Analysis of the SPARK study COVID‐19 parent survey: Early impact of the pandemic on access to services, child/parent mental health, and benefits of online services

Abstract

Children with ASD receive a multitude of educational, medical, and therapeutic services. At the onset of the COVID-19 pandemic, all of these services came to a complete halt following strict lockdowns. Many services have resumed in a hybrid format using face to face and virtual modes of delivery. This study describes findings from the COVID-19 impact survey administered at the onset of the pandemic in a subgroup of families from the SPARK cohort (N = 6393), one of the largest ASD cohorts in the US. The differential early impact of COVID-19 on various subgroups of children with ASD and their families was examined. Caregivers of children and adolescents with ASD between 19 months and 18 years completed an online survey inquiring about the impact of COVID-19 pandemic on access to services, parent concerns about the same, impact on child's ASD-related behaviors, child, and parent mental health, and the benefits/potential benefits of online/ future online services. Analysis revealed that certain demographic (age, income/ SES) and child-related factors (repetitive behaviors, language, functional, cognitive, and motor impairments, and child's understanding), as well as parent's past mental health were associated with/predicted greater service disruptions, greater ASD-related behaviors, and greater negative impact on parent mental health. In conclusion, younger children, children from low-income families, and children with greater impairment severity (more severe repetitive behaviors, language, cognitive, function, language, and motor impairments) were more negatively impacted by the pandemic through service disruptions, increased ASD-related behaviors, parent health/family impact, and found online interactions to be less beneficial. Lay SummaryThe SPARK study impact survey shows that at the onset of the COVID-19 pandemic, parents reported significant service disruptions, negative impact on their child's ASD-related behaviors as well as their own mental health; which was greater in families with younger children, children with greater ASD severity, and children from low-income families. Majority of families did not report significant benefits of online services whereas some families did. Low-income families were hopeful about receiving benefits through future online services. Overall, these findings have important implications for future clinical care delivery and healthcare policies to ensure that healthcare services are not interrupted during a potential resurgence of COVID-19 or other pandemics. A combination of inperson and online healthcare and family support services must be implemented to prevent negative health impacts in the future.

CRISIS AFAR: An International Collaborative Study of the Impact of the COVID-19 Pandemic on Youth with Autism and Neurodevelopmental Conditions

“…Most children across subgroups had equivalent baseline symptom severity, average intelligence, and mildly impaired adaptive functioning except for the mostly lost services subgroup which was characterized by greater impairment. These findings are in contrast with earlier ASD studies 10,51 which suggest that pre-existing behavioral challenges related to greater problem behaviors following the pandemic. However, unlike the present effort, prior work focused on samples from relatively narrow geographical areas with largely homogeneous COVID-19 rates and institutional responses.…”

“…Third, our study did not include ASD/NDD preschoolers. Thus, although consistent with a prior report, 51 our results indicate that those in middle-childhood are at greater risk of impact; future studies specifically designed to target younger ages are needed. Finally, the present study focused on impact over the first six months of the pandemic using a cross-sectional design.…”

“…For the remaining participants, symptom changes pre- to pandemic were within the aggregate average - i.e., pandemic-related increases in sleep problems with other symptoms being relatively stable. Consistent with prior literature, 8,9,51 our ASD/NDD sample experienced a variety of service disruptions, across settings, with either loss or telehealth modifications. However, variability was notable.…”

“…With one exception, 20 the first wave of studies documenting the impact of the pandemic on ASD/NDD youth has consistently reported worsening behavioral and/or emotional problems, 12,16,17,49,50 ASD symptoms, 49,51 and/or sleep disruptions. 10,12,50,52 Our results underscore that solely focusing on group-level effects leads to an incomplete picture of the COVID-19 pandemic impact on ASD/NDD.…”

Potential Effects of the COVID-19 Pandemic on the Developing Brain

“…If they do not receive these instructions and/or practice during the sensitive period, catch-up will likely be much more difficult [ 1 ]. In a recent survey, parents of ASD children reported significant service disruptions that negatively impacted children’s behavior and parents’ mental health, with younger children, children with more severe ASD symptoms, and children from lower-income families being most affected [ 19 ].…”