COMMUNITY awareness of autism has broadened in recent years, in particular the identification of children on the autism spectrum at younger ages. As the main primary health providers for most families, GPs are key partners in the identification, diagnosis, and support of children on the spectrum and their families.
How does autism present in very young children?
Behaviours common in children on the autism spectrum can be observed in the first year of life and reliably assessed by the second year. As with older autistic children and adults, the presentation of behavioural differences in very young children on the spectrum can vary. For example, while some parents/carers report their child is difficult to settle, others report their child being an “easy” baby who rarely cries. However, there are “core” behaviours that present in most children across the autism spectrum, which fall in the areas of “social communication” and “reciprocal interaction”.
Although restrictive, repetitive and sensory behaviours are more pronounced in older children on the spectrum, these behaviours can be subtle or emerging in infants and toddlers, making it harder to use these behaviours as predictors of an autism diagnosis in these age groups.
What should parents/carers and GPs be looking out for?
Differences in social communication between infants and toddlers on the autism spectrum and typically developing children can include:
- joint attention, such as pointing to share interest with others, showing things of interest, and checking back and forth to people’s faces;
- use of eye contact;
- imitating others’ behaviour;
- using gestures, such as waving bye-bye;
- responding to their name;
- pretend play, such as feeding a teddy.
These behaviours are different due to being absent, used infrequently, or not used in combination with other behaviours. The presentation of these behaviours change as children grow and for some children, differences in these behaviours may not be immediately apparent.
It is vital that parents/carers, GPs, and other trained professionals monitor infants’ and toddlers’ social attention and communication behaviours over time (ie, using a developmental surveillance approach) and not just at a single point in time.
It is important to note that not all children on the spectrum will exhibit all the common behavioural differences. It is equally important for parents/carers and GPs to be reassured that there is no single behaviour that “rules out” autism – for example, we are often told by parents/carers that their child was considered “not on the autism spectrum” because they made eye contact. It is the pattern or combination of behaviours that a child displays that determines if they will meet the criteria for an autism diagnosis, which our early identification tools can help ascertain. Furthermore, we know that parental/carer concerns are strong predictors of a child presenting with a developmental condition, so it’s important to refer to a specialist in autism diagnosis for investigation.
The SACS-R+PR model – is it up-scalable?
Our team, led by Associate Professor Josephine Barbaro, has developed and tested evidence-based tools for professionals. The Social Attention and Communication Surveillance-Revised (SACS-R) and SACS-Preschool (SACS-PR) tools, used within a developmental surveillance framework, can help track children’s development and identify infants, toddlers, and preschoolers who are likely on the autism spectrum. Both the SACS-R (for 11- to 30-month-olds) and the SACS-PR (for 31- to 60-month-olds) are observation-based tools used by trained professionals to monitor these age groups for the early signs of autism. Each assessment is designed to be administered as part of a routine consultation (eg, responding to a name call, monitoring the child’s use of eye contact during the consultation), so it doesn’t require much or any additional time to administer.
The SACS tools have many strengths, including the ability to monitor children’s social communication development from infancy to preschool using four developmentally appropriate checklists. While both tools have items on social communication behaviours, the SACS-PR also includes items on repetitive, stereotyped and sensory behaviours as they become more apparent in this age range. Children are identified as having a “high likelihood” for autism if they have “atypical” behaviour for three of the five SACS-R key items or three of the eight SACS-PR key items.
Our study, recently published in the journal JAMA Network Open, found that the SACS-R and SACS-PR are the world’s most accurate autism screening tools for infants, toddlers and preschoolers. The SACS-R has very high accuracy (positive predictive value), with 83% of the children aged 11–30 months at “high likelihood” for autism receiving a diagnosis. When the SACS-R and SACS-PR tools are used together, 96% of children on the autism spectrum were identified by preschool age (sensitivity).
Training is required to use the SACS-R and SACS-PR tools, which can be delivered in person or virtually, with a self-paced online option available for the SACS-R, giving professionals the flexibility to access the training at a time that suits them. The training shows professionals how to use the SACS tools with videos demonstrating the differences in social communication. It also provides knowledge on other relevant areas, such as how to discuss the SACS assessment and results with parents/carers and how to make referrals for further assessment.
Hundreds of thousands of children worldwide have been monitored using the SACS tools. In Australia, SACS-R has been rolled out statewide in the Victorian and Tasmanian maternal and child health systems. It is also used in 11 other countries, including New Zealand, China and Japan, and in lower middle income countries such as Nepal and Bangladesh. A variety of professionals use the SACS tools, including GPs and practice nurses, maternal and child health nurses, allied health professionals, and early childhood educators. The implementation of the SACS tools in a wide range of settings shows the versatility of these tools and ease of scalability.
To further increase accessibility, we have developed a free parent/carer-led mobile app, ASDetect, which uses videos to demonstrate the behaviours being monitored and reminds parents/carers to continue monitoring their children’s development. ASDetect is available worldwide on both mobile app stores (Apple and Google), with English, Mandarin and Spanish versions available.
We are currently developing a professional version, ASDetectPRO, aimed to meet the needs of medical and primary health, allied health, and early childhood education professionals. Our preliminary research (to be published shortly) indicates key similarities and differences in the early autism knowledge and tool training needs for these professional groups. The most important training needs among these groups were information on the early signs of autism, how to use an early autism screening tool, and how to effectively communicate results with parents/carers.
When and who to refer on to?
All children identified as having a “high likelihood” for autism using SACS or ASDetect should be referred for further assessment. Australian and international research has shown that autism diagnoses in toddlers are stable; therefore, waiting until a child starts preschool or primary school before initiating diagnostic assessment is not advantageous. Earlier autism diagnosis can contribute to better outcomes for children on the spectrum, such as greater participation in mainstream schooling, less need for ongoing supports across time, and increased cognitive abilities.
It is also unnecessary to wait for a formal diagnosis before referring a child with a “high likelihood” for autism for supports and services, given the known benefits of early therapy and access to specialised playgroups, childcare or preschool, as well as early access to supports for parents/carers. Children under 7 years can access funding for such services through the National Disability Insurance Scheme (NDIS) early childhood early intervention (ECEI) approach without a diagnosis. Thus, children identified with a “high likelihood” for autism on SACS or ASDetect should be referred for ECEI access while awaiting formal diagnosis.
However, receiving a formal diagnosis is still important. It helps children to access ongoing funding under the NDIS when they are older than 7 years. The diagnosis will also sustain the supports that are needed for children to thrive in their development. From listening to autistic adults, we also know that being aware of their autistic identity from an early age helps with understanding their identity and needs early on in life.
The national guideline for the assessment and diagnosis of autism recommends autism diagnostic assessments comprise of an initial “comprehensive needs assessment”, and if indicated, a “diagnostic evaluation”. These assessments can be completed by a single diagnostician (a child and adolescent psychiatrist, paediatrician, or psychologist) or a multidisciplinary team involving both medical and allied health professionals, through the public or private health systems. GPs may also contribute to this process by completing a medical evaluation.
GPs have a vital role in helping to facilitate positive outcomes for children on the autism spectrum and their families, providing screening, medical assessment, support, and referral to further services and diagnosticians. With access to highly accurate tools such as the SACS-R, SACS-PR and ASDetect, GPs can be fully involved in the developmental surveillance of autism for all children in their care.
Associate Professor Josephine Barbaro is a Principal Research Fellow and Psychologist at the Olga Tennison Autism Research Centre at La Trobe University, and co-founder of Australia’s first “Early Assessment Clinic” for autism.
Dr Melissa Gilbert is a post-doctoral researcher at the Olga Tennison Autism Research Centre at La Trobe University. Her research interests include autism, disability, women’s health and wellbeing, and the intersectionality of these.
Dr Nancy Sadka is Research Fellow at the Olga Tennison Autism Research Centre at La Trobe University in the early identification and diagnosis of autism spectrum disorder.
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The statements or opinions expressed in this article reflect the views of the authors and do not represent the official policy of the AMA, the MJA or InSight+ unless so stated.