Who Am I?

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.

 


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.


I Can Only Imagine

Posted: March 17th, 2018 | Author: | Filed under: Personal | Comments Off on I Can Only Imagine

Content warning: Discussion of abuse

I was spending time in a bookstore recently. Bookstores and libraries have been my personal havens my entire life. I wander through sections and stop to read parts of books. I loved it when many started serving coffee as well. I saw a display of different books of poetry and one with a jellyfish on the cover caught my eye. I picked it up and looked through it randomly. The page on when I stopped had the following.

Let’s be frank — there are times it feels the whole world is falling apart. You cannot compare your pain to others’ so why respond with “Someone else has it worse?”

Pain is immeasurable when it’s felt because in that moment it feels like the worst pain on earth.

The book of poetry and prose is Pillow Thoughts by Courtney Peppernell. The back of it says, “Make a cup of tea and let yourself feel.”

My whole life, I’ve found my words in books. It doesn’t surprise me when I do; it’s what I expect. I took the book, got a cup of coffee, shared my initial deep reaction online, and read a bit more. I had decided I was buying the book as soon as I saw that page, but I sat and read and let myself feel, something I rarely do.

That pillow thought captures the soul of an idea I’ve tried to express myself.

The worst abuse you have experienced is precisely that — the worst.

I keep repeating that for two reasons. I know when people hear some of the details of my life, there are those who use it to minimize their own experience because “theirs wasn’t that bad.” I’ve heard some people in my personal life say it out loud, but I’m deeply familiar with the tendency because I do it myself. I point to the stories that are different from mine in some way and I label those “worse” to minimize and dismiss my own experience. Even though many of us seem to do it, that narrative is a false one. Trauma is trauma. There is no scale on which it can be weighed or measured. And abused children, in particular, have lived lives shaped in no small part by trauma.

I want to keep that idea clearly in mind as I discuss some aspects of my reaction to the biographical film, I Can Only Imagine, about the early life of Bart Millard, the lead singer of MercyMe. MercyMe is one of my wife’s favorite bands and we learned about the movie at a recent sold-out concert for which I found tickets. I watched for and bought tickets to an early release of the movie. Personally, I remember the deep chord their first hit song, toward which the movie of the same title builds, struck with me. The movie reveals some of the emotions behind the song that likely made it resonate with me. Obviously many other people had a similar reaction to it at the time. I enjoy their music, but I enjoy all sorts of music if done well. I wouldn’t call them a favorite of mine, but I had fun at the concert despite the crowds and bright lights in my face at various points. I draw a great deal of joy in life by facilitating and participating in things that bring happiness to the people I love.

A book I’m working through in therapy, The Body Keeps the Score by Bessel van der Kolk, M.D., describes the particular challenge trauma victims experience creating a narrative that places their trauma in some sort of context and, most importantly, in the past. Trauma victims in general, and abused children in particular, tend to be overtaken by memories, by experiences, by reactions, and even when the memories are distanced or repressed, their brains and bodies retain them. The experience of trauma is always present. In a sense, it’s a part of the air we live and breathe. It forms and shapes the world in which we move.

This movie shows us the narrative Bart has built for his trauma. As such it is deeply personal and very brave. I want to honor that truth. I don’t know that I have a good narrative myself, though I’m working on it. I can see how I’ve worked on different ones my whole life, but most have melted over time in the forge of my experience. I keep trying to build new ones and I have maintained enough of a narrative that I’ve been able to function and live. But it’s been a struggle my whole life and is no less a struggle today. I am genuinely happy for every abused child who has found a path through that darkness. I say that without caveat or reservation.

I also could not do what Bart’s done and share that narrative with the world. People may believe that I’m open online, in groups, or one on one, but I’m not really. Everything I share is heavily edited, shaped, and carefully managed. I just happen to have had the sort of life from which I can tell small, edited pieces and it sounds worse or more dramatic than most people expect. And so the things I say are often heard as the raw, unvarnished truth, even though that’s not the case. And it’s not only that I don’t share everything with others, even the people closest to me. I keep a lot of it from myself as well, tucked carefully away, and only experience it when life forces me into a place that impinges on it and brings it back. I can share specific things at certain times and in particular contexts, but even the thought of trying to place my story on a screen or in a book for everyone or even any one person to see terrifies me.

If you were an abused child, this movie will almost certainly be hard to watch. It includes many scenes of physical and emotional abuse. The movie also shows how those experiences constantly replay in Bart’s head as a teen and young adult and how events cause those memories to overtake and overwhelm him at times. It shows at least a few of the ways his experiences played out in self-destructive behavior and actions that hurt people who loved him and whom he loved. I watched the movie within a sense of unreality or hyper-reality. I don’t really have words to describe the experience, but it’s the same mental and physical sensation I experience in times of crisis or when something pushes me toward those places I normally keep hidden and put away. I started shoving my emotions away and severing my always unreliable connections to them. I suppose the technical term is dissociation. I found myself wiping away tears with no idea what was causing them at seemingly random points in the movie.

I cannot comment on the technical merits of the film. As an actor and writer (though neither professionally), I usually have thoughts and reactions on both with any performance. I can’t do that with this movie. Even though none of the details of Bart’s story were at all similar to my life, the visceral experience thrust me into my own world of pain. I can’t comment on whether or not it was a good film. I can’t critique the individual performances. I don’t know how strong the writing was. I can only say that from my reaction, I believe the movie did a pretty credible job portraying the experience and effect of childhood abuse and abandonment. It took me a few moments to reach a point where I could speak after it ended. Fortunately, we saw a couple we knew as we were leaving the theater and my wife chatted a lot with them while I smiled and nodded most of the way back to the car. By then, I had begun to gather myself and could use my words again, at least a little.

The basic narrative of the film is a straightforward one. The actor portraying Bart even verbalizes it near the end. Bart’s father was a monster who came to know Jesus late in life and was transformed into the Dad for whom the child had always longed.

That narrative itself is reductionist, but it tends to be the only sort of narrative white evangelical Christianity allows. And that truth lies at the heart of my personal reaction to the movie. The only reason Bart’s story can be told in an evangelical film and embraced by an evangelical audience is that it happens to fall within the bounds that evangelical Christianity attempts to place on human experience. I don’t dispute the truth of Bart’s experience. I applaud his bravery and honesty. And I am genuinely happy that he found a narrative, that he has healed and is healing, and that his father finally found some measure of peace before the end of his story.

But much, and I would even venture to say most human experience, especially for those of us who have lived lives shaped by trauma and abuse, falls outside the narrow confines of the evangelical narrative. I want to emphasize that those stories do not fall outside the boundaries of the larger Christian narrative. Anyone who has explored my blog might understand some of the reasons I continue to call myself a Christian. I draw incredible hope, in particular, from the Incarnation, from a God of love, which can only be expressed in united community, joining their nature with ours. Evangelicalism is, in that broader context, a truncated and stunted expression of Christianity.

It’s not always, or even usually, those “non-Christians” who do monstrous things and shape themselves into monsters. The monsters, especially in our culture, are often Christian. And no, they aren’t “fake” Christians. They aren’t only publicly recognized. They are often privately zealous and many truly help some people tremendously even as they destroy others. Human beings are complicated in that way. The dividing line between monster and saint runs through every single heart every single day of our lives. I’m glad that at the end of his life, facing terminal cancer, Bart’s father was able to finally become the man and the father he had likely always longed to be. Most people never change that dramatically or can’t sustain the change. We should treasure the stories of those who do. But we value those stories precisely because they are the exception and not the rule.

I’m glad Bart found his narrative, experienced redemption with his father, and was able to share his story with us. I’m frustrated that his story is the only sort of story evangelical Christianity allows.


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.


Autism and Disability

Posted: September 17th, 2017 | Author: | Filed under: Autism | 4 Comments »

I’m going to delve into the topic of disability and autism. One thing I’ve noticed in the year since my diagnosis is that the association itself is controversial for many people. And that strikes me as odd. I’m not going to reference any particular individual or post, but rather ideas and assertions I have seen in various places by all sorts of people. Even a quick google search on autism and disability will reveal all sorts of articles and posts asserting that autism is not a disability on one hand countered by others describing the ways it can be disabling. My youngest daughter and I have a standard phrase we picked up somewhere, though I don’t recall where, which we often use to express our shared frustration.

Words mean things! Really.

Now that’s not to say that words can’t have multiple, complex, or nuanced meanings. And the shared meaning we ascribe to words can certainly change over time and in different contexts. Nevertheless, the power of language lies in its ability to communicate and create shared understanding. Speech (written or verbal) is a form of action. It can inflict pain. It can build bridges. It can create new understandings. It can form empathy. It can be used to abuse and torment and it can be used to heal. Words are powerful things. Words are real, with their own texture and substance. So it’s not just a matter of a personal choice of words. There are reasons people are choosing and rejecting particular words in this discussion. They are forming or trying to form a particular reality through their words. Many of the reactions are visceral. I’m not sure my thoughts will add value to the discussion, but if nothing else it will help me to write them.

I also live and have always lived in the United States, so in this area my focus and context will be the particular one here. Some of what I write may have universal application. Some of it may be highly contextual. I’ll reference the EEOC heavily since that’s the most relevant organization when discussing the formal definition and legal context of disability in the US. And if words have any meaning, we have to begin by establishing a common definition. The definition in the Americans with Disabilities Act (ADA) is a good starting point.

(2) DISABILITY- The term `disability’ means, with respect to an individual–

(A) a physical or mental impairment that substantially limits one or more of the major life activities of such individual;

(B) a record of such an impairment; or

(C) being regarded as having such an impairment.

The Supreme Court had issued rulings that restricted that definition in ways that ran directly counter to the way Congress meant them, so they passed the ADA Amendments Act (ADAA) to ensure the definition was interpreted as they intended. In the US, it’s that law which requires employers to provide reasonable accommodations and prevents discrimination. That’s not to say that it works well all or even most of the time. But to the extent legal protections exist here, they are rooted in the ADA. The EEOC has issued a rule for Federal agencies, which are intended to be “model employers” and are collectively the largest single employer in the United States, that specifies how they will implement affirmative action as required by section 501 of the Rehabilitation Act. The first “targeted disability” in the form OPM has published for employees to voluntarily provide disability status uses autism spectrum disorder as its example.

So clearly in a legal context in the United States, Autism Spectrum Disorder is a disability. I don’t believe that’s a matter of dispute. But I sense that some people are trying to say that it shouldn’t be considered a disability. And the question then becomes why? There doesn’t appear to be any argument on a factual basis. After all, a person can’t be properly diagnosed as autistic unless it causes “clinically significant impairment in social, occupational, or other important areas of current functioning.” And almost any article, post, or online discussion I’ve found by autistic people discusses the issues they encounter and the different ways they’ve found to mitigate their impact. I empathize with all of it. But those very discussions illustrate the many different ways autism limits major life activities for all of us. We work to mitigate those limitations, but nobody can reasonably argue their basic existence.

So legally and factually, autism is a disability, yet some autistic people react strongly against that label. Why? I can only think of one situation where people usually reject an otherwise accurate description or label, when that label is experienced viscerally as demeaning or pejorative or threatening. When I taste the different words some autistic people use to express their rejection of the disabled identity label I often feel that visceral texture in the substance and shape of their words. And I understand some of it. Disabled people are often treated as less than human. They are subject to jokes, scorn, and poor treatment across societies. We have laws like the ADA because discrimination inarguably exists. Moreover, autism is pervasive and developmental which means that many of us have been targets of abuse and scorn, diagnosed or not, from our youngest years. We’ve heard the slurs and insults, even when they weren’t directed at us.

We’ve probably absorbed other ideas along the way. For some of us, accommodations and supports are signs of weakness. We need to be strong and push through. I’ve driven myself relentlessly for decades to find ways through every challenge. Ironically, despite my constant internal mantra that I needed to “be strong” I never actually felt strong. I felt weak. I saw everyone act like the things which were so hard for me were easy and I hid my struggles. I felt deficient and broken. It’s only been since I’ve been diagnosed, since I’ve realized that most people do not share my experience of the world, that I been able to begin to see that I’m not weak. In truth, I’m stronger than I ever believed I was. I’ve not really internalized that truth yet, but for the first time in my life I can see it. With time, I may even start to believe it.

“Disabled” is not, or at least should not be, a pejorative. The word is used to encompass all who face substantial limits to one or more major life activities. Those limits exist, in no small part, because the social systems and structures that work to one extent or another for most people, don’t work as well or at all for people unable to access them without accommodation unless, of course, such accommodations are provided. I can’t really say that’s the only source of those limits, though, even when it comes to autism. My heightened response, perhaps related to the amygdala or perhaps something else, is independently challenging to manage. My sensitivity to certain stimuli and insensitivity to others exist independently. And social is intertwined with everything it means to be human. It’s not just how people react to me; it’s also my struggle to effectively connect with them. Even when people say they just need “acceptance” they are naming and asking for a social accommodation. I would say it’s by definition “reasonable”; all human beings should be accepted. But reality often falls short of that aphorism.

Fundamentally, the fight against being labeled “disabled” seems to be a fight against being grouped with disabled people and treated and perceived the way disabled people are often treated. It may also be that people don’t even want to perceive themselves as “disabled” because they unquestioningly believe that would be bad. I can understand the power of that motivating force, but it’s not a noble one. I believe the technically accurate label for that state is internalized ableism.

I’ve seen that same dynamic in play within the autistic community. When I was first investigating autism and considering diagnostic testing, I was confused by some of the things I read and reactions I saw regarding the changes in the definition and criteria for autism in DSM-5. Specifically, most of the strong, negative reactions I saw were about the “elimination” of Asperger’s Syndrome. I studied the background to try to understand it, but much of it made little sense. Some people acted like ICD-10 was a completely different diagnostic tool. It’s not, really. The US uses the ICD for medical billing and specific diagnosis just like the rest of the world. And the rest of the world does “use” the DSM as a diagnostic tool. The DSM is not used exclusively in the rest of the world, but it’s not used exclusively in the US either, though it is perhaps used more broadly.

When I actually read the DSM-IV criteria, the only substantive differences I could see between Asperger’s Syndrome and Autism were that Asperger’s specifically excluded people with clinically significant delays in language or cognitive development. That’s the only real difference, which points to one reason for the visceral reaction by some people. They didn’t want to be grouped with those people, the ones often labeled with the ‘r’ slur. I read plenty of people who were highly offended by the idea that they had “autism”. And there was fear, primarily among parents of autistic children, that including those people who didn’t have “real” autism would take something away from them. The anger and the fear were all rooted in diagnostic criteria with little objective clinical difference. There was a lot of subjective perceived difference layered on top of the actual criteria.

Recently, I “tested” my therapist by participating in half a session with all my normal social mitigation behaviors consciously active and kept her talking in a highly “engaged” conversation that ranged only onto topics that would not require me to take too much attention away from my social management skills. I needed to understand how good they really were. I then debriefed and walked through what I had been doing. She had noticed a subtle shift, but people change all the time for all sorts of reasons. Unless it’s a major or dramatic change, there was no reason for her to make particular note of it. She told me that even in my most vulnerable and open moments I rarely present in an obviously “autistic” manner. Atypical? Sure. But I’ve so thoroughly internalized and habituated my skills that they never completely stop working as long as I don’t fully lose control in an actual meltdown or shutdown. And I’ve not had a full meltdown since I was hospitalized thirty years ago. I also manage to withdraw enough to keep full shutdowns from occurring where people can see them. Partial meltdowns or shutdowns? Sure. But I manage that aspect as actively and habitually as I manage social presentation. So when I described myself as one of the “optimal outcome” group in my earlier post, I was not stretching the truth. My therapist said it’s clear that I fit the criteria, but that would be difficult to tell from observation and tests alone. It only becomes obvious from the details of my childhood history and the things I share about my own experience. The tests catch pointers, clues, and indications, but are not independently sufficient for me. Actually, they probably aren’t enough to diagnose anyone. But they give more clues and indications for many people.

My therapist then joked that I had never set off her “Aspie radar” which is usually pretty good. She then paused, and told me that of course I couldn’t have been diagnosed with Asperger’s under DSM-IV. My clinically significant delays in general language would have excluded me from that diagnosis. I also had some other features from the section left out of Asperger’s, so Autism would have been the more appropriate diagnosis anyway. And that, of course, is one of the reasons they were merged into a single diagnosis. Studies showed that language delay was not particularly distinctive in autism and had no predictive value. It was as common for autistic children to develop normal or superior language after an early delay as it was for non-autistic children. And autistic children with no general early delay could later experience regression in language. Language delay is no longer a diagnostic criteria at all for that reason.

And when I considered that information, I was completely comfortable being excluded from the “Asperger’s” group. I understand that with the background of “Kanner’s Syndrome”, the creation of a different diagnosis was the only avenue available at the time to expand the scope of autism and include many people who had been excluded before. But that distinction led to what I perceive as an unhealthy division within the autistic community itself. And much of that seems to flow from a perceived stratification. There’s a hierarchy of sorts in play that acts to privilege the “gifted” Asperger’s group. I don’t believe the value of people lies in their utility. In a hierarchy of that nature, I would rather be included with the group on the lower rung.

And it’s in that same vein that I don’t wish to separate myself from other disabled people. I may not experience their challenges or fully empathize with the exclusion, isolation, and despite they face, but I can relate. And I will choose to stand with them. My mind also relentlessly checks to see if I’m distorting or ignoring reality. It won’t let me pretend that I don’t require accommodation and have always needed accommodations. The fact that I’ve often been able to negotiate enough accommodation to survive and even excel in some settings doesn’t change the fact that I actually needed them. And I needed them because I do and have always faced substantial limitations in major life activities. The difference is that I now know why I needed them and it wasn’t because I was weak or broken.

This post represents some of the dynamics I’ve observed and felt. It’s not meant to be comprehensive, but I’m curious if anyone sees a major aspect or factor that I’ve missed. I know very little about the social sciences in the area of disability; I’ve mostly been learning specifically about autism and that’s likely to continue, but I’m sure my scope of exploration will expand over time. If anyone has anything to add or recommend in that area, I would be very interested.

I’m autistic and disabled.

And I have no problem claiming either label.


What? Me Anxious!?!

Posted: August 26th, 2017 | Author: | Filed under: Autism, Personal | 3 Comments »

My wife has commented that I never spoke about anxiety or being anxious before I was diagnosed. And she’s right, but it’s been an ongoing challenge to untangle and understand the reasons why that’s true. In part, the self-conception I’ve developed over the years and which I work hard to portray reflects more the goal of my performance than my reality. I’ve worked hard to appear flexible and easy-going, but that requires that I constantly manage the tension I feel when things do change or the unexpected happens. So I’ve developed an outwardly calm demeanor that more or less works. Family members, in particular, often see through it, but it generally seems more effective than not.

As I continue to discover what alexithymia is and how it operates for me within my personal experience, I also see that I can sometimes simply pick an emotional label for a given physical state whether or not it’s the correct label. Many years ago, I think I subconsciously decided the way my body and mind feel most of the time when nothing significant is occurring should be labeled ‘calm and relaxed‘. When I’m in that state, I’m ‘fine‘ by my standards. The key thought is ‘by my standards‘ since that’s the only perspective I truly knew. The discovery that my norms are often very different from the things most people consider typical has been an ongoing part of my process of learning what it really means for me to be autistic.

I have a number of family members who do struggle with anxiety. And it can spike and interfere with their functioning. They sometimes need medication or space to breathe to prevent it from overwhelming them. I thought I understood what they were experiencing, but I now see I was interpreting it through the lens of my own experience and not theirs. The wave of physical and mental internal experience I believed they were battling I equated to things I experienced which I now understand are better labeled ‘meltdown’, ‘sensory overwhelm’, or ‘shutdown’. A few times in my life, I’ve been so overwhelmed by the mental and physical barrage the result was much more severe than a meltdown, but did not result in a shutdown. From later descriptions I was given they resembled some sort of dissociative state. My body did not protectively cease active functioning as it more or less does in a true shutdown, but my mind was no longer truly processing anything coherently. Those were meltdowns on steroids that should have been full shutdowns, but for some reason weren’t.

The last such instance, when I was 22 years old, caused my neighbors at the time to call 911 out of concern and led to an involuntary admission to a psychiatric hospital. When I recovered, I went with the simplest solution they proposed (a suicide attempt) and followed all their protocols to quickly get released and off their radar again. I’m not unintelligent and I can be somewhat good at working systems when I am forced to do so. I’ve worked to never reach that point again and to date I’ve been successful.

It’s only when I was diagnosed and was able to relate my personal experiences to the more appropriate autistic terms that I was truly able to hear and process the physical and mental states most people equate with anxiety. They describe a tightening in their chest and an increased heart rate. They have a heightened awareness of their environment and a sense that everything is pressing on them. Perhaps their breathing becomes shorter or more rapid. They feel like they aren’t getting enough oxygen. Their mind starts racing. They freeze and can’t speak or move. Basically, it’s all the symptoms associated with a heightened amygdala fight, flight, or freeze response and more.

But those descriptive physical and mental reactions more or less describe my typical state, the one I had labeled ‘calm and relaxed‘. It spikes every time I have to confront a change or anything unanticipated and manage my reaction. At times sensory input starts to feel more overwhelming or changes suddenly and I have to pull things back under control. It spikes when I’m entering a new group or new situation, so I always have to breathe and adapt. Heck, things spike when I have to make a silly phone call. The sensations spike hard when I sense an interaction going wrong or when I’m suddenly confronted with the reality that it already has. I’ve discussed the racing thoughts with my therapist and they apparently aren’t the same sort of catastrophizing most people experience with anxiety. Instead, I’m either predicting or forecasting things that actually can and often do go wrong based on my own now extensive past experience or I’m stuck cycling through an encounter that did go wrong, especially when I can’t figure out how or why it went badly. That sort of state is again more or less a part of my ‘normal‘. As long as I have things under control and it’s not a meltdown or shutdown, I’m ‘fine‘ by my standards.

And so I came to understand that the correct emotional label for the way I usually feel is ‘anxious‘ and not ‘calm‘. In fact, when I pay close attention to the way people describe anxiety as it is expressed in their body and mind, I realize that my ‘normal‘ would be experienced as an at least somewhat debilitating attack of anxiety by most people. The sensations accompanying my ‘minor‘ routine spikes during any typical day would often be experienced as actual panic attacks by most people, at least if I’ve understood their descriptions correctly. And the things that are truly overwhelming and debilitating for me seem to lie beyond the experience and comprehension of almost anyone who is not also autistic.

So it’s not that anything changed with my physical or emotional state after I was diagnosed. Rather, I realized I was using the wrong emotion word and began using the correct one instead. I always knew my mind worked differently than people around me. Everyone has always been aware that I don’t act or react the same way as most people. But I never realized I actually experience and process the world around me differently than most people do. I related the words they used for their experience of the world to my experience and often used the wrong word or was harder on myself than I should have been. That’s the part of being autistic so many people don’t seem to grasp. This is the only way I’ve ever experienced reality. I have no basis or standard for comparison. The non-autistic experience is as foreign to me as I’m sure my experience is to most other people. Until I work it out through the process of deduction and elimination, I don’t even know what’s different in our experience and what is similar.

Some of the differences between allistic and autistic experience are actually differences in our metaphorical knobs being tuned differently. I was discussing repetitive movements with my therapist and the soothing and calming effect they have. They aren’t involuntary tics, nor are they compulsions in a clinical sense. They are, however, powerful and it requires an act of will to modify or suppress them. But the sorts of things we label repetitive movements are largely not exclusive to autistic or even neurodivergent people. As my therapist noted, everyone uses them and they have the same calming or soothing effect for all people. Twisting hair, tapping fingers, chewing pens, rocking under stress and a host of other repetitive movements are common for every human being. It’s the frequency, intensity, exaggerated range, and sometimes uncommon nature of autistic repetitive movements that stand out. But when you recognize that our ‘resting’ physical and mental state and our ‘normal’ sensory experience of the world around us would likely be considered debilitating by many allistic people, the greater frequency and intensity of soothing movements makes perfect sense. We need more calming and soothing action simply to function.

So yes, I’m anxious, pretty much all the time. I just didn’t know that’s what I was supposed to call it.