Derguy Cyrielle, Frybourg L, Dexet M, Cappe E
Université Paris Cité, LPPS, F-92100, Boulogne-Billancourt, France.
Laboratoire de Psychopathologie et Processus de Santé, EA 4057, Université Paris Descartes, Sorbonne Paris Cité, 71 Avenue E. Vaillant, 92100, Boulogne-Billancourt, France.
J Autism Dev Disord. 2025 Sep 9. doi: 10.1007/s10803-025-06975-w.
Parents of adults with autism spectrum disorders (ASD) face significant challenges, including high vulnerability to stress and a lack of adequate support services. However, there are currently few support systems based on a genuine assessment of their needs. This is particularly true in the French context, where there are delays in supporting families and addressing autism in adulthood. This exploratory study aims to identify the specific needs of parents of adults with ASD, both with and without intellectual disabilities, in order to inform the development of relevant support strategies. Thirty parents of adults with autism spectrum disorders (ASD) participated in semi-structured interviews. An inductive thematic analysis was performed. Our findings identified five overarching themes of needs, encompassing 13 sub-themes. The analysis also highlighted differences in the nature of reported needs based on whether the autistic adult has an associated intellectual disability. Our results are discussed to propose practical recommendations for formalizing a support offer for parents that takes into account the reality of their needs.
患有自闭症谱系障碍（ASD）的成年人的父母面临着重大挑战，包括极易受到压力影响以及缺乏足够的支持服务。然而，目前基于对他们需求的真正评估而建立的支持系统很少。在法国的情况下尤其如此，在支持家庭和解决成年人自闭症问题方面存在延迟。这项探索性研究旨在确定患有ASD的成年人的父母（无论是否有智力障碍）的具体需求，以便为制定相关支持策略提供信息。30位患有自闭症谱系障碍（ASD）的成年人的父母参与了半结构化访谈。进行了归纳主题分析。我们的研究结果确定了五个总体需求主题，包括13个子主题。分析还突出了根据自闭症成年人是否伴有智力障碍而报告的需求性质的差异。我们讨论了研究结果，以提出切实可行的建议，为考虑到父母需求实际情况的正式支持提议提供依据。
