It was a moment like so many I had in my earlier jobs. I walked into the office to find a co-worker pacing. I pace when I’m pondering something, I thought. I’ll just leave her alone. I ignored her. Soon she turned to me, her voice raised. “How could you just walk past me when you can see how upset I am?”
“I thought you were just deep in thought,” I said, confused.
“Oh sure you did,” she scoffed. “My father’s in the hospital and I don’t even have any paid time off to be with him. I would expect a co-worker to care but you don’t even notice.”
I sat, silent. I was trying to think of ways to fix her problem. My co-worker lashed out. “And now I pour out my heart to you and you just sit there saying nothing! You are so heartless.”
I’ve screwed up, I thought. She’s angry and I can’t make any words come out.
Determined to make this right, I went to our boss. I asked him to give my PTO to my co-worker so she could visit her dad. But I knew there would be attention on me if anyone learned of this – and I hate attention. “Keep this anonymous,” I said.
I wanted to go talk to my colleague but I felt paralyzed. Later she came by my desk.
“I guess there are good people in this office because someone gave me their PTO so that I can visit my father,” she said. “As there has been no apology from you, then I assume that you just don’t care. This will be the last time we speak!”
I am one of more than 5 million American adults with an autism spectrum disorder (ASD), a developmental disability that can affect the way a person thinks, feels, communicates and interacts with others. One in 54 children have ASD, and my son, Levi, is one of them. People like us are called “neurodiverse” – a term used to describe those whose brains work significantly differently than those of most. He and I have both been diagnosed with Asperger’s syndrome. I am considered “high-functioning” on the autism spectrum. April is Autism Acceptance Month and I want to share my story.
If you looked over my resume – filled with leadership roles I’ve held, awards I’ve received, classes I’ve taught and presentations I’ve made – you would never know the crippling effects Asperger’s has sometimes had on my ability to communicate and be understood. It’s an invisible condition. I have worked very hard to adapt my neurodiversity to a “neurotypical” world. Today, I am a successful operations specialist in corporate health information management at Novant Health. I plan and organize projects to improve the way our health information department handles millions of patient records.
In the past, I hid who I am. But not anymore.
Humiliation at a funeral
I am 43. When I was growing up, nobody knew I had Asperger’s or what that even was. Now we know there is a wide range of disorders on the autism spectrum and that genetics and environment play a part in their cause. We know now that being “on the spectrum” is nobody’s fault. But when I was a child, I was called “weird” and “difficult.” Like many others with an autism spectrum disorder, I struggle to read social cues to know when someone is happy, angry or sad and to respond appropriately. My very understanding husband, Ross, is a big help. He’ll give me a small signal to alert me when someone we’re talking to is growing upset, so I can respond appropriately.
Strong emotions overwhelm me and, in the past, sometimes caused me to blurt out the wrong thing or respond in a way I don’t want – but can’t control. As a little girl, I was overwhelmed with sadness at a funeral – but instead of crying, I burst into laughter. I was horrified to find that I could not stop myself! My dad had to carry me out, and I felt so ashamed.
Here’s what I want people to understand
There’s a saying – when you’ve met one person with autism spectrum disorder, you’ve met … one person. It affects each person differently. But here’s what I tell people about my Asperger’s:
- Eye contact is hard. I have conditioned myself to hold someone’s gaze, but it can be exhausting. Don’t get me started about being on-camera on Zoom!
- Physical touch from strangers is challenging. I have trained myself to shake hands. But even though I work in healthcare, I admit I have put off a lot of doctor’s visits because I have to truly brace myself for the close physical proximity and touch an exam requires. I have been so impressed with the care and compassion of Novant Health providers who seek to know and understand their patients. In particular, Dr. Heather Laughridge at Novant Health Psychiatric Associates - Huntersville has been instrumental in assisting us with our son. Her compassionate care helped my son open up.
- I often speak in what we on the spectrum call “flat affect” – without a lot of rise and fall to my voice. People sometimes think I’m arrogant or uncaring. Nothing could be further from the truth!
- I have learned to pick up on body language and facial expressions to interpret emotions. But like learning a second language as an adult, it never quite feels natural. I always hope people don’t make snap judgments based on my voice or communication style. If they only knew how deeply I feel and how compassionate I am. I appreciate it when others show me grace.
- Like others on the spectrum, I am hyper aware of sounds, smells and sights that others can screen out, like the humming of fluorescent lights. I tell people it’s like there are 40 tabs open in my head and four of them are playing music. On the flip side, I can go very deep in concentration when I am immersed in a fascinating topic.
- I often need a little time to respond to questions. I’m a smart person. But I think deeply about things and like to give complete answers. Being quiet doesn’t mean I’m disengaged. It usually means my brain is furiously processing.
- Being in the spotlight can completely overwhelm my emotional responses. Once, in a professional setting, to draw us out of our natural introversion, I and others were made to get up in front of a large group, put on props and sing karaoke. No one knew this could be a nightmare situation for someone on the autism spectrum.
My autism superpowers
As a parent of a child with ASD, I hope he learns it’s important to show the world who you are and the special contributions only you can make. In my current role at Novant Health, that’s proven to be the case again and again.
In my daily work life, I manage projects and complex patient information. It’s a role with a lot of responsibility and demands strong organizational skills. My son and I sometimes talk about our “autism superpowers” – and one of mine is pattern recognition. I have what I’m told is an almost eerie ability to scan hundreds of lines of code and spot mistakes. Things that disrupt the pattern jump out at me immediately, and it wasn’t until late in my career that I realized that’s not the case for everyone.
Another superpower might just be my empathy. I am not always immediately aware when a situation calls for empathy. But my experiences make me extraordinarily sensitive to the struggles of others. In life, we are not all born at the same starting line. But we can all help each other in the race.
Here’s what you can do
While I don’t expect the world to change to meet my needs, I do wish for greater understanding. When you talk to someone whose expression is wooden – instead of assuming he doesn’t care – consider that he might have a condition like autism or Parkinson’s disease that limits his expressions. If you interview a job candidate who doesn’t make a lot of eye contact, don’t dismiss her capabilities.
And this one goes straight to my mama’s heart – if you see a child melt down in a grocery store or other space, as my son has so often, please, please don’t judge him or his parent. That child is overwhelmed. If he has a spectrum disorder, it has hijacked his emotions and his control. And his mother might be someone like me, who works so hard to help her son live in a world wired differently than he is.
It's certainly not all negative! I am excited to share my story so that others who are hiding their autism spectrum disorder will feel braver about disclosing who they are and what they offer.
Each human being is beautiful and complex – just like the world we share.
As told to Amber Paddock
Top photo: Pamela and Levi Lail
Novant Health supports and celebrates individuals of all abilities. In 2020 Novant Health was named a “Best Place to Work for Disability Inclusion” by Disability:IN and the American Association of People with Disabilities (AAPD). Novant Health President and CEO Carl Armato joined CEOs from across the country in signing a letter urging Fortune 1000 companies to advance disability inclusion.