autisticbooknerd01

[autisticbooknerd01]

"Doing My Best"

I have an unhealthy relationship with the instruction, "Do your best."

This is one phrase that trips up my autistic literal thinking, because in my experience most neurotypical folks don't mean, "Do the best that you can do at every task ever, even if it means running yourself ragged and regularly hitting burnout." PSA to my fellow autistics: Most of the time, when people tell you to do your best, they mean, "Do the best you can with the capacity you have, while considering what tasks are more or less important than others."

That means the 5 point quiz I had in one class was less important than the midterm I had in another, and that if I can't handle studying for both I should focus on the midterm.

Unfortunately, back when I didn't know the subtext of "do your best," I would treat them with the same weight.

Perhaps that's on me, at least partially. But I wish more people said what they meant, even if it takes longer. Maybe that's not fair; I don't think we always think about how we communicate and how different communication norms might affect others' understanding.

I still have the instinct to do my best, no matter the cost. It sucks. In grad school, all I want is to feel okay about getting a "B," but I'm not sure I can yet.

[autisticbooknerd01]

When Needs Outweigh Support

I can pinpoint, with relative certainty, the tipping point where my support needs started to exceed the support I could reliably access.

As I write this, I have the instinct to check my privilege. My parents became experts in my brain and in my needs, mostly from scratch. As a unit, we got very good at building a support structure for me. Factor in that I am white, middle class, and can at least "pass" as cis/het (as problematic as "passing" is), and I understand that, as much as possible, I was set up for success.

But.

We didn't have the context that I was autistic, and when you don't know the full picture of what's going on, of how you're different, you can't know the full picture of what supports are healthy and helpful, let alone access them. The way our society supports (or does not support) disabled folks is, quite frankly, imperfect at best, but with some of the existing support structures and accommodations, things could have been better.

I saw someone on TikTok, explain that late diagnosis for them was like driving a broken down stick shift chevette. They managed to build the tools they needed to more-or-less survive in this world, and even achieve some success, but it took years longer than it should have to realize that most people around them were driving Teslas, and that with the right supports, they could have been driving one too. That rings true for me, although every autistic person is different; don't take my word as law for the autistic experience.

Back to the point (lol).

It was the summer before my junior year of high school where my support needs started to exceed the support I could access. It was my second year working at my summer job. The first year, my older brother was one of my coworkers (because, nepotism), but this year, it was just me and two other people. One of my coworkers was safe, but she didn't speak fluent "Me" the way my brother more-or-less could, so I couldn't ask for support and be certain that I would receive understanding. My first summer of work, with my brother, was anxiety inducing, but this summer was so much worse.

It escalated over the next year, with friend drama and school trips, but that was the start. By the time I had an overnight sport camp that summer, I was pleading with my dad (one of the assistant coaches) to please let me sleep in his trailer, but he said no.

I wouldn't be diagnosed for another five years, but it would get somewhat better after therapy, and medication.

Still, imagine how much more "successful" (in air quotes because what the hell even is success) if I had the support I needed.

So many people don't have that. We (the general, societal we) have done a poor job honoring the dignity and lives and cultures of people who do not fit a very narrow definition of "normal" and "acceptable."

Fuck that.

[autisticbooknerd01]

Yup, this.

Queer 👏 people 👏 are 👏 not 👏 all 👏 fucking 👏 activists 👏

Stop quizzing us on queer history and asking us questions we aren’t qualified to answer about the world and about politics and about our identities

Stop trying to back us into a corner so you can justify your discrimination on the basis that we don’t know what we’re talking about or can’t “defend” ourselves to you

Stop treating every queer person that stands up and says “I want to be treated like a person” as if they’re an activist

Cut that bullshit out

Marginalised people just want to exist and be happy

I don’t know everything, and that doesn’t make me undeserving of your respect or my human rights you fucker

I don’t even owe you the stuff I do know- I still am entitled to basic fucking respect

TLDR; Queer people shouldn’t have to be historians or scientists for you to not be a fucking dick

[autisticbooknerd01]

Representation

When we were younger, my brother and I would play a game where we would assign characters in shows we watched to our family members. He always got the "normal" and/or funny ones, from Jim Halpert (The Office) to Leonard Hofstadter (The Big Bang Theory) to Troy Barnes (Community). I was always the "weird" one, the butt of the joke. I was Dwight Schrute (The Office), Sheldon Cooper (The Big Bang Theory), or Abed Nadir (Community). I'm still rather proud to be Abed.

I think this is evidence that we were always somewhat aware of my autistic traits, although we didn't know they had a name. I was the consistently the weird one. I was consistently the autistic-coded one.

I want to talk specifically about Sheldon Cooper, and how his character affects me to this day.

To start: he is definitely autistic coded (not well, but still). The creators of the show claim he is not autistic, but I wonder whether that's related to how, if he was, the punchline of nearly every joke is, "Haha, look at how autistic he is." When it's not that, his so-called friends (most of whom are creeps as well, but they're comparatively "normal," so they aren't punished for it) are infantilizing him in the grossest way possible.

I watched The Big Bang Theory for the first time ten years ago, when I was a little too young for it, and I laughed at the jokes because the laugh track indicated that I was supposed to, and I think I was uncomfortable but I didn't watch it again for YEARS so my brain stored it into my memory as funny.

I rewatched the show after I was diagnosed. Or, I rewatched what I could handle, because this show made me really sad and angry on his behalf. One line Sheldon says is, "I'm not crazy, my mother had me tested," and what the fuck, writers???

There's one episode that stands out to me, though I can't remember the name at all. Penny and Leonard are fighting, and Sheldon, who gets anxious when people fight, ends up running away to the comic book store, his safe place where he can regulate, to soothe himself. Penny and Leonard, as usual, act like he's being unreasonable, though they are marginally better in this episode. I, watching this, wanted to scream at them, "Can't you see he's distressed?"

So many of these characters, Sheldon included, are distressed and overwhelmed in a world that so clearly demonizes the way our minds work. That's something I desperately relate to. I understand how, when his character is being a bigoted piece of shit, his friends need to call him out and explain what's going on, but my god, could they please acknowledge that this world is very distressing for Sheldon and try to take his needs seriously? Can't they try to find some middle ground?

I just...it makes me so, so mad.

Sheldon was not a good person. Like everyone, autistic people have the capacity to be good and bad. But I'm tired of people like me being depicted as two dimensional bigots with no personality and no acknowledgement of what we go through to get to the starting line each day. Sheldon, like all autistic characters, deserves so much better.

We all do.

(I will die for Quinni Gallagher-Jones and Abed Nadir, though. Genuinely.)

[autisticbooknerd01]

On Feeling Perceived, and Normal

I get a threat response when I feel perceived. When I am perceived, I need to put my mask on, lace it on tight (is that a thing you do with masks?). I need to approximate normal.

Many people like to say there is no normal, but I think there must at least be some sort of archetype of normality, because when you stray too far from it, they tear you apart.

When you stray too far, when you're overwhelmed with no respite, when succeeding at school means not brushing your teeth, they call you "Death Breath." They stop when, months later, you ask (beg) them to, but it's an exception.

When you stray too far, when you can't finish your lunch because the food feels so wrong in your mouth and you feel sick, your teacher threatens to eat out of the trash if you throw it away. She doesn't wonder if you need a new diet of the foods you will eat, if what's available needs to be modified.

When you stray too far, and you use your voice to stim instead of making yourself small, your classmate, who calls himself your friend, points and says, "You're doing it again." And then laughs when you blush, anxious and overwhelmed and embarrassed and perceived.

They call it fun and games. They call it healthy. But shouldn't I have a say in what is fun and what is games and what is healthy when it involves me? Maybe not; I've never had much say in any of their rules, even, especially, the ones that hurt. And when they ask how it could be better, and I explain that there is more way to have fun, play a game, be healthy, they scoff, because it doesn't approximate their normal.

Why did they ask me in the first place, then?

If I seem angry, it's because I am. They don't like that either. I don't think they like that I am capable of that feeling.

[autisticbooknerd01]

Communication

All of my behaviors, from my words to my stims to my meltdowns, communicate something.

For a long time, especially before I was diagnosed, I don't think most people knew that. I was, at least subconsciously, aware of it. At the very least, I knew people were not responding to me in the right way much of the time. I don't hold anyone's lack of understanding against them; they did not have the context we have now, so how could I expect them to respond as if they knew?

But all of my behaviors communicate something. My meltdowns communicate that I am overwhelmed or overloaded. My stims communicate a variety of emotions, ranging from anxiety to joy.

I wonder why the world trivializes certain forms of communication more than others. Meltdowns are labeled as "outbursts." The people who have them are labeled as "annoying," or "difficult," or, if they are adults, "childish." Is it just because these behaviors, these forms of communication, are the deviant ones? Maybe. Probably.

I believe the world would be a better place if we understood that most human behaviors (even the deviant ones) communicate something.

Maybe not, though. The world is a bit on fire.

[autisticbooknerd01]

Neurodivergent Friends

Growing up, I heard a lot of people say or imply that neurodivergent folks were worse friends. Since my diagnosis, I have not been able to reconcile that information with my experiences.

Neurotypical folks, of course, are capable of being good friends, including to neurodivergent people. Years ago, one of my oldest friends let me carry around her book for a day, no questions asked, because I forgot to bring mine to school and she knew books (any book) were a comfort to me.

But some of my most vibrant friendships have been with neurodivergent folks.

My neurodivergent friends are the ones who drop everything to come over and body double with me. The ones who sit with me and play a game while I play a totally different game as a form of parallel play. The ones who let me stim, who let me infodump, who know when I crave touch and when I hate it.

They're the ones who can better intuit what will be helpful, because my needs often resemble theirs. They know what expressions of love will make my heart sing.

Six weeks ago, I had a meltdown and lost the ability to speak for three days. It's frustrating when this happens. I know what purpose meltdowns serve, however frustrating and awful they are, but I have no clue why my ability to speak shuts off during the recovery periods. But this time has become one of my most cherished experiences.

My close friend, who has ADHD, pulled out her little yellow legal pad and told me to start writing notes to her as an alternative way to communicate. And she pretended we were detectives, because she knew it would make me laugh, and joy speeds the recovery time.

Finding my community has been one of the most priceless gifts of my diagnosis. I can be a little more ME around them. My voice has a relaxed quality around my neurodivergent friends that doesn't come out anywhere else. And my biggest recommendation to folks navigating a new diagnosis is to find your people.

It's worth it. But in the meantime, know you are not alone, and that you are wonderful.

[autisticbooknerd01]

To my fellow non-binary folks of all identities...you are safe here.

Please Reblog is Your Blog is Safe for Non-Binary People.

If my mutuals can’t rb this then we can’t be mutuals

[autisticbooknerd01]

To be neurodivergent is to be misunderstood, even when you go above and beyond to explain yourself.

I'm a chronic overexplainer. To the point where I'm sharing so much information it sounds like I'm making something up. It's conditioned in me from years of being misunderstood. I'm unlearning it, but it is so, so slow.

Imagine my shock as a neurodivergent teen when I first realized that using large vocabulary and eloquent speech doesn't make you less likely to be misinterpreted, rather it adds an entirely new layer of misinterpretation I had never even realized existed in the form of people thinking you're being snobbish or condescending when you're just trying to be specific

[autisticbooknerd01]

Reflection on Relationships

Friendship is hard for my autistic brain. Relationships of all types are hard. I don't know at what point someone becomes a friend, and I don't know how to filter based on whether someone is a friend. Thus, in situations with other humans, I'm often left with two options: silence or oversharing.

I recently learned that a friend of mine first reached out with the intention of flirting. This was years ago, and I never thought of this person as more than a friend (I certainly don't now), but it makes me sad. I wish I could be flirted with in a way where I knew I was being flirted with. I never do. And online dating is terrifying. Truly, any advice is welcome.

The best friendships I've had are with fellow neurodivergent folks. The ones I don't have to explain myself to. There's something refreshing about being taken seriously at face value. Of knowing that I am with a friend who doesn't need qualifiers for what I need.

Hopefully this isn't too depressing.

[autisticbooknerd01]

Joy

I think there's something revolutionary about autistic joy.

I think queer joy is revolutionary too.

When I first started seeing queer stories in mainstream media, they were coming out stories. Stories that focused on how hard it was to live as a queer person in the world, and how the only way to move forward is to come out. Stories about someone navigating a relationship with their homophobic family members.

Those stories are worth telling. It is hard to be queer in this world. But the focus of many of these stories was on queer pain. Queer trauma. It felt exploitative. It felt prescriptive. And with what little I know about the entertainment industry, I suspect they were mostly told by cisgender, straight folks.

Now, we have Heartstopper, and The Last of Us, and books like The Sun and the Star, Hell Followed With Us...stories about queer folks living, stories about queer folks finding joy and love and a life. And so many more of these stories are told by queer folks themselves.

I think expressions of joy from the queer community are so powerful because they reject the stories the world tries to prescribe to us. The world wants us to believe that to be queer is to live a tragedy, but honestly? To be queer is full of beauty and joy and life.

I have seen fewer stories about autistic joy, maybe because I didn't know I should be looking until too recently. But I suspect something similar is true, about the power of rejecting the story prescribed by the world. I am not naive enough to say that being autistic is easy in this world. But it is beautiful. My mind is beautiful. And it isn't a tragedy.

The revolution, I believe, comes in saying no to what the world tries to prescribe to us. It comes in telling our own stories. It comes in letting out our expressions of joy, our happiest stims.

To anyone who finds this post, I hope you feel some joy today.

[autisticbooknerd01]

Isolation

I came out as queer before I found out I was autistic, but the experiences were, in many ways, the same.

Before I had the words for either of them, I knew I was navigating the world on a slightly different plane compared to most of my peers. When I was still learning that "marriage is between a man and a woman only," I had my first crush on a girl--the most intense crush I've had to date, though nothing came of it (we were twelve). I knew I communicated in a way that was a little bit wrong, that people thought I was joking when I was serious, that I was serious when I was joking, that I made too little eye contact, too much eye contact, didn't smile enough, was cold and antisocial.

I knew I know now: I am autistic.

I just didn't have the words. And it hurt. So much. I was given the words, but I was also given permission to advocate for myself, only I don't know how because I was never told I could prior to this past year. I was never given the chance to develop the skill.

And...I have lower support needs (though they fluctuate depending on the situation) and I am high masking, so it was never like my world was inversed compared to those around me, but it did feel like the ground I walked on was crooked.

I don't know how many people reading this will have run cross country, but sometimes, you end up running on an angled slope. You aren't running up a hill, but you're running across the slope of the hill. You're fighting gravity. Your calves burn. And you're racing, so you desperately don't want to stop.

That's what it felt like. And walking on that crooked ground, running on that angled slope, it gave me (metaphorical) chronic pain. I could keep going, but at what cost?

There's something isolating. About feeling that way. About knowing that you are not quite "normal," but that you technically CAN do something. I didn't want to call attention because I was so afraid I'd be proven wrong. That it WAS normal. That life WAS this hard. So I didn't start looking into diagnoses until I couldn't handle it anymore. Until I fell. Until I was spiked in the foot (it happens when you run cross country).

My diagnosis was a starting point. It was validation. "Yes," my psychologist told me. "It was hard. It was an injustice that you had to live this way for so long."

But it wasn't enough.

I was still lonely.

I needed to find my people. Other neurodivergent folks. The way I did when I came out as queer.

And when I did, it was truly revolutionary.

More on that later.

[autisticbooknerd01]

Empathy

When I was first learning about autism, I heard a lot of conflicting things about empathy. The stereotype, of course, is that autistic folks struggle with empathy. But lots of autistic content creators were talking about their experiences with hyper empathy. And I sort of related to both?

Let's start with hyper empathy. Back in high school, my best friend convinced me to watch The Politician on Netflix (which is an okay show I guess but check the content warnings). In the show, one character talks about how when he walks into a room, he feels everything. And there's not enough positive emotion to balance him out. When I watched that scene it made me cry, because: same.

I walk into, say, a classroom, and I'm surrounded by several people with nervous systems in various states of (dys)regulation. And my nervous system tends to reflect that back. So yes, I feel what others are feeling.

But that's not the same as being able to identify the feelings in question.

One of the most incredible (and inconvenient) things in my life is the way I experience emotions. I experience them first and foremost physically, often accompanied by stims. Most of my emotions manifest physically in my chest. The problem I have is that several emotions feel the same. Anger and stress are like a weight. Hope and anxiety flutter and run. Joy and excitement bubble. I can't always differentiate between them in the moment, though mindfulness practices in therapy have helped.

(This is likely alexithymia, which anyone reading should go research.)

Empathy is ineffective if you can't identify what the emotions of other people are--even if you can feel them physically. At least, that's my experience. Once I know why my chest feels tight or fluttery or bubbly, I know how to show up for someone, but until I know, I can't and I probably won't for fear of messing up.

I wonder whether alexithymia contributes to the stereotype of autistic folks struggling with empathy. I'm sure some people do really struggle with it--like all humans, the autistic community is incredibly diverse. And I have no way to test this. But I do wonder.

[autisticbooknerd01]

Diagnosis

I brought my mom to my assessment. She is the "me translator." The one who can hear what I'm trying to say and unscramble the message for others. And she's better than my dad at emotional support. More intuitive, anyway. In many ways, my dad and I are the same person.

I had therapy two weeks before I had my follow up appointment. My therapist told me it appeared like they were leaning toward a yes diagnosis. Hope fluttered in my chest. (Most of my emotions are felt physically in my chest, and hope flutters like the wings of a small bird. Sometimes it feels like anxiety, but hope is more like a hummingbird and anxiety is more like a running rabbit.)

My mom was there during the follow up. The psychologist told me she and her team had come to the conclusion that autism did describe my experiences, and I started to cry, but I was grinning. So happy to have my answer.

I'd known for 18 months that I was most likely autistic. I'd had an inkling for awhile that my internal experiences weren't "normal." There is OCD in my family; I thought maybe that explained it.

And then I watched a YouTube video about how autism can show up in people socialized as women. And another. And another. And then I read Unmasking Autism by Devon Price. And it made my life make sense.

My parents were doubtful. I sent them that first YouTube video and they learned more and they were convinced.

For 18 months, I operated on the assumption that I was autistic and it transformed my life and improved my mental and physical health.

Self diagnosis is valid. But I needed to know for sure.

"I'm autistic," I said to my mom when we left the appointment. I was still crying. Still smiling. "I'm autistic. I wasn't making it up in my head." And then, "I'm disabled."

That was harder. I was taught that disability was a bad thing. But I am. I am disabled. I am proud to be disabled, but it is hard to live in this world with my brain architecture.

Learning I was autistic didn't make my life magically better. But it was a good start.

[autisticbooknerd01]

Autism

I don't know if I will keep this up. I don't know if anyone needs to see this. But I want to write it.

I was diagnosed with autism last September. And it was scary as hell. And I was given no next steps and a heaping load of trauma to process, because it is traumatizing to go through this world as an undiagnosed autistic person. I had no language to understand myself or why I seemed to navigate the world on a slightly different plane from everyone else. Others were given the benefit of the doubt while I was labeled difficult, lazy, strange.

If I keep writing here about my experiences, it will be an attempt to process those feelings, but it will also be an attempt to tell others they are not alone. That it will be okay, even the world seems to want to hurt us.

I am not an expert on autism. If you've met one autistic person, you have indeed met a singular autistic person. But I think it's important for more of us to talk about living in an autistic mind and body from our perspectives.

Here's my attempt.