‘Adolescence kicked in . . . and you need help again’: A qualitative study of the experiences of parents of autistic teenagers with mental health difficulties or behaviours that challenge

Relatively little is known about the experiences of parents of autistic teenagers, with the existing research on this life stage principally about transition. This study sought to address this gap. It focused specifically on parents of autistic teenagers with mental health difficulties and/or behaviours that challenge (MHD/BC). The study design was qualitative and used in-depth interviews to collect data. Thirty-three parents of 31 teenagers (15-19 years) living in the United Kingdom were purposively sampled and recruited from an existing research cohort. A thematic analysis was undertaken, adopting the framework method. Parents typically reported the emergence of new MHD/BC, or existing difficulties becoming more severe, during the teenage years. At the same time, they described feeling de-skilled and uncertain about how best to support their child. Many parents also referred to deteriorations in their own physical and emotional health. Very few had accessed beneficial professional support during this period. Findings add weight to the case for increasing support to parents of autistic teenagers, and the need to work preventatively to reduce the risks of MHD/BC emerging or increasing in severity during the teenage years.Lay abstractBeing a teenager can be challenging for any young person, and it is during this stage of life that most mental health difficulties (MHDs) emerge. The teenage years can be even more demanding for autistic young people who are known to experience more emotional distress and MHDs than their neurotypical peers. Parents are an important source of support for most children and young people, including those who are autistic. It therefore surprising that there is very little research on the experiences of parents of autistic teenagers. Most of the research that has been carried out is specifically about leaving school or moving from children's to adult services. The purpose of this research was to understand the experiences of parents of an autistic teenager with mental health difficulties or behaviours that challenge (MHD/BC). We interviewed 33 parents of 31 teenagers aged between 15 and 19 years. Most parents said their child experienced new or more severe MHD/BC during their teenage years. This was upsetting to witness and caused them a lot of worry. Many described not knowing how best to respond. Others said that their efforts to support their child were unsuccessful. The difficulties parents experienced had an impact on their day-to-day lives and many said their own physical and emotional health had worsened as a result. Very few parents had received help from mental health or social services. The findings highlight the importance of supporting parents of autistic teenagers, including intervening to support autistic teenagers.