tag:blogger.com,1999:blog-17733567716475206942024-03-26T17:01:51.957-04:00Eccentrics United: An Autism BlogThis is a blog where I will post about my experiences with being autistic. I invite others to do the same as well as ask me any questions or for advice. PLEASE ADD YOURSELF AS A FOLLOWER! :)Unknownnoreply@blogger.comBlogger130125tag:blogger.com,1999:blog-1773356771647520694.post-54785625449431027222024-01-16T23:45:00.005-05:002024-01-17T13:39:15.978-05:00Lessons About Meltdowns-- From My Cat<p><span style="font-family: arial; font-size: medium;">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.</span></p><p><span style="font-size: medium;"><span style="font-family: arial;">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. </span><span style="font-family: arial;">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. </span></span></p><p><span style="font-size: medium;"><span style="font-family: arial;">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. </span><span style="font-family: arial;">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.</span></span></p><p><span style="font-family: arial; font-size: medium;">Sound familiar?</span></p><p><span style="font-family: arial; font-size: medium;">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.</span></p><p><span style="font-family: arial; font-size: medium;">Adults saying, "It's okay, sweetie!" did not work. It made me more upset.</span></p><p><span style="font-family: arial; font-size: medium;">Adults saying, "You need to calm down," did not work. It made me more upset.</span></p><p><span style="font-family: arial; font-size: medium;">Adults saying, "You're acting like a two-year old," did not work. It made me more upset.</span></p><p><span style="font-family: arial; font-size: medium;">Adults saying, "You need to learn to control your temper!" or sometimes, "You need to learn to control your <i>fucking</i> temper!"-- Guess what? -- Did. Not. Work. It. Made. Me. More. Upset.</span></p><p><span style="font-family: arial; font-size: medium;">Am I making myself clear?</span></p><p><span style="font-family: arial; font-size: medium;">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 <i>end result</i> 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.</span></p><p><span style="font-family: arial; font-size: medium;">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.</span></p><p><span style="font-family: arial; font-size: medium;">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 <i>can</i> calm down. </span></p><p><span style="font-family: arial; font-size: medium;">I feel that I should further explain why addressing the meltdown in the moment makes things worse, even when "nice" words are used:</span></p><p><span style="font-family: arial; font-size: medium;">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."</span></p><p><span style="font-family: arial; font-size: medium;">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."</span></p><p><span style="font-family: arial; font-size: medium;">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."</span></p><p><span style="font-family: arial; font-size: medium;">And when an adult said, "You need to learn to control your (<i>fucking</i>) 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."</span></p><p><span style="font-family: arial; font-size: medium;">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.</span></p><p><span style="font-family: arial; font-size: medium;">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. </span></p><p><span style="font-family: arial; font-size: medium;">And really, people are not much different.</span></p>Unknownnoreply@blogger.com1tag:blogger.com,1999:blog-1773356771647520694.post-11824026090858179082023-12-07T23:56:00.002-05:002023-12-07T23:56:26.777-05:00"More Musings About Having Been Born in the Wrong Decade" or "How to Raise Your Consciousness"<p><span style="font-family: arial; font-size: medium;">For those of you who read my <i><a href="https://eccentricsunited.blogspot.com/2023/10/born-in-wrong-decade-part-1-tears-of.html" target="_blank">Born in the Wrong Decade</a></i> series that I posted last month, I have some more thoughts about an incident I wrote about in the <a href="https://eccentricsunited.blogspot.com/2023/10/born-in-wrong-decade-part-1-tears-of.html" target="_blank">first installment</a> of the series. </span></p><p><span style="font-family: arial; font-size: large;">If you recall, I talked about being very self-conscious about my focused interest in <i>Back to the Future</i>, 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 <i>Back to the Future Part III </i>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:</span></p><p><span style="font-family: arial; font-size: medium;"></span></p><blockquote><span style="font-family: arial; font-size: medium;">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 <i>movie</i>." I was already self-conscious about my hyperfocus on <i>Back to the Future</i>, and hearing the disapproval from my own mother further cemented the idea in my head that it was wrong.</span></blockquote><p></p><div><span style="font-family: arial; font-size: medium;">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-- <i>neurotypical </i>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.</span></div><div><span style="font-family: arial; font-size: medium;"><br /></span></div><div><span style="font-family: arial; font-size: medium;">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 <i>is</i> historically tolerated well in girls, and that is having a crush on a male celebrity. Mom now knows that I love the <i>Back to the Future</i> 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. </span></div><div><span style="font-family: arial; font-size: medium;"><br /></span></div><div><span style="font-family: arial; font-size: medium;">But what if I <i>had </i>had a crush on Michael J. Fox, and Mom knew that I wanted to go home and watch <i>Back to the Future Part III</i> 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 <i>Back to the Future Part II</i>. 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?* </span></div><div><span style="font-family: arial; font-size: medium;"><br /></span></div><div><span style="font-family: arial; font-size: medium;">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. </span></div><div><span style="font-family: arial; font-size: medium;"><br /></span></div><div><span style="font-family: arial; font-size: medium;">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. </span></div><div><span style="font-family: arial; font-size: medium;"><br /></span></div><div><span style="font-family: arial; font-size: medium;">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.</span></div><div><span style="font-family: arial; font-size: medium;"><br /></span></div><div><span style="font-family: arial; font-size: medium;">*<i>This is roughly what the hovercraft cost-- in 1991. After adjusting for inflation, this translates to about $295 in 2023.</i></span></div>Unknownnoreply@blogger.com0tag:blogger.com,1999:blog-1773356771647520694.post-64679390231049315542023-11-12T22:24:00.002-05:002023-11-12T22:24:13.571-05:00Born in the Wrong Decade Part 3: The Naked Emperor<p><span style="font-family: arial;"><span style="font-size: medium;">In the <a href="https://eccentricsunited.blogspot.com/2023/10/born-in-wrong-decade-part-1-tears-of.html" target="_blank">first</a> and <a href="https://eccentricsunited.blogspot.com/2023/10/born-in-wrong-decade-part-2-thoughtcrime.html" target="_blank">second</a> 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 <i>Back to the Future, </i>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>I</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 <i>didn't</i> try to hide, ones that I continually asserted that I shouldn't have to hide? </span></span></p><p><span style="font-family: arial; font-size: medium;">Let's segue a little bit: As a rabid fan of the <i>Back to the Future</i> 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 <i>particular</i> things would be invented, but I anticipated <i>some</i> 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.</span></p><p><span style="font-family: arial; font-size: large;">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 <i>thinking</i> and <i>saying</i> 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. </span></p><p><span style="font-family: arial; font-size: large;">But guess what? I was just stating the obvious, that the emperor was naked.</span></p><p><span style="font-family: arial; font-size: large;">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. </span></p><p><span style="font-family: arial; font-size: large;">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 <i>any</i> 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.</span></p><p><span style="font-family: arial; font-size: large;">Welcome to the 21st century. It's great to be here.</span></p><p><span style="font-family: arial; font-size: large;">The emperor is naked.</span></p><p><br /></p>Unknownnoreply@blogger.com1tag:blogger.com,1999:blog-1773356771647520694.post-23947328107194354262023-10-23T21:08:00.002-04:002023-10-23T21:08:20.291-04:00Born in the Wrong Decade Part 2: Thoughtcrime<p><span style="font-family: arial; font-size: medium;">In the <a href="https://eccentricsunited.blogspot.com/2023/10/born-in-wrong-decade-part-1-tears-of.html" target="_blank">previous installment of this series</a>, 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 <i>Back to the Future</i> 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<i> The Simpsons </i>and <i>The Addams Family</i>. 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 <i>obsessed</i> with something. </span></p><p><span style="font-family: arial; font-size: medium;">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.</span></p><p><span style="font-family: arial; font-size: medium;">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 <i>Back to the Future</i> 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 <i>obsession</i> 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.</span></p><p><span style="font-family: arial; font-size: medium;">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.</span></p><p><span style="font-size: medium;"><span style="font-family: arial;">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 <i>didn't</i> 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. </span></span></p><p><span style="font-size: medium;"><span style="font-family: arial;">But what, then, of other "thoughtcrime," such as a focused interest on a movie?</span><span style="font-family: arial;"> </span><span style="font-family: arial;">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. </span></span></p><p><span style="font-size: medium;"><span style="font-family: arial;">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 <i>Back to the Future</i> 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.</span></span></p><p><span style="font-size: medium;"><span style="font-family: arial;">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. </span></span></p><p><span style="font-size: medium;"><span style="font-family: arial;">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. </span></span></p><p><span style="font-size: medium;"><span style="font-family: arial;">And the emperor IS naked.</span></span></p>Unknownnoreply@blogger.com1tag:blogger.com,1999:blog-1773356771647520694.post-43698655295437888442023-10-15T23:15:00.012-04:002023-10-20T19:37:57.729-04:00Born in the Wrong Decade Part 1: Tears of a Baby Fan Geek<p><span style="font-family: arial; font-size: medium;">I have long told people that I was born in the wrong decade. </span></p><p><span style="font-family: arial; font-size: medium;">I'd even go so far as to say the wrong <i>century</i> because, ideally, I wouldn't have been born any earlier than 2005.</span></p><p><span style="font-family: arial; font-size: medium;">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.</span></p><p><span style="font-family: arial; font-size: medium;">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.</span></p><p><span style="font-family: arial; font-size: medium;">I always knew there was something different about me, and between being a little kid and being a little kid in the <i>1980s</i>, 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.</span></p><p><span style="font-family: arial; font-size: medium;">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 <i>Back to the Future</i> films for the first time, just after <i>Back to the Future Part II</i> 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 <i>Part II</i>, 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 <i>Back to the Future</i> 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 <i>Back to the Future Part II</i>'s release on video as well as the theatrical release of the already-promised <i>Part III</i>, a trailer for which was teased at the end of <i>Part II</i>. 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. </span></p><p><span style="font-size: medium;"><span style="font-family: arial;">My self-consciousness about my focus on <i>Back to the Future</i> 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 </span><span style="font-family: arial;">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."</span><span style="font-family: arial;"> 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.</span></span></p><p><span style="font-family: arial; font-size: medium;">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-- <i>Back to the Future</i> 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-- <i>Back to the Future</i> 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 <i>Back to the Future</i> 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 <i>again</i>?" he'd quip with a pronounced roll of his eyes. </span></p><p><span style="font-size: medium;"><span style="font-family: arial;">After <i>Back to the Future Part III</i> 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 </span><span style="font-family: arial;">so that I could have an idea of how long it would be until I could finally watch </span><i style="font-family: arial;">Back to the Future Part III</i><span style="font-family: arial;"> again</span><span style="font-family: arial;">; I normally wore a watch, but as it was a digital sports watch, it was deemed too casual for this event. </span><span style="font-family: arial;"> </span></span></p><p><span style="font-family: arial; font-size: medium;">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 <i>Back to the Future Part III</i>. 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 <i>movie</i>." I was already self-conscious about my hyperfocus on <i>Back to the Future</i>, and hearing the disapproval from my own mother further cemented the idea in my head that it was wrong.</span></p><p><span style="font-size: medium;"><span style="font-family: arial;">Keep in mind that I was nine and ten years old when I was going through all of this. Was my focus on <i>Back to the Future</i> 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. </span><span style="font-family: arial;">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?"</span></span></p><p><span style="font-size: medium;"><span style="font-family: arial;">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 </span><i style="font-family: arial;">neurotypical</i><span style="font-family: arial;"> 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 <i>little</i> 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.</span></span></p><p><span style="font-family: arial; font-size: medium;">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 <i>Back to the Future</i> 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.</span></p><p><span style="font-family: arial; font-size: medium;">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."</span></p><p><span style="font-family: arial; font-size: medium;">"Thoughtcrime" will be the subject of the next post in this series.</span></p><p><span style="font-family: arial;"><i>*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.</i></span></p><p><span style="font-family: arial;"><i>**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.</i></span></p>Unknownnoreply@blogger.com3tag:blogger.com,1999:blog-1773356771647520694.post-22745601597097795302023-07-18T23:42:00.013-04:002023-08-04T16:17:52.866-04:00All Things Must Pass<p style="text-align: left;"><span style="font-size: medium;"><span style="font-family: arial;">A couple weeks ago, a post in my social media feed quickly caught my attention. </span></span></p><p style="text-align: left;"><span style="font-size: medium;"><span style="font-family: arial;">Alan Arkin was dead. </span></span></p><p style="text-align: left;"><span style="font-size: medium;"><span><span style="font-family: arial;">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. </span></span><span style="font-family: arial;">However, it would be dishonest for me to say that I didn't feel some sense of loss.</span></span></p><p style="text-align: left;"><span style="font-family: arial; font-size: medium;">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.</span></p><p style="text-align: left;"><span style="font-size: medium;"><span style="font-family: arial;">I first discovered Alan Arkin in August of 1993 during a 5:15 AM airing of the Cold War-era classic <i>The Russians are Coming! The Russians are Coming! </i></span><span style="font-family: arial;">While darkness loomed outside and the rest of my family slept, I watched one of the main characters in the film </span><span style="font-family: arial;">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. </span></span></p><p style="text-align: left;"><span style="font-family: arial; font-size: medium;">"Who is this guy?" I wondered. "He's <i>funny</i>. How does he <i>do </i>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 <i>Edward Scissorhands</i> and the mechanic in <i>The Rocketeer</i>, 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. </span></p><p style="text-align: left;"><span style="font-size: medium;"><span style="font-family: arial;">About a year after I first discovered </span><i style="font-family: arial;">The Russians are Coming!,</i><span style="font-family: arial;"> I read an article about Alan Arkin in the 1967 edition of </span><i style="font-family: arial;">Current Biography</i><span style="font-family: arial;">. 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.</span></span></p><p style="text-align: left;"><span style="font-size: medium;"><span style="font-family: arial;">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 <i>Guys and Dolls</i>. 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. </span><span style="font-family: arial;">I </span><span style="font-family: arial;">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.</span><span style="font-family: arial;"> </span><span style="font-family: arial;"> 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. </span><span style="font-family: arial;">Today, I treasure it more than ever. </span></span></p><p style="text-align: left;"><span style="font-family: arial; font-size: medium;">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 <i>Going in Style</i>, 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 <i>Little Miss Sunshine</i> 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<i>. </i>For example, he once ordered "cut" and shouted, "Get her mother!" when he misinterpreted her crying as genuine distress rather than acting. </span></p><p style="text-align: left;"><span style="font-family: arial; font-size: medium;">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. </span></p><p style="text-align: left;"><span style="font-family: arial; font-size: medium;">All things must pass, but Alan Arkin's memory will live on.</span></p><p style="text-align: left;"><span style="font-family: arial; font-size: medium;"><br /></span></p><p style="text-align: left;"><br /></p>Unknownnoreply@blogger.com6tag:blogger.com,1999:blog-1773356771647520694.post-848529298614021702022-08-29T00:47:00.003-04:002022-08-29T02:43:11.617-04:00The Art of Finding a Therapist<p><span style="font-family: arial; font-size: medium;"><i>As always, names are changed-- in this case, abbreviations are used for my good therapists, and mischievous nicknames for some pretty bad therapists.</i></span></p><p><span style="font-family: arial; font-size: medium;">"Dr. L. would have some good advice for me on this," I often say to myself when I am having a difficult moment.</span></p><p><span style="font-family: arial; font-size: medium;">But then I remember that I am no longer working with Dr. L. </span></p><p><span style="font-family: arial; font-size: medium;">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.</span></p><p><span style="font-family: arial; font-size: medium;">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.</span></p><p><span style="font-family: arial; font-size: medium;">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. </span></p><p><span style="font-family: arial; font-size: medium;">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.</span></p><p><span style="font-family: arial; font-size: medium;">And finally-- and this is not a trivial issue-- Dr. L. laughed at my weird, gallows sense of humor. And that's important.</span></p><p><span style="font-family: arial; font-size: medium;">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. </span></p><p><span style="font-family: arial; font-size: medium;">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).</span></p><p><span style="font-family: arial; font-size: medium;">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:</span></p><p><span style="font-family: arial; font-size: medium;"><b>Dr. Bonehead:</b> 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.</span></p><p><span style="font-family: arial; font-size: medium;"><b>Dr. Uh-Huh: </b>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.</span></p><p><span style="font-family: arial; font-size: medium;"><b>The Drama Queen: </b>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. </span></p><p><span style="font-family: arial; font-size: medium;">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."</span></p><p><span style="font-family: arial; font-size: medium;">Sometimes, you just need to keep looking when your therapist isn't working out. And there's nothing wrong with that.</span></p><p><span style="font-family: arial; font-size: medium;"><i>*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.</i></span></p>Unknownnoreply@blogger.com0tag:blogger.com,1999:blog-1773356771647520694.post-67794631238064088042022-08-24T23:23:00.014-04:002022-08-25T07:20:10.012-04:00Knowing My Audience<p><span style="font-family: arial; font-size: medium;">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? </span></p><p><span style="font-family: arial; font-size: medium;">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.</span></p><p><span style="font-family: arial; font-size: medium;">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.</span></p><p><span style="font-family: arial; font-size: medium;">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."</span></p><p><span style="font-family: arial; font-size: medium;">Consequences? <i>What </i>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.</span></p><p><span style="font-family: arial; font-size: medium;">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 <i>do</i> 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.</span></p><p><span style="font-family: arial; font-size: medium;">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.</span></p><p><span style="font-family: arial; font-size: medium;">His response? "Please don't!"</span></p><p><span style="font-family: arial; font-size: medium;"><br /></span></p><p><span style="font-family: arial; font-size: medium;"><i>*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. </i></span></p>Unknownnoreply@blogger.com0tag:blogger.com,1999:blog-1773356771647520694.post-41714434662492946712022-04-14T20:51:00.004-04:002022-04-14T20:51:55.851-04:00Clinical Detachment = Lack of Empathy?<p><span style="font-family: arial; font-size: medium;">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. </span></p><p><span style="font-family: arial; font-size: medium;">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?"</span></p><p><span style="font-family: arial; font-size: medium;">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. </span></p><p><span style="font-family: arial; font-size: medium;">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 <i>why</i> 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.</span></p><p><span style="font-family: arial; font-size: medium;">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. </span></p><div class="separator" style="clear: both; text-align: left;"><span style="font-family: arial; font-size: medium;">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. </span></div><div class="separator" style="clear: both; text-align: left;"><span style="font-family: arial; font-size: medium;"><br /></span></div><div class="separator" style="clear: both; text-align: left;"><span style="font-family: arial; font-size: medium;">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. </span></div><div class="separator" style="clear: both; text-align: left;"><span style="font-family: arial; font-size: medium;"><br /></span></div><div class="separator" style="clear: both; text-align: left;"><span style="font-family: arial; font-size: medium;">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.</span></div><div class="separator" style="clear: both; text-align: left;"><span style="font-family: arial; font-size: medium;"><br /></span></div><div class="separator" style="clear: both; text-align: left;"><span style="font-family: arial; font-size: medium;">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 <i>You</i>, 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!</span></div><div class="separator" style="clear: both; text-align: left;"><span style="font-family: arial; font-size: medium;"><br /></span></div><div class="separator" style="clear: both; text-align: left;"><span style="font-family: arial; font-size: medium;">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.</span></div><div class="separator" style="clear: both; text-align: left;"><span style="font-family: arial; font-size: medium;"><br /></span></div><div class="separator" style="clear: both; text-align: left;"><span style="font-family: arial; font-size: medium;">Bottom line, a certain level of clinical detachment is necessary in some contexts-- and humanity is all the richer and better for it.</span></div><div class="separator" style="clear: both; text-align: left;"><span style="font-family: arial; font-size: medium;"><br /></span></div><div class="separator" style="clear: both; text-align: left;"><span style="font-family: arial; font-size: medium;"><br /></span></div><span style="font-family: arial; font-size: medium;"><br /></span><span style="font-family: arial; font-size: medium;"><br /></span><p></p>Unknownnoreply@blogger.com1tag:blogger.com,1999:blog-1773356771647520694.post-2036826145971315012022-02-05T23:00:00.005-05:002022-02-10T21:52:20.587-05:00Language Wars: Autism vs. Asperger's, Identity-First vs. Person-First<p><span style="font-family: arial; font-size: medium;">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 <i>Eccentrics United: An Asperger's Syndrome Blog </i>but is now <i>Eccentrics United: An Autism Blog</i>. My corresponding Twitter name (<a href="https://twitter.com/EccentricsUnite" target="_blank">@eccentricsunite</a>) 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: </span></p><p><span style="font-family: arial; font-size: medium;">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. </span></p><p><span style="font-size: medium;"><span style="font-family: arial;">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. </span><i style="font-family: arial;">However, the aforementioned have nothing to do why I made this change.</i><span style="font-family: arial;"> 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. </span><span style="font-family: arial;"> </span></span></p><p><span style="font-size: medium;"><span style="font-family: arial;">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." </span><span style="font-family: arial;">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" <i>or</i> "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! </span></span></p><p><span style="font-family: arial; font-size: medium;">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! </span></p><p><span style="font-size: medium;"><span style="font-family: arial;">I have made it clear that my preference is for identity-first language. And that is what it is: a <i>personal </i>preference. W</span><span style="font-family: arial;">hen 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". </span></span></p><p><span style="font-size: medium;"><span style="font-family: arial;">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. </span><span style="font-family: arial;">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. </span><span style="font-family: arial;">I</span><span style="font-family: arial;">f 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. </span><span style="font-family: arial;">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.</span></span></p><p><span style="font-family: arial; font-size: medium;">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.</span></p><p><span style="font-family: arial; font-size: medium;">A friendly reminder: <a href="https://eccentricsunited.blogspot.com/2021/08/can-we-stop-alienating-each-other.html" target="_blank">Can We Stop Alienating Each Other?</a></span></p>Unknownnoreply@blogger.com0tag:blogger.com,1999:blog-1773356771647520694.post-81319809005803514862021-11-14T23:31:00.005-05:002021-11-14T23:46:48.648-05:00Ass-Backwards<p><span style="font-family: arial; font-size: medium;">I've been thinking lately about how how often society gets things ass-backwards.</span></p><p><span style="font-family: arial; font-size: medium;">Everyday people, such as parents, teachers, and peers come to conclusions about invisible differences and disabilities for ridiculous-- sometimes backwards-- reasons. That is, they mistake genetics for environment, or even effect for cause. Even psychologists and other experts have done it as well. </span></p><p><b style="font-family: arial; font-size: x-large;"><br /></b></p><p><b style="font-family: arial; font-size: x-large;">Mistaking Genetics for Environment</b></p><p><span style="font-family: arial; font-size: medium;">In the earlier part of the 20th century, psychologists "blamed" autism on "refrigerator parents", particularly mothers. These mothers who were perceived as cold and distant were implicated in making their children cold and distant-- a description that is, of course, rooted in profound ignorance and narrow-mindedness of what is considered "normal." </span></p><p><span style="font-family: arial; font-size: medium;">We now know that autism has a strong genetic component, and that whatever traits these kids might have are not the result of failing to bond with their parents. In fact, the bond between autistic kids and their parents might be strong. It's just that autistic parents tend to produce autistic kids-- because of genetics. And putting most or all of the blame of the mother is clearly rooted in sexism. Women in particular are expected to be what I call a "charismatic, eight-armed woman", happily tending to multiple people's needs. In my experience, people don't expect this of men. So if a woman is not acting like the social octopus that people expect, she might be more likely to be seen as "cold" and "distant"-- the mythological "refrigerator mother." Even if the father has the same traits, he might not be labeled as a "refrigerator parent."</span></p><p><span style="font-family: arial; font-size: medium;"><br /></span></p><p><span style="font-family: arial; font-size: medium;"><b style="font-size: x-large;">Mistaking Effect for Cause</b></span></p><p><span style="font-family: arial; font-size: medium;">I also remember reading somewhere* about the infamous "distant fathers" and "overbearing mothers" of effeminate boys who grew up to be gay. Back when psychologists pathologized homosexuality, many believed that the father was not spending enough time with his son and the mother was spending too much time with him, thus making these boys more effeminate. There have been many cases of "distant fathers" and "overbearing mothers" in the cases of effeminate young boys who grew up to be gay (though I suspect this is less true today), but it is not the <i>cause </i>but the <i>effect</i>. If I remember what I read correctly, it seems that these fathers counted on raising a son with whom they'd bond over football or mechanics, but instead had a son who liked to play with dolls. In a world that puts strong emphasis on masculinity in boys and men, disappointed fathers didn't know how to bond with their son and ended up not spending much time with them. The mothers ended up essentially filling the role of both parents.</span></p><p><span style="font-family: arial; font-size: medium;">I have experience with the ass-backwards mistaking effect for cause in my own life. When I was growing up, I hardly watched anything that was animated until I saw the first two <i>Back to the Future</i> films at age nine. Even then, I still preferred watching animation and that is what I almost always settled on while flipping through the channels. Between my social difficulties and my problems comprehending some live-action movies and plays-- that is, to the point where sometimes I literally had no idea what the story was about-- my parents (especially my mother) blamed my preference for animation. They believed that I was not challenging my brain enough and so my comprehension of social situations and movies was underdeveloped.</span></p><p><span style="font-family: arial; font-size: medium;">They got it ass-backwards.</span></p><p><span style="font-family: arial; font-size: medium;">As it turns out, many people on the autism spectrum, as well as people with <a href="https://en.wikipedia.org/wiki/Prosopagnosia" target="_blank">prosopagnosia</a>-- kids and adults-- have a strong preference for animation. Why? Well, it's simple. You get more information about a character and his motivation when he is a brightly-colored individual who makes broad gestures and is easier to differentiate from others. This is especially critical when you, like me, are a prosopagnosiac in addition to being autistic and have a hard time learning new faces. To someone on the autism spectrum-- especially if that person has prosopagnosia-- characters in live-action movies might seem like faceless naked mole rats in drab clothing. Is it any wonder then that <i>Back to the Future</i> was what made me more open to watching live-action movies? Doc Brown, with his wild hair, brightly colored clothing, and broad gestures is much easier to read than many movie characters.</span></p><p><span style="font-family: arial; font-size: medium;">So the short answer is that my preference for animation was the <i>result</i>, rather than the cause, of my social problems and difficulties following certain movies. </span></p><p><span style="font-family: arial; font-size: medium;">I think this type of ass-backwards reasoning is finally starting to change and is being seen for the nonsense that it is. Please keep this in mind when trying to understand your autistic kids-- or adult friends.</span></p><p><span style="font-family: arial; font-size: medium;">If anybody has a similar story about this type of ass-backwards reasoning, particularly as it relates to autism, let me know in the comments!</span></p><p><span style="font-family: arial; font-size: medium;"><i><br /></i></span></p><p><span style="font-family: arial; font-size: medium;"><i>*I thought it was in Judith Rich Harris's </i>The Nurture Assumption<i>, but I can't seem to find the reference in the book. Maybe it was in something that Steven Pinker wrote. If anybody knows what I'm talking about, please leave a comment.</i></span></p>Unknownnoreply@blogger.com1tag:blogger.com,1999:blog-1773356771647520694.post-74258495502782965022021-11-07T23:44:00.008-05:002021-11-08T20:23:50.058-05:00Is It Ableism? Part 12: It's Complicated<p><i><span style="font-family: arial; font-size: medium;">Links to previous installments in this series:</span></i></p><p><i><span style="font-family: arial; font-size: medium;"><a href="https://eccentricsunited.blogspot.com/2021/10/is-it-ableism-part-1-revisiting-dark.html" target="_blank">Part 1: Revisiting the Dark Ages</a></span></i></p><p><i><span style="font-family: arial; font-size: medium;"><a href="https://eccentricsunited.blogspot.com/2021/10/is-it-ableism-part-2-obvious.html" target="_blank">Part 2: Obvious Definitions of Ableism</a></span></i></p><p><i><span style="font-family: arial; font-size: medium;"><a href="https://eccentricsunited.blogspot.com/2021/10/is-it-ableism-part-3-defining-disability.html" target="_blank">Part 3: Defining Disability</a></span></i></p><p><i><span style="font-family: arial; font-size: medium;"><a href="https://eccentricsunited.blogspot.com/2021/10/is-it-ableism-part-4-internalized.html" target="_blank">Part 4: Internalized Ableism</a></span></i></p><p><i><span style="font-family: arial; font-size: medium;"><a href="https://eccentricsunited.blogspot.com/2021/10/is-it-ableism-part-5-is-overcoming.html" target="_blank">Part 5: Is "Overcoming" Worth It?</a></span></i></p><p><i><span style="font-family: arial; font-size: medium;"><a href="https://eccentricsunited.blogspot.com/2021/10/is-it-ableism-part-6-accommodation.html" target="_blank">Part 6: Accommodation</a> </span></i></p><p><i><span style="font-family: arial; font-size: medium;"><a href="https://eccentricsunited.blogspot.com/2021/11/is-it-ableism-part-7-infantilization.html" target="_blank">Part 7: Infantilization</a></span></i></p><p><i><span style="font-family: arial; font-size: medium;"><a href="https://eccentricsunited.blogspot.com/2021/11/is-it-ableism-part-8-immaturity-or-blog.html" target="_blank">Part 8: Immaturity or "The Blog Post Where I Have a Meltdown"</a></span></i></p><div><i><span style="font-family: arial; font-size: medium;"><a href="https://eccentricsunited.blogspot.com/2021/11/is-it-ableism-part-9-unintentional.html" target="_blank">Part 9: Unintentional Gaslighting</a></span></i></div><div><i><span style="font-size: medium;"><br /></span></i></div><div><i><span style="font-family: arial; font-size: medium;"><a href="https://eccentricsunited.blogspot.com/2021/11/is-it-ableism-part-10-challenging.html" target="_blank">Part 10: Challenging Comfort Zones</a></span></i></div><div><i><span style="font-size: medium;"><br /></span></i></div><div><i><span style="font-family: arial; font-size: medium;"><a href="https://eccentricsunited.blogspot.com/2021/11/is-it-ableism-part-11-advocating-for.html" target="_blank">Part 11: Advocating for Your Needs</a></span></i></div><div><i><span style="font-size: medium;"><br /></span></i></div><div><span style="font-family: arial; font-size: medium;">We have unpacked a lot about ableism in this series, and it's only natural that it took a large number of posts to do so. It is a very broad topic with a lot that deserves examination. There is much more I wish I could have covered: For example, what's the difference between a variation in brain function and a disability in brain function? Is it all a matter of opinion? Should it even be defined? And are there limits to accommodation, let alone "reasonable" accommodation? These are endless conversations, and maybe I will tackle them sometime. However, I hope that I managed to elucidate a number of other issues that I feel are overlooked when discussing ableism. I also hope that I have raised your consciousness in the kinds of things that could be classified as ableist. However, it is here that I would like to urge you to be cautious when labeling attitudes or actions of people as ableist-- let alone people <i>themselves</i> as ableist.</span></div><div><span style="font-family: arial; font-size: medium;"><br /></span></div><div><span style="font-size: medium;"><span style="font-family: arial;">Ableism is a complicated, nuanced issue, whether it's about how it relates to autistic people or people with other disabilities. As I've alluded to in this series-- and in a recent post, <a href="https://eccentricsunited.blogspot.com/2021/08/can-we-stop-alienating-each-other.html" target="_blank">"Can We Stop Alienating Each Other?"</a>-- I feel that "ableist" and "ableism" are words that, while they have their place, are unfortunately overused to the point where they feel more like a thought-terminating cliché than a complex concept worth examining. I see this a lot in autism groups on Facebook and in social justice circles in general. </span><span style="font-family: arial;">What has become apparent lately is that there seems to be a kind of orthodoxy in these groups. That is, there has to be a universally-agreed-upon definition of what constitutes ableism that cannot be questioned unless that person wants to be stamped with a scarlet letter of sorts.</span></span></div><div><span style="font-family: arial; font-size: medium;"><br /></span></div><div><span style="font-family: arial; font-size: medium;">I see accusations of ableism hurled around when, God forbid, someone in an autism group says that they prefer the word "Asperger's" instead of autism to describe themselves. One reason this upsets so many people is that "Asperger's" is a word used to describe someone on the autism spectrum who is considered "high functioning." People who object to the use of "Asperger's" often tell the person that they feel superior to "lower-functioning" autistic people, whom they want to distance themselves from. They accuse the person of ableism, internalized ableism, and all-around bigotry. Whether or not there is any truth to this is a discussion worth having, but it's not going to work unless the discussion will be civil.</span></div><div><span style="font-family: arial; font-size: medium;"><br /></span></div><div><span style="font-family: arial; font-size: medium;">Right now I can hear objections to my comments about "civil discussion" in the form of accusations of ableism: What about people who have been traumatized when they were classified as "low functioning" and therefore "hopeless"? One or more of those people might have PTSD and cannot help but have an angry response. How dare I demand a particular ability that they might not have? </span></div><div><span style="font-family: arial; font-size: medium;"><br /></span></div><div><span style="font-family: arial; font-size: medium;">Again, a discussion worth having... and it's important to note that not everybody has experienced that kind of trauma or, if they have, they might not have PTSD from it. People who can handle the discussion should have it, but the people who can't might do well to turn off notifications for the thread. Is that an ableist statement? </span></div><div><span style="font-family: arial; font-size: medium;"><br /></span></div><div><span style="font-family: arial; font-size: medium;">What about the common accusations of internalized ableism?</span></div><div><span style="font-family: arial; font-size: medium;"><br /></span></div><div><span style="font-size: medium;"><span style="font-family: arial;">Is it internalized ableism for me to be glad I've never had sensory issues and to wish I didn't have prosopagnosia? Is it internalized ableism for me to say I'm glad I don't need to use a wheelchair? What about someone who needs a wheelchair and wishes they didn't? Years ago, my mom, a retired teacher, told me a story about how one of her students, a wheelchair user, wrote about how he often had dreams about being able to run down a football field. He was always devastated when he woke up from these dreams, as he didn't know what it was like to be able to run, or even walk. Is he guilty of internalized ableism? I think not. But if you think so, then </span><span style="font-family: arial;">probably every one of us-- including people with disabilities-- is guilty of internalized ableism on some level. And at that point, the term ceases to have meaning. In any case, in none of these situations am I-- or my mom's former student-- making declarations of inferiority to people without these disabilities. We just prefer we didn't have them.</span></span></div><div><span style="font-family: arial; font-size: medium;"><br /></span></div><div><span style="font-family: arial; font-size: medium;">I have even heard stories about people who have confessed to being worried that some activity they do will lead to an accident that will make them need a wheelchair. Then they feel guilty because they think it's a form of internalized ableism. I'm sorry, but that's absolutely ridiculous. It's nice to be able to walk. What's ableism is looking down on people who can't!</span></div><div><span style="font-family: arial; font-size: medium;"><br /></span></div><div><span style="font-family: arial; font-size: medium;">What if the late astrophysicist Stephen Hawking (who likely wished he hadn't become paralyzed and had to use a wheelchair, but that's a different point than the one I'm about to make), had gotten into an accident that affected his cognitive function? Let's say his nonverbal IQ score, which was apparently an unbelievable 160, dropped to 102. IQ isn't everything, but 102 is not enough to handle something as intellectually demanding as astrophysics. When I was a kid, my nonverbal IQ score was actually measured at 102 (I have nonverbal learning disability, like many of us on the spectrum). And guess what? I wouldn't blame Hawking for being devastated if this happened to him, and I wouldn't consider it ableism, internalized or otherwise. Because you know what? It sucks to be able to lose the ability to do something, especially if that ability was important to you.</span></div><div><span style="font-family: arial; font-size: medium;"><br /></span></div><div><span style="font-family: arial; font-size: medium;">There are some truths that we can't pretend don't exist. Like it or not, every interaction that we have with one another assumes some level of ability. By writing this blog post, I am assuming that you can see and that you can read. Or, at least I'm assuming that if you can't do one or both that someone-- or something, like the voice function on your device-- is reading it to you. I'm also assuming that you know how to turn on your device. I also assume that your reading comprehension is within typical or near-typical limits. Otherwise, you might not be able to understand the blog post. Is it ableist for me to make these assumptions?</span></div><div><span style="font-family: arial; font-size: medium;"><br /></span></div><div><span style="font-family: arial; font-size: medium;">Maybe in the Facebook groups where people shout "ableism!" like it's going out of style, they're also assuming that everybody in the group can read. How do they know there isn't someone in the group who can't read for some reason and is just there because they like looking at the color scheme in the group, and just being there makes them feel like they belong? Nobody knows for certain that this isn't happening.</span></div><div><span style="font-family: arial; font-size: medium;"><br /></span></div><div><span style="font-family: arial; font-size: medium;">We may be wrong sometimes when we make assumptions about other people's abilities, and that's okay as long as we are open to learning. For instance, someone might have a knee-jerk reaction when witnessing a ten-year-old having a meltdown in the store because his parents won't buy him the toy he wanted. She might assume that the kid is spoiled and has parents who normally cater to his every whim. She might turn to her friend, an adult on the autism spectrum, and say, "That kid is throwing a tantrum! He wasn't brought up right!" The friend might say, "That's possible-- or it could be that he's autistic. Maybe he's having a meltdown because he's been overly invested in this toy for months, and he's devastated now that he is learning that he can't get it. If you think this is hard for you to witness, think how hard it is for him to experience it." If she is open to what her friend tells her and is willing to learn from her insight, then that's a good thing!</span></div><div><span style="font-family: arial; font-size: medium;"><br /></span></div><div><span style="font-family: arial; font-size: medium;">What about ableist language? I've heard arguments that saying, "This movie is stupid," is ableist because of the word "stupid." I don't think so, because, as I stated in <a href="https://eccentricsunited.blogspot.com/2021/11/is-it-ableism-part-8-immaturity-or-blog.html" target="_blank">Part 8</a>, this is a word that is used to describe actions or attitudes when a person with average or above average intelligence was doing them clearly knew better-- or, in the case of a movie, the word just means it was badly written. It's not a medical term, and most people understand that it's lousy to use it to describe someone with an intellectual disability. "Retarded," however, is a different matter, because it has been a medical term in living memory. </span></div><div><span style="font-family: arial; font-size: medium;"><br /></span></div><div><span style="font-size: medium;"><span style="font-family: arial;">There is no limit to what we could consider ableist. Maybe </span><span style="font-family: arial;">it's ableist to not drink during pregnancy because the alcohol could cause the baby to have an intellectual disability. Hell, by extension it means that the mother is ableist for valuing intelligence and wanting her child to not struggle in school. </span><span style="font-family: arial;">You see how ridiculous this sounds? </span></span></div><div><span style="font-size: medium;"><br /></span></div><div><span style="font-size: medium;"><span style="font-family: arial;">And one more thing that I want to point out is that none of us have 20/20 foresight. </span><span style="font-family: arial;">There are many things that parents, teachers, camp counselors, and peers said to me in the '90s that would be considered ableist with a 21st-century awareness and understanding of autism and other conditions. As I've said, I believe that the appropriate application of the label of "ableism" is contingent upon the person knowing that a disability is present, and therefore I have to let some of these people off the hook. </span><span style="font-family: arial;">We as a society are learning more, and this is a sign of progress.</span><span style="font-family: arial;"> There is no doubt in my mind that we are-- hell, <i>I</i> am-- saying things today that will be considered ableist in twenty years in light of a disability that hasn't been identified yet.</span></span></div><div><span style="font-family: arial; font-size: medium;"><br /></span></div><div><span style="font-family: arial; font-size: medium;">I am open to having my mind changed on this post-- hell, on all of the posts in this series. I might look back at this series in a month, a year, a decade and realize that there are holes in my arguments and that maybe there would be a better word than "ableism" to describe the overarching theme of this series. And just like with the book that I talked about in <a href="https://eccentricsunited.blogspot.com/2021/10/is-it-ableism-part-4-internalized.html" target="_blank">Part 4</a>, I might end up cringing at some of what I have written. </span></div><div><span style="font-family: arial; font-size: medium;"><br /></span></div><div><span style="font-family: arial; font-size: medium;">People evolve and their perceptions evolve, and we have to let them. </span></div>Unknownnoreply@blogger.com0tag:blogger.com,1999:blog-1773356771647520694.post-1784531158113071302021-11-07T19:26:00.009-05:002021-11-07T23:45:29.271-05:00Is It Ableism? Part 11: Advocating for Your Needs<p><i><span style="font-family: arial; font-size: medium;">Links to previous installments in this series:</span></i></p><p><i><span style="font-family: arial; font-size: medium;"><a href="https://eccentricsunited.blogspot.com/2021/10/is-it-ableism-part-1-revisiting-dark.html" target="_blank">Part 1: Revisiting the Dark Ages</a></span></i></p><p><i><span style="font-family: arial; font-size: medium;"><a href="https://eccentricsunited.blogspot.com/2021/10/is-it-ableism-part-2-obvious.html" target="_blank">Part 2: Obvious Definitions of Ableism</a></span></i></p><p><i><span style="font-family: arial; font-size: medium;"><a href="https://eccentricsunited.blogspot.com/2021/10/is-it-ableism-part-3-defining-disability.html" target="_blank">Part 3: Defining Disability</a></span></i></p><p><i><span style="font-family: arial; font-size: medium;"><a href="https://eccentricsunited.blogspot.com/2021/10/is-it-ableism-part-4-internalized.html" target="_blank">Part 4: Internalized Ableism</a></span></i></p><p><i><span style="font-family: arial; font-size: medium;"><a href="https://eccentricsunited.blogspot.com/2021/10/is-it-ableism-part-5-is-overcoming.html" target="_blank">Part 5: Is "Overcoming" Worth It?</a></span></i></p><p><i><span style="font-family: arial; font-size: medium;"><a href="https://eccentricsunited.blogspot.com/2021/10/is-it-ableism-part-6-accommodation.html" target="_blank">Part 6: Accommodation</a> </span></i></p><p><i><span style="font-family: arial; font-size: medium;"><a href="https://eccentricsunited.blogspot.com/2021/11/is-it-ableism-part-7-infantilization.html" target="_blank">Part 7: Infantilization</a></span></i></p><p><i><span style="font-family: arial; font-size: medium;"><a href="https://eccentricsunited.blogspot.com/2021/11/is-it-ableism-part-8-immaturity-or-blog.html" target="_blank">Part 8: Immaturity or "The Blog Post Where I Have a Meltdown"</a></span></i></p><div><i><span style="font-family: arial; font-size: medium;"><a href="https://eccentricsunited.blogspot.com/2021/11/is-it-ableism-part-9-unintentional.html" target="_blank">Part 9: Unintentional Gaslighting</a></span></i></div><div><i><br /></i></div><div><i><span style="font-family: arial; font-size: medium;"><a href="https://eccentricsunited.blogspot.com/2021/11/is-it-ableism-part-10-challenging.html" target="_blank">Part 10: Challenging Comfort Zones</a></span></i></div><div><span style="font-size: medium;"><br /></span></div><div><span style="font-family: arial; font-size: medium;"><i>As always, names changed.</i></span></div><div><i><span style="font-size: medium;"><br /></span></i></div><div><span style="font-family: arial; font-size: medium;">Well, we're down to the wire. In our previous installment, I discussed how everybody-- regardless of neurological profile, disability, etc.-- needs to have their comfort zones challenged. The caveat, of course, is that people around us need to understand and respect that there are going to be limits to these challenges. Sometimes, we need to advocate for our needs when others don't seem to understand.</span></div><div><span style="font-family: arial; font-size: medium;"><br /></span></div><div><span style="font-family: arial; font-size: medium;">On the day after Thanksgiving in 2014, I was out for breakfast with my extended family. My cousin announced that she was pregnant with her first child. However, her aunt hadn't shown up for breakfast yet and we were told to wait until she got there before making the "official" announcement (I think I hadn't heard that bit of instruction... I don't recall). When my cousin's aunt showed up, my cousin once again announced she was pregnant and acted like this was the first time she revealed it to everybody. I said something about how we had been talking about it before, and my cousin put her head in her hands and said, "Oh, Julie..." in exasperation. </span></div><div><span style="font-family: arial; font-size: medium;"><br /></span></div><div><span style="font-size: medium;"><span style="font-family: arial;">Just a couple years before, had the same situation happened, I might have apologized and we would have laughed it off. However, </span><span style="font-family: arial;">I was still reeling from having recently been fired from a library in Massachusetts and, just months before that, a library in Maine. Before working at these two libraries, I had thought that I was long past being fired from jobs over social faux pas (pases?), but after the problems at the libraries, for the first time in years, I was incredibly self-conscious about how I was perceived and if I did things "wrong." I was chronically unemployed, and I thought to myself, "If I did this at a business meeting or something I would be fired on the spot." I felt incredibly stupid and that no matter what I did it wasn't good enough, and how dare I make mistakes?</span></span></div><div><span style="font-family: arial; font-size: medium;"><br /></span></div><div><span style="font-family: arial; font-size: medium;">Without a word, I got up from the table and left the restaurant. I went outside to take a walk so I could calm down and gather my thoughts. But at that moment, I was filled with rage at myself. I thought something along the lines of, "You fucking asshole. You ruined your cousin's important moment and humiliated her aunt in front of everybody. You are just beyond callous, aren't you? You never learn from your mistakes and you just keep fucking up."</span></div><div><span style="font-family: arial; font-size: medium;"><br /></span></div><div><span style="font-size: medium;"><span style="font-family: arial;">Of course, my cousin kept trying to follow me, but I ignored her. I did find out later that after I walked out my cousin's aunt looked at my mom in confusion and said something like, "What was that about?" Mom, who at long last was beginning to understand the idea of me having a proverbial raw exposed nerve and reacting not to a mild stimulus but a series of things, said, "You don't understand," and then explained it to her. </span><span style="font-family: arial;">Unfortunately, when Dad found me, he was a little pissed off. He told me to grow up and go back inside. </span></span></div><div><span style="font-family: arial; font-size: medium;"><br /></span></div><div><span style="font-size: medium;"><span style="font-family: arial;">A similar, frustrating incident happened last year during a Zoom call from my cousin's house in Providence to my parents' and my cousins' parents. I was at my cousin's house instead of at my parents' for </span><span style="font-family: arial;">Chanukah/Christmas because of the pandemic. Without regurgitating</span><span style="font-family: arial;"> the entire story, I will say that I once again removed myself from a situation that became upsetting. I went upstairs to the guest room to calm down. I texted my mother and told her to call me after the Zoom call was over. When I got on the phone with her, I told her, "I'm not having one of these big Kumbaya Zoom calls anymore. If you want to have them with the rest of the family, go ahead. But I won't be there. I don't like them, they're not enjoyable for me, and they feel like a chore. It's you and Aunt Janice doing all the talking and whenever I try to get a word in edgewise, people talk over me." We had had several large group Zoom calls since the beginning of the pandemic, and while they didn't upset me like the Christmas one did, they largely did feel like a chore and weren't enjoyable. Mom said she understood and respected my decision.</span></span></div><div><span style="font-family: arial; font-size: medium;"><br /></span></div><div><span style="font-family: arial; font-size: medium;">I have said in previous blog posts that my meltdowns (or pre-meltdowns, in these stories?) are largely under control, but when they do happen it's almost exclusively around family. This is true. Had the Thanksgiving 2014 episode happened among another group of people, I might have felt a little embarrassed but not felt it as intensely as I did that day. I wouldn't have felt the need to get up and leave. On Christmas 2020, had I been in a Zoom call with the same number of people, but people who weren't my family, I would have shrugged everything off. In fact, in spring of 2020 I participated in a Zoom call with about ten other people from the camp in Michigan I worked at in the early 2000s. There was a lot of people talking over each other, and it didn't feel personal or anxiety-inducing. Why? Context is important. Unfortunately, even the most well-meaning of family can push my buttons, and this has largely to do with the fact that they've known me for so long and that, in some ways, they sometimes still have a perception of me of when I was a kid that hasn't completely changed. In the Zoom call for example, even if those who were talking over me weren't doing it on purpose (and they probably weren't), there's still a lot of baggage that makes it feel personal. When I was a kid, my parents and brother sometimes deliberately ignored me if I made some stupid wisecrack or if they thought I was talking about something that wasn't "age appropriate", for example. The talking over me during the Zoom call felt like a throwback to that. I've seen a lot of adults on the autism spectrum make similar comments about baggage with their family who is, in most cases, very well-meaning, but took decades to finally understand them.</span></div><div><span style="font-family: arial; font-size: medium;"><br /></span></div><div><span style="font-size: medium;"><span style="font-family: arial;">A number of therapists I have talked to over the past fifteen years or so told me that I need to tell my parents and others that they need to just let me remove myself from situations like the aforementioned so I can calm down. They need to let go of the idea that I have to be there to show how "mature" I am. They need to understand that I am engaging in self-care and also preventing a possible meltdown. U</span><span style="font-family: arial;">nfortunately, it's a hard lesson to learn because people automatically think that when somebody gets up to walk away from a humiliating or otherwise frustrating situation, it's an implicit invitation to follow. With kids it's seen as a ploy for attention, to get others to follow and reassure them... and with adults... well, I don't know. They probably slap the <a href="https://eccentricsunited.blogspot.com/2021/11/is-it-ableism-part-8-immaturity-or-blog.html" target="_blank">"immature"</a> label on it.</span></span></div><div><span style="font-family: arial; font-size: medium;"><br /></span></div><div><span style="font-family: arial; font-size: medium;">Autistic people (and others-- let's be real; this probably doesn't happen to just us) need to be allowed to leave a situation, whether it's for reasons I just related or whether it has to do with sensory overload that some of my brethren describe. Or for a variety of other reasons. Bottom line: We might have "unusual" needs, but they are real, and you have to listen with an open mind when we tell you what they are.</span></div><div><span style="font-family: arial; font-size: medium;"><br /></span></div><div><span style="font-family: arial; font-size: medium;">Whew! In eleven blog posts we've covered so much ground. <a href="https://eccentricsunited.blogspot.com/2021/11/is-it-ableism-part-12-its-complicated.html" target="_blank">We'll wrap it all up in the next and final post.</a></span></div>Unknownnoreply@blogger.com1tag:blogger.com,1999:blog-1773356771647520694.post-26028356927335669172021-11-06T22:52:00.007-04:002021-11-20T23:23:08.268-05:00Is It Ableism? Part 10: Challenging Comfort Zones<p><i><span style="font-family: arial; font-size: medium;">Links to previous installments in this series:</span></i></p><p><i><span style="font-family: arial; font-size: medium;"><a href="https://eccentricsunited.blogspot.com/2021/10/is-it-ableism-part-1-revisiting-dark.html" target="_blank">Part 1: Revisiting the Dark Ages</a></span></i></p><p><i><span style="font-family: arial; font-size: medium;"><a href="https://eccentricsunited.blogspot.com/2021/10/is-it-ableism-part-2-obvious.html" target="_blank">Part 2: Obvious Definitions of Ableism</a></span></i></p><p><i><span style="font-family: arial; font-size: medium;"><a href="https://eccentricsunited.blogspot.com/2021/10/is-it-ableism-part-3-defining-disability.html" target="_blank">Part 3: Defining Disability</a></span></i></p><p><i><span style="font-family: arial; font-size: medium;"><a href="https://eccentricsunited.blogspot.com/2021/10/is-it-ableism-part-4-internalized.html" target="_blank">Part 4: Internalized Ableism</a></span></i></p><p><i><span style="font-family: arial; font-size: medium;"><a href="https://eccentricsunited.blogspot.com/2021/10/is-it-ableism-part-5-is-overcoming.html" target="_blank">Part 5: Is "Overcoming" Worth It?</a></span></i></p><p><i><span style="font-family: arial; font-size: medium;"><a href="https://eccentricsunited.blogspot.com/2021/10/is-it-ableism-part-6-accommodation.html" target="_blank">Part 6: Accommodation</a> </span></i></p><p><i><span style="font-family: arial; font-size: medium;"><a href="https://eccentricsunited.blogspot.com/2021/11/is-it-ableism-part-7-infantilization.html" target="_blank">Part 7: Infantilization</a></span></i></p><p><i><span style="font-family: arial; font-size: medium;"><a href="https://eccentricsunited.blogspot.com/2021/11/is-it-ableism-part-8-immaturity-or-blog.html" target="_blank">Part 8: Immaturity or "The Blog Post Where I Have a Meltdown"</a></span></i></p><div><i><span style="font-family: arial; font-size: medium;"><a href="https://eccentricsunited.blogspot.com/2021/11/is-it-ableism-part-9-unintentional.html" target="_blank">Part 9: Unintentional Gaslighting</a></span></i></div><div><i><span style="font-size: medium;"><br /></span></i></div><div><i><span style="font-size: medium;"><br /></span></i></div><div><span style="font-family: arial; font-size: medium;">I have already covered quite a bit in this series, which is nearing the end (I anticipate twelve installments). In the last post, I discussed unintentional gaslighting, in which well-meaning people who want to help end up causing someone else (usually autistic) to doubt their own experiences and perceptions. In reference to anxiety-inducing situations, I vaguely alluded to the idea of pushing one's comfort zone as well as the potential limits of that. Not the smoothest segue, but I needed to get here somehow, and this very-sticky topic needs to be covered.</span></div><div><span style="font-family: arial; font-size: medium;"><br /></span></div><div><span style="font-size: medium;"><span style="font-family: arial;"><a href="https://eccentricsunited.blogspot.com/2021/10/is-it-ableism-part-1-revisiting-dark.html" target="_blank">Part 1</a> and <a href="https://eccentricsunited.blogspot.com/2021/10/is-it-ableism-part-5-is-overcoming.html" target="_blank">Part 5</a>, I talked about the idea that autism is something that needs to be accepted and accommodated, not something for autistic people to "overcome." We would never tell a wheelchair user that they needed to "overcome" their disability and learn to walk, would we? No. However, the brain is more complex and pliable than a pair of legs; it is constantly evolving throughout the person's life. Like autism, another neurodevelopmental disability-- dyslexia-- exists on a spectrum. </span><span style="font-family: arial;">A typically-developing child who can only recognize her own name in writing at age four is most likely comfortably reading middle-grade novels at age ten.</span><span style="font-family: arial;"> Perhaps a dyslexic child still couldn't even recognize his own name in writing at age four is still struggling with first-grade level books at age ten. A child with severe dyslexia might never learn how to read and will need to listen to audiobooks.* The problem is, others don't necessarily know where on the spectrum the kid falls, and the kid might not even know themselves. So what do we do? We challenge their comfort zones to see what they're capable of and help their brain evolve. </span></span></div><div><span style="font-family: arial; font-size: medium;"><br /></span></div><div><span style="font-family: arial; font-size: medium;">Right now I can hear the accusations of ableism coming in because I even suggested challenging people's comfort zones. In fact, I wager I'm going to lose a huge part of my audience from this blog post. Well, as I said, the brain is forever evolving. It's a good idea to challenge people's comfort zones to facilitate that evolution, but also realize the potential limitations of doing so. The goal should never be to make someone with a neurodevelopmental disability "indistinguishable" from their typically-developing peers. Giving a chemistry textbook to a fourteen-year-old who struggled with first-grade literature when he was ten is not going to be helpful. Instead, you might give this kid the first <i>Harry Potter</i> book.** If <i>Harry Potter</i> turns out to be too difficult, don't force the issue; give him something easier. It's a challenge to the kid's comfort zone, but also a form of accommodation.</span></div><div><span style="font-family: arial; font-size: medium;"><br /></span></div><div><span style="font-family: arial; font-size: medium;">How does this translate to autism? Unfortunately, growing up I felt like my parents tried the autism equivalent of giving a chemistry book to a dyslexic child. Like many people on the autism spectrum, I have <a href="https://en.wikipedia.org/wiki/Prosopagnosia" target="_blank">prosopagnosia</a>, which sometimes makes it difficult for me to follow what I'm watching in live-action movies. Unfortunately, prosopagnosia was something I also wasn't identified with during childhood. When I was fourteen, my mom-- an English teacher-- seemed to think that the answer to this difficulty was not to show me something with adult themes that was palatable to me-- <i><a href="https://en.wikipedia.org/wiki/Stand_by_Me_(film)" target="_blank">Stand by Me</a>, </i>a very adult movie with kids as main characters, seems like an obvious choice in retrospect-- but to take me to a <a href="https://en.wikipedia.org/wiki/Black_box_theater" target="_blank">black box production</a> of Shakespeare's <i>Macbeth</i>, in which a few actors played multiple parts and didn't even wear any costumes. It didn't help. I couldn't follow the story, and at the end I just felt stupid and that there was something wrong with me for not having the gushing reaction that Mom expected. This felt like being thrown in the deep end of a pool and being told I'd better learn to swim.</span></div><div><span style="font-family: arial; font-size: medium;"><br /></span></div><div><span style="font-family: arial; font-size: medium;">Many people on the spectrum have reported similar attitudes from others about making eye contact. While my discomfort with eye contact was limited to unfamiliar adults and was something I naturally moved past around adolescence, many people in autism groups on Facebook have talked about finding eye contact not uncomfortable, but literally painful-- and no amount of intervention changed anything. Some of them even discussed being traumatized by repeated episodes of pressured, forced eye contact. With today's knowledge about autism, it would make sense to look at each kid individually and see what their potential is and what their limitations are. For me and others like me, perhaps making eye contact with a teacher into a fun game would have helped me become comfortable with this task earlier than I did. Some, however, might recoil at this game, no matter how much fun <i>you</i> think it is, and just not be able to do it. In that case, it's time for you to provide more accommodation, in the form of accepting that the kid-- or adult, if eye contact doesn't improve-- cannot make eye contact. Allow them to show you in their own way that they're listening. Maybe this could be in the form of the person holding up a hand. In any case, the autistic person needs to be the one to decide what that gesture is.</span></div><div><span style="font-family: arial; font-size: medium;"><br /></span></div><div><span style="font-family: arial; font-size: medium;">Most importantly, accept that someone's improvement in a skillset is going to improve (or not) at the rate that it's going to improve at, regardless of what you think is acceptable.</span></div><div><span style="font-family: arial; font-size: medium;"><br /></span></div><div><span style="font-family: arial; font-size: medium;">Oh, what's that? Only we have to have our comfort zones challenged, because we're "broken", right? Wrong. <i>Everybody</i> needs to have their comfort zones challenged, <i>whether or not they have a disability.</i> In fact, I think one of the biggest mistakes we make as a society is not regularly challenging kids for whom everything is easy. Maybe a child grew up always being the smartest person in all his classes and everyone-- including him-- knew it. He was enrolled in AP Calculus and spent all evening with his girlfriend instead of doing his homework. No problem! The next day at school he did his homework during lunch, less than an hour before math class, and got all the problems right. He did this all the time, and even graduated as valedictorian. </span></div><div><span style="font-family: arial; font-size: medium;"><br /></span></div><div><span style="font-family: arial; font-size: medium;">Perhaps this person was so used to everything coming easily to him and was so used to being the big fish that when he began his freshman year at Princeton University, he discovered that this was no longer the case. Everyone around him was a "big fish" from wherever they came. The coursework was more difficult than he anticipated, and for the first time in his life something wasn't easy for him. This person's comfort zone should have been challenged more when he was growing up to prepare him for meeting others like him. Maybe he should have been enrolled in more challenging math classes at a local community college. Or, perhaps this person didn't draw well, and giving him art lessons in high school would have been a good way to challenge his comfort zone and show him that sometimes new skills aren't easy. </span></div><div><span style="font-family: arial; font-size: medium;"><br /></span></div><div><span style="font-family: arial; font-size: medium;">So at the end of the day, all of us-- autistic, neurotypical, highly intelligent, learning disabled, etc.-- need to have our comfort zones challenged so that the brain evolves-- within reason, and in a way that's accommodating and understanding to the individual. For the neurotypicals reading this, I remind you not to be infantilizing when you're helping someone on the spectrum challenge their comfort zones. Make it a team effort, not something that seems to them like you assuming you know what's best for them because you're neurotypical.</span></div><div><span style="font-family: arial; font-size: medium;"><br /></span></div><div><span style="font-family: arial; font-size: medium;">Of course, it's also important that we on the spectrum advocate for ourselves and make our needs heard.***</span></div><div><span style="font-family: arial; font-size: medium;"><br /></span></div><div><span style="font-family: arial; font-size: medium;"><a href="https://eccentricsunited.blogspot.com/" target="_blank">See you next time.</a></span></div><div><span style="font-family: arial; font-size: medium;"><br /></span></div><div><span style="font-family: arial; font-size: medium;"><i>*I don't know much about dyslexia and if I'm getting anything wrong, I invite others to correct me on the scenarios I'm presenting.</i></span></div><div><span style="font-family: arial; font-size: medium;"><i>**I have heard stories about kids with dyslexia improving their reading skills because they were so determined to read </i>Harry Potter<i>!</i></span></div><div><span style="font-family: arial; font-size: medium;"><i>***I realize that for many people this might not be easy. Perhaps it's another challenge to their comfort zone, one that a trusted friend or relative can help them with.</i></span></div><div><span style="font-family: arial; font-size: medium;"><br /></span></div>Unknownnoreply@blogger.com0tag:blogger.com,1999:blog-1773356771647520694.post-26012006927118783662021-11-06T21:21:00.007-04:002021-11-08T20:14:10.569-05:00Is It Ableism? Part 9: Unintentional Gaslighting<p><i style="font-size: large;"><span style="font-family: arial;">Links to previous installments in this series:</span></i></p><p><i><span style="font-family: arial; font-size: medium;"><a href="https://eccentricsunited.blogspot.com/2021/10/is-it-ableism-part-1-revisiting-dark.html" target="_blank">Part 1: Revisiting the Dark Ages</a></span></i></p><p><i><span style="font-family: arial; font-size: medium;"><a href="https://eccentricsunited.blogspot.com/2021/10/is-it-ableism-part-2-obvious.html" target="_blank">Part 2: Obvious Definitions of Ableism</a></span></i></p><p><i><span style="font-family: arial; font-size: medium;"><a href="https://eccentricsunited.blogspot.com/2021/10/is-it-ableism-part-3-defining-disability.html" target="_blank">Part 3: Defining Disability</a></span></i></p><p><i><span style="font-family: arial; font-size: medium;"><a href="https://eccentricsunited.blogspot.com/2021/10/is-it-ableism-part-4-internalized.html" target="_blank">Part 4: Internalized Ableism</a></span></i></p><p><i><span style="font-family: arial; font-size: medium;"><a href="https://eccentricsunited.blogspot.com/2021/10/is-it-ableism-part-5-is-overcoming.html" target="_blank">Part 5: Is "Overcoming" Worth It?</a></span></i></p><p><i><span style="font-family: arial; font-size: medium;"><a href="https://eccentricsunited.blogspot.com/2021/10/is-it-ableism-part-6-accommodation.html" target="_blank">Part 6: Accommodation</a> </span></i></p><p><i><span style="font-family: arial; font-size: medium;"><a href="https://eccentricsunited.blogspot.com/2021/11/is-it-ableism-part-7-infantilization.html" target="_blank">Part 7: Infantilization</a></span></i></p><p><i><span style="font-family: arial; font-size: medium;"><a href="https://eccentricsunited.blogspot.com/2021/11/is-it-ableism-part-8-immaturity-or-blog.html" target="_blank">Part 8: Immaturity or "The Blog Post Where I Have a Meltdown"</a></span></i></p><p><i><span style="font-family: arial; font-size: medium;"><br /></span></i></p><p><i><span style="font-family: arial; font-size: medium;">As always, names are changed.</span></i></p><div><span style="font-family: arial; font-size: medium;">In <a href="https://eccentricsunited.blogspot.com/2021/11/is-it-ableism-part-7-infantilization.html" target="_blank">Part 7</a>, I talked about how autistic people are often infantilized. In <a href="https://eccentricsunited.blogspot.com/2021/11/is-it-ableism-part-8-immaturity-or-blog.html" target="_blank">Part 8</a>, I discussed how the actions of autistic people-- particularly meltdowns-- are dismissed as "immature." Meltdowns are often the result of a cascade of overwhelming and complex emotions and are not a question of maturity; how can it be when it's something that most people don't deal with at any age? </span></div><div><span style="font-family: arial; font-size: medium;"><br /></span></div><div><span style="font-family: arial; font-size: medium;">Many of us on the autism spectrum have commented on having had our emotions, experiences, and perceptions invalidated, either when growing up, as adults, or both. At some point in the past few years, I began referring to these attitudes from other people as "unintentional gaslighting." As it turns out, many other people have independently come up with this term, and now it is commonly used in autism communities. So what is it exactly? Well, let's start by going over the definition of "gaslighting".</span></div><div><span style="font-family: arial; font-size: medium;"><br /></span></div><div><span style="font-family: arial; font-size: medium;">"Gaslighting" is when someone purposely makes another person doubt their own perception of reality, and it is often used in abusive relationships. Here's an extreme example where an emotionally abusive husband, Steven, might gaslight his wife, Holly: Holly comes home one day to see Steve making out with another woman. Holly calls out Steve for cheating on her. However, after the other woman goes home, Steve assures Holly that the woman was just a client, but that she stopped breathing because of some medical issue and he had to give her CPR. Steve might even say, "I don't know where you come up with this stuff. You let your imagination run away with you and then you overreact. You'd better stop it if you want this marriage to last." Even though Holly knows what she saw, Steve has a way of manipulating her into doubting even her clearest observations. She is eventually convinced that her imagination did run away with her, and she was just overreacting.</span></div><div><span style="font-family: arial; font-size: medium;"><br /></span></div><div><span style="font-family: arial; font-size: medium;">So what is <i>unintentional</i> gaslighting? It's exactly what it sounds like: making people doubt their own perception of reality, but for well-intentioned reasons. It often happens to autistic people simply because they are autistic. Because we interact with the world differently, and occasionally misinterpret situations, people often perceive us as being largely out of touch with reality, needing our neurotypical counterparts to explain even the most basic things to us. Even if we know exactly what we just experienced, family, friends, and others will tell us we were wrong, and we eventually begin to doubt our own perceptions. It feels like gaslighting, but the behavior is well-meaning and unintentional. That doesn't make it any less frustrating, however. </span></div><div><span style="font-family: arial; font-size: medium;"><br /></span></div><div><span style="font-family: arial; font-size: medium;">Here's an example from my own life: </span></div><div><span style="font-family: arial; font-size: medium;"><br /></span></div><div><span style="font-family: arial; font-size: medium;">In the spring of 1995, at age 14, I had been seeing my therapist, Dr. Klein, for about three years. I eventually decided to stop seeing him because it was becoming abundantly clear that he was unable to help, and he just didn't understand me. During our last session, he asked if I wanted to see my diagnosis. I thought, "After three years, he finally knows what this is?" Dr. Klein handed me a 3x5 index card, on which he had written, "Difficulty interacting with peers and adapting to new situations."* To this day, I have no idea what he meant by "difficulty adapting to new situations", seeing as how I tried new things all the time-- I was actually getting ready to go to overnight camp that summer, and that was my idea! The example of unintentional gaslighting comes in at the following exchange, which I have recreated to the best of my memory:</span></div><div><span style="font-family: arial; font-size: medium;"><br /></span></div><div><span style="font-family: arial; font-size: medium;">Me: What do you mean "difficulty adjusting to new situations?" I don't have a hard time adjusting to new situations!</span></div><div><span style="font-family: arial; font-size: medium;">Dr. Klein: What about the social problems you have with your peers?</span></div><div><span style="font-family: arial; font-size: medium;">Me: Being made fun of and hit is me having "difficulty adjusting to new situations?"</span></div><div><span style="font-family: arial; font-size: medium;">Dr. Klein: Well, it seems you overreact to things and get into conflicts with other kids far too often.</span></div><div><span style="font-family: arial; font-size: medium;"><br /></span></div><div><span style="font-family: arial; font-size: medium;">Oh, my God, where do I even <i>start</i>?</span></div><div><span style="font-family: arial; font-size: medium;"><br /></span></div><div><span style="font-family: arial; font-size: medium;">Aside from the obvious victim-blaming (which is another topic for another day), the unintentional gaslighting here was when Dr. Klein told me that I overreacted to situations where other kids bullied me. I had told Dr. Klein dozens of stories about kids spreading rumors about me, humiliating me in front of others, and physically assaulting me; in one case, a girl pinned me to the wall and tried to strangle me because she thought I had been flirting with her boyfriend. My peers were emotionally abusing me, but unfortunately back then bullying wasn't seen as a form of emotional abuse. It was just "part of growing up." And because it happened as often as it did, Dr. Klein obviously came to the conclusion that I was exaggerating and overreacting to the situations I related to him.</span></div><div><span style="font-family: arial; font-size: medium;"><br /></span></div><div><span style="font-family: arial; font-size: medium;">When I told my current therapist this story, he was shocked, and told me that even in the 1990s he would have never said something like that to a kid he was working with. Do people-- autistic <i>and</i> neurotypical-- overreact sometimes? Sure. But when the "overreaction" is something that's happening consistently, there's obviously something deeper going on: at best, it means that the person in question suffers from severe anxiety that might have nothing to do with external factors; at worst, things are really as bad as the person says and the anxiety follows. In my case, it was the latter.</span></div><div><span style="font-family: arial; font-size: medium;"><br /></span></div><div><span style="font-family: arial; font-size: medium;">Unfortunately, a lot of us on the spectrum have similar stories about such unintentional gaslighting. One that I often hear is from people with sensory issues. They might complain about bright fluorescent lights, only to have friends and family tell them, "Oh, it's not that bad," as if that will make them reconsider how the bright fluorescent lights are affecting them. Well, they are obviously "that bad" to the person with sensory issues!</span></div><div><span style="font-family: arial; font-size: medium;"><br /></span></div><div><span style="font-family: arial; font-size: medium;">In a personal "it's not <i>that</i> bad" incident that I experienced, when I was in fifth grade and joining the school band to play the saxophone, my music teacher told us that we were supposed to go into the kindergarten room the next day and pick up our instrument. Even though the room would be filled with little kids, I was anxious about walking into a room with a group of random people to get my saxophone. I expressed my anxiety to my parents, saying something like, "I'm faced with a real problem." Dad sighed in exasperation and said, "Oh, boy, here we go again. Every day it's the same thing." Around that time in my life, Dad often told me that he felt I was "looking for problems" and "making a big deal out of nothing." Well, it obviously wasn't "nothing" to me!**</span></div><div><span style="font-family: arial; font-size: medium;"><br /></span></div><div><span style="font-family: arial; font-size: medium;">Telling people they are "making a big deal out of nothing" or "it's not <i>that</i> bad" does not help the situation. Also, why would anybody "look for problems?" As I've said, sure, people can overreact, but if these seemingly "little" things are a big deal to someone-- autistic or not-- there is obviously something bigger going on, especially if there is a pattern of such reactions. I think that we as a society are getting better-- albeit slowly-- at listening and not being dismissive like this. But people need to continue listening and learning that some brains just work differently. They need to do better at validating our experiences even if they don't understand them. If something is "that bad" to someone, accept it and help them work through it to the best of their ability, but also keep in mind that they might not be able to work through it, depending on the person and depending on the issue.</span></div><div><span style="font-family: arial; font-size: medium;"><br /></span></div><div><span style="font-family: arial; font-size: medium;">And here I'm going to awkwardly segue into the next installment, which is about challenging one's comfort zones, and any limitations of that. <a href="https://eccentricsunited.blogspot.com/2021/11/is-it-ableism-part-10-challenging.html" target="_blank">Stay tuned.</a></span></div><div><span style="font-family: arial; font-size: medium;"><br /></span></div><div><span style="font-family: arial; font-size: medium;"><br /></span></div><div><span style="font-family: arial; font-size: medium;"><br /></span></div><div><span style="font-family: arial; font-size: medium;"><i>*These are symptoms, not a diagnosis!</i></span></div><div><span style="font-family: arial; font-size: medium;"><i>**Fortunately, the kindergarten room was empty when I went to get my saxophone that day!</i></span></div>Unknownnoreply@blogger.com1tag:blogger.com,1999:blog-1773356771647520694.post-11118054419904093102021-11-04T00:37:00.006-04:002021-11-06T21:22:19.005-04:00Is It Ableism? Part 8: Immaturity or "The Blog Post Where I Have a Meltdown"<p><span style="font-size: medium;"><i><span style="font-family: arial;">Links to previous installments in this series:</span></i></span></p><p><i><span style="font-family: arial; font-size: medium;"><a href="https://eccentricsunited.blogspot.com/2021/10/is-it-ableism-part-1-revisiting-dark.html" target="_blank">Part 1: Revisiting the Dark Ages</a></span></i></p><p><i><span style="font-family: arial; font-size: medium;"><a href="https://eccentricsunited.blogspot.com/2021/10/is-it-ableism-part-2-obvious.html" target="_blank">Part 2: Obvious Definitions of Ableism</a></span></i></p><p><i><span style="font-family: arial; font-size: medium;"><a href="https://eccentricsunited.blogspot.com/2021/10/is-it-ableism-part-3-defining-disability.html" target="_blank">Part 3: Defining Disability</a></span></i></p><p><i><span style="font-family: arial; font-size: medium;"><a href="https://eccentricsunited.blogspot.com/2021/10/is-it-ableism-part-4-internalized.html" target="_blank">Part 4: Internalized Ableism</a></span></i></p><p><i><span style="font-family: arial; font-size: medium;"><a href="https://eccentricsunited.blogspot.com/2021/10/is-it-ableism-part-5-is-overcoming.html" target="_blank">Part 5: Is "Overcoming" Worth It?</a></span></i></p><p><i><span style="font-family: arial; font-size: medium;"><a href="https://eccentricsunited.blogspot.com/2021/10/is-it-ableism-part-6-accommodation.html" target="_blank">Part 6: Accommodation</a> </span></i></p><p><i><span style="font-family: arial; font-size: medium;"><a href="https://eccentricsunited.blogspot.com/2021/11/is-it-ableism-part-7-infantilization.html" target="_blank">Part 7: Infantilization</a></span></i></p><p><span style="font-family: arial; font-size: medium;">In my last post, I discussed the fine line between accommodation and infantilization. Infantilization is just a symptom of the bigger picture of how many of us are viewed, and that can be summed up in the word "immature."</span></p><p><span style="font-family: arial; font-size: medium;">Many of us who came of age before the 21st century grew up hearing the word "immature", to describe them (and let's be real, some autistic kids growing up today likely do too). And many people, myself included, are sick to death of it. Fortunately, I rarely hear it these days, but I strongly suspect that's <a href="https://eccentricsunited.blogspot.com/2021/10/is-it-ableism-part-1-revisiting-dark.html" target="_blank">more to do with rigorous training in "overcoming" coupled with an accident of nature as to just what my autism profile looks like</a> than improved understanding on the part of neurotypicals in my life.</span></p><p><span style="font-family: arial; font-size: medium;">Right now I can hear someone saying, "Oh, well if their social skills are underdeveloped, isn't it right to call them immature?" </span></p><p><span style="font-family: arial; font-size: medium;">Oh, my God, where do I even <i>start</i>? </span></p><p><span style="font-family: arial; font-size: medium;">Maybe it would be fine if not for the baggage that the word carries and the fact that people usually use it to reprimand others. Let me elucidate with an analogy: Would you ever call someone with an intellectual disability "stupid"? No, you wouldn't, and most people would consider you an asshole if you did. Why? Because it is not a neutral descriptor for people with intellectual disabilities, but rather a crass, dismissive word with a lot of baggage. When people use the word "stupid" these days, they use it for someone with average or above average intelligence who is acting willfully ignorant or foolish. For example, you might call an adult "stupid" for running a red light. You might call a teenager "stupid" for trying cocaine. You might call your neighbor "stupid" for saying that homosexuality is a mental illness. But when you do so, you are reprimanding them; the understanding is inherent that these people should have known better. In fact, it's certain that they <i>did</i> know better but <i>didn't care</i>. </span></p><p><span style="font-family: arial; font-size: medium;">To call someone with an intellectual disability "stupid" dismisses the very real cognitive limitations that are beyond their control for a variety of complex neurobiological reasons. It also carries the implication that they somehow made themselves that way and don't deserve to be treated with respect. In fact, I think it would be ableist to call someone with an intellectual disability "stupid." At the very least, it's tactless.</span></p><p><span style="font-family: arial; font-size: medium;">I would like to present the argument that the same could be said about the word "immature" for autistic people. Before I continue, I want to emphasize that I don't want to be the "word police" and insist that anybody who uses the word "immature" is guilty of ableism. It's this kind of orthodoxy that I want to avoid. Let's just consider and discuss the issue.</span></p><p><span style="font-size: medium;"><span style="font-family: arial;">"Immature" is used in a similar manner as "stupid," to reprimand someone for an attitude or action when they certainly knew better. We might call a teenager "immature" for playing video games in his room during a family gathering. </span><span style="font-family: arial;">We might call an adult "immature" for changing the channel to a football game without asking the others who were watching a movie if it was okay to do so.</span><span style="font-family: arial;"> </span><span style="font-family: arial;">We might call a ten-year-old child "immature" for screaming and throwing things because her parents wouldn't buy the American Girl doll they promised her for her birthday. In the case of neurotypical people engaging in such behaviors, it is probably safe to say that these were the behaviors of someone acting entitled or selfish, and it would be okay to use the word "immature" to reprimand them.</span></span></p><p><span style="font-size: medium;"><span style="font-family: arial;">However, an autistic person could do these exact same things for very different reasons. The teenager playing video games in his room during a family gathering might be trying to get away from the overwhelming crowd and loud noises. The adult who changed the channel to a football game might have missed the cue that everyone else was engaged in the movie. And yes, the ten-year-old girl's reaction to not getting a doll she wanted can also be the result of something more complex than <a href="https://www.youtube.com/watch?v=5wAlQf4WdiE" target="_blank">Veruca Salt-style selfishness</a> and entitlement. In fact, her behavior that people might be quick to label "immature" is not a temper tantrum, but what is known in the world of autism as a <i>meltdown</i>. </span><span style="font-family: arial;">Before you, dear reader, accuse me of getting into semantics, let me explain </span><a href="https://www.psychologytoday.com/us/blog/what-say-next/202105/what-is-the-difference-between-meltdown-and-tantrum" style="font-family: arial;" target="_blank">the critical difference between a temper tantrum and a meltdown.</a><span style="font-family: arial;"> They are indeed very different, even if they look the same on a superficial level.</span></span></p><p><span style="font-family: arial; font-size: medium;">A temper tantrum is something that young children do to manipulate a situation and get what they want. A neurotypical child might throw a temper tantrum when her parents won't buy her the doll she wanted, and she hopes her actions will make them yield to her demands; she is very much in control of her behavior, at least to a degree. After several firm "no"s and, hell, a half hour to calm down, she'll forget about it and go on with her life. </span></p><p><span style="font-size: medium;"><span style="font-family: arial;">A meltdown, on the other hand, is the result of being so overwhelmed by strong emotions, of a brain that experiences life more intensely than its neurotypical counterparts, that the person loses control. While it might be difficult to appreciate why a ten-year-old girl could experience such strong emotions about a doll, let me remind you that we on the spectrum have a propensity to fixate (which, unfortunately, many people also see as a sign of immaturity instead of different neurological makeup). This hypothetical girl </span><span style="font-family: arial;">has spent the month leading up to her birthday thinking about the doll <i>literally nonstop</i>, something that neurotypical children-- even <i>younger</i> neurotypical children-- generally don't do. When she eventually learns that her parents can't afford to shell out $145 for it, she does not experience a simple disappointment that most kids would feel but something much more intense, a feeling of genuine devastation. She is not angry at her parents for not catering to her whims, but angry at the situation. She is angry at the fact that something she invested so much of her emotional energy in is not coming to fruition. She may even know that her reaction is irrational and also be angry at herself for caring so much about something that she knows other kids her age wouldn't give a second thought about. After having her meltdown, she may even feel ashamed for her behavior but feel helpless for having been unable to control it. </span><span style="font-family: arial;">Imagine, then, after experiencing all these complex thought patterns and self-criticisms, when people around her dismiss her behavior as "immature" and also use the word to describe the sum total of who she is.</span></span></p><p><span style="font-size: medium;"><span style="font-family: arial;">Autistic people --kids and adults-- can have meltdowns for a variety of reasons. </span><span style="font-family: arial;">One catalyst I commonly hear about is </span><span style="font-family: arial;">sensory overload, such as a barrage of loud noises that feel intolerably loud to them. I am not someone with sensory sensitivities, and this was never an issue for me. What triggered my meltdowns growing up and into my twenties (and today, albeit very rarely, and usually around my family where I let my guard down, and these meltdowns are usually in response to old wounds being reopened) was often the result of anxiety that accumulated over the course of hours, days, or sometimes several weeks. The anxiety could be related to trying to make friends in large groups as well as not understanding social situations and not feeling understood in turn. A series of these situations that added to my anxiety often culminated in a meltdown, triggered by something fairly minor. But what people didn't understand was that I was not reacting to that minor thing. It was as if there was a raw, exposed nerve that got brushed one too many times. I wasn't reacting to one thing, but a series of things. It was the </span><i style="font-family: arial;">end result</i><span style="font-family: arial;"> of me trying to keep my stratospheric anxiety contained. </span></span></p><p><span style="font-family: arial; font-size: medium;"></span></p><p><span style="font-family: arial; font-size: medium;">I would always feel deep shame and embarrassment as well as a sense of failure for not being able to prevent the meltdown. What made matters worse were people's reactions and assessments of what they witnessed. Dad often angrily commented, "You need to learn to control your temper!" and sometimes even implied that I was acting on a whim. Other adults labeled my meltdowns as "emotional outbursts" or "temper tantrums" for not getting my way. </span></p><p><span style="font-family: arial; font-size: medium;">The worst part was how people usually dismissed my behavior as "immature" and, by extension, invalidated my emotions, no matter how many different ways I tried explaining myself. I felt like parents, teachers, camp counselors, and others were summing up a reaction to a series of complicated emotions as the whim of someone who refused to handle not getting her way, or who refused to handle common life stressors. When dismissing me as "immature", they were blind to the reality of the complex, intense thoughts that led to the meltdown as well as the complex, intense thoughts that went through my head with promises to myself to control them in the future. Often, I spent copious amounts of time in my head trying to think up strategies to curb future meltdowns. Unfortunately, they rarely worked and only delayed the inevitable. In some ways, the more I tried to control the meltdowns, the worse they became when they finally happened. Why? It was another bit of pressure society put on me that only added to my anxiety, anxiety I felt I was rarely allowed to express. I also felt that people thought I had no idea how I was perceived when these meltdowns happened. Because, hey, I was "immature" and therefore beyond clueless as to how this behavior appeared to others, right? </span></p><p><span style="font-family: arial; font-size: medium;">Wrong. Of course I knew!</span></p><p><span style="font-family: arial; font-size: medium;">In a story that I related <a href="https://eccentricsunited.blogspot.com/2021/06/frustration-anxiety-and-tension-part-2.html" target="_blank">here</a>, when I was eighteen years old I was thrown out of an art class for a fairly minor meltdown, in which in frustration I said "shut up" in response to a teacher's annoying laugh (I meant to say it under my breath; my utterance wasn't intended for her to hear). When my parents picked me up, they were angry with the teacher. But they also told me that a teacher shouldn't have to expect to deal with such behavior from an eighteen-year-old.</span></p><p><span style="font-family: arial; font-size: medium;">I think a good argument could be made that somebody in the 21st century dismissing a meltdown as "immature" or saying that a teacher shouldn't have to expect certain types of behavior of people in a certain age bracket (at least when talking about autistic people) is a form of ableism. Returning to my earlier analogy, I feel that it is ableist to call a kid who struggles intensely with math as "stupid" and it would be pretty lousy to tell the kid, "No teacher should have to expect to go over times tables with a twelfth grader when he should have learned them in third grade." Once again, I don't want to propose this labeling as a form of "orthodoxy" (which I see too much of on Facebook and in social justice circles), but as a discussion worth having and a concept worth thinking about. </span></p><p><span style="font-family: arial; font-size: medium;">I do, however, feel that this form of dismissing autistic people's emotions, no matter how unusual, is not only a form of ableism but also what some of us in the community have come to call "unintentional gaslighting." <a href="https://eccentricsunited.blogspot.com/2021/11/is-it-ableism-part-9-unintentional.html" target="_blank">And yes, that will be the topic for the next blog post.</a></span></p>Unknownnoreply@blogger.com0tag:blogger.com,1999:blog-1773356771647520694.post-82087849259227184122021-11-02T20:46:00.011-04:002021-11-04T00:38:21.521-04:00Is It Ableism? Part 7: Infantilization<p><i><span style="font-family: arial; font-size: medium;">Links to previous installments in this series:</span></i></p><p><i><span style="font-family: arial; font-size: medium;"><a href="https://eccentricsunited.blogspot.com/2021/10/is-it-ableism-part-1-revisiting-dark.html" target="_blank">Part 1: Revisiting the Dark Ages</a></span></i></p><p><i><span style="font-family: arial; font-size: medium;"><a href="https://eccentricsunited.blogspot.com/2021/10/is-it-ableism-part-2-obvious.html" target="_blank">Part 2: Obvious Definitions of Ableism</a></span></i></p><p><i><span style="font-family: arial; font-size: medium;"><a href="https://eccentricsunited.blogspot.com/2021/10/is-it-ableism-part-3-defining-disability.html" target="_blank">Part 3: Defining Disability</a></span></i></p><p><i><span style="font-family: arial; font-size: medium;"><a href="https://eccentricsunited.blogspot.com/2021/10/is-it-ableism-part-4-internalized.html" target="_blank">Part 4: Internalized Ableism</a></span></i></p><p><i><span style="font-family: arial; font-size: medium;"><a href="https://eccentricsunited.blogspot.com/2021/10/is-it-ableism-part-5-is-overcoming.html" target="_blank">Part 5: Is "Overcoming" Worth It?</a></span></i></p><p><i><span style="font-family: arial; font-size: medium;"><a href="https://eccentricsunited.blogspot.com/2021/10/is-it-ableism-part-6-accommodation.html" target="_blank">Part 6: Accommodation</a> </span></i></p><p><span style="font-family: arial; font-size: medium;"><i>Names of people and places changed, as always.</i></span></p><p><span style="font-family: arial; font-size: medium;">In the last post, I discussed the importance of accommodating people with invisible disabilities, and how that such accommodation has been a long time coming for autistic people. Parents, teachers, camp counselors, friends, and employers need to put out the equivalent of a wheelchair ramp for us, and for me that proverbial wheelchair ramp is largely in the form of direct, transparent communication. Unfortunately, there have been many times when people were direct with me but in an infantilizing manner.</span></p><p><span style="font-size: medium;"><span style="font-family: arial;">It's one thing to be talked to like a child when you are in elementary or even middle school. It's another to be talked to that way when you're high school aged or older. It was around that time in my life when I really started to feel like certain people were treating me in an infantilizing manner. I'm immediately brought back to a day on the ropes course at Camp Negev in </span><a href="https://eccentricsunited.blogspot.com/2014/05/the-summer-of-1998.html" style="font-family: arial;" target="_blank">the summer of 1998</a><span style="font-family: arial;">, when I was in the CIT program. While one of the counselors was explaining the instructions for the ropes course element (either the giant ladder or the zip line), I jumped on one of the hanging tires on the tire swing course nearby. My intent was to sit on the tire to listen, but I guess the counselor thought that I was just goofing off. Instead of saying, "Come on, I need you to come over here to listen," which would have been a gentle reminder that was accommodating, she said, "Julie, that's not what we're doing right now," like I was a ten-year-old child who needed to be reprimanded. I remember feeling ashamed and slightly humiliated. The implication of her statement was that she perceived me as someone who needed to be talked to in a way appropriate for a little kid rather than a seventeen-year-old whose brain just happened to be all over the map sometimes. </span></span></p><p><span style="font-family: arial; font-size: medium;">I can recall a number of times when I complained to my brother about one person or another constantly talking to me in ways similar to the aforementioned. His response was always, "Well, then it's obviously something you're doing" or "Are you sure it's not something you're doing?" With a 21st-century understanding of autism, today such a response might be categorized as ableist, and I think rightly so. Before you object, hear me out with this analogy: A kid with a disability that makes math hard for them keeps flunking one test after another. The teacher writes on their test: "We went over this OVER AND OVER AND OVER again in class! This is not how you do math!! You just don't get it!!!" It would be humiliating for that kid, who had put in countless hours of studying all week. It would also be ableist because it wouldn't be acknowledging and accepting the kid's disability and providing accommodations (such as offering extra help). And imagine how ludicrous it would be to tell the kid, "Well it's obviously something you're doing," when they complain about the teacher's comments.</span></p><p><span style="font-size: medium;"><span style="font-family: arial;">There is also a fine line between accommodation and infantilization. In </span><a href="https://eccentricsunited.blogspot.com/2021/10/is-it-ableism-part-6-accommodation.html" style="font-family: arial;" target="_blank">Part 6</a><span style="font-family: arial;">, I talked about my friend Chuck acknowledging and understanding my need for direct communication, to have certain things about our friendship spelled out for me so that I knew we were on the same page. He also said he is giving me more time than most of his other friends, not out of "throwing me a bone" but out of empathy and understanding; that is, he ultimately does it because he wants to. "Throwing me a bone" would be a form of infantilization, something one would do out of pity for the poor, innocent childlike autistic person who can't be expected to have an adult mentality. I would have found that kind of behavior not accommodating, but insulting. </span></span></p><p><span style="font-family: arial; font-size: medium;"></span></p><p><span style="font-family: arial; font-size: medium;">Unfortunately, there is a stereotype that we on the spectrum-- even as adults-- have a childlike innocence and naiveté, and that we're so clueless that we have no idea what's going on around us. At best, we need to be "thrown bones" out of pity, and at worst we need to be talked down to. I feel that requests for accommodation that aren't obvious, such as a wheelchair ramp, are seen as the demands of a needy child who can't just "deal with it."</span></p><div><span style="font-family: arial; font-size: medium;">For example, one of my friends on the spectrum (they/them) is unable to drive due to poor gross motor skills and reaction time. They have their license, but they totaled their car during their first time out on the road. Driving carries some inherent risk, but for my friend it carries monumental risk and so it is not worth it for them to "keep trying" (unless they want to, of course) but rather accept that this is something that they cannot do. In fact, many people on the spectrum either (like me) take a very long time to learn to drive or (like my friend) are never able to learn. Because driving is seen as a rite of passage to adulthood, not being able to drive due to an "invisible" disability is seen by many as a mark of immaturity, as failure to grow up and take responsibility, as refusal to even try. To my knowledge, there are only special transportation services for people with obvious physical disabilities, such as blindness. Such a service, however, would be very beneficial to people like my friend.</span></div><p><span style="font-size: medium;"><span style="font-family: arial;">What about people on the spectrum who have sensory sensitivities? While this was never an issue for me, some of us need to be given a separate work environment, away from florescent lights and loud sounds. </span><span style="font-family: arial;">"Oh, but it's not fair to the others." Like Richard Lavoie said in the video that I cited in </span><a href="https://eccentricsunited.blogspot.com/2021/10/is-it-ableism-part-6-accommodation.html" style="font-family: arial;" target="_blank">Part 6</a><span style="font-family: arial;">, it has nothing to do with the others. Maybe others would </span><i style="font-family: arial;">prefer</i><span style="font-family: arial;"> to work in a separate room, but someone with sensory issues </span><i style="font-family: arial;">has</i><span style="font-family: arial;"> to work in a separate room. Unfortunately, I feel that people who need this type of accommodation are often seen as picky, needy children who can't just suck it up like everyone else apparently is (when the reality is "everyone else" simply doesn't have sensory sensitivities and so there is nothing for them to "suck up"). </span></span></p><p><span style="font-family: arial; font-size: medium;">The aforementioned types of infantilization, even well-intended bone-throwing, are beyond humiliating. Unfortunately, I feel that society at large sees us as children in adult bodies, children who are just beyond clueless. We are often stamped with a word I am so fucking sick to death of, and it's worth having a discussion as to whether this word is ableist. </span></p><p><span style="font-family: arial; font-size: medium;">That word is "immature." </span></p><p><span style="font-family: arial; font-size: medium;"><a href="https://eccentricsunited.blogspot.com/2021/11/is-it-ableism-part-8-immaturity-or-blog.html" target="_blank">Stay tuned.</a></span></p><p><span style="font-size: medium;"><br /></span></p><p><span style="font-size: medium;"><br /></span></p><p><span style="font-size: medium;"><br /></span></p><p><span style="font-family: arial; font-size: medium;"><br /></span></p><p><span style="font-family: arial; font-size: medium;"><br /></span></p>Unknownnoreply@blogger.com0tag:blogger.com,1999:blog-1773356771647520694.post-54168932739998852102021-10-29T23:58:00.021-04:002021-11-10T13:03:49.524-05:00Is It Ableism? Part 6: Accommodation<p><span style="font-family: arial; font-size: medium;"><i>As always, names of people are changed (except in the case of Richard Lavoie).</i></span></p><p><span style="font-family: arial; font-size: medium;"><i>Links to previous installments in this series:</i></span></p><p><span style="font-family: arial; font-size: medium;"><i><a href="https://eccentricsunited.blogspot.com/2021/10/is-it-ableism-part-1-revisiting-dark.html" target="_blank">Part 1: Revisiting the Dark Ages</a></i></span></p><p><i><a href="https://eccentricsunited.blogspot.com/2021/10/is-it-ableism-part-2-obvious.html" target="_blank"><span style="font-family: arial; font-size: medium;">Part 2: Obvious Definitions of Ableism</span></a></i></p><p><span style="font-family: arial; font-size: medium;"><i><a href="https://eccentricsunited.blogspot.com/2021/10/is-it-ableism-part-3-defining-disability.html" target="_blank">Part 3: Defining Disability</a></i></span></p><p><span style="font-family: arial; font-size: medium;"><i><a href="https://eccentricsunited.blogspot.com/2021/10/is-it-ableism-part-4-internalized.html" target="_blank">Part 4: Internalized Ableism</a></i></span></p><p><span style="font-family: arial; font-size: medium;"><i><a href="https://eccentricsunited.blogspot.com/2021/10/is-it-ableism-part-5-is-overcoming.html" target="_blank">Part 5: Is "Overcoming" Worth It?</a></i></span></p><p><span style="font-family: arial; font-size: medium;"><br /></span></p><p><span style="font-family: arial; font-size: medium;"><span><a href="https://youtu.be/Q3UNdbxk3xs" target="_blank">In a seminar from the 1980s</a><span>, special educator Richard Lavoie</span></span><span> </span><a href="https://youtu.be/Q3UNdbxk3xs?t=3349" target="_blank">discusses the concept of fairness</a><span> and what accommodation means in the context of education, something barely understood until pretty recently. In a clip that has stuck in my mind ever since I first saw this video in the late 1990s, Lavoie says:</span></span></p><p><span style="font-family: arial; font-size: medium;"></span></p><blockquote><span style="font-family: arial; font-size: medium;">As I speak to parents and teachers all over this country, I see classrooms and families being run... based on a child's concept of fairness... Fairness does not mean that everyone gets the same. Fairness actually means that everyone gets what he or she* needs...</span></blockquote><blockquote><p><span style="font-family: arial; font-size: medium;">...I'll say to a teacher, "Jody's gonna be in your class next semester, Teacher. She's a wonderful kid, very bright kid; she's gonna do very well in your math class. But she's got a learning disability. It's called a far-point copying problem, and she can't copy off the blackboard. So here's what I'd like you to do: when you put problems on the blackboard for everyone to copy, I'd like you to write up an extra set for Jody, and give that to Jody..." Invariably, the teacher will say, "I can't do that." And I say, "Why not?" There's a lot of answers I'll accept. I'll accept "Because I don't know how," I'll accept "Because I don't have time," I'll accept "Because I don't believe in mainstreaming," I'll accept "Because I don't like Jody." I'll go to the mat with a teacher and I will discuss any one of those answers with a teacher. The one answer I will not discuss, the one answer that I think is beneath contempt and beneath discussing is the answer I hear most often, and that is, "I can't do that for Jody..." Why? </span></p></blockquote><p><span style="font-family: arial; font-size: medium;">In unison, a few of the participants state the answer that Lavoie was looking for: "It's not fair to the others." Lavoie comments, "It's got nothing to do with the others. Jody needs it; the others don't. It has <i>nothing</i> to do with the others." To illustrate the absurdity of this logic, he provides a hypothetical example in which one of his seminar participants, Carolyn, goes into cardiac arrest. Although he knows CPR and can save her life, he refuses to help Carolyn, saying, "Hey, Carolyn, I'd like to help you; I really would. But, heck, we've got thirty people here. I don't have time to give CPR to everybody, and it wouldn't be fair to only give it to you."**</span></p><p><span style="font-family: arial; font-size: medium;">Lavoie wraps up the section by saying, "We're not going to be able to work successfully... with a learning-disabled child in a mainstream classroom until teachers and parents begin to understand that in order to be fair, we've got to treat them differently."</span></p><p><span style="font-family: arial; font-size: medium;">I feel that this more-enlightened concept of fairness is now far better understood-- at least in the context of a kid with an academic learning disability. We still have a long way to go when it comes to applying it with autistic people, and when I was a kid "a long way to go" wasn't even a qualifier: in the 1980s and 1990s, a more ignorant time before the term "autism spectrum" was part of mainstream discourse, we weren't even "on the way". </span></p><p><span style="font-family: arial; font-size: medium;">As I discussed in previous installments of this series, my parents, as well as many teachers, camp counselors, and employers regularly treated me with the absurd concept of fairness that Lavoie describes. Phrases that I heard over and over included, "You can't expect people to understand [X] about you, and you need to learn... bla bla bla." Intentional or not, the implication is, "You don't see everyone else expecting the kinds of accommodations you do, and it's not fair for you to expect 'special' treatment." The things that I needed people to understand and accommodate were my chronic anxiety, my meltdowns and my need for direct communication. </span></p><p><span style="font-family: arial; font-size: medium;">My need for direct communication has always been the most important and, especially when I was a kid, it has played a critical role in curbing my anxiety and preventing meltdowns. Like many of us on the spectrum, I don't do "hints." I can't. It's not that I don't know when somebody might be dropping a hint, but the ambiguity of this communication is very disconcerting to me. I started to be able to detect possible "hints" in my teenage years. What was really frustrating was that if I went to my parents about hints I thought I might be getting, they told me I was reading too deeply into things. On the other hand, if I decided to put aside my fears and go with the assumption that something wasn't a hint, I often ended up getting in trouble and then told, "You need to learn to take hints." Sometimes hints were being dropped, sometimes they weren't. This frustration with ambiguous communication has followed me well into adulthood.</span></p><p><span style="font-family: arial; font-size: medium;">Because I have been hurt deeply by so many people (<a href="https://eccentricsunited.blogspot.com/2014/11/an-open-letter-to-ex-friend.html" target="_blank">including my ex-best friend of fifteen years</a>), I don't have the emotional energy to deal with the possibility that somebody might be "dropping hints" or otherwise not telling me something and expecting me to read their mind. When I find myself starting to become friends with somebody, I make it very clear that I expect them to be direct when talking to me or it's not going to work. Oh, what's that you say? Many people are uncomfortable being direct? Well, tough shit. Think how uncomfortable it is for me having to guess all the time. I can't be the only one making accommodations. If I am doing something that is bothering somebody, the only way I will stop and adjust my behavior is if the person tells me directly. I also need people to be direct with me when it comes to remote communication (texting, etc.) or I at least need them to explain what their habits are in how they handle remote communication. I recently had a discussion about this sort of thing with <a href="https://eccentricsunited.blogspot.com/2020/08/lemons-and-lemonade-or-silver-lining.html" target="_blank">someone I reconnected with at the beginning of the pandemic.</a></span></p><p><span style="font-family: arial; font-size: medium;">About a year and a half ago, completely on a whim, I messaged Chuck, a counselor from my 1997 group trip to Israel. We had been on Facebook together for years but never really communicated. We talked for a little bit, and then I asked him if he wanted to video chat. I honestly didn't expect that we would be talking for more than ten minutes when we finally connected about a week later, but I just thought it might be interesting to talk to him after all these years. To my surprise, we hit it off right away, and ended up talking for an hour and a half. Chuck and I have since had ten more video calls. </span></p><p><span style="font-family: arial; font-size: medium;">In our calls, sure, we talk about the funny things that happened during the summer that we were in Israel together. A couple times, we also laughed about how back then I had a huge crush on him and chased him around like I was Pepe LePew and was a real pain in the ass to him (my words, not his). But most often, we talk about current events, politics, religion, and science (we're both very interested in brain science). I briefly met his wife on one of the video calls, and she seems pretty cool. Chuck and his family live nearby and we're going to get together sometime after his eleven-year-old daughter is able to get vaccinated. </span></p><p><span style="font-family: arial; font-size: medium;">There was, however, something that bothered me a little: Lately, when I've sent out invites for our video chats, I have had to follow up once or twice before Chuck responds "yes" or "no". I have been taught repeatedly, often learning the hard way, that this is the kind of hint I need to watch out for in which the other person is losing interest (and sadly, <a href="https://eccentricsunited.blogspot.com/2018/10/a-final-act-of-catharsis.html" target="_blank">I've also been taught many times that I'm the kind of person people lose interest in</a>). I found this confusing because Chuck has always been very direct. This was true in 1997, and it's true now. So in our last video call I asked Chuck straight out if he was trying to tell me something. I said if he was he needed to tell me directly. I told him, "I feel like a little kid who is asking her cool older cousin, 'Will you play a game with me? Please? <i>Please?</i>' until he finally throws up his hands and says, 'Fine! You win!'" and that it's ultimately the other person throwing the kid a bone, not playing a game with her because he actually wants to. I told Chuck that it made me feel like I was being invasive, pushy, and so forth, and I didn't want to do that. I told him that I understand that things come up, people get busy, etc., but what I really didn't understand was why taking thirty seconds to say "yes" or "no" was so difficult unless he was trying to drop a hint. </span></p><p><span style="font-size: medium;"><span style="font-family: arial;">Chuck assured me that he wasn't trying to drop hints, and that if he didn't want to talk to me anymore he'd tell me straight out. He explained that he is simply bad at following up with people, and even reaching out to them, and that lately he has been especially busy. He also said that he would try to be more respectful of my need for a concrete answer and would try to get better at giving me one, though he couldn't promise anything; he finds that when things are too busy, he's not even thinking about giving someone a simple "yes" or "no". </span><span style="font-family: arial;">Chuck even told me that if he doesn't respond to an invite that it's fine if I keep following up until he does, saying that he doesn't find it pushy. He said, "Look, you and I go back a long way. We have a history. We didn't start out as friends, but now we've become friends." I smiled and said, "I was a pain in your ass." We laughed about that. Chuck also said, "I love talking to you. I get a lot out of our talks, and I feel like I've learned a lot from you." He then surprised me by saying, "I've actually been giving you more of my time than most of my friends, but I'm not 'throwing you a bone.' It's out of empathy. I know that these chats are important to you and I also realize that we're in the middle of a pandemic and you live alone." I certainly don't expect him to give me more of his time than most of his other friends, but I appreciate him for caring enough to do so.</span></span></p><p><span style="font-family: arial; font-size: medium;">This is an example of what accommodation looks like. Chuck seems to understand how I operate and knows that I need people to be direct with me. While he admitted that he might not get better at following up to my invites, he responded to my concerns in very direct and concrete terms. He told me how he viewed our friendship and what the boundaries were. I admitted that I had been worried that Chuck was treating me differently than his other friends-- not in the understanding and accommodating way that I just described, but in the infantilizing, patronizing, alienating way that many people in my life have felt that they had to over the years. <a href="https://eccentricsunited.blogspot.com/2018/10/a-final-act-of-catharsis.html" target="_blank">What feeds this fear in me is that it's been drilled into my head that certain people-- older and married, specifically-- are off-limits to me, that they're in this exclusive club and that any interaction I have with them will be invasive by definition.</a> This, of course, is a chronic insecurity that I am trying very hard to undo. </span></p><p><span style="font-family: arial; font-size: medium;">I have just provided an example of what treating someone differently through accommodation and understanding looks like. But what about treating someone differently through infantilization? It's a very fine line and will be the subject of the <a href="https://eccentricsunited.blogspot.com/2021/11/is-it-ableism-part-7-infantilization.html" target="_blank">next post in this series.</a></span></p><p><i><span style="font-family: arial; font-size: medium;"><br /></span></i></p><p><span style="font-family: arial; font-size: medium;"><i>*Yes, I realize that this language isn't inclusive to non-binary people. Remember that this video was made in the 1980s.</i><span> </span></span></p><p><i><span style="font-family: arial; font-size: medium;"><span>**I actually think there's a better example that illustrates the absurdity of the concept of fairness that teachers and parents were operating under back then: In my discussion in </span><a href="https://eccentricsunited.blogspot.com/2021/10/is-it-ableism-part-3-defining-disability.html" target="_blank">Part 3</a><span> about the ubiquity and eventuality of some level of visual impairment for nearly everybody, I talked about how this "disability" was readily accommodated with glasses. Imagine a teacher telling a near-sighted student, "You can't wear glasses in class. It's not fair for you to wear them when nobody else is."</span></span></i></p><p><span style="font-family: arial; font-size: medium;"> </span></p><blockquote><span style="font-family: arial; font-size: medium;"> </span></blockquote><p></p>Unknownnoreply@blogger.com0tag:blogger.com,1999:blog-1773356771647520694.post-59734139467189237312021-10-28T00:13:00.003-04:002021-10-30T00:13:12.626-04:00Is It Ableism? Part 5: Is "Overcoming" Worth It?<span style="font-family: arial; font-size: medium;"><i>Links to previous installments of this series:</i></span><div><span style="font-size: medium;"><br /></span></div><div><span style="font-family: arial; font-size: medium;"><i><a href="https://eccentricsunited.blogspot.com/2021/10/is-it-ableism-part-1-revisiting-dark.html" target="_blank">Part 1: Revisiting the Dark Ages</a></i></span></div><div><span style="font-family: arial; font-size: medium;"><i><a href="https://eccentricsunited.blogspot.com/2021/10/is-it-ableism-part-2-obvious.html" target="_blank">Part 2: Obvious Definitions of Ableism</a></i></span></div><div><span style="font-family: arial; font-size: medium;"><a href="https://eccentricsunited.blogspot.com/2021/10/is-it-ableism-part-3-defining-disability.html" target="_blank"><i>Part 3: Defining Disability</i></a> </span></div><div><span style="font-family: arial; font-size: medium;"><i><a href="https://eccentricsunited.blogspot.com/2021/10/is-it-ableism-part-4-internalized.html" target="_blank">Part 4: Internalized Ableism</a></i></span></div><div><span style="font-family: arial; font-size: medium;"><br /></span></div><div><span style="font-family: arial; font-size: medium;">In <a href="https://eccentricsunited.blogspot.com/2021/10/is-it-ableism-part-1-revisiting-dark.html" target="_blank">Part 1</a> of this series, I talked about being annoyed that my dad praised me for "overcoming" autism, that it felt like a backhand compliment. In <a href="https://eccentricsunited.blogspot.com/2021/10/is-it-ableism-part-4-internalized.html" target="_blank">Part 4</a>, I discussed having to spend many years working rigorously to rein in things like meltdowns and inappropriate jokes. In the eyes of my dad-- and likely many others-- this is something I should be proud of, and I'm not sure how to respond to that.</span></div><div><span style="font-family: arial; font-size: medium;"><br /></span></div><div><span style="font-family: arial; font-size: medium;">Don't get me wrong-- I'm glad that these days I get along better with people and that my meltdowns are few and far between. But, as I've said, to reach this point I had to work rigorously (and in the case of the meltdowns, also take heavy doses of SSRIs). So many times when I failed to do what was expected of me, people often responded with extreme and judgmental reactions. The message I got in the aftermath was always the same: that I should accept even the most extreme reactions as reasonable and that I didn't try hard enough. Often, my parents would reprimand me for being "immature" and "inappropriate", saying, "You have to learn how to behave appropriately." On more than one occasion, Dad said, "This reflects on us as parents." </span></div><div><span style="font-family: arial; font-size: medium;"><br /></span></div><div><span style="font-family: arial; font-size: medium;">Well, shit. After a while, of course your behavior is going to change, at least somewhat. And why not? I think one can browbeat a kid into doing just about anything*. It makes me think of left-handed people who eventually learned to write with their right hand, not because they did so on their own, but because superstitious teachers and parents forced them to.</span></div><div><span style="font-family: arial; font-size: medium;"><br /></span></div><div><span style="font-family: arial; font-size: medium;">And that's the problem. Just as left-handedness was once seen as "abnormal" at best and "Satanic" at worst, up until very, very recently, attitudes and behaviors of autistic people like me were seen as superficial attributes. Sometimes, they were read as symptoms of "bad parenting". Rarely did people speculate that these were signs of a brain that was hardwired differently. </span></div><div><span style="font-family: arial; font-size: medium;"><br /></span></div><div><span style="font-family: arial; font-size: medium;">Right now, I can hear people asking, "Oh, well if you're interacting better with people today, isn't it worth it?" No. The end doesn't justify the means. Although I don't have PTSD, my therapist says I have a couple of signs of it. One of these signs is the occasional nightmare. Often, this is in the form of a vivid dream in which I am a teenager and in a screaming fight with my parents. The are two versions of this dream: 1) That I am fighting with my mother who is telling me I don't act and dress feminine enough and 2) We are at a gathering somewhere, and my parents are reprimanding me about something unforgivably inappropriate that I did. I am screaming and crying desperately, trying to explain things to them and they won't listen. Both dreams are so intense that sometimes I even wake up screaming.</span></div><div><span style="font-family: arial; font-size: medium;"><br /></span></div><div><span style="font-family: arial; font-size: medium;">Another horrible dream I have involves close friends excluding me-- sometimes deliberately and sometimes because they don't seem to notice me. The latter scenario-- the feeling of invisibility, that nobody would notice if I dropped off the face of the Earth-- is something that followed me throughout my childhood, teenage years, and occasionally in adulthood. I actually had this dream a couple nights ago. In the dream, I was celebrating my birthday with a bunch of people at some weird indoor water park/escape room. In one of the challenges, we had to pair up. There was an odd number of people, and I was the only one who did not have a partner. Nobody even seemed to notice that I was left out. I said something like, "Great, now I can't even have a birthday without something like this happening to me." Angry that nobody even thought of me at my own party, I turned to my guests and shouted, "Fuck all of you and the horse you rode in on!"** before storming out of the building. </span></div><div><span style="font-family: arial; font-size: medium;"><br /></span></div><div><span style="font-family: arial; font-size: medium;">So the short answer is, no, it's not worth it. It would've been better if I'd been met with more understanding and patience growing up, as I would if I were a 21st century kid instead of a 1980s and 1990s kid. I would've received guidance but not been under constant pressure to "change". Neurotypicals and autistic people communicate very differently, and they need to meet each other halfway. The onus can't be entirely on the autistic person. It causes anxiety, stress and, for many people, PTSD (or in my case, symptoms of it). For neurotypicals to do their part, they should be expected to make some accommodations, just as able-bodied business owners should be expected to provide wheelchair ramps for wheelchair users.***</span></div><div><span style="font-family: arial; font-size: medium;"><br /></span></div><div><span style="font-family: arial; font-size: medium;">What does accommodation look like? <a href="https://eccentricsunited.blogspot.com/2021/10/is-it-ableism-part-6-accommodation.html" target="_blank">Stay tuned.</a></span></div><div><br /></div><div><span style="font-family: arial; font-size: medium;"><br /></span></div><div><span style="font-family: arial; font-size: medium;"><i>*Then again, it depends on the disability, the extent of which is just an accident of nature, isn't it?</i></span></div><div><span style="font-family: arial; font-size: medium;"><i>**I realize that this phrase makes no sense in the context of my dream. But dreams often aren't logical.</i></span></div><div><span style="font-family: arial; font-size: medium;">***<i>Truthfully, not enough businesses have this accommodation. At least, though, government-funded spaces such as schools and libraries in the United States are legally required to provide this.</i></span></div>Unknownnoreply@blogger.com0tag:blogger.com,1999:blog-1773356771647520694.post-85860591218093055022021-10-23T22:56:00.006-04:002021-10-28T15:53:30.060-04:00Is It Ableism? Part 4: Internalized Ableism<p><span style="font-family: arial; font-size: medium;"><i>If you've just joined me, don't forget the read the first three posts in my </i>Is It Ableism?<i> series:</i></span></p><p><span style="font-family: arial; font-size: medium;"><a href="https://eccentricsunited.blogspot.com/2021/10/is-it-ableism-part-1-revisiting-dark.html" target="_blank"><i>Part 1: Revisiting the Dark Ages</i></a></span></p><p><span style="font-family: arial; font-size: medium;"><a href="https://eccentricsunited.blogspot.com/2021/10/is-it-ableism-part-2-obvious.html" target="_blank"><i>Part 2: Obvious Definitions of Ableism</i></a></span></p><p><span style="font-family: arial; font-size: medium;"><a href="https://eccentricsunited.blogspot.com/2021/10/is-it-ableism-part-3-defining-disability.html" target="_blank"><i>Part 3: Defining Disability</i></a></span></p><p><span style="font-family: arial; font-size: medium;">In Part 3 of my <i>Is It Ableism? </i>series, I ended by saying I wouldn't want to be "cured" of autism because it makes me who I am. Prosopagnosia is a different story; it isn't something that I feel makes me who I am, but just something that gets in the way. I also said that I could imagine people accusing me of internalized ableism for making this statement. Again, we need to make sure we have a discussion about this issue rather than being so quick to jump to conclusions. </span></p><p><span style="font-family: arial; font-size: medium;">So what is internalized ableism? Let's ask Wikipedia. Internalized ableism is a form of internalized oppression, which occurs when "one group perceives an inequality of value relative to another group, and desires to be like the more highly-valued group." Obviously, this can occur at the individual level too. I reject the idea that my desire to not have prosopagnosia is a form of internalized ableism. Even though people generally are understanding when I tell them it will take me a while to learn their faces, I would prefer that this wasn't the case, that it didn't take so much effort. But that doesn't mean I think that people without prosopagnosia are "better" than me. If I did, then, yes, that would be a form of internalized ableism. That doesn't mean I haven't suffered from internalized ableism in other circumstances. In fact, I think I have, in the form of a book I wrote several years ago.</span></p><p><span style="font-family: arial; font-size: medium;">In the summer of 2010, I began writing a book for parents of kids with Asperger's Syndrome*. I began seeking an agent for the book in 2013, but it fell to the wayside as I had just been fired from a job in Maine, where I moved to after leaving Brooklyn. I had to move back in with my parents in Pennsylvania, continuing the never-ending saga of trying to find and keep a job. When I finally got on my feet again in Boston, I decided not to pursue publication: Many of the ideas that I expressed in the book, such as that we need to stop trying to "fix" kids with Asperger's Syndrome, were novel at the time that I wrote the book but are now at long last a growing part of mainstream discourse. Much of what I said has been expressed by lots of autistic people in books, blogs, and on YouTube. My book is outdated, and I am now prioritizing writing fiction. Any of my personal thoughts about autism go into this blog, of course, and possibly in some "officially" published articles in the future.</span></p><p><span style="font-family: arial; font-size: medium;">I still stand by most of what I expressed in my book, but there are other things I now realize are cringeworthy. In the opening chapter, I proudly declared that I probably would not meet the diagnostic criteria for autism if I were tested as an adult. This statement was shortsighted, ignorant, and, yes, arguably reflective of internalized ableism. I made this statement based on something that I once read about how some autistic people, upon reaching adulthood, present in ways that are subclinical. </span></p><p><span style="font-family: arial; font-size: medium;">I realize now that part of the reason that some people don't seem to meet the diagnostic criteria in adulthood is because there are still many psychologists who have a narrow-minded view of what autism looks like, especially in women. I've heard too many women complain that they were not diagnosed because they fail to meet certain stereotypes. They are told things like, "You're too creative to be autistic" or "You're too outgoing to be autistic." In my mind, that would be just as ignorant as telling someone, "You can't have Tourette Syndrome because you never swear**."</span></p><p><span style="font-family: arial; font-size: medium;">Another reason is that lots of autistic people-- again, mostly women-- have learned to "mask"-- suppress their natural autistic tendencies in the name of being accepted and, more importantly, to avoid interpersonal trauma. But guess what? Many of these people suffer trauma anyway, often in the form of PTSD as a result of decades of exhaustive masking. </span></p><p><span style="font-family: arial; font-size: medium;">Maybe my autism is less obvious now than it was twenty-ish years ago, but that isn't something I should boast about. I realize that part of it has to do with what autistic people stereotypically look like and another part has to do with the fact that I had to work hard to get to where I am now in terms of social skills. I don't know how much of this has to do with masking-- which I was never good at anyway-- and how much of it has to do with natural neurobiological changes. The latter I deserve no credit for because people are made the way they are made. I had a hard time making eye contact with unfamiliar adults when I was a kid, but that changed around adolescence. For me, it was a stage that I simply outgrew***. My guess was that there was simply a natural, neurobiological change that occurred. </span></p><p><span style="font-family: arial; font-size: medium;">On the other hand, there are other things that I had to work rigorously to curb, such as my tendency to to make inappropriate jokes. I still make them, but these days I am better at choosing my audience for them. I was one of those autistic kids who had no "filter", and I had to work hard to "install" it. Same with my tendency for meltdowns. The meltdowns are largely under control due to the intervention of SSRIs and rigorous self-training; when they do happen, it's generally only when I'm alone or around my family, where I am more likely let my guard down (that, and the fact that since they've known me for so long they often accidentally reopen old wounds, as illustrated in the first post in the series). </span></p><p><span style="font-family: arial; font-size: medium;">So what does this have to do with internalized ableism? It has everything to do with it! Over the years-- and even still today-- if I occasionally don't rein myself in with a joke or a meltdown, I get unbelievably angry at myself, holding myself to neurotypical standards. I feel not that I made a mistake, but that I have done something horrible, that I have <i>failed</i> in some egregious, unforgivable way, and that any harsh backlash I get from other people for it is well-deserved rather than the result of lack of understanding on their part. Just to illustrate how ludicrous this is, let me give you an analogy with a physical disability: A wheelchair user tries to walk up the stairs into a building but keeps falling down. Instead of accepting that she needs a wheelchair, she tells herself, "What's wrong with you? Everyone else can get into the building, so why can't you?" Perhaps she has said this to herself after decades of hearing things like, "You need to learn to walk," "Do you see other people your age stumbling on the stairs?", "You're not trying", and "You refuse to learn to walk!"</span></p><p><span style="font-family: arial; font-size: medium;">As my therapist has repeatedly told me, I have been well-trained. Growing up and well into my twenties, my well-meaning but ignorant (again, in the "I don't understand astrophysics" way, not the Donald Trump way) parents repeatedly said similar things as in my wheelchair user example, such as, "You're not trying," "You need to learn to...", "You refuse to learn...", "You need to change," and so forth. After learning about the autism spectrum in 2002 and finally having a logical explanation for, well, everything in my life, I still managed to internalize the feedback and input and got from my parents and others. For many years I saw my autism as something to overcome rather than something to accept and expect understanding and accommodation for. As illustrated in the first blog post, my dad still has the mentality that autism is something to "overcome."</span></p><p><span style="font-family: arial; font-size: medium;">But even with "overcoming" vs. "acceptance", there is a lot of gray area, just like everything else I've written about so far in this series. <a href="https://eccentricsunited.blogspot.com/2021/10/is-it-ableism-part-5-is-overcoming.html">Stay tuned</a><a href="http://">.</a></span></p><p><span style="font-family: arial; font-size: medium;"><br /></span></p><p><i style="font-family: arial;"><span style="font-size: medium;">*This was the term I used for myself back then. These days I waffle between "Asperger's Syndrome" and autism and feel ambivalent towards both terms. But that's another contentious discussion for another day.</span></i></p><p><span style="font-family: arial; font-size: medium;"><i>**This particular manifestation is called coprolalia, and it occurs only in a small minority of people with Tourette Syndrome. Unfortunately, it is the most prevailing stereotype that people associate with the condition.</i></span></p><p><i style="font-family: arial;"><span style="font-size: medium;">***To be clear, I use the term "outgrew" because my transition into making eye contact happened naturally, not because other people forced me to or because I forced myself to. I realize that for many people eye contact will be difficult or impossible for them for their entire lives, and nobody should force them to do it.</span></i></p>Unknownnoreply@blogger.com0tag:blogger.com,1999:blog-1773356771647520694.post-67854961282656346262021-10-15T22:28:00.008-04:002021-11-15T14:19:12.201-05:00Is It Ableism? Part 3: Defining Disability<p><span style="font-size: medium;"><span style="font-family: arial;">If you've missed the previous installments of this series, check out <a href="https://eccentricsunited.blogspot.com/2021/10/is-it-ableism-part-1-revisiting-dark.html" target="_blank">Part 1</a>, in which I introduce the concept of ableism; and <a href="https://eccentricsunited.blogspot.com/2021/10/is-it-ableism-part-2-obvious.html" target="_blank">Part 2</a>, in which I attempt to define ableism. In the latter, I discussed examples of ableism in my own life while admitting that part of labeling someone's behavior ableist is contingent upon that person knowing about the disability in question. Ableism isn't always easy to define, and defining disability is also complicated.</span></span></p><p><span style="font-size: medium;"><span style="font-family: arial;">According to our good friend Wikipedia, a disability is "any condition that makes it more difficult for a person to do certain activities or effectively interact with the world around them (socially or materially)." Historically, society has taken for granted what is now called <a href="https://en.wikipedia.org/wiki/Medical_model_of_disability" target="_blank">the medical model of disability</a>: the person has a problem that needs to be fixed. For example, with a person who cannot use stairs, the goal is to "fix" that person to make them physically able to use stairs. If such interventions don't work, then that person is seen as the problem, rather than unaccommodating social systems and structures. </span></span></p><p><span style="font-size: medium;"><span style="font-family: arial;">On the other hand, there is the </span><a href="https://en.wikipedia.org/wiki/Social_model_of_disability" style="font-family: arial;" target="_blank">social model of disability</a><span style="font-family: arial;">, in which the person is disabled just by virtue of the fact that society does not accommodate them. The conditions that the person has are instead referred to as "impairments" (which I think is strange because it sounds judgmental, which seems to contradict what the social model is trying to prove), and "disability" is what happens when society refuses to accommodate said person.</span></span></p><p><span style="font-size: medium;"><span style="font-family: arial;">So which definition of disability is better?</span></span></p><p><span style="font-family: arial; font-size: medium;">Unfortunately, the Internet is where nuance goes to die, and unless I immediately embrace only the social model of disability, I anticipate a huge backlash with accusations of ableism. Well, lay it on me. Like it or not, this is a nuanced issue and I'm not going to pretend it isn't. Both the medical and social models of disability have their merits and limitations. But what this comes back to for me is how difficult it is to define disability. So let's use an example that will elucidate the complexity of the issue:</span></p><p><span style="font-family: arial; font-size: medium;">Vision impairment. Nearly everybody needs glasses eventually. Some people need them full time from early childhood and others, like me, don't need their first pair until their 40s or later and even then only wear them part-time. If we lived in a world in which visual impairment wasn't so pervasive and inevitable, I think it would likely be seen as a disability. However, because it <i>is</i> pervasive and inevitable, accommodations-- known as glasses-- are readily available. It probably doesn't hurt that said accommodation easily fits into one's handbag or backpack. Vision impairment is only regarded as a disability when it is so severe that glasses don't readily help the person see clearly, the most extreme case being when the person is blind.</span></p><p><span style="font-family: arial; font-size: medium;">Well then, is blindness a disability by the medical definition or the social definition? I really don't know. Thankfully, there are more resources to aid blind people in navigating the world-- such as the availability of reading material in Braille or on audio, service dogs, and transportation services. It probably isn't enough, but if there were perfect accommodations available for blind people, would they suddenly no longer be disabled? I think we are burying our heads in the sand if we pretend that this is only a societal issue. Even without the dangers of modern society-- such as cars while crossing the streets-- a blind person is at a disadvantage in ways that are beyond the systemic. A blind person living in a traditional tribal society where predators that feed on humans run rampant, for example, might not survive long. </span></p><p><span style="font-family: arial; font-size: medium;">However, I want to make it clear that even if we embrace the medical definition of disability on any level, that doesn't mean society should see a disabled person as "lesser" or "broken", and we shouldn't impose a cure on them for their condition, if one ever develops. It is tempting to think that a person with a disability might want to be cured, but in the 21st century it is ignorant to make this assumption. Years ago, I spoke to a person online who was completely blind, and I asked him if he ever wished he was able to see. He said he didn't, and if there was a cure he wouldn't take it. Being blind is what is normal to him because it is his world, his reality, and what he has always known. </span></p><p><span style="font-family: arial; font-size: medium;">As for autism, how do we define it in terms of the medical definition vs. the social definition of "disability"? I really don't know. Looking back at my childhood, I would have been far less "disabled" if I had been met with more understanding and acceptance. Then again, I am what is often labeled as a "high-functioning" autistic, so maybe it is easier for me to make this statement. But that brings rise to another contentious issue-- functioning labels-- which many of us in the community see as problematic. I have mixed feelings on the issue. While I don't think functioning labels are irrelevant, they are not easy to define. Non-verbal autistic people are generally seen as "low-functioning" because they're unable to speak, but many of these people are also intelligent, as one might see when giving these people a computer to help them communicate. Intelligence is automatically seen as a "high-functioning" trait. Functioning labels, overall, are another complex issue and beyond the scope of this series of blog posts. Maybe I'll come back to it eventually.</span></p><p><span style="font-family: arial; font-size: medium;">I will say this though-- I do have several neurodevelopmental disabilities: I am autistic, I have non-verbal learning disability, auditory processing disorder, and prosopagnosia (and let's be real, NVLD, APD, and prosopagnosia have been strongly linked to autism). Would I want to be "cured" of autism? I don't think so. It comes with assets and limitations, but overall it makes me who I am. My propensity to hyperfocus can be equally a blessing or a curse, depending on what I'm hyperfocusing on. Getting hyperfocused on a project I'm working on? That's a good thing! It makes me productive! But what about the <a href="https://eccentricsunited.blogspot.com/2011/05/aspergers-crushes-when-brain-gets.html" target="_blank">obsessive crushes</a> (which are common among autistic people) I've experienced in the past? Well, when another person is on the receiving end of such an intense focus, no good can come of it. But aside from that, my ability to hyperfocus-- and be alone for copious amounts of time, for that matter-- are good things.</span></p><p><span style="font-family: arial; font-size: medium;">But what about my other developmental disabilities? If there were a cure for prosopagnosia, for example, I would take it in a heartbeat. There is nothing fun about prosopagnosia. While I don't think it makes me "less than", and while people are very understanding when I warn them I'll end up asking their names dozens of times before recognizing them on site, it's just a pain in the ass. I don't like having it. It's not something intrinsically tied in to my identity, and it just gets in the way. Just for saying that, I'm sure I'm going to (unfairly, I think) get a lot of accusations of internalized ableism. And just what is that? <a href="https://eccentricsunited.blogspot.com/2021/10/is-it-ableism-part-4-internalized.html" target="_blank">Well, stay tuned for next week's installment.</a></span></p>Unknownnoreply@blogger.com0tag:blogger.com,1999:blog-1773356771647520694.post-68233815051340237772021-10-06T23:55:00.005-04:002021-10-18T13:54:14.364-04:00Is It Ableism? Part 2: Obvious Definitions of Ableism<p><span style="font-family: arial; font-size: medium;">In <a href="https://eccentricsunited.blogspot.com/2021/10/is-it-ableism-part-1-revisiting-dark.html" target="_blank">last week's post</a>, I introduced the concept of ableism via a personal anecdote. Then, I acknowledged that it's not easily defined, and defining it requires a lot of nuance. According to Wikipedia, ableism is defined as "discrimination and social prejudice against people with disabilities and/or people who are perceived to be disabled." This is the definition at its simplest, but there's still a lot to unpack. So let's start with a very simple example that damn near everybody would agree is ableism:</span></p><p><span style="font-family: arial; font-size: medium;">In Nazi Germany and its eugenics program, people with physical and cognitive disabilities were deemed inferior and executed. However, it is pretty naïve to think that ableism is limited to such extreme and obvious examples. Just as society is becoming increasingly aware of racism being a structural issue-- as opposed to something simple and obvious like "He's a racist because he's a KKK member"-- it's important to realize that structural ableism is a problem. Often, structural ableism is the result of lack of awareness and understanding rather than intentional maliciousness. A simple example is not providing a ramp for a wheelchair user to enter a building. Or, in the case of an invisible disability, such as dyslexia, not giving a student extra help or some other accommodation. While not as insidious as Nazi eugenics, failing to make accommodations for disabled people is a genuine problem.</span></p><p><span style="font-family: arial; font-size: medium;">Structural ableism is difficult to address, but part of addressing the issue involves being aware of cultural ableism. Wikipedia defines cultural ableism as "</span><span style="font-family: arial; font-size: medium;">behavioural, cultural, attitudinal and social patterns that may discriminate against dignity of disability symptoms, deny, invisibilise, dismiss special needs or may make disability rights and accessibility unattainable." This is definitely a major issue for all forms of disabilities, and I would wager probably more so for invisible disabilities.</span></p><p><span style="font-size: medium;"><span style="font-family: arial;">When I was a kid in the 1980s and 1990s, the only invisible disabilities that were well understood-- to my knowledge, anyway-- were dyslexia and intellectual disability (people with the latter, of course, used to be slapped with the cringe-worthy label "retarded"). Special education classes and accommodations were increasingly available for people with these disabilities. But as for the invisible disabilities that have been a part of my life like autism, </span><a href="https://en.wikipedia.org/wiki/Prosopagnosia" style="font-family: arial;" target="_blank">prosopagnosia</a><span style="font-family: arial;">, and </span><a href="https://en.wikipedia.org/wiki/Auditory_processing_disorder" style="font-family: arial;" target="_blank">auditory processing disorder</a><span style="font-family: arial;">? Forget it. Sink or swim. Missed that social cue and made a faux pas? "You refuse to take advice and you refuse to learn from your mistakes. You're not trying." Can't differentiate between two teachers with similar mustaches? "You weren't paying attention." Didn't hear the directions because there was too much background noise? Tough shit. "These other kids all heard the directions, so why didn't you? I don't want to hear any excuses." When parents and teachers said things like this to me, they were denying and dismissing my disabilities. There was just one problem that prevents me from automatically slapping on the "ableist" judgment: practically nobody was aware of autism, prosopagnosia, and auditory processing disorder back then. Of the three, auditory processing disorder was the only condition that I was diagnosed with as a kid.</span></span></p><p><span style="font-family: arial; font-size: medium;">While the above scenarios are definitely ableist, I strongly believe that applying this label is contingent upon whether the person passing these judgments is aware of the existence of these invisible disabilities. A teacher today would most certainly be educated on them, and if they still displayed the same attitude, it would be appropriate to call their attitudes ableist. Teachers in the '80s and '90s? Ignorant perhaps (in a "I don't know anything about astrophysics" kind of way, not in a Donald Trump kind of way). And in some cases, assholes, because on what planet is it okay to tell a child that they aren't trying?</span></p><p><span style="font-size: medium;"><span style="font-family: arial;">I let my parents and teachers off the hook somewhat because the issue was largely that my disabilities were unknown and unidentified. As I noted, auditory processing disorder was the exception to this. I was diagnosed at age eight, and every year before school started, my mother told all my teachers that I needed to sit in front of the room so that I could more easily process the directions. Usually my teachers cooperated,</span><span style="font-family: arial;"> but practically every year there was a teacher who failed to let me do that; whether because they "just forgot" or because they dismissed it as "special treatment", who the hell knows? If it was the latter, that is definitely an ableist attitude. And invariably I would get in trouble with said teacher for "not listening," which possibly reflected an ableist attitude.</span></span></p><p><span style="font-family: arial; font-size: medium;">Now what about less obvious cases of ableism? Well, part of that involves acknowledging that even a disability isn't always easy to define. We'll unpack that next week. <a href="https://eccentricsunited.blogspot.com/2021/10/is-it-ableism-part-3-defining-disability.html" target="_blank">Stay tuned.</a></span></p><p><span style="font-family: arial; font-size: medium;"><br /></span></p>Unknownnoreply@blogger.com0tag:blogger.com,1999:blog-1773356771647520694.post-88502430351973872712021-10-02T23:06:00.014-04:002021-10-28T16:58:45.387-04:00Is It Ableism? Part 1: Revisiting the Dark Ages<p><i><span style="font-family: arial; font-size: medium;">As always, names of people and places changed.</span></i></p><p><span style="font-family: arial; font-size: medium;">When I was visiting my parents in July, my dad and I were in the car having a discussion and he, for reasons I still don't understand, brought up a completely unrelated incident from the summer of 1999.</span></p><p><span style="font-family: arial; font-size: medium;">"I remember as your mom and I were leaving after dropping you off at Camp Maple Hill for staff orientation, I happened to turn around and saw that everybody except you was looking at Benny [the camp director]," Dad said. "You were looking off in another direction, and I thought to myself, 'This isn't going to work out. In a couple weeks, Julie's going to call us to pick her up because she got fired.'"</span></p><p><span style="font-family: arial; font-size: medium;">And that's exactly what did happen. That my dad brought up this incident so cavalierly and completely out of context of the discussion topic upset me. It also upset me because he had brought it up three or four other times in the past eleven years. Each of those times I told Dad not to mention it because I found it upsetting, and yet he kept forgetting and approached it with the same casualness one would have when discussing the weather. </span></p><p><span style="font-family: arial; font-size: medium;">I don't remember the incident that Dad describes, and I feel it's unfair to assume I wasn't listening just because I was looking off in another direction. I got fired from Camp Maple Hill for reasons that were unrelated to what he witnessed that day in June of 1999. My termination had largely to do with the fact that, against my wishes, I had been placed with an older group of kids instead of the younger kids I had requested; these kids often took advantage of me and one time even snuck off during a camp outing to a water park. Additionally, other staff members misinterpreted my strange sense of humor and felt the need to report it to Benny, who often yelled and screamed at me for my missteps. According to Benny, an Australian staff member left early because I had managed to make her severely uncomfortable. I couldn't even imagine what she thought I was capable of doing to her that she felt the need to go all the way back to Australia. Even twenty-two years later, this is still something I feel horribly guilty about. Sometimes I find myself wishing I knew her last name so I could look her up on Facebook and apologize.</span></p><p><span style="font-family: arial; font-size: medium;">By the time Dad and I got home, I was feeling angry: angry at myself for messing up so badly at Camp Maple Hill-- which I had tried working at because the camp I went to as a camper, Camp Negev, wouldn't hire me as a counselor-- and angry at Dad for not respecting my repeated requests not to bring up the story about me looking away when Benny was talking during orientation.</span></p><p><span style="font-family: arial; font-size: medium;">I felt a familiar surge of adrenaline, threats of the fight-or-flight response beginning to brew. I said sarcastically, of Dad's thoughts to himself after dropping me off, "It's nice to know that you had so much faith in me."</span></p><p><span style="font-family: arial; font-size: medium;">Dad said, "Well, there were problems in the past."</span></p><p><span style="font-family: arial; font-size: medium;">The word "problems" proved to be a catalyst that blew open a mental vault of memories that I still remember with a raw intensity as if they happened last week instead of decades ago. The word is among many other words and phrases that I have come to think of as catalysts*. Others on this list include "immature", "annoying", "...deal with you", "...being difficult", "inappropriate", "...afraid of you", "aggressive", "What's wrong with you?", "You are/were the only one...", "Everybody except you...", "You need to learn...", "You refuse to learn..." and others. These words and phrases were some that I heard more times than I can count throughout my childhood, teenage years, and well into adulthood. </span></p><p><span style="font-family: arial; font-size: medium;">I went through life thinking of myself as someone who constantly caused problems, who constantly made things difficult for other people and committed unforgivable sins. I was criticized regularly by peers, teachers, camp counselors, employers, and my own parents. I was apparently someone who had to be dealt with, put up with, handled... you name it. I was, in short, <i>A</i> <i>Problem</i>. People who told me I needed to learn to understand other people's perspectives in the same breath said I couldn't expect them to understand mine. </span></p><p><span style="font-family: arial; font-size: medium;">In Girl Scouts when I was in 4th grade, if the other girls were making fun of me and I finally started screaming and crying in frustration, it was only expected that the Girl Scout leader would tell me that she was already upset because her grandfather was in the hospital and she didn't want to deal with any of my "nonsense." In middle school, if I missed some subtle social cue for the millionth time, I was supposed to understand that one friend after another would ditch me after having given me, according to them, "many chances." If on my 1997 trip to Israel, one of my counselors told another one, "Julie drives me crazy and I don't want to deal with her**," I was expected to reflect on how I, as a sixteen-year-old kid, had continually made things difficult for a twenty-seven-year-old woman. If at Camp Maple Hill, I made a smartass remark to other staff that for God-knows-what-reason other people took seriously and felt the need to report to Benny, it was my fault for not knowing how they would react. </span></p><p><span style="font-family: arial; font-size: medium;">It's been a long, arduous process to re-contextualize events in my past as events experienced by an autistic-- and ultimately well-meaning-- person, one with an undiagnosed disability surrounded by people who rarely tried to understand. I've had to work on re-contextualizing such events as, "Life was difficult for me," rather than, "I made people's lives difficult."</span></p><p><span style="font-family: arial; font-size: medium;">As memories like these rapidly cascaded through my head at Dad's statement, he then tried to assuage my visibly accumulating distress by saying, "But you've overcome it."</span></p><p><span style="font-family: arial; font-size: medium;">"And what if I hadn't?" I asked evenly, glaring at Dad.</span></p><p><span style="font-family: arial; font-size: medium;">"Then we would be dealing with it," Dad said.</span></p><p><span style="font-family: arial; font-size: medium;">And there it was, another indication of me as someone who had to be "dealt with." Dad's intended compliment was a backhanded one, one that left many things unsaid, such as how insufferable I had been in the past. While that wasn't necessarily his intention, that is what I heard.</span></p><p><span style="font-family: arial; font-size: medium;">Then, I quipped sarcastically, "Oh, okay, so I'm more like a neurotypical person then? Is that what you mean by 'overcoming it?'"</span></p><p><span style="font-family: arial; font-size: medium;">Dad denied this, and then in confusion asked me why this conversation was so upsetting. I stopped myself short of saying, "It's ableist," but that is what I was thinking. I didn't say it because I wasn't-- and am still not-- ready to invoke that broad stroke. Instead I said, "It's-- it's complicated." Because it is.</span></p><p><span style="font-family: arial; font-size: medium;">There are many people in autism groups on Facebook who are living with their parents, people who can't hold down a job because they can't mask well enough to pass as neurotypical, people who can't even have a telephone conversation because it's too stressful for them. I thought to myself, <i>Is the fact that I "overcame" so many of these issues a testament to my character or an accident of nature, combined with severe pressure from society, ultimately a survival mechanism to prevent me from being traumatized further? Does this make me "better" than those who aren't able to live independently? If I hadn't "overcome" the issues in question, would it mean I was a failure?</i> I didn't have an answer to these questions, and I still don't. The question of "is it ableism?" along with the question of whether I've also suffered from internalized ableism also hangs in the air, and I've been thinking about it for the past few months. </span></p><p><span style="font-family: arial; font-size: medium;">The fact is, ableism isn't always easy to define, but it's definitely real. It's also a term that is sometimes overused, so I'm trying to be careful. There is a lot to unpack, which is why it will take a series of blog posts instead of just one. <a href="https://eccentricsunited.blogspot.com/2021/10/is-it-ableism-part-2-obvious.html" target="_blank">Stay tuned.</a></span></p><p><i><span style="font-family: arial; font-size: medium;">*I am avoiding using the word "trigger" because it is a medical term for a phenomenon affecting those diagnosed with PTSD. I feel that it is often misused and overused and I don't want to fall into that trap. </span></i></p><p><i><span style="font-family: arial; font-size: medium;">**A friend on the trip overheard this exchange and told me about it a year later. </span></i></p>Unknownnoreply@blogger.com2tag:blogger.com,1999:blog-1773356771647520694.post-76332736438930574332021-08-15T19:01:00.002-04:002021-08-15T19:03:23.226-04:00Can We Stop Alienating Each Other?<span style="font-size: medium;">I would like to make a request to the autism community: can we stop alienating each other?<br /> <br />Lately, I have grown very disheartened by the interactions in autism groups on Facebook. Many of us on the autism spectrum, particularly those who came of age in the final years of the twentieth century or earlier, have a lot of emotional baggage. We have experiences rife with interpersonal trauma that generally stem from misunderstandings by peers, teachers, camp counselors, and even our own parents. We have experienced a lot of loss: being kicked out of places, losing lifelong friends, being backstabbed by people we trusted and, overall, being condemned by one person after another. Often, we did not know what other people thought we did wrong, and any attempts to explain our actions were greeted with the message that perception and impact, rather than intent, was what mattered. It really hurts to go through life constantly at the receiving end of this dynamic. It also hurts that the people who thought they were supporting us, such as our parents, ended up invalidating our experiences and feelings on a regular basis.<br /> <br />Why, then, are we in autism groups doing it to each other? For example, there is a lot of controversy about the role of the term “Asperger’s”, and rarely a week goes by without some protracted, heated thread popping up in one of Facebook’s many autism groups. The controversy is due to its namesake, Hans Asperger, being a Nazi and that “Asperger’s” is used to describe people at a particular, “high functioning” end of the autism spectrum. People who object to the use of this term see it as ableist and endorsing a Nazi eugenicist. Whether the use of the term “Asperger’s” is still appropriate is a discussion worth having (and let’s not forget that many conditions are named after horrible people), but unfortunately a civil discussion never happens. Instead, those who object accuse its proponents of bigotry and internalized ableism. If the person does not admit that the other person was correct in their mindreading, then they are accused of being cold, callous, and not caring about others’ feelings. Often, moderators in these groups end up turning off comments after these threads turn into flame wars.<br /> <br />Another recent discussion in an autism Facebook group involved the topic of ghosting, a phenomenon where someone abruptly and without explanation halts contact with you. I assumed, perhaps erroneously, that the conversation was about being at the receiving end of this behavior—since many of us on the spectrum have repeatedly been in that position— rather than being the one engaging in it. I commented that I thought ghosting was cowardly, relating a painful memory about having been ghosted by my former best friend of fifteen years. Someone else told me that my feelings betrayed that I was a “toxic person.” This person—and others who backed her up—said that thinking a ghoster owed a ghostee an explanation was akin to someone saying that their partner owed them sex when they didn’t want it. Others in the thread commented that their own communication skills are not good and that sometimes they feel that ghosting is the only option for them. Again, these are points worth discussing, but instead I—and others who shared my viewpoint— was bombarded with accusations of ableism, callousness, and triggering other people. That was when I left the conversation and, admittedly, out of morbid curiosity, continued to watch it unfold without commenting. Ultimately, the thread was closed for further comments after more people accused each other of ableism and triggering comments.<br /> <br />Why can’t we even have civil discussions about these issues without accusations of triggering other people, of “coming from a place of privilege” if we feel a certain way about something? Why is reminding others in the group to please speak in a civil manner considered “tone policing” and “oppression?” We know how frustrating and painful it is to have someone assume the worst and treat us with intolerance. Can we at least make an effort to be more understanding and forgiving or at least civil with one another?<br /> <br />There seems to be something very insidious that happens in these threads: as soon as one person accuses another of triggering behavior, ableism, invalidation, and so forth, any attempt for the other person to defend their position only serves as further evidence that the accuser was right in their perception. Intent, after all, is meaningless, and apparently only impact matters. The last thing anybody wants is to be accused of ableism or bigotry of any kind, and it seems that the only option to keep the peace is to kill further thought, let alone further discussion, and ultimately agree with the accuser.<br /> <br />All this type of interaction ultimately does is further marginalize people within an already marginalized group. I would have thought that with the histories of gross misunderstanding we on the autism spectrum get from neurotypicals that we would want to refrain from this sort of mindreading behavior with each other. But sadly, I see an already frustrated, hurting population eating its own.<br /> <br />Can we please, please just stop alienating each other?<br /><br /></span>Unknownnoreply@blogger.com0tag:blogger.com,1999:blog-1773356771647520694.post-46967879154229421272021-06-27T23:31:00.009-04:002021-06-27T23:57:28.959-04:00Frustration, Anxiety, and Tension Part 2: A Witch's Brew of All Three<p style="text-align: left;"><span style="font-size: medium;"><span style="font-family: arial;"><a href="http://eccentricsunited.blogspot.com/2021/06/frustration-anxiety-and-tension-part-1.html" target="_blank">In my previous post</a>, I discussed the way <a href="https://www.youtube.com/watch?v=Q3UNdbxk3xs" target="_blank">frustration, anxiety, and tension</a> can mount as you try hard to better yourself, only to be dismissively told that you're not trying. But what happens when these demons overwhelm you and you end up doing something stupid and get into even <i>more</i> trouble than before?</span></span></p><p style="text-align: left;"><span style="font-size: medium;"><span style="font-family: arial;">One particular incident happened to me at age eighteen, on a Saturday morning in 1998 during my senior year of high school. I was taking a figure drawing class at a local university, and during that time in my life, I was dealing with a lot and my anxiety was like a raw exposed nerve. </span></span></p><span style="font-family: arial; font-size: medium;">First, I had just finished what would’ve been my final summer at Camp Negev. I had been in the C.I.T. program that summer, <a href="http://eccentricsunited.blogspot.com/2014/05/the-summer-of-1998.html">and it was clear that I would not be hired as a counselor the following year</a>. Camp was the only place I’d ever felt comfortable, and it was being taken from me. This was coupled with knowing <a href="http://eccentricsunited.blogspot.com/2015/11/november-13-1998.html">I would not be allowed to go on the gap-year Israel program</a> affiliated with camp. Triple that with the stress of getting ready to apply to art school to study animation. It was becoming apparent from looking at the other students’ work that they were much better than me. Did I even have a chance of getting accepted to art school? That was quadrupled with the constant feeling that my parents didn’t understand me and didn’t support who I was. Even if not their intent, they often made me feel I had to change. </span><span style="font-family: arial; font-size: medium;"><br /></span><p><span style="font-family: arial; font-size: medium;"><span>What many people didn’t understand was that I was thinking about these issues constantly, as if a little bug were in my ear whispering harsh criticisms to me: “You can’t draw well enough.” “You’re a horrible person and nobody at camp wants you back.” “You can’t spend a year in Israel because there’s something wrong with you and you aren’t fit to be around normal people.” “You’re not feminine enough and you should have outgrown that tomboy stage years ago if you want anybody to accept you.” </span></span></p><p><span style="font-family: arial; font-size: medium;"><span><br /></span><span>To make matters worse, I noticed early on that the teacher of the figure drawing class did not seem to like me, often talking to me in a condescending manner. I don’t remember specifics, but I do recall that I was trying to convince myself it was just my imagination. After all, my own parents often commented that I "misinterpreted" and "read too deeply into things"-- even when I knew damn well what I was looking at. One day when I was in the bathroom, a girl from the class commented, “I don’t like the way the teacher talks to you.” At least there I felt validated, that this wasn't my imagination. I was also glad to know that somebody was on my side.</span></span></p><p><span style="font-family: arial; font-size: medium;"><span><br /></span><span>As time went on, it was becoming increasingly clear that the teacher not only didn't like me but genuinely <i>disliked</i> me. I watched in resentment as she got along well with the other kids and really seemed to like them. They also seemed to like her, often laughing together like old friends. Her loud, boisterous laugh got on my nerves, as if it were rubbing in my face how the others could get along with her and I couldn’t because there was something wrong with me. What indeed <i>was</i> wrong with me, I wondered, that made her feel that she didn't have to be nice to me? </span><span>Once, she even chastised me for arriving two minutes late for the 10:00 class. A week or two later, she assured another student who apologized for arriving at 10:07 that "seven minutes is no big deal."</span></span></p><p><span style="font-family: arial; font-size: medium;"><span><br /></span><span>At some point during the semester, something happened that made the teacher take me into the hallway in frustration. Unfortunately, I don’t remember what it was, but I am confident that if I found a record of the incident somewhere, it would come right back to me. We had a tense conversation that ended in some kind of truce, for lack of a better term. At some point during the discussion I mentioned that other teachers I’d had in other classes at the school liked me. </span></span></p><p><span style="font-family: arial; font-size: medium;"><span><br /></span><span>But the dynamic between us did not improve.</span></span></p><p><span style="font-family: arial; font-size: medium;"><span><br /></span><span>In the second-to-last week of class, I was particularly on edge, the raw exposed nerve particularly irritable from the accumulating tension over the past few months. The teacher did her signature laugh when talking to one of my classmates. For some reason, it was at that particular moment that I had reached my limit. I whispered, “Aw, </span><i>shut up</i><span>!” At least, I had <i>meant</i> to whisper it, but I accidentally said it loud enough for her to hear. </span></span></p><p><span style="font-family: arial; font-size: medium;"><span><br /></span><span>The teacher yelled, “<i>Excuse me?</i> Who did you just tell to shut up?” </span></span></p><p><span style="font-family: arial; font-size: medium;"><span><br /></span><span>The room fell silent, all eyes on the teacher and me.</span></span></p><p><span style="font-family: arial; font-size: medium;"><span> <br /></span><span>In a panic, I stammered, “Nobody. Myself.” The teacher grabbed me by the wrist like I was an unruly child and pulled me into the hallway. Eyes narrowed into slits, she leaned forward, inches from my face. She yelled at me about every imperfection I had: speaking out of turn, getting openly frustrated with my artwork, not always following directions (I guess she thought this was intentional). At one point, she said, "I have tried putting myself in your shoes. I realize that there is something wrong with you." She also said, “You are going to fuck yourself over if you think you can go through life acting like this. I have had it with you. You make me feel like <i>shit</i>! Oh, you know all those other teachers who you said liked you? I’ve talked to all of them and they said they didn't like you. I have been pulling every string that I can to make sure you don’t go to this school.” </span></span></p><p><span style="font-family: arial; font-size: medium;"><span><br /></span><span>Humiliated from having heard my own self-criticism come out of another person, I sheepishly said, “My teachers in high school like me.” Her response was an even more exaggerated version of her signature laugh, as if it were the most ridiculous thing she had ever heard-- how could <i>anybody</i> like me? Then she told me I could come back into the room and work but I wasn’t allowed to talk to her. She said if I had questions to ask the other students.</span></span></p><p><span style="font-family: arial; font-size: medium;"><span> <br /></span><span>Needless to say, I only went back to get my things. Then, I found a payphone and called my parents who, thankfully, had cell phones back then. They were at a restaurant with a friend. Just as their food arrived, they got my call and had to leave to pick me up. When I found out this information, I thought to myself, "God, my parents can't even have breakfast without me fucking things up. What is wrong with me?"</span></span></p><p><span style="font-family: arial; font-size: medium;"><span><br /></span><span>My parents arrived, and I waited outside with my mother while my father went in to talk to the teacher.</span></span></p><p><span style="font-family: arial; font-size: medium;"><span><br /></span><span>When Dad came back outside, he told Mom and me about the conversation he'd had with the teacher. He said that as soon as the teacher realized that the guy who came into the room was my father, she sent her students on break and vigorously shook his hand with both of hers, obviously knowing that she was in trouble. Then, when my dad called her out on saying that she was going to make sure I didn’t go to the school, she said, “Oh I just mean if she comes I’ll make sure she gets more psychological support.” Dad said, “I’m her father and I’ll be the one to decide what psychological support she needs, not you.”</span></span></p><p><span style="font-family: arial; font-size: medium;"><span><br /></span><span>In a desperate attempt to explain the situation to my parents, amid tears I said, "It's my OCD!", invoking my recent (and ultimately incorrect) self-diagnosis of obsessive-compulsive disorder to explain why I had the issues that I did. Dad shook his head and said, "No. This is just another case of you saying the first thing that pops into your head." On the car ride home, Mom told me that what I had done was inappropriate and that I needed "to learn to behave appropriately." It frustrated me that my parents seemed to think I was acting like this because I wanted to. <br /></span><span><br /></span></span></p><p><span style="font-family: arial; font-size: medium;"><span>Don't get me wrong-- my parents were pretty pissed off at the teacher, but at the time they failed to grasp the reality of situations like the above. I had tried so many times over the years to explain that outbursts like these were the </span><i>end result</i><span> of trying to contain myself and the unbelievable anxiety I felt, but they never seemed to get it. Aside from the autism spectrum being mostly unknown, concepts like "chronic anxiety" were not topics of mainstream discussion. "Anxiety" was understood to be a momentary discomfort, not something that engulfed your entire life. I didn't even use the word "anxiety" to explain myself; rather, I often invoked a rush of adrenaline and the fight-or-flight response associated with it. I only even knew what these things were because Dad once told me about something he had read about them in college.</span></span></p><p><span style="font-family: arial; font-size: medium;"><span><br /></span><span>Years later, I found some notes Dad had taken when he called the school the following Monday to talk to the director of the Saturday program. Apparently the other teachers hadn't wanted me in their classes either.</span></span></p><p><span style="font-family: arial; font-size: medium;"><span><br /></span><span>This incident happened almost twenty-three years ago, and this type of issue that I had is largely under control. But the memory still hurts sometimes. It hurts because this was not the case of a teacher who was mean to everybody else also being mean to me. And the message that I got from the incident was one that I continued to get well into my adult life: That I am just "too much". </span><span>I've been long expected to understand that I have had this kind of profound and negative effect on people that violates them in horrendous ways, and that their extreme reactions, while not ideal, are understandable under the circumstances. </span><span>In fact, despite how upset my parents were with the teacher, they actually urged me to go back for the final class-- which I had no intention of doing-- because in doing so I would convey the message that I wanted to be "mature". That carries the implication that my teacher's response, while wrong, was not egregious. And no, I did not go back.</span></span></p><p><span style="font-family: arial; font-size: medium;"><span><br /></span><span>It also hurts because when I discussed this incident in autism groups in Facebook and asked if anybody had similar stories, all the "similar" stories I got were ones involving them as elementary school kids missing directions or crying in class only to get indignant hell from a teacher. None of them were stories about them in high school getting in trouble, let alone for saying something stupid. I suppose it's possible that they're just not writing about them because they're too embarrassed. But I get the impression that many of them learned early on that if they just shut up they would stay out of trouble. I don't know if it means that I was exceptionally bad at masking, that it was actually a sign that I was mentally stronger, a combination of the two, or neither. </span></span></p><p><span style="font-family: arial; font-size: medium;"><span><br /></span><span>I realize that we as a society have come lightyears since the '90s and that if this had happened today, there is a good possibility that the teacher would have been fired on the spot. But unfortunately, I was a teenager in the '90s and I have this story in my knapsack. It still hurts, and it's still confusing. <br /></span><span><br /></span></span></p><p><span style="font-family: arial; font-size: medium;"><span>I still have the same self-doubts sometimes.</span><br /><br /></span></p><p></p><p></p><div 0.5em="" 0px="" break-word="" class="o9v6fnle cxmmr5t8 oygrvhab hcukyx3x c1et5uql ii04i59q" color:="" margin:="" overflow-wrap:="" pre-wrap="" white-space:=""></div><p></p>Unknownnoreply@blogger.com0