自闭症之声：对自闭症青年的需求、挑战和未来希望的视角

作者：

Tesfaye,R (Tesfaye,Rackeb) ; Courchesne,V (Courchesne,Valerie) ;等；

摘要：

The Autism Voices study draws on novel inclusive methods to obtain the first-person experiences of autistic youth with a range of cognitive and verbal abilities. Thirty-one autistic youth were interviewed with a strength-based protocol, enabling them to provide responses in the modality of their choice. Dynamics between youth and their environments such as home, school, and community were explored. Youth were questioned about their interests, plans for the future, experiences with various emotions, and experience of autism. Based on a thematic analysis, six themes emerged: (1) autistic identities, (2) thinking about the future, (3) seeking social connection on their own terms, (4) seeking autonomy, (5) school as both a stressor and social facilitator, and (6) experiences of stress and anxiety. The experiences described by autistic youth parallel many of the aspirations and challenges of typically developing adolescents, while being uniquely shaped by their autism. We discuss how these insights shared by autistic youth can facilitate active involvement in their communities, promote well-being, and promote optimal transition into adulthood. Autism Voices demonstrates that partnering with multiple stakeholders and the use of inclusive methodologies are pivotal steps toward capturing the voices of all autistic youth. Lay abstract Currently, our understanding of the adolescent period for autistic youth has relied on the expertise of researchers, clinicians, parents, and teachers, yet rarely involves their unique first-person experiences. Our study attempted to understand the experiences and perspectives of autistic adolescents in their home, school, and community environments using the Autism Voices protocol, a semi-structured interview specifically designed and tailored to engage with autistic youth with various language and intellectual levels. The analysis of the 31 interviews conducted with autistic adolescents aged 11-18 years highlighted six themes: (1) autistic identities, (2) thinking about the future, (3) seeking social connection on their own terms, (4) seeking autonomy, (5) school as both a stressor and social facilitator, and (6) experiences of stress and anxiety. These results highlight similarities and differences in the adolescent experiences of autistic youth compared to their typically developing peers. Our findings suggest that by removing assumptions about the experiences of autistic individuals and investing in inclusive interview methods, we can faithfully capture the experiences of autistic youth regardless of their communication and cognitive abilities. Being able to capture and amplify these diverse voices will facilitate the active involvement of autistic communities in research and clinical and policy decisions that impact them.

《自闭症之声》研究利用新颖的包容性方法获取了自闭症青年的第一人称经验，这些青年具有各种认知和语言能力。对三十一名自闭症青年进行了基于优势的访谈协议，使他们能够以自己选择的方式进行回答。探讨了青年与家庭、学校和社区等环境之间的动态关系。对青年的兴趣、未来计划、各种情绪体验和自闭症经历进行了询问。基于主题分析，出现了六个主题：（1）自闭症身份，（2）思考未来，（3）在自己的条件下寻求社交联系，（4）追求自主权，（5）学校既是压力源又是社交促进者，以及（6）压力和焦虑的经历。自闭症青年描述的经历与通常发育的青少年的许多愿望和挑战相似，但受到他们自身自闭症的独特塑造。我们讨论了自闭症青年分享的这些见解如何促进他们积极参与社区，促进健康，并促进顺利过渡到成年生活。《自闭症之声》表明，与多方利益相关者合作和使用包容性方法是捕捉所有自闭症青年声音的关键步骤。摘要目前，我们对于自闭症青年的青少年时期的理解主要依赖于研究人员、临床医生、家长和教师的专业知识，但很少涉及到他们独特的第一人称经验。我们的研究试图使用《自闭症之声》协议，这是一个半结构化访谈，专门设计和定制，旨在与具有不同语言和智力水平的自闭症青年进行互动，以理解他们在家庭、学校和社区环境中的经验和观点。对年龄在11-18岁之间的31名自闭症青少年进行的访谈分析突出了六个主题：（1）自闭症身份，（2）思考未来，（3）在自己的条件下寻求社交联系，（4）追求自主权，（5）学校既是压力源又是社交促进者，以及（6）压力和焦虑的经历。这些结果突显了自闭症青少年与他们通常发育的同龄人之间的青少年经历中的相似之处和差异之处。我们的研究结果表明，通过消除对自闭症个体经验的假设，并投资于包容性访谈方法，我们可以忠实地捕捉自闭症青年的经验，而不受其沟通和认知能力的影响。能够捕捉和放大这些多样化的声音将有助于自闭症社区积极参与对他们产生影响的研究、临床和政策决策。