Unmasking Autism Diary #9: I Kept Going When I Couldn't

Read now (6 mins) | Sensory needs: from inside Angela's Autistic mind

April 11, 2023

Dear Diary,

I am embarrassed that I get so car sick. I hate asking to sit in the front. I hate that when I get out of the car it’s going to take me an hour to feel better and that an hour after that I’ll need to go to the bathroom for 40 minutes. 

I secretly stash Dramamine, ginger chews, and pressurized wrist bands into my purse to try and hold it back, because once it starts, hours are gone. 

I hate that when a server accidentally drops a tray on the other side of a restaurant, my meal is ruined. I’m mortified that I will exclaim loudly at the crash embarrassing everyone at the table. I hate how my skin and blood feel jangly and that my vision narrows to a pin hole. I hate that logic doesn’t work. 

The tone in my voice as I yell at whoever is near me, “I’m sorry. It’s me! I over react to loud noise and you are going to have to deal with it,” is like nails on a chalk board to my own ear.

The look of disgust and “just get it together” on their face is mortifying. I fucking hate that look. 

I walk so slow—especially when the ground is uneven—because I hate falling so much. I have to stop everything and focus on walking or I will fall and not only does that hurt and sometimes cause weeks of inconvenience, but I literally cannot take dozens of people asking me if I’m okay when I’m laying face down on the sidewalk crying. (FYI I’m zero percent okay and you stopping and staring is making it worse.)

Being asked if I’m okay when I’m crying and KNOWING beyond a shadow of a doubt that I am the asshole if I don’t say, “Yes,” is possibly my least favorite part of the neuromajority’s tyranny. 

My real answer: “NO, I AM NOT OKAY. THAT’S OBVIOUS ISN’T IT? ARE YOU UNOBSERVANT OR JUST BEING AN ASSHOLE TO ME RIGHT NOW WHEN SHIT IS REALLY BAD? WAY TO KICK SOMEONE WHEN THEY ARE DOWN.”

I do not say this of course but my face and body betray me…Because I do say it, even though I don’t. So I might as well. 

I hate falling so much. I hate being car sick. I hate my body’s physical reaction to loud sounds. 

Mostly, what I hate though, is how it seems to people in the neuromajority that I am just exaggerating, being dramatic, being histrionic, or worse, being narcissistic (the most common label people who no nothing about autism—or NPD—insist that I am). I’m awash in shame even writing this. 

I know you think I can control these reactions. I know it because you have told me. You have reported me to the teacher, the principal, the boss, HR…

I know it because you stopped calling, you don’t reply to my texts, you don’t comment on my FB posts (but I see you comment on everyone else’s), or you asked if we could just hang out alone without anyone knowing. 

I know it because people tell me what you say about me behind my back. All while you are talking about authenticity and accepting people for who they are. Just not me. I get it. 

What if you just asked me what it was like to be autistic and then believed me? 

For decades I worked hard to combat these things. I would fall asleep in the car so I wouldn’t get car sick. Most people thought I had narcolepsy which was more acceptable than autism I guess. 

I would apologize for my reaction to loud noises and forced myself to recover as quickly as possible pretending my nervous system was not wildly disregulated. 

I’d make jokes about falling and pretend it wasn’t a big deal while I was actually dying inside. 

I lived in a permanent state of massive emotional disregulation and I kept going. ‘Keep calm and carry on.’ That’s what good little soldiers do. And I COULD do it.

So I had to. 

I assumed that this is what everyone else was doing too. That a broken glass in the kitchen lead to two days of stress poop for everyone. That no one wants to eat after a long car ride but they do it anyway. That the right answer to, “Are you okay?” is always yes with a smile and thank you for asking. 

When I decided to stop masking, a lot changed. When the plates crash in a restaurant now, I just let myself react and it’s usually much louder than before. I let people be embarrassed. I excuse myself from the table if I can or put on headphones and a song to help me re-regulate. I stop talking. I don’t push through. I focus on getting re-regulated.

If I’m car sick, I just don’t eat. I might go home. I might sit somewhere quiet for an hour. I might be late. I don’t keep going when I’m disregulated for any longer than I have to. 

I walk really slow and I usually wear flats now. I don’t try to keep up or be fashionable. I rest. A lot. If I’m feeling physically shaky I don’t keep going. I get more rides. 

Unmasking for me isn’t just about telling people I’m autistic and listening to their, “Everyone’s a little autistic,” and, “You don’t look autistic,” bullshit. Unmasking is giving myself permission to stay emotionally regulated as much as I can even if it’s inconvenient or makes people think shitty things about me. 

Putting my emotional regulation first changed everything about my business:

• I work exclusively with people from traditionally marginalized groups. 

• I only work on books I believe in.

• I work deeply, directly, and intimately with every client. 

• My team is smaller (easier to stay regulated). 

• I’m not trying to grow faster than my nervous system can handle. 

Putting my emotional regulation first changed everything about my relationships:

• I gave up relationships where I couldn’t be present and stay regulated a majority of the time. 

• I go out and travel a lot less.

• When I go out or travel I rarely post on social media. (Just back from 2+ weeks in Italy for instance). Staying regulated when I’m out of my systems and routines requires more energy and nothing is left for social media. 

• New friends tend to be a part of the neurominority. 

• While I don’t need to talk about it all the time, I refuse to continue to perpetuate the underlying requirement for our relationship is that I just get on with our relationship and pretend that I don’t need accommodations for my autism. I will self-advocate to get my needs met. 

And so here I am. Watching another sunrise and journaling to the sounds of chirping fisher-birds. This is Autism Acceptance. 

This week I’m recording some more episodes of The Autistic Culture podcast. All these sensory differences are a part of why our heritage is so rich. You want our innovation, our creativity, our unique perspective? Honor the source. When we view Autism through the social model we can see the resilience of Autistic people for 100,000 years. 

From Penny Spikins’ The Stone Age Origins of Autism:

“After around 100,000 years ago we begin to relatively suddenly see the emergence of ‘inventions’ such as the spear thrower, multi-component harpoon and tiny microlithic stone tools which appear to have been essential for the colonisation of previously unoccupied regions such as the far north.” 

In the last three episodes of TACP we talk about how and why trains are a long fascination of autistic people and we celebrate Bruno, a new Autistic train car in the Thomas the Tank Engine series. We talk about the dimensions of Autistic culture using the Hofstede model of culture, and we take stock of light and dark legacy of the contributions of Temple Grandin, one of the best known autistic people. 

If you missed any of these episodes, you can catch up here on Substack, or on Apple Podcasts.

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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 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.