Reuben Katherine E, Arias Jalayne J, Self-Brown Shannon, Vinoski Thomas Erin
School of Public Health, Georgia State University, P.O. Box 3995, 140 Decatur St. SE, Atlanta, GA, 30303, USA.
Center for Research on Interpersonal Violence, Georgia State University, P.O. Box 3995, 140 Decatur St. SE, Atlanta, GA, 30303, USA.
J Autism Dev Disord. 2025 Sep;55(9):3410-3415. doi: 10.1007/s10803-025-06905-w. Epub 2025 Jun 4.
Autistic individuals with higher support needs, including those with co-occurring intellectual disability (ID) and language impairment (LI), are underrepresented in research. Researchers who attempt to include this population face unique challenges regarding participant recruitment, informed consent, accurate measurement, and protecting privacy and confidentiality. This leads to gaps in understanding as well as a lack of evidence-based support for clinical and public health practice. Careful consideration is needed to ensure that autism research is appropriately inclusive and does not unduly burden vulnerable populations. This commentary uses the Kass framework as an example scaffold for navigating complex ethical challenges and improving accessibility and fairness in autism research. It reviews existing literature on the topic, and the resulting recommendations are informed by autistic individuals with substantial support needs. Increased representation of the full autism spectrum in research is necessary to ensure equitable health outcomes for all autistic individuals. Ethical analysis, guidance from autism research organizations, and recommendations from autistic adults can assist with this process.
包括同时患有智力障碍(ID)和语言障碍(LI)的个体在内,支持需求较高的自闭症患者在研究中的代表性不足。试图纳入这一人群的研究人员在参与者招募、知情同意、准确测量以及保护隐私和保密性方面面临独特挑战。这导致了认识上的差距,以及缺乏基于证据的临床和公共卫生实践支持。需要仔细考虑以确保自闭症研究具有适当的包容性,且不会给弱势群体带来过度负担。本评论以卡斯框架为例,作为应对复杂伦理挑战以及提高自闭症研究的可及性和公平性的示例框架。它回顾了关于该主题的现有文献,所得建议由支持需求较高的自闭症患者提供。提高整个自闭症谱系在研究中的代表性对于确保所有自闭症患者获得公平的健康结果至关重要。伦理分析、自闭症研究组织的指导以及成年自闭症患者的建议有助于这一过程。