I went my whole life — up until very recently — not knowing of my autistic identity. Deep down, I knew something was a bit different about me but learned to ignore it and how to interact with the world that is so often set up for a person of typical neurology. And so I silenced myself and sought information from all around me but not from within me.
I don’t blame my mom or family for not pursuing a diagnosis for me. It’s a relatively recent shift to have more and more information surrounding autism available, because we have a better understanding now of what it means to be autistic. And that’s amazing! One of the main ideas now understood is that to be autistic means simply to have a differing neurology — in other words, autism is not a disease. It just is what it is; I just am who I am. Do I experience and interact with the world in a different way? Yes. Will that sometimes make me stand out and perhaps seem “quirky”? Yes. Will I face obstacles? Yes. Will I be autistic forever? Yes.
I had been told for a couple of years that I was autistic by several autistic friends. They’d frequently say, “Meg, you know you’re autistic, right?” or “Meg! Wait, you don’t know you’re autistic?” I’d sit with the idea for a few minutes but brush it off quickly — I knew I had some of the qualities and wiring of a neurodivergent individual, but I didn’t want to be an imposter and flippantly identify as autistic. I’m a speech and language pathologist, working primarily with children on the autism spectrum in the Salt Lake City area; I’m also the author of a children’s book series centered around an autistic crow named Otto. I felt I knew almost all there was to know about being autistic and could very easily befriend and work with autistic children, so how could I be autistic? This is where my autistic adult friends came in and pointed out that perhaps I am autistic which is why I’m successful with the autistic children I work with, and I write books about being autistic because I understand it.
Sure, I had a hard time reading my peers, especially facial expressions. I had stimmed by picking my skin around my fingernails since I was a young girl, and I’d also count and recount the ballerina bears on the wallpaper border of my childhood bedroom again and again day after day, finding peace in the certainty. And I was always on the hunt to understand absolutely everything and everyone in my environment. If my friends did something that seemed common or “normal,” I’d adjust my behaviors and follow suit. There is much peace in blending in. Knowing all this, I still needed more evidence, more clarity before owning the identity of being an autistic woman.
I had struggled to get pregnant with my first child and underwent extensive genetic testing to determine if there was an underlying cause. I’ve always been very tall and thin and physically looked different from the rest of my biological family. I also had a history of dislocating my elbows and am extra flexible naturally. I learned I have a mild form of a connective tissue disease that is part of Ehlers-Danlos Syndrome (EDS), which explains the dislocations and the flexibility. It turns out that both EDS and being deeply feeling are two common characteristics of autism in women. Once I understood this in the context of myself, I let out an audible gasp: “I AM autistic!”
I was freed. I was less tired. It went from a whisper of “I’m different” packaged in shame, a massive cloud of confusion lingering overhead year after year, to a proud declaration: “I’m autistic.”
I deserve the freedom experienced in knowing as much as possible about who I am in order to be proud of who I am and to best advocate for myself. To lighten the load by reaching for something more authentic and individualized to who I am. Embedded in the anxiety I experienced at a very young age was the realization that I was different. And being different seemed wrong and something I needed to get rid of or hide. Imagine if I knew about being on the autism spectrum as a young girl? I would have rocked it and made sure all my classmates knew to let me be me, and I think, in return, they would have let me. When you give off the energy that you know yourself and can advocate for yourself, people tend to believe you and to be at ease with you. Will they have questions? Probably. But questions are wonderful and are the pathway to normalizing autism. That’s why I think if you’re a mom who knows your child is autistic, you should tell your child they are autistic as soon as possible.
If someone had told me that inside my head there is a brain, just like inside my peers’ heads, and that my brain was responsible for how I experienced the world around me, just like my peers’ brains, but that mine worked in a different way — not a wrong way, but a different way — that would have led to an inner peace that I didn’t achieve until recently.
That’s how I like to begin the conversation with the autistic children and teens I work with today. I gently speak with the parents and let them know this is something I’m passionate about — informing your child they’re autistic as soon as is reasonable, and typically at the earliest age possible. We don’t have to be anyone other than who we are, but if we’re not told about being autistic, we don’t really know who we are and we let the world around us tell us who we are. That’s not cool. That’s exhausting. Granting them the gift of knowing who they are? That’s freeing.
