Who Am I?

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.


My Autism Diagnosis

Posted: June 19th, 2016 | Author: | Filed under: Autism, Personal | Comments Off on 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.


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.