Autistic children and adolescents and their parents are likely to have been disproportionally affected during the COVID-19 pandemic. There has been little focus on how the mental health of these vulnerable families developed during the pandemic and how it compared to those with other special educational needs and disabilities. Questionnaires were completed by a maximum of 527 parents/carers about their own and their child’s mental health at one or more time points between 23 March 2020 (at the onset of the first lockdown) and 10 October 2020 (when schools fully reopened for face-to-face teaching). Multi-level regression models were fitted to the data. Autistic young people had more depression and anxiety symptoms compared to young people with other special educational needs and disabilities throughout the study period. As lockdown progressed and schools subsequently reopened for face-to-face teaching, anxiety levels decreased for young people with special educational needs and disabilities but not for autistic young people, whose anxiety levels remained stable throughout. Depression symptoms, however, remained stable for both groups during this period as did parents’/carers’ psychological distress and well-being. These findings shed new light on the likely disproportionate effect of the COVID-19 pandemic on anxiety levels in autistic young people. Lay abstract Autistic children and adolescents, and their parents/carers, tend to experience more symptoms of anxiety and depression compared to those with other special educational needs and disabilities. The rapid change in society as a result of the COVID-19 pandemic is likely to have disproportionately affected autistic young people and their parents/carers. We investigated how the mental health of autistic young people, and their parents/carers, developed during the first lockdown in the United Kingdom and how it changed once schools fully reopened for face-to-face teaching approximately 6 months later. Parents/carers completed online standardised questionnaires about their own and their child’s mental health at four time points between March 2020 and October 2020. We found that, throughout this period, autistic young people experienced more symptoms of anxiety and depression compared to those with other special educational needs and disabilities. Anxiety levels decreased as lockdown progressed and schools reopened for face-to-face teaching but only for those with other special educational needs and disabilities. For autistic young people, both anxiety and depression symptoms remained high throughout. There were no differences in the mental health of parents/carers of autistic children compared to those with other special educational needs and disabilities. These findings suggest that the mental health of autistic children and adolescents is likely to have been disproportionately affected during and after the first lockdown in the United Kingdom. In the second part of this article (Asbury & Toseeb, 2022), we attempt to explain these trends using qualitative data provided by parents during the same period.

https://doi.org/10.1177/13623613221082715

A longitudinal study of the mental health of autistic children and adolescents and their parents during COVID-19: Part 1, quantitative findings

This study examined whether certain demographic characteristics, caregiver strain, and coping behaviors were associated with the mental health outcomes of family caregivers of children with disabilities in Bolivia during the COVID-19 pandemic. A mixed-methods convergent study design was used with virtual interviews to quantitatively assess caregivers' demographic characteristics, caregiver strain, coping behaviors, and mental health outcomes, as well as qualitatively assess how the pandemic affected their family. Approximately 32%-71% of caregivers experienced poor mental health outcomes (stress, anxiety, and depression), especially among those experiencing poor health, high caregiver strain, and those using maladaptive coping strategies. Qualitative responses revealed that they experienced several unique stressors during the pandemic that affected them and their children. These findings highlight the need for culturally tailored prevention and treatment interventions to help offset the adverse effects of the COVID-19 pandemic on the mental health outcomes of this at-risk population.

https://onlinelibrary.wiley.com/doi/pdf/10.1002/jcop.22763

Mental health outcomes and experiences of family caregivers of children with disabilities during the COVID-19 pandemic in Bolivia

Background:COVID-19 has caused great changes in all aspects of life which affected all people especially vulnerable groups such as children with disabilities (CWD) and their families.Objective:This...

https://journals.sagepub.com/doi/pdf/10.1177/21501327211043039

Challenges Facing Family Caregivers of Children With Disabilities During COVID-19 Pandemic in Palestine.

The coronavirus disease 2019 (COVID-19) pandemic has thrown out a challenge to caregivers of children with attention-deficit/hyperactivity disorder (ADHD). The present study examined the factors related to the poor general mental health state of the caregivers of children with ADHD during the COVID-19 pandemic, including (1) difficulties of caregivers in asking their child to adopt protective behaviors against COVID-19, (2) difficulties of caregivers in managing the child's daily performance, and (3) worsened psychological symptoms in children. In total, 161 caregivers completed an online questionnaire to provide data regarding their general mental health state and difficulties in asking their child with ADHD to adopt protective behaviors against COVID-19 and in managing the child's after-school learning, sleep routine, and internet use, as well as worsened psychological symptoms. The results of multivariate logistic regression analysis demonstrated that caregivers' difficulties in managing ADHD children's self-protective behaviors and after-school learning and the children's worsened emotional symptoms were significantly associated with poor caregiver general mental health state. An intervention that enhances the mental health of caregivers of children with ADHD during the COVID-19 pandemic by addressing their difficulties in managing the children's behaviors and psychological problems is warranted.

Poor Mental Health in Caregivers of Children with Attention-Deficit/Hyperactivity Disorder and Its Relationships with Caregivers' Difficulties in Managing the Children's Behaviors and Worsened Psychological Symptoms during the COVID-19 Pandemic.

Background Caring for a child with disability is a challenging journey as these parents must meet greater demands when compared to parents of typically developed children. Looking after a child with disability requires additional financial, social, emotional and physical resources. Coronavirus 2019 (COVID -19) has made it more challenging to meet such demands. Methods In all 301 parents of children between the age range of 2 years and 18 years were allocated for the study through convenient sampling at a tertiary hospital. Two groups of parents were identified: parents of typical and atypical children with 151 in group of parents with typically developing and 150 in the group of parents of children with disabilities. The study was an analytical cross-sectional design with a comparison group. The Urdu version of World Health Organization Quality of Life Measure Abbreviated version (WHO-QOL BREF) (Lodhi et al., 2017) was used to measure the quality of life (QOL) among parents. Sociodemographic data was also obtained from the parents. Results Parents of children with disabilities scored lower overall when different domains of quality of life were considered (physical health, psychological health, social relationships, and environment) using WHO-Quality of Life (QoL)BREF. Statistically significant differences were observed in the physical and environmental domains of parental QoL.

/pdf/assessing-the-quality-of-life-of-parents-of-children-with-f29t443ls5.pdf

Assessing the Quality of Life of Parents of Children With Disabilities Using WHOQoL BREF During COVID-19 Pandemic

The COVID-19 pandemic has presented many challenges to caregivers of children. Families with children with attention-deficit/hyperactivity disorder (ADHD) and/or autism spectrum disorder (ASD) are an understudied but potentially vulnerable population to changes during the outbreak. As such, the aim of this study was to contrast quality of life for caregivers of children with ADHD and/or ASD, before and during the pandemic, compared to caregivers of neurotypical (NT) children. Total, Parent Health-Related Quality of Life, and Family Functioning Summary Scores from the Family Impact Module of the Pediatric Quality of Life InventoryTM were contrasted among caregivers of children with ADHD, ASD, comorbid ADHD and ASD, and NT development. For all scores, caregivers of ADHD and/or ASD children reported lower quality of life, both before and during the pandemic, in comparison to caregivers of NT children. For all diagnoses, quality of life decreased during the pandemic, but caregivers of children with ADHD and/or ASD reported a greater decrease in quality of life than caregivers for NT children. There are limitations to this study in terms of the composition of the sample and the survey methodology, but we are able to conclude that caregivers of children with ADHD and/or ASD have been disproportionately affected by the pandemic, and it is imperative that these families receive additional resources and support to improve their quality of life.

https://www.mdpi.com/1660-4601/18/7/3667/pdf

Quality of Life Changes during the COVID-19 Pandemic for Caregivers of Children with ADHD and/or ASD.

Purpose Differences in communication development impact long-term outcomes of children with autism. Previous research has identified factors associated with communication in children with autism, but much of the variance in communication skill remains unexplained. It has been proposed that early differences in sensory responsiveness (i.e., hyporesponsiveness, hyperresponsiveness, and sensory seeking) may produce "cascading effects" on communication. Evidence for this theory is limited, however, as relations between sensory responsiveness and communication in the earliest stages of development have not been well established. The purpose of this study was to evaluate (a) whether infants with a heightened likelihood of autism diagnosis (i.e., infants with an older sibling with autism) differ from infants at general population-level likelihood of autism (i.e., infants with an older, nonautistic sibling) on patterns of sensory responsiveness, (b) whether early sensory responsiveness is correlated with concurrent communication, and (c) whether the aforementioned between-groups differences and associations are moderated by age. Method Participants were 40 infants (20 infants with an older sibling with autism, 20 infants with an older, nonautistic sibling) aged 12-18 months. A series of observational and parent report measures of sensory responsiveness and communication skill were administered. Results Group differences in sensory responsiveness across the 12- to 18-month period were limited (i.e., only observed for one measure of hyporesponsiveness), though selected differences in sensory responsiveness (i.e., parent-reported hyperresponsiveness and sensory seeking) emerged between groups over this developmental window. Parent-reported hyporesponsiveness was unconditionally, negatively associated with communication skills. Associations between expressive communication and (a) parent-reported sensory seeking and (b) an observational measure of hyperresponsiveness were moderated by age. Conclusions This study provides new insights into the nature of sensory responsiveness and theorized links with communication skill in infants at elevated and general population-level likelihood of autism diagnosis. Further work is needed to better characterize the effects of interest in a larger sample spanning a wider age range. Supplemental Material https://doi.org/10.23641/asha.14515542.

Sensory Responsiveness Is Linked With Communication in Infant Siblings of Children With and Without Autism

Early differences in sensory responsiveness may contribute to difficulties with communication among autistic children; however, this theory has not been longitudinally assessed in infants at increased familial versus general population-level likelihood for autism (Sibs-autism vs. Sibs-NA) using a comprehensive battery of sensory responsiveness and communication. In a sample of 40 infants (20 Sibs-autism, of whom six were later diagnosed with autism; 20 Sibs-NA), we tested (a) associations between sensory responsiveness at 12-18 months and communication 9 months later and (b) evaluated whether such associations were moderated by sibling group, autism diagnosis, or age. We found negative zero-order correlations between sensory responsiveness (i.e., caregiver reported hyperresponsiveness and hyporesponsiveness; an observational measure of hyperresponsiveness) and later communication. Additionally, caregiver reported sensory seeking was negatively associated with later expressive communication only in Sibs-NA. Limitations include our relatively small sample size of infants diagnosed with autism. Implications for future research are discussed. 

/pdf/longitudinal-relations-between-early-sensory-responsiveness-2ybcf9xe.pdf

Varsha Garla

Papers

Quality of Life Changes during the COVID-19 Pandemic for Caregivers of Children with ADHD and/or ASD.

Sensory Responsiveness Is Linked With Communication in Infant Siblings of Children With and Without Autism

Longitudinal Relations Between Early Sensory Responsiveness and Later Communication in Infants with Autistic and Non-autistic Siblings