A Special Letter to My Autistic Twin
Mary Ann Napper’s twin brother, Johnny, was autistic at a time when autism spectrum disorder (ASD) was not understood and rarely diagnosed. Too often children with autism were institutionalized and not given a chance to experience life. While there have been some challenges over the years, Mary Ann and Johnny share a special bond and feel blessed to have one another. Their unique friendship is reflected in Mary Ann’s letter written to her brother:
I realized you were different when I started school without you. That was in 1951, when you went to a special school called the ‘Spastic Centre.’
I asked our mother why you were different. She told me you were “mentally retarded” because your brain had been damaged at birth due to lack of oxygen. Since I was the first-born twin, I believed for many years that I was the cause of your damaged brain. Autism was not fully understood back then and there were no treatment programs for the condition.
Growing up with you had a significant impact on my life. Throughout our childhood I harbored a subconscious resentment for having a special needs twin, of being deprived of the unique moments twins enjoy, and of being expected to carry the responsibilities of caring for you.
Even today, families feel stigmatized by their autistic child’s behavior. Our family was no exception. Our parents isolated us from the community and restricted our social activities to visits with extended family. I was embarrassed in public when you damaged property or violated personal spaces. People stared at us, disapproving your ritual and repetitive behaviors particularly when you rolled your head, rocked your body, flapped your hands, and banged your head while making a monotonous sing-song noise. Sometimes adults would say to our parents, “Can’t you control your child? He needs to be in an institution receiving proper care.”
I was teased at school because I had a brother who was different. I pretended to ignore cruel taunts but I felt so alone. I had no one to talk to who understood what it was like to live with a brother who had special needs. When I invited friends home to play, they came once but never returned. You didn’t have friends. Other children frowned warily at you and stared. You couldn’t comprehend or socialize with them because you missed their subtle facial expressions, eye contact, and body language. I didn’t understand how to play with you either. Each time you arranged your toys in long lines, I tried to rearrange them, and you threw tantrums. So I walked away and left you to play alone.
In your early 20s, you were committed to a mental institution. Our parents could no longer cope with your aggressive outbursts and self-harm attempts. I was studying nursing in Sydney at that time and was expected to continue caring for you. It broke my heart to visit you in that asylum. It was a locked ward. The inmates either ran amok or were over sedated with tranquilizers. You used to enjoy a drive in my white Mini. I would buy chocolate Paddle Pops, your favorite treat, and we would sit in a park to eat them.
Growing up with you also had positive effects on me. You taught me to be patient, tolerant, and compassionate, even though I did not fully understand your condition. Caring for you taught me how to handle difficult situations in my life, particularly when we were out in public or when I needed to be aware of your misunderstood behaviors. Your quirky sense of humor, your love of trains, and your unconditional acceptance of those around you are traits that have warmed my heart. You taught me to be wary of judging others and to accept people at face value. You taught me to appreciate the simple things in life, like riding on trains and buses and blowing up balloons until they popped.
Today, you live a meaningful and full life in a group home where there is 24-hour supervision by a caring staff. You participate in structured activities, which include daily chores and meal preparations. You take part in the weekly grocery shopping and manage your own money to buy your train magazines and clothes. You enjoy outings with your fellow residents to local clubs and community activities. You have learned to survive in our world but still retain the richness of your own.
I realize now how blessed I am to have you in my life and how much richer my life is because of you.
In April 2017, we celebrated our 71st birthday. That special bond between us has been life-long.
Sending you warm smiles and lots of love,
From your sister,
“Mary Ann’s book, Born To Fly, provides insights for families and health professionals directly connected to autism. It is also a great resource for readers simply seeking to better understand the condition. Her skillful writing paints a vivid picture of one boy’s journey and opens a window to the determination and resilience of the human spirit, especially when life’s challenges seem insurmountable.” -Christiana Star, psychologist
Born To Fly is inspired by a true story and can be purchased on Amazon or Mary Ann’s website.
This article was featured in Issue 65 – Back-To-School Transitions