Knowing My Audience

Yikes, it seems as if every time I start one of these posts, I have to acknowledge that it's been a while since I've last posted. Well, here we are again. And today I have a bit of a bee in my bonnet: It seems that people who've known me for many years sometimes revert to a mindset in which they see me as someone whose social judgment is the same as it was decades ago, in my teens and in my twenties. Yes, it is true. As someone on the autism spectrum, I used to be pretty bad at reading certain situations and knowing which people were an appropriate audience for my very odd sense of humor. But that was a long time ago. So what's been going on that I feel the need to write about this? 

A little background: In March, I managed to get the attention of a celebrity* on social media. It happened when I began posting drawings I made of him as a cartoon character. He liked them so much that he shared a few of them with his followers, and even ended up following me. I was pretty stoked about that! Some of these drawings are "whimsical" and "cute," and others involve my strange sense of humor. In terms of the humorous drawings, well, let's just say they involve a running gag that is a little off-the-wall, complete with my trademark ridiculousness as well as a dash of irony. I was pleased that he liked them so much. However, in the interest of not being one of those pesky fans I also told him that if they started to get annoying-- these days when you tag someone in a post, it sends it to their DM instead of their regular notifications-- to let me know and I would stop. He told me, "Keep 'em coming," and said that he thought they were very funny.

Unfortunately, two of my friends have since reflexively warned me that I might be making this celebrity "uncomfortable" and to "tread lightly." One of them even bluntly implored me to "Stop harassing him." I found this to be incredibly disconcerting, what with the types of loaded words that they used. While I realize that they were not aware of me DMing the celebrity with the offer to stop posting the drawings if they got annoying, this kind of knee-jerk reaction and unsolicited advice feels like it has the subtext that these people do not trust my judgment, perhaps because of stupid things that they remember me doing twenty-ish years ago. I feel like if literally anybody else had been making these drawings, they wouldn't have tried to warn them about anything. Above all, it felt infantilizing, and I even let them know this by telling them, "You sound like my mom." Fortunately, my actual mother had not made these comments on my drawings. I was glad, because I felt like she was getting better at trusting my judgment.

Spoke too soon; the other day on the phone Mom asked me if I was going to stop doing the drawings featuring the running gag. She denies fear of me getting myself in trouble as her motive for asking me this question, but I can't imagine why she would ask that if there was not that subtext. On the same day, this guy I'm Facebook friends with (I barely know him and never met him in real life) called me out about it on a public thread instead of at least DMing me with his concerns. It was embarrassing. And like with my friends and my mom, these concerns weren't expressed in the form of, "Hey, are you sure he's okay with these jokes?" but rather a lecture, warning me of "consequences."

Consequences? What consequences? That the celebrity would sue me? I doubt they were afraid of that; that's just silly. Well, maybe this guy and my friends were afraid that the celebrity would unfollow me. Okay, and? Sure, I would be pretty disappointed if that happened, but I wouldn't lose sleep over it; it's not like I'm laboring under the delusion that I'm friends with this guy. Other than those two examples, I can't imagine what their concerns were. But I guess at the end of the day it's a knee-jerk reaction, based on difficulty of letting go of stupid mistakes I made decades ago. It really bothers me that I continually have to deal with such reactions instead of being given the benefit of the doubt that a neurotypical person would get.

I guess I am hoping that this post also serves as an open letter to people in my life who continue to have rapid-fire reactions to certain things I say and do. Look, I promise that I do know my audience. In the (admittedly limited) interaction I've had with this celebrity, the impression that I get is that he's a decent guy and, more pertinent to the situation, very laid back, silly, self-deprecating, and someone who doesn't take himself too seriously. Importantly, he seems to share my strange sense of humor. Do I know him personally? No. Can I gauge what kinds of things are funny to him? Absolutely. I've been in touch with other celebrities before (hey, drawing is a very powerful communication tool), and I can tell you that one of them did not seem to share my absurdist sense of humor. I would never have made drawings of him with the type of running gag I make of the celebrity I currently interact with. I imagine that the humor would have upset him, not made him laugh.

And, sadly, because so many people had vehemently warned me about possibly making this celebrity uncomfortable (even as he continues to follow me on social media and share my drawings), I got it in my head in a kind of heat-of-the-moment frustration that I should message him with an apology and the promise to stop doing the drawings with the running gag.

His response? "Please don't!"

*It's probably not that hard to find out who I'm talking about if you go onto my social media accounts, but I also don't want to draw unnecessary attention to him here by naming him. 

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 12: It's Complicated

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

Part 10: Challenging Comfort Zones

Part 11: Advocating for Your Needs

We have unpacked a lot about ableism in this series, and it's only natural that it took a large number of posts to do so. It is a very broad topic with a lot that deserves examination. There is much more I wish I could have covered: For example, what's the difference between a variation in brain function and a disability in brain function? Is it all a matter of opinion? Should it even be defined? And are there limits to accommodation, let alone "reasonable" accommodation? These are endless conversations, and maybe I will tackle them sometime. However, I hope that I managed to elucidate a number of other issues that I feel are overlooked when discussing ableism. I also hope that I have raised your consciousness in the kinds of things that could be classified as ableist. However, it is here that I would like to urge you to be cautious when labeling attitudes or actions of people as ableist-- let alone people themselves as ableist.

Ableism is a complicated, nuanced issue, whether it's about how it relates to autistic people or people with other disabilities. As I've alluded to in this series-- and in a recent post, "Can We Stop Alienating Each Other?"-- I feel that "ableist" and "ableism" are words that, while they have their place, are unfortunately overused to the point where they feel more like a thought-terminating cliché than a complex concept worth examining. I see this a lot in autism groups on Facebook and in social justice circles in general. What has become apparent lately is that there seems to be a kind of orthodoxy in these groups. That is, there has to be a universally-agreed-upon definition of what constitutes ableism that cannot be questioned unless that person wants to be stamped with a scarlet letter of sorts.

I see accusations of ableism hurled around when, God forbid, someone in an autism group says that they prefer the word "Asperger's" instead of autism to describe themselves. One reason this upsets so many people is that "Asperger's" is a word used to describe someone on the autism spectrum who is considered "high functioning." People who object to the use of "Asperger's" often tell the person that they feel superior to "lower-functioning" autistic people, whom they want to distance themselves from. They accuse the person of ableism, internalized ableism, and all-around bigotry. Whether or not there is any truth to this is a discussion worth having, but it's not going to work unless the discussion will be civil.

Right now I can hear objections to my comments about "civil discussion" in the form of accusations of ableism: What about people who have been traumatized when they were classified as "low functioning" and therefore "hopeless"? One or more of those people might have PTSD and cannot help but have an angry response. How dare I demand a particular ability that they might not have? 

Again, a discussion worth having... and it's important to note that not everybody has experienced that kind of trauma or, if they have, they might not have PTSD from it. People who can handle the discussion should have it, but the people who can't might do well to turn off notifications for the thread. Is that an ableist statement? 

What about the common accusations of internalized ableism?

Is it internalized ableism for me to be glad I've never had sensory issues and to wish I didn't have prosopagnosia? Is it internalized ableism for me to say I'm glad I don't need to use a wheelchair? What about someone who needs a wheelchair and wishes they didn't? Years ago, my mom, a retired teacher, told me a story about how one of her students, a wheelchair user, wrote about how he often had dreams about being able to run down a football field. He was always devastated when he woke up from these dreams, as he didn't know what it was like to be able to run, or even walk. Is he guilty of internalized ableism? I think not. But if you think so, then probably every one of us-- including people with disabilities--  is guilty of internalized ableism on some level. And at that point, the term ceases to have meaning. In any case, in none of these situations am I-- or my mom's former student-- making declarations of inferiority to people without these disabilities. We just prefer we didn't have them.

I have even heard stories about people who have confessed to being worried that some activity they do will lead to an accident that will make them need a wheelchair. Then they feel guilty because they think it's a form of internalized ableism. I'm sorry, but that's absolutely ridiculous. It's nice to be able to walk. What's ableism is looking down on people who can't!

What if the late astrophysicist Stephen Hawking (who likely wished he hadn't become paralyzed and had to use a wheelchair, but that's a different point than the one I'm about to make), had gotten into an accident that affected his cognitive function? Let's say his nonverbal IQ score, which was apparently an unbelievable 160, dropped to 102. IQ isn't everything, but 102 is not enough to handle something as intellectually demanding as astrophysics. When I was a kid, my nonverbal IQ score was actually measured at 102 (I have nonverbal learning disability, like many of us on the spectrum). And guess what? I wouldn't blame Hawking for being devastated if this happened to him, and I wouldn't consider it ableism, internalized or otherwise. Because you know what? It sucks to be able to lose the ability to do something, especially if that ability was important to you.

There are some truths that we can't pretend don't exist. Like it or not, every interaction that we have with one another assumes some level of ability. By writing this blog post, I am assuming that you can see and that you can read. Or, at least I'm assuming that if you can't do one or both that someone-- or something, like the voice function on your device-- is reading it to you. I'm also assuming that you know how to turn on your device. I also assume that your reading comprehension is within typical or near-typical limits. Otherwise, you might not be able to understand the blog post. Is it ableist for me to make these assumptions?

Maybe in the Facebook groups where people shout "ableism!" like it's going out of style, they're also assuming that everybody in the group can read. How do they know there isn't someone in the group who can't read for some reason and is just there because they like looking at the color scheme in the group, and just being there makes them feel like they belong? Nobody knows for certain that this isn't happening.

We may be wrong sometimes when we make assumptions about other people's abilities, and that's okay as long as we are open to learning. For instance, someone might have a knee-jerk reaction when witnessing a ten-year-old having a meltdown in the store because his parents won't buy him the toy he wanted. She might assume that the kid is spoiled and has parents who normally cater to his every whim. She might turn to her friend, an adult on the autism spectrum, and say, "That kid is throwing a tantrum! He wasn't brought up right!" The friend might say, "That's possible-- or it could be that he's autistic. Maybe he's having a meltdown because he's been overly invested in this toy for months, and he's devastated now that he is learning that he can't get it. If you think this is hard for you to witness, think how hard it is for him to experience it." If she is open to what her friend tells her and is willing to learn from her insight, then that's a good thing!

What about ableist language? I've heard arguments that saying, "This movie is stupid," is ableist because of the word "stupid." I don't think so, because, as I stated in Part 8, this is a word that is used to describe actions or attitudes when a person with average or above average intelligence was doing them clearly knew better-- or, in the case of a movie, the word just means it was badly written. It's not a medical term, and most people understand that it's lousy to use it to describe someone with an intellectual disability. "Retarded," however, is a different matter, because it has been a medical term in living memory. 

There is no limit to what we could consider ableist. Maybe it's ableist to not drink during pregnancy because the alcohol could cause the baby to have an intellectual disability. Hell, by extension it means that the mother is ableist for valuing intelligence and wanting her child to not struggle in school. You see how ridiculous this sounds? 

And one more thing that I want to point out is that none of us have 20/20 foresight. There are many things that parents, teachers, camp counselors, and peers said to me in the '90s that would be considered ableist with a 21st-century awareness and understanding of autism and other conditions. As I've said, I believe that the appropriate application of the label of "ableism" is contingent upon the person knowing that a disability is present, and therefore I have to let some of these people off the hook. We as a society are learning more, and this is a sign of progress. There is no doubt in my mind that we are-- hell, I am-- saying things today that will be considered ableist in twenty years in light of a disability that hasn't been identified yet.

I am open to having my mind changed on this post-- hell, on all of the posts in this series. I might look back at this series in a month, a year, a decade and realize that there are holes in my arguments and that maybe there would be a better word than "ableism" to describe the overarching theme of this series. And just like with the book that I talked about in Part 4, I might end up cringing at some of what I have written. 

People evolve and their perceptions evolve, and we have to let them. 

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. 

Frustration, Anxiety, and Tension Part 2: A Witch's Brew of All Three

In my previous post, I discussed the way frustration, anxiety, and tension can mount as you try hard to better yourself, only to be dismissively told that you're not trying. But what happens when these demons overwhelm you and you end up doing something stupid and get into even more trouble than before?

One particular incident happened to me at age eighteen, on a Saturday morning in 1998 during my senior year of high school. I was taking a figure drawing class at a local university, and during that time in my life, I was dealing with a lot and my anxiety was like a raw exposed nerve.

First, I had just finished what would’ve been my final summer at Camp Negev. I had been in the C.I.T. program that summer, and it was clear that I would not be hired as a counselor the following year. Camp was the only place I’d ever felt comfortable, and it was being taken from me. This was coupled with knowing I would not be allowed to go on the gap-year Israel program affiliated with camp. Triple that with the stress of getting ready to apply to art school to study animation. It was becoming apparent from looking at the other students’ work that they were much better than me. Did I even have a chance of getting accepted to art school? That was quadrupled with the constant feeling that my parents didn’t understand me and didn’t support who I was. Even if not their intent, they often made me feel I had to change.

What many people didn’t understand was that I was thinking about these issues constantly, as if a little bug were in my ear whispering harsh criticisms to me: “You can’t draw well enough.” “You’re a horrible person and nobody at camp wants you back.” “You can’t spend a year in Israel because there’s something wrong with you and you aren’t fit to be around normal people.” “You’re not feminine enough and you should have outgrown that tomboy stage years ago if you want anybody to accept you.”

To make matters worse, I noticed early on that the teacher of the figure drawing class did not seem to like me, often talking to me in a condescending manner. I don’t remember specifics, but I do recall that I was trying to convince myself it was just my imagination. After all, my own parents often commented that I "misinterpreted" and "read too deeply into things"-- even when I knew damn well what I was looking at. One day when I was in the bathroom, a girl from the class commented, “I don’t like the way the teacher talks to you.” At least there I felt validated, that this wasn't my imagination. I was also glad to know that somebody was on my side.

As time went on, it was becoming increasingly clear that the teacher not only didn't like me but genuinely disliked me. I watched in resentment as she got along well with the other kids and really seemed to like them. They also seemed to like her, often laughing together like old friends. Her loud, boisterous laugh got on my nerves, as if it were rubbing in my face how the others could get along with her and I couldn’t because there was something wrong with me. What indeed was wrong with me, I wondered, that made her feel that she didn't have to be nice to me? Once, she even chastised me for arriving two minutes late for the 10:00 class. A week or two later, she assured another student who apologized for arriving at 10:07 that "seven minutes is no big deal."

At some point during the semester, something happened that made the teacher take me into the hallway in frustration. Unfortunately, I don’t remember what it was, but I am confident that if I found a record of the incident somewhere, it would come right back to me. We had a tense conversation that ended in some kind of truce, for lack of a better term. At some point during the discussion I mentioned that other teachers I’d had in other classes at the school liked me.

But the dynamic between us did not improve.

In the second-to-last week of class, I was particularly on edge, the raw exposed nerve particularly irritable from the accumulating tension over the past few months. The teacher did her signature laugh when talking to one of my classmates. For some reason, it was at that particular moment that I had reached my limit. I whispered, “Aw, shut up!” At least, I had meant to whisper it, but I accidentally said it loud enough for her to hear.

The teacher yelled, “Excuse me? Who did you just tell to shut up?”

The room fell silent, all eyes on the teacher and me.

In a panic, I stammered, “Nobody. Myself.” The teacher grabbed me by the wrist like I was an unruly child and pulled me into the hallway. Eyes narrowed into slits, she leaned forward, inches from my face. She yelled at me about every imperfection I had: speaking out of turn, getting openly frustrated with my artwork, not always following directions (I guess she thought this was intentional). At one point, she said, "I have tried putting myself in your shoes. I realize that there is something wrong with you." She also said, “You are going to fuck yourself over if you think you can go through life acting like this. I have had it with you. You make me feel like shit! Oh, you know all those other teachers who you said liked you? I’ve talked to all of them and they said they didn't like you. I have been pulling every string that I can to make sure you don’t go to this school.”

Humiliated from having heard my own self-criticism come out of another person, I sheepishly said, “My teachers in high school like me.” Her response was an even more exaggerated version of her signature laugh, as if it were the most ridiculous thing she had ever heard-- how could anybody like me? Then she told me I could come back into the room and work but I wasn’t allowed to talk to her. She said if I had questions to ask the other students.

Needless to say, I only went back to get my things. Then, I found a payphone and called my parents who, thankfully, had cell phones back then. They were at a restaurant with a friend. Just as their food arrived, they got my call and had to leave to pick me up. When I found out this information, I thought to myself, "God, my parents can't even have breakfast without me fucking things up. What is wrong with me?"

My parents arrived, and I waited outside with my mother while my father went in to talk to the teacher.

When Dad came back outside, he told Mom and me about the conversation he'd had with the teacher. He said that as soon as the teacher realized that the guy who came into the room was my father, she sent her students on break and vigorously shook his hand with both of hers, obviously knowing that she was in trouble. Then, when my dad called her out on saying that she was going to make sure I didn’t go to the school, she said, “Oh I just mean if she comes I’ll make sure she gets more psychological support.” Dad said, “I’m her father and I’ll be the one to decide what psychological support she needs, not you.”

In a desperate attempt to explain the situation to my parents, amid tears I said, "It's my OCD!", invoking my recent (and ultimately incorrect) self-diagnosis of obsessive-compulsive disorder to explain why I had the issues that I did. Dad shook his head and said, "No. This is just another case of you saying the first thing that pops into your head." On the car ride home, Mom told me that what I had done was inappropriate and that I needed "to learn to behave appropriately." It frustrated me that my parents seemed to think I was acting like this because I wanted to.

Don't get me wrong-- my parents were pretty pissed off at the teacher, but at the time they failed to grasp the reality of situations like the above. I had tried so many times over the years to explain that outbursts like these were the end result of trying to contain myself and the unbelievable anxiety I felt, but they never seemed to get it. Aside from the autism spectrum being mostly unknown, concepts like "chronic anxiety" were not topics of mainstream discussion. "Anxiety" was understood to be a momentary discomfort, not something that engulfed your entire life. I didn't even use the word "anxiety" to explain myself; rather, I often invoked a rush of adrenaline and the fight-or-flight response associated with it. I only even knew what these things were because Dad once told me about something he had read about them in college.

Years later, I found some notes Dad had taken when he called the school the following Monday to talk to the director of the Saturday program. Apparently the other teachers hadn't wanted me in their classes either.

This incident happened almost twenty-three years ago, and this type of issue that I had is largely under control. But the memory still hurts sometimes. It hurts because this was not the case of a teacher who was mean to everybody else also being mean to me. And the message that I got from the incident was one that I continued to get well into my adult life: That I am just "too much". I've been long expected to understand that I have had this kind of profound and negative effect on people that violates them in horrendous ways, and that their extreme reactions, while not ideal, are understandable under the circumstances. In fact, despite how upset my parents were with the teacher, they actually urged me to go back for the final class-- which I had no intention of doing-- because in doing so I would convey the message that I wanted to be "mature". That carries the implication that my teacher's response, while wrong, was not egregious. And no, I did not go back.

It also hurts because when I discussed this incident in autism groups in Facebook and asked if anybody had similar stories, all the "similar" stories I got were ones involving them as elementary school kids missing directions or crying in class only to get indignant hell from a teacher. None of them were stories about them in high school getting in trouble, let alone for saying something stupid. I suppose it's possible that they're just not writing about them because they're too embarrassed. But I get the impression that many of them learned early on that if they just shut up they would stay out of trouble. I don't know if it means that I was exceptionally bad at masking, that it was actually a sign that I was mentally stronger, a combination of the two, or neither.

I realize that we as a society have come lightyears since the '90s and that if this had happened today, there is a good possibility that the teacher would have been fired on the spot. But unfortunately, I was a teenager in the '90s and I have this story in my knapsack. It still hurts, and it's still confusing.

I still have the same self-doubts sometimes.

Lemons and Lemonade (or "The Silver Lining Around the Mushroom Cloud")

As always, names have been changed...
It's just about 5 months into this COVID-19 pandemic. Since then, Massachusetts, which has done a great job of containing the virus, has entered phase 3 of reopening. On July 5th, I took the subway (mask on, of course) for the first time since March, getting myself the hell out of Quincy and going to Cambridge to go swimming in an outdoor pool. The outdoor pools are open (at lower capacity), and so is the gym. While going to the pool at the gym or an outdoor public pool is not a risk-free activity, I feel it is one of the safer risks I can take because chlorine kills the virus. I've also recently gotten to see one of my friends who already had the virus in April. He had a high fever, which indicates a strong immune response, and thus some type of immunity developed in the end. My doctor confirmed that right now he likely has some immunity, though we don't know enough about COVID-19 to know how long it will last. So I felt comfortable seeing him. I've also extended my social circle a little and hung out with my cousins, who came for a visit from Providence.

This pandemic is frustrating to no end. Until there's a vaccine, it's hard to know what the future will hold, and I dread this winter when people will be forced inside and given more opportunities to spread the virus. Even now in the summer I feel a little anxiety of what's to come next. This is one of the most horrible things to have happened in The United States (maybe THE most horrible?), with more casualties than 9/11.

That said, it is also one of the best things that has happened to me. Before anybody decides to twist things around, reads the wrong thing into my statement, no, I am not saying how wonderful it is that we have a pandemic that has killed hundreds of thousands of people. Rather, I'm saying that there's a silver lining around this mushroom cloud, a lemons and lemonade kind of thing that's happened to me in its aftermath. For one thing, I am doing a lot of writing. I'm well into writing a novel. I've tried writing many different novels over the years, but have had structural problems and have found myself stuck after writing the beginning, or have ended up writing a crappy draft. This time is different. What is also great about developing this novel is that I'm writing with characters I came up with at the end of 1996, characters who I've tried over and over to get a story out of but have been unable to. Until now. I think I'm really going to do it this time.

Additionally, stuck in full quarantine in March, April, and May, my mind started to wander. I thought back to the summer of 1997. I remembered my group trip to Israel, where I had an obsessive, autistic-style crush on a counselor named Chuck, and how I chased him around like I was Pepe LePew. This severely disrupted my experience and left me embarrassed about my behavior for years. I have had a few brief, superficial communications with Chuck over the years (ICQ, email), and we've been on Facebook together since 2008. We never kept in touch in any meaningful sense of the term. But with my wandering mind, I decided to message him. We had a good conversation, and ended up Skyping-- twice.

During our first Skype chat, Chuck and I hit it off right away and had some interesting discussions-- it turns out we have quite a bit in common, including a shared interest in brain science. We had a few good laughs about the funny things that happened on the trip in the summer of 1997. We also talked very frankly about my embarrassing behavior. I said, "Yeah, I had a thing for you and I had the subtlety of a hand grenade about it. I was embarrassed about it for years." Chuck shrugged, laughed, and said, "You were a teenage girl. These things happen. I'd like to think I handled it well, but I'm sure sometimes I didn't." I told Chuck that I gave him a lot of credit, that while he didn't always handle it well, he did the best he could for a young guy working in an era where autism was virtually unheard of. Having this discussion with Chuck was very cathartic and gave me a lot of closure that I never really had about that rough period in my life. He lives nearby, and I look forward to meeting up with him, and I hope to also meet his wife and two kids. This, of course, will probably only happen after a vaccine is developed, or when Chuck is at least more comfortable expanding his social circle during the pandemic.

Chuck isn't the only person I've reconnected with. I reconnected with Jonas, my counselor at Camp Negev and friend and mentor throughout my teenage years. Oh yeah, and my first crush. Yeah, I tended to get crushes on counselors... wow, what a dork I was! Anyway, he and I had kind of a falling out in the spring of 2001, and I haven't seen him since then. Our communication was limited to the occasional email and Facebook comment. However, we cleared the air about what happened back in the day (which I really don't want to get into the details of right now). At first, Jonas was not sure it was a good idea to video chat, but a month later, after hearing me on an alumni section on a camp podcast, he changed his mind. A couple weeks ago, we talked on Zoom. We had some good laughs about camp memories, and we filled each other in on some of what we've been up to over the past 19 years. Jonas ended by saying, "Let's stay in touch." He lives thousands of miles away, but the next time he is in New York City visiting his in-laws (which I suspect will only happen after a vaccine is developed, so I think we're talking about at least a year), I will probably head down there to see him. I definitely look forward to meeting his kids (I already know his wife; she went to the same camp).

I also reconnected with Amelia, a close friend from my age group at Camp Negev. Like Chuck and Jonas, we had been on Facebook together for years but didn't have much communication. We had a nice Skype chat and, like in my chat with Jonas, we filled each other in on what we've been up to over the past several years. She lives in the south, so it'll be a while before I get to see her in real life. I hope she comes up to Boston at some point. Or, perhaps I'll go down there. We'll see. If nothing else, we're just about due for another Skype session.

In short, because of this pandemic, I've been writing like a madwoman and reconnecting with old friends (Jonas and Amelia) and acquaintances (Chuck-- now a friend? Not sure how he'd classify the relationship from Skype alone). This mushroom cloud has indeed had silver lining, and I've turned some lemons into lemonade.

With all the horror stories that have happened as a result of COVID-19, it's nice to be able to hear something positive. Let me know in the comments if you have similar "lemons and lemonade" stories that have happened as a result of this pandemic!

Somebody that I Used to Know (You Didn't Have to Cut Me Off)

            The Facebook events page boasted “Family Movie Night: Moana” in the Boston Commons.

Immediately, a vivid image formed in my head: Jen and Chris, a young mother and father in their mid-thirties, are leading their two children, aged five and seven, through Boston’s downtown park. Jen is holding one hand of each of her children. Chris is carrying two folding chairs for himself and his wife and two sleeping bags for the children. Jen is also carrying something—a third child, due in two months.

The five-year-old, Emma, carries her Moana doll. Dangling by the arm, the doll’s dress beginning to tear at the seams from hours of play with Emma and her best friend, Olivia, who also has a Moana doll. They’re long-lost twin sisters, was the compromise the two girls had agreed upon, as neither could be bothered to play the part of another character. The seven-year-old, Liam, is wearing his Maui T-shirt, Maui’s trademark words “You’re welcome!” splayed across the front, with Maui himself flashing his mischievous grin. Liam is carrying a toy of his own, in this case a plastic version Maui’s magic fishhook, which flashes lights and makes sounds when he swings it. Liam and his best friend, Noah, love to take turns pretending to be Maui and playing tricks on the neighborhood kids.

Family Movie Night will be a fun-filled experience for the children. Emma will love watching her favorite Disney Princess learn to sail and navigate the world, and Liam will crack up at Maui’s antics, such as when he pees in the ocean while Moana’s hand is dipped in the water.

Chris and Jen aren’t thinking about whether or not they will enjoy the movie: This outing is for their kids, and this movie is for kids. Tomorrow, Chris and Jen are going to meet with their neighbors, another married couple with young children. These parents will talk about how Ava has taken her first steps, and how Logan will be starting pre-school at the end of the summer. Then, the two families will meet yet another set of parents and their young children for lunch at Margarita’s in Waltham for a birthday lunch: their little boy, Elijah, is turning six tomorrow. And he is starting first grade in September.

            After lunch, they will go to the playground. The six parents will sit and talk about their children while said kids, all the best of friends, play together. They are children after, all, and childhood is a time when friendship exists without any significant barriers. Chris and Jen, however, are very selective as to who they allow in their social circle: They don’t have any friends who do not have children. In fact, when they got married, they severed contact with all their single friends. It was not a formal “parting of ways”; they simply stopped answering emails and phone calls from them, hoping that they would eventually get the hint. In fact, they didn’t invite them to the wedding or even accept their friend requests on Facebook. They kept their married friends around, assuming all of them would eventually have children. But when one couple remained childless after ten years, Chris and Jen excised them as well.  We’re in a different stage of our lives, they rationalized. We’ve outgrown these other people. If they don’t have children, then we have nothing in common with them.

            The Facebook page that advertised the Moana movie night was dated last summer, but I only saw the event page a couple months ago while searching to see if there was a showing of Moana in Boston: I hadn’t seen the movie in theaters, and I was hoping to see it on a “big screen” of some sort, perhaps with a friend. It had become one of my favorite movies after I first saw it last year, so of course I had to collect some of the merchandise: I have two Maui figures, one Moana figure, and Maui and Moana rag dolls; my laptop is covered with Moana stickers that came from the children’s picture books that I had bought (mostly for the superb illustrations). It turns out that in the first week of August, there will be a showing of Moana on Revere Beach. I will most certainly go, possibly alone, but one of my New York friends, who also loves that movie and who I’ve been needling to visit me, is going to see if she come that weekend.

If my friend and I go to this movie, no doubt we will be the anomaly among an audience of mostly young, isolated parents and their children, carrying Moana dolls and Maui’s magic fishhook. The kids in attendance are in the process of forming their identities, but little do they know that it is a temporary thing. Their parents have long ago left their own identities behind: they are no longer artists, writers, dancers, musicians, nerds, jocks, or any semblance of the personas that they had assumed while growing up. They are Parents, full stop. As they eventually learned, childhood isn’t a real thing; it’s not even a dress rehearsal for adult life. It’s a fake world created by the parents for the kids until they are old enough to marry and start a family. Life does not become real until you are married with kids and recreating the fake world for the next generation to inhabit for a couple decades. Those who never figure this out and don’t put away childish things have failed a major life test.

While I only came up with the details of the story just now as I wrote this, the general idea sprouted the moment I saw the ad for Family Movie Night: Isolated parents who had long ago seemingly stepped off a spaceship on another planet with exclusive membership, a holier-than-thou society where any adult who wasn’t married with children (or with the intention of having children) was an unperson, lightyears behind on an apparently linear, unidirectional trajectory of life and beneath them in every way. Why in the world did reading an ad for a showing of Moana trigger this vivid image in my head? Because I had been in a very dark place: My friend, Ryan, had gotten into a serious relationship and I hadn’t heard from him in months. He was blatantly ignoring my Facebook messages, and I kept thinking that it was due to of something like what I’ve just described: that he had “moved on” because he was at a stage in life that I have no way of knowing if I will ever enter.

A few nights ago, Ryan and I saw each other for the first time since January. We met for dinner and had a long talk about everything that had happened. It turned out that a message that I had sent Ryan in April, after we had briefly gotten back in touch, regarding concerns about the dynamics of our relationship was something that he had not been in an appropriate state of mind to address, as he had been overwhelmed by other things in his life. He also said that he had been realizing some things about himself that he didn’t want to face and that my message was yet another example being brought to his attention.

Ryan had meant to get back to me but the longer he put it off… the longer he put it off until ultimately it would’ve been too little too late, in his mind. He compared it to someone in debt who kept putting off paying bills until finally cutting his losses and declaring bankruptcy. Ryan had absolutely no idea how hurtful these actions were until one day when I messaged him with the direct question, “Are we still friends?”. He certainly didn’t realize how they made me second-guess myself and the way I’m hardwired and the way I live my life, feeling as though I’m a child: I’m demisexual (Google it), I don’t date, and I’ve never been in a relationship.  He realizes now that his behavior was hurtful and has since apologized. The two of us agreed to meet halfway on how we communicate; if Ryan doesn’t respond to messages right away, I’ll be patient, and in turn Ryan will acknowledge my messages but let me know if he’s too busy to talk or hang out.

Sure, you might say, people isolate themselves for a few months in the beginning of a relationship, but then when things calm down a bit, their friendships return to normal. Unfortunately, I did not have that kind of luxury to make that assumption about Ryan’s lack of communication, and for the few months that he and I had been out of touch, I was racking my brain trying to figure out why this was happening. I was also convinced that I would never see or even talk to him again. Because I have a history of friends ghosting me—such as in 2008, when Melanie, my best friend of sixteen years did not invite me to her wedding and completely cut me off  —my reflexive reaction is to assume that I have done something to make the other person angry, uncomfortable, or otherwise feel that the only possible way to handle the situation is to terminate all contact with me.

The situation with Melanie was very traumatic, and between that and Ryan’s lack of responsiveness, seeing that advertisement for Family Movie Night led to the above story being planted in my head. I have had similar embittered reactions when seeing this commercial and this commercial, both of which depict parenthood in an idyllic manner. Ever since the estrangement from Melanie, I reflexively think that in general I cannot—that is, I literally am not allowed—to be friends with people in relationships, let alone be friends with people who are married and have kids. If I met the right guy, sure, I probably would get married, or at least cohabitate. But as I’m demisexual, it’s not something that’s on my radar. I can literally count on my fingers the number of people I’ve been attracted to, and obviously my being attracted to that person is only half the equation: the other person has to reciprocate. Given that I experience attraction so infrequently to begin with, the chances of a mutual interest are very low.  And I absolutely do not want to have kids (I’d have to change my mind very quickly anyway, as I’m 37).

Why should my relative lack of interest in romance and sex and my decision not to have kids preclude me from being friends with people in serious relationships? When Melanie got married and cut me off, my mother told me that married couples usually cut off their single friends (she doesn’t recall putting it in those extreme terms, but I remember vividly that she did). She also said that when you get married it is a different stage of your life. Same as when you have kids. Although she has since retracted her statements excusing Melanie’s actions and has apologized profusely, it is difficult for me to forget. My vivid memory is both a blessing and a curse. Besides, I have heard that same mantra over and over again about “different stages” from a number of people. Some people have also called me “naïve”—a term that implies social immaturity—due to my inexperience in romantic and sexual relationships. Wouldn’t the more neutral “inexperienced” do? Apparently not, because the idea that experience with romance, sex, and the desire to have children make you an adult instead of one type of adult is so ingrained in our society. It’s as if life is a linear, unidirectional pathway with milestones that are objectively on a higher tier than others. Additionally, the idea that you can either be a married adult with children or be a proverbial child yourself is a false dichotomy, yet many people fail to realize that.

The notion that relationships, marriage, and children are “stages” is one that makes me cringe. In fact, recently, literally hours before Ryan responded to my “Are we still friends?” message, I was telling somebody at work about what was going on. I sought his advice because he was talking to me about his girlfriend and some of their shared friends. My coworker started with the damned “stages” mantra. I said, “No. Puberty is a stage. Old age is a stage. These are all stages that everybody goes through as long as they live long enough.” My coworker interrupted, saying, “Everybody also falls in love.” I said, “No. No they don’t. Just listen. I’ve never been in a relationship. It’s hard to say if I ever will be. It’s naïve to say that everybody falls in love.” I then explained to him what it means to be demisexual and also said, “And as for having kids? That’s not in my future.” My coworker has one hand that has only two digits. I wish I would thought to ask him how he would feel if someone had said to him, “Everybody has ten fingers.” It is frustrating when there are things that most people take for granted that are just not part of your own life.

As for Ryan, when we had our talk, I told him about the fears and second-guessing that plagued my mind during the months that we hadn’t spoken. Was he cutting me off?, I had wondered. If so, was it because I had never been in a relationship and that made me a child in his eyes? That was a notion that I had seriously entertained during those few months. I then confessed that I felt like an overgrown child. For example, when I’m at Target I might see parents buying Moana figures for their five-year-olds, and I’m there at age 37 buying these toys for myself: I haven’t left the fake world that adults create for children before boarding the spaceship and heading to the planet where real life begins.

Ryan commented that the idea that my sexuality, relationship status, and parent status should have any impact on who I can be friends with is ridiculous. He also said that he too sometimes feels like an overgrown child. For one thing, he likes things like action figures, children’s cartoons, and video games. Although already married once, he hasn’t had children yet and members of his family are pressuring him to remarry and have children. He told me that the fact that he hasn’t done this yet makes him feel like people see him as immature. I was floored when Ryan told me this. He’s 32 years old, and in 2018 being someone who wants to have kids and to have not had them yet at age 32 is increasingly common; my cousin had her first and only child just two months before her 39^th birthday. But Ryan’s family is from the south and, presumably, they have a more conservative outlook on life: Get married and have children by a certain age, because that’s what you’re supposed to do. But why? How does it affect his family members? These aren’t parents begging for grandchildren—his parents are deceased—and his two siblings already have children. So it’s unlikely a matter of pressure to continue the family name or to quell “baby fever” (not that anybody should pressure family to do this anyway) and more likely a question of what one has to do to be an adult.  It’s attitudes like this that fuel the cynical and embittered scenario like the one I opened this blog with.

Another scenario that kept coming into my mind over the course of the few months that Ryan and I hadn’t been speaking—partially because friends and family who I’d been talking to about this put it there—was that Ryan’s girlfriend perhaps had told Ryan she didn’t want him having opposite-sex friends. Initially, I dismissed the idea as ridiculous: In 2018? In Boston? And how threatening to their relationship would I, an androgynous, autistic, almost-asexual person, be? But since so many people suggested it, I truly began to believe it. What then? Should I stop making friends with heterosexual guys in case they get into relationships, because then they have to cut off their opposite-sex friends? And what if one partner of an opposite-sex relationship is bisexual? No friends for that person because everyone is a potential sex partners? Should I join the polyamorous community where there would likely be no politics involving the sex of the person you’re friends with? Ryan told me that this was another red herring: his girlfriend trusted him. She not only knows who I am but also knows that Ryan has several friends who are women. It’s not an issue.

What it ultimately came down to was that my message to Ryan about my concerns about our friendship was poorly-timed, and Ryan’s judgment of how to handle it was reckless. It had nothing to do with my sexuality, my lifestyle, Ryan’s girlfriend being territorial, or Ryan feeling like he was in a “different stage of his life” and that I was immature compared to him. While I know logically that anybody who writes me off as a friend because of my being single/childless childfree/anything else that precludes societal-expected adulthood is an ignorant person who is not worth my time, it’s difficult for me to put that into practice. The idea of somebody cutting off their single friends once they marry is cliché for a reason. After hearing stories like this so many times, having had it happen to me once and my fearing that it had happened to me yet again, eventually I begin to ask if I’m the one with the problem rather than conclude that a remarkable number of people are ignorant, inconsiderate, and limited.

I want to emphasize that when I talk about what happened with Melanie, my best friend of sixteen years, and what I thought was happening with Ryan, I am not talking about a natural, gradual drifting apart. I am talking about the sudden and deliberate excision of the other person from their life once they marry, an exclusionary action so severe that the former friends are not even connected on social media: Ten years ago, Melanie rejected my friend request on the then-popular MySpace (to my knowledge she is not on Facebook). I realize that when your friends marry and have children, of course you are not going to see them as frequently and that you have to adjust certain dynamics of the relationship. When my cousin Melinda had her child, I fully expected that whenever I hang out with Melinda her son will be there, at least until he is old enough to be alone more of the time. So I not only have adapted, but I have made an effort to establish a relationship with this child. He is only 3 years old, and I don’t think he’s seen me enough to recognize me. But when I do see him, I read to him and play with him, and not just because he is family either. I would adapt in this way even if a non-relative had a child.

Now, if only society would adapt a bit more.