Olga Tennison Autism Research Centre (OTARC)

The Olga Tennison Autism Research Centre (OTARC) at La Trobe University outside Melbourne estimates 1 in 119 Australian children have autism. Early diagnosis and interventions have significant benefits, yet it’s estimated that less than 3% of children with autism are diagnosed before the age of two. OTARC created an assessment tool called the SACS-R that identifies infants and toddlers age 12–24 months at “high likelihood” for an autism diagnosis; at 83% accuracy, it’s the most effective screening tool in the world.

OTARC developed a SACS-R application for nurses, built on the Salesforce Platform. The reseach centre implemented tools from Sales Cloud and Marketing Cloud to collect and analyze data, and to manage communications with nurses and at-risk families. The success of that application inspired OTARC to partner with Salesforce on a mobile app, built on Heruku, free for use by parents globally. ASDetect, which guides parents through the assessment, has been downloaded more than 65,000 times and is available in three languages.

For more than a decade, Associate Professor Josephine Barbaro at the Olga Tennison Autism Research Centre (OTARC) at La Trobe University has researched behavioural signs of autism that can be observed at a young age, such as inconsistent or infrequent eye contact. Through a large-scale study involving more than 20,000 children, OTARC developed the Social Attention and Communication Surveillance-Revised (SACS-R) tool.

A five-year study published in JAMA Open in March 2022 found that the SACS-R is extremely accurate in identifying very young children on the autism spectrum. Of the infants and toddlers that nurses using the tool identified as having high likelihood of an autism diagnosis, 83% were later diagnosed with autism.

“Parents are often told to ‘wait and see’ when raising queries about their child’s development. This means the average age of diagnosis is around four to five, and opportunities for early supports have been missed,” Barbaro said. “Putting this extremely effective tool in the hands of a trained primary health professional, so that during their routine health checks they are also monitoring for autism, makes a huge difference to early diagnosis.”

Initially, nurses used pencils and paper to record their observations. Ultimately they decided whether a child was showing any signs and should be given a formal developmental assessment. To make it easier for nurses to use the SACS-R assessment and for OTARC to collect the resulting data, the research centre implemented Salesforce.

On the Salesforce Platform OTARC built a SAC-R application for nurses to use when performing routine health checks on young children.

The application started out very simple — basically just a series of questions — but its ability to collect data and generate records proved extremely useful. Adding tools from Sales Cloud and Marketing Cloud enabled the research team to maintain ongoing communications with the families of hundreds of children with a high likelihood of autism. The application for nurses was so successful that OTARC researchers began wondering how they could make the early detection program available to parents around the world. They envisioned a mobile app that would gather input from parents and sync with OTARC’s research engine on Salesforce. Any parent could use the ASDetect app to track observations of their child starting at the age of 11 months, and the app would provide appropriate feedback and guidance.

When OTARC requested pro bono help from Salesforce, a flood of developers applied to work on the app project, and the resulting core team spanned three continents. Using an agile development process and collaborating via Chatter, the team built ASDetect in only 8 weeks.

The team chose the Heroku platform for its scalability, so the app could be distributed globally. They built native mobile apps running on iOS and Android, with video assets hosted in the cloud. Heroku Connect funnels data into OTARC’s Salesforce backend to manage family data and communications.

Parents or family members using ASDetect complete one of three age-appropriate assessments for children at age 12, 18, and 24 months. Video footage from clinical assessments demonstrates the behavior of children in a normal development range compared to those who fall on the autism spectrum.

Following the self-assessment, the family receives an on-screen result of either low or high likelihood of autism, and a comprehensive formal assessment results email, which they can take to their family doctor. Through the app, at-risk families receive ongoing communications about next steps, resources, and critical support services that will help them navigate the journey ahead.

ASDetect has been downloaded for free more than 65,000 times since its launch in February 2016. Thanks to funds from the 2016 Google Impact Challenge, the app has been translated into Spanish and Mandarin to reach even broader audiences.

The Australian Information Industry Association selected ASDetect as the Research and Development Project of the Year 2016 for Victoria and nationally. For their work on the ASDetect app, OTARC received the BHERT Award for Outstanding Collaboration for National Benefit in Public Health for 2019.

“With Heroku and Salesforce, we have laid down a very sophisticated architecture,” said Professor Cheryl Dissanayake, Director of OTARC. “It will enable us to do so much more into the future — I can already visualise more apps that we can lay on top of what we’ve already done. I wouldn’t be surprised if other research departments look to follow in our footsteps.”

OTARC was established at La Trobe University in 2008 as the first centre dedicated to autism research in Australia. Its mission is to expand knowledge to enrich the lives of autistic people and their families through high-quality scientific research, innovation, and translation.