CRISIS AFAR: an international collaborative study of the impact of the COVID-19 pandemic on mental health and service access in youth with autism and neurodevelopmental conditions.

This study looked at how COVID-19 affected 1,275 autistic children and teens across multiple countries. Researchers found four different groups: one group (20%) had worsening symptoms but kept most services, while the other three groups stayed more stable but had different experiences with services - some had modified services, some lost services, and others had average changes. The study shows that autistic young people were affected differently by the pandemic.

This international cross-sectional study examined COVID-19's impact on mental health and service access in 1,275 youth with autism spectrum disorder and related neurodevelopmental disorders across 14 European and North American sites. Using hierarchical clustering analysis of the CRISIS-AFAR survey, researchers identified four distinct outcome subgroups during the pandemic's first six months. One subgroup (20%) experienced broad symptom worsening while maintaining typical service access. Three other subgroups remained clinically stable but differed in service modifications: modified services (23%), lost services (6%), and average changes (53%).

Predictive factors included pre-pandemic service use, pandemic environment factors, COVID-19 worries, and age, with each subgroup showing distinct prediction patterns.

Results suggest need for differentiated crisis response strategies rather than universal approaches. Service modifications may be preferable to complete cessation. Predictive factors could inform risk stratification and targeted interventions during future crises. Emphasizes importance of maintaining service access for vulnerable populations.

Cross-sectional design limits causal inferences. Focus on first six months may not capture longer-term impacts. Parent-reported outcomes may introduce bias. Sample characteristics and recruitment methods not fully detailed in abstract.

Heterogeneous mental health outcomes during the COVID-19 pandemic are documented in the general population. Such heterogeneity has not been systematically assessed in youth with autism spectrum disorder (ASD) and related neurodevelopmental disorders (NDD). To identify distinct patterns of the pandemic impact and their predictors in ASD/NDD youth, we focused on pandemic-related changes in symptoms and access to services. Using a naturalistic observational design, we assessed parent responses on the Coronavirus Health and Impact Survey Initiative (CRISIS) Adapted For Autism and Related neurodevelopmental conditions (AFAR).

Cross-sectional AFAR data were aggregated across 14 European and North American sites yielding a clinically well-characterized sample of N = 1275 individuals with ASD/NDD (age = 11.0 ± 3.6 years; n females = 277). To identify subgroups with differential outcomes, we applied hierarchical clustering across eleven variables measuring changes in symptoms and access to services. Then, random forest classification assessed the importance of socio-demographics, pre-pandemic service rates, clinical severity of ASD-associated symptoms, and COVID-19 pandemic experiences/environments in predicting the outcome subgroups. Clustering revealed four subgroups.

One subgroup-broad symptom worsening only (20%)-included youth with worsening across a range of symptoms but with service disruptions similar to the average of the aggregate sample. The other three subgroups were, relatively, clinically stable but differed in service access: primarily modified services (23%), primarily lost services (6%), and average services/symptom changes (53%). Distinct combinations of a set of pre-pandemic services, pandemic environment (e.g., COVID-19 new cases, restrictions), experiences (e.g., COVID-19 Worries), and age predicted each outcome subgroup. Notable limitations of the study are its cross-sectional nature and focus on the first six months of the pandemic.

Concomitantly assessing variation in changes of symptoms and service access during the first phase of the pandemic revealed differential outcome profiles in ASD/NDD youth. Subgroups were characterized by distinct prediction patterns across a set of pre- and pandemic-related experiences/contexts. Results may inform recovery efforts and preparedness in future crises; they also underscore the critical value of international data-sharing and collaborations to address the needs of those most vulnerable in times of crisis.