Feelings of loss and grief in parents of children diagnosed with autism spectrum disorder (ASD).
Parents of newly diagnosed kids with ASD follow a predictable grief cycle that you can spot and support.
01Research in Context
What this study did
Fernańdez-Alcántara et al. (2016) talked to parents who just learned their child has autism.
They asked open questions about feelings, thoughts, and daily life changes.
The goal was to map the grief parents feel when expectations for their child shift.
What they found
Parents move through clear grief steps: shock, guilt, anger, and slow acceptance.
They describe it as losing the child they expected and meeting a new one.
Support from other parents and clear information help the healing process.
How this fits with other research
Burrows et al. (2018) built on this work by showing grief and distress are different. Grief links to seeing autism as a loss. Distress links to past mental-health issues and child aggression.
Legg et al. (2019) reviewed UK stories and found the same grief pattern, plus fathers feeling left out. The review adds that dads need their own space to talk.
Lawer et al. (2009) tracked parents over time and found anger predicts later depression. Manuel’s grief model shows anger is one normal stage, not a flaw.
Why it matters
When you meet a family after diagnosis, expect grief, not just stress. Label the stage you see and offer matching help: information for shock, parent-to-parent groups for guilt, and space for anger. Check in at later visits; grief can resurface at school transitions or puberty. Validating these feelings lowers parent depression and keeps them engaged in therapy.
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02At a glance
03Original abstract
BACKGROUND: Various 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. AIMS: To analyze in depth the feelings of loss in parents of children diagnosed with autism spectrum disorder. METHOD: A qualitative study was conducted based on grounded theory. Twenty parents participated through purposive sampling. PROCEDURE: Semi-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. RESULTS: The 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. IMPLICATIONS: Feelings of loss play an important role in explaining the complex emotions experienced by these parents. Different intervention strategies are proposed.
Research in developmental disabilities, 2016 · doi:10.1016/j.ridd.2016.05.007