Centre for Developmental Psychiatry and Psychology, Department of Psychiatry, School of Clinical Sciences at Monash Health, Monash University, Clayton, Victoria, Australia.
Centre for Educational Development, Appraisal and Research, University of Warwick, Coventry, UK.
J Intellect Disabil Res. 2022 Jul;66(7):655-666. doi: 10.1111/jir.12953. Epub 2022 Jun 8.
Research suggests that adults with autism tend to have poor outcomes. Outcomes have mostly been defined using summary outcome ratings, with less focus on specific outcomes such as employment, living situation, social satisfaction, loneliness, and friendships. This study aimed to explore social and community outcomes, including employment, education, living arrangements, friendships, and social satisfaction, for autistic adults with and without intellectual disability.
Eighty-four adults with autism (mean age 34.2 years, SD = 4.5; 67% with co-occurring intellectual disability), recruited as children and adolescents, participated in the current study. Adult social and community inclusion outcomes were explored through interview and questionnaire, both parent/carer-report and self-report.
Participants predominantly lived with family or in supported accommodation, did not pursue higher education, and mostly participated in day activity programmes. Most had limited friendships as reported by parents/carers; however, self-report data (n = 28) indicated that adults were largely satisfied with their social relationships. Overall outcome was poor for 57%, and good/very good for 34%. Adults with intellectual disability generally had poorer outcomes.
Autistic adults encountered numerous difficulties in leading an independent life. Adults with co-occurring intellectual disability were most likely to experience difficulties; however, outcomes ranged from poor to very good for adults without intellectual disability. Discrepancies in parent/carer-report and self-reported experiences of friendships highlight the need to ensure individual experiences are captured in addition to parent/carer-report. Appropriate resources and programmes are crucial for adults with autism to support them to have the choice to live independently.
研究表明，自闭症成年人往往预后较差。这些结果主要是通过综合结果评估来定义的，而对就业、生活状况、社会满意度、孤独感和友谊等具体结果的关注较少。本研究旨在探讨自闭症成年患者（有无智力障碍）的社会和社区结果，包括就业、教育、生活安排、友谊和社会满意度。
84 名自闭症成年人（平均年龄 34.2 岁，标准差=4.5；67%伴有智力障碍），作为儿童和青少年被招募，参与了目前的研究。通过访谈和问卷调查，以及父母/照顾者报告和自我报告，探讨了成年后的社会和社区融入结果。
参与者主要与家人或在支持性住所居住，没有接受高等教育，主要参加日间活动项目。大多数人都被父母/照顾者报告为拥有有限的友谊；然而，自我报告数据（n=28）表明，成年人对他们的社交关系基本满意。57%的人整体预后较差，34%的人预后良好/非常好。有智力障碍的成年人通常预后较差。
自闭症成年人在独立生活方面遇到了许多困难。伴有智力障碍的成年人最有可能遇到困难；然而，无智力障碍的成年人的预后从差到非常好不等。父母/照顾者报告和自我报告的友谊体验之间的差异突出表明，除了父母/照顾者报告外，还需要确保捕捉到个人的体验。为自闭症成年人提供适当的资源和项目对于支持他们选择独立生活至关重要。
