Abstract
The lockdown that was imposed by governments as part of the attempt to contain the COVID-19 pandemic included extreme measures, such as home confinement and the shutting down of special education systems. Our aim was to learn about the core experiences of parents of children with autism during this significant life disturbance. Thirty-one parents of 25 children with autism participated in semi-structured telephone interviews which were transcribed verbatim and underwent a qualitative, immersion/crystallization analysis. The analysis was conducted in an iterative consensus-building process to identify parents’ experiences, concerns, challenges, coping strategies, and perceived needs during the lockdown. The main themes that emerged related to the various parental concerns; the major difficulties encountered during this unique time, the functional, social, and behavioral implications the lockdown had on these children; and the manner in which the parents coped as an indication of their resourcefulness and outlook. Our findings broaden the insight into the underlying elements of the hardships and gains experienced by children with autism and their parents in times of significant life adversity. Programs in such times should be directed at supporting and guiding parents on how to better accommodate to the situation, thereby optimizing their coping strategies and resilience.
Lay abstract
The lockdown and home isolation due to the COVID-19 pandemic led to significant transformation in lifestyles. Being a parent in this situation was not easy for anyone, much less for parents of children with special needs. The shutting down of special education systems meant that parents lost a vital support network and had to be the sole full-time caregivers despite often lacking the skills to cope with this new and daunting situation. We interviewed parents and learned that the main difficulties faced by homebound autistic children stemmed from the change in routine, lack of special education services, limited physical space, and food- and sleep-related issues. Some children experienced worsening in behavioral, social, and developmental domains, yet others seemed to not only overcome the challenges of changing conditions but even benefit from them. The children’s success or failure was directly related to how their parents coped. The key factors that enabled successful coping were the parents’ ability to accommodate to the child’s needs, their own creativeness and resourcefulness, and a generally positive outlook. The results of this analysis revealed that the best way to benefit autistic children caught up in drastic changes in their routine lifestyle is to invest in a strong support system for their parents.
Introduction
As the spread of COVID-19 continues, governments worldwide have created policies for imposing exceptional quarantine measures (Parmet & Sinha, 2020). Those who were not infected or ill were required to isolate themselves under strict conditions that forbade leaving home and gather in groups. While coping with this situation with a typically developed child is challenging enough, it presented additional distinctive forms of difficulties for children with special needs. In ordinary times in Israel, where this study was conducted, there is a specialized education system for children with autism spectrum disorder (ASD). They attend classes of up to 10 children, usually with a child to trained teacher ratio of 1:2.5 from early morning until late afternoon, 6 days a week, where they receive treatment from the different special education services.
During the lockdown, there was a complete shutdown of all the educational systems and no type of service utilization was offered, which meant the loss of a support network consisting of teachers, social workers, and healthcare professionals. Without sufficient tools and lacking the option of recruiting family help, parents had to take the role of being both full-time caregivers and educators, all this while trying to manage their own jobs from home, dealing with potential health threats, and, for some, coping with mounting financial pressures. Stringent restrictions on movement were enforced nationwide. These restrictions prevented people from traveling more than 330 feet away from their homes and allowed only one designated family member to shop for food and essentials. Isolation for 14 days in a room within the household for was mandated if a family member had been exposed to a COVID-19-positive person or showed any characteristic disease symptom.
Most of the literature on parents of children with autism who cope with crises relates to the crisis of learning of the child’s diagnosis of ASD (Lappe et al., 2018; MacPhee et al., 2015; Weiss et al., 2014; Yeager, 2015). There is sparse literature on the coping of autistic children and their families with life crises or significant disturbances. The existing literature discusses the impact that disasters (such as an earthquake) have on children with autism and suggests the need for improvement of adaptive abilities after a post-disaster intervention (Valenti et al., 2012). One report also addresses the feasibility of a unique parent–teacher intervention for civil war refugee parents of children with autism (Dababnah et al., 2019). Another explored how traumatic events affect children with autism, and proposed that they are at an increased risk to suffer from trauma-related psychopathology (Kerns et al., 2015). An additional important report (Edmonds, 2017) noted that children with disabilities are often forgotten even when emergency planning is in place.
Moreover, there have been several opinion papers that discussed the possible consequences that the COVID-19 pandemic may have on individuals with autism and their parents. They mentioned that individuals with autism are especially vulnerable to conditions of a prolonged isolation due to their difficulties appraising the situation, adapting to new routines, and receiving medical treatments for their comorbidities. This, in turn, may negatively affect their progress (Amaral & de Vries, 2020; Eshraghi et al., 2020; Narzisi, 2020). One study that was based on an online survey described that individuals with ASD experienced difficulties with managing structured daily activities and an intensification of behavioral problems during this period (Colizzi et al., 2020). A number of other reports highlighted the need to support this population through delivery of specific programs for meeting their needs (Smile, 2020; Yahya & Khawaja, 2020). Finally, an important editorial shed light on the inequalities that individuals with autism are prone to experience during these times: exclusion from appropriate care, exposure to domestic violence, deleterious effects on mental health, and unemployment and poverty in the adult autistic population (Pellicano & Stears, 2020).
Still, there is a need to explore and characterize in-depth the experiences of parents and children with autism who have been going through the ramifications of a complete lockdown, and perhaps to glean from this information how to further support this population in times such as these. This was the aim of this study, and we used a qualitative approach since it can provide real-life descriptions and an understanding of the core of this complex phenomenon.
Methods
We conducted telephone interviews with 31 parents of 25 children who were diagnosed with ASD. All of the participating families live in urban areas, and the interviews took place 1 month after the complete lockdown was imposed. Autism community members were not involved as partners in the design, implementation, interpretation, or dissemination of this study. After receiving institutional review board approval, the Child Development Institute database was accessed, and medical charts of children who were diagnosed with ASD during the last 10 years were retrieved. That information included demographic data (age, sex, place of living, age of ASD diagnosis, educational system enrolled, socioeconomic status of family, and education of parents) and clinical data (ASD severity levels, developmental quotient (DQ) at the time of diagnosis, and medical comorbidities). Participants were drawn from this pool, and we recruited children from families of low (n = 7), middle (n = 8), and high (n = 10) socioeconomic backgrounds and in which the children had a high (n = 8), intermediate (n = 8), or low (n = 9) level of severity of autism in an effort to diversify the sample. The sample of children with ASD who were selected included 22 males and 3 females with a median age of 5 years and 11 months (interquartile range from 4 years and 11 months to 6 years and 11 months), and the median time from diagnosis of ASD to the time of the index interview was 3 years and 2 months (interquartile range from 2 years and 3 months to 4 years and 10 months). There was 100% acceptance of the invitation to participate. Recruitment was stopped once data saturation was achieved (after interviewing 31 participants from 25 families). The lockdown conditions did not change throughout the period of recruitment. Table 1 summarizes these clinical and demographic characteristics, and includes additional information pertaining to the number of adults living with the children in the household and the current work status of the parents in the lockdown.
Clinical and demographic characteristics of the study participants.
DQ: developmental quotient; ADHD: attention-deficit hyperactivity disorder.
As determined by Diagnostic and Statistical Manual of Mental Disorders (5th ed.; DSM-V).
The interviews took place in April 2020, and the parents were interviewed either individually or together, depending upon their convenience and availability. All interviews were carried out by the first author, who did not have a previous relationship with the interviewees, with the exception of one mother whose child was diagnosed with ASD by him. After obtaining telephone-recorded consent to participate, the parents were asked a series of 10 open-ended questions from a short semi-structured interview guide developed specifically for this study. Two questions had possible follow-up options and further probing was done when additional explanations about parental experiences were needed. The interview guide consisting of the main questions is provided in Table 2. The interviews were conducted over the phone at the beginning of the COVID-19 outbreak. These interviews were concise and to the point since the study children were confined to their homes thus requiring parental attention and involvement. Parents immediately started sharing their experiences, and spoke freely and openly, making the interviews rich with content despite their lasting only for a mean of 22.2 ± 5.2 min. The opening question queried about the parents’ initial feelings when the lockdown was announced, and it took 4–5 min to answer, longer than the other questions, which took an average of 2–3 min each.
Questions asked during the interview.
All of the interviews were transcribed verbatim and de-identified by an external professional transcription expert. Accordingly, participants appear in the manuscript through pseudonyms that were assigned to them. Transcripts were an average of seven pages long (range = 4–10 pages). All interviews were conducted in Hebrew. The translation of the data into English followed the analysis and selection of quotes in order to keep interpretations as close as possible to their sociocultural context and ensure high interpretative validity (Michael et al., 2018). All authors consulted with each other and with a professional English editor to ensure translation validity when translating complex constructs or metaphors (Squires, 2009; van Nes et al., 2010).
The analysis was carried out using the immersion/crystallization narrative method, a qualitative systematic process for identifying emerging themes (Miller, 1992). The first step of the analysis focused on familiarizing ourselves with the data, by reading and re-reading the interviews. This was an inductive process that enabled a broader understanding of child and parental experiences, concerns, and lessons learned during this unique time. Each interview was analyzed separately by two different researchers (see below) to learn about the specific parental experience (horizontal analysis; Borkan, 1999; Meitar et al., 2009). Based on this process, we developed an extensive list of codes that were entered into a codebook (Karnieli-Miller et al., 2013; Patton, 2015). This was followed by a second reading of the interviews, coding all of them, removing duplications and overlaps, and clustering codes related to similar content into common categories (Karnieli-Miller et al., 2010; Miller, 1992). This allowed for comparison between the interviews (vertical analysis; Borkan, 1999; Meitar et al., 2009).
The analysis of the themes focused on understanding the feelings, perspectives, and thoughts of parents of children with autism as they cope during this unique lockdown period. To ensure the trustworthiness of our data, we used investigator triangulation of shared analysis by two researchers (Karnieli-Miller, Michael, Eidelman, & Meitar, 2018; Karnieli-Miller, Palombo, & Meitar, 2018; Patton, 2015). The first batch was analyzed by the first and third authors, one of whom is a child development specialist experienced in treating ASD and the other is a PhD in social work and a medical educator, who is an expert in qualitative studies. The analysis included an iterative consensus-building process of reading and re-reading each interview separately and then discussing the themes that emerged, verifying that they faithfully reflected the content of the reported material and not our own impressions. This collaborative and iterative data analysis allowed examination of additional opinions and a reflective process that focused on differentiating between our personal experiences and perceptions as therapists and parents (Goldberg et al., 2015) and the actual information that emerged from the transcribed text (e.g. thinking that the lockdown would be experienced very badly by all parents; or identifying unique ways of coping developed by parents). When there was disagreement with the coding, we re-read the entire transcript. We moved back and forth from the specific quote to the entire transcript as a narrative, as required in immersion/crystallization (Karnieli-Miller, Palombo, & Meitar, 2018) to understand the quote in context. Furthermore, a reflective process was implemented at the end of each interview, focusing on the way questions were asked, in order to ensure the quality of the interview (e.g. encouraging the use of more probing questions based on the interviewees words to allow them to share their perceptions).
Results
Four main themes and 11 subthemes relating to the challenges and the coping of children with autism in the lockdown period emerged. The first theme was “Shutting down of special education systems” which described the initial parental concerns over the closure of the special education systems. The second theme was “Crude logistics of a pandemic-induced lockdown” which reflected the major difficulties parents had encountered during this unique time. The third was “Chronicles of regression and evolution” that discussed both the positive and negative functional, social, and behavioral implications of the lockdown on these children. The fourth focused on the manner by which parents coped (“Coping strategies”). Table 3 depicts these themes and their associated subthemes.
Themes and associated subthemes of the coping of children with autism with the lockdown due to the COVID-19 pandemic.
Shutting down of special education systems
Fearing the implications
Regardless of the child’s age and ASD severity level, parents were unanimously upset about the “special education time” their child will miss, and the possible developmental repercussions this might have:
I was extremely anxious. It took my daughter three months to assimilate in the new, amazing educational system. Until she finally got used to it and agreed to go with joy, and we see the progression she’s made, my heart is simply broken, it’s horrible. It was like a bomb that fell on us, out of the blue. What will happen now? All of it will be wasted? (Stephanie)
Concerns were raised both for the time lost as well as the possible future setbacks, especially for those supposed to attend first grade:
My child is not being treated right now. That’s the scariest, because he’s supposed to attend 1st grade next year. This year was supposed to give him the “push” that he needed to be as best prepared as he can be. Early childhood is the money time of development. (Barbara)
In addition to fearing regression, there was sadness about the cessation of general care by dedicated teachers: “We were worried about the loss of all the treatments, and of our child not attending the kindergarten. It’s not only the paramedical treatments, it’s the attention the kindergarten teacher gives him” (Emily). There is expressed awareness of the added value of the special education teachers who are able to provide unique emotional attention.
Lacking the tools needed
All of the parents indicated they did not have the knowledge or means to supply their children’s developmental needs:
My fear is that development will stop because there is no continuity with the special education services. As a parent, you are limited with what you can do with your child. Our understanding and knowledge of the developmental field is limited. Really, as parents, how much can we really understand and help these kids? (Nancy)
The knowledge and experience of special education professionals are emphasized. This adds to the sense of helplessness that was perceived by most parents. They mentioned the recurrence of problematic behaviors:
The head banging returned, and my son also licks his hands obsessively. This had already improved because the speech therapist used to work with him with all sorts of teething rings. I tried to do it. I brought him a dummy and teething ring, but I can’t do it as efficiently. (Nancy)
A link is made between the absence of speech therapy to the increase of repetitive behaviors. Corresponding with these fears, most parents expressed a wish that the special educational systems would reopen, regardless of the opening of the economy or the regular education system. This was usually communicated simply: “We just need the education systems to reopen. It’s the only thing that can make these children progress” (Sarah). Parents suggested creative solutions to these needs: “It would help if paramedical personnel could do one-on-one home visits” (Teresa). Or: “It would be helpful to meet with paramedical personnel in open areas that were previously disinfected” (Carol). The parents suggested various measures that could be taken to make this possible, for example: “They could attend smaller classes, or maybe checked for Coronavirus, and if proven negative, that will enable their admission” (Jennifer). They stressed that this is crucial: “As long as the supermarket cashiers are working, I think the special education teachers should be considered vital as well and a way should be found for them to work” (Barbara). A sense of discouragement could be reflected from these examples, but the originality and ambition of parents sends a message of faith and shows their strong devotion to their children, whom they feel are in need of assistance.
Crude logistics of a pandemic-induced lockdown
Difficulties of various degrees were communicated by all the families. However, the way they were handled seemed not to be dependent upon the means available or the severity level of the child’s ASD.
The need for speed (and space)
One of the most frequently mentioned challenges was the lack of means and space for children to expend energy, leading to various levels of psychomotor agitation. Several parents described this need: “He’s a very active child that will go wild, ruin and break stuff if he doesn’t have a place to expend energy. He must have space, run and breathe. He’s not used to being at home all the time” (Brenda). The son’s need for space creates a challenge. Comparing movement to air means it is impossible to live without. Another parent said: “My boy is miserable and unfortunate now because he’s used to being outside. I usually take him out every day to the yard, and now I can’t. I live in a one-bedroom apartment, the boy is not finding himself” (Christine). Feelings of helplessness are used to describe the suffering of being in a small space. Other parents, aware of these difficulties, shared their initiatives to try to find solutions: “When we first heard about the lockdown, we were very anxious, so the first thing we did was to buy a trampoline so that our son will have a way to expend energy and solve his needs to move” (Sarah). The anxiety led to an original solution. The ability to manage the challenge is described in positive terms, and not necessarily related to ability to buy a solution. Another parent of a family living in a small flat shared her insights:
We’re lucky, we have a yard below our building. I take him out in odd times of day when I know there are less people outside. We take a half-hour walk and come back upstairs . . . it’s something . . . Previously, we used the swing in the playground . . . now he constantly rocks himself forwards and backwards as compensation. So, I try you know. We have a physio-ball so I bounce him on it all the time. (Nancy)
The mother found creative, non-dangerous, ways to deal with her child’s needs, feeling lucky to have the yard (which is actually a parking lot) as a solution.
You are what you eat (and how you sleep)
Many parents voiced the worsening of food-related unusual behaviors in their children during this time. This may be food selectivity and/or restriction, binge eating, and peculiar eating patterns:
All day long he opens the refrigerator. He just wants to eat all day. He can’t get full. He just stuffs more and more things in his mouth and he cries and shouts that he wants more food. He’s getting fat and it’s unhealthy . . . No one can help him. I need to buy a lock for the fridge. He turned into a teddy bear. He’s really chubby. (Christine)
The mother feels helpless and describes the child using demeaning terms. Food is experienced as a struggle: “He started to ‘give us problems’ in his food habits. It takes him an hour to finish a plate. He eats like a turtle. It didn’t use to be this way” (Andrew).
Another challenge was experienced by children who were used to the food provided by their special educational systems:
I pity my son for his difficulty to deal with different types of food. He eats only specific foods. He was willing to eat only the schnitzel they give him in his kindergarten, which we can’t get, so now he started to eat chocolate pudding. He eats 13–14 of those a day. (Dorothy)
There is sensitivity to and acceptance of specific needs, together with a compromise of allowing the child to eat unhealthy and expensive food. The mother is aware of this, and even states this later in the interview: “. . . I’m not the perfect mother, so sometimes I close my eyes” doing whatever it takes to cope with her child’s daily struggles.
Finally, in some children eating behaviors had improved:
My son is used to eating strawberries every day. Now we get a supply of strawberries only every 10 days. Once I used to be anxious if he didn’t have strawberries, also because it’s his only source of vitamins. Now I have to negotiate with him, and I see that he is willing to compromise and try things he never ate, or that I never dared to offer. I never believed this would happen. (Amanda)
Daring to offer new food represents the mind-set change that occurred due to the lack of choice. Sleep was also a common topic. Many children found it difficult to fall asleep and/or suffered from frequent awakenings and night terrors: “He’s afraid to fall asleep. He prevents himself from falling asleep with a lot of strength. He is really tired and just holds on” (Suzan). Suffering of the child is expressed together with complimenting him for his inner strength.
The reality of the pandemic has many unknown variables that can induce fear or anxiety, conceivably affecting sleep patterns: “My son had several events of anger outbursts during the night. He was wild and crazy. He wouldn’t go back to sleep and screamed. I turned to a sleep clinic but due to the situation they are not working” (Brenda). The adversity is increased as the outpatient services of the hospitals also shutdown.
Some parents searched and found new ways to deal with sleep-related matters:
I was able to get a hold of melatonin from the United States. I manipulated the system. Since then the child is going to sleep amazingly! Whenever I want him to! If I wouldn’t been able to get this melatonin, you would be talking to a corpse now. (Dorothy)
In her desperate search for a way to deal with sleep deprivation, the mother discovered how to acquire melatonin that is unavailable in Israel as an over-the-counter medication. She did so based on other parents’ advice, not consulting with a health professional.
New routine
One recurrent theme described weariness from the monotonous daily routine. Descriptions of boredom and lack of ability to entertain oneself were common:
My son is a smart kid who needs constant intellectual stimuli. This is a challenge. The lack of routine is very difficult for him. We try to establish a routine, but it’s not like the one he had in school. It’s hard for him not to know what day it is, or what he has to do in each hour of the day. It causes a lot of anguish. (Linda)
Some parents tried to recreate a sense of sameness for their children: “We do as much as we can to make it seem like a regular day. Breakfast, study a bit, lunch and continue to maintain a normal structure” (Rebecca). Some parents tried to use the time as efficiently as possible:
I expected the worst, and touch wood, my husband and I are really “on it.” Luckily, we have made a “home educational program” that we implement day-by-day. We accompany our daughter in her school work, we’re present and involved. It’s not like we place our daughter in front of the TV all day and don’t do anything with her. We do things with her to make her advance and improve, and it’s wonderful. (Stephanie)
The task of making this period worthwhile seems to have been rewarding. In other instances, the advantages of inner peace outweighed the disadvantages of the lack of structure: “My son is calmer and quieter now, because no one is demanding anything from him. At school there are many demands, and there is discipline. At home it’s much gentler and much more flexible” (Jennifer).
Chronicles of regression and evolution
Paired with the initial fear of negative developmental implications, there were clear descriptions of regression that had occurred in various fields. However, there were also cases in which evolution, revelation, and progress were apparent.
Functional factors
Many parents talked about the changes their children had in their day-to-day functioning:
My son has a problem. I don’t really know how to explain it. He’s stuck at home and doesn’t do anything. It’s mainly digital media and nothing else. We can’t get him out of it. He started to flap his hands more, and his echolalia worsened. (Carol)
There is an acknowledgment of a problem that is hard to understand or solve.
Another parent illustrated a change in independence:
We noticed that things she used to do she doesn’t do anymore. For example, she used to eat with a spoon, and now she doesn’t. So, we’ll have to teach her again, and the learning process is very intense, it’s simply awful, because she used to eat fantastically. (Jessica)
There is despair from a skill that has been lost, and concern about the time it will take for it to be regained. In contrast, there was a group of children who were able to expand and/or develop their skill set: “I see that now my son is making attempts in his tablet computer game. He does things on a deeper level than what he used to do before” (Mary). The abundance of free time allowed for repetitive attempts that strengthened abilities. Another example relating to time and togetherness was: “I found out that my son learns much better by heart. I discovered that he responds and learns much better when spoken to. He just gets stuff. This surprised me” (Michelle). Spending quality time with the child and became an opportunity for learning new things about him. Since “learning how to learn” is the principal step of the learning process, this could benefit his future.
There were a few examples of an improvement across physical, linguistic, and social domains: “He learned how to ride a bicycle; he learned to talk more and to share. To include us more in his games. To call us” (Kimberly). Or: “My son is amazing! We found out so many things about our children in this lockdown. That they can do much more than what we believed. They cooperate and understand . . . all of us have much more powers than we thought” (Amanda). These new discoveries led to an emotional uplifting.
Social interactions and communication
Parents were concerned over the absence of social interaction due to the lockdown:
The whole problem of children on the spectrum is that they’re not communicative enough. Here [at home], my son doesn’t have the interaction. It’s true that he has his brother, and us, but not other children his age. And that’s his Achilles heel, and it’s not being met right now. (Margaret)
The concern for lack of peer interaction is emphasized by the isolation. This leads to a desire to re-connect to others: “. . . Anything that will let the children have their interactions, because that’s the heart of the matter, these children’s oxygen. Like other people need oxygen to breath, these kids need this interaction time” (Mary). Oxygen is given as a metaphor to communication needs. Parents saw this need, while acknowledging that this is not necessarily experienced by their children: “My son is not a social kid anyway, so I don’t think he feels he is missing anything. He enjoys his solitude and loves to be alone anyway; he loves being at home” (Nancy). Social skills are not being developed, but under the circumstances, the parent follows the child’s lead.
Many special education programs attempted to resolve this issue with meeting virtually. However, the vast majority of children found it hard to handle, lost interest quickly, did not participate, and often stepped away from the screen: “Without any doubt, Adrian’s having difficulty to connect to the idea of the Zoom™ meetings that the kindergarten teacher holds. It’s impossible to recreate a class meetup with Zoom™, it just doesn’t work” (Michael). The challenge to correspond via Zoom™ is intensified in children with deficits in communication skills. Attempts to conduct therapeutic sessions were also unsuccessful for the most part: “You simply cannot do an occupational therapy session over the phone” (Teresa). During this time, there were parents who had a different point of view: “I think he really improved in his speaking abilities. He speaks more. Or we just pay more attention to it, because we’re home with him. That’s the thing that made me the happiest, that his communication ability improved” (Lisa). Time spent together improved the child’s communication skills and enabled the parent to recognize these capabilities in him.
Behavioral attributes
Whether derived from the change of scene, the intense family environment, the confinement, or the imminent fear of a looming disease, many children exhibited various forms of behavioral changes, as in the two following examples: “There are behavioral things that worsened. Like a wild and unruly laughter. A form of a disturbed laughter. He’s lost his judgement, like a person that drank a lot of alcohol . . . It’s like he lost the ability to brake” (Joshua):
My son regressed to being a one-and-a-half-year-old [currently eight-years-old]. He’s much more irritable. I’m afraid he will break the entire house! He started to hit his little sister. He throws things around the house, he took the microwave, spilled stuff on it, threw it on the floor, he hits the television! I only wish that they take him already [back to the educational systems]. (Andrew)
These parents are frightened and frustrated, emphasizing the negative influences on their household. This also has financial implications: “Brook constantly wants to bathe or shower. Our monthly water bill can reach ~200 USD, and it has now worsened. Every two hours he breaks the lock of the bathroom and goes to shower” (Dorothy).
Other parents expressed an experience of growth:
We involve him more in stuff we do at home. We do it together. We ask him to do chores, to clean after himself. So, he is showing more independence in life skills. I think it’s not less important than knowing math. Considering the diagnosis of these children, this is happy news. (Lisa)
Chores were not necessarily done better or faster, but getting the child involved led to good behavior and progress. The new reality is perceived as an achievement.
Coping strategies
As seen above, parents experienced this time differently. Some found this time very frustrating and struggled while others re-adjusted and experienced improvement. This was partially due to the manner by which they coped, presented next.
Accommodation of needs
At first it was difficult and hard for me, I won’t lie. Now it’s better. We internalized this is the reality. We need to protect the children. That’s the most important thing. So, I try to get into his mind and understand him, like, what he really wants. (Lisa)
The mother realized it is up to them, the parents, to prioritize the children’s needs:
All day long he’s involved with numbers, it’s always been his obsession. It’s been 34 days that we’ve been baking numbers from pastry dough, we’ve already reached the number 130. He just organizes them on the dining table by order and by a color code. (Suzan)
Harmony in this household is achieved by the mother’s adjusting to her son’s unique interests.
Exposure to information
Children with high severity levels of ASD were not fully comprehensive of the situation they were in, and mainly reactive to the physical changes that occurred. Those with lower severity levels showed interest. The different parental approaches to the level of news to which these children were exposed affected their eventual outcome. Some parents did everything to spare their children from information:
I prohibit him from watching television. I don’t turn it on during the day, only at night. If I need to get information myself, I send him to another room when I turn the television on. We told him it’s now a Passover (Easter) holiday and that’s it. (Rebecca)
Other parents allowed some knowledge to be transmitted, but made sure it was toned down, focusing on a positive point of view:
I don’t want to explain to my son that there is a virus that is endangering our lives. I don’t know what effect this will have on him, and don’t want him to be stressed. So, I don’t talk about the deep implications of this thing too much. He saw a short animation about Corona and understood he should stay at home. I want to leave it at that. (Margaret)
Information is monitored to reduce fear and anxiety. Other parents believed that control of fears would be achieved upon full exposure to information:
My son understands everything. 100%. He comprehends every small detail. Today he made us be out in the sunlight with our hands exposed because the ministry of health said we need vitamin D. He’s very aware and a bit frightened. He wants to implement all the instructions and he makes sure we do too. (Linda)
Family influences
The family dynamics that changed due to the necessitated togetherness had an important influence on coping and outcome. Some parents experiencing difficulties due to ongoing sibling fighting developed despair: “He annoys his sister on purpose all the time . . . I just want both of them to be taken away from me and put back in the ‘systems’” (Donna).
In other families, sibling rivalry was perceived as a sign of normalcy, allowing the appreciation of its constructive aspects: “There is a difficulty in this time that the children are bored at home and fight more. It’s hard to tolerate all the mess but she really got closer to her little brother. They became better friends than before” (Sandra).
Some parents emphasized how family togetherness brought about positive shifts to the family dynamics:
Being at home with us is a dream for him, two on one, it’s really cool for him. We’re sleeping better, eating better. We even had a breakthrough! He agreed that the three of us go outside together for a walk. Usually he agrees to walk with only one of us. (Michael)
Or: “The positive thing that happened is simply that we are together, which is something that usually doesn’t occur. Both of us are working and we don’t have many hours to be with our children” (Niki). Stopping the rapid pace of life and having time together is appreciated. It is also linked with improvement of abilities: “The more he spends time with his close family (like in family vacations), the bigger leap he makes” (Betty).
Discussion
We conducted in-depth interviews to explore the thoughts, feelings, and experiences of parents of children with autism during the unique period of the COVID-19 pandemic lockdown. Our findings demonstrated that the initial response of parents to the lockdown and its implications were filled with concern. As many of them feared, the difficulties that emerged were principally related to the drastic transition in a population of children who are known to struggle with handling transitions. However, there were families who experienced this period as positive and even beneficial, revealing certain capabilities they had not known their children had. Much of this variety in the ability of the children to cope with the lockdown-related disruption was driven by the parents’ capability to accommodate to their children’s needs, in addition to the parents’ creativity, resourcefulness, and ability to maintain a positive outlook.
Our findings indicated that all of our study participants experienced some kind of concern at the outset of the lockdown. There were concerns of the difficulties ahead and/or of social and/or developmental regression due to the cessation of therapeutic interventions and care. These worries are justifiable, given that the treatment modalities offered for individuals with autism are directed at improving social skills, reducing maladjusted behaviors and other related deficits, and instructing parents and families (DeFilippis & Wagner, 2016; Landa, 2007).
In addition, parents expressed concerns about their own ability to educate and support their children and of potential long-lasting impacts of the lockdown. These concerns resonate with reports that emphasize the importance of providing formal and informal care to the well-being and competency of parents of children with autism (Hall, 2012; Twoy et al., 2007; Wodehouse & McGill, 2009). Moreover, recently published opinion-based articles related to COVID-19 and children with autism suggested ideas that align with our findings; highlighting the importance of the special education services to children with ASD and advising them to maintain close contact with the parents through weekly consultations and/or the provision of a “hotline” that could aid in managing general and COVID-19-related issues that arise (Lim et al., 2020; Narzisi, 2020; Pellicano et al., 2020; Smile, 2020; Yahya & Khawaja, 2020). Interestingly, and contrary to some of these recent publications, the findings in our study indicate that virtual meetings with the children were not tolerated well, further emphasizing the need to direct the attention during these times on instructing parents and improving their competence in applying relevant therapeutic disciplines. Parents who felt proficient during this period managed to alleviate some of the fears.
As the lockdown continued, the difficulties experienced by families were diverse, and they were mainly the result of worsening of difficulties that existed prior to the lockdown. Strict home isolation meant being physically confined to a small space with limited options for movement and the expending of energy. For the majority of the children in our study, this presented a significant challenge, supporting the notion of the prevalent sensory and psychomotor agitation in individuals with autism (Robledo et al., 2012). Many parents expressed the need to provide open sanitized spaces that would be available specifically for children with special needs, or other means by which energy could be released (e.g. a trampoline or a physio ball). Supplying these devices, especially in times of a pandemic in which a lockdown is in place, may be helpful in preventing behavioral regression as seen in some families, such as breaking household items, head banging, and rocking excessively. In addition, providing solutions for these needs may decrease parental frustration (e.g. feeling weary and incompetent, constantly wanting to send the child back to the educational systems).
For the vast majority of children, the drastic change of routine was hard to accept, as is well known in this population (Factor et al., 2016; Souders et al., 2009). In addition to the change of the day-to-day schedule, there was also the challenge of separation from the regular peer group and the confronting of new social settings at home (e.g. two parents present at the same time, the constant presence of siblings). In response, some children exhibited an increase in ritualized behavior and bursts of anger, and a decrease in social motivation and significant sleep disruption. Parents who attempted to restore some form of routine testified that their efforts were partially helpful. Parents who actively chose to not interfere when a child managed to form his or her own adapted routine also reported positive results. Parents who passively accepted the change and lack of routine were the ones who reported the greatest hardship. Supportive of our findings is a recently published study that examined the impact of the COVID-19 outbreak on parents of children with ASD via an online survey, reporting they had difficulties in managing daily structured activities, and as a consequence, behavioral problems of their children were intensified (Colizzi et al., 2020). It follows that guidance should be given to parents in the form of building a routine that should be flexible and individually tailored to the child’s needs in the unique quarantine/home setting formed in a pandemic. This may involve structured and semi-structured activities, and also saving time slots for free play that can alleviate stress (Narzisi, 2020).
Food-related issues were a major source of difficulty. It is known that unusual eating rituals are common in children with autism (Ahearn et al., 2001), but the exaggeration of sensory sensitivities and rigidness around food was likely another expression of anxiety during the lockdown. In addition to potential anxiety from the changes associated with the pandemic, the food provided by parents was different from what many of these children were used to (since many spend most of their day in educational systems). Refusal and selectivity of food could result in severe nutrient deficiencies, exacerbate behavioral issues, lead to financial burdens, and frustrate family interactions (Sharp et al., 2013). The inability to provide the specific food that the child was used to led some families to allow eating unhealthily. Due to the unique food-related difficulties that emerge in times of a pandemic, parental awareness should be increased by healthcare professionals, and guidance should be provided for balancing their child’s diet as much as possible. This may include ways to maximize nourishment from available food items, techniques for offering foods that the child does not usually eat, and treatment with nutritional supplements as needed.
In addition, when formal support was unavailable, parents resorted to informal support which led to some potentially problematic actions. For example, some parents who struggled with their child’s sleep to the point of exhaustion gave sleep medications without consulting a physician first. This could be harmful and warrants attention. Emphasizing the significance of good sleep hygiene, nutrition, and physical activity should not be limited to the children with autism, but also encouraged for their parents/caregivers, to preserve their own general well-being (Yahya & Khawaja, 2020).
Family dynamics had changed in almost every family that participated in our study. These changes included the presence of a parent who is usually absent from home, extensive time shared with a sibling, or separation from grandparents who were normally present. The relationships and interactions between children with and without autism had an effect on the general functioning of the autistic child and the family experience of the lockdown as a whole. As part of the guidance given to families in times of a quarantine/lockdown, special attention should be directed at the family dynamics in terms of attempting to resolve parental/sibling discord and encouraging the social engagement of siblings. These suggestions are also supported by recent publications that underline the importance of time spent together between children with autism and their family members, suggesting that it could help in maintaining social development, reduce maladaptive behavior, and benefit the general adjustment to stress (Lim et al., 2020; Narzisi, 2020; Pellicano et al., 2020).
All the participants in our study group experienced some degree of difficulty. However, the way in which parents coped with these difficulties was perhaps the most determining element that dictated how the children coped with the lockdown. Raising a child with autism is an enormous emotional and physical burden under normal circumstances (Donelan et al., 2002; Parish et al., 2009). Coping with the pandemic and its associated lockdown posed additional demands on these parents. There were parents who “read the map of needs” quickly and responded with creativity and resourcefulness. This also meant freeing up significant portions of time to spend with the child and participate in his or her activities, or making a concerted effort to involve the child in the household tasks and establish family togetherness. In the analysis of our data, it appeared there were parents whose situation at home did not objectively appear to be better than others, but they interpreted it as more positive. Those parents expressed joy from the temporary halting of the “race of life” and from uncovering new abilities in their children. Parents who had a negative outlook on the situation spoke of feeling hopeless and helpless, and in these households, the children subsequently demonstrated worsening of behavior and/or regression. This resonates with the Double ABCX model of family adaptation that discusses the importance of support networks, appraisal, and coping strategies when facing mounting stressors (McCubbin & Patterson, 1983). A similar message related to the importance of appraisal can be obtained from studies that discuss parental reactions to the diagnosis of their child with ASD (Resch et al., 2010; Sanders & Morgan, 1997; Scorgie & Sobsey, 2000; Weiss et al., 2014). According to these studies, a positive outlook along with a cognitive task–oriented approach leads to higher levels of parental well-being and child functioning, as opposed to those who deal with distress by means of denial, escape, and avoidance (Abbeduto et al., 2004; Dabrowska & Pisula, 2010).
It is not entirely understood why certain parents react to challenges differently (Hassall & Rose, 2005), but possible explanations revolve around their inherent traits, unique set of vulnerabilities, past life experiences, set of moral codes, and general worldview (MacPhee et al., 2015). Given that the parental response has a clear impact on the well-being of the child, we believe that in times of crisis, the support provided to families of children with disabilities should be parent-focused as much as it is child-focused. With this in mind, it could be beneficial to use suggestions from studies utilizing the Double ABCX model of family adaptation (mentioned above) on families of children with autism (McStay et al., 2014). These include cognitive behavioral therapy for parents of children with autism, that focuses on challenging their negative beliefs about the current stressful situation, improving their understanding of their child’s disorder in its context, and highlighting the strategies and resources available for parents, such as the strength of the family unit.
Implications for decision-makers and healthcare personnel
The rapid transition that occurred with the emergence of the COVID-19 pandemic has led to the neglect of populations that require special attention. Based on our findings, we advocate the establishment of a policy that will address the needs of children with disabilities and their parents in times of a pandemic or a life disturbance of a similar magnitude. This is in line with the key conclusions of a highly relevant report on individuals with autism in Australia, whose chief aim was to influence current and future governmental policies concerning these issues (Pellicano et al., 2020). As we have learned from the events of this pandemic, children with disabilities, who are already in an “at-risk group” due to their medical and developmental difficulties, are exceptionally vulnerable to upheavals. Identifying the specific needs of each child and his or her parents should be done early on, so that the requirements for providing an optimal environment within the home could be met. Professionals should aim to understand the parent’s subjective appraisal of the situation, their internal capabilities that are already present or need to be developed, and whether there is a gap between parental needs and their available resources. Providing the parents with support and strengthening their abilities to adjust could be especially beneficial in times of extreme life disturbances, as well as during ordinary times, which, for them, are not ordinary.
Limitations of the study
This study is limited by its small sample size and the inclusion of participants who experienced the COVID-19 pandemic under the circumstances that evolved in Israel. Moreover, while our cohort was heterogeneous in terms of the participant’s socioeconomic status, familial situation, and level of ASD severity, it was recruited from a single, large, urban tertiary center. The database of our Child Development Institute dates back to 2010, thus enabling us to access records of children who were admitted from that date onwards, limiting our ability to recruit teenagers with ASD. There was also a scarcity of fathers who participated, making the sample mainly composed of the mothers of children with autism. The study was designed to examine the subjective experiences of parents by means of open-ended questions, which allows for flexibility, but can also create a highly diverse range of responses. While some participants gave detailed and elaborate answers, others were briefer and more generalized.
Conclusion
Our findings serve to broaden the insight into the underlying coping mechanisms of children with autism and their parents in times of a significant negative life event in the form of a pandemic-induced lockdown. The main difficulties encountered by the autistic children were related to the change in routine, lack of special education services, limited physical space, and food- and sleep-related issues. This led to worsening in behavioral, social, and developmental domains in some of the children. In contrast, some children experienced this period as being positive and even beneficial. This difference stemmed mainly from the parents’ manner of coping. An ability to accommodate to the child’s needs, a creative and resourceful problem-solving orientation, and a general positive outlook were the key factors that enabled successful coping. In times of acute life disturbances, programs that are not only child-focused but also parent-focused should be directed at optimizing parental resilience.
Footnotes
Acknowledgements
The authors are appreciative of the families that agreed to share their experiences with us in this challenging time. The authors acknowledge Liat Kidar for her professional transcription service.
Declaration of conflicting interests
The author(s) declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article.
Ethical publication statement
The authors confirm that they have read the Journal’s position on issues involved in ethical publication and affirm that this report is consistent with those guidelines.
Funding
The author(s) received no financial support for the research, authorship, and/or publication of this article.
