Who’s “In” and Who’s “Out” in the Autistic Community?

There’s an ongoing “discussion” in the online community of autistic people about whether or not those who are only “self-diagnosed” (meaning they haven’t been able to obtain formal assessment, at least at the current point in time) should be included. It’s often expressed as a question about whether or not self-diagnosis is “valid”. Personally, I dislike the language of validity applied to an individual’s identity. We are all “valid” human beings. I’m also more confused by the fight itself than an active partisan for either “side” in the debate. I can’t discern why it seems to matter so much to some people.

VisualVox, the Aspie Under Your Radar, wrote a post on the issue and I left a rather lengthy comment. Upon reflection, I decided I might as well turn that comment into a post of my own. You probably will want to read her thoughts as well, since in places I do reference them.

I’m pretty sure everyone agrees that if you’re going to seek any sort of official support, accommodation, or anything else from the larger NT world for your autistic needs, you’re going to need the official paperwork to support your request. That’s just common sense. I’ll note, though, that it’s possible to negotiate unofficial accommodation. Looking back, I did that for decades at work as an undiagnosed autistic. I would frame it in terms of whether or not something in my environment was interfering with my ability to produce at an extremely high level and ask to have it adjusted. Since the people I worked for always thought it was in their own self-interest for me to keep doing what I was doing, even if they didn’t understand it, they were generally happy to accommodate my ‘quirks’.

But nobody with a ‘self-diagnosis’ is going to be looking for any official accommodation, anyway, since they will obviously know the above. In most cases, my assumption would be that they are trying to understand why they struggle in certain ways and contexts and why they appear to interact with the world around them differently from most other people. And they may be looking for ways to ease or at least better manage their struggles. In order to do so, they are reaching out to the online community because, honestly, where else could any of us have turned? I certainly didn’t have any other ready avenue for learning ways to cope with aspects of being autistic even once I was formally diagnosed. And I needed the information from those online sources to even confirm in my own mind that I needed to seek an assessment.

So I understand what at least most people with a self-diagnosis are doing and it strikes me as perfectly reasonable. Where else are they going to turn if not to the online community? And given the barriers to assessment and diagnosis in different parts of the world and the high bar gender, race, class, and finances can create even in locations where assessment may be available, official diagnosis may not be an option even for people who want it. And honestly, it’s hard for me to imagine that there are many people who wouldn’t want some sort of official validation and confirmation if they could obtain it. I know I was going back and forth in my own mind beforehand. Even on the drive to discuss the results, I was trying to work out what I would do if she told me I wasn’t autistic. And I masked so well (automatically and unconsciously) even during the assessment process that if neurological results (such as the 30 point split in my two core “intelligence” scores) and childhood history (such as constant spinning and pacing and complete meltdowns eventually requiring psychiatric intervention when anything at all in my room had been moved) hadn’t clearly shown autism, I might have ended up with the new social communication disorder diagnosis instead. Since then, I’ve been able to peel back the masking and coping behaviors and find a lot more evidence for the Section B criteria.

So, given all that, I’ve been bemused by the vehement reactions in some corners of the online autistic community against those who are working from their own self-diagnosis. I can’t see any way those who are operating from a self-diagnosis are harming, threatening, or taking anything from those of us with official diagnoses. The online community is an unofficial place to provide and receive information, advice, and support. If someone needs or can provide that, it’s the appropriate place to be. Nobody’s personal story is invalid and it’s impossible to know who will be helped by it if you choose to share it. And in many ways, a self diagnosis is exactly that. It’s a personal story marking their current place in their journey. Honestly, an official diagnosis doesn’t really change that fact. Ultimately, I only have my story to share. Some people may find it helpful. Others won’t. And that’s okay. We aren’t all cut from the same cookie cutter mold.

CDHD (compassion deficit hyperactivity disorder) is a funny way to capture some of the reaction against self-diagnosed individuals. And a lack of compassion may be a part of it. Honestly, I don’t understand the fight response I’ve witnessed. In some cases, it seems that a person may have encountered some people online in the past who claimed an autistic self-diagnosis and were also jerks. I can see how they might end up lumping everyone with a self-diagnosis into the same pot if it happened multiple times or was particularly painful. Of course, there’s no real relationship between the two. All sorts of people in every category can be jerks. Heck, even otherwise helpful and generally nice people can have a bad day and come across as a jerk or even actually be a jerk. (Usually, if you aren’t a thoroughgoing jerk, you’ll recognize your jerkiness later and apologize for it.)

Other than that, though, I’ve been unable to discern what’s triggering the fight reflex for some people. Someone who has assessed themselves may be mistaken; our own lens is hardly free of bias and distortion. But that fact doesn’t harm or threaten me. Moreover, I have no way of knowing whether or not someone has been officially diagnosed unless they choose to share that information. It’s an unreliable mechanism for determining who you will read or interact with. The better gauge, and the one I’ve used in all situations, is simply assessing what they have to say and how they choose to say it. If I find it interesting or helpful, then it’s interesting or helpful. If I don’t find it interesting or helpful, I’ll look elsewhere. But that doesn’t mean that someone else might not find interacting with them helpful. If they are abusive, I will screen them out. I’ve been abused enough in my life. I don’t need to let abusive people in at this point and I’m much better at managing that aspect today than I used to be.

But nothing in that process has any connection whatsoever to the official state of someone’s assessment and diagnosis. I’ve been trying to puzzle out the underlying issue. It just seems like such a strange thing to fight about.

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What Does It Mean to Need Support?

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.

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Social Deficits

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.

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Overwhelming Senses

The final criterion of Section B of the DSM V involves sensory issues.

Hyper- or hypo-reactivity to sensory input or unusual interest in sensory aspects of the environment.

These vary a lot from individual to individual, but I haven’t run across anyone autistic yet who doesn’t struggle with sensory input to some degree. Personally, I have a mix of hyper and hypo sensitivities, but it’s taken a while for me to identify them. I’ve lived with them so long and adapted where I could so thoroughly that I didn’t even think of them as sensory input issues, per se.

Let’s start with the most obvious. I’m very hypersensitive to light and visual input. I wear sunglasses on cloudy days, dusk, and other conditions where most people don’t. And bright light always hurts even through sunglasses, squinted eyes, and a hat brim. If I have to spend an extended period in bright light with no sunglasses, I will develop a stabbing headache. I’m also not fond of the flickering of fluorescent lights and headlights when driving at night blind me and are painful. I’ve learned to look at the painted markings on the road to steer where possible. If there’s too much happening visually it can be hard to focus and visual input will distract me. I can’t talk on the phone while the TV is on. I have to close my eyes or turn away.

I’m both hypo and hyper reactive to sound. I have a tendency to tune sound out and I don’t process verbal information particularly well on first hearing. At the same time, I’m easily distracted by sounds and have difficulty filtering them out when, for instance, trying to work in the office or have a conversation in a restaurant. At work, I’ve used headphones since the early days of the walkman in the 80s.

I’m also hypo and hyper reactive to taste. A few things would make me gag in the past, notably what my diagnostician called ‘silky firm’ textures like mushrooms and tofu. I’ve since trained myself so I can eat them, though I wouldn’t say I really like them. But I also seek out strong flavors. As a child, I would eat whole lemons, rind and all, for the strong sour taste. (Actually, even as an adult, I would squeeze lemon into my tea and then eat the whole slice. I shocked my wife doing that on an early date.) I would also snack on a bowl of iceberg lettuce doused in red wine vinegar. I craved spicy, hot food as well and have always eaten the hottest things I could find. Once, as a ‘joke’, some other kids at a camp brought me back pizza with red pepper flakes piled under the toppings. They were disappointed when I didn’t even notice.

I didn’t think there was anything unusual about my clothing. Sure, I like clothes with no tags and have cut them out plenty of times, but doesn’t everyone? Tags are annoying. But after my initial assessment, I took stock of my wardrobe and realized pretty much everything I owned was 100% cotton, loose, and comfortable to the touch. I had to write my diagnostician back and tell her I had apparently unconsciously compensated for my sensitivity to harsher fabrics by never buying or wearing them. At the same time, I’m also pretty insensitive to changes in the surrounding temperature. I prefer cold to hot, but I’ve been known to wear shorts when others are freezing.

I mostly worked out ways to manage my sensory issues and they aren’t as severe as the ones some people have. But they are definitely an ever present part of my life.

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What makes an interest “special”?

The third Section B criterion for autism spectrum disorder in DSM V reads as follows.

Highly restricted, fixated interests that are abnormal in intensity or focus.

These are commonly referred to as “special interests“, which begs the question: What makes them so special? The parenthetical describes them as “excessively circumscribed or perseverative” or as a “strong attachment or preoccupation with unusual objects“. From my own life experience, which I’ll explain later, I think this also can be intertwined with the first criterion with unusual attachment and preoccupation with and use of common objects, but that stands out much less obviously as a diagnostic criterion. (As an aside, perseveration is one of my new favorite words. It captures so much about my life in a single word thought.)

Apparently, a fixation with things like train and bus schedules are stereotypical male versions of this criterion. One of a number of reasons women are severely under diagnosed is because their “special interests” tend to be in more commonly accepted areas and are distinguished more by their intensity and focus than by the nature of the interest. In that regard (and others), I think I lean a bit more toward the female phenotype of autism than the male.

The difficulty in assessing yourself, of course, is that it’s hard to see where the line between “passionate” or “fascinated” and “fixated” or “abnormal” truly lies. Still, it’s easy for me to see some of them. Science fiction and fantasy have been a lifelong fascination of mine, to the extent that I read little other fiction. (And I tend to only read non-fiction to gather information in an area that is currently one of intense focus for me, so that section of my library is … eclectic.) I’ve had family members chide me for not broadening my reading habits, and I’ve sometimes felt somewhat shamed and tried to read other things, or at least pretended I had. A nickname I acquired in 7th and 8th grade was “SciFi” because I would always have a book with me and would tend to talk about them. At length.

But my books mean more to me than that. I organize different sets in different ways. Some by the size of most of them. Series go together and authors generally belong with all their works. I like hardbound, but where I have paperbacks that go with other books, I’ll lay them on top of the hardcover volumes with which they belong. If you look at my library, it will appear disorganized and haphazard, but there’s actually a beautiful order in its arrangement. I read and reread books in my library, but there’s more to it than that. I need to have all the volumes in a series or sometimes all the works by a particular author, even if I don’t plan to immediately read them all. Any gaps will bother me until I fill them. It’s comforting to be surrounded by my books in a way I’m not sure I can describe. I like to look at them and touch them, but it’s soothing and calming even when I just feel them around me when I’m sitting and working at my computers.

I’ll cull books sometimes that don’t fit or have no special meaning to me, but I never voluntarily get rid of a book unless it’s incidental or a casual read I was given or picked up along the way. Once, as a young teen, my mother decided my “obsession” with my library was bad for me and made me throw out many of my books. That’s still as seared in my memory as many of the things that, to an external observer, appear much worse. It was awful in a way I’m not sure I can describe.

I’ve long had a similar interest in comics, though any time I let myself start collecting, it quickly gets out of control. I’m actually going to have to rein in that compulsion again since I’m getting far more than I have any time to read. But even when I’ve restricted myself from collecting any, I’ve followed the trends and happenings with my favorite characters and the universes they inhabit. I did that in bookstores and libraries and comics shops for some years. The Internet has made it much easier to stay abreast.

Especially when I was young, I was fascinated by games. I would play any game and seek to master its intricacies going back as far as I can remember. When I was in 5th grade though, I discovered Avalon Hill games. They were extraordinarily intricate with detailed, complex rules. My cousin and I would play out games and spend hours designing our own scenarios. We would play all night with no sleep. During that period of time, I even developed my own game which I remember my Dad thought was a fantastic game that should be marketed. Unfortunately, I don’t remember it at all and the board, pieces, and rules have long since been lost in the mists of time.

I dived into RPGs in 9th grade and loved them. I transferred that love to video games. In the 80s, my roommate and friends and I would gather around and play Bard’s Tale on my C64 for hours together. I stayed away from MMOs when they came out because I knew I would get overly absorbed in them. However, when my younger son was in 9th grade, he wanted to play WoW. I let him, but only if I played also so I knew what he was doing. And I loved it as I had suspected I would. After about a year we were both at max level and I joined an adults only raiding guild that was just starting. I spoke with the guildmaster and he agreed to let me son join as well. We kept our relationship quiet until he was 18 and approaching high school graduation. In that time, he had recruited for the guild and helped people improve gear, led raids and pushed his characters in directions they weren’t supposed to be able to go. (His main was a druid and during Burning Crusade, bears weren’t supposed to be able main tank raids. He was very successful at doing so even while leading the raid and coordinating everyone else.) The guild was very surprised when he revealed his age and that he was my son. When he became too busy to play as a sophomore in college, I forced myself to stop playing as well. I know how much games can consume me and I’ve learned to guard against it as I’ve gotten older.

My career has been in IT, which seems like one of the fairly common fields for those on the autism spectrum from what I’ve read. However, I wouldn’t say computers have ever been a particular, focused interest in an autistic sense. I’m fairly proficient in pretty much all major aspects of the field, though I generally tell others I always approach things from a programmer’s perspective first. I find the field fascinating. I enjoy that it requires continuous learning. I’ve accomplished some things over the years that even my highly proficient coworkers consider noteworthy and unusual. I “see” patterns which helps me both visualize ways things could tie together and work and helps me quickly perceive points of failure. But when I assess my life, computers have never held that same intensity of focus. I’m just good at it and generally enjoy doing it, which is the normal best case most of the time with a profession.

There is one corner case exception which actually has had an impact on my career and income. In the mid-90s, we were just deploying IP to replace x.25 at work and I was working with others to set a variety of things up on our development center network. It was alongside my development work, which is pretty normal for programmers. We’re always dabbling in something, or at least the good ones are. In the process, we needed to get DNS working properly for a variety of reasons. At that time, usage on our enterprise network was spotty and erratic and I started working with other technical people across the country to get their varying implementations better coordinated and integrated. Somewhere along the way, I became fascinated by the DNS protocol, its many permutations, its standards, its wire format, and all aspects of it. And as I developed the depth and breadth of my knowledge, I could make better suggestions and everyone just started implementing them. Before long, without any official assignment or authority, I had become the architect for our internal enterprise DNS. Everyone looked to me any time there was an issue, integration requirement, or design question. DNS, of course, has continued to grow over the years and I’ve remained deeply invested in studying it in all its variations, even though for most of that period it wasn’t part of my job.

However, a number of years ago, enhancements to the standard, new requirements, and various mandates created a situation where that DNS architecture at work needed to be redesigned from the ground up to meet those modern needs. Everyone our executives asked told them they needed me to do it right. So I was basically promoted into a job with that as one of my primary responsibilities. It’s not my only responsibility, of course. I always acquire additional responsibilities pretty quickly. For instance, I’m also the technical lead for our IPv6 transition PMO. But it is a major piece of my current job and the primary reason I got it. So in that instance, an interest that has been restricted and unusual in its intensity and perseveration also eventually proved beneficial in material ways.

I’m not sure it’s possible to truly explain to anyone who isn’t autistic the visceral intensity that accompanies an interest meeting this criterion. It’s not just that you really, really like it. There’s a need almost like a hunger that accompanies it. Removing or limiting the interest, which I’ve done sometimes as noted above, is still distressing even when it’s voluntary and intentional. Involuntary restriction can feel intolerable. It can also help immensely when you are overloaded. And again, it’s hard to explain exactly why.

Although I clearly see how this criterion matches my life, I have mixed feelings about “special interest” as the term to describe it. It’s the common vernacular, so using the term provides common ground with others. But the phrase seems to minimize it to me. This pervades your life and it can seriously disrupt it at times. Of course, part of the underlying reason for my reaction might be that I can’t help hearing Dana Carvey every time I see it.


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Mimicking Flexibility

This post continues my reflections on the diagnostic criteria for autism spectrum disorder from DSM V and how they relate to my own life. The second criterion in section B describes a need for routine and sameness.

Insistence on sameness, excessive adherence to routines, or ritualized patterns of verbal or nonverbal behavior.

This criterion was difficult for me to initially perceive in myself. In fact, I had this self-image of myself as highly flexible, adaptable, and able to function even as everything around me descends into chaos. But as I read descriptions and examples of this criteria, I specifically remembered the reason for my earliest visits with a psychiatrist.

I only vaguely recall the details. I know I was four or five years old. But I remember some of it and my mother has talked about it over the years. Around that age, I developed an extreme insistence on sameness in my room. Everything had to be in exactly the right spot. If anyone moved anything at all out of place, I would immediately notice when I entered my room. And I would have a complete screaming, on the floor meltdown. My reaction was so extreme, my mother took me to see a psychiatrist. They were able to work with me and through a process of very slowly introducing very slight changes, were able to help me to learn to tolerate changes without such an extreme reaction.

My childhood was a pretty chaotic one by most typical standards. At least, that’s what everyone usually tells me when they learn some of the details. It’s the only childhood I had, so it’s a bit difficult for me to judge. And I weathered the storm. In fact, I appear to have been less impacted by my experiences than many other people would have been.

But when I really examine my life and peel back the layers, there’s much less flexibility and resilience than shows on the surface. Instead, I insulated myself by developing what I’ll call “micro-routines” and following them pretty rigidly. By making the routines smaller, I could shuffle the sequence or timing and manage macro-scale disorder. So I had a particular routine to get ready for bed. I had a routine for emptying my pockets and a place for everything when I did. Instead of having a single route from start to destination once I could walk or ride a bike to different places, I would have smaller routes to get from one point to another point. So I could appear to be flexible about the route I took from start to destination. But really it was a sequence of smaller routes for me and I remember following those pretty strictly, even down to which side of the street or even the specific path I used for particular stretches.

If left to my own devices, I will still tend to eat the same food for breakfast, for instance, for long stretches of time. I tend to do things in a particular way and can push back against attempts to change it.

And when I reflect on interactions with my family and children, I realize that some of that rigidness has always been evident to them. I can’t count the number of times they’ve told me when going to an amusement park, shopping, or some event that we were just going to relax and go with the flow rather than follow a schedule. I always thought it was a strange thing to say since I considered myself flexible and easy-going. Apparently that has always been less true than I hoped and they knew it even if I didn’t.

I realize I don’t do things without a plan. Instead, I handle variability by developing multiple plans in advance. I develop variations within the context of an overarching plan. So, for instance, rather than a strict schedule at a theme park, I’ll start with the boundary plan. Here’s when we need to leave to get there. And this is roughly when we’ll plan to leave (which might be bounded by a dinner reservation). Then within that context, I’ll break the day up into segments and have alternative plans for each segment based on what everyone feels like doing. Most of the time, when they decide, I have a version of a plan I can swap in and use. And I’m always looking at where we are, the schedule of events, and proposing different variations for people to choose between.

That process of micro-routines and plans within plans allows me to manage the variability of life pretty well, I think. Even so, there are times when life lobs a hand grenade that can’t be planned or managed. When those occur, my approach completely changes. A couple of years ago, in the aftermath of my father’s heart attack, I was discussing my experience with my oldest daughter. When a true crisis hits, my perception of the world around me switches gears. Everything almost seems to slow down as I process and analyze what’s happening. My focus narrows at the same time as I assess the situation and determine the immediate action I need to take. I do that. And then I work out the specific thing I need to do next. And I do that. I keep stepping through each subsequent, specific task or action until the weight of the crisis begins to lift.

My emotional response during the crisis also recedes even further than what’s normal for me. I’m generally aware that the emotions are present and will likely erupt at some point in the future, but during the crisis I almost completely disconnect from them. I now know that’s related to alexithymia. I typically have to work hard to understand what I’m feeling, so it’s comparatively easy to switch that off during a crisis so the emotions do not paralyze or confuse me. It’s probably one of the few times I would consider alexithymia an actual benefit, though my lack of emotional response and affect in a crisis does tend to confuse others.

So I do have a clear childhood history that meets this criterion at a level of severity that impacted my ability to function and required intervention. Since then, although my level of rigidity and need for some sort of plan and routine is apparently more evident to those close to me than I imagined or even admitted to myself, my coping mechanisms seem to be good enough that there’s no significant negative impact in my daily functioning. The ASD criteria guidelines encompass both childhood history and current functioning. So I think I do pretty clearly meet this criterion even though it’s less evident than the other ones.

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Social Interactions, Misunderstanding, Stress, and Anxiety

Hopefully, anyone reading this post has developed some understanding from my earlier posts how being autistic impacts my interactions with others in both directions. In my posts of performance, I tried to walk through some of the ways, even without a specific label describing my difficulties, I was able to train myself from childhood to perform in something approximating a typical (that is, neurotypical) manner. I also explored some of the costs involved.

Even after writing about it, I had no idea how much pain I had stored up until it came out and surprised me when trying to explain things to a therapist I saw for the first time this past week. I found myself losing voice control, losing the linear thread of the events I was trying to describe, and with tears welling up in my eyes. I now understand my difficulties deciphering how I feel are the result of alexithymia. But I can still be surprised when they do visibly surface. And it’s strange. Even though I am clearly evincing the emotion, there’s a part of my brain that still doesn’t “feel” it.  I can “see” that I’m sad and hurt, in fact much more so than I knew, because it’s showing up through physical expression and in my own mental functioning. The therapist even said something like, “This seems very painful for you,” which is a pretty neutral observation. And my response was along the lines of, “It looks like I am, but I had no idea I felt like this until this (indicating the above) started happening.”

And the reasons for some of that pain are difficult to explain to anyone who hasn’t experienced it. That’s why I tried to walk through a more detailed description of a simple social interaction in my post yesterday. I wanted to convey some sense of how much effort goes into even the most trivial of such interactions (making a dinner reservation) and how easily it can still go astray. In and of itself, that one interaction cost me relatively little. But for most people, it would not have involved any noticeable effort at all. Also, everyone sometimes finds themselves in a socially awkward position. Most of the time, people step out of the awkwardness pretty easily, but even if not it remains pretty insignificant. Even so, hopefully that story offered some insight.

Now, take that one simple, highly structured interaction and start expanding it to cover every social interaction people have every single day. Expand until it covers every greeting or casual interaction in public, every conversation, everything required to shop, work, and engage with family and friends. Then try to imagine that you manage those interactions with some degree of conscious effort, that you review many of them mentally to check that there was nothing odd about them, and that you obsess every time an interaction goes badly trying to understand why. And however hard you try, however long you’ve studied or practiced, and however much you’ve prepared in advance, a certain percentage of those interactions will inevitably go awry. Sometimes you notice during it. Sometimes someone tells you afterward. Sometimes you realize it went wrong a day or two later. And you’re always aware that sometimes you’ll never know that an interaction went wrong.

Every interaction is like that.

Every day.

All the time.

I’m monitoring my expression, body language, and tone, trying to ensure they support whatever I’m trying to convey. I’m monitoring the other person’s body language for those clues that I’ve learned to identify over the years. I’m using scripts (or script templates) I’ve developed with a lot of practice. I’m slipping into different roles I know how to perform. While I am doing that, I’m trying to absorb, process, and remember the verbal information being conveyed. If you’ll recall my discussion of the results of my assessment, that’s actually one of my weaknesses. I simply do not retain much uncorrelated verbal information on first hearing, though I quickly improve with repetition.

It’s almost impossible to do that perfectly under the best circumstances, so misunderstandings on both sides are pretty common. Sometimes people react with anger because my tone, expression, or body language accidentally expressed an irritation or anger I don’t feel and didn’t intend to convey. Other times, something else goes sideways. There are so many variables in play that something goes wrong more often than not. I think I’ve gotten pretty good at damage control and am able to rescue or gloss over many of them, at least when I notice.

All of that creates a base level of anxiety that never fades. I’m anxious anticipating social interactions. I’m anxious during them. I’m anxious as I think about the interactions that have finished. Even on the days where nothing “major” happens, I’m expending enormous energy and managing anxiety just to exist in the world. And when a social interaction that actually matters to me goes wrong, I will become paralyzed by fear and anxiety, though I’m unlikely to show much of anything where anyone else can see it.

That’s a glimpse into one aspect of what it means to be autistic, for me at least. Other autistic people likely have a different daily experience. But the social exchanges that everyone else takes for granted are never automatic or easy.

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When “Simple Things” Aren’t Simple At All

The other day I needed to make reservations for myself and my youngest daughter at a restaurant. This particular restaurant doesn’t take reservations online, so I had to call them.

Simple, right?

If only…

It wasn’t a call I needed to make immediately, so I thought about it off and on for a couple of days. Or rather, the thought that I needed to make the call would pop unbidden into my thoughts from time to time. I would acknowledge the thought, “Yes, I need to call and make that reservation.” And then I would start doing something else and “forget” about it.

Then one evening I called up their contact info on my computer screen and left it there for a few hours. Finally, as it neared their closing time, I picked up the phone, took a deep breath, and dialed the number.

A person answers the phone and I run through my script. Reservation. For two. On this day. At this time. And finally, what has become a standard note, “We both have celiac disease and will need gluten free options.”

And that’s when the call goes sideways. He introduces himself and tells me he’s the executive chef and starts describing all the things they can do gluten free. He reassures me that they have a lot of people with celiac disease who eat there and know how to avoid cross-contamination. He asks if I have any questions about the menu. He gives me his cell phone number so I can call if I have any questions. He tells me he would like to come out to our table to talk to us when we get there. I know he’s being helpful and friendly and I respond as best I can. Mercifully, the phone call finally ends.

Here’s the thing. We’ve actually eaten at this restaurant a number of times in the past year. The executive chef even came out to the table and talked to us on one of our early visits. I figured out after the call that I should have mentioned that we had eaten there before when he started describing the menu. Or even mentioned that we had met once when he said he was the executive chef.

But during the call? The only thing I could try to do was keep up and respond appropriately. I had planned to call and make a reservation. That’s the script I had ready. I can handle a little spontaneous small talk along the way. I’ve made allowances in the script. But when the call changed into something else, I just wanted it to end.

So now things are a little awkward. I know that gregarious, outgoing people like this chef tend to remember faces, even though they meet many new people every week. If he comes out to talk to us and recognizes us, he’ll wonder why I didn’t tell him we had met before. He probably won’t say anything, because I’ve learned that people usually don’t in such situations, but still…

And the part that makes it even worse? I know what the “normal” response should have been. When he said he was the executive chef, I should have immediately said something like, “Oh, we’ve met! You came out to our table to talk to us last fall on our first visit.” But I could only identify the correct response after the call was over.

And that’s been my “normal” for my whole life. Even after decades of working on it, sometimes I still completely miss social cues. If she’s present, my wife will usually point that out to me, often by asking why I didn’t respond in a particular way. If not, I will generally work through what happened on my own, though it may have to happen multiple times before I actually notice. I have a lot of practice with that process. And once I understand what happened and what would have been an appropriate response, it will be added to my extensive catalog of social rules. At this point in my life, I know how to respond appropriately much of the time, at least in theory.

Unfortunately, knowing and doing are very different things. I have to recognize and connect what someone says and its context with the appropriate situation. And I have to make those connections in real time on the fly. All the while, I’m trying to monitor my own tone, facial expressions, and body language so they fit the context and what I’m saying. I also need to make sure I react non-verbally to things the other person is saying. I do some of that without thinking now, but it still requires constant vigilance.

I manage to keep up moderately well as long as the interaction stays more or less on script. But when things change suddenly or go in an unexpected direction, I fall behind and often can’t quite catch up. And in this case, I was already more anxious than normal because it was a phone call. (Have I mentioned how much I really, really, really hate making phone calls?)

Discovering I’m autistic explains why it’s so hard for me, and that’s actually helpful in some ways. But it doesn’t make the process itself any easier. I still have to interact with people. I still even have to make phone calls. And it’s all still very challenging and exhausting.

Things that are simple for most people really aren’t simple for me at all.


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The Price of Performance

As I reflect on my life of performance described in earlier posts, I also have to consider the cost. And that’s actually a difficult knot to unravel. It’s true that I’ve poured an immense amount of energy and effort into crafting, shaping, and living that performance since my age was still measured in single digits. However, that’s been what I’ve considered ‘normal’ for decades, and at least some of it has been necessary, in the sense that failing to perform would have had more serious negative consequences.

And there were definitely benefits to performance, especially early in life. Even though I’m now 51, I still clearly remember incidents of bullying from my early childhood. They are fixed in my memory in large part because I could never understand them, even when looking back as an adult. As a specific example, one day at school in second grade, two of my three best friends held my arms while the third punched me in the stomach. It hurt physically, but it’s fixed in my mind because, to me, it came completely out of the blue. I was shocked and confused as much as hurt and later it was as if nothing had ever happened as far as everyone else was concerned. Most of the incidents I remember are like that one. They weren’t the stereotypical schoolyard bully. They were friends who suddenly attacked me and then often returned to being friends. I’ve thought about these incidents repeatedly over the course of my life and have never been able to understand them.

As an aside, my diagnosis is actually somewhat freeing in that regard. I still don’t know what specifically triggered those incidents, but I do finally understand why they happened. Because I am autistic I missed social signals and unintentionally transgressed boundaries provoking a negative response. There were likely clues before the actual incident erupted, but I never saw them. And that means I’ll never be able to understand that specific trigger. I was completely unaware of those clues at the time, I did not absorb any of the social indicators, and therefore those details simply aren’t in my memory. And that means I can finally let them rest. I know where and how they fit in the tapestry of my life.

Those sorts of incidents declined and largely vanished as I became a preteen and young teen. I remained vulnerable to deception, manipulation, and abuse throughout my life, most of which I blamed on myself and would usually try to hide or minimize, but I became less of a target for the sorts of bullying that marked my early childhood. I’ve always attributed the decline to everyone’s increased age and maturity, and that was probably a factor, but it’s obvious now that the sharp decline parallels my own focused efforts at learning how to modulate vocal tone and inflection, better emulate facial expressions, and integrate those into performative versions of myself. I trained myself to better blend into the social background. In fact, it’s so blindingly obvious to me now, I’m not sure how I failed to connect those dots before.

But the energy required for that ongoing, life-long performance had to come from somewhere. I joke, sometimes, about being the Energizer bunny, but I don’t have unlimited stores of energy however much I might like to pretend otherwise. I can drive myself to the point of collapse while maintaining a facade of normality, but I have definite limits.

One odd thing I’ve noticed is that my degree of introversion has appeared to increase over the course of my life. I’ve taken multiple scales in work and personal contexts over the years and as I’ve aged I’ve noticed the intensity of my introversion on those measures has increased. When I was in my 20s, for instance, I was almost evenly balanced between introversion and extroversion on the Meyers-Briggs scale in a test at work. Today, I practically max the scale toward introversion on that or any other test. And that makes sense if I’m pouring energy into performance with every social interaction. Over the years, that has become increasingly draining and I require more time to recuperate between performances. And since I know how draining it will be, social interactions become dreaded events I avoid as much as possible. At this point, I’m not even sure exactly how introverted I actually am and how much I just dread and seek to avoid donning my metaphorical costumes.

I’ve also struggled to maintain relationships. I interact with a lot of people my age and older and one thing really stands out to me. Most people have at least a few friendships that span large chunks of their life. Many still have close friends going back to childhood or college. And that’s true even of the people who say they don’t have many friends or don’t make friends easily. My wife and brother have friends going back to childhood. My father-in-law has friendships that have endured 60 years or more.

Me? I think I get along with people pretty well. At least most people don’t seem to dislike me. And I believe I have some friends, that is people with whom I’m more personal than a casual acquaintance. But most of my friendships have been purely situational. We were friends because our kids were involved in the same activity or school. Or friends at work. Once that context ends, the connection of friendship quickly fades. Even the few actual close friendships I’ve managed to form over my lifetime (which I could count on the fingers of one hand and have fingers left over) have never lasted more than 5-10 years at most. They don’t end abruptly or acrimoniously. They just diminish and fade, even when I’ve tried to pour effort into maintaining them.

I even struggle with familial relationships. I interact with those outside my immediate family very infrequently. And I struggle to maintain ties even with my brother and parents. My relationship with my older children is strained and I’ve been unable to repair it, even though it’s always on my mind. My wife and younger children are pretty much the only long-term, close relationships I have.

I recognize even from the handful of stories and accounts I’ve read so far that the process of building and maintaining relationships is a common autistic challenge. But I can’t help but wonder if the energy I’ve poured into performance has made it even more difficult in my case. If I pour as much energy as I do into casual social interaction in my effort to appear ‘typical’ perhaps it’s not surprising I have less energy to expend on relationships that actually matter to me. And I’ve stayed in character so thoroughly, I have to wonder how many friends have ever even known the real ‘me’ rather than a facade?

As I’ve struggled to deal with our ’empty nest’ I’ve noticed something else in conversations with my wife. She discusses things she would like to do and I tell her they sound like fun to me. I’m looking forward to doing some of them. And that’s true. But then a number of times she’s asked me what I would like to do. And I’ve responded, I think, with my ‘deer in the headlights’ look. She’s followed up with other questions. Isn’t there something I’ve always dreamed of doing? Don’t I have bucket list?

And my answer is … no? My focus has always been narrower. In general, I wanted to be a good father and husband and raise my kids — give them as stable and nurturing a life as I could. More specifically, though, my focus has been on what I needed to do today, this week, this month, and sometimes this year. It’s been all I could do to manage life as it came at me. It never even occurred to me that I was supposed to have dreams of things I would like to do ‘some day’. I think I may have done some of that sort of dreaming when I was a young teen, but it’s taken all my energy just to ‘do life’ and I realize that’s left little room for anything else.

Then there’s the issue of identity. Who am I, really? As I’ve recognized working through the ASD criteria as it applies to my own life, my lens has actually been distorted by my performance. I have not perceived myself accurately. How well do I even know myself? Where do the performative roles end and the ‘real’ Scott begin? I honestly don’t know.

There’s a part of me that wonders if maybe now that I know what’s causing them, I can shore up the holes in my performance. Perhaps I can become more ‘normal’ or at least appear that way. But there’s another part that’s just so tired. The thought of the work that would require is just exhausting. I cycle back and forth between relief and hopelessness.

A song from one of my favorite episodes of one of my favorite TV shows, keeps running through my head. It seems like a fitting note on which to conclude this post.


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Life As Performance Revisited

I’ve been continuing the lengthy process of understanding my life through the lens of an autistic human being. Many interactions and events that had never made sense to me now have a context that finally does. Many of those events were stuck in my memory because I could not explain them. For decades, they’ve posed a puzzle I could not answer. Finally, things are beginning to click. There are also things going back to childhood that did not necessarily stand out to me before, but which are now resurfacing and look very different through this new lens.

I mentioned some of those things in my previous two posts, but I realize there’s a lot more to it. I remember it was a combination of my tendency to ‘sing’ under my breath in a monotone and speak in a sing-song voice along with my high-pitched voice and accent that led my mother to have me sit with a tape recorder in the first place. It wasn’t just about my accent. I also remember it wasn’t just listening to my own voice. I would listen to a recording (by my mother or others) of a passage, a literary work, or just individual sequences of words and then I would record myself saying the same, compare the two, and keep practicing until I could match inflection, tone, and accent. I did that for months almost every day and continued to use it as an occasional tool well into adulthood. I still sometimes do it when practicing for some sort of significant performance.

In another instance, I read a post in which another autistic person mentioned practicing expressions in a mirror as a child. I did exactly the same thing! I would spend hours sometimes as a child practicing different expressions in a mirror until I thought they looked ‘natural’ and conveyed the right emotion. Acting classes helped a lot. In those classes they explicitly taught how to convey emotions and meaning to the audience through voice, expressions, and body language. Even after I stopped spending lengthy periods of time practicing expressions and body language, I would continue to spot check my expressions in mirrors as the opportunity presented itself. Heck, I still do that today.

I have never quite mastered the art of processing all the verbal and non-verbal cues in real time conversations. I approximate it well enough that I believe I usually ‘pass’ as typical, but I’m consciously processing everything that’s happening while also trying to look ‘natural’ and relaxed. As a result, I’m usually slightly off-kilter or a beat behind (at best) in live interaction. And if things get too ‘off-script’ I quickly get lost. I usually try to make sure most interaction is in group situations and when that happens, I can step back and start nodding and otherwise look engaged while not speaking while I try to catch up.

I dread one on one interaction with anyone with whom I’m not already comfortable. I quickly exhaust my scripts in those situations and they generally end awkwardly.

I also dread entering retail or other businesses and being approached or greeted by an employee. I consider it a success when I can get in and out without talking to anyone at all. My wife hates the self-service checkouts. I love them!

The phone has always made me extremely anxious. I hate making even normal calls such as making an appointment at the doctor’s office. I can’t even explain it, really. I will often stare at the phone, steeling myself, and rehearsing what I will say. Then I usually try to blurt it all out right away as quickly as I can. The worst is when I do that and the person says they’ll need to transfer me and I’ll have to do it all again. I’ve always pretended nonchalance or casually asked my wife if she could call where I could. But facing the phone in private has always been a nightmare. And again, I never understood why.

So I guess I really don’t ‘look autistic’ or at least autistic enough to register to most people. Instead, I’m just quirky and eccentric. But that ‘look’ has come from intentional, life-long practice and very deliberate effort.

Most of my life truly has been a performance.

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