. In my right, the bass and mids were, alarmingly, almost nonexistent, save for the high-frequency sounds of strings being scratched or plucked. All I heard were higher-end sounds, such as vocals, snares, and cymbals, only much tinnier, thinner, weaker.

Finally, I tried listening to a voicemail to see if I could hear a phone call. Again, the expected normal sound of the voice came through the phone’s little speaker into my left ear. Putting the phone up to my right ear, the voice sounded like it was coming from a tin can stuffed with cotton. I could hear the voice, but barely.

This was unmistakable. I wasn’t being paranoid. I had lost hearing in my right ear.

*

It’s the spring of 1994 in Absecon, New Jersey. I’m a 16-year-old junior in high school, in an exurban basement. It’s the house of one of my friends from marching band, Chris, and by way of some now-forgotten confluence of agreements and compromises, I have formed a crappy little band with him and two other friends; Chris on drums (talented thrash metal devotee), my best friend Rob on bass (had never played, and was borrowing my dad’s sort-of vintage bass guitar), me on lead guitar (I had no business being a lead guitarist but I could play chords and learn songs by ear relatively easily), and one guy I met through Chris, Corey, our lead vocalist, a kind of Axl Rose/grunge type (and who was tone deaf).

I told you it was a crappy band.

Nonetheless, it was my band, and my sole outlet for playing with a full set of musicians on a few songs I really liked (and some I really didn’t, but like I said, agreements and compromises). In the year or so we played together, I don’t know that we ever got to the point of being “good,” but we did manage to scrape together a handful of songs that we could enjoyably hack our way through. It was fun, at least some of the time.

On this occasion, we’ve been a band for a few months, and Corey and Chris have brought with them a friend of theirs, another guitarist who was straight from the Metallica/Megadeth school of metal. He had the requisite long hair and patchy teenage facial hair, including that mustache so many of those guys wore back then that usually signaled to me, for some reason, that I should be wary of them. I don’t remember his name, so let’s just call him “Patchy-stache.”

Apart from having some obviously advanced skills in metal lead guitar, Patchy-stache also brought with him something else we didn’t have: a giant-ass stack of huge amplifiers. For our usual rehearsals, I hauled back and forth my dad’s ancient Vox tube amp and a very small beginner’s amp that I’d gotten as a birthday present. Corey had a decent amp and PA for his vocals and occasional guitar playing. With what we had, we could barely hear ourselves over the astounding pound of Chris’s drums. That guy did not mess around behind that set. Usually I wore earplugs to protect my hearing, though not always. I was afraid it made me seem like a wuss.

So here we were in this small space, enclosed in concrete, with our usual collection of aspirationally loud shit. And now here’s Patchy-stache with his menacing obelisk. When he played through it, the obelisk emitted these teeth-rattling, piercing riffs, filled with stabbing licks and needle-like harmonics. It was painful. I of course didn’t know at the time that I was autistic, and already wired to be overwhelmed by stimuli like noise, and I didn’t have my earplugs in.

But I dared not show my discomfort. Checking for the other guys’ responses to this sonic assault, they seemed totally unfazed. I tried to indicate that this decibel level might be a bit too much with some humorous gesticulations of my ears exploding. It got me some smirks, but nothing else. It was really quite awful, but if there was one thing I found more excruciating than a storm of stimuli, it was the threat of social rejection, of being called out as lesser than the others. So I endured.

That night, I of course had ringing in my ears, like anyone would after a loud concert or something. But in addition to the ringing, there was also a low humming sound in my right ear, which happened to be the ear that was more directly facing Patchy-stache’s amps. It had clearly taken the brunt of the abuse.

The next day, the ringing had left both of my ears, but the hum remained. And it stayed. Forever.

*

I got used to it. At first it drove me nuts, and I had trouble sleeping. But I think it was only a few months before I’d learned to manage it. When there was sufficient ambient sound, the humming almost “turned off.” It weirdly just seemed to stop when there was enough sound around, not just fade to the background to become less noticeable. Whether that’s true or not is kind of academic, since tinnitus (the name of the condition) is mostly about the brain responding to a trauma. It’s a kind of illusion, but also not.

I’d learned to sleep by having music on at night, and that became a years-long habit regardless of my tinnitus. Throughout high school and college, most of my music listening happened in bed, where I’d fantasize scenarios in which I and my friends, all of us now musical virtuosos, were the ones performing these songs. I loved those fantasies. Now they just hurt, but explaining that is for another time.

Going into full adulthood (assuming I have actually done that), the hum became a total non-issue. It was always there, and I was aware of it, but it no longer troubled me at all. It was just part of the sound of being alive.

The right ear remained sensitive, however, so I’d shrink from blasts of sound directed at it. I’d had a few scares after, say, acting partners or overexcited children would inadvertently scream in my ear, causing me acute physical pain, but it always subsided and things went back to normal. And if the stabbing that Patchy-stache’s amps perpetrated on my ear had reduced my hearing at all, I couldn’t tell. For over two decades, I enjoyed the full scope of stereo sound, and as far as I could perceive, heard equally well out of both ears.

I didn’t appreciate it like I should have.

*

It’s the early autumn of 2017, a few weeks before I’d go to the writers’ retreat in California. My sinuses feel a little plugged up, which is not at all unusual for me. The usual pressure, the usual feeling of crud in the back of the throat, but it’s all very mild. I don’t even really notice it.

What I do notice one evening is my tinnitus. As I said, I have a baseline awareness of it as a matter of course, but I don’t often “notice” it. Well, now I did, a lot. The subtle hum was now blaring in my ear, several orders of magnitude louder than usual. Though this was unpleasant, it wasn’t totally surprising. Once every long while, some nasal or sinus related thing will make it sound a little more present in my head, and it always passes, returning to normal.

But jeez, this was really quite loud.

Days went by, and it wasn’t getting any better. If anything, it was getting worse. The sound was even louder, producing a sensation that was kind of like something pressing against my face. It felt like I had my head flat up against a some sort of enormous air compressor, subtly pushing into me. Or like the hum of all the electricity in the world was behind a wall to which my ear had been affixed with superglue.

My doctor said it was probably just a sinus infection affecting the existing tinnitus, and that would hopefully clear up with some antibiotics and decongestant. This felt particularly urgent, given that I was about to head off to California for my fortnight of writing. The last thing I wanted while trying to enjoy the peace of staring out over the San Andreas fault was to have the sublime state constantly interrupted by the jet engine in my head.

Unfortunately, by the time of my trip, the problem still persisted. The sinus treatment had no effect. I had some hope that maybe the shifting air pressure of my upcoming flights might sort of pop the problem out. But, of course, no. So I just had to cope.

A few days in, I noticed that I couldn’t hear the wind in my ear. A couple of days after that, the sound amplified yet again, out of nowhere, to the point that it physically hurt, causing me to experience a little vertigo. I saw a doctor in town and was prescribed some ear drops as a kind of shot in the dark, which also did not help.

Shortly after my return home, I saw a couple of specialists and had my brain scanned. The audiologist was the only one with any news, and it was not really news. I had indeed lost much of my ability to hear the low and middle frequencies of the sound spectrum in my right ear, and the tinnitus was my brain’s misguided attempt to investigate and compensate for the loss. Because they were happening at the level of the brain and inner ear, both were almost certainly permanent.

Both are permanent.

*

I have lost very little, really. I’m not by any means disabled. I’m not even a good candidate for a hearing aid. Someone whose pinky was cut off in an accident will struggle far more with their loss than I will have to with mine. With all the things that a human could suffer, with all the debilitating diseases, injuries, and accidents of fate that could befall a body, this doesn’t even approach the status of “big deal.”

But it’s still a loss, isn’t it? A little one. And sometimes little things matter a whole lot.

There is a space in the constellation of sound that one of my ears won’t ever experience again, not meaningfully. It’s just gone.

When I’m working on a recording for one of my songs, I’ll no longer be able to rely on my own senses to find the right blends and mixes of sounds that will bring the music to life. One side of my head will be missing way too much of it. It would be like directing a play with the lights dimmed on half the stage.

(I guess I could produce everything in mono. I mean, the Beatles did for a while.)

The other ear is fine. The full sonic palette remains available to it. But both ears, of course, will now only get worse as I age, because that’s what happens to human bodies. More colors will dry up or be scrubbed off my palette.

And then there’s the hum. Or rather, the droning. That’s a new reality that must be accepted as well. I became so accustomed to its first manifestation over the past 23 years, that I had the luxury of giving it almost no thought at all.

Now it’s a different story. This new, louder sound is always there. Even when I’m distracted by other sounds, ambient or otherwise, I remain aware of the droning. And because it pulses erratically in tone and intensity, it’s as though it’s not satisfied to merely exist. It’s like it wants my attention. It wants me to feel menaced by it.

It might yet become tolerable or even of negligible concern as the years go by. I kind of doubt it.

But I’m fine. As far as da-to-day obstacles, the hearing loss just means I’ll have to say “what?” more often, which will at times get a little frustrating for me and the people around me, and that’s really nothing. The droning, well, that will bother me exclusively.

Regardless of the relative severity (or lack thereof) of the loss, I’m grieving it. I’m sad and angry about the fact that I’ll never experience music and sound to the full, rich extent that I once did. That I so loved. That filled me up and saved me. Most of it is still there, but it will never be the same again. And I’m going to mourn that.

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Writing Without a Mask

Paul Fidalgo

Clearly, there’s something I’m not doing right.

It is my third full day at the writers’ refuge and I am researching my article’s topic, the muscles in my neck and shoulders simultaneously taut and compacted such that I find my range of motion constrained.

IMAG1268.jpgI am in a veritable paradise, with astounding natural beauty, a sublime and comfortable writing environment, surrounded by books and supplies and various corners and nooks into which I can settle and work my craft, smart and friendly people around who are both few in number and fully understanding of my need for solitude, but also interesting and enlightening when I do get into conversation with them, and two weeks to pursue this project in any way I please. Oh, and I am right now looking at a different tectonic plate than the one on which I stand. Seriously, it’s right there. Also, deer aren’t afraid of us, and they hang out and eat apples. Oh oh oh and there’s a hawk that flies around my part of the house, sometimes so close I can look into its eye.

And I’m lost. Whereas I had begun this retreat with a lot of enthusiasm for this project and eagerness to get it going, I’m now overwhelmed by the breadth of the topic, unsure of the degree of depth that is most appropriate, ignorant of the best practices for this kind of work, anxious about the unwise use of my time, and generally feeling beneath the task. I even think I broke the electric kettle in the kitchen.

I am being treated to more privilege than billions of people will ever experience, and here I am, angsty. I hope I at least get credit for recognizing the absurdity of my own hangups.

I know there is no right way to go about this. That’s really the point of this retreat, to give writers the space and time to take things at a pace and within a structure that suits the writers themselves. I’m so accustomed to stop-and-start times, specific formats and styles for particular written products, and an established approval process, that this freedom, this liberation, is bewildering.

But now that I think about it, I suspect that what’s really going on is very similar to the distinction I make between performing as an actor on stage in a play and giving a presentation on a real-world topic for my job. There is too much of me riding on it.

Let’s begin with the theatre/work-presentation distinction. Upon learning of my autism/Asperger’s diagnosis, many people who know me from my theatre life are in disbelief. How can I feel anti-social, afraid of human interaction, uncomfortable in crowds, and oversensitive to stimulation and also thrive on stage? It’s a perfectly reasonable question (though I bristle at the skepticism of my diagnosis that it implies), and one that took some time to for me to understand myself.

When I’m performing a role in a play, there is no question as to what I will talk about. My words are predetermined, and not just for what I will say, but when I will say it. The play will also have been blocked, meaning that where I am in space will also have been set and rehearsed well in advance. Through the rehearsal process, it will be determined how I will say all these words, how I will conduct myself physically, and even how I will imagine my character to have reached those various decisions. There is always room for change, iteration, adjustment, and depending on the production, sometimes even improvisation, but the structure is always there, and it is firm. Most importantly, I am not me. I am someone else. Not literally, of course, but there are sufficient layers between me and the audience (and even between me and my fellow actors on stage) that the excruciating discomforts associated with my autism are, if not wholly eliminated, sufficiently dampened. The role is a mask.

But take me out of the world of the performing arts, and into the world of speaking on behalf of an organization or a cause, and those layers are stripped away. If I am, for example, expected to give a talk about communications work, I know I will be utterly exposed. Not only can I not play a character (try as I might), but the “real me” must also lay bare whatever degree of expertise I have, or claim to have. “I’m Paul, and this is what I know.” My words, my physical comportment, my inflection, my gestures, and even the very contents of my brain are open to public scrutiny. There is no mask. That is unbearable.

So let’s apply this basic idea to writing, and, in a way, the dynamics flip, with two different areas of my life producing opposite results. As I mentioned, my writing for work is routinized with established formats and processes. As with a public presentation, I am the one producing the words, but I am rarely writing them in my own voice. In a very real sense, when I write press releases, emails to supporters, and newsletters, I am writing “in the character” of the institution I work for. I’m playing the role of my organization. My job title and the institution’s logo, they are my masks. Those layers are sufficient, once I am settled into the given employers’ needs, processes, and, importantly, voice.

Here at the refuge, I am attempting to write a long form magazine article on a topic of great interest to me. But I am not writing or “reporting” it in the voice of my institution, nor in the voice of the publication in which it will appear, as one might do with a straight-news newspaper article. With this project, the speaker is me. The facts I present, the sources I’ve chosen to mine, the people whose perspectives I’ve sought, the conversations and quotations I’ve initiated, the things I’ve chosen to omit or gloss over, and the conclusions reached, they’re all me, in my own voice. Whatever is wrong or unsatisfying or weak about the final product is a reflection of me, with no mask to hide behind. That, I tell you, is dizzying.

Now, one might then wonder, hey Paul, you seem to have no trouble opening every one of your precious little wounds and examining them in detail on this little blog of yours. Too true! And I’m not certain why this kind of writing that I’m doing right now doesn’t make me feel just as vulnerable. But I suspect it’s because I’m rather sure of the topic at hand, that being myself. Even if I’m completely deluded about what is going on within my own tempestuous morass of a psyche, there’s no one else in existence who can claim a greater level of expertise or comparably intimate knowledge. There is relative safety in that. Whatever the reason, exposing my inner thoughts and struggles is far less perilous than claiming the authority to expound upon an external subject.

So perhaps a healthy approach, and even a more fruitful approach, is to lean into my own inclinations and preferences, and tackle the subject of this project through my own lens. In other words, rather than present facts and an argument impersonally, maybe I can chronicle my own experience of the subject as I absorb it, and recount for the reader my intellectual journey to better understand it. The cliché is that one ought to “write what you know,” but I really don’t know much. So maybe the best thing to do is to write what I am coming to know – of the project’s subject and of what it comes to mean to me personally.

Okay, maybe I can do that. Take it easy now, oh knotty neck muscles of mine. Let’s get a few deep breaths in. Let’s take in the vast scene of nature around us and indulge in its otherworldly peacefulness. Let’s let the brain soak up what it’s learning and let the new information bounce off the thoughts and values that are already there.

And then, let’s write.

(And pay for the kettle I broke.)

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A Sore Thumb, a New Face

Paul Fidalgo

I’m on a plane to California, about to spend two weeks at a refuge for writers, a retreat for which I was nominated by a colleague who had himself been a resident as part of a fellowship for writers in the freethought community.

Being selected for this wasn’t just a surprise. Certainly, I went through all the thoughts of “what an honor” and “what a wonderful opportunity,” and they are very sincerely felt. But my dominant attitude is, “Oh, dear, they’ve made a mistake.”

Wait, this isn’t the usual imposter-syndrome lament. Let me go at this sort of orthogonally. As I was preparing for this excursion, I figured I ought to get at least a couple of new shirts or pairs of pants, since so many of the nicer items in my already spare wardrobe are looking worse for wear. As poked around the men’s section, haplessly, I found myself fixed to an idea of what a “real writer” is supposed to look and dress like. It wasn’t a fully conscious thought, just something I became gradually aware that I was aiming for as I shopped. Despite the anxiety this caused me, whatever that writerly image is or was, I’m fairly certain I did not achieve it. I’ll come back to this is a bit.

This retreat will take place in what appears to be a big, gorgeous house in a ridiculously picturesque area of Southern California, overlooking a fault line I think, and yes, the weather is supposed to be heavenly while I’m there. Apart from a couple of formal meet-and-greet meals held by the proprietors, writers are otherwise left to themselves to work on whatever it is they’re working on. When not writing or sleeping, we’re encouraged to take advantage of the local restaurants, outdoor activities, and I think there’s even a tennis court.

I’ll be in residence with two other writers, selected, I assume, through different means, since my spot is specific to those writing about freethought and secularism. These two writers, my soon-to-be housemates, are very accomplished, particularly for their ages, as I suspect they are both a good decade younger than me, though that’s just a guess. One is an award-winning novelist, the other a journalist with bylines at prestigious outlets and publications. Me? I’ve written a whole lot of press releases and email newsletters. I have a personal blog that more or less no one reads. I have a blog for work where I round up news stories and make dumb jokes. That’s…kind of it. And I’m gonna be 40 soon! I mean, I also now host a podcast that is listened to by a few thousand people, but I was selected for this retreat well before that got started. So what am I doing here, on this plane, heading for this gorgeous place and joining these amazing people?

I’m not seeking validation. I mean, I usually am, but not here, not for this. I actually do think I’m a pretty good writer, so my discomfort and foreboding aren’t due doubts about my skills. I suck at many, many things — but I’m fairly sure I can write. 

But I also know I don’t have the resume, the credentials. For the vast majority of my public writing, there are several layers separating me from the material. I am writing in the voice of an institution, not my own. I am rarely writing in the first person, or from my own personal perspective at all, but from the point of view of an organization or one of its leaders. Even were I to grant that my work was uncommonly exemplary, it wouldn’t even begin to approach the prestige or cultural significance of what my fellow residents have achieved with their work. My predecessor for this fellowship who nominated me to succeed him is also incredibly accomplished. Holding a similar position to mine in his own organization, he has been a well known and highly respected leader, not just in secularism, but in political advocacy in general. He’s written books, academic articles, and has had a leading role in the advancement of the cause for which he fights. He’s not only qualified to be at a writers’ retreat like this, he’s overqualified and overdue for even greater honors.

Oh but hey, I’m kinda funny on Twitter!

Okay, well, they knew all of this when I was nominated and selected. And they didn’t hedge their invitation with anything like, “Well, you don’t quite have the pedigree we normally look for in our residents, but your friend seemed to think you might be worth a shot.” They were as warm and welcoming and excited about my arrival as they would be for anyone else. (Or at least they made it seem so, which is almost the same thing. As a parent, I know all too well the emotional and psychological cost of feigning enthusiasm.)

Remember the clothes shopping? Half-consciously, I was focused on looking the part of what I think they think a real writer is supposed to be. I didn’t want them to think of me as a weird outlier, an exception to their usual standards. Just as I have always done as an unknowing-autistic for all of my life, I was aiming to pass.

In attending this retreat, I am entering a world that is both aspirational and alien to me. I have always wanted to be taken seriously as a writer, a thinker, a creator. I’ve been on the cold street, looking in through the window at that society of the humanities, the creative class, the intellectuals, feeling simultaneously compelled to become one of them and certain that I could never, ever truly belong. So I never stood close enough to that window to fog up the glass. Someone might have noticed me.

In my mind, this is a world of people with deep, varied, and rich life experiences, who have achieved greatness in their fields, who have been intellectually and creatively ahead of the curve since toddlerhood. And now, they write thinkpieces and longform articles and nonfiction books and novels and poetry, and are rewarded with respect, admiration, income (I assume), a place in a network of brilliant and thoughtful people seeking to learn from and collaborate with each other, invitations to speaking engagements, conference panels, NPR interviews, generous fellowships, and, of course, retreats.

The stereotype in my head gets richer still! They love nature and trekking about in it. They also love the city and its unrelenting stimuli. They love fancy and eclectic restaurants. They also love — really love — dinner parties, where they drink and laugh and eat exotic food and swap stories of their adventures and the many, many books they’ve read.

I’m not one of these people (whom I’ve mostly made up). I don’t like dinner parties or almost any kind of party. I don’t like exotic or unfamiliar food. Hell, I don’t even really like eating at all. I wear silly T-shirts and ratty jeans, I read very slowly, and I am averse to being outdoors, what with the sun and bodies of water and insects and all that. My education has been modest and not culturally rich, and both my acting and nonprofit communications careers have been fairly static, owing in large part to my own reticence to do what is necessary to advance socially and professionally. I’m an awkward little man with Asperger’s and a lifetime of experience considering myself broken, failed from birth, only achieving what I have by dint of happenstance and people making exceptions for me. I am the sore thumb. Humiliation is my default expectation.

But here I am on this damn plane. Here I go, nonetheless, onto alien soil. My best hope would be to go there, to *be* there, as me, unapologetically, and perfectly content with myself as I am, without crossing the line into being ungenerous or unaccomodating. If I am truly not “like them,” then so be it. They asked me to come, and this is who they get. It’s not like I’m going to do any damage or hurt anyone’s feelings. I just might not be the usual thing, or what they expect.

I want it to be okay to jut out a bit, not like a sore thumb, but simply to stand out as a new face. The face of someone who thinks and acts a little differently and has something meaningful to offer. Someone who, if he’s not liked or appreciated, is okay with that too.

I suppose I’ll find out if this is possible, at least to some meaningful degree. I’ll enter that world in a few hours. I guess we’ll see what things look like at the other side of a fortnight.

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Autistic Alienation: Not as Simple as Intense Introversion

Paul Fidalgo

One thing about Asperger’s/autism that I think is hard for neurotypicals to understand, and is also hard for me to come to terms with, is that as an autistic person, my attitude toward socialization isn’t merely binary. The introversion instinct is incredibly strong, and it’s true that I can’t heal, rest, or reengergize without relative solitude. But that doesn’t mean I therefore never want human contact.

It gets even more complicated than that, though. If it were as simple as “I like to socialize a lot less than most people, but I do want to socialize a little,” that’d be relatively easy to manage. You just keep social interaction to a manageable level, whatever it happens to be For the individual. But here’s the thing: even human interaction that an aspie might affirmatively seek out is still fraught with discomfort, self-doubt, anxiety, and pain. It’s still exhausting, and sometimes dispiriting, unless it's particularly fulfilling in some way.

So when an introverted aspie is avoiding other members of his or her species, they may also be experiencing, at an atavistic, lizard-brain level, a longing for human contact, to feel assured that one still “belongs” in the tribe. And even when that validation is achieved in the most positive and affirming of scenarios, it’s still incredibly difficult.

This is the picture: Imagine a human being whose brain has developed differently than almost everyone they know. They may be incredibly intelligent or talented in some way or other (or maybe not!), and have a great deal of thoughts and feelings they desperately want to express and share. But the agony of submitting oneself to the evaluation of normal people, even in the most banal and benign circumstances, is often too much to bear, or at least too uncomfortable to make it worth the effort. When they do take the leap and try to mix in normal society, the energy drain is rapid, the stress is damaging, and the tiniest faux pas (real and imagined) is burned into their memories as scarring humiliation. So this human being, full of life and solitary, feels lonely, while determined to remain alone. Until the loneliness becomes too much, such that a new attempt is made.

I miss having a set of friends that I was comfortable with, that I could develop routines with, and rely on for that base-level validation that I was in the right species, that I had a tribe from which I was in no danger of being ejected. I have had that. A lifetime ago.

I don’t have that now, and most of my experiences after my life in professional theatre has been characterized by anxiety over being banished from whatever tribe to which I submitted myself, or else having no tribe at all, and cautiously yearning for one. (And not knowing that I was autistic in the first place.)

It’s not just that we want to be alone. But it’s the only way we know we can safely be.

Excruciating Information

Paul Fidalgo

A fellow autistic blogger whose work I deeply admire pointed me to this short little PSA video from the UK that she said was revelatory in how it reflected her own experience. And so it is for me.

Particularly when it comes to the Asperger’s part of the autism “spectrum,” I think people – including actual Aspies – tend to cling to the idea of social awkwardness and alienation as the defining traits. But using this stereotype as definitive ignores what I think is one of the prime causes of that awkwardness and alienation, and that’s the difficulty we have in processing stimuli with the same capacity and at the same rate neurotypicals, and that difficulty manifests not just temporally – it’s not that we just have to sit there and ponder for a few moments and then move on – but physiologically. It’s painful.

The example you’re most likely familiar with is that of the noisy, crowded room, say at a bar or a party, an environment that can be incredibly uncomfortable for many of us. I usually see it described in terms of the noise level and the variety of voices coming from all directions emitting sound. But that’s just one factor. There’s the visual, of course, as one is surrounded by faces and bodies and objects and movement and nonverbal expressions and cues. And there’s also the tactile, the feeling of one’s clothes, the floor beneath you, the furniture you may or may not have your weight on, the food you likely have strong aversions to, and quite especially the temperature. And that sound? It’s not just the decibels, but the information contained in the voices, what they’re actually saying in the chit chat, in the music blasting, and on and on.

That’s a lot of information to process all at once, creating palpable discomfort, anxiety, and misery in a context that demands a certain kind of relaxed behavior.

There are so many other ways this comes up in my life. I can’t for the life of me orient myself in space, for example, so whether we’re talking about driving directions to places I’ve been many times before, or just navigating the interior of a building with more than four rooms or so, I’m constantly bewildered. I can’t process that information at a rate that makes the directions useful, nor can I process the information without extreme discomfort and crippling anxiety, which only makes the processing harder.

If I get an email at work that is more than a few sentences, I know I will have to relax my brain and read it carefully a few times because too often I have replied or executed instructions based on a misreading of the text or with significant pieces of data missing from my comprehension. That screen full of words begins, in my eyes, as white noise, a garble of glyphs in pixels, especially if it’s part of a threaded conversation. And again, that doesn’t just spark confusion and compel me to take my time, it hurts, it’s dizzying. (So yes, when I read books, I’m pretty damn slow about it.)

So I understand this young girl in the video. That was me at that age. These otherwise innocuous, benign interactions that a person has throughout their day, these humdrum travels from point A to point B that nonetheless feel perilous, these unanswerable questions launched at you and meant as small talk, the torrent of trivialities that threaten to drown you even when you don’t know why you’re expected to care, the inadvertent offense or problem you cause as a result of your efforts to shield yourself. It’s too much. Even today, though I fake it much better than I did then, it’s too much.

The world obviously isn’t set up for autistic people to succeed. It’s a miracle so many of us have. And the thing is, I don’t think it would take so much for the rest of neurotypical society to give us a little space. If only it weren’t so excruciating for us to ask for it.