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I was formally diagnosed with autism at age 44. While I’d known for years that I was autistic, receiving the formal diagnosis was important to me because it gave me a sense that I could “claim” the only community that ever felt like home. Like most autistics, I support self-diagnosis – “when you know, you know” is a comment I’ve heard from many autistic people – but at the same time I was impacted by claims that being autistic is a trend and by concerns that labeling myself as autistic was inappropriately encroaching on a space that should only belong to those with more externally apparent support needs.
In the series of blog posts to follow, I hope to help people outside our community understand why receiving an autism diagnosis can feel like being told “welcome home.” I want to address the issue of self-diagnosis, the idea that being autistic is “trendy,” and what I believe are valid concerns that those of us with more access to verbal and written communication are unintentionally erasing the presence of those in our autistic community who don’t have the luxury of writing a blog post.
Autism and Isolation
To communicate any of this, I need to start with the concept of loneliness. The Greek word autós means “self” and early descriptions of autism focused on the idea that autistic people had withdrawn into their own worlds, into themselves. While there is also a lot to unpack with the early conceptions around autism, I still believe that – at least for me - there is a core truth in the idea that autism often involves a sense of profound isolation from the external world.
On My Own as an Adult
In my 20’s I moved to Seattle alone. Late at night I would wander through the city, walking by the water, past bustling bars full of people spilling out onto the sidewalks, drinking and laughing and smiling. I’d walk past houses with warm, glowing warm light pouring from windows that framed silhouettes of the people inside. My heart ached to go inside. I wished for a warm square of light where I’d belong, to climb up a set of stairs and open the door to home.
I found a lonely corner of the city – the edge of a parking lot that looked over a steep hill – and in the middle of my walks I’d find myself on the edge of that hill, kneeling down, sobbing silently. I’d dig my hands into the gravel, rocking back and forth on my heels, my chest gripped with a pain that seemed to squeeze the air out of me.
I’d left my childhood religion and been cut off from my family and community as a result, and in those early days of isolation I thought that was responsible for my pervasive loneliness. I believed isolation was something I could work my way out of. After all, I used to tell people “I’m not smarter than anyone else, but I can work harder.” The rigidity and hyperfocus of autism can also manifest as an iron will, dedication, and intense drive when it comes to things we deeply care about. As painful as it was to have my past wiped away, I still had a future. Through sheer power of will and through work I would create my own home, my own family.
As painful as it was to have my past wiped away, I still had a future. Through sheer power of will and through work I would create my own home, my own family.
Knowing I had no backup, I was strict with myself. If I fell into depression or anxiety, no one was going to save me. Homelessness was always at my door, one missed paycheck away. I worked and went to school during the day and evening, wandered the streets at night alone and crying, on endless repeat. After a few hours of sleep my alarm would go off, and I would tell myself: “no one will save you. You can't fail. Get up. Now. Get out of bed. Go to work. Now.”
Small things brought comfort. A handful of songs played over and over. A night-blooming jasmine that filled my basement studio with its scent, and reminding me of the Mrs. Pollifax mysteries that my grandma had introduced me to. Reading and writing in a coffee shop, surrounded by strangers who didn’t notice me but whose presence allowed me to feel some sense of being in a group rather than always on the outside.
Back then, I still thought it was only a matter of time until I would have the sense of connection that others seemed to access as a matter of birthright. I didn’t know it was more than circumstances that left me feeling isolated. I didn’t know that in the presence of neurotypical people, I faded into the background, almost unseen by those around me. I didn’t know that when people would notice me, it was either because I’d made a social error, or because I happened to have some knowledge that they needed, or because my life was so bizarre that I was a momentary object of interest.
I didn’t know that in the presence of neurotypical people, I faded into the background, almost unseen by those around me. I didn’t know that when people would notice me, it was either because I’d made a social error, or because I happened to have some knowledge that they needed, or because my life was so bizarre that I was a momentary object of interest.
Social Errors
The neurotypical world has endless rules around what is appropriate to share and when, and how to say those things. Autistic people don’t think this way until taught to do so. When I was four or five, another little girl in church told me people thought I was stuck up because I used big words. I remember being so confused and upset. I wasn't stuck up; all I wanted was to fit in. How did using short words make me a nice person and long words make me stuck up? That using complex or uncommon vocabulary words was perceived as flouting education to demonstrate a higher status was well beyond my comprehension.
When I was four or five, another little girl in church told me people thought I was stuck up because I used big words. I remember being so confused and upset...that using complex or uncommon vocabulary words was perceived as flouting education to demonstrate a higher status was well beyond my comprehension.
My natural communication style is to vacillate between speaking either not at all or for two hours straight. I don't think about the social implications of my words, but only the accuracy of their content. Unfiltered, my words come out too rapidly and intensely; paradoxically, when I see someone I love deeply hurt - especially if I was the one who hurt them - I've been told my words and tone become flat, "clinical." In the moments I most need to reach out, connect, and heal the hurt I've caused, I find myself caught in a swirl of emotions internally, trying to filter them, trying to find the words, the expressions, the right mix of something that will tell the other person I'm sorry, and I love you, and I want to fix this. What they see on the outside is me staring at them, seemingly unaffected by their pain.
There are people I’ve met who grace me with allowing me to be myself. They check in and offer support. They forgive long periods of silence between connections, the way any conversation is likely to veer into monologues on esoteric research topics, the way I must remind myself to come out of my own head and back into presence with them. My lack of social reciprocity makes it seem like I don’t care. I have two blank cards on my desk for birthdays long passed. I speak to my best friend of twenty years once every month or two.
In yet another demonstration of my failure to understand typical ways of demonstrating social reciprocity, I used to give away gifts from friends instead of keeping them myself. I would often tell the new recipient how much the gift meant when it was given to me and why the original giver was so important in my life, thinking I was honoring the person who gave it to me. I was sad to not have the gift anymore, but it was worth it to know that both the original giver and the new recipient would feel so happy. I thought the original giver would be excited to know that not only had they made me feel loved, they'd also made another person feel cared about. It never occurred to me that anyone would be hurt that I'd given away their gift until a friend told me "I'm not giving you any more gifts because you just give them away to other people."
Masking
As I grew older and the list of mental rules for behaving appropriately began to pile up, I swung from the epitome of decorum and professionalism to total meltdowns and back again. People would tell me that I just needed to calm down, relax, have fun. "Don't be so serious." What they didn't understand was that I knew I would mess up and lose friends if I didn't filter and monitor myself constantly. I often thought about the right way to sit, stand, arrange my facial expressions, listen, nod, and ask the right type of questions. At the same time, I was losing connections because I was seen as too uptight and anxious. Over time, the mask of appropriateness became so fused to my core that to this day I can't calm down unless I'm totally alone.
People would tell me that I just needed to calm down, relax, have fun. "Don't be so serious." What they didn't understand was that I knew I would mess up and lose friends if I didn't filter and monitor myself constantly.
What's Next
In future posts, I’ll talk more about my efforts to break out of the loneliness I felt in early adulthood, some disastrous social interactions in graduate school and the workplace, and striving for a balance between my natural communication style and what the external world demands of me in order to be accepted.
More and more of us are finding our voices, are claiming our space, are claiming our community. For those of you who read this and resonate - self or formally diagnosed or simply knowing the neurotypical world never feels safe - please know that across the miles my heart is here, open, grateful for you. Maybe we can save the next generation from the pain that has engulfed us. My hope is that as we risk unmasking, we may find the connection with each other that our hearts are longing for.
Accessing Community Yourself
If you are feeling lonely, isolated, and in need of a community that understands you, feel free to reach out. We offer individual and group support and education about neurodivergence; access to a private, moderated Discord server; and guidance for handling the practical challenges we all face. You can request a no-cost consultation by filling out our contact form or emailing schedule@facilitatejoy.com