One quirk of mine is that I sometimes latch on to memorable lines in movies or music and use them to illustrate frustrating aspects of my life (or life in general). For example, one time when I seriously regretted something, I cynically said, quoting Doc Brown in Back to the Future Part II: "The only way to repair the present is in the past." Another time in the late '90s (when I was in high school), I was waiting obsessively for a reply to an email about something that was really important to me from a friend living overseas. Quoting the song Endless Night from the Broadway version of The Lion King, I commented, "One word, just a word will do to end this nightmare." "They don't have meetings about rainbows," from The Sixth Sense, is a quote I've employed numerous times to illustrate why my deranged drawings and stories drew "concern" from adults while most kids' drawings did not.
Lately, a quote that has been floating around in my mind comes from You Don't Know Jack, the HBO biopic about Dr. Jack Kevorkian. Okay, I know I have mentioned him a lot on this blog, but I am an Aspie, am I not? Anyway, the quote comes from a scene in which Dr. Kevorkian wins in court after being tried (again) for murder. A reporter asks Kevorkian how it feels to be victorious. He replies, "Victorious? I never feel victorious. I just go ahead and do what I do. This isn't a victory to me; it [the right to die]'s just common sense!" Lately, I've found myself using a modified version of that quote, usually in the form of, "This isn't a brilliant insight; it's just common sense!" I find myself saying it after I point out to friends and family what I think ought to be common sense in understanding people with Asperger's Syndrome, or just people in general (quirky or not). And just in case people assume that I'm making this assertion with 20/20 hindsight, ALL of the following examples were based on situations I analyzed as a kid, in some cases as young as eleven:
- When I was eleven, I was diagnosed with scoliosis. I remember the doctor being cold and clinical and that this poor bedside manner made me cry. What I don't remember was that he said that I had a "deformity." Apparently that was "the end" for me. I don't remember it, but I'm sure it happened. My mother seemed to think that my reaction was a bit on the hypersensitive side. Well, let me say this. If you're an eleven-year-old kid who already feels like a freak and next you are told you have a deformity, how could you possibly let that roll off your back? When do you hear the word "deformity?" In medical shows about conjoined twins, or about people with extra fingers or missing limbs, what is colloquially known as a freak. A child who already feels like a freak getting upset about being told she has a deformity? How can that be surprising? This isn't a brilliant insight; it's just common sense!
- My mother and grandmother often reacted to my off-color jokes and even my drawings by telling me that such things weren't ladylike. After a while, I began confiding in my cousin (with whom I'm close) that I hated being a girl.By the time I was twelve, I analyzed this and saw very clearly how absurd it was that a child's genitals, which she does not ask for, apparently ought to determine her behavior instead of her brain. This isn't a brilliant insight; it's just common sense!
- My parents told me that I wouldn't be bullied as much and would have more friends if I only dressed and acted more feminine. I thought this was absurd, not just because such fakery would have made me uncomfortable but also because such friendships would have been phony. At age fifteen I saw this with great clarity. This isn't a brilliant insight; it's just common sense!
- I hugged the dog and told her that I loved her but I never behaved this way around other people. My mom thought it was odd and was concerned. My dad commented, "I don't see what's so hard to understand. The dog's soft, furry, and cute, and people aren't." This isn't a brilliant insight; it's just common sense!
- I ignored my shrink, Dr. Klein, at the synagogue because I was worried that if I said, "hello" to him, other kids would know I was in psychotherapy, which was taboo in the early '90s. Dr. Klein often expressed bewilderment at this behavior, as if it were so unusual (I have told my friends this story, and they said they probably would have done the same thing when they were kids). A kid feels like a freak, and the last thing she wants is for her peers to know she's seeing a shrink. This isn't a brilliant insight; it's just common sense!
- At age fifteen I saw the hypocrisy of my being sent to guidance for "help" after kids bullied me relentlessly. Kids who cannot stop themselves from bullying others are not sent to guidance. Why not? Bullying is a destructive behavior. Shouldn't the teachers be concerned? This isn't a brilliant insight; it's just common sense!
- I drew very deranged drawings in early adolescence (as alluded to in my "They don't have meetings about rainbows," remark). My dad was concerned; Mom was freaked out. Kids who draw rainbows won't draw the concern of their parents, but they also generally aren't nearly as creative as I was. I understood this to be the case by the time I was about thirteen. This isn't a brilliant insight; it's just common sense!
- My parents couldn't understand why I got so upset when they offered me "advice" after I came home from school. Well, think about it. I spent seven hours in school being criticized only to be criticized again when I got home. The fact that my parents' motives were different from those of my peers is irrelevant. At age fifteen I understood that this was why "advice" was upsetting to me. This isn't a brillant insight; it's just common sense!
- The "advice" my parents gave me was painful to hear because it often started with phrases like, "If you would just..." I stopped telling them about the bullying in school and did my best to pretend that everything was okay. They couldn't understand why I wouldn't come to them any longer. I think it's pretty obvious that I didn't need to hear yet another round of criticisms. This isn't a brilliant insight; it's just common sense!
- Everybody told me to "just ignore" the bullies, even when physical violence-- such as throwing clay-- was involved. Nobody would tell an adult to "just ignore" someone throwing things at her as she walked down the street each day. It would be called assault. I knew that ignoring wouldn't work because it would just make kids try that much harder to get a rise out of me. Only now is the conventional wisdom of "just ignore them" being overturned. Really? How could anybody think that this is an effective way to deal with bullies? This isn't a brilliant insight; it's just common sense!
Parents, caregivers, teachers, friends, etc. of Aspies... please use your common sense!
When I was a kid, I experienced far fewer social conflicts online than in real life. That's because real life involves the social nuances of body language and voice tone. Today, my social conflicts are almost exclusively online. Usually, it pans out like this: I meet somebody through Facebook or reunite with somebody I haven't seen since childhood. We chat online once in a while. Sometimes, that person will even say, "I really like talking to you." Next thing I know, the person has unfriended me or even blocked me. Usually, I just let it go, depending on who that person is and whether or not I had any real past with them, online or off, even if just for one summer at camp (I'm sentimental and nostalgic to a fault). Sometimes, however, I do ask for an explanation (if there is a way to contact that person) and I might even get one if I'm lucky.
The top reason people have unfriended/blocked me is because I'm an atheist. I don't even have to ask to find out that this is the reason. Once, I was chatting online with someone I met through a mutual acquaintance who died. She wished me a Happy Easter. I told her I was Jewish, a Jewish atheist, to be exact. She asked me what that meant. I told her that I don't believe in God but I still value the Jewish culture in which I grew up. BAM! I was blocked.
Other people have unfriended/blocked me because... gasp... I tagged them in photos. That's right, I tagged them in photos in which they are fifteen years old and not professional looking. When I contact them and ask them why, they say things like, "I'm not comfortable with being tagged." Well, gee, how about simply telling me that and NOT unfriending me?
Probably the must hurtful of these situations happened about four years ago when I reunited with an old friend from camp online. We hit it off immediately and I developed a crush on him. I didn't tell him, of course, but he figured it out. He stopped answering my emails. He blocked me. A few months later, he unblocked me and accepted my friend request... but would not talk to me. He eventually blocked me again. For a whole year I drove myself crazy trying to figure out what the hell was going on.
Just as hurtful (albeit for different reasons), my best friend from childhood, who I knew since 1992, stopped talking to me in 2008. I packed up and moved to NYC from my hometown in Pennsylvania in 1999, but we still saw each other about once a year. I knew she was going to get married in '08, and she definitely made it clear that I was going to be there. This was in 2007, the last time we spoke. 2008 came and went without an invitation. She rejected my friend request on MySpace. She no longer returned calls or answered emails. To this day I have no idea what happened. I even sent her an email asking her nicely why she did not invite me to the wedding or even talk to me anymore. I made it clear that I was hurt. No response. I still don't know what her rationale was for shutting me out, but I do know that it is not my fault.
When these things happen, and inevitably hurt, I always hear, "Let it go." Sure. "Let it go." So I guess I should just say to myself, "Oh, fiddlesticks. I breathed in the wrong direction and some ultra sensitive person is shutting me out without explanation. I'll just let it go and make sure not to breathe in the wrong direction next time."
I would suspect that this online drama is not unique to those with Asperger's Syndrome, but perhaps it bothers us more because we do not take friendship for granted. Perhaps, too, many are sentimental to a fault, as I am. In any case, I want to tell anybody who's reading this to be more sensitive to the person on the other side during this online nonsense. "Ignoring," is not communication, and "blocking," is little different than saying, "F--- you." Both say, "You are nothing to me." In online communication, you rarely know what happens at the other end, so this is not a case of missing body language or other cues. This is simply being kept in the dark.
I am sure I speak for a lot of people-- with and without Asperger's Syndrome-- when I say that it is frustrating and irritating.
It's like an online meme that I saw the other day: "I'm sorry that I did something that made YOU feel that I have to apologize."
When I was growing up with undiagnosed Asperger's Syndrome, I felt like a freak. I knew I was different and I did not have an answer as to why. What I did know was that a lot of kids were mean to me, and a lot of adults-- including my own parents-- did not understand me.
Sometimes, in tears, I lamented about being a "freak" and having problems that seemed to have no solution. Sometimes my parents tried to help me put things in perspective, but in a very superficial and unhelpful way. For example, once we were eating at Chi-Chi's (a Mexican restaurant) and someone with no legs and hooks for where his arms should be was sitting in a wheelchair about ten feet away from us. My dad whispered to me, "Now there's someone with REAL problems." Another time, my mother (who is a high school teacher) said, "You think you have it bad? One of my students is pregnant." It wasn't just my parents who did this. Once, my best friend said, "Your problems are not that bad. At least you're not dying of AIDS or something!"
I bet if I told these stories to an auditorium of Aspies and asked how many of them have stories like this, every single one would raise their hands. I also am willing to bet that all of them would feel the same frustration I did. I was about twelve when my dad pointed out the limbless person in Chi-Chi's, and I remember that his comment didn't make me feel any better. Same thing when I was 15 and my mother told me about her pregnant student. Same, too, when I was also about 15 and my friend told me that at least I wasn't dying of some deadly disease. None of these comments made me feel better because I always knew that what I was going through was unheard of. Getting pregnant, dying from AIDS-related complications, and even having no limbs were problems that at least had names and explanations. In fact, I recall telling my friend that I would rather be dying of AIDS-related complications and have friends than be physically healthy and shunned by an entire society (which is what I felt like was happening). And this was not just something I said on a whim. I meant it.
In any case, just because someone complains about problems that are not as (superficially) serious as a deadly disease or the loss of limbs or teenage pregnancy does not mean that the problems are not just as real. With that logic, one could tell the person with HIV that at least he has all of his limbs, and at least he lives in a country where HIV can be managed for decades with medication and is not an immanent death sentence like it used to be. One could also, then, say that unless the person has problems that are not the absolute worst in the world (whatever that is) then he or she should not complain. By then, one has alienated the vast majority of the world, whose problems are suddenly not real.
Please, do not tell your kids or friends with Asperger's Syndrome, "At least you're not dying of some deadly disease" or something similar. It trivializes the very real anguish they are experiencing. Just because AS cannot be confirmed visually like the lack of limbs, a deadly disease, or teenage pregnancy, does not mean the problem does not exist. Furthermore, trivializing your kids'/friends' issues may make them feel like their problems are all in their minds and that they're crazy for feeling anguish. The last thing someone with AS needs is to feel even crazier than they already feel.
Whoa! It's been four months since my last post. Sorry about that!
Everybody has regrets. I have regrets, too, most of them involving me not standing up for myself because I had reluctantly accepted that I was in the wrong concerning whatever social disaster I found myself in. However, that is not to say that there weren't times in my childhood/early adulthood when I DID stand up for myself and stick to my principles. In fact, I have a perfect example of when I stuck by my principles, to the befuddlement of a particular family member:
Like many girls with Asperger's Syndrome, I was (and AM) a tomboy. This means much more than the stereotypical, "Oh, she plays with trucks and likes sports. She's a tomboy." I always felt like I had a male brain in some ways (this feeling, too, is a common phenomenon among girls with AS). It was only natural, then, that I strongly disliked feminine clothing. I did not ask for clothes in the boys' section, but I did pick out clothes that one would consider gender neutral. When I was in middle school, my parents told me over and over that the bullying I experienced would stop and I would make friends if only I dressed differently. While my parents didn't force me to wear what I call "boob-neckline" shirts, they did bring up my clothing taste whenever I got into a conflict with somebody, be it a simple disagreement or outright bullying.
No matter what my parents said (and it was painful and constantly resulted in my spending several hours on the phone with my feminist cousin), I stuck to my guns and wore what felt natural and comfortable on me. I refused to put on a costume. Today my parents realize they were wrong to try to force me into girly clothes, but I have talked to a particular family member who continues to be perplexed at my stubbornness (I call it strength!). As an example of a regret he feels about not taking his parents' advice, he talks about how his parents tried to get him to play a musical instrument. He didn't stick with musical lessons and his parents didn't try to make him. He regrets that they did not force him to. This is a classic case of apples and oranges. One involves trying to get their kid a hobby, and another is trying to get the kid to present themselves as something they're not, to lie to themselves and the world.
It is also important to realize that actions that are good for one kid are not good for another. Forcing me into music would have been not only a bad idea but also a pointless one as I developed several hobbies on my own without anybody's prodding. I was drawing and writing from a very early age, and in adolescence I grew interested in languages; I taught myself French I during the last three weeks of 9th grade so I could get into French II the following year. Forcing my relative to take music lessons might have been a good idea because he did not pursue hobbies as readily, let alone as intensely, as I.
Likewise, forcing someone, who feels she has a more masculine brain, to dress girly can be psychologically damaging. Why would that girl want to please the kids who bully her? That's answering to the bullies and affirming their behavior. Also, why would she even want people like that as friends? And no, this is not me as an adult critically dissecting it; I analyzed it intensely by the time I was fourteen or fifteen. Prior to that, probably by the time I was about ten, I saw the blatant hypocrisy in the way adults would tell kids, "Just be yourself," when there were clearly hundreds of pages of fine print attached to that philosophy. Now, if there is a girl with Asperger's Syndrome who is feminine inside and wants to learn to dress like the other girls, then steering her in that direction is a good idea.
So what did I tell my relative? No, I don't regret sticking by my principles. Why should I regret being true to myself and not blindly taking advice that hurt? I don't regret it, not in the slightest.
For the record, the bullying stopped when I finally had the guts to stand up to the bullies.
As I get ready to revise my book for parents of children with Asperger's Syndrome, I find that a lot of wounds have been reopened. A few parts of the book deal with the horrendous bullying that I endured, particularly in middle school. I relate stories about being humiliated in ways that boggle the imagination. In addition to being taunted, I had clay thrown at me in ninth grade ceramics class. I was also hit, kicked, shoved, and, in one case, even strangled. While other kids worried about who they were going with to the next dance, I worried about whether I could get through just one day without being abused, both emotionally and physically. A few times, I told my parents that I wished I was dead (which I didn't mean), and a few times I told them that I wished I hadn't been born (which I sometimes did mean).
The most painful parts of these memories deal not with the humiliation itself, but with my parents' responses to the humiliation. Like many girls with Asperger's Syndrome, I was (and still am) a tomboy. Between the ages of 13 and 17 I wore my hair back almost constantly; between the ages of 13 and 15 it was literally constantly. I wore T-shirts/sweatshirts and jeans to school. I liked the way the clothes hung off of my then-scrawny frame; I liked looking like a tomboy-- it was who I was. When forced to dress up in skirts and blouses for the holidays I felt very uncomfortable, but at least those episodes were over in just a few hours. My parents responded to the bullying by telling me that I needed to learn to look-- and act-- more feminine. What they did not know was that this was not an option for me any more than was writing with my left hand. The idea of taking my mother's advice and wearing skirts, form-fitting jeans and low-cut shirts-- or "boob neckline" shirts, as I jokingly call them-- was terrifying to me. When I say that I was a tomboy, I don't mean that I was a girl who liked to play with boys' toys (my toys were more gender-neutral, if anything) or that I was a girl who liked to play sports (I stunk at them). I mean that when I declared myself a tomboy I made a very emphatic and firm statement about my gender identity. To add insult to injury, there was another tomboy at school who dressed similarly to me and never got bullied. When I tried to cite this as evidence that my clothes weren't causing the bullying, my parents just brushed it off.
I was left confused and shaky by my parents' advice-- which they did not just dispense once but literally every time I was bullied or shunned in some way. I felt like my summers at left-leaning Camp Negev-- where I had friends and there was a lot of talk about gender identity-- were my only salvation. (Today I compare it to Harry Potter going to Hogwarts.) First of all, it is profoundly naive to think that the bullying would have suddenly ended had I started dressing in skirts, form-fitting jeans and "boob-neckline" shirts, especially since the way I dressed was the one thing that was rarely criticized in school. Secondly, why the hell would I have wanted to be friends with people whose friendships were contingent on the way I dressed? Third, and most importantly, the message that I was getting was that I was bringing these problems on myself-- that I was the problem, not the bullies. I wanted to be accepted for who I was, and I constantly got the message that this expectation was unrealistic.
My parents, who have since realized the huge mistake they made by giving me this advice, had no idea how tormented I was by their criticisms about my taste in clothes. To this day I still have dreams about fighting with them about it which cumulate in my waking up screaming. However, one of the people who is reading my manuscript (a relative of mine), who generally makes criticisms on my book that I agree with, made comments that basically implied that I should have taken my parents' advice, even wondering why I wouldn't change my style of dress to stop the bullying. Yes, he still believes, as my parents did, that this was the reason I was bullied.
No matter what reason your child is bullied, you cannot tell her-- or imply-- that she is bringing the bullying on herself and that she needs to change, even if you think doing so will improve her own safety (if she wants to change, that's a different story). Schools are funded by your tax dollars which are not just paying for your child's education. They are paying for the staff to create a safe environment for your child. And you may have to go up to the school and complain to the teachers (which my parents did, despite their criticisms). If it falls on deaf ears, then you must go to the principal. If that doesn't work, then go to the superintendent. Keep pushing until something gives. At any rate, if the staff cannot create a safe environment for your child, then they have shirked their duties and have quietly sent the bullies the message that what they are doing is okay; trust me, bullies can tell when a teacher thinks another student is weird. If your child's safety is contingent upon her making some change in her personality and appearance that causes her great discomfort, then that is not justice! It is not!
Today I am happy and well-adjusted, but had I gotten the message from my parents that I was okay, then their support would have made handling the bullying that much easier. Had the school actually made a concerted effort to create a safe environment for me, then I would have never found myself wishing I hadn't been born.
No kid should have to think like that.
When I was turning ten a family friend, who had moved to Colorado, came to Pennsylvania to visit us. The friend offered to buy me something for my birthday, and what I wanted the most was Super Mario Brothers 3 for Nintendo. When we got to the store and found the game, the friend insisted that she was going to pay for the game herself. My mother told her, no, that she would not allow her to buy it for me unless she, too, contributed something. This silly argument went on for a couple minutes. I began to notice yet another absurdity in adult interaction.
At this past year's Christmas party, my mother insisted on giving the guests food to take home. The guests kept saying things like, "I don't want it," and "You don't have to," but my mother kept insisting they take it. Eventually, the guests took the food. While this exchange was not nearly as protracted as the "Super Mario Brothers 3" one, it still reeked of ritual: social ritual.
Now, to be fair, my mother probably did not want the food because she is trying to watch her weight. But what about the episode involving Super Mario Brothers 3? Throughout my childhood, I watched my my mother participate in lengthy exchanges involving phrases such as "You don't have to," "I can't let you do that," and so forth. Despite having Asperger's Syndrome, even as a kid I knew that this was some kind of social ritual to make oneself look selfless. I thought it was ridiculous then, and I think it's ridiculous now.
Today I wonder if this is another example of reciprocal altruism. I'm not going to pretend to be an expert in evolutionary psychology, but to me the protracted, "You don't have to" and "I can't let you do that" exchanges reek of reciprocal altruism. This is an evolutionary strategy observed in social species: If one being does something else for another member of his species-- usually a genetic relative or (in the case of humans) a close friend-- then that other being will eventually reciprocate. If someone tells their friend, "You don't have to do that," I suspect it translates into, "I am showing you how selfless I am so that when I desperately need help, you will offer it." The more protracted version of this exchange, perhaps, translates into, "I'm less selfish than you."/"No, I'm less selfish than you."
Whatever the case, I think it's a silly ritual and an example of how absurd certain social rituals are. Additionally, from what I've observed, women do it more than men. Why? Possibly because women evolved to be more social beings in order to form close-knit groups to protect their offspring from predators. Either way, it's a ritual I don't participate in. If I had a child and my friend offered to buy her a video game, I might say, "Are you sure you can afford that?" ONCE and then when the person said, "Yes," I would accept their offer and thank them. This is just about to the extent I've seen men do it, incidentally.
By the way, on a recent episode of The Simpsons, Bart and Lisa asked Marge why they were flying clear across the country to a wedding. Marge explained, "Cousin Cathy invited us so our feelings wouldn't be hurt, and we're going so her feelings won't be hurt." Homer even said, "I just don't understand the world of grownups."
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In the end, it comes back to what I said in "I'm Honest and Your Baby Is Ugly": There is no such thing as true altruism.
