Jacobs D, Steyaert J, Dierickx K, Hens K
Tijdschr Psychiatr. 2020;62(12):1059-1066.
BACKGROUND After decades of research and clinical experience, autism spectrum disorder (ASD) turns out to be heterogeneous in every sense, including phenotype and etiology. How is this heterogeneous view translated in information that is useful and significant to parents and clinicians?
AIM: To formulate recommendations with regard to clinical ASD care in young children.
METHOD: We conducted in-depth interviews on how parents (11 mothers and 6 fathers of 11 children) and physicians (n = 16) view and experience a young child's ASD diagnosis. The interviews were analysed in Nvivo 11 according to the guidelines of interpretative phenomenological analysis.
RESULTS: The interviewed parents and physicians addressed psycho-relational implications of an ASD diagnosis as much as treatment-oriented implications. Twelve months after their child got an ASD diagnosis, some disappointment regarding these implications led parents to a pragmatic understanding of an ASD diagnosis.
CONCLUSION: Our results may be useful to both clinicians and policy makers with regard to clinical ASD care in young children. An ASD diagnosis in itself may be of limited help to parents and clinicians but can be of use if it is embedded in a request-oriented diagnostic process guided by a communication model of shared decision making and aimed at elaborating a treatment-oriented profile of the child.
经过数十年的研究和临床经验，事实证明，自闭症谱系障碍（ASD）在各个方面都是异质性的，包括表型和病因。这种异质性观点如何转化为对家长和临床医生有用且重要的信息呢？
制定关于幼儿自闭症谱系障碍临床护理的建议。
我们就家长（11名儿童的11位母亲和6位父亲）和医生（n = 16）如何看待和体验幼儿自闭症谱系障碍诊断进行了深入访谈。根据解释现象学分析的指导方针，在Nvivo 11中对访谈进行了分析。
接受访谈的家长和医生既谈到了自闭症谱系障碍诊断在心理关系方面的影响，也谈到了以治疗为导向的影响。在孩子被诊断为自闭症谱系障碍12个月后，家长们对这些影响的一些失望使他们对自闭症谱系障碍诊断有了务实的认识。
我们的结果可能对临床医生和政策制定者在幼儿自闭症谱系障碍临床护理方面都有用。自闭症谱系障碍诊断本身对家长和临床医生可能帮助有限，但如果将其嵌入以需求为导向的诊断过程中，该过程以共同决策的沟通模式为指导，旨在详细制定孩子以治疗为导向的概况，那么它可能会发挥作用。
