Who Am I?

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 now 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. Anyone unfamiliar with that history, especially those of us who are white, should educate ourselves. 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. Their videos helped me find and connect my lifelong autistic experience with what was to me a foreign and strange language surrounding autism. They have 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. It’s all there every minute of every day.

I pass because it isn’t safe to do anything else. I’m not certain if that’s objectively true 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 ‘normal’ 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 of their talk, 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.


Childhood – Just Get Over It?

Posted: May 21st, 2018 | Author: | Filed under: Personal | Comments Off on Childhood – Just Get Over It?

The things that happened in childhood are all in the past, for some of us the ancient past, right? We just need to put it behind us, focus on the present and future. We can’t change the past. We need to direct our mind toward the things we can do now. On some level, the underlying, relentless mantra is a simple one: Just get over it.

Don’t be a victim. Don’t let it control you. Don’t let it define you.

Don’t be weak.

I know those messages well. They are the air we all breathe every day. I absorbed them. They became my mantra. And they fit in a way. From my earliest life, I always picked myself up, worked to figure out what when wrong, and tried again. That make it sounds more organized and rational than I’ve ever been. Nevertheless, I’ve always had a relentless will. Somehow, even during my worst experiences, I found a way through. I found a way to get back up. I wouldn’t say I found some mythical best way. But I got through it and began moving forward again. Often it involved simply taking the next step. And then the one after it. And then another until I could take that next step without intense focus and effort.

There’s an exercise I hear people doing all the time in many settings and contexts. An adult reflects on the wisdom or encouragement they would share with some version of their child self. I’m not sure what they gain from that exercise, but the fact that so many do it means it has some widely shared value to people.

Whatever it does for most people, I don’t share their experience. When I gather my scattered childhood memories and reflect on what that child version of Scott was experiencing and how he was responding to it, I have no advice or encouragement I would share. I feel and see how determined, resourceful, and strong he was. And I feel how alone he felt, but kept trying again and again and again to find and connect with others.

In the face of young Scott’s effort and will, if anything I feel weak. I tried to keep putting the past, my reactions, my failures, and the things I experienced behind me. I’ve focused on the now. I’ve gotten through each day. And I’ve accomplished a great deal by most measures. But as I moved into my 40s, I began to be increasingly overwhelmed by life every single day. Undiagnosed sleep apnea and celiac disease made things worse, but addressing those gave me no more than a short term bump in resources and energy.

I’m good to have around in a crisis. People have even told me as much. I don’t get thrown into emotional and mental disarray. I begin focusing on the things that need to be done. I constantly assess the situation and change tracks when needed. But I maintain my equilibrium in no small part because I live every moment of my life physically and mentally prepared for the next crisis, whatever it might be. I live each and every moment of my life in a form of crisis mode. Over the course of decades, it seems that such constant vigilance exacts a price.

The Centers for Disease Control and Prevention (CDC) have been studying and treating adverse childhood experiences as a national health problem since the 1990s. I stumbled across that work through an NPR story, Take The ACE Quiz — And Learn What It Does And Doesn’t Mean. I took the quiz on impulse before reading the article and it ended with a screen displaying the number ‘9’ without context or explanation. I then went back and read the article and found the CDC page on Adverse Childhood Experiences (ACE).

The study focuses on 10 comparatively common adverse childhood experiences and their impact on the health and well-being of people throughout their lives. My score of 9 means I experienced 9 out of the 10 they include at some point in my childhood. The list captures some of the more common shared experiences, not all the adverse experiences a child might have. I can easily expand that list with other childhood experiences from my personal life that were also very challenging.

The CDC studies ACEs and how to improve outcomes because as the list of ACEs a child endures grows, so does the list of negative health and well-being outcomes throughout their life. There’s a strong correlation between the two. In many ways, it’s a national health crisis in the United States, and one that’s almost invisible to most people.

That makes sense. We are beginning to understand how our environment creates epigenetic changes that alter the ways genes are expressed. One effect of severe or chronic childhood stress is that the gene for the glucocorticoid receptor becomes inactive, disrupting feedback inhibition. Stress hormones continually flood the system. That matches my lived experience; I’m hypervigilant and always living in a type of crisis mode. It’s means I’m useful when an actual crisis does occur. But it also means I experience normal disruptions that aren’t objectively all that major as if they were an existential crisis.

Moreover, those experiences seem to be somehow stored in my body. It’s a struggle to let myself feel much at all without being overwhelmed by tidal waves of emotions unrelated to my present condition or stronger than current events explain. My muscles are always tight, protective, and ready to respond. Based on my stiffness and soreness when I wake up and get out of bed, they don’t seem to relax much even when I sleep. My interoception, the awareness of my body, its state, and how it feels, is extremely poor.

It would be nice if I could somehow ‘just get over’ my childhood experiences. I’ve certainly tried to put it all behind me my entire life. Unfortunately, that’s easier said than done. I’m trying to recognize and believe that I’m not weak, that I’m really very strong. I’m trying to believe I can be loved, that I don’t deserve to be rejected. But again, that’s easier said than done. I’m trying to tell myself I’m safe, but I never feel safe.

I would love to ‘get over’ the past. But that’s hard when the past has written itself in my body. Mind over matter creates a false dichotomy. After all, my mind is itself formed of matter. My brain is part of my whole body and all its component parts interact and shape each other every single moment of my life. I am my body. That has always been true and will always be true.

Just get over it‘ is a condemnation and judgment lodged against every human being who might deeply desire to do precisely that, but fails again and again.

Trauma – What’s in a Word?

Posted: May 20th, 2018 | Author: | Filed under: Personal | Comments Off on Trauma – What’s in a Word?

I know I’ve only been posting intermittently since 2012. There’s been a slight uptick in the frequency of my posts since I was diagnosed with autism spectrum disorder in 2016, but I still haven’t published thoughts as frequently as I did for some years. I’ve also been commenting less on other blogs during that same time period. The reasons are both complicated and ones I can’t really claim to fully understand myself.

I’ve always been more bemused than anything else that some people seem drawn to my words. I’ve been equally bemused by the number of different people over the years, most recently including my therapist, who have told me in all seriousness that I should write a book. Every person has envisioned a different book I should write, which makes it even stranger to me. I can’t even explain why I’ve never felt a desire to seek any form of publication. It’s not like the process of being a writer is somehow foreign to me. Both my parents as well as other family members and family friends have been published in a variety of contexts. One of my good childhood memories is attending a massive American Booksellers Association convention in Atlanta in the 1970s at which my parents had a booth.

Maybe that’s part of the problem. One of my mother’s books began as her first Master’s thesis. She didn’t finish that degree, but self-published the thesis as a book later. (My parents had their own small press publishing company and book store for a few years when I was a child.) Later, she updated and expanded the book and the revised version was published by a university press. I don’t recall the details of its republication, but I believe it may have been after she had completed her Master’s in Art Therapy. I know the book was used in some classes around the country. It’s an insightful book in many ways.

The title of my mother’s book is Just This Side of Madness: Creativity and the Drive to Create. I think of the different writers and other creative people, familial and otherwise, that inhabit my childhood memories and I find little reason to dispute the thesis developed in the book, though it’s been many years now since I last read it. Those truths shaped one of many ways my childhood was … challenging.

I do not deny my own creative drive. It’s present and strong. And that creative energy and will form part of the reason I’ve been so successful in my career. Whether it’s writing an end-user application or the sort of deeper, less visible IT design work I do these days, on a very basic level I have to envision something which does not currently exist and work out the means to bring it into reality. That’s the part of my work I enjoy; the rest is often drudgery.

I mostly think in words. I don’t remember a time when I could not read. I can’t really even remember a time I didn’t read on an adult level, which is odd in a way I’ve never been able to describe. I read and could comprehend the denotations of the words, but I lacked the experience and more developed, nuanced understanding of an adult. In many ways, my writing is a window into my mind. It reveals my thoughts at a particular time in a particular context.

When I began to  be so overwhelmed that it robbed me to some extent of my words, that was at once an expression of my inner turmoil and an agent of that same turmoil. It’s not only my public writing that slowed. Outside the context of work, I began struggling to write at all. My thoughts were chaotic which meant my words, which have flowed my entire life, were increasingly difficult to hold.

My thoughts are my words and my words are my thoughts. As I struggle to write, so I struggle to think clearly.

Some words are harder and more slippery than others. Trauma seems to be such a word.

My childhood and early adult life were challenging. On a cognitive level, that truth has always been undeniable. However much I may have minimized or dismissed my experience, the reactions of other people when I revealed even small snippets have always shredded those attempts on my part. One problem, though, is the cognitive part of my brain is not where the effects of those experiences are mostly stored. In fact, they are hardly there at all. I’ve always struggled to think of them in any vaguely coherent way.

A family member recently described their experience of recently discovering gaps and holes in their memories. They found it distressing on something of an existential level and asked questions I found intriguing, “If I’m not the sum of my memories then what am I? And if I am that sum, but parts of me can vanish, what then?”

It’s not so much that I sought answers to those questions, it’s the premise and experience of life that allowed them to be asked which caught my attention. There’s no point in my life when it would have even occurred to me to ask them. My memories and associated experiences, especially throughout childhood, are defined more by their isolation from each other than by any sense of connection. The gaps and holes in my memory combined with the jumbled nature of so many of the ones I do have together feel more like the shards of a shattered mirror in the fragments of which I can see pieces of my reflection.

The gaps and holes even have different textures to me. In some memories I’m aware that there are people and things present somewhere that are absent from the memory. Other memories are fuzzy and almost staticky with elements fading in and out. Others are jumbled and chaotic. They are hard to piece together and decipher. There are some where I have tiny pieces and I even know they created internalized negative reactions that sometimes went on for years, but I can’t quite put things together. It’s like it’s a flicker at the edge of my vision. And then there are places that are just … gone, even the shards are missing from my pile of fragments.

Mostly I’m the ‘me’ experiencing this moment. I have some sense of continuity, of a shared life, with past versions of ‘me’, though the farther back in the past I go, the more distant and different that ‘me’ becomes from my current experience. My past created the circumstances in which I currently exist, so in many ways it shapes and forms me, but the sum of my memories? No, that requires a more linear and ordered collection of memories than I’ve ever had available.

My diagnosis was the key that is gradually unlocking my experience. Autism explained so much about my life that had never made sense before, whichever way I had viewed it or tried to fit things together. But as I peel back those layers, they’ve been exposing the things that get left behind, that aren’t explained, at least not in whole, by autism. And I have a lot of those.

Many of those things, it seems, are better explained by my experience and reaction to complex trauma, as colored and shaped through the lens of my autistic experience. That recognition has been a long, slow process. I can’t explain why, but in many ways it’s been much more of a struggle than internalizing and processing my autistic experience.

My therapist has other people she wants me see and things she wants me to try. I’ll tackle them and do my best. The people I love need me to be a healthier, better person. Everyone keeps telling me I should do things for myself because those things help me, and I guess I understand their point. But my own needs, whatever they may be, do not give me the drive, focus, and motivation I require right now. The needs of those who depend on me do.

Trauma is a hard word. It doesn’t let you hide.

But it’s harder for me to hide these days anyway. I’m pretty certain I still feel a lot less (or at least identify fewer feelings, which is similar) than most people. But by my standards, my feelings are nearer the surface, more accessible, and more raw than they’ve been most of my life. And it’s not the things I feel in the moment that are often overwhelming. Time and again, feelings that are unrelated or out of proportion to anything in the present moment well up and threaten to overwhelm me. My memories of the things that happen when that’s the case are, at best, jumbled and chaotic. They are similar in texture and feeling to so many of my childhood memories.

I believe that’s similar in some ways to the experience sometimes described as being ‘triggered’. In my case, no visual experiences accompany the experience as you often find described with PTSD and as I’ve witnessed personally with different family members over the course of my life. But I feel as I did in those past situations, without actually remembering any situation, and it effects me in every way as though my emotions and body were experiencing it again.

In many ways, my body has never left its past experience behind. I find my muscles are often tense and prepared, so much so that things will sometimes hurt with no explanation. At the same time, my interoception is so poor, I nearly died last year. And while I thought of myself as “calm and relaxed” my whole life and had taught myself a presentation that created something of that impression, I’ve gradually become aware that my default state is not just ‘anxiety’ but outright fear. My body lives in a state expecting the worst at any moment. If my interoception were better, I’m beginning to wonder how often I would be paralyzed by a form of panic attack.

I’m surprised each day by how hard the present situation in my country is for me to bear. It hasn’t gotten significantly better since the election. And I did not expect that to happen nor does it make any rational sense at all. I wasn’t surprised by the election results as so many others were. I have relatively few delusions about our country and the campaign process had long stripped any I might have retained. I’m also an older white male. I’m in just about as ‘safe’ a demographic as one can be in our country today, though being autistic makes me less safe if things do get as bad as they could. Still, I’m not really visibly autistic, so even the worst case risk is not that great. I expected my role would be to speak, vote, donate, and support those at greater risk than me.

Instead, the callous disregard for the humanity of others, the mocking of disabled people, the sexual assault even of children, and the recognition that so many people were at least okay with all that and more … created a reaction I can’t really describe. I was already struggling with my thoughts and that became more challenging. Emotions well up from nowhere, even in completely neutral and relatively emotion free contexts. And my ability to both write and read for pleasure withered further than they ever have in my life. I have no explanation for my reaction. It makes no sense and I’m aware it makes no sense. Nevertheless, I live with the experience of it every day and I have no true idea why.

Trauma is a painful word. It hurts to live and breathe at times.

Many of the things I read about trauma describe restoring a person to the healthier version of themselves they were before. It’s about integrating the experiences into the narrative of their lives. But what if there’s no ‘before’? I’m probably the closest I’ve been to ‘healthy and integrated’ in my whole life today. I was handed the tiles of a shattered mosaic from the outset with no idea what the picture should even look like.

I’m writing less because words are a struggle right now. They often have been when I speak, but rarely when I write.

I need to find my words. It seems increasingly likely that trauma is the word within which they are hidden.