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.
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!
It’s time we stop pathologizing different neurotypes and get to the root of the problem: we all need individualized care.
Instead of putting the onus of “functionality” on the individual, we need to really evaluate how the systems we have in place (this capitalist, white supremacist, cisheteropatriarchy) put us all at disadvantages depending on the identities we hold. No two autistic people are the same, just as no two neurotypicals are the same.
Let’s start a conversation about what is actually needed: comprehensive universal healthcare and social infrastructure that evaluates the individual’s needs and accommodates appropriately. There is no such thing as a “high” or “low” functioning human. There are only humans who need a more accommodating/understanding/patient environment. Whatever “level” humans operate at, makes them just that—human. Functioning labels serve no one but those who feel the need to “organize” for hierarchy’s sake.
I consider myself disabled due to the combination of my chronic disease and neurodivergence (autism w/ADHD). This means that even though you’ll see me dancing and often “functioning” at the expected level in most social situations, there are days where I can barely get out of bed, let alone get to the store or talk with people in any meaningful way. Social and sensory triggers play a HUGE role in my “functionality,” on top of having a body that fights itself on a daily basis.
Autism is not a condition or disorder.
But it CAN be a disability when needs aren’t met. When the metric for disability is based in how an individual is able to “perform” socially, or independently, suddenly a whole lot of people are either “low functioning” or are able to mask super well which causes its own problems. It’s degrading. We are all worthy of love, dignity, and respect.
When it comes to disabilities that can only be accommodated for so far (from executive functioning issues to having seizures), we have the opportunity to see disability as a non-linear spectrum, as we see autism. Certain disabilities will put a person at a disadvantage compared to others in whatever environment. This is why it’s even more crucial that we have individualized care. And when accommodating for one disability impedes someone else with a different disability, a compromise must be reached.
We are humans of great capacity!
We literally have ALL the power to make our society inclusive and accommodating for *everyone*. We accommodate for everything we can, we do better when we learn better, and we interact with each other with dignity and respect. It all comes down to compassionate communication and individual needs (which is not to say similar needs can’t be serviced collectively, just that systems need to operate on a more personal level than they do now).
So why don’t we make this shift happen? Because the way things are now keep people poor and dependent and allows those in power to stay in power by exploiting others. We can start dismantling these awful structures by changing our language to be more compassionate and inclusive. Will you join me?
According to the levels in the DSM-5, high functioning people use spoken language to communicate, are more likely to manage the expectations of an academic setting, and more likely to be aware of social conventions. Basically, they are able to pass as “normal” or “typical” in most areas of life.
Low functioning people are described to look and sound different from their typical peers with their disability being more visually and orally obvious, and are less likely to engage in typical classes or activities.
Why is this a problem?
The “high functioning” or “low functioning” dichotomy came from eugenics (a movement aimed at selectively breeding desirable traits and out-breeding neurodiverse individuals [among other marginalized identities]). It is based off a person’s ability to produce capitalistic value or not which is inherently wrong.
The distinctions between low and high functioning individuals is artificial and not absolute. This is because autistic people behave differently in different situations and every individual has a range of strengths and challenges.
For example, a “high functioning” person who appears “normal” (or even exceptional) in a classroom may find it impossible to function at a party or concert. Meanwhile, a “low functioning” person who can’t use spoken language to communicate may be more than capable to lead an online conversation.
Why is this a problem?
Autistic people labelled as “high functioning” often receive less care and support from communities, peers, and medical professionals because they are deemed capable of functioning “normally” in society without assistance. This becomes an issue once they are no longer capable of functioning “normally” due to sensory overload or any other triggers. This idea also promotes the harmful and excessive use of “masking” where autistic individuals prevent themselves from stimming or a meltdown to maintain the expectations of a “high functioning” person.
On the other hand, autistic people labelled as “low functioning” are deemed of less value than their “high functioning” and neurotypical peers. They are often excluded and isolated from social circles, are underpaid, and denied workplace rights and healthcare rights.
What should we say instead of “high” and “low” functioning?
Focusing on people’s functioning gets us nowhere. Autistic people’s needs and experiences are too varied to fit into any dichotomy, no matter what you call it. The conversation should be focused on the amount of access to care rather than the amount they “function.” Obviously some people need more care and different forms of care than others but labelling autistic people on “high” and “low” functioning is the opposite of supportive.
Simply approach each autistic individual with an open mind and kind heart without forcing us into restrictive and demeaning boxes.
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
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.
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.