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  • Robin Kastengren

40 Years of Masking Autism

Why did it take so long to arrive at autism?

Good question, and for me, it all comes down to masking. I’ve been masking for as long as I can remember. I’ve talked about it with people and described how I switch up “my me” depending on where I’m going or what I'm doing.


I have a Work Me, a Public Me, and a Party Me. I have a Phone Voice and a Work Vocabulary. I have a Shit, I Have to Defend the Kids and Pretend I’m Brave persona. I have Business Me, Strangers Me. There's all the different ways I carry myself to hide pain. Most people who know me well wouldn’t argue with these varieties of myself or that I switch them up when I need to.

It’s not sinister and it’s not about hiding all my weirdness; it’s more about avoiding draining interactions so that I can do whatever I'm leaving the house for in the first place. If I don't properly execute whichever Outside Me is necessary for the day, the looks and the questions are truly relentless and the day will always include at least one person laughing at me when I don't think it's funny.

I did not know where the mask ended and where I began, and that lack of knowledge was my most closely guarded secret. I assumed everyone else knew where they began, but trying to find where I began had only led to disaster for me.


Trauma-Informed Masking

I learned how to hide who I was from living with my dad. He teased all of us relentlessly for any tiny little thread he could get his fingers on. If you held your head a funny way when you were thinking or moved your body a little too much when you walked. If your eyes were not brown. If your hair was not brown. If you sang out loud like a stupid bird, like your stupid name. I guess he viewed his autistic masking as simply The Correct Way to Live, and the only way he knew how to make us behave like that was to torment us as his mother did to him.

I mean, I certainly vowed not to be anything like my parents when I was younger, and most of the people who read these things were there swearing to god they weren’t going to be their parents right along with me, but I guess it takes all kinds of people.


The worst thing I could ever do was demonstrate what I was thinking at any time. My father would not allow that kind of disrespect, and the price I paid ranged from lectures that were hours long about how fucking stupid I was or the silent treatment for weeks.

We all prayed for the second one. Well, the truth is that we all wished he would punch us in the face once, really hard, because at least it would be over.

But I digress.

I most definitely tried to tell anyone who would listen to me what it was like to be me. I knew it wasn’t like everyone else, and I was born with the compulsion to explain myself when I feel misunderstood. (Right? I have concurrent websites right now depending on my mood lol)

The problem is that talking about what it is like to be me scares everyone. After talking about what it is like to be me, the things that happen to me range from losing friends and being ejected from groups to being prescribed medication that makes me feel dead to losing my autonomy and dignity entirely.


It would be weird if I didn’t stop trying to tell people. It would be strange if I didn’t learn how to mask who I am and present a version of myself that would preserve whatever I could hold on to.


So, What Made the Difference?

A visit with a psychiatrist earlier this year who asked more questions about my medical history than my mental health history. Before her, I had seen three other doctors, each of whom left the practice before I had a second or third visit. There were always dozens of new doctors for me to choose from, but any doctor who had been around for more than a year or two had a months-long wait time.


This doctor booked me for a two-hour appointment two days after our first so she could read over all my medical records. Her first words were about how another round of bipolar treatment would be extremely dangerous for me. She wanted to pursue neurodivergence testing for me this summer, autism in particular, but she didn’t want to rule out ADHD or other spectrum disorders.

Why wait? Well, my whole life was falling apart around me, and she thought it might not be the best time. I told her all of the basics: marriage felt like it was falling apart for no apparent reason, my son failing 6th grade even though he’s brilliant, my beautiful daughter wilting and drowning, the whole thing with my sister, and then I told her a little bit of what it’s like to be me and walk through a week of those things.


I didn’t know much about neurodiversity in adults before this appointment, so she sent me a couple of links to read over and see if I agreed with her about pursuing a diagnosis.


She also sent links about CPTSD, which can look like autism or ADHD in adults. Some people end up with CPTSD from life, but almost all undiagnosed neurodivergent adults have CPTSD from living a masked life and from living among mean, abusive allistic people all our lives.


Meltdown.

The plan was to get the kids through the school year and hang tight until summer, using all the self-care we could find on the planet. It was already March, and I could endure anything, right?


I didn’t share all the details with my husband then. We were barely speaking and keeping our distance from each other as best we could. Not because we hated each other, but because we couldn’t figure out what was wrong. We were both desperate to stay married, but we only seemed to set each other on fire every time we were together, and it was killing all five of us.


I thought it was important that he knew this doc saw some hope for me this summer, and that means we still had hope for us. But first we have to get these kids to summer and we have always been able to take care of the kids together no matter what was going on. Set us aside for a while, stay in our corners, and get these kids to summer.


Two weeks before my brain meltdown began, my psychiatrist said she was moving to another state, and due to the rules of insurance and capitalism, I could no longer be her patient. However, a long line of 32-year-old boys with fresh degrees would be happy to take over my treatment.

My husband and I talk a lot now. All day, every day. Just like we used to. Now that we know what’s wrong, we can fix it. I mean, the answer is still me. It’s me that needs to do the work. Again. And I’m so fucking tired of doing the work.

Still, on days like today, I’m crying into the void of the internet while the kids are sleeping so I can get it all out of here before they wake up. That way, when they grow up, they don’t have to cry about their mama every morning before facing their own kids.


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