Caring for Children with Developmental and Intellectual Disabilities

This evidence repository is a collection of best available resources and evidence collated by a knowledge synthesis team at Alberta Research for Health Evidence (ARCHE) and the clinical content team.

The knowledge synthesis team utilizes a pyramid-shaped framework, built upon the “4S” hierarchy of evidence model, to provide detailed evidence appropriate to meet stakeholders’ needs. They search a combination of databases (Cochrane Library, PubMed, TRIP Database) and web-based search engines (Google, Google Scholar) to locate evidence for the knowledge pyramids. Publication types sought in the initial topic searches are organized into five levels that determine the order in which resources are presented:

1. Clinical Practice Guidelines and Pathways
2. Overviews and Summaries of Systematic Reviews
3. Systematic Reviews
4. Key Studies

Where applicable resources for families and parents are also listed.

The knowledge synthesis team collaborates with the clinical content team to select the most relevant guidelines, reviews, and key studies, which can be found below. This evidence repository is not intended to be an exhaustive list of resources for a topic, but rather a curated list of current, evidence-based resources, based on expert consensus of relevance and usability for a general emergency department setting. Every effort is made to identify resources that are open access (i.e. publicly available, free of charge, not requiring a subscription).

More information about the creation of our evidence repositories can be found here.

Thank you to the following clinical content experts and Knowledge Synthesis team who led the development of this evidence repository.

William Craig, MDCM, MSc, FRCPC Professor, Department of Pediatrics, University of Alberta

Ana Hanlon-Dearman, MD, MSc, FRCPC, FAAP Professor, Pediatric and Child Health, University of Manitoba

Shayna McNeil, MD Department of Pediatrics and Child Health, University of Manitoba (v1.0)

Samantha Guitard, MSc Evidence Synthesis Scientist, Alberta Research Centre for Health Evidence, Department of Pediatrics, University of Alberta

Sarah Elliott, PhD Assistant Director, Alberta Research Centre for Health Evidence, Department of Pediatrics, University of Alberta, Deputy Director, JBI University of Alberta Centre for Knowledge Mobilization

TREKK developed resources for healthcare providers and parents & families can be found here.

References in bold correspond to those used in the Bottom Line Recommendation.

1. TREKK. Algorithm: Care of the Agitated Patient. Translating Emergency Knowledge for Kids. 2024.
2. TREKK. Care of the Agitated Patient – Medication Dosing Table. Translating Emergency Knowledge for Kids. 2024.
3. Saidinejad M, Foster AA, Santillanes G, et al. Strategies for optimal management of pediatric acute agitation in emergency settings. J Am Coll Emerg Physicians Open. 2024;5(4):e13255.
4. Center for Autism & Related Disabilities (CARD). Autism and the hospital emergency room: A practical guide for health professionals to meet the needs of individuals with autism spectrum disorders. 2021.
5. American Academy of Pediatrics. Autism spectrum disorder: Updated guidelines from the American Academy of Pediatrics. 2020.
6. Ip A ZL, Brian J. Post-diagnostic management and follow-up care for autism spectrum disorder. 2019.
7. Chun TH, Mace SE, Katz ER. Evaluation and management of children with acute mental health or behavioral problems. Part II: Recognition of clinically challenging mental health related conditions presenting with medical or uncertain symptoms. Pediatrics. 2016;138(3).
8. Royal Children’s Hospital Melbourne. Autism and developmental disability: Management of distress/agitation. 2015.
9. Hilt RJ, Woodward TA. Agitation treatment for pediatric emergency patients. J Am Acad Child Adolesc Psychiatry. 2008;47(2):132-8.
10. Bradley E; Intellectual Disabilities Psychiatric Curriculum Planning Committee. Guidelines for Managing the Client with Intellectual Disability in the Emergency Room. Toronto, ON: Centre for Addiction and Mental Health, University of Toronto. 2002:1-36.

1. Elliott SA, Rahman S, Scott SD, et al. Seeking Care for Children with Intellectual and/or Developmental Disabilities in the Emergency Department: A Mixed Methods Systematic Review of Parents’ Experiences and Information Needs. Open Access Emerg Med. 2024;16:117‑131.
2. Wolpert KH, Kodish I, Kim SJ, et al. Behavioral management of children with autism in the emergency department. Pediatr Emerg Care. 2023;39(1):45-50.
3. Kouo JL, Kouo TS. A scoping review of targeted interventions and training to facilitate medical encounters for school-aged patients with an autism spectrum disorder. J Autism Dev Disord. 2021;51(8):2829-51.
4. Straus J, Coburn S, Maskell S, et al. Medical encounters for youth with autism spectrum disorder: A comprehensive review of environmental considerations and interventions. Clin Med Insights Pediatr. 2019;13:1179556519842816.
5. Lytle S, Hunt A, Moratschek S, et al. Youth with autism spectrum disorder in the emergency department. J Clin Psychiatry. 2018;79(3).
6. McGonigle JJ, Venkat A, Beresford C, et al. Management of agitation in individuals with autism spectrum disorders in the emergency department. Child Adolesc Psychiatr Clin N Am. 2014;23(1):83-95. 
7. Scarpinato N, Bradley J, Kurbjun K, et al. Caring for the child with an autism spectrum disorder in the acute care setting. J Spec Pediatr Nurs. 2010;15(3):244-54.

1. Kannikeswaran N, Roback MG, Burger RK, et al. Comparison of Procedural Sedation Outcomes in Children With and Without Autism Spectrum Disorder. Hosp Pediatr. 2025;15(5):398‑406.
2. Roy MA, Kinlin C, Estes M, MacEachern SJ. Improving patient‑centred care in the emergency department: Implementation of a Sensory Toolkit for children with autism. Paediatr Child Health. 2024;29(4):199‑204.
3. DeGuzman PB, Abooali S, Sadatsafavi H, Bohac G, Sochor M. Back to basics: Practical strategies to reduce sensory overstimulation in the emergency department identified by adults and caregivers of children with autism spectrum disorder. Int Emerg Nurs. 2024;72:101384.
4. Efron D, Cull E, Fowler J, Dunn K, Prakash C. Patterns of presentation to a Children’s Hospital Emergency Department of patients with autism and/or intellectual disability with behaviours of concern. J Intellect Dev Disabil. 2023;48(1):40‑45.
5. Mannenbach MS, Passe RL, Lovik KK, et al. Caring for children with autism in an emergency department setting. Pediatr Emerg Care. 2021;37(12):e977-e80.
6. Liddle M, Sonnentag TL. Effectiveness of adaptive care plans for children with developmental disabilities during outpatient clinic appointments. J Autism Dev Disord. 2021;51(9):3028-38.
7. Kouo T, Bharadwaj N, Kouo J, et al. Assessing ease of delivering emergency care for patients with autism spectrum disorders. J Dev Behav Pediatr. 2021;42(9):704-10.
8. Jones V, Ryan L, Rooker G, et al. An exploration of emergency department visits for home unintentional injuries among children with autism spectrum disorder for evidence to modify injury prevention guidelines. Pediatr Emerg Care. 2021;37(10):e589-e93.
9. Gray JM, Roback MG. Case studies of challenges in emergency care for children with autism spectrum disorder. Pediatr Emerg Care. 2021;37(12):e1756-e8.
10. Bourke EM, Say DF, Carison A, et al. Emergency mental health presentations in children with autism spectrum disorder and attention deficit hyperactivity disorder. J Paediatr Child Health. 2021;57(10):1572-9.
11. Davignon MN, Friedlaender E, Cronholm PF, et al. Parent and provider perspectives on procedural care for children with autism spectrum disorders. J Dev Behav Pediatr. 2014;35(3):207-15.
12. Lindgren S, Lauer E, Momany E, et al. Disability, hospital care, and cost: utilization of emergency and inpatient care by a cohort of children with intellectual and developmental disabilities. J Pediatr. 2020;S0022-3476(20)31120-3.
13. Lokhandwala T, Khanna R, West-Strum D. Hospitalization burden among individuals with autism. J Autism Dev Disord. 2012 Jan;42(1):95-104.
14. Kalb LG, Stuart EA, Freedman B, et al. Psychiatric-related emergency department visits among children with an autism spectrum disorder. Pediatr Emerg Care. 2012;28(12):1269-76.
15. McDermott S, Zhou L, Mann J. Injury treatment among children with autism or pervasive developmental disorder. J Autism Dev Disord. 2008;38(4):626-33.

1. ECHO KT. Intellectual Developmental Disorders (IDD). 2026.
2. Inclusion Saskatchewan. Health passport: A plain Language Health Care Tool for People in Saskatchewan. 2020.
3. Developmental Disabilities Primary Care Program. My Hospital Form for Patients with Intellectual and Developmental Disabilities. Surrey Place. 2024.
4. Developmental Disabilities Primary Care Program. Trauma-Informed Health Care. Surrey Place. 2024.