The Impact of Pandemic Lockdowns on Caregivers of Autistic Children

What impact have the COVID-19 lockdown measures had on families and caregivers of children with autism? Recently, researchers reviewed 23 reports on the sources of stress, the influence of caregiver mental health, and support programs to help them. They found that the pandemic lockdown measures increased the caregivers’ risk of mental health challenges and their impact on overall family wellbeing. They concluded that more evidence-based supports are necessary for families with autistic children.

Introduction

The continuing COVID-19 pandemic has multiplied existing and new stressors for families of autistic children and increased the challenges to support their needs. Prior to the COVID-19 pandemic, the existing peer-reviewed literature indicated that parents of autistic children and adolescents can experience considerable mental health problems including high rates of distress, depression and anxiety, financial stress, and overall lower rates of quality of life. Family caregivers frequently have many demands related to the complex needs of caregiving, which can add to mental health challenges. This includes having to provide ongoing care, act as therapists, advocates, navigators, or teachers in providing supports, and manage high rates of child and adolescent behavioral difficulties. They do this while balancing their own needs.

A caregiver’s mental health and wellbeing are important because of the impact on a child’s mental health, parent-child relationships, and overall family functioning. For example, the Family Systems Theory demonstrates the interconnectivity of family members and the influences of each member’s emotional wellbeing and behavior has on each other. In addition, the theory highlights the importance of flexibility between family members and as a unit that impacts their ability to adapt to stress. Many studies show the link between parent stress and child behavioral problems. For instance, higher levels of caregiver stress often correlate with higher reports of externalizing and internalizing behaviors. Caregiver mental health can have an impact on an autistic child’s general development, including adaptive functioning, academic achievement, self-esteem, and friendships. Poor caregiver mental health can also lead to lower levels of marital harmony, which also influences how the family functions.

Because of the pandemic-related social distancing measures like lockdowns, many caregivers have faced more stressors and mental health challenges than prior to the lockdowns. The Family Adjustment and Accommodation Resource Model (FAAR) is often used to understand the processes that lead to family outcomes in the face of stressors. It is appropriate to use it to understand the context of a family coping during COVID-19. The FAAR model suggests that a response to stressful life events involves the interaction of three domains: demands, capabilities, and the family’s meaning. Demands involve the sources of stress, strains, or negative circumstances that persist over time. The COVID-19 pandemic is an extreme example of an external stressor that can exacerbate many demands on caregivers.

Studies have documented how families have experienced abrupt changes to their routine, limited access to resources. Many caregivers also lost financial supports such as loss of employment and income. Public policies exacerbated the challenges that families of autistic children faced. This increased the vulnerabilities of the caregivers towards mental health issues.