"The land of unknown" : mothers waiting for their child's autism assessment

The majority of research in this field focuses on the diagnosis of Autism and parents’ satisfaction with the diagnostic process, with a relatively small contribution from pre-diagnostic experience of parents. Of the studies exploring this, many have used retrospective data (Ryan & Salisbury, 2012; Braiden, Bothwell & Duffy, 2010) leaving a limited understanding of parental experience while waiting for a diagnosis. The study aimed to explore the experiences of mothers waiting for their child’s assessment of Autism and a sample of mothers with a child on the waiting list were recruited. Semi-structured interviews of 6 mothers were conducted and Interpretative Phenomenological Analysis (IPA) was used to analyse transcripts. Three master themes were highlighted; Developing an understanding of the child, The suffering parent and Focusing on the future. Other themes conveyed the importance of having a shared formulation of the child between home and school, the impact of waiting on the mothers’ mental health, and feeling uncertain and stuck in their current predicament, due to the lengthy waits of Autism assessments. The study provides a deep and valuable insight into parental experiences during this stressful period, with the added complication of parenting a child with additional needs. This provides implications for how the parents cope and the knock-on effect on the family system and the child