WP3 Predictors Summary (QUEST Follow-Up)
In 2008 our team recruited 277 families from two London health districts (Lewisham and Bromley) with children aged 4-8 years diagnosed with autism spectrum disorder (ASD). This study is one of the largest studies of emotional and behavioural difficulties for children with ASD. We asked parents to complete some questionnaires and interviews and obtained a really detailed picture of how their child was developing, of their behavioural and emotional wellbeing and of how things were going for the parents. We also went to the child’s school and completed some cognitive assessments with him/her, and asked his/her teacher to complete a questionnaire on the child’s behaviour.
The vast majority of the families we met told us that their child was experiencing emotional and behavioural difficulties, including hyperactivity and inattention, fears and worries, oppositional behaviour, sleep problems, sensory problems and self-injury.
Other studies tell us that these problems are indeed very common in children with ASD. However, we still don’t know why a minority of children with ASD might develop more severe problems later on, problems that can make it very difficult for their families and their schools and can affect their participation in community activities. We want to understand more about which factors can affect how children develop into middle childhood and adolescence.
For these reasons, the current study aims to follow-up all the children now they are aged 10 to 14 to see how they are getting on. We will be looking at the children’s communication, how they get on with adults and other children, their play and interests, and their behaviour and emotional wellbeing. We are also interested in how they are doing at school. We are interested in parents’ perceptions of family life, the services families have accessed recently and how confident and optimistic families feel.
This study will help us understand how these behaviours persist or escalate from childhood to adolescence and will inform future personalised interventions to target those at greatest risk. It will help us understand how ASD affects a child as they grow older and the impact this has on family life. We will have a clearer picture of the need for services and whether families are accessing those services. The findings will potentially affect the way intervention for emotional and behavioural difficulties in children with ASD is organised and methods of supporting families as their children grow older.
“Being involved in this study has been very empowering for both my child and I. Although he was anxious about attending the day he enjoyed it, they were very good with him. For me the process has allowed me to see how important I am in my child’s success. Somehow quite subtly the experience rewarded all my hard work with him. It’s amazing how a couple of exercises together can do that. A useful outcome was the information I received about my child. I pursued some new understanding and have developed a follow up plan which before attending the study I was unaware that he needed, but it will make a difference to supporting his future education. A great experience with loving researchers.”
To find out what taking part would involve click on one of the videos below:
Katie’s research day
Zack’s research day