University of Connecticut, USA.
Connecticut Institute for the Brain and Cognitive Sciences, USA.
Autism. 2023 Nov;27(8):2218-2240. doi: 10.1177/13623613231166749. Epub 2023 May 8.
Although exclusion of racially and ethnically minoritized autistic individuals from research is a long-standing issue, we have yet to determine how exclusion impacts areas of autism research important for identifying language impairment. Diagnosis depends on the quality of the evidence (i.e. research) and is often the pathway to gaining access to services. As a first step, we examined how research studies related to language impairment in school-age autistic individuals report participant socio-demographics. We analyzed reports using age-referenced assessments in English ( = 60), which are commonly used by both practitioners and researchers to diagnose or identify language impairment. Findings showed only 28% of studies reported information on race and ethnicity; in these studies, most (at least 77%) of the participants were white. In addition, only 56% of studies reported gender or sex specified what they were reporting (gender, sex, or gender identity). Just 17% reported socio-economic status using multiple indicators. Altogether, findings indicate broad issues with underreporting and exclusion of racially and ethnically minoritized individuals, which might overlay with other aspects of identity including socio-economic status. It is impossible to determine the extent and precise nature of exclusion without intersectional reporting. To ensure that language in autism research is representative of the autistic population, future research must implement reporting guidelines and broaden inclusion of who participates in research studies.
尽管将少数族裔自闭症患者排除在研究之外是一个长期存在的问题,但我们仍未确定这种排除对自闭症研究中确定语言障碍相关领域的影响。诊断取决于证据(即研究)的质量,并且通常是获得服务的途径。作为第一步,我们研究了与学龄自闭症患者语言障碍相关的研究报告如何报告参与者的社会人口统计学信息。我们使用英语( = 60)进行了年龄参照评估报告分析,这是从业者和研究人员常用的方法来诊断或识别语言障碍。研究结果表明,只有 28%的研究报告了种族和民族信息;在这些研究中,大多数(至少 77%)参与者是白人。此外,只有 56%的研究报告了性别或性别的具体信息(性别、性或性别认同)。只有 17%的研究使用多个指标报告了社会经济地位。总的来说,研究结果表明,在报告和排除少数族裔和少数民族个体方面存在广泛的问题,这些问题可能与包括社会经济地位在内的其他方面的身份重叠。如果没有交叉报告,就不可能确定排除的程度和确切性质。为了确保自闭症研究中的语言能够代表自闭症人群,未来的研究必须实施报告准则,并扩大参与研究的人群。