I was hoping to write and publish this article in time for Autism Awareness Month (April), but COVID-19 and my chronic health issues had other plans. I’ve been thinking a lot over the last year about how neurodiversity played into my drive to become a writer, how it affects my use of language and why I’m proud to be a neurodiverse author.
Putting Things Into Perspective
Imagine that all you’ve ever wanted your entire life is to be understood and accepted. Now imagine that you’re a person with a rich inner life filled with wonder and ideas and stories and powerful emotions you’re dying to share: However every time you try, your thoughts become jumbled and nothing ever comes out right. People laugh at you every time you try to connect. On the rare occasion you think you’ve actually made an important point, you’re summarily dismissed, or your words are met with derision. Strangers frighten you. You feel embarrassed when they look at you, when they ask you to speak. You don’t understand why people don’t see the real you. Surely they’d like you if they did. Your own siblings don’t even want anything to do with you.
When you do get comfortable enough to start talking freely, friends ask you if you ever shut up or yell at you for saying the wrong things in company. You hear complaints like “Jesus. You can’t talk like that in front of my parents!” You’re told to “get a filter,” or “just shut up about it already,” but you can’t quite figure out what you’ve done wrong. Kids put tacks in your seat, signs on your back or mimic your awkward shyness.
Imagine that you then discover there’s a way to be heard, to be truly understood in a way you’ve always craved. People seem to like you and hear the meaning behind your words. It feels like magic. You don’t understand why when confronted with a blank piece of paper, the words simply flow forth. Given the time and space, you can finally speak all those things denied for so long. They make sense. They even sound good. You get praised by your teachers for the poems your write, the journal you keep, the essays you cobble together.
You get more courage and decide to share these writings, if under the cover of a pseudonym on a burgeoning internet. People respond. “I feel the same way,” they tell you. “I never thought of it like that, but it makes sense,” they say.
Still, when you speak, you’re met with criticism. You’re still dismissed, hurried and harried. You start in the middle, or at the end and confusion ensues. You’re criticized for being too slow, too thoughtful. “You take so long to respond to anything. People might think all you do is lie,” someone says to me. Later you realize it’s their covert way of saying they don’t trust me.
You’ve been told you’re stupid so many times, you long since assumed it’s true. But you discover when you write, people tell you how clever and inventive you are, or how much your words touched them. You feel like a fraud, like a fractured being, like a person who’s only worthy of human interaction through writing.
Imagine not knowing how it is that you’re different, despite being told you’re different at every turn (always with the insinuation that different equals less). You can never put your finger on it. How can you have failed so desperately in grade school and seemingly at life, then turn around and graduate college with honors, winning award after award for your academic writing?
That was my life; a confounding knot of contradictions of which no one could ever make sense. Now imagine finally discovering, through the writing of others, that there is a reason for these differences and it has a name. It’s exciting to finally know, yet disappointing and scary, because it’s one of the most misunderstood and maligned conditions of our time.
Discovering I’m Actually Autistic
Autism was no stranger to me and yet I had never suspected it could explain so many things about myself. My stepson is a high functioning autistic and though I marveled at the similarities between us, I simply thought they were intersections most people share regardless of whether they are neurodiverse or neurotypical. But that wasn’t all that was at play.
It sounds astounding to make it to the age of 47 without one of my many teachers, professors or psychologists discovering my autism in the face of the number of rising diagnoses over the past two decades. Teachers and therapists are being trained to detect it and diagnosis has come a long way. Unfortunately, that’s only been for boys.
There’s an assumption that girls rarely have the condition, but there’s a growing pool of evidence that the condition is just as prevalent among females as males. The most prevalent problem is that autism looks a lot different for girls than for boys. Autism characteristics vary greatly among the sexes, news which seems very slow to reach the people qualified to detect or diagnose it. To learn more about these key differences, visit “Am I Autistic? Women, Autism & the Issues of Diagnosis” on my health and wellness site, The Zebra PIt.
This has left many women out in the cold, unable to access the assistance boys receive, which largely evaporates after the learning years. Why? For one, people think autism is a childhood disease, a learning disability we grow out of. It is not. While it’s true we tend to mature at a different rate and maturity can benefit us and our communications significantly, our brains don’t suddenly begin to work like a neurotypical brain. Additionally, we have accumulated trauma from years of bullying and rejection by our peers, teachers and families. While we learn some of the hard lessons that make us more acceptable to neurotypical minds, the social aspects of our lives rarely become much easier.
If diagnosis isn’t made until adulthood, we are still left to fend for ourselves, to flounder along in life subjected to a ridicule we can’t begin to understand for the differences in our cognition, perceptions and interaction with the world and others. Once women stumble onto the discovery of what it is to be autistic and female and manage to match those traits to our own, we’re often still denied diagnosis and treatment. Those doing the diagnosing still don’t understand what autism looks like in women, who excel at masking our faults by mimicking our neurotypical peers.
Without diagnosis, we miss out on valuable services in education, in the workplace and in the care of our mental and physical health. Autism is not a learning disability, it’s a way of being and thinking that’s ill-suited to the way our society, our educational systems and our workplaces function. Adults who are diagnosed deserve the help and services we need to live our best lives and achieve those successes we so desperately hope for. Even more than that, we need people to accept that different does not mean less.
How Autism Influences My Writing
I realize now I came to writing from a place of desperation, a need to be heard. I thought that need was because I was abused, bullied and shunned. I explained it as a drive to be a voice for those who could not speak for themselves when asked in college. Now I know it was myself I craved to speak for most of all. I suspect I am not alone in that.
I suspect many autistic children, whether diagnosed or not, find a way to communicate the richness of their inner lives and imaginations through writing or art. I suspect many of us come to love acting, as well. Take for example, Anthony Hopkins and Dan Aykroyd. For those of us who survive and flourish, acting is likely how we accomplished it; on creating an illusion pleasing to the neurotypical mind so we could gain some level of acceptance. It’s easy to see how an expert at masking could make acting a special interest and career.
Being denied diagnosis is to be denied the key to who we really are. We are not our condition, yet how we see the world, how we communicate and interact with it and how that world sees us is all predicated by our neurodiversity.
Knowing I’m autistic and what that means for me has made me a better human being and a better writer. It’s helped me to make sense of impulses I’ve had to fight my whole life, like sounding and acting an awful lot like a walking, talking encyclopedia, not to mention my utter failure at small talk and why I loathe it so much to begin with. For the first time, I can better see my faults. Perhaps more importantly, I can also accept them and address them more easily now.
Knowing who I am and why makes me a better writer. With the self-insight diagnosis has offered, I now recognize and can tame some of those things which others might not like in my writing and other communications. I can quell the desire to include every fact, thought and idea on a subject and cut out more of the chaff. I finally know why I can describe things quite well and yet cannot picture things when they are described to me in books. I know now that’s how my neurodiverse brain works and that’s okay. I also happen to excel at reading diagram examples.
It also helps me recognize the special relationship I’ve always had with language; why my brain loves alliteration, rhyme and meter and why the rhythm and devices of poetry brought me to my love of literature well before the long form ever garnered my respect, despite my avid curiosity about the world and the human condition.
I now understand why certain phrases get stuck on a loop in my head. While it’s largely natural for me, it can wear on others. My brain loves order and repetition and poetry can provide that for me. It fuels me with a rhythm for my life. I also know I have to be careful with these obsessions, known as special interests, in my work because while they delight the hell out of me, they can wear on neurotypical minds.
Poetry suits my neurodiversity and its obsessive nature. While it’s widely accepted that most poets write obsessively on the same few subjects, it’s a drawback in fiction and non-fiction writing. Poets are forgiven for their long held dalliances with certain types of imagery as well, while fiction authors are largely criticized for such things.
In fact, it’s often considered a boon for a poet to have one or two subjects on which they write over and again. Dickinson without her obsession with death simply wouldn’t be the Dickinson we know and love. I wouldn’t doubt any one of my favorite poets to be on the autism spectrum. Eccentricity is expected; welcome, even.
My other favorite mode of writing, the essay, also gives me much of the manna my neurodiverse mind craves. Facts, facts, and more facts, please! I love to learn. More than that, I love to communicate what I’ve learned to others, and I excel at it, generally speaking.
The autistic mind is a fascinating one, be it largely misunderstood by family members and strangers alike. The fact of the matter is that while many people assume autistic people can’t speak for themselves, we’re more than capable of doing so. This list of 176 books by actually autistic authors should prove that, but keep in mind most of these books are pertaining to autism and the autistic experience. Don’t be fooled, though. We write on a plethora of subjects in every genre and form that exists. Why we aren’t more public about being autistic probably lies in the fear of stigma.
Stigma Associated with Autism
I no longer feel any shame about my neurodiversity, now that I understand what it is. In fact, I’d like to celebrate it. There are many positive things about being autistic. I wouldn’t change how my mind works if it was possible. This has helped me to realize there’s nothing wrong with me or how I’m made. The problem is with how these differences are perceived by the neurotypical majority.
It would have been nice to know a lot earlier, though. Would it have saved me from the stigma I experienced? Probably not.
We like to think of the stigma being attached to the diagnosis, but the truth is a neurotypical brain will sniff us out without the label through our shyness, social confusion, and our not-so-socially-acceptable-behavior. That’s why I advocate for acceptance and an expanded understanding of what autism is. I would like to think that diagnosis would have helped me to cope and learn from these issues and experiences. That it would have helped me figure out and accept who I am at a much earlier age, saving me decades of pain and frustration.
I believe in being transparent about my condition and not because I hope people will cut me some slack when I inevitably pop off a wild, socially inappropriate comment. I believe in disclosure because it helps to educate others and normalize the condition.
Autism is not rare. It’s estimated that 1 in 49 people are on the spectrum and I suspect it’s even more common than that, given how often we’re missed. We need transparency. We need allies. We need to normalize neurodiversity because as foreign as it may seem to the neurotypical mind, it’s in no way rare or wrong. There’s no need to save us or change us. What we need is acceptance and a willingness to make this a world where both the neurotypical and the neurodiverse can live in harmony.
On a final note, please understand this is how I see my autism and things I’ve discovered about myself. It may not fit with every other autistic person on the planet. Autism is a spectrum disorder, meaning how it affects one person to another can vary greatly. Don’t assume just because I feel one way about something that all people with autism feel that way or have experienced life similarly to my own. I am by no means the poster child for autism. Thank you.