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.

He said, "I use my brain halves to the most extreme separation."

September 10, 1986

Two weeks of school have past and I am getting used to it. The house is falling apart a bit, but I throw it together when I have the time. I have just tons of classes and from each a monstrous amount of work - 16 hour grids for visual studies - compositions for english - about 50 pages of reading for art history - 20 pages for humanities - a wooden toy for shop - buy a roll of film for lens media...on and on. I started a 3 hour drawing of Cris - did his face fantastically, then moved on to his hand and he moved on to his hand and he moved and rearranged everything so I couldn't continue. I applied for work study - probably won't get a job - but it's worth a try - money is really a problem to grapple with.

Cris is enjoying watching the kids. He does have a bit of trouble with ianthe - but she is just a baby and it was hard even for me to remember just what to do with a baby.

September 15, 1986

Sitting up so high in the fourth floor by the window. I can see Ann's dorm. I like Ann. When I first saw her I thought, "Oh God, She looks just like Char - gross." Not because she is ugly but because of association. I can also see the tower that is on the same block as Cris' apartment.

I try to talk to him and see what it all means to his life - but he is just so strange. He said last night that he realizes that he is using his brain halves to the most extreme separation. That he is extremely logical - philosophical and life in general - and when he does his art he is extremely emotional. There is no middle ground for him. Maybe he can only express himself through his art. There might be a way to blend things. Maybe he could tell me how he feels e.g. answer my questions through art.

I really ought to give it a try. Anything just to keep from stagnating in our relationship. I must keep it alive, changing, vibrant not only for Cris, but for myself so I do not go crazy.

Escape - that is what we desire but we are bound by circumstances. I don't think that it is as heartless as all that but it just touches the surface of how we all must feel. Cris said, "I hope that, someday we'll live in a world without love".

Love after all is just a feeling - it is not a state of being - you cannot be in love anymore than you can be in happy or in sad. Love is the feeling you get when someone is important to you - without strings attached. That is the important part - without strings or rules. I want rules but really it's all just a matter of respecting the other person's being. Love is more common feeling than people realize - it's their dependency that most people label as being love - but I can feel love with Ann or Sara or Peter for that matter. You know when something feels good. You wouldn't go out of your way to hurt others whom you feel close to, now, would you?

I ran out and bought a second "Complete Guide to Asperger's Syndrome" by Tony Attwood today. My first copy is in ruins, having been paged through and page worn by my three children. Aja said that the others would be relieved, that they were frightened to give it back to me in the condition it is in. I love books. I don't think you understand my love of the physical book by that simple statement. I really love books. I take great care of them. I try never to crease their bindings. Upon purchasing a softback book, I condition the spine by opening up the book, first 25 pages from the front, carefully press open holding the book spine to table. Open the last 25 pages, press them to the table, repeat from the front until you have reached the middle. Never fold a page corner to mark your place. That would be a terrible thing to do. Never place an open book face down and open upon a table to mark your spot. Make sure your hands are clean and dry. Do not sneeze into your book. I have many Book Rules. 

When I first started dating Anthony, I wanted to give him a special book to read. It is Sombrero Fallout: A Japanese Novel by Richard Brautigan. It is an out-of-print book by my favorite author. Actually, Ianthe is named after him in a circular way. His daughter is named Ianthe - that is where the name came from. So, wanting to offer a favorite book to my wonderful friend, I proffered my treasure to him in a zip-lock bag, along with a long list of instructions for its care. Anthony accepted my gift, but later returned it unread. He never dared to open the baggy. 

Maybe it is a good thing that I am planning to take up my studies again, starting with a Masters in Library Science and Information Systems (that makes my heart sing - lol) and if I still dream it, continue my studies with a Doctorate in Archival Studies. 

Books, Books, Books, lovely books, they are my friends and have helped me understand the world. I know I digressed with my book story, away from my original thought: which is an explanation about what I was thinking when Cris was confusing me with his talk about how he was using his brain. I was fascinated. 

At the time I was reading books about how to mend a broken relationships - that confounded me. I had three babies and an absent husband - one that told me that he would never divorce me, but that he would never be back. I used the advice from my relationship book. I told him that he was free. He could do what he wanted and I would still be there for him, unconditionally. Well, you can guess how well that worked out. As the next few days of this blog unfold, I will sway back and forth in confusion. Thinking "What the Hell is Going On?"

Who would have thought that people don't think exactly like me?! Or not know exactly what I want from them?! I kid, but before October or November of last year, the thought NEVER occurred to me. Hard to believe for an NT (neuro-typical), but true. Evidence of my under-developed Theory of Mind is found in the "we" statements I make in this and several entries about how "we" must feel or think. From Tony Attwood's book on Theory of Mind (ToM), which Absolutely Fascinates Me (page 120):

...due to the differences and nature of ToM abilities in the cognitive development of children with Asperger's Syndrome, they may develop a different form of self-consciousness. The child may acquire ToM abilities using intelligence and experience rather than intuition, which can eventually lead to an alternative form of self-consciousness as the child reflects on his/her own mental state and the mental state of others. This highly reflective and explicit self-consciousness has been described as similar to that of philosophers...

Now, considering the fact that I had grown up with a sociopath, I did not have the highest quality of input with which to develop the ability to recognize and understand the thoughts, beliefs, desires and intentions of others in order to make sense of their behavior and predict what they are going to do next (these are the concepts that Theory of Mind entails).

I had met Cris, three months into my 17th year. I had graduated high school at 16, and my social life was extremely controlled as a child and teen. I am 24 at the time of this entry. I had spent seven years with Cris, being told that it was "I" that was the crazy one; "I" after all, had been diagnosed as a paranoid schizophrenic (he claimed, discounting my research and study, not to mention I was FAKING it). Seven years of developing my Theory of Mind using a narcissistic sociopath as a model of human behavior. No wonder people are frightened of me at first!

Stones

January 27, 1987

I used to look for stones as a child. Dig them from the asphalt if I thought they might warrant a rescue attempt. My parents had a rock path that curved from the backyard along the side to the front yard. The backyard path had small sharp stones that we would pile up on our laps to feel the warmth of them. They hurt to walk on occasionally but the front yard path had larger, smoother stones. Round and smooth mostly. Although the backyard had a few hidden agates and a multitude of quartz, the front path had mostly granite and hard black stones which always eluded a name. Some rocks were sandstones and limestone which we would hunt up to make a hopscotch board on the sidewalk - other specially selected stones served as our markers to throw. We would look for flat stones that would rest and not roll when thrown.

Odilon Redon "Ophelia"

I am drawn to the painting called Ophelia. It is beautiful and daintily painted in muted colors. It was painted in 1905-06, oil on paper, mounted on board. It seems to be a dream that Redon painted. He must have worked in a dimly lit studio and danced while he painted. Ophelia looks down. She appears to be in love. She is in the lower half of the painting. She is cut off mid-waist. The dress below her breasts loses focus. She is wearing a blue dress over a white under-dress it is falling from her right shoulder. The white dress appears trimmed by lace. Ophelia has long blond hair falling behind her left shoulder and in front of her right as she is leaning towards and shyly down in profile.

She has a ring of delicate flowers in her hair. In the background it appears to be a vague landscape. Reddish tones to her left and cooler greenish tones to her right. Yellow and red flowers behind her body and an abstract tree limb - very thin rises from the slope of her shoulder and titled head to the top of the painting, the sky to the left of the branch is grey-ish blue, while the right hand sky is a peachy-green color blending orange at the midpoint of the painting near Ophelia's face reminding me of autumn.

The title, Ophelia, gives the work - or rather reinforces the mystical, mythical beauty of the piece. Upon walking towards this painting, I was distinctly satisfied by the title. Ophelia seems to be of another century - possibly the 16th century. A worker, or servant, well dressed but not splendidly.

Ophelia appears to be awaiting (or possibly seducing) her lover. She at times looks a little sad and forlorn - maybe he is never going to show up.

The lines that Redon used in his painting of Ophelia are delicate and pliable. They are softly and irregularly placed about her outline and dress. Small bits of color brighten up the composition - small, thin, areas of excitement within a soft and subtle painting. The blending of the oil colors helps give me a sense of peace. Had they been used without blending, placed side by side, the feeling would have been totally different. Ophelia seems to be outside - the light having a blueish tint to it, it must be during the middle of the day in the shade of the woods.

The composition seems flattened. She does not seem to be out in the open. This adds to the cozy feeling of the painting. Very few cast shadows are present - Redon used shading on the contours of her dress - her armpits, and behind her neck on her left where her hair is falling. This shadowless-ness increases the feeling of her being in a shaded area.

Although I say she looks as if she is in the shade - she appears well lit and the picture is bright, if not a bit muted, not quite pastel. The color of her hair and skin are very much the same - reminding me of warm butterscotch but chalky.

We seem to be on the same eye level - Ophelia and I. She does not appear as much as a goddess or villian. She is someone we can relate to. I want to know her.

Both of these entries are from school. The first a writing prompt. The second an analysis of a piece from the visiting exhibit at the Minneapolis Art Institute. I find it remarkable that one day, I could be in a physical fight with Cris, and the next day, calm and relaxed. 

My feelings have always been short lived. I feel "calm" as my default when I am alone, or in a comfortable place. The week before I was diagnosed with Asperger's, I made a Mood-a-Meter in my classroom to visually represent my state of mind (because students are often afraid of me at first). I have my "normal daily moods" Calm-ish, Manic, Tense, Nauseous, Snappy, and Irate. On the fringes, some less common moods - on the calm side: Numb, Hopeless, and Despair; on the irate side: Crazy-eyed-Serious and the least common of all Dangerous. My students kept asking me, "Where is your Happy?" I was confused, "Calm-ish of course, aren't you happy when you are calm?"  After my diagnosis I realized why I had no "Happy". I have a limited emotional "vocabulary". It had never occurred to me that I felt anything different than those around me. I have since realized that I actually FEEL emotions - I mean I physically feel them - as a sensation. I feel the adrenaline released from my pancreas, I feel hormones secrete from my thyroid. Do you "feel" your emotions? or are they more intellectual? I bet you never thought about it before.