Pye Katherine, Gold Lisa, Le Ha N D, Iacono Teresa
Institute of Health Transformation, School of Health and Social Development, Deakin University, Geelong, Australia.
School of Allied Health, Human Services and Sport, La Trobe University, Melbourne, Australia.
J Autism Dev Disord. 2025 May 10. doi: 10.1007/s10803-025-06850-8.
The effectiveness of early supports for Autistic children has predominantly been measured in terms of changes in their development, such as language, cognition or adaptive behaviour. The benefits of early supports to children include, and are moderated by, effects on caregivers and families. We sought to understand perspectives of primary caregivers of children who, whether or not formally diagnosed, they believed to be Autistic, about the value of different aspects of early supports. We interviewed 19 caregivers, selected from a larger survey sample (n = 95) to cover a range of backgrounds and experiences accessing supports. We conducted reflexive thematic analysis to identify themes. We identified four themes through reflexive thematic analysis. Themes reflected common aspirations to optimise their children's future wellbeing. Despite public funding for early supports, families' other resources (especially time and mental load) were under pressure, impacting other activities such as employment and family relationships. Participants preferred supports that were adaptable to their changing needs, neuroaffirming and practical; they particularly valued authentic emotional support from therapists and sought providers they could trust. Our analysis suggests that family experiences of accessing supports might be just as important as the intended outcomes.
对自闭症儿童早期支持的有效性主要是根据他们在语言、认知或适应性行为等方面的发展变化来衡量的。早期支持对儿童的益处包括对照顾者和家庭的影响，且这些影响会受到调节。我们试图了解那些认为自己孩子患有自闭症（无论是否经过正式诊断）的儿童主要照顾者对早期支持不同方面价值的看法。我们从一个更大的调查样本（n = 95）中挑选了19名照顾者进行访谈，以涵盖一系列背景以及获得支持的经历。我们进行了反思性主题分析以确定主题。通过反思性主题分析，我们确定了四个主题。这些主题反映了他们希望优化孩子未来福祉的共同愿望。尽管有公共资金用于早期支持，但家庭的其他资源（尤其是时间和心理负担）仍面临压力，影响了就业和家庭关系等其他活动。参与者更喜欢能够适应他们不断变化的需求、具有神经肯定性且实用的支持；他们特别重视治疗师给予的真实情感支持，并寻求他们可以信任的提供者。我们的分析表明，家庭获得支持的经历可能与预期结果同样重要。
