Language Wars: Autism vs. Asperger's, Identity-First vs. Person-First

Well, it's been a couple months since my last post, and you might notice that there is a little change in my blog. It no longer is titled Eccentrics United: An Asperger's Syndrome Blog but is now Eccentrics United: An Autism Blog. My corresponding Twitter name (@eccentricsunite) is no longer "Julie the Aspie" but "Julie the Eccentric" (I chose not to change it to "Julie the Autistic" because it just sounded too silly) I implemented this change for a few reasons: 

First, a lot of people who were/would have been diagnosed with Asperger's Syndrome when it was still in the DSM (as opposed to just "autism spectrum") prefer "autism" for themselves. I am hoping this change is more inclusive for said people. After all, all people with Asperger's Syndrome are autistic. It is not, however, a statement of one term being better than the other. Whether you prefer "autism" or "Asperger's" for yourself, I hope that this blog resonates with you. 

A lot of people hate the term Asperger's Syndrome because it potentially serves as a functioning label and because it was named after a Nazi, Hans Asperger. However, the aforementioned have nothing to do why I made this change. Functioning labels are a complex issue (and one I hope to discuss eventually, but not in this particular post) and lots of conditions are named after terrible people. There is no reason why the condition named after Hans Asperger should be singled out.  

The most important reason I made this change is simply because over the past couple years I have gravitated towards describing myself by saying "I am autistic" or "I am on the autism spectrum" instead of "I have Asperger's Syndrome." My personal preference simply has to do with the grammatical imperative that comes with describing Asperger's Syndrome vs. autism, the latter which is more flexible. With Asperger's, you have to say "I have Asperger's Syndrome." With autism, you can say, "I am autistic" or "I have autism." I strongly prefer identity-first language ("I am autistic", "I am an autistic person") over person-first language ("I have autism", "I am a person with autism"), and Asperger's Syndrome does not grammatically allow it. However, I would still prefer Asperger's Syndrome for myself if there was a way to manipulate it into identity-first language. As far as I know, the majority of us prefer identity-first language for ourselves, but if you are someone on the spectrum who is more comfortable with person-first language, then that's absolutely fine! 

I would like to note, however, that all past blog posts where I talk about "Asperger's Syndrome" remain as they were. No retconning on this blog! 

I have made it clear that my preference is for identity-first language. And that is what it is: a personal preference. When neurotypical people use person-first, I generally correct them and tell them that most of us prefer identity-first. They are often flabbergasted, thinking that "person first" is what they're "supposed" to say. That is, after all, what they have heard from well-meaning but tragically misguided neurotypical parents and teachers! The reason many of us prefer identity first is because we feel that autism is an intrinsic part of who we are. We would never say "a person with femaleness" or "a person with gayness", for example. You really can't separate a person from autism, in my opinion. I don't think we are neurotypical people hiding under autism, waiting to be "fixed". 

Am I overthinking this? Possibly. But it is worth thinking about and discussing. It isn't the hill I am going to die on, however. If I correct someone and they continue to use person-first language out of habit, then I let it go. When my mother recently said "people with autism", I didn't bother correcting her because context matters: I knew that it just happened to be what came out of her mouth, not something she said because other people told her to. If most neurotypical people who used person-first did so just because it happened to be what came out of their mouths, it wouldn't bother me. But at the end of the day, I don't want to get hung up on language preference when there are more important things to worry about it.

Unfortunately, I have found that many of us in the autism community get hung up on language use to the point of absurdity. Instead of accepting that some of us use "Asperger's" or "person with autism" for ourselves, people dogpile on and accuse each other of oppression for using a functioning label and internalized ableism for using person-first language. To be quite frank, I am really sick to death of this nonsense. The autism community is eating itself alive with this word policing. Sadly, I got kicked out of a group on Facebook where autistic people answer parents' questions. Why was I kicked out? Because I sent a mother to my blog posts, which I thought would be helpful. However, the admins viewed one of the posts, which had usage of the word "Asperger's" and discussed functioning labels as a complex issue, as "problematic." The irony? It was part of my recent "Is It Ableism?" series.

A friendly reminder: Can We Stop Alienating Each Other?

Is It Ableism? Part 10: Challenging Comfort Zones

Links to previous installments in this series:

Part 1: Revisiting the Dark Ages

Part 2: Obvious Definitions of Ableism

Part 3: Defining Disability

Part 4: Internalized Ableism

Part 5: Is "Overcoming" Worth It?

Part 6: Accommodation 

Part 7: Infantilization

Part 8: Immaturity or "The Blog Post Where I Have a Meltdown"

Part 9: Unintentional Gaslighting

I have already covered quite a bit in this series, which is nearing the end (I anticipate twelve installments). In the last post, I discussed unintentional gaslighting, in which well-meaning people who want to help end up causing someone else (usually autistic) to doubt their own experiences and perceptions. In reference to anxiety-inducing situations, I vaguely alluded to the idea of pushing one's comfort zone as well as the potential limits of that. Not the smoothest segue, but I needed to get here somehow, and this very-sticky topic needs to be covered.

Part 1 and Part 5, I talked about the idea that autism is something that needs to be accepted and accommodated, not something for autistic people to "overcome." We would never tell a wheelchair user that they needed to "overcome" their disability and learn to walk, would we? No. However, the brain is more complex and pliable than a pair of legs; it is constantly evolving throughout the person's life. Like autism, another neurodevelopmental disability-- dyslexia-- exists on a spectrum. A typically-developing child who can only recognize her own name in writing at age four is most likely comfortably reading middle-grade novels at age ten. Perhaps a dyslexic child still couldn't even recognize his own name in writing at age four is still struggling with first-grade level books at age ten. A child with severe dyslexia might never learn how to read and will need to listen to audiobooks.* The problem is, others don't necessarily know where on the spectrum the kid falls, and the kid might not even know themselves. So what do we do? We challenge their comfort zones to see what they're capable of and help their brain evolve. 

Right now I can hear the accusations of ableism coming in because I even suggested challenging people's comfort zones. In fact, I wager I'm going to lose a huge part of my audience from this blog post. Well, as I said, the brain is forever evolving. It's a good idea to challenge people's comfort zones to facilitate that evolution, but also realize the potential limitations of doing so. The goal should never be to make someone with a neurodevelopmental disability "indistinguishable" from their typically-developing peers. Giving a chemistry textbook to a fourteen-year-old who struggled with first-grade literature when he was ten is not going to be helpful. Instead, you might give this kid the first Harry Potter book.** If Harry Potter turns out to be too difficult, don't force the issue; give him something easier. It's a challenge to the kid's comfort zone, but also a form of accommodation.

How does this translate to autism? Unfortunately, growing up I felt like my parents tried the autism equivalent of giving a chemistry book to a dyslexic child. Like many people on the autism spectrum, I have prosopagnosia, which sometimes makes it difficult for me to follow what I'm watching in live-action movies. Unfortunately, prosopagnosia was something I also wasn't identified with during childhood. When I was fourteen, my mom-- an English teacher-- seemed to think that the answer to this difficulty was not to show me something with adult themes that was palatable to me-- Stand by Me, a very adult movie with kids as main characters, seems like an obvious choice in retrospect-- but to take me to a black box production of Shakespeare's Macbeth, in which a few actors played multiple parts and didn't even wear any costumes. It didn't help. I couldn't follow the story, and at the end I just felt stupid and that there was something wrong with me for not having the gushing reaction that Mom expected. This felt like being thrown in the deep end of a pool and being told I'd better learn to swim.

Many people on the spectrum have reported similar attitudes from others about making eye contact. While my discomfort with eye contact was limited to unfamiliar adults and was something I naturally moved past around adolescence, many people in autism groups on Facebook have talked about finding eye contact not uncomfortable, but literally painful-- and no amount of intervention changed anything. Some of them even discussed being traumatized by repeated episodes of pressured, forced eye contact. With today's knowledge about autism, it would make sense to look at each kid individually and see what their potential is and what their limitations are. For me and others like me, perhaps making eye contact with a teacher into a fun game would have helped me become comfortable with this task earlier than I did. Some, however, might recoil at this game, no matter how much fun you think it is, and just not be able to do it. In that case, it's time for you to provide more accommodation, in the form of accepting that the kid-- or adult, if eye contact doesn't improve-- cannot make eye contact. Allow them to show you in their own way that they're listening. Maybe this could be in the form of the person holding up a hand. In any case, the autistic person needs to be the one to decide what that gesture is.

Most importantly, accept that someone's improvement in a skillset is going to improve (or not) at the rate that it's going to improve at, regardless of what you think is acceptable.

Oh, what's that? Only we have to have our comfort zones challenged, because we're "broken", right? Wrong. Everybody needs to have their comfort zones challenged, whether or not they have a disability. In fact, I think one of the biggest mistakes we make as a society is not regularly challenging kids for whom everything is easy. Maybe a child grew up always being the smartest person in all his classes and everyone-- including him-- knew it. He was enrolled in AP Calculus and spent all evening with his girlfriend instead of doing his homework. No problem! The next day at school he did his homework during lunch, less than an hour before math class, and got all the problems right. He did this all the time, and even graduated as valedictorian. 

Perhaps this person was so used to everything coming easily to him and was so used to being the big fish that when he began his freshman year at Princeton University, he discovered that this was no longer the case. Everyone around him was a "big fish" from wherever they came. The coursework was more difficult than he anticipated, and for the first time in his life something wasn't easy for him. This person's comfort zone should have been challenged more when he was growing up to prepare him for meeting others like him. Maybe he should have been enrolled in more challenging math classes at a local community college. Or, perhaps this person didn't draw well, and giving him art lessons in high school would have been a good way to challenge his comfort zone and show him that sometimes new skills aren't easy. 

So at the end of the day, all of us-- autistic, neurotypical, highly intelligent, learning disabled, etc.-- need to have our comfort zones challenged so that the brain evolves-- within reason, and in a way that's accommodating and understanding to the individual. For the neurotypicals reading this, I remind you not to be infantilizing when you're helping someone on the spectrum challenge their comfort zones. Make it a team effort, not something that seems to them like you assuming you know what's best for them because you're neurotypical.

Of course, it's also important that we on the spectrum advocate for ourselves and make our needs heard.***

See you next time.

*I don't know much about dyslexia and if I'm getting anything wrong, I invite others to correct me on the scenarios I'm presenting.

**I have heard stories about kids with dyslexia improving their reading skills because they were so determined to read Harry Potter!

***I realize that for many people this might not be easy. Perhaps it's another challenge to their comfort zone, one that a trusted friend or relative can help them with.

Is It Ableism? Part 9: Unintentional Gaslighting

Links to previous installments in this series:

Part 1: Revisiting the Dark Ages

Part 2: Obvious Definitions of Ableism

Part 3: Defining Disability

Part 4: Internalized Ableism

Part 5: Is "Overcoming" Worth It?

Part 6: Accommodation 

Part 7: Infantilization

Part 8: Immaturity or "The Blog Post Where I Have a Meltdown"

As always, names are changed.

In Part 7, I talked about how autistic people are often infantilized. In Part 8, I discussed how the actions of autistic people-- particularly meltdowns-- are dismissed as "immature." Meltdowns are often the result of a cascade of overwhelming and complex emotions and are not a question of maturity; how can it be when it's something that most people don't deal with at any age? 

Many of us on the autism spectrum have commented on having had our emotions, experiences, and perceptions invalidated, either when growing up, as adults, or both. At some point in the past few years, I began referring to these attitudes from other people as "unintentional gaslighting." As it turns out, many other people have independently come up with this term, and now it is commonly used in autism communities. So what is it exactly? Well, let's start by going over the definition of "gaslighting".

"Gaslighting" is when someone purposely makes another person doubt their own perception of reality, and it is often used in abusive relationships. Here's an extreme example where an emotionally abusive husband, Steven, might gaslight his wife, Holly: Holly comes home one day to see Steve making out with another woman. Holly calls out Steve for cheating on her. However, after the other woman goes home, Steve assures Holly that the woman was just a client, but that she stopped breathing because of some medical issue and he had to give her CPR. Steve might even say, "I don't know where you come up with this stuff. You let your imagination run away with you and then you overreact. You'd better stop it if you want this marriage to last." Even though Holly knows what she saw, Steve has a way of manipulating her into doubting even her clearest observations. She is eventually convinced that her imagination did run away with her, and she was just overreacting.

So what is unintentional gaslighting? It's exactly what it sounds like: making people doubt their own perception of reality, but for well-intentioned reasons. It often happens to autistic people simply because they are autistic. Because we interact with the world differently, and occasionally misinterpret situations, people often perceive us as being largely out of touch with reality, needing our neurotypical counterparts to explain even the most basic things to us. Even if we know exactly what we just experienced, family, friends, and others will tell us we were wrong, and we eventually begin to doubt our own perceptions. It feels like gaslighting, but the behavior is well-meaning and unintentional. That doesn't make it any less frustrating, however. 

Here's an example from my own life:  

In the spring of 1995, at age 14, I had been seeing my therapist, Dr. Klein, for about three years. I eventually decided to stop seeing him because it was becoming abundantly clear that he was unable to help, and he just didn't understand me. During our last session, he asked if I wanted to see my diagnosis. I thought, "After three years, he finally knows what this is?" Dr. Klein handed me a 3x5 index card, on which he had written, "Difficulty interacting with peers and adapting to new situations."* To this day, I have no idea what he meant by "difficulty adapting to new situations", seeing as how I tried new things all the time-- I was actually getting ready to go to overnight camp that summer, and that was my idea! The example of unintentional gaslighting comes in at the following exchange, which I have recreated to the best of my memory:

Me: What do you mean "difficulty adjusting to new situations?" I don't have a hard time adjusting to new situations!

Dr. Klein: What about the social problems you have with your peers?

Me: Being made fun of and hit is me having "difficulty adjusting to new situations?"

Dr. Klein: Well, it seems you overreact to things and get into conflicts with other kids far too often.

Oh, my God, where do I even start?

Aside from the obvious victim-blaming (which is another topic for another day), the unintentional gaslighting here was when Dr. Klein told me that I overreacted to situations where other kids bullied me. I had told Dr. Klein dozens of stories about kids spreading rumors about me, humiliating me in front of others, and physically assaulting me; in one case, a girl pinned me to the wall and tried to strangle me because she thought I had been flirting with her boyfriend. My peers were emotionally abusing me, but unfortunately back then bullying wasn't seen as a form of emotional abuse. It was just "part of growing up." And because it happened as often as it did, Dr. Klein obviously came to the conclusion that I was exaggerating and overreacting to the situations I related to him.

When I told my current therapist this story, he was shocked, and told me that even in the 1990s he would have never said something like that to a kid he was working with. Do people-- autistic and neurotypical-- overreact sometimes? Sure. But when the "overreaction" is something that's happening consistently, there's obviously something deeper going on: at best, it means that the person in question suffers from severe anxiety that might have nothing to do with external factors; at worst, things are really as bad as the person says and the anxiety follows. In my case, it was the latter.

Unfortunately, a lot of us on the spectrum have similar stories about such unintentional gaslighting. One that I often hear is from people with sensory issues. They might complain about bright fluorescent lights, only to have friends and family tell them, "Oh, it's not that bad," as if that will make them reconsider how the bright fluorescent lights are affecting them. Well, they are obviously "that bad" to the person with sensory issues!

In a personal "it's not that bad" incident that I experienced, when I was in fifth grade and joining the school band to play the saxophone, my music teacher told us that we were supposed to go into the kindergarten room the next day and pick up our instrument. Even though the room would be filled with little kids, I was anxious about walking into a room with a group of random people to get my saxophone. I expressed my anxiety to my parents, saying something like, "I'm faced with a real problem." Dad sighed in exasperation and said, "Oh, boy, here we go again. Every day it's the same thing." Around that time in my life, Dad often told me that he felt I was "looking for problems" and "making a big deal out of nothing." Well, it obviously wasn't "nothing" to me!**

Telling people they are "making a big deal out of nothing" or "it's not that bad" does not help the situation. Also, why would anybody "look for problems?" As I've said, sure, people can overreact, but if these seemingly "little" things are a big deal to someone-- autistic or not-- there is obviously something bigger going on, especially if there is a pattern of such reactions. I think that we as a society are getting better-- albeit slowly-- at listening and not being dismissive like this. But people need to continue listening and learning that some brains just work differently. They need to do better at validating our experiences even if they don't understand them. If something is "that bad" to someone, accept it and help them work through it to the best of their ability, but also keep in mind that they might not be able to work through it, depending on the person and depending on the issue.

And here I'm going to awkwardly segue into the next installment, which is about challenging one's comfort zones, and any limitations of that. Stay tuned.

*These are symptoms, not a diagnosis!

**Fortunately, the kindergarten room was empty when I went to get my saxophone that day!

Is It Ableism? Part 8: Immaturity or "The Blog Post Where I Have a Meltdown"

Links to previous installments in this series:

Part 1: Revisiting the Dark Ages

Part 2: Obvious Definitions of Ableism

Part 3: Defining Disability

Part 4: Internalized Ableism

Part 5: Is "Overcoming" Worth It?

Part 6: Accommodation 

Part 7: Infantilization

In my last post, I discussed the fine line between accommodation and infantilization. Infantilization is just a symptom of the bigger picture of how many of us are viewed, and that can be summed up in the word "immature."

Many of us who came of age before the 21st century grew up hearing the word "immature", to describe them (and let's be real, some autistic kids growing up today likely do too). And many people, myself included, are sick to death of it. Fortunately, I rarely hear it these days, but I strongly suspect that's more to do with rigorous training in "overcoming" coupled with an accident of nature as to just what my autism profile looks like than improved understanding on the part of neurotypicals in my life.

Right now I can hear someone saying, "Oh, well if their social skills are underdeveloped, isn't it right to call them immature?" 

Oh, my God, where do I even start? 

Maybe it would be fine if not for the baggage that the word carries and the fact that people usually use it to reprimand others. Let me elucidate with an analogy: Would you ever call someone with an intellectual disability "stupid"? No, you wouldn't, and most people would consider you an asshole if you did. Why? Because it is not a neutral descriptor for people with intellectual disabilities, but rather a crass, dismissive word with a lot of baggage. When people use the word "stupid" these days, they use it for someone with average or above average intelligence who is acting willfully ignorant or foolish. For example, you might call an adult "stupid" for running a red light. You might call a teenager "stupid" for trying cocaine. You might call your neighbor "stupid" for saying that homosexuality is a mental illness. But when you do so, you are reprimanding them; the understanding is inherent that these people should have known better. In fact, it's certain that they did know better but didn't care. 

To call someone with an intellectual disability "stupid" dismisses the very real cognitive limitations that are beyond their control for a variety of complex neurobiological reasons. It also carries the implication that they somehow made themselves that way and don't deserve to be treated with respect. In fact, I think it would be ableist to call someone with an intellectual disability "stupid." At the very least, it's tactless.

I would like to present the argument that the same could be said about the word "immature" for autistic people. Before I continue, I want to emphasize that I don't want to be the "word police" and insist that anybody who uses the word "immature" is guilty of ableism. It's this kind of orthodoxy that I want to avoid. Let's just consider and discuss the issue.

"Immature" is used in a similar manner as "stupid," to reprimand someone for an attitude or action when they certainly knew better. We might call a teenager "immature" for playing video games in his room during a family gathering. We might call an adult "immature" for changing the channel to a football game without asking the others who were watching a movie if it was okay to do so. We might call a ten-year-old child "immature" for screaming and throwing things because her parents wouldn't buy the American Girl doll they promised her for her birthday. In the case of neurotypical people engaging in such behaviors, it is probably safe to say that these were the behaviors of someone acting entitled or selfish, and it would be okay to use the word "immature" to reprimand them.

However, an autistic person could do these exact same things for very different reasons. The teenager playing video games in his room during a family gathering might be trying to get away from the overwhelming crowd and loud noises. The adult who changed the channel to a football game might have missed the cue that everyone else was engaged in the movie. And yes, the ten-year-old girl's reaction to not getting a doll she wanted can also be the result of something more complex than Veruca Salt-style selfishness and entitlement. In fact, her behavior that people might be quick to label "immature" is not a temper tantrum, but what is known in the world of autism as a meltdown. Before you, dear reader, accuse me of getting into semantics, let me explain the critical difference between a temper tantrum and a meltdown. They are indeed very different, even if they look the same on a superficial level.

A temper tantrum is something that young children do to manipulate a situation and get what they want. A neurotypical child might throw a temper tantrum when her parents won't buy her the doll she wanted, and she hopes her actions will make them yield to her demands; she is very much in control of her behavior, at least to a degree. After several firm "no"s and, hell, a half hour to calm down, she'll forget about it and go on with her life. 

A meltdown, on the other hand, is the result of being so overwhelmed by strong emotions, of a brain that experiences life more intensely than its neurotypical counterparts, that the person loses control. While it might be difficult to appreciate why a ten-year-old girl could experience such strong emotions about a doll, let me remind you that we on the spectrum have a propensity to fixate (which, unfortunately, many people also see as a sign of immaturity instead of different neurological makeup). This hypothetical girl has spent the month leading up to her birthday thinking about the doll literally nonstop, something that neurotypical children-- even younger neurotypical children-- generally don't do. When she eventually learns that her parents can't afford to shell out $145 for it, she does not experience a simple disappointment that most kids would feel but something much more intense, a feeling of genuine devastation. She is not angry at her parents for not catering to her whims, but angry at the situation. She is angry at the fact that something she invested so much of her emotional energy in is not coming to fruition. She may even know that her reaction is irrational and also be angry at herself for caring so much about something that she knows other kids her age wouldn't give a second thought about. After having her meltdown, she may even feel ashamed for her behavior but feel helpless for having been unable to control it. Imagine, then, after experiencing all these complex thought patterns and self-criticisms, when people around her dismiss her behavior as "immature" and also use the word to describe the sum total of who she is.

Autistic people --kids and adults-- can have meltdowns for a variety of reasons. One catalyst I commonly hear about is sensory overload, such as a barrage of loud noises that feel intolerably loud to them. I am not someone with sensory sensitivities, and this was never an issue for me. What triggered my meltdowns growing up and into my twenties (and today, albeit very rarely, and usually around my family where I let my guard down, and these meltdowns are usually in response to old wounds being reopened) was often the result of anxiety that accumulated over the course of hours, days, or sometimes several weeks. The anxiety could be related to trying to make friends in large groups as well as not understanding social situations and not feeling understood in turn. A series of these situations that added to my anxiety often culminated in a meltdown, triggered by something fairly minor. But what people didn't understand was that I was not reacting to that minor thing. It was as if there was a raw, exposed nerve that got brushed one too many times. I wasn't reacting to one thing, but a series of things. It was the end result of me trying to keep my stratospheric anxiety contained. 

I would always feel deep shame and embarrassment as well as a sense of failure for not being able to prevent the meltdown. What made matters worse were people's reactions and assessments of what they witnessed. Dad often angrily commented, "You need to learn to control your temper!" and sometimes even implied that I was acting on a whim. Other adults labeled my meltdowns as "emotional outbursts" or "temper tantrums" for not getting my way. 

The worst part was how people usually dismissed my behavior as "immature" and, by extension, invalidated my emotions, no matter how many different ways I tried explaining myself. I felt like parents, teachers, camp counselors, and others were summing up a reaction to a series of complicated emotions as the whim of someone who refused to handle not getting her way, or who refused to handle common life stressors. When dismissing me as "immature", they were blind to the reality of the complex, intense thoughts that led to the meltdown as well as the complex, intense thoughts that went through my head with promises to myself to control them in the future. Often, I spent copious amounts of time in my head trying to think up strategies to curb future meltdowns. Unfortunately, they rarely worked and only delayed the inevitable. In some ways, the more I tried to control the meltdowns, the worse they became when they finally happened. Why? It was another bit of pressure society put on me that only added to my anxiety, anxiety I felt I was rarely allowed to express. I also felt that people thought I had no idea how I was perceived when these meltdowns happened. Because, hey, I was "immature" and therefore beyond clueless as to how this behavior appeared to others, right? 

Wrong. Of course I knew!

In a story that I related here, when I was eighteen years old I was thrown out of an art class for a fairly minor meltdown, in which in frustration I said "shut up" in response to a teacher's annoying laugh (I meant to say it under my breath; my utterance wasn't intended for her to hear). When my parents picked me up, they were angry with the teacher. But they also told me that a teacher shouldn't have to expect to deal with such behavior from an eighteen-year-old.

I think a good argument could be made that somebody in the 21st century dismissing a meltdown as "immature" or saying that a teacher shouldn't have to expect certain types of behavior of people in a certain age bracket (at least when talking about autistic people) is a form of ableism. Returning to my earlier analogy, I feel that it is ableist to call a kid who struggles intensely with math as "stupid" and it would be pretty lousy to tell the kid, "No teacher should have to expect to go over times tables with a twelfth grader when he should have learned them in third grade." Once again, I don't want to propose this labeling as a form of "orthodoxy" (which I see too much of on Facebook and in social justice circles), but as a discussion worth having and a concept worth thinking about. 

I do, however, feel that this form of dismissing autistic people's emotions, no matter how unusual, is not only a form of ableism but also what some of us in the community have come to call "unintentional gaslighting." And yes, that will be the topic for the next blog post.

Is It Ableism? Part 1: Revisiting the Dark Ages

As always, names of people and places changed.

When I was visiting my parents in July, my dad and I were in the car having a discussion and he, for reasons I still don't understand, brought up a completely unrelated incident from the summer of 1999.

"I remember as your mom and I were leaving after dropping you off at Camp Maple Hill for staff orientation, I happened to turn around and saw that everybody except you was looking at Benny [the camp director]," Dad said. "You were looking off in another direction, and I thought to myself, 'This isn't going to work out. In a couple weeks, Julie's going to call us to pick her up because she got fired.'"

And that's exactly what did happen. That my dad brought up this incident so cavalierly and completely out of context of the discussion topic upset me. It also upset me because he had brought it up three or four other times in the past eleven years. Each of those times I told Dad not to mention it because I found it upsetting, and yet he kept forgetting and approached it with the same casualness one would have when discussing the weather. 

I don't remember the incident that Dad describes, and I feel it's unfair to assume I wasn't listening just because I was looking off in another direction. I got fired from Camp Maple Hill for reasons that were unrelated to what he witnessed that day in June of 1999. My termination had largely to do with the fact that, against my wishes, I had been placed with an older group of kids instead of the younger kids I had requested; these kids often took advantage of me and one time even snuck off during a camp outing to a water park. Additionally, other staff members misinterpreted my strange sense of humor and felt the need to report it to Benny, who often yelled and screamed at me for my missteps. According to Benny, an Australian staff member left early because I had managed to make her severely uncomfortable. I couldn't even imagine what she thought I was capable of doing to her that she felt the need to go all the way back to Australia. Even twenty-two years later, this is still something I feel horribly guilty about. Sometimes I find myself wishing I knew her last name so I could look her up on Facebook and apologize.

By the time Dad and I got home, I was feeling angry: angry at myself for messing up so badly at Camp Maple Hill-- which I had tried working at because the camp I went to as a camper, Camp Negev, wouldn't hire me as a counselor-- and angry at Dad for not respecting my repeated requests not to bring up the story about me looking away when Benny was talking during orientation.

I felt a familiar surge of adrenaline, threats of the fight-or-flight response beginning to brew. I said sarcastically, of Dad's thoughts to himself after dropping me off, "It's nice to know that you had so much faith in me."

Dad said, "Well, there were problems in the past."

The word "problems" proved to be a catalyst that blew open a mental vault of memories that I still remember with a raw intensity as if they happened last week instead of decades ago. The word is among many other words and phrases that I have come to think of as catalysts*. Others on this list include "immature", "annoying", "...deal with you", "...being difficult", "inappropriate", "...afraid of you", "aggressive", "What's wrong with you?", "You are/were the only one...", "Everybody except you...", "You need to learn...", "You refuse to learn..." and others. These words and phrases were some that I heard more times than I can count throughout my childhood, teenage years, and well into adulthood. 

I went through life thinking of myself as someone who constantly caused problems, who constantly made things difficult for other people and committed unforgivable sins. I was criticized regularly by peers, teachers, camp counselors, employers, and my own parents. I was apparently someone who had to be dealt with, put up with, handled... you name it. I was, in short, A Problem. People who told me I needed to learn to understand other people's perspectives in the same breath said I couldn't expect them to understand mine. 

In Girl Scouts when I was in 4th grade, if the other girls were making fun of me and I finally started screaming and crying in frustration, it was only expected that the Girl Scout leader would tell me that she was already upset because her grandfather was in the hospital and she didn't want to deal with any of my "nonsense." In middle school, if I missed some subtle social cue for the millionth time, I was supposed to understand that one friend after another would ditch me after having given me, according to them, "many chances."  If on my 1997 trip to Israel, one of my counselors told another one, "Julie drives me crazy and I don't want to deal with her**," I was expected to reflect on how I, as a sixteen-year-old kid, had continually made things difficult for a twenty-seven-year-old woman. If at Camp Maple Hill, I made a smartass remark to other staff that for God-knows-what-reason other people took seriously and felt the need to report to Benny, it was my fault for not knowing how they would react. 

It's been a long, arduous process to re-contextualize events in my past as events experienced by an autistic-- and ultimately well-meaning-- person, one with an undiagnosed disability surrounded by people who rarely tried to understand. I've had to work on re-contextualizing such events as, "Life was difficult for me," rather than, "I made people's lives difficult."

As memories like these rapidly cascaded through my head at Dad's statement, he then tried to assuage my visibly accumulating distress by saying, "But you've overcome it."

"And what if I hadn't?" I asked evenly, glaring at Dad.

"Then we would be dealing with it," Dad said.

And there it was, another indication of me as someone who had to be "dealt with." Dad's intended compliment was a backhanded one, one that left many things unsaid, such as how insufferable I had been in the past. While that wasn't necessarily his intention, that is what I heard.

Then, I quipped sarcastically, "Oh, okay, so I'm more like a neurotypical person then? Is that what you mean by 'overcoming it?'"

Dad denied this, and then in confusion asked me why this conversation was so upsetting. I stopped myself short of saying, "It's ableist," but that is what I was thinking. I didn't say it because I wasn't-- and am still not-- ready to invoke that broad stroke. Instead I said, "It's-- it's complicated." Because it is.

There are many people in autism groups on Facebook who are living with their parents, people who can't hold down a job because they can't mask well enough to pass as neurotypical, people who can't even have a telephone conversation because it's too stressful for them. I thought to myself, Is the fact that I "overcame" so many of these issues a testament to my character or an accident of nature, combined with severe pressure from society, ultimately a survival mechanism to prevent me from being traumatized further? Does this make me "better" than those who aren't able to live independently? If I hadn't "overcome" the issues in question, would it mean I was a failure? I didn't have an answer to these questions, and I still don't. The question of "is it ableism?" along with the question of whether I've also suffered from internalized ableism also hangs in the air, and I've been thinking about it for the past few months. 

The fact is, ableism isn't always easy to define, but it's definitely real. It's also a term that is sometimes overused, so I'm trying to be careful. There is a lot to unpack, which is why it will take a series of blog posts instead of just one. Stay tuned.

*I am avoiding using the word "trigger" because it is a medical term for a phenomenon affecting those diagnosed with PTSD. I feel that it is often misused and overused and I don't want to fall into that trap. 

**A friend on the trip overheard this exchange and told me about it a year later. 

Please Stop Using the Word "Challenges": An Open Letter

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

Neurotypical Privilege Part 1: What is Neurotypical Privilege?

Jealousy

This is a bit of a follow-up to my previous blog post, "Owning Your Emotions".

You have seen the intensity of my emotions when I become infatuated with someone. I should also note that I get ragingly jealous, but not in the way you think. Unlike most people, I don't get jealous when the object of my affections already has a girlfriend. To me, that makes no sense. Unless the person is polyamorous (or having a secret affair), only one person can be the significant other. It is not something that singles me out. It is something where only one person gets put on a pedestal, and it is a statement about the person, not me. If it were a statement about me, it would be a statement about everybody else who didn't get to be that person's girlfriend/boyfriend. What's frustrating is people don't believe me when I tell them this. They think I'm not being honest with myself. I think if anything my blog posts show just how honest I am with myself.

So how do I experience jealousy when I become infatuated with someone? It's simple. I'm jealous of everyone else who gets to be friends with that person. I, after all, have been singled out as someone not worthy of that person's friendship. And then I become ragingly jealous, to the point where it haunts me in dreams. For example, after Sergio, of my last blog post, stopped talking to me despite reaccepting my friend request a few months after the initial blowup, it was already firmly planted in my head (mostly due to my mother's comments) that I was too "immature" to have friends who were a few years older than me. 

Sergio is a phenomenally talented professional artist: he's a painter, a filmmaker, a musician, and an actor. He even appeared in an opera. There was a photo of him on Facebook performing in the opera, and he and a few friends were commenting on it. I thought to myself, "Opera is sophisticated. I'm not interested in opera. That makes me immature. My parents are, of course, interested in opera because that's what intelligent people have to be interested in." Never mind that around that time I had started reading books about evolutionary biology by Richard Dawkins and others. Oh, no. Not being into opera makes me "immature" and "uncultured". But yes, my mind latched onto that as a possibility of one reason why I did not have Sergio's permission to be his friend. And my mind did not let that go. It doesn't help that I have incredibly vivid dreams, complete with sharp images and convincing sensory input. 

One night I had a dream that I walked into a room and saw my mother effortlessly talking up a storm with Sergio. She was allowed to talk to him and be his friend. I stormed up to her, jabbed my index finger at her chest, and said, "Why the hell do you get to be friends with him?" This dream was a perfect symbol of my jealousy and my anger of what was expected of me. My mother-- who was co-captain of the cheerleading squad in high school; who has always had a very feminine hairstyle, has always worn big hoop earrings and makeup, not because she feels she has something to prove but because these are fashion decisions that reflect her personality; whom everyone loves within nanoseconds of meeting her; who loves hanging around with large groups of people-- was allowed to be friends with Sergio. After all, she was in great contrast to me, the high school track runner who always came in last; the tomboy who hates makeup, rarely wears earrings (and never big hoops), and who felt relieved when she got her first androgynous haircut at age 20; and who does not enjoy spending time in large social groups. No, my mother was the standard of normal and socially acceptable, and I would never meet that standard. And unless I could, I would not be allowed to be friends with people a few years older than me, or even have the privilege of talking to them on an equal basis. No, once neurotypical people reach adulthood, having friends of varying ages is not an issue. And they take this for granted. It seemed that I, on the other hand, was expected to say to myself, "Well, I have Asperger's, so I'm immature, so of course I am not allowed to have older friends. Why would they want anything to do with me? Hey, no problem."

Likewise, when I have had crushes on other people, I have felt a similar jealousy. In college, when my teacher, Doug, lied to keep me out of his class, I was jealous of everyone else who got to be in the class. Not being pushed out of a class is something that neurotypical people take for granted. Oh, and there was the time when I got him an Onion anthology to give to him on the last day of class the first semester that I had him. His response when I tried to give it to him? "I don't want it." However, the following year one of my classmates gave him a Christmas present and he thanked her profusely. She was "normal", so she was allowed to give it to him. I'm sure anybody else who wanted to give Doug an end-of-semester present would have been allowed to. After all, everybody else was allowed to be buddy-buddy with him. There was one particular girl who had this privilege (and no, she wasn't a "hot babe"-- she was severely overweight). She, like my mother, is "sweet", "charming" and "charismatic", things that I'm not. One day, because I was just in such a horrible state of mind over all this, I went up to her and said accusingly and with no small amount of sarcasm, "It must be so nice to be Doug's favorite."

Then at the camp in Michigan there was Joe who went to Gary, Indiana with a friend after promising to go to Chicago with me. I saw him hanging around groups of people but refusing to associate with me and acting like I was beneath him in front of all of his neurotypical friends (all the while assuring me, when we were alone, that he really liked talking to me). I was jealous of all those friends of his who, once again, took for granted things that I was expected to earn. 

I should also note that I don't feel jealousy only when I am infatuated with someone. I have felt jealousy for other reasons. Once, someone who I went to camp with got a book published. It was about "women's issues"-- marriage problems, childbirth, shame of infertility-- and it got rave reviews. I felt a pang of jealousy, that such issues that have been done to death in the past were in a book getting rave reviews. I denied to myself that I was jealous but my unconscious knew better. How? Well, one of my vivid dreams, of course. I had a dream that the author of the book was being interviewed and was getting a princess-Diana style greeting. You've seen the footage of the incessant camera flashes that went off when reporters took Princess Diana's picture. It looked like a strobe that would be dangerous to someone with epilepsy. In the dream that's what was happening to the author of this book. In the dream I also went to my mother about it, and she said dismissively, "Well, this is the kind of thing that women like to read." I want to be a writer, and I would never write something like this.

Ultimately, I bought and read the book to support the author. Ironically, the book was actually therapeutic-- it was about raging jealousy. I was up all night reading it. But the point still remains. I felt like who I was was "wrong" and I would never be who I was expected to be. 

This post has been very cathartic. The issue with Sergio came up last week with my mother (long story as to why) for the first time since it had happened seven years ago. To my surprise, Mom said she had thought about it several times over the years and that she thought Sergio's shunning me was horrible and insensitive. Then she asked me why I didn't mention it if it still bothered me. I said, "Because whenever I tried to bring it up with you, you just shut me down and told me to get over it." She apologized profusely. She also admitted that she was wrong. She told me she was ashamed of how she reacted and admitted that her reaction was humiliating to me and made things exponentially worse. She also admitted that Dad saw with greater clarity what was actually going on. Most importantly, she admitted this: 

"I was blind."

People Just Don't Get It

Note: This is an angry rant, so there will be some swearing. If you're offended by that sort of thing, just read my other blog posts.

This post is an angry rant, because I am pretty fucking angry. It's hard enough to keep a happy, optimistic face for this blog. I want this blog to come across happy and optimistic because I want to give parents hope that everything is going to be okay. But I have to be honest. There is a lot in my life that isn't okay. Sometimes I get so frustrated and angry that I break down crying, thinking, "Where do I even begin to fix this?" And by "this" I mean being financially independent like my peers. I am turning 34 in October, and I still don't have a career or even a decent-sized apartment, let alone one that I can afford on my own. Everybody else my age I know-- and many ten years younger-- has a career, has a decent-sized apartment (or a house, if they're in the suburbs), and doesn't need help from their parents to make ends meet.

"Oh, but at least you're not starving in Africa. You don't know how lucky you are." You know what? You're right. I'm not starving in Africa. So fucking what? That doesn't make my frustration and anger any less real (It's a logical fallacy; I forget what it's called). I grew up relatively privileged, in a white, middle-class household with educated parents. I lived in a relatively affluent suburb in Pennsylvania. I went to college and grad school. Given my background, I should have a career now and be financially independent. But if you have Asperger's Syndrome, growing up privileged doesn't mean shit unless you are born into wealth. I still have to get a career. I have a Master's Degree and am making $12.75 an hour at a temporary work-at-home job. What is my job? Transcribing. Mind-numbing transcribing that any idiot with a GED can do. And because I lost my last two jobs, each after a paltry four months (in both cases they said I was too awkward and made our clientele uncomfortable), to stay in Boston I had to give up my spacious, one-bedroom apartment and downgrade to a studio. It's $1200 a month, and the only way to get any lower in Boston is to live in a basement apartment not much bigger than a walk-in closet with no windows. Even then, the lowest the rent goes for something like that is $1000. The other option is to get roommates, which can bring each person's rent as low as $700-$800 per month. But all my roommate situations in the past have been disasters. My parents even said they would rather help me pay for my own little corner of the universe than take the chance that I would get into some ridiculous conflict with roommates and then have to move out (moving, of course, isn't free).

I know that I'm more intelligent than my employment history and living circumstances reflect but that makes no fucking difference unless you have pristine social skills. And research has shown that the decision to hire someone an any job is almost entirely based on how well they think she'll "fit in" with her coworkers, much more than if she has the talent to do the job. I'm not the kind of person who fits in. It's not that I haven't tried, it's that I can't. Making friends is not an issue for me because I live in a diverse city and can easily find social misfits/intellectual nerds who'd rather talk about psychologically intense topics than how someone's third cousin once removed is doing. But most people would rather talk about the latter, and that's what they expect you to do on the job, even if it is not related to the job description. People know when I'm faking it. I can only feign interest in somebody's third cousin once removed before the holes in my mask start to form. I then have to retreat to my little corner of the universe and do my work. But no. Most high paying jobs expect you to work as a team. I work in groups with about the same ease and naturalness as an asexual person behaves like John F. Kennedy.

"Oh, well have you tried this? Or that? Or the other thing?" Yes, of course I have. I've finished my undergrad 11 years ago. You think I haven't fucking tried? Of course I have, and I've run into one brick wall after another.

Oh, and people have told me over and over that I come off as harsh, angry, argumentative, and even cold.

"You know, the way you're talking to me when you're upset, you're real intense and argumentative and harsh. Maybe that's what's gotten you in trouble at work." No! That's not what has happened! I'm letting my guard down with you. At work I try to hide these emotions. People have told me I'm too "intense" or "harsh" or "argumentative" even when I'm happy or joking around. It's like all I have to do to fucking offend someone is open my fucking mouth, even if I just ask how they are! So you know what the other option is, to make sure I don't offend anyone or make anyone uncomfortable? Not talk. And then I become a fucking stiff and they still feel uncomfortable, but for different reasons.

"Well, you know, you do tell inappropriate and sometimes shocking jokes. Do you do that at work?" 

Yes, I have a raunchy, macabre, and downright absurd sense of humor. I also love saying things for shock value just to see how people react. But you know, I'm not Rainman. I tell the "shock value" jokes you're talking about to friends or on online social networks under an anonymous name, not in a professional setting. My friends laugh, and people online click "like" or write "Hahaha!" I learned years and years ago that there's a time and a place for these things, and work sure as hell isn't it. People at work have called me "inappropriate" for reasons that I'm not sure of but that have nothing to do with the jokes I tell outside of work.

"Well you're very interested in the work of Richard Dawkins and Dr. Kevorkian. You bring those guys up all the time. Are you talking about them at work? You can't do that, you know. They're too controversial."

Yes, I fucking know that I can't bring up these guys or their work in a job setting-- especially not Dr. Kevorkian-- because people at work represent a diverse range of sociopolitical and religious beliefs and I don't know these people well enough to have such discussions with them. I don't feel deprived if I can't bring up Richard Dawkins or Dr. Kevorkian, either. I am at work to do work. Of course, the funny thing is I've heard radically conservative people at work bring up their shocking views without getting in trouble. 

"Maybe you are talking about Richard Dawkins and Dr. Kevorkian and you don't realize it?"

I think I'm fucking aware of what topics I'm bringing up. Don't patronize me.

When people-- friends, relatives, and even my shrink-- say these things to me, they clearly don't get it. I know they're trying to help me, reaching for the lowest hanging fruit, so to speak. But after a while it's like I'm hearing a mantra, a list of phrases from a pull-string doll. And yes, when I get frustrated enough, I do explode and curse a blue streak (it upsets them, but they know not to take it personally and I do apologize later). But they don't get it. They really don't. Why? They're coming from a neurotypical perspective, that the only way that I as a white, privileged middle-class American could be in this situation is if there was something I haven't tried. The fact that even my shrink gives these obvious suggestions is very telling. Hell, even my parents only started to "get it" in the past five years or so!

This is my life as an adult with Asperger's. Don't get me wrong: I am happy most of the time. But then sometimes (like last night when I was talking to my shrink) old wounds get reopened. No, they get reopened, have salt poured in them, and are pissed in. And I get angry and explosive and cry. Sometimes I just can't take it. Working out usually helps a little, but recently I injured myself while running and I can't do much of anything in the way of vigorous exercise until I heal. 

I'm angry. I'm hurting. I'm cynical. I'm frustrated. I have Asperger's Syndrome.

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.