‘DISABILITY DOESN’T MEAN THE END OF OUR WORLD’ How holidays with her autistic son redefined Penny Wincer’s idea of travelling
When Penny Wincer’s son was diagnosed with autism, she wondered if she would ever be able to travel with him. But she did, and carved out new adventures for her family along the way
Iwas sitting beside my oldest childhood friend, by the river Swale in the Yorkshire Dales, looking out at our children playing together. They had stripped almost naked and were clambering over the large boulders and laughing. My friend was on a flying visit from Australia and my kids and I had driven up from London that day. We marvelled at the sight of our children playing together for the first time. A sight had no idea if I would ever see. A lot more than an expensive 24-hour plane journey now separated my little family from my childhood home across the world.
My son, Arthur, who was six years old that summer, would not be getting on any planes anytime soon. Just getting him to Yorkshire had taken every bit of determination I could muster. It had involved huge amounts of planning, snacks and headphones with one piece of music (Tchaikovsky’s Waltz Of The Flowers) on a loop. We endured a horrific toilet break in which Arthur’s anxiety peaked and I had to hold him as he screamed and my four-year-old daughter had a wee. But we made it. And here I was watching him squeal with delight as he threw rocks into the river, standing in the sun and experiencing the kind of freedom not easy to replicate in the city.
I grew up in a family that travelled. My dad’s work took him all over the world and away from our Melbourne home for months at a time. School holidays were often spent following
him to wherever he was located. In my teens, after my parents’ divorce, I started travelling alone to and from LA where my dad was based. I moved to London, then New York, where I worked as a fashion photographer’s assistant. I was most comfortable in an airport, especially alone, passport in one hand and camera bag in the other.
The day of Arthur’s diagnosis, I lay in bed gripped with panic. He was just three and struggling. He couldn’t speak, couldn’t follow even simple instructions and had screaming meltdowns caused by an infinite number of things. But that night, lying in the dark, my panic centred on something that, to many, might seem trivial. What if I can never travel with him? Here I was, on the other side of the world from my family and oldest friends, with a child who could barely get into a car without a meltdown, let alone a plane. I felt the walls of our lives closing in; I wondered if we would ever not feel trapped.
Autism is a developmental disorder that affects the way a person experiences the world, how they relate to others and how they communicate. At three, Arthur would scream hysterically and thrash his limbs when overstimulated with noise and visual information. He couldn’t wait for anything. His sensory needs were intense, he needed to move and he compulsively jumped and pushed himself against things. We avoided restaurants because he only ate about four foods. Every aspect of travel seemed to offer insurmountable problems. At the end of my marriage, when my children were five and three, I was determined to avoid becoming isolated. I was going to learn how to navigate life as a single parent with an autistic child, just as I had learned many other things in my life. We tentatively started small adventures. Beaches were perfect places for Arthur, who loved to play with sand and watch waves. But, on our first trip to the Kent coast, I realised I couldn’t get to a toilet. He refused to budge from the shoreline where the waves had him entranced.
We hired cabins in East Sussex, domes in Wales and even an old bus kitted out with bunk beds in Dorset. Cosy places seemed to provide comfort and joy, and I felt less stressed about Arthur’s compulsive touching, climbing and running. Wild outdoor spaces provide the kind of sensory play he loves, with water, stones and sand. On beaches, he is free to touch whatever he likes. Unrestrained freedom is something so difficult for him to have in our world of complicated social rules that he struggles to understand.
I reached out to friends and invited them away with us. Nervously at first, then more confidently as I learned how willing they were to make room for Arthur’s needs. On our first holiday with friends to Wales, I walked to the beach with Arthur each morning. We would return an hour and a half later, with Arthur calm after his early-morning sensory play and my friends handing me coffee and breakfast.
Each trip would see little improvements: a calm acceptance of a new bed, or the ability to stay in the car a little longer. But there were setbacks, too. At the end of a trip to Dorset, I had to strap Arthur into his car seat, and he screamed while I packed up. He was fixated on getting to the beach and wouldn’t calm down until we got there. With tears streaming down my face, past check-out time, I packed as fast as I could; he kicked me whenever I came near.
As Arthur has grown, his care needs have increased. His communication has slowly improved, but he still can’t answer questions. If he bolts during a meltdown, he can’t tell anyone his name or mine. At nine years old, he still kicks and head butts me as I attempt to get him back to the safety of the car.
Last year, I placed my pride aside and took a carer on our summer holiday to Center Parcs. We went down water slides, rode bikes, and Arthur got to experience the kind of holiday I had thought was out of our reach. When friends assumed taking a carer would allow me to have a break, I laughed. There were no breaks, but we had fun. And we kept him safe.
I have learned to let go of the ideas I once held about family life. Just as I have come to understand that disability doesn’t mean the end of our world, I have discovered that adventure doesn’t mean travelling the globe or even getting on a plane. Adventure is sitting around the outdoor fire pit, the first time flying a kite and blowing bubbles in a field. Adventures are found in the tiny details, in the stretching of possibilities and horizons beyond your front door, even if that isn’t very far.
‘I LEARNED TO LET GO OF THE IDEAS I HELD ABOUT FAMILY LIFE’