This research explored parents’ lived experience of the autism spectrum disorder assessment process when a diagnosis was not received. Six mothers and one stepfather were interviewed and transcripts were analysed using interpretative phenomenological analysis. The identified themes: ‘My child is different’, The emotional and psychological journey and Understanding the outcome, illustrated issues encountered by parents during the assessment process and parenting a child with autistic-like characteristics but without a valid label. As a previously understudied area, clinical implications at the professional, service and policy level are discussed.

Lay abstract

Autism is diagnosed by a process of child assessment and parental interview. It has been well-documented by parents of children who received a diagnosis of autism, that the process can be lengthy and cause distress for families. Nevertheless, the outcome often compensated for the difficult assessment journey as it enables families to gain access to further information, support and intervention. However, less is known about the assessment process from parents who undertake the same process but at the end are told their child does not meet the diagnostic criteria, meaning no diagnosis is given. We interviewed six parents in North Wales, whose child did not receive a diagnostic of autism following an assessment. During the interview, parents were asked about their experience of the autism assessment process. We found that parents reflected on their experience according to three themes: (1) parents tried to navigate how they could make sense of their child being different despite not receiving a diagnosis; (2) parents referred to the assessment process as a journey, which encompassed many emotional and psychological components and (3) parents discussed what it was like to hear a non-diagnosis outcome, in terms of feeling relieved, confused and raising questions for the child’s future. These findings are important for professionals working in autism assessment services to help improve the assessment process for families, particularly when the assessment does not result in a diagnosis.

中文翻译：

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不为人知的观点：当孩子没有得到诊断时，父母对自闭症谱系障碍评估过程的体验

这项研究探讨了父母在未收到诊断时对自闭症谱系障碍评估过程的生活体验。六位母亲和一位继父接受了采访，并使用解释性现象学分析对成绩单进行了分析。确定的主题：“我的孩子是不同的”、情感和心理旅程以及了解结果，说明了父母在评估过程中遇到的问题，以及养育具有类似自闭症特征但没有有效标签的孩子。作为以前研究不足的领域，讨论了专业、服务和政策层面的临床意义。

摘要

自闭症是通过儿童评估和父母面谈的过程来诊断的。被诊断为自闭症的孩子的父母已经充分证明，这个过程可能会很长，并会给家庭带来痛苦。然而，结果往往弥补了艰难的评估过程，因为它使家庭能够获得更多信息、支持和干预。然而，对于执行相同过程但最终被告知他们的孩子不符合诊断标准的父母的评估过程知之甚少，这意味着没有给出诊断。我们采访了北威尔士的六位家长，他们的孩子在评估后没有得到自闭症的诊断。在采访中，家长们被问及他们在自闭症评估过程中的经历。我们发现父母根据三个主题反思他们的经历：（1）父母试图引导他们如何在没有接受诊断的情况下理解他们的孩子的不同；(2) 家长将评估过程称为一次旅程，其中包含许多情绪和心理成分； (3) 家长讨论听到非诊断结果的感觉，如松了口气、困惑和提出问题孩子的未来。这些发现对于从事自闭症评估服务的专业人员来说非常重要，可以帮助改善家庭的评估过程，尤其是在评估未得出诊断结果的情况下。(2) 家长将评估过程称为一次旅程，其中包含许多情绪和心理成分； (3) 家长讨论听到非诊断结果的感觉，如松了口气、困惑和提出问题孩子的未来。这些发现对于从事自闭症评估服务的专业人员来说非常重要，可以帮助改善家庭的评估过程，尤其是在评估未得出诊断结果的情况下。(2) 家长将评估过程称为一次旅程，其中包含许多情绪和心理成分； (3) 家长讨论听到非诊断结果的感觉，如松了口气、困惑和提出问题孩子的未来。这些发现对于从事自闭症评估服务的专业人员来说非常重要，可以帮助改善家庭的评估过程，尤其是在评估未得出诊断结果的情况下。