One of the most vulnerable and crucial periods for an autistic person is adolescence, as they navigate a world of changes and the transition to adulthood.
Eliza Tait, who was diagnosed with autism at 14, describes it as having to take on a full-time self-advocacy role.
"I really had that period of struggle," the now-18-year-old told AAP.
"Part of autism being that I really struggled with my emotional regulation."
For Eliza and many like her, the challenges can become too much, with the university student ultimately finding herself hospitalised with anorexia.
"When you hear the same story over and over, and when policy could stop that, it's really heartbreaking," she said.
The federal government revealed in April it intended to either remove or divert 350,000 people from the National Disability Insurance Scheme by 2031.
Autism accounts for the highest participation rates in the scheme, with more than 300,000 people receiving assistance, most of them younger than 18.
In response to a three-day Senate inquiry into the NDIS changes held during the week, state and territory leaders played down their responsibility, saying some people with disabilities could end up with no access to services at all.
One of the few disability support programs agreed upon outside the NDIS is the state-run, jointly federally funded Thriving Kids program.
Targeting the peak cohort of NDIS recipients for autism - kids younger than eight - Thriving Kids requires no diagnoses and prioritises family-centric, community-based supports for young people requiring low to moderate support.
Despite being widely welcomed, the program applies only to children aged eight and younger, leaving a perilous gap for those still in need of support.
It's not clear what services will be available to young people once they age out of Thriving Kids, said Lauren Stracey, who heads advocacy group Youth Action NSW.
"We know that disability doesn't just vanish when a kid turns nine," she said.
"In fact, it's those major adolescent transition times - like starting high school, changes in terms of the way that they socialise - that are some of the most important times to have the right supports in place."
While federal and some state governments have said support outside the NDIS would be available, a reluctance to adopt funding responsibility has left uncertainty.
In May, the NSW government declined to adopt several bipartisan recommendations from a parliamentary inquiry, including that it develop and fund dedicated transition pathways for children aged nine and older who are eligible for disability support.
A recommendation to embed supports in schools was not supported by the government, which said in some circumstances, services would be provided alongside schools.
Ms Tait, who gave evidence to the NSW inquiry on behalf of Youth Action, was disappointed by the government's response.
"We're talking about really some of our most vulnerable kids, and so we were really hoping to see more influence from this," she said.
Ms Tait said funding saved in the short term would be paid back later when others like her relied on services to get them out of an avoidable crisis.
"Without disability support, we see our mental health system really take on the majority of that burden," she said.
"And without that early intervention, you're really damaging people's chances in their most vulnerable years."
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