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!

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?

Independent-Living Prospects

I am fed up with people asking me what I do for a living. 

It's one of those questions that begs the question. That is, people assume that because I am thirty-three I must have a career. But I don't have a career. It's just one of those aspects of life that is taken for granted. When people ask me what I do for a living, they are making a lot of unconscious assumptions: They see that I am a white, middle-class American. Most likely my life was uneventful. I finished high school, went to college, got a job that I have been working at for ten years or so and, possibly married with kids, am living happily ever after (fortunately I am living in an era when, and a city where, marriage and children isn't one of these assumptions). When they make these assumptions, they assume, too, that I am neurotypical, even if they have never heard of the word. These are some of the many assumptions that people make about every other human being on earth, and only recently have they been brought into question. 

People who know me and know my situation tell me to "think positive". It's easy for them to say, of course, since they are neurotypical people who are not stuck with the sometimes-torture chamber that is my brain. They haven't gone to school, constantly been between jobs-- dead-end jobs, that is-- realized that their degree was useless, gone back to school, gotten a Master's Degree, taken two jobs related to that degree and been fired from both of them because of issues related to interpersonal skills, and then realized that that they have yet another useless degree. They do not understand the turmoil I have had to live with practically from the dawn of my consciousness. And their suggestions to alleviate some of the problems related to living independently actually do not work for me. They take it for granted that these suggestions would work because they would work for most people. It doesn't even occur to them that there are some people for whom these suggestions would be harmful.

What suggestions are we talking about exactly? For example: 

1. Until you can get a permanent job (yes, like WHEN?), why not take a job in retail? At least it's some money!

No. I can't take a job in retail. I was just fired from two jobs that involved working with the public. I can only put a fake smile on my face and pretend to be interested in everybody's personal lives before the holes in my facade start to form. People can see right through that. Besides, it's too emotionally exhausting for me. This isn't a matter of "won't", but a matter of "can't", in the same way a person with an IQ of 75 can't do calculus. This is just not who I am, and I have tried it.

Just for the record, I do have a temporary work at home job. It does not pay well, however.

2. Get a roommate so that you can save money. It will also be less of a burden on your parents.

Yes, it's true. My parents are helping me to live in Boston, just as they helped me to live in New York City. My mother is retiring next year, so unless I find something within the coming year, I have to move back to Pennsylvania to live with my parents. In the meantime, I am downgrading from a one-bedroom to a studio apartment (fortunately in the same building) on August 31st. I sucked it up and got rid of a lot of books and some furniture so I can comfortably fit in this smaller unit. My one-bedroom is $1425 a month and is set to go up to $1500 this fall. The studio is $1200 a month. I actually did try getting a roommate. I met a fellow Aspie over the Internet. We hit it off immediately and started making arrangements to get a place together. But he and I got into an argument over something really stupid and realized it wouldn't work out. Before meeting him I met a few other potential roommates. None of them picked me. I am sure I would be difficult to live with. I have my own habits, my own way of doing things. This is very typical of people with Asperger's. Plus, when I was in college, nearly all my roommate situations ended in disaster. Even my parents agreed that they would rather sacrifice some extra money to help me rent a studio than hope that a roommate situation to which they wouldn't have to contribute financially would work out.

3. Move to a suburb. It's so much cheaper!

Yes, it is not only cheaper but also a lot less diverse and accepting. In places like New York and Boston, I feel comfortable and make friends with ease. It is hard to meet people as accepting and open-minded in a suburb, even in comparatively liberal suburbs such as the one in Pennsylvania where my parents live. Plus, think about this: If some employers in a city are uncomfortable with my personality, it would probably be much worse in a suburb. My job prospects would likely not be any better, despite the lack of competition. 

4. Why don't you try [insert job prospect here]?

I already have. I have been down so many paths that it is almost laughable when others make suggestions, thinking I actually haven't tried them. That's another assumption: People assuming that I don't have a career because there are avenues that I haven't thought to explore.

In short, I am beyond frustrated. I live in Massachusetts, a state that famously has the most resources in the U.S. for adults with Asperger's Syndrome, so that is making me hopeful that they can assist me with finding a job. I am, however, not optimistic. I like to think that my blog posts give people hope, but sometimes I have to be honest: Life with Asperger's often does not turn out the way it did for Temple Grandin, for example. Most people with Asperger's-- women especially-- struggle to make ends meet in adulthood. I've heard of brilliant people working as janitors or doing some work that doesn't reflect their intelligence because they can't get through a job interview. Or they get through the interview and can't hold the job because of conflicts with coworkers and their bosses. Right now I feel that my only hope is to get my writing published (I have already finished a book that I am shopping around and am currently working on another). But even most best-selling authors have to have day jobs to make ends meet.

To those of you who brandish big smiles while telling me to "think positive", please walk around in my shoes for a day.