Ross is a writer and lived most of his life with undiagnosed autism and ADHD. He speaks with me about his life before his diagnosis and then after and how the diagnosis changed his life.
Hi Ross,
Thank you so much for doing this interview. I appreciate you taking the time to speak with me.
Did your family find it difficult to get a diagnosis or support?
As a child, my family did try to get me the support I needed. I was sent to a school for ‘special needs’ children, although they could never quite figure out exactly what my ‘special needs’ were. There wasn’t as much information about autism in the 1990s. So despite going to a special needs school, I wasn’t diagnosed.
Did you ever notice there were differences between you and your peers?
Being autistic and undiagnosed can make life a very isolating place. I realized at an early age that I wasn’t like other people. There wasn’t anything I could put my finger on necessarily, just a feeling. Not having answers haunted me. Perhaps I wasn’t diagnosed back then because I learned to mask my autistic traits like a lot of autistic people do. I wasn’t aware of the mask I wore; therefore, people literally didn’t see the real me because he was hidden inside. I didn’t even see the real me. I knew there was something about myself that I was missing and that I didn’t or couldn’t quite understand. That something would take me the next 30 years to figure out.
How did you handle the difficulties of growing up feeling different and not having a diagnosis?
I learned to hide in my room, wherever I was. Losing myself in movies, TV shows, and video games. Just to have something to do away from people. When even basic conversation seems hard, you learn it’s safer that way. After all, if you don’t spend time with anyone you can’t be misunderstood. That is basically what it came down to, that was the only thing that felt safe.
When were you finally diagnosed as having Autism?
I was almost 40 when a fellow collector friend of mine (met online) suggested I may be autistic. I was almost 42 when I heard the words you are autistic. To be honest, I just got to the point where I really needed an answer. After gathering enough money to pay for a private assessment (from family), which is quite frankly the only option for adults here, I was diagnosed. I finally had an answer, one I needed because it’s a core component to who you are.
How did finally being diagnosed impact you and your life?
I could begin to understand why I reacted the way I did in certain situations, avoid triggers and find a balance for the first time. The diagnosis also gave me confidence, something that had always eluded me. I never understood the concept, but how can you have confidence in yourself if you don’t understand yourself.
What coping skills helped you when you were going through difficult times?
I have always loved being creative. I was a photographer and artist before an accident, resulting in a I have always loved being creative. I was a photographer and artist before an accident, resulting in a severe spinal injury that left me with hands that would shake from the pain. Due to my physical limitations, it became frustrating and nearly impossible to try to make art in the ways that had previously brought me joy. I was never able to return to work after the accident. My world became very small. I started writing for my daughter and that changed everything. My wife, daughter and my friends are like my North Star, they always help guide me back when I feel lost or adrift.
Did you receive support from loved ones?
I met my wife a few months after the accident. And she…, well she changed my life. We met online one day after we had both attended physiotherapy a couple of hours earlier. She has a rare bone condition, as I met my wife a few months after the accident. And she…, well she changed my life in so many ways. We met online one day after we had both attended physiotherapy a couple of hours earlier. She has a rare bone condition, and had just had an operation. We supported one another and helped distract each other from the pain. She was comfort and safety to me in a way I hadn’t experienced with anyone else. She accepted me for who I was, although it would be another 13 years until she would get to see and know all of me (post autism diagnosis).
What inspired you to start writing?
The world had been feeling very small. My wife and 4 walls. I was living in constant, and often very intense pain every day. That was my life for years. When my daughter was born my world started to grow again. Although physically still stuck inside most days, I began to create a story for my daughter. I wanted to make something that would ignite her imagination. Bring to life this amazing imagery in her head when she heard it, and later read it herself. It started as a story that she called, ‘The Bear Cub and The Butterfly.’ It took me 3 years to learn to write, to a quality of my satisfaction anyway. I remember saying to my daughter I would try to give her a copy of her book one day. And that’s what I did.
What are your thoughts on books or media for those with autism?
Being dyslexic doesn’t exactly lend itself to dreams of being a published author, but with support, I raised funds and got a publishing contract for ‘Kaleidoscope.’ Knowing at this point that I was autistic, I wanted to ensure the illustrations weren’t jarring in any way. Effectively, I wanted to ensure Kaleidoscope was as suitable for autistic children as possible. I assumed media designed for autistic children had already been done. I figured that seeing as sensory sensitivities were discovered in the 1970s, there must be some. I now campaign for media created for the autistic and neurodivergent community.
What are your goals for being an advocate for the autistic community?
My goal has changed so much since my diagnosis. What began with a promise to my daughter, became creating inclusive imagery, and is now something much bigger. I never intended on being visible but I am because I want to help create understanding and acceptance. Bring hope to the community and caregivers that need more of it. Support my community and see the dawn of a brighter future.