Introduction
After the World Health Organization (WHO) declared coronavirus disease (COVID-19) a pandemic on March 11, 2020, many countries implemented lockdowns as a measure to control the spread of infection (Asbury et al., 2021; Colizzi et al., 2020; Ghebreyesus, 2020). Fearing an uncontrollable spread of COVID-19 in countries with limited resources, the WHO recommended that governments implement vigorous measures, especially in large cities in sub-Saharan Africa (Ghebreyesus, 2020).
In response to the global threat, the government of [country] imposed a lockdown on March 15, 2020, affecting the country’s capital, one of the largest metropolitan area in sub-Saharan Africa. This measure resulted in the closure of offices, markets, schools, and specialized rehabilitation centers, including those for Autism Spectrum Disorders (ASD). All categories of workers, including parents of children enrolled in ASD programs, were ordered to stay at home.
ASD is a severe and chronic neurodevelopmental disorder characterized by deficits in social communication and restricted, repetitive behaviors (American Psychiatric Association [APA], 2013). While ASD prevalence ranges from 0.6 to 1.5% in developed countries (APA, 2013; Elsabbagh et al., 2012), it remains largely unknown in limited-resource settings, including sub-Saharan Africa (Elsabbagh et al., 2012). Hospital-level data from sub-Saharan Africa utters that ASD prevalence varies widely, from 0.07 to 33.5% among children (Bakare et al., 2011; Mpaka et al., 2016).
Many children with ASD lack autonomy and have specific needs requiring support from parents, psychosocial workers and/or trained educators (Eshraghi et al., 2020). During the pandemic, parents faced challenges due to limited resources and lack of external support (Spinelli et al., 2020), exacerbating the psychological and socioeconomic burden associated with managing the maladaptive behaviors and specific needs of children with ASD (Hsiao et al., 2017).
Parents play a crucial role as partners in the educational and health care processes for children with ASD (Bellomo et al., 2020). Parental emotional well-being can directly affect the progress and well-being of a child with ASD; for example, maternal depression has been shown to negatively affect the child’s development (Chung et al., 2022; Colizzi et al., 2020; Van Steijn et al., 2014).
Several studies have documented the negative effects of lockdown measures on children with ASD (Colizzi et al., 2020; Dal Pai et al., 2022; Di Renzo et al., 2020; Mutluer et al., 2020; Spinelli et al., 2020). In Spain, 30–40% of ASD children exhibited behavioral problems such as conduct problems, emotional difficulties, and hyperactivity (Di Renzo et al., 2020). Similarly, in Italy, parents reported an increase in behavioral problems from 35.5 to 41.5% during lockdown (Spinelli et al., 2020). Mutluer et al. (2020) reported an increase in aggression, hypersensitivity, and sleep and eating disturbances.
Conversely, few studies have highlighted positive effects on autism symptoms during lockdown (Bellomo et al., 2020; Mumbardó-Adam et al., 2021). Some environmental factors, including increased time spent with the child (approximately 15–25 h per week), have been associated with positive outcomes in autism symptom progression (Bellomo et al., 2020). Both child-related factors (e.g., type and severity of symptoms) and parent-related factors (e.g., availability of leisure time and emotional capacity for caregiving) may positively or negatively influence ASD symptoms trajectories during lockdown (Mutluer et al., 2020). Some authors have suggested that school closures provide an opportunity for parents to increase their involvement in the care and support of their child with ASD (Mumbardó-Adam et al., 2021).
The aims of this study were twofold: first, to describe the impact of COVID-19 lockdown on the evolution of main clinical symptoms in children with autism; second, to assess the influence of parental presence at home, parental depression, and the presence of comorbidities in children on the evolution of ASD symptoms during COVID-19 lockdown.
Methods
Design, Participants, Period
Design and Scope
This is a cross-sectional, observational, and explanatory study conducted on a clinical sample of children with ASD who attended CEIEHMA, a private psycho-educational institution specializing in the care and education of children with autism and other neurodevelopmental disorders. The Centre is in the capital [Country] and has three locations: Bandalungwa (Bandal), Lemba and Ngaliema.
Participants and Period
During the Covid Lock down, CEIEHMA was closed, and all children were sent home. The study was conducted from April 15 to July 15, 2020, and included child-parent pairs. A total of 68 parents, aged between 32 and 65 years (mean = 43.1, SD = 6.67), and their children, 57 boys (83.8%) and 11 girls (16.2%), aged between 3 and 17 years (mean = 9.3, SD = 3.44), participated in this study.
Inclusion Criteria
-
All children were enrolled and monitored at the school for the 2019–2020 academic year for the management of autism. Only children diagnosed with autism according to DSM-5 (APA, 2013) and Childhood Autism Rating Scale (CARS) criteria (Schopler et al., 1993) were included. Each child had a medical file with detailed information on clinical and psychological examinations, and the evolution of the autistic child’s symptoms since admission to the center prior to COVID-19.
-
Parents or primary caregivers had to meet the following criteria:
-
they are the main carers of the child with ASD followed at CEIEHMA for the management of their autism prior to the pandemic.
-
they are registered in the school/center (CEIEHMA) database of parents of children with autism for the 2019–2020 academic year for the management of autism.
-
they stayed at home with their child during lockdown.
-
they agreed to provide information on their child’s developmental history, on their symptoms prior to lockdown and on the evolution of the ASD symptoms during lockdown.
-
they agreed to complete the Goldberg Depression Scale (GDS).
-
Exclusion Criteria
Parents were excluded from the study if (1) they could not be reached by telephone, WhatsApp or email; (2) had acute mental or neurological condition affecting cognitive function; (3) Declined to participate or were unavailable for the interview; (4) were under the influence of alcohol or drugs during the interview; (5) did not look after the child with autism during the lockdown.
A total of 165 parents or caregivers were contacted via WhatsApp, phone or email. Sixty parents/caregivers were not available for the study. Thirty-seven participants did not meet the inclusion criteria: parents did not have information on the developmental history, did not look after their child during lockdown, did not complete the GDS. leaving a final sample of 68 parents or caregivers (see Fig. 1).
Fig. 1
Flow chart of the study selection cohort
×
![]()
Variables of Interest
The variables of interest were as follows:
Socio-Demographic Characteristics of the Child
Age, sex (male, female), child recruitment site.
Parental Socio-Demographic Characteristics
Parental status (father, mother, caregiver), age at the birth of the child with ASD, occupation (civil servant, self-employed, unemployed), religion (traditional, revival church), marital status (single parent, monogamous, and polygamous).
Clinical Characteristics of the Child
Prior to lockdown and during lockdown, age at diagnosis, main ASD’s alerts symptoms including language, behavior, social interaction, independency, general clinical symptoms including appetite, sleep and the presence of comorbidities including intellectual disability (ID),’ attention deficit hyperactivity disorder (ADHD), cerebral palsy, learning disability and epilepsy. All symptoms and alert symptoms were assessed by parents and/or primary caregivers prior to lockdown and during lockdown using the six-point Likert scale. This scale uses 6 levels including very good, good, status quo, less good, bad, very bad and regression The evolution of a child’s symptoms is positive if the answer is “very good” or “good” and the evolution is considered negative if the participant replies by either “status quo,” “less good,” “bad,” or very bad or regression.”
Clinical Characteristics of the Parents and/or Primary Caregivers
Time spent at home caring for the child before and during the lockdown was recorded. Spending more than 8 h per day, 5 days per week was considered sufficient for a parent or primary caregiver to care for their child.
Measures
Diagnosis of ASD
Diagnosis was based on DSM-5 criteria and Childhood Autism Rating Scale (CARS) assessment conducted by the center’s psychologist or psychiatrist prior to the COVID-19 pandemic.
Depression Measurements in Parent
Parental/caregiver depression was assessed using the Goldberg Depression Scale (Goldberg & Hillier, 1979), a self-report questionnaire consisting of 18 items rated on a 0–5 Likert scale. Scores were categorized as follows: no depression (0–9), probable depression (10–17), symptoms close to depression (18–21), moderate to minor depression (22–35), and moderate to severe depression (36–53). To facilitate statistical analysis, we dichotomized these depression scores into two categories based on severity and need for appropriate care: (1) absence of depression or no depression for a score < 36 and (2) the presence of moderate to severe depression for a score > 36, which required evaluation and appropriate treatment by a psychologist and/or psychiatrist.
Procedures
Participants were recruited from the CEIEHMA center’s database of children attending the center. Parents or primary caregivers of children with ASD who met the inclusion criteria were contacted by the research team via WhatsApp group or phone calls to introduce the study and invite them to participate.
The research team consisted of 8 professionals: Five educators from three CEIEHMA centers (Bandal, Lemba and Ngaliema) including two psychology students, one psychiatric assistant, and two supervisors, including one psychologist and one psychiatrist, the co-investigator and the principal investigator respectively.
Prior to the survey, the center’s educators and the psychiatric assistant received two days of training from the psychiatrist and psychologist to validate the questionnaire, extract information on the sociodemographic characteristics of each child-parent pair in the center’s registry, administer the questionnaire and the GDS, and ensure compliance with barrier measures against COVID-19.
After training, educators contacted parents to schedule appointments either at their homes or at the center (CEIEHMA). Parents who agreed to participate were interviewed by surveyors, either at home or at the center.
Parents were asked to describe the course of their child’s ASD symptoms during the lockdown. They also completed the Goldberg Depression Scale (Goldberg & Hillier, 1979) to assess depressive symptoms during this period. Any parent scoring > 53 was referred for further psychiatric evaluation, others received basic psychological support.
A questionnaire capturing sociodemographic and clinical characteristics of ASD children, and their parents or primary caregivers was completed by one or both parents or caregivers.
Both parents completed the questionnaire in 24 cases (35.3%), while it was completed by mothers in 32 cases (47.1%), and fathers in 12 cases (17.6%).
Ethical Statement
This observational study received approval from the ethics committee housed at the Department of Psychology, National University of Education in the country’s capital.
Data Analysis
Data were collected and then coded in an Excel spreadsheet. Numerical variables were summarized using mean ± standard deviation, and categorical variables as proportions.
Differences in proportions between groups (No-Evolution: n = 39, Evolution: n = 29) and their 95% confidence intervals were analyzed using the Newcombe-Wilson score method, considering our small and unbalanced sample size.
For continuous variables (e.g., age at autism diagnosis) that violated normality assumptions (checked by Lilliefors test), the Wilcoxon test was used to determine confidence intervals for the difference. This test was chosen because of the abnormal distribution (p-value = 0.031˂0.05) of the variable “age at diagnosis of autism” in the Lilliefors normality test.
Multivariate analysis was performed using logistic regression to assess factors associated with parents reporting positive evolution of ASD symptoms during the lockdown. The model was adjusted for demographic and clinical characteristics. Analysis was performed using the “glm” function in R software.
Results
A total of 68 parents, aged between 32 and 65 years (mean = 43.1, SD = 6.67), and their children, 57 boys (83.8%) and 11 girls (16.2%), aged between 3 and 17 years (mean = 9.3, SD = 3.44), participated in this study. Of the 68 children with ASD diagnosed at CEIEHMA, 28 children (41.2%) were from the Ngaliema center, 24 children (35.6%) from the Bandal center, and 16 children (23.5%) from the Lemba center (see Table 1).
Most of the children in the cohort were male (83.8%), with a mean age of 9.3 ± 3.44 years (range 3–17). The mean age of the significant caregiver was 43.1 ± 6.67 years, predominantly mothers (47.1%) and fathers (17.6%). Most families were monogamous (65%), and 80.9% of the parents had a university education. 19% of the parents were worked as civil servants (see Table 1).
Table 1
Socio-demographic characteristics of children and parents
Variables | Modalities | Statistics |
|---|---|---|
Recruitment site, N (%) | ||
Lemba | 16 (23.5) | |
Bandal | 24 (35.3) | |
Ngaliema | 28 (41.2) | |
Sex, N (%) | ||
Male | 57 (83.8) | |
Female | 11 (16.2) | |
Mean chronological Age | Mean (Sd) | 9.2(3.44) |
Mean age at diagnosis | Mean (Sd) | 6.2(2.50) |
Mean age of parent at enrollment | Mean (Sd) | 43.1(6.6) |
Monogamy family structure, N (%) | ||
Yes | 65 (95.6) | |
No | 03(04.4) | |
Significant caregiver’s Occupation, N (%) | ||
Unemployed | 44 (64.7) | |
Self-employment | 11 (16.2) | |
Employed | 13 (19.1) | |
caregiver ‘s level of education, N (%) | ||
College | 13 (19.1) | |
University | 55 (80.9) | |
Significant caregiver, N (%) | ||
Father | 12 (17.6) | |
Mother | 32 (47.1) | |
Others | 24 (35.3) |
Description of Demographic and Clinical Factors According to the Evolution of ASD Symptoms in the Children as Reported by Their Parents
Table 2 shows that during the lockdown period, 29 parents (42.6%) reported a positive evolution of their child’s ASD symptoms, while 39 parents (57.4%) observed no change. Among the children, girls had a higher rate of positive evolution of symptoms (6 out of 11) compared to boys (23 out of 57).
Certain groups of parents observed a positive evolution of their child’s autism symptoms during the COVID-19 lock-down period. Specifically, older parents (43.3 ± 5.7 years) were more likely to perceive an improvement in symptoms than younger parents (42.9 ± 7.4 years).
In terms of employment, 8 out of 13 (i.e. about 62%) parents who reported a positive evolution were civil servant, whereas only 21 out of 55 (i.e. about 38%) self-employed parents reported the same evolution. In other words, the proportion of employed parents who reported a positive improvement in their child’s ASD symptoms was significantly higher than that of self-employed parents.
Finally, biological parents (father or mother) were more likely than other caregivers (aunt, cousin, nanny, brother) to notice a positive improvement in their child’s ASD symptoms. Parents with a college education, as well as those who reported staying home for more than 8 h per day, 5 or more days per week, were also more likely to perceive a positive evolution of their autistic children’s symptoms during the COVID-19 lockdown in the country’s capital (see Table 2).
Table 2
General characteristics of the parents and children by evolution of the symptoms during lockdown
Characteristics | Overall N = 68 | No-evolution N = 39 | Positive evolution N = 29 |
|---|---|---|---|
Mean age of significant caregiver, (SD) | 43.1(6.7) | 42.9 (7.4) | 43.3 (5.7) |
Sex of the child, N (%) | |||
Male | 57 (83.8) | 34 (87.2) | 23 (79.3) |
Female | 11(16.2) | 05(12.8) | 06(20.7) |
Presence of comorbidities, N (%) | |||
Yes | 41(60.29) | 28 (71.8) | 13 (44.8) |
No | 27(39.71) | 11 (28.2) | 16 (55.2) |
Significant parent’s occupation, N (%) | |||
Self-employed | 55 (80.9) | 34 (87.2) | 21 (72.4) |
Employed | 13 (19.1) | 05(12.8) | 08(27.6) |
Education of parent, N (%) | |||
College | 13 (19.1) | 09(23.1) | 04(13.8) |
University | 55 (80.9) | 30 (76.9) | 25 (86.2) |
Depression, N (%) | |||
Severe or moderate | 29 (42.6) | 24 (61.5) | 05(17.2) |
Leger | 39 (57.4) | 15 (38.5) | 24 (82.8) |
Monogamy family structure, N (%) | |||
Yes | 65 (95.6) | 38 (97.4) | 27 (93.1) |
No | 03(04.4) | 01(02.6) | 02(06.9) |
Person taking care of the child, N (%) | |||
Parents | 41 (60.3) | 18 (46.15) | 23 (79.3) |
Others | 27(39.7) | 21 (53.85) | 06(20.7) |
Time spent at home/day, N (%) | |||
Less than 8 h/day | 32 (47.1) | 23 (59.0) | 09(31.0) |
More than 8 h/day | 36 (52.9) | 16 (41.0) | 20 (69.0) |
Parents’ Assessment of the Evolution of the Main Symptoms of Autism Before and During Lockdown
Figure 2 illustrates the parents’ assessment of changes in the main symptoms of autism during lockdown compared to before. Behavioral disorders and autonomy deficits were reported to have increased, while language and social interaction difficulties decreased according to parent’s observations (see Fig. 2).
Fig. 2
Main alert sympms of children with ASD before and during the lockdown
×
![]()
Clinical Characteristics of Children with Autism and Parents Associated with the Child’s Evolution During the Lockdown
The analysis of the clinical characteristics of children with autism and parents associated with the child’s evolution during the lockdown, which are presented in Table 3, show that significant differences in proportions between the two groups (evolution and no-evolution) were observed for some variables:
Positive changes of parent-reported symptoms were associated with improvement in language disorders (communication disorders) and sphincter autonomy in children with autism. On the other hand, poor or no change was associated with the presence of moderate to severe parental / primary caregiver depression, and the presence of autism comorbidities (see Table 3).
Table 3
Analysis of the clinical characteristics of the child with autism and parents associated with the child’s evolution during the lock-down
Characteristics | Overall N = 68 | No-evolution N = 39 | Positive evolution N = 29 | Difference (95% CI)a. |
|---|---|---|---|---|
Mean age at ASD diagnosis, years (SD) | 6.2 (2.5) | 6.3 (2.7) | 6.0 (2.4) | 0.20 (-0.90, 1.40) |
Severe or moderate depression, N (%) | 29 (42.6) | 24 (61.5) | 5 (17.2) | 0.44 (0.21, 0.61) |
Comorbidities, N (%) | 41 (60.3) | 28 (71.8) | 13 (44.8) | 0.27 (0.03, 0.47) |
Positive language appreciation, N (%) | 38 (55.9) | 15 (38.5) | 23 (79.3) | 0.41 (0.17, 0.58) |
Positive behavior appreciation, N (%) | 27 (39.7) | 14 (35.9) | 13 (44.8) | 0.09 (-0.14, 0.31) |
Positive appreciation of social interaction, N (%) | 41 (60.3) | 20 (51.3) | 21 (72.4) | 0.21 (-0.02, 0.41) |
Positive appreciation of autonomy, N (%) | 28 (41.2) | 12 (30.8) | 16 (55.2) | 0.24 (0.01, 0.45) |
Positive sleep appreciation, N (%) | 32 (47.1) | 19 (48.7) | 13 (44.8) | 0.04 (-0.19, 0.26) |
Positive appetite appreciation, N (%) | 35 (51.5) | 20 (51.3) | 15 (51.7) | 0.01 (-0.22, 0.23) |
Determinants of Positive Evolution of Symptoms in Children with ASD During Covid-19 Lockdown
Logistic regression analysis (see Table 4) revealed several factors associated with positive symptom evolution during lockdown. Significant factors included parents spending more than 8 h per day, 5 days per week with the child (OR: 5.86; 95% CI: 1.02–49.3), improvements in language (OR: 6.13; 95% CI: 2.13–19.9), and autonomy (OR: 2.77; 95% CI: 1.03–7.71). Conversely, moderate to severe parental depression (OR: 0.13; 95% CI: 0.04–0.39) and the presence of comorbidities in the child (OR: 0.32; 95% CI: 0.11–0.86) were associated with a negative outcome.
Male sex, mean age at diagnosis of autism, the education level and occupation of parents or primary caregivers, positive rating of behavior, social interactions, and sleep and appetite, did not show a significant association with the likelihood of a positive evolution of children with autism in the studied cohort.
Table 4
Logistic regression: odds ratios (OR) and 95% confidence intervals for the associated characteristic on positive evolution during lockdown
Characteristics | Unadjusted OR (95% CI, p-value) | Adjusted OR (95% CI, p-value) | |
|---|---|---|---|
Male sex | 0.56 (0.15–2.08, p = 0.387) | 0.17 (0.01–1.83, p = 0.163) | |
Mean age at ASD diagnosis, years | 0.94 (0.77–1.14, p = 0.548) | 0.98 (0.69–1.39, p = 0.929) | |
Significant caregiver’s Academic education | 1.87 (0.54–7.59, p = 0.340) | 3.94 (0.42–43.4, p = 0.236) | |
Significant caregiver occupation (reference: Unemployed ) | |||
Self-employment | 0.91 (0.21–3.49, p = 0.890) | 0.17 (0.01–2.04, p = 0.185) | |
Employed | 2.54 (0.73–9.65, p = 0.151) | 2.76 (0.46–20.1, p = 0.280) | |
Severe or moderate depression | 0.13 (0.04–0.39, p = 0.001) | 0.15 (0.02–0.71, p = 0.024) | |
Comorbidities | 0.32 (0.11–0.86, p = 0.027) | 0.17 (0.03–0.83, p = 0.039) | |
Positive evolution in language/ communication | 6.13 (2.13–19.9, p = 0.001) | 8.30 (1.26–80.4, p = 0.041) | |
Positive evolution in behavior | 1.45 (0.54–3.91, p = 0.457) | 0.48 (0.05–3.69, p = 0.501) | |
Positive evolution of social interaction | 2.49 (0.91–7.26, p = 0.082) | 2.94 (0.24–49.8, p = 0.408) | |
Positive evolution of autonomy | 2.77 (1.03–7.71, p = 0.046) | 11.5 (1.27–22.3, p = 0.053) | |
Positive evolution of sleep | 0.86 (0.32–2.24, p = 0.751) | 0.38 (0.02–4.21, p = 0.448) | |
Positive evolution of appetite | 1.02 (0.39–2.68, p = 0.971) | 0.55 (0.07–4.01, p = 0.553) | |
Significant caregiver who stayed at home for 8 h or more | 3.19 (1.19–9.12, p = 0.025) | 5.86 (1.02–49.3, p = 0.054) | |
Discussion
To the best of our knowledge, this is the first study to evaluate the evolution of a child’s ASD symptoms during the lockdown, as reported by parents or primary caregivers, and to identify factors associated with this in our setting. Results show that 42.6% of parents reported a positive change in their child’s ASD symptoms. In fact, more than one in two parents (55.9%) reported a positive change in their child’s communication and language symptoms associated during lockdown (Table 3). This was associated (OR: 6.13; 95% CI: 2.13–19.9) with the perceptions of positive symptom progression in children with ASD during Covid-19 lock-down (Table 4). In addition, One out of two parents of children with autism in our study reported a positive evolution of their children’s lack of autonomy during lockdown (OR: 2.77; 95% CI: 1.03–7.71) (Table 4). However, the remaining 57.4% of parents reported no change, deterioration or regression in their child’s ASD symptoms during Lockdown.
Consistent with other studies, government-imposed lockdowns to contain the spread of COVID-19 had positive (Di Renzo et al., 2020; Berard et al., 2021; Mumbardó-Adam et al., 2021) and negative (Colizzi et al., 2020; Di Renzo et al., 2020; Bhat, 2021; Levante et al., 2021; Mutluer et al., 2020) effects on autism symptom trajectories.
Certain sociodemographic and clinical characteristics of both parents and children were associated with the positive and negative progression of autism symptoms during lockdown. (see Table 2). Indeed, the results of our study support the hypothesis that parent-related factors (such as time spent at home, emotional state, occupation, education, age, and gender) and child-related factors (such as symptom severity and presence of comorbidities, among others) may influence the evolution of autism symptoms, particularly communication and child autonomy. These factors are discussed below.
Presence of a Parent or Primary Caregiver at Home
This is the first study to report an association between the presence of a significant parent at home for at least 8 h a day for 5 days a week and a positive evolution of autonomy, social interaction and language of children diagnosed with autism (OR: 5.86; 95%CI: 1.02–49.3). (Tables 3 and 4). Our study confirms that the parents or primary caregivers play a critical role in the therapeutic alliance with relevant health professionals to reduce a child’s ASD symptoms (Berard et al., 2021; Kreysa et al., 2022). Thus, increased positive exchanges, secure presence the child during their close contact can explain this positive evolution (Kreysa et al., 2022; Logrieco et al., 2022; Lovaas, 1973; Pickard et al., 2017; Mumbardó-Adam et al., 2021; Sergi et al., 2021). As reported before, such proximity during the lockdown may provide an opportunity for parents to strengthen their bond with their child, improving the child’s well-being and autonomy (Kreysa et al., 2022; Pickard et al., 2017; Mumbardó-Adam et al., 2021; Sergi et al., 2021; Tokatly Latzer et al., 2021). Other authors reported a positive effect of COVID lock-down on duration and intensity of the child’s learning. (Berry & O’Connor, 2010; Edelvik et al., 2006). To reduce inequalities in access to education for children with ASD, it is important for parents to be supervised and trained on how to support their children at home, particularly in resource- limited settings (Schalock & Luckasson,2021). This home support from a supervised parent can be equivalent to that provided in specialized ASD institutions (Eckes et al., 2023; Sallows & Graupner, 2005). This finding is consistent with the literature on the Applied Behavior Analysis (ABA) approach (Luiselli, 2017), where continuous behavioral, rehabilitative, psychological, and intensive support of more than 20 to 40 h per week has been associated with a reduction in ASD symptoms (Berry & O’Connor, 2010; Edelvik et al., 2006; Peters-Scheffer et al., 2011).
Depression Symptoms in Parents or Primary Caregivers
Symptoms of moderate to severe depression were seen in 40% of the parents which is more request than in the general population during Covid-19 lockdown (Logrieco et al., 2022). The presence of these symptoms in the parents were associated with a negative trajectory of the child’s main ASD symptoms (OR: 0.13; 95% CI: 0.04–0.39) (Tables 3 and 4). This finding confirms that the presence of depressive disorders in the parents of autistic children negatively impact the well-being of their children (Chung et al., 2022; Colizzi et al., 2020; Van Steijn et al., 2014). Indeed, studies have reported 30–60% of moderate to high levels of anxiety or depressive symptoms in parents or primary caregivers (Hsiao et al., 2017; Pottie et al., 2009). Parents’ negative emotions have a negative impact on their child’s emotional state and, on the evolution of the symptoms of a child with ASD such as conduct disorder or autonomy (Spinelli et al., 2020). In addition, a parent with emotional disturbances or negative parental emotions may be at risk of misjudging or misperceiving the evolution of their child’s ASD symptoms (Janssen et al., 2020; Levante et al., 2021; Logrieco et al., 2022). This suggests the need to provide social and psychological support to parents and to alleviate socioeconomic and psychological difficulties within families (Schalock & Luckasson, 2021). In addition, the psychological distress of parents or the primary caregivers of children with ASD should be assessed concurrently with childcare (Janssen et al., 2020).
Presence of Comorbidities for Children with ASD
In our study (Tables 3 and 4), the presence of comorbidities (ID, epilepsy, ADHD, cerebral palsy) in children with ASD was associated with a negative or no change in their main ASD symptoms (OR:0.17; 95% CI: 0.03–0.83). Indeed, the presence of comorbidities may exacerbate the severity of ASD and can increase parental stress, which in turn may increase the vulnerability of both parties (Christensen, 2018).
As in other studies, these findings confirm the vulnerability of children with autism who have comorbidities such as ID or epilepsy in terms of their overall development (Christensen, 2018; Colizzi et al., 2020). In contrast, Colizzi et al. (2020) found no association between the presence of comorbidities and an increase in behavioral impairment in children with ASD (Colizzi et al., 2020). This difference may be explained by the presence of numerous ASD comorbidities in Sub-Saharan African countries (Colizzi et al., 2020; Mpaka et al., 2016).
Communication / Language Symptoms During Lockdown
In our study more than one in two parents (55.9%) reported a positive change in their child’s communication and language symptoms associated during lockdown (Table 3). This was associated (OR: 6.13; 95% CI: 2.13–19.9) with the perceptions of positive symptom progression in children with ASD during Covid-19 lockdown (Table 4). The findings of positive evolution during lockdown were also found by Berard et al. (2021) in France and Di Renzo et al. (2020) in Spain. However, Mutluer et al. (2020) and Bhat et al. (2021) in their studies of individuals with ASD aged between 3 and 29 years, with a mean age of 13.96 ± 6 years reported a negative evolution or deterioration or delay in communication. The positive evolution found in our study can be explained by the presence of a parent or primary caregiver at home who spent more time to caring for his or her child (Sergi et al., 2021). In fact, the presence of a parent or primary caregiver who cares for their child can increase or improve their stimulating affective and interactive, which in turn promotes the child’s ability to imitate, a guarantee of language development. Their involvement at home helps to maintain and generalize the learning achieved in the school environment (Berard et al., 2021; Lovaas et al., 1973).
Autonomy
One out of two parents of children with autism in our study reported a positive evolution of their children’s lack of autonomy during lockdown (OR: 2.77; 95% CI: 1.03–7.71) (Table 4).This finding reinforces the importance and influence of parent’s presence and involvement in sphincter training and synchronization in managing their child’s toilet training and other new skills during lockdown (Eckes et al., 2023; Mumbardó-Adam et al., 2021; Sergi et al., 2021). In other studies, parents did not report any changes in their child’s autonomy during the lockdown (Colizzi et al., 2020, Di Renzo et al.,2020).
Limitations
This study relied on parents’ perceptions of feelings and behaviors associated with a stressful experience, and, as such, responses are potentially biased due to recall bias and social desirability. In addition, the parents’ subjective level of distress may have interfered with their insight into their child’s symptoms and functioning. Furthermore, respondents who completed the online interview represent a self-selected group who may have had a special interest in the topic; therefore, generalization of the results is limited.
Conclusion
This study, conducted at the CEIEHMA in the capital [Country] provides insight into factors influencing the development of ASD symptoms during the COVID-19 lockdown period. 42.6% of parents reported positive changes in their child’s symptoms, highlighting the potential impact of parental presence and involvement during this period.
The presence of a significant parent at home for extended periods of time was positively correlated with symptom improvement in children with ASD. This finding underscores the importance of parental support and involvement in therapeutic alliances, which can enhance the well-being and autonomy of children with ASD, especially during periods of limited access to specialized services. Conversely, parental depression and the presence of comorbidities in children were associated with poorer outcomes, highlighting the need for targeted support and interventions for both parents and children facing these challenges.
The study contributes to the understanding of how environmental factors, particularly parental presence and emotional state, may influence the developmental trajectories of children with ASD during stressful periods such as lockdown. Future research should further explore these dynamics and develop strategies to support families in effectively managing ASD symptoms under different circumstances.
Acknowledgements
The authors would like to thank the children and their parents for their participation, without which, this research would not have been possible. The authors are grateful to the CEIEHMA schools in city where this study was carried out. Our deepest appreciation also goes to Specialized Educators of the CEIEHMA center, Dr Bienvenu Nzinga, Elizabeth Odinga and alongside LC for their English language editing assistance.
Open Access This article is licensed under a Creative Commons Attribution-NonCommercial-NoDerivatives 4.0 International License, which permits any non-commercial use, sharing, distribution and reproduction in any medium or format, as long as you give appropriate credit to the original author(s) and the source, provide a link to the Creative Commons licence, and indicate if you modified the licensed material. You do not have permission under this licence to share adapted material derived from this article or parts of it. The images or other third party material in this article are included in the article’s Creative Commons licence, unless indicated otherwise in a credit line to the material. If material is not included in the article’s Creative Commons licence and your intended use is not permitted by statutory regulation or exceeds the permitted use, you will need to obtain permission directly from the copyright holder. To view a copy of this licence, visit http://creativecommons.org/licenses/by-nc-nd/4.0/.
Publisher’s Note
Springer Nature remains neutral with regard to jurisdictional claims in published maps and institutional affiliations.