Making sense of behaviour/mental health problems in children with ASD
Research type
Research Study
Full title
The Making Sense? study: How do parents and young adults with Autistic Spectrum Disorders make sense of behaviour problems and mental health difficulties?
IRAS ID
164675
Contact name
Bryony Beresford
Contact email
Sponsor organisation
University of York
Duration of Study in the UK
1 years, 5 months, 29 days
Research summary
BACKGROUND: Very little is understood about how individuals with ASD, and/or their parents/carers notice, make sense of, and respond to changes that suggest that their mental health is deteriorating. Yet early intervention typically requires individuals and/or parents/carers to alert services or seek help. Parents of people with ASD report feeling unsure of how to distinguish between ASD behaviours and those which may have a behavioural or mental health origin. This suggests an increased risk of these difficulties remaining unidentified in the early stages when interventions might be most effective and cost-effective.
The study will:
• capture parents' and young adults' accounts of the development of behaviour/mental health problems and experiences of seeking support;
• understand how families can be better supported to distinguish early indicators of these difficulties from ASD behaviours;METHOD: Semi-structured interviews with parents (of young adults 22-24 years; and children 10-14 years) and young adults (22-24 years) with ASD. The sample will be drawn from two existing cohorts. Purposeful sampling will ensure the following are represented: parent/family characteristics; type of ASD; and history of behavioural/mental health problems. Twenty parents will be interviewed from each cohort. Twenty young adults (IQ>70) from the SNAP cohort will also be interviewed.
ANALYSES: Interviews will be audio-recorded and transcribed. We will construct a biographical narrative of each participant’s account of their/their child’s mental health problems, and intervention experiences. Young adult-parent dyad analysis will explore differences and commonalities of accounts. Thematic analyses will allow us to explore how families acknowledge, make sense of mental health problems and their experiences of seeking support.
OUTPUTS: In addition to academic outputs, materials for parents, young people with ASD, ‘front-line’ health, education and social work practitioners on how to distinguish behaviour problems from ASD and normal development and when to seek help will be developed in partnership with the National Autistic Society.
REC name
East Midlands - Leicester Central Research Ethics Committee
REC reference
14/EM/1282
Date of REC Opinion
13 Jan 2015
REC opinion
Further Information Favourable Opinion