What makes an interest “special”?

Posted: September 24th, 2016 | Author: | Filed under: Autism, Personal | Tags: , , , | 2 Comments »

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.

 


Mimicking Flexibility

Posted: September 18th, 2016 | Author: | Filed under: Autism, Personal | Tags: , , , | 2 Comments »

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.


Social Interactions, Misunderstanding, Stress, and Anxiety

Posted: September 16th, 2016 | Author: | Filed under: Autism, Personal | Tags: , , , | Comments Off on 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.


When “Simple Things” Aren’t Simple At All

Posted: September 15th, 2016 | Author: | Filed under: Autism, Personal | Tags: , , | Comments Off on 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.

 


The Price of Performance

Posted: September 12th, 2016 | Author: | Filed under: Autism, Personal | Tags: , , | Comments Off on 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.

 


Life As Performance Revisited

Posted: September 10th, 2016 | Author: | Filed under: Autism, Personal | Tags: , , , | Comments Off on 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.


Stereotyped and Repetitive?

Posted: August 27th, 2016 | Author: | Filed under: Autism, Personal | Tags: , , , | 6 Comments »

In order to meet the DSM V autism spectrum disorder diagnostic criteria you have to meet at least two of the items in section B. I’ve going to start with section B in my personal assessment because that was the most difficult for me to initially see in myself. I suppose after a lifetime of trying to normalize my behavior as much as possible, that’s not terribly surprising. The diagnostic language of the criteria also can make it difficult to translate into your lived experience. I actually went into my initial meeting to determine if an assessment would be helpful wondering if any of them really applied to me. The assessment process revealed how much they do fit and since the assessment I’ve become increasingly aware of the extent to which the criteria apply.

So, the first criteria is “stereotyped or repetitive motor movement, use of objects, or speech.” Reading that was an odd experience for me. As I mentioned in my general post about my assessment, I’m not lacking in verbal intelligence. I understand all of those words, both independently and in context. But the meaning that sentence intended to convey initially completely escaped me.

And at first, research didn’t help very much. When you have no idea what you’re actually trying to find, most of what you will initially find online about autism involves children and frequently involves children who appear to be at severity level 2 or 3 under the current criteria. And descriptions or videos of the behavior of a young child are not particularly helpful illustrations for a 51 year old adult.

For example, the most common motor movements described are hand flapping and rocking. I have no memory of ever hand flapping (once I watched videos of it) so either it’s not something I’ve ever done or it’s something I learned to suppress from a very young age. I do occasionally rock under stress or when thinking, but typically only when alone.

My first clue that there might be more involved came when filling out one of the screening forms prior to my assessment. The form was clearly designed to be filled out by parents of a young child, but one of the questions was about spinning. And that stopped me in my tracks. As a child, I would spin all the time. I would spin until I was dizzy. I would practice techniques I read about ballerinas and ice skaters using to spin longer without getting as dizzy. I loved spinning rides. As a young father, I would spin my children. I still spin in office chairs. I spin under the lights of the Zilker Christmas tree. I would spin when dancing. I don’t spin as much anymore, mostly because socially appropriate contexts have largely vanished, but I still like to spin. I’ve never thought anything about it. It was a moment when the world shifted for me and it truly registered that my perception of myself and typical behavior might be … out of phase with the perceptions of others and with reality.

I believe pacing was also mentioned. And again, as a child I remember my mother saying more than once I was going to wear a path in the floor of my room I paced so much. I know I need to walk or move to think things through even as an adult, but never thought much about it. Sometimes my wife has told me that I should sit down because I was making her nervous.

With that added information, I finally found autistic adult descriptions of ‘stimming‘ and I began to realize how extensively it unconsciously or semi-consciously permeates my life. Apparently, I stim all the time, and have for my entire life. I want to explicitly mention a post and a video on stimming by Amythest Schaber (video also embedded at the bottom of the post) that were among the first I found from an adult perspective, helped me realize what sorts of behaviors this criteria actually covered, and helped me start finding other adult autistic descriptions of ‘stimming‘. (The word remains a new one to me, so it will take some time before I’m really comfortable with it.)

And I’ve realized that although my diagnostician found ample evidence for this criteria during my assessment, that was really just the proverbial tip of the iceberg. Since then, I’ve been identifying them through both direct observation and by considering reactions by those close to me over the years. For instance, I vibrate or shake my legs apparently quite frequently. I’ve become more consciously aware that I’m doing it, but I also remember that my wife for years has told me to stop because I’m vibrating the sofa or the table. Or my feet are propped up and rustling newspapers and the sound is bothering her. I can stop with conscious effort, but I have a tendency to start again unconsciously.

I also will shake my arms down to my hands with them down at my sides. I’ve always just thought of it as releasing tension, but I realize that when I’ve done it around my wife, she’ll ask if I’m okay. I will also often curl and uncurl my fingers repetitively sequentially. I will tense and relax different parts of my body or curl and uncurl my toes in public settings, which are things that are mostly invisible to others. I can’t say I even ever consciously thought about it until I was diagnosed.

The criteria also mentions speech and again, I apparently use speech in a stereotyped and repetitive manner. I hum or sing segments of a song over and over and over again. I just joked about it being ‘stuck in my head’ if anyone ever commented, and I suppose that’s true in a way. But it’s something that’s been a constant all the way back to childhood. I remember one time when I was pretty young and we were on a road trip. I was in the front passenger seat and apparently kept humming or singing under my breath. I guess it was driving my mother crazy as she was driving because she kept telling me to stop. I would stop for a little bit when asked and then start again. We stopped at a gas station and my brother and I decided to switch seats. As we drove off, I apparently started singing under my breath again. My mother had reached her limit, reached over, and slapped my brother! She hadn’t noticed that we had switched seats.

I also speak to myself constantly. When I’m doing something, I will often verbalize what I’m doing at that moment. My wife and others will often ask what I said and I just say something like, “Oh, I was just talking to myself.” My family has gotten somewhat used to it, I guess. As with constantly singing or humming the same thing under my breath, I never recognized it as anything out of the ordinary. I realize now, though, that it’s probably my constant monologue in a child’s shrill, squeaky voice with a northern Louisiana twang that drove my mother to train me in American standard speech. I just knew that when I was nine years old, she sat me down with a tape recorder and had me speak, record, and play back how I said something versus a standard American accent version until I was trained out of the twang of my accent.

The criteria also explicitly mention echolalia in a parenthetical, a term I had never heard before. Again, the initial examples and videos I found were not very helpful and I thought it didn’t apply to me. As I delved more deeply, though, I realized that wasn’t true. For instance, frequently when my wife and I have been having a discussion, she has abruptly (from my perspective) said something along the lines of “that’s what I just said.” I’ve normally just awkwardly said I was agreeing or I was acknowledging what she said. It was awkward to me because I wasn’t consciously aware of apparently echoing her words. I think sometimes it’s an automatic way of ‘filling the silence’ when I’m having trouble finding words. Sometimes I am just signifying agreement. Other times, I’m not sure I can ascribe a reason. It’s apparently just something I do.

When I read about delayed echolalia, I realized that was also something I do pretty frequently. I often interject quotes from movies, TV shows, books, or other sources, generally without attribution. And I do so because it seems like the natural response to something that has happened, to express a thought, or just because it seems to fit. When I think about it, those quotes often prompt confusion from my family members, especially if they don’t recognize the source or context. Other times, one family member has explained the context of my quote to others who didn’t know it. I realize this has long been a significant ‘quirk’ of mine.

The list goes on. I also tend to make clicking or smacking noises at times. It drives my wife crazy and I try to self-monitor, but hardly a day goes by when she doesn’t point it out to me. Apparently ‘pressure phosphene’ or pressing on your closed eyes to generate visual effects is an autistic stim. That’s also something I’ve done at times my whole life. I would do jump rope, pogo stick, and other jumping activities by myself as a child for hours on end for the rhythmic motion.

It’s a challenge to look at myself and realize that for 51 years, my self-perception and self-understanding have been off the mark. I believe it will be helpful, at least in the long run, to have a more accurate self-image. But it’s also very difficult. It’s even been a struggle to write these posts. And that’s very unusual for me. Typically when I want to write, I start typing and the words just flow. I go back and edit and I’m done. But I mentally walked through bits and pieces that are in just this one post for days before I could even start writing. And once I started, it was a multiple day struggle to transpose my thoughts to words.

This process is really hard.

 

 


Life As Performance

Posted: August 22nd, 2016 | Author: | Filed under: Autism, Personal | Comments Off on Life As Performance

Picture of Stanislavski books on bookshelfI read an autisticmotherland post, Performing normal, the other day and it’s been percolating in my brain ever since. She opens the post with a statement that late diagnosed autistic adults “are method acting every day.” When I read that, I had to pause and look at the copies of Constantin Stanislavski’s books on the shelves behind me. I began studying acting as a child in the 1970s at the Alley Theatre in Houston. Many of the techniques I learned were based on his approach and various family members gave me copies of his works. While I have a large library today, Creating a RoleAn Actor Prepares, and An Actor’s Handbook are among the few books I preserved through my turbulent childhood and young adulthood.

While I considered acting as a career, I recognized even when I was young that though I loved performing, it was also incredibly draining for me. And the audition process was its own form of nightmare. So acting is something I’ve done off and on throughout my life for enjoyment or to present concepts or ideas, but not something I could ever imagine trying to do for a living.

I had never really considered, though, how much I rely on those techniques in day to day life. When I’m preparing for interviews, for presentations, a major meeting, or any other significant interaction, I never just consider what I’m going to say. I work through the image I want to convey. I consider the audience and how I want to engage them. In short, I’m always creating a role. I’m stepping onto each metaphorical stage in an appropriate character. I didn’t really think of it in those terms because the name of the role is always ‘Scott’, but it’s variations of a ‘Scott’ constructed to meet the demands of that role. So it’s actually, ‘Scott the technical guru’ or ‘Scott the middle school Sunday School teacher’ or ‘Scott the Cub Scout leader’ or any of the other host of public roles I’ve filled over the years.

Everyone, of course, does that to some extent, or at least I imagine they do, which is one reason I never really thought about it. My preparation, though, has often been less about the content and more about preparing myself to convey the correct persona in that context. And I realize that extends to purely social contexts as well. If we’re hosting something like a Sunday School Christmas party, I bring out and perhaps update the ‘Scott the host’ role. I even prepare a ‘Scott the patient’ role to try to make sure I interact appropriately at the doctor’s office. I try really hard to do well at ‘Scott the friend’ but given that the friendships I do develop tend to drift apart and fade over the course of years, I think I get a failing grade on that one.

In fact, personal relationships in general have always been a challenge. I think I’ve truly learned how to be a better father over the years. I always studied it. In fact, I notice one of the books I really liked on parenting is in the picture I took. And my two youngest children (24 and 19 years old) still seem to think highly of me as a parent. (My youngest insists I’m “the best Dad in the world” which I know isn’t true.) My relationship with my older children is, however, badly frayed, and I can’t seem to figure out how to fix it. It’s something that’s never far from my mind.

Living with me has also been very difficult for my wife. While she is also something of an introvert, she’s very social and often feels isolated and alone. As much as I try, I know I fall short meeting those needs. It’s been incredibly frustrating for me and painful for her when she has needed to discuss something highly emotional and I’ve found myself effectively mute. I experience that sometimes in other contexts, but in social settings, I can usually just withdraw and listen. That’s not the case when involved in an intense conversation with my wife. When I lose my words with her, it’s impossible to disguise. She’s always taken it as a refusal to speak on my part and I’ve never been able to explain my own interior experience. I want desperately to be able to say something, but the words fly from my grasp as soon as I reach for them. Curiously, that’s never happened to me when formally presenting in a public or group context, even when spontaneous questions are involved.

It’s my hope that knowing what lies of the root of those issues will help moving forward. Perhaps I’ll be able to find alternative approaches. Simply knowing why helps, at least a little.

Still, I’ve spent a lifetime shifting from one role to another. I never stop performing. I’m always on stage in character. Even without recognizing that fact about myself, I’ve always empathized deeply with the famous Shakespearean quote from As You Like It.

All the world’s a stage,
And all the men and women merely players;
They have their exits and their entrances;
And one man in his time plays many parts,

I’m also most comfortable in my professional role, as the author of the Performing normal post mentions about herself, though after three decades, it’s beginning to wear thin as well. The more personal a connection becomes, the less successful my performance of the associated role has been. Ultimately, that’s really the reason I sought diagnosis. I don’t actually care much about work beyond the enjoyment derived from its intellectual challenges and, of course, the paycheck. Casual social interaction, however well I perform, also means little to me. It’s the close, personal connections that actually matter to me. And I’ve been failing at them to one degree or another my whole life.

I want to start succeeding instead.


Learning & Struggling

Posted: August 1st, 2016 | Author: | Filed under: Autism, Personal | Comments Off on Learning & Struggling

I’m still learning what my diagnosis means and struggling to shift my perspective and understanding of myself using this new lens. After a half century of life, that’s not an easy task. I don’t mean to imply it’s not worth the effort. Events going all the way back to early childhood which stuck in my mind because they never made sense, however often I reviewed the memory, finally have an explanation. But changing the lens through which you’ve framed your self-understanding and that of the world around you is … challenging.

I’ve also been somewhat swamped with life. One of those things may not seem like much to most people, but it’s been a major issue for me. I had to pack up my books, redo my computer setup, and clean out my office closet when we replaced the carpet with tile throughout the house. So I’ve been having to unpack and organize my books, comics, and computer equipment. And while that may sound relatively minor to most people, it’s hasn’t been to me.

It’s important that everything is organized in a way that may seem somewhat random but makes sense to me. (I was explaining those factors to my youngest daughter yesterday. She laughed, but appreciated them.)

It’s also very comforting to me to be surrounded by my books where I can see and touch them. I can feel them around me even when I’m not looking at them. I’m sure it sounds strange, but that’s the best I can describe it. So much of my non-work energy lately has been focused on unpacking and organizing. I’m finally almost done.

I’ve also been trying to figure out who to tell that I’m autistic and how to tell them. That’s also a struggle.

I do have many thoughts I want to cover in future posts. My mind is constantly constructing things to say. But I mostly haven’t had the energy to face the blank white screen. I’m sure that will improve over time.

I am here, however, even if I haven’t been writing much since my initial flurry of post-diagnosis posts.


DSM V Diagnostic Criteria for Autism Spectrum Disorder

Posted: June 22nd, 2016 | Author: | Filed under: Autism | Tags: , , , | Comments Off on DSM V Diagnostic Criteria for Autism Spectrum Disorder

Below are the diagnostic criteria for Autism Spectrum Disorder from the DSM V. I wanted to have my own post to which I could refer in future posts. As I work through what each of the criteria means, I’m discovering more examples from my life. Basically, in order to be diagnosed, you have to meet all three criteria in section A and at least two of the criteria in section B. In addition, the symptoms must be present from early childhood and must limit or impair everyday functioning.

As someone who was diagnosed at 51, I had developed a host of masking strategies. It wasn’t as challenging as you might imagine to think back to childhood. Many of the examples for the criteria were things that were fixed in my memory because I had no explanation for them or through the intensity of my interest. My masking strategies for section B have also been more effective than my strategies for section A, so section B took more work to uncover.

One of the challenges as I’ve been working through the criteria to try to understand them and apply them to my life is that much of what you find online are examples from young children. And while some of those help me recall things from early childhood, they offer little explanation for how the criteria might look in an adult. The most helpful resources I have found for that have been posts and videos by other adult autistics.

If you’re reading this and you’re autistic, you already know what the criteria are. If you’re not, you may not be interested in that level of detail. I will be working through some of the specifics as they apply to me in future posts, though, so this post will provide a reference point for those discussions.

DSM-5 Diagnostic Criteria for ASD, 2013

Autism Spectrum Disorder
Must meet criteria A, B, C, and D:

A. Persistent deficits in social communication and social interaction across multiple contexts, as manifested by the following, currently or by history (examples are illustrative, not exhaustive):

  1. Deficits in social-emotional reciprocity, ranging, for example, from abnormal social approach and failure of normal back-and-forth conversation; to reduced sharing of interests, emotions, or affect; to failure to initiate or respond to social interactions.
  2. Deficits in nonverbal communicative behaviors used for social interaction, ranging, for example, from poorly integrated verbal and nonverbal communication; to abnormalities in eye contact and body language or deficits in understanding and use of gestures, to total lack of facial expressions or nonverbal communication.
  3. Deficits in developing, maintaining, and understanding relationships, ranging, for example, from difficulties adjusting behavior to suit various social contexts; to difficulties in sharing imaginative play or in making friends; to an absence of interest in peers.

Specify current severity:

Severity is based on social communication impairments and restricted, repetitive patterns of behavior (see Table 2).

B. Restricted, repetitive patterns of behavior, interests, or activities as manifested by at least two of the following, currently or by history (examples are illustrative, not exhaustive):

  1. Stereotyped or repetitive motor movements, use of objects, or speech (e.g. simple motor stereotypes, lining up toys or flipping objects, echolalia, idiosyncratic phrases).
  2. Insistence on sameness, excessive adherence to routines, or ritualized patterns of verbal or nonverbal behavior (e.g., extreme distress at small changes, difficulties with transitions, rigid thinking patterns, greeting rituals, need to take same route or eat food every day).
  3. Highly restricted, fixated interests that are abnormal in intensity or focus (e.g. strong attachment to or preoccupation with unusual objects, excessively circumscribed or perseverative interests).
  4. Hyper-or hyporeactivity to sensory input or unusual interest in sensory aspects of the environment (e.g. apparent indifference to pain/temperature, adverse response to specific sounds or textures, excessive smelling or touching of objects, visual fascination with lights or movement).

Specify current severity:

Severity is based on social communication impairments and restricted, repetitive patterns of behavior (see Table 2).

C. Symptoms must be present in the early developmental period (but may not become fully manifest until social demands exceed limited capacities, or may be masked by learned strategies in later life).

D. Symptoms together limit and impair everyday functioning.

E. These disturbances are not better explained by intellectual disability (intellectual developmental disorder) or global developmental delay. Intellectual disability and autism spectrum disorder frequently co-occur; to make comorbid diagnoses of autism spectrum disorder and intellectual disability, social communication should be below that expected for general developmental level.

Note: Individuals with a well-established DSM-IV diagnosis of autistic disorder, Asperger’s disorder, or pervasive developmental disorder not otherwise specified should be given the diagnosis of autism spectrum disorder. Individuals who have marked deficits in social communication, but whose symptoms do not otherwise meet criteria for autism spectrum disorder, should be evaluated for social (pragmatic) communication disorder.

Specify if:
With or without accompanying intellectual impairment
With or without accompanying language impairment
Associated with a known medical or genetic condition or environmental factor (Coding note: Use additional code to identify the associated medical or genetic condition.)
Associated with another neurodevelopmental, mental, or behavioral disorder (Coding note: Use additional code[s] to identify the associated neurodevelopmental, mental, or behavioral disorder[s].)
With catatonia (refer to the criteria for catatonia associated with another mental disorder, pp. 119-120, for definition) (Coding note: Use additional code 293.89 [F06.1] catatonia associated with autism spectrum disorder to indicate the presence of the comorbid catatonia.)

Table 2: Severity levels for autism spectrum disorder

Severity level Social communication Restricted, repetitive behaviors
Level 3“Requiring very substantial support”
Severe deficits in verbal and nonverbal social communication skills cause severe impairments in functioning, very limited initiation of social interactions, and minimal response to social overtures from others. For example, a person with few words of intelligible speech who rarely initiates interaction and, when he or she does, makes unusual approaches to meet needs only and responds to only very direct social approaches Inflexibility of behavior, extreme difficulty coping with change, or other restricted/repetitive behaviors markedly interfere with functioning in all spheres. Great distress/difficulty changing focus or action.
Level 2“Requiring substantial support” Marked deficits in verbal and nonverbal social communication skills; social impairments apparent even with supports in place; limited initiation of social interactions; and reduced or  abnormal responses to social overtures from others. For example, a person who speaks simple sentences, whose interaction is limited  to narrow special interests, and how has markedly odd nonverbal communication. Inflexibility of behavior, difficulty coping with change, or other restricted/repetitive behaviors appear frequently enough to be obvious to the casual observer and interfere with functioning in  a variety of contexts. Distress and/or difficulty changing focus or action.
Level 1“Requiring support” Without supports in place, deficits in social communication cause noticeable impairments. Difficulty initiating social interactions, and clear examples of atypical or unsuccessful response to social overtures of others. May appear to have decreased interest in social interactions. For example, a person who is able to speak in full sentences and engages in communication but whose to- and-fro conversation with others fails, and whose attempts to make friends are odd and typically unsuccessful. Inflexibility of behavior causes significant interference with functioning in one or more contexts. Difficulty switching between activities. Problems of organization and planning hamper independence.