There are more than 30,000 children with autism and related disorders living in regional Australia competing for limited spots in support schools and programs.
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Outside the big cities it can be next to impossible to get a diagnosis, let alone support, with only 40 per cent of kids in need getting places in special schools or special classes.
Melissa Reinikka's son Jacob, 8, is one of those battling to get the support he needs.
He is one of 30 students who have been deferred for a support class in the Tamworth region in NSW's north east this year alone.
Jacob was assessed last year as being eligible for a multicategory class - a class for children with autism, emotional disturbance and moderate to severe intellectual disability or physical disability. It's a smaller class where a teacher and support officer provide personalised learning and support for students.
However, Jacob remains in a mainstream class.
"He currently, academically, he's not where he should be," Melissa said.
"We're still reading home readers that I feel like I've been reading for years."
Both Melissa's two children have been diagnosed with autism, anxiety and some intellectual delay. But it took years for Melissa to get her children diagnosed.
Melissa said the wait list to see a paediatrician in Tamworth is two years, a common problem in regional towns.
"It was mainly school stuff we thought, until we realised, this home stuff is not what everyone deals with," she said.
But a diagnosis alone doesn't automatically place children like Jacob into a support class.
After layers of bureaucracy, claims go to a panel which is meant to get children into the right class at school.
Students are prioritised by need, and with regard to available spaces.
Melissa is a nurse and in a sense, she understands.
"It's kind of like when a patient comes into the emergency department with a cut finger and someone comes in with a heart attack. They go first," she said.
Jacob gets anxious about the bus to and from school, but Melissa's requests for assisted transport have been rejected.
Despite being eligible for a support class, Jacob would only get assisted transport if he was actually in one.
"I find that very baffling that I can't apply for that, and I have asked several people within the school and the department. No, it's just how it is," she said.
Melissa has seen firsthand the difference it makes to her son when he gets the support he needs.
The principal at Jacob's primary school set up an unofficial class to address the demand for kids who needed support. Melissa said it was amazing.
"He was so happy he would skip in the gate," she said.
"There was no anxiety on my part or his most of the time [about if] he was going to make the day. Let alone the week."
But that class is no longer available after the teacher who led it left the school.
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Dianne Byers, a primary school teacher and officer responsible for students with disability policy within the NSW Teachers Federation, said she's seen this a lot.
"When governments don't step in and provide the resourcing that we know our students need, we'll often provide it ourselves," she said.
According to Ms Byers, there are structural deficiencies fundamentally driven by the lack of recurrent funding for students with disability.
"[Teachers] are exhausted. They want recognition for their expertise. And we need the support of the government.
"These students in particular, our most vulnerable, they need to be supported so that they can go on to lead successful lives."
Not all autistic kids need a support class, although many, like Jacob, also have co-occurring intellectual disabilities. But it's not necessarily about intelligence, the support classes are needs-based.
Tasha Parry's son Dylan, 11, has been diagnosed with autism, oppositional defiance disorder and anxiety.
Tasha knew her son was different by the time he was two, but it took a very long time to get him diagnosed.
The only reason he got in to see the paediatrician, according to Tasha, was because the police took out an AVO on him to protect her.
"It took my 11-year-old child going to court for the magistrate to say this is ridiculous. Within two days we had an appointment at the paediatrician," she said.
Tamworth has a specific purpose school, Parry School, focused on supporting kids with behavioural issues. Tasha is facing challenges getting her son into Parry.
"There's usually a waitlist for Parry, but I believe the way that works at Parry is that kids have got to get suspended so many bloody times before they'll take them," she said.
According to the Department of Education, there may be some vacancies at Parry School in the near future due to a continual cycle.
There is no school for specific purposes focused on autism in Tamworth. Tasha said if there was, the spots would fill up.
A doctor suggested Tasha move to a city to get Dylan more support. But it's just not feasible for her.
"My whole family support system is here. I wouldn't survive on my own with Dylan," she said.
Amanda Barton is a proud autistic woman and mother of three autistic children living in Mildura in north west Victoria.
She grew up in the bush, on a 1000 acre block in Canyonleigh in the Southern Tablelands of NSW. Amanda said there are benefits to living in a small town when you're autistic.
"I found that so much better because I didn't have to deal with people. I didn't have to worry about fitting in. I had my horse and I'd go for a ride and attend to animals," she said.
Amanda was only diagnosed at the age of 30, after her daughter was. She now has an occupational therapist, a speech pathologist and a psychologist, but missed out on that support when she was a child.
"Even though I'm using these services later on in life, it's still beneficial, but it would have been so much better if I got on when I was younger."
According to Tasha, the health system in Tamworth "is a joke", there aren't enough appropriate services and the financial implications of specialist services in regional areas are heavy.
"It's really frustrating because people don't see everything you're trying to do behind the scenes," she said. "You're the worst parent in the world because your son's done this and you're not doing anything to help him. I can't go to any more lengths, my hands are tied," she said.
Dylan's NDIS support coordinator is putting in a change of circumstance form suggesting Tasha is considering relinquishing care to get him more funding.
"Sadly, you relinquish care of your kid, they'll get to the top of the list, every service they need," she said.
"You shouldn't have to say s--t like that to get what he's entitled to."
Since 2015 the Education Department has invested $290 million to support student well-being and mental health in public schools across NSW.
In a statement a spokesperson for the Department said it provided 109 courses to upskill teachers in the children with disability priority area, adding that 950 school staff in regional and rural areas have completed one of these courses in the past 12 months.
Melissa said she's frustrated.
"No one should have to fight this hard to get what comes so easily to every other child," she said.
"I just want my son to enjoy school, enjoy going to school, enjoy learning."
Listen to the full story on the podcast search Voice of Real Australia, on Apple Podcasts, Spotify or your preferred platform. You can also listen on the web player above.
Eva Baxter
Eva is a Northern Daily Leader journalist based in Tamworth. She covers health, politics, energy, arts & entertainment, business, community, and a bit of everything else.
Eva is a Northern Daily Leader journalist based in Tamworth. She covers health, politics, energy, arts & entertainment, business, community, and a bit of everything else.
