Some children with autism are waiting half their lives to get a diagnosis, only to go on another waiting list for on-going support, according to the advocacy organisation Altogether Autism.
Ministry of Health figures in the last five years show the number of pre-schooler and school age young people getting funding for ASD has grown by 55 per cent, but Altogether Autism says there are many more children and young people who aren't even counted as they are not able to get a diagnosis - let alone further support.
Photo: 123RF
Kathryn Ryan talks with Whakatane mother Nicola Hayward, whose six-year-old son has autism and a range of other developmental issues and from next year will have no support at school.
National Manager for Altogether Autism, Catherine Trezona, also joins the conversation.
Nicola says her son was diagnosed when he was three-years-old and the family has waited another three years for him to be diagnosed with ADHD and oppositional defiance disorder.
“He looks like a normal six-year-old, he goes to school, he’s in a mainstream class, but he cannot use a spoon, he can’t open his lunchbox, he needs to be reminded to drink water.
“He has all the needs of a toddler, but he’s a six-year-old,” Nicola says.
She says the family gets funding for respite care, which is 52 days a year and works out to $9.50 per hour – well below minimum wage.
Nicola says she’s lucky to have a mother-in-law who can take her son occasionally, but it’s not enough for her to get a proper break.
She says education has been a nightmare, with her son going through four different daycare centres due to behavioural issues.
He started school when he was five and is now onto his third school.
“He swears at his teacher, he hits people, he throws things around the classroom.”
Nicola says that as of next year he will have no funding at school for teacher aid after it was decided he was too intelligent to need it.
“This is because, as a parent, I’ve worked really intensively to get my son to talk, to get him to use the toilet, and he’s now reading some words and writing his name. Because he can do those simple things, he’s classified as too intelligent to get any funding.
“This is a child that cannot feed himself, that needs to be reminded to drink, that needs a straw to drink, he can’t sit down for more than five seconds at a time.
“He will be in a mainstream class, he will be treated like any other seven-year-old.”
She says if it doesn’t work out at the school, she will have to look at home-schooling her son. However, she says he’s a social kid and capable of learning and would be better off with his peers.
Catherine says that, sadly, Nicola's story is not untypical.
“Families are telling us, as Nicola has told us, that the wait times between a GP consultation and a diagnosis can take quite a bit of time – an estimated 10 months to three years.”
Catherine says that even with a diagnosis of autism, families are only eligible for assessment for support, not support itself.
“It’s very hard for families who’ve waited several years for a diagnosis, only to be on another waitlist and then to only be told, ‘you get some respite hours’.”
She says there are a lot of other things that could be improved aside from money and care.
“Perhaps part of it is a societal obligation to take some time, listen to interviews such as we’ve heard with Nicola, to think about what it means as a society where we have neurodiversity.
“Autism is a complex neurodiversity and it has a mix of abilities. I think all of us can take an opportunity to learn more about what it is to be autistic,” Catherine says.
