Born in the Wrong Decade Part 2: Thoughtcrime

In the previous installment of this series, I talked about how by the age of nine I realized just how different my internal experiences were from the people around me. This was crystalized in my mind when Back to the Future became a focused interest and I felt a strong sense of shame and "wrongness" from the intensity of it. As my childhood continued, I developed focused interests in other movies and television shows, such as The Simpsons and The Addams Family. The shame gradually became less intense as I became more familiar with this pattern, but it was still there. Whenever a new focused interest grabbed my attention, I felt an impending sense of dread-- dread that I was becoming obsessed with something. 

I was aware of the term "obsession" by the time I was eleven, and I even recall how I learned it. My mother had made a passing comment about someone being "obsessed" with something. When I asked her what it meant, she said, "It means it's all the person thinks about or talks about." The negative subtext inherent in her explanation was clear: what could possibly be acceptable about someone thinking about and talking about only one thing? Growing up, I questioned a lot of the common wisdom inherent in society-- such as that it's somehow worse when a girl tells a dirty joke than when a boy does-- but for some reason I did not question the idea that "obsession" was a bad thing. Perhaps if I hadn't already felt a sense of shame before others began commenting on my propensity to hyperfocus on certain movies and television shows, I would have questioned it.

In an assignment for my English class during my Freshman year of college, I wrote about the overwhelm of emotions I felt the day after my introduction to the Back to the Future films at age nine, the urgent feeling of wanting to watch them again so badly. It was my first time writing about this moment in my past, which I looked back on with a lot of self-criticism: liberally using the word "obsession," which I described as "ludicrous." I wrote about my brother growing tired of my watching the films so often, and the undertone in my piece clearly implied that I had been responsible for his irritated reaction. Not once did it occur to me that if he was so put off by my viewing habits he could have just left the room instead of making it about me. I accepted that I was the Problem, and my obsession was the root. When I wrote this essay in 1999, I believed that I had overcome this "Problem". After all, if I hadn't, it meant I was immature, out of control, and perhaps even, somehow, unethical. Only recently has it occurred to me that it was fair to describe my brother's reaction as "immature"-- after all, he was a child, too.

The real Problem is that inherent in everything I describe is a lot of question begging: that is, I began with the conclusion that what other people called "obsession" was wrong and that it was something I needed to learn not to do, that it somehow violated them in an egregious manner. If someone told me I was "obsessed" with something, it meant I had failed in some way and I had to figure out how to fix the Problem. It honestly occurred to me only a few years ago that I was looking at this through the wrong end of the telescope. Ironically, it was because of a conversation I had with my mother, who has evolved in her thinking over the years, especially in light of how autism and its quirks are understood in the more-enlightened 21st century. She admitted that it simply took her a long time to understand my internal experience as a fan geek, and that there is nothing wrong with enjoying something with such an intense focus. While it is, of course, important to be mindful about whether the other person you are talking to is interested in the topic, that is a completely different issue than whether it is "wrong" for someone to be hyperfocused on something. More recently, I have realized that the only thing I was guilty of was the social "sin" of thoughtcrime. It is now clear to me just how pervasive societal shaming of "thoughtcrime" is.

Take being LGBTQIA+, for example. Up until very recently LGBTQIA+ people were expected by an overwhelming majority of society to hide their thoughts about same-sex attraction, feeling like they were a different gender than what the world perceived them as, and even a lack of interest in dating and sex. Yes, thoughts that people didn't have, or at least had less frequently than most of the world, were something to be hidden. This type of "thoughtcrime" can at least easily be explained by the fundamentalist Christian-based attitude that has shaped many parts of the world, including the United States, for centuries: any sex act other than the missionary position between one cis man and one cis woman is a sin against God. 

But what, then, of other "thoughtcrime," such as a focused interest on a movie? I think what it comes down to is people being unable to acknowledge their own discomfort around something they don't understand, even if it is not rooted in a social taboo such as non-hetero-cis-normative sexuality or gender identity. A lot of autistic fan geeks know this and, like me, have expressed frustration about people angrily telling them, "You're obsessed with that!" Additionally, I have observed a lot of quirks in other fan geeks (many of which I suspect are on the spectrum) that I don't understand, and I realize I need to be okay with not understanding. 

For example, a lot of fan fiction writers create stories where the main focus is graphic sex acts between their favorite characters. One popular "shipping"-- as such relationship-creating for these characters is called-- is Draco Malfoy and Harry Potter. I don't have an issue with someone writing about one or both of these characters coming out as gay, but why would they want to pair characters that hate each other? Why on earth is scene after scene of graphic sex the focus of these stories? A friend of mine, a fellow Back to the Future fan-- who is, incidentally, a phenomenal writer-- wrote a graphic story about Marty and Doc going at it (thankfully, Marty was written to be eighteen, the age of consent). I told this person, "I just read it. That was HILARIOUS!" and they said, "It wasn't meant to be funny." Well, I don't get it, and that's okay.

I don't know why so many fan fiction writers focus on stuff like this, and out of curiosity, I asked my friend about it. My friend said that they aren't "getting off" on it, but rather it's some type of "curiosity" for them, like they're watching to see where the scene will go. I suspect that other people actually are "getting off" on it, but I guess everyone is different. With the exception of a few sporadic and unremarkable attempts to write "how-Marty-met-Doc" origin stories, I don't write fan fiction. But even if I did, I can't imagine a time or a place where I would have written something like this. I've also come to realize that if I'm uncomfortable with others writing it, that's my problem. To make it about them is akin to policing thoughtcrime. Why do so many fan fiction writers create stuff like this? Does it matter? As long as they're not, say, stalking the actors who portrayed the characters, they're not hurting anybody. 

I guess what I've learned over the years is that people are just weirder and more complicated than we've historically acknowledged. More people are opening up about their quirks, essentially declaring that the emperor is naked. 

And the emperor IS naked.

Born in the Wrong Decade Part 1: Tears of a Baby Fan Geek

I have long told people that I was born in the wrong decade. 

I'd even go so far as to say the wrong century because, ideally, I wouldn't have been born any earlier than 2005.

Unfortunately, I was born in 1980, and the final two decades of my native century were not a welcoming era for autistic people, who were largely unidentified.

The world has come a long way since then, and the 21st century is far more enlightened. Today, autistic children of a variety of presentations are routinely identified, and adults who spent years thinking that they were "defective" are also able to find answers. I am one of those adults, diagnosed in spring of 2003 at age twenty-two.

I always knew there was something different about me, and between being a little kid and being a little kid in the 1980s, I didn't have the vocabulary or even the point of reference to describe what was somehow also excruciatingly clear. I constantly found myself feeling like I didn't belong, realizing that not only did people perceive me as "different" but also that my internal experiences diverged vastly from that of my family, my (few) friends, and my peers.

I began to realize with greater clarity just how unusual my internal experiences were when I was nine years old and saw the first two Back to the Future films for the first time, just after Back to the Future Part II was released. I saw both movies on the same day, and I was immediately hooked; it became my "focused interest"*. I was extremely fascinated with the idea of time travel, with the hoverboards in Part II, and with the wonderfully bizarre character of Doc Brown. Throughout my childhood, I had gotten very single-minded about other movies and television shows, so this was nothing new. But for some reason, my focus on Back to the Future was more intense than any I had ever experienced before. I recall the day after seeing the first two movies in the series that I wanted to watch them both again so badly that it practically hurt. It also saddened me somewhat that I would have to wait several months for Back to the Future Part II's release on video as well as the theatrical release of the already-promised Part III, a trailer for which was teased at the end of Part II. Although I was only nine, I knew that what I was experiencing was strange. I was aware that my parents and brother were no longer thinking about these movies and the fact that I was, let alone so intensely, was odd. It didn't take long before I began to feel like there was something wrong with me, and I quickly grew self-conscious about this unknown weird thing that was going on in my head. 

My self-consciousness about my focus on Back to the Future reached the point that I would break out into a sweat if I overheard someone talking about it. I was acutely aware, too, that this physiological reaction was abnormal. To this day, I don't know why it happened. When I tell people about this, I often end up saying, "I can't even explain it; it's like trying to describe what the 5th dimension looks like." However, my suspicion is that I felt like I had been "found out," for lack of a better way of putting it. The more this internal turmoil unfolded, the more I felt like I was harboring a shameful secret that I shouldn't reveal to anybody. I hate the word "obsession," but even then I didn't at least have that word to describe what I was feeling.

My self-consciousness about this Weird Thing in My Head reached a point where I was waging war against my own brain: One part of my brain "wanted" to think about, talk about -- and watch-- Back to the Future all the time, but another part of my brain said, "No, this isn't right. You need to hide this." Back then I managed to rarely bring it up in conversation, probably because my self-consciousness stopped me from doing so (This would sound strange to people who know me today, as I have since mostly stopped caring what people think, and talk openly about whatever interests me-- Back to the Future or otherwise-- no matter how intense the focused interest is.**). I ultimately made a compromise with the two conflicting parts of my brain: I would only watch movies in the Back to the Future series every three months. In my nine-year-old mind, that was infrequent enough not to arouse suspicion of my family, lest they think there was something wrong with me. Of course, three-month intervals seemed a lot longer to me than to other people, and my older brother had no problem drawing attention to this reality when walking in on me watching the films: "This again?" he'd quip with a pronounced roll of his eyes. 

After Back to the Future Part III at last arrived in theaters, I was once again in the position of having to wait several months for it to come out on video. The eventual video release was, unfortunately, on the weekend of the Bar Mitzvah of the son of a family friend. I recall asking my mother if we could rent the movie after the Bar Mitzvah. "We'll see," she had said. At the service and the party that followed, it was all I could think about. Once again, I was engaged in warfare with dueling mindsets: the one that wanted so badly to watch this movie again, and the one that was aware that I was at an important event and that wanting to leave was inappropriate. During the party, I asked Mom if we were going back to the house of the Bar Mitzvah boy's family. I felt that it was wrong to want to leave just to watch a movie, so when I repeatedly asked my mom if we were going back to the family's house-- we hadn't decided yet-- I made it sound like I wanted to go. I think part of me also wanted to convince myself that this was true. I also recall repeatedly finding one of my parents and asking what time it was so that I could have an idea of how long it would be until I could finally watch Back to the Future Part III again; I normally wore a watch, but as it was a digital sports watch, it was deemed too casual for this event.  

We did end up going back to the family's house after the Bar Mitzvah party. I was acutely aware of the passing time, knowing that the video store could close before we got home. I suppose by then I had surrendered to the whims of the part of my brain that I tried unsuccessfully to silence, because I told my parents I needed to get home and do my Sunday School homework for the next day. It wasn't entirely a lie; it wasn't done, but I rarely did my Sunday School homework anyway. My intent, of course, was to be able to go home and rent Back to the Future Part III. I think at some point one of my parents commented that I should have thought about that during the week. Eventually, I was frustrated that my ploy didn't work and wracked with guilt for lying to them-- I was also wracked with guilt about my hyperfocus. I've always hated lying, and I realized that I needed to confess my true motives. Following my mother upstairs (I have no recollection of why she was going up there), I told her the truth. She made a noise of disgust. Already ashamed of myself, I wasn't sure how to react, so I said, "You're angry?", but in a tone that made the question sound more like a statement. The next two seconds, where I looked aimlessly around the room, seemed much longer. Finally, she broke the awkward silence and said, "I'm disappointed. I can't believe you would give up someone's good time just for a movie." I was already self-conscious about my hyperfocus on Back to the Future, and hearing the disapproval from my own mother further cemented the idea in my head that it was wrong.

Keep in mind that I was nine and ten years old when I was going through all of this. Was my focus on Back to the Future a bit extreme? Sure. Was it out of the realm of some of the weird things kids do? Not if they're autistic. But I think the level of self-awareness and self-consciousness I felt about it-- especially to the point of the mental warfare and guilt coursing through my mind-- is unusual for a kid that age. I had absolutely no point of reference for what was going on, and, as all of this happened between 1989 and 1990, neither did my parents. Had I grown up in the 21st century, I could have avoided this inner turmoil, these feelings of having committed some protracted abstract thoughtcrime. In terms of the situation at the Bar Mitzvah, a parent raising an identified autistic kid today would have responded to my confession with something like, "I understand that you're disappointed. But you will watch the movie again. You just have to be patient. Let's make a family movie night of it next week and we'll all watch it together," rather than reprimanding me for something that, unbeknownst to my mother, I was trying in vain to control. A parent today might even say to the kid, "I know it's hard to wait, and I know that this gathering here might be overwhelming for you. Why don't you go off in another room and draw the characters, or write a story about them? Won't that be a fun thing to do before you can see the movie again?"

I would also like to point out that I think my mother might have been reacting to my confession with some level of unconscious bias. How many times do ten-year-old boys-- ten year old neurotypical boys-- complain about how boring some event is that their parents dragged them to and say they want to go home and play video games? I think that people expect girls, even little girls, to be sensitive to the needs of others in social situations. I feel like things such as focused interests typical of autistic people are largely more tolerated in boys, just as are social imperfections. It is true now, and it certainly was truer back then.

What it really comes down to is that I was an undiagnosed autistic who, like a lot of kids on the spectrum-- especially girls-- was in the process of growing up to be a fan geek. Just so there's no confusion, my distress over my focused interest in Back to the Future wasn't caused by the interest itself, or even its intensity, but rather by my own perception that it was wrong, which was compounded by people's reactions to me. Unfortunately, to this day I still am occasionally at the receiving end of aggressive and dismissive accusations to the tune of, "Julie, you're obsessed with that!", and my childhood self-consciousness resurfaces. Some people in my generation still don't yet understand the reality of what it is to be autistic and thus react with 20th century sensibilities.

I was truly born in the wrong decade, the wrong century. Even being born in 1990 instead of 1980 would've been an improvement in terms of the kind of childhood I would've had, but what a universe of difference it would've been had I been born in or around 2005. Experiences like mine are no longer unheard of, and are less frequently ones that people believe they have to feel shame about. In fact, thanks to the Internet, highly-focused autistic fan geeks regularly find each other online and have in-depth discussions about their favorite books, movies, and television shows. They post fan art, write fan fiction, and intensely debate how to interpret certain scenes of their favorite stories. Had I grown up in this more enlightened and open era, I would've been spared accusations-- from others and from my own tormented brain-- of what amounts to the absurd social sin of "thoughtcrime."

"Thoughtcrime" will be the subject of the next post in this series.

*I find the oft-used term, "special interest" for the subjects of intense focus of autistic people to be patronizing and infantilizing. I also abhor the word "obsession." I would like to propose the term "focused interest" as an alternative to both of these.

**Yes, I realize that I should be mindful about whether the other person is interested in talking about any of my focused interests, and if the person tells me that they aren't interested, I'm happy to change the subject.

All Things Must Pass

A couple weeks ago, a post in my social media feed quickly caught my attention. 

Alan Arkin was dead. 

After confirming the veracity of the announcement, I posted on Facebook, "Oh my God. Alan Arkin died," and punctuated the news with a "sad" emoji. Acquaintances, friends, and family responded with condolences that would have suggested to the casual observer that I had just announced the death of a close friend. But I didn't know Alan Arkin. In fact, I had never even met him. However, it would be dishonest for me to say that I didn't feel some sense of loss.

While I didn't mourn Alan Arkin's death in the way someone close to him would (I didn't even cry about it), I did feel the sense that this new reality was something I would need to make an effort to accept. For the past thirty years, I have harbored a deep amount of respect and admiration for Alan Arkin not just as an actor, but as a human being. My appreciation of his unique qualities has only evolved since I first discovered his work at the age of twelve. As an adolescent with grandiose dreams of working in the entertainment industry (in my case, as an animator) his dedication, focus, and passion for his work fascinated and inspired me. As a teenager and continuing into adulthood, I grew to appreciate his intelligence, forthrightness, and pointed observations about humanity.

I first discovered Alan Arkin in August of 1993 during a 5:15 AM airing of the Cold War-era classic The Russians are Coming! The Russians are Coming! While darkness loomed outside and the rest of my family slept, I watched one of the main characters in the film in deep fascination. A mustachioed Russian naval officer in a black leather jacket crept around an island off the coast of Massachusetts in search of a boat to dislodge a submarine that had run aground. He nervously poked his head around corners, groaned comically as a window closed on him as he tried to climb through it, growled in exasperation, barked frustrated orders in Russian at the other sailors, and threatened to shoot members of an American family "to small pieces". The quirkiness appealed to me. Even for this type of character, he was portrayed in a manner that was refreshing and unusual. I had no idea who his actor was, and I didn't recognize him from any other films. 

"Who is this guy?" I wondered. "He's funny. How does he do what he does in this movie? Is he still alive? If so, is he still making movies?" I later found out that the actor's name was Alan Arkin and that both of my parents had already long enjoyed his work. He was still performing, and I learned that he had portrayed the father in Edward Scissorhands and the mechanic in The Rocketeer, both films that many kids my age had seen. Although somewhat popular among members of my parents' generation, his name was virtually unknown among mine because he was not the type of actor that would typically appeal to adolescents and teenagers.  He was neither a twenty-something sex symbol like Jason Priestely for adolescent girls to drool over, nor a hotshot like Arnold Schwarzenegger for boys to cheer on in action movies. Rather, Alan Arkin was a balding sixty-year-old who, as I would learn years later, approached acting as an art form and not a way to appeal to the masses; he couldn't have cared less about popular culture. 

About a year after I first discovered The Russians are Coming!, I read an article about Alan Arkin in the 1967 edition of Current Biography. I was captivated by the fact that he had been determined to become an actor since the age of five. It seemed that his dream encompassed every facet of his life: as a little boy, he even once announced to his playmates, "Let's play circus. I'll be everything." I found this degree of intense focus relatable; I was passionate about storytelling in the form of animation and writing, and I often locked myself in my room for several hours to do both. I greatly admired Alan Arkin's passion and drive, and was also impressed that he wrote children's books and taught himself how to play several musical instruments. He was obviously interested in a lot of different art forms, and he even stated that always having a project to work on was important to him. I saw Alan Arkin as a role model, someone who I looked up to and wanted to emulate, feelings that my mother incorrectly interpreted as me having a crush on him-- but I suppose that's what mothers do.

Finally, in December of 1994, I wrote Alan Arkin a letter. Although I wasn't planning on pursuing a career as an actor, acting was one of my hobbies and I wanted to try out for my school's upcoming production of Guys and Dolls. I asked Arkin for advice on this as well as what guidance he'd give to young actors in general. Although I knew logically that I should not hold out any hope that he would write back, I was still deeply invested in the possibility, a type of intense focus typical of me as someone on the autism spectrum. After a while it seemed like I was never going to get a response, and I felt stupid for caring so much about receiving one. However, in February of 1995, just as I was beginning to accept that my communication would go unanswered, I received a reply. I still remember with great clarity the rush I felt when I opened the mailbox that day and saw "A. ARKIN" handwritten on the return address.  Rather than a generic, impersonal letter that one might expect from a busy actor, Alan Arkin's response was filled with kindness, honesty, sincerity, encouragement, and humor. I knew that I would always value the letter, and I have since kept it safe in a long manilla envelope. Today, I treasure it more than ever. 

I have recently come to realize that Alan Arkin is the rare example of a celebrity that I only have a higher opinion of the more I learn. Listening to him speak about acting as well as various social and political issues betrays a high intelligence and an intellectual side. I have also heard stories that speak to him as a person of high integrity. On the set of Going in Style, Arkin's co-star Morgan Freeman tried to look up the skirt of one of the female production assistants-- that is, until Alan Arkin stepped in and told him to stop. Abigail Breslin of Little Miss Sunshine fame related stories on Instagram from when she was a child, about how he was always looking out for her on the set of the movie. For example, he once ordered "cut" and shouted, "Get her mother!" when he misinterpreted her crying as genuine distress rather than acting. 

I think about my evolution of respect for Alan Arkin over various stages of my life. My admiration for him as a diverse and well-rounded individual is now a long cry from the simple "Who is this guy? He's funny!" thoughts I had as a twelve-year-old back in the summer of 1993. I grew to see and appreciate-- albeit admittedly from a distance-- the kind of versatile, intelligent, and ethical man that he was. I posted on social media, "I am so overwhelmed with respect for this guy. What a role model Alan Arkin is to the world-- as a human being and as an actor." I still can't believe that he's dead and, as I said before, I do feel some sense of loss. 

All things must pass, but Alan Arkin's memory will live on.

The Art of Finding a Therapist

As always, names are changed-- names for my good therapists, and mischievous nicknames for some pretty bad therapists.

"Oren would have some good advice for me on this," I often say to myself when I am having a difficult moment.

But then I remember that I am no longer working with Oren. 

An undisclosed medical condition forced Oren into sudden retirement in June, and after six years of working with him-- the longest I have worked with any therapist-- I found myself having to find someone else.

I have been to several therapists since age eleven, some of which were psychologists, and others who, like Oren, were licensed clinical social workers (LCSW). The past thirty years of on-and-off therapy have taught me some valuable lessons, not the least of which is that finding a good therapist is an art. In a sea of "just okay" and bad shrinks, I have had three terrific ones, including Oren. I started working with a psychologist named Dr. Peters in June, but I'm considering looking for someone else if something doesn't click in the next couple months. She is nice and open-minded enough, and in the beginning I was feeling optimistic about her. However, I have since begun to feel that things aren't clicking as well as I hoped they would. For one thing, I am not convinced that she is intimately familiar with the nuances of autism, particularly in terms of what it generally looks like in cis women*. For another, I find that she often misses my point. Plus, she will often ask me a question right after I say something that contains the answer that she is looking for. For example, I might tell her that I have known somebody for twenty years, and two seconds later she will ask, "How long have you known this person?" It makes me feel like that she isn't listening, or at least isn't completely processing what I tell her, let alone appreciate where I'm coming from.

What was great about Oren is that he knows what autism looks like, including in cis women*. Unlike an alarming number of the psychological community, he knows it is a varied, colorful, complex, and nuanced spectrum, well beyond the stereotype of train-spotting, hyperliteral, STEM-genius cis men. In fact, on the day that I first met him, he said that he knew after speaking to me for about a minute that I was neuroatypical-- he has that kind of radar for autism, picking up on more subtle, less stereotypical cases like mine. After talking to him for about ten minutes, he also commented, "What I am hearing is someone who has experienced a great deal of loss." These comments clearly reflected someone who is highly knowledgable about autism as well as someone who quickly picked up on a common denominator in the stories I related. 

Oren was also good at validating my feelings while trying to help me sort through them. Sometimes I would tell him a story about a memory from my teenage years in the 1990s that had come back to haunt me, and I would say, "I feel like even among the autism community I have stories about traumatic interactions that are really unusual." He would tell me, "Believe me, this isn't anything I haven't heard before from an autistic person" and he would elaborate. You name the esoteric experience, he's heard about it at least once and often has some great insight into it. Sometimes, he would also ask me very disarming questions that would make me rethink my perspectives on certain issues. After getting to know me, it was also easier for him to contextualize any new information I gave him.

And finally-- and this is not a trivial issue-- Oren laughed at my weird, gallows sense of humor. And that's important.

Aside from the importance of finding a therapist who understands your situation, it is important that this person is interested in little anecdotes about something fun you did over the weekend and appreciates your sense of humor. After all, if you're working with a therapist once a week, you are not going to have something "bad" to talk about every week-- sometimes not even for months at a time. Why should you? And being able to have everyday discussions with and laugh with your shrink is important. It helps them to see the whole person, and not just where things aren't working. Plus, it helps you feel more comfortable working with them. 

I have had only two therapists besides Oren who I really clicked with. The first one was Dr. Fried, a psychologist I saw during my senior year of high school. He was the second shrink I had been to, after my shrink that I saw in elementary school whom I have since dubbed Dr. Bonehead (more on him in a bit). After the first or second session together, he commented, "You're a very intense person." Just like Oren he spotted a common denominator right away. The other one, a LCSW named Molly, was someone I saw in my late twenties when living in New York City. Like Dr. Fried and Oren, she was able to appreciate where I was coming from and help me to understand my feelings. She helped me to come to terms with a painful personal loss of two friends who had recently ghosted me (this was in 2008, one of the worst years of my adult life).

Dr. Peters doesn't seem to be fitting all of these requirements. She enjoys listening to my anecdotes and laughs at my jokes but, as I've said, I'm not convinced she fully appreciates just what autism is and can be, and I feel her listening skills leave something to be desired. I don't think she's a "bad" therapist, but she might not be a good fit. I have had some "just okay" therapists as well as some awful ones, and I want to share a few stories to help my readers understand just how clueless and even inappropriate (nothing sexual in my case; don't worry) they can be, and that there's nothing wrong with looking for someone else if the shrink you're seeing doesn't seem to be helping. To make things easier to follow (and more amusing), I have given each of these therapists a mischievous nickname:

Dr. Bonehead: My first therapist, whom I saw between 1992-1995, ages 11-14. Nobody knew what autism was in the '90s beyond the Rainman stereotype, so I wasn't diagnosed. Dr. Bonehead meant well, but he didn't understand me at all. He told me I overreacted to the chronic bullying I experienced, he analyzed things that had no deep meaning, and he often expressed shock at my gallows sense of humor. And he seemed to think a good "cure" for my social deficits was to sit two feet away from me on the couch instead of sitting on the other side of the room. Hey, "normal" people would feel a little uncomfortable, but since I wasn't "normal," I guess he thought the answer was to throw me in the proverbial deep end and hope I'd swim. Oh, and he once told me my hair was sexy. While I don't think he "meant" anything by it (he had three years in which he could have touched me, and he never did-- not even a harmless pat on the shoulder), it was still inappropriate and, sadly, reflective of the culture back then when it was considered okay for thirty-something-year-old men to "compliment" adolescent girls like that. Again, I don't think he was trying to do something inappropriate; I think he was just clueless-- in many ways.

Dr. Uh-Huh: I saw this guy in my late twenties, in Brooklyn, for a few months before I started seeing Dr. G. I would tell him stories and he would just go, "Uh huh. Uh huh." I would ask him for some insight, and he would just shrug. Brilliant guy.

The Drama Queen: I saw her in Boston for a few months in 2014. She was inordinately convinced that I was harboring a repressed memory, which is just absurd because my episodic memory is better than most people's (Oren said he has only worked with one other person in 45 years with a memory like mine). I have no trouble remembering traumatic experiences either, so I don't know where she was getting this. She also insisted that certain things in my life-- such as some drama in my extended family, which only came up because she actually had me make her a detailed family tree for some reason-- had a significant effect on me when I knew damn well it didn't. The family drama involved relatives I barely knew, and while I felt bad for my parents, who were at the receiving end of it, it had very little to do with me. These kinds of assertions felt like gaslighting. Additionally, The Drama Queen was Jewish, and she started asking personal questions to ascertain if I was "really" Jewish (that is, was my mother "born" Jewish? Nope, she converted-- I could see the wheels turning in her head when I revealed that). This is not just inappropriate, but irrelevant. Oh, and when I told her I was going to see cognitive psychologist Steven Pinker at an event to promote his new book, she said, "Maybe we can go together." Uhhh, that's a hard "no." Psychologists aren't supposed to interact with their patients outside of a professional setting. 

The bottom line is that finding a good therapist is an art. It takes time, and sometimes you need to try several before you find one that clicks. There is nothing wrong with that. Sometimes they aren't a good fit, and sometimes they are just bad. And if you, like me, are a woman on the autism spectrum-- which sadly isn't very well-understood in much of the psychological community-- it can be like finding a needle in a haystack. My father said it best-- finding a good doctor of any kind, but particularly a therapist, is like trying to find a good mechanic. You can take your car to several mechanics who say, "I don't know what to tell you." And then one day you take it to someone else who takes one look and says, "Oh, I know what's going on."

Sometimes, you just need to keep looking when your therapist isn't working out. And there's nothing wrong with that.

*This is a very in-depth topic, and well beyond the scope of this blog post. But let's just say that even a lot of the psychological community remains ignorant of the different presentations of autism.

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. 

Clinical Detachment = Lack of Empathy?

One tired myth that I have encountered repeatedly is that autistic people lack empathy. This seems to be fueled by the perception that when many of us hear about a tragedy or witness a disturbing scene, we don't broadcast the expected visceral reaction. 

Consider the following hypothetical scenario: in the days following 9/11, 15-year-old Emma's parents watched in horror as news networks repeatedly aired footage of the second plane hitting the South Tower. Emma's mother broke down crying. Emma's father cringed and said, "I can't watch this anymore," and left the room. Emma, however, said nothing. Her concerned mother turned to her and said, "Emma, isn't what happened just awful?" Emma responded with a slight shrug. Her mother was horrified at this reaction. In 2001, autism wasn't as well-understood as it is now, and Emma's shrug might have been perceived as a cold, unempathetic, "All those people died? Who cares?"

There are a few possibilities as to what actually was going through Emma's mind: Sure, she could have genuinely not cared about the deaths of 3000 people, but if that were the case, then that is not autism-related and stems from a separate issue. Another possibility is one that I hear from a lot of people in the autism community: that when something this intense happens, they are so overwhelmed with emotion that they don't have the presence of mind to respond in ways that people expect. They just shut down, and others perceive this reaction is one devoid of empathy. 

There is one other possibility that I'd like to explore in depth, and that is that the person is experiencing clinical detachment. Before I continue, I want to emphasize that responding with clinical detachment is not the same as not caring. Rather, it is taking an analytical approach to the situation. While Emma might not have had a visceral reaction to the idea of thousands of people dying in a terrorist attack, she still thought it was horrible and wanted to understand why it happened. What would possess someone not only to kill thousands of people but kill oneself in the process? What would make someone literally throw their life away in the name of an ideology and take others down with them? In fact, Emma might have even gone online to every news site to learn about the hijackers and Al-Qaida. She would have done so not amid tears, but amid a thirst for knowledge and understanding. Unfortunately, in the age that this story takes place in, Emma's mother might have thought that she had some kind of morbid fascination with death and took perverse joy in tragedy.

Fortunately, in the years since 9/11, there has been an impressive growth in societal understanding of autism. However, I want to point out that this sort of clinical detachment that Emma experienced in my example is not unique to people on the spectrum. In that particular context, possibly, but neurotypical people demonstrate clinical detachment in all sorts of contexts. The difference is nobody freaks out about it because neurotypical people aren't already perceived as "different". And like it or not, a certain amount of clinical detachment is absolutely necessary for all sorts of tasks. 

It's an inconvenient truth that people who research 9/11-- or Columbine, or the Holocaust, or the Crusades, or some other violent episode of world history-- have to do so with clinical detachment. And I'm glad that some people are able to do it, otherwise none of this important research would get done because researchers would be too busy dealing with their emotions. Clinical detachment is also necessary when performing surgery or conducting an autopsy. It doesn't mean that the surgeon doesn't care about the patient or that the pathologist is glad that the person they're examining is dead. It just means that they don't experience the emotions of empathy in an overwhelming or visceral way. And I'm glad they don't. Could you imagine a heart surgeon doing a bypass operation while thinking, "Oh my God, this poor man! If he dies, he's going to leave behind a wife and kids. I'm crying just thinking about it!" The surgeon wouldn't be able to concentrate on the task. 

I actually wonder if the ability to deal with looking at "gross" images, whether or not they are in the context of a tragedy, is correlated with the ability to experience disturbing images with clinical detachment, or at least without having a significant visceral reaction. I see an interesting range of differences of reactions in my own family. My dad and I can watch medical documentaries that involve graphic surgeries without even flinching. Not only that, we find them interesting. And I will even admit that I have a collection of "creepy medical photos"-- organs during surgery, microscopic photos of scabs, etc.-- that I pulled off the Internet. I showed some of them to Dad and he thought they were interesting. He also thought it was interesting when I showed him a picture of YouTube celebrity Matt Dillahunty's heart that his surgeons took photos of (at his request) when he had a triple bypass. 

My mom and brother, on the other hand? As soon as I showed them the picture of Matt Dillahunty's heart, both cringed. Neither of them can watch medical documentaries like Dad and I can; they just can't stand the sight of exposed organs and knives cutting into flesh. Here's what's interesting that supports my hypothesis about the correlation between the ability to watch surgeries and look at disturbing images-- but only partially: Dad and I can both watch the footage of the second plane hitting the South Tower on 9/11 without cringing. My mother, predictably, cannot. It's just too emotionally painful for her. My brother? He can watch it. Go figure.

And it isn't that Dad and I don't have our cutoff points. We do. I get an uncomfortable chill when I see footage of people jumping to their deaths from the Twin Towers on 9/11. I'm not sure what, if any, visceral reaction Dad has. But I do know that he has a seemingly-arbitrary hangup about amputations. I have a very dark sense of humor, and I once made a joke about a limb amputation (I don't remember what the joke was and what the context was in which I told it). Dad cringed, saying he couldn't even listen to me joke about it. I'm not sure if he can watch limb amputation surgery in a medical documentary, or if it's specifically violent or accidental amputation that he has a hangup with. I found recently, too, that I have a hangup with violent amputation. I was watching the psychological thriller Netflix series You, and in one scene, the main character, Joe, is assaulted and one of his fingers is cut off. In another scene, he cuts off his own toes as part of a plan to fake his own death. In both scenes, I surprised myself by cringing in a very visceral way. I actually curled my fingers and toes, as if recoiling from knives. Watching both scenes was a very unpleasant experience, and I just wanted them to end!

I think what it comes down to is that human emotion exists on a spectrum, and reactions to extreme imagery will range from clinical detachment (with a few exceptions, as with Dad and me) to pronounced visceral reactions (as with Mom and, to a lesser extent, my brother). I really feel that it's important to keep in mind that this range is present through all of humanity, autistic or not. It's just that when an autistic person-- particularly a girl or woman, in my experience-- doesn't display a pronounced reaction to certain images, people read deeply into it. It is here that I encourage you to check your own biases. Additionally, I strongly suspect that many neurotypical people fake certain visceral reactions because they know that this is what is expected of them. And I'm sure you know that we on the spectrum are often terrible at such fakery.

Bottom line, a certain level of clinical detachment is necessary in some contexts-- and humanity is all the richer and better for it.

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?