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
Authors: Vibert Bethany , Segura Patricia , Gallagher Louise , Georgiades Stelios , Pervanidou Panagiota , Thurm Audrey , Alexander Lindsay , Anagnostou Evdokia , Aoki Yuta , Birken Catherine S. , Bishop Somer L. , Boi Jessica , Bravaccio Carmela , Brentani Helena , Canevini Paola , Carta Alessandra , Charach Alice , Costantino Antonella , Cost Katherine T. , Cravo Elaine A , Crosbie Jennifer , Davico Chiara , Donno Federica , Fujino Junya , Gabellone Alessandra , Geyer Cristiane T , Hirota Tomoya , Kanne Stephen , Kawashima Makiko , Kelley Elizabeth , Kim Hosanna , Kim Young Shin , Kim So Hyun , Korczak Daphne J. , Lai Meng-Chuan , Margari Lucia , Marzulli Lucia , Masi Gabriele , Mazzone Luigi , McGrath Jane , Monga Suneeta , Morosini Paola , Nakajima Shinichiro , Narzisi Antonio , Nicolson Rob , Nikolaidis Aki , Noda Yoshihiro , Nowell Kerri , Polizzi Miriam , Portolese Joana , Riccio Maria Pia , Saito Manabu , Schwartz Ida , Simhal Anish K. , Siracusano Martina , Sotgiu Stefano , Stroud Jacob , Sumiya Fernando , Tachibana Yoshiyuki , Takahashi Nicole , Takahashi Riina , Tamon Hiroki , Tancredi Raffaella , Vitiello Benedetto , Zuddas Alessandro , Leventhal Bennett , Merikangas Kathleen , Milham Michael P. , Di Martino Adriana 
Published: February 2023

Background

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.

Methods

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.

Results

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.

Limitations

Notable limitations of the study are its cross-sectional nature and focus on the first six months of the pandemic.

Conclusions

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.