Effect of demographics, impairment severity, and COVID-19 on the treatment patterns of children with Autism Spectrum Disorder (ASD): A SPARK dataset study

Given the rising prevalence of Autism Spectrum Disorder (ASD) and the significant disparities in healthcare access uncovered by the COVID-19 pandemic there is an urgent need to understand the patterns of therapeutic services received (e.g. behavioral/developmental speech occupational/physical and other alternative/complementary approaches) before and during the pandemic. ASD is a multisystem disorder with core diagnostic impairments (i.e. social communication delays and repetitive behaviors) as well as multiple comorbidities/ diagnoses (i.e. motor cognitive etc. and ADHD DCD etc.). It is important to study the effects of demographic criteria (i.e. age SES race/ethnicity geographic location and insurance coverage) as well as impairment severity (i.e. social communication repetitive behaviors cognitive language function and motor) on the pattern (i.e. type intensity and nature) of therapeutic services provided to children with ASD. Parent and child health impact as well as experiences/barriers to receiving services need to be examined. These data have been collected by the Simons Foundation from ~5000 SPARK study families of children with ASD between 3 and 17 years of age at two timepoints 2017 and 2018. After the COVID-19 pandemic SPARK study families (N=~8000) were re-contacted to study the disruption to therapeutic services parent and child health impact parental concerns as well as benefit of online services at multiple timepoints in 2020. These data will provide a wealth of information on which subgroups of children with ASD have greater therapeutic needs in general and which subgroups were most negatively impacted by the COVID-19 pandemic. So far this PI has examined and reported on the SPARK study dataset through two publications. The first paper revealed that motor impairments are pervasive in school-age children with Autism Spectrum Disorder (ASD); and they are often undiagnosed and untreated. Approximately 87% of the SPARK cohort of children with Autism Spectrum Disorder (ASD) the largest ASD cohort in the US is at-risk for a motor impairment and only 13-31% were receiving motor therapies (PT/recreational) (Bhat 2020). Additionally the second paper found that motor impairment increased with increasing social communication cognitive and functional impairments as well as repetitive behavior severity suggesting that motor impairment is closely related to the original neuropathology of ASD and should be considered within its diagnostic framework (Bhat 2021). Around the same time a different research team reported on the pattern (i.e. type intensity and nature) of therapeutic services received by SPARK study participants based on the demographic criteria described earlier (Monz et al. 2019). However Monz et al. Did not examine the relationship between impairment severity and the patterns of services received. Additionally a recent paper on the COVID survey from the SPARK study reported data on the entire sample and did not describe differences across subgroups of children with ASD (White et al. 2021). Findings on treatment patterns before and during the pandemic will help inform the clinical community on which subgroups of children with ASD remain underserved (e.g. low SES certain race/ethnicities and those with greater severity or certain type of impairment/comorbid diagnos(es)). Based on our findings we will recommend more focused efforts through state or national programs to reduce barriers and increase access to therapeutic services for the underserved or more affected populations.

Bhat A. 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. Autism Res. 2021;14(11):2454-2470. doi:10.1002/aur.2618 DOI:10.1002/aur.2618 November 2021 34591364

Atchison KA, Bhoopathi V, Wells CR. Hospital emergency department visits made by developmentally disabled adolescents with oral complications. Front Oral Health. 2022;3:955584. doi:10.3389/froh.2022.955584 DOI:10.3389/froh.2022.955584 August 2022 36046122