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.

 

 

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5 Comments

  1. This field was intentionally left blank
    Posted September 11, 2016 at 11:45 pm | Permalink

    Oh. My. Goodness. I could have written this post! (Except that you did it better lol)

    My experience was the exact same as yours. I was initially baffled by the repetitive movements/speech part of the diagnostic criteria, too, because I, too, never flapped my hands or repeated words. Instead, I would spin for hours, too. And my partner and I quote movie lines to describe a situation, too (we call it “referencing movies” or we’ll call these quotes “movie references”) lol. And I’ve also always talked to myself (to the point where my mom would holler down the hall to go to sleep lol), and because of this, my room wasn’t the one next to theirs; mine was down at the other end of the hall. Songs stuck in my head? Yep, I’ll start belting out parts of them, too. Not the whole song, just segments. This happens particularly when I’m fatigued; in fact, it’s one of the only ways I can tell I’m fatigued (“fried”) lol. I’m a 39-year old female (non-binary)

    Great post!! (Applause) ❤️

    • Posted September 12, 2016 at 11:22 am | Permalink

      Thanks! I tend to work through things by writing about them. I have done that my whole life. I sometimes joke that I don’t know what I think about something until I’ve written about it. Even when I work through something entirely in my head, I do so by going through the process of composing a mental ‘written’ work. I guess that makes sense now that I know that the fairly common autistic trait of widely divergent core ‘intelligences’ (for lack of a better term) comes down so heavily on the verbal intelligence side for me.

      I’m slowly working through the other criteria too, though I keep getting sidetracked by thoughts on the performance metaphor. 😉 It’s really some of the hardest writing I’ve ever done. I thought I had a relatively solid self-understanding and I’m discovering that’s not necessarily true. It’s a challenge to look at your life through a different lens, even if it’s a more accurate, corrective lens.

      I’m 51, which is also something of a strange age. Later this year, my youngest daughter leaves her teen years behind about the same time my granddaughter officially enters them. That’s hard to wrap my head around.

      Thanks again. I’ve never had a lot of traffic on my blog nor am I one of those bloggers who even wants a lot of traffic. The only reason I started publishing some of the things I write instead of keeping them all to myself or a small group is because I thought there might be some people out there who would find some portion of it helpful or interesting. I’m always happy when someone finds common ground with something I’ve shared.

  2. This field was intentionally left blank
    Posted September 11, 2016 at 11:46 pm | Permalink

    Omg! And I’m also a Celiac person

    • Posted September 12, 2016 at 11:01 am | Permalink

      Since I was diagnosed with celiac disease seven years ago (right before my 44th birthday), I’ve had a lot more time to adapt to it. Like autism, there’s also a strong genetic component with celiac. My two younger children were both diagnosed after I was. Fortunately, we paid attention so we knew to have them screened for it. So they didn’t have to suffer as long or as severely as I did before I was finally diagnosed. They had comparatively little damage and very mild symptoms at most. They healed completely in almost no time on a gluten free diet.

      I haven’t checked yet, but I have wondered if the incidence of celiac disease might be higher among autistic people than the general population. (Though studies have shown it’s actually pretty common in the general population, just largely undiagnosed.) If so, that might explain some of the anecdotal reports of parents who reported a reduction in ‘autistic symptoms’ in their child when they tried a gluten free diet. I’m sure removing the source of autoimmune distress would help in all sorts of ways. I know I was in severe distress more than just physically before I was finally diagnosed.

      • This field was intentionally left blank
        Posted November 2, 2016 at 12:07 am | Permalink

        “I have wondered if the incidence of celiac disease might be higher among autistic people than the general population.”

        I’ve wondered this, too! “They say” that Asperger’s/autism “only” happens in about 1-2% of the population; the same holds true for Celiac Disease. The odds of people like you and me having both wouldn’t be zero, but they’d be very small. I mean, does lightning strike twice? And I think there are a lot of us out there, largely undiagnosed. I wasn’t diagnosed with Celiac Disease until almost 7 years ago (on 5 Nov) at age 32, and I’ll likely be getting a formal Asperger’s/autism diagnosis on Friday (4 Nov lol) at age 39. Which means, of course, that 7 years ago and prior, I was completely unaware that I have both/either. Lived over 30 years, oblivious. Wonder how many others out there are like that? 🙂

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