This story was an entry submitted to the Autism Awareness Month 2011 Contest. Rachel is the sister of a young boy with autism. She tells her story of what it’s like to be the sibling of a child with autism. She has a unique perspective we rarely are lucky enough to hear. She tells her story very eloquently! Thank you, Rachel, for sharing your story with the Autism Community!
Autism and my wish for the future. I sit here very overwhelmed; how could I ever fully express all my thoughts in just a few paragraphs… what should I choose to share, and how do I even begin to articulate. There are countless dimensions to this, whether personal or not. Perhaps I will explain the genesis of my growing interest in this term ‘autism’… in this area… in the people involved… in this community.
“Autism” was no more than a fascination at first. It started in my early teen years; my sister began speech therapy for Specific Language Impairment (SLI). It seemed like an interesting job; quite noble I thought, and stable too. This was when I was first introduced to Language Disorders, and my fascination with autism then began. These people who spun bottles for hours… who rocked back and forth in the playground… who would only repeat everything they hear… what do they think? What motivates them? How do they perceive the world? Intriguing, but these were mere fleeting thoughts.
I was seventeen when Matthew first came into our family. Imagine growing up as the eldest of The Three Sisters – close in age and being. Our little brother came as a fat bundle of surprise and joy. He blinked at us, drooled on us for over a year. He was bothersome, but drowned our family in lots of fuzzy warmth.
After some time his immersive interaction with us suddenly ceased. We noticed a strange obsession with escalators and lifts. My brother ignored his toys and his family, often threw tantrums and kept to himself. My parents were quick to recognise these signs, and one day my brother broke the news to me. Indeed, my brother has autism.
Autism. In an instant it changed… from a fascinating subject it became a frightening part of reality. I didn’t know how to view it of course… was it a disorder? A disease? A difference in personality? Autistic… a group of people simply different from the rest of us?
And why… why did my little brother have this… thing. It haunted me for months. It took a toll on my family as well and permeated through the household; life started to revolve around him. Therapy. What sort? Money. How much are we willing to invest in a certain programme? At home… What can we do to help him? Lifestyle. How much of our own lifestyles are we willing to change to help him? And the worrying began… yes, what of his future? These were practical concerns, but the toll took various forms. There was guilt from speculation; did we feed him anything wrong… what did we do, bringing him into this world?
There was also heartache. This was about loving someone dearly, and wanting to show this love, but not knowing how to. For my parents, it was about loving their child, and not even knowing if he recognised them. I think it is deeply painful. Also having your child shunned at the playground by other kids and parents… being rejected by countless kindergardens. Especially in the results-driven city that we live in, having such a child is difficult; at four, parents are giving their children music lessons and tuition classes, preparing them with simple mathematics and possibly assessment books. My brother is still learning to talk.
Really… what IS autism? I used to dwell on this, and so did my family.
My brother has autism… but why should I classify him as ‘autistic’? Why can’t I view him as a child.. perhaps he really isn’t so different from everyone else. Why not look at what he’s good at, or what he’s really like. Why let this term place a label on him and classify his every move as a ‘symptom of autism’? Most importantly… why not look at him for who he really is… He is, afterall, my brother.
Matthew finds beauty in different things. He perceives the world differently… I can’t imagine him as anyone else different. He’s a beautiful child with a streak of independence, a crazily good sense of direction… someone who enjoys flapping his arms about and spinning in chairs. Someone who giggles to himself off and on for fun… Someone who explores his environment with curiousity and intensity. Who just doesn’t care about the world. He is no longer ‘autistic’ to me. He is one of the happiest and most contented people I have ever known. He might often throw tantrums, but there is still an innocent joy that is blatant in his entire being. I can no longer see the fault I once saw in him.
I wish more people could see the beauty that I see in such people. They have their own gifts… They are rich in character; they are special. Since autism is on such a diverse spectrum, it is even highly likely that all children are on a spectrum in some way or another. I wish for my brother to maintain his wonderful character… but to learn to interact with the rest of the world. I wish for my little country to have more programmes for children like my brother… to remember them and not leave them behind in our streamlined education system. For my community to accept people like my brother… to see them as I do.
I hope to one day become a speech therapist. I want to make a difference here… I want to understand this special community that I do not understand.
I wish for my family to continue with its optimism and spirit… I wish for all the other families in similar situations to have the same spirit. I wish for a bridge of communication between communities of people, and that such groups are more accepted into society.
I wish to reach out to my brother. I hope to one day have a conversation with him, and build the same bridge of communication with other members of this special group of people.
I love my brother and I love my family. They are truly my source of inspiration, and amongst many lessons, have taught me to love. They have taught me to love the autism community as people with potential and beauty. They have taught me to think twice about people different from myself, and to accept them for who they really are.
(written by Rachel, whose 4 year old brother is on the spectrum)