Jackie Ryan, Heather M Brown, Anne Borden, Christina Devlin, Adam Kedmy, Austin Lee, David B Nicholas, Bethan Kingsley, Sandy Thompson-Hodgetts
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Being able to be myself: Understanding autonomy and autonomy-support from the perspectives of autistic adults with intellectual disabilities.
Lay abstract: Autistic young adults with intellectual disabilities want to be autonomous but are less autonomous than other people. However, they can be autonomous with appropriate support. We wanted to learn how we can support autistic adults with intellectual disabilities to be more autonomous. We designed our study with help from five autistic community partners to make sure the research was relevant to autistic people and would improve their lives. We talked with eight autistic young adults with intellectual disabilities about autonomy. We defined "talk" as verbal language, as well as non-verbal cues such as body language, facial expressions, vocalizations, and laughter. We did art projects and played games while we talked. We met in small groups over multiple sessions. Our participants told us that being autonomous meant being able to be themselves. They told us three main ways to support their autonomy: (1) having choice and control, (2) being able to communicate in their own way, and (3) being in a safe environment. Families, support staff, and caregivers can use this information to help autistic young adults with intellectual disabilities to be autonomous.
期刊介绍:
Autism is a major, peer-reviewed, international journal, published 8 times a year, publishing research of direct and practical relevance to help improve the quality of life for individuals with autism or autism-related disorders. It is interdisciplinary in nature, focusing on research in many areas, including: intervention; diagnosis; training; education; translational issues related to neuroscience, medical and genetic issues of practical import; psychological processes; evaluation of particular therapies; quality of life; family needs; and epidemiological research. Autism provides a major international forum for peer-reviewed research of direct and practical relevance to improving the quality of life for individuals with autism or autism-related disorders. The journal''s success and popularity reflect the recent worldwide growth in the research and understanding of autistic spectrum disorders, and the consequent impact on the provision of treatment and care. Autism is interdisciplinary in nature, focusing on evaluative research in all areas, including: intervention, diagnosis, training, education, neuroscience, psychological processes, evaluation of particular therapies, quality of life issues, family issues and family services, medical and genetic issues, epidemiological research.