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.

 

 


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.

 


Alexithymia or Emotions Are Really Complicated

Posted: June 21st, 2016 | Author: | Filed under: Autism, Personal | Tags: , , | Comments Off on 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.

 


I Use My Words (Except When I Can’t)

Posted: June 20th, 2016 | Author: | Filed under: Autism, Personal | Tags: , | 2 Comments »

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.


Autistic Pride Day

Posted: June 18th, 2016 | Author: | Filed under: Autism | Tags: , , | Comments Off on 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.


Autistic

Posted: June 17th, 2016 | Author: | Filed under: Autism, Personal | Tags: , , | Comments Off on 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.