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.
Creators: name: Vibert, Bethany
name: Segura, Patricia
name: Gallagher, Louise
name: Georgiades, Stelios
name: Pervanidou, Panagiota
name: Thurm, Audrey
name: Alexander, Lindsay
name: Anagnostou, Evdokia
name: Aoki, Yuta
name: Birken, Catherine S
name: Bishop, Somer L
name: Boi, Jessica
name: Bravaccio, Carmela
name: Brentani, Helena
name: Canevini, Paola
name: Carta, Alessandra
name: Charach, Alice
name: Costantino, Antonella
name: Cost, Katherine T
name: Cravo, Elaine A
name: Crosbie, Jennifer
name: Davico, Chiara
name: Donno, Federica
name: Fujino, Junya
name: Gabellone, Alessandra
name: Geyer, Cristiane T
name: Hirota, Tomoya
name: Kanne, Stephen
name: Kawashima, Makiko
name: Kelley, Elizabeth
name: Kim, Hosanna
name: Kim, Young Shin
name: Kim, So Hyun
name: Korczak, Daphne J
name: Lai, Meng-Chuan
name: Margari, Lucia
name: Marzulli, Lucia
name: Masi, Gabriele
name: Mazzone, Luigi
name: McGrath, Jane
name: Monga, Suneeta
name: Morosini, Paola
name: Nakajima, Shinichiro
name: Narzisi, Antonio
name: Nicolson, Rob
name: Nikolaidis, Aki
name: Noda, Yoshihiro
name: Nowell, Kerri
name: Polizzi, Miriam
name: Portolese, Joana
name: Riccio, Maria Pia
name: Saito, Manabu
name: Schwartz, Ida
name: Simhal, Anish K
name: Siracusano, Martina
name: Sotgiu, Stefano
name: Stroud, Jacob
name: Sumiya, Fernando
name: Tachibana, Yoshiyuki
name: Takahashi, Nicole
name: Takahashi, Riina
name: Tamon, Hiroki
name: Tancredi, Raffaella
name: Vitiello, Benedetto
name: Zuddas, Alessandro
name: Leventhal, Bennett
name: Merikangas, Kathleen
name: Milham, Michael P
name: Di Martino, Adriana
Publisher: name: Apollo - University of Cambridge Repository
Year: 2023
Subjects: Autism spectrum disorder
Behavioral problems
COVID-19 pandemic
Mental health outcomes
Neurodevelopmental conditions
Prediction
Public health
Risk and resilience factors
Sleep
Female
Humans
Adolescent
Child
Mental Health
COVID-19
Autistic Disorder
Pandemics
Autism Spectrum Disorder
Cross-Sectional Studies

description: 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.