South Australian politician Emily Bourke didn’t realise she was taking on a world first when her government created an Office for Autism just over a year ago. But the more she talked to people and families around the state, the more she knew it was needed.

It started on the campaign trail in 2022. “We were holding lots of community forums, and it kept coming up naturally: my child can’t get through school; I’m an autistic adult and can’t get into the workplace,” she says. So she started holding specific autism forums; they kept getting booked out.

“That’s when we realised we needed someone solely focused on these autism policies. We didn’t realise no one had a position like this in the world.”

Bourke is now Australia’s first assistant minister for autism, but she probably won’t be the last. She’s tapped into something all policymakers in the country must grapple with: our improved awareness of autism and rising diagnosis rates mean our systems must change, from schools to workplaces.

All governments need to act. Federal Social Services Minister Amanda Rishworth will release the country’s first draft national autism strategy on Tuesday, promising to create a “whole-of-life plan for all autistic Australians” that spans reform to healthcare, education and employment.

The spiralling price tag of the NDIS, now one of the country’s fastest-growing budget pressures, only adds to the urgency. With more than a third of participants reporting autism as their primary disability, the condition has come under the national spotlight. What it has shown us is that people – especially children – are flocking to the scheme because there’s not enough support for them outside it.

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Bourke has done a lot of learning in the past year. “If you’re autistic, you’re half as likely to complete year 10. You’re three times more likely to be unemployed than someone else with another disability. And if you get to 50 years old, there is a higher suicide rate for the autistic community. That stems from all those other things: not getting through [school], not getting into employment and not having knowledge in the broader community about what it is to be autistic,” she says.

“The autistic community have done lots of research into this and found 84 per cent of people know the word autism, but only 29 per cent have knowledge of autism. These were concerning statistics to us.”

The federal government’s new autism strategy, which will be finalised with an action plan by the end of this year, takes all those statistics into account. Developed in consultation with autistic Australians, it vows to boost the understanding of autism among key professions and the wider community, to make education and employment more accessible, and to provide better support for families.

Under this vision for Australia, there would be more autistic faces in Australian sport and media, while public spaces and transport would cater to the sensory differences autistic people experience. Getting assessed for autism would be cheaper and easier, and there would be better access to health services through Medicare. Teachers would all undergo autism training, people in service roles would be upskilled, and workplace recruitment processes would be improved.

Clare Gibellini, an autistic advocate who helped oversee the strategy, says it is “hugely significant”. “This is the first step in a longer journey towards better lives for autistic people.”

The most pressing policy issue is what comes next with the NDIS.

About 35 per cent of participants in the $42 billion program, which has been growing at around 16 per cent a year, have autism as their primary diagnosis. That’s more than 215,000 people, a number which grew by 18 per cent last financial year, and 21 per cent the year before. Almost 80 per cent of autistic participants are 18 or younger.

The average annual payment to someone with autism was $33,800 in the 2022-23 financial year, up 7 per cent from the year before. Altogether, $6.73 billion in support was paid to autistic participants; a year-on-year increase of 28 per cent. Even the scheme’s architects say those rising costs are not sustainable for a social policy that needs public support to endure.

Almost everyone with an autism diagnosis who applies for the scheme is successful because people with a level two or three autism diagnosis are automatically eligible. Last year, 97 per cent of people with autism who applied for the NDIS were accepted, compared with 76 per cent of all applicants.

But that will change under a series of major changes that will remove the diagnosis list and refocus eligibility on people’s needs. Those changes, to be rolled out over the next five years, will reduce the number of children, in particular, who can access support packages with an autism diagnosis alone.

Most people have welcomed that move, which was recommended by a major review of the scheme. First, because looking at a person’s specific needs is more insightful than their diagnosis. And secondly, because the NDIS, which often funds siloed clinical services like speech pathology and occupational therapy, is probably not the best way to help children on their development journeys.

Professor Cheryl Dissanayake, the founding director of La Trobe University’s autism research centre, says the NDIS has fed an environment where “everyone’s in private practice and they’re charged top dollar”.

“I don’t think children should get one hour of therapy here and there. Parents can’t work, they’re constantly dropping their kids off,” she says. Principals are often asked to accommodate this, with kids leaving class to see their private therapist on school grounds in whatever space is available. This isn’t ideal for the child or the school. “Support should be provided where they are. Every school should have access to allied health so that kids get the support where they are.”

If families are going to stop using the NDIS to get support for their kids, they need other avenues. The classroom is the obvious place to start. But as Nicole Rogerson, the founder of parent advocacy group Autism Awareness Australia, has discovered, there is a long way to go.

A survey of parents published by her organisation on Tuesday shows 35 per cent of families of autistic children said they were discouraged or refused enrolment for their child at school, half of whom were in the public system.

Forty-five per cent said their schools were unwelcoming or reluctant to accommodate their kids. Half of parents have considered school alternatives, such as home-schooling or remote learning, because of those difficulties. Only 16 per cent were happy with how their schools managed funding to support their child.

“The federal government wants schools to step up and better support children with disabilities. We don’t disagree that this should be a goal,” Rogerson says.

“But this report illustrates the reality facing autistic children in schools today. It’s a call to action for enhanced teacher training, better communication and a commitment to inclusive education.”

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While some families gave examples of supportive teachers and positive adjustments in the classroom, “they are contrasted starkly against widespread reports of inadequate support, bullying, and systemic failures to understand and include autistic students effectively”, the report says.

Professor Andrew Whitehouse, head of the autism research team at Telethon Kids Institute, says Australia’s school systems have not evolved to support autistic children. “We need a better understanding of what true inclusion in the classroom looks like. We also need an understanding that we’re not teaching kids towards the average child: we need to teach kids around all the different methods of learning and different neuro-types that might be within that class. That’s what I see as the major evolution that needs to happen in every school in Australia over the next 20 years.”

It’s a daunting task for education ministers, whose systems are already stretched by workforce shortages. But in South Australia, Emily Bourke has had a few ideas, starting with getting an autism inclusion teacher into every public primary school.

“We have taken one teacher out of the classroom and are now training them in autism, inclusive studies, disability studies, so that they actually have that skill set and can share it with their peers and fellow teachers,” she says.

She also persuaded all four universities in South Australia to change their teaching degrees and introduce six new modules on autism, disability and inclusion, including practical training.

“[Before,] you might do one module on disability. That’s alarming because one in four kids that start school have a learning disability, which includes autism. So this is 1300 teachers that will graduate each year with new knowledge,” she says. A research team will follow that project starting this year, to ensure it’s making a difference.

Employment is the other big-ticket item. “Because if we can get people working, a job is more than just a pay packet,” Bourke says.

Her Office for Autism has launched an “Autism Works” campaign to guide employers on best practice. It’s being pushed on tram wraps, at Adelaide Oval, in newspapers. A workplace audit, available online, is where they can start.

Companies are encouraged to build their knowledge. They should consider their physical environments, and whether they are prone to causing sensory overload that autistic people might struggle with: think bright lights, loud noises, kitchen smells. It’s important to use clear, plain English, and accept that autistic people might not want to make direct eye contact, or prefer written communication to one-on-ones.

This extends to hiring processes. “We know the biggest barrier for the autistic community in employment is often [getting] the job itself, because it’s written in a way that seems black and white to someone who is autistic,” Bourke says. One-on-one interviews with surprise questions are often not the best format. One of Bourke’s government departments now provides questions in advance, “because we want to employ people with the skill set, not just someone who can answer a question on the spot.”

Whitehouse says employers need to understand “the enormous strength” autistic people can bring to the workplace. “Not just in the context of diversity, but also in terms of simple value add,” he says.

‘[Autistic people can] lose their jobs, not because of a lack of technical abilities, but social skills.’

Bodo Mann from information technology firm auticon

“We haven’t got workplaces that are set up to support that. So if we can find work systems that not just accommodate, but embrace, the employment of autistic adults, the business will not just benefit in terms of work culture, but almost without doubt, productivity as well.”

Information technology firm auticon is doing that work. It pairs autistic employees with client companies and helps everyone work together. Bodo Mann, the Australia and New Zealand chief executive, says awareness is the starting point.

“A lot of emphasis is on the strength autistic people bring: the ability to concentrate for long periods of time, detect errors, pattern recognition. There’s a brutal honesty that often comes with autism. If you don’t know that, it can be very confronting,” he says.

“One of the challenges our autistic consultants have – many were unemployed before – is they’re uncomfortable with social cues and there’s a fair bit of anxiety that comes from that. In a workplace where there’s corporate politics, if you don’t know how to play that game, they get sidelined or in worst case they get bullied. They lose their jobs, not because of a lack of technical abilities, but social skills.”

For employers, it’s not just about turning the lights down or giving someone a corner desk away from the noise. “What I would like from corporate Australia is a little more courage,” Mann says. “Innovation comes from creating a diverse team, so you look at things from different angles. By definition, autistic people think differently.”

For James Van Dyke, who was diagnosed with autism at four years old, workplace awareness has made a massive difference. He never struggled too much with school, but finding work took more than a year. “After graduating, I applied to a whole bunch of different companies. I didn’t really hear back from many of them and for others, I didn’t get far through the whole interview process.”

He didn’t feel comfortable telling the companies he was autistic, lest they assumed it would render him unable to work. It made job interviews especially challenging. “I’m a person that enjoys putting stuff in writing more than speaking one-on-one, just because I struggle with social cues. And so I think that factored into those companies’ decisions to not hire me,” he says.

What worked for him, in the end, was shorter video interviews and technical challenges that allowed him to demonstrate his abilities.

“I would like to live in a world in the future where it is possible to disclose your diagnosis and have companies be OK with that,” he says. Van Dyke is now working on automation and coding for ASX companies in cybersecurity. “If there’s something I really enjoy, they’ll let me just work on that, which is helpful because I’m good at really focusing and deep diving on particular topics that I enjoy for long periods.”

Bourke says her mission is to build that kind of knowledge across all government departments, from the justice system to public infrastructure and major events.

She’s partnered with the Australian Hotels Association to get someone training up pubs and clubs in making their environments more accommodating. “The autistic community want to be able to go out and enjoy their 21st bubbles in a pub, and they can’t do it at the moment because it’s too overwhelming,” she says. The local supermarket chain Drakes now does quiet shopping hours, has changed its lights so they dim, and has reduced sound on its cash registers. But Bourke says the most important thing it did was train its staff. “Most of them are at school, and are going to go on to the next workplace or networks with that new knowledge.”

Sharon Fraser, chief executive of autistic-led organisation Reframing Autism, says society must change how it interacts with autistic people. “Because what is so frustrating is that a lot of the challenges that autistic people face are not because of their inherent being,” she says.

“You can’t change my sensory profile, right? But you can support or accommodate me to be in a space with you.”

There’s a lot of catching up to do. For Tim Chan, who lost his speech at 14 months, early childhood was “one big jumbo of confusion”.

“I didn’t understand that the sounds people made stood for language until around age five,” he says, by typing on a speech-generating device. Sensory and movement issues mean he has limited control over his body, which affects his ability to engage comfortably with the world around him.

With support and years of effort at finding ways to communicate, mainly through typing, he’s graduated with an honours degree and is now doing a PhD on how neurodiversity applies to people with complex communication needs.

“Living with non-speaking autism is not easy,” he says. “I would like to see augmentative and alternative communication – [when a person uses something other than speech to communicate] – become accepted and embraced by society. That way, non-speakers can participate in the community more equitably.”

Professor Cheryl Dissanayake says a lot of disability in autism comes from societal barriers. “We’re learning more about how to change the way society operates. We need to listen to autistic people and their families,” she says.

“We can alter the ways in which we teach, employ and work, to make sure they thrive. I do think we need to talk more about all of this, because it’s not just about awareness, it’s about acceptance and then making the adjustments.”

This is the final part of a series about how our understanding of autism has changed and what it means for Australia. Read part one and part two.