Silenced grief: living with the death of a child with intellectual disabilities.
Parents of adults with ID get abandoned right after death—schedule two simple follow-ups and you break the silence.
01Research in Context
What this study did
One researcher talked with the mothers and the fathers whose adult son or daughter with intellectual disability had died. The chats lasted one to two hours and were taped.
Parents told stories about the death, the funeral, and the years that followed. The study looked for common feelings and events.
What they found
Every parent said their grief felt 'silenced.' Services pulled away right after the funeral. Friends stopped asking. The pain was ignored.
Mothers spoke of 'empty arms.' Fathers felt they had to 'stay strong.' Both said they had no place to talk about the loss.
How this fits with other research
Kruithof et al. (2022) asked similar parents to look ahead. Those parents wanted to lead end-of-life choices for their still-living adult children. Todd (2007) shows what happens when those same parents are left alone after death.
Schertz et al. (2016) reviewed nine studies and found parents want shared decisions before death. The 2007 paper reveals the follow-up gap: once the child dies, the shared team vanishes.
Black et al. (2022) tested a 10-week horse-and-talk parent group. Parents felt heard and lifted. Todd (2007) had no group at all—just silence—proving the need for exactly that kind of support.
Why it matters
If you serve adults with ID, plan for the parent after death. Add one check-in at three months and one at twelve. A 15-minute call or a coffee visit gives the parent a place to speak. That tiny step moves grief from disenfranchised to supported.
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02At a glance
03Original abstract
BACKGROUND: This paper examines the bereavement experiences of parents of people with intellectual disabilities (IDs). It is based upon an understanding that there exists little research-based understanding of those experiences or of the support needs of parents after the death of their child. METHODS: In-depth interviews were held with 13 parents on the deaths of their children with IDs. RESULTS: The data highlighted the deep sense of loss that these parents experience after the death of their child. The loss was intensely felt. They also show that their loss was a form of compounded loss. To begin with the scale and depth of loss is misrecognized. They also lose contact with a world that they had previously been heavily involved in. There was a sense that ID services and professionals withdrew from the family with too much haste. The data reveal that there exists no adequate supportive emotional community for these parents to express their grief. CONCLUSIONS: It is argued that the experiences of these parents have much in common with understandings of disenfranchised grief. The implications of these findings for research and practice are briefly discussed.
Journal of intellectual disability research : JIDR, 2007 · doi:10.1111/j.1365-2788.2007.00949.x