The untold perspective: Parents’ experiences of the autism spectrum disorder assessment process when the child did not receive a diagnosis

Abstract

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.