Featured image is of a golden infinity symbol with the phrase “Autism Acceptance” written on it, made by Luan Huynh, found on Google.
It’s “Autism Awareness Month” and I have some things to say.
We don’t need awareness, we need acceptance. Try “Autism Acceptance Month” instead. And to that effect, if you accept Autism, then you just need to start accepting anything you might consider “weird.” You can’t tell someone is autistic by looking at them or without interacting enough with them to know who they really are. Leave your judgment and assumptions behind.
Autism is NOT a developmental disability, disorder, condition, or otherwise “illness.” There are MANY co-occurring conditions that can be in the same body as someone who’s autistic, but that does not mean those conditions are Autism. A non-exhaustive list of these conditions: Tourette’s Syndrome, Dyslexia, Dyscalculia, Dyspraxia, Visual Impairments, Gender Dysphoria, Auditory Processing Issues, Sensory Processing Disorder, Synesthesia, Epilepsy, Hyperlexia, Executive Dysfunction, Bi-Polar, OCD, BPD, Aphasia, Apraxia, Echolalia, Aphantasia, Tinnitus, etc.
Autism IS a neurotype, natural to the range of human diversity. But it is not just a neurotype, it’s literally a whole nervous system. Autistic people, on the whole, receive and process stimuli differently than those who are not autistic. And still, not one autistic person is the same, just as not one neurotypical person is the same.
Autism Speaks and other organizations who advocate for the use of Applied Behavioral Analysis (ABA) or Positive Behavior Support (PBS)—any organization or institution that preaches about needing a “cure” and supporting research for it too—should NOT be trusted. ABA/PBS is abuse, full stop. There is no cure for autism, full stop. We are not broken, we simply have different support needs. And those support needs do NOT include needing to repress what makes us who we are in order to fit a standard expectation of behavior that harms us.
Oh, and PLEASE drop the blue and puzzle pieces. These symbols were not chosen by the autistic community, and are associated with pathology. DO use the gold infinity symbol, or embrace red as the new acceptance color.
Phrases like, “You don’t look autistic, I never would’ve known!” or, “Everyone’s a little autistic these days,” or, “I don’t believe you, you’re so good at [insert behavior or task],” are all harmful! All of these phrases invalidate an autistic person’s lived experience and diminishes their issues with living in a neurotypical world.
Autism doesn’t have a “look” or specific lived experience. Like I said, not one autistic person is the same, and it’s ableist to say Autism has a certain “look.” People who claim Autism has a certain “look” are actually misinformed, or purposefully discriminatory towards those who have external differences.
It is natural for some traits to be present across all types of individuals—that is any expectation within the diversity of humanity. Shared traits, however, does not make everyone autistic.
Just because someone can do something well does not mean they are capable of doing something else well. That’s false equivalency, and that kind of assumption is completely unfair. It is frequently the case where autists excel at something we’re passionate about, but when it comes to doing something more mundane, competence is harder to come by. Dismissing our struggles like this is ableist as well. This goes in line with functioning labels. Functioning labels (high or low functioning) are harmful constructs because they deny autists agency and dismiss lived experience. “High functioning” often results in someone suffering greatly behind the scenes (frequently barely functioning), and “low functioning” often pigeon-holes someone into being less than what they’re capable of. Instead, simply talk about support needs, as everyone’s are different.
It’s important to address autistic people as “autistic” and not “people with autism.” We are not “on the spectrum,” or rather we are, but that’s nothing special, because literally every human is “on the spectrum” (the spectrum of human diversity). Autism cannot be separated out from us, as if it were a handbag we carry. And again, it’s not a disease we need to be cured of. Read here for more information on why identity-first language, instead of person-first, is so important.
Autism enriches the world. We are great thinkers and contributors to our communities. We are innovative, creative, intelligent, funny, positive influences, the list can go on. But we don’t need to contribute or be productive in order to be seen as valid and worthy of love and acceptance, of just being who we are (this goes for *anyone*). We don’t need to be conditioned into something we’re not. We don’t need the world to tell us we have “special needs.” We’re not sick or broken.
It’s time we start looking at the environment in which we’re unfit, instead of looking at the individual like autism is the problem. Why do autistics struggle? Because we don’t fit the mold. Why is there a mold to begin with? We’re all PEOPLE, not clay.
Let’s stop pathologizing neurological differences, and start embracing each other for who we are! Let’s focus on meeting support needs without judgment!
Happy Autism Acceptance Month! Thanks for reading!
[Featured image: pictured is a slice of toasted white bread on a white background. Credit to Adobe Stockphotos]
Here’s to never giving up 🥂
Cw: mental and physical health (mentions su*c*de)
I was such a ham as a kid
Pictured above: a tiny Jaesic plays in the Autumn leaves while wearing a bright red coat, they pose in front of carved pumpkins with their brother, they pose in a yellow coat and red hat with a huge grin (and some missing front teeth), and again in the yellow coat with their dog Rocket.
I look at these photos and truly see a happy kid. Well, maybe not in my dedication photo (ain’t that foreshadowing or what ). But yes, a happy kid. But as I got older, something changed. You can kind of see it in the solo dancer photo, or me with a toy horse on a stick, at the end of this little gallery. The light started to dim from behind my eyes. Chronic pain, misunderstanding, and conformity really took a toll on me.
I’ve been sick with unexplainable physical symptoms since I was 4 years old, compounded by regular colds and flus. I’ve had mono BADLY twice, the worst of it as a freshman in college. When you are not physically well most days of your life, you are not mentally well either. That shit adds up, and depression/anxiety settles in. And this is only a fraction of what changed.
I was bullied, left out, and abandoned for being different more times than I can remember. Not knowing how I was neurodivergent significantly impacted how I developed self-esteem, efficacy, and relationships. I often invested my time in the wrong people (hell, I’m just learning how to not do that now). And I often failed the good relationships I did have because I didn’t have the tools to properly self-regulate and effectively communicate. I learned to people please and spread myself so thin in order to attempt at measuring up to the rest. The result? Repeat burnout, illness, suicidality, and years of abusive relationships. I’ve been trying to define myself by others’ standards and desires instead of looking inward to my core and shedding anything that isn’t ME.
Pictured above: Jaesic is in a dance troupe wearing a tie-dye blue and gold leotard, below they are in a red dress and tights, and to the right they are in a cowboy get-up with a toy horse on a stick named Oreo (it is black and white with a red bridle).
Well, no more. Finally, I see myself for who I am: a being of overflowing love, joy, and light. I no longer am ashamed of my joy or love and how I express it (or, at least most of the time; I’m getting better). I no longer waste my energy on things and people who do not symbiotically impact my life. I pursue my passions and care so deeply for the world, and I have power to make a difference.
My parents raised a little girl. That little girl grew into a severely repressed, depressed, scared young woman who let life and the people in it take advantage of her. Today I know that little girl is still a part of me, and that young woman helped me find how I am so much more now. I get to love her and carry her through to see just how expansive we can be as a fluid creature who never gave up on learning and loving. I know she is looking at me in awe, and maybe a little fear (lol). But how beautiful it is to be able to coalesce all parts of myself after working hard at healing my trauma, so that I can live a truly purposefully authentic life! I am so lucky. I almost didn’t make it. And now I know my life’s purpose is to support others to find themselves and heal too. We all possess the power to make a difference. Each time we realize that, the world has that much a better chance to become even more compassionate and inclusive for us all.
Thank you for being a part of my journey here
Because my brain won’t let go of paranoia:
If you read things like this that I write and take offense because you considered us good friends growing up, these writings are NOT about you. I speak in generalizations about my life because it is easiest when describing the effect OTHER people had on me. I know I’ve had good relationships amongst the bad. But again, those relationships were few and far between, and it’s taken a lot of inner work to find people who will continuously choose me without taking advantage of me. So, know that you are loved, and I very much value whatever kind of relationship we’ve had over the years
I really want to be mad at today. I really do. But I’m learning to radically accept what is, and keep moving forward with love.
To recap:
1) I started my day with a less fruitful (than usual) bonus hour of Lyft, which I woke up early for after falling asleep super late (and I only had restless nightmares during sleep).
2) I then shipped over to my mom’s place to take care of her dog so the poor thing wouldn’t have to be in the crate all day. Except my mom didn’t clear a place at the table like she said she would. I was supposed to work at the house while watching the dog, but I couldn’t because I know from experience you DO NOT MOVE my mother’s things without her being present. The whole table was filled to the brim, just like every countertop in the house 🙃
So I pivot and focus on getting Bella a walk. But I can’t find her normal collar and harness anywhere. I call Mom, and she insists the bag with the things is somewhere around. Can’t find it. I get increasingly flustered and frustrated, all while the damn fire alarm’s dead battery keeps making it chirp at odd intervals.
I try taking the alarm down, but it won’t dislodge from the wall. So there’s noise and mess everywhere, I can’t find the dog’s things, and my body is having a hard time coping with being in the house for a multitude of reasons (yay trauma).
3) BAM meltdown. My body is frozen in the front hall, just standing there, wailing. High pitched wails come out of me that I can’t control, my eyes pouring out tears. It’s like I’m there, rattling inside my meatsuit just behind my eyes, witnessing my body do these things, and I have no attachment to them or ability to step into control. Bella is confused and sits with me and starts “crying” too. Which, thankfully, kind of shocks me into a new awareness and I am able to stop myself from wailing like that. Then she starts sitting closer to me so I can keep my hand on her head/back when she moves around. She didn’t understand, but she was such a sweetheart trying to figure out how to help.
We go for a walk which grounds me a little bit. (With the wrong lead and collar, but I needed to make do.)
4) I finally ship off to my friend’s place to work in his office. I’m taking a course by Kieran Rose (the “Inside Autism Series”), so I can be better educated on the identity I hold. And naturally the first “episode” is all about the history of Autism, which is pretty horrific. I make it about halfway through before I need to drive Lyft again. Feeling the pressure, as I only have until January 6th to catch up on the videos.
4.5) I’m gearing up for a trip to MI over NYE and into January for a few things. I feel the pressure of needing to have things done before I leave, so that’s just exacerbating all of this. And I still need to make rent.
5) I’m finally on time for the bonus hour for once, and get a ride. Instead of him adding a new destination into the app, he has me go to a gas station which adds 10 extra min, as I have a ride waiting in queue. (I’ve learned my lesson, as this has happened a few times now. I don’t care if they tip in cash after, it sucks and I’m done doing it. Especially since it’s a safety risk now that I think about it.)
As I’m going to reposition the app to drive this man to his destination finally, I accidentally swipe “drop off” and lose his trip entirely. It immediately shifts to the next ride, which I had to then cancel. And Lyft says we can go offline for up to 15 min during a bonus streak, but it LIED because when I came back on, I had to start over. The ride after that took me a good 25 min out of the city one way. All this to say, I once again was denied a full opportunity at bonus money. (I need that money because I can only drive so much each day, which is why I structure my schedule around those hours.) Then as I leave the gas station, some other driver decides to use the exit-only lane as an entrance and we almost have a collision.
And the last ride of my day? An older woman started asking me about kids, told me that “they say” (and she knows, because she’s written for John’s Hopkins before🙄) that part of the development of being fully female is when we have children and breastfeed. 🤢🤮 Like it’s somehow my duty, and the only way to be a “woman”. I didn’t bother telling her off, or about who I actually am. Something seemed off with her anyway. But like. WTF? AND she insisted that I tell her my deadname after I explained to her my name now is a recycled version of it.
Y’all I’m exhausted. And I started this post saying that I really want to be mad about all of this, but I can’t. All I can be is tired.
I am learning that we only have so much energy to dedicate to what’s important, and I choose today that what’s important is not being mad at the world for being rude to me (lol). Instead I’m looking at how I’ve managed to have a semi-productive day after a small meltdown (that’s a huge win), and I’m looking at how having older people in power (who are super removed from the world and how it works) is something we need to address as a society. If people want to be in power and serve their communities, they need to actually KNOW who they serve. Obviously this isn’t how things work, because most people in power are there for the power, not for the people. But goddammit can we start doing something about that???
Times are changing. The Future is Queer. We can no longer assume who people are just by looking at them, we can no longer assume that humanity neatly falls into binary categories of gender or neurotype. I’m so over how things are currently. All today’s experience can do is fuel my mission of changing the world, one connection at a time.
I sent that woman away with a smile because I knew I wouldn’t be able to change her way of thinking in a 4 minute drive to her house. I choose compassion over anger.
I choose love for others, even in their misguided knowledge. I choose love for myself, even with all my mistakes and anger. I choose love.
Life and everything in it represents–past the metaphorical–infinite possibilities. As humans, we get to BE those possibilities. If we are infinite possibilities, and we are, through what we focus our attention on, then I choose to shift my attention and seek the paths guided by curiosity, courage, and compassion.
Hello hello! It’s been quite some time, my apologies. Between life being what it is, my demand-avoidance, and insecurity, keeping things active on this site is a challenge. Thanks for still being here!
To combat most of those things, I’ve decided that moving forward, no post is too small to post! (Have I said this before? Probably 😬) So here’s a little one I made earlier on my Facebook page about, well, paralysis from not wanting to do things incorrectly.
I was just talking with a friend about the autistic experience and we both connected over the Can’t Do It Wrong phenomenon:
1. I am often paralyzed when it comes to completing a task—not because I can’t do it, but because I don’t want to do it wrong. So then:
2. I end up asking a ton of questions to clarify what the “right way” is to complete such task which leads to:
3. the people directing me either get annoyed or think I’m incompetent and trust me less.
4. Sometimes I don’t ask because I’m scared of being misjudged or misunderstood so I complete the task in a way I think is most efficient (and usually is most efficient, even compared to the directing person’s method), and I get scolded, or told/treated like I’m a know-it-all, or:
5. I just straight up do it wrong, or don’t do it at all, and still am seen as incompetent and end up being trusted less.
Sometimes I truly don’t understand a task, even if it’s obvious what the steps are. But if people take the time to explain to me what it is I’m supposed to have as an end result with the possible method to get there, in terms I understand, I’m a VERY quick learner, and often excel at the task at hand—often to the point of innovating new processes for that specific task, deepening understanding of it for more than just myself, or expanding the project past its original scope.
6. When asking questions I also have to be SUPER careful how I ask, because often even my questions can be seen as “dumb” because I’m asking about the already obvious steps at times, or I’m perceived as rude or antagonistic/challenging authority due to my phrasing.
I’m not saying this isn’t a normal human experience that probably most people go through at some point in their lives. What I AM saying is that it happens to me at a higher frequency (like neurotic levels), and it can often affect me physiologically to the point of making me feel sick. I also think this part of me plays into my indecisive behavior as well, as I often am paralyzed with indecision and it produces the same physiological response.
Hi friends! I know I haven’t written much lately, but at least it’s for a good reason—I’ve been super busy networking and getting things running! I’ve updated my events tab, but here’s a flyer for this week’s events. I hope to see you there!
Transcription:
This week at Queer Cult: Tuesday, Feb. 8th @ 5:30pm EST is Talks with the Neurodivergent Rebel! This will be on identity-first language, functioning labels, pathology, and grief.
Also on Tuesday, Feb. 8th @ 7:15pm EST is Intersections of the Naked Space. This will be on spirituality and the Magical Playground of the Inner Child. Both events on this Tuesday will be livestreamed to Facebook @thequeercult
On Saturday, Feb. 12th @ 1:30pm EST I have an interview with Aucademy, based in the UK. I will be sharing my autistic and queer self-discovery journey and its intersections of religion, relationships, and grief. This will be livestreamed to Facebook @aucademy.
Image description: two images are divided by a white border. On the left is an image of Jae at their high school graduation. They are wearing a floral, knee length dress with tank-top sleeps. A medal of honor hangs from their neck. They have shoulder length blonde hair, and they are smiling with a blue graduation cap atop their head. The image on the right is of Jae from this past year. They are wearing an opened black vest with no shirt underneath, black dress pants, and a black and silver medallion. Their hair is bleach blonde and cut so it’s shorter on top and shaved on the sides. They hold a smirk on their face and a mug in their right hand that reads: World’s Greatest Me.
cw: mentions su*c*de and abusive relationships
There’s a trend going around where people are posting a picture of themselves from 2012 next to a picture of themselves from this year, 2022. So, I thought it’d be a fun reflection if I did this challenge today, on my birthday.
On the left I see a child in a graduation cap. I see someone who doesn’t know who she is and is tired of faking happy all the time. Sure, I had moments when I was truly happy. But nothing seemed to fit right. Not my clothes, not my body, not my friends, not my education, not my family, nothing. In fact the only things that made sense were music, nature, and animals because I truly didn’t know myself. Things would make sense one moment, and then come crashing down the next. I often wanted to unalive myself, even though I was so excited to start a new adventure off in Michigan for college. But college brought more strife, and I couldn’t make sense of why nothing was easy. Not one thing. Everything took so much effort; I was sick all the time, people abandoned me or stabbed me in the back, work was hell, classes were hell. Again, not saying that there weren’t good moments. But overall I was a lost child in a big, scary world, without much healthy guidance, self-awareness, or boundaries. That girl there had convictions, yes, but was constantly fawning to appease those around her and making foolish decisions. She got stuck in abusive relationship after abusive relationship. She got wrapped up in who people were telling her to be, instead of unapologetically existing in her full authenticity and finding the people who empower her to do just that.
That girl on the left had a lot of self-discovery to do, and a lot of self-compassion to develop. And then 10 years passed us by.
When I look to the right, I see a human who confidently embraces all that they are. I see someone who sees the possibilities life has to offer and isn’t afraid to reach out and receive what the universe is bringing to them. I see someone who knows they are inherently the world’s greatest “them” because they are the only one who can be them. I see someone who values their unique voice, quirks and all, and values when others share theirs. I see someone who knows life is a journey of growth and constant evolution, where it’s okay to make mistakes so long as you stay accountable and choose to do better.
I am grateful for the challenges and hardships I’ve had to endure these past 10 years to get to where I am now. Without them, I wouldn’t be this compassionate for myself and others. I wouldn’t pursue my passions with the fervor that I have now. I wouldn’t be the fierce advocate that I am now. I wouldn’t have the most amazing queer, dance, disabled, kink, polyamorous, and neurodivergent communities that I have now. I wouldn’t be in the healthy, stable, life-giving relationships that I’m in now.
Finally, I know myself. I know that I am transmasc nonbinary, pansexual, polyamorous, autistic, an ADHDer, disabled, and spiritual without religion. Finally I know, accept, and love these things about myself. No, I treasure these things. And finally I know that it is no one’s right or in anyone’s power to take the knowledge of who I am from me, or cover it up with their own toxicity. These past 10 years have taught me that knowing and loving myself is just as important, if not more important, than gracefully receiving and reciprocating love from others.
So here’s to growth, love, and the inclusive, equitable, compassion-first future ahead of us. If the last decade was setting the stage, I am so ready to take to that stage now and play my part in creating this future dream. Thanks for being here for the show and playing your own part too. 💜🌈💜
To everyone who has believed in me and seen me through these last 10 years, thank you, from the bottom of my heart. I truly would not be here in the form that I am now without your patience, compassion, and support. It really does take a village…
I am shamelessly posting my gofundme here for continued growth through community support. Thank you 💜
I’ve written a few times about my nonbinary gender and what it means to me. And I feel like I’ve done a pretty good job at expressing myself. Except it’s still felt a bit inconclusive, like something is perpetually lacking. Then I recently found autigender:
Neurodiverse Tumblr users first coined autigender in 2014, defining it as a gender which can only be understood in the context of being autistic. This definition suggests that some people’s gender experience and knowledge is influenced by or attached to their being autistic.
While autigender can be used as a standalone gender, it’s also used as a qualifier (much like nonbinary). When I say I am autigender nonbinary, I mean I cannot see the world without my autism’s influence, including perceiving and understanding how I am nonbinary. Using “autigender” does not make a person trans, though transness can of course co-occur (as it does with me). Autigender, as I use it, actually expands my understanding of my own transness. It just makes it make more sense.
I’ve never understood gender. Not once. I’ve only played the part and respected others’ expression. Intellectually I understand gender is a spectrum, but it’s hard for me to conceptualize that spectrum in any real meaningful way. It’s not tangible. I just know what feels right and what doesn’t. What some understand boy to be vs. girl does not land with me because we’re all just human. I have said before that I often wish I could just say my gender is “human” and call it a day.
Growing up, I didn’t want to be a boy, nor did I want to not be a girl. I just wanted to be me.
In looking back, it’s fair to say I wanted the social gender of “boy.” I didn’t care about genitalia, but I knew I wanted shorter hair (because long hair for me is sensory hell) and to be treated like “one of the guys.” And then puberty hit. My “weirdness”—I was still learning how to mask my autism effectively—already threatened me with ostracization. Therefore, it became abundantly clear that if I wanted to fit in at all, I needed to commit to the greatest acting challenge I’d ever have to take on: the role of “girl.” I participated in traditionally feminine rituals like doing make-up, wearing heels, or “gossiping,” because I desperately wanted to be included. All of it made me incredibly uncomfortable.
Making friends in the moment isn’t always hard, but keeping them has been a life-long challenge. So I played the part, and failed a lot. Instead of being true to myself, I put on mask after mask, to hide my quirks and to show up in the world as others expected me to be. I lost sight of who I was; even though I was performing gender the “right” way for the most part, I still didn’t succeed at keeping those friends. I have now learned that the more I am authentically me, and loud about it, the more the right people come into my life and stay.
I was forced into this box of femininity that did NOT serve me. I never saw myself like I saw the other girls, and never felt like I belonged. The only time I’ve felt like I’ve belonged was when I got attention from men in college. It was not an intrinsic sense of belonging, but a contentment that came from seeing how I was being treated just like the other girls (hello trauma).
– Me, again from the post Nonbinary and Me
It’s difficult to explain how I didn’t see myself like I saw other girls. It might be more accurate to say that I didn’t see myself as I projected how other girls saw themselves. And it didn’t help that my body didn’t develop in the same ways either (short stature, small chest, more of a square but pudgy middle, thick thighs). It was hard to ever feel beautiful, especially as I never felt like my outer appearance reflected my inner self, though I didn’t know why. No feminine expression ever really felt right. The most beautiful I ever felt was in a messy bun and sweats. In fact, that was when I got complimented the most. I theorize it’s because I was comfortable, and therefore more able to be authentic. It never crossed my mind that I could be something other than a girl, not even when I encountered trans people for the first time and started to learn about how I fit into the LGBTQIA+ community in sexuality (probably because nonbinary wasn’t a part of that world yet in the way that it is now). Every instance of “failure” I experienced at performing my gender directly affected my intrinsic sense of self-worth. Instead of “failing at being a girl” it felt like I was just failing at being human, at being me. And I really couldn’t understand why that was.
A lot of trans people have said and will continue to say, “Oh I’ve always know I wasn’t my AGAB.” These folx usually have stories to tell of how they defied gender stereotypes for that explicit purpose/understanding. For me, I’ve always known I was different neurologically (maybe not in those terms, but I knew I was different and that I couldn’t change). Gender, however, was never questioned because I was never presented another option. There are girls, and boys—that’s it. My version of “girl” growing up was “tomboy.” And after a certain point, “tomboy” was no longer acceptable.
And so, there was a complete disconnect inside of me, and not because I wanted a different gender’s body. I wanted a different body alright, but a different “girl” body so that I could pass as a girl better. All I wanted was to be a perfect daughter and someone a man would find worthy enough to marry. These were the virtues I was taught took precedence, even over my intellect. I could go to school and get a good job, but it really didn’t mean much unless I got married and had kids (as is the plight for women under the outdated rules of patriarchy, especially those who are consumed by the Christian Church as I was then).
In my brain, I’m just human–without qualifiers. I’m just ME.
I’ve said in the past that I feel like all the genders at once, or none at all, or I’ll slide fluidly between many. But that was only an attempt to describe how much gender just doesn’t work in my brain. Those were the words I knew to use to convey how things work for me, as best I could. Nonbinary has worked, but it’s been like wearing a shoe that’s just barely too tight. You can get away with wearing it fine for a while, but after a whole day of walking around, you’re sore and worse for wear. It’s a bit stifling. Suffocating. It’s still a box, even when there is no right or wrong way to be nonbinary (it’s paradoxical because there’s no right or wrong way to be any kind of gender). For this reason I sometimes prefer genderqueer to nonbinary (it conveys more room to move around in for me). I’d rather just not be a part of the system at all though. I’d rather be a constellation of what makes up ME, where I choose the things I do and do not like and exist as a human on this earth without being forced into labels or skewed understanding. Adding “autigender” to my nonbinary label, then, allows me that liberation from the whole spectrum even as I operate within it.
I do believe my neurology has played the biggest role in not only trapping me into “womanhood” for so long, but also in my liberation from it. I was a girl for so long because my environment told me I was. Many autists are very literal people, myself included. I just accepted I was a girl, and a poor one at that. I couldn’t truly grasp gender before, but now looking through the lens of my autism, everything just makes sense. I needed new information and a safe space to try other identities on, and I’m so grateful that’s what I found myself in just a few years ago, and continue to find. Give me the space and tools to be creative, and I will create! And man did I ever create a masterpiece, one that is wholly reflective of who I am and not who I was projected to be.
Exploring gender, sexuality, or neurodiversity? Remember, everything is at your own pace. And I can help! If you’d like to talk with someone about what you’re going through, I offer consulting services on a sliding scale. Please don’t hesitate to reach out through the contact tab on the main menu. 🥰
And soon I will be offering life coaching! Stay tuned!
Change isn’t easy for anyone. From a small change in daily routine to moving across the country, us humans often experience anxiety when dealing with the unfamiliar. But let me ask you this: do you have different levels of anxiety reflective of how “small” or “big” the change is?
If you’re neurotypical, I would wager that your anxiety exists on a linear spectrum, one that goes from low to high in reflection of how small or big a change is to you.
As an autistic person, I unfortunately do not have the opportunity to have the same anxiety spectrum. It’s like my brain has crossed a few too many wires so that nearly ALL change, no matter how “small” something may seem, is red flagged and sets things in motion for
Panic Mode™
Now, every autistic person experiences this differently, just as neurotypicals are not one and the same. But for me, once something in my brain is red flagged, there’s very little I can do to stop the process. The only thing I can do is focus on the coping strategies I’ll need to keep myself from melting down. (Or I’d find a place to release that energy and cry it out.)
I was motivated to write this post because of my riding lesson yesterday. It’s a very good example of this red flag model, so let’s saddle up and giddy-up.
Paint horses—my favorite. I guess I like my horses looking like cows lol
Just Horsin’ Around
Horses have been one of my passions and special interests since I was very young. Honestly for a big chunk of my early childhood, they’re all I thought about. I was in and out of lessons, horse camps, 4-H, and casual riding at my mom’s friend’s barn through to early high school. Once it was clear we couldn’t afford a horse of my own, I started to squash down my undying love for these majestic beasts until that part of my personality was safely tucked away. Though I recognize it was a privilege to even have the experiences I did have, it hurt too much to not be fully immersed in horses, and I needed to set that part of me aside. Until this past February, I hadn’t ridden a horse (aside from a trail ride or two) or been involved in barn life in over a decade.
When we started up lessons, the barn was pretty inactive because of the cold. Most boarders only came to feed and groom, and even when there were people there riding, they never rode in the arena with me. I rode the same horse, Star, for the first month and a half.
And then I was switched to Penny without warning. It took me half the lesson to breathe through the change, but I managed to stay calm enough to still get something out of my lesson. It also helped to put things in perspective that I won’t be riding the same horse for the rest of my life.
That brings us to this past week, a month of riding Penny later. I was switched back to Star for my make-up lesson on Monday. Then yesterday, Wednesday, I was back with Penny. After a stressful drive through our Spring Snow to find the new switch, I was already feeling uneasy. But then I also learned that there would be another person riding in the ring with us. And on top of that, my instructor was on a horse too, which has only been the case maybe 2 times since I started. All of these changes stacked on top of each other, on top of riding in the cold (even slight dips in temperature affect my body), in an indoor arena. I was left swimming in fear and upset while I was trying to control a 1000 pound beast underneath me, one that was super sensitive to the tension in my body and was behaving in a way that reflected it. Did I mention I was riding a ONE THOUSAND POUND BEAST?
Anxiety Playing Rough
My instructor tried to talk me through what she didn’t entirely understand, but talking just made things worse. I committed to my Yes Man Mask (where I shut down and only respond with “yes” when appropriate) to get through the rest of the lesson.
“If you’re not uncomfortable, then you’re not growing!”
– my well-meaning instructor (seriously, her heart is so big and loving)
While that saying is not altogether wrong when it comes to mental hurtles, it was not as appropriate for the situation I was in. When Panic Mode™ sets in, the anxiety I experience may start mentally, but the physical manifestation is what causes the most issue. It starts by me feeling vaguely overwhelmed, and then a vibrating sensation takes over my body. My heartrate speeds up and pounds in my ears. Lights are suddenly too bright, noises are too loud, and nausea sets in. And whether or not I’m in an enclosed space, claustrophobia gets added in too, so it’s just that much worse when I am in enclosed spaces. I feel as if I can’t really breathe. Of course then it becomes more mental because my brain is freaking out about what my body is doing. It’s a nasty catch 22. If I am unable to mediate this experience, it generally turns into a full blown meltdown, where I lose control of motor functions, I hysterically sob, yell, and hyperventilate, and often stress my body so much that I have bad muscle spasms. These meltdowns always make me physically ill after, often for days.
“Don’t sell yourself short. Focus on how you DID get through to practice your skills. You proved to yourself that you can do it!”
-paraphrasing my instructor from a chat we had after my lesson
Yeah, I “did it” because I’ve been “doing it” my whole life. I played the mind games I had to in order to get through the lesson, but the physical embodiment of my anxiety didn’t just go away. It never does when things like this happen.
I pushed through. I pretended I wasn’t in meltdown mode, ignored my physical symptoms, and managed to work on my posting trot. I breathed through my shaking and heart pounding and really focused on grounding myself to the present moment. I didn’t enjoy my lesson at all, but I coped. Because until I master mindfulness, that’s all I can do with this brain wiring. I cannot overcome, but I can cope. My body was still shaking when I got to my car and I still needed to cry. At least now I can cope ahead for future lessons because I’ve learned that this is just how it is at the barn.
It’s funny, I actually have a better time with bigger changes, like moving, because I have time to cope ahead. I have time to develop plans A through Z, and generally can drum up enthusiasm for exploring new opportunities. Little shifts in daily routine, however, cannot be planned for, and thus are more painful to accommodate for and cope with.
I get that this is just how life is. I get that everybody goes through their own version of fear, anger, confusion, and anxiety in relation to change.
What I wish more people understood, though, is how different people can have visceral physical symptoms to changes that may seem insignificant. While my anxiety does have some range from less to more, my 7 is someone else’s 3 on a 10 point scale. The changes that usually cause people to feel inconvenienced or annoyed are the changes that send me into overdrive. After years of melt downs and feeling sick, I’ve learned how to mask this reaction and continue on as if nothing is happening (to the nonobservant eye). But it’s still happening. Admittedly my coping has gotten better, but it’s still present enough to cause me suffering. I hate feeling like an unintentional Diva. I hate feeling like a burden. I hate having to fake that I’m okay a lot of the time. It often makes me wish I had a different brain.
But that mentality is not productive. This is the brain that I have, and I need to learn to work with it respectfully.
Ableism At Play
It’s one thing to be triggered by a loud noise because of a hyper-sensitive nervous system (happens all the time). It’s a completely different game when what triggers you is “invisible” overstimulation. I put invisible in quotes because I am still training myself to see my triggers for what they are and not have an ableist perspective. An abelist perspective here would look like me seeing all the “tiny changes” as things that all people have to deal with and to just
Suck It Up™
This would then cause me to later penalize myself for having/wanting to have a meltdown “over nothing.” Self-degradation and I are old friends. 🙃
All this to say: If you see someone having a hard time, and it crosses your mind that they might be having a tantrum, ask yourself what you’re not seeing.
Hold space for that person and show compassion for the pain they’re experiencing. Often what people see as tantrums, are actually meltdowns viewed through an ableist lens. Offer phrases like, “I see you,” or, “You are safe here,” or, “I am here with you.” Ask what’s going on and validate their experience.
If their tone does not convey respect, please be mindful that experiencing a meltdown is involuntary, and vocal tone is hard to control because that requires masking (meltdowns usually take away a person’s ability to mask). If they cannot answer you, just stay with them until they feel they can talk (or ask if they want you to stay around, which hopefully a nod for yes or no can be used).
Ask them what they need to feel best supported. And definitely do not doanything without their consent, including a comforting touch.
If you are feeling deeply disrespected and you can no longer endure it, see to it that the person in crisis is safe, and distance yourself. Come back to them when they are not in crisis and try to talk it out. It is important for both people in any kind of relationship to have boundaries and have those boundaries respected.
If you can, offer aftercare in the form of getting them to a safe, cozy environment. Offer things that are soothing for that individual (maybe a favorite texture, or food) and definitely offer water. Meltdowns are an incredible amount of stress on the body and it’s important to replenish.
If you are a complete stranger or just an acquaintance, do not stare or make a big fuss. You can help by creating a safe environment around them as I already talked about. And if you’re truly uncomfortable, see to it that someone they know can stay around and then excuse yourself.
How We Learn
I chose to make this experience a learning opportunity, but not everyone is able or is willing to do that. Heck, I’m not even able or willing to do that each time this happens. And that’s okay. The point is to have compassion for each other and for ourselves when we face these obstacles, which is why I wrote this article.
I am proud of myself for getting through the lesson while holding space for my discomfort. I am proud of myself for calmly talking with my instructor after, instead of yelling or running away, and explaining why all this happened. I am proud of myself for not spiraling apart when I got home, questioning every interaction and doubting that all is well. And I am proud of myself for resolving that I still want to continue to take lessons, even with more possibility for change in the future.
I am also proud of myself for recognizing how I needed a self-care day after this happened. I will continue to love my mind, body, and soul, and to live according to my truth. I will continue to work on coping and practicing mindfulness. Because it’s true what “they” say:
Change is the only constant in life.
All we can do is love ourselves through each change, and do the same for others.
