Facial Expressions and Intent

I seemed to have stumbled upon an article recently I was rather interested in that seemed to resonate with some people on twitter, and wanted to write down some thoughts here.

This article is specifically about how facial expressions are not simple expressions of emotions, but are potential indicators of how someone wants to steer the social interaction.  I find this important, because as someone who doesn’t often make facial expressions (unless it’s genuine laughter, or, masking laughter), people seem to think I am cold/aloof/”off”/uptight/defensive, and even hostile. It may be that they are confused by my lack of emoting. They may simply not know what to do because I am not steering any of the social interaction. I’ve never thought about facial expressions in this way, and I think this explains why non-autistic people so readily misinterpret me.

This can make me come off as uninterested, uncaring, unenthusiastic, or sometimes even very calm and level-headed (if everyone else is in a panic). Essentially, by not providing that social response, people can read whatever they want into my still/unsmiling face. This explains to me why I often become the backboard of people’s emotions and assumptions. My face can stay the same, but context changes, people around me change, and suddenly (to other people) I am angry, or bored, or sad. I’m mostly referring to people who are acquaintances or strangers, people who don’t know me well or only met me once or twice. People who do know me understand that my face simply does not represent my emotions or intentions often, and understand not to “read into it” as some sort of social communication. 

If things like facial expression and possibly tone of voice are about social intention, rather than representing emotion, then I’ve not faired well at most of my social interactions. This also explains why I felt like (and saw how) I was being manipulated when I was very young, as people never meant what they said. However, this is simply how most non-autistic people talk to each other and make their intentions in a conversation known (“I’d really like X right now”), and so rarely recognized their words as potentially manipulative, even if I pointed it out (child me: “You are just saying Y because you want me to do X, but you’re not telling me you want me to do X! Why don’t you just tell me you need help with X?”). Most adults seemed taken aback when I told them to say what they meant, and they simply went on talking around the subject. It was so frustrating when I could clearly see what was going on, yet no one seemed to be telling me the truth. I know now that the lack of directness by adults was due to trying to not seem “rude” to a child by being direct to them.

I find the best way for neurotypical people to understand us is to learn about their own subconscious social processing. If someone doesn’t know that they are performing tasks subconsciously, then they can’t understand how much work it takes us to do the same task manually. 

Hopefully, more awareness of the intricacies of the neurotypical brain and of neurotypical subconscious social processing will allow for better communication between neurotypical and autistic people.

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Anxiety Looks Like Anger

[Disclaimer: This post is targeted towards parents, as I have been seeing a lot of parents recently ask about what to do about their child’s behaviors (trying to figure out what is best for them, and asking autistic people). Similar versions of this can happen as autistic adults, especially when people misinterpret us as complaining or being “defensive.”]
Many parents have a hard time understanding that a misbehaving child is a distressed child.

A misbehaving child is a distressed child.

What anxiety can look like to a parent in their autistic child:

  1. Complaining about a task
  2. Rolling eyes
  3. “Being rude”
  4. Stomping feet, hitting objects, yelling and screaming
  5. Asking a lot of “annoying” questions – “being annoying on purpose,” which can make an exhausted parent annoyed or angry.

This is what the child is actually feeling (they are not trying to intentionally annoy you or complain or be rude):

  1. Frustrated – the task does not make sense, the child is stressed, it is loud/too many people/too tired. The child can’t do it right now. They don’t know why they are being told to because they literally cannot do it right now. Their brain isn’t working.
  2. Anxious, scared –
    • The child knows their anxiety is going to skyrocket when doing something, like going to the grocery store.
    • The child is anxious that they cannot control their environment, and is anxious that they have to do something RIGHT NOW and is having a problem switching tasks.
    • The child doesn’t know why they have to do something – it doesn’t make any sense to them and they can think of other solutions that require less anxiety by the child, but knows that if they suggest an alternative, they will be seen as “complaining” and “misbehaving.”
    • The things the child have been told are inconsistent – they remember being told they didn’t have to go to X thing, but it changed, and the parent pretends like the change didn’t happen, or never mentions the change at all, but expects the child to be ready to go.
  3. Confused, Frustrated – the child knows they can’t do the task, and is trying to make the task easier or trying to explain why they cannot do something – but they sound stressed so the parent interprets this as “rude” and “defensive.”
  4. Very Frustrated, near meltdown –
    • Usually occurs when the child knows that talking or asking questions didn’t help before, or they were already tried and it escalated the situation with the parent, as the parent is tired and wasn’t able to stay calm this time. The parent sounds annoyed.
    • The child is already stressed currently from the way the task was phrased (sometimes as a command rather than a question), as they don’t feel like they have any autonomy or control in the matter.
    • The child is already stressed from previous events in the day/week (school for example), and the only way they can get their frustration out is by stomping because they can no longer think or respond verbally and their stress bucket is finally too full.
  5. Confused, Anxious –
    • The child is trying to understand why this event that causes them anxiety and stress is important, as it does not seem logical and they don’t want to deal with the autistic burnout that will happen afterwards.
    • The child is trying to prepare for what the environment will be like or what the task will entail – often visualizing the task makes it easier for us to switch to that task.
    • The child wants to make sure that they will be safe during the task/event and that everything is accounted for – that their parents won’t forget important things for the event.
    • The child knows that it will be much more stressful for them than for their parents, and their parents may not understand their sensory sensitivities, so knowing what will be happening is important for the child to prevent meltdowns/shutdowns. They want to make sure they are getting an accurate account of the sensory situation – how many people will be there, what the building is made of, etc, but know that your parent may not even think of that. You’re not sure if their answers will be right because oftentimes they are inaccurate (since their brain experiences things differently).

Strategies for Parents

For all situations except #4 (which is essentially meltdown territory that requires support and heading the child to a quiet safe place they can calm down in):

  • it is important to take your child’s anxiety seriously. Don’t say generalized things such as “Everything will be fine” – as in many cases it is not, since we have different sensory experiences than non-autistic people, and many non-autistic people can’t be aware of many sounds/lights/smells that are experienced by autistic people.
  • It is important to validate your child’s feelings. “That does sound very frustrating.”
  • If they need to be reassured about information of the event, tell them what will happen step by step, answer all of their questions (such as in #5), even if it can seem exhausting or repetitive to you. If you don’t know something, don’t pretend you do know or use vague statements – simply tell them “we’ll work that out together” and create a backup plan to let your child know that they will be safe.
  • If they are “complaining” about a task, ask them what would help. Do they need downtime alone before they go out to the grocery store, and downtime when they get back? Do they need one less chore that day to have enough energy to go to the event, or do a larger more important task?
  • Make a compromise – pretend that you are talking to an adult who has just as much autonomy as you. Try to listen to what they are saying – do they say the event is “unpleasant?” Is there a sign of pain or discomfort or anxiety in anything they mention?
  • Find the cause or reason they are upset (it may have to be another time, when they are less stressed and upset) – is it due to the unexpected schedule, or the lack of downtime? Is it because home and school environments have been different/busier? This requires time and various communication methods (emails/typing/writing may be easier for some children to talk about their feelings, rather than verbally – it gives them more time to process and answer your questions).

Punishments Don’t Work

Punishments don’t work. That only feeds the anxiety and stress in your child as they are already anxious, which is why they are behaving the way they are. Giving your child choice, even “illusive” choice, is better than making demands. For example, you can tell your child what will happen if they do not do something – but don’t say they have to do it. Telling your child that they have to do something makes them feel like it is a life and death situation – and most of the time, it isn’t! It is not the end of the world if a child doesn’t turn in their homework, or they are late to school because they didn’t put their shoes on. The important thing for you to teach them is emotional regulation and to help them learn that their feelings are valid and real – which well then help them learn to use strategies to calm those emotions. If they do not know what they are feeling (which is very common, as alexithymia is common in autistic people), they will not know they are upset – and this can lead to #4, meltdowns (and shutdowns). As a parent, you can model emotions for them by telling them how you feel. Example: “I feel anxious as I was not able to make dinner for you on time, so I will try to take a few deep breaths and do an activity I enjoy to try to calm down.” Having your child know that it is okay to acknowledge anxiety will allow them to feel less shame about processing that emotion and admitting that to others (as a person who was undiagnosed, I rarely expressed to anyone that I was anxious – in fact my parents were never even aware I was anxious in my childhood. I assumed I wasn’t anxious – mostly because I always was).  Acknowledging anxiety often helps one process and deal with the anxiety itself.

Emotional Regulation

Sometimes, meditation helps people regulate their emotions. Personally this has not been the case for me (and can cause frustration from listening to everything around me). Distraction has often been my best regulation technique – reading something I am interested in, or watching a tv show which lets me pay attention to that, rather than emotions or sensory stimuli. Breathing exercises when upset has helped, mostly with hyperventilation, but for the most part, (if not in a shutdown or meltdown, but pre-shutdown and pre-meltdown), simply having someone ask me about something I’m interested in and letting me talk and ignoring the current emotional situation altogether has helped me the most to calm down. I think of a shutdown as waiting for my brain to calm down, because that is simply all you can do once you are in a shutdown. This thinking has helped me wait it out more calmly, rather than become more anxious and spiral into negative thought cycles, as I am able to separate my logical thinking self from my currently anxious/overwhelmed/petrified brain.

Feel free to comment if you have any other ways you regulate your own emotions, or other ways to deal with preparing for events that make you anxious.

A flow chart titled The Demand to Anxiety Cycle. It's showing the circular cycle of a parent giving a demand to an autistic child, and the child becoming anxious and being perceived as complaining/rude, rather than anxious. This makes the parent push back further saying "You're going because I said so," and leads the child to have a meltdown or shutdown, crying/frustration.

Disclosure, Jobs, Networking

[My current personal experience on disclosing: I have luckily never had to officially disclose to anyone in my lab, as everyone is honestly very supportive and understanding of my hyperacusis in general. If I need to, I just say “sorry I’m literal, do you mind rephrasing that?” or tell them I just have a hard time understanding abstract concepts. In general, this seems to be the best course of action for me. No one gives me any problems in terms of wearing headphones – everyone is really accepting and knows that I can hear them and interacts with me the same way. So I have never had the need to disclose because I’m sure people would be more than accommodating if I asked or if I needed something, and usually they are. I don’t think using the word autism or autistic would necessarily add, or take away, from how my life as a student is going right now. It is often other people, like acquaintances or strangers, that I feel would be potentially helpful to disclose to (or would simply be needed due to needing accommodations or them misunderstanding my body language – usually it’s the latter).]

Disclosure

There are a lot of non-autistic people who would like to know about whether autistic people disclose to their employers. Unfortunately, there isn’t a yes or no answer for that. Essentially, the question is, do you trust the person to understand what the word “autism” means? Do you think that will give them any helpful information? Would they know what accommodations you need simply by saying you’re autistic?

It is a lose-lose situation when it comes to disclosing, in my opinion. If you do not disclose, which I never have officially, people (especially acquaintances or strangers) may completely misread your autistic body language and tone of voice. You may be seen as anxious, deceitful, or not confident due to how you are sitting in your chair or how you are talking, or simply by standing still.

However, if you do disclose, this may be what happens:

These same people who may think of you this way, when you mention the word “autism” or “autistic” to them, may then assume you lack Theory of Mind, so you cannot understand other people’s feelings, intentions, or social cues. They may think that you must not feel much emotion. They may assume that because you are autistic, you are incompetent at even simple tasks. They may talk down to you, as if you are a child. They may also assume (implicitly) that your opinion is not as important as someone else’s, due to potential “theory of mind” problems or potential communication problems.

And the other side of this, is that they may think you are not autistic and simply tell you that “you don’t have autism” because “you can talk” or “you have a job” or “you’re a woman,” or say “everyone’s a little autistic!”

[The one time I did tell a peer because the conversation veered into autism, he said “I never would have known you were autistic.” Of course – he worked with autistic boys before, but had never seen anyone like me be openly autistic. Not as bad as the previous statements, but it just goes to show you how misunderstood autistic people are, especially when someone who worked in the field didn’t know that people like me existed, and just how much misinformation there is about us.]

 

Here is Why

What do you see when you google the word autism?

You see non-autistic people telling autistic people who we are. You see “symptoms” and “communication problems” and “behavior” issues. You see (I will not link it here), a New York Times article about kids who “beat autism.” It’s toxic and despicable. You see white boys hitting their heads or not talking or looking frustrated into a camera.

You see children being described at the most basic level possible – as behaviors, in fact, as “stereotyped” behaviors.

I was asked if I would disclose my autism diagnosis to employers.
My question in response to this was, why would that help?

Why would I expect anyone to know about autistic people when the majority of what is put on WebMD or research articles or psychology databases is wrong? Why would I think that that would help me? How would an employer think that I was the same person, after googling that?

What does saying “I’m autistic” convey to a non-autistic person? You may as well say a made-up word like “I’m flilamistic,” or any other made-up word, rather than disclosing that you are autistic. People would likely be confused, or say you don’t have it. Or people would just look at you funnily for a very long time. These are the kinds of things I think about when I am asked a relatively simple yes or no question. Because unfortunately, most questions about autistic people communicating to non-autistic people are complicated.

 

“Networking” and Sensory Processing Differences

Sound

The most difficult thing about even attempting to job search is dealing with the environment. Most networking in academia is through conferences. Conferences are a large venue where anywhere from 50 – 2000 people stand in a room and converse, all at once.

Imagine that you are driving somewhere, and your radio station starts going to a different channel. Imagine that you hear some static at random times, then hear every other word someone is saying, alternating channels constantly. Eventually, the two radio stations start overlapping and you’re hearing both things at the same time in great clarity. And there’s no way to turn it off, while the volume knob slowly keeps increasing.

That’s a big part of my auditory sensitivity, and a big reason why networking in person doesn’t really “work” for me. I was just told last week that networking in person is the best way to interact with people, but I simply know that this is not the case for me. Most of it takes place at socials at conferences, or dinners with acquaintances or people you don’t know very well, but you may have read about their research. Dinners are loud, bars are loud, conferences are loud. They all have something in common – those spaces include lots of people talking in one area. Networking involves filtering auditory information, and my brain doesn’t do that, not to mention give out the correct “neurotypical” social cues and signals, so as to not make the “wrong impression,” and to try and recreate “genuine enthusiasm” as accurately as possible, though it often comes across as disingenuous by others.

The other issue is my hyperacusis. Headphones are the best for this (because then I can still hear other people fairly well, and my tinnitus doesn’t act up). But wearing headphones at a dinner, or at a conference, or while presenting your poster, is generally not acceptable, nor is it understandable by the general population. If I wore headphones when presenting a poster, most people would assume I was not the presenter (though I have not tried this yet). They would probably think I did not want to talk to anyone, or worse, that I’m being rude or trying to ignore other people. Ironically, the only way I can talk to them is to wear headphones. I can’t think if sound is bombarding my brain. At the same time, to other people, my headphones make me unapproachable. These are the main issues that I face as a person with a different sensory experience than other people. It has a huge impact on the places that I am able to network in, or attempt to at least. Not knowing what kind of environment I will be in before I go to the conference, or what the schedule is, is another issue for me. Will it be in a very small room with lots of people that I can’t cope in? (I nearly had a shutdown the last time I presented a poster for exactly this reason, but ended up making it the several hours I needed to, then left and felt like my brain was going to implode. I had to suppress myself from rocking my head when I sat down afterwards, as you know, “people” were around. I think I actually banged my head on the wall a few times, not obvious to others).

The number of people in a conference does not correlate with the environment – in fact, often small conferences are the ones with only a few rooms, so there are proportionally more people per square footage at smaller conferences. Recently I had to find an empty room to not get overwhelmed by a conference. I was lucky this time, but sometimes there aren’t empty rooms. I try not to wear my headphones if I can help it, as I do want people to approach me if they want to. I know if I wear them, I probably won’t be approached by people I don’t know – hence, no chance for networking.

Formal Clothing

Another big issue for me for networking and making a “good impression” is clothing. Today, I spent approximately two hours online looking for a plain buttoned-down non-transparent shirt that was actually long enough for my torso, and did not have ruffles or annoying sleeves. I found approximately one potential shirt (although it will probably be too short). Women’s formal clothing is nearly impossible to be comfortable in and “look nice” in, especially for autistic people. Sometimes I intentionally choose to dress down because I know for the entire day, I will be constantly reminded and annoyed that my skin is touching that shirt material, or I will be scratching my neck because the tag is annoying. And I know that I will be more nervous and possibly give a worse presentation simply because I’m wearing a shirt of that type of material, instead of my usual clothes (ones with no tags in the back, and no collar, and also pants that actually have pockets! – rarely do formal women’s pants have reliable pockets). Wearing “formal” clothes really is a tax on my mental and emotional resources, and currently, I don’t think it’s worth it.

Autistic body language + sensory needs already have me starting on a worse first impression. Do you think you would approach someone who has headphones on and wears jeans and a t-shirt? Do you think them telling you that they were autistic would make your perceptions any better? What about for the average person who knows very little about autistic people in general?

 

Expectations

I’d also like to mention the social pressures that are put on (autistic and neurotypical) women/non-binary people. Society pressures us to be enthusiastic, “nuturing,” “polite,” and to be natural at performing emotional labor. For autistic women, this expectation is compounded by the fact that we may not be able to word things “politely” all the time, or show neurotypical enthusiasm like other people. And so this incongruence (in assuming women must be more empathetic, polite, and welcoming) when meeting us for the first time, may be quite off-putting to others. Often I feel as if going in one direction is the only option I have – either completely putting my energy into masking, or not trying to mask at all and rather try to be myself. If I put effort into masking in part of the way I talk, or part of my personality, but not in other parts of my presentation, it feels like people are off-put and more or less confused by my social presence. I don’t know the right answer – and really, there very much isn’t one. Like I said earlier, disclosing is a lose-lose situation, masking/not masking is a lose-lose situation. We are often stuck between a rock and a hard place with few reasonable options.

In the future, I would like to be open about my neurotype, but this is my hope and optimism kicking in, not my realism, which usually guides my choices in life. There’s no right answer to this. And I don’t think there is one sort of guideline for approaching disclosure. It is a tough question because you do not know what will happen once you do disclose. I don’t think telling people to never disclose their diagnoses because of the stigma around it helps anyone, though. Personally, I want to at least try to be open about my neurotype, so that people see that autistic people exist – autistic people who are women, who can talk and communicate, and do all other sorts of things. But who really knows what I’ll do when the realism sets in again.

“Sensitivities”

Things neurotypicals (most of them anyway, hopefully, really) now understand are not a “choice” but are genetic:

Being gay/bisexual

Being transgender

Things neurotypicals (most of them anyway) now understand are different brain processes:

Being colorblind

Having synesthesia

(maybe?) having prospoagnosia

The thing I still don’t understand is why can non-autistic people not believe that loud sounds, or bright lights, or light touch, can literally cause us physical pain? 

I don’t understand why non-autistic people can listen to someone who had a concussion, or who just got their eyes dilated, and so are sensitive to bright lights, and respect, understand, and accommodate them. In those conditions, people usually understand and go “oh ok I’ll turn the lights down.” But if for some reason you just grow up with that sensitivity, that you’ve always had – somehow it’s impossible for them to understand that that could be your life ALL the time. That it’s genetic. That that’s how someone processes information constantly.

Somehow non-autistic people still don’t believe autistic people’s sensory processing experiences, overwhelm, and pain.

Does it need to be called Sensory Processing Pain Disorder? Because that is what it is. It is pain, pure and simple. It is not anything less than pain. 

More Analogies

Do I need to make analogies of being disoriented and overwhelmed for NTs to understand? like being on a high dose of LSD constantly?

Imagine being on a high dose of LSD all of your life. Imagine going to school while being on LSD. Imagine not knowing how to talk to people on the playground because you’re taking in all this information because you’re on a high dose of LSD. Imagine people telling you to “get out more” and “go talk to people” and “stop worrying about things” when you’re scared because you don’t know what’s going on because there are so many things happening, sounds, lights, people talking to you, and you’re on a high dose of LSD. Imagine people reprimanding you because you didn’t do something right because you’re on a high dose of LSD. Imagine them just telling you to “try harder” or “stop complaining” while you’re already very overwhelmed because you’re on a high dose of LSD.

It’s ironic to me that being on drugs is a decent analogy for explaining sensory differences, when I have never done recreational drugs (including drinking alcohol) because I worry my sensory processing would go even more haywire. It’s also ironic because when I am particularly tired and cannot mask, people think I am stoned. I’ve been asked in college if I was stoned because I stop looking at people’s faces and I don’t have any energy to perform NT-speak. Turns out, I’m just autistic! I just experienced this rather recently as well because I was too tired to mask.

What do I need to do to make non-autistic people understand that we have different sensory experiences than them, and have had different sensory experiences since birth? They can be overwhelming, unpleasant, and painful. They can be beneficial in some circumstances, and honestly, debilitating in many neurotypical environments. They can be both. But one thing is certain: They exist, and are real. 

Why is it so “wild” that sounds could physically hurt you? or bright lights? Why is that where they draw the line on what could be a neurological difference?

It’s so hard to portray disorientation, sensory overwhelm, and sensory pain. And I don’t understand why it has to be so hard to do!

Why can’t people just believe us?

Leadership Skills

Once, I took a class about leadership, but really it was a presentation class. Every class period, we learned to be more aware of what we were doing, how we were sitting, how it felt. I was waiting for them to say what I was doing wrong, how I wasn’t speaking well, or not making eye contact, or not taking my hands out of my pockets. I was waiting for them to show me how to do presentations “right.”

Clearly I didn’t know what I was getting into. In fact, I was told that everyone presents differently, and talks differently, and exists differently. Every time I said “yea sometimes I don’t talk loud enough or don’t communicate very accurately” the instructor said “Really? You really seem to be doing fine to me,” I would think, I am? Do they really mean that? That can’t be right. That’s not what I’ve heard before. Every single class period, we would just talk about things, and go around the room. They would ask us how the person who was speaking acted – did they fidget with a pencil? Were they in open or closed posture positions? Where did they look? Who were they engaging? How did they like to sit?

And every class period, I thought, Ok, here’s the right answer. They’re going to tell us the right answer now. And every week, they would say, “This class is for you to learn about how you move your body and what feels comfortable to you, and just make you more aware of it so that you can hone your strengths and know what works for you.” And every week I was waiting for that facade to break. I thought, no way, they can’t just say that! No one has ever said that! But it never broke. I was desperate to get tips so that I could fit in, so people would stop telling me to look up more or speak louder or “sound confident” (by far the most infuriating one). And every week my perspective was flipped. I got *gasp* validation?! What is that? What do I do with that? That it’s ok to stand still while presenting?

“Did you notice you were doing that? It seems to really work for you, and ground you.”

That it’s okay to not look at everyone’s eyes across a room? That it’s ok to sometimes, when you need to, to put your hands in your pockets?

“See how you kind of relaxed once you put your hands in your pockets?”

It really wasn’t what I was expecting at all. It was a really small class. A lot of people hated it. They wanted to “learn leadership.” They didn’t want to learn presentation skills. I was kind of blown away by it. I was like, my body language is acceptable to most humans? Is that what you’re telling me? That can’t be right! And like, to be fair, sometimes it’s not right – sometimes people judge you just for being you. But damn, that validation was kind of eye-opening for me. This was before I completely believed I was autistic (though I did some thorough research on the subject before then, of course), and it was before I really understood that maybe I just have different body language, because you know, I’m autistic!! I just thought they would give me rules, and I would follow the rules and win over the people I don’t normally win over – usually the extroverted, less anxious, talkative small talk people.

So, the bad part is that there is no silver bullet for “presenting.” There’s no right way. If I walk around, I’ll probably get anxious and forget what I was going to say. So maybe I won’t do that. The other bad part is that yes, sometimes people will judge you for your natural (potentially “boring,” “less enthusiastic,” “less confident”) presentation style. In fact, I did worse on the last day of class presenting because I was so absolutely aware of what my body was doing – now I knew how other people probably perceived me and it scared the shit out of me. I was completely hyper aware of how I presented myself, which didn’t do me any favors. But I think it has helped my presenting in the long run, to understand how I work.

But the good part – the good part is that autistic body language is VALID. And I didn’t even first learn that from an autistic person (that I know of). I had this amazing opportunity to actually be understood and validated by someone who doesn’t have my neurology and who acted like I was perfectly natural, like I was a human being who wasn’t doing anything wrong by existing by myself. And I am a perfectly natural, autistic human being.

So that’s kind of awesome.

Autistic Burnout, “Regression,” and Identity Crisis – #TaketheMaskOff Week 4

Part 1: Autistic Burnout – Playing on the Social Field

Autistic burnout = I literally can’t pretend and devote 90% of my energy to being on your social playing field anymore. Metaphorically, I have to go lie down in the grass because I’ve played too many games on the social field. No one will have noticed until I go and lie down, even though I was more exhausted than everyone else while playing the social games in the first place. But because I was still doing my best to keep up, and was able to keep up, even though it hurt, no one could notice my pain until I stopped playing the game. And that is dangerous for us. That means anxiety, depression, self-harm. That means that we don’t have any resources left to do daily tasks, or take care of ourselves, or to translate our thoughts to NT-speak. That means we stretched ourselves too far. It is much worse than just “feeling tired.” It is stress and scary thoughts. It is not having any thoughts to contribute. It is a literal health risk, both physically and mentally, but is invisible to our neurotypical peers, because we desperately try to keep up, disregarding the risks to ourselves while they are running safely and easily on the social field. They are completely unaware of the effort we put in to  playing their social games, because we spend our last ounce of energy on making it look easy. And eventually we fall and crash and lie down.

That is autistic burnout.

 

Part 2: “Regression”

I hate the word “regression.”

It is not regression – it’s the fact that I can’t keep up this act for more than 25% of my lifespan. That masking may have already shortened my lifespan.

What happens with autistic burnout – with exhaustion – is that you can no longer hide yourself in society. You can no longer step outside and have that “shield” in front of you, even if that shield slowly zaps your energy and mental health in the process.

The idea that a person who is wearing headphones/stimming/not making eye contact is “more autistic”  than they used to be, is such a flawed one.

  • Person without headphones – people interact normally with.
  • Person with headphones – people are confused by, think they cannot hear, or ignore them altogether.

The person in there doesn’t change! The person is the same person. The way people react to that person is different. Society sees autistic people as “regressing” simply because we are being our autistic selves and because we have been taught (implicitly or explicitly) to suppress our identity for our entire lives. No one’s regressing. That adult, or that kid, is the same person they were a month ago. They just can’t pretend to be someone else out in the open anymore. They are exhausted from pretending to be someone else for the last 5-90 years.

I will state that yes, with exhaustion, you may be less likely to verbalize your thoughts or may need to stim more to regulate your sensory environment, or may be extra sensitive to stimuli. But that doesn’t somehow make you “more autistic” than you were. Our brains react differently to stress than a neurotypical person’s brain – that doesn’t make us “more autistic” when we’re tired. We’re just autistic, and we’re tired. Tired from years of pretending that we are not autistic.

For example, what does an exhausted neurotypical person look like? Can they do the same things they did when they weren’t exhausted? No, they can’t! Does that mean they’re “more neurotypical”? See how illogical that is? They’re just tired! Human beings have limits, and autistic people (i.e. human beings) aren’t any different.

For me, autistic burnout and “regression” brings out the arbitrariness of functioning labels. Just because people now notice that I’m having trouble with eye contact, or that I’m accommodating my auditory sensitivity, doesn’t mean that I am “more autistic.” Either I can be in pain and “pretend” not to be and be miserable, or I can wear headphones and be better able to verbalize my thoughts.

If you were me, which one makes sense to do? And which one is going to get you more noticed? Probably the latter.

 

Part 3: Identity Crisis

And especially for us late-diagnosed folks, it takes quite a while to realize just how much energy we have devoted to masking. And while I kept uncovering things, I started to get more and more frustrated, and more and more tired, because I finally knew just how little other people had to expend to communicate with others. And at first I was angry – I mean, how did I not know this my entire life?! Then I was bitter – realizing how much energy was wasted on masking. Then I was sad – what could I have done if I hadn’t masked? Could I have done more? How would my life have been different?

But then, I got to this state – exhausted. After learning just how much effort I had to put into my communication with others and with sensory environments compared to what neurotypicals put in, I learned just how tired I was from it all. Because only once you start unmasking (even in small degrees), do you realize how much time and energy you have spent on this mask. Just how much time and effort you spent into crafting this magnificent, elaborate illusion of who you are, an identity which you’ve whole-heartedly believed in for the majority of your existence. And then you find out that other people’s masks are not elaborate or magnificent – they are only facets of who they are, pieces they choose to show to the public, which are still commonly themselves. Their subconscious social processing allows them to filter their thoughts and feelings into an appropriate existence in social environments without them realizing this at all. Their mask is rarely all-encompassing. Their mask is rarely used in the privacy of their own home, or when out with friends. Their mask is selective. Our mask is not. Our mask is who we are to others. But it is not who we are to ourselves. But if you believed that was who you were for most of your life – it takes a while to get your identity back. You thought you knew who you were, and now you must decide who you are not. Do you whittle everything down until there’s nothing left?

There will inevitably always be a mask on me. I’ve slowly made it less magnificent, less fanatically NT. I’ve made it more manageable. I’ve pulled it out when needed from time to time, and practiced putting it away. Parts of my mask have likely fused to my identity. But I have whittled the other parts down: an ongoing, difficult feat.

Like young vines growing on old trees, something new seems to be emerging – and I think it’s me.

A white kid with long red hair, a string of lights around her head, sitting in front of a tree trunk at night, holding the lights in her hand, looking past the camera. Photo by Matheus Bertelli on Pexels.com
A white kid with long red hair, a string of lights around her head, sitting in front of a tree trunk at night, holding the lights in her hand, looking past the camera. Photo by Matheus Bertelli on Pexels.com