Autism Advisory and Support Services founder Grace Fava started to cry when told she had been awarded an Order of Australia Medal (OAM) for service to community health.
But as is usually the case, she was thinking of other people.
“I lost my parents in the past few years and I wished they were here because they would be so chuffed,” she said.
“I was also taken back because I am getting recognition for what my whole team does and I absolutely adore what we do here.”
So what do they do?
They provide a range of services to support, advocate, help, educate and guide families who have a family member with autism as well as the greater community.
But more than that, they provide hope.
Ms Fava speaks of the “emotional roller coaster” when a parent is told there child has autism and the little part of their heart that is “broken” despite the often expected diagnoses.
Parents usually ask the same questions: What have I done wrong and could I have done anything different?
The answers are always the same
“Parents have done nothing wrong,” she said.
“When a mother is pregnant with their child they have nine months to anticipate a future of what this child’s life will be like and then you get the devastating news to say your child has a diagnoses of autism.
“What’s my child going to be like when they’re older? That’s one of the first questions we hear. Will they get married? Will they be able to hold down a job? Will they be independent?
“The great thing is we can offer that light at the end of the tunnel for parents. When my children were growing up it was different, there weren't that many services available.
“Today there are more services available. It is a different world and there is hope. Never give up hope. That’s something I wish I had when I was going through the process when my kids were younger.”
Ms Fava originally wanted to start a little autism information service from her spare room at Bonnyrigg Heights.
It was a way to help parents who were in a similar position to her –stressed, scared and not sure how to help their children after a diagnosis of autism.
Her two boys, now aged 17 and 15, were diagnosed with autism at the ages of three and two respectively.
Back then was little support for those diagnosed and their families.
“I was guided to an organisation and they kept putting me on the back of a two-year waiting list and they kept telling me it would be thousands of dollars,” she said.
“I thought this is ridiculous and when I asked it there was somewhere else that could help me now because my children need help now and not in two years, they kept self-referring and it wasn’t helping.
“Then I met a parent who had a child with cerebral palsy in the hospital waiting room at Westmead Hospital and I found out about other organisations able to give help to my children immediately.”
But more was needed. Her initial thought was, if she was having these problems – and she was born and educated here and speak the language – imagine those who don’t have English as their first language
It’s why in 2009 she jumped at the chance to move her little organisation into the pool managers residents of the old swimming pools.
A decade later, the run down termite infested jungle (with a feral rooster living at the back), has evolved into a Autism family-friendly centre.
The Autism Community House is a one-stop shop if you will. Anything to do with autism, they are there – and if they can’t help families, they refer them on to other organisations.
A key part of the service is the only 24-hour autism hotline in the southern hemisphere. They get calls from parents, professionals, teachers, overseas (who think they are Liverpool in the UK) and kids whose friends have autism.
Outside their support services, they play a key role in lobbying government and being the “voice of the people” when it comes to advocating for change.
A fair achievement from an organisation that receives no government funding and relies on donations and grants.
Not only do they support children and adults on the autism spectrum through a range of therapies and professional development groups.
They support families who have children with autism. There also have support groups in various languages.
The great thing is we can offer that light at the end of the tunnel for parents.GRACE FAVA
“We try to make it affordable and family friendly as possible because a lot of the workers have children who have autism,” Ms Fava said.
“We understand first-hand what it’s like to have a child with a diagnoses and everything that comes with it.
“So when a child is refereed from a pediatrician or the hospital, yes will discuss how can we help your child but we will turn to the parent and say how are you doing? What can we do to support you? So they are strong enough to support the child which is really important.
“It’s not just about the child, it’s about the whole family.”
Ms Fava’s recognition on the Australia Day honours list is the latest on a long list of accolades for the AASS chief executive.
- University of Western Sydney Women of the West Award (2015).
- Rotary Club of Liverpool Greenway, Paul Harris Fellow (2013).
- Joint Recipient, SWSLHD, Carers Program Better Practice Grant (2013).
- Quota International of Liverpool Citizen of the Year (2011-2012).
- Liverpool City Council Companion of the Order of Liverpool (2011).
- Fairfield City Council Australia Day Award (2010).
- International Day of People with Disability Award, United Nations (2007).
- Westfield Local Hero Award (2018).
But of all her accolades, she said her greatest achievement was being surrounded by a team of “beautiful people” who share her passion and vision.
“I never thought it was possible,” she said.
“My thing was even I could help one person, that’s one person who doesn’t have to suffer in silence . The bottom line is our families are suffering in silence.
“Nobody ever sees the really severe kids who hurt themselves and their families.”
- Autism Advisory and Support Services 24-hour hotline: 1300 222 777.
- Details: Autism Advisory and Support Service