Abstract
Early identification of children on the autism spectrum is crucial to facilitate access to early supports and services for children and families. The need for improved early autism identification tools is highlighted by the lack of sufficient diagnostic accuracy in current tools. To examine the diagnostic accuracy of the Social Attention and Communication Surveillance-Revised (SACS-R) and SACS-Preschool (SACS-PR) tools when used with a large, community-based, convenience sample and identify the prevalence of autism in this sample. This diagnostic accuracy study was conducted in Melbourne, Australia, training maternal and child health nurses who monitored 13 511 children aged 11 to 42 months using the SACS-R and SACS-PR during their routine consultations (June 1, 2013, to July 31, 2018). Children identified as being at high likelihood for autism (12-24 months of age: n = 327; 42 months of age: n = 168) and at low likelihood for autism plus concerns (42 months of age: n = 28) were referred by their maternal and child health nurse for diagnostic assessment by the study team. Data analysis was performed from April 13, 2020, to November 29, 2021. Children were monitored with SACS-R and SACS-PR at 12, 18, 24, and 42 months of age. Diagnostic accuracy of the SACS-R and SACS-PR was determined by comparing children's likelihood for autism with their diagnostic outcome using clinical judgment based on standard autism assessments (Autism Diagnostic Observation Schedule-Second Edition and Autism Diagnostic Interview-Revised). A total of 13 511 children (female: 6494 [48.1%]; male: 7017 [51.9%]) were monitored at least once with the SACS-R at their 12-, 18-, and 24-month-old routine maternal and child health consultations (mean [SD] age, 12.3 [0.59] months at 12 months; 18.3 [0.74] months at 18 months; 24.6 [1.12] months at 24 months) and followed up at their 42-month maternal and child health consultation (mean [SD] age, 44.0 [2.74] months) with SACS-PR (8419 [62.3%]). At 12 to 24 months, SACS-R showed high diagnostic accuracy, with 83% positive predictive value (95% CI, 0.77-0.87) and 99% estimated negative predictive value (95% CI, 0.01-0.02). Specificity (99.6% [95% CI, 0.99-1.00]) was high, with modest sensitivity (62% [95% CI, 0.57-0.66]). When the SACS-PR 42-month assessment was added, estimated sensitivity increased to 96% (95% CI, 0.94-0.98). Autism prevalence was 2.0% (1 in 50) between 11 and 30 months of age and 3.3% (1 in 31) between 11 and 42 months of age. The SACS-R with SACS-PR (SACS-R+PR) had high diagnostic accuracy for the identification of autism in a community-based sample of infants, toddlers, and preschoolers, indicating the utility of early autism developmental surveillance from infancy to the preschool period rather than 1-time screening. Its greater accuracy compared with psychometrics of commonly used autism screening tools when used in community-based samples suggests that the SACS-R+PR can be used universally for the early identification of autism.
Highlights
2% of individuals worldwide are on the autism spectrum,[1,2] with some studies reporting a prevalence of 4% or higher.[3]
When the Social Attention and Communication Study (SACS)-PR 42-month assessment was added, estimated sensitivity increased to 96%
There were 4971 children (37.6%) who were not followed up using the SACS-PR because of families moving to a nonparticipating local government area (n = 1256), not attending their 42-month maternal and child health (MCH) appointment (n = 1749), or not being able to be contacted by their MCH nurse (n = 1946)
Summary
2% of individuals worldwide are on the autism spectrum,[1,2] with some studies reporting a prevalence of 4% or higher.[3]. Identification can be achieved via single-time autism screening in the general population (level 1 tools) or targeted groups (level 2 tools), such as siblings of children on the autism spectrum or those in clinical settings (eg, hospitals). Many early autism screening tools exhibit limited accuracy and sensitivity and, in some cases, limited reporting of sufficient psychometrics to determine overall diagnostic accuracy, in community-based samples.[13,14]. In a systematic review[15] of universal autism screening in primary care, including the Infant-Toddler Checklist (ITC)[16] and the Modified Checklist for Autism in Toddlers (M-CHAT) and its iterations,[17-19] the authors noted that few studies included sufficient participant numbers to establish population sensitivity, specificity, and PPV. Psychometric properties reported were modest and/or wideranging, indicating lack of, or inconsistency in, the diagnostic accuracy of these tools
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