Huang Yunhe, Arnold Samuel R C, Foley Kitty-Rose, Trollor Julian N
Department of Developmental Disability Neuropsychiatry (3DN), UNSW Sydney, Sydney, NSW, 2052, Australia.
The Cooperative Research Centre for Living With Autism (Autism CRC), Brisbane, QLD, Australia.
J Autism Dev Disord. 2024 Feb;54(2):518-531. doi: 10.1007/s10803-022-05811-9. Epub 2022 Nov 21.
This study aimed to explore experiences of support after adulthood autism diagnosis. In this mixed-methods survey study of 137 adults, we found that most common formal supports received were counselling and mental health. Common unmet support needs were sensory sensitivities and accessing other services. Cost, lack of information, and fear of not being taken seriously were common barriers. Informal support was mainly helpful for self-understanding and emotions toward diagnosis. Qualitative findings included difficulties accessing formal support, need for practical quality-of-life supports and support from autistic peers and online communities. Based on these findings, future development of supportive interventions should address unmet needs, improve access, and explore the integration of autistic peer support and online support into formal services.
本研究旨在探索成年后被诊断为自闭症后的支持体验。在这项对137名成年人的混合方法调查研究中，我们发现获得的最常见的正式支持是咨询和心理健康服务。常见的未满足的支持需求是感官敏感和获取其他服务。费用、信息不足以及担心不被重视是常见的障碍。非正式支持主要有助于自我理解和对诊断的情绪处理。定性研究结果包括获得正式支持的困难、对实际生活质量支持的需求以及来自自闭症同伴和在线社区的支持。基于这些发现，支持性干预措施的未来发展应满足未满足的需求、改善获取途径，并探索将自闭症同伴支持和在线支持纳入正式服务。
