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.