Mead Jessica, Lee Tae-Jun, Bullot Ashleigh
AEIOU Foundation, 60 Leichhardt Street, Spring Hill, Brisbane, 4000, QLD, Australia.
J Autism Dev Disord. 2024 Oct 23. doi: 10.1007/s10803-024-06606-w.
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.
关于有高支持需求的自闭症儿童的社会人口学和临床特征的信息匮乏。本研究旨在通过对2012年至2024年期间在澳大利亚参加自闭症谱系障碍(ASD)全日制早期干预的915名儿童进行剖析来填补这一空白。入学调查问卷评估了进入该服务机构的家庭的社会人口学特征。临床测量包括《自闭症诊断观察量表》(第2版)、《马伦早期学习量表》和《文兰适应行为量表》(第2版和第3版)。家庭测量包括《育儿压力指数》(第4版,简表)和《自闭症家庭经历问卷》。结果显示男女比例为3.8:1,从首次关注到诊断和干预的年龄有明显延迟,且文化背景多样的家庭比例显著。虽然临床数据表明认知和适应缺陷超过了其他ASD研究的结果,但压力和家庭经历的测量结果与其他自闭症文献相当。通过报告这些发现,本研究旨在促进采取更明智、更有针对性和更细致入微的方法来应对有高支持需求的自闭症儿童所面临的独特挑战。讨论了该队列研究的范围和局限性。