I don’t have autism, and up until ten years ago, I can honestly say I understood very little about autisms or the lives of families who have children affected by autism. There was a boy in my daughter’s grade three class who was non-verbal, had some severe behaviours and spent very little time in her actual class. I would try to communicate with him in the school yard as he often arrived late for class as did my daughter and me. That was about it for my experience with autism – and then I fell in love with a man, and we created a larger family, one which included an amazing and challenging twelve-year old girl named Kilee.
On World Autism Day, what would I like to share about autism? First, way more people have autism than I ever imagined. Once you start living in this world, you see it everywhere. That shy man who works in the grocery store that looks down when he talks to you, that super smart kid in your son’s math class that aces all the tests, but then gets lost three times in a kilometre running race, that young woman who taps her fingers repeatedly on the table while you are sharing a meal with her; they could have autism. Statistics tell us the 1 in 68 children are diagnosed with autism, but I see it every day, everywhere. A woman struggles to get her four-year old to leave the grocery store as the child sits down screaming and yelling, I don’t see a child who is spoiled, I see the possibly of autism. The range of behaviours and challenges, the diversity of talents and abilities is so huge that there is a saying to describe it. “When you meet one person with autism, you have met one person with autism.” My step daughter Kilee will never live independently, she will probably never be able to cross the road without an aid, and we still worry about her safety and the safety of others when she is going through a difficult time. My girlfriend’s son has autism also, but more than likely he will get a scholarship to a top University, based on his brilliance and drive.
I would want people to know that raising a child with sever autism is way harder than most people can imagine. The organization, the routines, the things that don’t make sense, the issues with food, the lack of sleep. My husband tells me his daughter didn’t sleep at night until she was eight. She wet her bed every night until she was twenty. She spent most of her early years screaming, pulling her hair and banging the walls at night.
I would want people to know that parents with children with autism are doing their best. There aren’t enough answers out there. When I first started living with Kilee, I would ask my husband “why is she pulling her hair?”, “why is she dumping out all the liquid soap in the house, “why can’t she talk more?” Most of the time the simple answer was “I don’t know.” Yes, behavioural therapy can make a huge difference, diets can have some effect, routine seems to rule the day, but most of the time it’s a huge puzzle that every family is desperately trying to put together.
I would want people to know it costs families thousands and thousands of dollars a year to look after their children. To hire behavioural interventionists, to pay for art therapy, respite care, and tutoring. We are lucky, we can afford what our daughter needs, where lots of families can’t. They struggle, they mortgage their houses, they rarely stay together.
I would want people to know that these children, who then become adults, need our compassion, our patience, and sometimes they need a helping hand.
I would want people to know that I love my step daughter with an intensity and fierceness that has grown over time. She has challenged me, she has hurt me, she has brought me to levels of anger and frustration I am not proud of. She has also taught me to see the world through her eyes, to notice how amazing the wind feels on my cheeks, to stop and just watch the water outside our home for a while. She has reminded me to appreciate the little things, like eating a sandwich, or cooking a nice meal, or sitting on the dock with our feet in the water. She teaches me to slow the heck down, because she is going to do things at her own speed whether I am impatient or not, so I might as well take a deep breath and just be with her at her speed.
I would want people to know that every person born into this world has value, and a purpose, and something to contribute. Our daughter won’t invent something, or win a prize, or even contribute in a meaningful way to our economy, but she has added so much to the people who have taken the time to get to know her. The gifts she has given our other kids, is beyond measure, and I want everyone to know her life, and every person’s life, with autism or another special need is of immeasurable value.