At the university I teach at, I am currently mentoring one of my former students on her thesis project, and I went to see the poster presentation she created based on her research. When I arrived, she had a crowd of students circling her, so I wandered over to some of the other posters.
As I was looking at a poster on polycystic ovary syndrome, I overheard the conversation of two students regarding the poster next to me on autism. The poster detailed how the university has an outreach program for teaching autistic children American Sign Language (ASL) in order to help them communicate if they don’t speak. Something I’m excited they’re doing. For it’s not that autistics who don’t speak don’t know how to communicate, they just may need an alternative to verbally speaking. There’s a reason social media has been so popular in the neurodivergent community: it has given those who don’t always speak a way to enter into the conversation. To communicate. So ASL could be even another way to communicate. And not only is ASL a visual way, but it’s socially acceptable too.
As someone who suffers from multiple neurological disorders, I know there are many times I am unable to verbalize my thoughts. I say the wrong word or only say part of what I mean, leaving the person with whom I'm speaking confused. And because sometimes spoken words escape me, I am often at a loss for how to explain what I mean. But I can write what I mean. A tool that has not only helped me understand what I’m thinking and feeling but that has allowed me to communicate better with others. And I'm very thankful for texting. I prefer texting to talking on the phone and sometimes even to talking in person.
My husband and I text each other even while sitting next to each other when I’m having a difficult day. Something I wish I would have thought of years ago as speaking has always been something I’ve had to prepare for, and if I don’t prepare, I often find myself at a loss for words. And everyone deserves a way to communicate with others that’s more natural for them. Even if it’s not the socially acceptable, or normal, way.
The Conversation I Overheard on Autism
But back to the poster presentations at the university. Here is the conversation I overheard the two students next to me having while standing in front of the ASL and autism poster.
Student 1: My brother has autism. It’s really cool that they’re teaching them [autistics] sign language. My brother should learn it for when he has a hard time speaking.
Student 2: Why does he have a hard time speaking?
Student 1: My brother is smart, but he has a difficult time verbally communicating his thoughts. There’s a word for it [pause] something disorder. His doctor has autism and this disorder too and it means you’re really smart but you just can’t speak.
Student 2: Does your brother have a learning disability?
Student 1: Yes, he does, but only with his speech. He's really smart. He’s high functioning. You can be really smart but have low social skills.
Student 2: I don’t think that’s possible.
Student 1: Would you rather be highly smart and have a difficult time being social or be social and have a difficult time being smart?
Student 2: I’d rather be social with a difficult time being smart. Because at least then I could get by.
Student 1: But social skills can be taught.
Student 2: I don’t think so.
Upon hearing Student 2’s last comment, it took everything in me not to jump into the conversation, but I realized that it wasn’t appropriate for me to have overheard so much of what they were saying and to then interject. A social skill I’ve picked up on.
The students’ conversation touches on some of the stigmas of neurodiversity, specifically of autism. The assumptions that the brother had a learning disability just because he can’t always speak. That someone “has autism” and “has a disorder.” That social skills would even need to be taught rather than it being acceptable that everyone is different and that there shouldn’t be all these social rules to follow. Rules that are confusing and overwhelming. Rules that add to the millions of things the neurodivergent have to do just to get through the day. All the things we need to do to regulate and to stimulate. To calm and to communicate. To survive.
My Social Experience the Next Day
I attended a party for work the day after overhearing the students’ conversation, and I found myself feeling anxious for hours before going to the event to the point where I was debating whether or not to even go.
While I have found ways to be social with friends and family for short periods of time, and while I think I get along well with my colleagues at work, having to socialize with coworkers outside of work crosses over the two categories: I can’t just be social like I am with friends and family, and I can’t just be professional like I am with colleagues at work. I somehow have to do both. A concept that makes me completely uncomfortable and makes me so anxious and overwhelmed that I feel sick for hours before and after I go. I have a difficult enough time socializing as it is, but I try to participate in something social for work at least once or twice a year so that I stay connected to the culture in my department. So I went.
My husband was with me, which is always a good buffer, but I felt so awkward and uncomfortable while there. The amount of unprepared speaking I was going to have to do was daunting. I didn't know what to say. I was worried I would get too comfortable and say something inappropriate to a coworker or that I wouldn’t be regulated and would get too loud. Need to put my sunglasses back on. Lose track of what someone was saying. Get lost in the sounds in the room. I am also never comfortable starting or stopping conversations with people in social settings, and I never know which topics are okay to discuss, so I stay on the surface, which is a place I hate to dwell. It makes me feel fake. Because for me it is.
I want to really get to know the person I am communicating with — their hopes and desires. Who they are and what they're all about. I don’t care about most of the social pleasantries people discuss and it takes so much of my energy to pretend like I do. It has never seemed acceptable for me not to, and masking is sometimes the better of two evils, so I put on my mask and play the game.
Then I told a new colleague that her little girl was adorable, and my colleague responded that her child was a boy. She was very kind about it, telling me that people make that mistake often and how she just can’t seem to cut his hair quickly enough, but I wanted to launch into a conversation about how I wish we had more gender-neutral terms. How I didn’t even like assuming her child was a girl, even if she was born female. But my colleague was struggling to keep her child from running everywhere, so I at least sensed that this conversation would be ill-timed. That and the fact that I wanted to crawl into a hole for even saying, Girl, instead of something more neutral like, Child. Assuming gender is something I try not to do.
And after I left (feeling incredibly uncomfortable that I followed my husband’s lead and hugged people goodbye), I couldn’t help but think of how nice it would have been to not have to worry about any of that. To just be accepted for myself — not talking, perhaps signing or texting instead, observing instead of engaging, launching into deep topics whenever I saw fit, rocking in the corner with my earplugs in and my sunglasses on, not hugging people — crushing social norms and no longer needing to care.
Why We Should (Continue to) Challenge the Norm
Even though I’ve shared that I have neurological disorders with my boss and colleagues, I still felt the need to mask while there and left wishing I didn’t care so much about fitting in. About being normal. What does being normal even mean anyway? If it means to act as everyone else does, I already don’t do that, nor do I want to. So it begs the question: At what point will things, specifically social interactions, stop being the norm?
To me, this is part of what The Neurodiversity Movement is all about. Having these conversations. Challenging the norm. Being ourselves. Finding more ways to communicate. Sharing our experiences. And not letting anything stand in our way.
This story originally ran on Psych Central on April 5, 2019. Since Psych Central has been sold, the link to the original is no longer available.
Photo by Edu Lauton on Unsplash