Parental Perceptions of a Pre School Diagnostic Pathway for Autsim

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Abstract

ABSTRACTThere is a recognition that services for people with autism and their families need to improve. Although a number of good practice documents and clinical guidance have been published there is continued concern that services are still not providing optimum support. Despite many of the documents focussing upon the diagnostic procedures there is little information available on the quality of the diagnostic process from the parents’ perspective.This qualitative study aims to explore parents’ perceptions of a diagnostic pathway for pre-school children, with autism, in a Local Authority in the North West of England. It considers the factors which, parents perceive, contribute to the success of the local pathway and aims to identify any areas of unmet need for the parents and their families. It also investigates what, if any, feelings of grief and loss are experienced by the parents when their children are diagnosed with autism. It seeks to determine whether the existing pathway supports parents through feelings of grief and loss which may accompany a diagnosis. An interpretivist paradigm was adopted. Eight semi structured interviews were conducted with an opportunity sample of parents drawn from the Multi Agency Autism Team’s database. The interviews were recorded and transcribed and a thematic analysis was made of the data.Two core themes, Knowledge and Loss, emerged from the data which conceptualised the parent’s perception of the diagnostic process. Both of the themes contained sub themes: Knowledge - acquisition of knowledge: communication of knowledge: and quality of knowledge Loss - feelings of grief and loss: being supported through loss: and loss of normal familyThe results of the research are discussed within the context of the existing literature and illustrated with pertinent quotations made by the parents. The findings are supportive of previous research that the diagnosis of autism is a complex and emotionally challenging experience. The results suggest that communication with professionals, the manner in which the diagnosis is disclosed and the support available to families, are pivotal factors in the local pathway. The personal attributes of the professionals who support families, for example, ability to be flexible and have empathy, were more important to the sample than their knowledge of autism. Parents identified areas of unmet need in the existing pathway including having a clear understanding of the possible outcome of their child’s assessment, being provided with information about autism and access to post diagnostic support. The entire sample reported feelings of grief and loss when their child was diagnosed with autism. Their descriptions of these feelings suggest that they experience an ambiguous loss. The implications of the findings for practice are discussed and areas for future research are suggested in response to the findings.

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