PDF(Pubmed)
Abstract：
Autism spectrum disorder (ASD) is characterized by challenges in social communication and the presence of repetitive behaviors or restricted interests. Notably, males are four times as likely as females to be diagnosed with autism. Despite efforts to increase representation and characterization of autistic females, research studies consistently enroll small samples of females, or exclude females altogether. Importantly, researchers often rely on standardized measures to confirm diagnosis prior to enrollment in research studies. We retrospectively analyzed the effects of one such measure (Autism Diagnostic Observation Schedule, ADOS) on research inclusion/exclusion rates by sex in autistic adults, all of whom had a preexisting community diagnosis of autism (n = 145, 95 male, 50 female). Using the ADOS as a confirmatory diagnostic measure resulted in the exclusion of autistic females at a rate over 2.5 times higher than that of autistic males. We compared sex ratios in our sample to those in other large, publically available datasets that rely either on community diagnosis (6 datasets, total n = 42,209) or standardized assessments (2 datasets, total n = 214) to determine eligibility of participants for research. Reliance on community diagnosis rather than confirmatory diagnostic assessments resulted in significantly more equal sex ratios. These results provide evidence for a \"leaky\" recruitment-to-research pipeline for females in autism research. LAY SUMMARY: Despite efforts to increase the representation of autistic females in research, studies consistently enroll small samples of females or exclude females altogether. We find that despite making up almost 50% of the initially recruited sample based upon self-report of community diagnosis, autistic females are disproportonately excluded from research participation as a result of commonly used autism diagnostic measures. In our sample, and several other publically available datasets, reliance on community diagnosis resulted in significantly more equal sex ratios.
摘要：
自闭症谱系障碍（ASD）的特征是社交交流中的挑战以及重复行为或兴趣受限的存在。值得注意的是,男性被诊断为自闭症的可能性是女性的四倍。尽管努力增加自闭症女性的代表性和特征，研究持续招募女性的小样本，或者完全排除女性。重要的是,研究人员通常在纳入研究之前依靠标准化措施来确认诊断.我们回顾性分析了其中一项措施的效果(自闭症诊断观察时间表，ADOS）关于自闭症成年人按性别划分的研究纳入/排除率，所有这些人都有自闭症的社区诊断(n=145，95男性，50女）。使用ADOS作为确证的诊断措施，导致自闭症女性的排斥率比自闭症男性高2.5倍。我们将样本中的性别比例与其他大型样本中的性别比例进行了比较，依赖于社区诊断的公开可用数据集(6个数据集，总计n=42,209)或标准化评估(2个数据集，总计n=214)以确定参与者的研究资格。依靠社区诊断而不是确证性诊断评估，性别比例明显相等。这些结果为自闭症研究中女性的“泄漏”招募研究管道提供了证据。总结：尽管努力增加自闭症女性在研究中的代表性，研究始终纳入女性的小样本或完全排除女性。我们发现，尽管根据社区诊断的自我报告占最初招募样本的近50％，由于常用的自闭症诊断措施，自闭症女性被排除在研究参与之外。在我们的样本中，和其他几个公开可用的数据集，对社区诊断的依赖导致性别比例更加平等.
