Sober Reflection About Sober Reflection

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Is It Ableism? Part 6: Accommodation

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Is It Ableism? Part 1: Revisiting the Dark Ages

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Frustration, Anxiety, and Tension Part 2: A Witch's Brew of All Three

In my previous post, I discussed the way frustration, anxiety, and tension can mount as you try hard to better yourself, only to be dismissively told that you're not trying. But what happens when these demons overwhelm you and you end up doing something stupid and get into even more trouble than before?

One particular incident happened to me at age eighteen, on a Saturday morning in 1998 during my senior year of high school. I was taking a figure drawing class at a local university, and during that time in my life, I was dealing with a lot and my anxiety was like a raw exposed nerve.

First, I had just finished what would’ve been my final summer at Camp Negev. I had been in the C.I.T. program that summer, and it was clear that I would not be hired as a counselor the following year. Camp was the only place I’d ever felt comfortable, and it was being taken from me. This was coupled with knowing I would not be allowed to go on the gap-year Israel program affiliated with camp. Triple that with the stress of getting ready to apply to art school to study animation. It was becoming apparent from looking at the other students’ work that they were much better than me. Did I even have a chance of getting accepted to art school? That was quadrupled with the constant feeling that my parents didn’t understand me and didn’t support who I was. Even if not their intent, they often made me feel I had to change.

What many people didn’t understand was that I was thinking about these issues constantly, as if a little bug were in my ear whispering harsh criticisms to me: “You can’t draw well enough.” “You’re a horrible person and nobody at camp wants you back.” “You can’t spend a year in Israel because there’s something wrong with you and you aren’t fit to be around normal people.” “You’re not feminine enough and you should have outgrown that tomboy stage years ago if you want anybody to accept you.”

To make matters worse, I noticed early on that the teacher of the figure drawing class did not seem to like me, often talking to me in a condescending manner. I don’t remember specifics, but I do recall that I was trying to convince myself it was just my imagination. After all, my own parents often commented that I "misinterpreted" and "read too deeply into things"-- even when I knew damn well what I was looking at. One day when I was in the bathroom, a girl from the class commented, “I don’t like the way the teacher talks to you.” At least there I felt validated, that this wasn't my imagination. I was also glad to know that somebody was on my side.

As time went on, it was becoming increasingly clear that the teacher not only didn't like me but genuinely disliked me. I watched in resentment as she got along well with the other kids and really seemed to like them. They also seemed to like her, often laughing together like old friends. Her loud, boisterous laugh got on my nerves, as if it were rubbing in my face how the others could get along with her and I couldn’t because there was something wrong with me. What indeed was wrong with me, I wondered, that made her feel that she didn't have to be nice to me? Once, she even chastised me for arriving two minutes late for the 10:00 class. A week or two later, she assured another student who apologized for arriving at 10:07 that "seven minutes is no big deal."

At some point during the semester, something happened that made the teacher take me into the hallway in frustration. Unfortunately, I don’t remember what it was, but I am confident that if I found a record of the incident somewhere, it would come right back to me. We had a tense conversation that ended in some kind of truce, for lack of a better term. At some point during the discussion I mentioned that other teachers I’d had in other classes at the school liked me.

But the dynamic between us did not improve.

In the second-to-last week of class, I was particularly on edge, the raw exposed nerve particularly irritable from the accumulating tension over the past few months. The teacher did her signature laugh when talking to one of my classmates. For some reason, it was at that particular moment that I had reached my limit. I whispered, “Aw, shut up!” At least, I had meant to whisper it, but I accidentally said it loud enough for her to hear.

The teacher yelled, “Excuse me? Who did you just tell to shut up?”

The room fell silent, all eyes on the teacher and me.

In a panic, I stammered, “Nobody. Myself.” The teacher grabbed me by the wrist like I was an unruly child and pulled me into the hallway. Eyes narrowed into slits, she leaned forward, inches from my face. She yelled at me about every imperfection I had: speaking out of turn, getting openly frustrated with my artwork, not always following directions (I guess she thought this was intentional). At one point, she said, "I have tried putting myself in your shoes. I realize that there is something wrong with you." She also said, “You are going to fuck yourself over if you think you can go through life acting like this. I have had it with you. You make me feel like shit! Oh, you know all those other teachers who you said liked you? I’ve talked to all of them and they said they didn't like you. I have been pulling every string that I can to make sure you don’t go to this school.”

Humiliated from having heard my own self-criticism come out of another person, I sheepishly said, “My teachers in high school like me.” Her response was an even more exaggerated version of her signature laugh, as if it were the most ridiculous thing she had ever heard-- how could anybody like me? Then she told me I could come back into the room and work but I wasn’t allowed to talk to her. She said if I had questions to ask the other students.

Needless to say, I only went back to get my things. Then, I found a payphone and called my parents who, thankfully, had cell phones back then. They were at a restaurant with a friend. Just as their food arrived, they got my call and had to leave to pick me up. When I found out this information, I thought to myself, "God, my parents can't even have breakfast without me fucking things up. What is wrong with me?"

My parents arrived, and I waited outside with my mother while my father went in to talk to the teacher.

When Dad came back outside, he told Mom and me about the conversation he'd had with the teacher. He said that as soon as the teacher realized that the guy who came into the room was my father, she sent her students on break and vigorously shook his hand with both of hers, obviously knowing that she was in trouble. Then, when my dad called her out on saying that she was going to make sure I didn’t go to the school, she said, “Oh I just mean if she comes I’ll make sure she gets more psychological support.” Dad said, “I’m her father and I’ll be the one to decide what psychological support she needs, not you.”

In a desperate attempt to explain the situation to my parents, amid tears I said, "It's my OCD!", invoking my recent (and ultimately incorrect) self-diagnosis of obsessive-compulsive disorder to explain why I had the issues that I did. Dad shook his head and said, "No. This is just another case of you saying the first thing that pops into your head." On the car ride home, Mom told me that what I had done was inappropriate and that I needed "to learn to behave appropriately." It frustrated me that my parents seemed to think I was acting like this because I wanted to.

Don't get me wrong-- my parents were pretty pissed off at the teacher, but at the time they failed to grasp the reality of situations like the above. I had tried so many times over the years to explain that outbursts like these were the end result of trying to contain myself and the unbelievable anxiety I felt, but they never seemed to get it. Aside from the autism spectrum being mostly unknown, concepts like "chronic anxiety" were not topics of mainstream discussion. "Anxiety" was understood to be a momentary discomfort, not something that engulfed your entire life. I didn't even use the word "anxiety" to explain myself; rather, I often invoked a rush of adrenaline and the fight-or-flight response associated with it. I only even knew what these things were because Dad once told me about something he had read about them in college.

Years later, I found some notes Dad had taken when he called the school the following Monday to talk to the director of the Saturday program. Apparently the other teachers hadn't wanted me in their classes either.

This incident happened almost twenty-three years ago, and this type of issue that I had is largely under control. But the memory still hurts sometimes. It hurts because this was not the case of a teacher who was mean to everybody else also being mean to me. And the message that I got from the incident was one that I continued to get well into my adult life: That I am just "too much". I've been long expected to understand that I have had this kind of profound and negative effect on people that violates them in horrendous ways, and that their extreme reactions, while not ideal, are understandable under the circumstances. In fact, despite how upset my parents were with the teacher, they actually urged me to go back for the final class-- which I had no intention of doing-- because in doing so I would convey the message that I wanted to be "mature". That carries the implication that my teacher's response, while wrong, was not egregious. And no, I did not go back.

It also hurts because when I discussed this incident in autism groups in Facebook and asked if anybody had similar stories, all the "similar" stories I got were ones involving them as elementary school kids missing directions or crying in class only to get indignant hell from a teacher. None of them were stories about them in high school getting in trouble, let alone for saying something stupid. I suppose it's possible that they're just not writing about them because they're too embarrassed. But I get the impression that many of them learned early on that if they just shut up they would stay out of trouble. I don't know if it means that I was exceptionally bad at masking, that it was actually a sign that I was mentally stronger, a combination of the two, or neither.

I realize that we as a society have come lightyears since the '90s and that if this had happened today, there is a good possibility that the teacher would have been fired on the spot. But unfortunately, I was a teenager in the '90s and I have this story in my knapsack. It still hurts, and it's still confusing.

I still have the same self-doubts sometimes.

Masking (the autistic kind, not the COVID-19 kind)

As always, names and places changed...

In a journal entry dated January 31, 1996, I wrote, "Everything about me is wrong. I want to try to change it by June."

At the end of the previous summer, I wouldn't have dreamed of writing something like that in my journal. I had spent almost two months at Camp Negev, where I felt accepted and appreciated for the first time. Entering 9th grade (the final year in middle school in my district) in the fall with my newfound self-esteem-- despite having endured several years of bullying-- I felt incredibly optimistic. 

That optimism, however, didn't last. Having been regularly teased since 2nd grade, the childish teasing escalated to bullying by 5th grade and to severe bullying by 8th grade. In 9th grade, it had reached a crescendo. I didn't feel emotionally or physically safe coming to school. Every day in ceramics class, kids threw balls of clay at me while the teacher told me to "just ignore" the physical assault I endured. In other classes where I was regularly forced into group projects (times have changed, but back then teachers seemed to think there was something wrong with you if you preferred to work alone), my ideas were shouted down or ridiculed simply because I was the one who thought of them; sometimes, a more "popular" student would propose the exact same idea that I had suggested just minutes ago, and the other kids would embrace it. Often, these group projects ended up turning into episodes of taunting, rife with bitingly personal comments: one of many instances of emotional abuse at the hands of the other kids.  

It was turning into the worst school year of my life.

One Saturday or Sunday that year, I spent the morning crying in my room. I didn't want my parents to hear me because I felt that they blamed me whenever I was bullied at school, saying things like, "You joke around too much," or "You don't know how to interact with people" or "you bring it on yourself." I can't remember if my parents heard me crying and then forced it out of me, or if the amount of time I was in my room made them suspicious, or if I purposely cried more audibly because I was so tortured that actually wanted them to hear me because I needed to talk to someone. Whatever the case, I eventually ended up telling them about an incident that had happened on Friday. If I remember correctly, it was some taunting that had occurred during a group activity in science class.

"Why do kids do this to me?" I finally wailed.

Mom, aggressively pointing a scolding finger at me, shouted, "Because you don't even try to fit in. Believe it or not, appearance does matter. Look at you! You look like a 6th grader! Let me tell you something: you're not going to high school next year dressed like this!"

How was I dressed? I was wearing a pair of tan jeans and a green Bugs Bunny sweatshirt. Mom then pointed out a bleach stain on one of the pant legs that I had failed to notice. She yelled, "How could wear pants that have a stain on them?" When I told her that I hadn't noticed the stain, she said, "This is what girls your age notice!" I didn't know what to tell her about that. But her comment made me feel like there was something wrong with me.

Then, my dad started in on me about my hair, the fact that I hadn't worn it down for the past year unless forced to. Although not transgender, I felt somewhat dysphoric about my thick, wavy, Ashkenazi Jewish hair sending the message "pretty bombshell model" to other people, because that wasn't me. I was a tomboy, androgynous as hell, and that's how I was comfortable presenting. But my parents made it clear, not just that day, but several times, that my androgyny was immature and unacceptable and that they-- and society-- wanted the "pretty bombshell model".

After a protracted fight, I retreated to my room again to cry, feeling even worse after talking to my parents. Clearly, my initial instincts to try to hide the incident from them were founded. I didn't feel supported in personality or how I dressed. The interaction with them left me humiliated and feeling like a worthless excuse for a human being. I thought about my previous summer at Camp Negev, how I had been accepted for the first time. However, I had arrived under extreme pressure: I told myself that this was my last blank slate until college, that I had to fundamentally change things about my personality if I wanted to be accepted and have friends. 

Between the criticisms about my behavior and my clothing, my parents were demanding that I do something that is now referred to in the autism world as "masking", and it was what I had told myself I would have to do if I wanted to make friends at Camp Negev. It's a phenomenon that a lot of autistic adults-- especially autistic cis women-- have referenced in discussions about growing up with undiagnosed autism. What is masking? Well, it's exactly what it sounds like: inhibiting your natural inclinations in favor of ones that are more socially acceptable. The author of this article summed it up like this: "fitting in, in order to avoid being coddled, babied, ostracized, hated on, harassed, or bullied for being different."

Holy crap, does that hit home. 

I occasionally tried to mask, but it backfired spectacularly. If I stopped myself from telling an inappropriate joke or talking about some movie that only I was interested in, all it did was delay the inevitable and I would do both. That's not to say there isn't a time and place to talk about movies or tell inappropriate jokes, but I had been trained to think that any time I did these things I had committed some horrible, unforgivable moral failure, that I had violated the other person in egregious ways and that any anger or emotional abuse that they responded with was justified. 

I often commented that I had to think about everything before I said it. People who I told this to said that everybody has to do that. No. That's not fucking true. There's a difference between occasionally having to stop oneself from saying something that might not go over well and having to think about every goddamned thing before saying it. It caused severe anxiety in me that I am still feeling the aftermath of today. It was frustrating and painful trying to find a balance between being myself and being what I had to be in order to be accepted. Since I very rarely tried to mask, friends at camp often commented that I was one of the strongest people they knew. At home, my parents dismissed my strong sense of self as rigidness, stubbornness, and being set in my ways.

I am almost finished a book by Sarah Kurchak called I Overcame My Autism and All I Got Was this Lousy Anxiety Disorder. Kurchak succeeded in masking when she was young and, like many women who used masking as a strategy in their youth, suffers severe anxiety and trauma. Had my mother known this woman as a kid in the '90s, she probably would have seen the adjustments she made and said, "See? She knows how to take advice." Only fairly recently have she and Dad finally seen this sort of thing for what it is-- masking, which is ultimately detrimental to the mental health of autistic people.

In her book, Kurchak said something very relatable about the mindset that masking (or, in my case, attempting to mask and failing at it) leads us to:

[The aftermath of a mistake] follows the same pattern: I make a mistake. I react poorly to it. Before I can take the time to properly process what has happened, what it might mean and what I should do, my mind is already racing with worst-case scenarios. Then it gets stuck in a repetitive loop. Even if I do manage to recognize that my thought process is starting to spiral, there's nothing I can do to stop it at this point. It's like a broken record skipping over and over and over and over the same self-loathing sound bite.

It made me think about how in the summer of 1995 I had told myself that going to Camp Negev was my "last blank slate until college", as if who I was, was so wrong that I had to fundamentally change myself in order to deserve friends. I was fourteen years old, and back then it didn't even dawn on me how horrible it was for a young kid to have to think like that. But that was my reality back then, what society had taught me. Adults didn't even bat an eye about it. I even remember asking my shrink, who I have since dubbed Dr. Bonehead, "What if I mess up and I'm not able to make any friends?" He said, "Well, I guess it will be a disappointing summer." In response, I quipped sarcastically, "Boy, you're insightful."

The other day, I was telling Chuck, a counselor from my 1997 Israel trip (affiliated with Camp Negev) who I recently reconnected with and befriended, about how I had "spent the year in sober reflection" after that summer. Why had I been in sober reflection, let alone for an entire year? Because that summer, when I was sixteen, I had had a huge crush on Chuck and constantly followed him around like I was Pepe LePew. In addition, I had been dealing with unbelievable anxiety due to some issues with my parents that had escalated right before I left. On top of that, the fact that there were about 90 kids my age on the trip (as opposed to 20 kids my age or fewer at camp) was overwhelming, and I was also frustrated about the sudden overemphasis on hookup culture and substance use. I was having frequent meltdowns, which back then society dismissed as childish temper tantrums.

Between the stress from my parents, the crush, and the culture on the trip that contrasted sharply with camp, my anxiety was in the stratosphere. I was a loose cannon, my mood spun on a dime, and I even got into a physical fight with someone. These were all mistakes-- stupid mistakes-- to be sure, but why did I have to spend an entire goddamned YEAR feeling guilty about my behavior? Why did I eventually entertain the notion of finding all the email addresses for my counselors and contacting them, apologizing for being so difficult and letting them know that I was trying to change? Kids on that trip did a lot of stupid things because, well, they were teenagers. It's just that my behaviors were a different kind of stupid, but not necessarily worse. Hey, you know what? I wasn't malicious, and it wasn't like I was setting things on fire. And boys get into physical fights all the time; people see that as "normal". 

Wouldn't this have been a better way for me to contextualize the mistakes I had made that summer?:

But the reality was, throughout my teenage years and into my twenties I was expected to be in sober reflection about my behavior constantly, especially when I failed to mask, which was most of the time. Bottom line, people cannot live that way. And the fact that it's mostly cisgender women who try to mask their autism tells me something very damning about our culture (there may also be a biological component to this, but obviously it's not easy to tease out) and the way women are expect to be constantly nurturing, anticipating what other people need and practically having an orgasm while doing it. 

Remember those rubber masks you would put on every Halloween and how uncomfortable they were? This is that.

The difference, of course, was that you knew you were expected to take the masks off.

Growth vs. Change

As always, all names are pseudonyms...

Whoa, it's been 5 months since my last update! Well, a lot has been going on. For one thing, I'm almost finished the first draft of a novel that I hope to eventually publish. I am shooting for the end of the month (that is, in a week!) to have this draft finished. I've been trying on and off to write about this particular set of characters since the end of 1996, and it never got anywhere beyond a series of crappy and disjointed episodes. Well, this time it finally has, and I think I have a solid story in the works.

Now onto today's topic: growth vs. change. A couple weeks ago, I was talking on Zoom to Chuck, a counselor from my 1997 Israel trip with whom I reconnected last year. We have been chatting pretty regularly (usually once a month) since we reconnected at the beginning of the COVID-19 pandemic. I asked him if he remembered a particular time when the counselors led an "obscene sculpture contest" on the beach of a kibbutz we were staying at. He said he did, and I asked him whose idea it was. He admitted, "It might have been mine." Now that I think about it, I seem to recall that it might have been the idea of this other counselor who was a real smartass. But hardly the point. I laughed and said something like, "If only your kids knew. When you're a kid you like to think that your parents are these boring 'proper' people but you eventually learn that they did all the same ridiculous things that you did." Chuck laughed and said, "I really haven't changed since then. I'm still the same guy. It's just that now I'm a parent."

I was glad to hear somebody, anybody, say that. I reflexively cringe at phrases like, "People change" and "relationships change" especially when talking about someone who gets married and has kids. It's as if when someone gets married and has kids they're expected to be replaced by a pod person who has nothing to do with the person they once were. I associate these phrases with people having ditched me, sometimes inexplicably, including at least one time that involved ghosting. When I was a kid, my mom said "relationships change" and "people change" when I was in ninth grade and my "friends" caved into peer pressure and turned their backs on me. She said the same thing when I was 27 and Melanie, my best friend for more than half my life, ghosted me without explanation and didn't invite me to her wedding. Actually, she said it every single time a friendship came to a sudden end. These phrases carry horrible baggage for me, because the message I ended up getting was, "These people outgrew you. And their erratic actions were normal in response to someone like you."

Because the reality is that I haven't changed, and I told Chuck as much. And it's true: I still have the same interests as I did 23 1/2 years ago. I'm still irreverent. I'm still tomboyish/androgynous. Hell, I still think about a lot of things the same way as I did decades ago. Once, in 2015, I was telling someone a story about a conflict I had gotten into with my mother when I was in high school. Later, I found a school journal entry I had written right after the incident happened in 1998. The same points I made when defending my perspective in 2015 were all outlined in the journal entry, all with eerily similar wording. It didn't matter that 17 years had passed since the incident; I was still thinking about it in almost exactly the same way, right down to how I phrased things.

That isn't to say I haven't grown. I had a lot of issues in the summer of 1997 (and around then) but now they are largely under control. I had poor executive functioning in that I would say stupid things and regret them a nanosecond after they were out of my mouth (the "lacking a filter" issue common to people on the spectrum). I had extremely high anxiety and had a lot of meltdowns. Part of the issue was that back then autism was only used to describe people like the eponymous character in the 1988 film Rainman; I wasn't diagnosed until 2003. These issues have largely resolved with time, my growing understanding of the issues, and a whopping dose of SSRIs (which I've been on since 1999, the second half of my senior year of high school). I still have anxiety about certain things. I still have the occasional meltdown, but it's very rare and only in very specific circumstances. When it happens I am usually alone or dealing with my family. I have a good relationship with them, but the reality is we carry a lot of baggage and it sometimes comes to the surface and sets me off. As for the "filter", it usually does what it's supposed to, but I'm not perfect. I'd like to think that I've grown since then, and I believe I have.

"Oh, but see, isn't that change?" No, it isn't. Why? Because, my dear, what I described are adjustments, alterations to certain behaviors, not changes of who I am at my core. I'm still a smartass. I'm someone who will stand up on a chair in a restaurant and do the Pee-Wee dance when the song "Tequila" comes on. It's just that I'm more discriminating in terms of where I do these things; the "Tequila" incident was in a Manhattan restaurant with friends-- this sort of thing happens in public spaces in New York City quite a bit, so it's more acceptable there. I realize that I may be debating a semantic issue, but that doesn't mean that semantics are irrelevant. I'm older and wiser but, bottom line, I'm still me. 

So when should the word "change" be used instead of "growth"? I think when somebody's core persona changes. To use an extreme example, let's look at Frank Meeink, the former skinhead whose life loosely inspired the 1998 film, American History X. He was entrenched in an ideology that informed every aspect of his personality and his life. He even went to prison because he almost killed somebody. In prison, he found himself in sober reflection after interacting with black inmates on a regular basis. Today he is a changed man, and regularly educates people on the poison of racism and white supremacy.

I guess the word "change" also has more baggage with me, not just because of my mom's comments about people "changing" and relationships "changing", but also because over the years many people implored me to change, carrying the implication that there was something horribly defective about me: parents, teachers, peers, you name it. More then a few times when I had a social setback that was ultimately the result of an honest mistake and not rooted in maliciousness, someone said, "You could look at this as a positive opportunity to change."

"And my answer to that," to quote Bill Maher in one of his routines, "is fuck you."

And really, I was thinking about the issue of growth vs. change when I was in high school. My stance on it hasn't changed since then.

Why should it?

Lemons and Lemonade (or "The Silver Lining Around the Mushroom Cloud")

As always, names have been changed...
It's just about 5 months into this COVID-19 pandemic. Since then, Massachusetts, which has done a great job of containing the virus, has entered phase 3 of reopening. On July 5th, I took the subway (mask on, of course) for the first time since March, getting myself the hell out of Quincy and going to Cambridge to go swimming in an outdoor pool. The outdoor pools are open (at lower capacity), and so is the gym. While going to the pool at the gym or an outdoor public pool is not a risk-free activity, I feel it is one of the safer risks I can take because chlorine kills the virus. I've also recently gotten to see one of my friends who already had the virus in April. He had a high fever, which indicates a strong immune response, and thus some type of immunity developed in the end. My doctor confirmed that right now he likely has some immunity, though we don't know enough about COVID-19 to know how long it will last. So I felt comfortable seeing him. I've also extended my social circle a little and hung out with my cousins, who came for a visit from Providence.

This pandemic is frustrating to no end. Until there's a vaccine, it's hard to know what the future will hold, and I dread this winter when people will be forced inside and given more opportunities to spread the virus. Even now in the summer I feel a little anxiety of what's to come next. This is one of the most horrible things to have happened in The United States (maybe THE most horrible?), with more casualties than 9/11.

That said, it is also one of the best things that has happened to me. Before anybody decides to twist things around, reads the wrong thing into my statement, no, I am not saying how wonderful it is that we have a pandemic that has killed hundreds of thousands of people. Rather, I'm saying that there's a silver lining around this mushroom cloud, a lemons and lemonade kind of thing that's happened to me in its aftermath. For one thing, I am doing a lot of writing. I'm well into writing a novel. I've tried writing many different novels over the years, but have had structural problems and have found myself stuck after writing the beginning, or have ended up writing a crappy draft. This time is different. What is also great about developing this novel is that I'm writing with characters I came up with at the end of 1996, characters who I've tried over and over to get a story out of but have been unable to. Until now. I think I'm really going to do it this time.

Additionally, stuck in full quarantine in March, April, and May, my mind started to wander. I thought back to the summer of 1997. I remembered my group trip to Israel, where I had an obsessive, autistic-style crush on a counselor named Chuck, and how I chased him around like I was Pepe LePew. This severely disrupted my experience and left me embarrassed about my behavior for years. I have had a few brief, superficial communications with Chuck over the years (ICQ, email), and we've been on Facebook together since 2008. We never kept in touch in any meaningful sense of the term. But with my wandering mind, I decided to message him. We had a good conversation, and ended up Skyping-- twice.

During our first Skype chat, Chuck and I hit it off right away and had some interesting discussions-- it turns out we have quite a bit in common, including a shared interest in brain science. We had a few good laughs about the funny things that happened on the trip in the summer of 1997. We also talked very frankly about my embarrassing behavior. I said, "Yeah, I had a thing for you and I had the subtlety of a hand grenade about it. I was embarrassed about it for years." Chuck shrugged, laughed, and said, "You were a teenage girl. These things happen. I'd like to think I handled it well, but I'm sure sometimes I didn't." I told Chuck that I gave him a lot of credit, that while he didn't always handle it well, he did the best he could for a young guy working in an era where autism was virtually unheard of. Having this discussion with Chuck was very cathartic and gave me a lot of closure that I never really had about that rough period in my life. He lives nearby, and I look forward to meeting up with him, and I hope to also meet his wife and two kids. This, of course, will probably only happen after a vaccine is developed, or when Chuck is at least more comfortable expanding his social circle during the pandemic.

Chuck isn't the only person I've reconnected with. I reconnected with Jonas, my counselor at Camp Negev and friend and mentor throughout my teenage years. Oh yeah, and my first crush. Yeah, I tended to get crushes on counselors... wow, what a dork I was! Anyway, he and I had kind of a falling out in the spring of 2001, and I haven't seen him since then. Our communication was limited to the occasional email and Facebook comment. However, we cleared the air about what happened back in the day (which I really don't want to get into the details of right now). At first, Jonas was not sure it was a good idea to video chat, but a month later, after hearing me on an alumni section on a camp podcast, he changed his mind. A couple weeks ago, we talked on Zoom. We had some good laughs about camp memories, and we filled each other in on some of what we've been up to over the past 19 years. Jonas ended by saying, "Let's stay in touch." He lives thousands of miles away, but the next time he is in New York City visiting his in-laws (which I suspect will only happen after a vaccine is developed, so I think we're talking about at least a year), I will probably head down there to see him. I definitely look forward to meeting his kids (I already know his wife; she went to the same camp).

I also reconnected with Amelia, a close friend from my age group at Camp Negev. Like Chuck and Jonas, we had been on Facebook together for years but didn't have much communication. We had a nice Skype chat and, like in my chat with Jonas, we filled each other in on what we've been up to over the past several years. She lives in the south, so it'll be a while before I get to see her in real life. I hope she comes up to Boston at some point. Or, perhaps I'll go down there. We'll see. If nothing else, we're just about due for another Skype session.

In short, because of this pandemic, I've been writing like a madwoman and reconnecting with old friends (Jonas and Amelia) and acquaintances (Chuck-- now a friend? Not sure how he'd classify the relationship from Skype alone). This mushroom cloud has indeed had silver lining, and I've turned some lemons into lemonade.

With all the horror stories that have happened as a result of COVID-19, it's nice to be able to hear something positive. Let me know in the comments if you have similar "lemons and lemonade" stories that have happened as a result of this pandemic!

Shut Up and Listen

Thanks for coming! I'm gradually moving the blog to Substack. You can see this post there.

Things That People Didn't Get (or "And Fuck You for Saying So")

Note: As always, names changed to protect peoples' privacy.

Whew, it's been a while since my last post! Well, we're three months into social distancing, and a lot has changed. I'm now working at home, and my company just decided that this will be a permanent thing. Not thrilled about it, as I don't like being stuck home all day. I'd at least hoped that once things improved (even if in a couple years) we would be back in the office... but anyway... it is what it is.

Recently I've been thinking about things about me that people just didn't get when I was a kid, in that dark age known as the '90s. I've also been thinking about how people who barely knew me felt entitled to make objective pronouncements about certain experiences I had because, hey, I was the ultimate unreliable narrator, right (and yes, I'm being profoundly sarcastic)? I keep wishing I could go back in time and correct these people who made these comments and pronouncements and then conclude by telling them, "And fuck you for saying so."

Here are a few gems from my childhood:

1. Between the ages of 11 and 14, I went to a therapist who had no idea what autism was. Well, to be fair, in the '90s nobody knew about it. So instead of just being honest and saying he had no idea what was going on, at our last appointment he gave me an index card on which he'd hand written a "diagnosis": "Difficulty picking up on social cues and adjusting to new situations."
Okay, first of all, these are symptoms, not a diagnosis. Having difficulty picking up on social cues is, of course, a hallmark of autism. But back then an autism diagnosis wasn't even on the table. As for "adjusting to new situations"? That too is a sign of autism, but it's one I never had. I don't know where this assessment came from. Christ, even when I was a kid my parents commented that I was good at trying new things. And contrary to the stereotype of the autistic kid who gets upset when their routine is disrupted, nope, never an issue for me. And I would've been thrilled at the idea of going to a new school-- specifically, a small, private school-- because I was being emotionally abused by my peers.
And at the time of Dr. Bonehead's "diagnosis", I was getting ready to go to overnight camp for the first time. And guess whose idea it was? Mine. My parents didn't even suggest it. I had aged out of my day camp and decided to go to Camp Negev because my brother had gone there and loved it. So as far as having "difficulty... adjusting to new situations"? No, I don't. I never did. 

 And fuck you for saying so.

Backstory for the next 3 items:

I went to Camp Negev for 2 wonderful summers, in 1995 and 1996. 1995 was difficult in the beginning because after years of emotional abuse at school I was a bit guarded and on edge. I wasn't homesick, I wasn't upset that my routine had changed, or anything else that people reading this who are familiar with autism stereotypes are probably thinking about. No. It was because I was terrified that I was going to be emotionally abused again. Fortunately, my counselor, Jonas, reached out to help me become more relaxed, and he was a great friend and mentor for a few years. If not for him, I wouldn't have begged to stay second session, let alone come back in 1996.

In 1997, I went on a summer trip to Israel, one associated with Camp Negev. There, I developed an obsessive crush on Chuck, one of my counselors. I had a really difficult time because this obsession disrupted my summer (obsessive crushes are very common for people on the autism spectrum). My mind was all over the map, my mood swung at the slightest provocation, and my behaviors were erratic. I spent the year in sober reflection, but the damage had been done. I came back to Camp Negev in 1998 for the C.I.T. program, but they wouldn't let  me work with kids until second session because of "concerns" based on my Israel trip evaluation.

Fellow C.I.T.s commented that they'd seen significant growth in me and thought that I wasn't given enough credit. I, like other C.I.T.s, noticed that a lot of counselors were more concerned about smoking pot and engaging in the fraternity culture of the staff at Camp Negev than being good counselors. There was an alarming lack of responsibility when it came to the kids. I picked up a lot of the slack but, like many people on the spectrum, wasn't given credit for it. As is also textbook for people on the spectrum, an honest mistake-- such as saying, "Oh shit!" when not realizing that an eight-year-old kid is standing behind me-- was seen as a major infraction. Meanwhile, leaving kids alone in their cabins so they could go to the lounge and smoke weed was perfectly acceptable. The stress caused by the injustice eventually took its toll. I had two meltdowns during that summer. It was a significant improvement from the Israel trip, but these meltdowns proved to be the nail in the coffin for a future as a counselor at Camp Negev.

2. At camp when my counselors broke the news to me that I wasn't going to be able to work with kids because of their "concerns", my counselor, David, told me, "You're going to have to prove that you can change." No, it wasn't, "These are things that you have to work on", but rather "you need to change" because, hey, who I am at my core is wrong, right? This was just one of many times all summer when he was short, rude, and nasty to me. Telling someone that they need to change instead of working on some things is a really cruel, callous thing to say.

And fuck you for saying so. 

3. A couple months after camp, I wanted to apply for the gap-year Israel trip. Unfortunately, with my application I received a cover letter that essentially told me that they had "reservations". One of the reservations was that they thought I wouldn't be able to work in groups and that the "unfamiliar settings" would be a problem for me. I called the central office and asked for my C.I.T. evaluation. As I predicted, it cited inconsequential things that I did wrong and commented, "Could not be dealt with on a level that was appropriate for the C.I.T. program."

Um, wow? First of all, with all the pressure I was under that summer, I would like to see anybody not blow up at some point. Second, there is very little doubt in my mind that David wrote the evaluation without the help of my other counselor,  a wonderful person who had a more nuanced view of the summer. And why the hell was there this "unfamiliar situations" thing thrown in again? Once again, going to Camp Negev was my idea. Going to Israel was my idea. And I wanted to go back to Israel for the gap year program. A friendly reminder, I have never had issues with being in "unfamiliar settings".

And fuck you for saying so.

4. At a winter 1998 reunion, I confronted David about my evaluation. I talked about all the good things that I had done that I wasn't given credit for that summer and how lots of counselors got away with egregious inappropriateness.  David had the audacity to tell me that I "did not have a good summer", citing the two meltdowns (which, back then, people dismissed as childish temper tantrums instead of the end result of intense, complex emotions). Um, actually, yes I did have a good summer. Did I get frustrated at times? Yes. But life isn't black and white. I generally had a good time that summer. But oh, no, David told me that not only did I not have a good summer then, but that I didn't have a good summer in 1995 or 1996. David wasn't even my counselor those two years, so it wasn't like he had spent any time with me. This is just one of many times when someone in my childhood told me that how I felt about an experience I had was objectively wrong. Telling me that I didn't have a good summer when I felt that I did was a lousy, dismissive, invalidating thing to say.

And fuck you for saying so. 

5. When I was in 9th grade, I stormed out of class one day because my former friends-turned-enemies had been bullying me for the millionth time. A student teacher had been supervising the class, and as I walked through the hallway, I ran into my regular teacher. He took one look at me and shook his head. He said, "Every day with you it's the same thing. You can't handle your problems and you end up crying. Go to guidance."
I couldn't handle my problems? I was tired of being abused and I removed myself from the situation. How is that not handling my problems? And let's not forget the problems that the other kids had where they felt it was okay to bully me. Or was the fact that I was constantly bullied an indicator that I was the problem, not the other kids? 

When somebody is taking care of themselves after endless torment, that is not reflective of their inability to handle their problems.

And fuck you for saying so.

  

November 13, 1998

Names and places are changed to protect the privacy of those involved. 

I remember a lot of dates, some of them silly-- like the date I saw a particular movie for the first time-- and some of them significant-- like the date that a pet died. I also remember a lot of dates in which traumatic events happened, and I don't mean the types of traumatic events that everybody goes through, such as the death of a loved one. I'm talking about the type of trauma that seems to be unique to people with Asperger's Syndrome: social trauma.

Friday, November 13th, 1998, was such a date. And no, I'm not attributing significance to the fact that this particular event in question happened on Friday the 13th. I just happened to think about it this year because 2015's calendar corresponds to 1998's calendar. I remember this day so clearly, perhaps a little too clearly.

I recall that Dad drove me to school that morning. It was one of those days where I had do some presentation or other that included props that were too large and cumbersome to take on the school bus. As Dad drove up Route 611 toward Doylestown, he and I both looked out the window at the drive-in theater, one of the last in the country. It was about to be torn down to make way for a new strip mall.

"Tonight's the last night that it's going to be open," said Dad. "I think they're showing Grease."

"Can we go tonight?" I asked. I had no interest in Grease, but I had never been to a drive-in theater.

"Maybe," said Dad.

But it didn't happen. I couldn't even think about going to see a movie that night. I came home from school that day, checking the mailbox for the ten-millionth time to see if my application for the post-high-school-yearlong Israel trip, affiliated with Camp Negev, had arrived. Finally, I opened the mailbox to see a thick envelope. I knew that everybody else in my age group at camp had already received an application, but when I hadn't, I called the central office in New York City. I was already suspicious that somebody in authority had deliberately not sent me an application, but my parents also reminded me that the organization affiliated with Camp Negev was poorly managed: it could have been a simple oversight, and nothing more.

But a few minutes later I learned that this was not the case: I stepped inside the house and opened the envelope. On top of the application was a cover letter. (I actually used to have it memorized, and here I have reconstructed it to the best of my ability):

November 10^th, 1998

Dear Julie:

Thank you for your interest in the [name of Israel program] program. We know that you have been very involved in the movement and have spent many rewarding summers at Negev. You are welcome to apply, but [name of Israel program] is an intense and demanding program, and we as an executive committee felt it necessary to include a letter explaining our reservations.

[Name of Israel program] involves working in intense group situations in unfamiliar settings, and we are worried that such situations, particularly those involving group dynamics, could cause difficulty for you.

Best Wishes,

[names of executive staff]

I shouted, "What the fuck does that even mean?" even though there was nobody around to hear me. "How could they do this to me? How could they fucking do this to me?" My dog came into the room, and I crouched on the floor, crying. My dog, a yellow Lab, always showed great empathy. I pulled her to me, and she burrowed her head into my belly, which is something she often did when showing affection, particularly if I was upset. I held her and cried on her, but it wasn't enough. I wanted my friend, mentor, first crush, and camp counselor from my first year at camp (1995), Jonas, to be there and help me, to get me some answers, to do something. But he wasn't. He was in Israel with his girlfriend, supervising the current yearlong program.

It seemed that this nightmare would never end. I had two wonderful years at Camp Negev in 1995 and 1996. Then I went on the summer Israel trip in 1997 where I had an uncontrollable crush on a counselor, Chuck. It significantly interfered with my summer experience and, deeply embarrassed by it, I vowed it would never happen again. I recall that I tried reminding myself that experiencing a crush is merely a manifestation of the instinct to reproduce, and the drug-like state that it puts you in is merely that-- drug-like. I said to myself, "Remember, all you're experiencing is a chemical reaction."

A very powerful chemical reaction.

Summer 1998, back at Camp Negev for the CIT program, it happened again. I developed a crush on Omri, one of the Israeli counselors. Prepared for the possibility of falling for someone else, as much as I did not want it to happen, I set up very strict protocol, with assiduous controls  to prevent it from getting out of hand. But all it did was delay Omri figuring it out, getting freaked out about it, and my inevitable blowup toward the end of the summer. Overall, I had a fun summer (I tend to try to look on the positive side of things), but between the crush on Omri and the fact that I wasn't allowed to work with kids until second session, there was a lot of stress. The overall message that I received from the counselors was, "You made your bed, now sleep in it. Learn to deal with your problems." When I told this story to a therapist who I saw during my senior year of high school, he said, "How did they expect you to work under that kind of pressure?" A variety of therapists I saw over the years have expressed similar sentiments.

How in the world could I get anybody to understand that I was trying to control myself, that the outbursts that they saw were the end result of me denying my own emotions so that I would look "mature"? And what about the fact that I wasn't allowed to be irreverent at all, as it was "inappropriate", but other people at camp got away with appalling, egregious forms of inappropriateness, went on the yearlong Israel program and got hired as counselors year after year?

I heard the garage door open. Mom was home. I didn't know how I was going to tell her this. I had kept my mouth shut over the past few years about problems whenever possible because it always came back to her yelling at me for my acting like and dressing like I had a penis (sorry, even as a kid I felt that that's really what imploring me to "act/dress like a girl" came down to).

I overheard Mom talking with some teacher friend. I knew I wouldn't be able to handle myself in front of them, so before they could get through the door I went upstairs to check my email and see if anybody was on AOL Instant Messenger. No emails from Jonas, no camp friends or my friend from Philadelphia, Jenna, on AIM. But an hour passed, and Mom's friend was still there. There they were, downstairs, shooting the shit because they were normal people who took their social lives for granted. Just overhearing them made me want to put my fist through something.

Finally, when I calmed down somewhat, I went downstairs. I really shouldn't have: in my state of mind, trying to once again contain my rage, I had to go through the whole, "This is my daughter, Julie, Julie this is my friend [name here]"- "Hi, Julie, nice to meet you. Where do you go to school?" - etc. social niceties ritual. Reluctantly, I sat down and watched Mom and Mrs. Normal-Middle-Aged-Teacher eat cookies and drink tea and do all these Normal things as I tried to squash the surge of adrenaline that was inexorably building in me and hijacking my amygdala. Finally, Mom asked, "How was school?" It was fine. "Did your application come today?" I nodded. "Mom asked, 'Is everything OK?'" I leveled Mom a gaze that I hoped communicated, "Get that fucking woman out of here now." About fifteen minutes later, the woman left.

As soon as the woman was gone, Mom took one look at me and asked, "What's wrong?"

"This!" I exploded, shoving the cover letter in Mom's face.

Mom's face fell after she read the letter. She reached out to hug me, but I backed away. I was never big on hugs, and to me it always seemed like a pretentious way of addressing an issue. Years later, when I learned about Asperger's Syndrome, I found out that this is a very typical Aspie attitude. "No!" I snapped. "I don't want a hug! It's not going to help anything!"

"But it's good for you…" Mom pleaded.

I shook my head again. "Don't take it personally," I muttered. "It's just… the way I am." But how the hell could I have even explained that, not yet having the vocabulary for what I was?

Mom then suggested I call the central office and get an explanation. I don't know how I did it, but I managed to flip a switch in my head and calm down enough to make the phone call. I told the woman who answered who I was, and I asked her to do something I knew she wasn't allowed to do (but I hoped she would do anyway): I asked her to read me my CIT evaluation.

"Let's see…" said the woman. "It seems that you talked about… Satan… in front of the kids."

I was floored, but did my best to keep my tone level: "What? I had my dumb jokes with the other CITs, but I would never have made such jokes in front of the kids."

At least not on purpose. It was very possible I had made a Satan joke while not knowing a kid was standing behind me. And let's not forget that Omri had a similar sense of humor to me, and I guess because of his penis it was okay for him to make jokes about Satan, which he had apparently been doing at camp since the previous summer. Today I still have a photo of him dressed up as Satan with a "666" taped across his chest.

"What else?" I asked.

"Let's see… it says, 'Julie stomped out of the dining room when everyone else left and she thought they purposely left her behind. She thinks that people are out to get her.'"

"What? That did not happen!" I honestly had no idea what she was talking about. I racked my brain, trying to think of what the statement was referring to. But nothing came to mind. I'm sure my parents would have said, "Maybe you did it and just don't realize it." That was one of their typical responses to accusations leveled against me. It was so frustrating.

"Oh, maybe it was from another year," the woman said.

From another year? They wrote something that I had done during a previous year as if it had happened this year? I might have done it in 1995 when I first got there and truly was paranoid-- but years of having been bullied at school conditioned me that way. To toss in an incident from years past as if it had happened just months ago seemed like a sneaky, underhanded move to me.

"Could not be dealt with on a level that was appropriate for the CIT program."

Yes, another blanket statement. No elaboration.

"Did they say anything good?" I asked.

"Julie painted rocks for each of the bunks to have outside their doors."

"That's it?" I asked.

"Yeah," said the woman.

"What about my evaluation for the summer Israel trip?" I asked.

She searched but couldn't find it. Maybe it was for the best. Even today I'm not sure I want to know what was on it. I still cringe at some of the out-in-left-field stuff I said and did that summer.

I got off the phone and broke down again. I told Mom an abridged version of what the woman said. I didn't mention the Satan jokes-- I knew that she would bring up my lack of a penis for the joke's inappropriateness-- and I sure as hell wasn't going to tell her about the "stomping out of the dining room", which I didn't even remember doing, at least not that summer. I would have just gotten the standard lecture about how I can't blow up like that. So I simply told her that the woman told me that I constantly said and did inappropriate things in front of the kids.

I told Mom about the time that I came to one of the cabins during a movie night to find a little girl in there, crying, because the movie being shown (Mission Impossible) was rated PG-13 and she wasn't allowed to see PG-13 movies. I spent the evening with her playing cards so that she'd have something to do. That didn't make my evaluation. Nor did, "The younger kids really liked her and often followed her around." And what about the number of kids who felt that they could come to me if something was wrong, because they felt I would understand? Nope. Not newsworthy.

And then there was the time I was sitting in on a meeting with the staff of the age group I eventually was assigned to second session. Despite the fact that there were kids in the next room who could probably hear what we were saying, the staff were trash-talking an eleven-year-old kid with four-doses-of-Ritalin-per-day ADHD. They said that he was a hopeless case and that they didn't like him. I stood up for the kid and told the counselors that it wasn't right to make condemnations like that, especially about someone half their age. I explained that the kid's brain was hardwired differently and that he couldn't help a lot of what he did. The counselors' reaction? They laughed it off. Needless to say, standing up for the underdog didn't make it to my evaluation.

What about the counselors' evaluations? Did "Leaves kids alone in cabins" turn up on the evaluations of the many rogue counselors who did just that? Actually, leaving kids alone in cabins-- while going to the staff lounge to smoke pot-- was common practice. Nobody was ever called out for that. Nor was Omri called out for the time that he tossed a butcher knife into the sink when I was standing over it. Despite the fact that I had had a crush on him (he was very nice and helpful to me in the beginning of the summer when I wasn't allowed to work with kids), I had enough presence of mind to get in his face and firmly tell him never to do something like that again, that he could have hurt me. He had shrugged it off, saying he wouldn't have hit me, that his aim was excellent. And I'm sure it was. He was fresh out of the Israeli army. But it apparently didn't cross his mind that I could have suddenly moved into the path of the knife.

When I talked about these injustices with Dad later that evening, he put it succinctly: "Julie's getting crapped on for her little infringements while everyone else is getting away with murder."

At Mom's urging, I wrote a letter to the executive committee, telling them my side of the story. I finished a draft of a six-page-letter just before dinner. After dinner, I held up a piece of blank paper and said to my parents, "This is my reputation. Watch what happens: Telling a stupid joke that nobody gets." I ripped off a corner of the paper. "Accidentally saying a bad word in front of a kid who I don't even know is standing behind me." Off came another corner. "Having a bad day and not being able to keep a straight face." Rip. I silently added to myself, "Having crushes that I can't control." Silent rip. Aloud, I continued, "Being friends with the wrong people." Rip. And by the time I was done, there was no paper left.

And yes, someone on staff had once expressed concern about who I was friends with-- that the kids in my age group that I had the best relationships with were deemed "not mature enough". My two best friends had issues of their own and were a little unusual, which is probably why we understood each other. In retrospect, one girl that I was good friends with probably had Asperger's Syndrome-- she talked about horses almost constantly and missed tons of social cues that even I caught (and meanwhile she caught cues that I missed-- go figure). The other one-- a guy who had taken on a new name because he didn't like the one his parents had given him-- was bipolar, slightly effeminate, and got incredibly upset if people called him by his birth name and if somebody tried to take a picture of him (strangely enough, none of these quirks was seen as something to prevent him from working with kids). 

That was seventeen years ago, and times have changed drastically. I often think that the 1990s were to Aspies as what the 1950s were to gay people: the final darkness before dawn. We are now living in an more enlightened era, one in which teachers, counselors, etc. are being taught to understand different issues that kids may have.

This date that I remember so vividly is a perfect illustration of what kids with Asperger's often go through, especially if they grew up before Asperger's was even a known condition. It is practically textbook that neurotypical people can get away with outlandish behavior while people with Asperger's get called out for minor infractions. My shrink has told me she thinks it's because others notice that something is "off" about Aspies and they are thus more likely to notice such infractions, and be less likely to notice the good, altruistic things that they do.

The organization that my camp is a part of was run by people under twenty-five, as it's considered a "youth movement". People aged 21, 22, 23 were making huge decisions about me. Somebody must have eventually realized that people that age are too young and inexperienced to run a movement themselves, so today retired teachers are in charge of the youth leaders, as mentors of sorts. And today the camp is well-supervised, and drugs aren't tolerated on staff. If I were born in 1998 and gone to the CIT program in 2015 or 2016, had they thought I wasn't ready for kids they would have given me something constructive to do. I went back to Negev for an alumni day in 2011. I told one of the counselors my story and we talked about how much camp-- and the world-- has changed since the '90s. She said that there are sometimes kids who aren't ready to be CITs. But they are not shamed and shunned like I was. Instead, they are given something else constructive to do, such as helping write the blog or take photos for it, or working in the kitchen. Today, the staff wouldn't have given me the "You've made your bed, now sleep in it" attitude. Parents today of a kid receiving such treatment would be out for blood. As for the year-long Israel trip? Some accommodations would have likely been made.

Although I have since accepted my past, it's not so easy to put it behind me. I will never be 18 again and will never have the opportunity to spend a year abroad with other post-highschool kids. You only get one shot at life, and it often sucks when you realize that you were born in the wrong era, an era in which your own parents demand that you change, unwittingly implying that who you are at your core is wrong. Even today I still have dreams about this time in my life, and sometimes I just want to break something when I think about the opportunities my peers had but I didn't, all because of the way nature made me.

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.