Saturday, February 28, 2015

What I Knew Part II: A Lot More Than You Think!

My previous blog post talked about the perception of people with Asperger's as gullible and how, if anything, I was more vigilant than most people need to be. The thing is, I knew and understood a lot more than many people (including my own parents, of course) gave me credit for, and I don't just mean in the realm of knowing when I was being manipulated.

Looking back, it seems that adults thought of me as so detached from reality, almost as if they saw me as a goldfish swimming aimlessly through a bowl and repeatedly hitting my head on the side. It seemed that they thought that I didn't know that I was hitting my head, let alone know that most goldfish don't do this. But I knew. I knew and understood much more than they realized. And despite what they thought, I was very aware that I was different.

By the time I was eleven, I had some vague idea that I was being looked at, that something was going on behind my back, that adults were talking about me. I was well aware that my parents thought there was something psychologically wrong with me. So around that time when I started seeing a psychologist, Dr. Klein (not his real name), I knew I had a lot to be suspicious of. My mother usually talked with Dr. Klein alone for five minutes before my session started. But one day she was in there for almost the entire hour that was supposed to be mine. After I realized that a long time had passed, I knew that something was going on, that they were talking about me. I did what any suspicious eleven-year-old would do: I sat outside the door and eavesdropped. 

I remember Mom saying in exasperation, "She doesn't tell me what she wants." I knew exactly what she was referring to. One day (maybe the same day; I don't remember) before school I was looking for my bra. I had just started "developing", so needing a bra was a new and embarrassing thing for me. Like any adolescent girl, I didn't want my father to hear me talking about it. I found my mother and whispered, "I need my bra." She couldn't hear me. "What?" she had asked in a very loud voice. "My bra," I whispered again.  She still didn't hear me. She kept talking more and more loudly. Not wanting Dad to overhear, in a normal voice I said something like, "My... you know." Mom didn't figure it out. So there she was that afternoon, telling Dr. Klein that for some reason something was preventing me from communicating a simple request. The fact that it hadn't occurred to Mom or Dr. Klein that I would eavesdrop and the fact that Mom couldn't figure out that I had been trying to tell her without Dad overhearing that I was looking for my bra speaks volumes: It shows just how little adults thought I knew and understood. 

Around the same time, I had started drawing violent Addams Family cartoons. I knew not to draw violent pictures in school. But Mom forbade me from drawing them at all because for some reason she was inordinately convinced that I was indeed drawing them in school. Of course I knew at age eleven that there were certain activities appropriate for different contexts! I may have had trouble with some of these, but not all of them as my parents thought.

When I was turning eighteen, I was friends with a girl, Jenna (not her real name), who was fooling around with Wicca. When Mom found out, she yelled at me to stay away from her. Recently I got back in touch with Jenna (as detailed in "Why Do You Keep Dredging These Things Up"?) and I mentioned the Wicca incident to my parents. Neither of my parents remember the incident or even who Jenna was. Mom said that she was likely scared that I would join a cult (I do remember this being the case; Dad and I had had a conversation shortly after the incident). I recall feeling insulted that Mom would think I would be stupid enough to do something like that. When I brought up the incident a few weeks ago, Mom mentioned that I was a "kid with problems" and that was why she had reacted the way she did. I was a month shy of my eighteenth birthday at the time. Of course I knew that cults were dangerous! The Heaven's Gate suicide had happened a little over a year before, and I remember thinking that it was horrible and that it was amazing how easily people could be indoctrinated. And my parents knew that I had had these thoughts because we'd talked about it at the time (the absurdity of thinking that trying out Wicca is a direct pathway to a cult is another tangent I won't get into here). 

I often missed social cues, but I was also better at reading between the lines than many people gave me credit for. In the summer of 1998, when I was seventeen and in the C. I. T. program at Camp Negev, my counselors told me on the first day that they were not letting me work with kids. When I asked why, they said that they wanted me to do "a special job". Suspicious that there was something else going on, I forced it out of them. "It" was that they were not comfortable letting me work with kids. Did they really think I wasn't going to know that there was something they weren't telling me? Did they really not think I would force it out of them? Throughout the day, I was quite upset and went to one of the head staff about it. When I asked her why I was being kept from the kids, she told me that people "had concerns". But I had had enough experience to know that someone telling me that they "had concerns" was a euphemism for something more serious. I had enough experience to know that it could mean, "You're weird", "We see you as a problem," "We don't want you here", or all of the above and more. Long before that, I knew when people were keeping something from me, or not telling me the entire story. "Forcing it out of them" is something I have long since had down to an art. Why wouldn't I, if experience taught me that a lot went on about me behind closed doors?

What I Knew Part I: Asperger's and Gullibility

Probably one of the most prevailing stereotypes is that people with Asperger's Syndrome are remarkably gullible. Many books for parents of kids with Asperger's implore them to make sure their kids know when someone is trying to manipulate them in any way. Parents are told that they will have to constantly give their kids a reality check, because their kids often don't know what is going on.

Growing up, my problem was the exact opposite. If anything, my bullshit radar was on high sensitivity. By the time I was eight or nine, I usually knew when people were trying to manipulate me, whether in the form of being sarcastic (and people with Asperger's are not supposed to be able to understand sarcasm??) or in the form of sounding overly sweet in some way. And actually, my own parents often accused me of being paranoid. There's an old expression: Just because you're paranoid doesn't mean that they're not out to get you. My teachers and parents often felt that other kids were genuinely reaching out to me and I was just nastily blowing them off. Occasionally that was true (and why shouldn't I be extra vigilant if experience told me that most people wanted to humiliate me?), but an overwhelming majority of the time I knew exactly what was going on, that other kids were trying to set me up or were mocking me in some way. The fact that my teachers and parents rarely believed me made it more difficult.

For example, when I was in 7th grade (age 13), I was very uncomfortable changing for gym class in front of everyone else in the locker room, so I changed in a shower stall. One day, a classmate came over to me and asked in a mockingly sweet tone, "Excuse me, can I please come in there? I want to change and I don't want anybody to see my panties." Of course I saw that she was mocking the fact that I was uncomfortable changing in front of everyone else. A stereotypical person with Asperger's who takes everything literally might interpret this as someone genuinely wanting to come into the stall with the person already there and change so that the other girls don't see whatever cutesy patterns are on her underwear. And that's another thing-- the panties reference. I knew she was making fun of what one might see as the silliest, most childish reason for not wanting to change in front of others. I think we all remember being six years old and telling each other, "Ooh, I can see your underwear!" or "Nice underwear!" or "Ha ha, you have Care Bears underwear!" She was implying that my not wanting to change in front of others (which had nothing to do with underwear, a poor body image, or even modesty but rather just the simple fact that I was not used to it) was babyish. I understood as quickly as any neurotypical person, and I told the girl to go to hell.

That evening I told my parents about it and also mentioned that I had told the girl to go to hell. I told them that the girl was being sarcastic (I think facetious is a more appropriate term) when she asked to join me in the stall. Dad's response was, "It sounds like you were the one who was being sarcastic. You need to give other people a turn if they want to change in there." Dad somehow missed the implications of the girl's panties comment and the fact that she said that she wanted to come in there with me.

There were many other times throughout my childhood when other kids would pretend to be nice to me just to fuck with me, as the expression goes, and I saw right through their act. If someone told me that they loved my out-of-control-Orphan-Annie-thick hair that I hated, I knew they were being sarcastic. If a boy came up to me and said, "Oh, baby, will you go out with me?" I knew he saw me as a loser and thought it was hilarious to ask me out and call me baby. I knew that if kids who'd bullied me all year long asked me if they could sign my yearbook (or vice-versa), they were just entertaining themselves and their group of friends. I refused to let them sign my yearbook, and I refused to sign theirs. Of course, my parents would hear about these incidents and think that the kids were being "nice" and that I was being "paranoid" and blowing them off in some way.

I recall that a number of times Mom commented that people tried so hard to be nice to me and that they were going to stop being nice to me if I kept being paranoid. She had absolutely no clue, and I knew exactly what was going on, exactly what I was looking at. But by 9th grade (age 15), I really began to second-guess myself and wonder if Mom was right. So for the rest of high school and in early adulthood, when I knew damn well that others were fucking with me, I often played along just in case they weren't fucking with me. Also, I often ended up playing along because I didn't know what else to do. It was a bit embarrassing to say, "Yeah, I know you're fucking with me." In 9th grade I missed a day of gym class. When I came in the next day, a girl said, "We missed you so much and we needed you on our team." I was always terrible at sports. But I knew getting visibly upset and saying, "Go to hell" or some other comeback wouldn't fix anything. So instead I said something like, "I'm not that good." I didn't know what else to say. Guess what? This playing along made me look, well, gullible to many people.

Mom often commented that I never took advice from people (this wasn't true, but that's another blog post altogether). So with her comments about my not being nice when people reached out to me in mind, I threw caution to the wind one evening when I got an odd phone call from someone. The girl on the other end of the line said her name was Margaret and that she was my best friend from 3rd grade (age 9). Every antenna in my head went up immediately. My best friend in 3rd grade was not named Margaret; in fact I had never known anybody named Margaret. But I thought about my mother's comments about not being nice when people reached out to me and decided to be nice. I asked the girl what she'd been doing for the past six years and what her phone number was. She told me she'd just moved into a new house that day and that she also was a supermodel. Once again, I knew this sounded ridiculous. But, again, my mother's advice was in my head.

"Margaret" said that she had a boyfriend who was trying to break up with her and she didn't know what to do. Then she said she was thinking of committing suicide. I still thought she was bullshitting me but... what if she wasn't? So I told her something like, "No, don't kill yourself. It's not worth it." At that point, my parents (who had been out all evening) had just come home and listened in on the final call, the one about suicide. After I got off the phone, my parents informed me that it was indeed a prank call. "How could you fall for something like that?" Mom demanded. Well, here's her answer. I was trying to take her advice.

In his memoir Atypical, fellow Aspie Jesse Saperstein relates a story of when some classmates played a cruel prank on him in high school. He received an email one day from a girl named Liz. She said that she had always thought he was a nice person but that she was too shy to approach him at school. When I read much of Jesse's (I'm on a first name basis with him; he's my age and I hung out with him one time last summer when he was visiting Boston for a book tour) memoir, I felt like I was reading my own story. But this is where Jesse and I part ways: Had somebody sent me an email like that, I would have wondered how they got my email address and would have been very suspicious of their motives. In fact, in high school someone who I didn't know actually did send me an instant message online. This person was real, and we chatted briefly, but I was very careful about what I said, lest it be used as ammunition against me.

Jesse wasn't suspicious, however, and he believed that Liz was his close friend. In fact, Jesse even went out on a date with her. But the problem was that Liz wasn't even real. The girl on the "date" was just a friend of the bullies who went to another school,  an actress playing the part of a fictional character. The prank went on for six months until Jesse found out the truth.

Although many kids with Asperger's-- including Jesse when he was younger-- easily fall for pranks, many also don't. As I've said, I was hypervigilant during my school years. But as I've also said, I sometimes played along because I didn't know what else to do. I now wonder if the stereotype of gullibility really is based on a pervasive characteristic and that I'm the exception to this, or if the people who write these books assume that some of the kids who play along, as I did, are actually gullible. It's worth asking. It could be that people are interpreting the thought processes of Aspies from very superficial behaviors.

After all, it was only recently that popular psychology overturned the myth about people with Asperger's lacking empathy.

Sunday, February 15, 2015

"Why do You Keep Dredging this Stuff Up?"

I had a really hard time making friends when I was in high school. My only friends were the ones I went to Camp Negev with, except for my then-best friend, Melanie. But that was until I met Jenna. I met Jenna (not her real name) in the fall of 1997, age 17, at one of Melanie's parties. Jenna and I hit it off immediately. We quickly got into a discussion about the absurdity of enforced gender roles. I recall that she said, "If a guy came in here in a pretty dress my only reaction would be to ask him where he got it." We exchanged contact information. We called each other and chatted on the then-new AOL Instant Messenger all the time.

I couldn't see Jenna very much, however. She lived in Northeast Philadelphia and I lived about an hour away in the suburbs. I didn't have my driver's license (I didn't feel ready to drive yet) and neither did Jenna (I forget why she didn't). The friends she saw on a regular basis were the ones she went to school with and who could come to her house and pick her up. I only got to see her at parties or the occasional sleepover. It didn't help that her father was a control freak, just like Melanie's mother, albeit in a different way. Melanie's mother was a control freak in that she wouldn't let Melanie get combat boots because they were "too masculine" (my mother got me a pair for my 18th birthday!), told her she couldn't refer to a crazy person as a "nutcase" as it was "too sexual" (oddly enough, "nutball" was okay), and that she wouldn't let her date black people. Yes, you heard me correctly. Melanie's mother more or less groomed Melanie into becoming just like her. Today she is living with her husband, kids, and her parents in the small Northeast Philadelphia house that she grew up in. She also cut me off and didn't invite me to the wedding, and I'm sure her mother had a lot, if not everything, to do with that.

Jenna's father was different. He was an alcoholic who had a drug-addicted girlfriend. Jenna's parents were divorced, and she had to live with her father because he was paying the tuition for her private school. Jenna's father rarely let Jenna go anywhere or do anything. No, this was not a case of a concerned father trying to quash his daughter's teenage rebellion. This wasn't even a case of a father trying to guide his daughter. In fact, he didn't guide her at all, and Jenna wasn't rebelling any more than any other teenager. This was, I think, a case of a "do as I say, not as I do" mentality. Not that Jenna was drinking or doing drugs. She absolutely wasn't. Like me, she was completely anti-drugs, especially since she saw what alcoholism and drug abuse could do to people.

In early 1998, on one of the rare instances that Jenna was able to spend time with me, she spent the night at my house. We were up until 3:00 in the morning talking intensely about what I now know is called evolutionary psychology. That is, I had come to the conclusion that everything we do, directly or indirectly, is based upon the instinct to reproduce-- even if the person doesn't consciously want children. And as a teenager experiencing an existential crisis, I naively thought that this was a new, revolutionary theory. Someone should have gently guided me towards books like The Selfish Gene by Richard Dawkins and, of course On the Origin of Species by Charles Darwin. I frantically paced my room, wildly gesticulating, and saying things like, "This is obviously why there are enforced gender roles! This is why bullying happens! It's all based on the ultimate goal-- to reproduce!" I began to realize that this was why I was paying the price for being different and having a hard time making friends. How about The Nurture Assumption by Judith Rich Harris and (the not-yet published) The Blank Slate by Steven Pinker?

I then confided in Jenna one of the things that led me to thinking about this sort of thing-- the  previous summer on a group trip to Israel in which I had an obsessive crush on Chuck, one of my counselors. I was embarrassed about how I'd handled it. I muttered something about how the instinct to reproduce had overtaken me even though I hadn't tried to be anything more than friends with Chuck. If I remember correctly, this was the first time I'd ever told anybody that story. For months I had kept it under wraps as I came to the realization that I'd handled this crush badly by following Chuck everywhere. It was a huge confession for me: "I, Julie, am obsessive when I get crushes on people."  I told Jenna this embarrassing story because I knew I could. I knew she'd listen. I knew she'd understand. And she did. In many ways, Jenna understood me better than many people I knew, including my friends from camp. And even though Melanie was my "official" best friend, I knew deep down Jenna and I had a lot more in common. Both of us had intellectual sides, both of us questioned reality. And Jenna affirmed me in a way that many other people didn't.

I lost touch with Jenna about ten years ago. We didn't have a fallout; life just happened. I think she was still living with her asshole father in Philadelphia the last time I talked to her, either in 2004 or 2005, and wasn't able to leave the city, let alone to go to New York, where I was then living. We did occasionally talk online at the time, however. On and off over the years since she stopped coming onto AOL Instant Messenger I tried to find her. I eventually came to the conclusion that if she was on Facebook it was under a pseudonym. So I did some heavy searching (and believe me, it wasn't easy, but I have my ways) and tracked down her snail-mail address. She lives on the other side of the country (I'm not going to mention where, to further protect her privacy). I sent her a postcard with my contact information on it. I had no doubt that if she got the postcard she would contact me. I didn't think for a second that she would pull the same elitist stunt that Melanie did.

And I was right. Within minutes of getting the postcard, Jenna friend requested me on Facebook and texted me on my cell phone. It turned out she was using a different name, but not as a pseudonym. She actually is in the process of getting a legal name change, partially because she doesn't want her father to find her. Jenna told me that she's seeing a therapist about her father, and has been diagnosed with Post-Traumatic Stress Disorder. It didn't surprise me in the slightest. What was also interesting is that Jenna had tried to find me a couple years ago on Facebook, but at the time I had my Facebook set so that nobody could look me up!

Reestablishing contact with Jenna brought back a few painful memories that involved my mother. This morning when my parents called me I mentioned that I had tracked down Jenna. Surprisingly, neither of them remembered who she was. I tried to remind them-- I'd met her through Melanie. That she was into bands like Pearl Jam. That she had wanted to play the guitar. Oh, and she had been interested in Wicca. And that's where the painful memory surfaced.

In the fall of 1998, after I'd known her for a year, Jenna was dabbling with Wicca. I had made the mistake of mentioning this to my mother, and while she was cooking breakfast. Mom slammed down the pan she was holding and said, "Well, then you'd better stay away from her!" Shocked and confused, I asked why. "Wicca is witchcraft!" Yes? And? Does anybody really believe in witches? I tried to deescalate the situation by joking, "Yeah, Jenna's going to cast a spell on me" and "Jenna's going to sell my soul to Satan." But that didn't work. Mom and I got into a huge fight. I remember trying harder than usual to stay calm but Mom kept cutting me off and telling me that I was wrong. Dad came in and diffused the situation. I think he was a little concerned, but I don't think he thought it was a huge deal like Mom did (and ultimately they didn't make me stay away from Jenna). Mom had also commented, "I hate to tell you, but Jenna lives on the fringe." And that really hurt. It really hurt because Mom had kept nagging me to find friends outside of camp, and when I did, she didn't approve of the one I had found, the one who really understood me. And I didn't think and still don't think Jenna lived "on the fringe". And actually, Dad had liked her. That meant a lot to me because Dad invariably saw right through the "friends" who ended up hurting and betraying me, long before they hurt and betrayed me. I recall that he had even commented that Melanie was a fair-weather friend (and it turns out he was right) but that Jenna was "genuine". I think Mom liked Jenna too, but for some reason she was wary of her from day one, and she often commented on it, not just during the Wicca episode. I also recall telling my parents about Jenna's father being a jerk and Mom kept thinking that Jenna's father was just trying to guide his daughter, quash teenage rebellion or something. She seemed skeptical when I told her about the kind of person her father was, including his alcoholism and his drug-addled girlfriend. It also hurt because when I had friends who didn't understand me and did hurt me, Mom often urged me to give them another chance.

I brought this up on the phone this morning. As I said, to my frustration, my parents don't remember Jenna, and Mom certainly doesn't remember the comments she made about her. But I mentioned the comments and Mom said, "You have to put yourself in my situation. You always seemed to be drawn to the bizarre and I was wary of everything." The word "bizarre" struck a chord with me, I guess because it sounds so loaded, so judgmental, so negative. Well, yeah, isn't it obvious that someone who's a little unusual would have more in common with someone else who's a little unusual? And Jenna was anything but bizarre. She had her head on straight, and she was very down to Earth. Dad said to me, "This was a long time ago. Why do you keep dredging these things up from so long ago and saying 'You did this to me' and 'You did that to me'?"

Why? Why do I bring these things up? Why indeed! Why is it that this past Christmas I brought up with my mother Melanie's little stunt where she cut me off and didn't invite me to the wedding and Sergio's little stunt where he ignored the package I sent him after telling me he looked forward to getting it? After all, both of these things happened in 2008, seven years ago. Why is it that I recently wrote a blog post about obsessive crushes that I had had almost two decades ago? And why did it take me about sixteen years to move past the way Mom continually screamed at me, at age 11, about the kinds of bizarre Addams Family cartoons I was drawing? And why did I bring up the way Mom talked about Jenna when I was a teenager?

Because I felt like I never got closure for these things. That's a large part of why I blog. It's the best way I can articulate and make people understand what it's like to be me. It's hard to get that across in a conversation. You have to write it out. You have to tell people and force them to read it. Mom didn't understand the obsessive crushes I went through because I didn't talk to her about them. "So much was kept from me", she said, after reading my latest blog post on the subject. I had kept these things from her because I knew they would freak her out. On the occasion when I did try to tell her, she just shut me down. It was a no-win situation. Now, here we are, almost two decades after this issue started, discussing the situation. It's long overdue. This is how I get closure. And I have to get closure. No matter how much time has passed since something emotionally painful has happened, I need to get closure in order to move past it. And I don't think this is nearly as uncommon as one would think-- sometimes people are in therapy trying to get closure on things that happened to them several decades ago. For me that closure involves confronting my parents with the way they inadvertently hurt me while thinking they were helping me. It involves informing them they were wrong about certain situations when I knew exactly what I was looking at. But sometimes I feel I can't even confront them about it as they just cut me off, saying, "We didn't know" or "We were trying to help" or "Kids don't come with instruction manuals." But the thing is, I really do need to talk about it. I wish they'd understand that.

And the other thing is that despite knowing logically that I was right about many of these things where my parents were wrong, I still find myself doubting my own perception, and a lot of it has to do with the intensity of the way Mom reacted to me over the years. When Dad was concerned about me, it was usually a discussion that ensued. With Mom, it was almost always a fight, with the implication being that I had no idea what I was talking about and she did because she was Older and Therefore Wiser and that I should just listen to her unquestioningly. Because of the intensity of the way Mom had reacted to me in the past, I found myself wondering what her reaction to my finding Jenna was going to be. And I found myself wondering if Mom had been right about Jenna while I had been wrong. Why, I wondered, did I still have the same perception of Jenna that I did seventeen-and-a-half years ago when we first met? Is this immaturity on my part? Naivety? My Asperger's blocking the correct view of reality?

Same deal with the other situations: I still feel the same way about how I handled my crush on Omri as I did seventeen years ago, that I handled it well until towards the end of the summer. I still don't think there was anything wrong with my sending a package to Sergio seven years ago. And I still think there was nothing wrong with me, twenty-three years ago, at age 11, drawing bizarre Addams Family cartoons as long as I didn't draw them in school (which I didn't). It's the idea that my perception on these issues hasn't changed much. Does that mean that I was right? Or does that mean I'm just some immature little twerp with Asperger's who "doesn't get it"? This is why I bring these things up. I admit that I do sound a bit confrontational and aggressive when I address these issues, and also sometimes like I'm making a joke out of it, but that's partially because finally being able to do so is awkward and new for me. It's awkward and new for me to finally be able to talk about these weighty issues with my parents after avoiding these subjects for decades, feeling that they were taboo on so many levels. It's been a few years since my parents really started "to get it" but a few years versus a few decades? Yes, it's still new. So yes, Dad, this is why I "keep dredging this stuff up". It's not fun for me, but I need some closure, and dredging these things up is how I'll get closure.

As for Jenna, I will say this: She and Melanie both came from controlling backgrounds, albeit controlling in different ways. The difference is that Jenna got out and Melanie didn't. What that tells me is that Jenna has a firmer sense of self than Melanie. And a neurotypical person having such a strong sense of self is a rare commodity these days. She should be commended for it.

Jenna is calling me in about an hour so we can finally talk on the phone for the first time in years. I still remember that long, intense conversation we had seventeen years ago until 3:00 AM. I have a feeling we're going to have a conversation of similar length and intensity. That's what good friends do.