A national study has detailed the experience of autistic Australians in accessing services in areas like healthcare, public transport, retail, education, employment and recreation. The research found barriers were encountered frequently and across a number of everyday services in different sectors, contributing to a cumulative toll of negative experiences. Advocates say the solutions exist, but improved awareness and support is needed to implement changes that put the lived experience of autistic Australians at the centre.
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TRANSCRIPT
Going to the cinema is an experience that many Australians enjoy - but it is not so readily accessible for some, including Freddie, an autistic six-year-old.
Parents Beth and Michael Cooper say what was supposed to be a memorable and positive first experience - ended up being anything but.
Beth Cooper: "The local cinema have one session a month, which they say is autism friendly. And the first time we went, they said: the lights are going to be dimmed (but) not completely off. The sound is going to be turned down. So we went to this one. And the lights - it went pitch black. The sound came on - my son grabbed his ears and went screaming from the cinema because they just forgot to put the right settings on.
Michael Cooper: "We weren't the only ones there. He certainly wasn't the only one that was distressed. And when it came on, I think if anything they turned it up. It was so loud, it was deafening. And when they eventually, they sorted it out - I think about an hour into it, he was pretty uneasy about the whole thing."
The experience made them reluctant to try again.
Beth Cooper: "We didn't want to take him again - in case this happened, again. Sorry, I am getting a bit sad thinking about it.
Michael Cooper: "Yes, and that is true. It knocked his confidence as well. It was a while before we could take him again. And I think even when we went back the next time, they started it off at full volume again. I had to run out and they turned it down. My confidence in these people is rock bottom."
Mr Cooper says the way the business dealt with customer feedback added to the negativity of the experience.
"But it's even the ability to speak to people. Because I remember when I went to try and pick it up with them. The manager said you'll have to email head office and there is a generic email. There was no phone number. So you email them and then somebody gets back in three months time with a sort of a PR-approved response, here's a free ticket."
It is something that Dr Chris Edwards says is reflected in his research, mapping the extent and frequency of barriers experienced by autistic Australians across everyday environments like public transport, healthcare and community activities.
He has authored a national report, commissioned by autism-specific service provider Aspect, which surveys 246 Australians, including autistic adults and the parents or caregivers of autistic people.
"From the autistic adults that we had between 64 and 82 per cent (of respondents report barriers). They had difficulty accessing every one of the domains that we asked about. Things like healthcare, employment, transport, shopping and then parents as well. Still up to a half and up to 77 per cent - they had accessibility difficulties with their child in accessing every one of these contexts that we looked at."
Dr Edwards says that it can be challenging for those without the lived experience to understand the perspective of autistic individuals - because they may not show outward physical signs of their challenges.
Yet their sensory experience interacting with environments and people can result in a large energy output that significantly impacts their daily lives.
"I think that that common misconception that access is about getting someone in the door. You get them in the door and everything's all good. But I guess accessibility is much more than getting someone through the door. It is about the whole - how the service is structured. Whether people can participate your shop or your healthcare setting without major costs to their energy, to their health, to their wellbeing."
Sensory environment, unpredictable processes, and interactions with staff were listed as the top barriers.
That could be a lack of easy-to-access written information on how to navigate services - or what to expect at a venue.
"Going to the doctor is quite a good one where you know, you have a set appointment time. You go, you check in. And then you're just kind of left there waiting. You don't know if I'm going to be seen in one minute - or am going to be waiting here 30 minutes or an hour? That unpredictability creates anxiety, which I guess an easy option is to communicate clearly on what that wait time would be."
The frequency of the barriers encountered was something also documented in the research.
"They told it was happening often, very often. So it was almost every time they were going to the doctor, or trying to get on public transport, these accessibility difficulties were there. And they weren't just inconvenient. They were having quite a substantial impact on both the autistic adults and the family's wellbeing."
Dr Edwards says those experiences have an accumulated toll that could result in hours or even days of recovery after seeking a service - meaning reduced workforce participation and community engagement.
"In the stories that we heard there was this I guess idea that came out about access burden because of how hard things are to access and use - if at all. There was all this hidden work that people were going into to prepare to find something that was accessible. And even the time spent afterwards recovering - for hours or days after the event. Or simply because it was too hard, they had given up and withdrawn from a lot of activities."
Dr Edwards says there are a range of solutions - some that cost money and others that don't.
But the common factor is seeking input early on, from people with lived experience on the challenges they encounter navigating the space.
"Individual settings can be quite different. You really need to hear from your customers, or your participants who have that lived experience because they're the ones who can tell you where things are difficult and how things can be made better. One of the other comments - it costs people nothing, is to actually listen. To show compassion. To show understand. Because so many barriers come from that people factor. That little bit of compassion and understanding can really make a difference whether something is accessible or distressing."
A senior consultant in Aspect's autism-friendly team, Emma Beardsley [[Beards-lee]], says a big part of her job is speaking to businesses and service providers about how to improve the user experience for autistic individuals.
"A big part of my role at Aspect is going into these kinds of places to try and make them a little bit more autism friendly. So we get a lot of this feedback from customers, from clients saying we're not getting autistic people in. Or they're struggling to come in to do these exercises everday tasks. And for me personally, it is all of those barriers resonate with me as well. I end up having to do a lot of my shopping online because I find the sensory environments in retail centres and shops very, very difficult to navigate. I can manage with a support person coming along with me. Sensory tools like noise-cancelling headphones and sunglasses. But it takes so much out of me that I then have to spend the rest of the day not doing anything else - just to get a load of groceries."
Ms Beardsley says the work she did with the organisers of this year's Sydney Mardi Gras to set up three quiet - or low-stimulus - tents, meant she attended the event for the first time.
"No, I had never been to the Mardi Gras before because I was terrified of it. It was crowded, there were people drinking. It is a sensory overwhelming place. But when we started to run the quiet tents, I got to know the event really well through working with the organisers. And it gave me the confidence, one, to attend. And two, run a quiet tent for other people. So our quiet tents are quite often staffed by autistic people themselves to support other autistic people and people with disability. And up to 70 per cent of the autistic population identifies as sexuality or gender diverse. So that is a large proportion of the autistic community that have that second intersection with another piece of diversity. And it is allowing them access to that event and connecting them to community as well."
She says solving the accessibility challenges faced by autistic people helps other groups in the community too.
"The things that we recommend for making environments better for autistic people actually works for a much broader proportion of the population. It works well for people who have English as a second language. It works well for older people who find environments hard to navigate. It works well for people with other disabilities, and other cultural expectations. They're not big autism-specific changes. Quite often they're just small process changes or small environment changes that benefit a lot of people."
Ms Beardsley says legislative tools - and funding support through government or local council grants - would help accelerate the pace of change.
"I find through my work a lot of the challenge is budget. There isn't particularly much budget because there are no standards and regulations for autism-friendly environments for people to make these changes in terms of government grants - or funding from other sources. So it is down to businesses committing to us their own incomes and profits to do this. I would love to see government funding for increased accessibility for neurodivergent people where businesses can rely on some of that funding to help make some of these bigger changes that would make such a big impact."
Michael Cooper says parents and caregivers also experience frustration over the repeated barriers encountered - and when initiatives are done well, it helps the autistic individual and their families to feel embraced by the community.
He and his wife, Beth, have found an inclusive football [[soccer]] club 30-minutes away that has allowed Freddie to engage in a way that has made him feel comfortable to express himself.
"So they actually manage to cater for different types of personalities along the spectrum, if that the still the right word to use. And I think that has been what has made it really enjoyable. It means that he is able to have a bit of quiet time kicking a ball by himself or practice kicking it into the goal. Celebrating with his shirt over his head, which is what he likes to do. And then when he feels up to it, he can go into an informal game. And kind of enjoy that. And it is that kind of flexibility and understanding that is really important. It gives you a sense of belonging. It is feeling part of the community - and making us feel and making him feel like he can still be involved in things. And he can still learn and grow from those experiences outside of school.
Mr Cooper says he hopes to see this approach more commonly used in the community - and the starting point is the human factor of how people connect to each other.
"I think whether you're neurotypical or neurodivergent, you benefit more from different experiences in life - and different environments. And the kinds of environments you can experience are limited, unless they are made accessible. We did things when we were younger that had a material effect and impact on us growing up. And I think what parents of autistic children want is to just let their children have the same or similar experiences to those who are neurotypical."
