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The earlier, the better? Diagnostic experiences of parents in a community-based early intervention system for preschool children with autism
Autism & Developmental Language Impairments ( IF 2.5 ) Pub Date : 2019-01-01 , DOI: 10.1177/2396941519845201
Mitsuaki Iwasa 1 , Yasuo Shimizu 1 , Ikuko Hara 1 , Miho Imai 2 , Hideo Honda 3
Affiliation  

Background and aims In many countries, early detection and diagnosis of autism spectrum disorder is largely dependent on parents’ initial concern with early symptoms of autism spectrum disorder. Previous research on parental perceptions of the autism spectrum disorder diagnostic process indicates that parental satisfaction may be due to either the timing of the diagnostic notification or the provision of post-diagnostic support. The objective of this research is to study the diagnostic notification process and its impact on parents who are informed of their young child’s diagnosis before they notice a problem and whose child undergoes early intervention therapy. Methods Eighty parents of preschool children diagnosed and undergoing early intervention for autism were surveyed to examine their experience of the diagnostic disclosure process. Results Of 68 respondents, 39 (58.2%) approved of the timing of diagnostic notification, while 10 of 13 dissatisfied respondents indicated that the diagnosis was communicated too late. However, there was no correlation between a higher degree of parental satisfaction with the diagnostic notification process and earlier timing of notification. Conclusions Although it is preferable to communicate a diagnosis of childhood autism as soon as possible, findings suggest that a highly individualized approach, allowing a degree of latitude in the timing of notification, may be permissible, depending on the individual case and parental readiness to receive the diagnosis. Implications Findings have clinical implications related to the concept of optimality of diagnostic disclosure as related to the diagnostic notification process, though later notification tends to lead to more dissatisfaction.

中文翻译:

越早越好 在基于社区的学龄前儿童自闭症早期干预系统中父母的诊断经验

背景和目的在许多国家,自闭症谱系障碍的早期发现和诊断很大程度上取决于父母对自闭症谱系障碍的早期症状的最初关注。以前对自闭症谱系障碍诊断过程的父母感知的研究表明,父母的满意度可能是由于诊断通知的时间安排或提供了诊断后支持。这项研究的目的是研究诊断通知程序及其对父母的影响,这些父母在幼儿注意到问题之前就已经知道了幼儿的诊断,并且其子女接受了早期干预治疗。方法对80名被诊断为自闭症且接受早期干预的学龄前儿童父母进行调查,以了解他们在诊断披露过程中的经验。结果68位受访者中,有39位(58.2%)批准了诊断通知的时间安排,而13位不满意的受访者中有10位表示诊断沟通太迟。但是,父母对诊断通知过程的满意度较高与通知时间提前之间没有相关性。结论尽管尽早对儿童自闭症的诊断进行沟通是可取的,但研究结果表明,允许高度个性化的方法,允许在通知的时间上有一定的自由度,这取决于个人情况和父母是否愿意接受诊断。启示研究结果具有与诊断通知过程相关的诊断披露最优性概念的临床意义,
更新日期:2019-01-01
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