Dear Well-Meaning but Misguided Professional Allies,
Could you please stop using the word "challenges" when describing the struggles, turmoil, and often pure hell that autistic people go through? It's really, really irritating. When you write articles about how it's "challenging" for autistic kids to make and keep friends or "challenging" for autistic adults to find and keep jobs, you are missing the mark. I know you mean well, but when you use such words I strongly suspect that you don't appreciate the reality of living on the autism spectrum. I also suspect that it is your way of being "sensitive" and "politically correct", that you are afraid of offending us by using more direct and honest terms. But all it does is undermine and minimize our realities and ultimately fail to educate the general population. You are using euphemisms, which I absolutely HATE.
Why do I hate euphemisms? Ultimately, euphemisms are an inaccurate representation of the reality that they are attempting to address. It also has an undertone of denial. For example, the euphemism "passed away". Okay, I can understand using "passed away" when a 90-year-old dies in their sleep, but using "passed away" when someone is shot and killed with an AR-15 in a school shooting or falls off a cliff while hiking the Grand Canyon, is abhorrent. The school shooting victim was MURDERED. The person who fell off the cliff in the Grand Canyon DIED. This over-the-top, euphemistic language perpetuates a culture that is in denial about death, but that's another discussion altogether.
Now that you have a solid example of why I don't like euphemisms, let's talk about "challenges" and why its usage when describing autistic people's lives is intellectually dishonest. First of all, a "challenge" describes something positive. Doing a puzzle is a challenge. Taking an advanced-placement calculus class is a challenge. Hell, even climbing a mountain is a challenge. It is something the person is choosing to do to improve their brains, physical strength, and so forth-- and they can back out at any time if the task proves too difficult.
Saying that an autistic person is "challenged" when describing the tortuous attempts to accomplish the necessary day-to-day tasks for social and financial survival that the neurotypical world takes for granted is a completely inaccurate assessment of what many of us go through. Nobody would dare tell a person in a wheelchair who falls down a flight of stairs because they weren't provided a wheelchair ramp that entering the building was "challenging" for them. Likewise, you shouldn't describe a bullied autistic child's repeated failures to make and keep friends "challenging". And an autistic adult with a Master's degree who is only able to obtain and keep $12/hour data entry jobs is not someone who finds obtaining employment "challenging". In these two examples, these people are often tormented and tortured by these realities, which are often because the neurotypical world at large does not understand autism and in many cases can't be bothered to do so. Even in 2018, autistic kids are often still told that they bring the bullying upon themselves, and autistic adults who can't find rewarding work are often told that they're "not trying hard enough." And let's not forget how often people tell us that we are "making excuses".
These days I generally make friends with ease (though my close friends are few), and after fourteen years I finally have a rewarding job as a graphic artist. On May 30th, it'll have been a year since I've had this job. And yes, I said fourteen YEARS. Not months, YEARS. I spent those years going back to school-- I went back TWICE-- only to hit the same brick walls as I had after finishing my undergraduate degree in 2003 as an autistic person in a post-9/11 New York City economy. In one case, after going back to school for library science, I was fired from two children's librarian jobs due to lack of understanding among my employers and the parents. In the second case, I took a web development immersive, only to discover that I have non-verbal learning disability which makes things like programming overwhelmingly difficult for me to learn (so much for the stereotype that autistic people are programming geniuses). I wouldn't dream of describing these fourteen years as "challenging". I'd describe them as difficult, frustrating, torturous, and sometimes pure hell. If you think that "challenging" is the appropriate word to describe these experiences, then you simply don't get it.
I am not trying to enforce prescriptive language-- I hate that as well. What I am asking you to do is to raise your consciousness. Think about what words you are using and why. Don't patronize us. And when in doubt, ASK.
Regards,
Julie
Sunday, April 22, 2018
Saturday, March 24, 2018
I Am Moana!
Jeez, it's been another long time since I've posted one of these. Once again, I'm sorry! Updates: My job is going well. I also had my surgery to coil and stent my aneurysm last September, and I'm going for a follow-up angiogram in about a month to make sure everything is healing properly.
As you can see, the title of the blog posts alludes to the name of a song in the Disney movie Moana and, of course, the movie Moana itself. The other day, I had a really interesting-- and frustrating-- thread about this movie. It started when I posted this:
As you can see, the title of the blog posts alludes to the name of a song in the Disney movie Moana and, of course, the movie Moana itself. The other day, I had a really interesting-- and frustrating-- thread about this movie. It started when I posted this:
One of my favorite things about "Moana" is that it's a buddies movie with a guy and a girl. Yes, believe it or not, a guy and a girl over the age of 12 can hang out and even be alone on a boat for several weeks without falling in love (despite the jokes that [friend's name here] and I make about it). All too many movies that have a woman as a main character either portray her as someone who is an "accessory" to the man or, if she's the absolute main character, she has to fall in love with a man because, vagina. It's almost always obligatory when a woman is an absolute main character. Maui and Moana become best friends. They hug, they high five (yeah yeah, that wasn't around thousands of years ago, but it's Disney; what do you want?), they act silly in a way that's non-flirtatious.And I don't know anything about ancient Polynesian cultures, but I have heard that aboriginal cultures in general were often more egalitarian than the Christian-dominated cultures that followed in the centuries to come. So why not?
One guy, I'll just call him "G", wrote this in response:
G: So, actually you say that desire and bodily needs are rooted in christianity?I highly doubt that...
Me: No that is absolutely not what I said.
G: You've praised a movie for the lack of lust in it and then wrote, abo [sic] cultures like Moana's were more egalitarian than Christian culture. That is what you said.But let's flip the story, why is it a bad thing that men and women have basic needs and those needs are being addressed? The Heroine also eats and goes to the toilet sometimes.
Well, for the love part, I tend to agree with you, she doesn't have to fall in love to fulfill her needs, but I guess I'd prefer this romantic way rather than just showing her random copulating with strangers.Well, for the love part, I tend to agree with you, she doesn't have to fall in love to fulfill her needs, but I guess I'd prefer this romantic way rather than just showing her random copulating with strangers.
Me: No you are missing the point. Movies with men as main characters have them sometimes falling in love, sometimes not. If the main character is a woman, she has to fall in love. In other words, it’s woman [sic] being defined in relation to men.
The egalitarian stuff I was talking about was in reference to that they went on an adventure together that a woman wouldn’t typically go on, at least not in Christian dominated cultures over the past several centuries
The egalitarian stuff I was talking about was in reference to that they went on an adventure together that a woman wouldn’t typically go on, at least not in Christian dominated cultures over the past several centuries
What is frustrating is how often I have had this type of conversation with people and how often they misunderstand it. It's been going on since childhood. I thought my opening post was clear, but as you can see I had to clarify it. And the very idea that a movie not involving a man needing to get laid or a woman needing a man to love her (sadly, the formula for many romance movies is just that) is a good thing seems to be alien to so many people. I might as well be saying, "Wow, finally, a movie where somebody doesn't breath oxygen!"
There are a lot of things that I appreciate about Moana, and the fact that they didn't chuck in a love story is one of them, for the reasons I stated above. I am sure the only reasons that the writers didn't put in a love story are:
a) because it was irrelevant to the plot and
b) because in today's world of Internet predators the idea of a 16-year-old falling in love with an ageless man (who is presented as if he is in his mid-twenties, perhaps) would just be inappropriate (although maybe there was a little bit of a feminist consciousness when the story was written).
But let's look at it for a moment as if this were a real scenario. Why isn't Moana falling in love with Maui? I mean, they have been alone together on that boat for weeks! Surely some primal instinct would take over, right? Why didn't she fall in love? I don't know. Maybe she's gay. Maybe she's asexual. Maybe her sexuality hasn't awoken yet.
Or maybe Moana IS heterosexual and, gasp, there was just no sexual tension between her and Maui, and why is really not important.Yes, believe it or not, this is possible. I'm heterosexual but I have a lot of friends who are guys and the sexual tension between us is zero. We might high-five or hug (depending on the person and my relationship with them) but that's as far as it will go or ever will go, even if in the snowball's chance in hell that we end up stranded on a boat together for several weeks. This may be because I'm demisexual (Google it) but I think there are a lot of heterosexual opposite-sex friends who don't encounter sexual tension when they spend time together. I remember being frustrated as a kid when my mom would say that in every interaction between heterosexual people of the opposite sex, there is always going to be some level of sexual tension. No. That's not true. For some people, yes, it absolutely is true. Some guys see an attractive woman and their mind doesn't even register it. Others immediately think, "Oh she's attractive." Others still within a nanosecond of seeing an attractive woman think, "I want to fuck her." And this is just the cisgender man side. Cisgender women? Same deal. What about gay cisgender men and gay cisgender women? Probably even more complicated when we are talking about transgender and gender non-binary people.
I guess what frustrates me the most is when I praise Moana and other movies for having guys and girls being close, non-sexual friends, other people are hearing me say that sex is bad. Or they think I have a personal sexual problem. But what I really am praising is the visibility of other types of relationships, that sex isn't the be-all-and-end-all of human interaction. I'm praising the visibility of someone who might be gay. Or asexual. Or not sure yet. Or just praising the idea that heterosexual people can spend time alone without wanting to do each other. Is it really that complicated?
While I do think the whole idea of women being defined in relation to men is still a pervasive problem in film, I also think it is happening less and less. Moana is one film that is finally breaking that mold. Moreover, I think in terms of film characters she is a good role model for young girls. She is strong and determined and independent. And as for Maui? Yeah, he teaches Moana wayfinding, but he also learns a few things from Moana. How often do you see men learning from women in movies?
Sunday, September 17, 2017
Updates
Jeez, it's been a while since I've posted, and when I wrote my last post I was in a very dark place and feeling utterly hopeless.
I'm happy to say that things have gotten better: At the end of May, I got a full-time job at an autism-friendly workplace in which I can use my drawing and writing talents. Despite my lack of professional experience in this area, my boss hired me based on raw talent, knowing that my lack of professional experience was likely Asperger's-related and not due to laziness and other factors people are often too quick to assume.
Ironically, I found this job through the school in which I had been taking the web development class. I haven't touched coding since I've gotten the job, however. After all, at long last I have a job doing work based on where my talents actually lie-- writing and drawing-- than in the "practical" areas that society says I ought to have.
While I enjoyed the environment at the school where I took the web development class, the learning process caused me a lot of stress and anxiety; it has since been confirmed that I have nonverbal learning disability, which I think might account for the difficulties I had in learning the material. While I might pick it up coding again eventually, right now I'm glad to be able to focus on my art and writing. I've been going to open drawing sessions, I've taken watercolor painting classes, and in November I'll be going to a one-day writing workshop.
I'm not completely financially independent-- the company I work for is a startup and does not currently offer medical benefits. My insurance is $234 a month (I opted for this more expensive insurance because of a procedure I have to have in a couple days, which will be explained below), and my parents foot the bill for that and help a little bit with the rent. And whenever I take a class, they pay for it. But it's still a far cry from where I was before, 100% dependent on them and feeling completely hopeless about the future.
Another update: In May I learned about something that initially scared me but have since learned is manageable: I have a cerebral aneurysm in my left internal carotid artery. It is 3-4mm in diameter, which is considered small. Since my blood pressure is excellent and because I don't smoke, it is currently not life-threatening. However, this could change as I get older. My neurosurgeon offered (rather than actively recommending, as all surgery comes with some risk) to treat it. I decided to go ahead with it because while right now the chance of eruption is next to zero, in twenty years we're talking about numbers like 10%-- a bit of a game of Russian Roulette. Right now, with the minimal risk, I was also glad to find out that I could even continue exercising-- running, lifting weights, swimming laps-- so long as I didn't do something extreme like run a marathon. Since I was given the green light for exercising, and since summer is my favorite season, I decided to go in for surgery at the end of the summer-- this Wednesday, September 20th, at Massachusetts General Hospital.
So what will they do? Shave my head, drill into my skull, and clip the aneurysm? No. Clipping is a process that is usually done on aneurysms on the surface of the brain. Mine is in my left internal carotid artery, and drilling into my head to access the aneurysm would be pretty risky. The surgeons are going to do a different procedure, one that is often employed for people with aneurysms that are deeper inside the head. They're going to insert a catheter in my femoral artery at the groin, run the catheter all the way up to my head, and deposit some coils inside the aneurysm sac. Since it's a wide-necked aneurysm, they will also put a stent inside the artery to hold the coils in place. The coils induce blood clotting and ultimately seal off the aneurysm opening to prevent blood from getting in. And I get to leave the hospital the next day. Pretty low-key surgery for what is technically brain surgery (sort of; the aneurysm isn't IN my brain, just near it).
Then, my parents will drive me to Pennsylvania, where I grew up and where they continue to live, so I can recover. I'm really excited because some friends that I went to film school with in New York City and who now live in Los Angeles are, ironically, moving to my hometown in Pennsylvania. They are there right now looking for a house, so I'll get to see them while they're there. They're probably going to be moved by Christmas, and they might start coming to my family's Thanksgiving and Christmas gatherings every year. So I'm pretty stoked about that.
However, the reptilian part of my brain is worried about complications during the surgery-- such as the catheter popping the aneurysm-- and I'm a bit nervous about going under general anesthesia because I don't know what it feels like. The idea of having control taken away from me-- "Here, we're going to stick a needle in your arm and you're going to go into medically-induced coma and there's nothing you can do about it"-- freaks me out. But the logical part of my brain thinks that the surgery will be uneventful, and recovery will be a snap. When I had an angiogram (which involves injecting dye through a catheter inserted into the groin, going all the way up to the head), the doctors gave me a sedative that had practically no effect on me. They said that even for a young person, I was unusually awake and alert during the procedure. They explained that it means my liver processes drugs very efficiently. So my guess is I won't be one of those people who is super fatigued after surgery.
Well, that's it for today's post. Sorry it's been so long, but as you can see it's been a hectic year!
I'm happy to say that things have gotten better: At the end of May, I got a full-time job at an autism-friendly workplace in which I can use my drawing and writing talents. Despite my lack of professional experience in this area, my boss hired me based on raw talent, knowing that my lack of professional experience was likely Asperger's-related and not due to laziness and other factors people are often too quick to assume.
Ironically, I found this job through the school in which I had been taking the web development class. I haven't touched coding since I've gotten the job, however. After all, at long last I have a job doing work based on where my talents actually lie-- writing and drawing-- than in the "practical" areas that society says I ought to have.
While I enjoyed the environment at the school where I took the web development class, the learning process caused me a lot of stress and anxiety; it has since been confirmed that I have nonverbal learning disability, which I think might account for the difficulties I had in learning the material. While I might pick it up coding again eventually, right now I'm glad to be able to focus on my art and writing. I've been going to open drawing sessions, I've taken watercolor painting classes, and in November I'll be going to a one-day writing workshop.
I'm not completely financially independent-- the company I work for is a startup and does not currently offer medical benefits. My insurance is $234 a month (I opted for this more expensive insurance because of a procedure I have to have in a couple days, which will be explained below), and my parents foot the bill for that and help a little bit with the rent. And whenever I take a class, they pay for it. But it's still a far cry from where I was before, 100% dependent on them and feeling completely hopeless about the future.
Another update: In May I learned about something that initially scared me but have since learned is manageable: I have a cerebral aneurysm in my left internal carotid artery. It is 3-4mm in diameter, which is considered small. Since my blood pressure is excellent and because I don't smoke, it is currently not life-threatening. However, this could change as I get older. My neurosurgeon offered (rather than actively recommending, as all surgery comes with some risk) to treat it. I decided to go ahead with it because while right now the chance of eruption is next to zero, in twenty years we're talking about numbers like 10%-- a bit of a game of Russian Roulette. Right now, with the minimal risk, I was also glad to find out that I could even continue exercising-- running, lifting weights, swimming laps-- so long as I didn't do something extreme like run a marathon. Since I was given the green light for exercising, and since summer is my favorite season, I decided to go in for surgery at the end of the summer-- this Wednesday, September 20th, at Massachusetts General Hospital.
So what will they do? Shave my head, drill into my skull, and clip the aneurysm? No. Clipping is a process that is usually done on aneurysms on the surface of the brain. Mine is in my left internal carotid artery, and drilling into my head to access the aneurysm would be pretty risky. The surgeons are going to do a different procedure, one that is often employed for people with aneurysms that are deeper inside the head. They're going to insert a catheter in my femoral artery at the groin, run the catheter all the way up to my head, and deposit some coils inside the aneurysm sac. Since it's a wide-necked aneurysm, they will also put a stent inside the artery to hold the coils in place. The coils induce blood clotting and ultimately seal off the aneurysm opening to prevent blood from getting in. And I get to leave the hospital the next day. Pretty low-key surgery for what is technically brain surgery (sort of; the aneurysm isn't IN my brain, just near it).
Then, my parents will drive me to Pennsylvania, where I grew up and where they continue to live, so I can recover. I'm really excited because some friends that I went to film school with in New York City and who now live in Los Angeles are, ironically, moving to my hometown in Pennsylvania. They are there right now looking for a house, so I'll get to see them while they're there. They're probably going to be moved by Christmas, and they might start coming to my family's Thanksgiving and Christmas gatherings every year. So I'm pretty stoked about that.
However, the reptilian part of my brain is worried about complications during the surgery-- such as the catheter popping the aneurysm-- and I'm a bit nervous about going under general anesthesia because I don't know what it feels like. The idea of having control taken away from me-- "Here, we're going to stick a needle in your arm and you're going to go into medically-induced coma and there's nothing you can do about it"-- freaks me out. But the logical part of my brain thinks that the surgery will be uneventful, and recovery will be a snap. When I had an angiogram (which involves injecting dye through a catheter inserted into the groin, going all the way up to the head), the doctors gave me a sedative that had practically no effect on me. They said that even for a young person, I was unusually awake and alert during the procedure. They explained that it means my liver processes drugs very efficiently. So my guess is I won't be one of those people who is super fatigued after surgery.
Well, that's it for today's post. Sorry it's been so long, but as you can see it's been a hectic year!
Saturday, January 28, 2017
Angry
I'm angry at so many things right now.
I'm angry that I was born in 1980 instead of 20 years later. This meant growing up in an age of profound ignorance, when there was no word for Asperger's. Instead, I was that problem kid with the mysterious behaviors, someone who my parents and teachers concluded had psychological problems.
I'm angry that my parents didn't know just how aware I was that they thought there was something psychologically wrong with me.
I'm angry that I was expected to change, and that I was conditioned by pretty much everybody to believe that when I got bullied, it was because I brought it upon myself, that others were just "responding" to me.
I'm angry about the cliche that those who bully others are going to grow up flipping hamburgers. No. It's absolutely not true. I know for a fact that a number of the people who bullied me have successful careers. Me? I'm stuck trying to get an entry level job. It's like I've been 22 for the past 14 years.
I'm angry that by the time I went to college, there was still no word for Asperger's-- and instead of getting bullied by other students, I was bullied by teachers, which had rarely happened to me before.
I'm angry that my parents, my mom especially, were so fucking blind to the reality when I told them what was going on in college, that they thought that I was exaggerating.
I'm angry that my teachers in college gave me no tools for going out in the real world with what skills I had; they just told me to give up. One in particular took delight in seeing me fail and suffer.
I'm angry that I had a crush on one of those abusive teachers. What does that mean about me? Am I attracted to abusive people?
I'm angry at how many things about me that are well-understood by psychologists today were shamed by others during my childhood and early adulthood: my obsessions with movies, the fact that I couldn't handle myself when I got a crush on someone, the fact that I RARELY got a crush on anybody, my sense of humor, my slightly-skewed gender identity, etc.
I'm angry that all of this stuff is connected-- that I'm 36 years old and still paying the price for who I am. I still don't have a job. Who the fuck would hire somebody with a patchwork resume of dead-end jobs and multiple degrees that went nowhere?
And because of this, I'm angry when people ask me, "What do you do for work?" For me, it's like one of those "When did you stop beating your wife?" questions. So many loaded assumptions: I'm 36, white, and from a middle-class background, so OF COURSE I must have a career!
I'm angry that I have more skeletons in my closet than a fucking graveyard. I'm angry that my story is so unbelievable that it's the equivalent of airing my dirty laundry in public. I'm angry that on occasion when I DO tell my story, they think I've reached the fundamental point within ten seconds, but the reality is that I've just begun telling it, that it's that long, that convoluted, and contains multiple traumas.
I'm angry that everybody else on the spectrum I've met doesn't have a story even remotely similar to mine:
They're either people with penises who A) Fit the autism stereotype of computer genius and have a successful career, or B) Are so fucking naive and clueless that they don't know what their reality is;
They're people WITHOUT penises who haven't been through the hell I've been through because they were naturally quieter than me. They were able to slip under the radar of "concern".
I'm angry that even within the psychiatric community, there still seems to be this profound misunderstanding that if you have Asperger's you're likely a computer genius and super literal. And you have a penis.
I'm angry that the only services for adults on the spectrum are for people who are so fucking clueless that they need it explained to them that they shouldn't, for example, talk about their masturbation habits at work, because it will make people uncomfortable and get them fired. There are no services for people who have bizarre, complicated problems like mine.
I'm angry that when I tell people I don't understand something, people ask, "What don't you understand?" They see it through a neurotypical perspective no matter how many different ways I try to explain it to them: When I say "I don't understand something", it means I don't fucking understand it! PERIOD! When I was a kid, this was pretty much any movie more complicated than Home Alone. This wasn't me saying, "I don't understand why that guy committed suicide at the end." It was, "I don't understand what the movie is about, what's going on, ANYTHING." As an adult, it's when I'm trying to learn programming. Telling me to "Walk away and come back an hour later" is not going to help WHEN I DON'T FUCKING UNDERSTAND THE MATERIAL! I try to explain this to people, and either I'm explaining it poorly, or they just can't see it! Well, let me give you a metaphor: Go out on a PITCH BLACK NIGHT and say, "I can't see anything." Well, how will you answer it when I ask you, "What don't you see?" Yes, this is what I mean when I say, "I DON'T UNDERSTAND!"
I'm angry that I have to ask my parents for money all the time "until I get a job". With each passing day, I continue to lose hope that this will happen. I wake up in my tiny, paint-chipped apartment and think "So this is my life."
And I'm angry and how much strain I'm putting on my parents financially and perhaps emotionally. Who the hell signs up for this sort of thing when they have kids?
I'm angry that I was born in 1980 instead of 20 years later. This meant growing up in an age of profound ignorance, when there was no word for Asperger's. Instead, I was that problem kid with the mysterious behaviors, someone who my parents and teachers concluded had psychological problems.
I'm angry that my parents didn't know just how aware I was that they thought there was something psychologically wrong with me.
I'm angry that I was expected to change, and that I was conditioned by pretty much everybody to believe that when I got bullied, it was because I brought it upon myself, that others were just "responding" to me.
I'm angry about the cliche that those who bully others are going to grow up flipping hamburgers. No. It's absolutely not true. I know for a fact that a number of the people who bullied me have successful careers. Me? I'm stuck trying to get an entry level job. It's like I've been 22 for the past 14 years.
I'm angry that by the time I went to college, there was still no word for Asperger's-- and instead of getting bullied by other students, I was bullied by teachers, which had rarely happened to me before.
I'm angry that my parents, my mom especially, were so fucking blind to the reality when I told them what was going on in college, that they thought that I was exaggerating.
I'm angry that my teachers in college gave me no tools for going out in the real world with what skills I had; they just told me to give up. One in particular took delight in seeing me fail and suffer.
I'm angry that I had a crush on one of those abusive teachers. What does that mean about me? Am I attracted to abusive people?
I'm angry at how many things about me that are well-understood by psychologists today were shamed by others during my childhood and early adulthood: my obsessions with movies, the fact that I couldn't handle myself when I got a crush on someone, the fact that I RARELY got a crush on anybody, my sense of humor, my slightly-skewed gender identity, etc.
I'm angry that all of this stuff is connected-- that I'm 36 years old and still paying the price for who I am. I still don't have a job. Who the fuck would hire somebody with a patchwork resume of dead-end jobs and multiple degrees that went nowhere?
And because of this, I'm angry when people ask me, "What do you do for work?" For me, it's like one of those "When did you stop beating your wife?" questions. So many loaded assumptions: I'm 36, white, and from a middle-class background, so OF COURSE I must have a career!
I'm angry that I have more skeletons in my closet than a fucking graveyard. I'm angry that my story is so unbelievable that it's the equivalent of airing my dirty laundry in public. I'm angry that on occasion when I DO tell my story, they think I've reached the fundamental point within ten seconds, but the reality is that I've just begun telling it, that it's that long, that convoluted, and contains multiple traumas.
I'm angry that everybody else on the spectrum I've met doesn't have a story even remotely similar to mine:
They're either people with penises who A) Fit the autism stereotype of computer genius and have a successful career, or B) Are so fucking naive and clueless that they don't know what their reality is;
They're people WITHOUT penises who haven't been through the hell I've been through because they were naturally quieter than me. They were able to slip under the radar of "concern".
I'm angry that even within the psychiatric community, there still seems to be this profound misunderstanding that if you have Asperger's you're likely a computer genius and super literal. And you have a penis.
I'm angry that the only services for adults on the spectrum are for people who are so fucking clueless that they need it explained to them that they shouldn't, for example, talk about their masturbation habits at work, because it will make people uncomfortable and get them fired. There are no services for people who have bizarre, complicated problems like mine.
I'm angry that when I tell people I don't understand something, people ask, "What don't you understand?" They see it through a neurotypical perspective no matter how many different ways I try to explain it to them: When I say "I don't understand something", it means I don't fucking understand it! PERIOD! When I was a kid, this was pretty much any movie more complicated than Home Alone. This wasn't me saying, "I don't understand why that guy committed suicide at the end." It was, "I don't understand what the movie is about, what's going on, ANYTHING." As an adult, it's when I'm trying to learn programming. Telling me to "Walk away and come back an hour later" is not going to help WHEN I DON'T FUCKING UNDERSTAND THE MATERIAL! I try to explain this to people, and either I'm explaining it poorly, or they just can't see it! Well, let me give you a metaphor: Go out on a PITCH BLACK NIGHT and say, "I can't see anything." Well, how will you answer it when I ask you, "What don't you see?" Yes, this is what I mean when I say, "I DON'T UNDERSTAND!"
I'm angry that I have to ask my parents for money all the time "until I get a job". With each passing day, I continue to lose hope that this will happen. I wake up in my tiny, paint-chipped apartment and think "So this is my life."
And I'm angry and how much strain I'm putting on my parents financially and perhaps emotionally. Who the hell signs up for this sort of thing when they have kids?
Sunday, November 13, 2016
That Moment When Your Perception of Reality is Turned Upside Down
A few weeks ago I was at my shrink and talking about how frustrated I was about certain things related to Asperger's, and a strong suspicion that I have a non-verbal learning disability. In fact, I thought the two were intrinsically linked.
My shrink told me that they weren't, and that I haven't even been diagnosed with Asperger's, and--
Wait, WHAT?
I told him that I sure as hell wasn't neurotypical, and that I was diagnosed anyway back in 2003.
He shook his head, and said something like, "A therapist saying that he agrees with your assessment is not a diagnosis. You need neuropsychiatric testing for that. I'm just floored that you never had that done."
"Yeah, well, nobody knew anything back then. In 2003, they gave me an MRI and an EEG. That was it. There was nothing else they could do."
He said that even though people didn't know what Asperger's was until very recently, neuropsychiatric testing has been around since the '80s. That's right, the 1980s! And not one person suggested I have it done, unless you count the psychological evaluation I had at age 8 at my school (but I don't think that qualifies). So this means that my boneheaded shrink that I went to from 1992-1995 didn't know to refer me for it; my very good shrink from 1998-1999 didn't know to refer me for it; and none of the other shrinks I've had-- bad and good-- suggested I have it done. Nobody! Not in suburban Pennsylvania, and not even in New York City!
My therapist does believe I'm on the autism spectrum, but I need neuropsychiatric testing to get an official diagnosis. And this would also screen for the NVLD I've been suspicious of for the past year; I've been suspicious because I've been taking web development classes and I'm always the last to pick up everything. Sometimes instructors and peers think it's a lack of attention to detail (ha! People, if anything, tell me I'm too hung up on details!) or that I'm distracted or whatever, but... there's something else going on. I can't even explain it. And when I've described to my shrink about what it's like for me to learn new non-verbal material, and how I do much better one-on-one, he said that what I've described is very typical of people with NVLD.
Yeah, so I have to look into getting DIAGNOSED after 13 YEARS of being sure that I've had Asperger's. If I don't have it, I don't know what it means. This really would warp reality as I know it.
My shrink told me that they weren't, and that I haven't even been diagnosed with Asperger's, and--
Wait, WHAT?
I told him that I sure as hell wasn't neurotypical, and that I was diagnosed anyway back in 2003.
He shook his head, and said something like, "A therapist saying that he agrees with your assessment is not a diagnosis. You need neuropsychiatric testing for that. I'm just floored that you never had that done."
"Yeah, well, nobody knew anything back then. In 2003, they gave me an MRI and an EEG. That was it. There was nothing else they could do."
He said that even though people didn't know what Asperger's was until very recently, neuropsychiatric testing has been around since the '80s. That's right, the 1980s! And not one person suggested I have it done, unless you count the psychological evaluation I had at age 8 at my school (but I don't think that qualifies). So this means that my boneheaded shrink that I went to from 1992-1995 didn't know to refer me for it; my very good shrink from 1998-1999 didn't know to refer me for it; and none of the other shrinks I've had-- bad and good-- suggested I have it done. Nobody! Not in suburban Pennsylvania, and not even in New York City!
My therapist does believe I'm on the autism spectrum, but I need neuropsychiatric testing to get an official diagnosis. And this would also screen for the NVLD I've been suspicious of for the past year; I've been suspicious because I've been taking web development classes and I'm always the last to pick up everything. Sometimes instructors and peers think it's a lack of attention to detail (ha! People, if anything, tell me I'm too hung up on details!) or that I'm distracted or whatever, but... there's something else going on. I can't even explain it. And when I've described to my shrink about what it's like for me to learn new non-verbal material, and how I do much better one-on-one, he said that what I've described is very typical of people with NVLD.
Yeah, so I have to look into getting DIAGNOSED after 13 YEARS of being sure that I've had Asperger's. If I don't have it, I don't know what it means. This really would warp reality as I know it.
Sunday, October 2, 2016
One Quick Thing...
Lots of people I know tell me all the time not to compare myself to others. It's well-meaning, and I get it. But consider this:
It's so easy for them to say that when they haven't spent their life left behind socially and, in some cases, academically (non-verbal material is what I'm talking about here). The fact is, life doesn't exist in a vacuum. You have to compete in the real world, which expects a neurotypical, non-disabled brain model. If you don't have that model, you have go through years of anguish until you do have it. And if that doesn't work, you have to pretend to have it and hope that nobody discovers the truth. And if you can't do either, you're fucked, socially and financially.
So it's so easy to tell people not to compare themselves to others when they haven't spent their entire lives struggling to just be normal.
Check your privilege.
It's so easy for them to say that when they haven't spent their life left behind socially and, in some cases, academically (non-verbal material is what I'm talking about here). The fact is, life doesn't exist in a vacuum. You have to compete in the real world, which expects a neurotypical, non-disabled brain model. If you don't have that model, you have go through years of anguish until you do have it. And if that doesn't work, you have to pretend to have it and hope that nobody discovers the truth. And if you can't do either, you're fucked, socially and financially.
So it's so easy to tell people not to compare themselves to others when they haven't spent their entire lives struggling to just be normal.
Check your privilege.
Wednesday, August 10, 2016
Regrets... or Not?
In the summer of 1991, when I was 10, my then-13-year-old brother went to Camp Negev, a secular Jewish overnight camp. My mother asked me if I would like to go for a special two-week session offered to the youngest kids, and I declined. No, I was not going to go. That would mean interrupting my third summer at Art Camp (not its real name; for simplicity I will just call it that), an artistic enrichment program held for six weeks each summer at a small Quaker school.
Wood shop was my favorite class at Art Camp, and 1991 was the summer in which I started an annual tradition of creating and implementing an ambitious woodworking project. Most other kids just copied the projects that were on the display shelves, but I drew elaborate plans on graph paper from scratch. The counselors (most of whom were actually teachers from the school) always encouraged my projects, never once telling me, "You can't do that; it's too hard."
The summer of 1994 was my sixth and final summer at Art Camp. As I was entering 8th grade and just a few months away from my fourteenth birthday, it was the last year I was young enough to go to this camp as a camper. I decided then that I was going to do the most ambitious project of them all-- a model Pitcairn autogyro. Through lots of bumps and hurdles, I made the airplane over the course of the summer. I was very proud, and was glad that my final year at Art Camp had ended on such a high note.
However, I was very sad that I was too old for Art Camp and that I had to move on. I would miss wood shop-- and the variety of other projects I got to do at camp. In true Asperger's fashion, I approached each project in each class (except dance-- I'm a total klutz with anything that involves full-body coordination) with a single-minded focus. If I made any friends, great. If not, I didn't care. In fact, it rarely crossed my mind to try to make friends. I occasionally befriended a couple other kids, but first and foremost I was at camp to work.
The reason I finally decided to go to Camp Negev in 1995 was simply this: I had to have something to do in the summer, and I knew that my brother had loved the camp in the three years he went. At least in going there I would have some point of reference in terms someone I knew having loved it. The only other alternative, it seemed, was to spend the summer killing time with flaky people I weren't even sure were my friends. My biggest fear about camp was that the kids would be just like the kids at school: I was sure that the girls in particular would giggle to each other, and then when I'd ask what was funny, they'd giggle again and say, "Nothing"; I was sure the girls would put makeup in the morning and constantly complain about how fat they were even if they were skinnier than Gandhi on a hunger strike; I was sure I would be bullied (although I didn't call it that back then, because I was convinced I deserved all the abuse I had received), and just as badly as I was in school.
None of these things happened-- like Art Camp, the camp philosophy emphasizes individuality-- but the beginning was rough because the aforementioned scenarios were all I had known. It wasn't until a counselor, Jonas, reached out to me and became my friend and mentor (for the next six years, no less) that I was able to be happy and comfortable at my new camp. I realize that if not for his intervention, I probably would not have returned the following summer. I not only did return the following summer (and also went on the post-11th grade Israel trip and came back for the post-12th-grade CIT program), but I also felt extreme regret that I had waited so long to go to give Camp Negev a try. I eventually became jealous of the other kids who had been coming since 1991; kids whose faces showed up in group photos; kids who would say, "Remember in '92 when this happened? Or in '94 when we did that?" and I was not be able to share these memories and laughs with them.
In fact, what I had really regretted about not coming to Camp Negev when I first was offered the opportunity was why: I was in love with the projects at Art Camp. It had nothing to do with the people; as I have said, friends hadn't been my priority there, but instead everything to do with the intense projects that I tackled there. I felt silly for that. After all, I realized, when people come back to any camp year after year, it's because of the bonds they formed with other kids, not because of things they got to make. At one point I began to wonder what was wrong with me that this fundamental point had never been obvious to me. For several years, I truly regretted the decision I had made to miss Camp Negev in 1991… and 1992, and 1993, and 1994.
But today? I don't regret my decision. Not in the slightest. I am still a bit envious of my campmates who had gone there since 1991, but I realize that doing so would have been a huge mistake on my part. I grew up in an era where this "weird thing" about me didn't have a word. Jonas hadn't started working at Camp Negev that summer (like me, 1995 was his first year) and thus wouldn't have been able to provide the crucial intervention I needed to help me feel comfortable socially and emotionally. And without the accommodations that would be made for today's campers, I realize how fantastically lucky I was to have a counselor like Jonas at all. I fear that had I gone in 1991, I would have had the same prejudices and fears as in 1995, but nobody would have been able to help me. I would have hated camp and never come back.
With 20/20 hindsight, I understand of course that my single-minded focus on projects instead of people was a blatant manifestation of Asperger's Syndrome. I don't regret this single-minded focus, and I do regret that I don't have it nearly as much as I used to-- I got more done in those days. When I scoffed at my younger self for having been this way, I was, of course, accepting societal norms about what is supposed to be important to people, and what summer camp is supposed to be. I have absolutely no regrets for going to Art Camp until 1994; I simply wasn't emotionally or psychologically ready for overnight camp, and even when I was, Jonas was a huge piece in this social awakening that I finally experienced. I am glad that I got to make my Pitcairn Autogyro in 1994, and it still is one of my fondest memories. Camp Negev may have been important for my social development, but Art Camp was important for developing my artistic skills and visual-spatial-reasoning skills, all of which mattered to me deeply.
I have wondered, however: what if I were growing up today in an era in which there is better education for camp counselors who might have to look after young kids with Asperger's? It would have been safer to send me to Camp Negev, and most likely I would have gone, and likely have come back year after year. But then because of these "interventions", I wouldn't have had the opportunity to make something like my Pitcairn Autogyro (unless, of course, my parents had found an overnight arts camp for me, which is definitely possible). I would have responded to the "interventions" and made sure to spend more time with people than I did. And would it been at the expense of the personal projects I was so passionate about? I don't know. But this is often a question that plagues me: At what cost is intervention for kids on the autism spectrum? This cost-benefit analysis is something I have wondered about for a few years now. I don't have the answer.
The reason I finally decided to go to Camp Negev in 1995 was simply this: I had to have something to do in the summer, and I knew that my brother had loved the camp in the three years he went. At least in going there I would have some point of reference in terms someone I knew having loved it. The only other alternative, it seemed, was to spend the summer killing time with flaky people I weren't even sure were my friends. My biggest fear about camp was that the kids would be just like the kids at school: I was sure that the girls in particular would giggle to each other, and then when I'd ask what was funny, they'd giggle again and say, "Nothing"; I was sure the girls would put makeup in the morning and constantly complain about how fat they were even if they were skinnier than Gandhi on a hunger strike; I was sure I would be bullied (although I didn't call it that back then, because I was convinced I deserved all the abuse I had received), and just as badly as I was in school.
None of these things happened-- like Art Camp, the camp philosophy emphasizes individuality-- but the beginning was rough because the aforementioned scenarios were all I had known. It wasn't until a counselor, Jonas, reached out to me and became my friend and mentor (for the next six years, no less) that I was able to be happy and comfortable at my new camp. I realize that if not for his intervention, I probably would not have returned the following summer. I not only did return the following summer (and also went on the post-11th grade Israel trip and came back for the post-12th-grade CIT program), but I also felt extreme regret that I had waited so long to go to give Camp Negev a try. I eventually became jealous of the other kids who had been coming since 1991; kids whose faces showed up in group photos; kids who would say, "Remember in '92 when this happened? Or in '94 when we did that?" and I was not be able to share these memories and laughs with them.
In fact, what I had really regretted about not coming to Camp Negev when I first was offered the opportunity was why: I was in love with the projects at Art Camp. It had nothing to do with the people; as I have said, friends hadn't been my priority there, but instead everything to do with the intense projects that I tackled there. I felt silly for that. After all, I realized, when people come back to any camp year after year, it's because of the bonds they formed with other kids, not because of things they got to make. At one point I began to wonder what was wrong with me that this fundamental point had never been obvious to me. For several years, I truly regretted the decision I had made to miss Camp Negev in 1991… and 1992, and 1993, and 1994.
But today? I don't regret my decision. Not in the slightest. I am still a bit envious of my campmates who had gone there since 1991, but I realize that doing so would have been a huge mistake on my part. I grew up in an era where this "weird thing" about me didn't have a word. Jonas hadn't started working at Camp Negev that summer (like me, 1995 was his first year) and thus wouldn't have been able to provide the crucial intervention I needed to help me feel comfortable socially and emotionally. And without the accommodations that would be made for today's campers, I realize how fantastically lucky I was to have a counselor like Jonas at all. I fear that had I gone in 1991, I would have had the same prejudices and fears as in 1995, but nobody would have been able to help me. I would have hated camp and never come back.
With 20/20 hindsight, I understand of course that my single-minded focus on projects instead of people was a blatant manifestation of Asperger's Syndrome. I don't regret this single-minded focus, and I do regret that I don't have it nearly as much as I used to-- I got more done in those days. When I scoffed at my younger self for having been this way, I was, of course, accepting societal norms about what is supposed to be important to people, and what summer camp is supposed to be. I have absolutely no regrets for going to Art Camp until 1994; I simply wasn't emotionally or psychologically ready for overnight camp, and even when I was, Jonas was a huge piece in this social awakening that I finally experienced. I am glad that I got to make my Pitcairn Autogyro in 1994, and it still is one of my fondest memories. Camp Negev may have been important for my social development, but Art Camp was important for developing my artistic skills and visual-spatial-reasoning skills, all of which mattered to me deeply.
I have wondered, however: what if I were growing up today in an era in which there is better education for camp counselors who might have to look after young kids with Asperger's? It would have been safer to send me to Camp Negev, and most likely I would have gone, and likely have come back year after year. But then because of these "interventions", I wouldn't have had the opportunity to make something like my Pitcairn Autogyro (unless, of course, my parents had found an overnight arts camp for me, which is definitely possible). I would have responded to the "interventions" and made sure to spend more time with people than I did. And would it been at the expense of the personal projects I was so passionate about? I don't know. But this is often a question that plagues me: At what cost is intervention for kids on the autism spectrum? This cost-benefit analysis is something I have wondered about for a few years now. I don't have the answer.
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