First published in the Inishowen Independent
Participating iconic landmarks across the world will turn blue on Monday, 2nd April, 2012 to celebrate the fifth annual World Autism Awareness Day to raise awareness for Autism.
Awareness is good. It is why I penned a book called A World of Our Own which outlines how I spent the best part of a decade advocating for my autistic child until I was blue in the face trying to unravel theories and provide therapies to help him in the shadow of a system that continues to fail our children. Sadly, families today are meeting the same challenges. Nothing much has changed except, perhaps, awareness.
Thanks to the assiduous efforts of a group of local parents who set up icare and the all-embracing vision of Scoil Iosagain, Buncrana, our community has a healthy awareness of autism that has led to acceptance and understanding but the autistic community and their families need more than awareness and a box of blue light bulbs. We need a comprehensive long-term support plan that provides equality in education, health, employment and alternative support/care programmes for all individuals with autism.
Recently, President Michael D Higgins called for a more positive perspective when he opened the State’s first dedicated research centre into autism at NUI Galway (NUIG).
“Fixing the person is not the challenge – exploring new ways of enabling and honouring human expression is the challenge.”
Err…yes Mr Higgins and how are we supposed to do that when the government’s belt tightening exercise has ruthlessly cut vital support services and payments for people with special needs while the long-term needs of autistic individuals hasn’t even been addressed?
I don’t know if turning blue on Autism Awareness Day will make a blind bit of difference. God knows, I have been blue enough especially when I reflect on the following facts from www.autismspeaks.org
•Autism now affects 1 in 110 children and 1 in 70 boys
•More children will be diagnosed with autism this year than with AIDS, diabetes & cancer combined
•Autism receives less than 5% of the research funding of many less prevalent childhood diseases
Don’t get me wrong. I think it is a good thing to raise awareness. Lighting up blue is a statement of solidarity, a way of saying, “We support you.” Who knows? Blue awareness may blot into the conscience of those that have the power to light up our children’s lives and provide adequate provision for our autistic communities that will match their multi-faceted complexities.
I would love if it was as easy as lighting up a blue bulb but ten years of constant disappointment, disillusionment and lack of understanding for the autism community has shaped my nonchalant attitude as I continue to care for my autistic son with a ferocious compassionate burning love—Yes Mr Tony Humphreys—LOVE ACTUALLY. After all, my son’s walk in this life is much more challenging than mine. For my son, I would light up the sun, the moon and stars if I could. There is nothing that I haven’t done and wouldn’t do to ensure that he is treated as a full and complete human being—not as a set of problems encompassed by a single word—so that his ability and interests are nurtured and celebrated throughout his lifetime.
Will I get excited and feel confident that lighting up blue will bring the change I want to see for the autistic community? I don’t think so but at least it is a start. Change begins with awareness. Autism Awareness Day will come and go. For families affected by Autism, Autism Awareness Day is every day, not once in a very blue bulb…err moon.