Impact of the COVID-19 Pandemic on Children and Adolescents with Autism Spectrum Disorder and Their Families: a Mixed-methods Study Protocol

Overview

Journal BMJ Open

Specialty General Medicine

Date 2022 Jan 26

PMID 35078834

Authors

Linda Dekker

Linde Hooijman

Anneke Louwerse

Kirsten Visser

Dennis Bastiaansen

Leontine Ten Hoopen

Pieter de Nijs

Gwen Dieleman

Wietske Ester

Susan Van Rijen

Femke Truijens

Ruth Van der Hallen

Affiliations

Soon will be listed here.

Abstract

Background: The COVID-19 pandemic is a challenge for everyone, particularly for children and adolescents with autism spectrum disorder (ASD). ASD is a developmental disorder characterised by limitations in social communication, repetitive behavioural patterns, and limited interests, and activities. It is expected that many families with children with ASD will experience more problems due to the COVID-19 pandemic and the related public health restrictions. At the same time, some may experience improved functioning, due to fewer expectations and social demands.

Methods/design: In a mixed-method study to identify the impact of the COVID-19 pandemic, parents of children with ASD (ages 4-21) who were in care pre-COVID-19 at one of three large mental healthcare institutions in the region of Rotterdam participated (68 for T0, 57 for T1). The aims are (1) to investigate the impact of the COVID-19 pandemic on overall functioning and autistic symptoms of the child/adolescent with ASD, as well as parental and family functioning (QUANT-QUAL), in both the short term and longer term, and (2) to investigate risk and protective factors (in light of resilience) (QUANT-qual) and (3) to investigate care and informational needs (QUAL-quant). Pre-COVID-19 baseline data will be retrieved from clinical records. Participants will fill out two surveys (one during a COVID-19 peak-January-May 2021-and one thereafter). Survey participants were invited to participate in interviews (n=27). Surveys include measures thar were included pre-COVID-19 (ie, overall functioning and autism symptoms) as well as specific measures to identify family functioning and COVID-19 impact. The semistructured interviews focus on child, parent and family functioning and care-and informational needs.

Ethics And Dissemination: The Medical Ethics Committee of the Erasmus MC has approved the study. Findings will be available to families of children with ASD, their care providers, the funders, autism societies, the government and other researchers.

Citing Articles

Effects of Covid-19 pandemic on nutritional habits, lifestyle changes and dental trauma frequency of children with autism: a cross-sectional study.

Cerci Akcay H, Safci D, Kasimoglu Y, Aren G, Guloglu R, Coskun M BMC Oral Health. 2025; 25(1):331.

PMID: 40038593 PMC: 11877841. DOI: 10.1186/s12903-025-05697-w.

Sentiment analysis of post-COVID-19 health information needs of autism spectrum disorder community: insights from social media discussions.

Larnyo E, Nutakor J, Addai-Dansoh S, Nkrumah E Front Psychiatry. 2024; 15:1441349.

PMID: 39465051 PMC: 11502369. DOI: 10.3389/fpsyt.2024.1441349.

Experiences of caregivers of children with autism during the COVID-19 pandemic: A scoping review.

Berson J, Adams S S Afr J Commun Disord. 2024; 71(1):e1-e12.

PMID: 39099285 PMC: 11304107. DOI: 10.4102/sajcd.v71i1.1017.

Effects of COVID-19 on Autism Spectrum Disorder in Qatar.

Alshaban F, Ghazal I, Al-Harahsheh S, Lotfy M, Al-Shammari H, Al-Faraj F Front Psychiatry. 2024; 15:1322011.

PMID: 38445086 PMC: 10913057. DOI: 10.3389/fpsyt.2024.1322011.

Anxiety, concerns and COVID-19: Cross-country perspectives from families and individuals with neurodevelopmental conditions.

Sideropoulos V, Van Herwegen J, Meuleman B, Alessandri M, Alnemary F, Rad J J Glob Health. 2023; 13:04081.

PMID: 37497751 PMC: 10373111. DOI: 10.7189/jogh.13.04081.

References

Mumbardo-Adam C, Barnet-Lopez S, Balboni G . How have youth with Autism Spectrum Disorder managed quarantine derived from COVID-19 pandemic? An approach to families perspectives. Res Dev Disabil. 2021; 110:103860. PMC: 9758011. DOI: 10.1016/j.ridd.2021.103860. View

Midouhas E, Yogaratnam A, Flouri E, Charman T . Psychopathology trajectories of children with autism spectrum disorder: the role of family poverty and parenting. J Am Acad Child Adolesc Psychiatry. 2013; 52(10):1057-1065.e1. DOI: 10.1016/j.jaac.2013.07.011. View

Walton K, Tiede G . Brief report: Does "healthy" family functioning look different for families who have a child with autism?. Res Autism Spectr Disord. 2020; 72. PMC: 7051022. DOI: 10.1016/j.rasd.2020.101527. View

Piper B, Gray H, Raber J, Birkett M . Reliability and validity of Brief Problem Monitor, an abbreviated form of the Child Behavior Checklist. Psychiatry Clin Neurosci. 2014; 68(10):759-67. PMC: 4182328. DOI: 10.1111/pcn.12188. View

Asbury K, Fox L, Deniz E, Code A, Toseeb U . How is COVID-19 Affecting the Mental Health of Children with Special Educational Needs and Disabilities and Their Families?. J Autism Dev Disord. 2020; 51(5):1772-1780. PMC: 7393330. DOI: 10.1007/s10803-020-04577-2. View

Lai M, Kassee C, Besney R, Bonato S, Hull L, Mandy W . Prevalence of co-occurring mental health diagnoses in the autism population: a systematic review and meta-analysis. Lancet Psychiatry. 2019; 6(10):819-829. DOI: 10.1016/S2215-0366(19)30289-5. View

Bastiaansen D, Koot H, Bongers I, Varni J, Verhulst F . Measuring quality of life in children referred for psychiatric problems: psychometric properties of the PedsQL 4.0 generic core scales. Qual Life Res. 2004; 13(2):489-95. DOI: 10.1023/B:QURE.0000018483.01526.ab. View

Duvekot J, van der Ende J, Verhulst F, Greaves-Lord K . The Screening Accuracy of the Parent and Teacher-Reported Social Responsiveness Scale (SRS): Comparison with the 3Di and ADOS. J Autism Dev Disord. 2014; 45(6):1658-72. DOI: 10.1007/s10803-014-2323-3. View

Nonweiler J, Rattray F, Baulcomb J, Happe F, Absoud M . Prevalence and Associated Factors of Emotional and Behavioural Difficulties during COVID-19 Pandemic in Children with Neurodevelopmental Disorders. Children (Basel). 2020; 7(9). PMC: 7552706. DOI: 10.3390/children7090128. View

10.

Cassidy S, Nicolaidis C, Davies B, Rosa S, Eisenman D, Onaiwu M . An Expert Discussion on Autism in the COVID-19 Pandemic. Autism Adulthood. 2023; 2(2):106-117. PMC: 8992856. DOI: 10.1089/aut.2020.29013.sjc. View

11.

Waite P, Pearcey S, Shum A, Raw J, Patalay P, Creswell C . How did the mental health symptoms of children and adolescents change over early lockdown during the COVID-19 pandemic in the UK?. JCPP Adv. 2021; 1(1):e12009. PMC: 8206715. DOI: 10.1111/jcv2.12009. View

12.

den Houting J . Stepping Out of Isolation: Autistic People and COVID-19. Autism Adulthood. 2023; 2(2):103-105. PMC: 8992855. DOI: 10.1089/aut.2020.29012.jdh. View

13.

Usher K, Bhullar N, Jackson D . Life in the pandemic: Social isolation and mental health. J Clin Nurs. 2020; 29(15-16):2756-2757. DOI: 10.1111/jocn.15290. View

14.

Fetters M, Curry L, Creswell J . Achieving integration in mixed methods designs-principles and practices. Health Serv Res. 2013; 48(6 Pt 2):2134-56. PMC: 4097839. DOI: 10.1111/1475-6773.12117. View

15.

van Schalkwyk G, Marin C, Ortiz M, Rolison M, Qayyum Z, McPartland J . Social Media Use, Friendship Quality, and the Moderating Role of Anxiety in Adolescents with Autism Spectrum Disorder. J Autism Dev Disord. 2017; 47(9):2805-2813. PMC: 6688174. DOI: 10.1007/s10803-017-3201-6. View

16.

Roskam I, Raes M, Mikolajczak M . Exhausted Parents: Development and Preliminary Validation of the Parental Burnout Inventory. Front Psychol. 2017; 8:163. PMC: 5298986. DOI: 10.3389/fpsyg.2017.00163. View

17.

Dakin S, Frith U . Vagaries of visual perception in autism. Neuron. 2005; 48(3):497-507. DOI: 10.1016/j.neuron.2005.10.018. View

18.

Williams S, Armitage C, Tampe T, Dienes K . Public perceptions of non-adherence to pandemic protection measures by self and others: A study of COVID-19 in the United Kingdom. PLoS One. 2021; 16(10):e0258781. PMC: 8553167. DOI: 10.1371/journal.pone.0258781. View

19.

Wright B, Spikins P, Pearson H . Should Autism Spectrum Conditions Be Characterised in a More Positive Way in Our Modern World?. Medicina (Kaunas). 2020; 56(5). PMC: 7279498. DOI: 10.3390/medicina56050233. View

20.

Fong V, Gardiner E, Iarocci G . Satisfaction with informal supports predicts resilience in families of children with autism spectrum disorder. Autism. 2020; 25(2):452-463. DOI: 10.1177/1362361320962677. View