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

Abstract

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.

Children and Adolescents with Disabilities and Exposure to Disasters, Terrorism, and the COVID-19 Pandemic: a Scoping Review

“…This additional burden was greater for children with disabilities, such as intellectual disabilities and ASD, due to difficulties related to understanding, communicating, and coping with such changes [ 58 ]. School closures and social distancing resulted in many children with disabilities stopping crucial services and therapies, decreasing class attendance, and interrupting social relationships, academic, and work routines [ 59 , 60 ••, 61 – 65 , 66 •, 67 •, 68 ••]. Additionally, studies reported alterations of sleep patterns [ 61 , 66 •, 67 •, 69 – 74 ], eating habits [ 66 •, 67 •, 75 ], and decreased physical activity [ 67 •, 76 ] among children with disabilities during this time.…”

“…School closures and social distancing resulted in many children with disabilities stopping crucial services and therapies, decreasing class attendance, and interrupting social relationships, academic, and work routines [ 59 , 60 ••, 61 – 65 , 66 •, 67 •, 68 ••]. Additionally, studies reported alterations of sleep patterns [ 61 , 66 •, 67 •, 69 – 74 ], eating habits [ 66 •, 67 •, 75 ], and decreased physical activity [ 67 •, 76 ] among children with disabilities during this time. Child welfare agencies also described decreases in reports of child abuse/neglect, likely due to fewer opportunities for identification posed by school closures, lockdowns, and social distancing [ 77 ].…”

“…As raising children with disabilities is stressful under routine conditions, the additional responsibilities of remote learning, including creating structure and organization, coordinating with teachers and school personnel, home and work demands, and supporting children’s emotions and behaviors, contributed to significant additional burden for these families [ 63 , 66 •, 67 •, 68 ••, 73 , 78 – 89 ]. Studies have shown that stress is buffered by social support [ 90 , 91 ] (including professional support, respite, assistance from family or friends), and as a result of the social distancing and isolation measures implemented during pandemic, many families of children with disabilities experienced heightened stress with minimal aid [ 68 ••, 81 , 83 , 84 , 86 , 87 , 92 – 96 ].…”

“…A nationally representative study in the US found that 14% of parents reported worsening mental health for their children and 27% of parents reported worsening mental health for themselves [ 97 ••]. The majority of studies examining the mental health of children with disabilities during the pandemic identified deleterious outcomes among children with ADHD [ 65 , 67 •, 98 , 99 , 100 ••], ASD [ 66 •, 67 •, 79 , 80 ], intellectual disability [ 101 ], physical disabilities [ 82 , 89 ], Tourette’s syndrome [ 67 •, 72 ], hearing loss [ 102 ], anxiety and obsessive–compulsive disorder (OCD) [ 67 •, 103 ], specific learning difficulties [ 74 ], and with two or more disabilities [ 104 ]. A few reports noted improvement in mental health and behavior among some children with disabilities, likely due to the removal of demands and external stressors [ 64 , 66 •, 105 ].…”

“…The majority of studies examining the mental health of children with disabilities during the pandemic identified deleterious outcomes among children with ADHD [ 65 , 67 •, 98 , 99 , 100 ••], ASD [ 66 •, 67 •, 79 , 80 ], intellectual disability [ 101 ], physical disabilities [ 82 , 89 ], Tourette’s syndrome [ 67 •, 72 ], hearing loss [ 102 ], anxiety and obsessive–compulsive disorder (OCD) [ 67 •, 103 ], specific learning difficulties [ 74 ], and with two or more disabilities [ 104 ]. A few reports noted improvement in mental health and behavior among some children with disabilities, likely due to the removal of demands and external stressors [ 64 , 66 •, 105 ]. Melegari et al found differences in emotional/mood symptoms and behaviors among children with ADHD with different severity symptoms; children with mild symptoms of ADHD before the pandemic significantly worsened in emotional/mood symptoms during the lockdown while participants with moderate and severe symptoms of ADHD showed some improvement during the lockdown [ 99 ].…”