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.

I Hate Money: Part 2

As I illustrated in Part I, people are often judged by how much money they make: If you're 35 and aren't financially independent, you're lazy; if you mention having Asperger's Syndrome, you're just using it as an excuse; ultimately, there is some low-hanging fruit that you've somehow missed.

Recently, I had another horrible situation involving money. I took my cat to the vet for his long-overdue annual checkup (on my parents' dime, no less), and the vet said she was concerned about my cat's teeth. He had gingivitis, and she felt that X-rays and maybe even extractions were in order. She quoted me at $850. I told her I'd see what I could do. My cat hadn't gotten any dental care in four years because I couldn't afford it, and he's had issues practically from day one. I didn't think I could ask my parents for the money-- one time when I asked for money for a dental cleaning for my cat, my parents got upset at me (I know now that they didn't realize that this was a chronic issue for my cat; they'd thought I just wanted to brush his teeth). I was very concerned because I know that dental problems can affect other systems, and even increase the risk of a heart attack.

I went home and looked around my apartment for anything I could sell to raise the money. I had a ton of DVDs, and if they would sell on eBay, I could raise the money. But the keyword is if. Very few people buy DVDs on eBay. Why do that when you can just buy it for less on iTunes or stream it for free on Netflix? I then decided to do something I've seen people on Facebook do a million times-- set up a GoFundMe. I set the cap at $700, with the intention of paying the final $150 myself-- I felt that I should take on as much of the financial burden as I could. I thought that at best two or three people would donate, and that when the donations didn't add up, I'd end up refunding them. But to my great surprise, $100 came in in one day. So I posted the link to the GoFundMe on my Facebook page twice a day every day. I set it, however, so that my mother and brother (who are both on Facebook) couldn't see it. I felt that this fundraiser just needed to be done, and I didn't want to deal with what I thought would be the standard lecture of, "You don't do that! It makes you look irresponsible!" or "Just posting it on Facebook will make people feel pressured!" or even, "What if potential employers stumble upon this when they Google your name? What would they think that says about you?"

The money came in, slowly but surely, but it wasn't without any backlash. I asked a few people in direct messages-- in most cases during a conversation, rather than a sudden message from me with the query-- and I was careful as to how I phrased it. Rather than saying, "Can you donate to this?" or something to that effect, I said, "Would you be interested in helping me with this? If not, that's OK." One friend said, "I wouldn't have a cat that I couldn't afford." Then she got upset and said that her parents would never pay her rent like mine do for me and that they hold her to higher standards. Because life has been so shitty for me for the past three years, that hit me pretty hard. The implication seemed to be that I was a spoiled kid from rich parents who just gave her money whenever she wanted it, and didn't expect her to pull her weight. This is absolutely not the case. Ultimately, my friend and I talked it out, and she apologized profusely, saying that she'd been having some problems of her own lately and that I'd caught her at a bad time. She eventually donated. Although my friend said what she said when she was having a bad moment (it happens to us all; she is a good friend and very kind otherwise), it made me wonder if what she seemed to imply was true. It sucks to have to think that way.

I also run a Meetup group. I sent an email to the group telling them about the GoFundMe. I started it with, "I know this is a bit unorthodox, but..." and, of course, said, "If you would rather not donate, that's OK too." I sent this message three times in the period of a month. On the third time, a woman responded by reading me the riot act, using loaded words like "egregious", chastising me for my "brazen gall", saying that she was "flabbergasted by [my] audacity", and that I was "abusing [my] role as a leader." Then she said that she went to my GoFundMe page and was suspicious by how many people from the Meetup had donated (it was 4 people out of 22 total donors). When I finally told her I had Asperger's and, in the heat of the moment, said, "Clearly my social skills and judgment are shitty", she said, "Excuses, excuses." Thankfully, she left the group.

I then emailed someone who'd just donated literally moments before to make sure she hadn't felt pressured. She said that she hadn't felt pressured, and then said that she donated because she doesn't like to see animals suffering. Then she went on to tell me that I was irresponsible for not having pet insurance (which, incidentally, is incredibly expensive).

For the record, I hate asking people for money. I even hate asking my parents for money. I did this GoFundMe because I didn't know what else to do, and I didn't want to have to worry about my cat having some long-term health problem that would cost thousands of dollars or that would kill him. I would never have asked for donations to, say, pay off a credit card or to buy the latest iPhone. The irony is, that when I finally did tell my parents, their response was, "Why didn't you just come to us?" As I mentioned before, I thought that it would upset them. I'm glad to say that I was wrong. I'm also glad to say that they thought there was nothing wrong with me doing a fundraiser: If people don't want to donate, they don't donate. My parents, if anything, were upset at the people who judged me and spoke to me with self-righteous indignation.

As you can see in this blog post and its predecessor, I have been judged in a variety of ways for not being financially independent. In most cases, the other people didn't know what I have been going through, except in the case of Chris, who knew but wrote it off as me not trying. I have this to say: Walk a mile in my shoes before making such harsh judgments.

As for my cat, he had the procedure yesterday. He had four extractions. A frivolous fundraiser, indeed!

I Hate Money: Part I

Whoa! Sorry for the long lapse in posts. Life has been pretty hectic and stressful lately. That said, I hate money.

Yes, I hate money. I hate how much money dominates our day-to-day decisions. I hate the fact that I don't have enough of it to make ideal day-to-day decisions. But more than anything, I hate how people are judged by how much of it they have. And for the past two months in particular, I've been under a lot of stress related to such judgments.

 I have a Master's Degree and I'm lucky if I can land a job that pays $13.00 per hour. Welcome to the world of living with being a woman who has Asperger's Syndrome. Right now I'm taking web development classes in hopes of becoming a web developer and finally, finally, FINALLY becoming financially independent, but it's been a real uphill climb. In the meantime, I had a falling out with an old friend, and a lot of it had to do with judgments based on how much money I make.

To be fair, the "friend", who I'll call Chris, was never someone I felt close to. I only saw him about once a year (he lives in Connecticut) and I found I could only take him in small doses. He, too, is on the autism spectrum, and the honest truth is that I generally don't get along with autistic men. In general, for reasons that are not yet understood (one hypothesis has to do with prenatal testosterone levels), autistic women and men present very differently, almost as if they're speaking two profoundly different languages. I just don't find that I can be on the same wavelength as them. But that's just me, and I hope this isn't perceived as a judgment call about autistic guys. Anyway, about Chris: He is a web developer, and he most likely makes a ton of money. I don't know how much, but obviously enough that he has no problem sneering at those who don't.

Last year on Facebook, Chris said that those who have Obamacare -- knowing full well that I have it -- are lazy. Then he said nothing while one of his friends chewed me out and told me to stop sucking Uncle Sam's teat. After the whole thing blew over, I decided to write it off as him being autistic (he is much, much more profoundly autistic than I am) and not realizing how he came across. But the personally insulting posts-- while not necessarily directed at me-- went on. I began to seriously consider unfriending Chris in every sense of the word when he posted a status that said something like, "I'm sorry I've ever heard of autism. I know at least three people who use it as an excuse for not being successful." I called him on it, reminding him that both of us went to art school (which is where we met) and this aspect threw a monkey wrench into things for me. Then he asked me, "Well why was your friend Flora successful?" (Flora is a friend who has had a very successful animation career). Then he asked me about a film that I had started several years ago but "refused to finish." His words, not mine.

Once again, it blew over. But I was extraordinarily upset that Chris, who used to be the kind of person who'd give the shirt off his back for anyone who needed it, was judging me for not being financially stable like he is. He's even left posts that he thinks people who can't afford health care should be left to die. In short, he has become a right-wing libertarian, and is starting to sound like Donald Trump.

The straw that broke the camel's back came about a month ago when Chris posted on Facebook, "Why do people with Asperger's seem like they are either the smartest people in the room or they are not only annoying and obsessive (while failing at life in so many ways), but actually love being that way?" Again, I don't think he was necessarily directing that at me, but it hit me pretty hard. He knows I've been struggling for a very long time, and he knows that I feel like a failure. Once again, I called him out on it. He essentially shrugged it off. I didn't unfriend him on a whim; I sat on it a week before doing so. I think I'm pretty reasonable; if he contacted me to try to work it out, I would be willing to listen. But he hasn't done so, and I feel that I'm well-rid of him. And I have no reason to feel guilty. He has plenty of friends, and is even engaged. Who knows, maybe this woman has been a bug in his ear.

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.

How IQ Tests Hurt Kids with Asperger's Syndrome

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

My IQ test had also said:

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

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

And the final product:

The Dreams Keep Coming

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

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

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

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

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

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

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

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

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

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

The Butterfly Effect

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

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

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

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

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

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

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

Not quite.

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

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

Oh, so Camp Negev has a renowned sports program?

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

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

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

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

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

This has what to do with exercise?

Patience, patience! 

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

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

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

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

The End. 

Or not.

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

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

So let's go over this Butterfly Effect:

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

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

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

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

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