Saturday, May 8, 2010

Lady Rye's Incomplete and Totally Subjective Guide to Aspergians

May 8, 2010

If you met one Aspergian, you have met one Aspergian. We are as different from one another as neurotypical people are from one another. We have been around, always, without a name or label. We are a genetic variant of the human brain. We have some similarities in behavior, but so do Neurotypicals.

We are "on the spectrum". The spectrum includes similar brain structure "disorders": Autism, HFA (High Functioning Autism), PDD-NOS (Pervasive Developmental Disorder Not Otherwise Specified - as autism) and Asperger's. There is debate about whether or not Asperger's actually should be included on the spectrum. There is also debate about whether HFA and Asperger's are the same disorder.

Traits seen in Aspergians

Social Understanding
Tony Attwood jokes that he has discovered a simple procedure that will remove almost all the symptoms of a person with Asperger's: put them in a room by themselves. This is funny because, Asperger's is a social impairment.

Social interactions are often exhausting for those of us with Asperger's Disorder. We usually are pretty good conversing one-on-one with another person, but add a third person (or more) and we are quickly overwhelmed. We react in either appearing bored by the conversation or by overwhelming the conversation with our own, refusing to allow others to interrupt our diatribe.

Teasing and Bullying
A person with Asperger's has a higher than expected chance of being the target of a bully, or group of peers. We are more prone to low self-esteem, anxiety and depression. We have a hard time understanding why we were the target of bullying and wonder what we could have done to prevent it. Adults with undiagnosed Asperger's tend to repeatedly replay traumatizing events in our minds in an attempt to understand why they were singled out. It is hard to move on - or have closure - when you don't understand why.

Theory of Mind
The term Theory of Mind (ToM) means the ability to recognize and understand the thoughts, beliefs, desires and intentions of other people in order to make sense of their behavior and predict what they are going to do next. ToM is a synonym of Empathy. People with Asperger's Disorder have immature or impaired ToM abilities, but they do not have an impaired sense of EMPATHY. Aspergians care deeply about other people but have difficulty recognizing subtle signals of the emotional states of others.

The Effects of Impaired ToM on Daily life
How do you know what someone is thinking or feeling? One way is to read a face, especially around a person's eyes. People with Asperger's Disorder often have trouble with or avoid eye contact. As adults we know we are supposed to "look people in the eye" when we talk to them - but we get this wrong. Neurotypical people spend more time looking away when speaking and focus in on people's eyes when that person is talking. Aspergians tend to do the opposite - or stare at the eyeballs - instead of the area around the eyes. I have lots of trouble with eye contact. I appear quite normal to my listener I am sure, I look them in the eye when I speak, but then I stare at their mouths when they speak back to me, or I stare off into space when speaking and listening. Both of these behaviors are seemingly normal, but I am missing a lot of social cues. I have made two co-workers cry at two different meetings at school because I wasn't looking at them during a discussion. I also have made countless students cry while critiquing their work. Insensitive? You could say that, but I actually was mystified by each occurrence.

Some people with Asperger's have difficulty with literal interpretation of other people's words. Even though I didn't think I shared this stereotypical Asperger's trait, I have a great example. At the beginning of the school year, during staff development, a new teacher was brought in to our school to start the PBIS (Positive Behavioral Instructional Strategies - the new pet anagram).  Over the summer, she and a group of teachers had come up with a short list of positive statements for the students. We teachers were supposed to post these posters all over our rooms and hallways. They took our school mascot - a Tiger - and made up the catchphrase "Tiger Pride" There was one positive statement that went with each letter of Pride. One of my special interests is cats. I perked up out of my boredom and announced to my table of teachers, "Tigers don't run in groups - they are solitary animals. Lions live in Prides." I kept going on and on about it. Teachers were shushing me, but the teachers closest to me were bemused, but did not attempt to quiet my ranting. I never let it go. I made signs for the first day of school, replacing "Tiger Pride" with "Tiger Streak" and "Tiger Ambush", making similar positive statements with each letter. I made handouts for my class. When the principal stopped by to say hello, I proudly handed her one of my handouts. The next day I was called into her office. She was very upset that I misunderstood the message behind PBIS. I told her she was wrong about that - I understood, but I wasn't going to misinform my students about great cats and their social groupings. Tigers are solitary creatures. The teacher group should have not tried to make a "cute" play on words using the wrong animal grouping...She ordered me to apologize to the PBIS coordinator. In my apology, I told her she was wrong about Tiger Pride...
The Tiger Streak Poster on my classroom door...

People with Asperger's Disorder sometimes miss subtle clues that other people are becoming annoyed with them. Neurotypical people often misinterpret this behavior as a deliberate attempt to be disrespectful or rude.

Due to differences in acquisition nature of ToM abilities in people with Asperger's Disorder, sometimes they can develop a different form of self-consciousness. As we reflect upon our own mental state and the states of others by relying on our intellectual rather than our undeveloped intuitive abilities we become quite reflective. This explicit self-consciousness is similar to that of philosophers. (Frith and Happe 1999)

Being unsure of what others are thinking or feeling can contribute to a general feeling of free floating anxiety. Relying on intellect to process social interactions (such as intellectualizing what is going on if someone is steps away from you while talking to you. Is it because you are standing too close, or maybe they are worried about something else? Then testing and retesting your theories while trying to maintain a normal conversation, etc...) contributes to social exhaustion. People with Asperger's Disorder require a significant amount of cognitive processing to make up for their limited ToM skills. This leads to feeling "peopled out" - over socialized - and the need to pull back and do something solitary in order to regroup one's energy.

Understanding and Expression of Emotions
There is a psychological term to describe another characteristic associated with Asperger's Disorder - Alexithymia - that is the impairment of the ability to identify and describe feeling states. Children and adults with Asperger's Disorder often have a limited vocabulary of words to describe feeling states, especially subtle or complex emotions. We can swing from one emotion to another quite rapidly, without transition periods. I can move quickly from being "calm" to being "irate" to being "manic" in a matter of minutes.

Routines and Special Interests
Routines are characteristics of adults with Asperger's Disorder. Routines can be seen as a coping mechanism that develops in us as we use our intellect to replace what we miss intuitively in our interactions. Routines impose an order and predictability to our life. Surprises are not easily tolerated by those of us with Asperger's Disorder.

Our special interests are ways that we can enjoy ourselves intellectually and the interest itself can make it easier to maintain relationships that revolve around our special area of interest. Special interests fall under a couple categories: Collecting, and acquisition of knowledge or expertise. Collecting is a tendency of children on the autistic spectrum. Adults with Asperger's can accumulate a huge assortment of objects related to an area of interest. Comfort is found in cataloging the collection. If the collection is displayed, an Aspie can create a specific ordering system, and if someone accidentally moves something out of place, they can become quite agitated until order is restored.

Collecting facts about a specific topic or concept  until the person with Asperger's becomes an expert in the area is another way to enjoy a special interest. Often, special interests start when the Aspie is a child, and mature and grow as the intellectual capacity of the child increases. Over time, there can be a progression to multiple interests spanning many different subject areas.

The function of special interests is to overcome anxiety - by being interested in things that cause fear,  a source of pleasure - when the special interest is related to a happy memory, a means to relax - repetitive behaviors can help reduce the feeling of stress and relax, and to occupy time - how else does one spend their time if it is not spent socializing?

Hans Asperger described an unusual profile of language abilities that included problems with conversation skills, the melody - or flow of speech. There are a couple language peculiarities surrounding speech in the diagnostic criteria for Asperger's Disorder.

Gilberg and Gilberg (1989) requires three of the following for a diagnosis:
  • delayed speech development
  • Superficially perfect expressive language
  • formal pedantic language
  • odd prosody, peculiar voice characteristics
  • impairment of comprehension including misinterpretations and implied meanings.
Szatmari (1989) recognized these odd speech characteristics and require at least two of the following for diagnosis:
  • abnormalities in inflection
  • talking too much
  • talking too little
  • lack of cohesion to conversation
  • idiosyncratic use of words
  • repetitive patterns of speech.
The DSM-IV briefly refers to language development in their diagnostic criteria, but only to establish that there should be no major delay in language acquisition in Asperger's Disorder.

Aspergians show some subtle abnormalities in speech that include verbosity and abrupt transitions in subjects and oddities in loudness, pitch, intonation, prosody, and rhythm - do you remember my voice before my vocal chord was paralyzed?  I had an unusual Minnesotan accent that bordered upon an Irish brogue...

Even in the clip above, I don't talk as quickly as I did when I was in high school, where I was frequently on the receiving end of some lame joke. Now-a-days, I do not have the exaggerated Minnesota accent - it is much too difficult for me to speak using all those elongated vowel sounds. I still overpower people by volume in conversation if I can - like at a dinner table - but if I am at a loud place, like a restaurant, so I generally tune out of the conversation. This occasionally causes people to think I am annoyed or bored. That isn't the case, usually I am listening and and you should beware, because I am laying in wait for my chance to dominate the conversation the first chance I get!

Cognitive Abilities
Some young children with Asperger's start school with academic abilities above their grade level. They appear at times to easily "crack the code" of reading, spelling or numeracy. In an earlier post I made mention of how I taught myself to read under the Christmas Tree - I "cracked the code" with no help (other than knowing letter sounds). I spell and read well but I am confused by numbers. Standardized testing of IQ shows that individuals with Asperger's Disorder are at or above the normal range.

Recent studies of teens and Adults with Asperger's Disorder show an impaired executive function. This term psychological term "Executive Function" includes:
  • organizational and planning abilities
  • working memory
  • inhibition and impulse control
  • self-reflection and self-monitoring
  • time management and prioritizing
  • understanding complex or abstract concepts
  • using new strategies
This impairment in executive function is apparent in social situations that are stressful. By the age of eight, a neurotypical child is able to use their frontal lobe to inhibit a response and think before deciding what to do or say. In a non-stressful situation, even an Aspie can do that, but throw a little stress into the situation, we can become overwhelmed or confused - then we can react impulsively.

Another thing that is observed in people with Asperger's Disorder is that some can be very good at noticing detail, but appear to have difficulty seeing the whole picture. I talked about this in an earlier blog - how I see the details, and the whole, but not the parts that make the whole. This isn't all bad though. This ability to notice details and notice new connections that are not seen by people who perceive the world through a more conventional viewpoint can be a valued skill set, depending upon your chosen career.

Movement and Coordination
As much as people with Asperger's Disorder have different ways of thinking, they can also have a different way of moving. We often have an idiosyncratic gait that seems to lack grace. We sometimes have trouble knowing where our bodies are in space, which causes us to trip, bump into things or spill things or knock things over.

While some people with Asperger's Disorder are quite clumsy (like me), there are others that have amazing movement skills. These athletes can be quite astonishing - winning national and international championships. Most of these athletes are skilled at sports that can be practiced in solitude, such as swimming, skate and snowboarding, and endurance sports such as marathon running.

Sensory Sensitivity
The previous categories that I have summarized for you involve tendencies that effect an Aspergian's social reasoning, empathy, language, cognitive abilities, but one of the attributes of Asperger's Disorder is clearly identified in autobiographies, or by self-reporting: hyper- or hypo-sensitivity to specific sensory experiences.

The most common sensitivity is to very specific sounds but there can also be sensitivity to tactile experiences, light intensity, the taste and texture of food and specific smells. There can be under- and over-reaction to pain and discomfort. I can't stand when my dog barks - it physically hurts my ears. I can't stand to have grit on my hands - drives me crazy!

Neurotypical people can be as baffled by why some sensations are intolerable to Aspies in the same way that people with Asperger's Disorder are confused why others are not effected in the same way.


I need to attribute most of this "guide" to Tony Attwood's The Complete Guide to Asperger's Syndrome. I used his chapter titles and scanned the chapters to get a good summary going. I tried to put examples from my life in here to give it some perspective, but since not all Aspergians are the same, I wouldn't want anyone to get the idea that I was the example of what Asperger's looks like in all adults. Although, I must admit, it is what Asperger's looks like in me.

I hope that by spending nine hours writing this "guide" helps my family to see that Asperger's isn't a big scary boogeyman. I hope that they will forgive me the next time I suggest that our wonderful, dear father might have also shared this variant of brain structure.

1 comment:

  1. I just wanted to point out that the reason mom (Susan) originally started saying Grandpa had Asperger's is because Grandma said "That sounds a lot like Dad" after mom explained some of the social interaction traits.

    And I just wanted to add that people with Asperger's do have feelings, intense feelings (Attwood, Tony. The Complete Guide to Asperger's Syndrome. p.130-133). Think for a moment about Grandpa's overwhelming anxiety. If you remember, it was the invasion of Iraq and what he perceived as Bush's move towards a complete seize and control of the government that led to his ventricular tachycardia which lead to his kidney failure and decline of overall health and eventually his death. That was due to anxiety about the state of the world. After he became very ill he spoke to me often about the intense anxiety he had about how the family would fair without him. He didn't want to die because he was afraid of what would happen. This of course was months, almost a year before he died, but those feelings were very real. I identified with them and that is why I can remember them so vividly.

    He had intense joy too. Geology and science were always special interest topics, as was food. If you read the book by Tony Attwood, you will also find that Aspie's often have intense sensitivity to their senses (p. 271-272). I believe that Grandpa's love of food (and we all know how he loved it and talked about it) was a direct result of having a more sensitive sense of taste.

    Maybe he didn't have it, maybe he did. What's the harm in finding similarities to the man we all love and continue to look up to?