For some people with autism, speech is no more detectible than background noise, like the sound of a passing train.
Communicating with people who are non-verbal or minimally verbal can be very difficult, but new research being conducted at Murdoch University's Cognition in Autism lab is reshaping the communications space.
Shu Yau is a developmental psychologist at Murdoch University who, for 10 years, has been researching the way non-verbal people with autism process sound and language compared to autistic people without language issues.
Dr Yau said the way verbal people both with and without autism processed sounds was very different.
Autism is a developmental disorder that affects around 1 in 150 people in Australia and around half of them have trouble communicating.
"This is usually for practical reasons, they're usually excluded from research.
"It's that misconception that they don't understand what's required of them."
Like other people with communication disorders, non-verbal people with autism often use augmented and alternative communication devices (AACs) like iPads to assist them in interactions.
This is the focus of Dr Yau's research, which is aimed at educating people who support AAC users in the use of the devices.
Not speaking doesn't mean nothing to say
Carolyn Italiano is a teacher and parent of 22-year-old James, who has the double diagnosis of cerebral palsy and autism and is a participant in Dr Yau's focus groups.
Ms Italiano helps James communicate with a Pragmatic Organisation Dynamic Display (PODD) book full of images and language options.
She said she hoped the research would highlight some of the barriers faced by people with communications needs.
"I hope it brings to light the barriers that people with communication complex needs have, because there are still a lot of barriers. And a lot of them are attitudes," she said.
"People might look at James and go, 'oh, he's got nothing to say. He's not capable of communication or he doesn't want to have friends, or he will never work'.
James is minimally verbal and was diagnosed with autism at the age of three, when he suddenly stopped talking.
Ms Italiano remembered exactly when it happened.
"I remember it was his sister's birthday on the 30th of December and he sang happy birthday to her, and on the 30th of March when it was his birthday and he wasn't speaking," she said.
James was diagnosed with cerebral palsy first, but until then he was communicating normally.
He was taken to be assessed and the doctors diagnosed autism.
Communicating with James can be challenging, and Ms Italiano said there was no device that worked perfectly for his needs, but the PODD book had helped.
Dr Yau is taking the results of her study into the real world by developing community tech talks, together with speech pathologists from disabilities provider Rocky Bay, to raise awareness about communication issues and teach participants more effective ways of interacting with non-verbal people.
"If you listen to their voices and take into account what their parents say they need as well, it can happen," she said.
She will open the talks in early 2022.
Tech helps, but all parties need to be comfortable
With assistive technology, there is no right device, and low and high-tech options support users on an individual basis.
Apps on iPads can allow a person to speak using the device and a PODD book with a range of images can be used to convey a choice or feeling.
The key point is that the person and their communication partner are both comfortable using it.
"Sometimes people will think that 'oh, I know everything the child wants, or the person wants to say, I know them'," Rocky Bay speech pathologist Lisa Totten said.
"But the thing is if the person's relying on informal ways to communicate like yes and no, you might be understanding their basic needs, but you really don't know what's going on inside someone's head without a robust communication system.
"So that's what gets me excited about AAC because people might have this untapped potential."
Communication difficulties widespread
Communication is a basic human right but it is something thousands of Australians struggle with daily.
Communication disorders such as aphasia and problems understanding and expressing speech are not related to autism and can be triggered by strokes and acquired brain injuries.
Associate Professor Deborah Hersh from Edith Cowan University is a speech pathologist who works with people who have acquired aphasia after a brain injury or stroke.
Professor Hersh said just like non-verbal people with autism, people with communication disorders often encountered barriers when interacting with the community.
"The things that might be common for all of them in terms of the interaction, a big one is attitude," Professor Hersh said.
"Sometimes people with aphasia say things like 'the doctor just talks over the top of me, or they just talk to my family members'. That's a barrier.
"Awareness raising is part of educating people, helping them to understand what the point is of these machines."
Limited understanding of the importance of AAC has caused hospital staff to remove and lock away a patient's communication device because they think they are protecting expensive technology.
"That's a good example of how awareness-raising of the importance of those devices needs building up," Professor Hersh explained.
"Because people don't understand that if they move that away from the person or lock it away safely in a cupboard, that's taking that person's line of communication away."
Ms Italiano experienced a similar issue the first time James received his PODD book.
At first, James's PODD book stayed in the bag
When they first got a PODD book, Ms Italiano said she did not know how to use it, and it stayed in his bag when he came home from school.
"I had no training in that," she said.
"Just this massive heavy thing that you had to turn pages to find language, and 100 per cent I admit I didn't use it. It went to and from school every day it came home in his bag every day, I didn't open it.
"Then it came to me again when he was about 15, but this time it came with an amazing speech pathologist who gave me training, who trained the communication partner, and the difference was amazing."
Having someone show her how the device worked made it possible for Ms Italiano to communicate better with her son, and that is something she wants to see come out of Dr Yau's research.
Rocky Bay speech pathologist Leah Cardwell hoped Dr Yau's research would address issues like this by highlighting the reasons for AAC abandonment, where someone stopped using their device to communicate.
"One reason that people do say is it's the look of it, is it making my child look more like they have a disability, or does it make them uncomfortable, other children in the schoolyard might not have things like this," Ms Cardwell said.
"When in reality it adds to a person's abilities and it is no longer unusual to see anyone having a tablet or device with them.
"People may have concerns that other children from school may think of a child as being different for having a communication device. In my practice, I have only had children’s peers think that a device is really interesting and see it as a doorway to genuine, meaningful communication”.
