Who Am I?

Autistic with Complex PTSD in a Global Pandemic

Posted: March 17th, 2020 | Author: | Filed under: Autism | No Comments »

As this crisis unfolds, I find my mind and body both feel in this somewhat eerie, staticky space. It’s a familiar feeling to me, though something I felt more frequently in the first half of my life than the latter half. I’m beginning to recognize some of the ways my autistic childhood experience intersected with my unreliable and often traumatic home experience to produce my particular defenses and coping mechanisms.

My childhood autistic experience was awful. At any moment, any interaction with any person, peer or adult, could go badly wrong up to and including verbal and physical assault. It wasn’t some group of bullies the way most people describe experiences of bullying. My friends sometimes abruptly turned on me. I’ve related some of those stories in the past. The first time I was placed among peers in a less structured context in kindergarten, it got so bad I had to be moved to a different school. And while some adults tried to be helpful, others were a nightmare. I guess they found me threatening in some way? I’m not sure. And that experience followed me everywhere we moved, and we moved frequently, and in every group I tried to join. I know now that I could not see and interpret the social cues that indicated things were beginning to go poorly. But to child me the world of other human beings felt wildly unpredictable and dangerous. It’s why I worked so hard to “fix” myself as I’ve described in other posts. It’s what drove and formed my will and determination.

That broader autistic experience merged with a home life that by any measure was wildly unpredictable and sometimes overtly abusive and neglectful. My earliest memories are deeply traumatic and that never really changed. Every time I began to feel like some sort of stability might be developing at home, the rug was pulled out from under me again. That’s how a child ends up with 9 out of the 10 adverse childhood experiences in the original ACEs study. They don’t happen all at once. That number represents an accumulation of trauma and adverse experiences over the course of an entire childhood.

In that light, I’m not surprised that a number of the symptoms I have managed, though not necessarily managed well, my whole life meet the criteria for complex PTSD. I never feel safe in no small part because my body and mind don’t know how to feel safe. I don’t even really try. I just try to keep my environment as managed as I can. And for me that often means trying to appease and calm the people around me. I need and desperately want connections to other people. Yet I struggle to maintain those connections. And people are also often the greatest source of fear for me.

My trauma therapist called me an empath the other day and it feels right, I guess. But I can’t even parse my own flood of feelings much of the time, much less everything I pick up from my environment. It often feels more like an undifferentiated wave or an inchoate mass than individual emotions. I sometimes handle it by dissociating from my body and even dissociating more or less completely. There’s a part of my mind that seems to be good at walking me through actions I have to take even when I’m not exactly present. It’s hard to describe, but I think part of it is because I never had the safety to fully dissociate even when what I was experiencing felt overwhelming.

All that combined to produce my particular ways of coping with the world. I’ve described elsewhere how, as I learned to feel and interpret my body in therapy, I recognized my default state was not calm. Rather it was more like what people often describe as anxious. As I’ve explored it more, I’m not sure that’s accurate. I think fear is a better word. My body is always somewhat afraid and that can quickly ramp up to terrified, usually when anger or similar emotions are directed at me or I have no idea what is happening with the people around me. I can tell things are ‘off’ but have no idea why or if it’s because of me.

And that, in turn, means my mental horizon is always pretty low. It’s why I struggle with questions about things I want to do, dreams I have, and plans for the future. I largely never developed those except in the vaguest of terms. My horizon starts with what I need to do today. Then raises some to keep track of the things that are coming in a week or month. Then I have some sense of demands beyond that point, but they are more tenuous and I don’t spend much time or mental resources on them beyond noting their existence. I place a great deal of emphasis and attention on what the people who depend on me need me to do.

And that means I don’t experience fear and anxiety the way many people seem to experience those emotions. I hardly ever catastrophize. That requires thinking about the future and I just don’t do that very much. I can spend a lot of mental energy on past interactions, but what I’m doing is trying to understand them so I know what went wrong and how I can repair it or at least avoid future recurrences.

And when a crisis does hit, my mental horizon narrows even further. Under duress, it can narrow as much as looking around, deciding what I need to do or can do right now in the moment, focusing my energy to do it, then looking around and figuring out what the next thing I need to do is. It’s why I cried during Anna’s song, “The Next Right Thing“, in Frozen 2. That song captures how my whole life has felt.

I think that’s why people have called me ‘good in a crisis’ or have commented how I seem to stay calm when everyone else is freaking out. The reality is I’m never truly ‘calm’ and ‘crisis mode’ is more or less my normal. It’s simply a matter of degree for me. I can be overwhelmed and when things break for me it’s not been pretty or pleasant. But up to that point, I seem focused and in control.

I don’t want to give anyone the impression it’s some sort of calm, Zen-like state. It’s not. Rather, I’ve lived every moment of my life waiting for the metaphorical “other shoe to drop” with all the hypervigilance, tension, and struggle that implies. It does mean I often process the shock when that unexpected shoe does drop faster than those around me and move directly to action.

Living in a state of constant high alert definitely impacts my relationships, my health, and my well-being. It’s likely why I have such low motility in my intestines, which led to my health crisis and almost death a few years ago. I tend toward silence when I have no idea what to say, which people often misinterpret. And living every day in survival mode is exhausting in ways I can’t describe. It’s why I haven’t really been attached to being alive since I was nine years old, at least on my own behalf. I learned to keep that under control and have many tools to manage it, including always keeping in the forefront of my mind how much others do still depend on me. But it adds to the pile of things I manage every day of my life.

Nevertheless, it does mean when a crisis of any size hits, I’m as mentally and emotionally prepared as anyone can be. I absorb all the information I can and my autistic brain systematizes it for me. Things that don’t fit stand out. Reliability has a certain mental feel to it for me. I’ve always appreciated the way my brain does that for me. I don’t know how I would get by without it. I figure out what action I can take right now. I do that and start figuring out the next action required. Rinse and repeat.

I suppose that’s helpful? But honestly, I think it would be nice to feel safe sometimes. I’m so very, very tired.


Finale – Week 7 of #TakeTheMaskOff

Posted: September 3rd, 2018 | Author: | Filed under: Autism | Tags: , | Comments Off on Finale – Week 7 of #TakeTheMaskOff

This week marks the end of the official social media campaign for #TakeTheMaskOff. It does not mark the end of autistic engagement with a world where we are more often rejected than accepted. I have no story of personal impact from this campaign. I’ve perhaps thought more deeply about the topic areas, but I’ve had no revelations or dramatic changes. I did not expect any such experience. I’ve been surviving in this world for 53 years. My tools and techniques are evolving and improving, not transforming into something radically new.

Rather, I’ve chosen to add my small voice to this campaign in the twin hope that non-autistic or allistic readers might understand our experience at least a little better and that other autistic people might feel a little less alone. I felt so alone and so different from everyone for so very many years I know how hard that is to bear.

I have no expectation that our world will suddenly change, but I have to believe it’s possible to improve allistic understanding and acceptance of our differences. No matter how hard we try, we can never bridge the current gap alone. If we could, we would. The “best” we can currently achieve by current measures, our so-called “optimal outcome” boils down to nothing more than not being observably autistic to a removed third party who is not directly engaging us. Even that degree of masking, desperately trying to make all aspects of our movements, body language, expressions, tone of voice, and words conform to the always incompletely understood expectations of others, is never perfect. I know because I taught myself how to do it.

I could never, however, look and act “normal”, whatever that may be. And don’t tell me that there’s no such spectrum as “normal” and that everyone feels different and isolated at times. My therapist, who sees many such allistic people, tried to say that. And it’s simply not true. I understand that nobody can clearly define those boundaries of “normal”, those things which fall in the range of acceptable variation, versus the things that are not. I’ve often wished somebody could because I felt if I actually understood the rules, I could find a way to more closely adhere to them. But those rules exist in every human culture. And they are enforced, often without thought or intent but merely in reaction. Most people absorb them over time, especially as young children, so the rules all seem obvious and automatic. The social rules and nuances feel “natural” to allistic people. I didn’t and don’t simply absorb them and my “natural” behavior and reactions do not conform to them. I had to learn the rules through observation and experience, mostly as a child, as best I could. And violations of those unspoken, unwritten, and often unacknowledged rules mark you as less than human to other people.

Autistic masking is about avoiding harm and seeking acceptance. We all seem to have stories about both. I’ll mask less when I am loved, or at least not rejected, when I don’t. I’ll mask less when I can do so and still be safe. I’ll mask less when the world of people surrounding me grants me the freedom to be more visibly and outwardly myself, whatever that might be.

I’ve masked my entire life to one degree or another, or at least as much of my life as I can recall. I’ve worked at it semi-consciously, deliberately, and systematically since I was nine years old. That means I have poured energy and effort into masking for 44 years now. The only me I know is the one trying, and usually failing, to find a place among everyone else.


Coping Strategies – Week 6 of #TakeTheMaskOff

Posted: August 27th, 2018 | Author: | Filed under: Autism | Tags: , | Comments Off on Coping Strategies – Week 6 of #TakeTheMaskOff

The last several weeks of this campaign have been challenging ones for me in different ways. This week’s topic is more positive and lighter, but it remains another difficult subject for me. The focus is supposed to be on things that help you mask less, but I don’t mask less and right now I have no plans to mask less. I believe I would have to feel safer and more accepted than I do before I could risk it. My entire lifetime of experience is constantly running in the background of my mind, telling me how people react when my observable behavior or social responses stray outside the limits of “normal” variation. Even today, when my mask slips the reaction is at best confusion and more often negative in some way. I try to correct those reactions, but once people have constructed a narrative about my feelings, thoughts, and intent based on their own interpretation, it’s really hard for me to reverse it, especially since I struggle understanding how they have perceived me. I go from managing things fairly well to completely lost in a heartbeat.

I’ve noticed one odd thing since my diagnosis two years ago. Everyone seems to assume my ability to mask, to read and understand the reactions of others, however imperfectly, and manage my own behavior and responses are strengths. If I were also intellectually disabled, as is the case for many (the rates I’ve seen range from 40%-60%, though a more recent study suggests the true rate may be 15%-20%) of my fellow autistic human beings, I would not be able to hide my autistic traits. It’s true that I have the ability to hide in plain sight. And it’s true that there are situations where that has been very advantageous, notably employment. But the few studies I’ve seen that have included well-being in their measures have all found that in aggregate those of us who are better able to mask actually experience lower overall well-being than those of us who can’t mask their autistic traits. Obviously individual experience covers the whole spectrum whether you are intellectually disabled or not, but the aggregate results are telling. I appreciate my intelligence. It’s as much a part of who I am as my autistic aspects. Given that I have the unexplained but often observed in autistic people large gap between verbal and spatial intelligence, my autistic brain even shapes the way my intelligence is expressed. But hiding significant parts of myself from everyone around me every minute of every day has been more of a drain and sometimes crushing burden than a benefit, especially since I’ve always longed to be accepted and loved.

Even if I felt safe enough to mask less, the reality is that everyone in my life knows I can mask, that I can fit in to some degree, and that I can look more or less normal. And it’s difficult for anyone to understand why I might not want to do so or how hard it can be. I now know that it’s all mostly effortless for them. Everyone struggles from time to time in certain social situations and they probably believe that’s what it feels like for me. It’s not, of course, but I think you have to be autistic and masking to truly understand how it feels and how difficult it can be.

So what can I do? While I’ve masked pretty much my whole life, I never knew what I was masking before my diagnosis. Notably, I didn’t really understand that the experience of other people was so different from mine. I thought they experienced the world and did things more or less the way I did, but for some reason they could manage it all a lot better than I could. Mostly I thought I was broken and I was trying to hide that truth from everyone. That’s what I was masking. But I had no idea what precisely was broken, so my efforts were at once all-encompassing and scattershot. I expended energy in all sorts of directions and spent every single second trying to keep up with … everything. Combine that with my cPTSD hypervigilance and simply existing each moment required enormous effort.

My ASD diagnosis provided an explanation and a framework. I could learn where my differences really were. I could perceive my efforts through that lens. I could better see the things that were helpful in certain situations and the things that weren’t. While I may not mask any less, I believe I do so more effectively today, in the ways and circumstances where it’s actually needed. I waste less energy randomly flailing.

I’m also working to be a little less demanding on myself. Over time in therapy I recognized the informal accommodations at work I had long negotiated, over which I worried every day, and about which I became highly stressed any time it was suggested they might change. In other words, they were never simply my preferred working conditions. They really were accommodations that had allowed me to be successful in my job. So I formally documented them as accommodations through our HR processes. Nothing changed in my actual working conditions, but it removed one source of worry and stress. It gave me one less thing to constantly manage.

I consciously find ways now to manage sources of sensory overload. For me, much of that is tied to vision with touch next on the list. I bought night driving glasses and they help a lot. And sometimes if the inside lights are bright I’ll keep my sunglasses on, ignoring the voice in my head screaming about it being “weird”. I mostly don’t wear clothing that isn’t comfortable anymore instead of forcing myself to endure it and pretend it doesn’t bother me. I wear my headphones even more openly and constantly now than I used to. It’s a bunch of small things, but in aggregate they help.

I carry a smooth, metal fidget spinner. The sensation of spinning it even in my pocket and letting it hit my fingers is soothing. And the smooth metal also has something like a worry stone feel. I notice more when parts of my body are moving and instead of automatically suppressing it every time, I manage or redirect the movements but still try to express it in some way. I allow myself to enjoy things like spinning or once again letting my body move to music. Agony Autie calls it “stim dancing” and that term really fits for me. It saved my life in the late 80s during a really bad time in my life, and I also seem to have a bit of auditory synesthesia. Especially when surrounded by it, I feel music on my skin and in my muscles. It’s hard to describe. And again, it’s only since my diagnosis that I’ve slowly understood it’s not really the same thing most people mean when they talking about “feeling the music”.

So I’m not working to mask less. I am trying to mask more effectively with less unnecessary drain on my resources. And I’m trying to be kinder to myself in different ways. I can mask and still reduce sensory overload and consciously allow myself to stim in ways that aren’t overtly autistic to those around me. And I can let myself respond without restraint when I’m alone. That’s really more of an aspiration right now than a reality. Controlling my appearance is far too deeply ingrained in my psyche for me to ever simply stop. But I’m trying to relax my guard a little at least.


Diagnosis and Masking – Week 5 of #TakeTheMaskOff

Posted: August 20th, 2018 | Author: | Filed under: Autism | Tags: , | Comments Off on Diagnosis and Masking – Week 5 of #TakeTheMaskOff

What impact has my diagnosis had on my masking? That’s the question posed this week. For some reason my mind wanders to Robert Frost’s poem, The Road Not Taken. Most people know the poem only from inspirational and individualistic quotes about choosing the road others avoid and the difference that can make. That is not, of course, what the poem says at all. I’ll include it at the end for those who might like to read the entire thing. It has a whimsical quality and is full of twists and turns. In the present moment, our traveler is torn between two roads, equally fair, both perhaps worn the same, yet both untraveled that morning. It bounces back and forth down different avenues of observation and speculation in that indecisive moment. There’s a sense that whichever path is chosen there is certain to be at least some regret. The closing, most often quoted lines are not set in the present moment, though. The traveler recognizes that in some distant future they will look back, define the road they chose as the one less traveled, and build a story about how that choice made all the difference in their life.

Our stories are never simply recitations of fact. We are creatures who build narratives. Events in our lives have meaning to us because we imbue them with meaning. We connect them. We are not objective, outside observers. We are participants in the tales we tell. And the ways we choose to tell them shape ourselves and often those around us. The lightness of Frost’s poem carries within it our traveler’s awareness that they are in part a character in the story that will one day be told by a future and perhaps very different version of their own self. We exist in the now. We share a thread of continuity with the versions of ourselves we have been in the past and we trust that thread will be maintained by our future versions. But that future version will not be precisely us, right now in this moment, any more than we are the same as those different versions of ourselves in our past.

Moreover, our memories are not cameras. Even the experience of our senses, the data that informs what we think we know about the world around us, is heavily shaped and interpreted by our brains. The memories themselves collate and capture and often try to make sense of that information. They fill in the missing pieces. They drop things that don’t fit. They revise and reshape. Every single time we access a memory, it is read and written anew, as if it were a new memory. Frost is right. Even though in the present moment we perceive the roads as equal choices with little to distinguish them, in the future we will remember them as markedly different and imbue meaning into the choice we made.

How has my autism spectrum disorder diagnosis impacted my masking?

It has made all the difference. And none.

I can only speak as a late diagnosed autistic person who went from no awareness at all to assessment and diagnosis over a pretty short period of time in what felt like a whirlwind.

That event altered the narrative of my life by giving meaning to things I had felt were scattered and disconnected. It explained things I had never understood and which I had often tried to push to the edge of my consciousness. My diagnosis provided a framework I had lacked my entire life. It changed and is continuing to revise the story of Scott as I put the different pieces in place. It has given me access finally to perceive and hopefully work through things that are not directly related to autism. That may sound strange, but autism describes the way I experience … everything, including trauma. I have an autistic brain. That self-knowledge doesn’t just explain my autistic experience. As I work through my stories in that light, I can finally see and begin to understand all the other things as well.

For we are always creatures who tell stories, of all sorts, but most especially about ourselves. My stories have been shifting and changing. I’m aware of the process and it doesn’t bother me even though I understand it bothers many when it happens to them. I’ve been trying to piece together coherent narratives my entire life. I’ve never found them to be static or, for that matter, complete. And that means I can only write as the person I am now, remembering past events in light of the information I have in this moment, not as the person who actually experienced those events. I see my past masking so much more clearly now than I ever did when I was the person doing it in the moment.

I have little idea, really, who I am and what I want, beyond acceptance and love. I’ve striven for those two things from my earliest memories, with all my will and ability, and I’ve focused my efforts on discerning which things are acceptable to do, acceptable to want, and even acceptable to be. As I told my therapist, there are limits to acceptable deviation from cultural norms in behavior and interaction that most will accept. I’ve worked really, really hard to find a way to stay within those lines, or at least manage perceptions well enough so people mostly believe I do.

My diagnosis has given me the option to turn the accommodations I’ve long informally negotiated at work and over which I’ve incessantly worried into formal accommodations. That removes one source of stress. I’m somewhat more aware of my masking in the moment now and better manage my energy or take actions to reduce some stress. Diagnosis allows me to be more intentional in my efforts instead of flailing at everything.

I would not, however, say that I mask less in any situation or interaction. I think I’m better at some aspects of masking now and worse at others. Some things I’ve done worked better when I wasn’t really aware of them as I was doing them.

My diagnosis altered my whole world and cast all the stories of my life in a new light. That process is ongoing and touches every part of who I am. My diagnosis did not, however, change the world in which I live. It’s no more safe today to stray outside the boundaries of “normal” than it was when I was a child working diligently to fix myself. I do not feel any safer today than I did then.

I’m working on … everything. That’s really all I can say with any certainty.

 

The Road Not Taken

Two roads diverged in a yellow wood,
And sorry I could not travel both
And be one traveler, long I stood
And looked down one as far as I could
To where it bent in the undergrowth;

Then took the other, as just as fair,
And having perhaps the better claim,
Because it was grassy and wanted wear;
Though as for that the passing there
Had worn them really about the same,

And both that morning equally lay
In leaves no step had trodden black.
Oh, I kept the first for another day!
Yet knowing how way leads on to way,
I doubted if I should ever come back.

I shall be telling this with a sigh
Somewhere ages and ages hence:
Two roads diverged in a wood, and I—
I took the one less traveled by,
And that has made all the difference.


Autistic Burnout – Week 4 of #TakeTheMaskOff

Posted: August 13th, 2018 | Author: | Filed under: Autism | Tags: , | 2 Comments »

I don’t have one of my researched, informative posts on this week’s topic. Yes, I’ve read other accounts of autistic burnout. I can’t recall off-hand if I’ve read any formal research or not. I know in a way what I experienced personally, though I struggle to find words that truly capture how it felt. Moreover, it was so pervasive it often lurked at the edges of my awareness. I can also find threads of common experience in the stories of non-autistic people struggling with the ongoing effects of complex trauma, especially from childhood. I don’t think there’s a single explanation or underlying cause for my personal struggles. I believe it was the weight of everything finally becoming more than I could carry.

More people, I think, have heard of autistic meltdowns and shutdowns than autistic burnout. Those are the short term and often visible results of sensory overload and emotional dysregulation. I had both as a child. I mostly learned to control them because I had to do so. I found a way, even though one unintended consequence apparently involved disrupting my interoception much more than I ever understood, at least until it almost killed me last year. After my last major meltdown in adulthood at age 22 landed me in a psych ward over a weekend, controlling them became one of my driving imperatives in life. No, that’s not really accurate. I was driven to control it as a young child. It’s always been an imperative. That was the last time in my life I lost my battle against it. I’ve let the energy out at times, but only in controlled doses in private where nobody could see. And I never, ever let it take control. I’m aware that many, if not most, autistic people cannot manage the overload and dysregulation the way I do. I don’t really recommend my experience, but it has certainly made my life more manageable than it would otherwise be.

Autistic burnout, by contrast, is a long, slow process. For me, especially since I had no idea I was autistic, I had no explanation. Things I had always been able to do became harder over time. It’s not exactly regression, but some loss of skill accompanied it for me. I felt increasingly overwhelmed. I began to struggle to get through most days. I started becoming less capable and less functional. I tried anti-depressants. The one I tried turned the background sense of not wanting to be here or be alive I had managed since I was nine years old into full-blown suicidal ideation. I tried therapy, but it went nowhere. That was always my experience of therapy before I finally figured out I was autistic. I discovered I had sleep apnea and treatment for that gave me a burst of new energy for a couple of years. I discovered I had celiac disease and my body was in bad shape. Treating that improved my energy again for a few more years.

But none of those improvements lasted. I could manage less and less. Every day became harder and harder.

Autistic burnout felt like losing my ability to be a human being, at least in any way that held meaning for me.

I probably reached my lowest point in 2015. I realized how much it was impacting my family and used raw force of will to make myself do better. I’ve begun to realize these past two years just how strong my will can be. I stopped sinking, but couldn’t make much headway until my ASD diagnosis a year later. That finally gave me a framework, explanation, structure, and grounding from which I could work. Things that had never made any sense finally fit. It hasn’t been any sort of magic pill. Progress has been uncertain and slow. But I have finally been able to make progress.

I have some hope again for the first time in a very, very long time.

The ASD diagnosis also gave me the framework and insight to begin to perceive, understand, and work through the impact of toxic stress from my traumatic childhood. I’m barely beginning that work and it’s really hard. I can distinguish the dysregulation of emotional flashbacks from the autistic response I have to overload and that different sort of dysregulation now that I know both exist. They have a different … texture to them. My somatic response, now that I’m learning to pay attention to the signals from my body, is different with each. And only the former comes tinged with dissociation. Complex trauma was certainly a factor in my burnout, but most of it followed the course I’ve seen others describe with autistic burnout, especially the part about slowly losing the ability to do things I had long done.

Life got really, really hard even as the objective demands on me grew less. It made no sense. And that was perhaps the hardest part for me.


Mental Health – Week 3 of #TakeTheMaskOff

Posted: August 6th, 2018 | Author: | Filed under: Autism | Tags: , | Comments Off on Mental Health – Week 3 of #TakeTheMaskOff

I’ll start with a simple statement. I have no idea how masking specifically affects mental health. I’ve never done anything but work to camouflage and hide my differences. I may not have had a name for it, but I always knew I was broken, that I didn’t work the same way everyone else seemed to work. And I knew I had to hide anything others saw as unacceptably different from their view, no matter what. “Quirky” could be okay as long as people found it amusing or endearing. Negative reactions, though, meant I had to find a way to manage whatever had provoked the reaction. My success was always mixed, but that’s how my energy has been focused my whole life.

I can say one thing, though. I don’t believe anyone seeks out assessment and diagnosis because their life is going wonderfully and everything is coming up sunshine and roses. I was struggling two years ago when I sought assessment. I had been struggling for a very long time before then, mostly in silence and shame. I am still struggling today. I have my individual therapist. We’re seeing a couples therapist. I’m now also seeing a therapist, working in coordination with my individual therapist, who specializes in EMDR to try to work through trauma. I’m trying, but none of it is easy.

I camouflage my autism no less today than I ever have. Does that also take a toll on my mental health? I can’t really say. I’ve never lived any other way. It probably doesn’t help.

I can say that I’m so very, very tired.


Stimming – Week 2 of #TakeTheMaskOff

Posted: July 30th, 2018 | Author: | Filed under: Autism | Tags: , , | Comments Off on Stimming – Week 2 of #TakeTheMaskOff

I wrote an early exploration of stimming, Stereotyped and Repetitive?, in my series of 2016 posts stepping through the Autism Spectrum Disorder DSM-5 diagnostic criteria, what they meant, and the ways they applied to my life. Every human being “stims” to some extent, of course. It appears to be something the human brain needs to generate sensory input, express “energy”, and possibly for other reasons as well. Everyone taps their foot, drums their fingers, hums to themselves, chews pen caps, bites their nails, or some other variation at times. However, the extent, frequency, and nature of autistic stims stand out from neurotypical stims. Most of us naturally stim more often, with greater intensity, or in unusual ways.

And yes, even late in adulthood, I can rock, ask my self a question over and over (often some variation of “what did I do?), hit my head against a desk or a wall, and more. But I never do such things where anyone can see. Moreover, in my experience those are not “normal” stims, even for an autistic person. Those are always a sign of distress for me.

However, I suppress and redirect even normal stims. It’s almost automatic when one is noticed by anyone. I interpret the fact that they found it odd as an internal red flag emergency. Whatever my expression and body language might communicate, if someone comments on something my body or voice is doing, I’m immediately on high alert. Yes, camouflaging involves active steps like managing expressions, body language, and prosody. Social rules have to be understood, interpreted correctly, and acceptable responses offered. Those are some of the active aspects of successful camouflaging. But there are also behaviors and actions that have to be suppressed and hidden. And natural stimming behaviors form the biggest category of things that must always be hidden from view.

Some things can be redirected to less visible actions. I do that a lot. I can also hold things together until I’m alone, even if I have to go to the bathroom or for a walk. But there’s a part of my brain that is always monitoring what my body is doing. And the list of things that part suppresses has only ever grown my whole life. It’s a very long list by now.

Rhi captures it perfectly in her Autscriptic, Mild Autism.

But I’m lucky I’m so mild. I’m lucky I affect you so mildly.

That’s the heart and soul of masking, at least for me. I’m desperately trying to avoid impinging on you in ways you will find … distressing. I’m trying to be human, or present in a way you will accept at least as human enough. I do that every waking minute every single day of my life.

Eventually that became overwhelming for me, especially since I had no name for it, no explanation, and no way to direct and focus my energy and resources. I’m still working to claw my way back. But I haven’t really dropped my mask. I don’t see myself doing that. I know to the core of my being that when I fail to affect others “mildly” things never go well for me.

At the 25:00 minute mark in the video below, Monique Botha expresses it poignantly and so very well. “Yeah, sometimes I might look human.” That’s the motivation behind camouflaging. We can only feel human when other people treat us like human beings.


When you work to become the mask – #TakeTheMaskOff Week 1

Posted: July 25th, 2018 | Author: | Filed under: Autism | Tags: , , | Comments Off on When you work to become the mask – #TakeTheMaskOff Week 1

The #TakeTheMaskOff campaign has been designed as a way for autistic people to share our experience of life in a world that often makes little space for us. The stories, blog posts, and videos often expose a shared pain behind the smile on the face you see. Kieran Rose, “Do I look autistic yet?”, Agony Autie, and Neurodivergent Rebel did a livestream discussing the campaign.

I don’t know if someone who is not autistic is truly able to understand what it’s like to constantly monitor your voice, your face, and your body, checking that everything is as it should be while repressing or redirecting your urges to do things you’ve learned other people will see as odd or strange. And while you are doing that, you are constantly trying to match the words people utter to their expressions and body language, attempting to understand what they mean so you can work out the appropriate way to respond. Oh, and when you do, make sure to adjust your expression and maybe your body position to match what you are saying. It’s pervasive and when you developed it the way I did, that continuous cycle permeates your entire being.

The deeper truth is that for most of my life, I had no inkling that I was “masking”. I did not know that most people do not have to consciously do most of the things I do every single moment. Books did not change that perception. After all, they often describe thoughts of trying to interpret others, awareness of miscommunication, and there are non-fiction books discussing communication in depth. As a result, I believed my experience was similar in type to that of everyone around me. I just thought it came easier to them. Somehow they could always do it better. For some reason, I struggled. I was broken.

In a way that’s true, of course. That’s why it was a natural thing for me to believe. In all the years leading up to my diagnosis, though, it never once occurred to me that most of the time most people aren’t consciously thinking about their body language, expressions, and prosody. Most of the time, people aren’t semi-consciously interpreting every social interaction. Most of the time most people aren’t thinking about any of that at all. They are simply experiencing it. They believe it’s natural. I guess in some way it is, for them at least.

But it has never come naturally to me. It’s a skill I developed with a lot of effort and work as a child and one I am constantly trying to refine and improve. It requires effort and energy for me to maintain. Every second. Every minute. Every hour. Every day of my life.

And that means that the term “mask” doesn’t really fit me. A mask is something you can put on and take off. I don’t feel like that’s an option for me anywhere outside the online sphere. But my written words don’t require camouflage. They are more ‘me’, I think, than anything people see and hear in person. But even if it were an option, I have no idea how to remove my ‘mask’. It’s intertwined with my identity. It’s part of who I am. I’m aware of its presence since I have to work to maintain it, but nothing I do is exactly volitional. It’s responsive. I’ve trained myself so thoroughly, I rarely even think before reacting. I don’t ‘choose’ to mask. I’m simply trying to survive and live.

I think of it more in terms of the actions a chameleon takes to camouflage itself within its environment. My camouflage is often faulty and incomplete, but it has worked well enough that I’m still here and doing at least okay by many of the usual measures.

The reality is that I mostly pass as one of you, something that not every autistic person can do. I wrote about that experience in The Price of Passing. I guess I’m lucky? Mostly I put my head down, focus on the current demand or crisis, and try to find a way through it. It’s the way I’ve gotten through 53 years of life. I don’t really know how to do anything else, even when my efforts clearly aren’t working as well as they once did. Or perhaps they never really worked as well as I thought they did? I don’t have any answers. And despite the hashtag, I can’t say I’m taking the mask off. My words just try to expose a little of what lies underneath it.


The Price of Passing

Posted: May 27th, 2018 | Author: | Filed under: Autism, Personal | Comments Off on The Price of Passing

I don’t use the word passing lightly in this post. It’s a word that has surfaced and resurfaced in my consciousness time and again in the past two years since my diagnosis. The concept has a lengthy human history. In oppressive and dangerous contexts, some Jewish people passed as Christian to escape persecution. Women in many cultures have sometimes passed as men to gain the freedoms and privileges associated with that gender.

Passing has an especially painful racial history in the United States. That history reflects the grip white supremacy and brutal racial oppression have held and continue to hold across our country. If you’re unfamiliar with that history, especially if you’re white, you really need to educate yourself. This NPR article, A Chosen Exile, is a good place to start.

Passing also has multiple meanings within the LGBTQIA+ community. That’s not especially surprising in a community formed at least as much from their shared experience of exclusion, marginalization, and oppression for their sexual or gender identity as from inherent, shared commonalities. This article explores passing in that context, but as with racial passing, many other sources are available online.

For autistic people, the definition of passing is, on the surface at least, a straightforward one. It means that non-autistic or allistic people do not perceive you as autistic. Now, that does not then imply they perceive you as normal, typical, or someone around whom they are entirely comfortable. Often that’s not the case as multiple studies are now confirming. I referenced one paper in my post, Fighting First Impressions. Another really good set of studies are discussed in this article exploring where communication breaks down between autistic and allistic people. Those judgments are made so quickly and with such minimal information that even with just a still picture accompanying our written words or a single second of video, we are rated more negatively. Unless you’ve lived a life in which you experienced that reaction every single day, in every context, from just about everyone, you can’t possibly understand what it feels like.

I love Amythest Schaber’s Ask an Autistic video series. Her videos helped me find and connect my lifelong autistic experience with what was to me a foreign and strange language surrounding autism. She has a video discussing autistic passing that creates a good starting point for discussion.

I don’t want to minimize or deny the extent to which things did improve for me after I taught myself to pass reasonably well as allistic. I experienced less violence, less verbal abuse, less ridicule, and was given more opportunity to demonstrate my competence and ability. I correctly understood some of the ways I presented differently from people around me. I worked out an organized way to improve things since my more haphazard efforts were failing miserably. I attacked what I perceived to be my problem with singular focus and tremendous effort. I think I would now label that my autistic will and focus, though I still find it difficult to describe that internal experience in words.

There’s no doubt in my mind that training myself to pass was a survival mechanism and my way of gaining some access to the benefits that flow from our participation in the complex social world in which we all live. I didn’t think it through in those terms as a child, though. I simply understood that I was broken and I had to find some way to fix myself. Moreover, however my rational adult mind might analyze my actions, nothing about that internalized childhood self-perception and the feelings associated with it has really changed.

I pass because it isn’t safe to do anything else. I’m not certain if that’s objectively true or not any longer, but the part of my brain that monitors and enforces my outward behavior is not really rational. That part of my mind doesn’t feel safe. It never feels safe. It has never felt safe. That part of my brain experiences every crack in my allistic mask as something approaching an existential threat.

That’s the first hurdle when people try to tell me I should “just be myself” but it’s certainly not the only one. I began trying to manage the reactions I received from others in haphazard ways from a very young age. Those efforts gradually grew more sophisticated over time. I began working to train myself in earnest and in increasingly planned and organized ways when I was 9 years old. I am now 53 years old. For all practical purposes, I have been working to pass, to make myself something close enough to normal, my entire life. When you have spent your whole life trying desperately to be acceptable to the people around you, in many ways that becomes your identity.

I sometimes have released some of my control and associated stress and tension when I am alone. I have rocked, repeated the same word or phrase over and over, hit my head against a wall or desk, shaken myself, let my mind spiral, and similar behaviors. However, those times don’t reflect some inner real me. They are simply one of the ways I’ve managed the constant stress of passing.

And that stress is real. There are multiple studies and a lot of data about increased autistic mortality, increased risk of suicide, increased substance abuse, and increased risk of other forms of breakdown or illness. The accumulated weight of decades of passing was certainly one factor behind my growing inability to handle life throughout my 40s. It was hardly the only factor. Ongoing stress reactions and disordered adjustments to traumatic experience were certainly also a major problem. But the constant and pervasive stress and effort associated with passing simultaneously drained my resources and amplified my experience, including my reactions to experiences my mind associated with trauma.

No version of some real, natural Scott, free from both trauma and the pressure to respond like those around me, exists. No such person has ever existed. I am always being myself, or at least the version of myself appropriate for a specific context. I’m being myself in the only way I’ve ever been at all. I need to work to process my trauma and heal my stress responses flowing from it when triggered. But that process won’t somehow restore me to some hypothetical self that has never truly existed.

I ran across a reference to that identity problem in a discussion of this talk (the second one) by Lexi Orchard. In that discussion of it here, it’s pointed out how passing is fundamentally a survival skill. Passing reduces painful encounters and grants access to social resources. Those resources range from at least some acceptance by others around you to pretty important things like employment. That description corresponds with my experience. I worked so hard to pass because on some level I felt that I had to learn how to hide my brokenness in order to survive. Toward the end, though, Lexi made a statement that really exposes a major impact of passing.

“If somebody says, ‘What do you want?’, my brain suddenly goes into this passing mode where I attempt to figure out what you want me to want.”

For most of us, this process occurs as we are developing. That means I didn’t develop an identity which I then learned to hide from the world. I developed an identity that revolved around finding ways to be perceived in at least minimally acceptable ways. I accepted I was never going to be fully included. Instead, I worked to avoid outright rejection, assault, and exclusion.

At one juncture, my couples therapist asked after I attempted to articulate my process if I was a “people-pleaser”. And that’s not really an accurate description. Of course, I do want to please my partner. I don’t want to only avoid rejection. I want to be loved. But outside that context, I largely don’t care if others are “pleased” with me or not. I am, however, always driven to ensure my responses and reactions are close enough to “typical” ones that they don’t stand out too much. In a given context, what sorts of things are okay for me to want?

My individual therapist has asked if maybe that’s ultimately the thing that becomes an issue in every friendship I’ve tried to build. At some point, people sense, though perhaps not consciously, that there’s a part of me that’s hidden from them. Those same tools that provide me access to the social world and its benefits become a roadblock to deeper relationships. I’m not sure if that’s really accurate or not, but it’s a pretty compelling working hypothesis.

So I had that in mind when I stumbled across this “belated apology” by a transgender woman the other day. I’ve passed my whole life as allistic and not as a different gender, but there was still a lot in the post that rang true for me. From my perspective, I’ve performed normal. I’ve performed it so well I’ve often mostly convinced myself the performance was reality. I’ve minimized, dismissed, and even put much of the hard work I did to make myself pass out of my mind. I’m the only person who knows my internal experience and the enormous, ongoing effort I’ve poured into performing normal. I’m the only person who sees that child who long ago decided he was broken. I’m the only one who knows the many, many different ways I’ve restrained my behavior, navigated social situations through a complex set of tools, managed sensory input, and mostly avoided uncontrolled meltdowns.

I am still me.

But I’ve never let anyone, even myself, really see that person.

Ultimately, that’s the real price of allistic passing. Your allistic performances become the only version of you that others see and know. It may to some extent be the only version of you that you let yourself see. Nevertheless the autistic you is always there, mostly unseen and unacknowledged inside the masks. And if you ever try to reveal that hidden self, so different in some ways from your performative self, people feel deceived.

But I was never trying to lie to anyone. I was trying to survive in a world that mostly didn’t want me in it.

I’ll conclude by sharing the Ask an Autistic! video on neurodiversity. I would like to live in a world where at least some space was made for people like me. I don’t know how to create such a world, but it seems better than the one we have today.

 


Living With Autism

Posted: January 5th, 2018 | Author: | Filed under: Autism, Personal | 1 Comment »

“What’s it like living with autism?”

It’s a question that’s often posed in publications, interviews, and news shows. On the surface, it looks like a question seeking understanding, but the context often belies that sense.

When I read or hear everything surrounding the question, the focus of the questioner is often on how the autistic person deals with the “burden” of autism or how they “overcome” it.  Sometimes it revolves around how much the autistic person does or doesn’t appear to act or speak like the questioner. The question carries with it an externalization of autism, as though it’s something imposed on top of a person’s experience of the world.

And with all of that comes an almost unconscious sense of condescension from the questioner – how awful it must be that autism keeps you from being like me.

“What’s it like to be so different?”

I perceive and experience the world through an autistic lens. I think and react in ways that are shaped by my autistic brain. It’s the only experience I know and the only one I’ve ever known.

I don’t “live with autism” other than in the sense that I live. I might as well ask you what it’s like living without autism?

It is true that I have experienced some pretty awful things in my life, and some of those I might not have experienced if I hadn’t been autistic. But those experiences were not caused by autism. People rejected and hurt me because I was different. Others saw that I was vulnerable and exploited or abused me.

I didn’t “live with autism” so much as I “lived with or among non-autistic people.” And collectively, human beings can be pretty horrible to people who are different or vulnerable.

My monsters were never imaginary. They were all too real.

However much I tried to meet the demands placed on me from living among people unlike me and however close I came to emulating their behavior, it was never enough.

The way I think, experience the world, and perceive reality is not something I “live with”. It’s who I am. I have spent my life “living with” an often hostile and frequently dangerous world of people who have more often rejected my place among them than accepted me.

And perhaps that would have been easier to handle if I didn’t care so much and so deeply. I’m vulnerable, at least in part, because I care.

There is one thing I wish non-autistic people could hear clearly and loudly.

I don’t live with autism.

I live with you.