Masking (the autistic kind, not the COVID-19 kind)

As always, names and places changed...

In a journal entry dated January 31, 1996, I wrote, "Everything about me is wrong. I want to try to change it by June."

At the end of the previous summer, I wouldn't have dreamed of writing something like that in my journal. I had spent almost two months at Camp Negev, where I felt accepted and appreciated for the first time. Entering 9th grade (the final year in middle school in my district) in the fall with my newfound self-esteem-- despite having endured several years of bullying-- I felt incredibly optimistic. 

That optimism, however, didn't last. Having been regularly teased since 2nd grade, the childish teasing escalated to bullying by 5th grade and to severe bullying by 8th grade. In 9th grade, it had reached a crescendo. I didn't feel emotionally or physically safe coming to school. Every day in ceramics class, kids threw balls of clay at me while the teacher told me to "just ignore" the physical assault I endured. In other classes where I was regularly forced into group projects (times have changed, but back then teachers seemed to think there was something wrong with you if you preferred to work alone), my ideas were shouted down or ridiculed simply because I was the one who thought of them; sometimes, a more "popular" student would propose the exact same idea that I had suggested just minutes ago, and the other kids would embrace it. Often, these group projects ended up turning into episodes of taunting, rife with bitingly personal comments: one of many instances of emotional abuse at the hands of the other kids.  

It was turning into the worst school year of my life.

One Saturday or Sunday that year, I spent the morning crying in my room. I didn't want my parents to hear me because I felt that they blamed me whenever I was bullied at school, saying things like, "You joke around too much," or "You don't know how to interact with people" or "you bring it on yourself." I can't remember if my parents heard me crying and then forced it out of me, or if the amount of time I was in my room made them suspicious, or if I purposely cried more audibly because I was so tortured that actually wanted them to hear me because I needed to talk to someone. Whatever the case, I eventually ended up telling them about an incident that had happened on Friday. If I remember correctly, it was some taunting that had occurred during a group activity in science class.

"Why do kids do this to me?" I finally wailed.

Mom, aggressively pointing a scolding finger at me, shouted, "Because you don't even try to fit in. Believe it or not, appearance does matter. Look at you! You look like a 6th grader! Let me tell you something: you're not going to high school next year dressed like this!"

How was I dressed? I was wearing a pair of tan jeans and a green Bugs Bunny sweatshirt. Mom then pointed out a bleach stain on one of the pant legs that I had failed to notice. She yelled, "How could wear pants that have a stain on them?" When I told her that I hadn't noticed the stain, she said, "This is what girls your age notice!" I didn't know what to tell her about that. But her comment made me feel like there was something wrong with me.

Then, my dad started in on me about my hair, the fact that I hadn't worn it down for the past year unless forced to. Although not transgender, I felt somewhat dysphoric about my thick, wavy, Ashkenazi Jewish hair sending the message "pretty bombshell model" to other people, because that wasn't me. I was a tomboy, androgynous as hell, and that's how I was comfortable presenting. But my parents made it clear, not just that day, but several times, that my androgyny was immature and unacceptable and that they-- and society-- wanted the "pretty bombshell model".

After a protracted fight, I retreated to my room again to cry, feeling even worse after talking to my parents. Clearly, my initial instincts to try to hide the incident from them were founded. I didn't feel supported in personality or how I dressed. The interaction with them left me humiliated and feeling like a worthless excuse for a human being. I thought about my previous summer at Camp Negev, how I had been accepted for the first time. However, I had arrived under extreme pressure: I told myself that this was my last blank slate until college, that I had to fundamentally change things about my personality if I wanted to be accepted and have friends. 

Between the criticisms about my behavior and my clothing, my parents were demanding that I do something that is now referred to in the autism world as "masking", and it was what I had told myself I would have to do if I wanted to make friends at Camp Negev. It's a phenomenon that a lot of autistic adults-- especially autistic cis women-- have referenced in discussions about growing up with undiagnosed autism. What is masking? Well, it's exactly what it sounds like: inhibiting your natural inclinations in favor of ones that are more socially acceptable. The author of this article summed it up like this: "fitting in, in order to avoid being coddled, babied, ostracized, hated on, harassed, or bullied for being different."

Holy crap, does that hit home. 

I occasionally tried to mask, but it backfired spectacularly. If I stopped myself from telling an inappropriate joke or talking about some movie that only I was interested in, all it did was delay the inevitable and I would do both. That's not to say there isn't a time and place to talk about movies or tell inappropriate jokes, but I had been trained to think that any time I did these things I had committed some horrible, unforgivable moral failure, that I had violated the other person in egregious ways and that any anger or emotional abuse that they responded with was justified. 

I often commented that I had to think about everything before I said it. People who I told this to said that everybody has to do that. No. That's not fucking true. There's a difference between occasionally having to stop oneself from saying something that might not go over well and having to think about every goddamned thing before saying it. It caused severe anxiety in me that I am still feeling the aftermath of today. It was frustrating and painful trying to find a balance between being myself and being what I had to be in order to be accepted. Since I very rarely tried to mask, friends at camp often commented that I was one of the strongest people they knew. At home, my parents dismissed my strong sense of self as rigidness, stubbornness, and being set in my ways.

I am almost finished a book by Sarah Kurchak called I Overcame My Autism and All I Got Was this Lousy Anxiety Disorder. Kurchak succeeded in masking when she was young and, like many women who used masking as a strategy in their youth, suffers severe anxiety and trauma. Had my mother known this woman as a kid in the '90s, she probably would have seen the adjustments she made and said, "See? She knows how to take advice." Only fairly recently have she and Dad finally seen this sort of thing for what it is-- masking, which is ultimately detrimental to the mental health of autistic people.

In her book, Kurchak said something very relatable about the mindset that masking (or, in my case, attempting to mask and failing at it) leads us to:

[The aftermath of a mistake] follows the same pattern: I make a mistake. I react poorly to it. Before I can take the time to properly process what has happened, what it might mean and what I should do, my mind is already racing with worst-case scenarios. Then it gets stuck in a repetitive loop. Even if I do manage to recognize that my thought process is starting to spiral, there's nothing I can do to stop it at this point. It's like a broken record skipping over and over and over and over the same self-loathing sound bite.

It made me think about how in the summer of 1995 I had told myself that going to Camp Negev was my "last blank slate until college", as if who I was, was so wrong that I had to fundamentally change myself in order to deserve friends. I was fourteen years old, and back then it didn't even dawn on me how horrible it was for a young kid to have to think like that. But that was my reality back then, what society had taught me. Adults didn't even bat an eye about it. I even remember asking my shrink, who I have since dubbed Dr. Bonehead, "What if I mess up and I'm not able to make any friends?" He said, "Well, I guess it will be a disappointing summer." In response, I quipped sarcastically, "Boy, you're insightful."

The other day, I was telling Chuck, a counselor from my 1997 Israel trip (affiliated with Camp Negev) who I recently reconnected with and befriended, about how I had "spent the year in sober reflection" after that summer. Why had I been in sober reflection, let alone for an entire year? Because that summer, when I was sixteen, I had had a huge crush on Chuck and constantly followed him around like I was Pepe LePew. In addition, I had been dealing with unbelievable anxiety due to some issues with my parents that had escalated right before I left. On top of that, the fact that there were about 90 kids my age on the trip (as opposed to 20 kids my age or fewer at camp) was overwhelming, and I was also frustrated about the sudden overemphasis on hookup culture and substance use. I was having frequent meltdowns, which back then society dismissed as childish temper tantrums.

Between the stress from my parents, the crush, and the culture on the trip that contrasted sharply with camp, my anxiety was in the stratosphere. I was a loose cannon, my mood spun on a dime, and I even got into a physical fight with someone. These were all mistakes-- stupid mistakes-- to be sure, but why did I have to spend an entire goddamned YEAR feeling guilty about my behavior? Why did I eventually entertain the notion of finding all the email addresses for my counselors and contacting them, apologizing for being so difficult and letting them know that I was trying to change? Kids on that trip did a lot of stupid things because, well, they were teenagers. It's just that my behaviors were a different kind of stupid, but not necessarily worse. Hey, you know what? I wasn't malicious, and it wasn't like I was setting things on fire. And boys get into physical fights all the time; people see that as "normal". 

Wouldn't this have been a better way for me to contextualize the mistakes I had made that summer?:

But the reality was, throughout my teenage years and into my twenties I was expected to be in sober reflection about my behavior constantly, especially when I failed to mask, which was most of the time. Bottom line, people cannot live that way. And the fact that it's mostly cisgender women who try to mask their autism tells me something very damning about our culture (there may also be a biological component to this, but obviously it's not easy to tease out) and the way women are expect to be constantly nurturing, anticipating what other people need and practically having an orgasm while doing it. 

Remember those rubber masks you would put on every Halloween and how uncomfortable they were? This is that.

The difference, of course, was that you knew you were expected to take the masks off.

Empathy

Another thing I'm curious about. Aspies are supposed to lack empathy? You seem to me unusually empathetic.

These were the words in a mildly-amusing-as-well-as-flattering private message from someone I am friendly with online. Yes, the pervasive myth that people with Asperger's Syndrome lack empathy is still making rounds. It reminds me of some kind of abstract Hydra: That is, instead of cutting off one head just to watch two grow in its place, I clear up the "Aspies don't have empathy myth" for one person just to to have to clear it up for two more people. It is a myth that has gone viral and just seems impossible to stop.

Do Aspies lack empathy? The problem is that the term "empathy" has two very different meanings. Here's dictionary.com's definition:

the psychological identification with or vicarious experiencing of the feelings, thoughts, or attitudes of another.

In other words, the definition can be interpreted in two ways: 1) Cognitively understanding that someone else is suffering (or joyful); whether or not the person cares about these feelings is a different question entirely. 2) The visceral reaction someone gets when seeing someone else suffering (or being joyful); that is, he's suffering (or joyful), so I'm suffering (or joyful) too, or  Unfortunately, when most people use the term "empathy", they use it in the second definition I am referencing: they believe that the Aspie knows that the other person is upset or joyful but simply does not care.

Reasons Why Many People Believe Aspies Lack Empathy

1. Difficulties with cognitive empathy are mistaken for lack of sympathy 

Yes, it is true that people with Asperger's Syndrome sometimes have problems with cognitive empathy, which is one thing that gives rise to the myth that they lack sympathy, more specifically, for another person. Sometimes Aspies do not realize that somebody else is upset. Or perhaps they do understand that the other person is upset but cannot quite understand why (depending where on the spectrum they are!) and the upset person thinks that they are self-centered and don't care how other people feel. Often, once the Aspie realizes that the person is upset, he or she cares just as much as any neurotypical person would. Conversely, sociopaths have a lot of cognitive empathy-- and they exploit others' emotions for their own selfish whims.

To give a very concrete example of this phenomenon in my own life, I need look no further than my horrible years in middle school. More times than I can count, I would approach a crying friend (and I use the term loosely, because they were fair-weather friends!) and ask her what was wrong. Her other friends would glare at me and ask, "Where have you been all week?" Because I missed subtle cues that something had been bothering a friend all week and did not realize it until she was doing something obvious-- crying-- the other girls thought that I didn't care, that I was only concerned about myself. Middle school is often the worst for girls with Asperger's because girls at that age tend to form relationships based on emotional intimacy, secrets, etc., rather than a shared interest, such as a favorite movie. The social dynamics become more intense and demanding. Boys that age are more likely to form friendships around shared interests-- it is for that reason (and more) that I wish I had tried to befriend boys at around that age. I had much more in common with them in terms of interests and styles of social interaction. Today I find that I generally get along better with men than with women (unless it's in a setting with like-minded individuals; then gender makes no difference).


2. We find it exhausting to be social butterflies

My very neurotypical mother is a high school teacher. She learns all of her students' names very quickly. She gets to know each kid individually and knows all their likes and dislikes. Years later, if she runs into one of her students again, she usually remembers him or her. I could not do what she does. Ever.

In my years working at summer camps, I bonded with a few kids over common interests. For example, if a camper wanted to learn to draw, we would bond over that because it was something concrete I could teach them. Or they could at least show me their drawings and I would be interested in seeing them. But I have difficulty pretending to be interested in a little girl's love of princesses, for example. I was not one of those counselors who knew everything about each camper, and it always took me forever to learn everyone's name. I'm also terrible with faces, which didn't help matters.

Fortunately, many of these kids usually liked me because they thought I was fun and funny. In a video I shot during my CIT year at Camp Negev, some 11-year-old kids are jumping up and down and shouting, "We love you, Julie!" But I don't remember the names of most of the kids that I've worked with. My style in terms of working with kids involves a very narrow, usually impersonal focus. Kids who wanted to bond with their counselors on a more personal level usually went to their other counselors. Unless, of course, the kid has psychological/neurological issues. Then they came to me. Kids with such issues usually liked me, probably because I understood them better and could give them better advice.


3. We react differently than neurotypicals to another's joy or distress 

If somebody I barely know at work, for example, tells me that their mother is in the hospital, I do not gush with emotion. I think it's unfortunate, but I am not overwhelmed with emotion at this news. I say, "Oh, jeez. I hope she gets better," and I forget about it ten seconds later. The expected reaction-- from both sexes, but I think women especially-- is to react viscerally, or at least pretend to. That is, people are expected to at least seem extremely upset even if they don't know this person. And sorry, I think a lot of the time it is just an act if the person doesn't know the other person well. It is a social ritual to stay in others' good graces. Same with the social ritual where everybody tells a new mother that her baby is "perfect". Sure, some people mean it, but I think a good portion of them are lying, just saying what is expected of them. What do I say? I say what I mean. I tell the new mother that she's going to be a great parent.

The thing is, I sometimes question my own capacity for empathy. When something bad happens to a friend, I try to console him or her. But I do not get emotionally involved with the friend's issues. I just try my best to help. Am I in the minority? Do most people get emotionally involved? Do they get a visceral reaction, feeling the ache of the friend's breakup (for example) as if it were happening to them? I don't. And also, do I try to anticipate the possibility of hurting another's feelings or annoying them in some way because I genuinely care about their feelings, or am I just trying to avoid trouble for myself? Or both? I really don't know. And why do most people try to avoid hurting or annoying others? Does avoiding trouble for themselves factor in as well? I really don't know either.

I am more likely to get visceral reactions when I see a suffering animal than when I see a suffering person. I once broke off two pieces of bagel to give to two pigeons. One larger, dominant pigeon ate his share and stole the other pigeon's piece. When the smaller pigeon tried to eat his own share, the larger pigeon bit him. This made me really upset. I wanted to kick that bullying pigeon away from the little pigeon. I tried to feed the small pigeon again, but the same thing happened. I tried scaring the larger pigeon away by stamping my feet. It didn't work. I threw a piece of bread a few feet away so the larger pigeon would have to chase it. Unfortunately, the smaller pigeon gave chase as well, so I was unable to feed the smaller pigeon separately. It made me so angry that this little pigeon was barely able to take a bite while this alpha male (or female? I don't know what sex it was) got his way because he was bigger and stronger.

As for suffering people, I rarely get visceral reactions where they're concerned-- unless it involves children, particularly children who are victims of bullying. And I suppose the pigeon incident ties in nicely to my visceral reactions for the children who are victims of bullying.


4. We find ourselves in very extreme circumstances that makes it look like we lack empathy

The obsessive crushes I've discussed in a few blog posts immediately come to mind. Most people are able to move on if they think their crush is avoiding them. I simply couldn't. But I knew that it was also wrong to be pushy towards these guys that I liked. It was this constant balancing act, a psychological war in my mind to try to figure out how to allow myself to interact with them without being too pushy. As for the times I waited for them outside of buildings at summer camp and on my Israel trip, that was the end result of the warfare in my mind. On my 1997 Israel trip I didn't say, "Hey, you know, I think I'll wait for Charlie outside a building. That's not weird at all. That sounds like a great idea." Of course I knew it was weird, but I was just experiencing intensely powerful emotions that I couldn't handle. As a friend from that trip put it: "You were so gone over Charlie that you didn't know what to do." But to the observer it looks like stalking and lack of respect on my part. Even the following summer back at camp, in 1998, it was not enough that I implemented strict, assiduous controls for myself to make sure I did not fall into those same behaviors again (also discussed in the above linked post). Why? Because in the last week  or two of camp I did fall into those behaviors. People commented that I seemed self-centered for hyperfocusing on these crushes, and they did not realize that it was not a conscious decision. It was that my brain was hijacked by neuroterrorists, as I call it, and I just didn't know what to do.

In other circumstances, such as trying to navigate middle school and having to watch my every move lest others start trash-talking me, people would ask me, "Why are you so focused on yourself? Why don't you ask other people how they're doing?" Because when your emotional survival depends on not becoming a target for bullying, the last thing on your mind is how other people are doing.


5. We don't always relate to what upsets others or makes them happy

I get a strong, visceral reaction from seeing victims of bullying suffer, from seeing children with psychological/neurological issues suffer, and from seeing animals suffer. I do not get a visceral reaction from hearing that my friend is having problems with her boyfriend. I've never been in a relationship and cannot relate directly to this. When I try to help, I tap into my issue of obsessive crushes to try find something relatable, but that is the best that I can do. I really cannot deal with a friend's relationship drama, and I don't want to (though I want them to feel better, of course), and they probably shouldn't come to me anyway because I have no good advice for them. But I suppose I am flattered that they do come to me.

In terms of joy, I really cannot relate to the joy a parent feels when having a baby. I can't even imagine feeling joyful about having a baby. And if I had any doubts about my declaration about not wanting kids, they were torpedoed when I began having recurring dreams about being pregnant and feeling horrified (in a couple dreams, I had the baby and thought, "What am I supposed to do with this?") The only time I really cared when someone I knew had a baby was when my cousin gave birth. But it wasn't this whole motherhood-is-an-amazing-and-rewarding-and-beautiful thing or a babies-are-so-precious thing. It was more of, "Oh, cool.  This person I grew up with is having a kid. It will be fun to watch him grow up."

The Irony

Now wait a second. Isn't it only natural that people tend to empathize with and therefore sympathize what they can relate to? Most people can relate to relationship drama and babies, and so most people are going to have the expected reactions. On the the other hand, most people can't relate to a lot of what I have been through. The girls in my middle school could not relate to my inability to see that another girl was upset, and so they could not empathize with how my confusion tormented me. Most people cannot relate to needing space from games of social football, so to speak. They cannot see why such a thing would be exhausting. No sympathy there, either. Most people cannot relate to being bullied at school. They think that to be bullied as bad as I was that you have to bring it upon yourself. No sympathy. Obsessive crushes? Same deal. Not thinking about others' needs because one's own emotional survival is in jeopardy? Forget it.

In other words, many neurotypicals lack empathy and sympathy for people with Asperger's because they cannot relate to what we go through. But because their neurotype is in the majority, our not relating to them looks like lack of empathy and sympathy whereas their inability to relate to us simply means our circumstances are too weird to be relatable.

And one more thing...

I'm going to, once again, plug a book by my favorite non-fiction writer, Richard Dawkins. The Selfish Gene. It is a great book with a misleading title, and the gist of the book is that natural selection works on the level of the gene rather than the organism. The genes are selfish (in a metaphorical sense), and this selfishness of genes gives rise to altruism. After all, family members share copies of these genes, and being altruistic towards them increases their chances of being passed on to another generation.

I once had a conversation with my mother about how people go through social rituals that are often phony: telling someone their baby (which they really think is ugly) is "perfect", insisting on paying for a meal even though they know damned well that the other person is going to cover them anyway, offering a Christmas guest leftovers to take home even though the host knows the guest probably doesn't want them... I told my mother that I think these rituals are really to stay in the good grace of others who might be able to reciprocate someday when the stakes are higher. My mother, missing the point that I was trying to offer an evolutionary explanation for these rituals, said, "No, it just makes them feel good." Okay, fair enough. But what does "feeling good" mean? There is a reward system in the brain that perpetuates behaviors that benefit oneself. If I remember correctly, oxytocin in the brain is the reward. So while the person might "feel good" from helping someone else, ultimately the individual (or their genes, if you want to get technical) are benefiting.

We are all out for ourselves in the end, and no amount of sympathy and empathy-- no matter how genuine-- changes that fact.

"Psst! Look! There's someone with REAL problems!"

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.

You Can't Live Like That!

One of my biggest regrets of my life was the fact that I mostly kept to myself in high school. With undiagnosed Asperger's, I was too scared of screwing up socially and making myself a target and going through another living hell of bullying. So I kept quiet and barely spoke to people. I didn't open up. There were a few people I spoke to during homeroom and art class and gym, and even though I knew that we could probably be good friends, I never took the chance of letting them get to know me. I blended into the background while everyone else had, as the cliché goes, the best years of their lives. I wasn't miserable, but I wasn't particularly happy either.


You can't live like that. 


We need to create a world that is more understanding to people with Asperger's syndrome or their teenage and adult years will be, at best, limbo or, at worst, a living hell.

Articles I have had published on Asperger's Syndrome

This technically doesn't count as this week's post (that comes Wednesday) but for anybody who is interested, I got two articles published in the online edition of Autism-Asperger's Digest last year.


So here you go, something to chew on until Wednesday! :)


You will need Adobe Acrobat Reader to see these articles. It's free.


Characterizing Asperger's Syndrome 
Isn't it hard when children with AS cannot relate to anybody in real life? Sometimes reading about or watching a fictional character can be therapeutic.


Late Bloomers: Girls in Adolescence
While a lot of neurotypical girls are throwing themselves head-first into adolescence and going gaga over Cute Boys, girls with AS would rather continue their childhood pursuits and feel left behind. What's an Aspie to do?