Abstract
Parents of children with ASD who had attended an Australian emergency department (ED; n = 421) completed a questionnaire relating to their experiences in the ED, including (1) child’s reason for presentation and existing comorbidities, (2) quality of care during the visit (3) child's behaviour during visit, e.g. sensory responses to the ED environment, and disruptive behaviours. Children with comorbid ASD and intellectual disability were more likely to present with gastrointestinal issues and seizures, while those with comorbid ASD and oppositional defiant disorder were more likely to present with self-injury. ED staff awareness of ASD-related issues, including communication and expression of pain, were common difficulties for parents. The ED environment (e.g. lights, sounds, waiting areas), exacerbated child anxiety and led to disruptive behaviour.
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Abbreviations
- ASD:
-
Autism spectrum disorder
- ADHD:
-
Attention deficit hyperactivity disorder
- ED:
-
Emergency department
- EDs:
-
Emergency departments
- ODD:
-
Oppositional defiant disorder
- SPSS:
-
Statistical Packages for the Social Sciences
References
American Psychiatric Association. (2013). Diagnostic and statistical manual of mental disorders (5th ed.). Arlington, VA: Author.
Andersson, A. K., Omberg, M., & Svedlund, M. (2006). Triage in the emergency department–a qualitative study of the factors which nurses consider when making decisions. Nursing in Critical Care, 11(3), 136–145. https://doi.org/10.1111/j.1362-1017.2006.00162.x
Benjamini, Y., Drai, D., Elmer, G., Kafkafi, N., & Golani, I. (2001). Controlling the false discovery rate in behavior genetics research. Behavioural Brain Research, 125(1–2), 279–284. https://doi.org/10.1016/S0166-4328(01)00297-2
Biyani, S., Morgan, P. S., Hotchkiss, K., Cecchini, M., & Derkay, C. S. (2015). Autism spectrum disorder 101: a primer for pediatric otolaryngologists. International Journal of Pediatric Otorhinolaryngology, 79(6), 798–802. https://doi.org/10.1016/j.ijporl.2015.04.006
Broder-Fingert, S., Shui, A., Ferrone, C., Iannuzzi, D., Cheng, E. R., Giauque, A., & Kuhlthau, K. (2016). A pilot study of autism-specific care plans during hospital admission. Pediatrics, 137(Supplement 2), S196–S204. https://doi.org/10.1542/peds.2015-2851R
Carbone, P., Behl, D., Azor, V., & Murphy, N. (2010). The medical home for children with autism spectrum disorders: Parent and pediatrician perspectives. Journal of Autism and Developmental Disorders, 40(3), 317–324. https://doi.org/10.1007/s10803-009-0874-5
Creswell, J. W., Klassen, A. C., Plano Clark, V. L., & Smith, K. C. (2011). Best practices for mixed methods research in the health sciences. Bethesda (Maryland) National Institutes of Health, 2013, 541–545.
Courtemanche, A. B., & Black, W. R. (2016). Everyday expressions of pain in children with and without autism spectrum disorder. Research in Autism Spectrum Disorders, 26, 65–70.
Davignon, M. N., Friedlaender, E., Cronholm, P. F., Paciotti, B., & Levy, S. E. (2014). Parent and provider perspectives on procedural care for children with autism spectrum disorders. Journal of Developmental & Behavioral Pediatrics, 35(3), 207–215.
Deavenport-Saman, A., Lu, Y., Smith, K., & Yin, L. (2016). Do children with autism overutilize the emergency department? examining visit urgency and subsequent hospital admissions. Maternal and Child Health Journal, 20(2), 306–314. https://doi.org/10.1007/s10995-015-1830-y
Ely, E., Chen-Lim, M. L., Carpenter, K. M., Wallhauser, E., & Friedlaender, E. (2016). Pain assessment of children with autism spectrum disorders. Journal of Developmental & Behavioral Pediatrics, 37(1), 53–61.
Giarelli, E., Nocera, R., Turchi, R., Hardie, T. L., Pagano, R., & Yuan, C. (2014). Sensory stimuli as obstacles to emergency care for children with autism spectrum disorder. Advanced Emergency Nursing Journal, 36(2), 145–163. https://doi.org/10.1097/TME.0000000000000013
Gurney, J. G., McPheeters, M. L., & Davis, M. M. (2006). Parental report of health conditions and health care use among children with and without autism: National Survey of Children’s Health. Archives of Pediatrics & Adolescent Medicine, 160(8), 825–830. https://doi.org/10.1001/archpedi.160.8.825
Kirsch, S. F., Meryash, D. L., & González-Arévalo, B. (2018). Determinants of parent satisfaction with emergency or urgent care when the patient has autism. Journal of Developmental and Behavioral Pediatrics, 39(5), 365–375.
Kopecky, K., Broder-Fingert, S., Iannuzzi, D., & Connors, S. (2013). The needs of hospitalized patients with autism spectrum disorders a parent survey. Clinical Pediatrics, 52(7), 652–660. https://doi.org/10.1177/0009922813485974
Liu, G., Pearl, A. M., Kong, L., Leslie, D. L., & Murray, M. J. (2017). A Profile on Emergency Department Utilization in Adolescents and Young Adults with Autism Spectrum Disorders. Journal of Autism and Developmental Disorders, 47(2), 347–358. https://doi.org/10.1007/s10803-016-2953-8
Lucarelli, J., Welchons, L., Sideridis, G., Sullivan, N. R., Chan, E., & Weissman, L. (2018). Development and evaluation of an educational initiative to improve hospital personnel preparedness to care for children with autism spectrum disorder. Journal of Developmental and Behavioral Pediatrics. https://doi.org/10.1097/DBP.0000000000000580
Lunsky, Y., Tint, A., Weiss, J. A., Palucka, A., & Bradley, E. (2018). A review of emergency department visits made by youth and adults with autism spectrum disorder from the parent perspective. Advances in Autism.
Mannion, A., Leader, G., & Healy, O. (2013). An investigation of comorbid psychological disorders, sleep problems, gastrointestinal symptoms and epilepsy in children and adolescents with Autism Spectrum Disorder. Research in Autism Spectrum Disorders. https://doi.org/10.1016/j.rasd.2012.05.002
McGonigle, J. J., Migyanka, J. M., Glor-Scheib, S. J., Cramer, R., Fratangeli, J. J., Hegde, G. G., Shang, J., & Venkat, A. (2014). Development and evaluation of educational materials for pre-hospital and emergency department personnel on the care of patients with autism spectrum disorder. Journal of Autism and Developmental Disorders. https://doi.org/10.1007/s10803-013-1962-0
McGonigle, J. J., Venkat, A., Beresford, C., Campbell, T. P., & Gabriels, R. L. (2014). January). management of agitation in individuals with autism spectrum disorders in the emergency Department. Child and Adolescent Psychiatric Clinics of North America, 23, 83–95. https://doi.org/10.1016/j.chc.2013.08.003
Memari, A., Ziaee, V., Mirfazeli, F., & Kordi, R. (2012). Investigation of autism comorbidities and associations in a school-based community sample. Journal of Child and Adolescent Psychiatric Nursing, 25(2), 84–90. https://doi.org/10.1111/j.1744-6171.2012.00325.x
Microsoft Corporation. (2018). Microsoft Excel. Retrieved from https://office.microsoft.com/excel
Muskat, B., Greenblatt, A., Nicholas, D. B., Ratnapalan, S., Cohen-Silver, J., Newton, A. S., Craig, W. R., Kilmer, C., & Zwaigenbaum, L. (2016). Parent and health care provider perspectives related to disclosure of autism spectrum disorder in pediatric emergency departments. Autism, 20(8), 986–994. https://doi.org/10.1177/1362361315621520
Nicholas, D. B., Zwaigenbaum, L., Muskat, B., Craig, W. R., Newton, A. S., Cohen-Silver, J., & Kilmer, C. (2016a). Toward Practice Advancement in Emergency Care for Children With Autism Spectrum Disorder. Pediatrics, 137(Supplement), S205–S211. https://doi.org/10.1542/peds.2015-2851S
Nicholas, D. B., Zwaigenbaum, L., Muskat, B., Craig, W. R., Newton, A. S., Kilmer, C., Greenblatt, A., Roberts, W., & Cohen-Silver, J. (2016b). Experiences of emergency department care from the perspective of families in which a child has autism spectrum disorder. Social Work in Health Care, 55(6), 409–426. https://doi.org/10.1080/00981389.2016.1178679
Owley, T. B. (2004). Treatment of individuals with autism spectrum disorders in the emergency department: Special considerations. Clinical Pediatric Emergency Medicine. https://doi.org/10.1016/j.cpem.2004.05.003
Pratt, K., Baird, G., & Gringras, P. (2012). Ensuring successful admission to hospital for young people with learning difficulties, autism and challenging behaviour: A continuous quality improvement and change management programme. Child Care, Health and Development. https://doi.org/10.1111/j.1365-2214.2011.01335.x
Quirantes, D. (2009). Collaborative approach to autism: A parent’s perspective. Journal for Specialists in Pediatric Nursing, 14(3), 203.
Rattaz, C., Dubois, A., Michelon, C., Viellard, M., Poinso, F., & Baghdadli, A. (2013). How do children with autism spectrum disorders express pain? A comparison with developmentally delayed and typically developing children. PAIN, 154(10), 2007–2013.
Richards, B. (2017). Caring for children with autism spectrum condition in paediatric emergency departments. Emergency Nurse, 25(4), 30–34. https://doi.org/10.7748/en.2017.e1713
Richards, C., Oliver, C., Nelson, L., & Moss, J. (2012). Self-injurious behaviour in individuals with autism spectrum disorder and intellectual disability. Journal of Intellectual Disability Research, 56(5), 476–489. https://doi.org/10.1111/j.1365-2788.2012.01537.x
Russell, S., & McCloskey, C. R. (2016). Parent Perceptions of Care Received by Children With an Autism Spectrum Disorder. Journal of Pediatric Nursing, 31(1), 21–31. https://doi.org/10.1016/j.pedn.2015.11.002
Thorne, S. (2016). Interpretive description: Qualitative research for applied practice. Routledge.
Van Cleave, J., Holifield, C., Neumeyer, A. M., Perrin, J. M., Powers, E., Van, L., & Kuhlthau, K. A. (2018). Expanding the capacity of primary care to treat co-morbidities in children with autism spectrum disorder. Journal of Autism and Developmental Disorders, 48(12), 4222–4230. https://doi.org/10.1007/s10803-018-3630-x
Vaz, I. (2010). Improving the management of children with learning disability and autism spectrum disorder when they attend hospital. Child Care, Health and Development. https://doi.org/10.1111/j.1365-2214.2010.01144.x
Wilson, S. A., & Peterson, C. C. (2018). Medical care experiences of children with autism and their parents A scoping review. Child: Care, Health and Development. https://doi.org/10.1111/cch.12611
Wood, E. B., Halverson, A., Harrison, G., & Rosenkranz, A. (2019). Creating a sensory-friendly pediatric emergency department. Journal of Emergency Nursing. https://doi.org/10.1016/j.jen.2018.12.002
Zanotti, J. M. (2018). Handle with care: Caring for children with autism spectrum disorder in the ED. The Peer-Reviewed Journal of Clinical Excellence, 48(2), 50–55.
Funding
Dr Beth Johnson is funded by an NHMRC Early Career Research Fellowship (APP1112348). Dr Beth Johnson and Prof Mark Bellgrove are funded by Australian Department of Health (EPCD000002). Ms Alice Garrick, Ms Carrington Scarfe, and Ms Marie Lee are funded by Monash University CURIE Undergraduate Research Fellowships. Dr Kirsten Furley is funded by an Avant Doctor in Training Research Scholarship.
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This project was approved by the Monash University Human Research Ethics Committee (MUHREC). All procedures performed were in accordance with the ethical standards of the institutional and/or national research committee and with the 1964 Helsinki declaration and its later amendments or comparable ethical standards. The data were subject to Monash University’s privacy and ethical policies.
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Garrick, A., Lee, M.L., Scarffe, C. et al. An Australian Cross-Sectional Survey of Parents’ Experiences of Emergency Department Visits Among Children with Autism Spectrum Disorder. J Autism Dev Disord 52, 2046–2060 (2022). https://doi.org/10.1007/s10803-021-05091-9
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DOI: https://doi.org/10.1007/s10803-021-05091-9