Tuesday, January 16, 2024

Lessons About Meltdowns-- From My Cat

I wasn't sure what to expect when I brought my cat, Neptune, to my parents' house in Pennsylvania over this past Thanksgiving and Christmas. After all, he was sixteen years old, and he hadn't been to that house in ten years. Would he even remember it? However, I had to bring him with me: he has hyperthyroidism and needs to get a pill twice a day, and getting a cat sitter or boarding him (the latter of which I think would traumatize him) would have been prohibitively expensive.

What I didn't expect were the erratic behavioral episodes that Neptune had during both stays. One minute, he would seem fine, and the next he would growl and hiss in warning, not letting anybody-- including me-- near him. There were a couple instances where it was clear to me what he was reacting to. Once, my dad tripped over a chair in the dark and howled in pain, and Neptune was right there; Neptune obviously thought Dad was attacking him. There was another instance in which Neptune hid under the kitchen table and growled while the four of us sat down for dinner. The room has a twelve-foot ceiling, and I think the loud and unfamiliar sounds-- such as the clanging of the pots and dishes-- plus the approaching feet made him feel cornered. But there were many other instances that seemed to come out of nowhere. 

I had never seen Neptune act like this before-- not in the previous times he visited the house in his younger years, and certainly not in my apartment. During his stay in Pennsylvania, I didn't know what to expect from him. One minute, I could be petting him and he would purr; the next minute, he might growl, hiss, and swipe at my eyes if I got too close. My attempts to diffuse the situation only made things worse. Telling him, "It's okay, sweetheart," made him angrier and more aggressive. Scolding him and yelling at him didn't work either. What we eventually figured out was that ignoring him during these episodes was the only thing that was effective. If we did that, he was usually back to normal in five minutes.

Sound familiar?

Someone I talk to online, who suspects she herself is autistic, told me to think of Neptune's episodes like an autistic person having a meltdown. This made sense to me. Cats-- like some autistic people-- rely heavily on routine and familiarity. Unlike dogs, cats are by and large not novelty-seeking animals, and unfamiliar situations-- especially with excess noise-- can frighten them. This is especially true for older cats, like Neptune. I realized that the way we tried to handle Neptune's "meltdowns" were eerily similar to how the adults in my life tried to handle my meltdowns when I was a kid-- that is, they backfired spectacularly.

Adults saying, "It's okay, sweetie!" did not work. It made me more upset.

Adults saying, "You need to calm down," did not work. It made me more upset.

Adults saying, "You're acting like a two-year old," did not work. It made me more upset.

Adults saying, "You need to learn to control your temper!" or sometimes, "You need to learn to control your fucking temper!"-- Guess what? -- Did. Not. Work. It. Made. Me. More. Upset.

Am I making myself clear?

The problem was was that the adults unsympathetically viewed my meltdowns as childish temper tantrums rather than a manifestation of protracted intense anxiety, often over being left out of something, or feeling I didn't understand a situation, or otherwise having the acute awareness of being an outsider. For other autistic people, this may happen as the result of sensory overload, for example (I don't have the sensory issues, but many of us do). Overall, it is the result of trying to tolerate living in a world not willing to understand us, let alone accommodate us. I tried several times throughout my teenage years and into my twenties to explain to the adults in my life that my "tantrums" or "outbursts" (or some other label with a shameful connotation) were the end result of me trying to dam a raging river, the inevitable outcome being that the dam would burst. Unfortunately, they generally thought I was making excuses, not trying, trying to get attention, or just being "immature." Needless to say, I would feel like I lacked self-discipline, that I committed some horrible moral failing, and I would feel a sense of deep shame. I would vow to never let it happen again, while deep down knowing that it was only a matter of time.

So what does the situation with Neptune have to do with it? A lot, actually. Like it or not, people are animals too. The difference is is that a cat seeing another cat having a meltdown would react with aggression, and you cannot do anything about it. They're acting on pure instinct. However, as a more intelligent animal, humans can help each other to understand what is going on. They can make accommodations and help the person having the meltdown (after it's over) strategize what to do when they feel one coming on before it reaches the point of no return. Most importantly, in the case of Neptune and the case of me and others like me, these episodes have to do with anxiety, not maliciousness. When Neptune is in an environment where he's comfortable, he's as sweet as can be.

I said that ignoring Neptune's warning growls and hisses rather than facing them was the right thing to do. Obviously, this is because you can't have a conversation with an animal. You can-- and should-- have a conversation with an autistic person about their meltdowns-- rather than ignoring them, which could feel disrespectful-- but the point is that you should do it after the episode is over and the person has calmed down. It might help to say, "I understand this is hard for you right now. When you start to feel better, come to me and we can talk about this," or at least get them out of the situation that's bothering them so that they can calm down. 

I feel that I should further explain why addressing the meltdown in the moment makes things worse, even when "nice" words are used:

When an adult said, "It's okay, sweetie," what I heard was a sugar-coated way of saying, "You're overreacting and I have no concept of what you're upset about."

When an adult said, "You need to calm down," what I heard was, "Your emotions are making me uncomfortable and I don't want to deal with them."

When an adult said, "You're acting like a two-year-old..." God, did I hate this. I remember even trying to explain that two-year-olds don't have complex enough emotions to get upset about the stuff I was getting upset about. Thus, what I heard was, "We don't understand anything you're telling us, and your feelings about the situation are invalid."

And when an adult said, "You need to learn to control your (fucking) temper!" what I heard was, "I can't stand to watch you act like this. It's making me unbelievably uncomfortable and it needs to stop. This is about my needs, and yours don't matter."

What I realize now is that, whether adults meant to do it or not, they were making the situation entirely about me rather than owning their own discomfort and lack of understanding.

Keeping Neptune comfortable in whatever environment he is in helps to prevent his episodes. Remaining calm during his episodes when they do happen prevents them from escalating. 

And really, people are not much different.

Thursday, December 7, 2023

"More Musings About Having Been Born in the Wrong Decade" or "How to Raise Your Consciousness"

For those of you who read my Born in the Wrong Decade series that I posted last month, I have some more thoughts about an incident I wrote about in the first installment of the series. 

If you recall, I talked about being very self-conscious about my focused interest in Back to the Future, which started when I was nine years old, and how my childhood efforts to hide it backfired spectacularly. I then related a story from when I was ten, in which Back to the Future Part III was released on video on the same weekend of the Bar Mitzvah of the son of a family friend. I wanted to leave the after-gathering at the boy's family's house so that I could go home and watch the movie, but I felt guilty for even thinking this way. Ultimately, a war broke out in my head between the Whims of My Mind and Doing What was Right, but this time the Whims won: I told my parents that I needed to do my Sunday School homework, which was a lie; I simply wanted to watch the movie. But then I was, once again, wracked with guilt. From the original post:

I've always hated lying, and I realized that I needed to confess my true motives. Following my mother upstairs... 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.

I then commented on how I think there might have been some unconscious bias on my mother's part, pointing out that it's not uncommon for little boys-- neurotypical little boys-- at gatherings that they find boring to say things like, "This sucks! I wanna go home and play video games!" Despite the fact that what I said to my mother was essentially a guilt-ridden confession of my "thoughtcrime" rather than an unconsidered demand, she still reprimanded me as if what I had said contained the subtext of the latter. And thanks to emerging efforts in the twenty-first century to encourage others to check their implicit attitudes, I am sure I am not the only one who would note the gender bias. Focused interests are more tolerated in boys, and there is also the expectation of girls to always consider others' wants and needs. An appropriate response from my mother at the house gathering would have been understanding, coupled with a reminder about how I needed to be patient and that a Bar Mitzvah is a once-in-a-lifetime thing, whereas you can watch a movie at any time.

However, I strongly suspect that had the circumstances been slightly different, my then-40-year-old, early-'90s-era mother would have been more understanding, once again, due to unconscious bias: there is one type of focused interest that is historically tolerated well in girls, and that is having a crush on a male celebrity. Mom now knows that I love the Back to the Future series because of the time travel element and, not insignificantly, that I find Doc Brown to be a strangely relatable character (as a kid I had no idea why, but as an adult it became clear when I eventually "headcanoned" him as autistic, but that's another quirky in-depth discussion for another day). I don't know if she knew about this back then, or even if she even questioned why I loved these movies so much, but I guarantee she wasn't laboring under the delusion that I had a crush on Michael J. Fox-- or any of the other actors for that matter. 

But what if I had had a crush on Michael J. Fox, and Mom knew that I wanted to go home and watch Back to the Future Part III so that I could ogle over Fox dressed as a cowboy? Or what if, like a lot of the girls in my fourth-grade class, I was into the then-popular boy band, The New Kids on the Block? What if a new NKOTB album had been released that weekend and I wanted to go home and listen to it because I had a crush on one (or more) of the members and listening to them was like a siren song for my on-the-verge-of-adolescence girl brain? I hate to say it, but in both cases I think Mom would have been more understanding, and her response, sans the disgusted edge to her voice, would have been more along the lines of what it should have been: that I needed to be patient. Similarly, also when I was ten, I relentlessly begged for a remote-controlled hovercraft. Why? Because it reminded me of the flying DeLorean in Back to the Future Part II. One day, after what was likely dozens of requests and audible brainstorming about how I could find a way to get this expensive toy, Mom told me that my "obsession" with getting the hovercraft was "obscene." But again, what if the thing that I had wanted so badly was related to a teen idol that I had a crush on? What if I had had a crush on the New Kids on the Block and there was a $129 statue of one of the members that I wanted so badly?* 

It is cliché for adolescent girls to have crushes on male celebrities, and back then plenty of girls were intensely infatuated with the members of The New Kids on the Block. One girl in my class-- I'll call her Karen-- swore the she was going to marry Joe McIntyre when she grew up. I suspect most parents wouldn't have been "concerned", let alone thought it was "obscene," which is strange because I would think a ten-year-old girl's repeated declarations that she would one day marry a male celebrity almost twice her age could be unnerving: what if she eventually developed a similarly-hyperfocused crush on a teacher or another adult male in her life, and it turned out one of those men was a pervert who would take advantage of her feelings and sexually abuse her? I don't think most parents of that era were cognizant of the disturbingly prevalent occurrence of adult male child groomers, but I suppose that's another illustration of how much more ignorant society was back then. 

As I keep reiterating, I was born in the wrong decade. I was born into an era in which phenomena like unconscious bias weren't discussed like they are now, and in which priorities were skewed. It was an era in which atypical behaviors were, at best, seen as superficial actions and, at worst, the result of brattiness, bad parenting, lack of discipline, take your pick. What they weren't seen as were the manifestations of a brain that was wired differently and was doing its best to get through life. As a result, I took many severe blows, even from well-meaning people like my mother who honestly and sincerely thought they were helping me learn to "get along" in society, not aware of the emotional cost of these lessons. My therapist has told me that he's heard countless similar stories from autistic people who grew up in my generation and earlier.  

If nothing else, I hope I have raised your consciousness here. Please go and think about it, especially if you are raising an autistic girl. You will save her a lot of emotional turmoil.

*This is roughly what the hovercraft cost-- in 1991. After adjusting for inflation, this translates to about $295 in 2023.

Sunday, November 12, 2023

Born in the Wrong Decade Part 3: The Naked Emperor

In the first and second installments of this series, I talked about the perverse level of awareness I had by the age of nine as to how different I was, particularly as it pertained to my focused interest in Back to the Future, and the pathologizing word "obsession" that was often associated with it. These posts illustrated that I was born in the wrong decade because of the lack of acceptance of brains that operate differently; even I didn't accept my own brain, and I made fitful and fruitless attempts to change it and hide my focused interests, which felt "wrong". Had I been born in the 21st century, I would have been spared this self-criticism, as well as criticism from the adults in my life. But what about my own differences that I didn't try to hide, ones that I continually asserted that I shouldn't have to hide? 

Let's segue a little bit: As a rabid fan of the Back to the Future series growing up, I eagerly anticipated the arrival of the 21st century, imagining a world of hoverboards, flying cars, and other advanced technology. Deep down, I didn't believe these particular things would be invented, but I anticipated some incredible technology that I couldn't wait to see. I wasn't disappointed; the me of the 1990s would have been thrilled to learn about the technological innovations of the 21st century, and the me of today is thrilled to witness it. But I don't associate the 21st century with advanced technology as much as I do with something else: a more open and accepting society, one in which people are owning up to their mental quirks that the social sin of thoughtcrime would have silenced them about in the 1990s and earlier. And, in contrast to my "thoughtcrime" about focused interests that I tried to hide, this "thoughtcrime" was something I didn't shut up about-- the thoughtcrime of rejecting the concept of expected gender norms.

As a gender-nonconforming girl in the '90s-- a tomboy, as was the common parlance-- I was expected by many of the adults in my life to be going through a "phase" that I would have to outgrow. Many movies of the era seemed to reflect this expectation: a 12-year-old tomboy gets her first crush on a boy, and by the end of the movie she looks, dresses, and acts more feminine; her sudden conformity a symbol of her maturity. Although I didn't question my mother's condemnation of the concept of "obsession", I vehemently questioned the orthodoxy of the concept of "tomboy" being a characteristic that I was expected to leave behind with the onset of adolescence. I also didn't understand why people even cared: I wasn't hurting anybody; why on earth should it matter to them if I dressed and acted more traditionally masculine than other girls? Sometimes my mother would comment that if I dressed and wore my hair a certain way, people wouldn't be able to tell if I was a boy or a girl. At least once, I said, "So the problem is people won't know what's in my pants? Why is it anybody's business? So they know if they can potentially reproduce with me?" And no, this isn't me retrospectively analyzing the situation as an adult. I was thinking and saying stuff like this by the time I was seventeen. Around then, I also said it shouldn't matter if a boy wants to wear a dress, which was seen as even more radical than the idea of a girl being a tomboy past the age of twelve. And, of course, all of these things that I said were dismissed by adults as the whims of a young, idealistic teenager, one who just didn't understand at all how the world worked. 

But guess what? I was just stating the obvious, that the emperor was naked.

Born in the wrong decade indeed! All these things I was vocal about and that fell largely on deaf ears are now talking points on the mainstream left, particularly as they pertain to transgender and nonbinary people. To suggest among your fellow liberals that being a tomboy at fifteen is a sign of "immaturity" won't go over very well today. Saying that your daughter should wear certain clothes so that people know that she's a girl? You would be laughed out of the room, after being told to get into the habit of asking people-- at the very least when you're not sure what gender they're presenting-- "What are your pronouns?" with the understanding that "they/them" could possibly be the correct answer to that question. 

After years of being told that, no, the emperor was not naked, and that I was the only one who thought that he was, more and more people are admitting that they, too, knew what they saw, but feared they were the only ones and so did not come forward about it. Today, hundreds of thousands-- if not millions-- of people are declaring the emperor naked, and others in their lives have to accept that, yes, he is. He's stark naked, and his nudity can be understood in many ways. It can be understood in the sense that you are someone who has weird focused interests-- or focused interests of any kind. It can be understood in the sense that you are gay, bisexual, transgender or gender nonconforming, or nonbinary. It can be understood in all of the above, or any other form of nonconformity. A lot more people than you realize always understood this.

Welcome to the 21st century. It's great to be here.

The emperor is naked.

Monday, October 23, 2023

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.

Sunday, October 15, 2023

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.

Tuesday, July 18, 2023

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. 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.

Monday, August 29, 2022

The Art of Finding a Therapist

As always, names are changed-- in this case, abbreviations are used for my good therapists, and mischievous nicknames for some pretty bad therapists.

"Dr. L. 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 Dr. L. 

An undisclosed medical condition forced Dr. L. 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 shrinks since age eleven. 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 Dr. L. I started working with a new therapist, Dr. P., 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 Dr. L. 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. 

Dr. L. 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-- Dr. L. 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 Dr. L. who I really clicked with. The first one was Dr. F., whom 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 Dr. L., he spotted a common denominator right away. The other one, Dr. G., was someone I saw in my late twenties when living in New York City. Like Dr. F. and Dr. L., 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. P. 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 (Dr. L. 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.