Caregiver experiences of Autistic Spectrum Disorder assessments within a community CAMHS setting: an IPA study

Objectives: With existing literature focused on family experiences of Autistic Spectrum Disorder (ASD) assessments as a singular event, there is little systematic exploration of the experiences of ASD assessments when undertaken within an integrated CAMHS setting, despite its widespread practice. This study aimed to develop an understanding of how the ASD assessment process is integrated and experienced by families that are already utilising CAMHS. Design: As the objectives were exploratory and based on developing an understanding of a discreet experience in an area without extensive existing literature, a qualitative design was employed utilising Interpretative Phenomenological Analysis. Method: From an open recruitment strategy for families who had received an ASD assessment within CAMHS, three caregivers agreed to take part; all had received a 'non-diagnosis' for their young person. All were interviewed with a semi-structured schedule to understand their experiences of the assessment process. Results: Findings are focused on exploring the superordinate theme "Hurdles and Holes". Three sub-themes emerged from the data analysis; "Another hurdle", "Dropped into a black hole" and "Post-feedback barriers". Conclusions: Participants experienced the ASD assessment as a modular process and described the assessment as disjointed from the ongoing support received from CAMHS. All were dissatisfied from feeling unable to determine the cause of their young person's psychological distress, and considered the ASD assessment process as an inhibitor rather than enabling future support. Findings indicate that CAMHS should consider how the ASD assessment may be influencing clinician engagement, and work to better integrate this process within the wider service.