I grew up with two brothers diagnosed with autism. This made home-life better in so many ways and difficult in others. My experience with my brothers inspired my PhD research aimed to understand how autistic people viewed and processed the world around them.
Throughout my academic career, I have been privileged to work with amazing children and their families all with their unique strengths and struggles. Some children had different neurodevelopmental disorders with associated intellectual disabilities, which gave rise to very different skills sets and support needs within each child. When Covid-19 hit and restrictions were strictly implemented I began to think (and worry) about these families and about how they might be coping.
Research shows that challenging behaviours indicate levels of severe mental stress and distress reactions in those with intellectual disabilities (Courtney & Perara, 2020). These behaviours are exacerbated by disruption to day-to-day routines (adaptive functioning), or restrictions on enjoyed activities (Borthwick-Duffy, 1994; NICE guidelines – NG11; published May, 2015). The Covid-19 pandemic and related limitations to routine and lockdown arrangements (Anderson et al., 2020) are all likely to trigger or exacerbate these factors. In addition, greater distress is reported in families who perceive greater caregiver burden and limited social support (Dunn et al., 2001; Gallagher, et al., 2008). Therefore the reduced clinical services, respite and social support during the lockdown measures would have been particularly detrimental to the parent’s mental health.
For this reason, I carried out survey-based research to better understand how children with intellectual disabilities and their families were coping during COVID-19 restrictions. We found the following:
- Parents of children with Neurodevelopmental Disorders (ND) and Intellectual Disabilities (ID) were put under significant pressure as a result of public health measures taken to reduce the spread of the Covid-19 virus;
- Parents of children with ND and ID are more vulnerable to mental health difficulties compared with carers of typically developing children;
- Emerging research evidence tells us how lockdown restrictions to education, respite and support services (all factors that are known to reduce caregiver stress) impacted both the carer coping strategies and children’s challenging behaviours;
- Carers of children with ND and ID reported a sense of feeling unsupported and forgotten during the pandemic and lockdown – they highlighted a perceived absence of support from social, health and education services. There was a general feeling that they have been left on their own to meet complex educational, sensory-related, medical and social care needs;
- Lack of service provision, respite and school infrastructure during restrictions caused increased children’s challenging behaviours and caregiver psychological distress.
Colleagues and I were recently awarded a grant from the Economic & Social Research Council (ESRC) as part of UK Research & Innovation’s rapid response to Covid-19 to carry on collecting this data with the survey. In addition, we also aim to capture the voice of children with ND and ID themselves and their parents to better understand what they have found helpful or difficult, as well as the support they still need, throughout the transition back to ‘normal’.
This research will be crucial since it will address several important questions raised during the pandemic and recovery phases, such as:
- What did children with intellectual disabilities and their caregivers struggle with most during the pandemic?
- What did they find particularly easy during the pandemic?
- What lessons should be learned from the recent worldwide events to better protect these vulnerable groups?
- What aspects of the recovery phases are positive or negative?
- Are there still ways in which they need further support to better recover from the Covid-19 pandemic?
Our research aims to answer these questions and help highlight the real issues facing these vulnerable groups in their own words. We plan to share findings when further information becomes available.
About the writer
Dr Karri Gillespie-Smith (Lecturer based in Clinical Psychology, University of Edinburgh) is an expert in developmental psychology and is currently carrying out a UK wide survey (started May 2020), which explores the impact of Covid-19 restrictions on families. The research team have recently been awarded a grant by the Economic & Social Research Council (ESRC) as part of UK Research & Innovation’s rapid response to Covid-19.