This post has nothing to do with Asperger's Syndrome. It's just a little thing about writing.
Ever have a moment in your life that is too abstract to translate into words? There is a moment from January or February of 2013 that keeps coming back to me, one of those moments that I just remember so clearly. Not just the moment, but the sensory aspects of it. What I was feeling, mentally and physically. But even describing that does not do justice to the abstract interpretation that was going on in my head.
Background: I was in the process of losing weight, with the goal of reclaiming the long-lost thin, healthy body I had growing up, particularly the athletic, muscular, robust body that I had in high school when I was running track. I had battled a weight problem for eleven years, and in the fall of 2012 I hit upon a solution that worked for me. The biggest change that precipitated the weight loss was not figuring out the process itself, but rather getting in the right state of mind to fully implement that process. It was as if I suddenly flipped a switch in my head and was pursuing this goal with a single-minded focus. Don't ask me how it works; if I could bottle it and sell it I'd be rich (forgive the abuse of an old cliché here).
What was the moment itself? It happened three or four months into my weight loss journey. I was exiting the Dodge YMCA in Brooklyn, still in the throes of an intense high that I had induced from yet another extreme workout, and feeling refreshed from the shower and sauna that followed. I was acutely aware of every sense that was activated. I have no idea if this was physiological, a side effect of the endorphins that I generated from exercise, or if it was entirely psychological. I felt a little sore from the workout, a dull aching in my arm and leg muscles, but that was good because it meant I was making progress, slowly turning fat into muscle and strengthening my heart. I was warm from the shower and sauna, and the blast of cold air contrasted it in an interesting way. I hate the cold but for some reason I enjoyed the feeling of it on my face that day and welcomed the crisp smell. I was wearing a winter coat that I had bought when I was thirty pounds heavier, but at that moment I suddenly noticed how huge it was on me, hanging off of my now lean frame. I had a big, involuntary grin on my face. And on top of all this, I was plugged into my iPod, listening to the indie rock song "Hands of Hate" by transgender musician Ryan Cassata. Despite the title, the chorus sounds hopeful, not just in lyrics but in tune. It was when I was listening to the song's chorus that all the other senses I previously described where hitting me full force. It seems that the song was the factor that sealed the moment, if that makes sense.
I was extremely aware of these thoughts and sensations in the period of a few seconds, and yet they just took me several sentences to explain. I just told you what was going through my head and what I was feeling, but I am lost at how to show it to you. You would just have to get in my head, I suppose. But maybe I'll figure out a way to do it. That's one of the challenges of writing. And it's also a testament to how everyone has his or her own subjective experience and often cannot get anybody else to understand it in quite the same way.
Monday, July 28, 2014
Sunday, July 13, 2014
They are Hurting
I was thinking about some misunderstandings that I experienced while growing up. I think it's important that I share them. I hope this brief list will help clarify to parents what they are seeing in their children with Asperger's:
Children with Asperger's generally don't scream and throw things to get attention. Often they are frustrated because of how the world doesn't understand them.
They are hurting.
Children with Asperger's don't hit themselves or engage in any other kind of self-harm to get attention. They are frustrated at the world for not understanding them and angry at themselves because they feel they can't do anything right.
They are hurting.
Children with Asperger's Syndrome who cry at the drop of a hat are not necessarily "immature". They are phenomenally frustrated and there is only so much frustration they can take.
They are hurting.
Children with Asperger's Syndrome who retreat into themselves are not doing it because they are immature, rude, or "not brought up right". They have too many emotional scars, possibly from bullying, and are afraid of experiencing further problems with others.
They are hurting.
Children with Asperger's Syndrome who storm out of a room in anger to get away from people who are frustrating them are not spoiled, selfish, immature brats.
They are hurting.
Children with Asperger's Syndrome don't hit the kid who was calling them names because they're "psycho". There is only so much they can take before they fight back, even physically.
They are hurting.
Children with Asperger's Syndrome who cry because they were the last to get a lollipop are not upset because they're just immature and have to learn that they can't always go first. Rather, they are tired of being last at everything, left out of everything, even in a situation as trivial as this.
They are hurting.
Children with Asperger's Syndrome are not crazy.
They are hurting.
I can only imagine how many people with Asperger's Syndrome were institutionalized back in more ignorant times. Those poor, tortured souls. Sometimes I imagine I would have been institutionalized had I been born in 1950 instead of 1980.
Children with Asperger's generally don't scream and throw things to get attention. Often they are frustrated because of how the world doesn't understand them.
They are hurting.
Children with Asperger's don't hit themselves or engage in any other kind of self-harm to get attention. They are frustrated at the world for not understanding them and angry at themselves because they feel they can't do anything right.
They are hurting.
Children with Asperger's Syndrome who cry at the drop of a hat are not necessarily "immature". They are phenomenally frustrated and there is only so much frustration they can take.
They are hurting.
Children with Asperger's Syndrome who retreat into themselves are not doing it because they are immature, rude, or "not brought up right". They have too many emotional scars, possibly from bullying, and are afraid of experiencing further problems with others.
They are hurting.
Children with Asperger's Syndrome who storm out of a room in anger to get away from people who are frustrating them are not spoiled, selfish, immature brats.
They are hurting.
Children with Asperger's Syndrome don't hit the kid who was calling them names because they're "psycho". There is only so much they can take before they fight back, even physically.
They are hurting.
Children with Asperger's Syndrome who cry because they were the last to get a lollipop are not upset because they're just immature and have to learn that they can't always go first. Rather, they are tired of being last at everything, left out of everything, even in a situation as trivial as this.
They are hurting.
Children with Asperger's Syndrome are not crazy.
They are hurting.
I can only imagine how many people with Asperger's Syndrome were institutionalized back in more ignorant times. Those poor, tortured souls. Sometimes I imagine I would have been institutionalized had I been born in 1950 instead of 1980.
Monday, June 16, 2014
Listen to What Your Kids are Trying to Tell You
I was listening to a podcast about transgender children. The mother of a MTF transgender child was on the show, and another person asked her if she and her husband had had difficulty accepting the reality of their child claiming that "he" was really a girl. The mother said that it was not terribly difficult for her and her husband because her father was dyslexic. What does one have to do with the other? Her father is in his seventies; he grew up in an era when dyslexia was unheard of. When he tried to explain that reading was tough for him, the teachers wouldn't have any of it. They told him that he was lazy and wasn't trying. He tried to tell the teachers what was going on in his head-- that letters and numbers were confusing for him-- but they dismissed his explanations as mere excuses. Transgender children face similar obstacles: a natal boy tries to tell "his" mother that "he" is actually a girl (or vice-versa). Many parents respond to this by telling the child that "he" is wrong and doesn't know what "he" is talking about. Drawing on the father's experiences with trying to explain what was going through his head when he had a hard time reading, these parents gave their child the benefit of the doubt that the woman's father never had. The transgender child's parents said, "Who are we to say what's going on in our child's brain?"
As you might guess, I draw a similar parallel to my experiences with Asperger's Syndrome. To navigate the social world growing up, I had to use my cognitive faculties to accomplish social tasks that most other people do intuitively. As you also might have guessed, many parents and teachers told me that I was not trying. I can recall many instances of, as a child, being at social gatherings with my parents and one (or both) of them pulling me aside and telling me, "You're acting inappropriate", "You're too loud", or something else to that effect. Oftentimes I had no idea what I was doing "wrong". After the social gatherings, my mother would often remark, "You were very immature." There were many times at these social gatherings when I would be reduced to tears, frustrated and unable to understand why people (not just my parents) were reacting to me the way they were. Most parents assume they can bring their kids to social gatherings without incident, but whether or not such a gathering would go over smoothly for me was a crapshoot.
These memories continue to haunt me in very vivid dreams, and sometimes I even wake up screaming and crying. In these dreams, I am that ten-year-old kid again, insisting that I'm trying to be "good" only to hear my parents say, "Well, I don't see you trying." My attempts to explain what was going on in my head were dismissed, and that hurt like hell. Another mantra I had to deal with often started with the words, "If you would just... [insert action here]." Okay. Tell the transgender child, "If you would just learn to be a boy" or the dyslexic child, "If you would just learn to read." I assure you that these words can cut deep. It's the verbal equivalent of somebody slowly plunging a rusty knife into your side.
Parents, please listen to your kids. You may be thirty or so years older than them, but sometimes they not only know more than you think, but in some cases more than you.
As you might guess, I draw a similar parallel to my experiences with Asperger's Syndrome. To navigate the social world growing up, I had to use my cognitive faculties to accomplish social tasks that most other people do intuitively. As you also might have guessed, many parents and teachers told me that I was not trying. I can recall many instances of, as a child, being at social gatherings with my parents and one (or both) of them pulling me aside and telling me, "You're acting inappropriate", "You're too loud", or something else to that effect. Oftentimes I had no idea what I was doing "wrong". After the social gatherings, my mother would often remark, "You were very immature." There were many times at these social gatherings when I would be reduced to tears, frustrated and unable to understand why people (not just my parents) were reacting to me the way they were. Most parents assume they can bring their kids to social gatherings without incident, but whether or not such a gathering would go over smoothly for me was a crapshoot.
These memories continue to haunt me in very vivid dreams, and sometimes I even wake up screaming and crying. In these dreams, I am that ten-year-old kid again, insisting that I'm trying to be "good" only to hear my parents say, "Well, I don't see you trying." My attempts to explain what was going on in my head were dismissed, and that hurt like hell. Another mantra I had to deal with often started with the words, "If you would just... [insert action here]." Okay. Tell the transgender child, "If you would just learn to be a boy" or the dyslexic child, "If you would just learn to read." I assure you that these words can cut deep. It's the verbal equivalent of somebody slowly plunging a rusty knife into your side.
Parents, please listen to your kids. You may be thirty or so years older than them, but sometimes they not only know more than you think, but in some cases more than you.
Thursday, June 12, 2014
The Memory That Won't Let Go
It has become almost cliché to say that people with Asperger's Syndrome have a difficult time "letting things go." In fact, I've heard "Jeez, Julie, let it go!" more times than I prefer to count. I've been working on that over the years. I usually end up doing self-talk: "Okay, is this really worth obsessing about?" or "What are you going to accomplish by continuing to replay that incident in your head?" What works the best for me is engaging in vigorous exercise, like running or swimming. The activity is a distraction, and for some reason it helps me think things through more rationally. Maybe it's the endorphin release.
But there is one memory that I have a difficult time letting go of. Rather, it won't let go of me. In 1999, I moved to New York City from my hometown in Pennsylvania to go to art school to study animation. During my second year, I had an animation teacher, Doug (not his real name) who I ultimately developed a crush on. It was some bizarre perfect storm between a childish "hero worship" and, well, a crush. Eighteen years my senior (unusual for me-- I have never before or since then had a crush on someone that much older), he was an excellent teacher, and was intelligent and funny. I was aware that having a crush on him could ultimately lead to a frustrating obsession, and I was determined to handle this one well. I knew that Doug was married and (as far as I knew), monogamous. Besides, I didn't think for a second that he was interested in me. The first two months went well. Doug initially seemed nice, but by the middle of my third year, he was constantly snapping at me and even telling me that I was wasting his time and had no talent.
I felt confused. Surely Doug didn't really mean these things, did he? And, hell, perhaps I should have been understanding that I was probably making him uncomfortable. The self-blame came from past experiences of inadvertently scaring off guys I had crushes on who figured out how obsessed with them I was. I accepted that what was happening was my fault, and if only I did better animation and behaved better, Doug would accept and like me. Everyone else seemed to like him, so I was certain I was the problem. Aside from that, I had already put so much energy into my crush that I could not-- no, would not-- see very clearly that Doug was just a nasty person. What I failed to acknowledge was that while the guys I had crushes on in the past sometimes snapped at me, they almost always apologized later and tried to be friendly. Doug didn't even try. In fact, his behavior towards me became nastier and nastier.
By the end of my fourth year, Doug was unpleasant and vicious to me on a regular basis. He never wasted a moment in favoring me with a scathing remark: in response to a conversation with someone else that didn't involve him, in class if my animation wasn't up to his standards, and even on the school's animation listserv. Every time I commented on something on the listserv, he would make a nasty, bitingly personal comment. Once he even said something like, "I hope certain people get hit by a crosstown bus."
By the time I graduated, I was a wreck, and my self-esteem was destroyed (fortunately, I have since regained it, but that's another long story). This man whom I respected and adored hated me, and I couldn't accept it. Doug had even lied to try to keep me out of a class, saying that it was full when I knew damn well it wasn't. He was a remarkably good liar, able to make the most outrageous lies look like the truth and make the truth look like an outrageous lie. I ultimately got into the class, but only because I all but twisted his arm, so to speak. Deep down, I knew exactly what I was looking at: a vicious person. But I couldn't bring myself to acknowledge it. It was just easier for me to believe that I was the problem. Sometimes believing in nonsense is easier than accepting the reality, swallowing the red pill.
If there was something that should have brought me to my senses, it was Doug's arrest in fall 2004, about a year and a half after I graduated. Yes, that's right. Doug was arrested. He was caught in an undercover FBI sex sting for trying to solicit sex online from someone he believed to be a thirteen-year-old girl. My immediate reaction-- and the one I should have stuck with-- was, "I hate him." But, again, I couldn't swallow the red pill. I tried but then puked it up. I felt bad for Doug, making myself think things like, "Oh, he's just complicated" and, "Oh, he just has a problem and needs help." So what did I do? I wrote him a letter. It said something to the effect of that I was sorry about what happened and that we all make mistakes.
For another year and a half, I continued to trumpet my support for Doug and that what he really needed was help, not prison (he ended up being incarcerated for 4 1/2 years). In the summer of 2006, however, I reached an epiphany (another long story). I finally acknowledged that Doug was a horrible person, and that he was possibly even a sociopath. His arrest did not reflect a brief lapse of judgement on his part. He knew what he was doing. It made sense in light of the way he had treated me: in both cases, he preyed on someone he perceived to be insecure and vulnerable. I have met many nasty people in my life, but Doug has to be the worst human being I have ever known. After Doug's arrest, I was proud of myself for being able to see the situation as "complicated", but now I'm just embarrassed.
Now to the heart of this post. Why won't this memory let me go? Because every time I see someone do something unethical, my mind goes there, goes back to Doug. My reflexive thought is, "Is s/he another Doug? Is s/he harboring dark secrets?" I talked about it tonight with my therapist. It is a very traumatic memory that I need to work through. My friend from art school, Flora (not her real name), tells me that she actually struggles with the same thing. She doesn't even have Asperger's Syndrome. But I think that just speaks to the kind of person Doug was. And that is the kind of bizarre, horrible memory that could hijack anybody's brain.
But there is one memory that I have a difficult time letting go of. Rather, it won't let go of me. In 1999, I moved to New York City from my hometown in Pennsylvania to go to art school to study animation. During my second year, I had an animation teacher, Doug (not his real name) who I ultimately developed a crush on. It was some bizarre perfect storm between a childish "hero worship" and, well, a crush. Eighteen years my senior (unusual for me-- I have never before or since then had a crush on someone that much older), he was an excellent teacher, and was intelligent and funny. I was aware that having a crush on him could ultimately lead to a frustrating obsession, and I was determined to handle this one well. I knew that Doug was married and (as far as I knew), monogamous. Besides, I didn't think for a second that he was interested in me. The first two months went well. Doug initially seemed nice, but by the middle of my third year, he was constantly snapping at me and even telling me that I was wasting his time and had no talent.
I felt confused. Surely Doug didn't really mean these things, did he? And, hell, perhaps I should have been understanding that I was probably making him uncomfortable. The self-blame came from past experiences of inadvertently scaring off guys I had crushes on who figured out how obsessed with them I was. I accepted that what was happening was my fault, and if only I did better animation and behaved better, Doug would accept and like me. Everyone else seemed to like him, so I was certain I was the problem. Aside from that, I had already put so much energy into my crush that I could not-- no, would not-- see very clearly that Doug was just a nasty person. What I failed to acknowledge was that while the guys I had crushes on in the past sometimes snapped at me, they almost always apologized later and tried to be friendly. Doug didn't even try. In fact, his behavior towards me became nastier and nastier.
By the end of my fourth year, Doug was unpleasant and vicious to me on a regular basis. He never wasted a moment in favoring me with a scathing remark: in response to a conversation with someone else that didn't involve him, in class if my animation wasn't up to his standards, and even on the school's animation listserv. Every time I commented on something on the listserv, he would make a nasty, bitingly personal comment. Once he even said something like, "I hope certain people get hit by a crosstown bus."
By the time I graduated, I was a wreck, and my self-esteem was destroyed (fortunately, I have since regained it, but that's another long story). This man whom I respected and adored hated me, and I couldn't accept it. Doug had even lied to try to keep me out of a class, saying that it was full when I knew damn well it wasn't. He was a remarkably good liar, able to make the most outrageous lies look like the truth and make the truth look like an outrageous lie. I ultimately got into the class, but only because I all but twisted his arm, so to speak. Deep down, I knew exactly what I was looking at: a vicious person. But I couldn't bring myself to acknowledge it. It was just easier for me to believe that I was the problem. Sometimes believing in nonsense is easier than accepting the reality, swallowing the red pill.
If there was something that should have brought me to my senses, it was Doug's arrest in fall 2004, about a year and a half after I graduated. Yes, that's right. Doug was arrested. He was caught in an undercover FBI sex sting for trying to solicit sex online from someone he believed to be a thirteen-year-old girl. My immediate reaction-- and the one I should have stuck with-- was, "I hate him." But, again, I couldn't swallow the red pill. I tried but then puked it up. I felt bad for Doug, making myself think things like, "Oh, he's just complicated" and, "Oh, he just has a problem and needs help." So what did I do? I wrote him a letter. It said something to the effect of that I was sorry about what happened and that we all make mistakes.
For another year and a half, I continued to trumpet my support for Doug and that what he really needed was help, not prison (he ended up being incarcerated for 4 1/2 years). In the summer of 2006, however, I reached an epiphany (another long story). I finally acknowledged that Doug was a horrible person, and that he was possibly even a sociopath. His arrest did not reflect a brief lapse of judgement on his part. He knew what he was doing. It made sense in light of the way he had treated me: in both cases, he preyed on someone he perceived to be insecure and vulnerable. I have met many nasty people in my life, but Doug has to be the worst human being I have ever known. After Doug's arrest, I was proud of myself for being able to see the situation as "complicated", but now I'm just embarrassed.
Now to the heart of this post. Why won't this memory let me go? Because every time I see someone do something unethical, my mind goes there, goes back to Doug. My reflexive thought is, "Is s/he another Doug? Is s/he harboring dark secrets?" I talked about it tonight with my therapist. It is a very traumatic memory that I need to work through. My friend from art school, Flora (not her real name), tells me that she actually struggles with the same thing. She doesn't even have Asperger's Syndrome. But I think that just speaks to the kind of person Doug was. And that is the kind of bizarre, horrible memory that could hijack anybody's brain.
Sunday, May 25, 2014
The Summer of 1998
The summer of 1998 doesn't seem like sixteen years ago. I'm not sure how long ago it seems, but it does not seem like sixteen years ago. I suppose what it comes down to was that it was a huge turning point in my life in terms of how I understood myself, the world, and in my place in it.
In June of 1998, just a few weeks before leaving for what (unknown to me) would be my final summer at Camp Negev, I made a huge discovery. Or, that is, I thought I did. After years of wondering what it was about me that was so different, wondering why I was always off in "my own world" and why I got obsessed with movies as well as any guy I had a crush on, I literally woke up one morning and thought to myself, "I have Obsessive-Compulsive Disorder." At the time, it was the closest I could come to labeling myself. Asperger's Syndrome was barely known at the time, and not having heard of it, OCD seemed like the only logical explanation. After a couple years, I realized that wasn't it (and, of course, I didn't know what it was). I compare my experience to that of many transgender people, who have not yet heard the term "transgender", initially misidentifying themselves as gay. Kim Pearson, of Trans Youth Family Allies, calls this mislabeling "in the absence of reflection." The mother of an FTM transgender child, in an interview she talked about her son initially coming out as a lesbian "in the absence of reflection." In other words, her child looked out into the world and didn't see any examples of himself. He felt masculine and thought, "Masculine females are lesbians. That must be what I am." But that label never felt right to him. It was only when he heard the term "transgender" that everything finally began to make sense to him; he realized that he was actually a boy trapped in a girl's body. In my case, I looked out into the world, didn't see examples of myself, and thought, "People who get obsessed with things have OCD. That must be what I have."
Although the OCD label proved to ultimately be wrong, the attempt at diagnosing myself that summer made me aware of something: some people are simply HARDWIRED DIFFERENTLY. This had never occurred to me before in my life. I realized, "If I'm hardwired differently and I know this, I can understand myself better." I came to Camp Negev that summer fully ready to not only embrace this understanding but also to be the best C.I.T. I could be-- at age 17, it was time for me to enter the C.I.T. program at camp. As it turned out, however, camp wasn't ready for me to take this next step. It turned out that the only reason that I got accepted to the program was because my counselor friend and mentor, Jonas, demanded that the camp accept me, which they were originally not going to do. I was allowed to be there, but they would not let me work with kids. For the first time, I realized, "They won't let me work with kids. It's not because I'm a malicious person or someone who would hurt the kids, but it's because I'm hardwired differently and they don't understand me."
The other C.I.T.s, however, had known me already for three years and did understand me. Most of them thought the whole thing was unfair. The camp director told me I could work with kids second session (halfway through the summer) if I proved able to work with them. Do you sense a Catch-22 here? How could I possibly prove myself if they didn't want me near the kids? In fact, I recall constantly referencing Catch-22 throughout that summer. I was given kids second session, but apparently only after director and some other counselors were up until 3:00 A.M. discussing it.
It was around this time that I began to be disillusioned with the social politics of Camp Negev and also see a greater hypocrisy in the world. I could have understood the concerns of the counselors and the director if most people on staff were responsible, caring counselors. But they weren't. Most of them simply worked at camp to be with their friends. I was appalled by some of their conduct. Many of them left their kids alone in the cabins and went off to the staff lounge to smoke weed. Some of them were nasty to the kids. I found this hypocritical at a camp that specifically preached social justice. In fact, during second session when I was at a staff meeting, a group of counselors was talking about an eleven-year-old kid with four-doses-of-Ritalin-per-day ADHD. They said that he was a horrible kid, that he was hopeless, and that he deliberately misbehaved. I did not take this lying down. I told the counselors that the kid was just that-- a kid. He was a kid with ADHD and, thinking of my own epiphany at the beginning of the summer, one who was hardwired differently. I tried to explain that to them but they just laughed at me. What made this even more disgusting was that the meeting was in a cabin cubby and some of the kids were in the next room. I warned the counselors that the kids might be listening. I know I would have at age eleven. Throughout the summer, many of these same counselors were very short with this kid who, as far as I could see, was well-meaning and not malicious. I remember thinking, "I hope when it's his turn to be a C.I.T. in 2004 he doesn't have to go through what I'm going through" (fortunately, years later I learned that he got into the C.I.T. program with no trouble).
From that summer I also took away another lesson that still resonates: It's not what your intentions are, or even what your actions are. It's about how well you cover up any mistakes that you make. Let's use the metaphor of getting caught with your pants down. Socially savvy people get caught not just with their pants down, but peeing or pooping on the floor, masturbating, you name it. They laugh, wipe their hands off, and pull up their pants. No big deal. As someone with Asperger's, when my metaphorical pants fell down (accidentally, of course) at camp, I could not pull them back up with the kind of finesse that the others could. To them, it looked like I committed a serious infraction. This is metaphor of course, but in terms of what actually happened? It was okay for these counselors to go off and smoke weed instead of watching the kids, or to browbeat a kid with ADHD because that was a socially acceptable thing to do. But if I tripped and fell and reflexively said, "Oh, shit!" when a kid was within earshot? Forget it. The whole universe collapsed on itself and within an hour everyone at camp knew and I was read as an unstable person who shouldn't be near kids. Never mind that these kids really liked me. I recall one fellow C.I.T. commenting that she was impressed by how much initiative I took in terms of spending time with the kids.
I should mention that since 1998, Camp Negev (not its real name) has changed drastically and the leadership is much better. It is no longer acceptable to leave the kids unattended or to smoke weed at the camp. As I understand it, it was in or around 2002 when some serious changes began to take place. I couldn't tell you exactly when it happened, because I could not get hired as a counselor. Further down the line I learned that there is Asperger's awareness training that takes place during orientation. However, since 1998 I have still seen this dynamic of "getting caught with one's pants down" in the real world. If anybody besides me gets caught screwing up, no big deal. It's an isolated incident. If I do? People read way too much into it and what my intentions are and what it means about me. In some cases, this type of misunderstanding has gotten me fired from jobs.
And finally, one thing I began to notice in the summer of 1998 that sticks with me to this day is that when I think a situation is going downhill or that something is going on regarding me that I'm not aware of, I'm usually right. I may have had difficulty with social cues, but during the summer of 1998 I picked up on subtle cues that led me to correctly believe that people were scrutinizing me beyond the superficial (ie beyond "prove that you can work with kids"). I knew very clearly when they said one thing and all I was hearing was the tip of the iceberg. "We have some concerns." There was a time when I would have read that as, "We have some concerns." In fact, I think many people would. But ever since 1998, that word has been more loaded for me. "Concerns" means, "You are a problem and we are watching every move you make. And everything you do is subject to microscopic examination." Beyond this example, I can't articulate exactly what I mean. But I've seen it a number of times since then. I have had to learn to read more deeply into things than most people, because they don't have a history of social failure.
Despite everything, the summer of 1998 was overall a fun, memorable summer for me. But I still won't forget the frustration I felt in certain situations. And because of the lessons I took away from it that are still relevant, it does not seem as long ago as it should.
In June of 1998, just a few weeks before leaving for what (unknown to me) would be my final summer at Camp Negev, I made a huge discovery. Or, that is, I thought I did. After years of wondering what it was about me that was so different, wondering why I was always off in "my own world" and why I got obsessed with movies as well as any guy I had a crush on, I literally woke up one morning and thought to myself, "I have Obsessive-Compulsive Disorder." At the time, it was the closest I could come to labeling myself. Asperger's Syndrome was barely known at the time, and not having heard of it, OCD seemed like the only logical explanation. After a couple years, I realized that wasn't it (and, of course, I didn't know what it was). I compare my experience to that of many transgender people, who have not yet heard the term "transgender", initially misidentifying themselves as gay. Kim Pearson, of Trans Youth Family Allies, calls this mislabeling "in the absence of reflection." The mother of an FTM transgender child, in an interview she talked about her son initially coming out as a lesbian "in the absence of reflection." In other words, her child looked out into the world and didn't see any examples of himself. He felt masculine and thought, "Masculine females are lesbians. That must be what I am." But that label never felt right to him. It was only when he heard the term "transgender" that everything finally began to make sense to him; he realized that he was actually a boy trapped in a girl's body. In my case, I looked out into the world, didn't see examples of myself, and thought, "People who get obsessed with things have OCD. That must be what I have."
Although the OCD label proved to ultimately be wrong, the attempt at diagnosing myself that summer made me aware of something: some people are simply HARDWIRED DIFFERENTLY. This had never occurred to me before in my life. I realized, "If I'm hardwired differently and I know this, I can understand myself better." I came to Camp Negev that summer fully ready to not only embrace this understanding but also to be the best C.I.T. I could be-- at age 17, it was time for me to enter the C.I.T. program at camp. As it turned out, however, camp wasn't ready for me to take this next step. It turned out that the only reason that I got accepted to the program was because my counselor friend and mentor, Jonas, demanded that the camp accept me, which they were originally not going to do. I was allowed to be there, but they would not let me work with kids. For the first time, I realized, "They won't let me work with kids. It's not because I'm a malicious person or someone who would hurt the kids, but it's because I'm hardwired differently and they don't understand me."
The other C.I.T.s, however, had known me already for three years and did understand me. Most of them thought the whole thing was unfair. The camp director told me I could work with kids second session (halfway through the summer) if I proved able to work with them. Do you sense a Catch-22 here? How could I possibly prove myself if they didn't want me near the kids? In fact, I recall constantly referencing Catch-22 throughout that summer. I was given kids second session, but apparently only after director and some other counselors were up until 3:00 A.M. discussing it.
It was around this time that I began to be disillusioned with the social politics of Camp Negev and also see a greater hypocrisy in the world. I could have understood the concerns of the counselors and the director if most people on staff were responsible, caring counselors. But they weren't. Most of them simply worked at camp to be with their friends. I was appalled by some of their conduct. Many of them left their kids alone in the cabins and went off to the staff lounge to smoke weed. Some of them were nasty to the kids. I found this hypocritical at a camp that specifically preached social justice. In fact, during second session when I was at a staff meeting, a group of counselors was talking about an eleven-year-old kid with four-doses-of-Ritalin-per-day ADHD. They said that he was a horrible kid, that he was hopeless, and that he deliberately misbehaved. I did not take this lying down. I told the counselors that the kid was just that-- a kid. He was a kid with ADHD and, thinking of my own epiphany at the beginning of the summer, one who was hardwired differently. I tried to explain that to them but they just laughed at me. What made this even more disgusting was that the meeting was in a cabin cubby and some of the kids were in the next room. I warned the counselors that the kids might be listening. I know I would have at age eleven. Throughout the summer, many of these same counselors were very short with this kid who, as far as I could see, was well-meaning and not malicious. I remember thinking, "I hope when it's his turn to be a C.I.T. in 2004 he doesn't have to go through what I'm going through" (fortunately, years later I learned that he got into the C.I.T. program with no trouble).
From that summer I also took away another lesson that still resonates: It's not what your intentions are, or even what your actions are. It's about how well you cover up any mistakes that you make. Let's use the metaphor of getting caught with your pants down. Socially savvy people get caught not just with their pants down, but peeing or pooping on the floor, masturbating, you name it. They laugh, wipe their hands off, and pull up their pants. No big deal. As someone with Asperger's, when my metaphorical pants fell down (accidentally, of course) at camp, I could not pull them back up with the kind of finesse that the others could. To them, it looked like I committed a serious infraction. This is metaphor of course, but in terms of what actually happened? It was okay for these counselors to go off and smoke weed instead of watching the kids, or to browbeat a kid with ADHD because that was a socially acceptable thing to do. But if I tripped and fell and reflexively said, "Oh, shit!" when a kid was within earshot? Forget it. The whole universe collapsed on itself and within an hour everyone at camp knew and I was read as an unstable person who shouldn't be near kids. Never mind that these kids really liked me. I recall one fellow C.I.T. commenting that she was impressed by how much initiative I took in terms of spending time with the kids.
I should mention that since 1998, Camp Negev (not its real name) has changed drastically and the leadership is much better. It is no longer acceptable to leave the kids unattended or to smoke weed at the camp. As I understand it, it was in or around 2002 when some serious changes began to take place. I couldn't tell you exactly when it happened, because I could not get hired as a counselor. Further down the line I learned that there is Asperger's awareness training that takes place during orientation. However, since 1998 I have still seen this dynamic of "getting caught with one's pants down" in the real world. If anybody besides me gets caught screwing up, no big deal. It's an isolated incident. If I do? People read way too much into it and what my intentions are and what it means about me. In some cases, this type of misunderstanding has gotten me fired from jobs.
And finally, one thing I began to notice in the summer of 1998 that sticks with me to this day is that when I think a situation is going downhill or that something is going on regarding me that I'm not aware of, I'm usually right. I may have had difficulty with social cues, but during the summer of 1998 I picked up on subtle cues that led me to correctly believe that people were scrutinizing me beyond the superficial (ie beyond "prove that you can work with kids"). I knew very clearly when they said one thing and all I was hearing was the tip of the iceberg. "We have some concerns." There was a time when I would have read that as, "We have some concerns." In fact, I think many people would. But ever since 1998, that word has been more loaded for me. "Concerns" means, "You are a problem and we are watching every move you make. And everything you do is subject to microscopic examination." Beyond this example, I can't articulate exactly what I mean. But I've seen it a number of times since then. I have had to learn to read more deeply into things than most people, because they don't have a history of social failure.
Despite everything, the summer of 1998 was overall a fun, memorable summer for me. But I still won't forget the frustration I felt in certain situations. And because of the lessons I took away from it that are still relevant, it does not seem as long ago as it should.
Wednesday, May 14, 2014
I'm Not Asexual, but...
A bit over a month ago, someone who I do not know well expressed interest in the book about Asperger's that I'm trying to get published, so I sent it to him to read. After reading about half of it, he gave me a little feedback and commented on my being asexual. I explained to him that I am not asexual, that I'd been attracted to people before but just hadn't been in a relationship. He said from reading my book that he knew I'd had "crushes" on people, but that there didn't seem to be very lustful (to clarify, he was simply commenting on it and did not mean it as a criticism).
Well, it's true. Any crush I have ever had has not been very lustful, at least not lustful in the way most people experience them. Let me explain:
First, let me say that online dating would never work for me. Why? Most people look at a profile, see that the person has similar interests and think, "Hey, this is a possibility." But usually they first feel something from looking at that person's picture. "Wow, he's hot!" or "Wow, she's sexy!" And then they look at the interests. And then they get together for a date (and possibly sex as well). And then it may or may not work out. In other words, lust comes first, then feelings about the person as a person come next. For me, it's the complete opposite.
Whenever I've felt attracted to a guy, it has always happened after having a few in-depth conversations with him. After I realize he's interesting and intelligent, then I might start to think, "Oh, he's hot!" And then other... thoughts... eventually follow. But this just does not happen very often. I know plenty of guys whom I find very interesting but, for whatever reason, have not resulted in Cupid's arrow. If I rarely feel lust, and if lust only comes after knowing the person somewhat instead of before, then it stands to reason that I, of course, have not been in a relationship. The fewer attractions I feel, the less likely the chance of one being reciprocated. And yes, my never having been in a relationship means exactly what you think it means. There was one guy who returned my feelings, but he was only in the states for a few months; we were friends with (limited) benefits. I was almost 19 at the time that I knew him, and he is the only guy I've ever kissed, let alone had any other (limited) "experiences" with. Though perhaps had he been around longer something might have happened. I don't know. In any case, at the time I wasn't ready for sex, and he didn't push it.
Apparently, it is very common for people with Asperger's Syndrome to either be asexual or, like me, just rarely attracted to people and to experience attraction in the "reverse" way that I do: person first, lust second. However, when they do get attracted to people, they tend to become very obsessive. That, of course, causes a lot of pain when the person with the crush sees the person they yearn for avoiding them at all costs. For this reason alone, I hate getting attracted to people if it's not reciprocated. Hey, I know people like to say, "Well, just enjoy the feelings you have for them." For us Aspies it doesn't work that way. Imagine how you'd feel if you hadn't eaten in days and there was a three-pound bacon cheeseburger constantly a few feet away from you... and you were told you weren't allowed to eat it but to just enjoy the smell. Well, that's what it's like for us. Mercifully, my last crush was in 2008-- six years ago as of this writing-- and what a shit storm that was. I won't get into it.
Just for the record-- and I know people are going to ask me this because they always do-- my being rarely attracted to people is simply how I'm hardwired. Many people assume that if you are asexual or comparatively so then you must have had some bad experience, must be religious or have some moral objection, or must be repressed in some other way. No, I was not sexually abused. No, I am not religious. I don't care what other people do as long as it's between consenting adults. No, I am not repressed. When I was living in New York City, I went to the GLBTQIA center one day to listen to a guest speaker. I mentioned that I have only been attracted to eight people in my entire life. He said something to the effect of, "Well, that tells me that you have some kind of sexual problem." I don't remember his exact words, but that was the gist of it. I told him, "Excuse me, you don't know anything about me. And you know what? I think your theory sucks!"
Well, it's true. Any crush I have ever had has not been very lustful, at least not lustful in the way most people experience them. Let me explain:
First, let me say that online dating would never work for me. Why? Most people look at a profile, see that the person has similar interests and think, "Hey, this is a possibility." But usually they first feel something from looking at that person's picture. "Wow, he's hot!" or "Wow, she's sexy!" And then they look at the interests. And then they get together for a date (and possibly sex as well). And then it may or may not work out. In other words, lust comes first, then feelings about the person as a person come next. For me, it's the complete opposite.
Whenever I've felt attracted to a guy, it has always happened after having a few in-depth conversations with him. After I realize he's interesting and intelligent, then I might start to think, "Oh, he's hot!" And then other... thoughts... eventually follow. But this just does not happen very often. I know plenty of guys whom I find very interesting but, for whatever reason, have not resulted in Cupid's arrow. If I rarely feel lust, and if lust only comes after knowing the person somewhat instead of before, then it stands to reason that I, of course, have not been in a relationship. The fewer attractions I feel, the less likely the chance of one being reciprocated. And yes, my never having been in a relationship means exactly what you think it means. There was one guy who returned my feelings, but he was only in the states for a few months; we were friends with (limited) benefits. I was almost 19 at the time that I knew him, and he is the only guy I've ever kissed, let alone had any other (limited) "experiences" with. Though perhaps had he been around longer something might have happened. I don't know. In any case, at the time I wasn't ready for sex, and he didn't push it.
Apparently, it is very common for people with Asperger's Syndrome to either be asexual or, like me, just rarely attracted to people and to experience attraction in the "reverse" way that I do: person first, lust second. However, when they do get attracted to people, they tend to become very obsessive. That, of course, causes a lot of pain when the person with the crush sees the person they yearn for avoiding them at all costs. For this reason alone, I hate getting attracted to people if it's not reciprocated. Hey, I know people like to say, "Well, just enjoy the feelings you have for them." For us Aspies it doesn't work that way. Imagine how you'd feel if you hadn't eaten in days and there was a three-pound bacon cheeseburger constantly a few feet away from you... and you were told you weren't allowed to eat it but to just enjoy the smell. Well, that's what it's like for us. Mercifully, my last crush was in 2008-- six years ago as of this writing-- and what a shit storm that was. I won't get into it.
Just for the record-- and I know people are going to ask me this because they always do-- my being rarely attracted to people is simply how I'm hardwired. Many people assume that if you are asexual or comparatively so then you must have had some bad experience, must be religious or have some moral objection, or must be repressed in some other way. No, I was not sexually abused. No, I am not religious. I don't care what other people do as long as it's between consenting adults. No, I am not repressed. When I was living in New York City, I went to the GLBTQIA center one day to listen to a guest speaker. I mentioned that I have only been attracted to eight people in my entire life. He said something to the effect of, "Well, that tells me that you have some kind of sexual problem." I don't remember his exact words, but that was the gist of it. I told him, "Excuse me, you don't know anything about me. And you know what? I think your theory sucks!"
Tuesday, May 13, 2014
New York City- An Aspie's Paradise
If anybody were to ask me about the perfect place for a person with Asperger's Syndrome to live, my answer would be very simple: New York City.
Why New York City?, you ask. Isn't it too crowded and overwhelming for people with sensory issues? Yes, but not everybody with Asperger's Syndrome has those issues. In fact, a good portion of them-- including me-- don't. And just to clarify, for many of us (me, at any rate) our discomfort with crowds is not about simply being around large numbers of people, but expecting to interact with them, all at the same time. For as long as I can remember, people have told me that I'm great in one-on-one or small group situations, but not so great in large group situations, such as parties. In fact, at parties, I usually befriend one or two people and go off in a corner with them to talk. Or if I need some break time, I just sit in the corner and draw. Asking someone with Asperger's Syndrome to enjoy large social groups is like asking a Catholic nun to be John F. Kennedy.
But enough of that tangent, on with my endorsement of New York City as an Aspie's paradise. I lived in New York City for 13 1/2 years and for me it was incredibly easy to to forget that I had a condition that many regard as a disability (someone I met online who moved there from Maine for about a year made the same comment). Why? The answer is simple, I think. New York City is as diverse a city as you can get. There are all kinds of people who live there. I don't mean people of different ethnic backgrounds or even people from different religious affiliations (though there are those too). There are people with such a wide variety of temperaments and personalities, much more than I've seen anywhere else. I live in Boston now (long story), and while it's diverse enough that I feel comfortable, it's not quite the same as New York. Hell, a ride on the subways in each city will give you the idea of what I'm talking about.
You go to the F line in Brooklyn, for example. You wait in a small line to get through the turn style during rush hour. Someone can't find their Metrocard, and the person behind them butts in front of them. Typical New York impatience, but that's okay Everyone is used to it. You get on the train, heading for Manhattan. Five minutes in, someone gets on and starts screaming about Jesus and end times. A few minutes later, someone else begs for money. At the first stop in Manhattan, a group of guys gets on and does a wild performance for money, complete with back flips. Later, a man comes in dressed as a clown and does the nail-in-the-nose bit, also for money. As all these colorful people continue to board the train, you look around at everyone riding the subway. Some are trying to read and can't concentrate with all the noise. They roll their eyes. Others have a good laugh. Others still are ambivalent. In terms of the panhandler, many feel sorry for him and give him money. Trips on the New York City subway are never dull. And did I mention that the people who are riding the subway also have a variety of temperaments? Of course! Otherwise there wouldn't be such a wide variety of reactions!
We all know the stereotype, too, of there being a ton of crazy people in New York City. That said, I think it's also easier for the average person there to put things into perspective. Whereas a quirky behavior by someone with Asperger's might be viewed as "weird" or "scary" elsewhere, it might simply be viewed as "quirky" or even just part of the patchwork of personalities in New York City. With so many people acting unusual, it's just a lot easier to see the difference between "quirky" and "crazy". Plus, there are a lot of organizations that make it easier to find and make friends. There is the GLBTQIA center on 23rd Street, for example. How about the Asperger's support groups? Or groups for atheists? New York is also a place where I met a lot of polyamorous people (I'm not inclined that way, but my point is that New York is just very accepting of that kind of openness). And New York Public Library even hosts what's called an Anti-Prom, a prom for GLBTQIA teens. I suspect that New York might be the only major American city whose library would host such an event (except for San Francisco and, possibly, Chicago). You know all the stories about libraries being blackmailed by the religious right.
As for Boston? Well, there aren't lines for the subways, and in the six months that I've been here I saw a total of one solicitor and one "crazy person" on the trains. There's just not the daily exposure to oddness that there is in New York. Again, I think Boston is pretty accepting but I don't think in the same way that New York is. I don't know if, for example, the library would host an openly GLBTQIA prom. It just isn't nearly as diverse and I think Boston has somewhat more of a religious hold. But again, let's put this in perspective. Last year I lived in a small rural town in Maine for about five months. I hated it. It was homogenous-- lots of white, Christian people. Very, very few Jews, let alone those with any other religious background. And as for atheists? I'm sure they were in the closet along with the gays who live there. In fact, to meet interesting people I had to drive to Portland-- 75 miles each way. Everybody who was my age in the town in which I lived was married and had 2.5 kids. At one point, I posted on my Facebook status, "I miss NYC so much it hurts." It did hurt. I did not feel welcome, and I felt like many people thought there was something wrong with me. I did not feel that way in New York at all. As I said, in Boston I feel welcome, but let's just say that it's slightly easier for me to remember that I have Asperger's Syndrome, something many people regard as a disability.
So fellow Aspies, go to New York. It truly is an amazing city.
Why New York City?, you ask. Isn't it too crowded and overwhelming for people with sensory issues? Yes, but not everybody with Asperger's Syndrome has those issues. In fact, a good portion of them-- including me-- don't. And just to clarify, for many of us (me, at any rate) our discomfort with crowds is not about simply being around large numbers of people, but expecting to interact with them, all at the same time. For as long as I can remember, people have told me that I'm great in one-on-one or small group situations, but not so great in large group situations, such as parties. In fact, at parties, I usually befriend one or two people and go off in a corner with them to talk. Or if I need some break time, I just sit in the corner and draw. Asking someone with Asperger's Syndrome to enjoy large social groups is like asking a Catholic nun to be John F. Kennedy.
But enough of that tangent, on with my endorsement of New York City as an Aspie's paradise. I lived in New York City for 13 1/2 years and for me it was incredibly easy to to forget that I had a condition that many regard as a disability (someone I met online who moved there from Maine for about a year made the same comment). Why? The answer is simple, I think. New York City is as diverse a city as you can get. There are all kinds of people who live there. I don't mean people of different ethnic backgrounds or even people from different religious affiliations (though there are those too). There are people with such a wide variety of temperaments and personalities, much more than I've seen anywhere else. I live in Boston now (long story), and while it's diverse enough that I feel comfortable, it's not quite the same as New York. Hell, a ride on the subways in each city will give you the idea of what I'm talking about.
You go to the F line in Brooklyn, for example. You wait in a small line to get through the turn style during rush hour. Someone can't find their Metrocard, and the person behind them butts in front of them. Typical New York impatience, but that's okay Everyone is used to it. You get on the train, heading for Manhattan. Five minutes in, someone gets on and starts screaming about Jesus and end times. A few minutes later, someone else begs for money. At the first stop in Manhattan, a group of guys gets on and does a wild performance for money, complete with back flips. Later, a man comes in dressed as a clown and does the nail-in-the-nose bit, also for money. As all these colorful people continue to board the train, you look around at everyone riding the subway. Some are trying to read and can't concentrate with all the noise. They roll their eyes. Others have a good laugh. Others still are ambivalent. In terms of the panhandler, many feel sorry for him and give him money. Trips on the New York City subway are never dull. And did I mention that the people who are riding the subway also have a variety of temperaments? Of course! Otherwise there wouldn't be such a wide variety of reactions!
We all know the stereotype, too, of there being a ton of crazy people in New York City. That said, I think it's also easier for the average person there to put things into perspective. Whereas a quirky behavior by someone with Asperger's might be viewed as "weird" or "scary" elsewhere, it might simply be viewed as "quirky" or even just part of the patchwork of personalities in New York City. With so many people acting unusual, it's just a lot easier to see the difference between "quirky" and "crazy". Plus, there are a lot of organizations that make it easier to find and make friends. There is the GLBTQIA center on 23rd Street, for example. How about the Asperger's support groups? Or groups for atheists? New York is also a place where I met a lot of polyamorous people (I'm not inclined that way, but my point is that New York is just very accepting of that kind of openness). And New York Public Library even hosts what's called an Anti-Prom, a prom for GLBTQIA teens. I suspect that New York might be the only major American city whose library would host such an event (except for San Francisco and, possibly, Chicago). You know all the stories about libraries being blackmailed by the religious right.
As for Boston? Well, there aren't lines for the subways, and in the six months that I've been here I saw a total of one solicitor and one "crazy person" on the trains. There's just not the daily exposure to oddness that there is in New York. Again, I think Boston is pretty accepting but I don't think in the same way that New York is. I don't know if, for example, the library would host an openly GLBTQIA prom. It just isn't nearly as diverse and I think Boston has somewhat more of a religious hold. But again, let's put this in perspective. Last year I lived in a small rural town in Maine for about five months. I hated it. It was homogenous-- lots of white, Christian people. Very, very few Jews, let alone those with any other religious background. And as for atheists? I'm sure they were in the closet along with the gays who live there. In fact, to meet interesting people I had to drive to Portland-- 75 miles each way. Everybody who was my age in the town in which I lived was married and had 2.5 kids. At one point, I posted on my Facebook status, "I miss NYC so much it hurts." It did hurt. I did not feel welcome, and I felt like many people thought there was something wrong with me. I did not feel that way in New York at all. As I said, in Boston I feel welcome, but let's just say that it's slightly easier for me to remember that I have Asperger's Syndrome, something many people regard as a disability.
So fellow Aspies, go to New York. It truly is an amazing city.
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