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Sociodemographic and Clinical Profile of 915 Autistic Preschoolers Engaged in Intensive Early Intervention in
Jessica Mead1, Tae-Jun Lee2, Ashleigh Bullot2
1AEIOU Foundation, 60 Leichhardt Street, Spring Hill, Brisbane, 4000, QLD, Australia. jessica.mead@aeiou.org.au.
Insights
This study profiles 915 autistic children needing high support in Australia, finding significant delays in diagnosis and intervention. Results highlight cognitive and adaptive deficits, informing tailored support for these children.
Area of Science:
- Developmental Psychology
- Clinical Psychology
- Pediatric Health
Background:
- Limited data exists on sociodemographic and clinical profiles of autistic children with high support needs.
- Early intervention is crucial for autistic children, yet specific needs of high-support individuals require further characterization.
Purpose of the Study:
- To profile a cohort of 915 autistic children receiving full-time early intervention in Australia.
- To examine sociodemographic, clinical, and family characteristics of autistic children with high support needs.
- To identify delays in diagnosis and intervention and associated cognitive and adaptive outcomes.
Main Methods:
- Longitudinal cohort study of 915 children enrolled in early intervention for autism spectrum disorder (ASD) in Australia (2012-2024).
- Utilized intake questionnaires for sociodemographic data, and clinical measures including the Autism Diagnostic Observation Schedule (2nd ed.), Mullen Scales of Early Learning, and Vineland Adaptive Behaviour Scale (2nd and 3rd eds.).
- Assessed family factors using the Parenting Stress Index (4th ed., Short Form) and Autism Family Experience Questionnaire.
Main Results:
- A male to female ratio of 3.8:1 was observed.
- Significant delays were noted from the age of first concern to diagnosis and initiation of intervention.
- Clinical data revealed cognitive and adaptive deficits exceeding those reported in other ASD studies, while family stress and experiences were comparable to existing literature.
Conclusions:
- The study provides a detailed profile of autistic children with high support needs, highlighting critical delays in the diagnostic and intervention pathway.
- Findings underscore the need for tailored approaches to support the unique cognitive and adaptive challenges faced by this population.
- This research aims to inform more nuanced clinical practice and policy development for autistic children requiring intensive support.
Abstract:
There is a paucity of information on the sociodemographic and clinical characteristics of autistic children with high support needs. This study aims to address this gap by profiling a cohort of 915 children enrolled in full-time early intervention for autism spectrum disorder (ASD) in Australia between 2012 and 2024. Intake questionnaires assessed the sociodemographic characteristics of families entering the service. Clinical measures included the Autism Diagnostic Observation Schedule (2nd ed.), Mullen Scales of Early Learning, and Vineland Adaptive Behaviour Scale (2nd and 3rd eds.). Family measures included the Parenting Stress Index (4th ed., Short Form) and Autism Family Experience Questionnaire. Results indicated a male to female ratio of 3.8:1, clear delays from the age of first concern to diagnosis and intervention, and notable proportions of culturally diverse families. While clinical data indicated cognitive and adaptive deficits beyond findings in other ASD studies, measures of stress and family experiences were comparable to other autism literature. By reporting these findings, this study aims to facilitate a more informed, tailored and nuanced approach to addressing the unique challenges faced by autistic children with high support needs. The scope and limitations of this cohort are discussed.
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