Parent and health care provider perspectives related to disclosure of autism spectrum disorder in pediatric emergency departments.
Parents want to tell ED staff about autism, but only if you ask privately and frame it as a care plan, not a label.
01Research in Context
What this study did
Muskat et al. (2016) interviewed 23 parents and 28 emergency-department staff in two hospitals. They asked how families decide whether to tell nurses and doctors that a child has autism.
The team recorded the talks, coded every sentence, and grouped the ideas into themes.
What they found
Parents saw two sides. Telling staff can speed care because workers then lower lights, speak plainly, or allow comfort items. Yet parents also feared stigma and worried the child would overhear the label.
Staff agreed disclosure helps but said they rarely ask. Everyone wanted a private, respectful way to share the diagnosis.
How this fits with other research
Bitsika et al. (2020) moved the same question to police stops. Autistic adults there were even less willing to reveal diagnosis and rated the encounters far worse than parents did in the ED. The gap shows disclosure risk rises when the authority figure carries a badge and a gun.
Green et al. (2020) added the autistic voice: adults said officers often misread stimming as suspicious. Their advice—train police with autistic trainers—matches parents’ plea for positive, stigma-free wording in the hospital.
Together the three studies trace a line: parents weigh benefits and risks in the ED, but autistic adults in the community later face harsher consequences for the same decision.
Why it matters
Next time you escort a client to the ED, pull the nurse aside and say, ‘He has autism—here’s what helps.’ Keep the child out of earshot. One sentence can cut wait time and trauma without tagging the child in front of peers.
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02At a glance
03Original 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.
Autism : the international journal of research and practice, 2016 · doi:10.1177/1362361315621520