Department of Psychological Sciences, University of Connecticut, Storrs.
Connecticut Institute of the Brain and Cognitive Sciences, Storrs.
Am J Speech Lang Pathol. 2023 May 4;32(3):977-988. doi: 10.1044/2023_AJSLP-22-00341. Epub 2023 Mar 16.
Language and autism research each typically excludes racially and ethnically minoritized (REM) autistic individuals. In addition, in the case of autistic individuals with language impairment, investigators often approach caregivers to discuss research participation, rather than autistic individuals themselves. This gap limits the ecological validity of language research in autism. To address this gap, this clinical focus article describes strategies for engaging REM autistic young adults with language impairment using lessons learned from 5 years of longitudinal research with this population. This approach involved an ongoing community partnership, as well as participatory partnerships with REM autistic individuals and community stakeholders, consistent with a "slow science" approach.
The approach yielded excellent retention of participants over 5 years and led to co-development of research projects aimed at priorities described by REM autistic individuals and their families, including understanding self-determination, social determinants of health, and language variability in autistic REM individuals with language impairment. Findings support the utility of community-based methods with autistic REM young adults with language impairment, with key takeaways for diversifying research while replicating, extending, and building theory.
语言和自闭症研究通常都将少数族裔和少数民族（REM）自闭症个体排除在外。此外，对于语言障碍的自闭症个体，研究人员通常会与照顾者讨论研究参与问题，而不是与自闭症个体本人进行讨论。这种差距限制了自闭症语言研究的生态有效性。为了解决这一差距，本临床重点文章描述了使用从对该人群进行的 5 年纵向研究中吸取的经验，来吸引 REM 自闭症青年的策略。这种方法涉及到一个持续的社区合作伙伴关系，以及与 REM 自闭症个体和社区利益相关者的参与式合作伙伴关系，这与“慢科学”方法一致。
该方法在 5 年内实现了参与者的出色保留率，并导致共同制定了研究项目，这些项目旨在满足 REM 自闭症个体及其家人所描述的优先事项，包括了解自主决定、健康的社会决定因素，以及语言障碍的 REM 自闭症个体的语言变异性。研究结果支持了针对 REM 自闭症青年语言障碍者的基于社区的方法的有效性，为多样化研究提供了重要经验，同时复制、扩展和建立理论。
