Autism is a lifelong developmental condition that affects, among other things, the way an individual relates to his or her environment and their interaction with other people. Read author Mary Anne Napper's first-hand account of growing up with an Autistic brother.
I grew up with a profoundly autistic twin brother. Our relationship had a unique and significant impact on my life. The bond between us has been life-long.
Johnny taught me to be patient, tolerant and compassionate, even though I did not fully understand his condition. I knew he was different and special. Caring for him gave me opportunities to learn how to handle difficult situations. Maybe that is why I followed a career path in mental health. Johnny’s quirky sense of humour, his love of trains and his unconditional acceptance of those around him are traits that have warmed many hearts. He has taught me to be wary of judging others and to accept people at face value. He has taught me to appreciate the simple things in life like riding on trains and buses and blowing up a balloon until it pops.
Autism remains poorly understood by most Australians. Services for autism have made some progress in recent years but there remain significant shortcomings in their provision. The general public has little knowledge of autism despite various autistic associations’ attempts to create public awareness and education. Rural areas are disadvantaged as treatment centres are usually located in capital cities.
The development of ‘mainstreaming’ programs in our schools has many problems. There are also very few if any services for adult people diagnosed on the spectrum. Services are limited and the numbers diagnoses have increase in the last decade. These services have to rely on public donations and fundraising as State and Commonwealth governments provide limited funding. Many families cannot afford to access these services and their children fail to receive appropriate treatment.The prognosis for autism is unclear. The cause is still unknown and there is no cure. Children with profound autistic symptoms will most likely never hold down a job or live independently.
Even today autism continues to have stigmatising aspects because of the extremely disruptive nature of autistic symptoms. Most families continue to feel stigmatised by their autistic child’s condition. They isolate in our community and restrict their social activities to extended family, a few friends and other families with autistic children who understand their child’s condition. In public places like department stores and shopping centres where property may be damaged or the autistic child violates personal spaces, people stare and don’t know how to react. They are embarrassed when their own child says out loud, “What’s wrong with him, Mummy. Is he crazy or stupid?”
Most people know what Down’s syndrome is because there are physical characteristics. With autism the child may appear normal and is viewed as disobedient. The parents feel they are being judged in public when a person responds with, “Can’t you control your child?” These misunderstandings make it difficult for the general public to relate to autistic children and their families.
Today my brother, Johnny, lives a meaningful and full life. He resides in a group home with four other disabled adults where there is twenty four hour supervision by caring staff. There are structured activities in the home which include daily chores and meal preparations. The residents take part in the weekly grocery shopping. Johnny manages his own money and buys his own clothes. They have outings to the local clubs and sporting facilities and are kept busy most of the time. He has learned to survive in our world but still retain the richness of his own.
Throughout my childhood I harboured a subconscious resentment of not having a ‘normal’ twin, of being deprived of the unique experiences that twins enjoy and of having to carry many of the responsibilities of caring for him. Writing my novella, BORN TO FLY – Living with Autism, gave me the opportunity to explore my own childhood and appreciate my brother’s uniqueness. I now realise how blessed I am to have him in my life and how much richer my life has become because of him.
I wrote the book to inspire people with autism, their families and health authorities to consider all approaches when trying to help someone with autism relate to and interact with the world around them. I hope that it will give the reader insight and awareness into the difficulties faced by families connected with autism in our community.
Mary Ann Napper shares a fictionalised version of growing up with an Autistic brother in the new book, Born to Fly: Living with Autism, now available at good book stores and online at borntofly-livingwithautism.com.au