连接、服务和适应:患有自闭症的拉丁裔青少年、家长和服务提供者对成年过渡期的看法

IF 1.5 4区 医学 Q2 EDUCATION, SPECIAL Journal of Developmental and Physical Disabilities Pub Date : 2024-06-24 DOI:10.1007/s10882-024-09974-4
Antonio F. Pagán, Juliana L. Vanderburg, Katherine A. Loveland, Ron E. Acierno, Thomas D. Meyer
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引用次数: 0

摘要

要推进对自闭症谱系障碍(ASD)患者的干预和支持,就必须了解自闭症谱系障碍是一种终身发展差异。然而,人们对拉丁裔社区中患有自闭症的年轻成年人、家长和社区提供者的独特经历知之甚少。本研究的目的是通过识别和了解自闭症青少年、家长和社区服务提供者在整个生命周期,尤其是在向成年过渡期间所遇到的障碍和需求,来改善包容性社区环境。10 名社区服务提供者、18 名自闭症儿童家长和 5 名年轻成人自我倡导者参加了焦点小组。家长们讨论了他们的孩子在整个生命过程中在获得服务方面遇到的困难,这些困难使得他们在向成年过渡时困难重重。讨论的主题突出了可能影响拉丁裔向成年过渡的重要文化价值观,以及获得双语服务提供者和服务的困难。家长们表现出了高超的宣传技巧和机智。我们就如何改善自闭症青少年和家长获得服务的途径并制定干预措施,提出了青少年、家长和服务提供者的共同建议。本研究对于通过开发适合拉丁裔社区文化的服务来推进对自闭症青少年及其父母的干预和支持具有重要意义。
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Connecting, Serving, and Adapting: Perspectives on the Transition to Adulthood from Latino Young Adults with ASD, Parents, and Providers

Advancing interventions and supports for individuals with autism spectrum disorder (ASD) requires understanding that ASD is a lifelong developmental difference. However, little is known about the unique experiences of autistic young adults, parents, and community providers in the Latino community. The purpose of this study was to improve access to inclusive community based setting by identifying and learning about barriers and needs experienced by young adults, parents, and community providers of autistic individuals across the lifespan, but particularly during the transition to adulthood. Ten community providers, eighteen parents of autistic children, and five young adult self-advocates participated in focus groups. Parents discussed difficulties in accessing services throughout their child’s life that made the transition to adulthood difficult. Themes highlighted important cultural values that can influence the transition to adulthood for Latinos and the difficulty in accessing bilingual service providers and services. Parents displayed significant advocacy skills and resourcefulness. We present recommendations shared by young adults, parents, and providers on ways to improve access to services and develop interventions for autistic young adults and parents. The present study has important implications regarding advancing interventions and supports for autistic young adults and their parents in the Latino community by developing culturally adapted services.

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来源期刊
CiteScore
3.40
自引率
5.60%
发文量
54
期刊介绍: The Journal of Developmental and Physical Disabilities is an interdisciplinary forum for the publication of original research and clinical reports from a variety of fields serving persons with developmental and physical disabilities. Submissions from researchers, clinicians, and related professionals in the fields of psychology, rehabilitation, special education, kinesiology, counseling, social work, psychiatry, nursing, and rehabilitation medicine are considered. Investigations utilizing group comparisons as well as single-case experimental designs are of primary interest. In addition, case studies that are of particular clinical relevance or that describe innovative evaluation and intervention techniques are welcome. All research and clinical reports should contain sufficient procedural detail so that readers can clearly understand what was done, how it was done, and why the strategy was selected. Rigorously conducted replication studies utilizing group and single-case designs are welcome irrespective of results obtained. In addition, systematic reviews, meta-analyses, and theoretical discussions that contribute substantially to understanding the problems and strengths of persons with developmental and physical disabilities are considered for publication. Authors are encouraged to preregister empirical studies, replications, systematic reviews, and meta-analyses in a relevant public database and to include such information with their submission to the journal. Authors are also encouraged, where possible and applicable, to deposit data that support the findings of their research in a public repository (see detailed “Research Data Policy” module in the journal’s Instructions for Authors). In response to the need for increased clinical and research endeavors with persons with developmental and physical disabilities, the journal is cross-categorical and unbiased methodologically.
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