My Autism & Neurodiverse Story
An abbreviated version of the story below can be found in this Instagram post. I do explore my diagnostic journey as well as resources to a more comprehensive degree below, so if that's what you have time and inclination for, please read on!
The day I received my diagnosis, my assessing psychologist smiled kindly at me as he splayed my test-results on the polished desk dividing us. "I want you to know something. You are not wrong. You are exactly who you're made to be. It's just a little more difficult here for you than it is for others. Because on the day you were conceived, the code that began to create you sent a different message as you were knit together. This code prepared you to be born into the dark, quiet magnificence of deep space, not this colorful, chaotic, noise-infused subtextual planet we live in. Your strengths are different from many, and your struggles are different too. But this world is more beautiful and brighter because it has people with autism. You bring so much to our world, but we tend to make it a difficult place for you to be a lot of the time."
I was thirty-one.
Girls are diagnosed with autism spectrum disorder (ASD) three to four times less frequently than boys. For a long time the scientific community believed this is because boys are somehow genetically more likely to have ASD. Research is now beginning to show that as with many other areas of society, including medical care and diagnostic best practices, gender biases infuse and blind us to accurate assessment, evaluation and thus proper understanding. I can only say that I know personally how devastating that has been for my life to spend three decades knowing in my bones I was "different", existing as if outside a thick layer of plexiglass keeping me from assimilating and belonging how I ached to, with no concrete explanation for this. No help, no recognition. No support or coping skills.
From social struggles to "fit-in" with girls (guys are so much easier to talk to, still for me), my often blunt, direct manner of speaking, my incisive questions, my emotional responses to things people find very odd to be emotional about particularly so abruptly, my sensitivity to crowded places, sudden noises, unexpected smells or changes in plans, autism makes my life hard in a lot of ways. Being diagnosed as a woman rather than a girl, hitting my autistic burnout point means I suffered in silence for a long time.
"Sit still. Don't bounce and wiggle."
"Toughen up. Why are you crying about this?"
"It's just a tag, Chloe! Seams are uncomfortable sometimes; deal with them."
"That's a really rude question."
"That's none of your business."
"I don't like busy places either, but I suck it up and show up."
"Why can't I just blast my music? What's the big deal?"
"You're so sensitive."
"You're so practical about this. Where are your feelings?"
"Why are you so literal?!"
"That's so...interesting you don't wear makeup."
"Why aren't you more dressed up?"
"Why are you playing with your hair like that?"
"Why don't you look me in the eye?"
"Why are you staring?"
"Why aren't you having fun?"
"You look mad, why is your face like that?"
"Wow, you use really big words."
"You're like a super nerd."
"You're so intense."
When I was told that who I was, was unchangeable, that autism is how my brain works and my neurodiversity was an explanation for so much of what I struggled with, I felt a magnitude of relief that I truly can't describe. Because for the first time, I got to see the beautiful silver lining in the traits that people often criticized. Yes, all of those critiques above and comments bear some weight of truth. I do fidget, I ask blunt questions, I either stare too long or don't meet your eye. I don't like makeup or bras, I'd love to be a nudie if I could, I play with my hair, I jump at sudden noises, and both buttonfly jeans and fluorescent lights make me cry.
But I also weep at the beauty of a sunset. I feel a transcendent peace when the wind kisses my skin and I wander through the trees. I'm blindingly happy when I get to float in water and feel rain dropping down from the sky. I come up with stories about people who've felt alienated and lonely like me; I can hear an accent or phrase once and mimic it brilliantly. I make people laugh and loosen up and talk socially finicky and morally grey issues without feeling cornered or taboo. I hear children and people in distress long before anyone else does. I smell smoke first. I ask questions no one else has and in doing so make myself a safe space for people in my life to be brutally honest. I hug fiercely, love loyally, and do what I say I'll do.
That's autism too.
The outside world has always felt like a puzzle I could never put together, the riddle I would never solve. I tried so hard to get it right. But I never did. And being diagnosed with autism means I'm never going to "get it" that way, the neurotypical way. It's not that I can't learn and mimic and to a degree assimilate; I can. I just do much better making subtle adjustments, not sticking myself in horribly difficult environments too often, and surrounding myself with people who know the real Chloe and like her for who she is. The one who's all of those traits that make me me, a neurodiverse woman who's balancing being herself while striving to be a better speaker of the language of neurotypicals.
And now I have a little girl whose seams and tags drive her nuts. Whose socks feel funny and who lives for Target's super soft joggers with a drawstring waist. Who needs to know her schedule down to the minute each day. Who gags on foods that I've barely learned as an adult to chew quickly and painfully swallow. Who closes her eyes and twirls in the breeze, just like me. Who cries tears "because I'm feeling things, Mommy." I know I'm not going to let her be crushed by a world that demands assimilation and conformity. I won't let her be told that "maybe there'll be a cure for your kids if they have ASD." I'm going to teach her how to love her difference, to temper herself in healthy and sociable ways but never at the cost to her authenticity or her mental and emotional health. I know how to love her better because I've learned how to love myself. As a woman with autism.
Autism is often not easy for me. But I am resilient because of what I have learned to survive and accomplish with the strengths of my neurodiverse mind in a neurotypical world. And as much as I wish life were easier, I will never wish myself different.
I'm sharing this story because I'm done living the rest of my life camouflaging who I am, masking my autism. I never did it knowingly, and since my diagnosis, I've been working to understand who I am when I'm not contorting and hiding myself to fit in. What autism looks like for me is individual—I don't claim to speak for anyone else's experience of ASD—and I'll continue sharing its triumphs and its heartaches in my life. I hope this is a resource for those seeking to understand a woman's experience of autism, whether you love someone with ASD, you're wondering if you have ASD (I commend you to not only self-diagnose, but go see a licensed professional, and if you're not satisfied with their assessment, see someone else. Clinical diagnosis offers you a host of legally protected accommodations, and necessary resources), or if you simply want to better understand this sliver of the population that works differently from you. Because you need to be learning from Own Voices. Women and Men with ASD, lovers of those people and parents of children with ASD, are valid resources for sharing their personal experience of autism. Please please have a critical mind when you hear or read a story—fictional or otherwise—about a person with autism from someone who does not have ASD. The dangers of any group of people being stereotyped, appropriated, exploited, and made into a trope is insidious and deeply painful to those of us who've gone through this.
This matters to me; I've read horrifying fiction and nonfiction about autism from people who have no business writing when they've done so little to learn from those who live it. And because my diagnosis journey began with reading an Own Voices story by a woman brave enough to share her journey with autism. Not just her journey, but to write a love story that showed me I could be exactly who I was and adored for it. Helen Hoang's The Kiss Quotient (TKQ) was the first romance I read where a woman was so much like me. I devoured every page, shocked that this was "okay"; Stella stimmed, she was blunt, she wanted sex but didn't know the first thing about going about it comfortably or to any degree of satisfaction; she loved objectivity and was deeply curious; Stella was me in so many ways.
When I finished TKQ, I found the clarity and courage to seek diagnosis, all because a woman was bold and vulnerable and empowered in her autism story enough to share a fictional world where autism belongs, struggles as it truly does in real life, but also finds its resilience and home in the hearts of loving, accepting people. I'm a firm believer that you need to be the change you want to see in the world. So here I am, sharing what autism has been and is for me, hoping you hear how proud I am to be who I am, how hard it is some days, but how grateful I am to have been born that little girl perhaps meant for the deep dark quiet of space but who instead found her place in this wild, enigmatic world we call ours.
Autism & Neurodiversity Resources
Here are some highly recommended autism resources endorsed and informed by the neurodiverse! Please take their critique of organizations, verbiage, and attitudes seriously, even if it makes you uncomfortable. As with any marginalized group, there are often nonrepresentative voices trying to speak for us. To make true gains in autism and neurodiversity acceptance and understanding, the neurodiverse themselves must be given the platform, open ear, and respect they deserve to inform others:
- Autistic Self Advocacy Network: Nothing About Us Without Us
- Autism diagnosis discrepancies between boys and girls explained (hint: it’s socially upheld & medical gender bias, not genetics)
- Spectrum News: In particular, "The Cost of Camoflauging" and "Women with Autism Hide Complex Struggles Behind Masks"
- Healthline Article: "Why I Fake Being Normal"
- Child Mind Institute: "Why Do Many Autistic Girls Go Undiagnosed?"
- Fiction: The Kiss Quotient, The Bride Test, The Girl He Used to Know, and The Madness of Lord Ian MacKenzie
- Nonfiction: 22 Things A Woman with Asperger's Syndrome Wants Her Partner to Know and Aspergirls: Empowering Female's With Asperger Syndrome. Also, Funny, You Don't Look Autistic. On my To-Read that looks promising: NeuroTribes