Jeez, it's been a while since I've posted, and when I wrote my last post I was in a very dark place and feeling utterly hopeless.
I'm happy to say that things have gotten better: At the end of May, I got a full-time job at an autism-friendly workplace in which I can use my drawing and writing talents. Despite my lack of professional experience in this area, my boss hired me based on raw talent, knowing that my lack of professional experience was likely Asperger's-related and not due to laziness and other factors people are often too quick to assume.
Ironically, I found this job through the school in which I had been taking the web development class. I haven't touched coding since I've gotten the job, however. After all, at long last I have a job doing work based on where my talents actually lie-- writing and drawing-- than in the "practical" areas that society says I ought to have.
While I enjoyed the environment at the school where I took the web development class, the learning process caused me a lot of stress and anxiety; it has since been confirmed that I have nonverbal learning disability, which I think might account for the difficulties I had in learning the material. While I might pick it up coding again eventually, right now I'm glad to be able to focus on my art and writing. I've been going to open drawing sessions, I've taken watercolor painting classes, and in November I'll be going to a one-day writing workshop.
I'm not completely financially independent-- the company I work for is a startup and does not currently offer medical benefits. My insurance is $234 a month (I opted for this more expensive insurance because of a procedure I have to have in a couple days, which will be explained below), and my parents foot the bill for that and help a little bit with the rent. And whenever I take a class, they pay for it. But it's still a far cry from where I was before, 100% dependent on them and feeling completely hopeless about the future.
Another update: In May I learned about something that initially scared me but have since learned is manageable: I have a cerebral aneurysm in my left internal carotid artery. It is 3-4mm in diameter, which is considered small. Since my blood pressure is excellent and because I don't smoke, it is currently not life-threatening. However, this could change as I get older. My neurosurgeon offered (rather than actively recommending, as all surgery comes with some risk) to treat it. I decided to go ahead with it because while right now the chance of eruption is next to zero, in twenty years we're talking about numbers like 10%-- a bit of a game of Russian Roulette. Right now, with the minimal risk, I was also glad to find out that I could even continue exercising-- running, lifting weights, swimming laps-- so long as I didn't do something extreme like run a marathon. Since I was given the green light for exercising, and since summer is my favorite season, I decided to go in for surgery at the end of the summer-- this Wednesday, September 20th, at Massachusetts General Hospital.
So what will they do? Shave my head, drill into my skull, and clip the aneurysm? No. Clipping is a process that is usually done on aneurysms on the surface of the brain. Mine is in my left internal carotid artery, and drilling into my head to access the aneurysm would be pretty risky. The surgeons are going to do a different procedure, one that is often employed for people with aneurysms that are deeper inside the head. They're going to insert a catheter in my femoral artery at the groin, run the catheter all the way up to my head, and deposit some coils inside the aneurysm sac. Since it's a wide-necked aneurysm, they will also put a stent inside the artery to hold the coils in place. The coils induce blood clotting and ultimately seal off the aneurysm opening to prevent blood from getting in. And I get to leave the hospital the next day. Pretty low-key surgery for what is technically brain surgery (sort of; the aneurysm isn't IN my brain, just near it).
Then, my parents will drive me to Pennsylvania, where I grew up and where they continue to live, so I can recover. I'm really excited because some friends that I went to film school with in New York City and who now live in Los Angeles are, ironically, moving to my hometown in Pennsylvania. They are there right now looking for a house, so I'll get to see them while they're there. They're probably going to be moved by Christmas, and they might start coming to my family's Thanksgiving and Christmas gatherings every year. So I'm pretty stoked about that.
However, the reptilian part of my brain is worried about complications during the surgery-- such as the catheter popping the aneurysm-- and I'm a bit nervous about going under general anesthesia because I don't know what it feels like. The idea of having control taken away from me-- "Here, we're going to stick a needle in your arm and you're going to go into medically-induced coma and there's nothing you can do about it"-- freaks me out. But the logical part of my brain thinks that the surgery will be uneventful, and recovery will be a snap. When I had an angiogram (which involves injecting dye through a catheter inserted into the groin, going all the way up to the head), the doctors gave me a sedative that had practically no effect on me. They said that even for a young person, I was unusually awake and alert during the procedure. They explained that it means my liver processes drugs very efficiently. So my guess is I won't be one of those people who is super fatigued after surgery.
Well, that's it for today's post. Sorry it's been so long, but as you can see it's been a hectic year!
Sunday, September 17, 2017
Saturday, January 28, 2017
Angry
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?
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?
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.
Subscribe to:
Posts (Atom)