The COVID-19 pandemic has had widespread impact on daily life for all of society. Impact on mental health is an area of concern, particularly for children and young people (Holmes et al., 2020). Autistic young people are a highly vulnerable group due to substantially increased rates of mental health difficulties and challenging behaviour (e.g. Simonoff et al., 2008). However, we have limited understanding of how the pandemic is affecting them and their parents/carers. Health professionals will be uncertain of what kinds of interventions are needed. We are surveying a well-characterised cohort to better understand which autistic children and their families are most adversely affected and in what ways.
The study involves a cohort of 249 autistic young people, currently aged 15-19 years (the QUEST cohort) who are part of a longitudinal study examining predictors of mental health outcomes in autistic young people. The QUEST young people were originally assessed at age 4-9 (time 1), then age 11-15 (time 2), and most recently at age 13-17 (time 3). The use of this cohort will allow us to understand the interplay between pre-existing vulnerabilities and the additional stressors of COVID-19 on young people and their parent’s mental health and wellbeing. We already have measurements of autism severity; co-occurring psychiatric diagnosis; IQ; adaptive function; emotional and behavioural problems; parental stress; parental mental health; and parenting style.
We will use a brief parent-report survey developed specifically to explore emotional and behavioural experiences during the pandemic. It will also cover other pandemic-related factors such as experience of infection, and changes in employment, family life and educational experiences. The questionnaire is designed to have parents complete a longer version that includes questions about impact on employment and family circumstances, and then to judge whether it is appropriate for their child to complete a parallel version focussing on the young person’s mental health. This is in line with the previous procedures approved and used in QUEST, given the wide range of intellectual functioning of the participants. The survey has been designed by a consortium of international experts in child mental health. It is being used with clinical populations in 8 countries, including 3,000 children attending mental health services at South London and Maudsley (SLaM) NHS Trust. As the cohort come from the same catchment area as SLaM services, we would be able to compare the results of the survey from these cohorts with those attending SLaM services.
Simonoff, E., Pickles, A., Charman, T., Chandler, S., Loucas, T., & Baird, G. (2008). Psychiatric disorders in children with autism spectrum disorders: Prevalence, comorbidity, and associated factors in a population-derived sample. Journal of the American Academy of Child and Adolescent Psychiatry, 47(8), 921-929. doi:10.1097/CHI.0b013e318179964f
Holmes, E. A., O'Connor, R.,C., Perry, V. H., Tracey, I., Wessely, S., Arseneault, L., . . . Bullmore, E. Multidisciplinary research priorities for the COVID-19 pandemic: A call for action for mental health science. The Lancet Psychiatry, doi:10.1016/S2215-0366(20)30168-1
Dr. Melanie Palmer, Institute of Psychiatry, Psychology & Neuroscience, King's College London
Dr. Susie Chandler, Institute of Psychiatry, Psychology & Neuroscience, King's College London
Prof. Emily Simonoff (budget holder), Institute of Psychiatry, Psychology & Neuroscience, King's College London
Prof. Tony Charman, Institute of Psychiatry, Psychology & Neuroscience, King's College London