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.

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AutCollab Mosaic

I don’t have a blog post this week, but I did send in a piece to an AutCollab project. The project is to have lots of autistic people write about “what constitutes the essence of autism.” It seemed like a very vague question, but I felt like answering it for some reason, so I had a pretty long response to it.

 

You can read my response here.

“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

 

 

Online Communities, Happy Autistic Stories

So, I never talked about it on here, but I wrote a guest post for the amazing Katherine May (author of The Electricity of Every Living Thing) about how online communities provided an outlet for me to socialize and be myself, especially when growing up (and nearly just as much now). It’s essentially a safe haven for me to interact with other people, especially through voice chat (I also love typing but my wrists start hurting at some point). Voice chat allows me not to worry about whether I’m faking eye contact “okay” or whether the person I’m talking to is bored by what I’m saying or upset. You just say the things. Sometimes you’ll get a response, sometimes the conversation will move on. Sometimes you misunderstand a joke and resolving the conversation is found to be a hilarious misinterpretation. It’s really all in good fun.

My internet interactions remind me of a recent (and wonderfully done) journal article that came out about autistic people’s social interactions with each other. Essentially, the authors state that autistic people would keep saying different references and lines until something sticks with the other person, and they then reply and then have a conversation about it. If they don’t understand something, no one is absurdly shocked or surprised. If something the other person said doesn’t resonate, they simply don’t reply, and the conversation moves on. It’s not that they are trying to ignore the other person, they probably (in my opinion) just don’t have anything to say in response to that sentence. That doesn’t mean they’re being rude. This study was specifically recording social interactions while autistic people played video games together. Most of my social interaction online is while playing video games. It gives you something to talk about when you don’t have much else to say, and like they said in the study, if you’re in real life playing the video game, you’re focusing on the screen in front of you, and you are not required to look at the other person, even if they were neurotypical. I know for me, this makes auditory processing easier and frees up more resources to think of what I’m going to say next.

They bring up a really important point in their research, essentially saying that misunderstandings were smoothed over rather quickly because the autistic person would simply switch topics or move on to a different topic, and would not be offended or upset by the previous misunderstanding.

I think that autistic people may even be more forgiving than neurotypical people exactly because we are constantly misunderstood all the time via body language/social cues/tone of voice. We are probably more likely to be understanding when there is a miscommunication and more used to moving on with the conversation, as this happens with neurotypical conversations all the time. I think we’re more likely to give each other a break. And I also think we are more likely to assume that other autistic people have good intentions, even when there is a misunderstanding. I often read autistic people’s writing and notice that I would phrase something the same way, but see how that may be misinterpreted by a neurotypical person. I think we understand that everyone else is trying just as much as we are to form friendships and connections, and that autistic people’s neurotypical-based social skills don’t correlate to effort. We know we are always trying even if it doesn’t look like it to other people. I would be very interested to see how neurotypical/autistic interactions occur in this same video game environment.

It’s really exciting to think that in the next few years (and this year!), there is literature out there supporting the positive interactions autistic people have with each other. That when interacting with each other, we do not show “impaired” communication or “impaired” theory of mind. In fact, it seems like we are likely much more understanding than the neurotypical people who interact with us. I hope this information gets out to neurotypical people at some point, and this language about “impairments” is changed to reflect the current research.

When I tried to look up this research paper on google (googling “autistic people’s social interactions with other autistic people”, with the google search suggesting I put in “autism and social interaction problems”), all that came up were articles about the “impairments” we have with social interaction and that even “high functioning autistic adults” have problems with social interaction and difficulties with theory of mind.

I hope that in a few years, there will be other results to choose from.

 

References:

Heasman, B., Gillespie, A. (2018). Neurodivergent intersubjectivity: Distinctive features of how autistic people create shared understanding. Autism, 1-12.

“Just Be Yourself” – #TaketheMaskOff

Neurotypical people say this a lot. I’ve heard it many times, followed by “relax!” like I wasn’t relaxing properly. It is not easy to be yourself in a neurotypical society. This is what neurotypical people don’t realize when they tell autistic people to be themselves.

I want to talk about what happens in an autistic person’s daily life when they don’t mask, because it’s not something neurotypical people likely see. They don’t see us being misinterpreted, talked over, or assumed to be rude. So, these are some of the reasons why we need to mask, why we need to feel safe in a society that isn’t naturally welcoming to us.

People say “oh well we all mask!” like it’s some sort of exhausting thing for neurotypical people too. But the difference is what happens when we do not mask, when we are too exhausted to mask, or when we are actively defiant of neurotypical norms.

Neurotypical Reactions to Unmasked Autistics:

Daily Misinterpretation

The first time I truly asked a math teacher a question in class that I felt would truly show my incompetence, their response was to rehash the entire concept that they had just taught to the whole class. I had already understood the concept. I felt embarrassed because she had completely misinterpreted my question. I was asking about the wording of the problem and what was being asked of me very specifically, not about the concept I needed to utilize. She explained the concept again, and acted like she had answered my question, and walked to another student. I was left in confusion and frustration. If I had asked 50% of the questions I never asked in school, I probably would’ve gotten very similar responses from teachers. I was slightly relieved I had only started asking questions in high school, and how much humiliation was saved from not asking questions.

This kind of misinterpretation still plagues me. Many times, I will feel as if I’m saying exactly what someone else is saying, but they will not understand my analogy. They will think I am saying something completely different, and only when I repeat what they said on their terms, do they agree with me. Oftentimes it is easier to simply try to solve the problem myself than to ask, because asking is just one more problem to be solved.

Verbal Ability

When I end up highly frustrated, or just exhausted, I cannot speak with the right context (but can speak in at least sentence fragments, possibly full sentences). I am then told that no one understands what I am saying, of course in a frustrated tone by the other person. I am then bombarded with more auditory stimuli, like that will somehow help me think and get words out faster. Sometimes I simply shake my head no, or put my hand up (like a stop sign), signalling that I’ve given up. Maybe I sigh and say “nevermind” under my breath. It is always an effort to talk in another person’s language. So it is always an effort to talk.

Eye Contact

This one is likely the worst of all. There are some people who don’t mind if I stare off into the distance, or look at the floor. But there are others who are adamant about eye contact and will judge you for not doing it, or not doing it correctly, whether they realize it or not.

If I  don’t give them eye contact:

• They may talk to me like they are dominant in the conversation, and I am somehow being submissive by looking down and talking relatively quietly (but audibly).
• They may expect a quicker response to know that I’m paying attention.
• They may get concerned (you know, with their Neurotypical Worry), and proceed to try to force direct eye contact with my pupils for the next 3 minutes of the conversation.
• They may think I am not listening.
• They may think I do not like them.
• They may think I do not want to have a conversation.
• They may think I am being rude on purpose and somehow inconveniencing them, since I am, so clearly (to them) NOT paying attention, no matter how wrong they are.

When I reply with a well thought-out answer, it doesn’t matter. To them, I am showing disrespect. What I say doesn’t change that.

Tone of Voice: Volume

For me, this is by far the most common problem. You see, I talk quietly. Everything in my head – my chewing, my breathing, my talking, – is likely amplified compared to a neurotypical’s inner auditory experience. The reason I speak quietly is because I can hear myself perfectly clearly in 90% of situations. If other people spoke the exact same volume as I do, I could still hear them. But they often speak so much piercingly louder because they do not have that kind of hearing. 

This is a very common interaction I have, especially on the phone:

Me: Says something.

Them: “What did you say?”

Me: Repeats at the same volume, but thinks it’s slightly louder.

Them: “I can’t hear you!”

Me: Shouts what I said previously.

Them: *assuming I am trying to be rude, will act hostile towards me for the entire rest of the conversation.*

This happens way too often. I can only mumble, or shout. There is no inbetween. People think mumbling is inconsiderate and see shouting as rude and aggressive. This is an area I have not been able to “mask,” even with all of my years undiagnosed and immersed in NT culture. It is exhausting. It makes me not want to speak to strangers, ever.

I once asked for spinach at a Subway, and they asked me to repeat it, and I did, without shouting. They thought I had said tomato. So then I had a sandwich with tomato on it. It’s not worth arguing about. They don’t want me to shout. This happens way too often in sandwich places. A different time at Subway, they asked if I wanted it toasted, and I said no, and they asked me to repeat it, and I said no and I shook my head no (side to side). They toasted it anyway. It was actually pretty good toasted so I can’t complain about that one. But this occurs far too often for me to want to go out to eat, and can happen at restaurants too.

I’ve had a receptionist literally yell at me because I ended up shouting a number at her, because she asked three times before what I had said (meanwhile she was barely audible on the phone). I asked a question after that and she was absurdly rude, refused to answer the question, and yelled at me “Do you want an appointment OR NOT?” like I was somehow intruding on her lovely day off.. it was definitely not her day off.. she was at work.. to answer phones and schedule appointments. But for me, she didn’t have to do her job. Because I was “rude” for asking a question that was quite relevant, and for telling her a number in a “defensive tone.”

These are not isolated incidents. This would happen everyday if I didn’t mask while interacting with the outside world. This is my life.

 

Neurotypical Judgment

Sometimes, I have gotten yelled at for simply existing. For not doing something expected of me, when there was no way I would have known. I feel like people who like to roll over others are drawn to my blank expression and assume I am either unimportant, incompetent, or “being rude” by standing somewhere.

I have gotten yelled at for not closing a door. After I said “sorry” to her and closed it, she then told me (aggressively, clearly annoyed at me) that she was “not talking to me” and pointed to her earbuds, like that somehow meant she couldn’t hear me. Everytime I saw her thereafter I have been petrified, and have made sure to close the door.. She has not yelled at me or talked to me since.

I have gotten yelled at for standing somewhere, where I was told I should wait, after a service person had a heated argument with their family member. I was supposed to wait for my results, but I did not. I left because she literally yelled at me, saying “Why are you standing here?!” (She told me to wait). The reason I was there in the first place was due to a miscommunication with the receptionist on the phone (which was their fault, not mine – and yes, it was a different receptionist at a different place). To her, I was literally a waste of space.

My family thought I was a pessimist growing up, and they still do. They think I only think about negative things. I think about negative things socially because they are most likely to happen to me compared to a non-autistic person. And I’ve always known it. Since I was a kid, I thought I just had bad luck or that there was a cloud following me around all the time. In reality, it was stigma. Stigma, assumptions, misinterpretations, confusion, neurotypicalism. I was a wonderful backboard for other people’s projections, with my “quiet demeanor” and blank expression. It wasn’t me, it was society. I am not a pessimist. I may be a realist, but I am not a pessimist. And I have a surprising amount of hope for change and autistic acceptance, more than most people would expect from me.

Unfortunately, part of that change comes from taking our masks off, when we can (for those who can), and subjecting ourselves to the harsh reality of what other people think about us. And hopefully, we can slowly remind people that we’re still human beings, even if we don’t look you in the eye, even if we might only whisper or shout, and even when other people act like we are less human than they are.

 

 

Kid with a medical mask on looking into the camera. Photo by Janko Ferlic on Pexels.com

SideNote: And you may think, oh, I just have a problem with that Subway, or I just have a problem with receptionists! If that’s you’re take away, then you probably aren’t autistic! There are subtler things, but I find them difficult to describe. There are ways people look at you. There are ways people talk to you, possibly condescendingly, but trying to pretend otherwise. There are ways people gesture (or don’t gesture) towards you, and people who playfully tell you that you need to “lighten up” or that “you’re boring” (in a bit subtler language than that, but still quite obvious). There are people who will befriend you, and once you get comfortable with them, and start having interesting conversations,  will gravitate away from you. There are people who will befriend you and only know the mask you put up, and eventually break your trust and you will snap at them, and they will not talk to you anymore. And honestly, maybe you don’t want to talk to them.

This is the frustrating part:

It’s not that these were malicious events, or even conscious. One person just wanted me to “have fun.” What her fun was to me, was frustrating and annoying and pointless. But I hid it so well until that frustration boiled over and I’d had enough of NT frivolity and sensory bombardment. There are often subtle social cues that I pick up which seem like “harmless” social interactions to NTs, but I can tell. I really can. And if neurotypical people think autistic people don’t understand social cues, or empathy, they will unfortunately inevitably treat us as less than human. I find the only way around this to be education. I hope that they are listening.