Children diagnosed with autism spectrum disorder (ASD) may have great difficulties when their routines change, and this may affect the psychological well-being of their parents. For this reason, it is important to examine studies that address the mental health of parents in order to adapt to the coronavirus disease 2019 (COVID-19) pandemic.

To determine the mental health status of parents with children diagnosed with ASD in the COVID-19 pandemic.

The study, which is a systematic review, was conducted between December 15, 2020 and December 30, 2020 by scanning articles in English. The Scopus, Science Direct, PubMed, Cochrane, Web of Science, and Google Scholar databases were used for scanning. The keywords COVID-19 AND (“autism” OR “autistic” OR “autism spectrum disorder”) AND parent AND (“mental health” OR “anxiety” OR “stress”) were used in the search process. The inclusion criteria in the study were findings regarding the mental health of parents with children diagnosed with ASD in the COVID-19 pandemic, addressing their anxiety and stress situations, being a research article, and accessing the full text of the article.

In the study, a total of 6389 articles were reached, and the full texts of 173 articles were evaluated for eligibility. After the articles excluded by the full-text search were eliminated, 12 studies involving 7105 parents were included in the analysis. The findings obtained from the articles containing data on mental health in the COVID-19 pandemic of parents with children with autism spectrum disorder were discussed in three groups. These were findings on the experiences of parents with children with ASD in the COVID-19 pandemic regarding the areas where parents with children with ASD need support in the COVID-19 pandemic and methods of coping with the COVID-19 pandemic for parents with children with ASD. In the systematic review, it was determined that the anxiety and stress of the parents increased, they needed more support compared to the pre-pandemic period, and they had difficulty coping.

In this systematic review, it was concluded that the COVID-19 pandemic negatively affected the mental health of the parents of children with ASD.

The coronavirus disease 2019 (COVID-19) pandemic and disaster processes significantly adversely affect individuals with severe and chronic mental illness. Data on individuals diagnosed with autism spectrum disorder (ASD), which is one of the most common neurodevelopmental disorders in the world, and their parents’ experiences in extraordinary conditions are still limited[1]. The Diagnostic and Statistical Manual of Mental Disorders Fifth Edition defines autism as a pervasive developmental disorder characterized by disturbances in social interaction and communication (difficulty in social-emotional response, inability to use and understand non-verbal communication behaviors, inability to initiate and maintain communication appropriate to the level of development), limited and repetitive behaviors. The prevalence of autism, which causes limitations in performing the daily life functions of the individual with its early symptoms, continues to increase[2]. Autism begins in childhood and affects one in every 160 children in the world[3]. In a study conducted throughout the United States, it was reported that ASD was observed in one of every 54 children[4,5].

The World Health Organization (WHO) declared the COVID-19 epidemic as a global pandemic on March 11, 2020[6]. With the announcement of the pandemic, some restrictions started to be applied in countries. Initiatives to reduce the rate of transmission include behavioral recommendations such as comprehensive and frequent hand washing, maintaining social distance, avoiding in-person contact and wearing a facemask[7]. Groups with special needs have faced bigger problems during the pandemic. Children with ASDs and their parents are among the groups adversely affected by the COVID-19 pandemic[8-10]. The pandemic that caused mental problems even in healthy individuals has caused much more distress in children with ASD, who are extremely sensitive to changes in their routine[11,12]. Children with ASD may present the psychosocial distress they experience due to the pandemic in the form of aggression, tantrums or refusing to participate in daily activities[8]. Furthermore, children with ASD may have difficulties without training in hand washing, avoiding eye contact, and especially wearing a facemask. The necessity to wear a mask is particularly disturbing for any child who has sensory sensitivity and does not understand the rationale for wearing a mask[13,14].

Parenting a child with ASD may be stressful[15]. Meeting the needs of these children may be more difficult for parents due to the seriousness of their condition and the chronic spectrum, mental health comorbidities, intense interventions that children need and the difficulty of getting services[16]. During the pandemic, disruption in daily routines, difficulty in accessing health services, inability to access private care and the increased anxiety of parents worsen the psychological wellbeing of children and increase their behavioral problems[17]. Parents have a difficult period in management of children with special needs during the pandemic where people are confined to homes. Normally, the burden of parents was shared with care centers, schools and special education centers. Social distancing is placed between caregivers who can support parents in the care process, and individuals who support these parents in care such as grandparents and parents are left alone due to the risk of COVID-19 transmission[18,19]. As the burden of parents increases, their coping capacity may decrease[20]. The parents of children with ASD, who had felt isolated before the COVID-19 pandemic, may feel more lonely and stressed during the pandemic with compulsory social distancing[21].

Parental health and well-being are directly related to the quality of care parents can provide to their children[21]. In the COVID-19 pandemic, international organizations such as WHO, the United Nations International Children's Emergency Fund and the American Academy of Pediatrics have created guidelines to support parents in management of the pandemic and stress management[22-24]. Similarly, Narzisi[12] recommended the parents of children with ASD to explain what COVID-19 is to the child, structure their daily routines according to this process and maintain their connections with educational institutions so that they can have a healthy pandemic process. It is important for parents to be able to explain the pandemic process to their children so that they and their children feel safer. For this reason, parents should be supported in teaching their children social distancing rules[21]. It is very important that the parents of children with ASD receive social support and have access to professional health services in reducing their stress and improving their emotional wellbeing[16,25]. In the COVID-19 pandemic, anxiety and stress situations, needs and coping methods should be determined, as well as mental health conditions in parents with children with ASD.

This systematic review determined the mental health status of the parents of children with ASD in the COVID-19 pandemic.

This study is a systematic review. The Preferred Reporting Items for Systematic Reviews and Meta-Analyses protocol was followed in preparation of the study and the report. In this systematic review, to reduce the risk of possible bias, the processes of literature review, article selection, data extraction and evaluation of article quality were carried out independently by two researchers, each stage was checked in a session with the third researcher, and a consensus was established. In a session where the three researchers were together for carrying out the process in appropriate form and quality, a pilot study was conducted including searching through the PubMed search engine with a keyword (COVID-19, autism, parent) within the scope of the study, selecting an article, extracting data with five research articles and evaluating the quality of the articles. The differences of opinion and information that emerged after the pilot study were resolved through discussion.

Selection criteria and selection of studies

Inclusion and exclusion criteria: The articles in English, which could be accessed in full text without any limitation of publication year and country, were included in the study. The systematic review was created according to the PICOS strategy. Participants: the parents of children with ASD; Interventions: effects of the COVID-19 pandemic on mental health; Comparators: the parents of children without ASD; Main outcomes: anxiety, stress, difficulty in coping, loneliness, inadequacy of support systems, social isolation, change in routines and financial difficulties; Additional outcomes: exercise at home, practicing yoga and meditation, reading newspapers, getting support from a therapist, cooking meals, talking to their loved ones on online platforms during the pandemic. These results have been reported in studies and included and presented in this systematic review.

Studies suitable for this systematic review were included based on the following inclusion criteria. In the COVID-19 pandemic, the findings related to the mental health of parents with children with ASD and the anxiety and stress situations they experienced were handled, being a research article, the publication language was English, and the full text of the article was available. Studies with an unknown method and those dealing with the experiences of children with ASD in the COVID-19 pandemic were excluded.

Identification and selection of the studies were achieved independently by two researchers (Yılmaz B, Azak M) in accordance with the inclusion criteria. After repetitive studies were removed from the search results, selection was made according to the title, abstract and full text, respectively. The selection process followed in the systematic review is given in Figure 1.

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Figure 1 PRISMA flow diagram.

This study is the first systematic review aimed at determining the mental health status of the parents of children with ASD in the COVID-19 pandemic. The systematic review showed that the difficulties associated with the COVID-19 pandemic negatively affect the mental health of the parents of children with ASD. Restriction of face-to-face education, social activities, and child monitoring during the pandemic process threaten the physical and mental health of children. Parents worldwide are concerned about how to support their children best under these difficult conditions[8-10]. The distinctive features of the diagnosis of ASD put children with ASD and their parents at risk of more adverse effects from the COVID-19 pandemic. Since these children may have difficulties in social communication, they can develop when they are in environments that support their social interactions[38]. Although regular physical activity may provide a calming and regulating effect on children, they lack this opportunity due to the pandemic[8]. Considering all of these effects on children diagnosed with ASD, the inability of parents, who are deprived of support during the pandemic process, to maintain their mental health becomes prominent. Parents often experience mental distress as they postpone their own needs for their children with ASD and their families[21]. Disruption in healthcare support or services is an additional stressor on families with a child or dependent with ASD during an already stressful time because of the COVID-19 pandemic[39]. Restrictive social and economic regulations, discomfort caused by COVID-19, fear of transmission, isolated family life, closure of schools, lack of support programs for parents, loss of loved ones, work from home and the resulting increase in full-time childcare and home responsibility, as well as financial difficulties, are the main problems that parents experience in this process[8,17,28-32,39,40]. There has been a consensus on this issue in the studies included in this systematic review[17,28-37,39].

Sleep problems significantly affect children with ASD[41]. Studies on children with ASD reported that sleep problems lead to symptoms such as social withdrawal, anxiety and depression and behavioral problems such as self-aggression, hyperactivity, aggression and high levels of irritability during the day[42,43]. Another study noted that disruption in the circadian sleep rhythm increased the symptoms of ASD[44]. All of these effects of sleep problems negatively influence parents, causing an increase in the burden of these parents and an increase in their stress levels. In a study, it was determined that the situation of being home during the pandemic process caused sleep problems in children with ASD, and this situation increased the severity of ASD symptoms[45]. In the study conducted in Italy, it was reported that more behavioral problems were observed during the COVID-19 pandemic process, and these problems were associated with sleep[17]. The occurrence of these problems creates a sense of loss of control in parents and increases their stress[45]. All of these changes in the lives of parents and children also hinder the physical and cognitive development of the child. Therefore, it is clear that there is also an increase in parental stress levels during a pandemic that directly affects children's quality of life[46]. In a study, it was reported that, during the COVID-19 pandemic process, the parents of children with ASD experienced higher levels of anxiety about themselves and their children in comparison to the parents of children without neurobehavioral disorders[29,37]. Similarly, in the study by Alhuzimi[28] it was emphasized that the parents of children with ASD have higher stress levels and lower welfare levels. Manning et al[32] stated that children with ASD and their parents experienced high levels of stress during the pandemic process and reported that there were disruptions in their daily life routines. In this process, the issues regarding which they experienced the most stress were related to illness, isolation and materiality[32]. The fear of getting infected in the event of a pandemic is significant in the parents of children with ASD, and this fear increases stress significantly[47]. This was supported by the findings of the study by Manning et al[32] on the COVID-19 pandemic. Although staying at home during the isolation process and the obligation to quarantine are measures taken to reduce the transmission of COVID-19, harmful effects of social isolation on the mental health of children and parents may be observed[48]. This may further increase stress in children diagnosed with ASD and their parents[29,30,32]. Lugo-Marín et al[33] reported that there was an increase in somatization, obsessive behavior, depression, anxiety, hostile behavior, paranoid ideas, phobic anxiety and aggression in parents in 2 mo after the lockdown onset. Interruptions in the care process are an important need in the parents of children with ASD[49] and have an important role in reducing stress for the parents of children with ASD[50]. However, the decrease in the support received from caregivers during the isolation process and the fact that parents have taken on the entirety of the care burden have made it difficult for these parents to cope. Parents had difficulties in regulating their children's eating behaviors, providing authority to their children, making use of spare time and finding activities, and having their children do homework, and they felt lonely[30,34,35]. In the studies included in the systematic review, it was reported that, in order to cope with this situation, parents had rest breaks when there was another adult at home who could take care of their children with ASD[17,31].

An increase in the severity of ASD symptoms in children has an important role in affecting the stress and wellbeing levels of parents[51-54]. The COVID-19 pandemic process have caused more intense and more frequent behavioral problems in children with ASD[30]. In the study by Manning et al[32] one of the studies included in the systematic review, it was reported that the increasing severity in the symptoms of children with ASD along with the pandemic caused an increase in the stress reported by parents. Children who are confined at home exhibit aggressive and problematic behaviors, causing more stress for their parents and making it difficult to cope. In other studies supporting these results, the pandemic and the increasing behavioral changes in children with ASD were found to play a significant role in the increase of stress in parents[17,30]. Parental stress also reportedly had an effect on emotional well-being[28]. In this sense, there has been a consensus that there is a lack of support for children and parents.

The positive attitude of parents during the COVID-19 pandemic is necessary for them to manage their stress and also control their children's behavior at home[34]. Pottie and Ingram[55] pointed out the importance of social support in helping a parent with a child with ASD cope with stress and raise their mood. All kinds of support from the community and from parents who experience similar situations facilitate the home care processes of children with ASD and their parents[56]. For this reason, during the pandemic, it is necessary to maintain contact in online environments with all individuals and institutions that parents can receive support from such as other parents, teachers, therapists and health professionals who experience similar situations[12]. In a qualitative study, parents stated that, although they could not get together with other parents who were in the same situation during the pandemic, they supported each other in home care through groups established via online messaging applications and mentioned how this helped them[57]. Similarly, in the studies included in the systematic review, parents reported that they frequently made video calls with their families and friends[29,31]. Althiabi[34] found that parents sought support from teachers, family members and therapists to take care of their children with ASD during the pandemic outbreak. Bent et al[31] stated in their study that it is important to seek help from friends, family, co-workers, therapists and healthcare professionals, as parents must remain strong for their families and children. With the closure of schools, parents are struggling to find different activities at home to support the development of their children with ASD and prevent their symptoms from appearing[57]. In the studies included in the systematic review[30,31,34,35], in accordance with the literature, parents stated that they sought daily activities and events that their children enjoyed. All family members including parents who leave their jobs or work from home due to the pandemic and children whose schools are closed are at home all together. In this process, the support of all family members for each other in the care of the child with ASD also provides a significant reduction in their burden of care[57].

Children diagnosed with ASD can only survive the pandemic with healthy parents. Therefore, parents should take care of their health, both for themselves and their children. Firstly, parents should not disrupt their physical care with adequate nutrition and rest and accept the emotional burden they experience. They should practice spiritual self-care by planning an activity they enjoy. Parents should be encouraged to plan activities they can do with their children in the home environment. Moreover, they should be encouraged to seek help from healthcare professionals when they feel they have mental problems that they cannot cope with[21]. Consistent with the literature, Bent et al[31] reported that parents spend time with activities such as bathing, nail care and online shopping as a method of coping with stress. In the qualitative study, the parents stated that they used methods such as walking, cycling, yoga, meditation, reading a newspaper and praying to cope with stress during the COVID-19 pandemic[31]. With the web-based support program prepared by Liu et al[36] relaxation-muscle exercises, home activities with the child, protection strategies, emotional management, parental stress coping strategies and psychological counseling strategies to cope with the pandemic situation were implemented. Their study stated that mothers' stress and anxiety levels decreased, and parents reported feeling relaxed as the program facilitated parent-child interaction.

The COVID-19 pandemic has negatively affected the mental health of children with ASD and their parents. While many factors play a role in increasing the stress levels of parents, stress may also lead to different problems. In this case, it is possible for children with ASD to continue their lives in a healthy way with mentally healthy parents. In the systematic review, it was concluded that parents with children with ASD had difficulty with their children being at home all day long and financial difficulties as they had to quit their jobs. The parents were also able to devote less time to themselves during this process, and their stress and anxiety levels increased. During the pandemic where face-to-face services are interrupted, governments and relevant institutions should provide support for parents with children with ASD, and institutions that provide support should also work to improve the quality of the support they provide. In this process, it may be recommended to research new ways such as online health monitoring, online diagnosis systems, support groups for children and parents, increased tele-health services, tele-therapies and e-health support. Additionally, after the restrictions imposed by the pandemic are removed, it is important to support children with ASD and their parents while they are getting used to their social lives. Support services, such as counseling and helplines, may be created to help parents share their concerns and receive assistance in dealing with specific situations. Parents should be evaluated in terms of mental health, and professional help should be provided for individuals who need support.