Coping with autism during lockdown period of the COVID-19 pandemic: A cross-sectional survey.

BACKGROUND: The coronavirus disease 2019 (COVID-19) pandemic is thought to have greatly impacted families of individuals with autism spectrum disorder (ASD) due to lockdown, given lack of access to healthcare, therapy, and day-care centers. This survey was conducted to understand the magnitude of the impact of lockdown, and its effect on the health and behavior of individuals with ASD and their families.
MATERIALS AND METHODS: We conducted an anonymous online survey, disseminated to families registered with our hospital and collaborating centers. The survey questionnaire collected information on sociodemographic details, details of the patient's and parents' behavior and health during the COVID-19 lockdown, and treatment details of the patient.
RESULTS: A total of 153 families completed the survey. Of the 153, nearly half of the individuals with ASD had an inadequate understanding of lockdown, 54% had increased screen-time, while a third reported new-onset behavioral changes. About 40% received online therapies, of which 85% reported benefits. Of the 132 who answered the parent's section, 55% reported decreased interest and/or pleasure in doing daily activities and 43% felt depressed and/or hopeless. About 80% of families reported short-term positive changes such as improved speech, language skills, and participation in household chores.
CONCLUSION: The COVID-19 pandemic has disrupted routines, triggered behavioral issues in individuals with ASD, and impacted the coping skills of both individuals and families, along with the mental health and well-being of the family. Valuable suggestions to improve therapy services and clinical care using technology have been uncovered and need to be explored. Copyright:

INTRODUCTION

The novel coronavirus disease 2019 (COVID-19), has rapidly spread across the world. Changes in lifestyle due to prolonged lockdown and social distancing are expected to impact the mental health of families in general.[12] Children with autism spectrum disorder (ASD) have social communication deficits, interest in specific and peculiar routines, poor adaptability and rigidity.[3] They have difficulties regulating their behavior when exposed to unusual situations. Those with comorbidities such as Attention Deficit Hyperactivity Disorder (ADHD) and/or Intellectual Developmental Disorder can have even greater challenges in understanding the nature of the suddenly changed situations.[4]

Arguably, the COVID-19 pandemic has been an enormous change of circumstances with minimal anticipation and is expected to have affected families with ASD in various ways.[5] Surveys to determine the nature and extent of the impact of the pandemic on mental health have been reported. Results from a survey by Roy et al. on 662 adults in India showed that there were high levels of anxiety, preoccupation with thoughts about COVID-19, distress due to social media and sleep problems.[6] Surveys on mental health in children have focused on coping with online education more than broad aspects of mental health.[67] Particularly in ASD, the Simons Foundation Powering Autism Research (SPARK) published results of their survey on 8000 families with ASD, finding that social stories, breaks for rest, pursuing hobbies, cooking for the family, and telehealth appointments have helped. Children with ASD reportedly seem to enjoy calmer, less anxious routines with a slower pace of learning while having ample family time.[8]

The pandemic's impact on ASD children in India has not been reported outside of anecdotal sharing in informal fora. It could result in behavioral disturbances and affect biological functions such as sleep and appetite. Disruption of therapy sessions, closure of day-care centers, financial difficulties, parents having to work from home, fear of COVID-19 infection, combined with the stress of responsibilities can all be expected to worsen the context for many.[910]

We conducted this survey to understand the status of children with ASD and family coping methods during the lockdown in April–May 2020. We also explored positive changes in children and successful strategies that have worked for some families. This survey was conducted to design strategies for families who require relevant support.

MATERIALS AND METHODS

The study was conducted in April–May 2020 when India was in a complete nationwide lockdown. Parents of individuals diagnosed with ASD, and individuals staying with one or both parents during the lockdown period were included in the study. Individuals between 2 and 25 years of age were included as this was the age range of individuals registered under the participating centers. Exclusion criteria were parents or the individual with ASD, or any first-degree family member infected with COVID-19 during or before the survey, and families who were not residents of India during the lockdown. Institute Ethics Committee approval was obtained for the study (IEC No. 134/2020).

This cross-sectional closed survey design used an anonymous online questionnaire method. To reach the widest possible numbers within the limited time, we invited participants by sending the survey to 650 families registered in our database along with old and current clients from the databases of our co-investigators. The survey was not disseminated on social media platforms or on any website. The survey was administered through the Google Forms platform. Participants were informed about the aims and objectives of the study and consent was taken. The survey was made accessible only after they submitted voluntary consent. Participants were told the length of time of the survey. The web link for the study was disseminated to all contacts through text messages using the automated bulk messaging system through the Information Technology department of St. John's Medical College Hospital. A reminder to complete the survey was sent using the same platform thrice in the first 1 week and then weekly for 3 weeks. The survey was active from 22nd April to 31st May 2020 (the last day of lockdown in India). There were no incentives for participating in the survey. All data are stored in an anonymized format at the center of the corresponding author for a period of 5 years. At the end of the survey participants were asked to share their E-mail id if they wished to receive a summary of the findings of the survey. This information is accessible only by the investigating team.

The survey questions were developed by the research team which includes experts working in the field of autism for more than 20 years. They also are from five different centers. Based on their expertise, the evolving circumstances and available literature at that point in time, the questionnaire was developed. The responses received, were manually screened by two members of the research team followed by computerized search system functions in Microsoft Excel and IBM Corp. IBM SPSS Statistics for Windows, Version 17. Chicago: IBM Corp; 2008 independently, to ensure there was no duplication or multiple responses.

The survey was divided into four sections

Sociodemographic information, details of the individual's coping with COVID-19, treatment aspects, and parents’ coping with COVID-19. Many questions were based on the adaptive questioning technique. Each section had around 10 questions and the questionnaire were distributed over nine pages including subject information and informed consent. Item list remained the same for all and we did not employ any randomization of questions. Respondents were able to review their answers through the back button before submission. Incomplete questionnaires were also analyzed (if the parent skipped a section, “n” was adjusted accordingly).

Statistical analysis

SPSS Version 17 was used for data coding and analysis. Quantitative data were expressed in mean, standard deviation, and percentages using frequency and descriptive analysis. Comparisons between subgroups were made using t-test. The strength of correlation was analyzed using polychoric correlations with the help of the statistician.

RESULTS

A total of 153 families completed the survey. The results are described below in the four sections mentioned in the methodology.

Section A: Sociodemographic details

Most (90%) respondents (138/153) were from Bengaluru. 125/153 (81%) individuals with ASD were male. Most individuals (70%) were children between 2 and 11 years of age. 67% were nuclear families with parents having finished postgraduation. 57% were families with a single child, 40% with 2 children. About 62% of the children had comorbidities that include ADHD (65/153), learning disability (13/153), anxiety disorder (8/153), oppositional defiant disorder (1/153), and seizure disorder (8/153).

Section B: Details of the child's coping with coronavirus disease 2019

About 59% of individuals with ASD never asked parents about COVID-19 (149/153 children were >3 years of age of which 99/149 could speak more than two-word phrases). 49% had a poor understanding of the concept of lockdown. About 37% of parents opined it was more difficult to maintain a routine with an additional 10% saying that the days had become disorganized. Disorganized meant lack of structure, disrupted routine, behavioral issues interrupting activities, and sleep pattern change. Music, exercise, play-related activities, and visual aids were described by most as being very helpful in engaging with the individual. About 54% had more screen time than usual during the lockdown. 34% had new-onset behavioral problems such as self-injurious behavior, increased stereotypies, and temper tantrums.

Section C: Treatment aspects

About 38% of children were on medication which could be easily procured during the lockdown. Of these, 17 were receiving sodium valproate, 9 risperidone, 5 atomoxetine, 5 fluoxetine, 3 each of aripiprazole, methylphenidate and clonidine and 1 each of levetiracetam, naltrexone, melatonin, and amitriptyline. Fourteen of the 43 children were on more than one medication. We however do not have information on whether there was need to increase the dose or change the medication during the lockdown.

About 80% of the families did not require to contact a psychiatrist or psychologist during the lockdown. Forty-three children were reported to be on medication.

About 40% received online therapies during the lockdown, and 85% of these families reported them to be useful. However, most families also reported that they were unsure about wanting to continue therapy online when the pandemic resolved. Families reported the following as advantages of online therapy: Easy access to a therapist for those families living far, saves more time (absence of the need to commute), children were developing skills to handle gadgets better, helps avoid hospitals and achieve social distancing, and parents could learn and involve better in therapy. The difficulties with online therapy methods reported were: The child being uncooperative, unable to sit for long, exposed to excess screen time, network connectivity issues, unable to meet other families, and build contacts.

Section D: Details of parents coping with coronavirus disease 2019 (answered by 133/153 families)

About 60% of families had parents working from home, mostly 6–8 h a day; most of them reported that this did not impact the child to a great extent. About 10% of parents also attended online training programs such as webinars, parenting workshops, and parent support group discussions.

Nearly 50% had family support as usual. About 40% of families reported that the spouse was involved more than usual, whereas 35% reported that the spouse was involved as much as usual. Questions related to parental mental health revealed around 60% of parents had little interest or pleasure in doing daily activities. 45% of them felt depressed and/or hopeless.

In 87% of families, children were attending schools before lockdown. During the lockdown, 27% of children received school support, as usual, 18% less than usual and 21% received much more than usual. Around 34% reported not have any support from school at all. Services offered by the schools included: Resource material, online classes, regular checks to monitor progress, and counseling sessions.

More than 40% of families had come across resources/reading material for maintaining children during the pandemic, and among them, 60% of families described the resources as being somewhat useful, and 20% as being very helpful. Around 60% of families shared these resources with other families as well. There were no significant differences between groups who received online therapy compared with those who did not get such therapy in terms of behavioral issues (z = −0.304, P = 0.671), positive changes (z = −1.611, P = 0.107), or parent mental health (little pleasure/interest z = −0.237, P = 0.813; depressed or hopeless z = −0.191, P = 0.849).

About 80% of families reported having noticed positive changes in their child during the lockdown. These included learning self-help skills, fewer temper tantrums, learning communication skills, progress in speech and language skills, and participation in household chores, maintaining a routine, following commands, and cooperating better during therapy sessions.

When asked about what sources would be beneficial if made available, parents listed the following: Relevant books, counseling sessions, and workshops for parents, ideas for home-based therapies (based on techniques of play, music, visual aid, worksheets, speech stimulation), home visits by therapists and online classes other than therapy.

Polychoric correlation (at P < 0.05) was conducted to explore variables that had moderate-to-strong correlations. Those with strong correlations include: Those with good language skills had improvement in self-help skills (r = 0.76), those with good self-help skills had better interaction (r = 0.76), children who were going to school regularly had higher behavioral issues (r = 0.89) and were in contact with the psychiatrist (r = 0.86), parents who attended training programs were those who had children going to school (r = 0.79), and parents who attended training programs were those who reported positive changes in the individuals with ASD during the lockdown (r = 0.88). Parents with children who were going to school also read online resources and shared with others (r = 0.96).

Results are summarized in Table 1.

Table 1

Summary of the results

Section A: Sociodemographic details
Survey variables	Findings
Number of subjects: Male/female (total)	125 males/28 females (153 subjects)
Age range in years (percentage of study population)	2-11 years (70%)
	12-25 years (30%)
Comorbidities: Present	62%
Comorbidities: Absent	38%
Number of subjects having comorbidities out of total 153 study subjects:
ADHD	65/153
Learning disability	13/153
Anxiety disorder	8/153
Oppositional defiant disorder	1/153
Seizure disorder	8/153
Section B: Details of the child’s coping with COVID19
Survey questions	Percentage of study subjects
Did not ask about COVID-19	59%
Poor understanding about lockdown	49%
Difficulty in maintaining routine	37%
Routine being entirely disorganised	10%
Increased screen time than usual	54%
New onset behavioural problems	34%
Section C: Treatment aspects
Survey questions	Percentage of study subjects
Children on medication	38%
Families who consulted psychologist/psychiatrist during lockdown	20%
Online therapies received	40%
Families who reported that online therapies were useful	85%
Section D: Details of parents coping with COVID19 (answered by 133/153 families, percentage calculated out of total 133)
Survey questions	Percentage of study subjects
Parents who worked for at least 6-8 hours from home	60%
Parents who attended online training/workshops	10%
Children who attended school before lockdown	87%
Children who received support from schools during lockdown
As usual	27%
Much more than usual	21%
Less than usual	18%
Families who felt online COVID19 - related resources were useful	60%
Families that noticed positive changes in their child	80%

DISCUSSION

The current study showed that individuals with ASD had difficulty understanding the concept of the COVID-19 pandemic and lockdown. Many of them had difficulty in coping with changes in routines and new-onset or worsening of behavioral issues. Our study showed an increase in screen-time during the lockdown. Nearly half the parents in our sample reported feeling depressed and/or hopeless and perceived decreased professional support. On the other hand, many individuals in our survey were doing better than before, due to reduced traveling, exposure to unfamiliar environments and more time spent socializing with family members, at home, at a relaxed self-paced schedule.

About 40% received online therapies, with most of them finding the sessions very useful, time-saving, and easily accessible. Online therapies have been reported as not demonstrating clinical gains in the short term. Despite having to balance their time across working from home and childcare, parents have discovered new ways of engaging with children with ASD. Families however were unsure about continuing with online mode postpandemic, due to increased screen-time and network connectivity issues. Individuals with ASD who had good language skills before the pandemic had improvement in self-help skills and in turn gained social and communication skills and interacted better during the lockdown.

Understanding the concept of lockdown and behavioral issues was similar to a study conducted in Italy.[11] Di Renzo et al. evaluated the families of 63 ASD children during the lockdown, and noted an increase in restricted and repetitive behaviors in 30%, with an increase in sleep disturbance, motor restlessness, irritability, and mood dysregulation, which could be expressions of fear, frustration, and worry. However, they also noted no changes in self-care autonomies, taste-smell sensitivity, and auto/other-directed aggression.[11]

Screen-time is known to be high in individuals with ASD even before the onset of the pandemic, and the lockdown period could have made it difficult to restrict screen time and online activity.[12]

Helplessness and feeling low were similar to the findings of a Serbian study by Stankovic et al.[13] This could be due to unanticipated circumstances and lack of support system to handle the same, which may not imply clinical depression. Difficulties such as managing new onset behavioral problems as a result of increased demands, decreased external support, and absence of respite care during the lockdown have also been reported by others.[714] A Turkish study also showed higher levels of anxiety and lower psychological well-being in parents of autistic children compared to parents of neuro-typical children.[15]

Families reporting positive changes were similar to the survey conducted by SPARK that noted positive experiences during the pandemic, in the form of extra family time, opportunities for a slower pace of learning, and exploration of calming and home-based activities,[16] similar to our sample, where 80% reported positive changes in the form of self-help, communication skills, and lesser temper tantrums. Despite this, a large number of parents reported feeling depressed and/or hopeless. We believe that the families who have chosen to participate in our survey may be much concerned about the future in the absence of interventions and hence experienced a sense of helplessness and sadness. Families who wanted to consult a psychiatrist or procure medications during lockdown did not report any difficulty in getting access. Nevertheless, the result of the closure of day-care centers, special schools, absence of peer-group interaction can result in impairment of social and behavioral skills and lead to regression in skills and also worsening of behaviors such as temper tantrums. In addition conflicts among family members in such situations are also reported.[17]

It is also important to have adequate but monitored access to online time for therapy sessions, support group meetings, and contacts through social networking. Similar results were noted by Provenzi et al., who examined parents’ perceptions of the effectiveness of telehealth programs in 36 children, 11 of whom had ASD, 5 had cerebral palsy, and the rest other psychomotor and cognitive delay conditions. About 80% reported benefits in perceived support, engagement, and continuity of care, while the common challenges reported were internet connection issues, web literacy gaps, and difficulty following instructions given by the therapist, reported by about a quarter of the sample.[18] Such findings add to the growing realization that online interventions need to be rigorously evaluated for efficacy and implementation success.[19]

Studies in the past have shown good speech and language skills predict better outcomes in those with ASD.[202122] The lockdown period probably enabled an increase in quality speech and communication time between parents and individuals with ASD resulting in short-term gains. These individuals are possibly the high-functioning ones. This has implications for training children with ASD in general.

Children going to school regularly before the pandemic showed new-onset behavioral issues during the lockdown, potentially due to sudden unanticipated disruption of routine and structured care similar to other studies.[1123242526] These children were also in contact with the psychiatrist, indicating previously existing behavioral issues and/or better awareness of behavioral issues among parents. These parents also attended training programs and reported positive changes in children, possibly indicating that children going to school regularly also were those with better skills and milder forms of ASD. It appears that those with a diagnosis of ASD, even if functional and going to school, can show marked disturbances in complex situations as during this pandemic. This implies the need for building additional skills even in those who are better functioning. This information, if more reliably ascertained, can help inform families on the need for ongoing interventions despite relative educational success.

Many families reported having been able to maintain a routine with positive changes in individuals with ASD. Similar to our study, Parenteau et al. also found that having a routine, and creating schedules offer parents opportunities to prevent burnout and facilitate quality use of time at home for individuals with ASD.[24] However, the proportion of families following such interventions needs to be increased through appropriate interventions.

A self-selection bias which is intrinsic to an online survey methodology that involves a nonprobability sampling is one of the limitations of this study. We also did not independently confirm the diagnosis reported by parents or the level of severity which could have influenced the type of coping strategies used. We did not collect information of symptom profiles and medications being used. About 72% of our sample included children <12 years and 28% were between 12 and 25 years. Management strategies and challenges faced by these groups can be different and needs further investigation. This survey was conducted in the early period of the COVID pandemic. Different concerns could emerge if this is administered at a later time point. The study predominantly captures data from urban settings. Families outside of Bangalore with resource limitations may have problems that differ from what we report here. Furthermore, we do not have information of whether the father or the mother filled the survey. This could influence the response received. However, we believe this survey gives us the first impressions on the impact of the pandemic on individuals with ASD and how lockdown affected their families in India.

CONCLUSION

The COVID-19 pandemic has disrupted routines, triggered behavioral issues in individuals with ASD, and impacted the coping skills of both individuals and families, and their mental health and well-being. Online delivery of therapy and other clinical services has gained considerable momentum and is seemingly effective in many of those who had access to them. Increasing access to online means of continuity of care, conducting workshops about home-based therapies, supportive sessions, and providing resource materials, and home visits by the therapist when feasible are the felt needs by families.

Financial support and sponsorship

Nil.

Conflicts of interest

There are no conflicts of interest.