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Steven Joyce opens up about life with autistic son - 'It’s a wonderful, life-enriching sort of experience'

April 2, 2019

The former finance minister is a patron for autism charity Minds for Minds.

Autism spectrum disorder is not well understood, yet it's estimated that one in 64 people globally are diagnosed with ASD.

Minds for Minds Charitable Trust researchers are currently working to understand the causes of autism. As part of Autism Awareness Day, former finance minister and Minds for Minds patron Steven Joyce joined TVNZ1's Breakfast this morning to talk about his personal reason behind becoming a patron for the charity - his autistic, non-verbal son Tommy.

Mr Joyce explained, "I have a son, Tommy, who’s nine, who is on the spectrum and he can't talk and he has lots of other challenges like a lot of other young people with autism, and we need to know a huge amount more".

He said that more research is needed because, despite the large number of specialists in the country, you "really don’t know" the challenges people like Tommy are faced with.

"We're learning more, but it's still a bit of a mystery, and we're actually having a few issues with Tommy at the moment...What's telling with that is you really don't know, despite all the best specialists and all that around the country...what he's challenged with."

However, Mr Joyce stressed the "great support" his son has been receiving – and how he's "like any other kid".

"We have great support. He goes to a special school and the bus comes to the front door and picks him up in the morning, but he's like any other kid – doesn't want to get out of bed and he's one of the late-in-the-day kids, so he gets up and then he has his breakfast and trudges off to school and then he comes back afterwards, but he doesn't talk.

"You've got to divine a little bit, but the good thing about Tommy is he will always – he's got very good non-verbal communication, so you don't go around wondering what Tommy thinks. If he wants certain things, then he will let you know."

He added that one of the challenges of raising an autistic child is there's "absolutely no rules - it all just gets rewritten for you constantly".

"In many ways, it’s a wonderful, life-enriching sort of experience to have somebody with you who's got such a different perspective of life as Tommy does … Autism presents itself in a huge range of different ways, so our experience will be entirely different from another family's experience. So that's one of the challenging things, actually, because there's no road map – there's no sort of, 'Well, your kid's got autism, therefore, this will happen, this will happen'. In fact, with families with autism members will tell you there's absolutely no rules - it all just gets rewritten for you constantly."

Mr Joyce said Kiwis need to be more aware and understanding of the challenges faced by autistic children and their families.

"Always be understanding. One of the great things with a young kid with autism is like other kids. They have their moments, and there's nothing like being in a supermarket when an autistic kid has a meltdown, and it's very, very hard to work with.

"What it teaches me is that you actually should be a heck of a lot more understanding of what’s happening in other people’s lives, and other people's kids' lives because you make judgments. People make judgments, like, ‘Oh, kids behaving badly,’ but they don’t know what’s really going on, so just be a bit more tolerant and understanding of some of the challenges that families go through."

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