Recently, on Autism Awareness Day, Anila Ansari shared a touching video of her brother Zulfi on Power 99 Islamabad a local radio station. The video, with Zulfi talking about his autism and his fears for the future touched many of us. Here Anila shares more of her and Zulfi’s story.
Growing up with an autistic brother in the 1970s and 1980s in a society like Pakistan had so many challenges. I can’t even remember the number of times my sister and I came home crying. Children would tease my brother calling him words. Pagal. Stupid. Moron. Saaein. It broke our hearts. But it also made us patient, empathetic and resilient.
Back then there was no support, no schools for children with autism. Zulfi went to a couple of mainstream schools but it didn’t work out. It was so frustrating to see our only brother not able to do everyday things like going to school, going shopping, making friends, playing in a park that we neurotypicals take for granted.The worst part was we didn’t know why our brother was the way he was. Health professionals would casually say Zulfi was “mentally retarded” a term we didn’t like at all but in those days no one in Pakistan knew anything about autism.
I moved to the UK in the 1990s and that’s when I came to realise that my brother was on the autistic spectrum. Working within the health sector in the UK, I now understand that had my brother received a diagnosis as a child and accessed appropriate support he would have been able to lead a more independent life. I often think of the lost generation of autistic adults in Pakistan who never got a diagnosis and never got the support they needed. Having lived and worked in the UK I now understand how important it is to have supported accommodation for adults like my brother, a safe home for autistic older adults whose parents have passed away or are too old and frail to look after their children. A home where a person with autism can feel safe and loved and live with dignity.
I want to establish one such a home in Pakistan. A kind hearted young entrepreneur and a philanthropist in Pakistan has donated a piece of land for this purpose, which is a start. We are now looking for others to help us on our journey. It is a journey of a thousand miles, but we have taken the first important step. I am not alone. A few friends, broadcasters, human rights activists, development sector practitioners are working with me and I can’t thank them enough. And of course we have Zulfi. I know we will do this, with him and for him and for many others like him that follow.
Anila Ansari is a communications expert, media and community trainer, health improvement practitioner and a campaigner for gender equality. She has worked with Power 99, Islamabad and Awaz FM in Glasgow to create awareness on these issues.
