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International Journal of Developmental Disabilities logoLink to International Journal of Developmental Disabilities
. 2021 May 26;68(6):943–955. doi: 10.1080/20473869.2021.1930827

Those in the shadow of the pandemic: impacts of the COVID-19 outbreak on the mental health of children with neurodevelopmental disorders and their parents

Baris Guller 1,✉, Ferhat Yaylaci 1, Damla Eyuboglu 2
PMCID: PMC9788683  PMID: 36568626

Abstract

This study aimed to investigate the emotional and behavioral responses of children with neurodevelopmental disorders and their parents during the recent novel coronavirus disease (COVID-19) pandemic and the associated factors. Our study included 299 children and adolescents with neurodevelopmental disorders and 299 mothers or fathers. Participant groups were as follows: autism spectrum disorder (n = 131, 43.8%); intellectual disability (n = 103, 34.4%); specific learning disorder (n = 46, 15.4%); and communication disorder (n = 19, 6.4%). A data form was created to investigate the emotional, behavioral, sleep problems, and appetite changes of the cases, and it was adapted for online application and conveyed to the parents in the form of emails. Our study indicated that children and adolescents’ emotional problems were 44.5%, behavioral problems 33.4%, sleep problems 65.2%, and appetite problems 32.4%. Irritability (35.5%), hyperactivity (37.8%), stereotyped behavior (29.8%), delayed sleep phase (51.5%) were the most common problems reported by the parents. The frequencies of emotional and behavioral problems in the ASD group were higher than in the other groups (p < .05). In addition, the Hospital Anxiety Depression Scale (HADS) was used to determine the parents’ anxiety and depression symptoms. Mean HADS anxiety and depression scores of parents were 8.5 ± 4.3 and 7.8 ± 4.2, respectively. Our study demonstrated that the COVID-19 pandemic and lockdown negatively affected children with neurodevelopmental disorders and their parents in many areas. It is necessary that these children and their families are evaluated and supported by local professionals, as the ongoing pandemic can exacerbate the current challenges. The findings of our study reflect the early period of the pandemic. For this reason, longitudinal studies about the long-term consequences of the pandemic are needed.

Keywords: COVID-19, pandemic, neurodevelopmental disorder, autism spectrum disorder, mental health

Introduction

The recent novel coronavirus disease (COVID-19) is a novel coronavirus isolated from patients with unexplained pneumonia from Wuhan, China, in December 2019 (Zhu et al. 2020). The World Health Organization (WHO) declared this outbreak to be a ‘pandemic’ on 11 March 2020. As part of the fight against COVID-19, many governments have taken measures to restrict human mobility. Turkey is one of the numerous countries that have implemented such measures, including the closure of schools and the enactment of curfews. This implementation results in children staying at home for a prolonged period of time as well as in a restriction on their physical activities and social interactions with classmates and teachers. Considering the period in which this study's data were collected, longer than a month had passed since these restrictions and the restrictions were still in place.

Studies evaluating the effects of the ongoing COVID-19 pandemic and the measures taken due to this pandemic on mental health have mentioned the negative impacts on mental health. In a study conducted with 1143 parents in Italy and Spain, 85.7% of the parents reported that their children experienced emotional and behavioral changes with closure during the Covid-19 pandemic period. In this study, it was stated that the most frequent symptoms were difficulty concentrating (76.6%), boredom (52%), irritability (39%), restlessness (38.8%), nervousness (38%), feelings of loneliness (31.3%), uneasiness (30.4%), and worries (30.1%) (Orgiles et al. 2020). Another study has indicated that parents had greater mental responses to disasters than those with less caring responsibilities (Russell et al. 2020). Zhang et al. (2020) emphasized that the effects of Covid-19 were less physically seen in children, but parents were extremely anxious for their children.

Autism spectrum disorder (ASD), intellectual disability (ID), specific learning disorder (SLD), and communication disorders (CD) are common neurodevelopmental disorders in children (D’Souza and Karmiloff-Smith 2016). It is also important to investigate how these children and their parents are affected by the Covid-19 pandemic as they are a more vulnerable group. Because it is known that these children suffer from more mental symptoms (sleep problems, anxiety, and compulsive behaviors) than their peers with typical development even in ordinary times (Rzepecka et al. 2011). Besides, it has been shown that parents of children with neurodevelopmental disorders are at risk for depression and anxiety (Scherer et al. 2019). In a study investigating the effects of Covid-19 on children with special educational needs and disabilities and their families, fear of loss, anxiety, changes in mood and behavior were reported in both parents and children. In the same study, parents stated that they felt overwhelmed, which had a negative effect on their awareness and understanding of their children (Asbury et al. 2021).

In a recent study comparing the well-being and family functioning of children during the Covid-19 pandemic in two groups with typical development and risk of neurodevelopmental disorders, a decrease in family functioning and children's well-being was reported in both the groups. However, in the neurodevelopmental disorder group, compared to those with typical development, fear of being infected with Covid-19, distress due to homeschooling, and parents' concerns about children's academic achievements were reported at a higher rate (Ehrler et al. 2021). Additionally, in a study investigating the effects of the Covid-19 pandemic on children with neurodevelopmental disorders, it was indicated that destructive behaviors were more frequent and severe during this period (Colizzi et al. 2020). In another study, it was found that the parents of these children were more prone to depression and anxiety as they faced difficulties in structuring their children's daily activities, especially their leisure time (Wang et al. 2021).

The aim of this study was to investigate the impacts of Covid-19 pandemic and the measures taken during pandemic on mental health in children with neurodevelopmental disorders. In addition, the other aim was to investigate anxiety and depression symptoms of the parents, as well as the associated factors.

Methods

Participants

The sample consists of children and adolescents with neurodevelopmental disorders (autism, intellectual disability, specific learning disorder, communication disorder) aged between 2 and 18 years (mean: 10.32 ± 4.57 years). This study included children and adolescents who had been diagnosed with neurodevelopmental disorders according to DSM 5 in the child and adolescent psychiatry department and who had received special education before the Covid-19 pandemic. The children having a neurological disease or genetic disease were not included in the study.

The questionnaires were filled out by 309 parents; 10 parents who filled out the survey twice were excluded from the study. Eighty-six (86) (28.8%) females and 213 (71.2%) males were included in the study. Of the parents participating in the study, 247 (82.6%) were mothers and 52 (17.4%) were fathers. The parents were aged between 22 and 65 years (mean: 39.52 ± 7.17 years). Considering all parents, 42.5% (n = 127) were primary education and below, while the ratio of parents with primary education and below (30.5%, n = 40) in the ASD group was higher compared to other neurodevelopmental disorders groups (p < .01).

Procedure

The authors developed a questionnaire concerning the sociodemographic characteristics as well as the emotional, behavioral, sleep, and appetite problems of the children with neurodevelopmental disorders. Additionally, some of the questions were created as ‘compared to pre-pandemic situations’, since the study was cross-sectional and the pre-pandemic data were not available. (Has your child’s sleep routine been changed compared to pre-pandemic?, etc.) Parental anxiety and depression were assessed using the Hospital Anxiety Depression Scale (HADS). The two measurement tools were adapted for online application and conveyed to the parents via emails or messages.

The study was granted ethical approval by the Osmangazi University Faculty of Medicine Non-Interventional Clinical Research Ethics Committee, in accordance with the principles of the Declaration of Helsinki (approval date: 05.05.2020, no: 02).

Electronic informed consent was obtained from all parents. Data collection started after WHO declared the COVID-19 outbreak a pandemic and was performed between 18–30 April 2020. When data collection started on 18 April 2020, the number of COVID-19 cases in Turkey was 82,329, and the number of deaths was 1890. When data collection was concluded on 30 April 2020, the number of COVID-19 cases in Turkey 120,204, and the number of deaths was 3174 (Turkish Ministry of Health).

Tools

Sociodemographic form and COVID-19 pandemic-related characteristics

The questionnaire investigated sociodemographic characteristics as well as education and extracurricular activity participation of the children before the pandemic; the beliefs and attitudes of the parents regarding the pandemic; and the emotional, behavioral, sleep, and appetite problems of the children.

Hospital anxiety and depression scale (HADS)

The scale was developed by Zigmond and Snaith (1983) to determine a patient’s risk of developing anxiety and depression and to measure their severity (Zigmond and Snaith 1983).The validity and reliability of the Turkish version were investigated by Aydemir et al. (1997). The anxiety and depression scores can be interpreted as high risk for anxiety and depression disorders, above 10 and 7 points, respectively (Aydemir et al. 1997)

Data analysis

Data were uploaded to and analyzed using SPSS version 23.0 (IBM SPSS Statistics for Windows, Version 23.0. Armonk, NY). Student's t test was used for the pairwise comparison of the mean values of the normally distributed numerical data, the non-parametric Mann–Whitney U test was used for the non-normally distributed data and the one-way ANOVA was used to compare four groups: ASD, ID, SLD, CD. Categorical variables were evaluated using Pearson's chi-square and Fisher's exact tests. The correlation between normally distributed variables was evaluated using Pearson's correlation analysis and the non-normally distributed variables were evaluated using Spearman's correlation analysis. Factors affecting behavioral and emotional problems were determined using multiple logistic regression analysis. A p value of <.05 was accepted to be statistically significant.

Results

Of the 299 participants, 247 (82.6%) were mothers and 52 (17.4%) were fathers. The parents participating in the study were aged between 22 and 65 years (mean: 39.52 ± 7.17 years). The neurodevelopmental disorder groups were as follows: ASD, 131 (43.8%); ID, 103 (34.4%); SLD, 46 (15.4%); and CD, 19 (6.4%).

The ASD group was significantly different in terms of number of male participants (84.0%, n = 111) (p < .001), participating in extracurricular activities before the outbreak (55%, n = 72) (p < .01), emotional (64.1%, n = 84) (p < .05), and behavioral (77.1%, n = 101) (p < .01) problems that emerged during the outbreak and being informed about the presence of the pandemic (61.1%, n = 80) (p < .001). On the other hand, the SLD group was significantly more likely to receive online education during the pandemic (71.7%, n = 33) compared to the other groups (Table 1).

Table 1.

Characteristics of neurodevelopmental disorder groups in terms of sociodemographic variables and items of the questionnaire.

  Total ASD ID SLD CD
Total 299 131 (43.8) 103 (34.4) 46 (15.6) 19 (6.4)
Age of the childa 10.32 (±4.57) 10.31 (±4.32) 9.85 (±5.36) 11.21 (±2.85) 10.89 (±5.07)
Age of the parenta 39.52 ± 7.17 39.7 (±6.8) 38.3 (±7.8) 40.6 (±5.6) 41.8 (±7.9)
Gender (child)b Female 86 (28.8%) 20 (16.0%) 42 (40.8%) 21 (45.6%) 3 (15.7%)
Male 213 (71.2%) 111 (84.0%)*** 61 (59.2%) 25 (54.4%) 16 (84.3%)
Person filling out the surveyb Mother 247 (82.6%) 112 (85.5%) 84 (81.6%) 36 (78.3%) 15 (78.9%)
Father 52 (17.4%) 19 (14.5%) 19 (18.4%) 10 (21.7%) 4 (21.1%)
Education statusb Elementary school or lower 127 (42.5%) 40 (30.5%)** 48 (46.6%) 26 (56.5%) 13 (68.4%)
High school 91 (30.4%) 47 (35.9%) 29 (28.2%) 13 (28.3%) 2 (10.5%)
University 81 (27.1%) 44 (33.6%) 26 (25.2%) 7 (15.2%) 4 (21.1%)
Marital statusb Married 269 (90%) 119 (90.8%) 89 (86.4%) 43 (93.5%) 18 (94.7%)
Divorced, separated, or widowed 30 (10%) 12 (9.2%) 14 (13.6%) 3 (6.5%) 1 (5.3%)
Has anyone in your family or close contacts been diagnosed with COVID-19?b Yes 20 (6.7%) 8 (6.1%) 8 (7.8%) 2 (4.3%) 2 (10.5%)
No 279 (93.3%) 123 (93.9%) 95 (92.2%) 44 (95.7%) 17 (89.5%)
Did your child attend formal education before the pandemic?b Yes 258 (86.3%) 111 (84.7%) 84 (81.6%) 45 (97.8%) 18 (94.7%)
No 41 (13.7%) 20 (15.3%) 19 (18.4%) 1 (2.2%) 1 (5.3%)
Did your child receive special education before the pandemic?b Yes 285 (95.3%) 123 (93.9%) 99 (96.1%) 45 (97.8%) 18 (94.7%)
No 14 (4.7%) 8 (6.1%) 4 (3.9%) 1 (2.2%) 1 (5.3%)
Did your child receive any online education during the pandemic?b Yes 129 (43.1%) 47 (35.9%) 40 (38.1%) 33(71.7%)*** 9 (47.4%)
No 170 (56.9%) 84 (64.1%) 63 (61.2%) 13 (28.3%) 10 (52.6%)
Did you have difficulty in caring for your child during the pandemic?b Yes 193 (64.5%) 90 (68.7%) 68 (66%) 23 (50%) 7(36.8%)
No 106 (35.5%) 41 (31.3%) 35 (34%) 23 (50%) 12 (63.2%)
Did your child know about the pandemic?b Yes 213 (71.2%) 80 (61.1%)*** 70 (68.0%) 46 (100%) 17 (89.5%)
No 86 (28.8%) 51 (38.9%) 33 (32.0%) 0 (0%) 2 (10.5%)
Did your child participate in any activities before the pandemic (e.g. sports, music, arts)?b Yes 131 (43.8%) 72 (55.0%)** 36 (35%) 18 (39.1%) 5 (26.3%)
No 168 (56.2%) 59 (45%) 67 (65%) 28 (60.9%) 14 (73.7%)
Did your child experience any emotional problems during the pandemic (e.g. unhappiness, anxiety, irritability, social withdrawal)?b Yes 133 (44.5%) 84 (64.1%)* 53 (51.5%) 20 (43.5%) 9 (47.4%)
No 166 (55.5%) 47 (35.9%) 50 (48.5%) 26 (56.5%) 10 (52.6%)
Did your child experience any behavioral problems during the pandemic (e.g. hyperactivity, stereotyped behavior, tantrums, harmful behavior, inappropriate sexual behavior)?b Yes 100 (33.4%) 101 (77.1%)** 63 (61.2%) 27 (58.7%) 8 (42.1%)
No 199 (66.6%) 30 (22.9%) 40 (38.8%) 19 (41.3%) 11 (57.9%)
Did your child experience any sleep problems during the pandemic (e.g. delayed sleep phase, dyssomnia, not being able to sleep alone)?b Yes 195 (65.2%) 82 (62.6%) 64 (62.1%) 36 (78.3%) 13 (68.4%)
No 104 (34.8%) 49 (37.4%) 39 (37.9%) 10 (21.7%) 6 (31.6%)
Did your child experience any appetite problems during the pandemic (e.g. increased or decreased appetite)?b Yes 97 (32.4%) 44 (33.6%) 35 (34.0%) 13 (28.3%) 5 (26.3%)
No 202 (67.6%) 87 (66.4%) 68 (66.0%) 33 (71.7%) 14 (73.7%)
HADS anxiety score above the cut-off valueb Yes 112 (37.5%) 56 (42.7%) 37 (35.9%) 10 (21.7%) 9 (47.4%)
No 187 (62.5%) 75 (57.3%) 66 (64.1%) 36 (78.3%) 10 (52.6%)
HADS Depression score above the cut-off valueb Yes 182 (60.9%) 84 (64.1%) 59 (57.3%) 26 (56.5%) 13 (68.4%)
No 117 (39.1%) 47 (35.9%) 44 (42.7%) 20 (43.5%) 6 (31.6%)
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ASD, autism spectrum disorder; ID, intellectual disability; SLD, specific learning disorder; CD, communication disorder.

a

One-way ANOVA.

b

Chi-square test.

*

p < .05.

**

p < .01.

Parents were asked whether there was any change in the emotional state of their child during the Covid-19 pandemic. Options such as ‘no change, irritability, unhappiness, anxiety, social withdrawal, and other’ were given among the items and parents could mark one or more items. As reflected in the data, 44.5% (n = 133) of all children and adolescents suffered from at least one emotional symptom during the pandemic. Irritability and unhappiness were the most common emotional symptoms, both for the entire sample (irritability: 35.5%, n = 106; unhappiness: 23.1%, n = 69) and subgroups (Table 2).

Table 2.

Emotional and behavioral problems, vegetative symptoms, and pandemic knowledge of children with neurodevelopmental disorders.

    Total
n (%)		 ASD
n (%)		 ID
n (%)		 SLD
n (%)		 CD
n (%)
Emotional problems Irritability 106 (35.5) 53 (40.45) 32 (31.1) 15 (32.6) 6 (31.6)
Unhappiness 69 (23.1) 35 (26.7) 20 (19.4) 10 (21.7) 4 (21.0)
Anxiety 42 (14.0) 27 (20.6) 7 (6.8) 6 (13.0) 2 (10.5)
Social withdrawal 51 (17.1) 24 (18.3) 20 (19.4) 6 (13.0) 2 (10.5)
Introversion 37 (12.4) 18 (13.7) 9 (8.7) 6 (13.0) 4 (21.0)
Behavioral problems Hyperactivity 119 (37.8) 61 (46.6) 38 (36.9) 16 (34.8) 4 (21.0)
Stereotyped behavior 89 (29.8) 66 (50.4) 15 (14.6) 5 (10.8) 3 (15.8)
Tantrums 87 (29.1) 47 (35.9) 25 (24.3) 10 (21.7) 5 (26.3)
Self-harming behavior 23 (7.7) 21 (16.0) 6 (5.8) 2 (4.3) –
Harming others 29 (9.7) 11 (8.4) 8 (7.8) 2 (4.3) 2 (10.5)
Damaging objects 27 (9.0) 14 (10.7) 11 (10.7) 1 (2.1) 1 (5.3)
Inappropriate sexual behavior 17 (5.7) 14 (10.7) 3 (2.9) – –
Sleep problems Delayed sleep phase 154 (51.5) 65 (49.6) 61 (59.2) 31 (67.4) 12 (63.1)
Dyssomnia 72 (24.1) 37 (28.2) 22 (21.3) 10 (21.7) 3 (15.8)
Insomnia 49 (16.4) 26 (19.8) 18 (17.5) 5 (10.9) 3 (15.8)
Not being able to sleep alone 43 (14.4) 16 (12.2) 12 (11.6) 9 (19.6) 4 (21.0)
Advanced sleep phase 31 (10.4) 12 (9.2) 17 (16.5) 4 (8.7) 1 (5.3)
Frequent nocturnal awakenings 31 (10.4) 12 (9.2) 12 (11.6) 4 (8.7) 1 (5.3)
Not wanting to sleep in their own bed 22 (7.3) 5.3 (3.8) 8 (7.8) 6 (13.0) –
Bed-wetting 9 (3.0) 3 (2.3) 5 (4.8) 1 (2.2%) –
Nightmares 9 (3.0) 1 (0.8) 1 (1.0) 3 (6.5) –
Appetite problems Increased appetite 71 (23.7) 35 (26.7) 23 (22.3) 9 (19.6) 4 (21.1)
Decreased appetite 26 (8.7) 9 (6.9) 12 (11.6) 4 (8.7) 1 (5.3)
Source of information when informing the child about the pandemic Information from TV 171 (57.2) 62 (47.3) 52 (50.5) 40 (86.9) 17 (89.5)
Information from the Internet 100 (33.4) 35 (26.7) 32 (31.0) 17 (36.9) 6 (31.6)
Information from social media 93 (31.1) 33 (25.2) 33 (32.0) 18 (39.1) 9 (47.4)
With the help of the teacher of the child 31 (10.4) 13 (9.9) 13 (12.6) 5 (10.9) –
With help from a psychiatrist and/or psychologist 13 (4.3) 7 (5.3) 5 (4.8) 1 (2.1) –
Other 8 (2.6) 7 (5.3) 5 (4.8) – –
Measures taken to prevent the child from being affected by the process Telling them that they are safe 148 (49.5) 65 (49.6) 47 (45.6) 26 (56.5) 11 (57.9)
Not talking about the pandemic near the child 140 (46.8) 62 (47.3) 47 (45.6) 22 (47.8) 9 (47.3)
Mentioning that the measures in effect are sufficient 96 (32.1) 37 (28.2) 28 (27.1) 20 (43.5) 11 (57.9)
Not letting the child watch the news 78 (26.1) 30 (22.9) 31 (30.1) 11 (23.9) 6 (31.6)
Hiding facts 60 (20.1) 28 (21.4) 21 (20.4) 8 (17.4) 2 (10.5)
Not allowing the child to watch videos 47 (15.7) 21 (16.0) 18 (17.5) 5 (23.0) 3 (15.8)
The child is not aware of the pandemic 26 (8.7) 13 (9.9) 13 (12.6) – –
  Sharing pandemic-related developments 63 (21.1) 24 (18.3) 22 (12.3) 12 (26.0) 5 (26.3)
Activities in which the child participated before the pandemic n (%)  Sports 71 (23.7) 42 (32.0) 15 (14.6) 11 (23.9) 3 (15.8)
Music 51 (17.1) 29 (22.1) 15 (14.6) 6 (13.0) 1 (5.3)
Arts 34 (1.4) 13 (9.9) 14 (13.4) 6 (13.0) 1 (5.3)
Swimming 32 (10.8) 23 (17.5) 8 (7.8) 1 (2.1) –
Horse riding 13 (4.3) 10 (7.6) 3 (2.9) – –
Other 10 (3.3) 9 (6.9) – – 1 (5.3)
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***p < .001.

Additionally, parents were asked whether there was an increase in their child's behavioral problems during the Covid-19 pandemic. Options such as ‘no change, hyperactivity, stereotyped behavior, tantrums, self-harming behavior, harming others, damaging objects, inappropriate sexual behavior, and other’ were given and parents could mark one or more items. As reflected in the data, 33.4% (n = 100) of all parents reported behavioral problems during the pandemic. Hyperactivity (37.8%, n = 119) and repetitive/stereotyped behaviors (29.8%, n = 89) were the problems most frequently identified by the parents. However, in all of the subgroups except ASD, the second most frequently reported problem was tantrum; in the ASD subgroup, repetitive/stereotyped behavior was the second most common behavioral problem (Table 2).

Sleep problems were reported in 65.2% (n = 195) of all children and adolescents with neurodevelopmental disorders. Delayed sleep phase and dyssomnia were the most frequently reported sleep problems both for all participants (delayed sleep phase: 51.50%, n = 154; dyssomnia: 24.1%, n = 72) and for each subgroup (Table 2).

Appetite changes were present in 32.4% (n = 97) of all children and adolescents with neurodevelopmental disorders, and most commonly presented as an increased appetite (23.7%, N = 71). Similarly, for each subgroup, an increased appetite was the most frequently reported appetite change (Table 2).

Pandemic knowledge of the children and associated factors

Parents were asked ‘Did your child know about the pandemic?’ It was reported that 71.2% (n = 213) of all children and adolescents were informed about the pandemic by their parents (Table 1). The ASD group was the least likely to be informed about the pandemic compared to other neurodevelopmental disorder groups (61.1%, n = 80).

The most frequent sources of information for the parents regarding how to inform their child about the pandemic were the television (57.2%, n = 171) and the Internet (33.4%, n = 100). The most common methods to mentally protect the children were to tell them that they were safe (49.5%, n = 148) and to not talk about the pandemic when the child was around (46.8%, n = 140) (Table 2).

In our study, we also examined the relationship between children and adolescents being informed about pandemic and their emotional, behavioral, sleep, and appetite problems. The children's knowledge of the pandemic was significantly associated with behavioral problems (p = .036), but not with emotional, sleep, or appetite problems (p > .05). For all children and adolescents that were not informed about the ongoing pandemic, 75.6% (n = 65) showed behavioral problems (hyperactivity, stereotyped behavior, tantrums, self-harming behavior, harming others, damaging objects, inappropriate sexual behavior and other) and 24.4% (n = 21) did not.

Education of children with neurodevelopmental disorders before and during the pandemic and associated factors

We investigated the association between attending formal education before the pandemic and emotional, behavioral, sleep, and appetite changes, and did not find a significant association other than that related to appetite changes (emotional, behavioral, sleep problems: p > .05; appetite changes: p = .024). When we performed this chi-square analysis for each subgroup, we found a significant association between attending formal education before the pandemic and emotional and behavioral individual problems in the ASD group (p < .05). For ASD participants who attended formal education before the pandemic, the prevalences of emotional and behavioral problems were 59.5% (n = 66) and 73.9% (n = 82), respectively.

In this study, we also evaluated the relation between receiving special education before the pandemic and emotional, behavioral, sleep, and appetite problems. No significant relation (p > .05) was found, as was the case when each subgroup was analyzed individually (p > .05).

We also evaluated the relationship between receiving online education during the pandemic and emotional, behavioral, sleep, and appetite changes. While online education was significantly associated with emotional (p < .05) and behavioral (p = .001) problems, it was not significantly associated with sleep and appetite problems (p > .05). For all participants, the prevalences of emotional and behavioral problems in children and adolescents who received online education were 47.3% (n = 61) and 56.6% (n = 73), respectively, whereas these rates were 61.8% (n = 105) and 74.1% (n = 126) for participants that did not receive online education (Table 3).

Table 3.

The relationship between distance learning and the emotional, behavioral, sleep, and appetite problems of children with neurodevelopmental disorders during the pandemic.

  Did your child receive any online education during the pandemic?
 Total n (%) p
Yes n (%) No n (%)
Emotional problems Yes 61 (47.3) 105 (61.8) 166 (55.5) .013
No 68 (52.7) 65 (38.2) 133 (44.5)
Total n (%) 129 (100) 170 (100) 299 (100)  
         
Behavioral problems Yes 73 (56.6) 126 (74.1) 199 (66.6) .001
No 56 (43.4) 44 (25.9) 100 (33.4)
Total n (%) 129 (100) 170 (100) 299 (100)  
         
Sleep problems Yes 87 (67.4) 108 (63.5) 195 (65.2) .482
No 42 (32.6) 62 (36.5) 104 (34.8)
Total n (%) 129 (100) 170 (100) 299 (100)  
         
Appetite problems Yes 40 (31.0) 57 (33.5) 97 (32.4) .645
No 89 (69.0) 113 (66.5) 202 (67.9)
Total n (%) 129 (100) 170 (100) 299 (100)  
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The ASD group was the least likely to receive online education during the pandemic compared to the other subgroups (64.1%, n = 84). Besides, there was no significant relationship between online education and emotional, behavioral, sleep, and appetite problems in the ASD group (p > .05).

Participation of children with neurodevelopmental disorders in activities before the pandemic and associated factors

We investigated the relationship between participating in extracurricular activities before the pandemic and emotional, behavioral, sleep, and appetite problems. The correlation analysis revealed a significant positive correlation between the number of extracurricular activities before the pandemic and the children's emotional (rho: 0.132, p < .05) and behavioral problems (rho: 0.136, p < .05) observed during the pandemic. The ASD group was the most likely (55.0%, n = 72) to participate in any extracurricular activities before the pandemic compared to the other groups. Therefore, we statistically analyzed data from the ASD group separately. However, there was no statistical significance between participating in any extracurricular activity before the pandemic and emotional, behavioral, sleep, and appetite problems (p > .05).

Parental anxiety and depression scores and associated factors

In our study, the mean HADS anxiety score was 8.5 ± 4.3, and the mean HADS depression score was 7.8 ± 4.2; 60.9% and 37.5% of parents reported above the cut-off scores of depression and anxiety, respectively. Each subgroup was not statistically different in terms of scoring above the cut-off value for HADS anxiety or HADS depression (p > .05).

We also investigated the correlation between scoring above HADS anxiety and depression cut-off values and the emotional, behavioral, sleep, and appetite problems of children with neurodevelopmental disorders. We found a statistically significant relationship between scoring above HADS anxiety cut-off values and all symptoms. This statistical significance was strong for emotional, behavioral, and appetite problems (emotional problem: p < .001; behavioral problem: p < .001: appetite problem: p < .001; sleep problem: p = .025) (Table 4).

Table 4.

Relationship between parental anxiety and depression and the emotional, behavioral, sleep, and appetite problems of children with neurodevelopmental disorders during the pandemic.

  HADS anxiety (parent)
 Total n (%) p
Yes n (%) No n (%)
Emotional problems Yes 82 (73.2) 84 (44.9) 166 (55.5) <.001
No 30 (26.8) 103 (55.1) 133 (44.5)
Total n (%) 112 (100) 187 (100) 299 (100.0)  
 
Behavioral problems Yes 96 (85.7) 103 (55.1) 199 (66.6) <.001
No 16 (14.3) 84 (44.9) 100 (33.4)
Total n (%) 112 (100) 187 (100) 299 (100.0)  
 
Sleep problems Yes 82 (73.2) 113 (60.4) 195 (65.2) .025
No 30 (26.8) 74 (39.6) 104 (34.8)
Total n (%) 112 (100) 187 (100) 299 (100.0)  
 
Appetite problems Yes 53 (47.3) 44 (23.5) 97 (32.4) <.001
No 59 (52.7) 143 (76.5) 202 (67.6)
Total n (%) 112 (100) 187 (100) 299 (100.0)  
 
  HADS depression (parent)
   
Yes n (%)
No n (%)
Total n (%)
p
Emotional problems Yes 119 (65.4) 47 (40.2) 166 (55.5) <.001
No 63 (34.6) 70 (59.8) 133 (44.5)
Total n (%) 182 (100) 117 (100) 299 (100.0)  
 
Behavioral problems Yes 138 (75.8) 61 (52.1) 199 (66.6) <.001
No 44 (24.2) 56 (47.9) 100 (33.4)
Total n (%) 182 (100) 117 (100) 299 (100.0)  
 
Sleep problems Yes 126 (69.2) 69 (59.0) 195 (65.2) .069
No 56 (30.8) 48 (41.0) 104 (34.8)
Total n (%) 182 (100) 117 (100) 299 (100.0)  
 
Appetite problems Yes 73 (40.1) 24 (20.5) 97 (32.4) <.001
No 109 (59.9) 93 (79.5) 202 (67.6)
Total n (%) 182 (100) 117 (100) 299 (100.0)  
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Similarly, scoring above the HADS depression cut-off value was significantly associated with emotional (p < .001), behavioral (p < .001), and appetite (p < .001) problems in whole groups, but not with sleep problems (p > .05) (Table 4).

We investigated the association between depression and anxiety scores and the emotional, behavioral, sleep, and appetite problems for each subgroup. We found a significant relation between scoring above the HADS depression and anxiety cut-off values and appetite problems only in the ID group (p < .05). In the ID group, 54.1% (n = 20) of the parents who scored above the cut-off value of HADS anxiety reported an appetite problem in their child, but only 22.7% (n = 15) of the parents who scored below the cut-off value reported this problem. Furthermore, for the ID group, 44.1% (n = 26) of the parents who scored above the cut-off value of HADS depression reported an appetite problem in their child, but only 20.5% (n = 9) of the parents who scored below the cut-off value did so.

Correlations between parents' emotional problems and children's emotional and behavioral problems

There was a statistically significant relationship between the parents' emotional problems and children's emotional, behavioral, and sleep problems, and parents' child care difficulties (Table 5).

Table 5.

Correlations between emotional problems of parents and emotional and behavioral problems of children.

  HADS/anxiety subscale (parent) HADS/depression subscale (parent) Behavioral problems of the child Emotional problems of the child Sleep problems of the child Difficulties faced by the parent in childcare during the pandemic
HADS/anxiety subscale (parent) rho            
HADS/depression subscale (parent) rho            
Behavioral problems of the child rho .341** .307**        
Emotional problems of the child rho .335** .322** .583**      
Sleep problems of the child rho .180* .155* .395** .350**    
Difficulties faced by the parent in childcare during the pandemic rho .378** .373** .408** .354** .226**  
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Spearman's correlation analysis.

*

p < .01.

**

p < .001.

Risk factors associated with children's emotional and behavioral problems

Factors affecting the behavioral and emotional problems of the children were analyzed using logistic regression analysis. We determined the parents’ difficulties in caring for the child (OR, 0.46; 95% CI, 0.26–0.79; p < .01) and the disruption of the child's sleep routine (OR, 2.73; 95% CI, 1.5–4.7; p < .001) to be factors associated with children's emotional problems.

Moreover, we determined parental anxiety (OR, 0.36; 95% CI, 0.17–0.75; p < .01), disruption of the child's sleep routine (OR, 4.07; 95% CI, 2.2–7.2; p < .001), and parental difficulties in caring for the child (OR, 0.43; 95% CI, 0.24–0.78; p < .01) to be factors associated with children's behavioral problems.

Discussion

In our study, we evaluated the emotional and behavioral outcomes of the COVID-19 pandemic and the subsequent measures taken in Turkey for children with neurodevelopmental disorders receiving special education. The initiation of the data collection stage of our study coincided with the period when the infections started to dramatically increase in Turkey.

The parents in the present study reported that their children with any neurodevelopmental disorder had emotional (44.5%), behavioral (33.4%), sleep problems (65.2), and appetite changes (32.4%). Furthermore, while emotional problems’ frequency was 64.1% and 51.5% in ASD and ID groups, respectively, behavioral problems’ frequency was 77.1% and 61.2% in the ASD and ID groups. Previous studies reported frequencies of emotional and behavioral problems in children with ASD and ID were approximately 50% (Maskey et al., 2013, Dekker et al., 2002). In this study, emotional and behavioral problems in the ASD group and behavioral problems in the ID group were more common than in previous studies. A recent study conducted with children with special educational needs and disabilities, parents reported low mood 14%, behavior change 18%, general fear 17%, general anxiety 48%, and sleep disturbance 10% in their children (Asbury et al. 2021). Additionally, in a recent study investigating the emotional and behavioral effects of the Covid-19 pandemic in children diagnosed with ASD, behavioral problems were found more intense in 35.5% and more frequent in 41.5% (Colizzi et al. 2020). Mutluer et al. (2020) reported that children with ASD became more aggressive (55%), increased their tics or emerged new tics (26%), and deteriorated communication skills (29%) during pandemic (Mutluer et al. 2020). Consistent with the recent studies, our study demonstrated a significant increase in emotional and behavioral problems compared to the pre-pandemic period.

There are some researches based on questionnaires performed by parents that showed the prevalence of sleep problems had been 31–80% ranges in children with ASD (Allik et al. 2006, Krakowiak et al. 2008, Mattila et al. 2010, Oyane and Bjorvatn 2005, Souders et al. 2009). It was highlighted that children with ASD had more sleep problems than children with other neurodevelopmental disorders (Singh and Zimmerman 2015). Previous studies examining sleep problems in children diagnosed with ASD during the Covid-19 pandemic period, it was found that there were more sleep problems compared to the pre-pandemic period and that the increase in sleep problems was associated with exacerbation of autism symptoms (Türkoğlu et al. 2020, Mutluer et al. 2020). In our study, sleep problem’s frequency was 65.2% in the whole group and it was consistent with the literature. On the other hand, appetite changes were also evaluated and 32.4% of children were reported as having increased or decreased appetite. Colizzi et al. (2020) showed that 23% of parents of children with autism spectrum disorder had reported difficulties in managing the child’s meals since COVID-19 pandemic. Furthermore, Mutluer et al. reported the rate of appetite changes in individuals diagnosed with ASD during the pandemic period was 33% (Mutluer et al. 2020).

Children and adults who experience unexpected and unknown events display various psychological reactions, as was the case in our study. Understanding children's emotions and reactions is essential in order to meet their needs properly. Our results demonstrated that children displayed fewer behavioral problems when they were informed about the pandemic. It is important to have sensitive and effective communication with children about potentially life-threatening situations for the well-being of both the children and their parents (Dalton et al. 2019). Children need truthful information under such conditions, and when this information is not available, they try to make sense of these changes on their own, which can be problematic (Christ and Christ 2006). In our study, parents most frequently preferred to use the information they obtained from television and the Internet when informing their children about the pandemic. Furthermore, the most commonly preferred to ‘tell them that they were safe’ and ‘not to talk about the pandemic when the children were around’ in order to prevent them from being mentally affected by the pandemic. One study reported that one of the most common problems in children during an epidemic was the fear of asking questions about the epidemic (Jiao et al.2020). This finding can be considered an expression of requiring information. Moreover, the literature mentions that media entertainment has been used to a great extent to alleviate children's distress and to relieve their anxiety about an adverse condition (Jiao et al. 2020). In our study, participants in the ASD group were the least likely to receive information regarding the outbreak compared to other neurodevelopmental disorder groups. This may have resulted from interaction and communication deficiencies, both major symptoms of ASD (APA 2013). In their study, Mutluer et al. reported that the majority of the participants with ASD had difficulties understanding the pandemic and the precautions and had difficulties implementing social distance and hygiene regulations (Mutluer et al. 2020).

The pandemic has not only deprived this population of formal education, similar to typically developing children, but also of the special education that they had received before. In our study, we examined the effects of not being able to receive formal and special education, and receiving online instruction; we did not find a significant relationship between not attending formal education and the emotional, behavioral, sleep, and appetite problems of the children during the pandemic. However, the separate assessment of the groups revealed that the disruption of formal education increased emotional and behavioral problems in the ASD group and was associated with appetite problems in the ID group, but it did not significantly affect the other groups. One initial study during COVID-19 found that many parents of children with SENDs reported that the changes they experienced when schools were closed had a negative effect on their own mental health as well as that of their child (Asbury et al. 2021). In another study, more intense behavioral problems were reported in individuals diagnosed with ASD who were deprived of school support due to the COVID-19 pandemic; the same study emphasized the importance of communicating with the school in unexpected and emergency situations such as a pandemic (Colizzi et al. 2020). In a study in which the parents having a child with special educational needs and disabilities (83% of them were diagnosed with ASD) were asked what kind of support they wanted during the Covid-19 pandemic, their reporting, which were the most common needs of them, about seeking specific advice from special education coordinators and teachers about the needs of child, helping to implement new routines or reassuring on certain topics shows the importance of the school in children with neurodevelopmental disorders (Umar et al. 2020). Daily routines in normal life are essential for individuals with ASD to make the world predictable and calming (Larson 2006). Formal education is one of the most important daily routines for individuals with ASD, and the failure to resume it may be an extra source of stress. In addition to this, the adaptation of the ASD group to online education applied during this period may be more problematic than children with other neurodevelopmental disorders. In a study investigating the experiences of homeschooling in children with ASD, it was reported that the experience of homeschooling was less than optimal because of the reasons such as an increase in maladaptive behaviors in children during online education, low adaptability, and an increase in the care duties of parents (Daulay 2021). There was no significant association between not attending special education during the pandemic and the symptoms for all participants. This may be associated with the fact that children with neurodevelopmental disorders receive only 2 or 3 h of special education a week in Turkey.

One of the measures taken by the Turkish Ministry of Education in order to prevent the disruption of education due to the closure of schools was online instruction; in this regard, 43.1% of our participants received online education during the pandemic. Our analyses showed that children not attending online school displayed more mental health problems. This finding suggests that online school may be a protective intervention against emotional and behavioral problems during pandemic conditions. In a study researching the effects of switching to online education with pandemic on children, parents, and teachers, 17.6% of parents reported an increase in emotional or behavioral problems in their children. In the same study, teachers stated that they were worried about the interest, focus, and academic performance of students would decrease in the online education process (Zhao et al. 2020). Different findings show that further studies about the effects of online education on the mental health of children are needed. In our study, the ASD group had the lowest online education participation rate (35.9%), and educational status was not associated with emotional and behavioral problems. This result indicates that individuals with ASD need additional training interventions apart from the online education model. The fact that ASD is a psychiatric disorder that presents with inadequate communication and interaction suggests that the online education model may not be suitable for this group.

Another consequence of the restrictive measures taken during the pandemic is the restriction of the social activities in which the children usually participated. The correlation analysis revealed a positive correlation between attending extracurricular activities before the pandemic and the emotional and behavioral problems that the child experienced during the quarantine. In other words, being deprived of extracurricular activities due to the pandemic translated into increased emotional and behavioral problems in children. In the study, the ASD group had the highest rate for extracurricular activity participation. For this reason, and because a limited number of studies report benefits of alternative approaches like sports and animal and music therapy (Anderson-Hanley et al. 2011, Bass et al. 2009, London et al. 2020, Levy and Hyman 2015). This assessment was repeated separately for the ASD group. However, as evaluated by chi-square analysis, participants that did or did not participate in extracurricular activities before the pandemic was not significantly different.

Recent studies have reported that the COVID-19 pandemic has led to a rapid increase in anxiety, depression, and stress levels in the general population (Huang and Zhao 2020, Xiang et al. 2020). Furthermore, a study that compared quarantined and non-quarantined parents and children showed that PSTD symptoms were four times higher in the quarantined group (Sprang and Silman 2013). In addition, meeting the needs of children with neurodevelopmental disorders may have been an extra factor of parental distress during this period. As stated previously, 60.9% of the parents who participated in the study scored above the cut-off value of depression, and 37.5%, above that of anxiety. A meta-analysis exploring anxiety and depression levels of parents who had intellectual and developmental disabilities documented that depression and anxiety frequency were 31% and 31% (Scherer et al. 2019). Considering that there is a positive relationship between having a child with a neurodevelopmental disorder and parental anxiety and depression even in regular times, it can be thought that pandemic and quarantine conditions will further strengthen this relationship. In a study investigating the effects of the Covid-19 pandemic on the mental health of children with special educational needs and their parents, 44% of the parents reported an increase in anxiety symptoms for themselves. This rate was higher than the rate they reported for their children (25% increase in anxiety symptoms in their children) (Asbury et al. 2021). Preliminary data from a study of 3000 Chinese families during the COVID-19 period showed that parents with ASD children suffered from depression (46.01%), anxiety (44.67%), and stress (44.62%) (Wang and Zhao 2020). In another study made in Turkey, it was reported that the parents who had children with ASD, had minimum anxiety 25%, mild anxiety 29%, moderate anxiety 21%, and severe anxiety symptoms during Covid-19 pandemic (Mutluer et al. 2020). Additionally, more anxiety (12.2% vs. 6.6%) and more depression (depression: 31.0% vs. 21.7%) were reported in parents with children diagnosed with ASD compared to parents of children with typical development (Wang et al. 2021). Consistent with the previous studies, our study findings showed that parents with children diagnosed with neurodevelopmental disorders have suffered from significant anxiety and depression symptoms during the Covid-19 pandemic.

64.5% of the parents who participated in our study stated that they faced difficulties in child care. In a previous study, a significant number of parents reported that during the Covid-19 pandemic, they had difficulties managing their children's daily activities, especially leisure (78.1%) and structured activities (75.7%) (Colizzi et al 2020). Moreover, the fact that the majority of the parents that scored above the cut-off values for depression and anxiety stated that they had difficulty in caring for their child during the pandemic is consistent with studies demonstrating the relationship between parental mood and attitudes (Anthony et al. 2005, Reitman et al. 2001). For instance, anxiety and stress have been shown to negatively affect parental attitudes (Deater-Deckard and Scarr 1996). The impact of parents' moods on their attitudes can also lead to emotional and behavioral problems in the child. Indeed, we found a significant correlation between parents' anxiety and depression scores and the sleep, emotional, and behavioral problems of the children during the pandemic. In the literature, there are studies stating that anxiety or depression in the parents and negative parenting characteristics (e.g. oppressive, hostile) cause increased emotional and behavioral problems in the child (Crnic et al. 2005, Han and Lee 2018, Abidin 1992, Kim and Kang 2011, Vera et al. 2012). Multiple studies have demonstrated that the relationship between behavioral problems and parental stress is bidirectional (Baker et al. 2003, Orsmond et al. 2003). In a study conducted with parents who had children with ASD, the most frequently reported difficulties by the parents were the lack of support, the feeling of helplessness, and their greatest worries were worsening symptoms, loosing of previously acquired skills, and increasing behavioral problems in their children due to changing routines during the pandemic (Stankovic et al 2020). A previous study indicated a correlation between parental anxiety level and severity of behavioral problems assessed by Aberrant Behavior Checklist (ABC) (Mutluer et al. 2020).

In our study, logistic regression analysis revealed that the parents' having problems in the child's care and sleep problems were risk factors for behavioral problems in the children. The relationship between parental attitudes and the emotional and behavioral problems in children is discussed above. Also, the presence of sleep problems predicts emotional and behavioral problems. This finding is consistent with those of studies indicating that sleep problems have adverse effects on emotional and behavioral problems, especially in children with neurodevelopmental disorders (Astill et al. 2012, Chorney et al. 2007, Van der Heijden et al. 2018). In addition, in another study evaluating the quality of life of children and their parents during the Covid-19 pandemic, changes in children's sleep rhythms were found to be associated with a decrease in the quality of life of both parents and children (Ueda et al. 2021). Moreover, it was emphasized that sleep problems during home confinement were associated with increased ASD symptoms (Türkoğlu et al. 2020).

Early studies emphasized that strong social support received after a disaster was associated with resilience (Rodriguez-Llanes et al. 2013). Therefore, it is very important having social support for parents who have children with neurodevelopmental disorders and their children during the COVID-19 pandemic in terms of addressing the problems, making arrangements in the home environment, and gaining coping skills (Ameis et al 2020). Colizzi et al. (2020) indicated that the most commonly reported needs by the parents having children with ASD were in-home healthcare support (29.9%), center-based healthcare support (10.4%), loosening quarantine restrictions (9.7%), ending lockdown (7.1%), and in-hospital healthcare support (7.1%). A study in which WeChat-based parenting education (WBPT) was applied to mothers with autistic children in China, it was shown that the program in question had positive effects on anxiety, depression, parental stress, and hope levels in parents. Besides, 90.4% of the parents who participated in the study reported that they were delighted with WBPT (Liu et al 2021). These studies highlight the importance of various national training programs for parents of children with neurodevelopmental disorders to benefit both in daily life and in emergencies such as pandemics.

Our study has several limitations. Firstly, the validity and reliability study of the questionnaire we used in the study was not conducted. Additionally, according to Turkish health policies, children with ADHD do not qualify for special education; these cases were thus excluded from this study. The methodological limitations of our study are the lack of healthy controls, the lower number of participants with SLD and CD compared to ASD and ID, and the fact that the assessment was based only on the online questionnaire. When we consider that the effects of the pandemic on the mental health of the child and his/her parent may be different depending on the type of neurodevelopmental disorder, the heterogeneity of the participants is another limitation of our study. Furthermore, measures are only taken during the pandemic, so we compared the data by parents’ perceptions about pre-pandemic.

In conclusion, the increase in emotional, behavioral, sleep, and appetite problems in children with neurodevelopmental disorder diagnosis during the pandemic period and the high risk for both anxiety and depression in parents were presented in our study. Therefore, it is crucial to determine the effects of the COVID-19 pandemic, whose effects are expected to continue in the coming years, on this vulnerable group of individuals and their families in order to develop adequate health practices to prevent the possible negative experiences of these patients who are commonly overlooked.

Disclosure statement

The authors declare no conflict of interest.

Funding

This research did not receive any specific grant from funding agencies in the public, commercial, or not-for-profit sectors.

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