Parents’ multi-layered expectations when requesting an Autism Spectrum Disorder assessment of their young child: an in-depth interview study

Abstract

Background Parents are valued stakeholders in research, clinical practice and policy development concerning autism spectrum disorder (ASD). However, little is known about what drives and moves parents besides their obvious worries and help request when they ask for a diagnostic ASD assessment of their child. Methods Seventeen Flemish parents of 11 young children participated in a longitudinal study consisting of three in-depth interviews before and after their child’s diagnostic ASD assessment. Data were analysed in Nvivo 11 according to the procedures of Interpretative Phenomenological Analysis. Results In this paper we report the results of the first series of interviews which were conducted after parents had asked for an ASD assessment of their young child, and before this assessment started. The pre-assessment experiences of the parents were dominated by the anticipation of various implications of an ASD diagnosis, comprising both positive and negative expectations. The theme of positive expectations consisted of two equally prominent subthemes: treatment-related implications but also expectations pertaining to their psychological and relational experiences. Conclusions This study suggests important issues for clinicians to bear in mind during a consultation with parents who request an ASD assessment of their young child. We argue that attending to and communicating about parents’ expectations prior to their child’s ASD assessment may help clinicians to better understand parents’ requests for help, and to address their needs more effectively.

Parenting confidence and social support as predictors of coping strategies in parents of children newly diagnosed with autism spectrum disorder: A cross‐sectional study

“…Consistent with previous research (Kiami & Goodgold, 2017; Pepperell et al, 2018), this study found that parents used more active strategies to cope with an ASD diagnosis, with trying to find the positive side being the most typically used strategy. For many parents undergoing the diagnostic process, the primary concern is a diagnosis, wishing to understand and gain certainty about what is going on with their children (Jacobs et al, 2020a). During the postdiagnosis period, parents who have resolved reactions to the diagnosis can adapt to their child's condition, understand the demands placed on their parenthood and perceive positive aspects of ASD (Reed & Osborne, 2019).…”

Examining Language, Speech and Behaviour Characteristics: A Cross-Sectional Study in Saudi Arabia Using the Arabic Version of Gilliam Autism Rating Scale-Third Edition

“…Such complexity has not inhibited substantial advancements in this field. On the contrary, the critical need for increased awareness, comprehensive screening, and early intervention is a recurrent theme in the literature, driving significant progress in the field [5][6][7][8][9]. Research has consistently demonstrated that early detection can profoundly reduce distress, preserve cognitive function, and enhance the quality of life and independence for individuals with ASD who engage in intervention programs.…”