Steve Drakoulis’ son George was diagnosed with autism at two-and-a-half. At that stage, the father of two knew next to nothing about autism.
“All you know is that it’s supposed to be a disability and nothing of what you hoped for, for potential future for your child is now realistic. You’re in a bit of a panic,” Mr Drakoulis recalls.
At that stage, Mr Drakoulis was a stay-at-home dad; he had wanted the chance to stay home with George and his sister before they went to school. To better understand the diagnosis, he joined support groups and enrolled into short courses. With no support group in his local area, he decided to start one himself, and found himself “learning just as much as everybody else was being helped”.
“There were about a hundred families loosely connected through me and I realised that there’s something going on, there’s a need here,” he says.
When the time came for Mr Drakoulis to return to work, he was faced with a dilemma: return to the corporate world or continue with the work he had started, that would make a difference in not only his life, but those of others. The decision was simple.
Unfortunately people still largely think of autism as a disability and think about the limitations of autistic people rather than their abilities.
Mr Drakoulis registered the Autism Community Network (ACN), a not-for-profit that has since grown to cover 18 regions across New South Wales, having recently expanded to Bathurst and Goulburn thanks to funding from the Federal Government, offering over 30 support programs – all of which are run free of charge.
“It was a really hard slog for us; every quarter when we had to pay fees for different things, or every month, our bank account was emptied. So I vowed that if I was going to do this, we’re never going to charge other families to help them.” Now in their ninth year, he is proud to say he has remained true to his word.
What truly makes the ACN unique is that it is run entirely by volunteers with lived experience of autism.
“Professionals certainly have their place and they’re great at what they do. But I can tell you, as a parent it’s valuable for me to have another parent telling me that it’ll be alright, that they have been through what I’m going through,” Mr Drakoulis says.
A particularly successful aspect of the ACN have been its Kid’s Clubs, borne out of a New Year’s resolution.
“My son started out as a child who didn’t know how to play with other children, he would hide in the bushes in the backyard and giggle cause he enjoyed seeing the other children playing, but he had no clue how to get involved, how to engage with them,” Mr Drakoulis recalls. “George would have been about eight or nine at the time, and I said ‘this is the year my son will make a friend’.”
That’s how the first Kid’s Club came about. The children would come together, play in the park, and over time they felt more and more comfortable with each other. Eventually young George, as well as other children, started to develop the confidence, and from that friendships blossomed.
“The most important thing I say to people is you’ve got to get your kids out of the house and into suitable social environments. Doesn’t matter how good they may be academically; their ability to survive in the world depends largely on their ability to connect with other human beings.”
These days, George has not one, but many friends, and is highly involved in the ACN, co-facilitating youth clubs.
“He has so many of the same opportunities as any other child his age deserves to have,” the father says.
But with George soon turning 18, Mr Drakoulis has realised there are very few spaces in society where autistic adults can go and feel comfortable. To help, he has partnered with Different Journeys in Melbourne to start Sydney’s first adult social club. It gives young and old adults on the spectrum the chance to come together every month and have a night out on the town.
“Organisations, the government, they all think about how they can help our beautiful little ones and that’s great. But they forget that our beautiful little kids grow up into very lonely, isolated adults and there’s a lot of mental health issues,” he says.
Thinking back to the first day of George’s diagnosis, Mr Drakoulis can say without doubt that he is feeling a lot more optimistic about his son’s future. But it is the mainstream community that the father says needs to change perceptions.
“Unfortunately people still largely think of autism as a disability and think about the limitations of autistic people rather than their abilities,” he says. “Somebody recently gave me a wonderful example; when you meet somebody new, you ask them what are they into? Basically ‘What are you good at? What are you interested in?’ With an autistic person, you want to find out what they’re bad at, what their deficiencies are, and that’s backward. Ask my son what he is good at, you’re going to find out he’s good at a lot of stuff.”
At the end of the day, the goal is inclusion. But before that can be achieved, there needs to be greater awareness, starting with education.
“Our children suffer great levels of bullying and exclusion. Some schools are absolutely wonderful, but others are just not interested,” he says. “Our kids don’t fit into a particular mould. You have to educate a child based on their strengths, and they’re not doing that yet.”
In the interim, Mr Drakoulis urges parents to play their own role, by leading by example for their children in how to be accepting of differences.
“Just teach your children to be nice, to say hello, to ask somebody if they would like to play; it all starts from there. The more they get to know our children, the more they’ll find that they can bring a lot of loveliness to their environment.”
Having a child with autism has no doubt come with its challenges. But as is the case for any parent, the experience has also brought with it life lessons, changing Steve’s own perception and understanding of the way he engages with the world.
“These days I find I don’t let myself get caught up in stuff that really doesn’t matter. There’s very few things that really matter in life. We worry about what we’re going to wear and how people are going to perceive us; I just can’t be bothered with that. Just enjoy the simple things in life.”
For more information about the Autism Community Network, click here.