Cameron Royall-West likes to spend his days building Lego, watching YouTube and going to the gym. The 21-year-old lives with his parents and two brothers and often helps out with household chores, including laundry, dishes and grocery shopping. Cameron is one of over 200,000 Australians living with Autism Spectrum Disorder.

Three times a week he receives a visit from an autism support worker. Together, they take part in a range of activities, including hikes and cooking classes. He said living with Autism doesn’t define him as a person. “You always have what you have – you’ll never forget who you are,” he said.

Autism is a disability that affects each person in a different way. It is often characterised by impaired social interactions and behaviours. People with Autism commonly report a need for support with everyday cognitive and emotional tasks.

Since its inception in July 2013, the National Disability Insurance Scheme (NDIS) has offered support to people with Autism in a number of ways. This support usually centres around building skills in social, domestic and professional life. On average, NDIS participants with Autism receive $32,800 in funding each year.

The Scheme has undergone a number of amendments and been the subject of a number of inquiries since 2013.

The NDIS is currently under inquiry by two Parliamentary bodies: the Joint Standing Committee on the NDIS and the Select Committee on Autism. The committees aim to improve support for people with disabilities across Australia.

The Select Committee on Autism was formed in late 2019. It is tasked with presenting a report to Parliament, focused on providing people with Autism with better support in the areas of education, healthcare, employment, housing, justice and rights. The committee has accepted submissions and is currently in the process of public hearings.

The committee has five members and is chaired by Senator Hollie Hughes. Senator Hughes is a passionate advocate for people with autism. As the parent of a child with Autism, she was inspired to fight for change.

Senator Hughes hopes the inquiry will offer a significant improvement to support for people living with Autism. “This is a turning point for every person living with Autism and every family and carer who support them,” Senator Hughes said on her website. “The NDIS has an Autism cohort of around 30% yet there has never been an inquiry into autism specifically; let alone one that is going to look at diagnosis right through to independence.”

Before being elected to Federal Parliament, Senator Hughes was the founder of the Country Autism Network, which aims to help people with Autism living in regional areas. In her first speech to Parliament, Senator Hughes said she was committed to improving the quality of life for people with Autism.

“While [my family] did not choose to become part of such a large club as the autism community, we have found it to be one united by a great passion and determination to succeed,” she said. “These children and adults work so hard every day just to get by… they just look to us in government to provide an easier path forward for them.”

The inquiry ultimately aims to develop a National Autism Strategy. Senator Hughes was unavailable for further comment on the progress of the committee.

Public submissions to the Committee have addressed some of the shortcomings of the current scheme, including a lack of focus into mental health, sexual health and employment. So far, over 150 submissions have been put forward to the Committee.

In their submission to the Select Committee on Autism, Autism Awareness Australia (AAA) quoted one parent who voiced their concern with the current scheme. “There are simply not enough people qualified and NDIS billing approved so the market power is in the service providers… there is no provider with less than a 12-month waitlist in our region,” the survey respondent said.

Cameron Royall-West has been receiving support from the NDIS over the last two months but he received an NDIS support plan long before that. His mother, Danielle Royall-West, said the process was unclear and it was difficult to determine what support was available to meet Cameron’s goals.

“We had this plan going and put it in the ‘too hard basket’ because we had no idea what to actually do with it,” Ms Royall-West said. “No one leads you in the right direction, so there’s no real resources.”

She said while the NDIS had been a good thing for their family, the application process was not an easy one. “It was really difficult to apply – we had to go through and get a whole range of psychological tests and diagnoses again,” she said. “It’s not an easy process, and for someone who potentially may not have someone to support them through that process… I don’t think that they’d be able to do it.”

The AAA advocates for early autism diagnosis and intervention as a powerful form of support. While the NDIS already implements this support, the AAA said it can be done better. In their recommendations to the Select Committee on Autism, they focus on the power of early intervention.

This may include offering children with a recent Autism diagnosis access to paediatricians, psychologists and in-school support. Statistics show children with Autism receive significantly less funding than adults from the NDIS. The average child with Autism under seven receives $16,700 in NDIS funding.

The difference is often due to support for children with Autism being available through schools or other means. Danielle said unless the system was more streamlined, it would be hard to determine the effects of early intervention for their family. “Because I’m still trying to come to grips with the services that you can actually use, it’s hard to know how that would have changed if [Cameron] had of had that at an early age,” she said.

She said the best early intervention for Cameron would be social skill development groups, but he did have many opportunities through primary school. “Early intervention in socialising and peer-to-peer playing is so important,” she said. “There were things available… so I don’t know how [the NDIS] has changed any of that.”

In their public survey about the NDIS, AAA spoke to parents of children and adults with autism who shared the opposite view. “[The] mainstream school system, whilst they preach inclusion, has failed my child due to lack of resources and teacher education,” one parent said. “Please help our children get the education they deserve, no matter how ‘difficult’ that seems to be for the school system.”

Danielle and Cameron hope the inquiry will help families like theirs to easily find what support is available to them. Cameron said that he found the current system confusing. “It’s quite new to me and it’s all different,” he said. “I’m not sure of what [support] there is, it’s a bit all over the place.”

Danielle said for their family, having a clear list of services available rather than having to actively seek them out would be a great help. “I think it’s hard to know what [support] you want, it’s probably easier to have a selection and go this is what would benefit,” she said.  She said support with social skill development earlier in Cameron’s life would have been very beneficial.

The Select Committee on Autism is due to present its final report to Parliament on the last sitting day of March 2022.