Improving the lives of people with autism

"Although our understanding of autism has progressed over the past few decades, there are many questions to be answered before we can say we fully understand the complexity of this condition. There has been much discussion about the concept of a ‘meaningful life’: what does that look like for autistic people? Can early diagnosis lead to better outcomes?" - Cheryl Dissanayake

At La Trobe’s Olga Tennison Autism Research Centre (OTARC), researchers enhance the lives of people with autism, and OTARC’s ASDetect app is a key part of that strategy. Powered by the ground-breaking research of La Trobe’s Dr Josephine Barbaro, the app helps parents and caregivers who suspect their child has autism by prompting them to answer questions about the child. The parent then compares their responses against narrated videos featuring behaviours of a typically developing child and a child on the autism spectrum.

Supporting the journey

OTARC’s research has found that children diagnosed by 24 months have much better cognitive outcomes by school age than children diagnosed between three and five years (the current mean age is 49 months). The Centre’s mission therefore is to promote the benefits of early diagnosis, with ASDetect at the frontline.

The app takes some of the uncertainty out of the process, informing about next steps after an assessment. After downloading the app and performing an assessment, the parent or caregiver is taken on what OTARC calls a support journey. Parents can undertake multiple assessments. They can do one at 12 months, 18 months and 24 months, and the videos are different for each. They’re contacted straight after the assessment and receive reminders if another assessment is due. They’re sent an assessment summary and notes that can be passed on to healthcare professionals so the family are taken seriously.

Children typically say single words from around 12 months and language development takes off around 18 months. However, as OTARC’s Director, Professor Cheryl Dissanayake, explains, ‘When a child isn’t speaking by that age, people might say, “Oh, he’s a boy” and think he’s just a bit slow with speech.’ By 24 months, if language hasn’t developed, children often enter the pathway to diagnosis, which can take up to a year. Children that develop language and who have autism are referred even later.

Social cues and clues

According to Professor Dissanayake, ‘We’re trying to diagnose before language is in place. Relying on language for referrals means it will be too late. We’re trying to work with pre-verbal communicative behaviours.’ When a child on the autistic spectrum is diagnosed early, they have a greater chance of catching up to typically developing children, who learn from other people and respond to social stimuli. ‘If a baby is born without that preference to respond to people, faces and voices,’ she says, ‘they’re behind the eight-ball. Typically developing children learn so fast because they’re all eyes. They look at all the social things happening in their world.’

She illustrates her point with an example. ‘Say you give a baby an object. Then you give them a second object, but you label this one. As early as 12 months, the baby will play more with the labelled object, because they already know it has more meaning by reading your intention. That’s how socially clued in they are.’

Engaging the child in early intensive behavioural intervention helps ‘make the social world relevant so that the child can begin to learn from other people. One of the earliest things we try to do is get them to respond to other people so they can learn from them. We want to bring them back into the social loop.’

The meaning of ‘meaning’

For Professor Dissanayake, communities need to question what a meaningful life looks like for people at either end of the spectrum. ‘For someone in a wheelchair, a ramp solves access problems,’ she says. ‘But what if someone’s disability is more hidden? If someone is non-verbal, it doesn’t mean they’re not intelligent. Some might have impaired cognition – there are many varied levels of ability across the autism spectrum.’ OTARC wants to create opportunities so that everyone can contribute as best they can. ‘With early diagnosis and early intervention, we’re just trying to increase that capacity to be able to participate more fully and to contribute, which has knock-on effects for well-being.’

‘You need meaning in your everyday life,’ Professor Dissanayake explains. ‘You can’t have well-being without feeling useful in some way. The inclusion of autistic people in mainstream settings is important.’ However, inclusion can have its downside and needs to be carefully implemented. ‘We’re talking about including people with autism in our schools and workplaces, but they can have a hard time there. Sometimes they can be bullied.’ That’s why timely intervention is crucial. It allows children to be integrated into inclusive settings as early as possible, and typically developing children to become more tolerant by learning about difference in others.

At the end of the day, OTARC’s research is all about better outcomes for people with autism and their families. For Professor Dissanayake, ‘the best reflection of a civilised society is how you treat your most vulnerable: your young, your disabled, your aged’.

Although there are no quick or easy answers, OTARC’s mission is clear: ‘We want our research to impact the quality of people’s lives.’

Professor Cheryl Dissanayake is the Founding Director of the Olga Tennison Autism Research Centre at La Trobe University.

See yourself working in psychology and public health.

Check out La Trobe’s courses