‘I guess you’re wondering about the results.’ It was like lightbulb after lightbulb going off.’: After diagnosis, woman advocates for autism in girls, ‘Representation matters’

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“I am a young lesbian woman, and I was diagnosed with Autism just before my 25th birthday.

I’m very accepting of myself now, but the last few months have been quite a whirlwind. Finding out I am autistic well into my twenties was an avalanche of new information, and it was a steep learning curve. I honestly knew nothing about Autism (except for vague stereotypes) until the weeks preceding my diagnosis. It was like lightbulb after lightbulb going off as I understood more about why I am the way I am. Now I share my experiences and information about Autism in girls and women on social media! I’ve been able to connect with, learn from, and help so many wonderful Autistic people through various platforms and apps. However, this confidence didn’t come easily.

Courtesy of Jenni Chapman

I’ve felt different my whole life, as cliché as that sounds. My entire childhood, I felt like I had secret superpowers. My interests weren’t really the same as my friends, especially as I got older. I noticed small details in art and nature no one else did. All my emotions were giant. My imagination ran wild – maybe I was part fairy, or witch, or superhero. As a kid and well into my young adult life, I wanted to fit in. I brought up my odd interests less and less frequently, as I found my peers weren’t really into 1800s postmortem photography, the musical Parade, or macro photography of seemingly insignificant details in the world I found fascinating. I would intently observe my friends, colleagues, and people in movies and TV shows. I’d take their phrases, inflection, and style, and make them part of my own personality. I mirrored the behaviors I saw in my ‘normal’ friends, in an effort to avoid being ostracized. (All of this is indicative of Autism in girls, by the way.)

Courtesy of Jenni Chapman

In middle school, I developed pretty intense anxiety and depression. I’d have panic attacks, triggered by the smallest things. I was angry and hurt that no one understood me. In hindsight, I didn’t even understand myself yet.

By high school, I was beginning to figure out I was queer. I had my first crush on a girl, my first kiss with a girl, and began slowly coming out to my friends and family. I assumed that had been the thing that was ‘different’ about me – and now I was figuring it out, I would finally stop feeling so weird and bothered.

Courtesy of Jenni Chapman

That’s not what happened, though. In college, I struggled to keep up with my friends. I couldn’t bring myself to enjoy parties, drinking, or smoking weed. I became extremely attached to my small friend group who were more into baking, Disney movies, and breakfast for dinner. I became burnt out easily, and the huge responsibility and workload that comes with college were oftentimes overwhelming. I began therapy and medication for my anxiety, depression, and panic
attacks, which completely changed my life for the better! I felt happy and light, like I could finally function in the world.

Kelly Griffiths Photography

Simultaneously, I kept feeling that sense of ‘magic’ inside of me. I knew even though I’d practiced and developed skills to execute small talk, work a part-time job, and maintain professional relationships with my colleagues and classmates, I was different at my core. I didn’t believe I could be part fairy anymore, obviously, but that twinge of sadness that came from not being understood was persistent. I know it’s unhealthy to compare your insides to everyone else’s outsides, but it was really starting to seem like most of the people I knew had an easier time doing life than I did.

Right before I graduated from college, I met my girlfriend, Ali. I felt seen in a way that was previously unfathomable to me. Unfortunately, I was graduating and moving back to California, so we began long-distance, having only dated for three months. After a year and a half of long-distance, Ali took a huge leap of faith and moved from the East Coast to California, where we moved in together. Building a life with her has been the most fun I’ve ever had, and I feel so safe and loved when I’m with her.

Courtesy of Jenni Chapman

We like to take things on together, so once the world shut down due to COVID-19, we decided to take a job as homeschool teachers for a small family pod near us. Two of the children were young twin girls, and we’d been babysitting them for several months prior. One of the two girls is Autistic, and at first, I had a lot of trouble teaching her. I didn’t know which problematic behaviors were simply her making bad choices (and therefore required discipline), and which behaviors were caused by her Autism and weren’t her fault. Ali, who is a preschool teacher and knows a bit about Autism, suggested I read up on it – specifically Autism in girls. I struggled to find reliable sources on the Internet because there is so little research done about the ways girls and women experience Autism. I figured it was only young boys who were shy and smart at math and science, so I was interested to learn how differently Autism presents in girls. I was shocked. The articles and papers I found perfectly described me and my own experience of the world.

Courtesy of Jenni Chapman

How could this be possible? Based on the stereotypes I knew, there was no way I could be Autistic. But there it was. I felt anxious. People already knew about girls like me. Why didn’t anyone tell me? As I learned more, I found hardly any doctors or teachers were looking for Autism in little boys (and even less so in girls) back in the 90s and early 2000s. Additionally, Autistic girls and women are often able to mask their Autistic traits and behaviors – which makes getting a diagnosis even more unlikely. While I read, I realized I was being handed a key to myself. I wanted to know more.

Courtesy of Jenni Chapman

One afternoon in early July, Ali and I were relaxing in our apartment complex’s pool. I told her about my findings and asked if she had ever considered the possibility of me being Autistic. She replied the thought had crossed her mind more than once, and she’d been doing some casual Googling to see if it was probable. At that moment, I decided to pursue a diagnosis.

Courtesy of Jenni Chapman

A side note – getting a professional diagnosis (especially as an adult) is a privilege. It requires a specialist who can diagnose adults in your area and can be extremely costly. I am lucky to be in a position in which I have access to diagnostic services. Many people in the Autism community are there through a self-diagnosis either by choice or because they don’t have access to professional diagnosis, which is valid and acceptable. I found a list of professionals. I found one in San Francisco and reached out to inquire about the process of diagnosis and what was possible since everything was still in various stages of lockdown. He had me take a couple of multiple-choice quizzes developed to assess the likelihood of Autism, and I scored high on both of them.

Over the next few weeks, we had three interview-style Zoom calls. He’d ask me questions about my friendships, my habits, my reaction to sensory input (bright lights, loud sounds, distinct smells, etc.) and more. Since I’d already learned quite a bit on Google, I could see how so much of my ‘weirdness’ that had been following me my whole life was due to Autism. Getting burnt out so often in college, my mental illnesses, my gigantic emotions, and every little thing that made me different boiled down to this.

Jennifer Rapinchuk Photography

At the end of the third and final Zoom meeting, he paused. He said, ‘I guess you’re wondering about the result of all this, and the conclusion I’ve come to based on what I’ve learned about you.’ I was nervous, even though I felt like I knew what he was going to say. He continued, ‘You very much fit the profile for Autism… and I feel like that’s not a surprise to
you.’ He was right. At this point, all signs pointed to one thing: a diagnosis. He answered a couple of questions I had about what comes next, and he reminded me of something that has stuck with me: An Autism diagnosis isn’t discovering something new; it’s reframing what was always there. I didn’t suddenly become Autistic, and I don’t have to completely change my life because of it. He didn’t discover an illness or disease of some sort. I was being given a set of tools.

Christina Marie Photography

Now I have my diagnosis, I have the leverage to ask for what I need. I can be granted reasonable accommodation based on my sensory needs (like filters over fluorescent lights, turning down loud music, and providing a private workspace if necessary). My therapist has a new window into who I am and can adjust her techniques based on everything she knows about how the brains of Autistic women work. Most of all, though, I finally understand myself and can share that understanding with others. Through my mini-essays, posts, and videos, my friends and family are able to understand the parts of myself that were previously inaccessible – even to me. I have followers who have decided to pursue diagnoses because they saw themselves in me. Our community is small but mighty.

Christina Marie Photography

I choose to share my story because representation matters. My life would have been so different if I’d seen Autistic women in books, TV, and movies. I want to be who I needed when I was younger. I’m still learning so much, and I hope to share that knowledge with my audience to help the world become a more accepting, healthy, happy place.”

Courtesy of Jenni Chapman

This story was submitted to Love What Matters by Jenni Chapman from San Francisco. You can follow their journey on Facebook. Be sure to subscribe to our free email newsletter for our best stories.

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