Life As Performance Revisited

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

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

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

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

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

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

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

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

Most of my life truly has been a performance.

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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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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.

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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.

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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.

 

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Alexithymia or Emotions Are Really Complicated

As I was reading and digesting information on autism, I stumbled across this blog post on Alexithymia by Cynthia Kim from several years ago. Alexithymia describes the condition in which a person has difficulty identifying and describing emotions. I had a profound reaction to her post. As I tweeted at the time, it never even occurred to me that there might be a name for it.

I hate the simple question, “How do you feel?” I have emotions. Lots of them. Much of the time they stay more or less orderly under the surface. Sometimes they erupt. But if I’m asked to identify and name them? I’m usually stumped. It’s different than the times I lose my words because in these situations I have no problem speaking. I simply have no idea what to say. And I don’t know what to say because I don’t know how I feel. Unfortunately, “I don’t know” isn’t usually considered an acceptable response. So my wife ends up complaining that I’m always “fine” because that’s often one of my stock answers to questions about how I’m feeling.

I also struggle to identify emotions in others. It’s like solving a mystery. For instance, I might notice that my wife seems to be upset, but when I ask she says she’s fine. I’ve learned over the years that I shouldn’t necessarily let it drop there. (And I did have to learn that, since when I answer that way I’m trying to discourage further questioning.) I usually start by trying to figure out if she’s upset at me. So I mentally run through everything I’ve said and done to see if I can identify a way I might have upset her. I also mentally run through what she’s told me about her day to see if something else might have upset her. I’ll try to probe with some (probably awkward) questions. In all honesty, I rarely solve the mystery. Usually, at some point she’ll tell me. When she doesn’t, I’ll often try to figure it out for several days before finally giving up.

Even when I can’t clearly identify them, I’ll also often take on the emotions of others around me. It’s difficult to describe how it feels to realize you’re angry for no reason except another person is angry. Or to have that fact pointed out to you by the other person.

In another post, Cynthia Kim discusses and takes an online Alexithymia test. Unsurprisingly, my results indicated high alexithymic traits. It’s not a diagnostic test, of course and has other caveats. Still, as I find a counselor experienced working with autistic adults, it’s definitely on the list of things I want to discuss.

Test Results: 119 Points

Alexithymia: You show high alexithymic traits. If you are interested in Alexithymia we would be happy to have you as a regular visitor on our pages.

Detailed Results

Your result is broken down into various factors to give you some insight into your result.

Category: Difficulty Identifying Feelings: 22 Points <15 – 18>
In this category you show high alexithymic traits.

Category: Difficulty Describing Feelings: 18 Points <10 – 12>
In this category you show high alexithymic traits.

Category: Vicarious Interpretation of Feelings: 9 Points <8 – 9>
In this category you show some alexithymic traits.

Category: Externally-Oriented Thinking: 22 Points <18 – 21>
In this category you show high alexithymic traits.

Category: Restricted Imaginative Processes: 12 Points <18 – 21>
In this category you show no alexithymic traits.

Category: Problematic Interpersonal Relationships: 24 Points <15 – 18>
In this category you show high alexithymic traits.

Category: Sexual Difficulties and Disinterest: 12 Points <10 – 12>
In this category you show some alexithymic traits.

 

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I Use My Words (Except When I Can’t)

I can’t remember ever not being able to read. After 1st grade our neighbor, a retired teacher with a master’s degree in reading education, noticed me reading to groups of older neighborhood kids and tested my reading level. I was apparently reading on a 12th grade level. I performed a scene from King Lear (all parts) at a talent show when I was in the 4th grade. I took acting classes at the Alley Theatre in Houston from 6th-8th grade and acted in a number of things over that period as well as competing in speaking and drama competitions.

I have words, more words than most people, and I use my words.

Except, frustratingly, sometimes I lose my words.

It’s something I’ve never really spoken about before, probably because it has always intensely bothered me. My words have always been a core part of my identity. I am expressive and articulate. I never understood how or why I would sometimes find myself effectively mute.

It’s difficult to describe to someone who has never experienced it, but there are times, typically when I am stressed or overloaded, when I will suddenly have no words to speak. Someone will ask me a question, I will start to respond, and … nothing. The harder I try to find words, the more they escape me. I can almost taste the words in my mouth. I know I should be able to respond. I ought to have something to say. But my mind is unable to make that connection. If I’m able to force something out, I can hear my own halting speech, and I don’t recognize it. It’s the voice of a stranger.  I know the words are wrong.

It’s an unpleasant experience made much worse when you have no idea why it keeps happening to you.

After I was diagnosed, I found blogs and videos from other autistic people. When a number of them described a similar experience, I felt relief. No, it doesn’t mean I won’t lose my words anymore. But now, at least, I’ll understand why. It won’t be something I have to struggle to hide. It won’t torment me to the extent it has in the past.

And I’ll know I’m not alone.

That matters more than I can express.

I use my words, at least when I have them.

And that’s okay.

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My Autism Diagnosis

In future posts, I plan to delve into the details of the DSM V Autism Spectrum criteria and relate them to my own life and experience. But I wanted to start with more of an overview of some of the things that are specific to my diagnosis.

First, I apparently do not have any of the disorders that are so often comorbid with autism. My diagnostician emphasized that was highly unusual. In fact, attention issues are so common among autistic individuals that it was once simply assumed. But I tested fine in the tests for attention deficit issues. Similarly, I do not suffer from anxiety disorder, also an extremely common comorbid diagnosis. That doesn’t mean that I don’t have situations and circumstances that make me anxious and which are related to autism. For instance, the prospect of making even a routine phone call tends to require significant preparation and effort on my part. Driving has also never been as easy for me as it seems to be for most people. Fortunately, my wife prefers to drive anyway. However, my coping mechanisms mostly seem to work and my anxiety stays at manageable levels. I seem to be more or less “purely” autistic, whatever that means in practice.

It’s also very common for autistic people to have a significant split in their core intelligence (perceptual reasoning and verbal intelligence). According to my diagnostician, the split can go either way, but it’s often a feature of the autistic brain. Much of the time, that split is expressed as one portion of core intelligence being average or above average while the other portion is low average or below average. In my case, however, perceptual reasoning is high while verbal intelligence is, well, considerably higher. It’s roughly a 30 point gap. However, that apparently means my IQ should not be reported as a single number. Erroneous attempts to do so across varying tests are probably what led to wildly different reported IQ scores throughout the first part of my life.

Still, I find it a little amusing that (technically) I don’t have an IQ. 🙂

The testing did reveal that I have a very difficult time processing and remembering verbal information on a single presentation. My results were almost as low as the test could go. On repeated verbal presentation, my retention quickly moved up to the average or high average range. And my visual memory was close to the ceiling of that test. It’s the sort of problem that could easily be misdiagnosed as an attention issue if my diagnostician didn’t explicitly test for verbal and visual attention problems. But since those were fine, this is simply one of the ways autism is expressed in my brain.

If I’m verbally told something once, I’m pretty unlikely to process and retain it. Of course, I was aware of that fact in at least some contexts. During lectures, for example, I would always take notes even though I often never looked at them again. I thought I was just a visual learner and needed to see the information in writing, but the process of transcribing what you hear apparently transfers it over to a different part of your brain. It can make effective verbal exchange of information more challenging for me.

Those were a few of the somewhat unusual items in my diagnosis. At least, they stood out to me. Autism is such a large and encompassing diagnosis that it’s not easy to wrap your head around it at once. I began there and then started researching and thinking more deeply. I’ll continue trying to peel the layers off the onion in future posts.

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Autistic Pride Day

Autistic Pride DayApparently June is Autism Acceptance Month and June 18 is Autistic Pride Day. To be honest, I’ve barely started processing my reaction to my diagnosis. I’m not sure how to react to a Pride Day. As an older, white, mostly cishet male I’ve never had one before. Or, as the joke goes, every day is a white male pride day.

I’m certainly not ashamed of my diagnosis. It’s simply a central facet of who I am. My brain apparently really does function differently than the more typical human brain. I’m also pretty well established in life and have a lot of privilege from my other descriptive categories. But I do want to get to better know and understand myself and my fellow autistics. I expect that to be an ongoing process. And I want to offer back what I can, though I hardly know what that might at the moment.

While I can’t claim to have processed my own reaction, I did want to post something today once I realized what it was. It is, after all, my first Pride Day since being diagnosed.

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Autistic

Autism Spectrum Disorder Level 1.

It’s hard to describe what it’s like to hear those words from a diagnostician’s lips. Even when you’ve spent most of your 51 years of life trying to figure out why your brain seems to work differently from everyone else’s, it’s still a shock to hear that it’s because your brain actually is different. And that’s true even when you’re somewhat prepared. I had spent the weeks leading up to and after the testing bouncing from trying to decide how I would react when I was told I was autistic to how I would react when I was told I wasn’t. I couldn’t even figure out which would be the more positive outcome. It’s a pretty serious and significant diagnosis. Even at level 1, the challenges associated with it are not insignificant.

Ultimately, though, I have always known that I experience the world and interact with it differently from most people. The diagnosis finally offers context and an explanation for so many experiences and struggles throughout my life. And with that knowledge, I’m at least hopeful I can better use my energy to work constructively in areas and on relationships that really matter to me instead of floundering in all directions.

The resources available for autistic adults are limited, but I live in a major urban area so at least there are professionals who do work with autistic adults. Unlike many, I have options. I also have a well-paying job with good health insurance, something I gather many in my position lack. And I can well understand why. I’ve been fortunate in a great many ways.

Anyway, for anyone who still checks my blog, I just want to say hi!

::wave::

I have quite a few things bouncing around my head that I need to express, so I’m sure I’ll be writing more frequently. Most of those posts, however, are likely to be autism related. You’ve been warned.

Thoughtful comments always welcome, as usual.

Grace and peace.

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