For more than a year, Renee has been trying to get occupational therapy for her seven-year-old autistic daughter who suffers from after-school meltdowns.
The South Australian mother, who asked that her surname not be published to protect her family's privacy, was advised that occupational therapy (OT) could help her daughter regulate her emotions and not become physically violent.
But living in a rural town in the Barossa Valley has meant that the family's wait for OT through the National Disability Insurance Agency (NDIA) has blown out beyond a year.
"I've been waiting for OT for her since October 2022, so I think that's 15 months," Renee said.
While the seven-year-old currently accesses speech therapy and psychology treatment, an occupational therapist would teach her to emotionally regulate after a day at school.
"My daughter masks [her emotions], which is very common for autistic children, particularly girls," Renee said.
"If she is really on fire, we get a lot of verbal abuse … by me being her safe place, I cop everything because she internalises everything during the day.
"There's been a couple of times things have got physical.
"She's not developed those skills she would develop to regulate her [emotions] using OT …. sadly, we're still waiting on that."
Flinders University professor Robyn Young, a specialist in autism spectrum disorder, said emotional outbursts are caused by many things, including sensory overload.
"Often people try to camouflage or mask those behaviours, so at school, they're trying so hard to fit in and blend in, and when they get home it's overwhelming and they have a massive meltdown," Professor Young said.
"It's like a kettle, eventually it's going to boil over, so if you turn the heat down early enough and recognise what the signs are, then hopefully that will prevent the meltdown in the first place."
Long road to services
Renee said she has been forced to go to Adelaide, more than an hour's drive from home, to access therapy services for her seven-year-old and other family members.
"We just don't have the therapists here, living in the regional area, we just can't get them here," she said.
A spokesperson for the NDIA said it is a priority for the organisation to provide disability services to people no matter where they live.
"The agency understands the challenge of finding disability support services for participants living in rural and remote areas … and is committed to working with communities and stakeholders to address market gaps," the spokesperson said.
Professor Young said sometimes access to telehealth for appointments can help autistic people emotionally regulate.
"One of the positive things to come out of COVID … is people did move towards telehealth a lot more, including OT, so services may be available outside of your district," she said.
How to prevent a meltdown
Professor Young said preventing a meltdown is always better than fixing one.
"Try to identify what the triggers are, and the things that we can control in an environment that might reduce that overload on the person, so they don't have to cope with so much," she said.
Meltdown triggers could include what a child was wearing at the time of the meltdown which made them too warm, or what kind of lights were in an environment that might have sparked a sensory overload.
"What we really want to do is recognise what the triggers are and avoid them in the first place," she said.
"[A meltdown is] distressing for the parents, but it's also very distressing for the person involved."