Autism Spectrum Disorder and COVID-19: Helping Caregivers Navigate the Pandemic

Lim, Tammy; Tan, Mae Yue; Aishworiya, Ramkumar; Kang, Ying Qi

doi:10.47102/annals-acadmedsg.2020112

Cited by 24 publications

(31 citation statements)

References 8 publications

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“…These concerns resonate with reports that emphasize the importance of providing formal and informal care to the well-being and competency of parents of children with autism (Hall, 2012; Twoy et al, 2007; Wodehouse & McGill, 2009). Moreover, recently published opinion-based articles related to COVID-19 and children with autism suggested ideas that align with our findings; highlighting the importance of the special education services to children with ASD and advising them to maintain close contact with the parents through weekly consultations and/or the provision of a “hotline” that could aid in managing general and COVID-19-related issues that arise (Lim et al, 2020; Narzisi, 2020; Pellicano et al, 2020; Smile, 2020; Yahya & Khawaja, 2020). Interestingly, and contrary to some of these recent publications, the findings in our study indicate that virtual meetings with the children were not tolerated well, further emphasizing the need to direct the attention during these times on instructing parents and improving their competence in applying relevant therapeutic disciplines.…”

Section: Discussionsupporting

confidence: 81%

“…As part of the guidance given to families in times of a quarantine/lockdown, special attention should be directed at the family dynamics in terms of attempting to resolve parental/sibling discord and encouraging the social engagement of siblings. These suggestions are also supported by recent publications that underline the importance of time spent together between children with autism and their family members, suggesting that it could help in maintaining social development, reduce maladaptive behavior, and benefit the general adjustment to stress (Lim et al, 2020; Narzisi, 2020; Pellicano et al, 2020).…”

Section: Discussionmentioning

confidence: 66%

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Core experiences of parents of children with autism during the COVID-19 pandemic lockdown

Latzer

Leitner

Karnieli‐Miller

2021

Autism

158

110

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The lockdown that was imposed by governments as part of the attempt to contain the COVID-19 pandemic included extreme measures, such as home confinement and the shutting down of special education systems. Our aim was to learn about the core experiences of parents of children with autism during this significant life disturbance. Thirty-one parents of 25 children with autism participated in semi-structured telephone interviews which were transcribed verbatim and underwent a qualitative, immersion/crystallization analysis. The analysis was conducted in an iterative consensus-building process to identify parents’ experiences, concerns, challenges, coping strategies, and perceived needs during the lockdown. The main themes that emerged related to the various parental concerns; the major difficulties encountered during this unique time, the functional, social, and behavioral implications the lockdown had on these children; and the manner in which the parents coped as an indication of their resourcefulness and outlook. Our findings broaden the insight into the underlying elements of the hardships and gains experienced by children with autism and their parents in times of significant life adversity. Programs in such times should be directed at supporting and guiding parents on how to better accommodate to the situation, thereby optimizing their coping strategies and resilience. Lay abstract The lockdown and home isolation due to the COVID-19 pandemic led to significant transformation in lifestyles. Being a parent in this situation was not easy for anyone, much less for parents of children with special needs. The shutting down of special education systems meant that parents lost a vital support network and had to be the sole full-time caregivers despite often lacking the skills to cope with this new and daunting situation. We interviewed parents and learned that the main difficulties faced by homebound autistic children stemmed from the change in routine, lack of special education services, limited physical space, and food- and sleep-related issues. Some children experienced worsening in behavioral, social, and developmental domains, yet others seemed to not only overcome the challenges of changing conditions but even benefit from them. The children’s success or failure was directly related to how their parents coped. The key factors that enabled successful coping were the parents’ ability to accommodate to the child’s needs, their own creativeness and resourcefulness, and a generally positive outlook. The results of this analysis revealed that the best way to benefit autistic children caught up in drastic changes in their routine lifestyle is to invest in a strong support system for their parents.

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Section: Discussionsupporting

confidence: 81%

Section: Discussionmentioning

confidence: 66%

Core experiences of parents of children with autism during the COVID-19 pandemic lockdown

Latzer

Leitner

Karnieli‐Miller

2021

Autism

158

110

View full text Add to dashboard Cite

show abstract

“…Children and adolescents with ASD diagnoses were reported to have the greatest deterioration in depression, irritability, attention, and hyperactivity. This may be due to several factors, including the termination of school-based services (including therapeutic services) for children with ASD, in conjunction with challenges associated with online learning, the closure of respite care services, and disruptions to daily routines [ 38 , 39 ]. More concerning, however, was the significant proportion of children and adolescents with no known pre-COVID mental health or neurodevelopmental challenges who experienced deterioration in a number of mental health domains, with 37–41% experiencing worsening depression, anxiety, irritability, and attention during the emergency measures.…”

Section: Discussionmentioning

confidence: 99%

Mostly worse, occasionally better: impact of COVID-19 pandemic on the mental health of Canadian children and adolescents

Cost

Crosbie

Anagnostou

et al. 2021

Eur Child Adolesc Psychiatry

349

326

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This large cross-sectional study examined the impact of COVID-19 emergency measures on child/adolescent mental health for children/adolescents with and without pre-existing psychiatric diagnoses. Using adapted measures from the CRISIS questionnaire, parents of children aged 6–18 ( N = 1013; 56% male; 62% pre-existing psychiatric diagnosis) and self-reporting children/adolescents aged 10–18 ( N = 385) indicated changes in mental health across six domains: depression, anxiety, irritability, attention, hyperactivity, and obsessions/compulsions. Changes in anxiety, irritability, and hyperactivity were calculated for children aged 2–5 years using the Strengths and Difficulties Questionnaire. COVID-19 exposure, compliance with emergency measures, COVID-19 economic concerns, and stress from social isolation were measured with the CRISIS questionnaire. Prevalence of change in mental health status was estimated for each domain; multinomial logistic regression was used to determine variables associated with mental health status change in each domain. Depending on the age group, 67–70% of children/adolescents experienced deterioration in at least one mental health domain; however, 19–31% of children/adolescents experienced improvement in at least one domain. Children/adolescents without and with psychiatric diagnoses tended to experience deterioration during the first wave of COVID-19. Rates of deterioration were higher in those with a pre-exiting diagnosis. The rate of deterioration was variable across different age groups and pre-existing psychiatric diagnostic groups: depression 37–56%, anxiety 31–50%, irritability 40–66%, attention 40–56%, hyperactivity 23–56%, obsessions/compulsions 13–30%. Greater stress from social isolation was associated with deterioration in all mental health domains (all ORs 11.12–55.24). The impact of pre-existing psychiatric diagnosis was heterogenous, associated with deterioration in depression, irritability, hyperactivity, obsession/compulsions for some children (ORs 1.96–2.23) but also with improvement in depression, anxiety, and irritability for other children (ORs 2.13–3.12). Economic concerns were associated with improvement in anxiety, attention, and obsessions/compulsions (ORs 3.97–5.57). Children/adolescents with and without pre-existing psychiatric diagnoses reported deterioration. Deterioration was associated with increased stress from social isolation. Enhancing social interactions for children/adolescents will be an important mitigation strategy for current and future COVID-19 waves. Supplementary Information The online version contains supplementary material available at 10.1007/s00787-021-01744-3.

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“…Children with NDDs were presumed to be associated more with lifestyle changes and a high level of uncertainty caused by the COVID-19 pandemic than TDC and to have an increased level of maladaptive behaviors 1 . In addition, parents faced additional parenting stress 10 .…”

Section: Alterations Of Child and Parent Qolmentioning

confidence: 99%

The quality of life of children with neurodevelopmental disorders and their parents during the Coronavirus disease 19 emergency in Japan

Ueda

Okada

Kita

et al. 2021

Sci Rep

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This study aimed to reveal how the COVID-19 stay-at-home period has affected the quality of life (QOL) of children with neurodevelopmental disorders and their parents and to identify possible factors that enabled them to maintain their QOL. We enrolled 136 school-aged children (intellectual quotient ≥ 50) and their parents and administered QOL questionnaires to assess the maladaptive behavior of the children; depression, anxiety, and stress of the parents; and activities of their daily lives. The relationship between their QOL and clinical features was examined. The decrease in QOL of children and parents was associated with the mother’s limited job flexibility. Decreased QOL was also associated with changes in the sleep rhythms of the children. Maladaptive behaviors in children were associated with parental stress. However, maintained QOL of some families who faced these same conditions of job stress and sleep disorders was associated with less parental stress, less parental depression and anxiety, and milder maladaptive behavior in children. Both mothers with limited job flexibility and changes in the sleep rhythm of children were associated with reduced QOL of children and their parents. Low parental stress was associated with decreased maladaptive behavior in children and with maintained QOL of the family.

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Autism Spectrum Disorder and COVID-19: Helping Caregivers Navigate the Pandemic

Cited by 24 publications

References 8 publications

Core experiences of parents of children with autism during the COVID-19 pandemic lockdown

Core experiences of parents of children with autism during the COVID-19 pandemic lockdown

Mostly worse, occasionally better: impact of COVID-19 pandemic on the mental health of Canadian children and adolescents

The quality of life of children with neurodevelopmental disorders and their parents during the Coronavirus disease 19 emergency in Japan

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