Friday, August 22, 2014

SEX! Now That I Have Your Attention, Read this Blog Post!

Thanks for coming! I'm gradually moving my blog to Substack! You can check out this post here!

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. 

Wednesday, August 6, 2014

Monday, July 28, 2014

On Writing: Just One of Those Moments You Can't Put Into Words

This post has nothing to do with Asperger's Syndrome. It's just a little thing about writing.

Ever have a moment in your life that is too abstract to translate into words? There is a moment from January or February of 2013 that keeps coming back to me, one of those moments that I just remember so clearly. Not just the moment, but the sensory aspects of it. What I was feeling, mentally and physically. But even describing that does not do justice to the abstract interpretation that was going on in my head. 

Background: I was in the process of losing weight, with the goal of reclaiming the long-lost thin, healthy body I had growing up, particularly the athletic, muscular, robust body that I had in high school when I was running track. I had battled a weight problem for eleven years, and in the fall of 2012 I hit upon a solution that worked for me. The biggest change that precipitated the weight loss was not figuring out the process itself, but rather getting in the right state of mind to fully implement that process. It was as if I suddenly flipped a switch in my head and was pursuing this goal with a single-minded focus. Don't ask me how it works; if I could bottle it and sell it I'd be rich (forgive the abuse of an old cliché here). 

What was the moment itself? It happened three or four months into my weight loss journey. I was exiting the Dodge YMCA in Brooklyn, still in the throes of an intense high that I had induced from yet another extreme workout, and feeling refreshed from the shower and sauna that followed. I was acutely aware of every sense that was activated. I have no idea if this was physiological, a side effect of the endorphins that I generated from exercise, or if it was entirely psychological.  I felt a little sore from the workout, a dull aching in my arm and leg muscles, but that was good because it meant I was making progress, slowly turning fat into muscle and strengthening my heart. I was warm from the shower and sauna, and the blast of cold air contrasted it in an interesting way. I hate the cold but for some reason I enjoyed the feeling of it on my face that day and welcomed the crisp smell. I was wearing a winter coat that I had bought when I was thirty pounds heavier, but at that moment I suddenly noticed how huge it was on me, hanging off of my now lean frame. I had a big, involuntary grin on my face. And on top of all this, I was plugged into my iPod, listening to the indie rock song "Hands of Hate" by transgender musician Ryan Cassata. Despite the title, the chorus sounds hopeful, not just in lyrics but in tune. It was when I was listening to the song's chorus that all the other senses I previously described where hitting me full force. It seems that the song was the factor that sealed the moment, if that makes sense.

I was extremely aware of these thoughts and sensations in the period of a few seconds, and yet they just took me several sentences to explain. I just told you what was going through my head and what I was feeling, but I am lost at how to show it to you. You would just have to get in my head, I suppose. But maybe I'll figure out a way to do it. That's one of the challenges of writing. And it's also a testament to how everyone has his or her own subjective experience and often cannot get anybody else to understand it in quite the same way. 

Sunday, July 13, 2014

They are Hurting

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

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

They are hurting.

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

They are hurting.

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

They are hurting.

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

They are hurting.

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

They are hurting.

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

They are hurting. 

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

They are hurting.

Children with Asperger's Syndrome are not crazy.

They are hurting.

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

Monday, June 16, 2014

Listen to What Your Kids are Trying to Tell You

I was listening to a podcast about transgender children. The mother of a MTF transgender child was on the show, and another person asked her if she and her husband had had difficulty accepting the reality of their child claiming that "he" was really a girl. The mother said that it was not terribly difficult for her and her husband because her father was dyslexic. What does one have to do with the other? Her father is in his seventies; he grew up in an era when dyslexia was unheard of. When he tried to explain that reading was tough for him, the teachers wouldn't have any of it. They told him that he was lazy and wasn't trying. He tried to tell the teachers what was going on in his head-- that letters and numbers were confusing for him-- but they dismissed his explanations as mere excuses. Transgender children face similar obstacles: a natal boy tries to tell "his" mother that "he" is actually a girl (or vice-versa). Many parents respond to this by telling the child that "he" is wrong and doesn't know what "he" is talking about. Drawing on the father's experiences with trying to explain what was going through his head when he had a hard time reading, these parents gave their child the benefit of the doubt that the woman's father never had. The transgender child's parents said, "Who are we to say what's going on in our child's brain?"

As you might guess, I draw a similar parallel to my experiences with Asperger's Syndrome. To navigate the social world growing up, I had to use my cognitive faculties to accomplish social tasks that most other people do intuitively. As you also might have guessed, many parents and teachers told me that I was not trying. I can recall many instances of, as a child, being at social gatherings with my parents and one (or both) of them pulling me aside and telling me, "You're acting inappropriate", "You're too loud", or something else to that effect. Oftentimes I had no idea what I was doing "wrong". After the social gatherings, my mother would often remark, "You were very immature." There were many times at these social gatherings when I would be reduced to tears, frustrated and unable to understand why people (not just my parents) were reacting to me the way they were. Most parents assume they can bring their kids to social gatherings without incident, but whether or not such a gathering would go over smoothly for me was a crapshoot. 

These memories continue to haunt me in very vivid dreams, and sometimes I even wake up screaming and crying. In these dreams, I am that ten-year-old kid again, insisting that I'm trying to be "good" only to hear my parents say, "Well, I don't see you trying." My attempts to explain what was going on in my head were dismissed, and that hurt like hell. Another mantra I had to deal with often started with the words, "If you would just... [insert action here]." Okay. Tell the transgender child, "If you would just learn to be a boy" or the dyslexic child, "If you would just learn to read." I assure you that these words can cut deep. It's the verbal equivalent of somebody slowly plunging a rusty knife into your side.

Parents, please listen to your kids. You may be thirty or so years older than them, but sometimes they not only know more than you think, but in some cases more than you.

Thursday, June 12, 2014

The Memory That Won't Let Go

It has become almost cliché to say that people with Asperger's Syndrome have a difficult time "letting things go." In fact, I've heard "Jeez, Julie, let it go!" more times than I prefer to count. I've been working on that over the years. I usually end up doing self-talk: "Okay, is this really worth obsessing about?" or "What are you going to accomplish by continuing to replay that incident in your head?" What works the best for me is engaging in vigorous exercise, like running or swimming. The activity is a distraction, and for some reason it helps me think things through more rationally. Maybe it's the endorphin release.

But there is one memory that I have a difficult time letting go of. Rather, it won't let go of me. In 1999, I moved to New York City from my hometown in Pennsylvania to go to art school to study animation. During my second year, I had an animation teacher, Doug (not his real name) who I ultimately developed a crush on. It was some bizarre perfect storm between a childish "hero worship" and, well, a crush. Eighteen years my senior (unusual for me-- I have never before or since then had a crush on someone that much older), he was an excellent teacher, and was intelligent and funny. I was aware that having a crush on him could ultimately lead to a frustrating obsession, and I was determined to handle this one well. I knew that Doug was married and (as far as I knew), monogamous. Besides, I didn't think for a second that he was interested in me. The first two months went well. Doug initially seemed nice, but by the middle of my third year, he was constantly snapping at me and even telling me that I was wasting his time and had no talent. 

I felt confused. Surely Doug didn't really mean these things, did he? And, hell, perhaps I should have been understanding that I was probably making him uncomfortable. The self-blame came from past experiences of inadvertently scaring off guys I had crushes on who figured out how obsessed with them I was. I accepted that what was happening was my fault, and if only I did better animation and behaved better, Doug would accept and like me. Everyone else seemed to like him, so I was certain I was the problem. Aside from that, I had already put so much energy into my crush that I could not-- no, would not-- see very clearly that Doug was just a nasty person. What I failed to acknowledge was that while the guys I had crushes on in the past sometimes snapped at me, they almost always apologized later and tried to be friendly. Doug didn't even try. In fact, his behavior towards me became nastier and nastier.

By the end of my fourth year, Doug was unpleasant and vicious to me on a regular basis. He never wasted a moment in favoring me with a scathing remark: in response to a conversation with someone else that didn't involve him, in class if my animation wasn't up to his standards, and even on the school's animation listserv. Every time I commented on something on the listserv, he would make a nasty, bitingly personal comment. Once he even said something like, "I hope certain people get hit by a crosstown bus." 

By the time I graduated, I was a wreck, and my self-esteem was destroyed (fortunately, I have since regained it, but that's another long story). This man whom I respected and adored hated me, and I couldn't accept it. Doug had even lied to try to keep me out of a class, saying that it was full when I knew damn well it wasn't. He was a remarkably good liar, able to make the most outrageous lies look like the truth and make the truth look like an outrageous lie. I ultimately got into the class, but only because I all but twisted his arm, so to speak. Deep down, I knew exactly what I was looking at: a vicious person. But I couldn't bring myself to acknowledge it. It was just easier for me to believe that I was the problem. Sometimes believing in nonsense is easier than accepting the reality, swallowing the red pill.

If there was something that should have brought me to my senses, it was Doug's arrest in fall 2004, about a year and a half after I graduated. Yes, that's right. Doug was arrested. He was caught in an undercover FBI sex sting for trying to solicit sex online from someone he believed to be a thirteen-year-old girl. My immediate reaction-- and the one I should have stuck with-- was, "I hate him." But, again, I couldn't swallow the red pill. I tried but then puked it up. I felt bad for Doug, making myself think things like, "Oh, he's just complicated" and, "Oh, he just has a problem and needs help." So what did I do? I wrote him a letter. It said something to the effect of that I was sorry about what happened and that we all make mistakes. 

For another year and a half, I continued to trumpet my support for Doug and that what he really needed was help, not prison (he ended up being incarcerated for 4 1/2 years). In the summer of 2006, however, I reached an epiphany (another long story). I finally acknowledged that Doug was a horrible person, and that he was possibly even a sociopath. His arrest did not reflect a brief lapse of judgement on his part. He knew what he was doing. It made sense in light of the way he had treated me: in both cases, he preyed on someone he perceived to be insecure and vulnerable. I have met many nasty people in my life, but Doug has to be the worst human being I have ever known. After Doug's arrest, I was proud of myself for being able to see the situation as "complicated", but now I'm just embarrassed. 

Now to the heart of this post. Why won't this memory let me go? Because every time I see someone do something unethical, my mind goes there, goes back to Doug. My reflexive thought is, "Is s/he another Doug? Is s/he harboring dark secrets?" I talked about it tonight with my therapist. It is a very traumatic memory that I need to work through. My friend from art school, Flora (not her real name), tells me that she actually struggles with the same thing. She doesn't even have Asperger's Syndrome. But I think that just speaks to the kind of person Doug was. And that is the kind of bizarre, horrible memory that could hijack anybody's brain.