My life with Autism & ADHD

Month: December 2022

How does masking work for Autism & ADHD?

I started to write a completely different blog post than this one… But I quickly realized that a solid understanding of “masking” was needed to understand the content. 

So let’s take a step back, and define masking. 

What is masking? It’s a number of different behaviors that (for lack of better terminology) “higher-functioning” people with Autism or ADHD do to blend in and appear “normal”. Masking is metaphorically speaking when those with Autism or ADHD wear a mask over their neurodivergent behaviors. They cover up their true personality to conform to what society expects from them.

I’ve been told that I am an expert masker. How do I mask? I force myself to make eye contact, I laugh often to cover my social anxiety, I mimic emotions, and I nod incessantly to show I’m listening. 

These are just a few pieces of my mask that I’ve identified. Some of these behaviors are difficult for me to perform, while others (like the nodding) simply annoy me. 

I’m still disentangling myself from my mask and determining what is “Kaïa” and what is my mask. I’ve been unknowingly masking for so long that I cannot easily flip a switch and turn off my mask. So the process of unmasking is confusing, difficult, and quite honestly an uncomfortable experience.

Why is it unpleasant to remove my mask? My mask makes me feel safe. 

But masking is a double edged sword. Not to mention that masking shouldn’t even be necessary. And for something unnecessary, masking takes a surprising amount of effort. In fact, the energy vacuum created by my own masking is in part what led to my diagnosis. So thank you, I guess?

For months, I found myself stuck on the couch on my days off from work. Sometimes I would be trapped there for a solid 2 hours. Those of you who know me well, know that I am a driven individual who likes to always be busy. But as much as I mentally wanted to go get my to-do list done on those couch days, and otherwise enjoy my weekend, I physically could not get my legs to move. It was extremely frustrating because I felt like I was wasting my time. I felt like I was no longer in control of my own body… 

I’ve since learned that a large part of why I found myself perpetually imprisoned by my couch was because I had used up too much of my finite energy masking. In fact, I had used up SO much energy that I had used more energy than I literally had available. Sure, I went to sleep every night for a healthy 8 hours. But it wasn’t enough because I had reached outside of my energy bank to steal energy from the future. 

As I continue to peel back and remove my mask, I still find myself stuck on the couch some days. But I don’t get stuck there for as long as I used to. And I find great comfort in knowing why I’m stuck there, and that I am learning how to get “unstuck”. 

This is all goes to show how years of masking can truly take its toll

So when you see me next, if you notice I am behaving a little differently, maybe I’m acting a little more “awkward”, you shouldn’t be concerned. You certainly shouldn’t judge me for it. Instead, you should feel honored. 

If I let part of my mask slip away in front of you, I’ve done so intentionally, and it is truly the highest compliment I can give you. It means I feel loved by you, that I see you as someone I can trust to keep me safe, and that you are someone who will make me feel comfortable as my true AuDHD self.

Why I don’t want a “cure” for Autism

The idea is finally starting to phase out. But early on it was thought that Autism was something that needed (and should be) cured.

Though there are definitely some individuals who are debilitated by Autism, and all of us with ASD experience at least some aspects of a disability, these struggles largely endure because of societal expectations. Expectations of how a “normal” person should communicate, present, and otherwise function in the world.

But just because something has been deemed “normal” doesn’t mean it is the only way to do something. There are in fact a plethora of ways to happily, safely, and kindly exist in the world. A “you do you” kind of mindset should be adopted if we are to create an inclusive and compassionate society. 

This is the round about way of me explaining how Autism is not 100% a disability. I and many others with ASD are in fact hurt that some people think it is. Autism can certainly make life challenging at times. But if we look at Autism as a whole, rather than picking it apart and latching onto the negative aspects of it, Autism becomes more of an evolutionary variant from the “normal” humans society has come to know and expect

So to approach Autism as something that needs to and can be cured is the equivalent of trying to cure someone for being a… human. Now how silly is that? It’s like trying to cure someone for being left-handed (a history that shares many commonalities with that of Autism).

Autism is not a disease.

Autism is not fully a disability.

Autism is not something that is wrong with me or others like me.

Again, challenges created by Autism largely exist because society expects me to behave and live in a way that is simply unnatural for me. If Autism was the norm, and “neurotypicals” the oddities, would it not be difficult for neurotypicals to function in a world designed to suite Autism? 

So please, stop thinking of Autism as something that can and needs to be cured. It is insulting. Whether I like it or not, I have AuDHD. It is who I am. Without it I would not be myself. Suggesting I need to be cured, is like suggesting I remove a major part of my identity. 

To cure my AuDHD is to erase myself. 

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