Autistic Masking, Late Diagnosis, and Dissociation: The Toll It Takes on Autistic Mental Health

CW: Gaslighting, self-harm, intrusive thoughts

(Long Post, Summary/Conclusion paragraph at the end)

This blog post came about after having a dissociation episode after watching Westworld a few nights ago. This post has helped me realize the reason and cause of my dissociation, likely from being an undiagnosed autistic person for 25 years of my life.

The Undiagnosed Autistic Life

Imagine all your life, you’ve been told that you just seem a “little” off. Just, you know, a little different. When you give your opinions, you’re either ignored, or simply told it’s “not a big deal” when you were not trying to complain, you were trying to collaborate. Whatever you do, whatever you say, is annoying, is rude, is unimportant, is inappropriate. Other people make excuses for you. “Oh you know, that’s just how she is. She’s just a bit different from the rest of us.”

GIF of the mother in Fantastic Mr. Fox talking to her son: "I know what it's like to feel, different." as she is wiggling her hands.
GIF of the mother in Fantastic Mr. Fox talking to her son: “I know what it’s like to feel, different.” while wiggling her hands.

Imagine instilling this idea into the core of who you are. You decide to relish in the idea of being “weird” because there is no other option. You wonder why it is this way. You’ve created your own identity around what other people perceive you to be, in order to “get by.” You see this as the only way to survive the world.

Oftentimes, you genuinely wonder if you are an alien. You wrote about aliens since you were 8 years old. You like reading sci-fi and supernatural books. People joke about you being a vampire, or an alien, and you joke back, masking your anxiety. It sounds so silly, doesn’t it?

Imagine that you have been told your entire life, looked at your entire life, as just being a little bit “different.” Wouldn’t you wonder? Wouldn’t you try to explain it, when people think you don’t have emotions? When people think that because you sit still and don’t move around too much, that you must be fine emotionally? When your ears are constantly hurting from sounds while others deem your need for quiet to be complaining and annoying and nothing to be concerned about? Wouldn’t you wonder just a little bit? Why you’ve always seemed a little bit off? How you can actually be the same species as other women who do “women-things” much better than you. How they are seen as much better than your version of a woman. How they suggest that you get involved in “woman-things,” that you must love them. How you feel when you try them, are coerced into them, and hate the experiences they put you in. You feel like you are failing. You don’t know what you are failing, but it feels very important. They say you’ll enjoy it, just try it. You do not. It is horrible. You wonder why other women enjoy this and laugh and smile. You wonder why you don’t. You are failing. You distance yourself from all things feminine. You are not “one of them.” They laugh at your greasy hair and probably insult you behind your back.

Junior High

You are even more stuck on this question than before. People do not engage with you. You don’t know how groups form around you, and you hear chatter left and right. Wouldn’t you wonder? Wouldn’t you wonder how other people so seamlessly talk to each other? Where coughing, clearing their throat, seemed to indicate something from others, some sort of message? You try to understand how they seem to send signals that you don’t hear. The only logical possibility you come up with is, that maybe other people could read other people’s minds. You realize that it would explain all of these seamless interactions you have seen and observed for your entire life, that you couldn’t really unravel, and of course could never enter into. It would explain why people laughed at things that didn’t seem to matter. It would explain why people act as if you are invisible, why they do not invite you into their circles. It would explain so much of it. It would explain why you are inaccessible to their style of communicating.

You spend an entire year having intrusive thoughts because you are worried other people can read your  mind. You dig your fingernails into your neck to stop them. It seems to help very well. You do this mostly at school and rarely at home so people don’t know. You start doing this when you are angry. No one notices. When she asks, you tell your mother the bump on your arm was a mosquito bite, but it wasn’t.

After about a year, you decide that people probably can’t read minds. You try to “relax.” You haven’t seen enough evidence. You try to forget that you ever thought of it in the first place. Sometimes you forget you used to think this, and store it in the darkest part of your mind and put it away for a decade. You still have intrusive thoughts from time to time for the next year or so, but you gradually somehow get rid of them. You stop fighting them. You still don’t understand why people seem to interact so easily, and why you don’t.

High School

So many years of thinking you’re different, that you have to assimilate, so people don’t notice, so people don’t worry, so people don’t see you as a “little strange”, takes a toll on you. You try to keep your head down (literally), so as not to be noticed. You wonder how people can stare at other people’s faces and eyes all day. Eyes hurt. You decide that not talking is a way to reduce the number of potential failures you have and isolated feelings you have at school. Not talking, and reading books is how you manage. You are highly anxious and write angsty poetry, because you are a teenager. You are angry at the passing bell. It hurts every time, and you brace for the anticipation of it. You are always very aware of the time, to prepare yourself. You are angry at many things but you keep quiet. It’s the easiest way to deal with everything. People don’t seem to want to be friends with you anyway, even though you tried for a few weeks. You feel like a ghost, and the evidence points towards this. You walk out of class, and the teacher looks at you, laughs, and says she didn’t realize I was in class today. I was in my regular seat like always. It wasn’t out of malice by any means. I like that teacher – I didn’t blame her.

I was just a ghost.

Masking and Dissociation

After years of thinking this way, of dealing with adolescence and what exclusion, what lack in social skill, comes with that, my mental health took its toll. From pretending so much, in so many different spaces, I’d often see things outside of my body. I’d often feel like I was watching a movie as my body said something that seemed, less “different,” and more “appropriate.” I’d often think in the back of my mind, what would my mother say? What would my brother say? What would my father say? I’d insert a similar inflection and facial expression, just because I had seen my mom interact with others for my entire life. It made it sound believable. I knew what she was doing from a physical standpoint. I just didn’t know why she did it that way.

Now, Diagnosis
Imagine finding out a year ago that you are autistic. Imagine realizing that it explains all of these things that you’ve dealt with for most of your life. Imagine finding out that no one else’s ears hurt with loud/moderate noises. You pretended those loud noises didn’t hurt your ears for no reason. You didn’t get any rewards for it. In fact, no one even noticed. You realize that complaining you have to go “be a person” when going to social events, is not common but still is a common thought in your life. You realize that your brain is different compared to 95% of the population. You realize that you were not just “imagining” feeling different, that you were not a hypochondriac. That you had valid feelings and opinions. You are different.

This realization does not make anyone else understand or accommodate you. In fact, it creates confusion. The psychologist, who diagnosed you, says you are doing “very well” in life during the diagnosis interview and that you are “very high-functioning,” then back-tracks and realizes what they implied. They were surprised by my own articulation of my problems. They must have been expecting someone less communicative (and then would assume them to be “low functioning”). The psychologist asks if you have anxiety. Your heart is pounding 100 beats per minute. You are tightly holding a folded up piece of paper that you meant to give them since you came in, that elaborates on everything you said in the interview. You say “no.” They say “ok” and leave it at that.

Friends say, “oh but you’re just a little different! Everyone’s a little different!” They say that it couldn’t be, that you are so “very high-functioning.”  They project their ideas of the word “autism” onto you. There is even more confusion. But now you know who you are, even while they still gaslight you and tell you that you are rude or inappropriate, and yet, not autistic. You are just, still, a “little different.” To other people, you will always be a “little different.” Other people do not care about your own understanding of your brain. They still want you to be the same. They want you to “function.” They want you to be “appropriate.” They can agree you are autistic and then complain that you “dress like a child” when you were only trying to prevent a meltdown.

Some days I cannot tell whether I am being my mask, “being a person,” or being me. I am still working on that.

After Diagnosis – Westworld.

You still have dissociative episodes when saying something you know that isn’t really from you. You try to say things appropriately, using scripts. You are in the car with your boyfriend talking about youtube videos and suddenly see yourself outside your body. You have just learned about the term dissociation. You say, while dissociating from yourself “Wow I’m have a terrible dissociative episode right now.” It doesn’t help. You can’t do anything about it.

Imagine trying to watch a show that prides itself on figuring out What is human. Imagine seeing “robots” treated as things. Imagine watching as they become less of a “thing” and more of a sentient person. Your brain is breaking around this occurrence. You do not want to think about it. You think about what it feels like to be treated as a “little different,” in the back of your mind, a thought churning.

If consciousness doesn’t have to be human,

then what am I?

then what am I?

then what am I?

then what am I?

Am I human?

Imagine not getting to the root of the cognitive dissonance. You hear jokes about Data from Star Trek. You hear how “Zuckerberg is a robot” from your friends and colleagues.

You wonder whether you are a human. While growing up. While getting gaslighted by your family, by people who are well-intentioned and who love you. You do not understand why every single thing you say is read as a complaint, or ignored. Imagine not feeling that love. Imagine knowing there’s something a bit “off” about the way you work. Imagine that one silly question can envelope your entire life because of the way other human beings have looked at you and interacted with you. You still wonder some days.

Imagine how many interactions it took me to feel this way. Imagine how many people had to look at me differently, ignore me, assume my intentions, and disregard me when I offered genuine emotion.

Imagine what acceptance would have done for people like me.

GIF of the mother in Fantastic Mr. Fox talking to her son: "I know what it's like to feel, different." as she is wiggling her hands.

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8 thoughts on “Autistic Masking, Late Diagnosis, and Dissociation: The Toll It Takes on Autistic Mental Health”

  1. I can relate to SO much of this. You aren’t alone in what you are describing. Some of what you wrote about made me realize that’s exactly how I’m feeling but I’ve never been able to put my finger on it! Thank you for such an insightful post.

    Liked by 2 people

  2. ouch, this is actually painful to read. not because it’s badly written 😉 it hurts because i think a great deal of it is the case. i identify especially about this mysterious thing of being somehow weirdly invisible and every spontaneous utterance being a potential minefield.

    i’ve just self-diagnosed, pretty much, a few months ago and to be honest … it does send me into a bit of rage and depression that *not all people experience this* (and that’s why they function, lol) while i thought this is human life, basically.

    on the other hand, i wonder if a (really) early diagnosis is helpful or creates its own major issues (such as being stigmatised or put into “therapy” that aims to “straighten you out”). i’m honestly not sure what actually useful interventions there are? whether for kids or adults. i figure it’s mostly self-knowledge and other-knowledge, but how (whether) that will help me, we will see. hm.

    thanks for writing though, very concise nail on the head points.

    Liked by 2 people

    1. Yea, I think there would definitely be challenges with being diagnosed early as well, but they would be different kinds of challenges, although you could probably end up with the same feeling, that NT environments are simply easier for NTs to be in than for us to be in.

      And yes, for me the most help was learning about what part of my experiences actually spring from having an autistic brain – and even after 2 years I’m still finding more of them (just found out about “visual snow” visual processing this last week even!). Unfortunately I don’t think almost any current “interventions” are helpful. Learning about what is my sensory experiences and trying to reduce my sensory input has also really helped lower my stress levels, and knowing that I am autistic (not broken/weird/strange/bad human) has definitely relieved some major anxiety I’ve had during social interactions. Not all of it, but a lot more than I thought. Also trying to learn when I masked and when I didn’t mask has been helpful – figuring out what my “baseline” state is, without people around, and then trying to be that person more at least around people I know well.

      Other things I learned even after diagnosis:

      Other people don’t have pain with noises (probably said that in there), and eye contact literally means looking someone in the eye (I assumed they were not being literal, and they just meant “look at their face.” I thought I’d been making eye contact for 24 years.. turns out I don’t look at eyes!).

      These are the resources I’ve found helpful for me, more specifically about the internalized/anxious masker phenotoype:

      https://docs.google.com/document/d/1zOBA-iuS_-a2r8zn4A42v4nCH0FvabaFZaiOQeg4XGc/edit?usp=sharing

      Resources on this are very hard to find and a lot of the most helpful ones were youtube videos, especially the Neurologically Mixed Relationship video I have in there. Hope it’s helpful.

      Liked by 1 person

    2. And there’s definitely a kind of stage of grieving, as strange as that sounds. I was very angry for 3-6 months after I found out I was autistic too. It’s like finding out people have just lied to you for most of your life, and then you replay stuff in your head to understand it through the lens of being autistic.. and all those neurotypical expectations just seem so unfair, but you tried to live up to them anyway. And unfortunately it doesn’t go away later – because most people don’t care that you are autistic (or know what it is), so you’re still getting gaslighted about sensory pain. It’s just now, you know why you have it, and you know that other people don’t..

      Liked by 1 person

  3. I had that same fear in elementary school that other people could read minds and I was the only one not “in on it.” It’s so horrifying when your mind is your only refuge — to think you might not even be safe there. I’ve also dealt with intrusive thoughts over the years and consider that to be the worst mental condition I’ve ever suffered from. I’ve had dissociative episodes over the years, but they don’t bother me. I wonder if these are all common in autism?

    In my case (after getting over the mindreading fears), I finally ended up deciding in school that my unpopularity must be due to my looks and lack of athletic ability.

    I had two common daydreams in elementary school. In the more “immediate” one, I had an invisible bubble I lived in that nobody else could see, but that protected me and was always there. In the other, more story-centered dream, everyone on earth decided to leave (fearing alien invasion or whatever) except for me. And I just wandered around alone, happily doing whatever I wanted!

    Thanks for sharing this. It helps to know I wasn’t as alone as I thought.

    Like

    1. Oh jeez, thank you for your comment! This helps me too. The being completely alone on the planet was also one of my daydreams (or really, wishes sometimes!). Just to have no one constantly watching you or analyzing you all the time.

      I think dissociation is a lot more common than we realize. I think pretending to be someone else (or not knowing who you are in relation to other people) is bound to cause something like dissociation, especially when pretending not to be in sensory pain daily – you’re basically being another person for 8 hours a day, if not more.

      I agree that the obtrusive thoughts were the worst. They definitely were for me as well, but I didn’t elaborate on them in the post. It was very hard to think I was a worthy decent human being when having those thoughts. Somehow I got over the fear of the reading-minds theory too, and I honestly don’t know how I did. I’m very glad that I did but I really don’t know what happened. And after that the intrusive thoughts were a bit easier to control and eventually went away as well.

      Like

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