The Making Sense? study: How do parents and young adults with Autistic Spectrum Disorders make sense of behaviour problems and mental health difficulties?

SPRU research team

• Professor Bryony Beresford (Principal Investigator)
• Dr Edmund Coleman-Fountain

External collaborators

• Professor Emily Simonoff, Institute of Psychiatry, Kings College London
• Professor Gillian Baird, Guys and St Thomas’ NHS Foundation Trust
• National Autistic Society

Project summary

For many people with autism, the greatest impact on their lives comes not from the core autism characteristics, but rather from commonly co-occurring mental health problems such as anxiety, depression and behaviour difficulties. However, little is understood about how parents of children with autism, and young people and young adults themselves, make sense of and/or respond to mental health difficulties.  Early intervention typically relies on individuals or parents recognising and seeking help with mental health problems. This suggests that there is an increased risk of potentially treatable mental health problems remaining unidentified and unsupported. To begin to address this barrier to accessing services and support, greater understanding is needed of how young adults with ASD, and parents of children with ASD, understand mental health within the context of a diagnosis of autism and their responses to such difficulties.

The Making Sense? Study is part a programme of work funded by the National Institute of Health Research entitled: Improving the outcomes for people with autism spectrum disorders by reducing mental health problems (IAMHealth).

The programme is led by Professor Emily Simonoff at the Institute of Psychiatry, King’s College London. 

The aims of the study are:

• to capture parents' and young adults' accounts, and understandings of, the development of behaviour/mental health problems, and experiences of seeking support
• to improve understanding of how families can be better supported to distinguish early indicators of mental health difficulties from ASD behaviours

In-depth interviews will be conducted with a purposefully selected sample of young adults (22-24 years) with ASC and clinically recognised mental health difficulties, and parents of young adults and children (10 -14 years)with ASC and mental difficulties.  

Alongside academic outputs, the study will contribute to the development of information resources for parents, young adults and practitioners which will support early identification of mental health difficulties. These materials will be developed in partnership with the National Autistic Society.  The team are being closely advised by a group of young adults with ASC and experience of mental health difficulties and a group of parents of children and young adults with ASD and mental health problems.

Additional information