Understanding Ambiguous Loss in Parents of Children with Autism Spectrum Disorder

Abstract

A diagnosis of autism spectrum disorder (ASD) can be challenging in many ways. Often, research focuses on financial and other developmental challenges. In this study, we aimed to learn about the complex experiences of parents when they receive a diagnosis of ASD for their children. This research can aid in parents’ process of understanding their own feelings and what their child’s diagnosis means for the family.

We sought to understand parents’ views on:

1.            Signs of ambiguous loss (AL) in families with children diagnosed with ASD.

2.            Other challenges families face.

3.            Helpful resources and support for families dealing with AL.

We did a qualitative study using semi-structured interviews with eight parents. Through an explication process, we developed themes and subthemes from the transcribed interviews. The results showed that parents face issues like emotional highs and lows, uncertain outcomes, and challenging relationships. Many participants shared positive experiences with supportive services. Parents need more support, and children with ASD need extra resources.

Keywords: Autism Spectrum Disorder, Ambiguous loss, Families of autistic children, Educational Partners, Support Services.

DOI: 10.7176/JHMN/119-07

Publication date: July 30th 2025