I'm angry at so many things right now.
I'm angry that I was born in 1980 instead of 20 years later. This meant growing up in an age of profound ignorance, when there was no word for Asperger's. Instead, I was that problem kid with the mysterious behaviors, someone who my parents and teachers concluded had psychological problems.
I'm angry that my parents didn't know just how aware I was that they thought there was something psychologically wrong with me.
I'm angry that I was expected to change, and that I was conditioned by pretty much everybody to believe that when I got bullied, it was because I brought it upon myself, that others were just "responding" to me.
I'm angry about the cliche that those who bully others are going to grow up flipping hamburgers. No. It's absolutely not true. I know for a fact that a number of the people who bullied me have successful careers. Me? I'm stuck trying to get an entry level job. It's like I've been 22 for the past 14 years.
I'm angry that by the time I went to college, there was still no word for Asperger's-- and instead of getting bullied by other students, I was bullied by teachers, which had rarely happened to me before.
I'm angry that my parents, my mom especially, were so fucking blind to the reality when I told them what was going on in college, that they thought that I was exaggerating.
I'm angry that my teachers in college gave me no tools for going out in the real world with what skills I had; they just told me to give up. One in particular took delight in seeing me fail and suffer.
I'm angry that I had a crush on one of those abusive teachers. What does that mean about me? Am I attracted to abusive people?
I'm angry at how many things about me that are well-understood by psychologists today were shamed by others during my childhood and early adulthood: my obsessions with movies, the fact that I couldn't handle myself when I got a crush on someone, the fact that I RARELY got a crush on anybody, my sense of humor, my slightly-skewed gender identity, etc.
I'm angry that all of this stuff is connected-- that I'm 36 years old and still paying the price for who I am. I still don't have a job. Who the fuck would hire somebody with a patchwork resume of dead-end jobs and multiple degrees that went nowhere?
And because of this, I'm angry when people ask me, "What do you do for work?" For me, it's like one of those "When did you stop beating your wife?" questions. So many loaded assumptions: I'm 36, white, and from a middle-class background, so OF COURSE I must have a career!
I'm angry that I have more skeletons in my closet than a fucking graveyard. I'm angry that my story is so unbelievable that it's the equivalent of airing my dirty laundry in public. I'm angry that on occasion when I DO tell my story, they think I've reached the fundamental point within ten seconds, but the reality is that I've just begun telling it, that it's that long, that convoluted, and contains multiple traumas.
I'm angry that everybody else on the spectrum I've met doesn't have a story even remotely similar to mine:
They're either people with penises who A) Fit the autism stereotype of computer genius and have a successful career, or B) Are so fucking naive and clueless that they don't know what their reality is;
They're people WITHOUT penises who haven't been through the hell I've been through because they were naturally quieter than me. They were able to slip under the radar of "concern".
I'm angry that even within the psychiatric community, there still seems to be this profound misunderstanding that if you have Asperger's you're likely a computer genius and super literal. And you have a penis.
I'm angry that the only services for adults on the spectrum are for people who are so fucking clueless that they need it explained to them that they shouldn't, for example, talk about their masturbation habits at work, because it will make people uncomfortable and get them fired. There are no services for people who have bizarre, complicated problems like mine.
I'm angry that when I tell people I don't understand something, people ask, "What don't you understand?" They see it through a neurotypical perspective no matter how many different ways I try to explain it to them: When I say "I don't understand something", it means I don't fucking understand it! PERIOD! When I was a kid, this was pretty much any movie more complicated than Home Alone. This wasn't me saying, "I don't understand why that guy committed suicide at the end." It was, "I don't understand what the movie is about, what's going on, ANYTHING." As an adult, it's when I'm trying to learn programming. Telling me to "Walk away and come back an hour later" is not going to help WHEN I DON'T FUCKING UNDERSTAND THE MATERIAL! I try to explain this to people, and either I'm explaining it poorly, or they just can't see it! Well, let me give you a metaphor: Go out on a PITCH BLACK NIGHT and say, "I can't see anything." Well, how will you answer it when I ask you, "What don't you see?" Yes, this is what I mean when I say, "I DON'T UNDERSTAND!"
I'm angry that I have to ask my parents for money all the time "until I get a job". With each passing day, I continue to lose hope that this will happen. I wake up in my tiny, paint-chipped apartment and think "So this is my life."
And I'm angry and how much strain I'm putting on my parents financially and perhaps emotionally. Who the hell signs up for this sort of thing when they have kids?
Saturday, January 28, 2017
Sunday, November 13, 2016
That Moment When Your Perception of Reality is Turned Upside Down
A few weeks ago I was at my shrink and talking about how frustrated I was about certain things related to Asperger's, and a strong suspicion that I have a non-verbal learning disability. In fact, I thought the two were intrinsically linked.
My shrink told me that they weren't, and that I haven't even been diagnosed with Asperger's, and--
Wait, WHAT?
I told him that I sure as hell wasn't neurotypical, and that I was diagnosed anyway back in 2003.
He shook his head, and said something like, "A therapist saying that he agrees with your assessment is not a diagnosis. You need neuropsychiatric testing for that. I'm just floored that you never had that done."
"Yeah, well, nobody knew anything back then. In 2003, they gave me an MRI and an EEG. That was it. There was nothing else they could do."
He said that even though people didn't know what Asperger's was until very recently, neuropsychiatric testing has been around since the '80s. That's right, the 1980s! And not one person suggested I have it done, unless you count the psychological evaluation I had at age 8 at my school (but I don't think that qualifies). So this means that my boneheaded shrink that I went to from 1992-1995 didn't know to refer me for it; my very good shrink from 1998-1999 didn't know to refer me for it; and none of the other shrinks I've had-- bad and good-- suggested I have it done. Nobody! Not in suburban Pennsylvania, and not even in New York City!
My therapist does believe I'm on the autism spectrum, but I need neuropsychiatric testing to get an official diagnosis. And this would also screen for the NVLD I've been suspicious of for the past year; I've been suspicious because I've been taking web development classes and I'm always the last to pick up everything. Sometimes instructors and peers think it's a lack of attention to detail (ha! People, if anything, tell me I'm too hung up on details!) or that I'm distracted or whatever, but... there's something else going on. I can't even explain it. And when I've described to my shrink about what it's like for me to learn new non-verbal material, and how I do much better one-on-one, he said that what I've described is very typical of people with NVLD.
Yeah, so I have to look into getting DIAGNOSED after 13 YEARS of being sure that I've had Asperger's. If I don't have it, I don't know what it means. This really would warp reality as I know it.
My shrink told me that they weren't, and that I haven't even been diagnosed with Asperger's, and--
Wait, WHAT?
I told him that I sure as hell wasn't neurotypical, and that I was diagnosed anyway back in 2003.
He shook his head, and said something like, "A therapist saying that he agrees with your assessment is not a diagnosis. You need neuropsychiatric testing for that. I'm just floored that you never had that done."
"Yeah, well, nobody knew anything back then. In 2003, they gave me an MRI and an EEG. That was it. There was nothing else they could do."
He said that even though people didn't know what Asperger's was until very recently, neuropsychiatric testing has been around since the '80s. That's right, the 1980s! And not one person suggested I have it done, unless you count the psychological evaluation I had at age 8 at my school (but I don't think that qualifies). So this means that my boneheaded shrink that I went to from 1992-1995 didn't know to refer me for it; my very good shrink from 1998-1999 didn't know to refer me for it; and none of the other shrinks I've had-- bad and good-- suggested I have it done. Nobody! Not in suburban Pennsylvania, and not even in New York City!
My therapist does believe I'm on the autism spectrum, but I need neuropsychiatric testing to get an official diagnosis. And this would also screen for the NVLD I've been suspicious of for the past year; I've been suspicious because I've been taking web development classes and I'm always the last to pick up everything. Sometimes instructors and peers think it's a lack of attention to detail (ha! People, if anything, tell me I'm too hung up on details!) or that I'm distracted or whatever, but... there's something else going on. I can't even explain it. And when I've described to my shrink about what it's like for me to learn new non-verbal material, and how I do much better one-on-one, he said that what I've described is very typical of people with NVLD.
Yeah, so I have to look into getting DIAGNOSED after 13 YEARS of being sure that I've had Asperger's. If I don't have it, I don't know what it means. This really would warp reality as I know it.
Sunday, October 2, 2016
One Quick Thing...
Lots of people I know tell me all the time not to compare myself to others. It's well-meaning, and I get it. But consider this:
It's so easy for them to say that when they haven't spent their life left behind socially and, in some cases, academically (non-verbal material is what I'm talking about here). The fact is, life doesn't exist in a vacuum. You have to compete in the real world, which expects a neurotypical, non-disabled brain model. If you don't have that model, you have go through years of anguish until you do have it. And if that doesn't work, you have to pretend to have it and hope that nobody discovers the truth. And if you can't do either, you're fucked, socially and financially.
So it's so easy to tell people not to compare themselves to others when they haven't spent their entire lives struggling to just be normal.
Check your privilege.
It's so easy for them to say that when they haven't spent their life left behind socially and, in some cases, academically (non-verbal material is what I'm talking about here). The fact is, life doesn't exist in a vacuum. You have to compete in the real world, which expects a neurotypical, non-disabled brain model. If you don't have that model, you have go through years of anguish until you do have it. And if that doesn't work, you have to pretend to have it and hope that nobody discovers the truth. And if you can't do either, you're fucked, socially and financially.
So it's so easy to tell people not to compare themselves to others when they haven't spent their entire lives struggling to just be normal.
Check your privilege.
Wednesday, August 10, 2016
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.
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.
Saturday, May 28, 2016
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!
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 ofliving 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.
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
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.
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):
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.
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.
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