Several people have asked me what it's like to have Asperger's Syndrome and have also asked for a better understanding of the DSM criteria. I pulled out some letters and articles that I've written and grouped them with my understanding of the diagnostic criteria.
DSM DIAGNOSTIC CRITERIA FOR 299.80 ASPERGER'S DISORDER
A. Qualitative impairment in social interaction, as manifested by at least two of the following:
(1) marked impairments in the use of multiple nonverbal behaviors such as eye-to-eye gaze, facial expression, body postures, and gestures to regulate social interaction
...Somewhere around 3rd grade, things got ugly. Report card comments and the teachers attitude clearly reflected frustration and anger with me and my school performance. The teachers comments on my report cards reflected problems such as:
Second grade
Third grade
Fourth and Fifth Grades
Although my IQ tested 130+, I was placed in the slower paced reading and math groups. What they didn't understand was that I was trying to learn, I just learned differently from the other kids. Anything that was visual or logical, something that I could draw or see, I could learn. I couldn't learn any other way.
I don't remember too much about being in a classroom in sixth grade. All I really remember about 6th grade was this kid named Johnny, who lived next door and was in my class. He had a little brother who I liked and played with occasionally. His little brother was very smart but was skinny and awkward. He wore black plastic glasses taped together in the middle and no one else would play with him. We got along pretty well, maybe that's why Johnny didn't like me. One afternoon, during a break in class, someone pushed Johnny into me from behind. I went crashing, face first, onto the floor. When I turned around to see who had pushed me, all I saw was Johnny. When I got up, I decked him, right across his face. I'd had enough of his tormenting me. I don't remember what happened after that. I know that my sixth grade teacher wasn't happy with me and I spent most of the sixth grade in the conference room with her. I have no idea what she said to me. I have no memory of her while we were in the room. I remember her presence though.
Each classroom had a stage near the back of the room and a conference room up front. To make the conference room they just put up a glass metal framed wall across the front corner of the classroom. The carpet in this conference room was a burnt orange, indoor/outdoor type. The glass on the wall had wires crossing through them. I guess it's because kids are likely to break them. All I remember from our conversations is looking out into the classroom at the other kids and wishing I was more like them and less like me.
The worst time is when we had a student teacher. The new teacher would only be in our classroom for a few days and the regular teacher and I would go back into the conference room. I remember looking at the student teacher and watching her give the teacher a frustrated look. I think she wanted her help, but she was too busy with me.
I had a sense that my teacher liked me through all this. She kept saying that I was very smart but all my information was locked in boxes in my head and I just needed to open the boxes. I told her I didn't know how. She had done a survey of all the students to find out why they didn't like me. They told her I was mean. She said I needed to be nicer, I told her I didn't know how.
All of the comments on my report cards were much kinder than how I was treated. Back in the sixties, kids were treated differently than they are today - no aides, no IEP's. I got whacked so hard in seventh grade, I thought the teacher had broken my back.
I did make it through school, and have attempted college several times. It seems that my lack of attention span contributes to me not being able to follow-through with things that are not directly related to my interests.
(2) failure to develop peer relationships appropriate to developmental level
...High School
I kept waiting for puberty. I had the physical signs, but never the emotional ones. I never became interested in how I looked or doing anything with boys beyond beating them up. I did such a poor and fast job brushing my hair,= one day I found that all underneath it was one giant knot. So bad, it had to be cut out with a razor blade.
It was much easier for me to be friends with boys. Even in high school my best friend was the kid next door. We played chess, played with electronics and we were very interested in Star Trek and motorcycles. We would play in his room for hours just drawing pictures or playing chess and never saying a word.
(3) a lack of spontaneous seeking to share enjoyment, interests, or achievements with other people (e.g. by a
lack of showing, bringing, or pointing out objects of interest to other people)
...Friends have never been stimulating or entertaining enough for me. When I was younger, I lived in a make believe world that was heavily layered. I was usually watching myself and my activities through a third party. Not unlike a camera watching an actor pretending to be someone else's life. I was very un-flexible and needed to do things my way. It was too difficult to explain to friends what I was doing and I was never interested in doing things the way they wanted to. I had a great imagination - maybe too good. I was always busy in some elaborate fantasy - so it was difficult to break out of that and play with dolls or some other type of role-playing with other kids.
I remember one afternoon, I was in my room building a house for my Barbie dolls. I didn't play with the dolls, but I loved building them houses. I would use cardboard, a bread knife and scotch tape and be totally consumed for weeks on end. We had bought a new washer and dryer and I got the boxes. I had built a 2-story house with an elevator that was moved by string pulleys. I needed lights inside the house so I was contemplating running electricity. I had taken my bedroom lamp, removed the shade, and put it in the living room of my new house. The house was so large, that I thought it would be neat to make the elevators move horizontally as well as vertically. As I was working out the logistics of what I would need to do to make the elevator go sideways from room to room, I smelled something burning. It was my leg. I was sitting Indian style and my knee was resting on the light bulb. I had 21 blisters on my third-degree burn. I went back to my room and finished my house. I never got the elevators to work how I wanted them, but it was a great house anyway. I hated it when they were finished. No other house was going to be this much fun to build.
Today, I still prefer to work on my computer or with electronics rather than socialize. I take a magazine to read with me to all social events that I can't get out of. You have to comprimise if you're going to have any friends at all. I have managed to finally develop some friendships. It was very difficult in my teens and twenties, but it's easier now. Another good thing that helped with friendships, is that I got my friend a friend. They go to social events together and I'm not made to go. E-mail and the internet have been a great way for me to make friends.
People seem to have a tendency of placing their needs and social desires on me. They are afraid I'm bored or would enjoy doing the same things that they do. They continue to think that I need to be with other people to be happy. I try to assure them that I'm am very happy doing just what I'm doing. Most of the time, I get the impression that what they want to say is, "if you liked me enough, you'd come to my party.." etc.
(4) lack of social or emotional reciprocity
...I've never been able to tolerate any kind of physical contact or intimacy. I like wrestling and rough-housing, but I hate being carressed or held. As I grow older and wiser, I realize why I had so many problems in school and in relationships. I did not ever understand that there was a whole sexual revolution going on within my age group while I was watching Star Trek. I still find other peoples sexual interests astounding.
Crying and normal day to day dramatics is very intimidating to me. When I hear someone crying, I walk the other way. It's not a lack of empathy though, it's my fear of dealing with it. I don't know what to say or do, and quite honestly, it scares me when people cry. I am very sensitive. I love animals and have great fondness and feelings for some of mankind - but expressing those emotions is terribly difficult for me.
B. Restricted repetitive and stereotyped patterns of behavior, interests, and activities, as manifested by at
least one of the following :
(1) encompassing preoccupation with one or more stereotyped and restricted patterns of interest that is abnormal either in intensity or focus
...I find it comforting and easy to become quite attached to inanimate objects. As a kid, I wore the same Army hat for years and years. I've slept with the same blanket since I was 2 years old. I collected lots of things, eraser animals, plastic ships. Whenever I could I would sneak them to school and it was like having a friend with me.
Routines are very important to me. When I was younger, I would listen to the same song over and over before going to bed. I would touch the same dolls, the same way every night before going to sleep. Sometimes, when I was very anxious, I would get up in the middle of the night doing the same routines over and over.
...I think I have a great deal of skills because of Asperger's. I can work any kind of computer and any number at one time. The more the merrier. I can work VCR's, phones, radios and just about any kind of electronics. I enjoy anything that's logical, routine and can be anticipated. I am on a computer most of the time. I usually have several of them going at one time. I like different operating systems and the internet.
(2) apparently inflexible adherence to specific, nonfunctional routines or rituals
...I also had many rules, many, many rules. Rules that the other kids didn't understand. For many years I was afraid of standing water. I heard that it was poisonous if it was allowed to get stagnant. I had a rule that I couldn't turn one direction without equally turning back to the other direction. It was like I had a compass in my head and would track how many degrees I would turn to the left and then I would equally turn that far back to the right - that way, I'd be even. Sometimes this would get very elaborate - such as walking through a mall. I couldn't get caught doing this because I knew I'd get in trouble. So, I'd pretend I had dropped something, or looked at something in a way that I had to turn to see it. I had many other rules too - like not stepping on cracks. It's funny - I hear lot's of people think they have Asperger's syndrome. Lot's of people are superstitious and don't step on cracks. The difference for me was that I would not step on a crack or ride a bike over a crack if my life depended on it - everyday, 24 hours a day, 7 days a week. One time when I was riding my bike I swerved to miss a crack and had never heard the car behind me until I heard her tires skidding to stop. I can still remember her standing outside her car, screaming at me. She was much more scared than I was. Probably the most frustrating rule I had was that I had to stand in the hallway and look at the light outside, count to 20, then to 10 without thinking about anything bad. I would stand in the hallway sometimes for hours. On bad nights, I'd hear Mom and Dad get ready for bed and I'd sneak back into my room and lay in bed and wait until they closed the door. I'd get up and start again until I could do it. Sometimes I'd get so frustrated I'd hit myself or start to cry. I would never let anybody know because I knew they wouldn't understand.
This is something else I always thought I'd grow out of - I'm still waiting. The rules have changed through the years - sometimes more, sometimes they calm down a little. The thing about them is that they are real, every day, every time, no missing. People have asked me, what happens if you don't do them?, I laugh, because I've never missed. They don't make any sense to me either - but that doesn't seem to matter. Logic, reasoning, nothing changes them. All I know for sure is that the more anxious I am, the more rules I have. And I'm very anxious about things and life.
(3) stereotyped and repetitive motor mannerisms (e.g., hand or finger flapping or twisting, or complex
whole-body movements)
(4) persistent preoccupation with parts of objects
...Another problem with playing with other kids is that they weren't as interested in the same things I was. For awhile I was obsessed with being a crossing guard. Later, my fascination turned to getting hurt. Neither of these things are condusive to other children playing with me. I would pretend that I had something cut, sprained or broken. I would make slings and crutches with anything I could find. I had one set of crutches made from tent stakes and crochet mallet heads. Curtain rods where another thing to use as canes and crutches. I'm certain I was a great embarrassment to my parents and neighbors. I didn't really care and when I actually did get hurt, the attention scared me to death.
One time I was jumping over the metal rods that hold up the bleachers at a college football game I had been taken to. I was going back and forth, jumping every rod. Eventually I got tired and once, my foot got caught and I came down square on my knee. Two policemen saw what had happened and came running over. After assessing the situation, they determined that they should call an ambulance. I panicked. I begged them to let me go and assured them that everthing was okay. My knee was numb and I ran away as fast as I could.
Today I enjoy working on my computers, swimming and playing computer or nintendo games. I not longer have any interest in getting hurt or being a crossing guard.
C. The disturbance causes clinically significant impairments in social, occupational, or other important areas
of functioning.
I'm going to add other areas that I find difficult to manage and I think are related to Asperger's Syndrome - temper and sensory issues.
...My temper has always been lousy. I started off holding my breath when I was 5 months old. My mom was putting a bonnet on my head for Easter and accidentally hit my head on the crib rail. Minutes later, after not making a sound, I turned purple and passed out. After that, every time I was smacked hard, I held my breath until I passed out.
One time, Mom said she looked out the door and I was running out into the the street. While she was leading me back to the house, she smacked me on the butt. I didn't make a sound. I passed out in the front yard and after she pulled me up she had to pick the dirt and grass out of my mouth. I stopped doing it when I was around 2 years old.
I've always been very, very angry. When I was about 8 years old, I was walking in the creek. I looked down and saw a broken beer bottle standing straight up in the water. I was angry when I saw it. I stepped on it. My foot was cut in several places and I was amazed that it didn't hurt. I realized that I was learning how to control some very intense emotions. Anger was the most available, and the easiest for me to use. Picking on other kids was also a common activity all through school. Watching someone elses pain was a good way of expressing my own.
As I've grown up, I've moved on to punching and throwing things. I punched kids for while, but I stopped doing that. I've thrown typewriters, motorcycles, punched doors, walls, dashboards, windshields, you name it. I've broken my hand a couple times. My looming temper is something that has been very difficult for me to learn to control.
Sensory issues
...As an adult, one of the things I hate is sitting at a table waiting for the waiter to take away my dinner plate before too many more people notice that I haven't eaten anything. It's another business function dinner in which someone else has picked out the menu. The food is not prepared how I'll eat it and there is sauce and spices over everything. I'm hoping the waiter won't ask me if anything was wrong with my meal. Now, I'm sitting at a social function, wearing uncomfortable clothes and I'm hungry. I wonder if anyone will notice if I eat another plain dinner roll.
It's gotten better, when I was little, I remember my best friends mom sneering about having to make my sandwich special, jelly-only. Fruit Loops, I would eat the red ones first, then the orange, then the yellow - no cheating. So, I have improved, I can eat fruit loops like 'normal' people now, most of the time. I'll never eat a peanut butter and jelly sandwich though.
I remember sitting at the table and hating dinner time - staring at my food knowing that it would make me gag if I tried to eat it and that would make my parents mad. Other people, constantly being teased about how I eat my food. Kids are supposed to like chocolate, whipped cream and maple syrup, I didn't. I don't like vegetables either. Cheese, creams, sauces, cassero= les, salads - nothing. I hate being invited out or over to eat - it's never how I can eat it. People kept telling me I would grow to like other foods, I'm still waiting.
Another sensory thing that I have is that I'm very particular about things I touch and things that touch me. No perfumes, hand lotions, creams, chapstick, suntan lotion, etc. In the summer I'm white as a ghost and the winter my lips are chapped and cracked. I'm fairly sensitive to temperatures too, I hate being cold most of all.
I don't like loud noises or high-pitched tones at all. I was one of the few teenagers turning the radio down.
D. There is no clinically significant general delay in language (e.g., single words used by age 2 years,
communicative phrases used by age 3 years)
...I must've been quiet, I remember Mom telling me about my family leaving me in a shoe store. As they all met at the car, they noticed I was missing. When they went back, there I sat, hadn't moved, no expression. Mom said she can still see me sitting there in my white coat and shoes that didn't even reach the end of the seat. They left me at church once too. This time they got all the way home. Mom said when the drove back the lights were out and the doors were locked. She looked though the window and saw me walking down, the hall with the nursery school lady.
I had my tonsils and adenoids out when I was five. I was a sickly kid with allergies and the croup. Asthmatic and the doctor reports states that I couldn't hear for several months. At two years old I contracted shingles. They had thought it was diaper rash. I took allergy shots until I was ten or eleven.
On my forth birthday, my parents had me on one of those local TV shows where the birthday kids go up and say who they are and how old they are in front of the camera. I remember sitting on a set of bleachers off to the right side of the stage. My memory then flashes to all the children being gone and the clown coming to get me. As I sat on the bleachers, staring, he walked over to me and picked me up and took me over to where you are supposed to stand. I don't remember saying anything, the clown was talking and holding me towards the camera. It's a strange and fragmented memory.
I remember the house, the yard, the neighborhood and some significant toys but I can't remember my Mom, my Dad, my brother or my friends. I can't remember learning to ride a bike, going to school, Christmases, holidays, Grandparents or bedtime stories. The only times I remember me is when I'm angry at someone. When I remember these events, all I remember is me - from a third party. Similar to an observer, but only seeing me. When I had my tonsils removed I remember getting one of those colorforms toys. After I got home, I was laying on the couch and I wasn't feeling well. Mom had cut my finger nails and hurt my thumb. All I remember is laying there, being angry at her. I can't see her in my mind but I'm sure she's there. I remember looking at her, I don't remember seeing her.
Today I have no trouble with language and talk as much as everyone else does. I enjoy being quiet though, more than I enjoy talking. I did poorly with english in school and am still not very fond of written communication. I like to play with words, like puzzles and chess games but that's about it. I hate the phone - I hate talking on it, and I really hate describing things over the phone.
E. There is no clinically significant delay in cognitive development or in the development of age-appropriate
self-help skills, adaptive behavior (other than social interaction), and curiosity about the environment in
childhood
My curiosity is something I've enjoyed. I'm very curious about my environment and about how things work. When I go to a new city, I love to learn about the exchange rates, the tranportation systems and find maps to where I am. I love maps.
F. Criteria are not met for another specific Pervasive Developmental Disorder of Schizophrenia
Most of all, what Asperger's Syndrome means to me is that I'm different, but big-deal, who isn't. I have some wonderful strengths and I have some significant weaknesses. For the most part, it just seems to me that I am normal and everyone else is different.
Comments are welcome. If you send an e-mail to
bkirby@udel.edu I will be happy to foward your message to the
author.
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