ASD is for life: just like having grey eyes, or short fingers. We can choose to change these things of course, if we want to; mask them with coloured contacts or long fingernails. But underneath they remain the same, our secret. Our global community accepts that eyes and fingers come in a variety of colours and lengths. We accept that some people are great at Maths and logic; others excel in creative pursuits of art and music.
So, why can’t we accept difference in the way people process the world around them? Why must only one way be “acceptable” and everything other than that way be deemed “unacceptable”?
From his very first breath, our son with ASD taught us that there are hundreds of alternate ways to feel joy, view the world, to raise a child. We learnt very quickly that we would never tick any boxes on society’s “parenting norms” list. But we also learnt how to find the hidden pathways and tracks that lead to success for us.
Still, for many years we felt pressure from without, to conform… to try to make our unique child remold himself to fit society’s view of normal. To make the glorious butterfly he is, return to a chrysalis, and begin again.
There have been many moments across the years where I’ve felt acute sorrow at life’s ability to be unfair, but never as much as when I realized that all the barriers I was bulldozing down in front of us, were instantly reforming behind us. This realization occurred 6 months ago.
We were the family whose son didn’t get invited to birthday parties, or for sleep-overs or play dates. We were the parents who watched our 7 year old sit in the driveway waiting for 2 hours for his birthday party guests to arrive – certain that they would come at any moment, because “they’re my friends Mum, they said they’d come”.
We’re the husband and wife, whose 9 shared siblings never mention the “A” word; never acknowledge it’s existence; never ask about our work; change the subject when we tell an ASD anecdote; who never acknowledge the similarities in behaviours in their own children and grandchildren.
Here we are – 25 years into our journey, and what’s really changed? Well our son is certainly achieving awesome goals in his life and smashing some of his personal goals. The violence and aggression is gone, thankfully. He and his sister have repaired their relationship, and roles have reversed a little – he seems to be mentoring her now, guiding her in her ongoing battle with anxiety.
As parents, we know that our roller coaster ride through life is a forever thing, and we’ll ride those highs like bitches dancing on the clouds. Just as we’ll endure the lows with dignity and patience, knowing that we’ve survived before and will again. And we know that we’ll manage to find humour, even in the darkest moments, because that’s he we deal.
But in the world – out there in our global community – what’s REALLY changed?
Is society embracing neurodiversity? No.
Are all children and adults being educated about the extraordinary skills and talents possessed by those on the Autism Spectrum? No.
Do schools, classrooms and institutions frown on conformity and sameness and encourage uniqueness, creativity and passion? No.
Are individuals on the Spectrum, regardless of age, feeling accepted, valued and respected…. just as they are, and for all that they are?
Does society realize they’re not broken, they don’t need to be fixed?
In bedrooms, backyards and homes around the world 7 year olds with ASD are still feeling excluded – still crying hot tears of indignation, because they were the only one snot invited to the party, because the other Mums don’t want their kids “catching” those behaviours.
Shame on us!
©Nelle Frances 2016