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.


Discovering I’m Autistic During the Rise of American Fascism

Posted: August 25th, 2017 | Author: | Filed under: Autism, Misc, Personal | No Comments »

In the past year and a half, my personal self-understanding has increasingly been framed and explained through the lens of my discovery that I am and have always been autistic. That personal journey has been juxtaposed against the national resurgence of fascism, active white supremacy, and neo-nazism respresented and fueled in the mainstream primarily by and through Trump, white evangelicals, and the GOP.  That deeply personal revelation and our ongoing national tragedy have been intertwined in my experience and perception almost from the outset.

You see, I know my history.

For some reason, many people don’t seem to be aware that the Nazis didn’t only target their Jewish citizens. A number may be aware that they also targeted homosexuals. Comparatively few seem to know about the “Law for the Prevention of Progeny with Hereditary Diseases” instituted in 1933. The law instituted mandatory sterilization for people with conditions considered inheritable. That included people with learning disabilities and mental illnesses. And the Nazi propaganda machine began actively targeting disabled people as a burden on society.

And that process of dehumanization culminated in “Operation T4” instituted in 1939. Operation T4 was the name given to the program of euthanizing disabled people. In the first two years, 70,000 people were exterminated, mostly using poison gas. That process of mass extermination was the precursor and test bed for their later “Final Solution”. By the war’s end, an estimated 275,000 disabled people had been killed.

But I really do know my history.

The state mandated eugenics movement originally took root and grew here in the United States. The first state level forced sterilization law was instituted in a state here in 1907. By 1931, 28 states had such laws. The Nazis modeled their law after the laws then in place here in the United States. Those laws resulted in the forced sterilization of over 64,000 people. The eugenics movement was at least partially discredited after the horrors of the Holocaust were revealed to the world. But forced sterilizations still continued in places in the US throughout much of the 20th century.

I knew my history. And I’ve always tried to stand with the marginalized and use whatever voice and attention is afforded me as a white male to help, or at least not hurt, groups with less privilege in our society. But the ongoing process of discovering that I’m autistic has also involved recognizing the way that very identity places me squarely in an often targeted group.

In the not too distant past, that would have been an interesting fact, but less directly relevant for me in my day to day life than for many other autistic people. I am older and well-established. I am white. And I am male. Individually, those all carry weight. Collectively, they are powerful indeed, much more so than an autistic identity I had long since learned to conceal to some degree and with some success from a hostile world.

But my autistic self-discovery has been juxtaposed at every step with the resurgence of hate and politically powerful authoritarianism in this country. Hate requires targets. Fascists and bullies love to target first those they perceive as weak or unable to fight back. As a result, the disabled are often among the first groups targeted. We witnessed ridicule of a disabled journalist first-hand from the candidate himself during the campaign. The GOP has been increasingly targeting the disabled for some time now. And those attacks have often been embedded in policy decisions in many spheres this year, even failed ones like the most recent attack on Medicaid by the GOP. Or rather, their failed attempt as of this writing. I’m not so naive as to believe they’ve given up.

And that reality has been a factor in a number of the choices I’ve made. While I haven’t actually told very many people in my personal life about my diagnosis, I’ve made no secret about it in my online life. I did not create a pseudonym and I’ve clearly published that fact in my various profiles. And I’ve created an online autistic footprint that cannot be retracted at this juncture. Work has an official coding system which is voluntary and kept in confidence, but used for aggregate reporting purposes. I updated that information. Those and similar actions place me front and center. If and when they come for disabled people in earnest and with targeted policy, I intend to be standing front and center. They will damn sure have to come through me if I have anything to say about it.

Or at least that’s my hope and intent. I have no illusions about my individual strength, power, or ability. I fade quickly in crowds. I’m confused and easily contained, at least in the immediate term, by direct confrontation. Hell, most days it’s a personal victory for me to overcome whatever resistance, anxiety, or fear makes it so hard for me to make a damn phone call. I’m not really a hero or defender, at least until or unless you threaten my children.

But I can write. Words are my tool and my soul. And I can place my name and my autistic identity in the public sphere. I can preemptively make myself a target who will be difficult to ignore when they do come for those with developmental disabilities. I don’t necessarily feel disabled much of the time, but that’s the appropriate socially constructed box for my identity. And the fascists don’t and won’t care how I feel.

I’m also not under any illusion that my actions will make a difference. I’m just one person. I’m just one voice. And while it helps immensely to be a white male in our society, it won’t magically amplify my voice or confer power I lack.

So why be public at all?

It’s something I can do. It will likely have little, if any, impact as our national descent continues. It’s not the only thing I can do. I can continue to write letters to Congressmen who will ignore them. I can donate where I think it might help. I can continue to vote. But I’ve lived an autistic life without the benefit of a descriptive label; I simply believed I was broken and deficient. Having discovered that I’m not alone, in a sense affirming that I’m really human, I want to stand with that group, whatever the cost.


Optimal Outcome for Whom?

Posted: August 12th, 2017 | Author: | Filed under: Autism, Personal | No Comments »

Autisticzebra recently published a post: We do not outgrow our autism. On the surface that would seem self-evident. Even though we still know relatively little about how the brain actually works, we do currently know that autistic brains are wired and function differently from typically developing brains in a number of significant ways. It’s too soon to say we actually understand what those differences mean, but they do exist. And there are likely other structural differences we have yet to discover. In many ways, neuroscience is still in its early childhood as a field of knowledge. The human brain is enormously and in some ways irreducibly complex. The whole in this case is not merely the sum of the parts.

Given that, it should be self-evident that an autistic person can’t outgrow autism. While the brain is very flexible and can reroute function, adapt to damage, and can learn to operate in different ways, the functional aspects that lead to autistic thinking seem to be pervasive, not localized or limited. One problem, of course, is that we have a bifurcated view of autism today. On the one hand, we recognize that it’s neurodevelopmental and tied to the development and structure of the brain. On the other hand, we define and diagnose autism primarily through externally observable behaviors. And behaviors can often be changed. While changing behaviors can and does alter the ways the brain routes and handles signals and can enlarge or shrink specific areas, some overarching aspects of the structure of the brain remain the same, at least when it comes to autistic wiring.

It’s in that context that studies are performed such as Ratings of Broader Autism Phenotype and Personality Traits in Optimal Outcomes from Autism Spectrum Disorder. I would argue that ever stating that such individuals have “lost their autism diagnosis” or even as the study states, “no longer meet diagnostic criteria for ASD“, is actually a misrepresentation of the DSM. The diagnostic criteria for ASD all explicitly state that diagnostic behaviors have manifested “currently or by history” and the DSM explicitly requires that the “symptoms” have been present from early childhood. The DSM does recognize on some level the neurodevelopmental nature and lifelong persistence of autism.

With that said, I understand what the researchers are referencing, even if I think there’s a problem in the way it’s phrased. It is certainly possible for at least some of us to alter our behavior to the extent that, to an external observer, we do not recognizably display the visible markers of autism. I know that’s true because I did it. The “optimal outcome” for autistic children represents my personal lived experience.

There are, of course, some differences. There were no diagnostic criteria for autism when I was born. To the limited extent autism was recognized at all, it was considered a very rare, debilitating type of childhood schizophrenia and those so diagnosed were typically institutionalized. Therefore, I never received any “therapy” specifically for autism. I never knew my experience of the world even had a label. I never knew anyone else like me. As a result, the things I did were largely self-directed. I combined a not insignificant, but also not awe-inspiring intellect with a particular interest and focus on people around me to develop my own compensations.

However, that sounds too dry, rational, and clinical while my reality was anything but. I experienced a world of massive unpredictability where people could and did threaten and harm me for reasons I didn’t understand. Fear was therefore a motivating energy. But beyond that fear, the primary driver behind everything I did was a deep understanding that on some basic level I wasn’t like other people. The things I did failed to elicit the sorts of responses I saw going back and forth between other people. And others also recognized I wasn’t like them and responded accordingly.

I felt broken.

I need to let that truth stand by itself. When I peel back the layers of hurt and pain, my deepest experience and understanding of my place in relation to the world was that something was fundamentally wrong with me. And I was driven to hide it. No matter what I did, I never felt any less broken myself, but I didn’t want that brokenness exposed to others. That’s what I’ve been digging toward in counseling, I think. Here’s the way I wrote it to try to articulate it with my therapist.

I didn’t start working on tone, inflection, expressions, body language, and all the rest out of any sort of conscious, logical decision-making process. Rather, I felt like there was something wrong with me and I needed to find a way to fix it. I felt broken. I felt, down to the core of my being but never actually thinking it in words, that the ways “normal” people reacted to me and treated me were justified and caused by my own brokenness. I’ve always believed and internalized that every failure was my fault.

As long as I can remember, other people have not reacted to me as if I were one of them. That’s what fueled the intensity with which I worked to learn how to respond like they did to each other. It’s hard to describe what it’s like to know, and have repeatedly confirmed, that in some way you’re not like any other person you ever encounter. You feel almost like Pinocchio, that you aren’t a real person.

By the time I entered high school, I had largely succeeded in my endeavor, according to some definition of success. I continued to make significant strides after that point, but looking back I would say everything else was more incremental improvement than major substantive change. Even my mother has said she thought I outgrew the issues and problems I had had in childhood by the time I became a teen.

I think what I did and what is described in the literature as “optimal outcome” is qualitatively different from what most autistic people mean by masking or camouflaging. Rather, what I did was and is pervasive. I never stop doing it, even in most respects when I’m alone, though the intensity obviously is greater around others. It’s almost, but not quite, automatic. It’s never completely unconscious, but it’s not usually fully conscious either. If you have to actually consciously think about how to react in a social situation, it’s hard, and I would say probably impossible, to do so in a way that doesn’t markedly stand out to others. You have to internalize all your strategies and coping mechanisms. You have to make the part of your brain enforcing them powerful enough to dictate behavior. You have to become the mask.

And, even after internalizing everything, you still aren’t actually like “typically developing” people. That’s one truth evident, at least to me, in the observations from the study I found and referenced above. Even to removed observers some distinct differences between typically developing (TD) and optimal outcome (OO) children were apparent. And that’s been the story of my whole life. I may not appear clinically autistic in most settings, but other people still never quite treat me the same way they treat everyone else. They may not even notice, or perhaps only feel that something is ‘off’, but it’s painfully apparent to me.

From the study, I’m not sure exactly what’s behind the increased extraversion among the OO group, but I remember going through that phase throughout my teenage and young adulthood years. My wife recently commented that when she met me and for the first years of our marriage I talked all the time about everything. And she’s right. She first knew me in the tail end of that period. I found a comment in my basic training class “yearbook” where a fellow trainee had commented that I “sure talked a lot”. At some level, perhaps, it’s easier to manage the flow of the conversation when you’re speaking, though also from the same study, the OO children still had a hard time keeping the conversation focused. And in addition to getting sidetracked, OO people still “info dump” to some degree.

However, I found the “less reserved, shy, and inhibited” markers for “extraversion” in the study the most telling. Because it’s not simply that I talked a lot. The nature of my “conversation” was also qualitatively different, though I didn’t recognize that fact at the time. If I felt at all comfortable, connected, or even striving to connect with people around me, I had few, if any, filters on my speech. I would share things about my history, experience, and feelings without the normal inhibition that most people feel. I don’t know that I can put my finger on why that was true, but it was. Perhaps I had devoted the part of my brain normally involved in that sort of inhibition almost totally to managing social interaction, both through active performance and by inhibiting behaviors that detracted from it. Perhaps I spoke more out of a need to make connections. Maybe it was both of those and more. But I can see I lacked normal inhibition.

And that wasn’t good at all. It’s not just that I was vulnerable to manipulation and abuse because I couldn’t read the intent of other people toward me, though that’s certainly true. I also gave them all the information they needed to use against me on a silver platter. I gave them facts, history, preferences, inclinations, experiences, and feelings without any real effort on their part. I was already vulnerable and I actively made myself even more vulnerable and exposed.

I can still be talkative and assertive in conversations and social interactions, though that skill has become somewhat less accessible to me over the years. But I began to develop very strong filters on the things I revealed. However, even those filters don’t seem to function the way they do for “typically developing” people. I had to internalize the fact that revealing things that can be turned against me is bad by internalizing that all topics that are later used against me in conflict, abuse, or manipulation must be inhibited. But that process applies to everyone around me, no matter how close they are or how I feel about them. Take a moment to think through the implications, and I believe the negative side of that process is self-evident. Over the long term, I’ve filtered more and more with those who know me and the intense filtering has made it increasingly difficult to form new connections.

The observable differences between OO and TD groups in the study on remaining calm in a tense situation and being relaxed and handling stress well (with the OO group being noticeably worse) also makes perfect sense to anyone who is autistic. No matter how open, agreeable, conscientious and stable I can make myself appear, I am always in danger of being overwhelmed, I’m not really relaxed at all, and stress is a constant challenge.

The broader results make sense as well. The OO group was less likely to make conversation just to be polite than the TD group. The OO group had more pragmatic language difficulties than the TD group. They were more likely to get sidetracked in a conversation, lose their original point, and talk too much about some topics. Unsurprisingly to me, the OO group was more animated and less likely to use a flat or monotone voice than the TD group. They are more animated because they’ve practiced and focused on it more and have internalized a flat or monotone voice as a negative behavior that must be suppressed and avoided. How do I know that? Again, I lived through making those changes.

The OO group appeared similar to the TD group on rigidity, though the OO group was more likely to keep doing things the way they were used to doing it even if they knew a better way existed. Again, that makes perfect sense to me. It already takes a ton of effort to appear relaxed and flexible when you’re anything but. Why change something that works and which you’ve already learned?

So how does this optimal outcome play out over a lifetime? I can’t tell that anyone has truly studied that question, but I know how it went for me. Initially, I was highly vulnerable and abused or had others take advantage of me multiple times over the course of a decade of life. I had limited ability to establish true lasting connections with others and even when I did I had very limited resources or methods to repair inevitable relational damage. And over time, everything became overwhelming. What specifically was overwhelming me? I have no idea. I’m still working on that question. But I know it became harder and harder just to get through every day. And I internalized that as failure and proof there was something wrong with me and was driven to try to hide my struggle. Obviously, that made things worse and didn’t help at all. Externally, from the perspective of an observer, I checked all the boxes we expect for a “successful” life, though those boxes are primarily related to work and the benefits that flow from a stable income.

But I mostly never felt it.

And there is one other key difference between the children in the study and myself. While a ton of negative forces, internal and external, may have pushed and driven me, ultimately I decided how to approach and change each aspect of my behavior. I wouldn’t say all the impetus was internal or even fully conscious, nor do I want to overstate my volition, but I did have considerable agency in the specific choices I made and the self-training I undertook. I can’t imagine what it would be like to have those choices and that training imposed on me externally, especially by the very people on whom I relied for basic survival. As chaotic as my childhood was, that strikes me as even worse.

In order to achieve the state described as an “optimal outcome”, a person has to internalize the belief that at some level their survival depends on hiding their differences and looking like typically developing people. A child is not likely to explicitly or consciously think in those terms, but that’s the level of focus and energy it takes for an autistic person to develop and maintain a near-typical face. For me, I internalized the sense that I was broken and that I had to at all costs hide my brokenness. Any “failure” on my part reinforced that sense and made it stronger. I internalized the failures and never even really felt the “successes”. And if people didn’t treat me well, it was on some level experienced as nothing more than I deserved.

My way is almost certainly not the only approach that can be internalized sufficiently to produce an “optimal outcome”, but I don’t see any healthy, positive approach that will produce the same result. If you are even somewhat okay with the human being you are at your deepest levels, you will never be able to disguise all your many differences from everyone around you almost all the time. And that’s what the “optimal outcome” requires. It’s not masking at will or when circumstances demand. It’s managing and monitoring every behavior and every interaction all the time and never, ever stopping. It’s taking every failure and building it into your internalized system to try to avoid repeating it. And all that has to happen mostly on a semi-conscious or subconscious level like the details of driving a car. If you have to think about it too much, you won’t be able to actually do it.

And the whole time, you will still be autistic.

And that’s the basis for my plaintive, tear-filled question:

Optimal outcome for whom?

 


I Am Not Alone

Posted: August 3rd, 2017 | Author: | Filed under: Autism, Personal | 2 Comments »

I created a storify of a twitter thread about a month ago shortly after I wrote it. Aria Sky (Mamautistic) gave me permission to include her tweets in the story since I think our side conversation expands and deepens the point I was making. The thread revolves around this thought from one of my personal journals condensed and expressed in a single sentence.

It’s hard to describe what it’s like to know and have repeatedly confirmed from a very young age that in some way you’re not like any other person you ever encounter. You almost feel like you aren’t a real person.

It’s never been a secret to anyone who has ever known me that my brain doesn’t work the same as most other people’s. It’s certainly been no secret to me. I’ve had tests of all sorts from a young age. Educators found me ‘interesting’ and wanted to understand me better. I had issues with speech and saw a speech therapist for a few months when I was four. I had early issues with inconsolable ‘tantrums’ (which would likely be labeled ‘meltdowns’ today) and saw a therapist for them, again at a young age. But most of the interest adults took in me revolved around my unusual intellectual capabilities. Looking back, I realize it wasn’t just because I tested well or had unusually advanced language capability. The way I learned, processed, and integrated information was different and adults tried all sorts of tests over the years to try to understand why. I didn’t really mind, though I knew what they were doing even when they tried to call it ‘games’ or something similar. I often enjoyed their different approaches to testing. I believe the results always confused them more than anything else. I may explore that aspect more in the future, but let’s say for now that I’m not surprised recent fMRI studies have shown considerably more symmetry in the density of connections in both brain hemispheres of autistic participants than in “typically developing” participants (who tend to have more densely concentrated right brain connections). I’ve also mentioned that people at work have tried to figure out how my brain worked differently for decades. I’ve worked with highly intelligent, technically proficient, very capable people over the years. And even so, I’ve done things again and again that they could not.

Despite all that autism was never on anyone’s radar, probably because of my age and the fact that I was well into adulthood before any real understanding of autism even began to develop, not that we still have much actual understanding of how autistic minds differ. Moreover, despite all that it somehow never occurred to me that my difficulty understanding other people, learning and employing social nuance ‘on the fly’, interpreting intentions and attitudes toward me, and the social isolation, pain, and fear those difficulties instilled were connected to the different way my brain functioned. Specifically, it somehow failed to occur to me that everyone else was perceiving and reacting to social information in a completely different way than I was. I assumed their internal experience was similar to mine. I just thought they were better at handling it. I felt broken or damaged.

I’ve always felt alone in a way that’s difficult to describe to anyone who hasn’t also experienced it.

And that’s perhaps the single most personally vital bit of knowledge I gained when I learned I was autistic. I am not alone. I don’t know that I can describe how that feels or what it means to discover that truth when you are fifty-one years old. I had mostly given up and was simply surviving and pushing through each day by force of will for the sake of the people I loved who depended on me. My twitter thread tried to express at least some of what that has meant to me this past year.

Nor am I the only one who has experienced that deep sense of isolation. The Autistic Zebra wrote about it here. Alex Haagaard published What it means to finally ‘fit’. Their article focused on why identity labels can be so deeply important to some people. It contained this, to me, deeply relevant statement.

You do not know what it means to grow up feeling utterly alone, worthless and unsafe. And so you do not know what it means, after years of feeling like that, to find a space where you do fit.

That’s precisely what it meant to me to discover I was autistic. It doesn’t really matter to me that I’m not personally, directly connected to other autistic people the same way I am with my family or with coworkers or with people in my other social contexts. The ‘autistic‘ label is important to me because it defines a space filled with people who are like me in ways that aren’t true anywhere else. That doesn’t mean I need to somehow surround myself with other autistic people in my day to day life. I’m pretty tough and I’ve handled living in spaces where I don’t completely fit my whole life. Nor do I want to somehow escape non-autistic (or allistic) people. In fact, a number of them, starting with my wife and partner for the past 27 years, are the most important people in the world to me.

But I now have a space where I can ask if anyone else has experienced something or if it’s just me, a question all human beings ask at one point or another, and get an answer different from the one I’ve heard all my life. Until now, the implicit or explicit answer I’ve always received is that it’s just me. Nobody else really experienced the same thing. When I ask other autistic people, though, I tend to receive a chorus of “Me too!” responses. There’s finally that space where I do fit. And that’s the feeling I tried to capture in my thread below.


Chance Encounters

Posted: March 21st, 2017 | Author: | Filed under: Autism, Personal | Tags: | No Comments »

This weekend my father-in-law was in the hospital again. His memory care facility thought he might have had a stroke. It turned out to be something else, but they kept him to observe his cardiac telemetry and have it reviewed by a cardiologist. Decades of work have trained my system so I tend to wake early and function best in the morning, so I tend to take that part of the load for my wife. Since that’s also when doctors often make their rounds, I tend to handle a lot of the interaction with them as well. While being ‘on’ and interacting with strangers is draining for me, hospitals are a setting where hyperfocus and alexithymia function as a clear advantage. I also never get ‘bored’ the way people describe it, so I’m able to take the long stretches of tedium mixed with bursts of activity in stride. It can be a challenge for me to make sure I ask all the questions that need to be asked and remember all the verbal information that’s shared, but somehow that’s always been easier for me when it’s about someone else than it is when it’s for myself.

Draining as the hospital experiences are, I’m often better equipped to handle lengthy periods in that setting than my wife. I have less emotional involvement when it’s her father, but even when it’s my father in the hospital, I’m able to set that aside and deal with the emotions later. I can even do that to a degree when I need to focus and process when it’s been my wife in the hospital. I never had a name for it until I was diagnosed and discovered a high percentage of autistic people are also alexithymic. I think I can see now why people are always asking how you feel in those situations. For most people, the emotions overwhelm everything else. It’s not that I don’t have emotions and often quite a swirling mess of them. In fact, if I allowed my emotions free reign, they would likely overwhelm me too. It’s more that it takes real effort for me to perceive those emotions as anything more than an undifferentiated tangle of energy. And I can turn that focused effort toward something more productive in the moment and simply use the energy to keep myself moving forward. Identify what needs to be done. Do it. Identify what needs to be done next. Do it. Rinse and repeat until the crisis is over. And when no action is required, wait. I noticed this time in particular, though, that my redirected focus apparently does alter my affect and makes those who know me well, like my wife, uncomfortable.

On the last day, my father-in-law had a student nurse working with him as well. And she’s the one who helped take him downstairs with me when he was discharged. Along the way, she asked what I did and I told her I was a programmer. (Although that’s not, strictly speaking, what I do on a daily basis anymore, it will always remain my primary occupational identity. And it’s a lot easier to explain to someone who isn’t technical.) She asked what I did, which is a massive question, especially with my 30+ year history with computers and technology, so I kept it general. She then told me that her 12 year old son really enjoyed the snippets of access to programming he had in school, but there wasn’t a full class focused on it at his age and she wanted to know if I had any recommendations.

Of course, as anyone knows, that’s a huge question and with no idea where her son’s interests were focused, a tough one to answer. Then she added something to the effect that her son was on the autism spectrum, but he was “high functioning”. In the moment, I simply responded, “I am too. I was just diagnosed last year.”

She didn’t skip a beat and went on to explain that programming seemed to really interest him, but she didn’t even know where to look for resources. None of my kids have ever been interested in technology and computers the way I am, so I’ve never had to think in terms of what would help a preteen and young teenager. Nor did I have time to ask many questions. I mentally ran through modern programming options and decided that an autistic kid who had shown enough interest in the topic that his mother was asking strangers for advice would likely want to dive into a real language. At the same time, it would need to be one that was accessible to a beginner and for which there were a lot of tutorials and resources online in multiple formats since I had no idea how he best absorbed information. So I recommended that she search for python tutorials. It’s a language with which you can do just about anything you want and it runs on pretty much any modern platform. Moreover, there are free tutorials and classes available online in written text, interactive formats, and videos. (And probably other formats as well.) It should be possible to find something that fits his learning style.

And then it was time to take my father-in-law back to his facility. Will that brief encounter end up helping the woman and her son, even a little bit? I have no idea. If her son does have an interest in programming, python is a pretty accessible language. Will disclosing that I was autistic  to her help? I hope it does, but again I have no way to know. There’s very little representation of autistic adults out there today. And 51 year old adults, autistic or allistic, are rarely much like they were when they were 12. Experience and age do make a significant difference. I know parents today hear a lot of frightening stuff about autism. Given that, I hope it helps the mother that the random person she approached for advice was also autistic.

I’m not sure if I’m having more chance encounters with autistic children or parents of autistic children since I was diagnosed or if I’m just noticing each encounter now. Were these encounters off my radar before and therefore didn’t stick in my memory? But now each such encounter stands out as significant to me? Or are people disclosing to me now more than they did before? I truly have no idea, but it’s not like I have an autistic sticker on my forehead.  For whatever reason, though, I’m certainly aware of more encounters now.


Don’t Get Stung by the Should-Bee!

Posted: December 3rd, 2016 | Author: | Filed under: Autism, Personal | 4 Comments »

I have an issue with verbal communication; sometimes my words fail me. I tried to describe the experience of “losing my words” in an earlier post when I first discovered it’s something that happens with other autistic people too. I’m not sure that I conveyed the pain and frustration associated with those experiences, though. After all, words are usually my friends. I can verbally express complex ideas and concepts. I write. Words are one of my primary tools for doing life as well as my friends — until my words abandon me, which is often when I need them the most. Sometimes it’s like my brain freezes and I can’t come up with any words at all. Other times, I have many thoughts, sometimes so many racing so quickly that I can’t “catch” one to speak. Other times, however, I can mentally construct what I want to say, but I can’t get the words out. It’s as though the switch from my brain to my vocal chords and mouth flips off and I can’t flip it back on.

Most of my life that has been not just frustrating, but in many ways frightening. I had no idea I was autistic and I did not know it was something other people experienced. Learning that I’m not alone has helped with that aspect, but does nothing for my own sense of frustration and even pain. I’ve learned over the years to cover and hide my loss of words in many situations, but there are times when it simply can’t be hidden. For example, when your partner is trying to have a serious and deep discussion about something, asks a question, and you can’t speak, there’s no way to hide it.

This week I was trying to describe how that felt to my therapist. I described what seems to happen. Then I launched into a litany of all the ways I excel with words and some of the different things I have done, even very successfully done, with words. Finally I said, “I know I should be capable of responding in those situations!”

My therapist said, “You should be? That’s a very harsh and judgmental thought. Try something for me. Say ‘I wish it was easier for me to speak in all situations.’ Go ahead.”

I did and she asked me how that felt, and if I noticed a difference. And, surprisingly (to me), I did. I hadn’t really noticed, but as I was describing my frustration over losing my words leading up to expressing how I felt it’s something I should be able to do, my chest had gotten tight and my shoulders tense and weighted. As soon as I said, I wish it was easier for me..., my chest felt like it opened up, my shoulders relaxed and I felt like a weight was lifted off me. The difference was dramatic and immediate. I really was surprised at the difference.

My therapist continued, “You’re pretty amazing. You were never diagnosed. You didn’t get any specific therapy for autism to help you. You learned, mostly on your own initiative, how to modulate your tone and inflection, you practiced expressions, you studied acting to learn body language, and you constantly studied interactions between people to learn a complex set of social rules. Most people pick all that up automatically. It doesn’t come naturally for you, but you still managed to learn a lot of it largely on your own starting as a pretty young child. You’ve also overcome some very hard and difficult experiences in your life without breaking. You’ve been with your wife for 28 years. You’ve raised children together. You’re successful in your career. You have friends. There are problems and ongoing challenges, certainly, but don’t lose sight of everything you’ve managed to do. Many people, autistic or not, don’t do as well as you have.”

She went on to explain, “Thoughts that you should be able to do something are typically tied up with shame. When you think that, you are saying there’s something wrong with you and thoughts like that are never helpful. They just weigh you down. Some things are hard for you and it’s okay to acknowledge that fact and wish they were easier than they are. But beating yourself up because it’s hard will just make it worse.”

And she shared with me a little cartoon image she had drawn to use when working with children. It was a drawing of a very angry looking and aggressive bee with the title, “Don’t Get Stung by the Should-Bee!” It may seem like something small, but I found it very helpful. And I’m certain I’ll remember the image of the Should-Bee going forward.

I don’t know if anyone else struggles with those sorts of thoughts, but I needed to write about my experience to better process it. And I decided to share that writing publicly in case someone else might also find it helpful. Stay away from the Should-Bee. He’s a mean one.


How Racism Really Works

Posted: November 21st, 2016 | Author: | Filed under: Personal | No Comments »

In the wake of the election, in which His Fraudulency (to borrow the title bestowed on Rutherford B. Hayes) won the electoral college while losing the popular vote in dramatic fashion, I wrote a thread on twitter about racism and how it actually works. I thought it was particularly apropos since His Fraudulency ascended to his golden throne by explicitly invoking and inciting neo-nazis and other deeply racist segments. However, many of his white votes came from segments that, strangely, do not consider themselves racist, including white evangelicals. Since the latter only exist due to explicit racism, that’s a little odd. Perhaps they even believed their recent disavowals of their racist roots. This election laid those roots bare, however, for the world to see, even if white evangelicals have eyes, but cannot see, and ears, but cannot hear. They have mouths and can speak, but those mouths are the mouths of vipers.

At at any rate, I wrote this thread for those honorable souls who believe they are not racist despite voting in overwhelming numbers for his Fraudulency, the Donald. It received a fair amount of attention on twitter, so I storified it.

This is the twitter thread for those who want to read it in its original form and the interaction it received. The storify is below. All my fellow whites, including the white women who especially let us all down, know that I’m speaking to you. If you voted for Trump, you are racist, at least in the structural and systemic sense, and this thread definitely applies to you. You are no less culpable than the whites who benefited from apartheid in South Africa, even if they didn’t explicitly support the regime. And if you didn’t vote for Trump? You still probably have a racist thread or two permeating your thoughts. It really is the air we breathe. It requires constant vigilance and effort to combat. If you aren’t fighting it, then you’ve succumbed.

 


The Struggle to Be

Posted: October 28th, 2016 | Author: | Filed under: Autism, Personal | Tags: , , , , | 3 Comments »

My counselor asked a question yesterday that stumped me. “If you had a magic wand, what you would want your life to be like?” Those sorts of questions have always been a challenge for me. I can imagine, even vividly imagine, all sorts of alternatives. In fact, I did that as a child, picking a point in the past and then focusing my mind on the idea that everything since that point had been a dream. But such questions always have a sense of unreality to them for me, especially the older I’ve gotten.

This is the life I have. A ‘me’ who had a different life wouldn’t actually be me. It’s a version of the disconnect I’ve felt when I’ve heard other adults who were teen parents say they regretted it, missed the life they could have had, and wished they had done something else. Was it hard being a teen parent? Sure. Sometimes it was incredibly hard. But saying I regret it or I wish it hadn’t happened feels to me like saying I wish my oldest daughter had never been born. In fact, if you follow the thread of my life, it’s basically saying I regret all my children. While I might have still had children, those hypothetical other children wouldn’t be the ones I actually have today. I deeply love all my children, and no matter how hard things have gotten, there has never been a day I’ve regretted their birth.

And the same is true of the rest of life. There’s good and bad. Some things are hard. There have been and continue to be struggles, but I don’t want a different life, per se, though I do want to live this one better. The bad things are just as much a part of who I am today as the good.

I was reminded of my blank-faced stare when my wife has asked me what I dream of doing now that the kids are grown. I enjoy discussing possible future trips with her. I enjoy doing things like the arts and food scene. But I don’t have a ‘bucket list’ or some similar set of dreams I need to achieve to make my life complete. And I have a hard time understanding the point, even though everyone around me seems to intuitively grasp it. If there’s something you want to do, start making a plan and then execute the plan. Until you’re ready to do that, what’s the point in creating a list? (Now lists that you actually plan to complete I totally understand, but that doesn’t seem to be what most people mean when asking about future dreams.)

Still, I stopped and gave the question serious consideration and, haltingly, honed in on one of my underlying struggles. I’m not really dissatisfied with my life. I want to improve my relationships with my older children. I need to work out how to relate better with my wife. I’m not a super social person, but I know I’ve been happier in the past when I’ve had at least one pretty close friend. That’s true even though it hasn’t happened very frequently and all such friendships have tended to fade for reasons I still don’t really understand. And my friendships have faded even when I’ve actually tried as hard as I could to keep them going.  While aspects of my job are extremely wearing, I enjoy the technical challenges it presents. I love learning and my job basically demands constant learning.

There aren’t really any drastic changes I would make to my life, magic wand or not. For the most part, this life fits me. That is, it would if I could actually live it. And it’s with that realization, I understood one aspect of my struggle.

It’s taking all the energy I have, and on some days more than I have, just to survive. Everything seems to require more effort. It’s hard to focus my attention without getting distracted. It’s hard to keep everything organized. And it’s harder than ever to limit the pull of things that aren’t part of what I need to do in that moment. Dealing with change and interruptions to routine are more difficult to manage now. It takes more effort to maintain an appropriate physical presentation and not do things that appear ‘odd’ to most people. I struggle more and more to process things I hear. The delays in my response are almost always noticeable now. Light is increasingly painful. Bright sun is barely tolerable even with my sunglasses and hats. Night driving makes it feel like headlights are stabbing into my eyes. And even in one on one social interactions, I find I often can’t keep up. Trying to catch all the social cues and provide the right responses has become incredibly draining.

Moreover, it’s been getting worse for a long time now, even though I had no idea what was happening. A decade ago I discovered I had sleep apnea, so I blamed my struggles on that. And I’m sure it was a factor, but it was exacerbating the problem, not causing it. Moreover, once it was controlled, things started sliding downhill again. Then I thought it was the damage I suffered as an undiagnosed celiac. And again, I’m sure that was a factor. Being sick and chronically malnourished will drain your energy and make life difficult. But it’s been seven years, I’m pretty much healed, and celiac disease is no longer a significant factor.

Yet I’m still hanging on by my fingernails. By the time I do the things I have to do each day, I’m so exhausted I’m asleep almost as soon as my head hits the pillow. (Staying asleep is another matter, altogether, but that’s not the point of this post.) I’m hardly managing anything more than the minimum I need to do to get by and even that’s a struggle most days. I’m so deeply tired down to my bones that even the thought of that next thing I need to do often fills me with dread.

Objectively, while crises still arise as they do for all of us, my life is actually calmer now than it ever has been in the past. It’s not like things have gotten harder and it’s taxing my ability to cope. Things have gotten easier. I’ve gotten healthier. And simply living life has gotten harder for me. Each day is a hill and the hills keep getting steeper with no respite and no end in sight.

I don’t know why simply being has gotten so much harder than it once was. But if I had a magic wand, that’s where I would apply it. Unfortunately, no such wand exists, so I’m left looking for more mundane responses. My tendency, of course, is to simply push through. I have a relentless will and I can and have pushed myself when I thought I had nothing left. The problem, of course, is that the well is finite. At a certain point, I can’t just bull through anymore. And I feel like I’m reaching a place where something has to give.

I have no answers, but I did come up with a response to the question and, I think, a revealing response. I pretty much have the life I want if I could actually live it rather than just survive it.


What Does It Mean to Need Support?

Posted: September 28th, 2016 | Author: | Filed under: Autism, Personal | Tags: , , , , | 2 Comments »

In my final post, at least for now, on the DSM-5 autism spectrum diagnostic criteria, I wanted to touch on the other elements outside Sections A and B as well as what it means to me to need support.

First, it’s important to note that Section A and B criteria can be manifested currently or by history. That’s why my complete meltdowns at changes in my room at a young age requiring psychiatric intervention are directly relevant. Moreover, elements of the criteria need to be in evidence from a young age. The autism spectrum is related to the way our brains work and it’s pretty much the way our brains are formed in utero. It’s highly genetic, but there’s some environmental influence. However, the environment in this case is in the womb or even earlier. There’s no evidence I’ve found of epigenetic triggers after birth. Since so many of the symptoms relate to active behavior and social interaction it’s usually not evident to parents and others until a child is at least 2-3 years old. And it’s been shown that autistic people can regress and lose skills they’ve managed to learn or have certain behaviors intensify at different points in life.

In order to be diagnosed, the symptoms as a whole must limit or impair everyday functioning in our broader neurotypical world in some way. I’ve probably coped amazingly well from the perspective of some autistic people. I know the counselor I’ve just started seeing often appears pretty surprised at my accomplishments. But as I hope my posts have shown, my functioning has still been limited and impaired pretty severely. We can try to imagine a world where the ways our brains work would not be limiting, but that’s not the world in which we live today. And in our actual world, it’s hard for me to imagine how anyone could be autistic and not struggle to function in at least some areas of their life.

And finally, the disturbances can’t be better explained by something else. In my case, I surprisingly don’t have any comorbidities that reach a diagnostic threshold. It seems that most autistic people at least have something like ADHD as well. In discussing my results, my diagnostician commented that I came as close to “pure autism” as anyone she has ever assessed. So there’s no other explanation for my experience.

And that moves us to the other feature of the DSM-5 criteria. Once you meet the diagnostic criteria, a level of severity for both Section A and Section B must be assigned. And those move from simply “requiring support” at level 1 to “requiring substantial support” at level 2 to “requiring very substantial support” at level 3. And that’s quite a range. It includes people like me who can mostly function independently all the way to people who require around the clock care.

I’m diagnosed at level 1 for both sections, so I’ve been reflecting on what it means for me to require support. In order to do that honestly, I’ve had to revise my own self-image. I’ve always considered myself highly capable and competent and I am in certain contexts. But I’ve also never lived alone for any significant period of time and if I’m brutally honest with myself, it’s not at all clear how well that would go. I’ve always had people who, even in an abusive relationship like my second marriage, still helped me manage day to day life. I’ve relied on my wife for most of my adult life (28 years, 26 married) far more than I’ve ever admitted or acknowledged even to myself. Could I have survived on my own? Probably? I think? But without that daily support, life would have been immensely more challenging. My life was undeniably something of a mess when she entered it.

And I’ve also received informal accommodation in different ways at work. I never thought of it that way. I just considered it negotiating the environment that would allow me to produce more effectively. And the results have been … impressive, I guess. When I get the circumstances right, I can accomplish quite a bit, which is probably why my employer has usually been fine with my idiosyncrasies. Results really do matter in my field. But it wouldn’t be honest to say I could have done what I’ve done without the support from those informal accommodations. I truly needed them in a way, again, that I never really acknowledged to myself.

It’s humbling to realize how much you’ve minimized the support you needed in daily life and exaggerated your self-sufficiency in your own mind. Nevertheless, I have to acknowledge that the description “requiring support” and the details in the associated table form a pretty accurate description of my life.

I do need support. And I always have.


Social Deficits

Posted: September 26th, 2016 | Author: | Filed under: Autism, Personal | Tags: , , | 1 Comment »

The Section A criteria for Autism Spectrum Disorder in the DSM-5 address “persistent deficits in social communication and social interaction across multiple contexts” and all three criteria must be present for a diagnosis. However, these criteria address broad categories that can be demonstrated in a variety of ways. Since much of what I’ll likely write about my experiences in future posts will, I’m sure, reflect difficulties with social interaction, I’m not going to explore each criterion individually in separate posts. Unlike Section B, which took more digging into my history and peeling back my compensating and masking behaviors, the Section A criteria were pretty obvious very early in my assessment. My wife apparently scored them even higher in one of the initial assessment questionnaires than I did. Basically, Section A covers three broad areas.

  1. Deficits in social-emotional reciprocity
  2. Deficits in non-verbal communicative behaviors
  3. Deficits in developing, maintaining, and understanding relationships

Even after explicitly and intentionally studying the rules of social communication for decades, I still routinely miss the mark. Sometimes I can quickly cover the slip based on the other person’s reaction. Sometimes I’m completely unaware of it and only know because my wife asks me about it afterwards. She’s been doing that for most of the 28 years we’ve been together even though neither of us had a clue I was autistic. I was just “socially awkward”. I also rarely know the appropriate emotional response. It’s not that I don’t care. I normally care deeply, even around people I don’t know well. Rather, my own emotional response is difficult to decipher, so my affect rarely reflects what I actually feel. I try to approximate an appropriate affect for the situation, but my success varies. I also struggle to understand what others are feeling. And even when I can work out what I’m feeling and can make a reasonable guess of what the other person is feeling, I still struggle to work out the proper thing to do or say. I have a strong tendency to monopolize conversations or to complete withdraw from them because I can’t tell when I’m supposed to speak or allow another to speak. And group social conversations are almost impossible. I do very well in presentations and public speaking, but those situations have relatively little reciprocity.

I struggle all the time to understand body language and expressions. Despite my lifelong practice at body language and expressions, mine are still atypical at best. When I forget to manage them, they actually convey unintended meanings and emotions I do not feel to others. My eye contact ranges from very poor when trying to say anything that’s hard for me to express to overly fixated when I’m trying to appear normal. It’s rarely typical. I have difficulty controlling my tone and volume. It varies from overly loud to too quiet based on feedback from others. I usually can’t tell myself.

And relationships have long been an issue. The bullying I actually remember from childhood was from people I thought were friends. I remember those all too common incidents because they made no sense. I think I was mocked and bullied by kids who weren’t my friends as well, but none of that sticks in my mind. Those people didn’t matter to me. For instance, there’s the day in, I think, 2nd grade where two of my friends held my arms while the third punched me in the stomach. From my perspective, it came out of nowhere. And it’s one of a number of incidents that have been fixed in my mind my whole life because I could never explain them. Now I at least understand that I missed all the social cues leading up to those reactions. I still don’t understand them, but I know I never will. The information necessary for the full context simply isn’t anywhere in my memories.

I’ve also been taken advantage of repeatedly in my life, sometimes in some pretty negative ways, because of my difficulty in this area. I guess I’m a pretty easy mark for con men. Looking back, I realize my early romantic relationships (including my first two teen marriages) were even more unusual than I had thought. Despite enormous desire and effort on my part, my relationships with my children have had mixed results. I seem to have gotten better at it over time since my youngest two remain close. My relationship with my older children is not what I would like, but I still don’t know how to improve it.

And I realize I don’t have any of the very long-term friendships almost everyone else seems to have. Everybody I know who is roughly my age or older has at least one or two close friends going back decades, often to high school or college. They may live in different places and talk infrequently, but when they do they are as close as ever. And they stay in touch and have for all those years. My father-in-law still keeps in touch with some friends going back 50 or 60 years! Those sorts of friendships are such a common and broadly shared phenomenon, they even come up in casual social conversations. But when I take stock, I have none.

That’s not to say that I have no friends. I think I get along relatively well with people and can move past the casual acquaintance level to one where we share things more broadly. So I can cross that threshold, but most of my friends remain situational. That is, we share a particular social context and get along within the confines of that context pretty well, sharing things about each other that go beyond the immediate context of our connection. But we don’t really connect outside that context, and when the connection through that particular social context ends, we go our separate ways. A few times in my life, I’ve managed to forge a friendship that is deeper than a particular situational context and which has endured on its own for a number of years. And yet, those have all eventually faded for reasons I don’t understand. I know friendships come and go for everyone, but usually there are at least a few that endure for most people.

The one enduring, voluntary relationship I have is with my wife and I’m extraordinarily grateful for her. She’s helped me navigate life and it’s difficult to see how I would be where I am without her. I quite literally can’t imagine what my life would have looked like if she hadn’t been with me every step of the way. My life was certainly a pretty thorough mess before she dove in head first and with her eyes open.

The social issues are where being autistic really bothers me. At this juncture in my life, I’ve developed a pretty good set of tools and supports to manage the restricted, repetitive patterns of behavior and interest outlined in Section B. The diagnosis gives me insight to further refine and improve that toolkit and seek additional support where I might need it. But my very best efforts have mostly just managed to get me through social interactions. I’ve survived, but I certainly have not thrived. And I wouldn’t have tried so hard for so long if it didn’t matter to me. If anything, my diagnosis has opened my eyes and made me realize I haven’t even done as well as I thought I was doing. And I didn’t think I was doing very well at all.

Deficit can be seen as a hard word, but I experience my social issues as real deficits. So I think it’s also an accurate word.