New tools for early autism detection

Australia has produced a world leading program in the early identification of autism from infancy to preschool in the shape of the Social Attention Communication Surveillance-Revised (SACS-R) and SACS-Preschool (SACS-PR) tools

The Social Attention Communication Surveillance-Revised (SACS-R) and SACS-Preschool tools were tested in a longitudinal study conducted by the Olga Tennison Autism Research Centre (OTARC), La Trobe University, recently published in JAMA Network Open.

The study provides evidence that 83% of children identified at “high likelihood” for autism using SACS-R between 12- to 24-months of age received an autism diagnosis. Furthermore, the SACS developmental surveillance program identified most children on the autism spectrum by preschool age (96%).

What is the significance of this study?

Early identification of autism leads to earlier access to supports, services, and therapies, which can improve developmental outcomes and increase participation in schooling. It reduces stress on families by avoiding the “wait and see” approach and helps them understand the ways their child communicates with them.

Compared to other commonly used early autism identification tools, such as the M-CHAT (with an accuracy of 6% across 13 studies when used with community-based samples), the SACS program is the world’s most effective.

This is notable, given that most other tools are not tested in community-based settings, with these tools often used on children with known concerns or who have a sibling on the autism spectrum.

Are these tools new?

The original SACS tool was developed by Associate Professor Josephine Barbaro at OTARC in 2006, during her PhD research with supervisor Professor Cheryl Dissanayake. It used a developmental surveillance approach in a large community-based setting, working within the Victorian Maternal and Child Health (MCH) service in 17 local government areas (LGAs).

MCH nurses were trained by the SACS team to monitor the early signs of autism in infants and toddlers at their routine 12-, 18-, and 24-month health checks. Results of that study indicated that 81% of children detected by the SACS tool as having a “high likelihood” for autism received a diagnosis of autism. A/Prof Barbaro then refined the tool and identified the key markers of autism in infants and toddlers, creating the SACS-R.

How does current research differ from the original study?

While the first SACS study established the feasibility of early autism surveillance in a community setting, it was unable to follow-up the children to determine how many children on the spectrum the SACS missed. In 2013, the SACS-R study commenced in eight Victorian LGAs with 126 MCH nurses recruiting 13,511 children aged 11-30 months and monitoring them with the SACS-R tool at their routine 12-, 18-, and 24-month health checks.

Nurses monitored the children at their 42-month health check using the SACS-PR tool, developed by A/Prof Barbaro and her honours student, Evrim Babacan (née Ulusoy). Children detected by the SACS-R or SACS-PR as having a “high likelihood” of autism were referred to OTARC for free developmental assessments at 6-monthly intervals using “gold standard” autism diagnostic tools.

What are the results of the study?

MCH nurses used the SACS-R and SACS-PR tools >31,500 times over 5 years and a team of 14 trained allied and medical health and clinicians completed >560 developmental assessments.

Results revealed that 83% of children identified at “high likelihood” for an autism diagnosis by the SACS-R between 11 and 30 months of age received a diagnosis of autism, indicating very high accuracy (positive predictive value).

When combining the SACS-R and SACS-PR tools within a developmental surveillance program, most children on the autism spectrum were identified by preschool age (96% sensitivity).

Where to from here?

The SACS-R tool is already used in Australia, with state-wide training conducted in Victoria and Tasmania, and in 11 other countries, including Japan, China, and New Zealand, and lower-middle income countries like Nepal and Bangladesh.

Our research shows the tool is practical for use in communities world-wide by primary health (e.g., general practitioners, child health or practice nurses), allied health, and early childhood education professionals. The SACS-R tool also underpinned the development of ASDetect for parents, a free award-winning mobile application for the early identification of autism in 11- to 30-month-olds; it is available in English, Spanish, and Mandarin.

Parents around the globe therefore have access to an accurate and easy-to-use early detection tool for autism. What we need now is for the global community of health professionals to undertake training in the early signs of autism using SACS, and work collaboratively with parents to validate their concerns and help reduce the age of diagnosis for children on the spectrum, which in turn will lead to better outcomes and acceptance for the autistic and autism communities.

This article was written by Dr Nancy Sadka, a Research Fellow at the Olga Tennison Autism Research Centre (OTARC) at La Trobe University in the early identification and diagnosis of autism[ Associate Professor Josephine Barbaro, a Principal Research Fellow and Psychologist at the Olga Tennison Autism Research Centre (OTARC) at La Trobe University in the early identification and diagnosis of autism; and Dr Melissa Gilbert, a Postdoctoral Researcher at the Olga Tennison Autism Research Centre (OTARC) at La Trobe University in the early identification and diagnosis of autism.