Grief among parents of children with autism spectrum disorders: a systematic review

Abstract

Objectives

Bringing up a youngster with Autism Spectrum Disorders (ASD) is a multifaceted issue with major changes in family dynamics. Parents experience great distress and feel anxious or sad throughout the diagnostic process and the time after the diagnosis. There are very few studies on the aspect of grief in parents of children with ASD. Hence an attempt was made to do a systematic review of the available literature to assess the prevalence and pattern of grief among parents of children with autism spectrum disorder.

Methods

A systematic review of available literature was done up to November 2021. The data was extracted from the literature by two independent observers and any conflict was resolved by a third person.

Results

The two predominant disorders seen in these parents are grief and distress. The emotions usually described are the sense of loss leading to pain, parental expectations being put into peril, shock, turmoil, and a feeling of helplessness in family members after hearing the diagnosis.

Conclusions

A literature search has revealed a huge lacuna in studies related to the feelings of grief experienced by the caregivers of autistic children. Emotional stability and coping of the parents are highly essential not only for the rehabilitation of the child but also to make an improvement in the quality of life of the parents. The primary caregivers of children in the spectrum suffer very powerful and incessant emotions of sadness and grief. The feelings of mothers and fathers of children with autism from recent studies include an unexpected sense of losing a child along with shock, denial, fearfulness, guilt, rage, and/or sorrow. Two most common affective reactions of these parents were grief (“chronic sorrow” or “nonfinite grief”) and distress. The maternal experience of grief was found to be more especially in children with recent diagnoses of autism.

Keywords:

• Autism
• grief
• parents

Authors’ contributions

DB: Conceptualization of the topic, systematic review, preparation, and finalization of the manuscript. LS: Systematic review, preparation, and finalization of the manuscript. BG: Systematic review, review, and finalization of the manuscript.

Consent for publication

Not applicable since it is a review.

Disclosure statement

On behalf of all authors, the corresponding author states that there is no conflict of interest.

Ethical approval statement

Ethics approval and consent to participate: Clearance was obtained from the Institutional Ethical Committee: File no 05/CDC/2018.

Data availability statement

The relevant articles have been obtained from the internet and can be provided on request.