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!
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.
I was close to tears last year when I read a section of a book for parents of kids with Asperger's syndrome. This section advised parents to make sure their kids "blend in," reminding them that kids with AS are not affected by peer pressure. It went so far as to tell parents that a sixth grader won't stop watching Winnie the Pooh just because of his age, nor will he realize that kids don't bring umbrellas to school on a rainy day.
Before you start typing a response that begins with, "Well there is another side to this," I just want you to reread the above paragraph, replacing all instances of "Asperger's syndrome" and "AS" with "Down syndrome." Speechless, aren't you? I am sure you can imagine the uproar that would ensue if there were books that advised parents of kids with Down syndrome to "fit in" socially or academically. And why should kids with intellectual disabilities be exempt from this expectation? Because their IQs are below a certain level? Okay, if that's the case, then perhaps there should be an MQ-- maturity quotient test-- for kids with AS to take to excuse them. Oh, but wait. Kids with Down syndrome also have physical features that alert people of their disability, and kids with AS don't. Fine. Give kids with AS a T-shirt to wear that alerts others that they think differently and have different tastes.
No matter how you cut it, this pressure to make anybody-- whether or not they have a disability or anomaly-- is immoral. From my personal experience-- and from what other Aspies have told me-- all they ever wanted in life was to be accepted for who they were. By advising them to conform to what amounts to herd mentality, the authors of this book (and many others that give similar advice, especially to girls, by the way) are basically throwing up their hands and saying, "Okay, nobody is going to accept you for who you are, so you need to change who you are." Although my parents did not intend it, that was the message I got from them, loud and clear, when I was growing up with undiagnosed AS and pressured to "fit in." This further shattered my self-esteem, which was already severely damaged from bullying at school. I felt that I was being told to answer to the bullies. Besides, if a kid is told how important it is to fit in in silly ways-- like what movies to watch, what clothes to wear, and not to carry umbrellas-- why should this same person say no to cigarettes and drugs?
What we as a society need to do is raise consciousness and educate the world about Asperger's syndrome. If we don't, our schools will be run by bullies and so will the rest of society. Change starts with you, and it starts now.
