Stereotyped and Repetitive?

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

I 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 Role, An 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.

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

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.