“You’ve actually got two patients, you haven’t got one”: parent-informed criteria for evaluating the autism assessment process

Abstract

Purpose: Parents whose children have undergone an autism assessment often describe the process as extremely stressful. This affects how parents engage with services post-diagnosis, meaning less likelihood of using subsequent service support despite struggling to cope. Since parents already report many barriers to accessing services, e.g. long waiting lists, lack of co-ordination and limited resources (Sapiets et al. 2023), negative experiences during assessment should not pose another potential barrier to engagement. This study aimed to address how families’ needs can be better met during the assessment process. Design/methodology/approach: In this qualitative study, the author conducted semi-structured interviews with 11 parents whose child had undergone an autism assessment in the last five years. Thematic analysis determined key themes. Findings: The six themes were: clarity and communication, access to support and resources, aftercare, recognition of parent concerns, personalisation of the assessment process and concerns around the use of personal protective equipment/online assessments. These themes led to criteria to assess the quality of autism assessment services in line with parent perspectives. Practical implications: These parent-informed criteria could facilitate the consideration of parents’ views into service evaluations of autism assessment services across the UK. Originality/value: Previous research indicates that the autism assessment experience is often extremely stressful and overwhelming for families (Crane et al., 2016). Despite this, guidance to improve autism services rarely prioritises the opinions and experiences of service-users and their families. The criteria presented here were derived from themes identified by interviewing parents on their experiences of the autism assessment process, thus shifting the focus onto service-users.