Sober Reflection About Sober Reflection

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Is It Ableism? Part 7: Infantilization

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Is It Ableism? Part 1: Revisiting the Dark Ages

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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.

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!

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.

  

Regrets... or Not?

In the summer of 1991, when I was 10, my then-13-year-old brother went to Camp Negev, a secular Jewish overnight camp. My mother asked me if I would like to go for a special two-week session offered to the youngest kids, and I declined. No, I was not going to go. That would mean interrupting my third summer at Art Camp (not its real name; for simplicity I will just call it that), an artistic enrichment program held for six weeks each summer at a small Quaker school.

Wood shop was my favorite class at Art Camp, and 1991 was the summer in which I started an annual tradition of creating and implementing an ambitious woodworking project. Most other kids just copied the projects that were on the display shelves, but I drew elaborate plans on graph paper from scratch. The counselors (most of whom were actually teachers from the school) always encouraged my projects, never once telling me, "You can't do that; it's too hard."

The summer of 1994 was my sixth and final summer at Art Camp. As I was entering 8th grade and just a few months away from my fourteenth birthday, it was the last year I was young enough to go to this camp as a camper. I decided then that I was going to do the most ambitious project of them all-- a model Pitcairn autogyro. Through lots of bumps and hurdles, I made the airplane over the course of the summer. I was very proud, and was glad that my final year at Art Camp had ended on such a high note.

However, I was very sad that I was too old for Art Camp and that I had to move on. I would miss wood shop-- and the variety of other projects I got to do at camp. In true Asperger's fashion, I approached each project in each class (except dance-- I'm a total klutz with anything that involves full-body coordination) with a single-minded focus. If I made any friends, great. If not, I didn't care. In fact, it rarely crossed my mind to try to make friends. I occasionally befriended a couple other kids, but first and foremost I was at camp to work.

The reason I finally decided to go to Camp Negev in 1995 was simply this: I had to have something to do in the summer, and I knew that my brother had loved the camp in the three years he went. At least in going there I would have some point of reference in terms someone I knew having loved it. The only other alternative, it seemed, was to spend the summer killing time with  flaky people I weren't even sure were my friends. My biggest fear about camp was that the kids would be just like the kids at school: I was sure that the girls in particular would giggle to each other, and then when I'd ask what was funny, they'd giggle again and say, "Nothing"; I was sure the girls would put makeup in the morning and constantly complain about how fat they were even if they were skinnier than Gandhi on a hunger strike; I was sure I would be bullied (although I didn't call it that back then, because I was convinced I deserved all the abuse I had received), and just as badly as I was in school.

None of these things happened-- like Art Camp, the camp philosophy emphasizes individuality-- but the beginning was rough because the aforementioned scenarios were all I had known. It wasn't until a counselor, Jonas, reached out to me and became my friend and mentor (for the next six years, no less) that I was able to be happy and comfortable at my new camp. I realize that if not for his intervention, I probably would not have returned the following summer. I not only did return the following summer (and also went on the post-11th grade Israel trip and came back for the post-12th-grade CIT program), but I also felt extreme regret that I had waited so long to go to give Camp Negev a try. I eventually became jealous of the other kids who had been coming since 1991; kids whose faces showed up in group photos; kids who would say, "Remember in '92 when this happened? Or in '94 when we did that?" and I was not be able to share these memories and laughs with them.

In fact, what I had really regretted about not coming to Camp Negev when I first was offered the opportunity was why: I was in love with the projects at Art Camp. It had nothing to do with the people; as I have said, friends hadn't been my priority there, but instead everything to do with the intense projects that I tackled there. I felt silly for that. After all, I realized, when people come back to any camp year after year, it's because of the bonds they formed with other kids, not because of things they got to make. At one point I began to wonder what was wrong with me that this fundamental point had never been obvious to me. For several years, I truly regretted the decision I had made to miss Camp Negev in 1991… and 1992, and 1993, and 1994.

But today? I don't regret my decision. Not in the slightest. I am still a bit envious of my campmates who had gone there since 1991, but I realize that doing so would have been a huge mistake on my part. I grew up in an era where this "weird thing" about me didn't have a word. Jonas hadn't started working at Camp Negev that summer (like me, 1995 was his first year) and thus wouldn't have been able to provide the crucial intervention I needed to help me feel comfortable socially and emotionally. And without the accommodations that would be made for today's campers, I realize how fantastically lucky I was to have a counselor like Jonas at all. I fear that had I gone in 1991, I would have had the same prejudices and fears as in 1995, but nobody would have been able to help me. I would have hated camp and never come back.

With 20/20 hindsight, I understand of course that my single-minded focus on projects instead of people was a blatant manifestation of Asperger's Syndrome. I don't regret this single-minded focus, and I do regret that I don't have it nearly as much as I used to-- I got more done in those days. When I scoffed at my younger self for having been this way, I was, of course, accepting societal norms about what is supposed to be important to people, and what summer camp is supposed to be. I have absolutely no regrets for going to Art Camp until 1994; I simply wasn't emotionally or psychologically ready for overnight camp, and even when I was, Jonas was a huge piece in this social awakening that I finally experienced. I am glad that I got to make my Pitcairn Autogyro in 1994, and it still is one of my fondest memories. Camp Negev may have been important for my social development, but Art Camp was important for developing my artistic skills and visual-spatial-reasoning skills, all of which mattered to me deeply.

I have wondered, however: what if I were growing up today in an era in which there is better education for camp counselors who might have to look after young kids with Asperger's? It would have been safer to send me to Camp Negev, and most likely I would have gone, and likely have come back year after year. But then because of these "interventions", I wouldn't have had the opportunity to make something like my Pitcairn Autogyro (unless, of course, my parents had found an overnight arts camp for me, which is definitely possible). I would have responded to the "interventions" and made sure to spend more time with people than I did. And would it been at the expense of the personal projects I was so passionate about? I don't know. But this is often a question that plagues me: At what cost is intervention for kids on the autism spectrum? This cost-benefit analysis is something I have wondered about for a few years now. I don't have the answer.

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.

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.

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.