Autism diagnoses for not one but three children were “a massive punch in the guts” each time for Barwon Heads’ Kirsten Roberts.
“When you get a diagnosis of autism it’s just sickening and there’s a grieving process you go through,” the mother-of-three said.
“You’re faced with a lot of what ifs: what if they don’t finish school, can’t get a job, can’t have friends, can’t live independently… the second and third diagnoses are no easier.”
Yet Kirsten “would not take autism away” from any of her children.
“It’s part of who my kids are and my kids are amazing,” she said.
“Toby, my oldest, is a very caring, empathetic, cuddly boy.
“My middle daughter, Indi (11), is super creative, great at performing arts and quite wise in her own way.
“Our youngest son Mac (7), who’s a gifted Aspy (Asperger’s syndrome), keeps us on our toes with jokes and tricks.”
Doctors diagnosed Toby, 14, when he was seven and shortly after Kirsten discovered her husband Stuart was on the spectrum too.
“Which explained so much,” she said.
“When you first start managing a child with autism it’s an unknown because their wiring is different. It was pretty horrible for quite a number of years.
“It can be very, very lonely and heart-wrenching (to see) your child in so much pain and you don’t know how to reach them.”
Toby is high-functioning but has severe anxiety and his parents have to manage noise, stimulants and social activities.
“Living with autism is incredibly consuming – you’re alert all of the time,” Kirsten said.
But respite care and therapy made a massive difference for the Roberts family.
“It’s a huge relief to know the kids are with trained individuals who really care,” Kirsten said.
“We hadn’t had a night out for more than 12 months, because you can’t leave a child who sometimes has self-harm thoughts with a babysitter.”
Kirsten and husband Stuart had worked on themselves as parents and they were “in a really good place as a family” thanks to support, she said.
But access to good autism services was “terrible” in Geelong, she added.
“I know many families that don’t see any light.
“There is a chronic shortage of therapists. For kids that are really struggling with self-harm issues, access to the right services is bloody hopeless.
“When Toby was at his worst from a mental health perspective we chose to go to Royal Children’s Hospital instead.”
In 2017 State Government ordered an inquiry into autism support that found regional areas lacked services.
The government set aside $22.43 million in response, including a travelling forum by Australia’s peak autism body Amaze that made its first stop in Geelong on Tuesday.
Kirsten attended the forum, which she said helped educate parents on support options and gave them a voice to lobby governments.
“I want to connect with other parents who are going through the same thing.
“The more we can tell our story to organisations like Amaze that Geelong needs more services, the better it is for us.”
