Are we getting autism diagnosis right?
When a child is slow to walk and talk, alarm bells can start to ring for mums and dads who know instinctively that something is not right.
In many cases, concerned parents are comforted by doctors who say it’s nothing serious and all children develop at different rates. And perhaps the child goes on to grow up normally.
But for some children, these developmental delays can be the first signs of something that can stay with them for life.
Getting an autism diagnosis can be a confronting experience for a child.
Cain Noble-Davies, 22, was just seven years old when he was diagnosed with autism, but he remembers it like it was yesterday.
“The immediate question that came into my head was, ‘what’s wrong with me?’
“Being told right there that there is something that objectively makes you different from most other people is pretty hard for a kid,” he tells guest host Sarah Abo on this week's episode of Insight.
The impact of an autism diagnosis is also felt by parents.
For some, it’s a welcomed answer to difficult behaviour or even aggression from their child in their early years.
When Cain’s mum, Gretchen Broer, was approached by the school principal who suggested Cain might have autism, she jumped at the opportunity to get an answer.
“I grabbed that with both hands and as soon as I could, made an appointment with a paediatrician and it was a very short process of diagnosis.”
For other parents, it’s a devastating prospect that their child may not be like other children, and their doctors don’t really know why.
Josephine Akel’s five year old son was diagnosed with autism recently, and she questioned if his autism was her own fault.
“I thought I had done something wrong, either the way I’ve raised him … or my health. I did feel guilt that I had done something.”
For some, an autism diagnosis is the only way to get much needed funding for their child’s needs.
Peta Hanney’s daughter has a rare genetic disorder which results in symptoms very similar to autistic traits, but is not recognised under the current funding system for disability.
She was told the only way she could get government assistance for her daughter’s developmental problems was by getting an autism diagnosis.
“It was just a ticket for us… we'd already been through five years of keeping this child alive, a piece of paper that was going to help her at school was pretty much all it was."
Paediatrician Dr Michael McDowell says the current disability funding system is unfair, and does not recognise other developmental problems children suffer with and desperately need funding for.
While the system has problems, Michael believes that parents and doctors are just doing the best they can.
“Parents just love their kids, and want to help their kids, and to some extent the diagnosis gives them an explanation … but it's more than that, it's a pathway.”
This week Insight looks at what an autism diagnosis actually means - for individuals, for families, for clinicians, and for the healthcare system.