Things I Love About Autism: hyperfocus and special interests

I feel like when allistics talk about autism, it’s usually a narrative that being Autistic is some sort of tragedy. We’re a missing puzzle piece. They need to “find a cure”. Sometimes Autism parents talk about “losing” their child to Autism (even though their child is still completely alive, just…not neurotypical).

There are sometimes things I find inconvenient or annoying about being Autistic. My sensory issues are usually handled with things like wearing sunglasses or “ear protectors” (noise cancelling. headphones). However, I don’t really like crowds and they’re an invitation to a meltdown/shutdown. And there are a lot of cool events that happen in crowded places, and I usually either opt out or spend several days recovering from being around so many people. Also, going non-verbal can be scary if I’m not around people who are willing to use text-based communication with me. And when I can’t avoid them: meltdowns and shutdowns are the worst.

However, there are definitely things I love about being Autistic. To the point where if someone offered me a so-called “cure”, I don’t think I’d take it, because I wouldn’t want to give up the good stuff.

Let me introduce you to an Autistic super power that we also share with our ADHD brethren: hyperfocus. Hyperfocus is basically the mythical state that neurotypicals refer to as “flow.” There’s all sorts of tips and tricks for trying to achieve a flow state, because you can get a lot done when you’re in flow. It’s basically immersing yourself in a topic or an activity, sometimes for hours, and it feels like time isn’t passing. You can get so much accomplished! Or as I like to think of it, hyperfocus for me is like I am a snake unhinging my jaw and swallowing knowledge whole.

Unfortunately, it’s hard to pick what you hyperfocus on (especially if you have ADHD or executive dysfunction). It has to be something that grabs your interest; I can’t just turn on hyperfocus for anything. It would be too powerful, so the universe had to nerf this skill somehow.

Hyperfocus is just…a lovely way to spend your time. It’s easier to tune out sensory issues because your whole being is just consumed by The Thing You Are Focusing On. And I generally find it rejuvenating rather than tiring. Although if I try to push it further than its natural cycle, I can get exhausted almost immediately. There is a rhythm to hyperfocus/flow, and it often means you can’t force the attention…you just have to kind of ride along until it runs out naturally.

I am lucky in that I find most academic topics interesting. So when I was in school, it was relatively easy for me to learn new things. I got curious about the topic, and then I unleashed my hyperfocus and just rode it until I had learned whatever I was supposed to learn.

Unfortunately this meant that the few times I was bored in school, learning became this impossible morass. Sometimes I learned an entire chapter in a day or so when the teacher planned to spend weeks on it. At this point I definitely had a hard time maintaining focus, because I wanted to move on to more interesting things, not go over the same topic. Another downside is that I don’t really have study skills; I either learn things completely and immediately at once, or I memorize just enough to pass a test and then forget it. (This is a common “gifted kid” problem.)  I don’t know if there is a way for me to more slowly learn something that is difficult and doesn’t tap into my hyperfocus, because honestly I’ve never really had to learn. Every superpower has a price, right?

Hyperfocus becomes exponentially more potent when combined not just with something I am curious about, but with a Special Interest ™. You may be familiar with Autistic special interests because allistics tend to complain about our special interests: some very common ones are learning everything about trains, or Horse Girls ™ learning basically everything there is to know about horses. (Note: people who write the diagnostic criteria for Autism have historically overlooked Autistic special interests as they occur in cis girls and trans people).

Here’s an example of some of my special interests:

• dogs, cats, and animal behavior
• history, particularly the history of the African diaspora
• new research on my chronic illnesses (for example, fibromyalgia, MCAS, POTS, hEDS/HSD)
• human anatomy (as pertains to areas of my body that hurt)
• knitting, spinning yarn, and fiber arts history
• queer history
• writing

It’s generally easy for me to hyperfocus on my current special interest. It’s like I’m playing a video game and I have multiple stacking skill buffs; boss fights become a piece of cake.

I specify “current” special interests because my special interests rotate. For example, I used to be into Everything Horses. I was in elementary school and read every Saddle Club book I could get my hands on; every Misty of Chincoteague book. I read non-fiction books about horses. I did a science fair project on horse evolution. When I learn about a special interest, I learn a lot of different aspects of a particular topic. Until somehow my brain gets full or has enough or something, or in the case of horses when I discovered that I actually did not really like riding horses competitively and that was what most stable classes are geared towards. And then I moved on to dogs, which has become one of my lifetime special interests even though I do not currently have a dog.

More recently, I went through a period where I learned everything I could about knitting. I taught myself to knit, and then the next month I knit a baby sweater. In about 48 hours. Sometimes I wonder where exactly the line is between my own hypomania and special interests + hyperfocus. I used to not know what special interests and hyperfocus were, and so when they would happen I would be afraid that it was a sign hypomania (and then the inevitable deep dive into depression). It blocked a lot of joy from my life, because I tried so hard to resist spontaneously learning everything I could about a topic. As I’ve relaxed about this, it has helped both my autism and the way I manage my bipolar II.

I also taught a friend of mine how to knit, and they are quite a successful and prolific knitter now. But when we’ve told other knitters how I taught my friend, they’ve been surprised. I teach how I learn: the broad outline of a topic, at once, so you can understand all the different parts and the principles behind them. For me, once I understand the basic underlying principles of something, I can learn and do and try new things so much faster. Each new piece of knowledge fits into the pattern of how this new exciting thing works.

How are you supposed to start a project if you don’t understand what kinds of yarns are used for what kinds of projects? How are you supposed to pick knitting needles if you don’t understand that bamboo needles are easier for beginners, but metal needles help you knit faster? Dear readers, my friend may not have absorbed everything I said that night (which is why I provided them with a handout), but they learned a lot about knitting much faster than your average beginner.

It is good to have appropriate outlets for special interests, because sometimes special interests can result in a common social disconnect. An allistic person making so-called small talk might say, “Oh, what are you knitting?” And because I tend to think about special interests as like, the entirety of it, it’s very difficult to parse down a short answer like, “A hat,” which is what allistic people seem to expect. If I don’t realize what is happening, I can embark on an informative presentation on the history of this particular hat pattern as used during World War II knitting; where I got the fiber and its emotional significance; how I’m making up the pattern based on Barbara Walker stitch dictionaries and what those are and how great Barbara Walker is.

It can be really hard to not just…launch into sharing all this information. Because I find it so interesting, and I want to share, because wouldn’t most people find this interesting? It’s so cool, and also it’s dominating my brain and it’s all I can think about so it can be hard to think of anything else to talk about. This is why I (and some other autistic people) tend to do well with say, knitting groups, where everyone actually is interested in talking about the benefits of Kitchener stitch.

Without these kinds of outlets, it can be really lonely as an Autistic person: there can be so much going on with us about trains or knitting or whatever, and people often don’t want to hear about it because allegedly that’s not how conversations work. Whereas when I’m with other neurodivergent people, I can often conduct a sort of exchange: we trade off talking about our special interests. And honestly, I may not know what a friend is actually talking about when they’re doing a deep dive into their special interest, but I love their enthusiasm. I love seeing the light come on in their eyes. I love giving them an outlet to talk about what they love without shame, or worrying that they’re secretly boring me.

This is one of the frequent disconnects between allistics and autistics in terms of making conversation, and I wish sometimes that allistic people would learn to meet us in the middle. Maybe they’d learn something about what we’re excited about, or maybe they’d just enjoy watching the joy in our eyes. And I’d personally be happy to give them a chance to talk about whatever they want, if they wouldn’t get that bored spaced out look that means “I am tuning out what you are saying because this isn’t how I do conversations.”

Special interests and hyperfocus also help me cope with brain fog. Brain fog is a symptom of fibromyalgia (and other conditions) that causes impaired cognition. Things like aphasia, difficulty concentrating, difficulty reading paper books vs ebooks (possibly just a me thing), etc. It can make reading and processing information very difficult. I struggle doing things like processing verbal information over a phone call or remembering a simple series of numbers. However, if I can somehow initiate my hyperfocus and/or special interest, I can sometimes spend a few hours with much fewer cognitive difficulties. It’s like it somehow balances out. But again, I don’t always get to pick what I hyperfocus on, and I don’t always get to pick my special interests.

Currently, I’m really tempted to go back through this post and change the format into the streamlined essay pattern I learned in school. An introduction, some sort of thesis statement, individual paragraphs, and a conclusion. This post is more reflective of how I think. It’s not stream of consciousness, but it’s a lot more thoughts about hyperfocus and special interests than I would share if I was trying to write a traditional essay. It’s the details and the how of it and the underlying structure, so maybe you can really understand what I’m talking about.

If you take away one thing, though, let it be this: hyperfocus and special interests are delightful and as satisfying as stimming. Let autistic kids like trains (or horses).

Book Review: Nine of Swords, Reversed by Xan West

For detailed content warnings regarding Nine of Swords, Reversed — subject matter which may be discussed below — please refer to Xan’s website.

[Image: cover of Nine of Swords, Reversed. It is a hand drawn cover featuring a fat person with curly hair and chest hair (Dev) propped up in bed. In front of the bed there is a small table with a tray of food, a napkin, and a small book. Kneeling in front of the bed is another person (Noam) with short, curly black hair. They are smiling up at the person in the bed; Dev is cupping Noam’s cheek with xyr hand. Propped up against the wall is a cane just like the one I use.]

There is a feeling when you read good representation of yourself. “Other people feel this, too.” Or sometimes, “Who looked inside my head and wrote down what I was thinking?” This is what I felt when reading Xan West’s Nine of Swords, Reversed.  

I’m still kind of autistically processing the book, because the sheer goodness of it was kind of overwhelming. Maybe there really are people like me?

I fear that this review isn’t very coherent if I just yell THIS IS A GOOD BOOK YOU SHOULD READ IT, so instead I’m going to talk about some parts I liked a whole lot. Where I saw myself, and maybe gasped a little at seeing myself. This book told me things about myself that I hadn’t really articulated clearly, or that I hadn’t really thought were a big deal and now I’m rethinking how I see myself. I mean it when I say THIS IS A GOOD BOOK YOU SHOULD READ IT.

There is a content warning for the descriptions of both meltdowns and physical pain. These were some of my favorite parts of the book, because Xan West so accurately described what it’s like in my head at times when I’m too brain fogged, in pain, or non-verbal to express what I am feeling. I feel like this would be a good short book to share with people who want to understand more about what I’m going through, and more about what my life is like.

The book also deals with internalized ableism, which is something I’m still trying to work my way through at times. The disability community helps, but so do books like this that outline here and here are ways internalized ableism can mess up your life and your relationships. I’ve written some about internalized ableism and relationships on my blog; it was nice to see these experiences reflected in a work of fiction.

“We had each been alone with basically the same shit, just a different side of it, isolated from each other instead of supporting each other.”

Dev, the main character in the book, also describes autistically processing when pain is suddenly relieved. I didn’t know other people needed extra time to process this change in sensation! I’ve rarely even named it for myself, because pain relief is supposed to be universally good, right? But I find it sometimes overwhelming in a sensory overload way to suddenly feel…good, in my body. It’s strange, and it’s a change, and it takes awhile to adjust. Welp, Dev feels this too.

“It felt like ze was rubbing soft sunlight into my skin and the sensation was so much to process that I couldn’t speak, or even look. I closed my eyes, counting my breaths, feeling the pain ebb away. In some ways, its immediate absence was sharper, harder to tolerate.”

Dev also describes a way of checking in with xyrself. Several times throughout the book, xe describes a feeling of rightness of a “ping” within themselves. I don’t know if that’s a mage/pagan thing, an Autistic thing, a human thing — but I’ve never really seen it discussed in fiction and it’s important.

I also really enjoyed the discussion of gender-fluidity. All three characters in the book are genderfluid — as am I — and it was just so heartwarming to see other people checking in to see what gender they are at a given time. There is also a very helpful section in the beginning of the book discussing genderfluid identity and pronouns. It was nice to both see these characters on the page, and see them presented as no big deal. There are so many ways authors have done transness wrong on the page; Xan West does it right.

Nine of Swords, Reversed also addresses issues with inaccessible housing, and what it feels like to be stuck in only one part of your house because of say, stairs. I related to this very much.

The book is somewhat different from Xan West’s usual writing; they have published erotica/erotic romance in the past. This book depicts a D/s dynamic that is healthy and beautiful, but refrains from anything overtly erotic. It is simply about the relationship between two people who love each other, which also includes service and domination. And what happens when that relationship is impacted by internalized ableism, and avoiding problems rather than addressing them.

Nine of Swords, Reversed is such a sweet story. If you are looking for fat representation, genderfluid/trans representation, witchy representation, Autistic or chronic pain representation — you will find it. If you’re looking for kink that isn’t sexual, this is your book. If you’re just looking for a sweet story about two people in love figuring out their communication issues, you’ll find that too. I cannot recommend this book enough. IT IS GOOD, YOU SHOULD BUY IT. *happy flail* *squees*

 

Why I sometimes wish for death : on understanding suicide

[Trigger warning: this post contains non-graphic discussion of suicidal ideation and attempted suicide, as well as non-graphic discussion of sexual assault and rape culture]

Whenever a famous person completes suicide, there is always public and media speculation as to why such a rich or successful person would want to harm themselves. Explanations are often overly simplistic: it was their illness; it was medications; it was substance abuse. I know the surviving friends and family members of people who complete suicide also wonder why or how this could have happened.

Personally, I have to answer what led to my suicide attempt every time I go see a new mental health provider. As part of my healing, I’ve also independently reflected on what led me to the brink of death. Over time, my explanations have evolved.

It’s as though every time I’m forced to revisit this experience, I unwrap another layer in what led me to that terrible place. There is no one, simple explanation. It’s multi-layered and complex, and requires multiple frameworks to even begin to comprehend.

It is my hope that sharing these perspectives can help deepen our societal understanding of suicide and chronic suicidal thoughts, so we might better address them.

***

When I was a freshman in college, I nearly died. I remember thinking that life was filled with so much suffering, and just not worth living anymore. I have experienced chronic suicidal ideation for decades. Yet freshman year was the only time I tried to take my own life. Sometimes I wonder, why was it different? What wasso bad that I thought death was the most obvious solution?

The most simple explanation is that the days were getting shorter; the darkness was causing Seasonal Affective Disorder. Combined with the stress of midterm exams, my brain spiraled into a depressive episode. Depression is a lying liar who lies, and I couldn’t see any way that I would really feel happy again.

My parents were extremely supportive and wanted to help; they took me to a specialist in adolescent mood disorders for further help. His explanation was one that I’ve carried for a long time: I’m bipolar. The medication I was on for depression triggered underlying mania.

Although I’ve never experienced a full manic episode, the doctor believed I experience “mixed states” and hypomania. What the specialist described as mixed states are often when I’m most at risk for hurting myself. I have both the deep despair of depression, and the energy to get out of bed and do something with those feelings.

After a year or more of trying to find a medication that would help, I went back to college. Rather, I transferred to a different university; my school refused to let me back unless I swore before the Honor Committee that I was “cured.” Apparently, by attempting to take my life, I had violated the school’s honor code. This response from schools is actually disturbingly common.

It is also part of why I didn’t ask for help when I was in crisis: I was afraid of being expelled. Systemic ableism in academia certainly played a role in my suicide attempt.

Sexual assault was also a factor. The school’s orientation included a section on sexual assault. At the time, I thought it was progressive to give women rape whistles and encourage us not to walk alone at night. I now realize that though this education was well intentioned, it situated the responsibility for preventing assault on the victims rather than the perpetrators. As I tried to be polite with my friends’ abusers, and wrestled with my own unnamed assaults, this kind of message burned in my consciousness. Perhaps it had been my fault. Why did I go with him? Why didn’t I carry a whistle? Why didn’t I say no louder, better? Why didn’t I make him hear me?

I can now name this victim-blaming as part of a larger pattern of rape culture. The stress of coping with it was certainly not good for my own mental health, and it also contributed to my own feelings that life was not worth living. Certainly, PTSD and trauma played a role in my suicide attempt. I was hypervigilant about walking alone at night; I worried about predators living in my dorm; I didn’t have confidence that the institution would take care of me if I spoke out about these problems.

I also knew there were abusers around me. Before I left for my first college, two of my friends had pulled me aside to warn me. Independently, they each wanted to warn me that a person who had assaulted them was going to my state university. More than that, they wanted to warn me that they’d recently found out their abusers were going to be living in my dorm. Neither friend knew each other; their assaults were somewhat different yet depressingly similar in the way that all rape is similar; neither of them wanted to have their experiences publicly known.

It was not my first experience with the whisper network, yet it was a difficult one. One of my friends’ abusers had used alcohol, so that she was too incapacitated to fight back or protest. In our new dorm, he frequently held drinking parties and served the same brand of alcohol he’d weaponized against my friend.

I felt like I couldn’t betray my friend’s trust, but also didn’t want one of my new college friends to have the same experience. I worried that even if I tried to keep my friend out of it, the whispers might somehow be traced back to me. I was worried about the same kind of negative attention my friends were. I was also worried that someone with a seeming pattern of abuse would not hesitate to use that violence against me. So instead, I went with my friends to the parties in his room. I drank and ate nothing, but tried to make sure there was a group of people there, and that they got back to their rooms safely.

I cannot begin to express the stress of knowingly being in the same room with someone who had hurt my friend so deeply, and trying to prevent it from happening again. The secret burned in me, as did his seeming flagrant disregard for the damage he had caused. I am grateful to my friends for sharing what they did with me, and I wish that they could have spoken publicly about what happened. I wish that survivors were believed, instead of vilified or blamed for their assaults. Rape culture made me long for death.

I also didn’t realize that all of this was forcing me to deal with my own sexual assault. I was convinced that I was simply concerned for my friends, yet I was experiencing symptoms of PTSD. It would take several years for me to realize it wasn’t just “bad sex”; I had actively been trying to refuse sexual acts. My lack of consent had been ignored.

There is no flashing sign that lights up when you’re abused which says, “This is abusive; you said no and this person ignored it. You did not consent to this. No one deserves this.” Rather, an essential part of how abuse works is to trick you into thinking that what happened is something you chose, or somehow your own fault. “Why did I date him if I didn’t want that to happen?” is one way this abuse and oppression is internalized.

On campus, I was jumpy and on edge. I was hyper vigilant; it was hard to sleep; I would lose track of my body in what I now know is dissociation. My feelings were many, and overwhelming. It wasn’t until I was able to namemy experiences as PTSD that I could access treatment. Meanwhile, the physical and psychological effects of my assault continued to wreak havoc on my health. I believe the stress of the rape culture on campus, the abusers in my building, and my own untreated PTSD contributed to my suicide attempt.

More recently, I’ve begun to add another clue to understanding my attempt: I’m Autisticin a world designed for allistics. There have been recent studies about how most Autistic people die before age 40; we are also at a higher riskfor completing suicide. The stress of systemic ableism and Autistic burnout play a role in this, as well as common Autistic experiences such as traumafrom bullying and “treatments.”

As I’ve learned more about this flavor of neurodivergence, I’ve begun to cope better overall by accommodating my sensory access needs, giving myself down time in between social engagements, a consistent routine, and stimming. When I went to university – both times – I had none of this information. I didn’t know that the typical challenges freshman face could be life-threatening with unmanaged Autism.

Without realizing it, I had been trying to cope with these multi-factorial stresses of my first university by regulating my sensory inputs. I was stimming more than I had in years. Yet I had spent a lifetime trying to suppress visible neurodivergencedue to bullying and other social stigma. I didn’t recognize these behaviors as the coping tools they were.

I worried that these coping skills were symptoms of an underlying pathology. I worried that they were unhealthy, when stimming is anything but. I tried to force myself to stop, to be more normal. In doing so, I may have inadvertantly contributed to Autistic burnout.

Currently, Autistic burnout is something mostly discussed within the Autistic and neurodivergent communities. It is not listed as a symptom of Autism in the DSM or most psychiatric organizations. Yet it is very real, and it can be deadly. It almost was for me.

***

I think it’s essential that we name that the individual problems I and others encounter are often symptomatic of systemic struggles. My suicide attempt was impacted by medications and their side effects, but equally devastating were systemic problems: delays in diagnosis; rape culture; lack of understanding and awareness about Autism; ableism in academia.

To quote Audre Lorde, “If I cannot air this pain and alter it, I will surely die of it. That’s the beginning of social protest.” Whatever individual factors may be at play in each person’s own wrestling with the void, we all live in this white supremacist, ableist, rape culture. That will surely play into any suicidal impulses that may occur because of brain chemistry. To fully address suicidality, we need morethan just medications and access to therapy. We need to help dismantle the oppressive systems that drive so many to wish for death.

On Disabled Joy (and Sorrow) : feelings are complicated

Sometimes it feels like we spend so much time pushing back against the idea that disabled lives are not worth living that it’s hard to take a moment to grieve, or feel our feelings.

I’ve been thinking about this a lot lately because my chronic pain and associated conditions are flaring; I’m having more trouble doing things I love. I’ve been waiting literally years for Justina Ireland’s book Dread Nation to finally be released. Now that it’s finally available, I’m at a level of brain fog where I can’t process novels. It’s hard enough to read a long twitter thread or a news article.

For anyone who’s not familiar, the pure social model of disability states that we’re not disabled by our conditions, but by an ableist and inaccessible society: the lack of accommodations is what is disabling. There have been addenda to the social model, often from people who have conflicted feelings about medical interventions and treatments. I have chronic pain: the pain is disabling.

Accessibility would help my chronic pain. More ramps would mean less stress on my joints; so too would more public places that had chairs that were not hard plastic murder for my sacroiliac joint. Yet ultimately, I also need some kind of interventions to help manage my pain: be they physical therapy, medications, braces, mobility devices, a fuckton of Epsom salts, a lifetime supply of Thermacare wraps, or some combination of the above.

There is a liminal space where disabled people can both love ourselves, can speak out against the inaccessibility of society, and also be exceedingly frustrated about a night of painsomnia.

I feel like my grief comes in cycles. I used to be confused about this, like becoming disabled was some sort of thing I was supposed to adjust to and then get over. But grief isn’t linear, even for people who have passed or beloved pets. It hits you at odd moments.

I remember when my 16 year old terrier finally passed, I was cooking. I suddenly realized that it was just me in the kitchen: there was no wiggly terrier body staring at me, or who came running as soon as the sound of the knife hitting the cutting board echoed to his doggie bed. I just started sobbing over a pile of carrots. Grief is funny like that. It comes in waves, some small ripples and some tidal waves that threaten to consume you until you address the feelings behind them.

It took me about a decade after my fibromyalgia diagnosis to realize that I was grieving for the able self I thought I was. It has the same qualities of hitting me at odd moments, as though I was grieving for a person that had died. It was strong when I was first diagnosed with fibromyalgia, and it made actually coping with occupational therapy and physical therapy and everything difficult. I was deep in some sort of denial-bargaining-anger cycle, as I started thinking of all the dreams and plans I had which were now inaccessible to me. Hiking the entire Appalachian Trail? Probably out, although maybe I could do pieces or flat trails. Outward Bound? Definitely out. College? I hoped it wasn’t out, but it would need modifications and take much longer than I had anticipated.

The grief that is hitting me now is smaller ripples of this larger tidal wave.

I learned to ride a bike after I was diagnosed with fibromyalgia. I was diagnosed with bursitis in both hips in my mid-20s, which in case you’ve never experienced it is extremely painful. I still didn’t know I had a connective tissue disorder that was systemic, so I thought the physical therapy was a way to recover my previous level of function. I had never learned to ride a bike as a child, so I coupled a lot of physical therapy with learning to ride as an adult. It was, briefly, glorious. I worked my way up to a weekly six mile bike ride.

Then summer hit, and medications changed, and something triggered something else, and I got an extremely bad POTS flare. It took three years to get diagnosed, and I haven’t been able to balance on a bicycle. I have a trike that I rarely ride, but keep because of the hope that one day I may be able to. Every time I try, my heart rate elevates to a rather riduculous amount and I end up in a giant POTS flare.

Similar things happened with knitting. I taught myself in the midst of a manic episode; it was the only thing that would quiet my brain. I learned quickly, and then I even taught a friend. I even learned how to spin yarn, how to dye yarn, how to knit cables. There’s still so much more I want to learn: how to weave; how to knit entrelac; how to crochet without my gauge being so tight I risk breaking the crochet hook. Yet because of my hip pain, it’s difficult to sit up. I have to budget which activities I do with my hips and my hands and how much I do them, and often it’s a choice between writing OR knitting OR playing video games OR cooking myself dinner OR going to the doctor.

I feel like I keep adjusting to a new status quo — finding ways to cope, meaning, things to fill my day — and then my status quo changes again. I know that life is change; you don’t have to quote me things about death and taxes, or point out that much of Buddhism is about impermanence.

Yet even after a decade with chronic pain, I still grieve and rage and yell at the universe when I lose some piece of myself that is important. I remember when I was first diagnosed and I was so upset because I had to switch from a manual transmission car to an automatic. It felt so huge and so terrible to have to get a new car because my body couldn’t do the same things it did before. Currently, I can’t drive at all. We’re not even entirely sure why, it’s just no advisable when I keep falling and it seems like my feet aren’t communicating with my brain so well. Maybe I could solve it with some of those hand controls, a brake and an accelerator by the steering wheel. Except I’m not entirely sure my brain is communicating with my hands so well either — again, not that anyone knows why. Part of me worries about how my body will be in another ten years. If this is more degenerative than I first thought, what else won’t I be able to do? What other beloved hobbies, passions, and places will become inaccessible to me?

 

It’s April, which means it’s “lots of neurotypical people share misinformation about Autism month.” (Reminder: don’t light it up blue, wear red instead.) A lot of that misinformation is about how tragic our lives are supposed to be; about how maybe we need cures or ABA or genetic testing so we don’t have to exist anymore. Our murders are normalized because, again, our lives are supposed to be pure uncut tragedy so it’s really some sort of blessing in disguise if someone kills us, right?

There have been some great social media campaigns highlighting disabled joy, because honestly allowing ourselves space to feel joy is a radical act.

Yet there’s another truth, no less true than that disabled joy is radical. Disabled people need space to feel whatever we feel about our disabled bodies, to work through the complexities of grief and internalized ableism. Even just to have days where we feel kind of meh about our outfits and bodies because everybody has those days.

Lately, my disabled self has been taking some time to metaphorically stomp my feet and yell about how this isn’t fair. I’ve also just been tired: tired of picking myself up and dusting myself off, and learning how to cope with what I’ve got (again).

I don’t have a great sweeping lesson from all of this other than: sometimes you just have to feel your feelings, even if they’re messy and complicated. Even if they’re both loving yourself, but hating things like how your body keeps being awake with stabbing nerve pain at 3 am. Loving your special interests, but hating that so many places are sensory hells capes and it makes it really hard to deal with things like telephone calls or even just hard to find a shampoo that doesn’t give you a migraine.

Life is full of contradictions. Look at my cats: I love them, but also I wish that sometimes they wouldn’t wake me up at 3 am because they’re stampeding around the house.

Part of why the Able Gaze is harmful is because it reduces our disabled existence to stereotypes: to inspiration porn, or supercrips, or “benefits scroungers.” It doesn’t allow us the space to be full and complete human beings, with a range of emotional experiences and complex feelings about our bodies. (I am pretty sure everyone has complex feelings about their bodies, disabled and able alike, even though the exact nature of those complexities are varied.) So in a way, you could say my activism right now is allowing myself space to have a full range of human feelings about my body, instead of trying to fit myself into a box of “acceptable” feelings.

I share because I don’t think I’m alone in these messy, complicated, hard feelings. Hopefully, this can make other disabled people feel less alone in their struggle with body image or give words to explain this to other people.

It’s not an easy space to inhabit. It’s more of a practice than something I’ve perfected. I’m trying to extend the same compassion towards myself as I feel a lot of complicated, messy feelings about my body. I try to remember that this is just part of being in a human meat suit. I kind of hate it, but I’m coping.

The price of Autistic masking, or Let there be stims!

I used to know what my sensory needs were, or at least well enough for your average child. I knew, for example, that labels in clothing were very bad and horrible. My mother, to her credit, attempted to order clothing without labels and diligently cut the labels out (and then redid it again when the first pass with the scissors still left something distinctly wrong at the back of my neck). I was less inhibited about stimming, not that anyone called it that. It has taken me years to get that knowledge back.

There was a fad in my fourth grade classroom of pouring glue into the pencil holder inside your desk and letting it partly dry, then playing with it like it was putty until a teacher noticed. I was usually a very rules-oriented child, but there was something so soothing about having something in my hands while the teacher talked (at least until I got in trouble for playing with glue). Yet as my peer group started to outgrow childhood toys, I had to learn more stealthy ways of stimming. Gel pens became my go-to for years; I just needed something kinesthetic to do with my hands so I could process all the auditory information during classroom lectures.

I also became more adept at masking as neurotypical, not that I had those words. I skipped a grade, not that it was something I intended to do. It’s just that the coursework part of classes was so mind-numbingly easy, and the boredom was like torture. I was one of those annoying “gifted” kids for whom the answer was just there. I am actually a terrible student because for the most part I never actually developed study skills. I just understood how to solve or answer a problem by looking, mostly. For math classes, I didn’t quite know how I knew the answers and frequently got in trouble for not showing my work, at least until I learned to double check my answers by “showing my work” the way that everyone else solved the problem. I buried myself in novels and learned a sense of what words meant, but on the rare occasions people asked me to define a word with other words I would flounder. It’s like the words routed back to concepts; not pictures exactly but the context I’d read them in.

I didn’t know how to handle the social aspects of knowing the answers, though, nor did I know how to handle the social fallout from skipping a grade. So when I began high school, you could say I assigned myself an additional assignment: blend in as much as possible, so I stopped accidentally alienating my peer group through things like “answering rhetorical questions” and “raising my hand every time I knew the answer to a question” and “dressing not quite like a girl” (because, spoilers, I’m not actually a girl, I’m non-binary and genderfluid).

I became very adept at camouflage, at mimicking the girls around me, their mannerisms and interests. As part of my camouflage, I learned how to wear uncomfortable clothes. I scoured the stores for girly shoes that didn’t make my feet hurt too much. (My hypermobile joints still regret these decisions.) Occasionally I wore make-up, but never quite felt comfortable in it. I always felt like it would be revealed that I was secretly a fraud. I didn’t realize that wearing masks has a price; you can lose yourself if you spend too long pretending to be someone else.

Now I’m older and it feels like I’ve spent so long trying to find my way back to the self I was before I gave it all up for the illusion of belonging. I’m comfortable enough with myself now that I actually do belong as myself, among people who will actually accept me for myself. I’m okay telling the people who dislike me that it’s their problem.

Yet that camouflaging took a toll. To mask as neurotypical, I had to learn how to suppress all the signals from my body that were screaming “labels are wrong!” and “you hate this texture!” and all these other important messages about my sensory needs. I don’t know if what I did was just to bury it deep inside of me, or train my brain to ignore it, or just teach myself to constantly dissociate ever-so-slightly from my body. But whatever it was I did to give myself the illusion of “normalcy” and being neurotypical, it wasn’t worth the price.

I feel like I made a very bad bargain with a sea witch, my voice and incredible pain in exchange for a set of legs. Except I don’t actually remember signing any bargain, and also the sea witch was myself. I would like to return this terribly ill-fitting neurotypical mask in exchange for an awareness of what my bodymind actually needs. It would be nice to keep select skills, like the ability to make polite small talk with strangers or make phone calls in a pinch. There must be a less toxic way of doing them, a way that doesn’t leave me feeling ill in the pit of my stomach and slightly disconnected from my body.

[Public Domain Image of the Little Mermaid statue in the Copenhagen harbor]

Or the days when I misjudge how many phone calls I can actually handle, and then find myself sobbing in a ball on the floor or huddled under a pile of blankets. Those phone calls were not worth it.

I feel like perhaps I am managing to shed the old neurotypical mask, like a snake sloughing its old skin. It’s a rough process with some scary bits in the middle. I’m delicate underneath that mask; I overestimate how much I can handle.

Yet there’s such a joy when I get it right. When I connect with that piece of myself that I thought I’d lost but really has always been there, buried, forgotten, screaming, waiting. I thought that self was lost, that I would have to go searching forever and calling to find them again. But they were always there, hidden, waiting for me to look. I think a bit of that scene in the Disney animated Peter Pan (apologies that my brain has picked a deeply problematic movie to mine for images), when Tinker Bell is injured and Wendy has to say “I do believe in fairies” to bring her back. That magic piece of me was there, and perhaps it was faded and shrinking and small. I just needed to believe in that self to bring them back. It took time to build up enough belief that yes, I am allowed to be myself and people will still like me, but they’re back.

When I allow myself to pick clothes by texture and I’m wearing the good ones, I hum with pleasure putting them on. There’s an extra little bounce of confidence in my step, even if I’m wearing clothes that are “wrong” by weird neurotypical fashion rules like don’t wear navy blue and black together. Trust me: I have made it work and actually rocked it.

Recently I found out that actually, being a passenger on the highway is a little too much vestibular input for me; it’s ever so slightly on the edge of too much to handle. My girlfriend understands that if the car is moving fast, I might need to stop talking and stim. It keeps me from needing to melt. How could I have spent so long and not known this? No wonder car rides so often make me grouchy.

Cats on my lap, purring: the best.

Yarn in just the right texture on lacquered wooden knitting needles in a simple pattern with my favorite audiobook as a companion: it’s so good it’s like it’s taking the bits of my brain that have scattered and hidden throughout the day and coaxing them back into order.

Tea in a hand thrown mug, my hands wrapped around it, just inhaling: it feels like family.

The smell of a rainstorm, on the rare days the pressure change hasn’t already flattened me: it makes me want to dance with joy.

[TW for mention of self injury in the following paragraph only]

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It feels like I’m making up some new version of “These are a few of my favorite things” from The Sound of Music, but honestly stimming is that good. I wish when I was a depressed teenager struggling with self injury, instead of asking me a bunch of questions about why I wanted to hurt myself someone had just handed me stim toys. Because in all of the psychiatric offices I went to, I kept explaining how yes I felt very ashamed and bad about self injury but it just helped me relax. And I got a lot of advice about using red markers and ice and rubber bands to stop the behavior I was doing, and eventually I managed. But what I was doing, in retrospect, was filling the void that was left when I stopped stimming because I was ashamed of stimming and ashamed of being Autistic and different. If someone had just realized and handed me a stim toy or several, or given me permission to stim like I needed to in a healthy way, it might not have taken me so long to figure it out on my own.

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[end TW]

Why don’t we allow ourselves these joys? These pleasures that are just so good for my mental health. Why do we forbid stimming, stigmatize it, shame people for doing it and having delightfully flappy loud hands?

Unlike Autistic people who were diagnosed young, I never had a therapist or a teacher or a parent specifically try to teach me how to be more like neurotypical people. I just knew I didn’t quite fit, and kept being ostracized, and so I molded myself into a mirror of neurotypical-ness in the hopes that I could somehow find a sense of belonging. And it cost me to do so, although I didn’t realize it at the time.

I am sad for my younger self, that I would give up so much of who I am in order to fit in and belong. I was doing it even as I was proclaiming loudly and proudly about being queer, which was its own struggle with self-acceptance and societal stigma. Neurodivergence was something I didn’t have words for, and hoped would go away. I don’t want to encourage straight neurodivergent people to appropriate the closet metaphor, but for me? It was just another closet, and just as bad.

Yet I also understand, because the only reason I’m really able to come to terms with who I am now as an adult is because I have people who accept and love me for my Autistic enby queer disabled self. I don’t have to hide from them. I don’t have to have words all the time. I don’t have to make eye contact. I’m allowed to stim. I’m allowed belonging, and those things.

When Autistic adults tell parents that they need to accept their children for who they are; when we say that ABA is harmful: this is what we mean. We mean that no one should be forced to choose between a sense of belonging and who they are. No one should have to make a choice between having love from other people and loving oneself.