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.

Parent Testimonial:

“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.”

New General Data Protection Regulations (GDPR) come into effect on 25 May 2018. We want to update you about what the QUEST Study, conducted at King’s College London, are doing to keep your personal information safe.

The QUEST Study will only use your personal data when the law allows us to. Previously the legal basis by which we held and processed your data was that you had given us consent to do so. We will continue to seek your consent and you will still have the option to withdraw your participation and your personal data from the study in the future. However we have declared that the legal basis for holding and processing data on the QUEST study will be because it is necessary for the performance of a public task carried out in the public interest.  QUEST is a longitudinal research cohort which is of great scientific value in terms of long-term follow-up.  King’s College London, sponsor of the QUEST research activities, is an internationally-renowned university, one of whose aims is to undertake academic research. Therefore processing of this data is necessary for the purposes of performing the public tasks of the university.

If you are happy to remain involved in our research cohort you do not need to reply to this message. If you have any questions regarding how we manage and process your data please contact us on 0207 848 0320.

Click here for QUEST Newsletter_Issue 6_2019_Winter

Click here for QUEST Newsletter_issue_5_for_families_seen

Click here for QUEST Newsletter_issue_5_for_families_who_completed_questionnaires

Click here for QUEST Newsletter_Issue 4_2017_Winter

Click here for QUEST Newsletter Issue 3 2016 Winter

To find out what taking part would involve click on one of the videos below:

Katie’s research day

Zack’s research day