Sunday, November 15, 2015

November 13, 1998

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-year-long Israel trip, affiliated with Camp Negev, had arrived. Finally, I opened the mailbox to see a thick envelope. I had known 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 had already been suspicious that somebody in authority had deliberately not sent me an application, but my parents had 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 once had it memorized, and have since reconstructed it to the best of my ability):

November 10th, 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 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, Charlie. It had significantly interfered with my summer experience, and I vowed it would never happen again. I recall that I had 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 had 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 got a crush on Omri, one of the Israeli counselors. I had set up very strict protocol, with assiduous controls  to prevent myself for letting it get out of hand. But all it did was delay the inevitable blowup toward the end of the summer. Overall, I had 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 had received from the counselors was, "You made your bed, now sleep in it. Learn to deal with your problems." Whenever I've told this story to therapists, they've said, "How did they expect you to work under that kind of pressure?"

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 had 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 had 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. 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 indicated, "Get that woman out of here now." About fifteen minutes later, the woman left.

As soon as the woman was gone, Mom asked, "What's wrong?"

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

Mom's face fell as she looked at 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 that I had 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 word for what I was?

Mom then suggested I call the office and get an explanation. I don't know how I did it, but I managed to calm down enough to make the phone call. I called and told the woman who answered who I was, and I asked her to do something 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. "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 possible I had done that 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. Today I still have a photo of him dressed up as Satan with a "666" on his chest because he thought it was funny.

"What else?" I asked.

"Let's see… it says, 'Julie stomped out of the dining room when everyone else had 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 she could be talking about. 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 (I might have done it in 1995 when I first got there and truly was paranoid-- but school had conditioned me that way) as if it had happened this year?

"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 couldn't find it.

I got off the phone and broke down again. I told Mom an abridged version of what the woman had 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 to find a little girl in there, crying, because the movie 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 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 had been 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 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. Never mind that I could have suddenly moved into the path of the knife.

When I talked about these injustices with Dad later that evening (after he was done telling me that my behavior was infantile and that I couldn't blow up like this when working with kids and that I was just proving the staff right about me… as if that would have helped improve the state of mind I was in), 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 them, "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 concerned 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 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 has 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-- was bipolar, slightly effeminate, and got disproportionately upset if people called him by his birth name (strangely enough, none of these quirks was seen as something to prevent him from working with kids) and if somebody tried to take a picture of him. No, he wasn't transgender. He just didn't like his birth name and ultimately took on a different one.

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 age of enlightenment, 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 probably too young 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. Had I been 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. They 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.

1 comment:

  1. I work with kids with special needs now, and sometimes it makes me happy to see that they have it a lot better now... they have people who recognize what Aspergers is and who try to help them, even if that help isn't always so helpful. But sometimes I also feel sad because I didn't get to have any sort of help... for kids like us growing up in the 80's and 90's, life was a sink or swim situation.

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