CW: anxiety, ableism

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.

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 do anything 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.