This article originally appeared on www.senmagazine.co.uk
Long before Isaac was diagnosed with autism at the age of three, I saw how the world, with all its peculiarities and obstacles, was that little bit more hostile for him – that little bit harsher. Seeing him struggle – often articulated as screams, anger and crying – seemed so unfair to me. I didn’t subscribe to the terrible twos or naughty toddlers view; there was something about Isaac’s tears that was different. Then the year-long punishing process of tests finally came to a conclusion in a paediatrician’s room with the words “autism spectrum disorder”, a tongue-twister that deliberately acts as a soft landing for the harsher truth: “your child has autism”.
Autism now affirmed my regular bouts of heartbreak that accompanied Isaac’s regular bouts of distress. It was the alibi for his perceived anti-social behaviour. The subsequent learning curve was steep and rapid but was aided considerably by Brent, where I live in London. Its support structures involved workshops, relevant therapy, advice on education, and bodies to assist Isaac through mainstream or specialist school. My wife and I felt reassured that, as long as we fought Isaac’s corner, there was a team of people who would fight it too.
However, what I came to realise quite swiftly was that a chasm existed between what some people knew about autism and what most people didn’t. If the condition hadn’t touched them, it seemed not even to be on their radar; autism awareness was minimal at best. Professionals, experts, and parents who had accepted their child’s diagnosis, on the other hand, were awash with facts and immersed in the world of autism.
I quickly benefited by joining an online community about autism where questions were posed and answered, discussions launched and new people nurtured with the help of its community champions. I also became aware of its presence as a safe haven from the everyday assault course of discrimination, generalisations, judgements, ignorance, exhaustion and difficulties that parents of children with autism battle with – to varying degrees – day in, day out. Things like the postcode lottery for support services only compounded the ignorance around autism.
Crucially, it kick-started a need in me to write about autism as a cathartic personal response, coupled with a commitment to help spread awareness. I began writing in the emotional stories section of the site and became an autism campaigner by accident.
I was able to express how I felt being at the beginning of my journey and it seemed to be well received. Getting regularly involved in discussion forums compelled me to do more and this is what inspired me to start blogging about life with Isaac.
Simply writing as honestly as I can, about the plethora of issues one faces as a parent of a child with autism, has provoked an overwhelmingly positive response – one I couldn’t have predicted. People in a similar predicament seem emboldened and appreciative that I’m writing on their behalf too. Family, friends and now strangers who may not be directly affected by autism are grateful to be educated. Even professionals have circulated my blog among their staff, which is humbling.
Recalling those early tormented years fuels my campaigning as much as fighting for Isaac in the present does. I know parents whose children haven’t got a diagnosis yet or are in environments impervious to the effects of autism. If sharing our family’s story helps them in any way, then our experiences will be serving the best purpose they can.