Jeez, I can't believe how long it's been since I've written a post! I really need to write these more often.
Yes, it's been far too long! A lot has happened since my last post. For one thing, I'm no longer in Boston but in nearby Quincy. The landlord for my old apartment sold my unit-- which had been a steal-- and everything else in the area was approaching New York City prices. Quincy is expensive too, but still a bit less than Boston. It's also near the subway lines, so I moved to my new place-- a nice, one-bedroom apartment-- at the end of last October. I miss living in Boston proper, but at least I'm in a large apartment instead of a studio.
So, today's topic is prosopagnosia... let's discuss!
I am one of many people on the autism spectrum who also has prosopagnosia. Prosopagnosia is a neurological condition that makes it difficult for the afflicted to recognize faces. In my case, it takes me longer than other people to learn new faces. Some people have the condition so severely that they fail to recognize family members-- even spouses-- if they so much as wear a drastically different hairstyle.
I was only identified with prosopagnosia recently, but I long suspected that I have it. I am just terrible at learning new faces. When I was a teenager on my group trip to Israel, I made a friend on the first day. The next day, the friend changed her clothes and I didn't recognize her. This eventually passed, but it took a few days for me to be able to recognize her no matter what she wore.
Throughout my life, I've asked the same new people their names over and over again. It takes me a while to be able to recognize someone at work out of context. As a kid, other kids took advantage of this aspect about me by harassing me, knowing I could not report them because I wouldn't know who they were. Sometimes, my mother would ask me, "Who are these kids?" I would say, "I've never seen them in my life." Except I probably had, several times! When my parents would drop me off at a camp event during the school year, they would ask, "Do you see anybody you know?" I would quickly scan the area for kids in my group, because they were the only kids I recognized. Even if I didn't spot them, sometimes I'd lie and say, "Yes" because I knew that I was supposed to be dropped off at a particular spot anyway, and I'd find them. I didn't want to deal with my parents asking me why I didn't know if I saw other kids from camp, even if they thought such a question would help me.
Prosopagnosia can often be embarrassing. Even before I knew the word for it, I felt ashamed of my problem. Whatever it was, I knew it was an issue that other kids didn't deal with. Sometimes in school if one "friend" was gossiping about other kids, she would say, "Oh, so you know So-and-So?" I would say, "What about her?" And she'd say, "Well, do you know who I'm talking about?" I would lie and say, "Yes," just hoping that the friend would get the story over with. I felt like a complete idiot because I knew that whoever my friend was talking about was probably in several classes with me. But what could I do? The same thing that closeted gay kids did (and probably still do sometimes) when asked, "Who do you have a crush on?" They just play along, pretending to be what society deems "normal" so that they won't be humiliated. And when I worked as a children's librarian, I felt like a complete jerk for not knowing the kids' names. I knew that people probably interpreted that as me not caring. I think it's worse for a woman to have prosopagnosia, because in society women are expected to have the "nurture" setting as their default. That's not me.
And to be honest, while I do care about humanity at large and about individual people once I get to know them, at first glance human faces are all but meaningless to me. Until I get to know the person-- or at least something about them-- I see just a meat bag, a naked mole rat-- take your pick. And I actually wonder if this has something to do with my demisexual/demiromantic orientation. Think about it: Most people get into relationships after an initial attraction based on physical appearance. That doesn't work for me. It's literally impossible for me to think of someone as romantically/sexually attractive until I get to know them in some way. And if people are "meat bags" to me at first glance, why would I feel attracted to someone? As is with demisexual and demiromantic people, attraction is very rare for me.
But as for prosopagnosia as it affects my daily life, fortunately as society marches forward through the 21st century, there is greater understanding. People at work know that I have it, and they don't judge me if it takes me forever to learn new faces or if I get two new people mixed up. They understand and we laugh it off. I'm now comfortable telling people outside of work that I have this problem, and am glad to be living in a time where we can address these issues openly and frankly. There's less anxiety involved when I can just explain to people that, yes, I'm terrible with faces, and yes I will ask your name over and over.
Yes, and so what?
Showing posts with label social skills. Show all posts
Showing posts with label social skills. Show all posts
Tuesday, August 13, 2019
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.
Wednesday, April 29, 2015
The Monster
In a recent post I ended by saying that I was feeling too damned good and optimistic to write my initial post idea about something I call The Monster. But of course the Monster had a reason to come back. He came back to visit today and now I'm enraged, and I can't get to the gym yet to burn him off.
What is the Monster? The Monster is a state of mind I get into when I find out I've done something wrong, or when I'm convinced that I've done something wrong. Last night my friend and I went to see a transgender musician/speaker. In between songs, I turned to my friend and whispered-- or I thought I whispered-- things like, "Oh, this one's my favorite" or "This is what I was telling you about earlier." I had no idea that anything was wrong.
Meanwhile, during the Q and A, I asked the musician/speaker about something that I've heard about-- that occasionally there are people who identify as one gender in childhood and then it changes in adulthood. I don't mean someone who came out in adulthood or someone who didn't know what to call themselves until adulthood. I mean someone whose gender identity honestly changed. And occasionally I have heard, too, about people who've identified as transgender in childhood and then changed in adulthood. I asked him if there has been any research on it. After the Q and A, it occurred to me that I possibly made him feel uncomfortable with that question, that it could be misconstrued as me implying that transgender people should suck it up and "outgrow it". I mean, it's not too unreasonable of a fear, especially since last August some people accused me of silencing rape victims with this blog post. So after the show was over, I went to the musician/speaker and told him that I hoped my question hadn't offended him. He assured me that it hadn't. Well, good.
OK, so I had taken that possibility into account, but of course I couldn't get through a social event without pissing people off. No. It never happens. The Universe won't let it happen. My friend told me today that when I commented between songs, I wasn't whispering and the whole fucking auditorium could hear me. She said that she heard people making annoyed noises. Of course it was a cue that I missed. It scares me because it makes me wonder just how out of touch with reality I am, that I'm the classic unreliable narrator.
Oh, but she was trying to help you by pointing it out to you. First of all, my friend also has Asperger's. More importantly, this isn't an isolated incident. This happens EVERY SINGLE TIME I'M IN A SOCIAL SITUATION WITH PEOPLE I DON'T KNOW. Every time I learn to keep something else in check, something unexpected comes up that I ended up screwing up on. People think I'm being serious when I'm joking, people think I'm angry when I'm not, and all around people misinterpret one thing after another about me.
As I alluded to above, a blog post I wrote was interpreted by people in a Meetup group that I was silencing rape victims. Another group (my sign language Meetup group) kicked me out. Why? They said that I was voicing too much when what I was doing was saying things to myself for clarification in my attempt to learn sign language. For example, "Oh, oh, okay. 'Dog,' got it." This apparently made the deaf people there feel unsafe. Then the straw that broke the camel's back happened one night when I ordered a large dessert and in the spirit of community tried to share it. They felt that I was forcing it on them and it made them feel alienated because I was the only one who ordered it. Four people left early because of me. But of course I had no clue that this was why they were leaving. It didn't even cross my mind.
The day after this past Thanksgiving, I went out to breakfast with my family and extended family. My cousin, with whom I'm close, announced that she was pregnant. Her aunt hadn't arrived yet, and she told us not to say anything and let her make the announcement again when her aunt came. I didn't hear her say that. So when my cousin announced her pregnancy again, I was confused. I turned to my cousin's aunt and said, "What, you didn't know? She announced it before you got here." In other words, I thought she had already known I and didn't get why my cousin was announcing it again. My cousin put her head in her hands, shook her head, and said, "Oh, God, Julie." Embarrassed over my stupidity-- I'm lucky my cousin's aunt didn't feel offended over this-- I walked out of the restaurant to cool down. I knew if I continued to sit there that I would shake and fight back tears. These misspoken words are, of course, the kind of thing that could get me fired if it happened in a job staff meeting. And I knew it. Getting kicked out of the sign language Meetup was still fresh in my mind, so this incident hit me pretty hard.
When I hear yet another bit of feedback after another fuck up, I'm not hearing "constructive criticism" or even an occasional "Don't do this". I'm hearing, "Here's yet another mistake you made." And after decades of this never-ending nitpicking from others, I just feel unbridled rage. Operant conditioning. Amygdala hijacking. That's what the Monster is: He's a intense fight or flight response that I reflexively get when I've done something wrong. My heart races, my fists clench, and I feel intense pins and needles in my face, probably from the sudden surge of adrenaline. It's anger: Anger at myself for annoying, offending, hurting, and scaring people. Anger that I have this intensely negative effect on so many people, that I'm a burden to them, that I habitually cause people distress. He comes to life in my head after I leave a situation thinking that things went well only to find out that I pissed everybody off. He comes to life after I offend people with a few misspoken words. I go into these situations reminding myself things like, "Remember, don't tell raunchy jokes" (I don't anyway unless I'm with people I know well), "Remember, phrase that question in a tactful way", and so forth. But there's always something I fail to take into account because it didn't occur to me to take it into account.
And, as you know from the opening to this blog post, often I assume I've done something wrong when I actually haven't. But if that happens it's often alongside something else upsetting people, something that it would never occur to me to think twice about. I just can't predict what's going to fly and what isn't. There was recently a situation involving someone I am in occasional correspondence with. I don't know him well, but he knows a bit about me from my blog posts, and has been very kind and helpful. That said, I would hate to make trouble for him in any way. I can't get into what the exact situation was, but the short version is that I was afraid I'd hurt him in some way based on something I had said to someone else whom we both know. I emailed him and told him that I was worried that I had done something horrible. He assured me that I hadn't done anything wrong and seemed genuinely puzzled as to why I was worried. He's been very compassionate towards me, so of course I know rationally that if I had done something wrong that a civil discussion-- not yelling, screaming, shunning, blocking, etc.-- would have ensued. But that's the exception, not the rule in my life.
And it's hard to think rationally when the Monster is in my brain, telling me in no uncertain terms that I have done something wrong. In this recent case, it was almost like watching a movie, all these possible scenarios of what the outcome could be running through my head. I wouldn't go so far as to say I heard literal voices, but there is a nagging voice of sorts in my head when this happens. And I'm sorry to say, it's usually the voices of my parents, Mom especially. They only really started to get what it was like to be me about 6 years ago, and before that I heard endless feedback about fuckups in social situations that sometimes included phrases like, "That's abnormal", or "What's wrong with you?" or "I can't believe you said/did that", "I'm wondering where I've failed as a parent.", "You never take advice," "You don't know how to interact with people", "You make people uncomfortable", or any number of phrases that start with the word "You". After decades of conditioning, it's hard to shrug that off.
Today I'm just very angry. Tomorrow I'm going with the same friend I saw yesterday to see a production of Hamlet at Wellesley. That's how the subject of my talking came up. OK, fine, I won't talk during the show.
But don't be surprised if I'm back here tomorrow reporting another social mistake that I made.
What is the Monster? The Monster is a state of mind I get into when I find out I've done something wrong, or when I'm convinced that I've done something wrong. Last night my friend and I went to see a transgender musician/speaker. In between songs, I turned to my friend and whispered-- or I thought I whispered-- things like, "Oh, this one's my favorite" or "This is what I was telling you about earlier." I had no idea that anything was wrong.
Meanwhile, during the Q and A, I asked the musician/speaker about something that I've heard about-- that occasionally there are people who identify as one gender in childhood and then it changes in adulthood. I don't mean someone who came out in adulthood or someone who didn't know what to call themselves until adulthood. I mean someone whose gender identity honestly changed. And occasionally I have heard, too, about people who've identified as transgender in childhood and then changed in adulthood. I asked him if there has been any research on it. After the Q and A, it occurred to me that I possibly made him feel uncomfortable with that question, that it could be misconstrued as me implying that transgender people should suck it up and "outgrow it". I mean, it's not too unreasonable of a fear, especially since last August some people accused me of silencing rape victims with this blog post. So after the show was over, I went to the musician/speaker and told him that I hoped my question hadn't offended him. He assured me that it hadn't. Well, good.
OK, so I had taken that possibility into account, but of course I couldn't get through a social event without pissing people off. No. It never happens. The Universe won't let it happen. My friend told me today that when I commented between songs, I wasn't whispering and the whole fucking auditorium could hear me. She said that she heard people making annoyed noises. Of course it was a cue that I missed. It scares me because it makes me wonder just how out of touch with reality I am, that I'm the classic unreliable narrator.
Oh, but she was trying to help you by pointing it out to you. First of all, my friend also has Asperger's. More importantly, this isn't an isolated incident. This happens EVERY SINGLE TIME I'M IN A SOCIAL SITUATION WITH PEOPLE I DON'T KNOW. Every time I learn to keep something else in check, something unexpected comes up that I ended up screwing up on. People think I'm being serious when I'm joking, people think I'm angry when I'm not, and all around people misinterpret one thing after another about me.
As I alluded to above, a blog post I wrote was interpreted by people in a Meetup group that I was silencing rape victims. Another group (my sign language Meetup group) kicked me out. Why? They said that I was voicing too much when what I was doing was saying things to myself for clarification in my attempt to learn sign language. For example, "Oh, oh, okay. 'Dog,' got it." This apparently made the deaf people there feel unsafe. Then the straw that broke the camel's back happened one night when I ordered a large dessert and in the spirit of community tried to share it. They felt that I was forcing it on them and it made them feel alienated because I was the only one who ordered it. Four people left early because of me. But of course I had no clue that this was why they were leaving. It didn't even cross my mind.
The day after this past Thanksgiving, I went out to breakfast with my family and extended family. My cousin, with whom I'm close, announced that she was pregnant. Her aunt hadn't arrived yet, and she told us not to say anything and let her make the announcement again when her aunt came. I didn't hear her say that. So when my cousin announced her pregnancy again, I was confused. I turned to my cousin's aunt and said, "What, you didn't know? She announced it before you got here." In other words, I thought she had already known I and didn't get why my cousin was announcing it again. My cousin put her head in her hands, shook her head, and said, "Oh, God, Julie." Embarrassed over my stupidity-- I'm lucky my cousin's aunt didn't feel offended over this-- I walked out of the restaurant to cool down. I knew if I continued to sit there that I would shake and fight back tears. These misspoken words are, of course, the kind of thing that could get me fired if it happened in a job staff meeting. And I knew it. Getting kicked out of the sign language Meetup was still fresh in my mind, so this incident hit me pretty hard.
When I hear yet another bit of feedback after another fuck up, I'm not hearing "constructive criticism" or even an occasional "Don't do this". I'm hearing, "Here's yet another mistake you made." And after decades of this never-ending nitpicking from others, I just feel unbridled rage. Operant conditioning. Amygdala hijacking. That's what the Monster is: He's a intense fight or flight response that I reflexively get when I've done something wrong. My heart races, my fists clench, and I feel intense pins and needles in my face, probably from the sudden surge of adrenaline. It's anger: Anger at myself for annoying, offending, hurting, and scaring people. Anger that I have this intensely negative effect on so many people, that I'm a burden to them, that I habitually cause people distress. He comes to life in my head after I leave a situation thinking that things went well only to find out that I pissed everybody off. He comes to life after I offend people with a few misspoken words. I go into these situations reminding myself things like, "Remember, don't tell raunchy jokes" (I don't anyway unless I'm with people I know well), "Remember, phrase that question in a tactful way", and so forth. But there's always something I fail to take into account because it didn't occur to me to take it into account.
And, as you know from the opening to this blog post, often I assume I've done something wrong when I actually haven't. But if that happens it's often alongside something else upsetting people, something that it would never occur to me to think twice about. I just can't predict what's going to fly and what isn't. There was recently a situation involving someone I am in occasional correspondence with. I don't know him well, but he knows a bit about me from my blog posts, and has been very kind and helpful. That said, I would hate to make trouble for him in any way. I can't get into what the exact situation was, but the short version is that I was afraid I'd hurt him in some way based on something I had said to someone else whom we both know. I emailed him and told him that I was worried that I had done something horrible. He assured me that I hadn't done anything wrong and seemed genuinely puzzled as to why I was worried. He's been very compassionate towards me, so of course I know rationally that if I had done something wrong that a civil discussion-- not yelling, screaming, shunning, blocking, etc.-- would have ensued. But that's the exception, not the rule in my life.
And it's hard to think rationally when the Monster is in my brain, telling me in no uncertain terms that I have done something wrong. In this recent case, it was almost like watching a movie, all these possible scenarios of what the outcome could be running through my head. I wouldn't go so far as to say I heard literal voices, but there is a nagging voice of sorts in my head when this happens. And I'm sorry to say, it's usually the voices of my parents, Mom especially. They only really started to get what it was like to be me about 6 years ago, and before that I heard endless feedback about fuckups in social situations that sometimes included phrases like, "That's abnormal", or "What's wrong with you?" or "I can't believe you said/did that", "I'm wondering where I've failed as a parent.", "You never take advice," "You don't know how to interact with people", "You make people uncomfortable", or any number of phrases that start with the word "You". After decades of conditioning, it's hard to shrug that off.
Today I'm just very angry. Tomorrow I'm going with the same friend I saw yesterday to see a production of Hamlet at Wellesley. That's how the subject of my talking came up. OK, fine, I won't talk during the show.
But don't be surprised if I'm back here tomorrow reporting another social mistake that I made.
Friday, September 5, 2014
People Just Don't Get It
Note: This is an angry rant, so there will be some swearing. If you're offended by that sort of thing, just read my other blog posts.
This post is an angry rant, because I am pretty fucking angry. It's hard enough to keep a happy, optimistic face for this blog. I want this blog to come across happy and optimistic because I want to give parents hope that everything is going to be okay. But I have to be honest. There is a lot in my life that isn't okay. Sometimes I get so frustrated and angry that I break down crying, thinking, "Where do I even begin to fix this?" And by "this" I mean being financially independent like my peers. I am turning 34 in October, and I still don't have a career or even a decent-sized apartment, let alone one that I can afford on my own. Everybody else my age I know-- and many ten years younger-- has a career, has a decent-sized apartment (or a house, if they're in the suburbs), and doesn't need help from their parents to make ends meet.
"Oh, but at least you're not starving in Africa. You don't know how lucky you are." You know what? You're right. I'm not starving in Africa. So fucking what? That doesn't make my frustration and anger any less real (It's a logical fallacy; I forget what it's called). I grew up relatively privileged, in a white, middle-class household with educated parents. I lived in a relatively affluent suburb in Pennsylvania. I went to college and grad school. Given my background, I should have a career now and be financially independent. But if you have Asperger's Syndrome, growing up privileged doesn't mean shit unless you are born into wealth. I still have to get a career. I have a Master's Degree and am making $12.75 an hour at a temporary work-at-home job. What is my job? Transcribing. Mind-numbing transcribing that any idiot with a GED can do. And because I lost my last two jobs, each after a paltry four months (in both cases they said I was too awkward and made our clientele uncomfortable), to stay in Boston I had to give up my spacious, one-bedroom apartment and downgrade to a studio. It's $1200 a month, and the only way to get any lower in Boston is to live in a basement apartment not much bigger than a walk-in closet with no windows. Even then, the lowest the rent goes for something like that is $1000. The other option is to get roommates, which can bring each person's rent as low as $700-$800 per month. But all my roommate situations in the past have been disasters. My parents even said they would rather help me pay for my own little corner of the universe than take the chance that I would get into some ridiculous conflict with roommates and then have to move out (moving, of course, isn't free).
I know that I'm more intelligent than my employment history and living circumstances reflect but that makes no fucking difference unless you have pristine social skills. And research has shown that the decision to hire someone an any job is almost entirely based on how well they think she'll "fit in" with her coworkers, much more than if she has the talent to do the job. I'm not the kind of person who fits in. It's not that I haven't tried, it's that I can't. Making friends is not an issue for me because I live in a diverse city and can easily find social misfits/intellectual nerds who'd rather talk about psychologically intense topics than how someone's third cousin once removed is doing. But most people would rather talk about the latter, and that's what they expect you to do on the job, even if it is not related to the job description. People know when I'm faking it. I can only feign interest in somebody's third cousin once removed before the holes in my mask start to form. I then have to retreat to my little corner of the universe and do my work. But no. Most high paying jobs expect you to work as a team. I work in groups with about the same ease and naturalness as an asexual person behaves like John F. Kennedy.
"Oh, well have you tried this? Or that? Or the other thing?" Yes, of course I have. I've finished my undergrad 11 years ago. You think I haven't fucking tried? Of course I have, and I've run into one brick wall after another.
Oh, and people have told me over and over that I come off as harsh, angry, argumentative, and even cold.
"You know, the way you're talking to me when you're upset, you're real intense and argumentative and harsh. Maybe that's what's gotten you in trouble at work." No! That's not what has happened! I'm letting my guard down with you. At work I try to hide these emotions. People have told me I'm too "intense" or "harsh" or "argumentative" even when I'm happy or joking around. It's like all I have to do to fucking offend someone is open my fucking mouth, even if I just ask how they are! So you know what the other option is, to make sure I don't offend anyone or make anyone uncomfortable? Not talk. And then I become a fucking stiff and they still feel uncomfortable, but for different reasons.
"Well, you know, you do tell inappropriate and sometimes shocking jokes. Do you do that at work?"
Yes, I have a raunchy, macabre, and downright absurd sense of humor. I also love saying things for shock value just to see how people react. But you know, I'm not Rainman. I tell the "shock value" jokes you're talking about to friends or on online social networks under an anonymous name, not in a professional setting. My friends laugh, and people online click "like" or write "Hahaha!" I learned years and years ago that there's a time and a place for these things, and work sure as hell isn't it. People at work have called me "inappropriate" for reasons that I'm not sure of but that have nothing to do with the jokes I tell outside of work.
"Well you're very interested in the work of Richard Dawkins and Dr. Kevorkian. You bring those guys up all the time. Are you talking about them at work? You can't do that, you know. They're too controversial."
Yes, I fucking know that I can't bring up these guys or their work in a job setting-- especially not Dr. Kevorkian-- because people at work represent a diverse range of sociopolitical and religious beliefs and I don't know these people well enough to have such discussions with them. I don't feel deprived if I can't bring up Richard Dawkins or Dr. Kevorkian, either. I am at work to do work. Of course, the funny thing is I've heard radically conservative people at work bring up their shocking views without getting in trouble.
"Maybe you are talking about Richard Dawkins and Dr. Kevorkian and you don't realize it?"
I think I'm fucking aware of what topics I'm bringing up. Don't patronize me.
When people-- friends, relatives, and even my shrink-- say these things to me, they clearly don't get it. I know they're trying to help me, reaching for the lowest hanging fruit, so to speak. But after a while it's like I'm hearing a mantra, a list of phrases from a pull-string doll. And yes, when I get frustrated enough, I do explode and curse a blue streak (it upsets them, but they know not to take it personally and I do apologize later). But they don't get it. They really don't. Why? They're coming from a neurotypical perspective, that the only way that I as a white, privileged middle-class American could be in this situation is if there was something I haven't tried. The fact that even my shrink gives these obvious suggestions is very telling. Hell, even my parents only started to "get it" in the past five years or so!
This is my life as an adult with Asperger's. Don't get me wrong: I am happy most of the time. But then sometimes (like last night when I was talking to my shrink) old wounds get reopened. No, they get reopened, have salt poured in them, and are pissed in. And I get angry and explosive and cry. Sometimes I just can't take it. Working out usually helps a little, but recently I injured myself while running and I can't do much of anything in the way of vigorous exercise until I heal.
I'm angry. I'm hurting. I'm cynical. I'm frustrated. I have Asperger's Syndrome.
This post is an angry rant, because I am pretty fucking angry. It's hard enough to keep a happy, optimistic face for this blog. I want this blog to come across happy and optimistic because I want to give parents hope that everything is going to be okay. But I have to be honest. There is a lot in my life that isn't okay. Sometimes I get so frustrated and angry that I break down crying, thinking, "Where do I even begin to fix this?" And by "this" I mean being financially independent like my peers. I am turning 34 in October, and I still don't have a career or even a decent-sized apartment, let alone one that I can afford on my own. Everybody else my age I know-- and many ten years younger-- has a career, has a decent-sized apartment (or a house, if they're in the suburbs), and doesn't need help from their parents to make ends meet.
"Oh, but at least you're not starving in Africa. You don't know how lucky you are." You know what? You're right. I'm not starving in Africa. So fucking what? That doesn't make my frustration and anger any less real (It's a logical fallacy; I forget what it's called). I grew up relatively privileged, in a white, middle-class household with educated parents. I lived in a relatively affluent suburb in Pennsylvania. I went to college and grad school. Given my background, I should have a career now and be financially independent. But if you have Asperger's Syndrome, growing up privileged doesn't mean shit unless you are born into wealth. I still have to get a career. I have a Master's Degree and am making $12.75 an hour at a temporary work-at-home job. What is my job? Transcribing. Mind-numbing transcribing that any idiot with a GED can do. And because I lost my last two jobs, each after a paltry four months (in both cases they said I was too awkward and made our clientele uncomfortable), to stay in Boston I had to give up my spacious, one-bedroom apartment and downgrade to a studio. It's $1200 a month, and the only way to get any lower in Boston is to live in a basement apartment not much bigger than a walk-in closet with no windows. Even then, the lowest the rent goes for something like that is $1000. The other option is to get roommates, which can bring each person's rent as low as $700-$800 per month. But all my roommate situations in the past have been disasters. My parents even said they would rather help me pay for my own little corner of the universe than take the chance that I would get into some ridiculous conflict with roommates and then have to move out (moving, of course, isn't free).
I know that I'm more intelligent than my employment history and living circumstances reflect but that makes no fucking difference unless you have pristine social skills. And research has shown that the decision to hire someone an any job is almost entirely based on how well they think she'll "fit in" with her coworkers, much more than if she has the talent to do the job. I'm not the kind of person who fits in. It's not that I haven't tried, it's that I can't. Making friends is not an issue for me because I live in a diverse city and can easily find social misfits/intellectual nerds who'd rather talk about psychologically intense topics than how someone's third cousin once removed is doing. But most people would rather talk about the latter, and that's what they expect you to do on the job, even if it is not related to the job description. People know when I'm faking it. I can only feign interest in somebody's third cousin once removed before the holes in my mask start to form. I then have to retreat to my little corner of the universe and do my work. But no. Most high paying jobs expect you to work as a team. I work in groups with about the same ease and naturalness as an asexual person behaves like John F. Kennedy.
"Oh, well have you tried this? Or that? Or the other thing?" Yes, of course I have. I've finished my undergrad 11 years ago. You think I haven't fucking tried? Of course I have, and I've run into one brick wall after another.
Oh, and people have told me over and over that I come off as harsh, angry, argumentative, and even cold.
"You know, the way you're talking to me when you're upset, you're real intense and argumentative and harsh. Maybe that's what's gotten you in trouble at work." No! That's not what has happened! I'm letting my guard down with you. At work I try to hide these emotions. People have told me I'm too "intense" or "harsh" or "argumentative" even when I'm happy or joking around. It's like all I have to do to fucking offend someone is open my fucking mouth, even if I just ask how they are! So you know what the other option is, to make sure I don't offend anyone or make anyone uncomfortable? Not talk. And then I become a fucking stiff and they still feel uncomfortable, but for different reasons.
"Well, you know, you do tell inappropriate and sometimes shocking jokes. Do you do that at work?"
Yes, I have a raunchy, macabre, and downright absurd sense of humor. I also love saying things for shock value just to see how people react. But you know, I'm not Rainman. I tell the "shock value" jokes you're talking about to friends or on online social networks under an anonymous name, not in a professional setting. My friends laugh, and people online click "like" or write "Hahaha!" I learned years and years ago that there's a time and a place for these things, and work sure as hell isn't it. People at work have called me "inappropriate" for reasons that I'm not sure of but that have nothing to do with the jokes I tell outside of work.
"Well you're very interested in the work of Richard Dawkins and Dr. Kevorkian. You bring those guys up all the time. Are you talking about them at work? You can't do that, you know. They're too controversial."
Yes, I fucking know that I can't bring up these guys or their work in a job setting-- especially not Dr. Kevorkian-- because people at work represent a diverse range of sociopolitical and religious beliefs and I don't know these people well enough to have such discussions with them. I don't feel deprived if I can't bring up Richard Dawkins or Dr. Kevorkian, either. I am at work to do work. Of course, the funny thing is I've heard radically conservative people at work bring up their shocking views without getting in trouble.
"Maybe you are talking about Richard Dawkins and Dr. Kevorkian and you don't realize it?"
I think I'm fucking aware of what topics I'm bringing up. Don't patronize me.
When people-- friends, relatives, and even my shrink-- say these things to me, they clearly don't get it. I know they're trying to help me, reaching for the lowest hanging fruit, so to speak. But after a while it's like I'm hearing a mantra, a list of phrases from a pull-string doll. And yes, when I get frustrated enough, I do explode and curse a blue streak (it upsets them, but they know not to take it personally and I do apologize later). But they don't get it. They really don't. Why? They're coming from a neurotypical perspective, that the only way that I as a white, privileged middle-class American could be in this situation is if there was something I haven't tried. The fact that even my shrink gives these obvious suggestions is very telling. Hell, even my parents only started to "get it" in the past five years or so!
This is my life as an adult with Asperger's. Don't get me wrong: I am happy most of the time. But then sometimes (like last night when I was talking to my shrink) old wounds get reopened. No, they get reopened, have salt poured in them, and are pissed in. And I get angry and explosive and cry. Sometimes I just can't take it. Working out usually helps a little, but recently I injured myself while running and I can't do much of anything in the way of vigorous exercise until I heal.
I'm angry. I'm hurting. I'm cynical. I'm frustrated. I have Asperger's Syndrome.
Friday, August 22, 2014
Independent-Living Prospects
I am fed up with people asking me what I do for a living.
It's one of those questions that begs the question. That is, people assume that because I am thirty-three I must have a career. But I don't have a career. It's just one of those aspects of life that is taken for granted. When people ask me what I do for a living, they are making a lot of unconscious assumptions: They see that I am a white, middle-class American. Most likely my life was uneventful. I finished high school, went to college, got a job that I have been working at for ten years or so and, possibly married with kids, am living happily ever after (fortunately I am living in an era when, and a city where, marriage and children isn't one of these assumptions). When they make these assumptions, they assume, too, that I am neurotypical, even if they have never heard of the word. These are some of the many assumptions that people make about every other human being on earth, and only recently have they been brought into question.
People who know me and know my situation tell me to "think positive". It's easy for them to say, of course, since they are neurotypical people who are not stuck with the sometimes-torture chamber that is my brain. They haven't gone to school, constantly been between jobs-- dead-end jobs, that is-- realized that their degree was useless, gone back to school, gotten a Master's Degree, taken two jobs related to that degree and been fired from both of them because of issues related to interpersonal skills, and then realized that that they have yet another useless degree. They do not understand the turmoil I have had to live with practically from the dawn of my consciousness. And their suggestions to alleviate some of the problems related to living independently actually do not work for me. They take it for granted that these suggestions would work because they would work for most people. It doesn't even occur to them that there are some people for whom these suggestions would be harmful.
What suggestions are we talking about exactly? For example:
1. Until you can get a permanent job (yes, like WHEN?), why not take a job in retail? At least it's some money!
No. I can't take a job in retail. I was just fired from two jobs that involved working with the public. I can only put a fake smile on my face and pretend to be interested in everybody's personal lives before the holes in my facade start to form. People can see right through that. Besides, it's too emotionally exhausting for me. This isn't a matter of "won't", but a matter of "can't", in the same way a person with an IQ of 75 can't do calculus. This is just not who I am, and I have tried it.
Just for the record, I do have a temporary work at home job. It does not pay well, however.
2. Get a roommate so that you can save money. It will also be less of a burden on your parents.
Yes, it's true. My parents are helping me to live in Boston, just as they helped me to live in New York City. My mother is retiring next year, so unless I find something within the coming year, I have to move back to Pennsylvania to live with my parents. In the meantime, I am downgrading from a one-bedroom to a studio apartment (fortunately in the same building) on August 31st. I sucked it up and got rid of a lot of books and some furniture so I can comfortably fit in this smaller unit. My one-bedroom is $1425 a month and is set to go up to $1500 this fall. The studio is $1200 a month. I actually did try getting a roommate. I met a fellow Aspie over the Internet. We hit it off immediately and started making arrangements to get a place together. But he and I got into an argument over something really stupid and realized it wouldn't work out. Before meeting him I met a few other potential roommates. None of them picked me. I am sure I would be difficult to live with. I have my own habits, my own way of doing things. This is very typical of people with Asperger's. Plus, when I was in college, nearly all my roommate situations ended in disaster. Even my parents agreed that they would rather sacrifice some extra money to help me rent a studio than hope that a roommate situation to which they wouldn't have to contribute financially would work out.
3. Move to a suburb. It's so much cheaper!
Yes, it is not only cheaper but also a lot less diverse and accepting. In places like New York and Boston, I feel comfortable and make friends with ease. It is hard to meet people as accepting and open-minded in a suburb, even in comparatively liberal suburbs such as the one in Pennsylvania where my parents live. Plus, think about this: If some employers in a city are uncomfortable with my personality, it would probably be much worse in a suburb. My job prospects would likely not be any better, despite the lack of competition.
4. Why don't you try [insert job prospect here]?
I already have. I have been down so many paths that it is almost laughable when others make suggestions, thinking I actually haven't tried them. That's another assumption: People assuming that I don't have a career because there are avenues that I haven't thought to explore.
In short, I am beyond frustrated. I live in Massachusetts, a state that famously has the most resources in the U.S. for adults with Asperger's Syndrome, so that is making me hopeful that they can assist me with finding a job. I am, however, not optimistic. I like to think that my blog posts give people hope, but sometimes I have to be honest: Life with Asperger's often does not turn out the way it did for Temple Grandin, for example. Most people with Asperger's-- women especially-- struggle to make ends meet in adulthood. I've heard of brilliant people working as janitors or doing some work that doesn't reflect their intelligence because they can't get through a job interview. Or they get through the interview and can't hold the job because of conflicts with coworkers and their bosses. Right now I feel that my only hope is to get my writing published (I have already finished a book that I am shopping around and am currently working on another). But even most best-selling authors have to have day jobs to make ends meet.
To those of you who brandish big smiles while telling me to "think positive", please walk around in my shoes for a day.
It's one of those questions that begs the question. That is, people assume that because I am thirty-three I must have a career. But I don't have a career. It's just one of those aspects of life that is taken for granted. When people ask me what I do for a living, they are making a lot of unconscious assumptions: They see that I am a white, middle-class American. Most likely my life was uneventful. I finished high school, went to college, got a job that I have been working at for ten years or so and, possibly married with kids, am living happily ever after (fortunately I am living in an era when, and a city where, marriage and children isn't one of these assumptions). When they make these assumptions, they assume, too, that I am neurotypical, even if they have never heard of the word. These are some of the many assumptions that people make about every other human being on earth, and only recently have they been brought into question.
People who know me and know my situation tell me to "think positive". It's easy for them to say, of course, since they are neurotypical people who are not stuck with the sometimes-torture chamber that is my brain. They haven't gone to school, constantly been between jobs-- dead-end jobs, that is-- realized that their degree was useless, gone back to school, gotten a Master's Degree, taken two jobs related to that degree and been fired from both of them because of issues related to interpersonal skills, and then realized that that they have yet another useless degree. They do not understand the turmoil I have had to live with practically from the dawn of my consciousness. And their suggestions to alleviate some of the problems related to living independently actually do not work for me. They take it for granted that these suggestions would work because they would work for most people. It doesn't even occur to them that there are some people for whom these suggestions would be harmful.
What suggestions are we talking about exactly? For example:
1. Until you can get a permanent job (yes, like WHEN?), why not take a job in retail? At least it's some money!
No. I can't take a job in retail. I was just fired from two jobs that involved working with the public. I can only put a fake smile on my face and pretend to be interested in everybody's personal lives before the holes in my facade start to form. People can see right through that. Besides, it's too emotionally exhausting for me. This isn't a matter of "won't", but a matter of "can't", in the same way a person with an IQ of 75 can't do calculus. This is just not who I am, and I have tried it.
Just for the record, I do have a temporary work at home job. It does not pay well, however.
2. Get a roommate so that you can save money. It will also be less of a burden on your parents.
Yes, it's true. My parents are helping me to live in Boston, just as they helped me to live in New York City. My mother is retiring next year, so unless I find something within the coming year, I have to move back to Pennsylvania to live with my parents. In the meantime, I am downgrading from a one-bedroom to a studio apartment (fortunately in the same building) on August 31st. I sucked it up and got rid of a lot of books and some furniture so I can comfortably fit in this smaller unit. My one-bedroom is $1425 a month and is set to go up to $1500 this fall. The studio is $1200 a month. I actually did try getting a roommate. I met a fellow Aspie over the Internet. We hit it off immediately and started making arrangements to get a place together. But he and I got into an argument over something really stupid and realized it wouldn't work out. Before meeting him I met a few other potential roommates. None of them picked me. I am sure I would be difficult to live with. I have my own habits, my own way of doing things. This is very typical of people with Asperger's. Plus, when I was in college, nearly all my roommate situations ended in disaster. Even my parents agreed that they would rather sacrifice some extra money to help me rent a studio than hope that a roommate situation to which they wouldn't have to contribute financially would work out.
3. Move to a suburb. It's so much cheaper!
Yes, it is not only cheaper but also a lot less diverse and accepting. In places like New York and Boston, I feel comfortable and make friends with ease. It is hard to meet people as accepting and open-minded in a suburb, even in comparatively liberal suburbs such as the one in Pennsylvania where my parents live. Plus, think about this: If some employers in a city are uncomfortable with my personality, it would probably be much worse in a suburb. My job prospects would likely not be any better, despite the lack of competition.
4. Why don't you try [insert job prospect here]?
I already have. I have been down so many paths that it is almost laughable when others make suggestions, thinking I actually haven't tried them. That's another assumption: People assuming that I don't have a career because there are avenues that I haven't thought to explore.
In short, I am beyond frustrated. I live in Massachusetts, a state that famously has the most resources in the U.S. for adults with Asperger's Syndrome, so that is making me hopeful that they can assist me with finding a job. I am, however, not optimistic. I like to think that my blog posts give people hope, but sometimes I have to be honest: Life with Asperger's often does not turn out the way it did for Temple Grandin, for example. Most people with Asperger's-- women especially-- struggle to make ends meet in adulthood. I've heard of brilliant people working as janitors or doing some work that doesn't reflect their intelligence because they can't get through a job interview. Or they get through the interview and can't hold the job because of conflicts with coworkers and their bosses. Right now I feel that my only hope is to get my writing published (I have already finished a book that I am shopping around and am currently working on another). But even most best-selling authors have to have day jobs to make ends meet.
To those of you who brandish big smiles while telling me to "think positive", please walk around in my shoes for a day.
Friday, August 5, 2011
Returning to My Roots
Thanks for coming! I'm gradually moving my blog to Substack! You can check out this post here!
Friday, July 22, 2011
You Can't Live Like That!
One of my biggest regrets of my life was the fact that I mostly kept to myself in high school. With undiagnosed Asperger's, I was too scared of screwing up socially and making myself a target and going through another living hell of bullying. So I kept quiet and barely spoke to people. I didn't open up. There were a few people I spoke to during homeroom and art class and gym, and even though I knew that we could probably be good friends, I never took the chance of letting them get to know me. I blended into the background while everyone else had, as the cliché goes, the best years of their lives. I wasn't miserable, but I wasn't particularly happy either.
You can't live like that.
We need to create a world that is more understanding to people with Asperger's syndrome or their teenage and adult years will be, at best, limbo or, at worst, a living hell.
You can't live like that.
We need to create a world that is more understanding to people with Asperger's syndrome or their teenage and adult years will be, at best, limbo or, at worst, a living hell.
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