Wednesday, November 13, 2013

I have Asperger's Syndrome

Asperger syndrome (AS) is an autism spectrum disorder (ASD), one of a distinct group of complex neurodevelopment disorders characterized by social impairment, communication difficulties, and restrictive, repetitive, and stereotyped patterns of behavior.

All of my life I have been something of an odd one.

Growing up I rarely had many friends. I was the kid who got picked last, who got picked on, who never could understand why people didn't want to be around me. But I didn't know what to do about it. Moving every three years certainly didn't help matters, but I just didn't know how to read people, how to do well in social situations. Why didn't I just go out and make friends? I really didn't know how.

I participated in Cub Scouts, but other than that, never did the "guy" stuff. Never enjoyed fishing, never had an interest in cars, I enjoyed sports but not participating in them, just watching and reading about them. It wasn't only that I was not interested, but that it hurt to try to do things that boys were supposed to do. I didn't know how to do them. The more I tried the more I was mocked. After awhile it just wasn't worth it to try.

I was painfully shy.

Two core features of autism are: a) social and communication deficits and b) fixated interests and repetitive behaviors.  The social communication deficits in highly functioning persons with Asperger syndrome include lack of the normal back and forth conversation; lack of typical eye contact, body language, and facial expression; and trouble maintaining relationships.

Was I interested in girls? Oh hell yeah I was. But girls were not interested in me. I couldn't talk to them. When I did work up the courage to talk to them I was shot down. On the rare occasion when a girl talked to me I didn't know how to respond. I had no clue what was acceptable behavior in these situations. It's not that I had an idea but was bad at it; I literally did not know how to respond to people. Therefore I ended up responding badly.

I was a reader when I was young, and at some point I decided I wanted to write. I started a journal, and attempted some fiction writing. Quite frankly, I was pretty decent at it. So what should a guy do if he had some writing talent and wanted to try to get the attention of girls?

If you chose "write sex stories, illustrate them and shove them in girls lockers", you would be correct. What would now get me busted for sexual harassment was then just a teenage boy being an jerk. It wasn't that I knew this was socially unacceptable behavior and did it anyway- I just didn't know.

Social and communication deficits? Yeah, I had a few.

Fixated interests and repetitive behaviors include repetitive use of objects or phrases, stereotyped movements, and excessive attachment to routines, objects, or interests.  Persons with ASD may also respond to sensory aspects of their environment with unusual indifference or excessive interest.

I love music. I got my first rock album when I was 11 (Love Gun by Kiss), and I was off to the races. Allowance money usually went to music. I joined record clubs (often multiple times under assumed names) in order to amass a large collection. Kiss dominated my early interest, but soon I heard Queen. And AC/DC. REO Speedwagon. Journey.

I was a journal writer, and at some point I made a weekly top 15 album and song list part of my routine. I did this for seven years, from the time I was 15 to 22 and the end of college. But it wasn't just a weekly list. I kept detailed stats. How many weeks was Go Your Own Way number one? 18. Can't Fight This Feeling? 17. Not Of This World by Petra spent 25 weeks at number one, followed by Beat The System, also by Petra, which spent 31 weeks at number one. Hi Infidelity by REO Speedwagon spent several years bouncing around the top 15, as did Rumours by Fleetwood Mac.

I assigned point totals to the weekly lists- 15 for number one, on down to one for number 15- and compiled cumulative stats. At the end of the year I would award song and album of the year to whoever had the most points, as well as artist of the year. I spent hours compiling these numbers. If a total didn't come out right, if I forgot to include one week of one song, I couldn't just ignore it. I had to start over from the beginning. No one would know. But I would know, and I couldn't let it rest.

I developed a number of repetitive routines, some perfectly normal, some nonsensical. The pillow on the bed has to be facing with the opening of the case to the right. I cut my spaghetti across and then down, making a sort of tic-tac-toe grid with my fork. Same with my French toast. Two down, two across, so I had nine squares. Then and only then could I eat it. If the knuckle on a finger on my left hand cracks, I have to crack the corresponding knuckle on the right. But I don't crack the middle finger on my right hand. I never do that. When I eat M&Ms I sort by color and eat the red and blue ones last. I don't know why. I just do.

"I would rather be 20 minutes early than one minute late." A mantra that I have carried into adulthood. And there is nothing wrong with the desire to be prompt. But it was more than that for me. I physically couldn't be late. If I knew I was going to be late I would get nervous, and then feel it in the pit of my stomach. Even if I was in the middle of a raging snowstorm and every sane person would understand why I didn't make it somewhere on time, I couldn't deal with it. Anxiety abounded.

A large proportion of people with Asperger’s Syndrome–perhaps especially those who are higher functioning–suffer from some form of depression. It is unclear whether this depression emerges as a result of the struggles, exhaustion, rejection and failures so often present in a life with Asperger’s Syndrome, or whether the mysterious neurology of AS somehow invites, or includes, a hard-wired affective disorder. What is clear is that people with Asperger’s Syndrome can end up particularly entrenched in their depression, and be difficult to treat or “cure.”

I didn't get my first job until I was 19, which necessitated my getting my driver's license at 19 as well. Where most kids start working at a paper route or McDonald's, I didn't. I was afraid to.

I did go to college, graduating with a degree in education. I didn't go on to teach because I failed student teaching. When I finally had to go in front of a class, I was bad at it. The worse I got the more the participating teacher gave input, which made me nervous and caused me to be worse at it, and eventually they took me out of the program. After I graduated I got a job delivering pizza. I did that for two years, and hated it, but was afraid to look for something else.

Finally I got fired. A month later I got a job in a book warehouse in Oberlin. The night before I started was horrible. The nervous feeling in the pit of my stomach became a raging storm. But I made it in, and spent six years there. I developed the reputation for being a firebrand, the rebel of the department, the Robin Hood standing up for the poor workers. It never occurred to me that supervisors didn't like to be told publicly that you think they are wrong. I never thought that handling a problem meant going up the ladder of authority, I just went straight to the top. Of course, that lack of social skills and propriety meant that I had the cojones to call the president of the company and ask if he ever raffled off the company wrestling tickets (as he often did with baseball). I ended up being given the wrestling tickets for several shows.

My lack of social skills led to my being fired from the book warehouse. It took me nine months to find my next job, a candymaker at a local factory. In the months leading up to that job I had temp jobs offered to me, but the night before I was so overcome with anxiety that I spent the night crying hysterically, only stopping when I came up with a way I could get out of it. I never told anyone about these anxiety attacks. Until now. A guy just didn't do that. Gotta buck up and be a man.

I enjoyed the candy factory, but it became apparent that my performance wasn't up to standard and I was fired. It took over a year to get my next job, a part-time job at the public housing office. Again, I became ruled by anxiety. I had a couple of factory jobs that I left after a day because the anxiety was making me physically ill. I stayed a year at the housing office and was even promoted to Section 8 caseworker, but the combination of the increased workload and training regimen, the death of my much-loved grandmother, and the diagnosis of my son with autism led to me almost having a breakdown. I left that job a broken man.

Do children with AS get better?
With effective treatment, children with AS can learn to overcome their disabilities, but they may still find social situations and personal relationships challenging.  Many adults with Asperger syndrome work successfully in mainstream jobs, although they may continue to need encouragement and moral support to maintain an independent life.

I see a counselor on a regular basis to work through this stuff, as well as a psychiatrist who manages the meds that keep the demons at bay. It was this psychiatrist that I posed the following question- I look back on my life, the hurt and pain I've caused people, my many failures, and I think Man, I am one screwed-up individual. How the hell can I be a husband and a father? What kid should be cursed with a father like me? And after much discussion, it was this same psychiatrist that helped me see the answer. There is a reason why I've behaved like I have; not an excuse, mind you, but an explanation that helps me understand the past and deal with the future. An explanation that helps me understand that no, I am not an evil person, I am not someone that has screwed up so bad that there is no chance for redemption. An explanation that helps me realize that when I was a kid, I just didn't understand why I did things that I did, so I didn't have the tools to make the change.

Hello. My name is Sean, and I have Asperger's Syndrome.

(Hi, Sean!)

2 Comments:

Blogger Greta F. said...

Sean, it makes me sad to think about how you suffered through the years with an undiagnosed condition. I know that you are not alone. Thinking back, I now realize that many kids I knew growing up must have been struggling with undiagnosed conditions, including AS and ADHD. I am also grateful that you grew up in the 80's instead of now...those lists would have gone viral! When my son was in 7th grade he drew a tiny cartoon of a 1000 lb. weight falling on the head of a substitute teacher that made him angry. Someone found it, turned it in, and by the reaction of the school, you would've thought he was the unibomber! Take care Sean. Your family and friends love you just the way you are.

1:25 PM  
Blogger Uniting Autism said...

I can only imagine the sense of relief you felt after learning this. Sometimes people say labels are not good because of one reason or the other. In this case, I am sure it gave you a sense of closure and or relief. I can only imagine all the pain you felt all these years.

10:08 AM  

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