This month, a Blacktown mum Fawziya Adam was sick and had to go to the doctor.
The mother of five was a carer for her autistic son. Instead of taking him to the doctor with her, she decided to chain him up.
“I used to take him everywhere with me,” she explained to Fairfax, “but now he is strong.”
“This time I was scared because the last time he ran away and pushed me and people in the street and the chemist. That’s why I didn’t take him with me.”
The boy was discovered chained in the home by workers from Josephite Community Aid after they made an impromptu visit. They heard the boy calling out and tried phoning his mother numerous times before contacting emergency services who freed the boy and took him to hospital.
His mother said said when she returned home and saw what was going on she became scared, thinking there had been a fire.
She was arrested and later released without charge. "If I didn't tie him like this, he would run away in the street, no coming back. He would go and not stop," she explained. "The cars are dangerous and he doesn't understand about cars. That's why I was scared, the cars would hit him."
Our country is in crisis when it comes to Autism Spectrum Disorder (ASD). It is now the most common developmental disorder in the country, with 1 in 100 Australians affected. Nicole Rogerson from Autism Awareness Australia says Ms Adam's story has highlighted just how much some families are struggling. "The horrific stories we have heard only prove that more," she said. "Families are in crisis, children aren't being given appropriate intervention and now we can say lives are being lost. We have a lot more work to do."
ASD is known as a "complex developmental disability" that affects the brain, making communication and interacting with other people challenging. Government funding for ASD is severely limited, leaving low-income families with no choice but to fend for themselves or reliant on already overly-stretched community programs.
Adam confirmed her son should have been in school that day but she'd been too ill to take him.
The backlash against the Blacktown mum following the discovery of her son chained to his bed was immediate, made worse by the current trial of a mother charged with manslaughter over the death of her 11-year-old autistic son in 2011. The boy died after allegedly being given a cold shower and left in a backyard shed. The mum has spoken about the difficulty she and her partner (the boy's stepfather) faced in trying to care for him, saying they regularly restrained him for his own safety and that they were not coping with his care.
The reality is that when a family is caring for a severely autistic child who poses a danger to themselves and others, there is little to no support. Most are doing their best, as seems to be the case with Adam, while others fall very short.
My son Giovanni has been diagnosed with ASD. While his autism is mild, he faces challenges each day that are becoming worse.
Despite being diagnosed three months ago we are yet to begin treatment simply because we haven't been able to afford it. I assumed a combination of Medicare benefits and my own private health insurance would cover at least half, if not more, of the cost of Occupational Therapy and Speech Therapy. But I was devastated to discover that they each cover very little, around $1000 out of $8,500 each year. The majority of funding for autism treatment finishes when a child turns seven, because apparently they are magically cured at that age. The Carer's Allowance is only available in extreme cases and is difficult to apply for.