Okumura Megumi J, Selling Sarah Kate, Uba Allison, Martin-Herz Susanne P, Seretan Heidi H, Rosene Lisa, Cohen Jacy, Tebb Kathleen P, Rehm Roberta S
Divisions of General Pediatrics, General Internal Medicine and Philip R. Lee Institute for Health Policy Studies, 490 Illinois Street, Floor 7, Campus Box 0936, San Francisco, CA 94158, USA.
School of Medicine, Stanford University, 291 Campus Drive, Stanford, CA 94305, USA.
Health Care Transit. 2024 Jan 12;2:100038. doi: 10.1016/j.hctj.2023.100038. eCollection 2024.
Young adults with autism spectrum disorder (YAASD) often lack the skills needed for successful adult living and subsequently develop lower quality of life and health in adulthood. Therefore, we developed a framework to support resilience and improve quality of life in YAASD, which will be used to develop a life-skills curriculum for YAASD.
We conducted a qualitative study of YAASD, parents of YAASD and service providers recruited from agencies that serve YAASD using Grounded Theory. We focused our interviews on supports and skills needed to enhance quality of life in adulthood.
A total of 23 individuals were interviewed. We developed the major theoretical code; "Self-actualization skills in young adults with autism to improve quality of life". This code recognized the neurodiversity of YAASD as well as comorbid intellectual disability and mental health needs, which often were additional barriers to achieving life goals. We identified the need for developing skills to facilitate both independence and greater insight, including self-care, self-advocacy, and social integration. YAASD struggled in developing skills to adapt to the constantly changing environment that neurotypical adults deal with daily. Factors that would facilitate development of self-actualizing skills include resources that promote creating structure in an adult world that can appear unstructured to YAASD.
Self-actualization for adults requires skills for self-care, decision making, and effective communication. Unfortunately, most programs for YAASD emphasize vocational and simple task performance. Our framework facilitates self-actualization skills to enhance health and wellness, potentially reducing barriers to living meaningfully within the community.
患有自闭症谱系障碍的年轻人（YAASD）往往缺乏成功成年生活所需的技能，随后成年后的生活质量和健康状况较低。因此，我们开发了一个框架来支持YAASD的复原力并改善其生活质量，该框架将用于为YAASD制定生活技能课程。
我们对从为YAASD服务的机构招募的YAASD、YAASD的父母和服务提供者进行了一项基于扎根理论的定性研究。我们的访谈重点是提高成年生活质量所需的支持和技能。
共采访了23人。我们制定了主要的理论代码；“自闭症青少年自我实现技能以提高生活质量”。该代码认识到YAASD的神经多样性以及合并的智力残疾和心理健康需求，这些往往是实现生活目标的额外障碍。我们确定需要培养促进独立和更深刻洞察力的技能，包括自我照顾、自我倡导和社会融合。YAASD在培养适应神经典型成年人日常应对的不断变化环境的技能方面存在困难。有助于发展自我实现技能的因素包括促进在对YAASD来说可能显得无组织的成人世界中创造结构的资源。
成年人的自我实现需要自我照顾、决策和有效沟通的技能。不幸的是，大多数针对YAASD的项目都强调职业和简单任务表现。我们的框架促进自我实现技能以增强健康，有可能减少在社区中有意义生活的障碍。
