Exclusion of females in autism research: Empirical evidence for a "leaky" recruitment-to-research pipeline.
Exclusion of females in autism research: Empirical evidence for a "leaky" recruitment-to-research pipeline.
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DOI：
10.1002/aur.2795
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发表时间：
2022-10
期刊：
影响因子：
--
通讯作者：
Gabrieli JDE
中科院分区：
文献类型：
--
作者：
D'Mello AM;Frosch IR;Li CE;Cardinaux AL;Gabrieli JDE
自闭症谱系障碍（ASD）的特点是社会沟通的挑战和重复行为或有限的兴趣的存在。值得注意的是，男性被诊断患有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，研究始终招募小样本的女性，或完全排除女性。重要的是，研究人员通常依赖于标准化的措施，以确认诊断之前，登记在研究研究。我们回顾性分析了一个这样的措施（自闭症诊断观察计划，ADOS）的研究纳入/排除率按性别在自闭症成年人，所有这些人都有一个预先存在的社区诊断自闭症（n = 145，95男，50女）。使用ADOS作为一个验证性的诊断措施，导致排除自闭症女性的比率高于自闭症男性的2.5倍。我们将我们样本中的性别比例与其他大型数据集中的性别比例进行了比较，这些数据集依赖于社区诊断（6个数据集，总n = 42，209）或标准化评估（2个数据集，总n = 214）来确定参与者的研究资格。依赖社区诊断而不是验证性诊断评估导致性别比例明显更平等。这些结果为自闭症研究中女性的“泄漏”招募到研究管道提供了证据。尽管努力增加自闭症女性在研究中的代表性，但研究始终只招募小样本女性或完全排除女性。我们发现，尽管根据社区诊断的自我报告，自闭症女性占最初招募样本的近50%，但由于常用的自闭症诊断措施，自闭症女性被不成比例地排除在研究参与之外。在我们的样本和其他几个可用的数据集中，对社区诊断的依赖导致性别比例明显更平等。
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. 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.
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