[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).]
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
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.
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?
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.