Ties of silence - Family lived experience of selective mutism in identical twins

This article is based on an in-depth interview with a pair of twins diagnosed with selective mutism and their parents 2years after recovery. Selective mutism (SM) is a rare disorder, and identical twins sharing the condition are extremely rare. The twins developed SM simultaneously during their first year of school. The treatment and follow-up they received for several years are briefly described in this article. The interview explored the children's and their parents' narratives about the origin of the condition, the challenges it entailed in their daily lives, and what they found helpful in the treatment they were offered. In the interview, the children conveyed experiences that even the parents were unaware of and revealed examples of daily life-traumas for which they were unable to obtain support and help. The whole family was trapped in the silence. The twins and their parents emphasized different aspects in terms of what they believed were helpful. The implications of these findings for our understanding and treatment of children with SM are discussed, as well as the potential of service user involvement in child and adolescent mental health research.