Factors influencing the mental health of autistic children and teenagers: Parents’ observations and experiences

Abstract

The high prevalence of mental health and behaviour problems among autistic children and adults is an issue of concern to the autism community. Many studies have been undertaken to identify the factors that protect against/or increase the risk of such difficulties. However, this research is dominated by quantitative observational studies. In this study, we sought to investigate the same issue using a qualitative research approach, positioning parents as experts and eliciting their theories as to what influenced their child’s mental health from diagnosis to the late teenage years. In-depth interviews were undertaken with 33 parents (30 mothers, 3 fathers) of 31 autistic teenagers (21 males, 10 females) aged between 15 and 19 years (median 17 years) purposively sampled from an existing cohort (QUEST). Parents believed a wide range of child-centred, developmental and socio-environmental factors had played a role in their child’s mental health, alongside life events involving loss and separation. A number of these factors have received little or no research attention to date (e.g. aspects of the school environment). The findings have important implications, highlighting factors that should be given priority in future research, as well as interventions needed to support the mental health of autistic teenagers. Lay abstract Autistic people are more likely to experience mental health difficulties compared to neurotypical people. It is very important that we understand what increases the risk for mental health difficulties, and what helps to protect against them. So far, research on this for children and young people has only investigated a small number of factors and these have been chosen by researchers and clinicians. This study took a different approach in which parents’ expertise in their children was recognised. Parents were asked to tell the story of their autistic teenagers’ mental health from diagnosis in early childhood through to the present, and to explain the ‘theories’ they developed about what affected their child’s mental health – positively and negatively – and how. Parents believed a wide range of factors played a role. These include: (1) aspects of their child (e.g. their autistic traits, intelligence); (2) aspects of their surroundings (e.g. the efforts parents make to prevent and respond to their child’s difficulties, features of the school they attend, availability of social activities); (3) changes their child experienced growing up (e.g. puberty, awareness of being autistic); and (4) life events involving loss and separation. Many of the factors parents identified as important have received little or no research attention to date. The findings suggest issues that should be considered in future research and reveal ways that support for parents and autistic children and teenagers can be improved.