Three Words Changed The Narrative of My Life After I Could Finally Say Them
These words were not easy to say.
I wrote the most personal story I’ve ever written a month ago. I sat down at the kitchen table to write after midnight. I didn’t have any plan on what I wanted to write. I just wanted to write. I started by reading a story about a woman in her late-30s being diagnosed with autism as an adult, and I knew instantly her story was mine.
Nearly every detail in her story was identical to my life. I was the male version of this woman, and it was a revelation that had been coming.
My wife has been telling me for a few years that she noticed autistic traits in me, and I’ve been noticing that I shared many of the same traits as my teenage son who is on the autism spectrum.
But I hadn’t gotten to the point of saying, “I am autistic,” until writing my story.
I typed those words in my story and it felt like they fit me, and the rest of the story flowed from observations that I’ve been making about myself from reading other stories about people undiagnosed until reaching adulthood.
Like feeling sensory overload when I am around too many people for an extended period of time.
My life narrative changed
I hesitated to hit publish after I finished my story because there is a stigma associated with autism in our society. Most people don’t know much about autism beyond the Raymond Babbitt savant character in the movie “Rain Man,” and their main view of autism is toddlers being diagnosed with autism because our society has finally began to recognize characteristics of autism.
Autism is a spectrum disorder where no two individuals are alike. People diagnosed with autism may share some of the same traits, but there are people with mild, moderate or severe autism, and many with mild autism may not even be aware they might be on the spectrum.
It’s not a bad thing, either. Most of the traits I consider to be my strengths such as laser-focusing on one task for hours are autistic qualities.
I knew what I had written would change the narrative in my life. I knew it was true, and it would alter the way I saw myself, but I wasn’t quite sure if I was ready to change the way others saw me? That’s what made me hesitate.
But I’m a fast thinker. I hit the submit button to The Memoirist after thinking for five minutes. I don’t recall exactly what I thought about in those five minutes — it was 3 a.m. — but I’m sure it had to do with how my family, friends and co-workers would respond to my disclosure.
I could’ve chosen to keep it to myself, and no one would know because I’m good at “masking” my autistic traits to fit in with others. I was so good I didn’t realize I was doing it for 52 years. But I knew I couldn’t fool the deeper part of me beneath the surface that realized I had to share my truth.
I decided to share my story because I want to own who I am and, ultimately, I figured if my story helped one person understand themselves better the way Serenity Jean’s story helped me understand myself better then I wanted to share my story.
Difficulty telling others I’m autistic
I woke up the day after my story was published, and it was just like any other day (wake up, shower, get dressed, eat breakfast, etc) except I knew I was different because I had shared this knowledge about my true self with the world.
I chose not to tell my wife, family members, or anyone else. It was my own little secret. I have a hard time if my wife asks too many questions or if she questions my actions. It causes me to feel sensory overload, and so I didn’t tell her about my story — but she already knew I’m autistic.
Was I still getting comfortable with the word autistic? Maybe. In his book On The Spectrum, Daniel Bowman Jr. describes how hard it was for him to share with his colleagues for the first time about his diagnosis at a speaking event:
“Oh how that first line, “I am autistic,” got stuck in my throat as I stood at the podium and faced my colleagues. Then I had not other choice. I said the words. I spoke them with a tremble.”
I haven’t told my mom. I found out this isn’t uncommon for people diagnosed as adults. According to a study, only 40% of adults diagnosed as adults choose to disclose their diagnosis to their extended family, although most reveal their diagnosis to close friends.
So the month after I wrote my story was anti-climatic because I kept it a secret to those who know, but that changed when I decided to share a link to my story on Instagram and Facebook to promote my story for a writing contest.
Coming out on social media
Sharing my story on Instagram wasn’t a difficult decision because most of the people I follow are families with kids on the spectrum, and people are open about details of their lives in a way that’s not the case on other social media.
I’ve found a supportive and welcoming community of autism families on Instagram, and though I didn’t get as many comments as I’d hoped, that’s because I haven’t posted regularly on Instagram recently to stay connected.
Facebook is different. I never felt comfortable talking about autism in the past because it felt like my family was so different than all of my “friends.” In the past I felt like if I wrote about Autistic Life no one would care or understand.
Telling my face-to-face friends wasn’t as hard as I imagined though. I typed the words I wanted to say and copied and pasted the link as quickly as possible because I didn’t want to chicken out. And it or I was out there.
I hesitated for only a minute before copying and pasting a link to my post — but it was a relief to share my true self with my friends. I felt like I helped to spread awareness and acceptance towards neurodiversity and autism by people hearing about autism from someone they know.
And of course I wanted to show acceptance towards to myself, and I’m sure it wasn’t that big of a deal to most people. They clicked like and moved on.
Closing the neurological gap
Surprisingly, I didn’t receive any awkward comments like “you don’t seem autistic.” And it felt good sharing my new understanding of myself to help other people understand neurodiversity better. Two persons even said they related to some of the autistic traits I shared in my article.
Here’s my favorite comment from my friend Kenny that reflects why I encourage others to share truths about themselves with others:
“So proud of you — what a brave thing to do — to explore your journey — last year I made some discoveries about my parents — it helped to discover the underlying root causes of their journey and how that transferred to our family dynamic — thanks for sharing. Your honesty is so great — much success in further explorations!”
— Kenny Campbell, Facebook
Sharing my journey to discovering my autistic self feels like an important step to being a part of the effort to bridge the neurological gap between neurotypical (non-autistic) and autism families.
Yes, if you didn’t know, there’s a divide between neurotypical and neurodiverse people in our society, and schools are not an inclusive place for neurodiverse kids. Autistic kids are often ostracized (a covert form social bullying) for their differences, causing anxiety and trauma.
“Seventy percent of kids have kids with autism will have a comorbid psychiatric disorder,” says Connor Kerns, assistant professor of psychology at the University of British Columbia in Vancouver, Canada.
Mental health issues like anxiety and depression may not be observable to teachers or parents because autistic kids are good at masking their hurts, or they may not be award that ostracism is a form of social bullying.
But one way that you can tell how your child is being treated at school is if they say they don’t want to go to school. School refusal is common in autistic kids in the U.S and UK, and it reflects hoe autistic kids feel about school.
Harry Thompson, a YouTuber on the autism spectrum, public speaker, and author, describes the how autistic kids and adults often suffer trauma as a result of people who don’t see recognize their invisible disorder:
Looking at life through a new lens
My new revelation has brought one change. It’s reshaping how I look at my past 52 years through a neurodiversity lens. Now, for instance, I see why I teaching in a classroom can be so hard and emotionally draining for me.
It has also shaped the way I look at the future. I’m embracing my new understanding of myself and making changes to utilize my autistic traits.
As for pursuing a diagnosis, it isn’t something I’ve decided to do yet.
It’s far more important to me that I feel comfortable with my new understanding of myself and to live out my truth than to have what I’m 99% certain of to be acknowledged by a psychologist — who may or may not be aware of the less-known autistic traits.
I’ve read books and stories about experiences of people growing up undiagnosed. I’ve done the hard work of self reflection. I’ve thought if my traits might fit under some other label than autism; many of which I used to describe myself in the past like introvert. But I’ve come to see that autism is the best description for my traits and for myself.
And I’m good with seeing myself as autistic.
Because it describes who I am. I am autistic.
Thanks to these autistic writers
I’m so grateful for those people who shared their autistic journeys on Medium. About being diagnosed in adulthood (Serenity Jean), about people adjusting to life after a diagnosis (Ines May), about the danger of being undiagnosed with autism (Keira Fulton Lees), about the thing called Autistic Meltdowns (by Justine L) and about the challenges of multi-tasking, aka executive functioning (by Kirsty Kendall) issues.
I know I still have a lot to learn about myself — and I’m exited to continue learning about the autistic part of me through reading books by autistic writers like Daniel Bowman Jr.’s On the Spectrum, Cynthia Kim’s Nerdy, Shy, and Socially Inappropriate and Julie Brown’s Writer’s on the Spectrum.
“‘I knew who I was this morning but I’ve changed a few times since then’ “
— Alice in Wonderland
Thanks for reading my story.
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