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.
When demands increase, families rely on their capabilities, external resources, and internal resources to respond to the additional pressures. They may need new services to address the additional stressors caused by the COVID-19 lockdowns to improve their mental health. Unfortunately, social distancing requirements eliminated most in-person social, educational, and therapeutic programs. This limited the assistance that families had access to. In addition, families with the same stressors and services may still experience different outcomes because of their individual perceptions. Their outcomes are dependent on their subjective insights into their challenges.
It is crucial to support the mental health of caregivers and families with autistic children. It is also important to determine which services and supports promoted resilience during and after the lockdowns. Several researchers reviewed the existing literature to better understand the mental health concerns of caregivers and what helped families remain resilient despite greater stressors. They used the FAAR model as a framework to pinpoint what helped families balance demands and capabilities. They also looked at how families perceived their experiences.
Pandemic-related demands
The researchers looked at 23 peer-reviewed articles from Europe, Asia, and North America that described the demands placed on caregivers and families as a result of isolation policies meant to restrict the spread of COVID-19. They found the following information.
School and service closures
Parents reported on the increased demands for caregivers due to school closures, which resulted in a loss or reduction of educational services, childcare support, behavioral therapies, and programs for autistic children, including trained teachers, one-on-one support, behavioral interventions, educational assistants, clinicians, therapists, and specialists. This meant that the caregivers assumed the additional roles, which greatly increased their workloads, many times to 24 hours a day or round-the-clock care. They continued to have their usual family responsibilities and obligations on top of the extra work. Many parents reported feeling inadequate to meet their child’s educational and developmental needs.
Increase in challenging behaviors and parental stressors
Parents reported an increase in challenging behaviors such as aggression, frustrations, violence towards self and others, and outbursts. The families frequently experienced greater conflicts. Additional stressors were due to abrupt and unpredictable disruptions to the child, caregiver, and family daily routines, loss of respite, loss of caregiver employment leading to financial instability, and loss of recreational and community-based opportunities.
Increased vulnerability to mental health issues
The researchers discovered that self-isolation measures produced higher levels of psychological distress in parents like anxiety, stress, distress, helplessness, and psychological wellbeing. Parents reported experiencing anxiety related to safety and avoiding a COVID-19 infection. This included anxiety when trying to communicate with their child about the virus, loss of income, and high financial strain. The prevalence of depression, anxiety, and symptoms of stress were high within a sample of parents of children with autism and cerebral palsy in India. The strain was significantly higher during the pandemic compared to prior years, and when compared to caregivers of neurotypical children in a Turkish sample. Child maladaptive behaviors were linked to parental self-reported levels of stress. American parents with younger autistic children and those with more complex needs reported higher levels of stress and concern during the early stages of the pandemic. Other findings from the US, UK, and Canada indicated that parents were “very stressed” and “coping poorly” with reports of feeling worried, anxious, isolated, and depressed. In one US report, 97% of parents or caregivers indicated feeling stressed or overwhelmed due to disruptions in autism-specific services or therapies, and 95% of parents reported that COVID-19 had negatively impacted their mental health.
Long-term impact of isolation
Ten of the peer-reviewed reports looked at the potential long-term impact of increasing demands on the mental health of caregivers and families of autistic children. The articles pointed to the need for quick development and flexible, timely, and web-based support programs. For example, one report suggested that given the long-term uncertainty of the pandemic, caregivers were repeatedly faced with financial instability, unpredictable situations, and outcomes. It noted that therapists, clinicians, and schools responded relatively quickly to offer programs online. However, the impact of these changes needs to be tested and investigated into whether these new delivery models are effective.
Capabilities during the pandemic
The researchers included many letters to editors, editorials, commentary, and technical guidelines that provided advice on how caregivers can manage their demands by increasing their capabilities during the pandemic. Ten publications provided clinical advice to help families, especially those with autistic children with higher levels of social communication challenges and repetitive stereotypical behaviors to manage their time during the pandemic. Recommendations to parents included re-establishing a “new normal” by reinstating a daily or bedtime routine, giving attention to sensory stimulation, creating visual schedules, allowing adequate but limited exposure to media and regulated screen time, attention to personal and family healthy behaviors, using communication strategies, sharing special interests with their children, and providing physical activities for their children.
Remote services and telehealth
Ten articles and one published report described the importance of caregivers and families remaining connected to educational services, behavior therapists, and community resources during the pandemic lockdowns. For example, some families maintained consistent contact with teachers and school administrators either through phone or online meetings, and some teachers continued consulting with parents on how best to provide at-home education to their autistic children. Some suggested that telehealth adaptations should remain even after stay-at-home measures are lifted, especially if adequate alternative forms of care for this population remain unavailable. Schools adapted their lessons via online virtual platforms and continued to provide modified educational experiences for families. However, their effectiveness in mitigating behavioral challenges was not investigated. There were examples of behavior therapists who adapted their interventions or curriculums so that parents could deliver programs at home, and who provided online consultations with parents. The studies found that the delivery of virtual support was inconsistent and only moderately beneficial. They also found significant geographical, financial, and cultural barriers that limited the effectiveness of virtual support. In addition, virtual services were frequently inadequate for children with limited verbal capacity or those with complex issues.
Coping strategies
In one study, researchers asked parents to list coping techniques they used in response to lockdown measures imposed by the pandemic. The parents listed exercising, attending virtual groups to connect with their community, spending time on self-care, and getting creative with time away from their partners and children as coping mechanisms. Some parents reported that school closures meant that their child’s school curriculum refocused from academics like reading, writing, and math to daily living skills like self-help. This benefited both the child and the caregiver, as the child developed some independent skills. Other parents coped by implementing behavioral strategies, re-establishing routines, practicing meditation, providing space for family members to decompress, and taking breaks from each other. A small number of parents noted the benefit of receiving government financial aid. Other parents recognized that efforts to balance increased demands during the pandemic could leave them and their families vulnerable to mental health challenges. Some parents wanted help addressing increased personal anxiety through access to mental health services during isolation, but they were unable to do so.
Caregiver perceptions of the pandemic lockdowns
There was relatively little literature regarding how caregivers perceived the pandemic lockdowns. Media reports on caregivers of autistic children highlighted the protective effects of connection and close social relationships like Facebook groups by fostering a sense of community. Some parents reported finding Facebook communities or parent support groups a vital resource during the pandemic. A number of ethnically and linguistically diverse parents noted enjoying seeing communities come together to support each other during the pandemic. Parents of children with disabilities relied on these online communities for support, especially when their own personal communities were unable to help them due to isolation guidelines. Some families reported that supportive relationships and positive socially distanced interactions with family members like reading stories together on their phones, and daily text check-ins were helpful in maintaining feelings of normalcy during this time. Supporting caregiver and family cultures was a theme within the literature that highlighted the attitudes towards family cohesiveness and culture that led to caregiver and family resilience.
Discussion
This review of 23 peer-reviewed articles identified the demands, capabilities, and how families were making meaning of their experience through the COVID-19. The synthesis revealed that caregivers of autistic children are faced with increased demands and external stressors that are having an impact on their mental health and wellbeing. Families have experienced abrupt changes to their routines, limited access to their autism-based supports such as interventions, therapists, respite, schools, and other professionals. They struggled with the pressures of confinement. While families engaged internal and external resources to cope with the abrupt changes in their lives as a result of the pandemic, there is also a reduction in existing resources, impacting the ability to balance the new stressors. Reported family outcomes were quite variable, with some families coping and experiencing positives during the pandemic, while others experienced a crisis. The study highlighted the importance of the family’s belief system and how they perceived the adversity.
Caregiver mental health
While there have been numerous studies on the demands of the pandemic on families and the potential impact on their mental health and family functioning, only a few investigated the potential mental health outcomes for caregivers and families of autistic children. Given the vulnerability to existing mental health concerns in caregivers of autistic people, it is important for clinicians, key-decision makers, and policymakers to consider the impact of the unpredictable demands of the pandemic along with pre-existing stressors due to caring for autistic children on caregivers. A host of parent-focused surveys were launched in the first wave of the pandemic aimed to better capture the information about the mental health challenges in caregivers and families. Researchers are still compiling the data, which will provide useful information about family experiences. In addition, it will be crucial for future studies to include considerations of cultural and regional variations in COVID-19-related responses that may impact caregiver mental health. This includes validated measures of mental health that can properly quantify and describe symptoms and how they change over time in terms of their intensity and frequency.
Considerations for caregivers from diverse communities
There are several gaps in the current literature. The nature of the pandemic lockdowns highlighted the lack of access to health, educational, and social services that marginalized communities faced. For example, reports emerged highlighting how women, especially those from ethnically and linguistically diverse populations, experienced higher levels of financial burden and loss of employment. In addition, mothers reported high levels of anxiety, depression, and stress due to the pandemic.
Prior to the pandemic, studies have shown how these areas greatly impact families of autistic children. However, no studies have looked at these factors during the pandemic. Thus, it is difficult to provide evidence-based conclusions. However, it seems reasonable to assume that the lockdowns exacerbated the disparities in the social determinants of health. Lack of access to healthcare has been a continuing concern in many ethnically and linguistically diverse communities. This includes reports of disparities in access to timely diagnosis and developmental interventions that are associated with language barriers and socioeconomic status, and mental health literacy, stigma, and discrimination. The demands associated with caring for an autistic individual, especially those with complex needs, may be compounded by these specific variables, which may make caregivers more vulnerable to the impact of the pandemic.
Changing parent-child dynamics
The current articles do not investigate how the heightened levels of psychological distress might impact the quality of relationships among caregivers, parents and their autistic children, and siblings. Considering the impact of a caregiver on the developmental outcomes of their children along with the difficulties that autistic people may experience adjusting to extreme changes in routines, these demands pose a significant risk for the emotional adjustment of all children. This will likely result in behavioral challenges like tantrums, aggression, emotional outbursts, difficulties with transitions, and self-harm. Considerable evidence shows that the pandemic lockdowns had a negative impact on the mental health and of autistic children and adults with intellectual and developmental disabilities. It is highly probable that families experienced hardships that were exacerbated by the pandemic. This would change the family dynamics and parent-child interactions. More research will help in understanding the unique challenges posed by the pandemic on autistic people and their families, and how this may be addressed by supports that target child emotional development and mental health, promote positive interpersonal connections, parent-child relationships, and family wellbeing.
Considerations for virtual services and telehealth
Many schools and therapists have adapted lessons and interventions for online platforms and have been able to continue providing modified programming to autistic children like phone consultations, adaptations to virtual delivery, dropping off physical kits to parents, meeting in and parks. However, very few of the modifications have adaptations have been tested for their efficacy. Rather, the literature suggests that most have been adapted as urgent family needs arise. Previous studies show that there are benefits to participating in online interventions for caregivers of autistic children and autistic adults, but none took place during the global pandemic. More studies are necessary to pinpoint which web-based lessons or interventions will meet the needs of autistic children during times of isolation, including the impact of participation in online programs on the wellbeing of the children and their caregivers and family.
Final thoughts
It is important to note that this review of the research was limited by certain factors. The studies occurred primarily during the earliest days of the pandemic lockdowns. Therefore, they did not investigate the impact as the lockdowns dragged on. Still, there is considerable value in reviewing, synthesizing, and documenting what has been published to understand the full extent of the demands and capabilities that families experienced throughout the duration of the pandemic measures. As conditions continue to evolve and the various communities adapt, new evidence may provide more insight into the experience of caregivers of autistic children and highlight the ways in which mental health has been put at risk. The studies may provide insights into appropriate supports. The majority of articles included in the review varied in quality. Thus, the results should take that issue into consideration. Plus, the articles were primarily from English-only literature and the survey respondents were primarily mothers, which also limited the scope of the review. Still, the themes and data are relevant.
There is growing awareness of the pandemic’s impact and the increase in stressors and demands placed on caregivers of autistic children. More studies on caregiver mental health throughout the pandemic are necessary, including studies that investigate the changes in family dynamics, the efficacy of modified online services, factors that impact resilience, and the perceptions of caregivers. Doing so will increase our insights into how the pandemic public policies impacted caregiver and child behaviors. Service providers and policymakers can use this information to adapt their responses, which will improve mental health outcomes.