New Article Published in "Autism/Asperger's Digest"

My new article, "An Aspie's View of Death," has just been published in THE PRINT EDITION of Autism/Asperger's Digest. I just got my magazine on December 23rd. However, it may be a bit longer before the issue is released to the general public. Keep checking for updates here!: http://www.autismdigest.com/

How Fiction Reflects the Human Mind

This post isn't related to Asperger's Syndrome per se, but I think people with AS are more likely to identify with it.

Children's fiction is imaginative. The sky's the limit. Dinosaurs talk. Kids have super powers or can cast spells. Monsters are friends with children. And so forth. The scope of fiction narrows as you head into the intermediate and young adult section of bookstores and libraries. You won't see talking dinosaurs or friendly monsters, but a lot of imagination is still there, even in popular fiction. Harry Potter, need I say more? I actually really enjoy teen fiction. Even when a large focus of the story is centered on "high school drama," I've found that characters often have unique voices. Additionally, lots of teen fiction deals with issues such as challenging authority and "coming out of the closet." Sometimes these themes are presented in unique ways, such as in The Hunger Games.

Now walk into the adult section. Maybe I'm not looking hard enough or in the right places, but imagination seems mostly gone. So much adult fiction seems to be midlife drama, and very little of it has any kind of unique twist. As I stated, even "high school drama" books have a level of creativity. But seriously, it is so difficult to find an adult book that isn't about some woman having a mid-life crisis, or a man having an affair, or a woman feeling like dirt because she can't pop a baby out. Even in books advertised with unique storylines, these storylines take a backseat to mid-life drama. I am almost finished reading Mercy by Jodi Picoult. The book is allegedly about a mercy killing. However, the majority of it is about a man having an affair with another woman. False advertising! About 3/4 of this book would have to be cut if it were to be entirely about a mercy killing. If I read one more time about how Cam "pulls out of Mia at the last minute," and "spills," I'll mercy kill myself!

For this reason, I stick to YA fiction and the adult books I read are largely non-fiction.

To me, this progression of children's fiction to adult fiction represents the evolution of the neurotypical human mind. Children are largely imaginative. In the teenage years, some imagination is lost in favor of romantic relationships, but relationships are only one part of life. In adults, it's all about marriage and procreating. I know I'm making a generalization here, but that's how it seems, and fiction seems to represent this. We Aspies get tired of everything being about romance. We want books that make us think and that have a unique story from a unique perspective. Alas, publishers obviously realize that unless a story has at least a subplot with a romance in it, it won't sell. Adult fiction often has to be Adult fiction to sell.

"How About if I Set You Up With Someone?"

Whoops, over two months since my last post. Sorry about that!


Today I was thinking about when I was a teenager and told some of my friends from camp that I wasn't really interested in dating. Every once in a while, the question, "How about if I set you up with someone?" came up. Today, I might easily dismiss that question as a response to the possible confusion they might have felt knowing that I had a prolonged crush on one of our counselors from my first year there and yet wasn't interested in an actual date with somebody more "realistic." However, I encountered this same question from my "friends" (put in quotes because they were terrible at living up to the title) in middle school even before I got my first crush. In both cases, the question freaked me out. If you are a kid with Asperger's Syndrome and people keep offering to set you up with someone, what you hear is this, "It is not normal to not be interested in dating." Some people with AS are asexual. Some just rarely get interested in anybody and think it's silly to actively look for someone (as in my case). So everybody, please, stop asking us. If we want you to set us up with someone, we'll let you know! Promise!

I'm Honest and Your Baby is Ugly

Lately on Facebook I have seen babies, babies, babies, and more babies. As far as I'm concerned-- and at the risk of, perhaps, alienating half my audience-- newborn babies generally look the same and look ugly (And no, I was not exempt from this rule as an infant). Inevitably, when somebody posts a million pictures of his/her newborn on Facebook, a flurry of "He's so cute," or "She's perfect!" dominates the comments sections of these pictures. I seriously wonder how many people genuinely are honest when they post these comments. Maybe a few, maybe even most, but not all. In fact, it's largely a social grace, a lie-- and presumably the new parents know that they're merely hearing a social grace rather than an honest opinion-- and perhaps a form of reciprocal altruism that is prevalent in social species.


Don't let the title of the blog entry fool you-- I'm not going to write, "Your baby is ugly" when I see pictures of babies posted on Facebook. But I'm not going to tell a boldfaced lie and say that s/he's "perfect" or "cute." If I want to be supportive, I'll say things that I really mean, such as, "I know you'll be a good mom/dad." 


Quite frankly, routine social graces feel phony to me, and I hate small talk. Dr. Jack Kevorkian once commented that he disliked small talk and also said that he hated how people routinely lie to each other in ways that I just described; these complaints are common among people with Asperger's syndrome which is one of many reasons why I think Dr. Kevorkian had AS. Call me cold, but when I go to work and bump into someone I barely know, I don't care how they are. No, that doesn't  mean I wish them ill, but I am really ambivalent to how they're doing, and I think if people were more honest with themselves they would agree. If somebody I barely know asks me how I am, I say, "Hey, what's going on?" That more casual greeting feels less phony to me than, "How are you?" At a job interview, I do say, "How are you?" because, unfortunately, successful job interviews are laced with phoniness. 


Is it cold for me to say that I am ambivalent that a casual acquaintance's mother is in the hospital? Here, I do conform to this social grace by saying, "Is she going to be okay?" because it is a profound situation, but I forget about it two seconds later. Does that sound insensitive?


It occurred to me recently that if I managed to do something to change the world for the better, ultimately my happiness about this would be in sheer pride more than, "I'm glad that other people are doing better," or "I'm glad that they are suffering less." Although I would be glad about these things, ultimately it would be a real boost for my ego. What about that? Does that sound selfish? I'm reminded of another Dr. Kevorkian moment. In 1998, when Dr. Kevorkian was on 60 Minutes after he injected one of his patients directly, he told the host, Mike Wallace, "I'm fighting for me, Mike. Me. This is a right I want. I'm 71... I'll be 71. You don't know what'll happen when you get older. I may end up terribly suffering. I want some colleague to be free to come help me [to die] when I say the time has come. That's why I'm fighting, for me. Now that sounds selfish. And if it helps everybody else, so be it." Mike Wallace, and many other interviewers, also said that when they talked to Kevorkian privately, they found him to be a very compassionate man. So why would he say something brazen like that if he didn't care about his patients? Obviously I can't get inside his mind, but I think in those four sentences he summed up what I'm saying here-- You may care about other people, but in the end you're the person you care about the most. He cared about his patients, but ultimately he wanted the right to die for himself. I think he was just more honest about his motives than most people in his situation would be.


Reciprocal altruism is, I think, why we pretend to be incredibly upset that the mother of somebody who we barely know is in the hospital or that we think somebody's ugly baby is cute. Yes, caring about the person, even to a minimal extent (depending on your relationship with them) may be part of it, but in the end it's about you. If you pretend to be more upset than you are about an acquaintance's mother being in the hospital, that person will like you better and be more likely to help you if you need it. Same thing if you pretend to think somebody's ugly baby is cute. 


And how many of you who cry at funerals really do it because you feel badly for the person rather than that you simply miss them? I think if people were more honest they would admit that they cry at funerals for themselves, not for the deceased. 


I think people with Asperger's are just more honest about their motives and how they really feel and are more aware of it because these social graces were not something that they acquired unconsciously but something that had to be taught to them.


There is no such thing as true altruism. 

Returning to My Roots

Last week, I returned to Camp Negev (not its real name), the secular Jewish summer overnight camp that I went to from 1995-1998. It was their second annual Alumni Day, in which Negev campers from years past could return and reunite with friends for a few hours.


Nobody from my age group showed up. In fact, I think a total of two campers from the 1990s, besides me, who showed up, and I wasn't close with either of them (we were positive acquaintances, I'd say). But that's okay. It was still good to see them. It was just good to see familiar-- and not so familiar-- Negev faces. To understand why I was okay with showing up and not reuniting with anybody I had ever been close to, one has to understand my experience at Camp Negev and what a unique place it was.


Camp Negev changed my life. I was a few months shy of 15 when I started attending in the summer of '95. I had never been to overnight camp before, and all life had taught me (mostly in school) was that I could expect interaction with my peers to be one humiliation after another. I expected that to happen at Negev. I expected the girls to put on makeup and talk nonstop about Cute Boys and make fun of me. If I expected this, why did I go to Negev? Because my older brother had gone (from '91-'93) and loved it. I had outgrown my day camp and was too old to return as a camper. 


When I first came to Negev, I was paranoid. I was scared that the slightest infringement on my part would invite humiliation. I remember being terrified when I randomly announced one day that the year was exactly half over to everybody in my cabin; they responded by giggling. I see in retrospect that they giggled because it was such a random comment. They probably forgot about it five minutes later and it never came up again. At school, a comment like that generally invited months of humiliation and became something of which I would never hear the end. I cried nearly every day for the first couple weeks at camp out of stress of trying to navigate the social world. Finally, in the middle of the third week of camp, one of my counselors, Jonas (not his real name) reached out to me and became my friend and mentor. He helped me to relax and make friends. Within three days or so of beginning to get to know him, I begged my parents to let me stay second session-- and they did. And the other kids in my group were happy about this. This kind of reaction was new to me. 


I stayed all 7 weeks in the summer of '95 and, at the time, it was the best summer of my life. Jonas helped me through high school, emotionally (despite living hundreds of miles away). I haven't seen him in about 10 years and we don't talk much anymore, but I know I will always love and respect him for what he did. I don't know who I would be today if not for him. Needless to say, I did return in the summer of 1996 (which was the best summer of my life. Period.), went on the camp's Israel trip in 1997, and came back as a C.I.T. in 1998. What I found to be unique about Negev was how interesting the people were to talk to even if I barely knew them. Most of them were intelligent and had something interesting to say. Some of my fondest memories include the deep discussions-- that sometimes lasted until 3 AM-- with people, some with whom I was close, and some with whom I barely knew. It was just that kind of place. In fact, it's really the first time I can recall actually engaging in a true conversation with anyone outside of my family! Plus, its small environment (usually about 150 campers) made it more comfortable for me. Did I have social problems there? Sure, but so does every Aspie, no matter how comfortable the environment (and this was the first place I truly felt comfortable). I can tell you right now, however, that my social skills improved dramatically from going to Negev. 


So back to the reunion. Yes, last Sunday I went to the Alumni Day. I enjoyed just watching the kids experience the absolute freedom that camp offered, the acceptance of differences in place where there is a strong emphasis on social justice. I talked to some of the counselors, who seemed interesting. I even found out there are some kids with Asperger's syndrome, and education about AS was delivered to the counselors during orientation. 


So that was Negev. My roots. To which I returned for a few short hours.

You Can't Live Like That!

One of my biggest regrets of my life was the fact that I mostly kept to myself in high school. With undiagnosed Asperger's, I was too scared of screwing up socially and making myself a target and going through another living hell of bullying. So I kept quiet and barely spoke to people. I didn't open up. There were a few people I spoke to during homeroom and art class and gym, and even though I knew that we could probably be good friends, I never took the chance of letting them get to know me. I blended into the background while everyone else had, as the cliché goes, the best years of their lives. I wasn't miserable, but I wasn't particularly happy either.


You can't live like that. 


We need to create a world that is more understanding to people with Asperger's syndrome or their teenage and adult years will be, at best, limbo or, at worst, a living hell.

People with Asperger's Syndrome Have True Freedom

People with Asperger's Syndrome have true freedom.


True freedom doesn't come in the form of superficial, legislated rights, like the right to vote, the right to assembly, the right to drink...


No, true freedom comes in the form of abstract rights that have never really been spelled out. These rights include challenging gender expectations in EVERY form, having aesthetic tastes and a sense of humor that don't fit the mold, and overall questioning and challenging social conventions that everybody else takes for granted.


Aspies challenge social conventions and expectations practically from the day they can speak-- at least, I did. I resisted a lot of attempts by my parents and Society to try to conform me to them. I eventually picked up the ones that made sense to me and rejected the ones that didn't. I am freer to reject social expectations than most people because I am not affected by peer pressure and don't care what most people think. I would rather have a few friends who like me for who I am and who understand me than dozens of "friends" who "accept" me once I conform to their standards. These challenges we make to Society-- especially when growing up in Public School Society-- come with great risk. We get rejected, harassed, ostracized and generally burned-- badly. But despite all that, we keep doing what we want because we are free in the truest sense of the word.

She's Going to Be Fine!

On Wednesday I met up with a mother I had interviewed (for the Asperger's book I'm writing) several months ago and her 18-year-old daughter. They flew in from Tennessee. We had a late lunch at the Tick Tock Diner near Penn Station. The girl is not ready to drive, and not ready to go to college yet. But I know she's going to be fine. She's very intelligent, very high-functioning, and I think just a "late-bloomer." When will she be ready to begin taking adult responsibilities? I don't know. If I had to make a guess, five years. She's not going to need "supported living." All she needs is more time to reach adulthood.


Anyway, I had a good time with mother and daughter, and we hung out in the restaurant for over two hours. We laughed a lot-- the daughter has the same deranged sense of humor I do-- talked about issues with Asperger's, and more. I listened to the daughter's interest in Nintendo and Pokémon, and they listened to my theory about why I think the late Dr. Jack Kevorkian had Asperger's syndrome. And we laughed. And laughed. And laughed some more. And that's important. Not all conversations have to be serious, and not all (or even any) have to be about "social" topics. What matters is the participants have a good time. 


The daughter is going to be fine. Just give her time.

Dreams that Would Make Salvador Dali Cringe

Sorry, it's been too long since I've done one of these, but it's been hectic with losing my job and trying to find another... excuses, excuses. Anyway, I will continue to put up new blog posts every Friday from now on...


I don't know if this is an Asperger's thing or just a "creative" thing, but I have weird dreams, some that would make Salvador Dali cringe. I invite you to share yours. Here are a few classics:

• About a decade ago, I had a dream that I was getting my period and oranges came out instead of what you'd expect.
• When I was a teenager, I had a dream that Michael Jackson was robbing a Dunkin' Donuts at gunpoint. Frightened, I hid in the bathroom.
• I had a dream that my mother was laying spider eggs (fortunately, this was just one of those "I knew it was happening" dreams and was spared a visual representation of this). 
• My cat was cut into pieces and put in the refrigerator, but once I defrosted him I could reassemble him.
• I was consoling a crying Conan O'Brien because he didn't think he was funny. This is just weird since I never even watched his show.
• When I was in high school, I had a dream that a burglar was trying to rob my house. My father stopped him by strangling him with a Nintendo controller cord.
• My (late) dog needed a snout replacement. My father cut her snout off with a circular saw. There was no blood. Then he put a new snout on her.
• I had a dream a few years ago about scooping Woody Allen's brains out with an ice cream scoop.
• A few years ago (I think shortly after the Terri Schiavo case, though it might have been much later than that), I had a dream that someone survived on life-support for 200 years and looked like they should be dead. Social commentary in my dreams! Ha!
• When I was 13, I had a dream that an old man with no arms and no legs was chasing me and throwing rocks at me.

And my latest: Last night, I had a dream that it was Thanksgiving. My mother was debating over whether to make lamb or ox. The lamb had stuck its snout in poop, and so it was going to taste like poop. But according to my mom, that was part of what made it a delicacy! Then she yanked the tongue out of the lamb and said we could eat that too. Disgusted, I said, "Let's just have ox!"


Let's hear your weird dreams!


Julie

"I Admire You For Being Able to Live Alone!"

Sorry for the lag in posting. Life has been pretty stressful. I'm getting laid off and the blog just hasn't been my first priority lately...


Anyway, I find it amusing when I tell people that the only roommate I have is my cat and they say that they admire me for being able to live alone. There they have made an assumption: that the norm is to want to have a roommate and that I am "strong" for being able to live alone. I think this assumption may be especially true with women. Even if just subconsciously, we think of men who live alone as "bachelors" and women who live alone as "lonely." 


Unless I were in a situation in which I had a boyfriend, I cannot see myself living in any way but alone. At summer camp group living was fun, but that's another situation entirely. When living with a roommate in an apartment, both parties inevitably have their own habits that annoy the other person. When I live alone, I can watch Back to the Future over and over. I can say stupid things to my cat. True, I can get an apartment in which I have my own room and nobody can get annoyed by my odd habits, but sharing a bathroom is never fun. It's through the bathroom that you learn how even people you like very much can gross you out.


So what it comes down to is this: Like many Aspies, it would only make sense to admire me for having a roommate, not living alone. 

Asperger's Crushes: When the Brain Gets Hijacked by Neuro-terrorists

When I was just a few months away from my fourteenth birthday, I still hadn't yet experienced my first crush. Quite frankly, I didn't want to even though it was something everybody expected of me. My mother nagged me about it relentlessly. I watched as girls, some of whom used to be fun to hang out with, seemingly dedicated their lives to snaring Cute Boys; it truly bordered on obsession. I had a history of stepping well over the border of obsession in terms of movies and television shows. Given how perversely aware I was of my obsessive nature, I was certain that once I got my first crush it would not border on obsession but would fall well over the border.


I was right. 


I had no idea how right I was. I got my first crush the following summer on one of my counselors, Jonas (not his real name), at overnight camp. It was my first year at camp, and Jonas reached out to me when he saw that I was struggling. I had a history of being bullied, so naturally I was paranoid at camp. If not for Jonas, I doubt I would have returned the following summer, let alone looked back at my camp years as among the best of my life. Jonas knew I had a crush on him and, fortunately, he was very understanding and patient about it and remained my friend and mentor for many years.


After Jonas, I developed crushes on a total of 8 other people. I am not attracted to people easily, but when I am it's overwhelming. With the exception of one person, Hans (not his real name), a friend from Germany from whom I got my first kiss, nobody reciprocated. They were generally either taken, older, or both. Sometimes my relationships with these people started out as friendships or positive acquaintanceships only to end in disaster with the person shutting me out entirely. I always assumed the person in question was not interested so I did my best to hide my feelings. I could not do it. I tried my best to figure out how to keep a low profile while still remaining friends/positive acquaintances with these people.


Sure, and maybe while I was at it I could enjoy the smell of a bacon cheeseburger without trying to eat it. 


While I have conquered many aspects of Asperger's syndrome, this is one that I still struggle with, probably because I'm not attracted to people easily and thus haven't had much experience controlling it. Like many people with AS, I always became intense with the person on whom I had a crush without meaning to. Once, I was even accused of stalking. This accusation is apparently very common for people with AS.


Why do we get obsessive crushes? Why is it that people with strong feelings can generally keep theirs hidden and we can't? My guess is this: We tend to have tunnel vision. We get hyperfocused. Getting hyperfocused doesn't end with a hobby or favorite movie. It manifests itself with people we find attractive. I read that the same chemicals in the brain that are involved in drug addiction manifest in the beginning stages of a person experiencing an infatuation. This is true with a person with a neurotypical brain. What, then, does a brain scan reveal in an Aspie who has a crush? 


I don't know. I don't have answers or advice to other Aspies who have struggled with this as much as I have. As far as I'm concerned, my otherwise rational brain gets hijacked by neuro-terrorists. But I want you to know something that I didn't until very recently:


You are not alone. 

List Your Obsessions!

Since the past couple posts have been a bit dark, I figured this week's post ought to have more levity. I invite you to list the things you've been obsessed with over the years. Now, one important thing to realize is that everybody defines "obsession" differently. I personally have a very extreme definition of what constitutes obsession. By the way I define it, I stopped getting obsessed with things in the summer of 1995 when I was about to turn fifteen. After that, I got obsessed with people on whom I had a crush (that will be the topic of next week's post). That can be a royal pain, so let's focus on the obsessions that have been mostly fun and harmless.


Here is my list!

• Fall 1986- late 1987 (age 6-7): Sesame Street
• Fall 1986- late 1988 (age 6-8): Tom & Jerry
• Winter 1986 (age 6): Santa Claus: The Movie and anything related to Santa Claus.
• Late 1988- Late 1989 (age 8-9): DuckTales
• Late 1989- Spring 1991 (age 9-10): Back to the Future trilogy
• Spring-Fall 1991 (age 10): The Simpsons
• Fall 1991-Summer 1993 (age 11-12): The Addams Family movie
• Summer 1993-Summer 1995 (age 12-14): The Russians are Coming! The Russians Are Coming!/Anything related to actor Alan Arkin
• Summer 1994 (age 13): The Rocketeer (another movie with Alan Arkin)

...I Wake Up Screaming

These days I am generally self-assured and well-adjusted. But it is not as if I've completely forgotten about my difficult past. Most nights are uneventful and I sleep well, but sometimes I have intense dreams about my past and I wake up screaming.

• Friends at school ditch me-- I wake up screaming.
• Kids at school humiliate me-- I wake up screaming.
• I'm infuriated because I don't understand the plot of a movie and everyone else does effortlessly-- I wake up screaming.
• My parents call me immature-- I wake up screaming.
• My parents tell me I don't dress or act feminine enough-- I wake up screaming.
• My parents tell me I'm annoying-- I wake up screaming.
• My parents tell me I make people uncomfortable-- I wake up screaming.
• My parents holler at me for drawing deranged and violent Addams Family cartoons and tell me I'm not allowed to draw them again-- I wake up screaming.
• My parents tell me I'm too immature to have friends that are 5 years older-- I wake up screaming.
• My parents grill me about why I'm not interested in dating-- I wake up screaming.

The recalled incidents involving my parents give me more frequent night terrors with greater intensity than ones involving kids at school. 


Parents, please, I know you mean well, but be careful of what you say to your kids. I promise that your remarks, while in your mind are "constructive criticism," will fester in their minds for many years. 


And listen to what they have to say. You might learn something.

"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.

Define Maturity!

It is frustrating how often people with Asperger's syndrome are labeled "immature" because of their social difficulties. Throughout my childhood and much of my adulthood, my maturity was criticized by parents, teachers, and peers:

• Making a silly comment at an inappropriate moment: immature
• Not wanting to dress like the other girls: immature
• Preferring animated films to live-action films: immature
• Getting upset over something that wouldn't upset most people: immature
• Talking too much: immature

And so on. 


To be fair, I was still undiagnosed during my childhood, but these days many books for parents describe children with AS as immature.


Time for some consciousness raising: Imagine if a child with Down syndrome were labeled immature for having difficulties in reading and math. Imagine the uproar from their parents: "How dare they use that word to describe my child? He can't help it if he has problems in reading and math!"


Why, then, do we have this double standard in defining maturity? Simple: society, aware of it or not, puts a disproportionate amount of stock in social "maturity" over intellectual "maturity." We say that kids with Down syndrome are, to use a euphemism, "intellectually challenged." Or we say that they have learning problems. How often do you hear a person with AS being labelled socially challenged or socially delayed? How often, on the other hand, do you hear someone say that a kid with AS is "intellectually more mature" rather than "intellectually advanced?" Don't all speak at once.


For the same reason that it is offensive to call someone with Down syndrome (intellectually) immature, it is offensive to call someone with AS (socially/emotionally) immature. I think calling someone with AS "immature" is as loaded as calling someone with DS "stupid." These adjectives are harsh, blunt criticisms leveled at a person who has difficulties with certain skills that most people acquire naturally. It is detrimental to their self-esteem.


Why is the socially awkward teen with AS who locks himself in his room for hours and creates a new complex computer program labelled immature while a highly social teen with DS who is still struggling with basic math is not? Now, you know why. Think about it. 


And think about what you say.

Are You SURE You Have Asperger's Syndrome?

Being the highest of the high-functioning on the autism spectrum is a double-edged sword. On one hand, it's great that in adulthood that my symptoms are sub-clinical and I can finally relax and not worry that every little thing I do is going to set people off due to a miscommunication. I make friends with ease and I am very personable. On the other hand, because of these skills that I now have, lots of people who I meet for the first time don't believe me when I say that I have Asperger's syndrome. Yes, it's true that I diagnosed myself initially before seeking confirmation from a therapist, but I'm not the type of person that sees one little trait that vaguely fits my personality and makes a diagnosis. It is true, sometimes people do that. "Oh, I'm fascinated with numbers. I must have Asperger's syndrome," someone might say, not thinking about the label that they're misapplying to themselves. But I'm not like that.

People who knew me from summer camp or from school, with whom I reunite on Facebook, often say this when I tell them I have Asperger's syndrome: "That explains a lot." And it does! People who I'm just getting to know today can't see that I have it because I've compensated for most of the problems that come with it. Just because they can't see the struggles and the pain I endured while trying to navigate the social world throughout the vast majority of my life (a lot of it was trial and error) does not mean that these things didn't happen. Asperger's syndrome is the only logical explanation for the social problems I had throughout my childhood and part of my adulthood. Some people become sub-clinical in adulthood (AS advocate Michael John Carley comes to mind-- I used to go to his support group and I never would have guessed he has AS). A child may have a dyslexia that makes reading a headache, but upon adulthood that same person may read with near total fluency. On the other hand, some dyslexic people rely on audiobooks in adulthood. 

Like dyslexia, autism is a spectrum. And I think the highest functioning people have it the hardest growing up because they appear to be "normal." That is, "normal" kids who are stubborn, uncooperative, ill-mannered, rude, etc. When a child fits the stereotypical AS traits-- talking about trains, flapping hands, taking idiomatic expressions literally-- then people may see the AS more clearly and be more accommodating. Let's raise consciousness. For those of you who are the highest of the high-functioning, I'd like to hear from you.

Smiling

I think a lot of people with Asperger's syndrome have a similar story: they are walking down the street or through the hallways of school or work, deep in thought about something, and someone asks, "Are you okay?" or comments, "Don't look so sad!" It's frustrating, incredibly frustrating. It takes all my willpower to refrain from answering with a wise remark or from saying something nasty to them. 


This has been going on my entire life and while it doesn't bother me too much if people I know ask me what's wrong, it bothers me when total strangers ask me what's wrong or comment on the fact that I don't have a Cheshire Cat grin on my face. A couple months ago, I was heading back to work after my lunch break, and some random woman on the street said, "Aw, don't look so sad!" I just laughed it off but what I really wanted to say was, "And who are you? Do you know me? If something were wrong, do you honestly think that your comment would make me feel better?" 


I find myself wondering, too, if people notice more if a girl or woman doesn't smile. Females are expected to be highly social pack animals. I don't know if a study has been made about the frequency of females being reminded to smile, but I do know that a study has inversely linked testosterone levels to frequency of smiling. Males smile less frequently than women on average. That said, what do people think if they see a guy not smiling? Do they think he's just deep in thought? Does the phrase "still waters run deep" come to mind more readily when one sees a non-smiling guy than a non-smiling girl? It's worth thinking about as one of the many double-standards that apply to females vs. males with Asperger's syndrome, as many people with AS are not chronic smilers. 

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.

Sometimes a Cigar is Just a Cigar

Many therapists-- and people in general-- like to analyze things that that have no deep meaning when they don't understand them. I think part of the reason is that what they don't understand makes them uncomfortable. Whatever the case, sometimes a cigar is just a cigar, as Sigmund Freud (who I otherwise think was a bag of hot air) said.


Growing up with undiagnosed Asperger's syndrome, I encountered over-analysis from my first therapist, Dr. Klein, and sometimes my own parents, a lot. For example, I was never a huggy person, except with animals. Give me a dog or cat and I will hug it, kiss it, and tell it I love it. I very rarely hug other people. My mother struggled to figure out why I would shower the family dog with love and affection but would never hug even my own parents. I struggled, too, because I had enough insight to know that most people liked to hug and be hugged. I felt like there was something wrong with me. Finally, my father came up with a very simple answer: "I don't see what's not to understand. The dog is soft and furry. People are not." Isn't it funny how the most straightforward, simple answer is often the correct one?


Dr. Klein, my clueless therapist I saw when I was 11-14 years old, analyzed a lot of silly things. I often showed him a lot of drawings I did, and one day I brought one that I colored in. He said, "I've noticed that you're coloring in your drawings now. Why?" Why? I felt like it. Coloring is a labor-intensive process and isn't as much of a creative endeavor as actual drawing, so I rarely did it. But once in a while I felt like it and did it because it made my artwork look better. Why was this worth analyzing?


Around that time I was into The Addams Family type humor. I drew a lot of pictures and comics that rivaled the violence in Itchy and Scratchy on The Simpsons. Once again, my father saw it for what it was: I thought it was funny. But he was still a little concerned, mostly because I did it so often. My mother, on the other hand, was terrified. Dr. Klein? Well, he didn't act freaked out like my mother did but I could tell he was still shocked. He thought I was doing it to "blow off steam." Many people think that if a child draws violent pictures it means he or she wants to hurt people or is venting in some way. No. Not in my case. All of the characters that I drew in violent pictures were either characters out of The Addams Family or characters of my own creation: They were MADE UP. I never drew real people getting hurt. Besides, I just had a strange sense of humor. I still do. I like humor that deviates into the wicked and absurd: I'm a huge fan of South Park. 


Sometimes there are reasons to be concerned about somebody's behavior, sense of humor, and so forth and you may want to analyze. But bear in mind that sometimes, more often than you would think, a cigar is just a cigar.

Asperger's and Death

Death is not easy for anyone to accept. When a friend or family member dies, most people handle this devistation by crying or grieving in some other way and go to friends and family for support. Do people with Asperger's syndrome grieve differently? In an email exchange, famous Asperger's authority Tony Attwood told me that many people with Asperger's syndrome use knowledge and information to handle their grief rather than seeking affection from others. 


In Attwood's book The Complete Guide to Asperger's Syndrome, Attwood relates an incident in which a boy's father was away doing a photo shoot on a war. The father had been missing for a few days and everybody was worried. The boy kept asking his mother about what weapons each side of the war was using and how many people were dying. When his father did come back, the boy asked Dad how many photos he had taken of dead bodies. The boy's family thought he was unconcerned and didn't feel compassion, but this was how he handled the concerns he had about his father's life. Obviously, he wanted to get a clear picture of what was happening, possibly to assess the risk of death his father faced; he was not at all trivializing the situation.


I can understand this boy's perspective. Last week, I found out that a girl I met in 1997 on a summer teen group tour died in a tragic accident. I only saw her once since the trip, in 2007 when she was passing through NYC, we only occasionally kept in touch, and we weren't close. I did, however, grieve a little. I cried. I lamented about not having gotten to know her better because she seemed like a great person. On the trip, she had helped me at least once with social problems I was having.


I also found myself recreating the accident in my mind. I wondered what her last thoughts where and how quickly she died. I tried to picture exactly how the accident played out. I wondered what her body looked like. I even searched the Internet for information about how the decomposition process works. Why? This is not some perverse fascination with death. It is because I have such a hard time wrapping my head around how someone can be alive and happy one minute and essentially cease to exist the next. A once lively face is now just a piece of a decaying body. A once-thinking, intelligent brain is returning to the earth. It does not know it is dead because if it is not conscious, how can it know it? How does it feel to not be conscious? It doesn't. 


It is here that grieving meets scientific curiosity in trying to give closure. But of course this questioning won't give me closure. I know logically I just have to move on and accept that I'll probably never know the exact details of the accident and the aftermath.


Fortunately, I have enough insight not to talk about such things on my friend's Facebook memorial page or with her close friends. Not all people with Asperger's syndrome, however, know this. You may be shocked, for example, because your son seems to be trivializing his beloved grandpa's death. But it is very likely that this is not the case. It may be his way of seeking closure for a death that he is having a hard time coming to terms with. Talk to him. Try to understand why he is thinking this way. It may seem weird to you, but once you understand you might find yourself getting more insight into how his mind-- or your own-- works. 

The Politics of Fitting In

I was close to tears last year when I read a section of a book for parents of kids with Asperger's syndrome. This section advised parents to make sure their kids "blend in," reminding them that kids with AS are not affected by peer pressure. It went so far as to tell parents that a sixth grader won't stop watching Winnie the Pooh just because of his age, nor will he realize that kids don't bring umbrellas to school on a rainy day.


Before you start typing a response that begins with, "Well there is another side to this," I just want you to reread the above paragraph, replacing all instances of "Asperger's syndrome" and "AS" with "Down syndrome." Speechless, aren't you? I am sure you can imagine the uproar that would ensue if there were books that advised parents of kids with Down syndrome to "fit in" socially or academically. And why should kids with intellectual disabilities be exempt from this expectation? Because their IQs are below a certain level? Okay, if that's the case, then perhaps there should be an MQ-- maturity quotient test-- for kids with AS to take to excuse them. Oh, but wait. Kids with Down syndrome also have physical features that alert people of their disability, and kids with AS don't. Fine. Give kids with AS a T-shirt to wear that alerts others that they think differently and have different tastes.


No matter how you cut it, this pressure to make anybody-- whether or not they have a disability or anomaly-- is immoral. From my personal experience-- and from what other Aspies have told me-- all they ever wanted in life was to be accepted for who they were. By advising them to conform to what amounts to herd mentality, the authors of this book (and many others that give similar advice, especially to girls, by the way) are basically throwing up their hands and saying, "Okay, nobody is going to accept you for who you are, so you need to change who you are." Although my parents did not intend it, that was the message I got from them, loud and clear, when I was growing up with undiagnosed AS and pressured to "fit in." This further shattered my self-esteem, which was already severely damaged from bullying at school. I felt that I was being told to answer to the bullies. Besides, if a kid is told how important it is to fit in in silly ways-- like what movies to watch, what clothes to wear, and not to carry umbrellas-- why should this same person say no to cigarettes and drugs?


What we as a society need to do is raise consciousness and educate the world about Asperger's syndrome. If we don't, our schools will be run by bullies and so will the rest of society. Change starts with you, and it starts now.

The Road to (Self-) Diagnosis

Growing up in a small, homogeneous town in Pennsylvania, it was excruciatingly clear that I was different. I knew long before I started experiencing chronic teasing in second grade (which continued through ninth grade), long before other kids nicknamed me "Space Cadet" and "Alien." I knew it long before I began to sense that my parents thought there was something wrong with me, long before teachers and parents began calling my parents with "concerns." 


By fifth grade, I knew that I had ideas, perceptions, an imagination, and a sense of humor that often significantly deviated from what much of society expected. I also got inordinately obsessed with certain movies and television shows and I knew it was weird to do so. Like many people, I, too, thought that there was something wrong with me. I struggled to figure out why I was so different. But it was the early 1990s and I had never heard of the concept of someone's brain being hardwired differently, or even mental illness. In the '80s and '90s-- when I was growing up-- few people had. 


My parents first brought me to a psychologist in the middle of my fifth grade year. Dr. Klein (not his real name) told my parents and me what amounted to, "I don't know what to tell you. I've never seen anything like this before." I stopped seeing him after three years because it was clear that he wasn't helping and, although I liked him as a person, was notorious for analyzing things that had no deep meaning. 


The summer of 1998-- three years after I had last seen Dr. Klein-- was a major turning point in my life. The concept of people's brains being literally wired differently began to dawn on me, and it drastically influenced the way I understood myself as well as other people. I strongly suspected that my childhood and early adolescent obsessions with movies and television shows -- not to mention the obsessive crushes I found myself beginning to get as of late-- indicated Obsessive Compulsive Disorder (OCD). 


Unfortunately, despite my epiphany about OCD, I struggled with emotional frustration and meltdowns as well as major setbacks in social interactions. My summer camp-- the only place I had ever felt like I truly could be myself-- was not going to hire me as a first-year counselor in the summer of '99. With no friends at school-- I just couldn't connect with anybody-- I had no one to turn to, no backup plan.


In the fall of 1998, for the first time in three years, I was back in a therapist's office. Dr. Fried (again, a pseudonym), was a much, much better therapist than Dr. Klein. After the first or second session, he spotted a common denominator in my personality. "You're a very intense person," he said. Indeed, I am! I experience life in general intensely: favorite movies, friendships, crushes, and worrying. Based primarily on the obsessive worrying, he agreed with my theory that I had OCD and diagnosed me with the condition.  I only saw Dr. Fried for about six months-- college was just around the corner and I would be moving to Brooklyn, NY-- but he helped immensely. I moved to Brooklyn in an optimistic state of mind. 


In my junior year of college, however, my problems began to resurface. I continued to have social problems, not so much with other students (I made some good friends), but with teachers. I was in art school and many of the teachers fit the stereotype of the temperamental, self-righteous, imbalanced, and just plain nasty artists. Despite the OCD label, which was initially empowering, I began to suspect that OCD didn't paint an entire picture. I knew, somehow, that it just wasn't quite it. There were so many things-- like my problems reading social cues-- that just didn't add up.


In 2002, towards the end of my junior year of college-- and one of the worst years of my life-- I came across an article in Time about autism. As far as I knew, autistic people were "those people who don't talk." But then I saw a short description of Asperger's syndrome (AS) in a side bar. Obsessive interests. Difficulty interpreting nonverbal social cues. Awkward motor skills. I ran some searches on the Internet for AS and found out more. Obsessive, obsessive, obsessive. Difficulty making and keeping friends. Experiences the world differently. Misinterprets situations. And so forth.


The pieces fell abruptly into place.


Over the next year, I bought a number of books on AS and essentially diagnosed myself; a psychiatrist confirmed my diagnosis in the spring of 2003. After years of poking around in the dark and only finding partial answers, a complete, coherent picture was finally formed. AS was added to the DSM in 1994, but the vast majority of professionals weren't aware of it until a little after the turn of the century. 


At long last, I had an answer. How did I feel then? How do I feel now? As I said, 2002 was one of the worst years of my life. 2003 was the absolute worst. Whereas the discovery would have come as a relief in high school, a time when I was more optimistic despite my insecurities, I felt embittered and frightened. How could I possibly hold a job after graduating if I had this problem? Would I have to live in a group home or on SSI? Looking at my turbulent childhood and what looked like was going to be a difficult adulthood, I felt that nature had played a sick joke on me. 


Things have changed since then, and I'm a happy, well-adjusted adult, am relieved to have the AS label, and I am able to interact socially as well as the next person. Most people are amazed when I tell them I have AS. And yes, I do have a job. I suppose part of me feels cheated because I suffered for much of my childhood and my early adulthood, just by the sheer accident of being born in 1980 instead of 1990. But I know I should look on the bright side-- at least I wasn't born in 1950. People didn't go to therapy in those days; many people thought it meant you were crazy and should be locked in a padded cell. Sometimes I wonder if that would have been my fate, with the emotional meltdowns that I had from experiencing a world that made little sense to me.


And while we're on that note, it's important for society to understand something important about AS-- it isn't a mental illness and there isn't necessarily anything psychologically wrong with the person who has it; his or her neurology is just different. What Aspies need is not to be cured anymore than a gay person needs to be turned straight. After all, if we cured AS, we would have no Albert Einsteins or Temple Grandins. Aspies-- like gays-- need understanding and support and to have their strengths nurtured, not their weaknesses emphasized. I feel privileged to at last be entering an era where this attitude is starting to become more prevalent. 

Articles I have had published on Asperger's Syndrome

This technically doesn't count as this week's post (that comes Wednesday) but for anybody who is interested, I got two articles published in the online edition of Autism-Asperger's Digest last year.


So here you go, something to chew on until Wednesday! :)


You will need Adobe Acrobat Reader to see these articles. It's free.


Characterizing Asperger's Syndrome 
Isn't it hard when children with AS cannot relate to anybody in real life? Sometimes reading about or watching a fictional character can be therapeutic.


Late Bloomers: Girls in Adolescence
While a lot of neurotypical girls are throwing themselves head-first into adolescence and going gaga over Cute Boys, girls with AS would rather continue their childhood pursuits and feel left behind. What's an Aspie to do?

Welcome to Eccentrics United!

Eccentrics United: An Asperger’s Syndrome Blog

            Welcome to Eccentrics United. This is a blog for people with Asperger’s Syndrome, their parents, and their friends. My name is Julie and I am a 30-year-old woman on a lifelong journey to understand herself. When I was growing up in the ‘80s and ‘90s, I dealt with a society that I did not understand and one that understood me even less. I had a difficult time making and keeping friends and got inordinately obsessed with certain movies and television shows. I knew this constellation of quirks was unusual, and during my childhood it was a condition with no name.

            Today, I know that the condition is called Asperger’s Syndrome. I first learned about it in 2002 from reading a sidebar in an issue of Time whose cover story was about autism. After a year of further research, I diagnosed myself (a psychiatrist later confirmed my self-diagnosis). At last, I had some answers to the questions that had been eating away at me for so many years. Everything finally started to make sense.

            Through Eccentrics United, I hope to celebrate individuality and eccentricity and give others insight into Asperger’s Syndrome. I encourage you to share your stories about yourselves or a friend or family member with AS. I am also happy to answer any questions you may have about this perplexing condition. I am not a psychologist by any means, but is it not helpful to get advice and insight from someone who actually has AS rather than who has just studied it?

            On Eccentrics United, I address a manifestation of Asperger’s that has only recently been documented. Primarily affecting females, people with this type of AS often live in a fantasy world. They become obsessed with movies, literature, music, theater, or animals rather than the stereotypical Asperger’s obsessions such as computers, trains, or math. They are often creative artists, writers, actors, or musicians. They would love to be a part of fantasy worlds such as Harry Potter or Lord of the Rings. This is the type of AS that I have and thus understand the best.

I hope you find this blog useful. Check for updates every Friday.