New research from WA gives non-verbal autistic people a voice in a bid to boost communication
For some people with autism, speech is no more detectable than background noise, such as the sound of a passing train.
- About half of Australians living with autism struggle to communicate
- They often use augmented and alternative communication devices
- Nw research aims to educate supporters on the use of the devices
Communicating with nonverbal or minimally verbal people can be very difficult, but new research from Murdoch University‘s Cognition in Autism Lab is reshaping the communication space.
Shu Yau is a developmental psychologist at Murdoch University who for 10 years has studied how nonverbal autistic people process sound and language compared to autistic people without language problems.
Dr. Yau said the way verbal people with and without autism process sounds is very different.
Autism is a developmental disorder that affects around 1 in 150 people in Australia and around half of them have trouble communicating.
“It’s usually for practical reasons, they’re usually excluded from research.
“It’s this misconception that they don’t understand what’s expected of them.”
Like other people with communication disorders, nonverbal autistic people often use augmented and alternative communication (AAC) devices like iPads to help them with their interactions.
This is the focus of Dr. Yau’s research, which aims to educate people who support AAC users in using the devices.
Not talking means nothing
Carolyn Italiano is a teacher and mother to James, 22, who has the dual diagnosis of cerebral palsy and autism and attends Dr Yau’s focus groups.
Ms. Italiano helps James communicate with a PODD (Pragmatic Organization Dynamic Display) book full of pictures and language options.
She said she hopes the research will shed light on some of the barriers faced by people with communication needs.
“I hope this sheds light on the barriers that people with complex communication needs face, because there are still a lot of barriers. And a lot of them are attitudes,” she said.
“People might look at James and say, ‘oh, he has nothing to say. He can’t communicate or he doesn’t want to have any friends, or he’ll never work’.
James is minimally verbal and was diagnosed with autism at the age of three when he suddenly stopped speaking.
Ms. Italiano remembered exactly when it happened.
“I remember it was his sister’s birthday on December 30 and he sang happy birthday to her, and March 30 when it was her birthday and he wasn’t talking,” she said.
James was initially diagnosed with cerebral palsy, but until then he was communicating normally.
He was taken in for evaluation and doctors diagnosed him with autism.
Communicating with James can be tricky, and Ms Italiano said no device worked perfectly for her needs, but the PODD book helped.
Dr. Yau is taking the results of his study to the real world by developing community discussions about technology, working with speech-language pathologists from disability service provider Rocky Bay, to raise awareness of communication issues and teach participants more ways to effective at interacting with non-verbal people.
“If you listen to their voices and consider what their parents say they need as well, it can happen,” she said.
It will open talks in early 2022.
Technology helps, but all parties need to be comfortable
With assistive technology, there is no right device, and low-tech and high-tech options support users on an individual basis.
Apps on iPad 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 a feeling.
The key point is that both the person and their communication partner are comfortable using it.
“Sometimes people think ‘oh, I know whatever the kid wants, or the person wants to say, I know them,'” said Rocky Bay speech pathologist Lisa Totten.
“But the thing is, if the person relies on informal means to communicate like yes and no, you might understand their basic needs, but you really don’t know what’s going through someone’s head without a robust communication system.
“So that’s what excites me about AAC because people might have that untapped potential.”
Generalized communication difficulties
Communication is a basic human right, but it’s something that thousands of Australians struggle with on a daily basis.
Communication disorders such as aphasia and problems understanding and expressing speech are unrelated to autism and can be triggered by strokes and acquired brain damage.
Associate Professor Deborah Hersh of Edith Cowan University is a speech-language pathologist who works with people with aphasia after brain injury or stroke.
Professor Hersh said that, like people with non-verbal autism, people with communication disorders often encounter barriers when interacting with the community.
“Things that might be common to all in terms of interaction, the biggest one is attitude,” Professor Hersh said.
“Sometimes people with aphasia say things like ‘the doctor is just talking over me, or they’re just talking to my family members.’
“Awareness is part of educating people, helping them understand what these machines are for.”
A limited understanding of the importance of AAC has caused hospital staff to remove and lock down a patient’s communication device because they believe it is protecting expensive technology.
“It’s a good example of the need to raise awareness of the importance of these devices,” Prof Hersh explained.
“Because people don’t understand that if they take that away from the person or lock them safely in a closet, it takes that person’s line of communication out.”
Ms. Italiano ran into a similar problem the first time James received her PODD book.
At first, James’ PODD book stayed in the bag
When they first received a PODD book, Ms Italiano said she didn’t know how to use it and it was left in her bag when he came home from school.
“I had no training in it,” she said.
“Just this huge heavy stuff that you had to turn pages to find the language, and 100% I admit I didn’t use it. He was coming and going from school every day, he was coming home to house in her bag every day, I didn’t open it.
“Then it came back to me when he was around 15, but this time it came with an amazing speech therapist who trained me, who trained the communication partner, and the difference was amazing.”
Having someone show her how the device worked has allowed Ms. Italiano to communicate better with her son, and it’s something she wants to see come out of Dr. Yau’s research.
Rocky Bay speech therapist Leah Cardwell hoped Dr. Yau’s research would address issues like this by highlighting the reasons for AAC dropout, where someone stopped using their device for communicate.
“One of the reasons people say it’s the way it looks, does it make my child feel like he has a disability, or does it make him feel uncomfortable , other kids in the schoolyard might not have things like that,” Ms Cardwell said. .