By NICOLE ROGERSON
For me, it was never about a light.
It wasn’t even about the colour blue.
So how did I get here – in a very public spat with the NSW Premier?
I am mum to Jack, a beautiful 17-year-old young man with autism.
My day job involves running an Early Intervention Centre and in my spare time, I volunteer as CEO of Autism Awareness Australia.
April 2nd is the United Nations World Autism Awareness Day and iconic buildings and landmarks around the globe will be turning blue for the global awareness campaign ‘Light it Up Blue’. I wanted Australia to join that campaign, so in 2011, with the help of the then State Government, we lit the sails of the Sydney Opera House blue-ish…
You see, the trouble with the lights on the Opera House is that they don’t work very well for the colour blue.
So this year, we requested the State Government stump up for projection, so we could get this thing bright blue.Finding out last Tuesday, less than a month before the event, that the Premier was only willing to support the original blue-ish level of lighting was a bit heart breaking.
You might think this is just semantics but the Premier’s decision to only support second rate projection is a painfully perfect metaphor for the second rate support given to people with autism in Australia.
And for me – it’s personal.
In 2007 the Australian Government published Best Practise Guidelines for autism that clearly stated children needed a minimum of 20 hours a week of autism specific early intervention. The problem is, the Federal Government only funded 1 hour of early intervention.
So only families with enough money, are able to provide those additional 19 hours needed. Early Intervention programs that meet best practice guidelines cost around $50 000 per year per child.
In my work, I travel around Australia watching the very real challenges families of children with autism face. I see little dudes who have amazing potential, go unrealized because their families simply cannot afford the enormous costs associated with quality early intervention.
I watch people slogging it out, doing graduate level parenting. I dismay at education departments letting children down, simply too under resourced; I witness teens and adults struggling to get into the workforce. I see aging parents worry about who will take care of their children when they are gone.
Can we easily fix all of that? No, we can’t. But my organisation Autism Awareness Australia CAN join a United Nations global awareness campaign and along with the rest of the world, light up an iconic building, so those families feel, that even for just one day, society recognises their very real lives.
So much of the conversation and policy around autism concentrates on the little ones, the importance of early intervention and we often hear narratives from parents struggling to raise their challenging children. That discussion is important, but I am here to tell you don’t grow out of autism. It doesn’t magically all work itself out. Kids with autism get bigger.
With 1 in 100 children being diagnosed, it is a piece of public policy we better start getting better at – because at both the State and Federal level, the services simply aren’t good enough.
Nothing can prepare you for the day you sit in a doctor’s office and they first use the word autism. It is the stake through your heart, the words that once said, are now your new truth.
No going back.
Here are the tissues, good luck.
So you head off, largely on your own. You do your research, you work it out. I appreciate that everyone carries their own personal expectations and what they consider to be a level of success. I am sure some people look at Jack with me and think ‘oh that poor woman, she’s got that disabled child’. Whereas, I think I’ve got the best kid with autism in the world.
He is divine, a great son, brother and more importantly a great human. His commitment to social justice is nothing short of astonishing! But it was bloody hard work getting him there. We did it together he and I; we have a bond stronger than steel.
I know, deep in my heart, that if children receive good quality early intervention, they can reach their best outcome. If you’re ever lucky enough to meet my Jack, you might think he is somewhat like Forest Gump, and I am a lot like Sally Field.
Jack’s outcome was anything but assured. Autism is a vast and wide spectrum and trying to capitulate it wont get you anywhere. But here is a fact you can’t argue with… I don’t know a problem that gets betters by leaving it alone. Get stuck in, do the work, don’t let autism have the last say in your family, we kicked it out of ours.
So Mr O’Farrell – if you won’t help us turn the Opera House blue that’s fine, we’re used to going it alone.
We’ll do this ourselves.
This week we launched a Crowd Funding campaign at www.lighitupblue.com.au
We need 40 people to donate $1,000 each or 400 people to donate $100 each, or 4,000 to donate $10 each. No donation too big or small.
We need your help.
Will you help my community and join our cause? Can you spare a donation? Come on, you can’t take it with you! Go to the website, donate a little something and help us show those families across Australia that they matter, that we know they’re doing it hard and that we can shine a light on Autism.
Nicole Rogerson is one of the co-founders of The Lizard Children’s Centre, an intervention facility for autism, and a founder of Autism Awareness, a not-for-profit group advocating for increased government funding for autism treatment.