Unmasking Autism Diary #17: 3 Ways Autistic People Handle a Brewing Meltdown

Read now (6 mins) | Emotional regulation: from inside Angela's Autistic mind

September 6, 2023

Dear Diary,

In this episode of, ‘never have I ever,’ I wore sneakers to a wedding.

Empowered by so many of the gorgeous, inspiring, young women of Gen Z wearing sneakers to their proms, I made the bold, very non-Gen X decision to wear sneakers to a wedding! Just wild.

It was at an outdoor wedding and I was extremely happy to go to it.  I’ve been anxiously waiting for it all year. I loved my outfit, my hair, and my bold shoe choice. I felt prepared and unstoppable. This was going to be the night of my life.

But…I was not unstoppable. In fact, I came very close to an Autistic meltdown and almost had to leave early.

I noticed early on, there was one place that the fabric of my dress kept touching me that was over stimulating, but I felt confident I could push through.

It was a really hot day and it was very bright. I noticed my tongue was numb and my eyes were struggling to focus and my peripheral vision was reduced. I was seeing everything through a tunnel. The hotter I got, the louder the ringing in my ears sounded. My breathing was shallow and I kept trying to shake it off and be present, but I could feel the physical tension building.

Luckily, the ceremony itself was one of the smartest, funniest, most entertaining weddings I’d ever seen.  It included interpretive dance, lots of references to effing the patriarchy, and an officiant who was born to be a stand up comedian. I was hanging in there. 

Autistic people talk a lot about how to live in a world that was not designed for us. We aren’t the only people that have to deal with this of course. The obvious example here is people who have limited mobility or use wheelchairs have to navigate a world made for bodies that walk because the majority of people can walk. The majority of people take in sensory information differently than neurodivergent people which includes me, as an Autistic.

The sensory overload of an outdoor wedding on a hot day was working against me.

Having “fun” felt as easy as climbing to the top of a 16th century castle with no elevator or ramps, while in a wheelchair.

Theoretically doable for a few outliers, but harder for me and not possible without help.

I knew I was heading for a meltdown, and I needed to get myself some accommodations. I found some shade and gave myself permission to stim on my phone. I knew it looked rude, but a meltdown would be worse.

This pushed my sensory overload from a 9 out of 10 back down to a 7. I started to re-engage, thinking I’d be fine. Met some nice people. Had a great conversation and was so happy to be there…But, I could feel the ringing in my ears and the numbness in my tongue growing as we talked. I was distracted, but suddenly back at a sensory overload of 9! I needed an exit strategy or I was going to do something socially inappropriate.

The bathroom would be my escape. I went inside to the bathrooms and there was a couch. I wanted to be outside with the crowds and food, but I sat on the couch and played a game on my phone trying to get my physical systems back into homeostasis. It felt like it was taking forever. I knew the fastest solution would be to sleep, but I also knew that would look weird, or—at the very least—like I had gotten drunk very early in the wedding.

I started thinking about how I handled situations like this in the past, when I was undiagnosed and when I was masking.

Before I was diagnosed—which was until I was almost 40—I would have just had the meltdown. It would have looked like I was a difficult child having a tantrum, or a narcissistic adult stealing focus from the brides on their day. It might have manifested as: a disproportionate reaction to a question, picking a fight with a server, or crying or yelling at the people at my table.

Once I was diagnosed, it got a little better because I would recognize that it was sensory overload and usually avoid inappropriate lash outs. (Usually, not always.)

Getting a diagnosis helped me to see situations where a meltdown was about to occur and do something about it.

My first 10 years of being diagnosed, I followed the readily available information out there for Autistics—most of it developed by well-meaning neurotypicals who want to teach us skills to fit into society. In other words, they are the ones who teach us how to walk up the 525 narrow stairs of a 16th century castle using our arms, even if our legs can’t support our frame walking.

The model teaches self sufficiency and self-discipline. Try harder. Be better. Rise above.

Think of the applause waiting for the paralyzed person who fights their way to the top of hundreds of stairs! It’s not possible, or highly unlikely, or impractical for almost every other paraplegic, but we are inspired and we KNOW such miracles are possible with the right amount of grit and determination when one outlier does it!

But, is this a reasonable expectation, really? And what is the cost of this ‘inspiration-porn’ to the other people in wheelchairs who just want an elevator installed so they can catch the view from the parapet too?

In the first 10 years of my diagnosis, I wanted to be the inspiration porn. I wanted to be the 1 in a million Autistics to, “beat the symptoms of my disease.” I wanted to have the grit and determination of a wheelchair user choosing to use crutches and walk, even if it was painful, inefficient, and knocked them out for days.

I wanted to be better…To get better. Always guided/haunted by, “What’s everyone else doing?” Do that! In this case, for the wedding, that would have included:

1. Wear high heels (in my masking days I never would have worn sneakers—so amp the sensory overload up).

2. Get an alcoholic drink because that’s what everyone else is doing.

3. Talk to as many people as you can ignoring any physical symptoms.

4. Smile and laugh and take pictures even if you want to nap.

5. Be polite. Stick to small talk. No religion or politics. Talk about the weather and traffic. “Which route did you take to get here?”

For a decade, I would observe the neurotypicals and copy them. I didn’t even know how to identify what I wanted or needed other than to copy them.

Often, I didn’t have a meltdown. I bypassed it, but the cost of the bypassing would take a different sort of toll.

The energy of that meltdown was stored up somewhere, and would be converted into a giant, multi-year Autistic burnout which was the culmination all of the bypassed meltdowns happening at once and being expressed for much longer and more intensely.

Now, I was living unmasked. I was choosing to feel each of these sensations: I felt trapped, overwhelmed, embarrassed. I was failing at small talk, claustrophobic, sensory-blasted, all the emotions and none of them, numb and angry and happy and frustrated and nothing I could express. I was nauseated, hot, and exhausted. I wasn’t bypassing any of it—I was acknowledging it all.

And so, I went inside and sat on the couch for thirty minutes to re-regulate.

And this time, when I walked back outside, I was fine! I was cooler and my tongue wasn’t numb so I could eat the delicious food. I got a cold glass of water and found some fabulous strangers to chat with. I danced. I took pictures. I told the brides how much I loved them (it’s true). I connected with old friends, snuggled an adorable baby, and had a meaningful connection with a family I have heard about for years that I really wanted to get to know.

I talked politics! And religion! (Shhh don’t tell). And after a thirty-five-year special interest in the apartheid era of South African history, I heard some stories of what it was like there in the 80s and early 90s that I’d never heard or read before.

I ate amazing food—that short rib! Mwah! Chef’s kiss! I played with kids, sang 90s grunge at the top of my lungs, and enjoyed the wedding just like I hoped I would. Unmasked. Culturally Autistic, but making it here in a Neurotypical world without falling for the lie that Autistic people who CAN (appear to) act like the neuromajority, need to be broken into submission to force themselves to act the part.

When someone says, “You don’t look Autistic,” to me, what they mean is: “You look like you would be better at acting ‘normal’ than someone with support needs I can identify with my uneducated eye like an inability to speak or stop stimming.” I get that. “You don’t look Autistic,” means that in your opinion, I should shut up and act like you, even if it causes suffering needlessly.

This is why Autistics who can mask, need to unmask if it’s safe for them to do so. Because making our needs visible makes the world safer, better, more accommodating, and less hostile for all Autistics.

I am grateful, I was able to have a fully unmasked, spectacular time at one of the best weddings of my life. And I was especially grateful to do it all in sneakers! Thanks to the women of Gen Z for empowering comfort!

***

The Dear Diary Project is a public journaling project where I’m publicly sharing my diary entries as part of my annual goals. No harm is intended by these posts. My goal is to gain clarity for myself and hopefully help others, especially autistic adults, who are trying to make sense of the communications challenges we face.

“Masking is a common coping mechanism in which Autistic people hide their identifiably Autistic traits in order to fit in with societal norms, adopting a superficial personality at the expense of their mental health. This can include suppressing harmless stims, papering over communication challenges by presenting as unassuming and mild-mannered, and forcing themselves into situations that cause severe anxiety, all so they aren’t seen as needy or “odd.”
—Unmasking Autism, Dr. Devon Price

*Background note: Most people only have a vague (often, highly stereotyped) version of autism in their minds and believe that autistic children need (traumatic) ABA therapy to "overcome" their disability and appear "normal."  After receiving an autism diagnosis in her thirties, Dr. Angela Lauria realized that she too had been mostly unaware of what it means to be Autistic.  Like so many people, she started her journey by first gathering information and resources from the omnipresent (and problematic) Autism Speaks, but eventually moved away from the 'autism community' in favor of the 'Autistic community,' where she found kinship with other Autistic individuals and learned to let go of pathologizing language like 'autism spectrum disorder' and 'Asperger's Syndrome.'  This autism blog (and her autism podcast, "The Autistic Culture Podcast") is meant to share her lived-experience insights to support others on a similar journey of diagnosis, understanding, and community. Embrace Autism--differences are not deficits.