“We were happy to just get an autism diagnosis”: a mixed-methods study of parents’ experience with the autism assessment protocol

Abstract

Purpose – Despite increasing autism prevalence, delays in diagnostic assessments persist, likely impeding access to effective early interventions. In 2022, Ireland’s Health Service Executive piloted new, three-tiered Autism Assessment and Pathways Protocol in the Republic of Ireland. Design/methodology/approach – An online survey was completed by six parents of autistic children assessed through the novel, Tier 1 Assessment Pathway Protocol, and 25 parents of autistic children assessed through the standard Assessment of Need Pathway participated in this study. All respondents provided quantitative and qualitative data on their experience of the diagnostic assessment pathway, including satisfaction, self-reported stress and perceived child stress. Parental satisfaction and stress were compared between pathways. Findings – Some 65% of parents were satisfied with the diagnostic process overall. The process was stressful for both parents and children. There were no significant differences in parents’ satisfaction, stress levels or participant characteristics between the diagnostic assessment pathways. Time to assessment displayed negative correlations with parents’ satisfaction with the overall diagnostic process and self-reported stress. Four themes were identified: falling through the cracks, accessing effective supports, the emotional and psychological impact of the assessment experience and being seen, heard and understood. Research limitations/implications – Parents’ experiences did not differ between the pathways, suggesting the viability of the Assessment Protocol Tier 1 pathway. Reducing waiting times and increasing post-diagnostic support to facilitate early intervention should be emphasised. Originality/value – To the best of the authors’ knowledge, this mixed-methods study was the first to explore parents’ experience and satisfaction with Tier 1 of this protocol.