Parent and health care provider perspectives related to disclosure of autism spectrum disorder in pediatric emergency departments
Abstract
Children and youth with autism spectrum disorder presenting in emergency departments face potential cognitive, sensory, and behavioral challenges, and it is crucial for providers to be aware of their unique needs. However, disclosure of a child's autism spectrum disorder can be complex for parental caregivers and is not well understood. This qualitative study utilized a grounded theory approach and analyzed data from 28 parents and 16 health care providers related to autism spectrum disorder disclosure within two Canadian pediatric emergency departments. Study results indicated that participants identified benefits and risks of disclosure. Encouraging understanding, expediting service, and preparing health care providers for working with children with autism spectrum disorder were identified as benefits of disclosure. Risks related to disclosure included potential negative attributions toward the children and parental discomfort in disclosing a diagnosis in front of the children. Parents discussed the health care encounters they experienced following disclosure and provided recommendations for improving the disclosure process in the emergency department. It is recommended that future research explore the experiences of parents who choose not to disclose their child's autism spectrum disorder. Greater awareness of the disclosure experience and the development of resources and tools to support communication between parents and health care providers are also recommended.
Integrity signals
Registry
Cites
Statistics
Claims the paper makes
Claims other papers make about this one
Each is checked against this paper’s own text: does it say what the citing paper says it does?
Benefits of disclosure included that it led to accommodations being made.
“Benefits included that it led to accommodations being made; however, some parents questioned whether the information was read by practitioners.”
From A meta‐synthesis of how parents of children with autism describe their experience of accessing and using routine healthcare services for their children (2021) · cites this paper as Muskat et al., 2016
Parents mentioned their unease in discussing their child's diagnosis with the HCP in front of them.
“Parents mentioned their unease in discussing their child's diagnosis with the HCP in front of them.”
From A meta‐synthesis of how parents of children with autism describe their experience of accessing and using routine healthcare services for their children (2021) · cites this paper as Muskat et al., 2016
A suggestion was made to flag a child's file by placing an 'alert' notice on it in order to facilitate transfer of information.
“A suggestion was made to flag a child's file by placing an 'alert' notice on it (Muskat et al., 2016) in order to facilitate transfer of information.”
From A meta‐synthesis of how parents of children with autism describe their experience of accessing and using routine healthcare services for their children (2021) · cites this paper as Muskat et al., 2016
Some parents questioned whether the information was read by practitioners.
“however, some parents questioned whether the information was read by practitioners.”
From A meta‐synthesis of how parents of children with autism describe their experience of accessing and using routine healthcare services for their children (2021) · cites this paper as Muskat et al., 2016
Muskat et al. (2016) discussed the decision of parents to disclose, with both consideration regarding the benefits (e.g., to increase HCP understanding) and risks (e.g., fear of eliciting negative attributions to autism).
“Muskat et al., (2016) discussed the decision of parents to disclose, with both consideration regarding the benefits (e.g., to increase HCP understanding) and risks (e.g., fear of eliciting negative attributions to autism).”
From A meta‐synthesis of how parents of children with autism describe their experience of accessing and using routine healthcare services for their children (2021) · cites this paper as Muskat et al., 2016
Cites
Lincoln, Y. S., Guba, E. G., & Pilotta, J. J. (1985) · International Journal of Intercultural Relations · doi:10.1016/0147-1767(85)90062-8 · Cited by 45,787 · see citing works
Basics of Qualitative Research: Grounded Theory Procedures and Techniques.
Ellis, C., Strauss, A., & Corbin, J. M. (1992) · Contemporary Sociology A Journal of Reviews · doi:10.2307/2074814 · Cited by 29,279 · see citing works
Basics of Qualitative Research: Grounded Theory Procedures and Techniques
Long, D. R., Strauss, A., & Corbin, J. M. (1993) · Modern Language Journal · doi:10.2307/328955 · Cited by 17,612 · see citing works
Stigma: Notes on the Management of Spoiled Identity
(1969) · Postgraduate Medical Journal · doi:10.1136/pgmj.45.527.642 · Cited by 14,251 · see citing works
Basics of Qualitative Research (3rd ed.): Techniques and Procedures for Developing Grounded Theory
Corbin, J., & Strauss, A. (2008) · SAGE · doi:10.4135/9781452230153 · Cited by 12,136 · see citing works
Stigma: Notes on the Management of Spoiled Identity.
Seeman, M. S., & Goffman, E. (1964) · American Sociological Review · doi:10.2307/2091442 · Cited by 10,716 · see citing works
Handbook of qualitative research
(2000) · Choice Reviews Online · doi:10.5860/choice.38-0057 · Cited by 7,081 · see citing works
Criteria for assessing the trustworthiness of naturalistic inquiries
Guba, E. G. (1981) · ECTJ · doi:10.1007/bf02766777 · Cited by 5,527 · see citing works
Rigor in Qualitative Research: The Assessment of Trustworthiness
Krefting, L. (1991) · American Journal of Occupational Therapy · doi:10.5014/ajot.45.3.214 · Cited by 4,174 · see citing works
The problem of rigor in qualitative research
Sandelowski, M. (1986) · Advances in Nursing Science · doi:10.1097/00012272-198604000-00005 · Cited by 2,772 · cited 2× · see citing works
“To address rigor and trustworthiness (Corbin and Strauss, 2008; Guba, 1981; Krefting, 1991; Lincoln and Guba, 1985; Sandelowski, 1986), the following strategies were used: (a) peer debriefing through regular team meetings discussing and clarifying emerging coding categories, (b) “memoing” thoughts and reactions during…”
MethodUnderstanding and Evaluating Qualitative Research
Fossey, E., Harvey, C., Mcdermott, F., & Davidson, L. (2002) · Australian & New Zealand Journal of Psychiatry · doi:10.1046/j.1440-1614.2002.01100.x · Cited by 2,311 · see citing works
The Discipline and Practice of Qualitative Research
Denzin, N. K., & Lincoln, Y. S. (2005) · Cited by 2,267 · see citing works
On the Self-Stigma of Mental Illness: Stages, Disclosure, and Strategies for Change
Corrigan, P. W., & Rao, D. (2012) · The Canadian Journal of Psychiatry · doi:10.1177/070674371205700804 · Cited by 1,208 · see citing works
Qualitative Research Methods: A Health Focus
Rice, P. L., & Ezzy, D. (1999) · Cited by 1,133 · see citing works
Qualitative Research Methods: A Health Focus
Newell, C. (2000) · eCite Digital Repository (University of Tasmania) · Cited by 948 · see citing works
Living in a World of Our Own: The Experience of Parents Who Have a Child With Autism
Woodgate, R. L., Ateah, C. A., & Secco, L. M. (2008) · Qualitative Health Research · doi:10.1177/1049732308320112 · Cited by 451 · see citing works
Enhancing the Rigor of Grounded Theory: Incorporating Reflexivity and Relationality
Hall, W. A., & Callery, P. (2001) · Qualitative Health Research · doi:10.1177/104973201129119082 · Cited by 430 · cited 2× · see citing works
“To address rigor and trustworthiness (Corbin and Strauss, 2008; Guba, 1981; Krefting, 1991; Lincoln and Guba, 1985; Sandelowski, 1986), the following strategies were used: (a) peer debriefing through regular team meetings discussing and clarifying emerging coding categories, (b) “memoing” thoughts and reactions during…”
BackgroundMethodGreen, S., Davis, C. S., Karshmer, E., Marsh, P., & Straight, B. (2005) · Sociological Inquiry · doi:10.1111/j.1475-682x.2005.00119.x · Cited by 371 · see citing works
ERIC/ECTJ Annual Review Paper Criteria for Assessing the Trustworthiness of Naturalistic Inquiries
Guba, E. G. (1981) · Cited by 340 · see citing works
In the Closet with Illness: Epilepsy, Stigma Potential and Information Control
Schneider, J. W., & Conrad, P. (1980) · Social Problems · doi:10.2307/800379 · Cited by 296 · see citing works
Farrugia, D. (2009) · Sociology of Health & Illness · doi:10.1111/j.1467-9566.2009.01174.x · Cited by 273 · see citing works
Cross-Disability Experiences of Barriers to Health-Care Access
Drainoni, M., Lee-Hood, E., Tobias, C. R., Bachman, S. S., Andrew, J., & Maisels, L. (2006) · Journal of Disability Policy Studies · doi:10.1177/10442073060170020101 · Cited by 224 · see citing works
‘Coming out’ on the spectrum: autism, identity and disclosure
Davidson, J., & Henderson, V. L. (2010) · Social & Cultural Geography · doi:10.1080/14649360903525240 · Cited by 203 · see citing works
Herman (1993) · doi:10.1177/089124193022003002 · Cited by 198 · see citing works
Muskat, B., Burnham Riosa, P., Nicholas, D. B., Roberts, W., Stoddart, K. P., & Zwaigenbaum, L. (2015) · Autism · doi:10.1177/1362361314531341 · Cited by 184 · see citing works
Self-citationBirenbaum, A. (1970) · Journal of Health and Social Behavior · doi:10.2307/2948301 · Cited by 151 · see citing works
Coping With Autism: A Journey Toward Adaptation
Lutz, H. R., Patterson, B. J., & Klein, J. (2011) · Journal of Pediatric Nursing · doi:10.1016/j.pedn.2011.03.013 · Cited by 102 · see citing works
McGonigle, J. J., Migyanka, J. M., Glor-Scheib, S. J., Cramer, R., Fratangeli, J. J., Hegde, G. G., Shang, J. S., & Venkat, A. (2013) · Journal of Autism and Developmental Disorders · doi:10.1007/s10803-013-1962-0 · Cited by 80 · see citing works
Disclose or Conceal? Strategies of Information Management in Persons with Epilepsy
Tröster, H. (1997) · Epilepsia · doi:10.1111/j.1528-1157.1997.tb01221.x · Cited by 77 · see citing works
Impression Management by Parents with Disabled Children
Voysey, M. (1972) · Journal of Health and Social Behavior · doi:10.2307/2136975 · Cited by 73 · see citing works
Sensory Stimuli as Obstacles to Emergency Care for Children With Autism Spectrum Disorder
Giarelli, E., Nocera, R., Turchi, R. M., Hardie, T., Baskin, R., & Yuan, C. (2014) · Advanced Emergency Nursing Journal · doi:10.1097/tme.0000000000000013 · Cited by 68 · see citing works
Parent and Provider Perspectives on Procedural Care for Children with Autism Spectrum Disorders
Davignon, M. N., Friedlaender, E., Cronholm, P. F., Paciotti, B., & Levy, S. E. (2014) · Journal of Developmental & Behavioral Pediatrics · doi:10.1097/dbp.0000000000000036 · Cited by 66 · see citing works
Pratt, K., Baird, G., & Gringras, P. (2011) · Child Care Health and Development · doi:10.1111/j.1365-2214.2011.01335.x · Cited by 61 · see citing works
Lum, M., Garnett, M., & O’Connor, E. (2014) · Research in Autism Spectrum Disorders · doi:10.1016/j.rasd.2014.09.009 · Cited by 59 · see citing works
Disclosure on the Spectrum: Understanding Disclosure Among Employees on the Autism Spectrum
Johnson, T. D., & Joshi, A. (2014) · Industrial and Organizational Psychology · doi:10.1111/iops.12149 · Cited by 54 · see citing works
Lunsky, Y., Gracey, C. D., & Gelfand, S. (2008) · Intellectual and developmental disabilities · doi:10.1352/2008.46:446-455 · Cited by 50 · see citing works
Vaz, I. D. S. (2010) · Child Care Health and Development · doi:10.1111/j.1365-2214.2010.01144.x · Cited by 47 · see citing works
Care of the patient with an autism spectrum disorder by the general physician
Venkat, A., Jauch, E. C., Russell, W. S., Crist, C. R., & Farrell, R. (2012) · Postgraduate Medical Journal · doi:10.1136/postgradmedj-2011-130727 · Cited by 43 · see citing works
Hoogsteen, L., & Woodgate, R. L. (2013) · PubMed · Cited by 38 · see citing works
Wu, C.-M., Kung, P., Li, C., & Tsai, W. (2014) · Research in Developmental Disabilities · doi:10.1016/j.ridd.2014.09.019 · Cited by 35 · see citing works
Pediatric Mental Health Emergencies and Special Health Care Needs
Chun, T. H., Katz, E. R., & Duffy, S. J. (2013) · Pediatric Clinics of North America · doi:10.1016/j.pcl.2013.06.006 · Cited by 28 · see citing works
Autism in the Emergency Department
Cohen-Silver, J., Muskat, B., & Ratnapalan, S. (2014) · Clinical Pediatrics · doi:10.1177/0009922814540983 · Cited by 27 · see citing works
Self-citationStatus Report – National Epidemiologic Database for the Study of Autism in Canada (NEDSAC)
Ouellette-Kuntz, H. M. J., Coo, H., Yu, C. T., Lewis, M. E. S., Dewey, D., Hennessey, P. E., Jackman, P. D., Breitenbach, M. M., & Holden, J. J. A. (2012) · Chronic diseases and injuries in Canada · doi:10.24095/hpcdp.32.2.04 · Cited by 20 · see citing works
Owley, T. B. (2004) · Clinical Pediatric Emergency Medicine · doi:10.1016/j.cpem.2004.05.003 · Cited by 15 · see citing works
“Like being in a cage”: stigma as experienced by adolescents whose mothers are living with HIV
Mason, S. J., Sultzman, V. O., & Berger, B. E. (2014) · Vulnerable Children and Youth Studies · doi:10.1080/17450128.2014.933941 · Cited by 14 · see citing works
Management of Pediatric Patients With Autistic Spectrum Disorders in the Emergency Department
MacKenzie, J. G., Abraham, G., & Goebel, S. M. (2013) · Clinical Pediatric Emergency Medicine · doi:10.1016/j.cpem.2013.01.010 · Cited by 13 · see citing works
Collaborative Approach to Autism: A Parent's Perspective
Quirantes, D. (2009) · Journal for Specialists in Pediatric Nursing · doi:10.1111/j.1744-6155.2009.00199.x · Cited by 11 · see citing works
Flagged first, then by citations
Cited by
Sorted by citations
Weiss, J. A., Isaacs, B., Diepstra, H., Wilton, A. S., Brown, H. K., McGarry, C., & Lunsky, Y. (2018) · Journal of Autism and Developmental Disorders · doi:10.1007/s10803-017-3292-0 · Cited by 159 · see citing works
Thompson‐Hodgetts, S., Labonté, C., Mazumder, R., & Phelan, S. (2020) · Research in Autism · doi:10.1016/j.rasd.2020.101598 · Cited by 122 · see citing works
Patient- and Family-Centered Care in the Emergency Department for Children With Autism
Nicholas, D. B., Muskat, B., Zwaigenbaum, L., Greenblatt, A., Ratnapalan, S., Kilmer, C., Craig, W. R., Roberts, W., Cohen-Silver, J., Newton, A. S., et al. (2020) · PEDIATRICS · doi:10.1542/peds.2019-1895l · Cited by 69 · see citing works
Self-citationNicholas, D. B., Zwaigenbaum, L., Muskat, B., Craig, W. R., Newton, A. S., Kilmer, C., Greenblatt, A., Roberts, W., & Cohen-Silver, J. (2016) · Social Work in Health Care · doi:10.1080/00981389.2016.1178679 · Cited by 74 · see citing works
Self-citationThe sensory experiences of autistic people: A metasynthesis
Sibéoni, J., Massoutier, L., Valette, M., Manolios, É., Verneuil, L., Speranza, M., & Révah‐Levy, A. (2022) · Autism · doi:10.1177/13623613221081188 · Cited by 51 · see citing works
Mahoney, W. J., Villacrusis, M., Sompolski, M., Iwanski, B., Charman, A., Hammond, C. A., & Abraham, G. (2021) · Journal for Specialists in Pediatric Nursing · doi:10.1111/jspn.12332 · Cited by 41 · see citing works
Boshoff, K., Bowen‐Salter, H., Gibbs, D., Phillips, R. L., Porter, L., & Wiles, L. (2021) · Health & Social Care in the Community · doi:10.1111/hsc.13369 · Cited by 35 · see citing works
Garrick, A., Lee, M. L., Scarffe, C., Attwood, T., Furley, K., Bellgrove, M. A., & Johnson, B. P. (2021) · Journal of Autism and Developmental Disorders · doi:10.1007/s10803-021-05091-9 · Cited by 31 · see citing works
Autistic patients' experiences of the hospital setting: A scoping review
Greenwood, E., Cooklin, A., Barbaro, J., & Miller, C. (2023) · Journal of Advanced Nursing · doi:10.1111/jan.15880 · Cited by 30 · see citing works
Autism disclosure – The decisions autistic adults make
Farsinejad, A., Russell, A., & Butler, C. (2022) · Research in Autism Spectrum Disorders · doi:10.1016/j.rasd.2022.101936 · Cited by 27 · see citing works
Adib, N. A. N., Ibrahim, M. I., Rahman, A. A., Bakar, R. S., Yahaya, N. A., Hussin, S., & Arifin, W. N. (2019) · International Journal of Environmental Research and Public Health · doi:10.3390/ijerph16101684 · Cited by 27 · see citing works
Adib, N. A. N., Ibrahim, M. I., Rahman, A. A., Bakar, R. S., Yahaya, N. A., Hussin, S., & Arifin, W. N. (2018) · International Journal of Environmental Research and Public Health · doi:10.3390/ijerph15112455 · Cited by 22 · see citing works
Determinants of Parent Satisfaction with Emergency or Urgent Care When the Patient Has Autism
Kirsch, S. F., Meryash, D. L., & González-Arévalo, B. (2018) · Journal of Developmental & Behavioral Pediatrics · doi:10.1097/dbp.0000000000000573 · Cited by 21 · see citing works
Axelson, A., Kelleher, K. J., Chisolm, D. J., & Boch, S. J. (2020) · Children and Youth Services Review · doi:10.1016/j.childyouth.2020.104802 · Cited by 16 · see citing works
Health social work in Canada: Five trends worth noting
Bryson, S. A., & Bosma, H. (2018) · Social Work in Health Care · doi:10.1080/00981389.2018.1474161 · Cited by 16 · see citing works
Addressing Needs of Hospitalized Patients With Autism
Quiban, C. (2019) · Critical Care Nursing Quarterly · doi:10.1097/cnq.0000000000000292 · Cited by 8 · see citing works
José, C., George-Zwicker, P., Bouma, A., Tardif, L., Pugsley, D., Bélanger, M. F., Robichaud, M., & Gaudet, J. (2021) · Autism in Adulthood · doi:10.1089/aut.2020.0027 · Cited by 9 · see citing works
Autism Comes to the Pediatric Hospital: Perspectives of Child Life Specialists
Riosa, P. B., Randhawa, A.-P., & Muskat, B. (2022) · Journal of Autism and Developmental Disorders · doi:10.1007/s10803-022-05776-9 · Cited by 6 · see citing works
Self-citationDouglas, S. N., Jensen, E. J., & West, P. A. (2022) · Review Journal of Autism and Developmental Disorders · doi:10.1007/s40489-022-00306-w · Cited by 5 · see citing works
Vallani, T., Naqqash, Z., Lin, B., Lu, C., Austin, J., & Stewart, S. E. (2023) · Psychiatry Research · doi:10.1016/j.psychres.2023.115275 · Cited by 5 · see citing works
Elliott, S. A., Rahman, S., Scott, S. D., Craig, W., Knisley, L., Shearer, K., & Hartling, L. (2024) · Open Access Emergency Medicine · doi:10.2147/oaem.s450191 · Cited by 5 · see citing works
Self-citationKlinepeter, E., Choate, J. D., Hall, T. N., & Gibbs, K. D. (2024) · Journal of Autism and Developmental Disorders · doi:10.1007/s10803-024-06573-2 · Cited by 5 · see citing works
Cervantes, P. E., Richards-Rachlin, S., Seag, D. E. M., Conlon, G. R., Donnelly, L., Lee, M. S., Shalev, R. A., Tay, E. T., Knapp, K., Wiener, E., et al. (2025) · Journal of Developmental and Physical Disabilities · doi:10.1007/s10882-025-10006-y · Cited by 3 · see citing works
Kayıtmazbatır, E. T., Güler, H. A., Duyan, Ş. A., Oflaz, A. B., & Bozkurt, B. (2025) · Medicina · doi:10.3390/medicina61101779 · Cited by 2 · see citing works
Kolukısa, T., & Cinar, N. D. (2025) · Archives of Psychiatric Nursing · doi:10.1016/j.apnu.2025.151912 · Cited by 2 · see citing works
Cervantes, P. E., Seag, D. E. M., Baroni, A., & Horwitz, S. M. (2025) · Journal of Developmental and Physical Disabilities · doi:10.1007/s10882-025-10025-9 · Cited by 1 · see citing works
Betancort-Avero, S., Ferrera-Fernández, M.-Á., la Torre, H. G., Auyanet-Franchy, J., & Rodríguez-Suárez, C.-A. (2025) · Children · doi:10.3390/children12091275 · Cited by 2 · see citing works
Lundholm, M., & Stålberg, A. (2025) · Journal of Pediatric Nursing · doi:10.1016/j.pedn.2025.06.022 · Cited by 1 · see citing works
Erdmann, G., Brooks, H. M., Hartling, L., & Scott, S. D. (2026) · Journal of Patient Experience · doi:10.1177/23743735251415090
Foster, S. D., Bock, J. E., & Herrell, C. T. (2026) · Research in Autism · doi:10.1016/j.reia.2026.202899
Babalola, T. T., Moss, R., Dipper, L. T., & Botting, N. (2026) · Journal of Autism and Developmental Disorders · doi:10.1007/s10803-026-07533-8
- Authors
- Muskat, B., Greenblatt, A., Nicholas, D. B., Ratnapalan, S., Cohen-Silver, J., Newton, A. S., Craig, W. R., Kilmer, C., & Zwaigenbaum, L.
- Affiliations
- Hospital for Sick Children (CA)
- University of Calgary (CA)
- University of Alberta (CA)
- Corresponding author
- Muskat, Barbara
- ORCID
- Venue
- Autism
- Publisher
- SAGE Publications
- Published
- 2016-07-08
- Volume
- 20
- Issue
- 8
- Pages
- 986-994
- ISSN
- 1362-3613 (ISSN-L)
- 1461-7005
- OpenAlex
- W2265419971
- Cited by
- 31
- References
- 47
- Citations by year
- 2026: 3 · 2025: 6 · 2024: 2 · 2023: 2 · 2022: 4 · 2021: 4 · 2020: 3 · 2019: 2 · 2018: 3 · 2017: 1 · 2016: 1
- FWCI
- 1.49
- Type
- journal article
- Language
- en
- Open access
- closed
- Locations
- Autism (publishedVersion)
- PubMed (publishedVersion)
- Funders
- Health Research Board
- Topics
- Life Sciences › Neuroscience › Cognitive Neuroscience › Autism Spectrum Disorder Research
- Health Sciences › Health Professions › General Health Professions › Patient-Provider Communication in Healthcare
- Social Sciences › Psychology › Clinical Psychology › Family and Disability Support Research
- Keywords
- autism spectrum disorder, diagnosis disclosure, pediatric emergency department, parental attitudes, healthcare provider perspectives, children with autism, parent-provider communication
- MeSH terms
- Autism Spectrum Disorder, Adolescent, Adult, Attitude to Health, Canada, Child, Emergency Service, Hospital, Female, Health Personnel, Hospitals, Pediatric, Humans, Male, Parents, Disclosure, Qualitative Research, Grounded Theory
About these checks
Registry, retraction, Cites and statistics results are computed, not judged, with one exception: a printed reference that no index lists is read once by a model before it counts as a citation error. Claims are extracted by a model and kept only when their quote appears verbatim in the text; each cited source is then checked, with a model’s help, for whether it says what the claim relies on. Those verdicts can be wrong — read the claim’s quote and the cited source before relying on one.
Statistics and arithmetic are recomputed, not judged.
Confidence bands are shown only for fields calibrated on our annotated test set. None is calibrated yet, so no band is shown.
What counts as a claim ›How we measure confidence ›How we check this ›
Are you an author, or do you see a problem with this page? Request a review
