Saturday, August 8, 2020

Lemons and Lemonade (or "The Silver Lining Around the Mushroom Cloud")

As always, names have been changed...
It's just about 5 months into this COVID-19 pandemic. Since then, Massachusetts, which has done a great job of containing the virus, has entered phase 3 of reopening. On July 5th, I took the subway (mask on, of course) for the first time since March, getting myself the hell out of Quincy and going to Cambridge to go swimming in an outdoor pool. The outdoor pools are open (at lower capacity), and so is the gym. While going to the pool at the gym or an outdoor public pool is not a risk-free activity, I feel it is one of the safer risks I can take because chlorine kills the virus. I've also recently gotten to see one of my friends who already had the virus in April. He had a high fever, which indicates a strong immune response, and thus some type of immunity developed in the end. My doctor confirmed that right now he likely has some immunity, though we don't know enough about COVID-19 to know how long it will last. So I felt comfortable seeing him. I've also extended my social circle a little and hung out with my cousins, who came for a visit from Providence.

This pandemic is frustrating to no end. Until there's a vaccine, it's hard to know what the future will hold, and I dread this winter when people will be forced inside and given more opportunities to spread the virus. Even now in the summer I feel a little anxiety of what's to come next. This is one of the most horrible things to have happened in The United States (maybe THE most horrible?), with more casualties than 9/11.

That said, it is also one of the best things that has happened to me. Before anybody decides to twist things around, reads the wrong thing into my statement, no, I am not saying how wonderful it is that we have a pandemic that has killed hundreds of thousands of people. Rather, I'm saying that there's a silver lining around this mushroom cloud, a lemons and lemonade kind of thing that's happened to me in its aftermath. For one thing, I am doing a lot of writing. I'm well into writing a novel. I've tried writing many different novels over the years, but have had structural problems and have found myself stuck after writing the beginning, or have ended up writing a crappy draft. This time is different. What is also great about developing this novel is that I'm writing with characters I came up with at the end of 1996, characters who I've tried over and over to get a story out of but have been unable to. Until now. I think I'm really going to do it this time.

Additionally, stuck in full quarantine in March, April, and May, my mind started to wander. I thought back to the summer of 1997. I remembered my group trip to Israel, where I had an obsessive, autistic-style crush on a counselor named Chuck, and how I chased him around like I was Pepe LePew. This severely disrupted my experience and left me embarrassed about my behavior for years. I have had a few brief, superficial communications with Chuck over the years (ICQ, email), and we've been on Facebook together since 2008. We never kept in touch in any meaningful sense of the term. But with my wandering mind, I decided to message him. We had a good conversation, and ended up Skyping-- twice.

During our first Skype chat, Chuck and I hit it off right away and had some interesting discussions-- it turns out we have quite a bit in common, including a shared interest in brain science. We had a few good laughs about the funny things that happened on the trip in the summer of 1997. We also talked very frankly about my embarrassing behavior. I said, "Yeah, I had a thing for you and I had the subtlety of a hand grenade about it. I was embarrassed about it for years." Chuck shrugged, laughed, and said, "You were a teenage girl. These things happen. I'd like to think I handled it well, but I'm sure sometimes I didn't." I told Chuck that I gave him a lot of credit, that while he didn't always handle it well, he did the best he could for a young guy working in an era where autism was virtually unheard of. Having this discussion with Chuck was very cathartic and gave me a lot of closure that I never really had about that rough period in my life. He lives nearby, and I look forward to meeting up with him, and I hope to also meet his wife and two kids. This, of course, will probably only happen after a vaccine is developed, or when Chuck is at least more comfortable expanding his social circle during the pandemic.

Chuck isn't the only person I've reconnected with. I reconnected with Jonas, my counselor at Camp Negev and friend and mentor throughout my teenage years. Oh yeah, and my first crush. Yeah, I tended to get crushes on counselors... wow, what a dork I was! Anyway, he and I had kind of a falling out in the spring of 2001, and I haven't seen him since then. Our communication was limited to the occasional email and Facebook comment. However, we cleared the air about what happened back in the day (which I really don't want to get into the details of right now). At first, Jonas was not sure it was a good idea to video chat, but a month later, after hearing me on an alumni section on a camp podcast, he changed his mind. A couple weeks ago, we talked on Zoom. We had some good laughs about camp memories, and we filled each other in on some of what we've been up to over the past 19 years. Jonas ended by saying, "Let's stay in touch." He lives thousands of miles away, but the next time he is in New York City visiting his in-laws (which I suspect will only happen after a vaccine is developed, so I think we're talking about at least a year), I will probably head down there to see him. I definitely look forward to meeting his kids (I already know his wife; she went to the same camp).

I also reconnected with Amelia, a close friend from my age group at Camp Negev. Like Chuck and Jonas, we had been on Facebook together for years but didn't have much communication. We had a nice Skype chat and, like in my chat with Jonas, we filled each other in on what we've been up to over the past several years. She lives in the south, so it'll be a while before I get to see her in real life. I hope she comes up to Boston at some point. Or, perhaps I'll go down there. We'll see. If nothing else, we're just about due for another Skype session.

In short, because of this pandemic, I've been writing like a madwoman and reconnecting with old friends (Jonas and Amelia) and acquaintances (Chuck-- now a friend? Not sure how he'd classify the relationship from Skype alone). This mushroom cloud has indeed had silver lining, and I've turned some lemons into lemonade.

With all the horror stories that have happened as a result of COVID-19, it's nice to be able to hear something positive. Let me know in the comments if you have similar "lemons and lemonade" stories that have happened as a result of this pandemic!

Saturday, June 20, 2020

Shut Up and Listen

It has bothered me over the years that when I tell somebody a story about something I've struggled with in my life, or even something traumatic, people think the way to make me feel better and validated (if that is indeed what I'm looking for, but it usually isn't) is to say, "That happens to everyone" or "That happened to me one time..." and then they tell an anecdote that is tangentially related.

No.

Stop.

It is a simple fact that those of us on the autism spectrum have problems with things that most people take for granted. So unless your experience is really that similar (and I doubt it is), then I don't want to hear your story.

So shut up and listen.

Here are some examples of when this sort of thing has happened:

When I was a kid in the 1990s and dealing with autism in an era in which it wasn't well-known, I found myself getting obsessed with movies and television shows. I knew this was weird. I told my therapist about this, and he said, "Oh, everybody gets obsessed with things. Some people are obsessed with... relationships."

Where do I even start with this one? First of all, it was considered "normal" to be obsessed with relationships, but not with movies and television shows. And I wasn't even in a relationship, let alone getting obsessed with one. And I don't use the term "obsession" lightly, and I didn't back then. The way most people use it has the connotation of "slightly preoccupied". With me, it had the connotation of "all consuming". So no, that didn't make me feel better. It just made me feel like my shrink had no idea what he was talking about.

Shut up and listen.


Over the years, before I got the job that I've been at for three years now, whenever I told people about being fired from job after job, or having a hard time finding a job, people often would respond by telling me about being laid off and unemployed, say, for a year and a half.

No, no, no! You don't tell someone who has been chronically employed for 14 goddamned years after finishing college about the time you were jobless for a year and a half. They have nothing to do with each other, especially since chronic unemployment is textbook for autistic people.

Shut up and listen.


Last year, when I was running a debate Meetup, I got into a conversation with one of the members. I told him that I was on the autism spectrum and made some vague allusion to the fact that college was "a difficult period in my life". This guy said, "Well everybody goes through a difficult period in their life."

First of all, no. I'm not going to go into a tangent about exactly what it was, but I promise that what I went through in college was fairly unusual. To add insult to injury, the guy who said this had some kind of connective tissue disorder that made him unusually short and, with no tactful way to say it, he looked a bit odd. If he had trouble with some physical task due to his condition, it would be pretty shitty of me to tell him that everyone has trouble with [insert physical task here] sometimes.

Shut up and listen.


Recently, at a writing group, I workshopped a personal essay I wrote about an obsessive crush that I had at age sixteen during my summer group trip to Israel. As the essay made clear, this crush, on one of the counselors, had been all-consuming and seriously disrupted my experience. I chased this guy around like I was Pepe LePew and did stupid things like waiting for him outside of buildings in the middle of the night. One night I was up until 1:00 AM crying over him. 

While we were discussing my essay, I said something about how 23 years later I'm still embarrassed by my behavior. Someone thought it would be a great idea to tell me that she had a crush on a counselor when she was a kid, and she tripped and fell in front of him, and it was soooo embarrassing. 

No, no, no, no,  fucking NO! First of all, did she even read my essay? Well, yes, she did, and that's why her reaction is even more ridiculous. My piece made very clear that I was dealing with something much more serious and intense than giggling over a "cute guy". Her story about being embarrassed about falling in front of a counselor she had a crush on is not in the same universe as my embarrassment about spending an entire god damned summer obsessively chasing my crush around.

Shut up and listen.


If somebody tells you a story about something they've struggled with, just shut up and listen. Don't pretend you know how they feel. Rather than making them feel better, it comes across as dismissive and invalidating. It makes the person feel even more isolated because they are seeing further evidence that you don't appreciate the gravity of what they have to deal with. I would never tell someone starving in Africa that I know how they feel because I was hungry when I skipped lunch one time, or even because I once fasted for a day. Nor would I tell a black person that I understand how it feels to be frightened around cops, because one time I was slightly nervous around a particularly nasty one. I'm not going to tell a quadriplegic that I know how it feels not to be able to walk because I broke my ankle 25 years ago.

Really, what is so difficult about saying, "Hey, you know what? I really don't get it, but I imagine it's rough."

Or better yet, just shut up and listen.

Saturday, June 13, 2020

Things That People Didn't Get (or "And Fuck You for Saying So")

Note: As always, names changed to protect peoples' privacy.

Whew, it's been a while since my last post! Well, we're three months into social distancing, and a lot has changed. I'm now working at home, and my company just decided that this will be a permanent thing. Not thrilled about it, as I don't like being stuck home all day. I'd at least hoped that once things improved (even if in a couple years) we would be back in the office... but anyway... it is what it is.

Recently I've been thinking about things about me that people just didn't get when I was a kid, in that dark age known as the '90s. I've also been thinking about how people who barely knew me felt entitled to make objective pronouncements about certain experiences I had because, hey, I was the ultimate unreliable narrator, right (and yes, I'm being profoundly sarcastic)? I keep wishing I could go back in time and correct these people who made these comments and pronouncements and then conclude by telling them, "And fuck you for saying so."

Here are a few gems from my childhood:

1. Between the ages of 11 and 14, I went to a therapist who had no idea what autism was. Well, to be fair, in the '90s nobody knew about it. So instead of just being honest and saying he had no idea what was going on, at our last appointment he gave me an index card on which he'd hand written a "diagnosis": "Difficulty picking up on social cues and adjusting to new situations."
Okay, first of all, these are symptoms, not a diagnosis. Having difficulty picking up on social cues is, of course, a hallmark of autism. But back then an autism diagnosis wasn't even on the table. As for "adjusting to new situations"? That too is a sign of autism, but it's one I never had. I don't know where this assessment came from. Christ, even when I was a kid my parents commented that I was good at trying new things. And contrary to the stereotype of the autistic kid who gets upset when their routine is disrupted, nope, never an issue for me. And I would've been thrilled at the idea of going to a new school-- specifically, a small, private school-- because I was being emotionally abused by my peers.
And at the time of Dr. Bonehead's "diagnosis", I was getting ready to go to overnight camp for the first time. And guess whose idea it was? Mine. My parents didn't even suggest it. I had aged out of my day camp and decided to go to Camp Negev because my brother had gone there and loved it. So as far as having "difficulty... adjusting to new situations"? No, I don't. I never did. 
 And fuck you for saying so.


Backstory for the next 3 items:

I went to Camp Negev for 2 wonderful summers, in 1995 and 1996. 1995 was difficult in the beginning because after years of emotional abuse at school I was a bit guarded and on edge. I wasn't homesick, I wasn't upset that my routine had changed, or anything else that people reading this who are familiar with autism stereotypes are probably thinking about. No. It was because I was terrified that I was going to be emotionally abused again. Fortunately, my counselor, Jonas, reached out to help me become more relaxed, and he was a great friend and mentor for a few years. If not for him, I wouldn't have begged to stay second session, let alone come back in 1996.

In 1997, I went on a summer trip to Israel, one associated with Camp Negev. There, I developed an obsessive crush on Chuck, one of my counselors. I had a really difficult time because this obsession disrupted my summer (obsessive crushes are very common for people on the autism spectrum). My mind was all over the map, my mood swung at the slightest provocation, and my behaviors were erratic. I spent the year in sober reflection, but the damage had been done. I came back to Camp Negev in 1998 for the C.I.T. program, but they wouldn't let  me work with kids until second session because of "concerns" based on my Israel trip evaluation.

Fellow C.I.T.s commented that they'd seen significant growth in me and thought that I wasn't given enough credit. I, like other C.I.T.s, noticed that a lot of counselors were more concerned about smoking pot and engaging in the fraternity culture of the staff at Camp Negev than being good counselors. There was an alarming lack of responsibility when it came to the kids. I picked up a lot of the slack but, like many people on the spectrum, wasn't given credit for it. As is also textbook for people on the spectrum, an honest mistake-- such as saying, "Oh shit!" when not realizing that an eight-year-old kid is standing behind me-- was seen as a major infraction. Meanwhile, leaving kids alone in their cabins so they could go to the lounge and smoke weed was perfectly acceptable. The stress caused by the injustice eventually took its toll. I had two meltdowns during that summer. It was a significant improvement from the Israel trip, but these meltdowns proved to be the nail in the coffin for a future as a counselor at Camp Negev.

2. At camp when my counselors broke the news to me that I wasn't going to be able to work with kids because of their "concerns", my counselor, David, told me, "You're going to have to prove that you can change." No, it wasn't, "These are things that you have to work on", but rather "you need to change" because, hey, who I am at my core is wrong, right? This was just one of many times all summer when he was short, rude, and nasty to me. Telling someone that they need to change instead of working on some things is a really cruel, callous thing to say.
And fuck you for saying so. 

3. A couple months after camp, I wanted to apply for the gap-year Israel trip. Unfortunately, with my application I received a cover letter that essentially told me that they had "reservations". One of the reservations was that they thought I wouldn't be able to work in groups and that the "unfamiliar settings" would be a problem for me. I called the central office and asked for my C.I.T. evaluation. As I predicted, it cited inconsequential things that I did wrong and commented, "Could not be dealt with on a level that was appropriate for the C.I.T. program."
Um, wow? First of all, with all the pressure I was under that summer, I would like to see anybody not blow up at some point. Second, there is very little doubt in my mind that David wrote the evaluation without the help of my other counselor,  a wonderful person who had a more nuanced view of the summer. And why the hell was there this "unfamiliar situations" thing thrown in again? Once again, going to Camp Negev was my idea. Going to Israel was my idea. And I wanted to go back to Israel for the gap year program. A friendly reminder, I have never had issues with being in "unfamiliar settings".
And fuck you for saying so.

4. At a winter 1998 reunion, I confronted David about my evaluation. I talked about all the good things that I had done that I wasn't given credit for that summer and how lots of counselors got away with egregious inappropriateness.  David had the audacity to tell me that I "did not have a good summer", citing the two meltdowns (which, back then, people dismissed as childish temper tantrums instead of the end result of intense, complex emotions). Um, actually, yes I did have a good summer. Did I get frustrated at times? Yes. But life isn't black and white. I generally had a good time that summer. But oh, no, David told me that not only did I not have a good summer then, but that I didn't have a good summer in 1995 or 1996. David wasn't even my counselor those two years, so it wasn't like he had spent any time with me. This is just one of many times when someone in my childhood told me that how I felt about an experience I had was objectively wrong. Telling me that I didn't have a good summer when I felt that I did was a lousy, dismissive, invalidating thing to say.
And fuck you for saying so. 

5. When I was in 9th grade, I stormed out of class one day because my former friends-turned-enemies had been bullying me for the millionth time. A student teacher had been supervising the class, and as I walked through the hallway, I ran into my regular teacher. He took one look at me and shook his head. He said, "Every day with you it's the same thing. You can't handle your problems and you end up crying. Go to guidance."
I couldn't handle my problems? I was tired of being abused and I removed myself from the situation. How is that not handling my problems? And let's not forget the problems that the other kids had where they felt it was okay to bully me. Or was the fact that I was constantly bullied an indicator that I was the problem, not the other kids? 
When somebody is taking care of themselves after endless torment, that is not reflective of their inability to handle their problems.
And fuck you for saying so.

  

Monday, January 6, 2020

Yet Another Post on How We Conflate Conformity and Maturity (in Girls)

Names changed to protect the privacy... you know the drill...

I was really upset when I opened the present that Mrs. Z. got me for my fourteenth birthday.

Inside the neatly-wrapped box was an ornate, silver brush-and-comb set. As I stared incredulously at the present, I wondered how Mrs. Z. would think that this is something that I would like. In fact, she knew that this was something I would vehemently dislike. Mrs. Z. was a friend of my mother's; she and Mom once taught at the same school together. I often called Mrs. Z. on the phone to tell her about ridiculous things that my mother did, such as accidentally driving away from Pizza Hut with a salad sitting on the roof of the car. In addition to telling Mrs. Z. stories like this, I also complained to her about my mother, specifically about Mom trying to make me more feminine in dress and behavior, traditionally-gendered expectations that I felt deeply uncomfortable with. I would often comment that my mother was stuck in the 1950s. Mrs. Z. would act like she agreed with me and would laugh with me about it.

By the time my fourteenth birthday rolled around, I was still complaining to Mrs. Z about my mother. So why in the world would she buy this gift for me? She knew I strongly identified as a tomboy, and she knew that I had a variety of interests: drawing and animation, acting, woodworking, ceramics, books, writing, animals, and computers... And yet she spent $15.00 -- about $25 today, after adjusting for inflation-- on something she knew I wouldn't like.  I wasn't upset merely because she got me something I disliked. This wasn't like the time when I was seven or eight and a babysitter, who barely knew me, saw the dolls that my mother had put in my room, assumed that I loved them, and got me a new doll as a present. Mrs. Z. was someone who explicitly knew what my likes and dislikes were. I was even a little insulted by this present, but more than anything, what I was upset about was what this present seemed to represent: a strong statement that Mrs. Z. felt that my mother was right, and that it was time for me to "outgrow" that "tomboy stage" and become a "young woman". The implication was clearly that being a tomboy was considered a sign of immaturity. 

When I was visiting my parents this past Christmas, Mom said, "Look what I found" and handed me the box with the brush and comb. I muttered, "Oh, God," and we both laughed. Just like a quarter of a century ago, I was incredulous that Mrs. Z. thought I would like this, and I said so to my mother. Mom commented, "But she saw that you were growing up and thought that you might change." Change? Change from what? Change to what? That I might outgrow my interests in drawing and animation, acting, woodworking, ceramics, books, writing, animals, and computers in favor of becoming a "mature young lady" who spends copious amounts of time in front of the mirror? Yes, I know that this is a false dichotomy, but when someone spends money on something that they know you won't like, it speaks volumes about what their expectations are.

Recently, I was telling this story to my friend, Meg, whom I've known for about twenty years. She commented that she would not have liked getting an ornate brush and comb set for her fourteenth birthday, and we both felt that it was common sense that many girls wouldn't either. She agreed with my observations about the standards set for girls, and even commented that girls-- whether they are tomboys or not-- seem to be expected to give up their childhood interests in favor of fashion, makeup, and attracting boys. She also said that there seems to be an expectation that girls put everyone else before themselves, whereas boys don't have that expectation. She also told me that on the first day of seventh grade, a number of friends seemed to have drastically changed over the summer. These friends were not even recognizable from their previous incarnations. Gone-- or at least deprioritized-- were their childhood interests, only to be replaced with constant talk about boys, clothes, and makeup. Meg suddenly had nothing in common with these girls, and their friendships were over. I saw a similar drastic change in one of my (very few) friends in the middle of eighth grade, and our friendship ended. 

Right now I can imagine many parents reading this saying, "Well, that's just peer pressure! Of course I wouldn't want my daughter to lose her childhood interests!" That may be true, but it seems people still expect girls to undergo a drastic change between childhood and adolescence that people don't expect for boys. If Caleb is still playing with Legos when he's thirteen, then so what? But if Emma is still playing with Legos-- or even playing with dolls-- when she's thirteen, then it's seen as immature. Additionally, there seems to be an expected rite-of-passage passed from mothers to daughters that emphasizes learning to look pretty. Yes, there are some fathers-- often homophobic fathers-- who relentlessly pressure their sons into sports even if the boy hates sports. But aside from them, there doesn't seem to be an equivalent between fathers and sons. In fact, sports are at least something a kid can be active in, that's good for their body and their brain, something that requires talent. It's not something they're expected to do to please society at large. 

The equivalent to getting me a brush-and-comb set for my fourteenth birthday might be getting a boy a set of weights so that he can work on building muscle to impress the girls. But even that, like sports, has a physiological benefit for the boy and involves developing a skillset. And I think the reason that there really isn't this equivalent in boys is because all of my aforementioned, gender-neutral interests would be considered "masculine enough" for all but the most homophobic fathers. Unless blatantly stereotypically feminine-- such as ballet-- it seems that interests, by default, are a boy thing. For girls, it has to be something explicitly stereotypically feminine to be considered a mark of a "mature young lady", as if feminine gender expression and interests make a girl more mature, just because it involves conformity. 

But the problem is, as I've said, that a lot of the things that girls are expected to do-- such as spending a lot of time on their hair and putting on makeup-- involve pleasing others. In fact, if Mrs. Z. had even gotten me a pair of ballet shoes instead of a brush and comb set, I would've felt differently. I would've been disappointed and perplexed, as I wasn't interested in ballet-- or any kind of dancing-- but I don't think I would've been insulted. Ballet at least is an active activity, a hobby, an interest, and something that involves talent. But when Mrs. Z. got me the brush-and-comb set, I was more than just insulted: I was utterly horrified. In short, this present was a big "fuck you" to me, and it spoke volumes about what people expected of me-- even people who I thought understood and supported me. If I didn't eventually conform to these expectations, then what would it mean? What would become of me?

It's 2020, and a different world than it was in 1994. I think the expectations of girls that I mentioned in this post are not nearly as narrow as they were twenty-five years ago. I think there has been a lot of positive and rapid change in that regard in the 21st century, particularly in the past ten years or so, but there is still definitely some work to do on this front. 

Notice that I didn't mention Asperger's Syndrome even once in this post. But I think that the connection to it is clear. 

Sunday, November 17, 2019

Progress in the 21st Century

I often tell people that I was born in the wrong decade.

I look at autistic kids who were born in 2000 or later-- a good 20+ years after me-- and I envy them. They were born into a world in which unprecedented progress in the understanding of the human mind-- professionally and publicly-- has increased exponentially since I was a kid. They get individualized education plans (IEPs) based on their needs. Does the kid have auditory processing disorder (a condition often comorbid with autism)? They'll will be seated at the front of the classroom where they will be less likely to be bombarded with extraneous noise that would otherwise make it difficult for them to process the teacher's instructions. Does the kid miss social cues? No problem-- there will be time set aside to work with the kid on social skills, and the teacher will forgive the child for missing something that most of the world takes for granted. Does the kid have esoteric interests? Well, then the teacher had better at least try to understand them instead of dismissing them. Does the autistic kid do better working alone than in groups? Then the kid will be allowed to work alone even when the rest of the class is working in groups. And if there is a project where groups are mandatory, the teacher will handpick students that they know will get along best with this kid. Is there bullying? If the teacher tells the student to "just ignore" it, then a lot of people will think the teacher is ignorant.

If only "autism" had been a word in the '90s, at least outside the context of Rainman, then my life would have been much different,  my childhood less of the nightmare that it was. Between the kids that bullied me emotionally and physically, the sometimes-callous teachers who told me to "just ignore" it, and my well-meaning-but-tragically-misguided parents who thought they needed to change me, my life was often a living hell. My parents get it now and realize that they made some serious, non-trivial mistakes. But even today I wake up screaming from nightmares about being a kid and arguing with my mother about certain things about me-- such as my androgynous sense of gender and concurrent gender expression-- that I knew were never going to change. My parents thought they were helping me, but the reality was I often did not feel completely comfortable in my own house. As a teenager, the only place I felt comfortable was my progressive overnight camp. Today, I compare it to the way Harry Potter felt going to Hogwarts.

I was born in 1980. As much as I complain about growing up in the '90s-- what I refer to as the final decade of the dark ages-- I realize how much worse it would have been had I been born in 1930, 1950, or even 1970. I look back at the way autistic people (or people who in hindsight probably were autistic) were treated in decades and centuries past and find myself getting infuriated. I think about how often people were institutionalized, sometimes just for having unpopular opinions. An autistic person having a meltdown? Forget it. Whereas today we better understand that a meltdown is the result of extreme frustration that most other people don't experience-- and NOT the same thing as a temper tantrum, which is something a child does to protest not getting their way-- what did people think it was 100 years ago? Or 50 years ago? Probably insanity, grounds for institutionalization. Hell, even in the '90s, people dismissed my meltdowns-- which I tried VERY hard to control-- as temper tantrums. I didn't have the words for them, but I knew that's not what they were, and I felt insulted as a teenager when people dismissed my genuine hurt and frustration about a certain situation (usually a social issue) as a temper tantrum.

I think about the ways people with other disabilities were treated. Deaf? No sign language for you! You'd better learn to read lips! Gesturing, let alone a gesture-based language- isn't normal! This was as recent as THE GODDAMNED 1960s, as illustrated in the film Mr. Holland's Opus

These poor old souls, what they must have gone through in a world that didn't want to even try to understand them, let alone accept them.

But, to quote Dr. Jack Kevorkian, "That's the way the world runs. It advances slow, and somebody gets burned-- badly."

But it advances, and that's what's important. I'm immediately suspicious of the mindset of someone who laments about "the good old days" and rhetorically asks, "What's the world coming to?" The good old days when autistic people were locked up? When deaf people were not allowed to learn sign language? When black people were legally segregated?

What the world is coming to is progress. Change seems scary to some people, but change is going to happen. Does some change worry me? Yes. We are making significant leaps in artificial intelligence technology. I can think of a million things that can go wrong. I think of all the sci-fi stories about intelligent robots killing humans. But I also see AI as being something that can do a lot of good. For one thing, it's probably easier to teach a computer than a human to be unbiased when interviewing an intelligent but socially awkward autistic person. It will be difficult to teach the computer, because computers are made by humans after all, but I'm confident that we'll get there. One time, my grandmother was talking to me about how the idea of AI scares her. I asked her what she thought about how we have a device that can fit in our pockets and that has access to an unbelievable amount of information. She said she thought it was interesting. I asked her what she would have thought had someone told her in the 1950s that this device would eventually be invented. She said it would have scared her.

Well, there you go. Despite all the problems that exist in the world (the asshole in the White House, climate change), we are overall living in the best of times. As we prepare to enter the '20s, let's make them the Roaring '20s... Roaring with progress, that is.


Tuesday, September 10, 2019

Autistic People Who Join Cults

I was recently listening to a podcast about the Heaven's Gate cult and its members' mass suicide. For anybody living under a rock or who wasn't yet born in 1997 when this was all over the news, Heaven's Gate was an offshoot of Christianity that taught its followers that the cult's leader, Marshall Applewhite, was the second coming of Jesus. They believed that in order to get to "the next level" (heaven, if you will), spaceships would come to Earth and pick up the followers for a trip to celestial paradise. But then when the comet Hale-Bopp was discovered, Marshall Applewhite came to the conclusion that the spaceship that was to escort his followers to paradise was trailing the comet. It would not land, and the only way to board the ship was to "leave one's vehicle"-- one's body. That is, commit suicide, so that one's soul will be sent to the ship.

On March 26, 1997, one of the surviving members anonymously called the police to report the mass suicide (he came forward later about his identity). The next morning, the story was all over the news. The Heaven's Gate website had so much traffic that morning that people often had to keep hitting "refresh" several times before the page would load.

I was sixteen years old when this story was in the news, and I was simply floored by it. How could anybody believe that committing suicide would send their souls to a spaceship trailing a comet? I remember that my dad commented that it's too easy to lead people down a path, that it's how Hitler was successful in getting people to buy into the Nazi ideology. Now that I'm older and have read a bit about evolutionary psychology, I have a better understanding why. There is no limit to what people will believe if a charismatic leader knows which buttons to push. Scientists, such as Steven Pinker and Richard Dawkins, have hypothesized that this tendency to believe what your parents, tribal elders, or some other authority figure tell you helped our ancestors survive in the African Savannah, a setting that was rife with predators, disease, and rival tribes who would fight with you over resources. People who were skeptical of things like, "Don't swim there. You could be eaten by a crocodile" were less likely to survive and reproduce. And these people's brains didn't differentiate between the aforementioned sound advice and something absurd, such as, "If you don't sacrifice an animal for the gods, there will be a terrible famine."

Evolution, of course, did not account for the fact that by 1997, a huge portion of the world would be living in houses, have plenty of food at their fingertips, and not be in situations where there would be predatory animals that could eat them. In 1997 (and in 2019, of course) the human mind still carried baggage of its evolutionary history. This inexorable drive to believe the absurd claims of a charismatic alpha male and to cave into peer pressure was alive and well. It is one of those things that makes us unique as a social species.

That's why it shocked me when I recently found out that one of the members of Heaven's Gate was autistic (and to clarify, he had left the group itself before the mass suicide, but still maintained the beliefs. When he learned about the suicide, he killed himself so he could join his friends on the ship). Autistic people are less likely to follow leaders, to cave into peer pressure, to do the social dances that most of us take for granted. In fact, many of them will just see these dances as utterly absurd and ridiculous. What, then, would drive an autistic person to join Heaven's Gate?, I wondered. But after thinking about it for about five minutes, I realized that in a way it did make sense that some autistic people might join a cult. They're the exception, not the rule, of course, and they probably join for different reasons than their neurotypical peers. And when I generated my hypothesis as to why, it just saddened me.

I can't speak for the guy who joined Heaven's Gate, and in case his family is reading this, I don't want to upset them by speculating about the guy's environment (and I don't want to name him either, even though it is of course easy enough to Google). But in general I can see what might lead someone on the spectrum down this destructive path. I can see it from examples in my own life.

Think about it: You go through your entire life hearing the same damned mantra from well-meaning but tragically misguided family, teachers, and peers, "You don't know how to interact with people." "You don't get it." "You're inappropriate." "You make people uncomfortable." And so forth. You try hard to figure out the social rules, but they are not written in stone and are subject to change upon context. You deal with unbelievable anxiety. You are unintentionally gaslit by the same people, who tell you that you misinterpret friendly teasing as bullying (even though you know damn well that it's bullying), that someone who said something bitingly personal and nasty was "just frustrated and wasn't trying to be mean" (but you knew damn well that he was), and who even dismiss egregious behavior by friends as normal. Your life consists of internalized psychological warfare, and eventually don't trust your own perception in regard to the most mundane, everyday things. It's when I consider this that I realize that yes, of course, a cult might seem like it makes sense to someone in that position.

In cults-- or even some sects of mainstream religion, for that matter-- the rules of social interaction are highly regulated: Don't use certain words; eat this, not that; eat this meal at this time and say these words before the meal; don't interact in a particular way with the opposite sex until you're married; have children by this age; and so on. Or in the case of Heaven's Gate, sex is evil, so sterilization is recommended. Again, I don't want to speculate about the autistic member of Heaven's Gate in particular. But many of us on the spectrum are asexual on top of all the other crap that makes our lives difficult. Imagine, too, being told that your lack of (or relative lack of) interest in dating, sex, or both is wrong, unhealthy, a mental illness, etc. Even if people don't tell you these things, you might feel left out if everyone you know is running off to get married and have kids. Join this group, and you won't feel left out when you're the only person who isn't passionately screwing somebody. Not only will you not only not be expected to get laid, you'll be expected not to get laid.

The more I thought about the aforementioned as possible factors that would make an autistic person join a cult, the more sense it made. Although a vulnerable autistic person is in a much better situation if they're coming of age in 2019, in 1997 the Heaven's Gate member was living in what I call the Final Decade of the Dark Ages for autistic people, an era in which to most people "autistic" meant you didn't talk, and "Asperger's" was a virtually non-existent word. Not to mention, it was also an era in which an autistic person's eccentricities and difficulties were dismissed as "behavioral problems". I am sure that a lot of people are tempted to say, "Oh, you know what? Autistic people are just more gullible." Yeah, okay. Some of them are, about things like a kid trying to screw with you by sarcastically saying, "You're soooo cool!" (stuff like that never got past me, however; my radar was always finely-tuned to such things). But in terms of believing cult leaders? No. A lot of neurotypical people join cults, and let's not forget that many neurotypical people believe in some of the more absurd claims of mainstream religion, such as that a 600-year-old man built an ark that could fit two of every animal species on the planet. So no, please don't try the "autistic people are more gullible" crap to explain away why they might join a cult.

Thinking about these things made me angry, angry enough to put my fist through a wall. It's only been in the past decade really that mainstream society is starting to see the hurt they've inadvertently caused autistic people even when they meant to help them. It's only now that they're seeing the anxiety they cause when they try to make autistic people adapt to the neurotypical world, but never vice-versa. The story about the autistic Heaven's Gate member is really heartbreaking, but in hindsight it's not surprising.

Tuesday, August 13, 2019

Prosopagnosia (Face blindness)

Jeez, I can't believe how long it's been since I've written a post! I really need to write these more often.

Yes, it's been far too long! A lot has happened since my last post. For one thing, I'm no longer in Boston but in nearby Quincy. The landlord for my old apartment sold my unit-- which had been a steal-- and everything else in the area was approaching New York City prices. Quincy is expensive too, but still a bit less than Boston. It's also near the subway lines, so I moved to my new place-- a nice, one-bedroom apartment-- at the end of last October. I miss living in Boston proper, but at least I'm in a large apartment instead of a studio.

So, today's topic is prosopagnosia... let's discuss!

I am one of many people on the autism spectrum who also has prosopagnosia. Prosopagnosia is a neurological condition that makes it difficult for the afflicted to recognize faces. In my case, it takes me longer than other people to learn new faces. Some people have the condition so severely that they fail to recognize family members-- even spouses-- if they so much as wear a drastically different hairstyle.

I was only identified with prosopagnosia recently, but I long suspected that I have it. I am just terrible at learning new faces. When I was a teenager on my group trip to Israel, I made a friend on the first day. The next day, the friend changed her clothes and I didn't recognize her. This eventually passed, but it took a few days for me to be able to recognize her no matter what she wore.

Throughout my life, I've asked the same new people their names over and over again. It takes me a while to be able to recognize someone at work out of context. As a kid, other kids took advantage of this aspect about me by harassing me, knowing I could not report them because I wouldn't know who they were. Sometimes, my mother would ask me, "Who are these kids?" I would say, "I've never seen them in my life." Except I probably had, several times! When my parents would drop me off at a camp event during the school year, they would ask, "Do you see anybody you know?" I would quickly scan the area for kids in my group, because they were the only kids I recognized. Even if I didn't spot them, sometimes I'd lie and say, "Yes" because I knew that I was supposed to be dropped off at a particular spot anyway, and I'd find them. I didn't want to deal with my parents asking me why I didn't know if I saw other kids from camp, even if they thought such a question would help me.

Prosopagnosia can often be embarrassing. Even before I knew the word for it, I felt ashamed of my problem. Whatever it was, I knew it was an issue that other kids didn't deal with. Sometimes in school if one "friend" was gossiping about other kids, she would say, "Oh, so you know So-and-So?" I would say, "What about her?" And she'd say, "Well, do you know who I'm talking about?" I would lie and say, "Yes," just hoping that the friend would get the story over with. I felt like a complete idiot because I knew that whoever my friend was talking about was probably in several classes with me. But what could I do? The same thing that closeted gay kids did (and probably still do sometimes) when asked, "Who do you have a crush on?" They just play along, pretending to be what society deems "normal" so that they won't be humiliated. And when I worked as a children's librarian, I felt like a complete jerk for not knowing the kids' names. I knew that people probably interpreted that as me not caring. I think it's worse for a woman to have prosopagnosia, because in society women are expected to have the "nurture" setting as their default. That's not me.

And to be honest, while I do care about humanity at large and about individual people once I get to know them, at first glance human faces are all but meaningless to me. Until I get to know the person-- or at least something about them-- I see just a meat bag, a naked mole rat-- take your pick. And I actually wonder if this has something to do with my demisexual/demiromantic orientation. Think about it: Most people get into relationships after an initial attraction based on physical appearance. That doesn't work for me. It's literally impossible for me to think of someone as romantically/sexually attractive until I get to know them in some way. And if people are "meat bags" to me at first glance, why would I feel attracted to someone? As is with demisexual and demiromantic people, attraction is very rare for me.

But as for prosopagnosia as it affects my daily life, fortunately as society marches forward through the 21st century, there is greater understanding. People at work know that I have it, and they don't judge me if it takes me forever to learn new faces or if I get two new people mixed up. They understand and we laugh it off. I'm now comfortable telling people outside of work that I have this problem, and am glad to be living in a time where we can address these issues openly and frankly. There's less anxiety involved when I can just explain to people that, yes, I'm terrible with faces, and yes I will ask your name over and over.

Yes, and so what?