Pellicano Elizabeth, Lawson Wenn, Hall Gabrielle, Mahony Joanne, Lilley Rozanna, Davis Catherine, Arnold Samuel, Trollor Julian, Yudell Michael
Macquarie School of Education, Macquarie University, Sydney, New South Wales, Australia
Cooperative Research Centre for Living with Autism (Autism CRC), Brisbane, Queensland, Australia.
BMJ Open. 2020 May 30;10(5):e037968. doi: 10.1136/bmjopen-2020-037968.
Receiving a diagnosis of autism in adulthood is increasingly common for a subset of individuals who were either misdiagnosed in childhood or missed out on a diagnosis altogether. This qualitative study, coproduced with autistic people, invites late-diagnosed autistic adults to share their life histories to (1) understand better the consequences of living without a diagnosis, (2) elucidate what precipitates an autism diagnosis in mid-to-late adulthood and (3) identify the perceived impact of receiving that diagnosis.
Oral histories have been a successful way to uncover overlooked and marginalised voices. We therefore adopt qualitative, oral history methodology in this study to understand these adults' experiences, especially of living in an era when autism was not well known. We will recruit 24 participants who will (1) have been born before 1975, (2) have received a clinical, autism diagnosis after the age of 35, (3) be English-speaking and (4) have spent most of their childhood and adulthood living in Australia. Participants will take part in four sessions, including the main, qualitative, oral history interview, through a range of possible formats to facilitate inclusion. The interview data will be analysed using reflexive thematic analysis.
The protocol has received institutional research ethics approval from Macquarie University's Human Research Ethics Committee (Ref.: 52019556310562). This study will yield understanding of the life experiences of autistic adults, especially middle-aged and older Australians, should inform more effective diagnostic practices and provide insight into the key factors that might promote resilience and enhance quality of life in autistic people. The findings will be disseminated to academic and clinical audiences through journal articles and conference presentations and to the autistic and autism communities through accessible reports. The interviews will also be prepared for digital archiving, which will enable ongoing access for future generations and communities.
对于一部分在童年时期被误诊或完全错过诊断的人来说，成年后被诊断为自闭症的情况越来越普遍。这项与自闭症患者共同开展的定性研究，邀请成年后才被诊断为自闭症的人分享他们的生活经历，以（1）更好地理解在未被诊断的情况下生活的后果，（2）阐明在成年中后期促成自闭症诊断的因素，以及（3）确定接受该诊断所感受到的影响。
口述历史是揭示被忽视和边缘化声音的一种成功方式。因此，我们在本研究中采用定性口述历史方法，以了解这些成年人的经历，尤其是生活在一个自闭症尚不为人所知的时代的经历。我们将招募24名参与者，他们需满足以下条件：（1）1975年以前出生；（2）35岁以后获得临床自闭症诊断；（3）说英语；（4）童年和成年的大部分时间生活在澳大利亚。参与者将参加四个环节，包括主要的定性口述历史访谈，通过一系列可能的形式以促进参与。访谈数据将采用反思性主题分析进行分析。
该方案已获得麦考瑞大学人类研究伦理委员会的机构研究伦理批准（参考编号：52019556310562）。这项研究将有助于了解自闭症成年人，尤其是澳大利亚中年及老年自闭症患者的生活经历，为更有效的诊断实践提供参考，并深入了解可能促进自闭症患者恢复力和提高生活质量的关键因素。研究结果将通过期刊文章和会议报告传播给学术和临床受众，并通过通俗易懂的报告传播给自闭症患者群体和自闭症社群。访谈内容也将准备进行数字存档，以便后代和社群能够持续访问。
