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?

Language
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.

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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.

I smiled as he talked

July 16, 1987

I went downtown yesterday on my way to Job Service so that I might find a job. I waited quite a while on the bench at 7-11 down the street. A garbage truck pulled up across the street, two big men got out of the truck both wearing white work gloves and preceded to dig in the garbage - they carried what they could find over to the truck and threw it in. They kept looking at me. I wondered why. They both climbed onto the back, signaling to the driver that it was OK to go and as they drove off they kept looking back at me.

A short while later, I noticed a red truck on the driveway where the garbage truck had stopped. I could not remember if the truck had been there earlier or if it had just arrived. I heard a funny buzzing like a kid's dirt bike and looked at the intersection. A man driving a lawnmower with a canopy cruised through and into the 7-11. Later, I saw him return from whence he came.

The man who had arrived at the bus stop at approximately the same time as I and who had been standing the whole time - looking for buses - decided it was time to sit down. Soon another woman joined us. I knew the bus would come soon now - she looked like she knew what she was doing. I again looked at my money - 2 quarters, one a little older than the other and 2 nickles. I had arranged them so all the heads were up and each at a slight angle to each other. I mixed them up again and as I was arranging them once more when the bus arrived.

I stood up as the two other people quickly formed a line. I decided to wait, seeing that on past experience, drivers don't usually stop at the head of the line, leaving everyone tense and nervous. I boarded the bus last.

At Lake Street, I looked up to discover that I was in an empty bus - not empty of people but empty of all those signs and advertisements you find in all buses. I remembered we were on a white bus - not one of the new white buses but a red one that had been painted white for whatever reason. Oh, so this is what these are like. It was like a zero-gravity chamber.

At the job service counter, I asked about what I ought to do - signed my name on a sheet of paper and began looking over the jobs available for the day in the microfiche.

Soon we were all called to our meeting to be oriented. The man who performed our orientation sounded like a game show host - he was so god-damned enthusiastic about the opportunities he had to offer - I smiled as he talked.

After filling out an application, everyone was assigned a counselor. I was the last one left in the room. The man I was stuck with was very, extremely rude. Not outright but I could sense it. I went back to the microfiche to look for an orderly job. Found one I was looking for and saw a different, nicer counselor who referred me to the job. I sent a cover letter and a resume this morning.

Later I went to the dentist with Aja. He almost killed me. Aja didn't have any cavities.

It seems that this is a laundry list of descriptions of the way My Asperger's presents itself.

I stare at people and wonder why they stare back. It never occurred to me that they stared back  because I stare at them. 

I play with small objects. Arrange things, anything. Coins, toys, papers, small bits of lint. It is soothing to arrange and rearrange. When I was a child, my favorite pass time was building Lego houses for my bus babies (Fisher Price Little People - I call them bus babies - because they came in a bus...). I would build the same house again, over and over, with minor changes. Always the same. Sometimes I would build hospitals and hotels. Each would have the middle corridor and matching rooms and either a nurse's station (in the middle) or a check in counter (near the door). I love to play by arranging, and repositioning.

I mind read. My underdeveloped Theory of Mind (ToM) skills made me believe that I knew the intentions of of others. I knew the bus driver didn't stop at the head of the line because it amused him - a little game to play to make the day go by faster. Well, if I were a bus driver, that's what I would do. 

I stick to the edges. If I am in a group, I like to be on the edge. I prefer the front, so I can pretend there isn't anyone else. If I can't be in front, I like to stick to the edges of a group. In a line, I prefer to be first or last. If the line is very long, I will leave plenty of room between myself and the person in front of me, hoping the person behind me follows suit. I hate to be near people I don't know. I don't want them to touch me. It scares me. I avoid crowded places.

I am really rude. My rudeness brings out the worst in people. "The man I was stuck with was very, extremely rude." People I interact with, that I want something from - I am quick to judge. I immediately like or dislike people. I treat people who I immediately distrust/dislike as if they are the lowest order of life forms on earth. I am rude. I always thought it was THEM - not me. I am trying really hard to not be rude to people. It is extremely difficult. Sometimes something snaps inside me - the Aspergian - and I sneer at you, I roll my eyes, I discount your words, I wave you away with my hand.

I feel pain. Actually, I feel my whole body. Every part of it. All the time. I feel my clothes. I feel the hairs on the back of my neck. I feel my eyelids touch when I blink. I feel my insides, my bones, my muscles, my joints. I can pinpoint in my belly where the adrenalin enters my body. I feel when hormones are released that cause excitement, sadness, anxiety. All of my "emotions" are physical feelings. I used to have a high tolerance for pain when I trusted who was inflicting or caring for my pain, but at some point - I know I could look up the date - I stopped having any tolerance for pain. A sore thumb becomes all I think. Pain. I can't take pain.

We must be poor losers - Indeed

 September 22, 1986

Yesterday was my birthday - it was the nicest day I've had. We went to my dad's with Ann - to work on our boxes for shop - which were due today. Cris helped me a lot - gave me the idea and helped with the technical problems and all. My dad helped Ann do hers - they both turned out quite nicely. I think we have done well on our grades. I hope at least because it is worth 70% of our grade - EEK!

Cris bought me a fish for my birthday a few days ago and I thought that was my present - it was a beautiful black moor. I loved it and was very content, but when I got home from my parents he brought out even more! A funky sloop sticky thing like I've always wanted since I was a little girl - no shit - and an e.e.cummings book - wonderful and a full sized chess set.

We played later. We are both so bad at losing I don't know why we play. I think we must play until we can get used to the losing part. It's so insane. Some sort of deep psychological struggle we must over come. He captured my three last big playing pieces in three moves and I almost started crying. I just don't understand. Oh Well. We must be poor losers.

All in all it was a great day. Couldn't have been better. I feel quite close to Cris, of late.

Here I go again, with all these "we" statements. No one was a poor loser but ME. Cris always won. I never understood chess until years later - 1993 - the year after my bone marrow transplant. I bought a house in South Minneapolis with the money that I had received from Social Security Disability. My mortgage payments plus insurance and taxes = $279/month CRAZY!

I had moved into the house with another single mother, who had a toddler. I was subbing on and off. She got a job driving a school bus. One day, I was going to sub and I discovered she had left her baby with me - no baby sitter!!! I was late for my sub job - they never let me come back to their school again. She never contributed to the house. Once I went grocery shopping and did not buy popcorn. She was mad that I didn't notice that we were out. So I drove to the gas station, bought a bag and threw it at her as she lay in the living room chilling. Soon, I asked her to get the hell out of my house.

Cris, who I had divorced, was living in Bayport with his mother. He was wearing out his welcome. His Step-Father was calling him a leech - lawls. I was thinking, "Hey, I could work nights". Subbing was making me sick with my brand new immune system. I told Cris that he could move in to watch the kids while I worked. Stupid idea, I know.

We started playing chess again. I began losing again. I was always angry, sometimes tossed the board to the floor when too many of my pieces were lined up against his the side of the board. I had bought a Child's Book of Chess for the kids. I picked it up one day, thinking that I could get some idea about the game. The book was wonderful, magical. It described why pieces were laid out the way they were, and why the moved in certain directions, e.g. the church has the ear of the Queen and King. I learned the history of the game. The basic strategy - protect the four squares in the center of the board. The King is the Most Important Piece - not the Queen! The pieces had value, so you should trade them accordingly. The point of the game = capture your enemy's KING. I was always just looking at how pieces could move and trying to whittle down the opponent's pieces. The King was just one of the pieces to consider. My idea of the game was similar to Quiddich, where it is important to try to score as many points as you can but, in the end, it is the golden snitch that wins the game.

Wow! I never knew! I played Cris that night. He laughed when I said that I had read a kid's book of chess. He mocked me. I beat him soundly. He never beat me again at chess. I read more chess books. After awhile, he didn't want to play with me anymore.

Chess became a special interest of mine for several years but I have more recently abandoned it because I am much too emotionally involved when I play. I shake and sweat.  I am very angry when I lose. I am very angry when my opponent refuses to acknowledge the beauty and strength of my position. I am angry at people who use petty tactics to win. I have no ability to detach myself from the game. I am the game. I am the army. I die a little inside when my pieces are captured and my beautiful defense is destroyed .

I am the poor loser, not we, nor anyone else.