Coming Out

Whoa, it's been almost 6 months since my last blog post! Sorry about that! They will be more regular from now on, promise!

Today I want to talk about coming out of the closet, and I don't mean as gay: I'm not gay and there is already plenty published on that subject. No, instead I want to talk about coming out about the "thoughts" that I had growing up that I felt were somehow wrong; these thoughts were generally related to my obsessions. In fact, they were usually my obsessions themselves that I felt were wrong. My parents didn't openly question the obsessions I tended to have with movies and television shows until I hit adolescence, but long before that I was aware that such persistent and constant thoughts about one thing were not "normal."

For example, when I first saw Back to the Future and Back to the Future Part II at age 9, I was hooked immediately. Obsessed. Couldn't get my mind off the movies. The day after seeing them, I just wanted to talk about them non-stop. But because I was so aware of how strong and unrelenting this desire was to intensely revisit these movies the day after seeing them-- and how odd such a desire was-- I barely spoke two words about them. 

As another example, when I first saw The Addams Family movie at age 11 I became obsessed with it, much in the same way I was with the BTTF movies. Uncle Fester was my favorite character (Doc Brown was my favorite in the BTTF movies; I think Christopher Lloyd's frenetic characters just appealed to me!). On a children's radio show that I was listening to, a girl who called in mentioned in passing that she did not like The Addams Family. (For those of you not familiar with the plot, please read this article in Wikipedia before continuing reading the blog entry). The girl stated that the Uncle Fester that was in the movie turned out to be an impostor. Instead of laughing it off, I obsessed over this for several months until my older cousin cleared it up for me. I think it bothered me because I felt that the "parallel universe" in which my obsessions lived was at least in my control, but this girl's statement threatened that control. The idea of my being that grossly wrong in my comprehension of the movie was unacceptable. 

My next obsession, from ages 12-14, was the Cold War comedy The Russians are Coming! The Russians are Coming! I always greatly enjoyed the background music composed for the film, particularly the scene in which the Russians first come ashore. Of course, the soundtrack was not available. One day, when I was 13, I set up a tapedeck next to the television to record when scenes with the soundtrack came on. I did this one day when I was home alone. Why? Even though my parents wouldn't have given it a second thought, I thought it was weird that I wanted the music from a film so obscure to my generation. Let's not forget the fact that I knew that being obsessed with this movie was bizarre. Whenever I listened to the music, I did so on my Walkman so my parents wouldn't hear it and ask what it was. 

If I, as the person experiencing them, had a hard time accepting these weird thoughts as "normal," why in the world should I have confided in my parents about them? Eventually I did come out of the closet, but very slowly. At age 14, I began talking to my Dad a little about my obsession with The Russians are Coming! The Russians are Coming!, but I didn't talk to him about recording the music. At age 16, I began speaking to my parents (usually through tears) about my obsessions in general and how "wrong" I felt they were. They tried to assure me that nothing was wrong but I knew that they were just trying to make me feel better. They had no idea what obsession meant, at least as I defined it.

When did I finally come out about my obsession over Uncle Fester's authenticity? At age 18, nearly SEVEN YEARS after the incident occurred. I was THAT embarrassed about it! Keep in mind how long seven years is when you were a kid. In tears, I confessed to my dad about how long this weird concern had, well, festered inside me and how I knew that it was "abnormal." My dad asked me, "Why didn't you just ask us if it was the real Uncle Fester or not?" Why? Let's put it this way: My parents were concerned about my obsessions in general. They-- especially my mother-- would have been freaked out had I asked them 3 months or so after seeing The Addams Family whether or not it was the real Uncle Fester. And I'm not being paranoid. Even as a kid, I was fully aware that they thought there was something psychologically wrong with me. Years later, Dad may have thought that my asking the question was a non-issue, but I guarantee in the context of my 11-year-old self he would have wondered why I needed to ask that question.

Well, that's coming out, Aspie style. I suspect these stories are more common than one would think. Anybody who has similar anecdotes, please tell them!

P.S. I have since obtained from eBay a tape of the soundtrack from The Russians are Coming! The Russians are Coming! My parents are not only aware that I have it but that I also imported it into my computer so I can listen to it on my iPod.

...It's Just Common Sense!

One quirk of mine is that I sometimes latch on to memorable lines in movies or music and use them to illustrate frustrating aspects of my life (or life in general). For example, one time when I seriously regretted something, I cynically said, quoting Doc Brown in Back to the Future Part II: "The only way to repair the present is in the past." Another time in the late '90s (when I was in high school), I was waiting obsessively for a reply to an email about something that was really important to me from a friend living overseas. Quoting the song Endless Night from the Broadway version of The Lion King, I commented, "One word, just a word will do to end this nightmare." "They don't have meetings about rainbows," from The Sixth Sense, is a quote I've employed numerous times to illustrate why my deranged drawings and stories drew "concern" from adults while most kids' drawings did not.

Lately, a quote that has been floating around in my mind comes from You Don't Know Jack, the HBO biopic about Dr. Jack Kevorkian. Okay, I know I have mentioned him a lot on this blog, but I am an Aspie, am I not? Anyway, the quote comes from a scene in which Dr. Kevorkian wins in court after being tried (again) for murder. A reporter asks Kevorkian how it feels to be victorious. He replies, "Victorious? I never feel victorious. I just go ahead and do what I do. This isn't a victory to me; it [the right to die]'s just common sense!" Lately, I've found myself using a modified version of that quote, usually in the form of, "This isn't a brilliant insight; it's just common sense!" I find myself saying it after I point out to friends and family what I think ought to be common sense in understanding people with Asperger's Syndrome, or just people in general (quirky or not). And just in case people assume that I'm making this assertion with 20/20 hindsight, ALL of the following examples were based on situations I analyzed as a kid, in some cases as young as eleven:

• When I was eleven, I was diagnosed with scoliosis. I remember the doctor being cold and clinical and that this poor bedside manner made me cry. What I don't remember was that he said that I had a "deformity." Apparently that was "the end" for me. I don't remember it, but I'm sure it happened. My mother seemed to think that my reaction was a bit on the hypersensitive side. Well, let me say this. If you're an eleven-year-old kid who already feels like a freak and next you are told you have a deformity, how could you possibly let that roll off your back? When do you hear the word "deformity?" In medical shows about conjoined twins, or about people with extra fingers or missing limbs, what is colloquially known as a freak. A child who already feels like a freak getting upset about being told she has a deformity? How can that be surprising? This isn't a brilliant insight; it's just common sense!
• My mother and grandmother often reacted to my off-color jokes and even my drawings by telling me that such things weren't ladylike. After a while, I began confiding in my cousin (with whom I'm close) that I hated being a girl.By the time I was twelve, I analyzed this and saw very clearly how absurd it was that a child's genitals, which she does not ask for, apparently ought to determine her behavior instead of her brain. This isn't a brilliant insight; it's just common sense!
• My parents told me that I wouldn't be bullied as much and would have more friends if I only dressed and acted more feminine. I thought this was absurd, not just because such fakery would have made me uncomfortable but also because such friendships would have been phony. At age fifteen I saw this with great clarity. This isn't a brilliant insight; it's just common sense!
• I hugged the dog and told her that I loved her but I never behaved this way around other people. My mom thought it was odd and was concerned. My dad commented, "I don't see what's so hard to understand. The dog's soft, furry, and cute, and people aren't." This isn't a brilliant insight; it's just common sense!
• I ignored my shrink, Dr. Klein, at the synagogue because I was worried that if I said, "hello" to him, other kids would know I was in psychotherapy, which was taboo in the early '90s. Dr. Klein often expressed bewilderment at this behavior, as if it were so unusual (I have told my friends this story, and they said they probably would have done the same thing when they were kids). A kid feels like a freak, and the last thing she wants is for her peers to know she's seeing a shrink. This isn't a brilliant insight; it's just common sense!
• At age fifteen I saw the hypocrisy of my being sent to guidance for "help" after kids bullied me relentlessly. Kids who cannot stop themselves from bullying others are not sent to guidance. Why not? Bullying is a destructive behavior. Shouldn't the teachers be concerned? This isn't a brilliant insight; it's just common sense!
• I drew very deranged drawings in early adolescence (as alluded to in my "They don't have meetings about rainbows," remark). My dad was concerned; Mom was freaked out. Kids who draw rainbows won't draw the concern of their parents, but they also generally aren't nearly as creative as I was. I understood this to be the case by the time I was about thirteen. This isn't a brilliant insight; it's just common sense!
• My parents couldn't understand why I got so upset when they offered me "advice" after I came home from school. Well, think about it. I spent seven hours in school being criticized only to be criticized again when I got home. The fact that my parents' motives were different from those of my peers is irrelevant. At age fifteen I understood that this was why "advice" was upsetting to me. This isn't a brillant insight; it's just common sense!
• The "advice" my parents gave me was painful to hear because it often started with phrases like, "If you would just..." I stopped telling them about the bullying in school and did my best to pretend that everything was okay. They couldn't understand why I wouldn't come to them any longer. I think it's pretty obvious that I didn't need to hear yet another round of criticisms. This isn't a brilliant insight; it's just common sense!
• Everybody told me to "just ignore" the bullies, even when physical violence-- such as throwing clay-- was involved. Nobody would tell an adult to "just ignore" someone throwing things at her as she walked down the street each day. It would be called assault. I knew that ignoring wouldn't work because it would just make kids try that much harder to get a rise out of me. Only now is the conventional wisdom of "just ignore them" being overturned. Really? How could anybody think that this is an effective way to deal with bullies? This isn't a brilliant insight; it's just common sense!

Parents, caregivers, teachers, friends, etc. of Aspies... please use your common sense!

"Asperger's and Death Part II" or "Confronting Your Own Discomfort"

Due to the popularity of my "Asperger's and Death" (it gets the most hits besides the intro page), I am going to address death again, and this time by talking about a famous person.


Dr. Jack Kevorkian.


Yes, Dr. Kevorkian, infamously known as Dr. Death for his in-your-face advocacy of voluntary euthanasia as an option for suffering, terminally ill patients. If anybody has ever watched interviews with him or seen his biopic, You Don't Know Jack, you know that he is a very odd, intense, and hyperfocused man. 


Could he have Asperger's syndrome?


Obviously, I don't know as I've never even met him. But let's take a look about what we know about him from television. I won't lie-- I find him brash and tactless in some of his interviews. I don't always agree with what he says either. For the most part, however, I think he is one of the most brilliant thinkers of the past hundred years, has a lot of good things to say, and is tragically misunderstood because his fascination with death is considered taboo.


Dr. Kevorkian rightly points out that many people are ludicrously uncomfortable with the subject of death, be it in the context of his euthanasia advocacy, his wonderfully disturbing paintings, or the fact that as a young man he did a research project in which he learned that he could determine the moment of death by looking into a patient's eyes and observing the changes.  


Kevorkian has many interests- art, music, and so forth- but he also seems to be very hyperfocused on death. This, combined with his intense facial expressions, mannerisms, remarkable talents (engineering, art, music, foreign language, and, of course, medicine) difficulty connecting with people during his teenage years, and according to friends, a minimal social life and lack of common sense, makes me think he may have Asperger's syndrome.  Many parents and friends of people with AS seem to experience inordinate discomfort about an AS person's obsession, even if with something as benign as trains. Why? I guess because they're not used to it. What happens, then, when that topic is death? 


When I first learned about Kevorkian's eye study, I was intrigued. Then I felt guilty, like I was "supposed to" cringe because if I reacted otherwise it meant something was wrong with me. The problem is that people think that if you're fascinated with death then you may be someone who wants to kill people. This is nonsense. If someone is fascinated with indigestion, does that mean that he cheers for joy when someone pukes on the floor? Being fascinated with the PROCESS of death can easily be completely divorced from the emotional reaction to the loss of a friend, family member, or even a perfect stranger. 


I confess to having a slight fascination with death, but I'm also fascinated with a lot of natural and medical processes. In my first "Asperger's and Death" post, I confessed that when a friend died I not only cried but also researched the decomposition process. Yes, it was my way of dealing with this tragedy, but I would be lying if I said there wasn't a bit of scientific curiosity involved too. What's wrong with that? Guess what? Dr. Kevorkian confessed to crying at some of his patients' assisted suicides which he otherwise approached in a nonemotional manner. 


How many people out there have a fascination with death and are afraid to admit it? Am I more honest about it because I have Asperger's syndrome? Is Dr. Kevorkian? Or are people like us the exceptions, not the rule? I don't know. But I do know that neurotypical people often keep more secrets about "taboo" interests than those with AS because they're so worried about what everyone will think.


You may not agree with Kevorkian's stance on euthanasia, and that's okay. I completely understand that it's a difficult issue for many people (just so you know, he turned away about 97% of the patients who told him they wanted to die). However, I think what we may all be able to agree on is that he has raised consciousness by exposing the absurdity of taboos. Sometimes, probably more often than you think, responding to someone's concern about a friend or child's fascination with death ought to be an emphatic, "So what?" 


Indeed, sometimes it takes someone with Asperger's-- or, at least, someone a little odd-- to make us question our assumptions and the rationality behind our knee-jerk reactions. That opportunity is here now. 


Do it.

OCD vs. Obsessing

It seems to me that many people with Asperger's syndrome or who know somebody with Asperger's syndrome wonder if an Asperger's obsession is different from Obsessive-Compulsive Disorder (OCD). After all, both involve excessive thoughts/actions related to one thing! Is there a difference?


Yes.


In Tony Attwood's great book The Complete Guide to Asperger's syndrome, Attwood points out a very important difference. Someone who is obsessed with trains or the Harry Potter series, for example, is getting pleasure out of the obsession. He or she is learning more about trains, how they work, and perhaps even how to build one. He or she is losing himself or herself in the world of Harry Potter to escape the real world, which is just too damned confusing! 


Someone with OCD, on the other hand, might be constantly afraid of running someone over in a car or getting a terminal illness if he does not wash his hands for exactly three minutes and forty-two seconds. These obsessions cause fear and distress, not pleasure. 


Now that you understand the difference, let me emphasize emphatically to parents that trying to end your child's obsession with trains or Harry Potter is not an option. This obsession keeps your child going, keeps him happy in a frustrating world. You must ask yourself if the reason you want it to end is because you think the child will be happier or if it is just because you are tired of hearing about it all day. If it's the former, then it's time to rethink your perception of the situation. If it's the latter, the answer is to help your child pursue his or her obsession in a constructive way. Get your train-obsessed child a model train set to play with or even encourage him to build his own model train from scratch. 


Can OCD be concurrent with Asperger's syndrome? You betcha. Attwood points out that it is sometimes an effect of the Asperger's syndrome, rather than something completely separate. I certainly think that was the case with me for many many years. Because of repeated social failures, I lived with the chronic, obsessive fear that I would mess up socially. I obsessed over things like, "Is that a genuine smile, or is that person uncomfortable?" Or, "When I told that joke and he laughed, did he think it was funny or am I going to find out the next day how deeply offended he was and that he told everybody how uncomfortable I made him?" "When I tried to engage in that conversation, did I come across as trying too hard, or was I natural?" These weren't just passing worries. I often harped on them for weeks at a time! Really, how can someone with Asperger's syndrome (undiagnosed in my childhood, in my case) NOT develop OCD? 


The fact that I grew up into a healthy, well-adjusted adult is nothing short of amazing. I guess it's because of how I'm hardwired, for whatever reason, to bounce back from setbacks and try again. It was only up until about two years ago that I obsessed about these things on a regular basis. One step that I took to overcome it was realizing that everyone makes social mistakes and not every social mistake I make is unique to Asperger's syndrome. It was then, in fact, that I realized I probably would not be diagnosed with the condition anymore because I compensated for so much. The few social mistakes I make these days are minor ones, ones that anyone can make. 


If you have a child or a friend with Asperger's who makes an obvious social mistake, such as yelling in public, "You farted!" not knowing that this is rude, don't get so worked up. If you get worked up, I can all but guarantee your child or friend will be obsessing on this for a long time. "I screwed up again. I suck at life." and so forth. Sure, someone announcing your farts in public is embarrassing, but really, is it the end of the world? Just gently remind the person not to do it anymore. Sure, it's frustrating, but I guarantee it's more frustrating for the person with Asperger's syndrome not knowing instinctively what behaviors are "appropriate" and what aren't.