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.
Sunday, November 17, 2019
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.
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?
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?
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