Feelings of loss and grief in parents of children diagnosed with autism spectrum disorder (ASD)

•Parents of children with ASD experience strong feelings of grief.•Reception of the diagnosis is associated with the loss of the child that they had up to this time.•The parents must make a major effort to come to terms with feelings of loss.•Emotional work with the parents is necessary to deal with these feelings.

BackgroundVarious authors have reported feelings of loss and grief in parents of children with autism spectrum disorder. However, no previous studies have investigated the structure of these feelings.AimsTo analyze in depth the feelings of loss in parents of children diagnosed with autism spectrum disorder.MethodA qualitative study was conducted based on grounded theory. Twenty parents participated through purposive sampling.ProcedureSemi-structured interviews were conducted, asking about different emotional aspects of the upbringing of a child with autism spectrum disorder. Atlas.ti 6.2 program was used for open, axial, and selective coding.ResultsThe core category that explained the feelings of these parents was unexpected child loss, associated with shock, negation, fear, guilt, anger, and/or sadness. Two processes were identified, one associated with the resolution of grief and the other with obstacles to overcoming it.ImplicationsFeelings of loss play an important role in explaining the complex emotions experienced by these parents. Different intervention strategies are proposed.