Coping & Caregiving
Stress and Mental Health Concerns in Caregivers
Caregivers of autistic children tend to have more stress and problems than families of typically developing children as well as children with other difficulties including Down syndrome, cerebral palsy, and intellectual disability (1). This may reflect the difficult behavioural profiles of many children and youth with autism, involving self-injury, challenging behaviours, or complex rituals, which can be difficult to manage and interfere with the daily lives of the entire family (2). Disruptive behaviours, fixed schedules/routines, and the demands of daily life may also make it difficult for families to participate in activities outside the home (3,4). Financial difficulties in families also arise, as having a child with a developmental disability is associated with higher rates of work loss and medical costs (5). Researchers have identified higher incidence of caregiver depression and anxiety (6,7), less overall caregiver well-being (8), and more general life stress and daily hassles in caregivers of children with autism when compared to control groups (9).Stress and Mental Health Concerns in Autistic Children and Youth
Children and youth with autism are also at a heightened risk for experiencing co-occurring mental health issues compared to the general population (10). In clinical settings, anxiety-related concerns are among the most common presenting problems for autistic children and youth (11), with the prevalence of anxiety disorders in this population being approximately 40% (12). The phenomenology of anxiety in autism appears to be somewhat associated with autistic characteristics, including sensory processing difficulties (13,14) restricted and repetitive behaviours (15), and impairments in social functioning and peer relationships (16).The Impact of COVID-19
This is a stressful time for everyone, and especially for individuals with autism and their families. This is due to a disruption in routine, heightened mental health concerns, a decrease in feelings of control, financial difficulties, and a loss of supports and services that families would have otherwise been accessing (e.g., therapies, respite, counselling, support groups and other social networks). It is likely that the current environment of uncertainty, as well as significant changes in daily life have exacerbated behavioural and emotional issues in children with autism, and further contribute to caregiver stress.1.
Hayes, S.A. & Watson, S.L. (2012). The impact of parenting stress: A meta-analysis of studies comparing the experience of parenting stress in parents of children with and without autism spectrum disorder. Journal of Autism and Developmental Disorders, 43, 629-642.2.
Lee, L., Harrington, R.A., Louie, B.B., & Newschaffer, C.J. (2007). Children with autism: Quality of life and parental concerns. Journal of Autism and Developmental Disorders, 38, 1147-1160.3.
Bouma, R. & Schweitzer, R. (1990). The impact of chronic childhood illness on family stress: A comparison between autism and cystic fibrosis. Journal of Clinical Psychology, 46(6), 722-730.4.
Fox, L., Vaughn, B.J., Wyatte, M.L., & Dunlap, G. (2002). ‘We can’t expect people to understand’: Family perspectives on problem behaviour. Exceptional Children, 68(4), 437-450.5.
Hecimovic, A., & Gregory, S. (2005). The evolving role, impact, and needs of families. In D. Zager (Eds.), Autism spectrum disorders: Identification, education, and treatment (3rd ed., pp. 111-142). Mahwah: Lawrence Erlbaum Associates.6.
Eisenhower, A.S., Baker, B.L., & Blacher, J. (2005). Preschool children with intellectual disability: Syndrome specificity, behaviour problems, and maternal well-being. Journal of Intellectual Disability Research, 49, 657-671.7.
Hamlyn-Wright, S., Draghi-Lorenz, R. & Ellis, J. (2007). Locus of control fails to mediate between stress and anxiety and depression in parents of children with a developmental disorder. Autism, 11(6), 489-501.8.
Blacher, J., & McIntyre, L.L. (2006). Syndrome specificity and behavioural disorders in young adults with intellectual disability: Cultural differences in family impact. Journal of Intellectual Disability Research, 50, 184-198.9.
Quintero, N., & McIntyre, L.L. (2010). Sibling adjustment and maternal well-being: An examination of families with and without autism spectrum disorder. Focus on Autism and Other Developmental Disabilities, 25(1), 37-46.10.
Reaven, J. & Wainer, A.L. (2015). Children and adolescents with ASD and co-occurring psychiatric conditions: Current trends in intervention. International Review of Research in Developmental Disabilities, 49, 45-90.11.
Ghaziuddin, M. (2002). Asperger syndrome: Associated psychiatric and medical conditions. Focus on Autism and Other Developmental Disabilities, 17, 138-144.12.
van Steensel, F.J., Bogels, S.M., & Perrin, S. (2011). Anxiety disorders in children andadolescents with autistic spectrum disorders: A meta-analysis. Clinical Child and Family Psychology Review, 14, 302-317.13.
Ben-Sasson, A., Cermak, S.A., Orsmond, G.I., Tager-Flusberg, H., Kadlec, M.B., & Carter, A.S. (2008). Sensory clusters of toddlers with autism spectrum disorders: Differences in affective symptoms. Journal of Child Psychology and Psychiatry, 49, 817-825.14.
Wigham, S., Rodgers, J., South, M., McConachie, H.R., & Freeston, M.H. (2015). The interplay between sensory processing abnormalities, intolerance of uncertainty, anxiety and restricted and repetitive behaviours in autism spectrum disorder. Journal of Aut15.
Gerrand, S., & Rugg, G. (2009). Sensory impairments and autism: A re-examination of causal modelling. Journal of Autism and Developmental Disorders, 39(10), 1449-146316.
Bellini, S. (2004). Social skill deficits and anxiety in high-functioning adolescents with autism spectrum disorders. Focus on Autism and Other Developmental Disabilities, 19, 78-86.