Grief Support for Children with Intellectual Disabilities and Autism Spectrum Disorder : A Systematic Literature Review

Abstract: Children with intellectual disabilities and autism spectrum disorder are in danger of developing serious mental health issues after the death of a beloved person. They are considered as not being able to grieve and understand the concept of death, which leads to exclusion from grieving processes and rituals. This increases the risk of negative grief outcomes. Deficits in understanding, communication and interpersonal relationships make them especially vulnerable after the loss. Grief support from the social environment or professional grief interventions can have a positive impact on the grieving process and outcome. This systematic literature review aimed to identify grief support for this target group, including social and professional support. Additionally, grief reactions of children with intellectual disability and autism spectrum disorder were examined to identify how the need for support can be recognized. Seven databases were used for the search process and six studies met the predefined inclusion and exclusion criteria. It was found that the grief reaction of children with intellectual disabilities and autism spectrum disorder was similar to normal developing children, although some group-specific variations were recognized. The content of provided grief support included education and discussions about death and emotions, participation in death rituals and preparation for it, as well as family support. Books and stories were found to be successful tools for explaining emotions and coping strategies. Due to the limited data available no solid information can be given about the possibility of continuous and effective grief support for this target group. A research gap was identified regarding the grief experience of children with intellectual disabilities and autism spectrum disorder and available grief support for this target group.