Mum notes lack of autism support
ALISON Jackson feels she may have been in a better position than most parents when she found out she was the parent of a child with autism.
Because she was already the mother of a 17-year-old girl, Alison began to notice some odd things about her son Phoenix's behaviour at an early age and began agitating to get some help for it.
"As a baby he didn't sleep, was constantly vomiting and had lots of nosebleeds," Alison said.
"I knew something was not right. It started to gel that there was a problem and I began to push for a diagnosis."
Not that it did a lot of good.
Alison took Phoenix, then aged under two, to a hospital and a doctor but neither would give her a referral to take her boy to a specialist.
Phoenix continued to show worrying signs. He had trouble talking and was not saying sentences until he was about two-and-a-half.
But by the time he was three his speech had regressed to the point that he had stopped talking.
As Alison was to learn later, this was a classic autism indicator.
Most worrying for the parents was Phoenix's increasingly aggressive behaviour, particularly towards his younger sister, Azari.
"He was head-butting, biting and punching, being very aggressive, mainly towards Azari," Alison said.
But still most of the advice she was getting about his bad behaviour was because "he was a boy".
But things took a turn for the better when the struggling mum took Phoenix to day care.
Alison said Julie Wickham from Clarence Family Day Care had put her in touch with Dr Lawrence at South Grafton Clinic who recommended she see a paediatrician.
"She said that if I thought something was wrong I should see someone about it," Alison said.
From there Alison and Phoenix went to see Coffs Harbour paediatrician Dr Naidoo and from there the Sydney Children's Hospital, where doctors confirmed Phoenix had autism.
"When Phoenix's dad heard that his jaw dropped. I don't think he said anything for about two hours," Alison said.
That happened in September 2010. Since then Alison has come to learn first-hand about the lack of services for children with autism and their parents in the Clarence Valley.
"As a parent of a child with autism I have to be his advocate," Alison said.
"Wherever you go - for speech therapy, occupational therapy, early intervention, respite care - you are put on waiting lists.
"You've got to push to be heard. If you're nice and polite, you just get left."
She said there needs to be more awareness of the problems facing parents with autistic children and more support services for them.