How Did They Not Know?

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Is It Ableism? Part 9: Unintentional Gaslighting

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Is It Ableism? Part 8: Immaturity or "The Blog Post Where I Have a Meltdown"

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Is It Ableism? Part 5: Is "Overcoming" Worth It?

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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.

Growth vs. Change

As always, all names are pseudonyms...

Whoa, it's been 5 months since my last update! Well, a lot has been going on. For one thing, I'm almost finished the first draft of a novel that I hope to eventually publish. I am shooting for the end of the month (that is, in a week!) to have this draft finished. I've been trying on and off to write about this particular set of characters since the end of 1996, and it never got anywhere beyond a series of crappy and disjointed episodes. Well, this time it finally has, and I think I have a solid story in the works.

Now onto today's topic: growth vs. change. A couple weeks ago, I was talking on Zoom to Chuck, a counselor from my 1997 Israel trip with whom I reconnected last year. We have been chatting pretty regularly (usually once a month) since we reconnected at the beginning of the COVID-19 pandemic. I asked him if he remembered a particular time when the counselors led an "obscene sculpture contest" on the beach of a kibbutz we were staying at. He said he did, and I asked him whose idea it was. He admitted, "It might have been mine." Now that I think about it, I seem to recall that it might have been the idea of this other counselor who was a real smartass. But hardly the point. I laughed and said something like, "If only your kids knew. When you're a kid you like to think that your parents are these boring 'proper' people but you eventually learn that they did all the same ridiculous things that you did." Chuck laughed and said, "I really haven't changed since then. I'm still the same guy. It's just that now I'm a parent."

I was glad to hear somebody, anybody, say that. I reflexively cringe at phrases like, "People change" and "relationships change" especially when talking about someone who gets married and has kids. It's as if when someone gets married and has kids they're expected to be replaced by a pod person who has nothing to do with the person they once were. I associate these phrases with people having ditched me, sometimes inexplicably, including at least one time that involved ghosting. When I was a kid, my mom said "relationships change" and "people change" when I was in ninth grade and my "friends" caved into peer pressure and turned their backs on me. She said the same thing when I was 27 and Melanie, my best friend for more than half my life, ghosted me without explanation and didn't invite me to her wedding. Actually, she said it every single time a friendship came to a sudden end. These phrases carry horrible baggage for me, because the message I ended up getting was, "These people outgrew you. And their erratic actions were normal in response to someone like you."

Because the reality is that I haven't changed, and I told Chuck as much. And it's true: I still have the same interests as I did 23 1/2 years ago. I'm still irreverent. I'm still tomboyish/androgynous. Hell, I still think about a lot of things the same way as I did decades ago. Once, in 2015, I was telling someone a story about a conflict I had gotten into with my mother when I was in high school. Later, I found a school journal entry I had written right after the incident happened in 1998. The same points I made when defending my perspective in 2015 were all outlined in the journal entry, all with eerily similar wording. It didn't matter that 17 years had passed since the incident; I was still thinking about it in almost exactly the same way, right down to how I phrased things.

That isn't to say I haven't grown. I had a lot of issues in the summer of 1997 (and around then) but now they are largely under control. I had poor executive functioning in that I would say stupid things and regret them a nanosecond after they were out of my mouth (the "lacking a filter" issue common to people on the spectrum). I had extremely high anxiety and had a lot of meltdowns. Part of the issue was that back then autism was only used to describe people like the eponymous character in the 1988 film Rainman; I wasn't diagnosed until 2003. These issues have largely resolved with time, my growing understanding of the issues, and a whopping dose of SSRIs (which I've been on since 1999, the second half of my senior year of high school). I still have anxiety about certain things. I still have the occasional meltdown, but it's very rare and only in very specific circumstances. When it happens I am usually alone or dealing with my family. I have a good relationship with them, but the reality is we carry a lot of baggage and it sometimes comes to the surface and sets me off. As for the "filter", it usually does what it's supposed to, but I'm not perfect. I'd like to think that I've grown since then, and I believe I have.

"Oh, but see, isn't that change?" No, it isn't. Why? Because, my dear, what I described are adjustments, alterations to certain behaviors, not changes of who I am at my core. I'm still a smartass. I'm someone who will stand up on a chair in a restaurant and do the Pee-Wee dance when the song "Tequila" comes on. It's just that I'm more discriminating in terms of where I do these things; the "Tequila" incident was in a Manhattan restaurant with friends-- this sort of thing happens in public spaces in New York City quite a bit, so it's more acceptable there. I realize that I may be debating a semantic issue, but that doesn't mean that semantics are irrelevant. I'm older and wiser but, bottom line, I'm still me. 

So when should the word "change" be used instead of "growth"? I think when somebody's core persona changes. To use an extreme example, let's look at Frank Meeink, the former skinhead whose life loosely inspired the 1998 film, American History X. He was entrenched in an ideology that informed every aspect of his personality and his life. He even went to prison because he almost killed somebody. In prison, he found himself in sober reflection after interacting with black inmates on a regular basis. Today he is a changed man, and regularly educates people on the poison of racism and white supremacy.

I guess the word "change" also has more baggage with me, not just because of my mom's comments about people "changing" and relationships "changing", but also because over the years many people implored me to change, carrying the implication that there was something horribly defective about me: parents, teachers, peers, you name it. More then a few times when I had a social setback that was ultimately the result of an honest mistake and not rooted in maliciousness, someone said, "You could look at this as a positive opportunity to change."

"And my answer to that," to quote Bill Maher in one of his routines, "is fuck you."

And really, I was thinking about the issue of growth vs. change when I was in high school. My stance on it hasn't changed since then.

Why should it?

They are Hurting

I was thinking about some misunderstandings that I experienced while growing up. I think it's important that I share them. I hope this brief list will help clarify to parents what they are seeing in their children with Asperger's:

Children with Asperger's generally don't scream and throw things to get attention. Often they are frustrated because of how the world doesn't understand them. 

They are hurting.

Children with Asperger's don't hit themselves or engage in any other kind of self-harm to get attention. They are frustrated at the world for not understanding them and angry at themselves because they feel they can't do anything right.

They are hurting.

Children with Asperger's Syndrome who cry at the drop of a hat are not necessarily "immature". They are phenomenally frustrated and there is only so much frustration they can take.

They are hurting.

Children with Asperger's Syndrome who retreat into themselves are not doing it because they are immature, rude, or "not brought up right". They have too many emotional scars, possibly from bullying, and are afraid of experiencing further problems with others.

They are hurting.

Children with Asperger's Syndrome who storm out of a room in anger to get away from people who are frustrating them are not spoiled, selfish, immature brats.

They are hurting.

Children with Asperger's Syndrome don't hit the kid who was calling them names because they're "psycho". There is only so much they can take before they fight back, even physically.

They are hurting. 

Children with Asperger's Syndrome who cry because they were the last to get a lollipop are not upset because they're just immature and have to learn that they can't always go first. Rather, they are tired of being last at everything, left out of everything, even in a situation as trivial as this. 

They are hurting.

Children with Asperger's Syndrome are not crazy.

They are hurting.

I can only imagine how many people with Asperger's Syndrome were institutionalized back in more ignorant times. Those poor, tortured souls. Sometimes I imagine I would have been institutionalized had I been born in 1950 instead of 1980.