How IQ Tests Hurt Kids with Asperger's Syndrome

Sometimes I really hate IQ tests. There is a good reason why kids typically are not allowed to see their results. A high score can go to their head, and a low score can make them feel like they've been given a life sentence. 

Before I continue, let me clarify something: I'm not one of those people who say that IQ tests are meaningless. They're not. Steven Pinker said it best in his book The Blank Slate:

People who say that IQ is meaningless will quickly invoke it when the discussion turns to executing a murderer with an IQ of 64, removing lead paint that lowers a child’s IQ by five points, or the presidential qualifications of George W. Bush.

If someone gets a high score on an IQ test, it is most likely accurate. You can't cheat on an IQ test and you can't fake your way through it. On the other hand, if you get a low score, the test might not be telling the entire story and can even be misleading. You know what happens: a child gets a low score on either the verbal or non-verbal sections of an IQ test (or both), their ass gets slapped with a label, and their parents told the kid has a learning disability. Good thing the kid doesn't overhear this conversation because, like I said, it can feel like a life-sentence. And it really can be tough for kids with Asperger's Syndrome because it is very common for them to score very high on the verbal portion but average or lower on the non-verbal portion (or vice-versa).

I first saw my IQ scores when I was in 5th grade (age 11). At the end of school one day, I was called to the principal's office where I was handed a thick envelope, which I was told to give to my parents. "Your parents are expecting this," said the principal. Oh, how extraordinarily naïve to think that you can give an 11-year-old kid a thick envelope to give to their parents and expect them not to intercept it. It's an especially naïve expectation if the kid knows that they're different and also knows that a lot of people, including their parents, think they're something wrong with them. And especially if the kid knows that their mother is planning on sending them to a psychologist. 

So, yes, of course I opened the envelope the minute I got home. It was a psychological evaluation from when I was in 2nd grade (age 8 years, 6 months), with an IQ test included. Reading the psychological evaluation-- which in retrospect described all the signs of the then-unheard-of Asperger's Syndrome-- was traumatic, but that's another blog post altogether. I saw the IQ scores-- my verbal was measured at 136, but it was my non-verbal of 102 that upset me. Hell, it wasn't even the number that upset me. It was declarations like this:

On an additional measure of visual motor functioning, Julie was asked to copy geometric designs. Again her weakness in the non-verbal area was evident; Julie scored from 6 months to 1 year behind her age mates.    

Okay, seriously? My visual motor skills were 6 months to a year behind my peers? I was drawing better than most of my peers. In fact, kids often came to me to ask me to draw things for them! Do you think someone with poor visual-motor skills could have drawn this at age 8 years 6 months?:

Yes, let's talk about my spatial reasoning abilities here. While it's true that I was behind in learning to tie my shoes and learning gross motor skills like learning to ride a bike (I didn't learn the former until age 7 and the latter until age 9), my visual motor skills were clearly superior in other ways. Look at this drawing. This isn't just a straight-up-and-down character that most kids that age draw. This character has one leg in front of the other, executing a pose that has some attitude in it. You can tell what he's trying to convey based on the hand on his hip, the wink in his eye, the crooked grin, and one leg in front of the other. I had a natural understanding at that age that drawings are the most effective when they give the illusion of being in 3 dimensions!

As for the shapes that I was asked to copy? I really don't know. Chances are I didn't care because I thought they were boring. I didn't know I was being tested, and it's possible I just wanted to get them out of the way.

Then the evaluation reiterated its declaration of my "poor motor skills":

Visual motor skills are 6 months to 1 year below age expectations, and Julie’s handwriting is poor.

This is poor? I think this handwriting sample from around that time is typical of most kids of that age:

So there I was, age 11, reading this evaluation that suggested that I didn't have age-appropriate motor skills, the very skills that are necessary for being able to draw. When my mother came home, I shoved the evaluation in her face and demanded answers. I think I said something like, "What's the meaning of this?" and my mother told me I wasn't supposed to be looking at it, that it was meant for the psychologist I was going to soon be seeing. Well, again, how naïve… My mother hadn't want me to see the IQ scores, of course, but the horse was out of the barn, and she knew that I was upset. So to make me feel better she showed me results of an IQ test that I had taken two years prior to that one, in which the results were higher: 143 for verbal, 136 full scale, and… I don't remember what non-verbal was. It was definitely higher than on the other test, I think 115 or so. Full scale is not calculated by averaging verbal and non-verbal together, so to know for sure I'd have to find the results of this test again.

Why such a vast difference in results for tests taken by the same person? Damned if I know. Perhaps I was having a bad day on the second test. In any case, I'm sorry that I ever found these results, but it's a moot point because I know eventually I would have started asking questions-- my brother always did better in school than me, especially in math and science-- and my parents would not have been able to keep the results hidden once I reached adulthood. While looking for the psychological evaluation again years later, at age 17, I accidentally found my brother's IQ scores; they had somehow gotten chucked into my folder. He'd kill me if I revealed what they were, but let's just say that suspicions I'd had about him were confirmed.  

At the time that I found those scores, it really didn't bother me. But sometimes things happen in my life that make my mind wander to the IQ scores: Right now I'm taking a JavaScript class in hopes of getting myself a career as a web developer. I am having a really tough time with this class and am even behind most of the other students. I keep thinking about my non-verbal IQ scores and often find myself wondering if it is indeed a life-sentence, the handwriting on the wall that I won't be able to learn this material, that I'm just not smart enough. It's so awful to feel that way, even if I know that it's not logical.

And yes, I know it's not logical. In fact, psychologist Tony Attwood even said that the gap between verbal and non-verbal scores tends to close somewhat as the kid gets older. 

My IQ test had also said:

Weaker areas are those involving the ability to learn new non-verbal information, and the ability to attend, concentrate, and plan ahead.

And in light of that declaration as well as Tony Attwood's comment about the closing of the verbal/non-verbal gap, let me just leave you with this schematic of a plane that I drew when I was 13:

And the final product:

The Dreams Keep Coming

The dreams about the ex-best friend, Melanie, who didn't invite me to her wedding and ultimately abruptly cut me off after sixteen years of friendship just keep coming. I understand that she is ignorant, sheltered, and flaky. But that doesn't make what she did hurt any less, even seven years after the fact. Dreams about confronting her to find out why she did it usually come once or twice per month. And these aren't the casual, vaguely-remembered dreams that most people have. My dreams are intense, vivid, and often sensory, factors that significantly contribute to the massive emotional impact that my dreams have.

I have a variety of dreams. The most common one is that I run into Melanie somewhere. I call her name, and she takes one look at me and runs. I chase after her and grab her shirt sleeve and say something like, "STOP! I just want to ask you one thing."

Another variation is that for some reason I am together with Melanie. I pace around, trying to figure out how to tactfully broach the subject. Finally, I say something like, "Melanie, I have something to ask you, and… now, this isn't easy." I take a deep breath and ask, "Why didn't you invite me to the wedding?" In every dream, Melanie gives me a different answer. Most of her explanations are absurd, but as absurd as they are, I could easily see her using them as excuses. In one dream, her father was dead, and she said that she thought it would be difficult for me to be there and not see her father. I can't remember offhand what other explanations she has given, but in many dreams instead of answering she just doesn't say anything or runs.

In another dream, I ran into her husband and asked for a straight answer. He said, "She doesn't want to talk to you." I said, "Yeah, I get that. But I'd like to know why. One of you just tell me why, and I'll never try to contact her again, no questions asked." The dream ended there.

In my most recent dream, Melanie did something that would make sense for someone more caring, but something I am sure she would never do: She broke down crying, and said, "I'm so sorry. I was wrong. I wasn't thinking. And I truly regret it." Actually, forget "I am sure she would never do it." I know she would never do it. She isn't capable of the sort of sober self-reflection that I am (and many other people are) capable of. I can see now, however, that she might have had second thoughts about our friendship long before she abruptly cut me off in 2008.

One memory that should have set off sirens in my mind when it happened was during my senior year in college in New York City (2002). Melanie (who lives in Philadelphia) and I were on the phone. She said that her boyfriend (now husband) was over. I'd never met him, and she said, "Would you like to talk to him?" I said, "Okay." Her boyfriend got on the phone with me and said, "Hi. I hear you tell repetitive jokes."

Yes. That's what Melanie's boyfriend had to say to me. Why? I see now that this was probably all that Melanie saw me as. She didn't tell her boyfriend that I was a creative person who liked to draw and write. She didn't tell him that I got her interested in animation when we were kids and that's the reason she ended up going to school for animation. No. She told him that I tell repetitive jokes. Back then it upset me, but today I see why it should have raised alarms in my mind: That was what she thought of when she thought of me, not as a creative, intelligent person. I often wonder if this was why she cut me out of her life.

The fact is, I will never know for sure why Melanie did what she did. I have a number of theories, but all of them point back to my suspicion that she was afraid I'd do something to upset her at the wedding, and instead of addressing it with me took the easy route and cut me out of her life. If this is true, then Melanie is as fair-weather and flaky as Dad had warned me about ever since we were kids (Dad sees through people's bullshit more easily than anybody I know). And it says more about her than it does about me. Nonetheless, the dreams keep happening and I just want them to stop. I need closure.

I am going to write Melanie a letter. A hand-written letter, that I will mail this weekend. I don't expect her to write back, but I need to do this. Even if this doesn't stop the dreams, it will at least make me feel I've gotten the last word in. I don't care if it makes her think I'm a creepy stalker. I just want to assert myself and make her understand what she has done.

Well, perhaps I'm giving her too much credit for thinking she's capable of understanding what she has done.

The Butterfly Effect

This is a post not necessarily related to Asperger's. It's more for fun than anything else.

What is the Butterfly Effect? It is a metaphor that is often used to describe how seemingly inconsequential actions-- such as a butterfly flapping its wings-- can potentially trigger a chain reaction whose end result is quite significant-- such as a tornado brewing thousands of miles away from the butterfly. This is hyperbolic-- of course a butterfly flapping its wings will not contribute to a tornado, let alone one thousands of miles away. But you get the idea. 

We all experience a Butterfly Effect of sorts in our own lives. For example, perhaps you missed your train and had to wait an hour for the next one. In that time, you sat down next to someone. With time to kill, you struck up a conversation. You hit it off immediately. You talked even more on the train together. You exchanged contact information and… forty years later you are still happily married with two kids, one of which is now in her late thirties and who has just won the Nobel Prize for finding the cure for cancer. In short, if you hadn't missed your train forty years ago, there would be no cure for cancer today. 

That is, of course, an extreme example. But you get the idea. Here's an interesting one from my own life:

If my family had not moved to a new town in 1987, exercise would not be an important part of my life. Wow, that's reaching, right? Or is it? Let me explain:

For the first almost-seven years of my life, my family lived in a suburb immediately outside of Philadelphia. It was getting too congested and the public schools didn't have the best reputation. My parents wanted to move to a suburb that was less congested and in which there were reputable public schools. They found a house in a suburb twenty miles away. 

Okay, but what do wanting to go to public schools have to do with being an exercise fanatic? Do the schools have a renowned physical education program? 

Not quite.

My family is Jewish, and my mother wanted to bring my brother and I up as Reformed Jews (Scenes of her trying to get Dad, my brother and me to go to synagogue on the High Holidays are a lot like scenes of Marge trying to get the family to go to church on The Simpsons, but that's another story altogether). We joined a nearby synagogue. 

A few years later, Mom wanted to send my brother to overnight camp, and she wanted to send him to a Jewish camp. The first one she looked into was too expensive. In the days of no Internet, Mom had to search for another, less expensive camp. Mom asked the Rabbi, who recommended Camp Negev. My brother went there and loved it. I started going there a few years later-- in 1995-- after I was too old to go to the arts day camp I'd been going to since 1989. 

Oh, so Camp Negev has a renowned sports program?

No! Stop being so literal, and let me finish! No, not at all. There was one one-hour sports period during the day, and that was it. The rest of the day included work projects, discussion groups, swimming, electives, free time, and more. 

Having had undiagnosed Asperger's Syndrome, being fourteen years old and having just completed 8th grade-- another year of bullying, the worst so far-- I was so used to grudgingly accepting myself as someone who would have this horrible effect on people. I was convinced that the bullying was my fault, and I didn't even call it bullying. I thought it was a "normal" consequence of me being me. I was so used to this treatment that it was all I knew. Coming to camp, I imagined the usual middle school drama: I imagined girls putting on globs of makeup in the morning. I imagined girls whispering and giggling, and then when I would ask what was so funny, they would laugh and say, "Nothing!" I imagined people hating me, ostracizing me, and excluding me in every way,  no matter how hard I tried. And why wouldn't I think that would happen? It was all I knew.

The first two weeks didn't go so well. I was constantly on the defense, and I assumed the worst about people's intentions towards me. I had Asperger's-style crying meltdowns practically every other day. One of my counselors, Jonas, saw that I was struggling and reached out to me. He listened when I needed to talk. He didn't pass judgment on me, telling me I was immature or that I needed to "get over it", like my (misguided) parents and teachers did. In the throes of adolescence, he was someone I could talk to. He was the friend and mentor I needed. I developed a crush on him-- he was my first crush-- and he knew, but he was generally okay with it (unlike the later crushes, but that's another story, and another blog post). 

When I became more comfortable and at ease it was easier for me to make friends in my group. I discovered that Negev was a very progressive, left-leaning and accepting summer camp. Most of the girls didn't put on makeup. They thought that it was cruel to ostracize others for being different. In fact, many of these kids came from same-sex parent households and some of them were even openly gay or bisexual (unusual for kids in the '90s). They didn't get me at first, but when you're with people around the clock, it is easier for them to get to know and understand you. And they did understand and appreciate me. And I made friends with some of the boys, too. 

I had only been signed up for first session, but I suddenly wanted to stay second session. I almost wasn't able to do it because my parents didn't think they could afford it, but back home, my brother-- who lamented never having been able to stay second session-- convinced my parents to find a way to do it. So I stayed second session.

This has what to do with exercise?

Patience, patience! 

Camp Negev had a special day each session called Revolution, in which the CITs would kick out the counselors and run the camp for a day. Revolution was centered around a theme, such as history, a movie, animals, and more. The theme of Revolution second session was the time-travel movie Bill and Ted's Excellent Adventure. During one activity, we pretended that we went back in time to the era of prohibition. In a game similar to Capture the Flag, people were divided into teams and had to steal the other team's "beer" bottles, while also guarding their own. 

My team was deciding who got to guard and who got to try to steal the other bottles. I was always terrible at sports and terrible at running. Sometimes I wished I were good at sports and could kick total ass in soccer, baseball, etc, and the tomboy in me wished I had the strength to wrestle. But because I was bad at sports, I hated them. During this game, for once I wanted to be on the offensive and try to steal the bottles. I ran across the field to try to get a bottle. A girl on the opposite team spotted me and tagged me. I tried to stop too quickly. My right leg crossed over my left, and down I went . I felt a familiar surge of pain in my left ankle-- I had broken my left finger and my right hand over the past two years-- and I knew instantly it was broken (I could swear that I heard a CRACK when I went down, but I realize that was probably a false memory). I had to go home from camp five days early. And that's tough when every day at camp is like a week. 

After the cast came off, the muscle on my lower left leg had atrophied. It was difficult for me to walk at first. Dad explained to me that this happened because with my leg immobilized for seven weeks, the unused muscle broke down. So every day after school, I went for walks to try to rebuild the muscle. At first, because of the stiffness in the tendons around my ankle, I could only walk down the street and back. As the muscle regrew and the tendons loosened up, I increased this walking route until ultimately I mapped out a two-mile loop. After a couple months, I began jogging. I wasn't very good at it, of course. But I did it.

After a few months of this, Mom suggested I join the track team in the spring. I thought she was out of her mind. But I did it anyway. I always came in last at track meets, but I still enjoyed doing it. I got stronger, not just physically but mentally: the endorphins helped my self-esteem and gave me the strength to stand up to the bullies. I continued running track throughout high school.

The End. 

Or not.

I was very skinny growing up, and I thought it would be impossible for me to become overweight. But it happened. I got into some horrible eating habits in college, and I wasn't running regularly. I struggled with being overweight for several years. Finally, in the summer of 2012, on one particular hot day, I went to the pool (instead of swimming in the ocean, as usual). What was I supposed to do? Just stand there to cool off? Boring. I started swimming laps to give myself something to do, and I realized that I enjoyed it. Over the course of several months, I made swimming a regular part of my life. I adjusted my diet, and the weight fell right off, at a rate of about two pounds per week (although I've gained some back, I'm still within normal limits and am working on taking it off again). 

To this day, three years later, exercise is still an important part of my life. I alternate between running and swimming (though lately it's been swimming because last year I injured my knees while running, which I'm still not over yet) and cardio/weight machines at the YMCA. But I can tell you had I not had that history of running track it would not have occurred to me to take up swimming. I just would have gone to the pool that hot day in 2012, splashed around a bit, and gone home. I had been meaning to put exercise back into my life, but it was so difficult without someone to coach me. Finally, I just made myself do it, and that would not have happened if I had not had a history of exercise to look back on.

So let's go over this Butterfly Effect:

In 1987, my family moved, and we joined the local Reformed Synagogue. My mother wanted my brother to go to a Jewish camp. The one they were looking at was too expensive, so the Rabbi recommended Camp Negev. My brother went to Negev and loved it, so I decided to go there after I "outgrew" my arts day camp. It was tough for me at first because I expected to be bullied, but Jonas reached out to me and made me want to stay second session (and, of course, come back in years to come). During second session, I broke my ankle. After the cast came off, I began daily walks to rebuild the atrophied muscle. After the muscle was restored, I began jogging. Mom told me to join the track team, which I did. I loved exercising, but being human I got into bad habits in college, ultimately putting on weight. At my worst, I was very close to clinical obesity. Years later, on a hot day, I went to the pool to cool off, but ended up swimming laps. It occurred to me that this would be the answer to getting me back into an exercise routine. I did just that, and I'm still in this routine today. 

So yes, moving in 1987 indirectly made exercise an important part of my life.

Could my parents have found out about Negev through a rabbi in our old town? Possibly, but even if they had, there still might have been a huge difference in my experience at Negev. When my family moved, they had me repeat 1st grade to give me "another year to mature". They never would have done this in the same school (kids latch onto that). So if I hadn't moved, I wouldn't have been held back. The age groups at Negev were based on what grade you were going into, not your age. And Jonas-- an important role in this Butterfly Effect, as you've seen-- wouldn't have been one of my counselors. 

As an addendum, with Jonas as an important part of this equation, he had his own Butterfly Effect of sorts that got him to Camp Negev. He and his ex-girlfriend had been working at a different summer camp. But they broke up, and (if I remember correctly) they thought it would be awkward for them to be at the same camp. So she continued working at the same camp and Jonas went to Camp Negev (or they both agreed to go to different camps; I don't remember). Had he not broken up with his girlfriend, I never would have met him, I wouldn't have stayed second session and… you get the idea. No exercise routine for me today.

Yes, that's the effect of the metaphorical butterfly flapping its wings thousands of miles away.

A Painful Memory that Resurfaced

This morning as I lay in bed, a memory randomly came back to me. In the summer of 1998, when I was a CIT at Camp Negev, I had a crush on an Israeli counselor, Omri. Like all my other crushes, we started out on friendly terms, he figured out I had feelings for him (despite protocol that I had implemented to try to keep myself under control), and by the end of the summer he wanted nothing to do with me. My memories of him are very bittersweet and nuanced, and part of me still never got closure for that summer. The memory in question that came back to me this morning was this:

We were at a staff/CIT meeting on the porch outside the rec hall, and there was a box of oranges on the floor. People held out their hands to catch the oranges as Omri tossed them. I held out my hands. No orange. Finally, I said, "Hey, Omri, could you toss me an orange?" He said, "Get it yourself."

Just let that sink in.

The Perpetual Clean Slate

I left my public school at the end of 5th grade (age 11) and and spent my 6th grade year (age 12) at a K-8 private school, where my mother was teaching.

A fresh start; a clean slate.

Then Mom got a job in the public schools and could no longer send me to the private school, as it was too far away.

An entire year had passed since I had been in the public school system, and since a year is a long time in childhood, 7th grade (age 13) was another fresh start (sort of).

Another clean slate.

When I started going to Camp Negev in the summer after 8th grade (age 14), it was another clean slate, another fresh start. Since I didn't realize that I would be zoned for a different high school (10th-12th grade in my district) from most of the kids at my middle school, I was sure my camp would be my last clean slate until college.

My last clean slate until college? Yes, what a lot of pressure to work under.

As stated, I was zoned for a different high school from most of the kids in my middle school.

Another clean slate, another fresh start. 

I went to college.

Another clean slate.

I went to grad school.

Another clean slate.

I took a job at a library in Maine. I got fired. Then I took a job at another library in Massachusetts.

Another clean slate.

I got fired again. I decided was done with libraries.

So what happened to all these clean slates? I went to the small private school and generally got along well with everyone else. But then I had to go back into the public school system. I was bullied relentlessly, verbally and sometimes even physically. I didn't feel safe going to school. My parents and brother didn't seem to really understand that I was being bullied. Back then, people didn't really take bulling seriously, and the term "bully" meant "the school bully", as caricatured on The Simpsons, for example: The kid who indiscriminately shakes down everybody for their lunch money. Not a group of kids who targets one person. No, my parents and brother told me that I brought the treatment on myself with my relentless wiseass comments and because I didn't dress and act feminine enough.

I went to Camp Negev. At last things seemed to be going right. I was with a group of kids who understood and appreciated me. But then in the CIT program, I learned that many of the counselors were wary of me. They said that I was inappropriate. It's true, I was sometimes, with my jokes, etc. Part of the reason I sometimes acted inappropriately was that I was rebelling against my parents because they never let me do anything irreverent, even with my cousins around. I felt asphyxiated. So the dam burst, so to speak, at camp. But I did come to the CIT program prepared to "grow up", as I was no longer a camper. However, it was too little too late. And I should note that the other counselors' concerns about my being inappropriate were hypocritical as many of the counselors didn't care about the kids. They belittled the ones who were different, left them alone in cabins, and smoked weed in the staff lounge. Sometimes they even came to activities while high. They were just inappropriate in more socially acceptable ways. I wasn't given a group of kids until second session, and despite the ways that I had toned myself down for that summer, I wasn't hired as a counselor the following year.

I found another camp to work at. I made some stupid mistakes and got fired, so then I found another one.

I got a fresh start in the summer of 2000, working at a camp in Michigan. I was hired again in 2001, but in 2002 I had to come back as a volunteer, as they wouldn't rehire me.


As for high school? I was very quiet because I was so worried about screwing up. The result? I wasn't bullied, but I was too timid and didn't make any friends. You can't live like that. Remaining withdrawn in high school is one of my biggest regrets.

In college? I made friends but starting junior year, most of the teachers didn't like me. I wasn't used to this; in high school teachers generally did like me. When I went to grad school, I got a fresh start and fortunately the teachers liked me.

At the library in Maine?

The parents were wary of me and constantly reported me to the director. I was fired. I read books about child development and came to the library in Massachusetts, armed with more knowledge to help me work better with little kids. Not good enough. I was fired again after four months, although this time there were only two complaints. The rest of the staff liked me, but my boss didn't. I knew by the end of the first week that she was avoiding me.

Mom told me, "You'll get a fresh start" when I entered 6th grade at the private school and 7th grade in the public school system that I grew up in. She told me that when I went to summer camp, to high school, to college, when I worked at the camp in Michigan, and when I started at the library in Massachusetts.

I cringe about "clean slates" and "fresh starts". A clean slate is only clean so long as you can disguise who you really are. Ultimately, it's less about learning to stop telling inappropriate jokes and whatnot (although it may seem that way superficially) and more about not letting who you really are come out. Whether or not my parents realized it, when they told me, "You'll get a fresh start," they were really saying, "Try again to be someone you're not and things will go well." And as you can see, many of these "fresh starts" (though not all, by any means), ultimately failed.

It is for this reason that experts advise parents of bullied kids not to change schools unless it's to a private school or some kind of "special" school. You bring who you are to any new situation, and when the results are the same, the message that one gets is that they've failed, over and over again.

Imagine what it feels like to go through life like that.

A Visit from the Monster

I've been having a case of The Monster all week. Just to remind you, The Monster is when I find myself in a horrible state of mind because of something I've done wrong. Actually, it's often more as a result of people's reactions to what I've done wrong. Even if the reaction is something as benign as, "You have to make sure you don't say things like that", it can trigger a cascade of intense, overwhelming emotions. I feel such horrible mental pain to the point that it's practically physical. I find myself angry at myself and hating myself. In fact, at work (it's a low-paying temp job) this week I had to go into the bathroom to cry. I was hyperventilating and I had to stop myself from howling from the agony I was feeling. I went back to my desk, still in tears, and a couple people asked me what was wrong. I told them that I was just going through a rough time, that it was "personal issues, you know?".

The slightest trigger can bring back a bunch of old memories, many of which I'd put to rest up until two years ago. What happened two years ago, you ask? Let me start by saying that two years ago I was in a better mindset that an I'd been in, well, ever. I'd lost 40 pounds, I was getting into excellent physical shape and developing athlete's heart, and my self-esteem was through the roof. I recall one day specifically when I had just left the Dodge YMCA in Brooklyn, reeling from endorphins from my latest killer workout. I walked toward the subway, plugged into my iPod and listening to a song that had a message of hope. It perfectly complemented the wonderful changes I was making to my body and my brain. At that moment I felt like someone could come up to me with an AK-47, shoot me, and the bullets would bounce right off.

That was early 2013. Then I made the biggest mistake of my life: I left New York City and took a job at a library in Maine. Yes, in my infinite wisdom, when I went back to school for library science, I thought it would be fun to concentrate in children's librarianship. I thought it would be fun to do activities with kids and that I'd just have fun with them. I mean, it was fun doing just that when volunteering at a New York library for seventeen months. But what I didn't count on were the parents, which were pretty absent in the library in New York that I volunteered at. The short version is that the parents in Maine constantly complained about me, saying that I was mean to their kids. I was finally fired after only four months when parents told the library director that their kids were afraid of me. I was 5'2" and weighed 122 pounds. I don't know what the parents thought I could possibly do to their kids, but truth be told, this wasn't the first time I've heard that people have said that they are afraid of me.

The Monster was awakened.

I bounced back and took a job in a library in Massachusetts. Once again, I was fired after four months. To my knowledge, only two parents complained about me. But the library director took those complaints very seriously. When parents complained about the other librarian, these complaints were just laughed off. Why? My shrink says she thinks that the director saw right away that there was something off about me and was thus more sensitive to my infractions. In fact, this phenomenon of not being able to get away with little things when neurotypicals get away with outrageous things is a very common Asperger's experience. Needless to say, I want nothing to do with working at libraries anymore.

The Monster was awakened again, and I haven't been able to put him to sleep. At most, he lies dormant, waiting for the next thing in my life to go wrong and to come back. When he does, he constantly whispers in my ear that I bring my problems on myself; that I cause people distress and misery; that I'm creepy, defective, and narcissistic; and that I deserve bad things to happen to me, both physical and emotional. He tells me that he hopes that somebody beats the shit out of me so that I get just punishment for all the problems I cause and my refusal to learn from my mistakes.

Just to clarify, this is not a literal voice-in-my-head. But it is very powerful. I have tried all week since the Monster's initial visit on Monday to neutralize him. I've gone running (even though I shouldn't because I still haven't recovered from an injury to me knees from last year) and I've gone swimming. It provides temporary relief, and I feel a little better since Monday, but it's not enough. I'm still reeling from some anger. I don't even know who or what I'm angry at anymore, but I just wish the Monster would die. The best I can do now is just wait until he lies dormant again.

Don't get me wrong, even when I was doing well emotionally the Monster would still come sometimes. But at the most he would stay for a couple hours and then I would be fine again. Now he comes for days at a time, and in this most recent instance, it's been closing in on a week.

I am just so sick of a lot of things.

I am sick of…

1. ...Knowing that if I get into a conflict with somebody, even if they're at fault, I inevitably have played a role in the incident.
2. ...People telling me "It's your overall personality; I can't even explain it", expecting me to just smile like this while they say it, something no neurotypical would ever be expected to do. In fact, BOTH LIBRARY DIRECTORS said this to me. 
3. ...That a lot of people in my life-- my brother, cousin (and yes, I'm close with both), and some of my friends who've known me longer-- feel entitled to wag their finger at me and lecture me like I'm a child.
4. ...My dad framing my life as a case of maturity. Even when he thinks he's complimenting me in that regard, it's a backhand compliment. He says, "You've matured a hell of a lot over the years." But he says it in a voice that sounds like, "God, you were so awful back then." To raise your consciousness, think about how it sounds telling someone with Down Syndrome who's improved in math, "You're a hell of a lot smarter than you used to be." It sounds like, "God, you were so stupid back then." 
5. ...Being expected to understand how everyone feels but then being told I shouldn't be expected for people to understand me. I'm supposed to shrug and go, "Okay, no problem" and, again, smile like this. Recently, my brother said of this, something like, "Yes, it's unfair, but you know why that is." 
6. ...Being expected to repress every little thing that comes naturally to me, whether it's my choice of discussion topic, my opinions, my sense of humor, or anything else. Sometimes I do this and then everything goes well, but it's exhausting. The dam breaks eventually, the holes in my mask form, and then I get lectured on how I need to learn to do A, B, and C, and not to do X, Y, and Z.
7. …Hearing sentences that start with, "You need to learn…" or "You need to work on"...
8. …Knowing that the stories I've related on most, if not all, of my blog posts are told from the point of view of an unreliable narrator and that I am missing one crucial element. My brother and one of my older friends have both told me that when I tell a story they know that if they ask somebody else, they'll have a story that's diametrically opposed to mine. My brother also recently said that I frequently have a very skewed version of situations, often with catastrophic results. 
9. …Of people asking me what I do for a living when I'm constantly in between blue-collar jobs, despite having a Master's Degree.
10. …Of the fact that most people have one or two skeletons in their closet when I have a whole fucking graveyard.
11. …Of being observed. I've been observed one way or another since I was a little kid, and by the time I was eleven I was pretty aware of it. It still goes on today. I'm sick of being observed, evaluated, gossiped about, told on, etc. I'm also sick of people like my brother telling me that nobody owes me answers when I ask exactly what happened that got people upset enough to tell on me, or what they said about me. It's easy to say that nobody owes you answers when this sort of thing rarely happens to you.
12. …Of people like my brother telling me that part of being adult is learning to repress my emotions. The problem is when I do that it only delays the inevitable outburst, which only makes things worse. My brother doesn't see whatever outbursts I have as an end result of repressing and repressing and repressing. He sees it as me giving into some emotional whim. Dad has the same opinion. Part of the problem is that, as I've said before, leaving a situation to cool down and prevent such things is seen as immaturity. 
13. …Of my pain being dismissed. If the Monster starts fucking my brain and I feel overwhelming emotions which I express, Dad tells me things like that I'm just trying to get attention and that I need to grow up. The irony? For years Dad understood me a lot better than Mom. And actually, there are still aspects of me that he understands better than Mom. But the deep psychological turmoil? Mom seems to understand it better (although this is a fairly recent development), perhaps because she has students who write in their journals about cutting themselves or being suicidal (no, I've never done/been either). I think only in the past few years have students come out about this sort of thing to teachers. They probably cut as much then as they do now but were shit-scared to talk about it, even in journals.
14. …Of having to think before I open my mouth or send an email or ask somebody something.
15. …Of having to expect that something will go horribly wrong, even if the situation I'm in seems wonderful at first.
16. …Of being told I'm not trying and that I need to try harder.
17. ...Of when something does go wrong, getting an entire fucking list of things that I did wrong, some of those things which still don't even seem wrong. When most people are told they've done something wrong, it's one thing, not a whole fucking list.
18. …Of never being allowed to be 100% right. Ever. 
19. …Of being told that I'm aggressive, too intense, and that I make people uncomfortable. Sometimes people don't even have a tangible explanation for these things when I ask for ones.
20. …Of feeling like I'm in a SIMS game. For those of you who don't know the SIMS, it's a simulation game where you take people, put them in houses, and let them develop relationships, get jobs, etc. A popular thing to do-- which my friends and I did in college-- is to "fuck with" the characters. We would build them a pool, let them jump in, and take the ladder away so they can't get out. Or we'd put them in a room with no door. Sometimes I feel like I am a character in that game and some higher being is fucking with me, watching me stumble through life.

In fact, I sometimes feel like the Universe is trying to put me in my place.

Empathy

Another thing I'm curious about. Aspies are supposed to lack empathy? You seem to me unusually empathetic.

These were the words in a mildly-amusing-as-well-as-flattering private message from someone I am friendly with online. Yes, the pervasive myth that people with Asperger's Syndrome lack empathy is still making rounds. It reminds me of some kind of abstract Hydra: That is, instead of cutting off one head just to watch two grow in its place, I clear up the "Aspies don't have empathy myth" for one person just to to have to clear it up for two more people. It is a myth that has gone viral and just seems impossible to stop.

Do Aspies lack empathy? The problem is that the term "empathy" has two very different meanings. Here's dictionary.com's definition:

the psychological identification with or vicarious experiencing of the feelings, thoughts, or attitudes of another.

In other words, the definition can be interpreted in two ways: 1) Cognitively understanding that someone else is suffering (or joyful); whether or not the person cares about these feelings is a different question entirely. 2) The visceral reaction someone gets when seeing someone else suffering (or being joyful); that is, he's suffering (or joyful), so I'm suffering (or joyful) too, or  Unfortunately, when most people use the term "empathy", they use it in the second definition I am referencing: they believe that the Aspie knows that the other person is upset or joyful but simply does not care.

Reasons Why Many People Believe Aspies Lack Empathy

1. Difficulties with cognitive empathy are mistaken for lack of sympathy 

Yes, it is true that people with Asperger's Syndrome sometimes have problems with cognitive empathy, which is one thing that gives rise to the myth that they lack sympathy, more specifically, for another person. Sometimes Aspies do not realize that somebody else is upset. Or perhaps they do understand that the other person is upset but cannot quite understand why (depending where on the spectrum they are!) and the upset person thinks that they are self-centered and don't care how other people feel. Often, once the Aspie realizes that the person is upset, he or she cares just as much as any neurotypical person would. Conversely, sociopaths have a lot of cognitive empathy-- and they exploit others' emotions for their own selfish whims.

To give a very concrete example of this phenomenon in my own life, I need look no further than my horrible years in middle school. More times than I can count, I would approach a crying friend (and I use the term loosely, because they were fair-weather friends!) and ask her what was wrong. Her other friends would glare at me and ask, "Where have you been all week?" Because I missed subtle cues that something had been bothering a friend all week and did not realize it until she was doing something obvious-- crying-- the other girls thought that I didn't care, that I was only concerned about myself. Middle school is often the worst for girls with Asperger's because girls at that age tend to form relationships based on emotional intimacy, secrets, etc., rather than a shared interest, such as a favorite movie. The social dynamics become more intense and demanding. Boys that age are more likely to form friendships around shared interests-- it is for that reason (and more) that I wish I had tried to befriend boys at around that age. I had much more in common with them in terms of interests and styles of social interaction. Today I find that I generally get along better with men than with women (unless it's in a setting with like-minded individuals; then gender makes no difference).


2. We find it exhausting to be social butterflies

My very neurotypical mother is a high school teacher. She learns all of her students' names very quickly. She gets to know each kid individually and knows all their likes and dislikes. Years later, if she runs into one of her students again, she usually remembers him or her. I could not do what she does. Ever.

In my years working at summer camps, I bonded with a few kids over common interests. For example, if a camper wanted to learn to draw, we would bond over that because it was something concrete I could teach them. Or they could at least show me their drawings and I would be interested in seeing them. But I have difficulty pretending to be interested in a little girl's love of princesses, for example. I was not one of those counselors who knew everything about each camper, and it always took me forever to learn everyone's name. I'm also terrible with faces, which didn't help matters.

Fortunately, many of these kids usually liked me because they thought I was fun and funny. In a video I shot during my CIT year at Camp Negev, some 11-year-old kids are jumping up and down and shouting, "We love you, Julie!" But I don't remember the names of most of the kids that I've worked with. My style in terms of working with kids involves a very narrow, usually impersonal focus. Kids who wanted to bond with their counselors on a more personal level usually went to their other counselors. Unless, of course, the kid has psychological/neurological issues. Then they came to me. Kids with such issues usually liked me, probably because I understood them better and could give them better advice.


3. We react differently than neurotypicals to another's joy or distress 

If somebody I barely know at work, for example, tells me that their mother is in the hospital, I do not gush with emotion. I think it's unfortunate, but I am not overwhelmed with emotion at this news. I say, "Oh, jeez. I hope she gets better," and I forget about it ten seconds later. The expected reaction-- from both sexes, but I think women especially-- is to react viscerally, or at least pretend to. That is, people are expected to at least seem extremely upset even if they don't know this person. And sorry, I think a lot of the time it is just an act if the person doesn't know the other person well. It is a social ritual to stay in others' good graces. Same with the social ritual where everybody tells a new mother that her baby is "perfect". Sure, some people mean it, but I think a good portion of them are lying, just saying what is expected of them. What do I say? I say what I mean. I tell the new mother that she's going to be a great parent.

The thing is, I sometimes question my own capacity for empathy. When something bad happens to a friend, I try to console him or her. But I do not get emotionally involved with the friend's issues. I just try my best to help. Am I in the minority? Do most people get emotionally involved? Do they get a visceral reaction, feeling the ache of the friend's breakup (for example) as if it were happening to them? I don't. And also, do I try to anticipate the possibility of hurting another's feelings or annoying them in some way because I genuinely care about their feelings, or am I just trying to avoid trouble for myself? Or both? I really don't know. And why do most people try to avoid hurting or annoying others? Does avoiding trouble for themselves factor in as well? I really don't know either.

I am more likely to get visceral reactions when I see a suffering animal than when I see a suffering person. I once broke off two pieces of bagel to give to two pigeons. One larger, dominant pigeon ate his share and stole the other pigeon's piece. When the smaller pigeon tried to eat his own share, the larger pigeon bit him. This made me really upset. I wanted to kick that bullying pigeon away from the little pigeon. I tried to feed the small pigeon again, but the same thing happened. I tried scaring the larger pigeon away by stamping my feet. It didn't work. I threw a piece of bread a few feet away so the larger pigeon would have to chase it. Unfortunately, the smaller pigeon gave chase as well, so I was unable to feed the smaller pigeon separately. It made me so angry that this little pigeon was barely able to take a bite while this alpha male (or female? I don't know what sex it was) got his way because he was bigger and stronger.

As for suffering people, I rarely get visceral reactions where they're concerned-- unless it involves children, particularly children who are victims of bullying. And I suppose the pigeon incident ties in nicely to my visceral reactions for the children who are victims of bullying.


4. We find ourselves in very extreme circumstances that makes it look like we lack empathy

The obsessive crushes I've discussed in a few blog posts immediately come to mind. Most people are able to move on if they think their crush is avoiding them. I simply couldn't. But I knew that it was also wrong to be pushy towards these guys that I liked. It was this constant balancing act, a psychological war in my mind to try to figure out how to allow myself to interact with them without being too pushy. As for the times I waited for them outside of buildings at summer camp and on my Israel trip, that was the end result of the warfare in my mind. On my 1997 Israel trip I didn't say, "Hey, you know, I think I'll wait for Charlie outside a building. That's not weird at all. That sounds like a great idea." Of course I knew it was weird, but I was just experiencing intensely powerful emotions that I couldn't handle. As a friend from that trip put it: "You were so gone over Charlie that you didn't know what to do." But to the observer it looks like stalking and lack of respect on my part. Even the following summer back at camp, in 1998, it was not enough that I implemented strict, assiduous controls for myself to make sure I did not fall into those same behaviors again (also discussed in the above linked post). Why? Because in the last week  or two of camp I did fall into those behaviors. People commented that I seemed self-centered for hyperfocusing on these crushes, and they did not realize that it was not a conscious decision. It was that my brain was hijacked by neuroterrorists, as I call it, and I just didn't know what to do.

In other circumstances, such as trying to navigate middle school and having to watch my every move lest others start trash-talking me, people would ask me, "Why are you so focused on yourself? Why don't you ask other people how they're doing?" Because when your emotional survival depends on not becoming a target for bullying, the last thing on your mind is how other people are doing.


5. We don't always relate to what upsets others or makes them happy

I get a strong, visceral reaction from seeing victims of bullying suffer, from seeing children with psychological/neurological issues suffer, and from seeing animals suffer. I do not get a visceral reaction from hearing that my friend is having problems with her boyfriend. I've never been in a relationship and cannot relate directly to this. When I try to help, I tap into my issue of obsessive crushes to try find something relatable, but that is the best that I can do. I really cannot deal with a friend's relationship drama, and I don't want to (though I want them to feel better, of course), and they probably shouldn't come to me anyway because I have no good advice for them. But I suppose I am flattered that they do come to me.

In terms of joy, I really cannot relate to the joy a parent feels when having a baby. I can't even imagine feeling joyful about having a baby. And if I had any doubts about my declaration about not wanting kids, they were torpedoed when I began having recurring dreams about being pregnant and feeling horrified (in a couple dreams, I had the baby and thought, "What am I supposed to do with this?") The only time I really cared when someone I knew had a baby was when my cousin gave birth. But it wasn't this whole motherhood-is-an-amazing-and-rewarding-and-beautiful thing or a babies-are-so-precious thing. It was more of, "Oh, cool.  This person I grew up with is having a kid. It will be fun to watch him grow up."

The Irony

Now wait a second. Isn't it only natural that people tend to empathize with and therefore sympathize what they can relate to? Most people can relate to relationship drama and babies, and so most people are going to have the expected reactions. On the the other hand, most people can't relate to a lot of what I have been through. The girls in my middle school could not relate to my inability to see that another girl was upset, and so they could not empathize with how my confusion tormented me. Most people cannot relate to needing space from games of social football, so to speak. They cannot see why such a thing would be exhausting. No sympathy there, either. Most people cannot relate to being bullied at school. They think that to be bullied as bad as I was that you have to bring it upon yourself. No sympathy. Obsessive crushes? Same deal. Not thinking about others' needs because one's own emotional survival is in jeopardy? Forget it.

In other words, many neurotypicals lack empathy and sympathy for people with Asperger's because they cannot relate to what we go through. But because their neurotype is in the majority, our not relating to them looks like lack of empathy and sympathy whereas their inability to relate to us simply means our circumstances are too weird to be relatable.

And one more thing...

I'm going to, once again, plug a book by my favorite non-fiction writer, Richard Dawkins. The Selfish Gene. It is a great book with a misleading title, and the gist of the book is that natural selection works on the level of the gene rather than the organism. The genes are selfish (in a metaphorical sense), and this selfishness of genes gives rise to altruism. After all, family members share copies of these genes, and being altruistic towards them increases their chances of being passed on to another generation.

I once had a conversation with my mother about how people go through social rituals that are often phony: telling someone their baby (which they really think is ugly) is "perfect", insisting on paying for a meal even though they know damned well that the other person is going to cover them anyway, offering a Christmas guest leftovers to take home even though the host knows the guest probably doesn't want them... I told my mother that I think these rituals are really to stay in the good grace of others who might be able to reciprocate someday when the stakes are higher. My mother, missing the point that I was trying to offer an evolutionary explanation for these rituals, said, "No, it just makes them feel good." Okay, fair enough. But what does "feeling good" mean? There is a reward system in the brain that perpetuates behaviors that benefit oneself. If I remember correctly, oxytocin in the brain is the reward. So while the person might "feel good" from helping someone else, ultimately the individual (or their genes, if you want to get technical) are benefiting.

We are all out for ourselves in the end, and no amount of sympathy and empathy-- no matter how genuine-- changes that fact.