A Hunter autism group has urged the Albanese government to show compassion, amid concern that thousands of the region's children will be denied NDIS funding in future.
The government has flagged that changes will occur to the way children access autism support, as it moves to tackle soaring NDIS costs.
More than 7400 people in the Hunter - mostly children - now receive NDIS payments for autism, a 7 per cent rise in a year.
Hunter Autism Support Group founder Tracy Ellem said the government should "really think about the effects that cutting autism funding would have and the cost benefits of keeping it".
"I'm fearful they'll stop funding or make it harder to get," Mrs Ellem said.
"I appreciate that there's been growth in the NDIS, but people are going to gravitate to the help if they can get it.
"Autism affects the whole family unit, not just the child in isolation."
Parents and carers found it difficult to care for autistic kids "on top of working and every other thing".
She said the government should "think about what they can offer affected people before taking away funding".
NDIS data shows that the average six-monthly payments for those with autism in Newcastle was $18,624.
This funds things like occupational therapy, speech therapy, physiotherapy and psychology, along with employment, housing and education programs.
Autism has the highest number of NDIS participants in the Hunter by primary disability, followed by those with intellectual disability [3460], developmental delay [3448] and psychosocial disability [2242].
Some research has suggested the system is getting better at identifying children with autism at earlier ages, leading to better outcomes.
But other research found it was "plausible" that NDIS financial incentives were a "key factor" in Australia's diagnosis rates being among the highest in the world.
Bill Shorten, the NDIS minister, indicated this week that changes would occur to the way children access autism support.
Mr Shorten is seeking to reduce NDIS costs, which projections show will rise from $34 billion in 2022/23 to $44.1 billion by 2024/25 and $89 billion by 2031/32.
It was reported in May that more than 8 per cent of 5 to 7-year-old children are NDIS participants.
Mrs Ellem's son Hamish, 19, has autism. He was diagnosed at age 7.
"We had to self fund his diagnostics until he was granted NDIS funding in his early teens. We were part of the NDIS pilot in the Hunter," Mrs Ellem said.
Mrs Ellem said she'd like to know what Mr Shorten's comments mean for the autism community.
Mr Shorten said "any reforms would focus on future participants".
"I want to reassure participants and families that we are not going to change things overnight and there will be a transparent transition that we work on together," he said.
The federal government commissioned an independent review of the NDIS, marking a decade since its introduction, with a report due for release next month.
"Our intention is to make sure the NDIS becomes a more human, less bureaucratic experience. We want to make sure shonky service providers are given short shrift," Mr Shorten said.
He said changes would aim to ensure that "every dollar gets to the people who need it most" to improve outcomes for people with disability "over the course of their life."
