Social services minister Dan Tehan announced the establishment of the group just over a week ago, in the wake of growing concerns the NDIS was looking to change the requirements for autistic people to gain access to the scheme.

The advisory group will cover a number of areas, including best practice in diagnostic guidelines, the increasing prevalence of autism and the impact of functional assessments.

Back in May the government erroneously posted potential changes to the scheme, which would limit access to those with only the most severe cases of autism.

While this was quickly retracted and the government moved to reassure the community eligibility requirements would remain in place, Melanie Martinelli said the NDIS still didn't have the right approach when it comes to offering autistic people proper support.

Her experience in getting a plan for her teenage son has been a largely positive one, but she said more emphasis needed to be placed on a person's individual needs, rather than strict adherence to a medical assessment.

Also reassuring she said, was the high rate of autistic people on the boards of organisations working with the Autism Advisory Group.

“Nothing about us, without us, is something that should be taken on for any disability,” Mrs Martinelli said.

“How an NDIS plan impacts each person is a very individual thing – it's the same with autism.

“They'll be looking at it from a medical point of view, but you want to be looking at it from a lived experience point of view.”

Both Mrs Martinelli's son and daughter are autistic – her son was diagnosed with level two, her daughter level one.

Their needs however, do not always accurately reflect their categorisation, and it is this distinction that fuels her concern for the scheme's future.

“Being able to use the funding you receive the way you need to would be so useful, as would having functional assessments that better show where those needs are,” she said.

“Also not putting typical expectations on an autistic person.

“A lot of quality of life assessments look at social circles – I might only have one or two friends and I'm quite happy with that.

“A lot of people on the spectrum want to work, but we have 80 per cent unemployment.”

Twenty-nine percent of the 160,000 people on the NDIS are autistic, while estimates predicted it would be closer to 20 per cent.

Had Joel Wilson had his way, the National Disability Insurance Scheme would have had an autistic voice guiding it from the outset.

“They should have had it from the beginning,” he said of the recently announced Autism Advisory Group.

“They're making decisions about our futures, so we really should be included.”

One of the biggest problems with the NDIS approach to autism, which Mr Wilson was hopeful the AAG could address, was the current simplicity of an autism diagnosis.

“You get told you're level one or two or three, but in real life you can move between them,” he said.

“There are sometimes days where I stay in bed because I can't deal with things.

“When you go into a plan, the person you meet sees that you’re functioning well – that might not mean anything.

“The amount of planning and stress you put yourself through before you walk into that meeting, and then to be able to go out and function afterwards, is immense.”

Mr Wilson says functional assessments of what autistic people are capable of and what they struggle with will represent the best outcomes for all involved.

“Moving away from the 1-2-3 categories and more towards a list of everyday life things that an autistic person can identify where they struggle is going to be really helpful,” he said.

“That way you’re targeting where the money is going and you’re going to get better outcomes, rather than spending a lot with nothing to show for it.”