CRISIS AFAR: An International Collaborative Study of the Impact of the COVID-19 Pandemic on 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.N. , Bishop Somer L. , Boi Jessica , Bravaccio Carmela , Brentani Helena , Canevini Paola , Carta Alessandra , Charach Alice , Costantino Antonella , Cost Katherine T. , Cravo Elaine Andrade , Crosbie Jennifer , Davico Chiara , Gabellone Alessandra , Donno Federica , Fujino Junya , Geyer Cristiane Tezzari , Hirota Tomoya , Kanne Stephen , Kawashima Makiko , Kelley Elizabeth , Kim Hosanna , Kim Young Shin , Kim So Hyun (Sophy) , Korczak Daphne J. , Lai Meng-Chuan , Margari Lucia , Masi Gabriele , Marzulli Lucia , 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 , Simhal Anish K. , Siracusano Martina , Sotgiu Stefano , Stroud Jacob , Sumiya Fernando , Schwartz Ida , 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: April 2022

Importance

Heterogeneous mental health outcomes during the COVID-19 pandemic are recognized in the general population, but it has not been systematically assessed in youth with neurodevelopmental disorders (NDD), including autism spectrum (ASD).

Objective

Identify subgroups of youth with ASD/NDD based on the pandemic impact on symptoms and service changes, as well as predictors of outcomes.

Design, Setting, and Participants

This is a naturalistic observational study conducted across 14 North American and European clinical and/or research sites. Parent responses on the Coronavirus Health and Impact Survey Initiative (CRISIS) adapted for Autism and Related Neurodevelopmental Conditions (AFAR) were cross-sectionally collected from April to October 2020. The sample included 1275, 5-21 year-old youth with ASD and/or NDD who were clinically well-characterized prior to the pandemic.

Main Outcomes and Measures

To identify impact subgroups, hierarchical clustering analyzed eleven AFAR factors measuring pre- to pandemic changes in clinically relevant symptoms and service access. Random forest classification assessed the relative contribution in predicting subgroup membership of 20 features including socio-demographics, pre-pandemic service, and clinical severity along with indices of COVID-19 related experiences and environments empirically-derived from AFAR parent responses and global open sources.

Results

Clustering analyses revealed four ASD/NDD impact subgroups. One subgroup - broad symptom worsening only (20% of the aggregate sample) - included youth with worsening symptoms that were above and beyond that of their ASD/NDD peers and with similar service disruptions as those in the aggregate average. The three other subgroups showed symptom changes similar to the aggregate average but differed in service access: primarily modified services (23%), primarily lost services (6%), and average services/symptom changes (53%). Pre-pandemic factors (e.g., number of services), pandemic environments and experiences (e.g., COVID-19 cases, related restrictions, COVID-19 Worries), and age emerged in unique combinations as distinct protective or risk factors for each subgroup. Together they highlighted the role of universal risk factors, such as risk perception, and the protective role of services before and during the pandemic, in middle childhood.

Conclusions and Relevance

Concomitant assessment of changes in both symptoms and services access is critical to understand heterogeneous impact of the pandemic on ASD/NDD youth. It enabled the delineation of pathways to risk and resilience that include universal and ASD/NDD specific contributors.