His needs came first; his special meals, him being warm, him brushing his teeth, his therapies, his comfort was paramount. I think my moment of revelation happened when all my friends were applying to University and I was just being a teenager. I suddenly realised that his future depended on my own, so I got myself together and got into University, for him. I got a Bachelor degree, a Masters, and a second Masters in Human Rights law for his future. I work full time, go home and study until I fall asleep, often on my books, because I want to create a world where he can grow up and live as himself.
I love every minute of it, I am so proud to be part of an autism family because I have a purpose. Every exam I take, every hour of sleep I lose, every social event I miss will be worth it because when he is finally under my care I will be able to make him happy. Whether he wants to listen to his music, play with his flatbeans or go to the moon I want to be able to facilitate it; even though he would hate the moon and the ride there.
Autism stole my self-centredness, it ripped away the attention I got as the family’s first-born and enabled me to stand on my own two feet, without being catered to.
It’s impossible to explain the feelings you have as a sibling of autism. The love is consuming, the drive is overwhelming. These feelings cast shadows over neglect, jealousy and animosity. Watching Christos grow from being a non-verbal little boy who threw tantrums like there was no tomorrow to becoming a teenager who is able to communicate with us and tell us what he needs or where it hurts is mesmerising. It’s like he’s the light and I’m the moth.
Autism took away my faults; my intolerance, my shyness, my stubbornness, my lack of assertiveness, my knack for procrastination. It taught me to persevere, work hard, never give up and be compassionate.
Growing up in an island of half a million people wasn’t the best experience. You become wrapped up in a society that is its own world. I had never heard the word autism before Christos, despite having a special unit at my primary school. Looking back, I consider my primary school years an initiation to what my life would encompass. I got into trouble because my dad is Sri Lankan, which meant that I experienced early on how mean children can be to people who are ‘different’. So, when no one would play with me at break or my friend was not at school, I found solace in the special unit. That group of kids didn’t care where I was from or who I was, they were just accepting, they loved my hair and we used to play ball and do puzzles at break.
I didn’t want my brother to be an outcast; I didn’t want anyone to be an outcast. I grew up in a family environment that saw human beings instead of a list of differences and I didn’t understand why some saw disabilities instead of individuality. When I started living on my own, surrounded by people that are all unique, I realised that my family and my Christos, took away all the ‘differences’ I could have seen in someone and replaced them with just another regular human being.
Autism took away my prejudice. Christos taught me to look beyond the person and appreciate that they have a whole life that I don’t know about. Autism made me realise that everyone has their own struggles; autism taught me respect.
5. My box
In the 17 years I have lived with autism, I have come across all the imaginary boxes I could have locked myself up in. When Christos came into my life, he took one look at my little box and destroyed it, almost immediately.
He took me out of my comfort zone all the time, every day. We weren’t equals in any sense. We stopped going to restaurants, the park, family gatherings because it was just too difficult for him to cope; and, even though my mum said I understood, I would go back to her the next day and ask if we could go out. I didn’t understand him at all, he challenged me, he defied my expectations relentlessly, he made me work for every word, and his affection.
He caused me to shift my perception constantly in order to keep up with him. We fought over silly DVD covers, threads on socks and I remember looking at him and thinking that our bond had been spoiled forever. Then I grew up and realised it had become indestructible; a Gordian knot. Christos forced me to mature, he forced me to try and be better, he motivated me, and he gave me determination.
Autism took away my inhibitions and it forced me to discover myself; he made me a better person.
Autism is consuming, and anyone who says they never got annoyed or wanted to give up is lying. Christos used to break my dolls, my dollhouses, he ruined every single cassette and DVD I had and drew on my clothes. I could never watch what I wanted, or listen to what I wanted, I can’t even sing in the car! But, on the other hand he gave me dreams that scare me so much they keep me up at night; he pushed me to be the best I can in everything I do.
This is why I write about him. I want to make this a place where characters considered ‘different’ don’t have to live with the stigma of the spectrum or their disability. That’s why I want you to know, I want you to tell people about autism, about Christos. I want awareness, I want my brother to grow up and have a happy life, without being stared at or labelled as ‘weird’. I want your son, brother, sister, daughter to know that they are cared for, and that they will be safe.
The current ‘cure’ for autism is that it gives the family a voice so loud it reverberates around the world. It echoes in science, research and community work raising awareness and building foundations for future generations of autism families to be supported.
My brother’s autism robbed me of the worst parts of myself and forced me to be better; for him.
About Dora Perera
Dora grew up in Cyprus and is half Sri Lankan. She is a law graduate from Lancaster University and the University of Kent and is currently working at the University of Kent and studying the i-LLM-LPC at the University of Law in London. In her spare time, she researches and writes an autism blog about her brother (christos90.wordpress.com), watches Netflix and plays boardgames with friends. She is an aspiring human rights lawyer and hopes to help make a difference for people with disabilities in the future.