Parent perspectives of children with selective mutism and co-occurring autism

Abstract

Selective mutism (SM) and autism frequently co-occur together, exacerbating social communication deficits and associated anxiety. However, professionals’ have lacked a readiness to diagnose SM and autism together, making the need to understand parental experiences of caring for a child with SM and autism crucial. The current study utilised Interpretative Phenomenological Analysis (IPA) to explore parents’ experience of caring for children with SM and autism. Semi-structured interviews were conducted with eleven mothers and one father of children aged between 5 and 18 years. All children were diagnosed with SM and had undertaken, or were currently undertaking, an autism diagnostic process. Analysis of the transcripts resulted in the following themes: Complexities from co-occurring issues; The overwhelming impact of SM; The diagnostic journey; Finding solutions and advocacy. Judgements and minimisation of symptoms from educational and healthcare systems exacerbated delays in diagnosis preventing appropriate intervention. The complexities of caring for a child with SM and autism, alongside wider misunderstandings, exacerbated parental stress, impacting the family. Parental advocacy and safe environments provided opportunities for children to better manage contextually based mutism. Improvements in identification and compassionate understanding from wider systems by involving parents as key stakeholders are essential to improve this situation.