Exploring Factors of Diagnostic Timing Among Black Autistic Youth

Harlee Onovbiona , Lauren Quetsch , Emily-Anne Del Rosario

Abstract

The goal of the present study was to compare profiles among Black families of autistic youth who were identified Early (≤ 2 years of age), Mid (age 3 or 4), and Delayed (≥ 5 years of age) to better identify the characteristics that contribute to early ASD identification and delayed ASD identification. Black caregivers with autistic youth (N = 101) were divided into Early (N = 34), Mid (N = 39), and Delayed (N = 28) groups and compared on (a) the age at which signs of autism signs were first noticed, (b) wait times, (c) previous misdiagnoses rates, and (d) racial barriers experienced during the diagnostic process. The results revealed differences between the diagnostic profiles. Specifically, (a) Delayed families noticed the first signs of autism significantly later, (b) Early families had significantly smaller wait times between age of noticing signs of autism and age of receiving the diagnosis, (c) the odds of receiving a later or delayed autism diagnosis was nearly three times higher for caregivers who reported receiving a misdiagnosis, and (d) there were no significant differences in racial barriers experienced between Early, Mid, and Delayed families. Challenges in receiving a timely diagnosis remain for some Black autistic youth. To improve early identification for Black autistic youth who are at risk for receiving delayed diagnostic care, further research should examine factors and practices that improve autism knowledge among professionals and caregivers, enhance assessment practices, and integrate culturally responsive practices into assessment and screening procedures.

摘要

本研究的目的是比较早期（≤ 2岁）、中期（3或4岁）和延迟（≥ 5岁）自闭症青年黑人家庭的特征，以更好地确定有助于早期ASD识别和延迟ASD识别的特征。患有自闭症青年的黑人照顾者（N = 101）被分为早期（N = 34）、中期（N = 39）和延迟（N = 28）组，并比较了以下方面的差异:（a）首次发现自闭症体征的年龄，（b）等待时间，（c）既往误诊率，以及（d）诊断过程中遇到的种族障碍。结果显示了诊断谱之间的差异。具体来说，（a）迟发家庭发现自闭症的第一个迹象要晚得多，（b）早发家庭在发现自闭症迹象的年龄和接受诊断的年龄之间的等待时间要短得多，（c）报告误诊的照顾者接受晚发或迟发自闭症诊断的几率要高近三倍，以及（d）早发、中发和迟发家庭在种族障碍方面没有显著差异。对于一些患有自闭症的黑人青年来说，及时接受诊断仍然存在挑战。为了提高有接受延迟诊断护理风险的黑人自闭症青年的早期识别率，进一步的研究应检查提高专业人员和护理人员自闭症知识的因素和实践，加强评估实践，并将文化响应实践纳入评估和筛查程序。