Abstract
This study examined caregivers' lived experiences during the initial weeks of stay-at-home mandates within the unique socio-cultural and healthcare context of the United States.To learn about the experiences of caregivers during the early stages of the COVID-19 pandemic, we conducted seventeen semi-structured interviewswith caregivers of young children with autism (ages 3–8) in Illinois.The inability to meet demands, the abrupt loss of social and therapeutic support, and the loss of opportunities for leisure and self-care took an emotional toll on the caregivers and the families. Although four caregivers attributed positive changes in their lives to the lockdown (e.g., more family time and improved academic standing for their child), the reported negative impacts overshadowed the positives. To foster resilience and reduce the adverse long-term effects of world-changing events on families of young children with autism, the information gleaned from this study can inform educators, service providers, and other concerned parties about unique considerations when creating future proactive and responsive support measures.
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Data Availability
The qualitative data is not publicly available to protect the participants' confidentiality, but summary findings (e.g., member checks) and relevant anonymized excerpts can be requested from the corresponding author. The codebook for data analysis is also accessible in Supplementary file 3.
References
Al-Beltagi, M., Saeed, N. K., Bediwy, A. S., Alhawamdeh, R., & Qaraghuli, S. (2022). Effects of COVID-19 on children with autism. World Journal of Virology, 11(6), 411–425. https://doi.org/10.5501/wjv.v11.i6.411
Ameis, S. H., Lai, M. C., Mulsant, B. H., & Szatmari, P. (2020). Co**, fostering resilience, and driving care innovation for autistic people and their families during the COVID-19 pandemic and beyond. Molecular Autism, 11(1), 1–9. https://doi.org/10.1186/s13229-020-00365-y
Asbury, K., Fox, L., Deniz, E., Code, A., & Toseeb, U. (2021). How is COVID-19 affecting the mental health of children with special educational needs and disabilities and their families? Journal of Autism and Developmental Disorders, 51(5), 1772–1780. https://doi.org/10.1007/s10803-021-04840-x
Aylward, B. S., Gal-Szabo, D. E., & Taraman, S. (2021). Racial, Ethnic, and Sociodemographic Disparities in Diagnosis of Children with Autism Spectrum Disorder. Journal of Developmental and Behavioral Pediatrics : JDBP, 42(8), 682–689.
Bayat, M. (2007). Evidence of resilience in families of children with autism. Journal of Intellectual Disability Research, 51(9), 702–714. https://doi.org/10.1111/j.1365-2788.2007.00960.x
Bellomo, T. R., Prasad, S., Munzer, T., & Laventhal, N. (2020). The impact of the COVID-19 pandemic on children with autism spectrum disorders. Journal of Pediatric Rehabilitation Medicine, (Preprint), 1–6. https://doi.org/10.3233/PRM-200740
Berg, B. L., & Lune, H. (2007). Qualitative research methods for the social sciences (6th ed.). Pearson.
Boisvert, M., Lang, R., Andrianopoulos, M., & Boscardin, M. L. (2010). Telepractice in the assessment and treatment of individuals with autism spectrum disorders: A systematic review. Developmental Neurorehabilitation, 13(6), 423–432. https://doi.org/10.3109/17518423.2010.499889
Boyd, B. A. (2002). Examining the relationship between stress and lack of social support in mothers of children with autism. Focus on Autism and other Developmental Disabilities, 17(4), 208–215. https://doi.org/10.1177/10883576020170040301
Brantlinger, E., Jimenez, R., Klingner, J., Pugach, M., & Richardson, V. (2005). Qualitative studies in special education. Exceptional Children, 71(2), 195–207. https://doi.org/10.1177/001440290507100205
Braun, V., & Clarke, V. (2006). Using thematic analysis in psychology. Qualitative Research in Psychology, 3(2), 77–101. https://doi.org/10.1191/1478088706qp063oa
Brobst, J. B., Clopton, J. R., & Hendrick, S. S. (2009). Parenting children with autism spectrum disorders: The couple’s relationship. Focus on Autism and Other Developmental Disabilities, 24(1), 38–49. https://doi.org/10.1177/1088357608323699
Bronfenbrenner, U. (1999). Environments in developmental perspective: Theoretical and operational models. In S. L. Friedman & T. D. Wachs (Eds.), Measuring environment across the life span: Emerging methods and concepts (pp. 3–28). American Psychological Association Press. https://doi.org/10.1037/10317-001
Browne, D. T., Plamondon, A., Prime, H., Puente-Duran, S., & Wade, M. (2015). Cumulative risk and developmental health: An argument for the importance of a family-wide science. Wiley Interdisciplinary Reviews: Cognitive Science, 6(4), 397–407. https://doi.org/10.1002/wcs.1349
Centers for Disease Control and Prevention (CDC). (2022, August 11). COVID-19 Understanding Risk. https://www.cdc.gov/coronavirus/2019-ncov/your-health/understanding-risk.html
Chung, M. Y., Lee, J. D., Meadan, H., Sands, M. M., & Haidar, B. S. (2022). Building professionals’ capacity: The cascading coaching model. Journal of Positive Behavior Interventions, 24(4), 313–324. https://doi.org/10.1177/10983007211039295
Colizzi, M., Sironi, E., Antonini, F., Ciceri, M. L., Bovo, C., & Zoccante, L. (2020). The psychosocial and behavioral impact of COVID-19 in autism spectrum disorder: An online parent survey. Brain Sciences, 10(6), 341. https://doi.org/10.3390/brainsci10060341
Colombo, R. A., Wallace, M., & Taylor, R. (2020). An essential service decision model for ABA providers during crisis. Behavior Analysis in Practice, 13, 306–311. https://doi.org/10.1007/s40617-020-00432-z
Creswell, J. W. (1994). Research design: Qualitative and quantitative approaches. SAGE Publications.
de Sousa Lima, M. E., Barros, L. C. M., & Aragão, G. F. (2020). Could autism spectrum disorders be a risk factor for COVID-19? Medical Hypotheses, 144, 109899. https://doi.org/10.1016/j.mehy.2020.109899
Donohue, J. M., & Miller, E. (2020). COVID-19 and school closures. Journal of the American Medical Association, 324(9), 845–847. https://doi.org/10.1001/jama.2020.13092
Education Week. (2020, July 28). Map: where were schools required to be open for the 2020-21 school year? State-by-state map of where school buildings were open or closed. Updated: June 14, 2021. Retrieved from https://www.edweek.org/leadership/map-where-are-schools-closed/2020/07
Ellison, K. S., Guidry, J., Picou, P., Adenuga, P., & Davis, T. E., 3rd. (2021). Telehealth and autism prior to and in the age of covid-19: A systematic and critical review of the last decade. Clinical Child and Family Psychology Review, 24(3), 599–630. https://doi.org/10.1007/s10567-021-00358-0
Eshraghi, A. A., Li, C., Alessandri, M., Messinger, D. S., Eshraghi, R. S., Mittal, R., & Armstrong, F. D. (2020). COVID-19: Overcoming the challenges faced by individuals with autism and their families. The Lancet Psychiatry. https://doi.org/10.1016/S2215-0366(20)30197-8
Degli Espinosa, F., Metko, A., Raimondi, M., Impenna, M., & Scognamiglio, E. (2020). A model of support for families of children with autism living in the Covid-19 lockdown: lessons from Italy. Behavior Analysis in Practice, 13(3), 550–558. https://doi.org/10.1007/s40617-020-00438-7
Ferguson, J., Craig, E. A., & Dounavi, K. (2019). Telehealth as a model for providing behaviour analytic interventions to individuals with autism spectrum disorder: A systematic review. Journal of Autism and Developmental Disorders, 49(2), 582–616. https://doi.org/10.1007/s10803-018-3724-5
Firth, I., & Dryer, R. (2013). The predictors of distress in parents of children with autism spectrum disorder. Journal of Intellectual and Developmental Disability, 38(2), 163–171. https://doi.org/10.3109/13668250.2013.773964
Galea, S., Ahern, J., Resnick, H., Kilpatrick, D., Bucuvalas, M., Gold, J., & Vlahov, D. (2002). Psychological sequelae of the September 11 terrorist attacks in New York City. New England Journal of Medicine, 346(13), 982–987. https://doi.org/10.1056/NEJMsa013404
Glesne, C. (2016). Becoming qualitative researchers: An introduction. Pearson.
Grypdonck, M. H. F. (2006). Qualitative Health Research in the Era of Evidence-Based Practice. Qualitative Health Research, 16(10), 1371–1385. https://doi.org/10.1177/1049732306294089
Harding, J. (2018). Qualitative data analysis: From start to finish. Sage.
Hayes, S. A., & Watson, S. L. (2013). The impact of parenting stress: A meta-analysis of studies comparing the experience of parenting stress in parents of children with and without autism spectrum disorder. Journal of Autism and Developmental Disorders, 43(3), 629–642. https://doi.org/10.1007/s10803-012-1604-y
Huck, C., & Zhang, J. (2021). Effects of the COVID-19 pandemic on K-12 education: A systematic literature review. New Waves-Educational Research and Development Journal, 24(1), 53–84. https://files.eric.ed.gov/fulltext/EJ1308731.pdf
Hussar, B., Zhang, J., Hein, S., Wang, K., Roberts, A., Cui, J., Smith, M., Bullock Mann, F., Barmer, A., & Dilig, R. (2020). The Condition of Education 2020 (NCES 2020–144). U.S. Department of Education. Washington, DC: National Center for Education Statistics. Retrieved from https://nces.ed.gov/pubsearch/pubsinfo.asp?pubid=2020144
Illinois Department of Insurance. (2020). Autism insurance mandate report. Retrieved from https://insurance.illinois.gov/autism/autism-mandate-report-2020.pdf
Illinois Department of Public Health. (2021, June 11). Phase 5: Illinois Restored. Retrieved from https://www.dph.illinois.gov/covid19/phase-5
Illinois Department of Public Health. (2022, January 31). COVID-19 Statistics. Retrieved from https://www.dph.illinois.gov/covid19/statistics
Illinois State Board of Education. (2021). Illinois State Board of Education 2021 Annual Report (p. 10). Retrieved from https://www.isbe.net/Documents/2021-Annual-Report.pdf
Individuals with Disabilities Education Act, 20 U.S.C. § 1400 et seq. (2004).
Jeste, S., Hyde, C., Distefano, C., Halladay, A., Ray, S., Porath, M., Wilson, R. B., & Thurm, A. (2020). Changes in access to education and healthcare services for individuals with intellectual and developmental disabilities during COVID-19 restrictions. Journal of Intellectual Disability Research, 64(11), 825–833. https://doi.org/10.1111/jir.12776
Kong, M. (2021). What COVID-19 means for non- neurotypical children and their families. Pediatric Research, 89, 396–397. https://doi.org/10.1038/s41390-020-0913-7
Kogan, M. D., Strickland, B. B., Blumberg, S. J., Singh, G. K., Perrin, J. M., & van Dyck, P. C. (2008). A national profile of the health care experiences and family impact of autism spectrum disorder among children in the United States, 2005–2006. Pediatrics, 122(6), e1149–e1158. https://doi.org/10.1542/peds.2008-1057
Kouo, J. L., & Kouo, T. S. (2021). A sco** review of targeted interventions and training to facilitate medical encounters for school-aged patients with an autism spectrum disorder. Journal of Autism and Developmental Disorders, 51(8), 2829–2851. https://doi.org/10.1007/s10803-020-04716-9
Kuhfeld, M., Soland, J., Tarasawa, B., Johnson, A., Ruzek, E., & Liu, J. (2020). Projecting the potential impact of Covid-19 school closures on academic achievement. Educational Researcher, 49(8), 549–565. https://doi.org/10.3102/0013189X20965918
Latzer, I., Leitner, Y., & Karnieli-Miller, O. (2021). Core experiences of parents of children with autism during the COVID-19 pandemic lockdown. Autism, 25(4), 1047–1059. https://doi.org/10.1177/1362361320984317
Lee, V., Albaum, C., Tablon Modica, P., Ahmad, F., Gorter, J. W., Khanlou, N., McMorris, C., Lai, J., Harrison, C., Hedley, T., Johnston, P., Putterman, C., Spoelstra, M., & Weiss, J. A. (2021). The impact of COVID-19 on the mental health and wellbeing of caregivers of autistic children and youth: A sco** review. Autism Research: Official Journal of the International Society for Autism Research, 14(12), 2477–2494. https://doi.org/10.1002/aur.2616
Lindgren, S., Wacker, D., Suess, A., Schieltz, K., Pelzel, K., Kopelman, T., Lee, J., Romani, P., & Waldron, D. (2016). Telehealth and autism: treating challenging behavior at lower cost. Pediatrics, 137(Suppl 2), S167–S175. https://doi.org/10.1542/peds.2015-2851O
Machalicek, W., O’Reilly, M. F., Rispoli, M., Davis, T., Lang, R., Franco, J. H., & Chan, J. M. (2010). Training teachers to assess the challenging behaviors of students with autism using video tele-conferencing. Education and Training in Autism and Developmental Disabilities, 45(2), 203–215. Retrieved from http://www.jstor.org/stable/23879807
Manning, J., Billian, J., Matson, J., Allen, C., & Soares, N. (2020). Perceptions of families of individuals with autism spectrum disorder during the COVID-19 crisis. Journal of Autism and Developmental Disorders, 51(8), 2920–2928. https://doi.org/10.1007/s10803-020-04760-5
Meadan, H., Halle, J. W., & Ebata, A. T. (2010). Families with children who have autism spectrum disorders: stress and support. Exceptional Children, 77(1), 7–36. https://doi.org/10.1177/001440291007700101
Meadan, H., Snodgrass, M. R., Meyer, L. E., Fisher, K. W., Chung, M. Y., & Halle, J. W. (2016). Internet-based parent-implemented intervention for young children with autism: A pilot study. Journal of Early Intervention, 38(1), 3–23. https://doi.org/10.1177/1053815116630327
Mutluer, T., Doenyas, C., & Aslan Genc, H. (2020). Behavioral implications of the Covid-19 process for autism spectrum disorder, and individuals’ comprehension of and reactions to the pandemic conditions. Frontiers in Psychiatry, 11, 561882. https://doi.org/10.3389/fpsyt.2020.561882
National Autism Center. (2015). Findings and conclusions: National standards project, phase 2. Randolph, MA: National Autism Center.
Neece, C. L., Green, S. A., & Baker, B. L. (2012). Parenting stress and child behavior problems: A transactional relationship across time. American Journal on Intellectual and Developmental Disabilities, 117(1), 48–66. https://doi.org/10.1352/1944-7558-117.1.48
Neece, C., McIntyre, L. L., & Fenning, R. (2020). Examining the impact of COVID- 19 in ethnically diverse families with young children with intellectual and developmental disabilities. Journal of Intellectual Disability Research, 64(10), 739–749. https://doi.org/10.1111/jir.12769
Patton, M. Q. (2015). Qualitative research & evaluation methods. Sage.
Pellicano, E., & Stears, M. (2020). The hidden inequities of COVID-19. Autism, 24(6), 1309–1310. https://doi.org/10.1177/1362361320927590
Pennington, R. C., Ault, M. J., Schmuck, D. G., Burt, J. L., & Ferguson, L. L. (2016). Frequency of mand instruction reported in behavioral, special education, and speech journals. Behavior Analysis in Practice, 9(3), 235–242. https://doi.org/10.1007/s40617-015-0095-7
Prime, H., Wade, M., & Browne, D. T. (2020). Risk and resilience in family well-being during the COVID-19 pandemic. American Psychologist, 75(5), 631–643. https://doi.org/10.1037/amp0000660. PMID: 32437181.
Rodriguez, G., Hartley, S. L., & Bolt, D. (2019). Transactional relations between parenting stress and child autism symptoms and behavior problems. Journal of Autism and Developmental Disorders, 49, 1887–1898. https://doi.org/10.1007/s10803-018-3845-x
Rowland, M., Peterson-Besse, J., Dobbertin, K., Walsh, E. S., Horner-Johnson, W., & Expert Panel on Disability and Health Disparities. (2014). Health outcome disparities among subgroups of people with disabilities: A sco** review. Disability and Health Journal, 7(2), 136–150. https://doi.org/10.1016/j.dhjo.2013.09.003
Saldaña, J., & Omasta, M. (2016). Qualitative research: Analyzing life. Sage Publications.
Savin-Baden, M., & Major, C. H. (2013). Qualitative research: The essential guide to theory and practice. Routledge.
Seale, C. (2017). Researching society and culture. Researching Society and Culture, 1–664.
Silverman, A. (2020, March 27). People with intellectual disabilities may be denied lifesaving care under these plans as Coronavirus Spreads. ProPublica. Retrieved October 12, 2023, from https://www.propublica.org/article/people-with-intellectual-disabilities-may-be-denied-lifesaving-care-under-these-plans-as-coronavirus-spreads
Simacek, J., Elmquist, M., Dimian, A. F., & Reichle, J. (2020). Current trends in telehealth applications to deliver social communication interventions for young children with or at risk for autism spectrum disorder. Current Developmental Disorders Reports, 8(1), 15–23. https://doi.org/10.1007/s40474-020-00214-w
Slavin, R. E., & Storey, N. (2020). The US educational response to the COVID-19 pandemic. Best Evidence in Chinese Education, 5(2), 617–633. https://ssrn.com/abstract=3652585
Smith, L. E., Greenberg, J. S., & Seltzer, M. M. (2012). Social support and well-being at mid-life among mothers of adolescents and adults with autism spectrum disorders. Journal of Autism and Developmental Disorders, 42(9), 1818–1826. https://doi.org/10.1007/s10803-011-1420-9
Snodgrass, M. R., Chung, M. Y., Biller, M. F., Appel, K. E., Meadan, H., & Halle, J. W. (2017). Telepractice in speech-language therapy: The use of online technologies for parent training and coaching. Communication Disorders Quarterly, 38(4), 242–254. https://doi.org/10.1177/1525740116680424
Stankovic, M., Jelena, S., Stankovis, M., Shih, A., Stanjanovic, A., & Stankovic, S. (2020). The Serbian experience of challenges of parenting children with autism spectrum disorders during the COVID-19 pandemic and the state of emergency with the police lockdown. The Lancet Child and Adolescent Health, 1–14. https://doi.org/10.2139/ssrn.3582788
State of Illinois. (2020). Executive order in response to COVID-19 No. 8. Retrieved from https://www2.illinois.gov/Pages/Executive-Orders/ExecutiveOrder2020-10.aspx
Stough, L. M., Ducy, E. M., & Kang, D. (2017). Addressing the needs of children with disabilities experiencing disaster or terrorism. Current Psychiatry Reports, 19(4), 24. https://doi.org/10.1007/s11920-017-0776-8
Sturm, A., Williams, J., & Kasari, C. (2021). Who gains and who loses? Sociodemographic disparities in access to special education services among autistic students. Autism Research : Official Journal of the International Society for Autism Research, 14(8), 1621–1632. https://doi.org/10.1002/aur.2517
Sutherland, R., Trembath, D., Hodge, M. A., Rose, V., & Roberts, J. (2019). Telehealth and autism: Are telehealth language assessments reliable and feasible for children with autism? International Journal of Language & Communication Disorders, 54(2), 281–291. https://doi.org/10.1111/1460-6984.12440
Thorogood, N., & Green, J. (2018). Qualitative methods for health research. Sage Publications.
Tong, A., Flemming, K., McInnes, E., Oliver, S., & Craig, J. (2012). Enhancing transparency in reporting the synthesis of qualitative research: ENTREQ. BMC Medical Research Methodology, 12(1), 181. https://doi.org/10.1186/1471-2288-12-181
Toseeb, U. (2021). Sibling conflict during COVID-19 in families with special educational needs and disabilities. British Journal of Educational Psychology, 9–21. https://doi.org/10.1111/bjep.12451
Turk, M. A., Landes, S. D., Formica, M. K., & Goss, K. D. (2020). Intellectual and developmental disability and COVID-19 case-fatality trends: TriNetX analysis. Disability and Health Journal, 13(3), 100942. https://doi.org/10.1016/j.dhjo.2020.100942
Ueda, R., Okada, T., Kita, Y., Ozawa, Y., Inoue, H., Shioda, M., Kono, Y., Kono, C., Nakamura, Y., Amemiya, K., Ito, A., Suguira, N., Matsuoka, Y., Kaiga, C., Kubota, M., & Ozawa, H. (2021). The quality of life of children with neurodevelopmental disorders and their parents during the coronavirus disease 19 emergency in Japan. Scientific Reports, 11(1), 1–8. https://doi.org/10.1038/s41598-021-82743-x
Vetter, S., Rossegger, A., Rossler, W., Bisson, J. I., & Endrass, J. (2008). Exposure to the tsunami disaster, PTSD symptoms, and increased substance use–an Internet-based survey of male and female residents of Switzerland. BMC Public Health, 8(1), 1–6. https://doi.org/10.1186/1471-2458-8-92
Wade, M., Prime, H., & Browne, D. T. (2020). Why we need longitudinal mental health research with children and youth during (and after) the COVID-19 pandemic. Psychiatry Research, 290, 113–143. https://doi.org/10.1016/j.psychres.2020.113143
White, L. C., Law, J. K., Daniels, A. M., Toroney, J., Vernoia, B., **ao, S., The SPARK Consortium, Feliciano, P., & Chung, W. K. (2021). Brief report: Impact of COVID-19 on individuals with ASD and their caregivers: A perspective from SPARK cohort. Journal of Autism and Developmental Disorders, 51, 3566–3773. https://doi.org/10.1007/s10803-020-04816-6
Whitmore, K. E. (2016). Respite care and stress among caregivers of children with autism spectrum disorder: An integrative review. Journal of Pediatric Nursing, 31(6), 630–652. https://doi.org/10.1016/j.pedn.2016.07.009
Wong, C., Odom, S. L., Hume, K. A., Cox, A. W., Fettig, A., Kucharczyk, S., Brock, M. E., Plavnick, J. B., Fleury, V. P., & Schultz, T. R. (2015). Evidence-based practices for children, youth, and young adults with autism spectrum disorder: A comprehensive review. Journal of Autism and Developmental Disorders, 45(7), 1951–1966. https://doi.org/10.1007/s10803-014-2351-z
World Health Organization. (2020). WHO Director-General's opening remarks at the media briefing on COVID-19 - 11 March 2020. Retrieved from https://www.who.int/director-general/speeches/detail/who-director-general-s-opening-remarks-at-the-media-briefing-on-covid-19---11-march-2020
Yarimkaya, E., & Esentürk, O. K. (2020). Promoting physical activity for children with autism spectrum disorders during coronavirus outbreak: Benefits, strategies, and examples. International Journal of Developmental Disabilities. (Ahead-of-print), 1–6. https://doi.org/10.1080/20473869.2020.1756115
Zaidman-Zait, A., Mirenda, P., Duku, E., Szatmari Georgiades, S., Volden, J., Zwaigenbaum, L., Vaillancourt, T., Bryson, S., Smith, I., Fombonne, E., Roberts, W., Waddell, C., Thompson, A., & The Pathways in ASD Study Team. (2014). Examination of bidirectional relationships between parent stress and two types of problem behavior in children with autism spectrum disorder. Journal of Autism and Developmental Disorders, 44(8), 1908–1917. https://doi.org/10.1007/s10803-014-2064-3
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