Autism comes to the hospital: the experiences of patients with autism spectrum disorder, their parents and health-care providers at two Canadian paediatric hospitals.
Hospital staff who ask parents about sensory triggers and honor parent know-how make care safer and faster for autistic kids.
01Research in Context
What this study did
Barrett et al. (2015) talked to 80 people at two Canadian children’s hospitals. They asked kids with autism, parents, nurses, and doctors what going to the hospital feels like.
The team used long interviews and small group chats. They wanted to know what helps and what hurts during a hospital stay.
What they found
Bright lights, beeping machines, and strangers touching them upset many kids. Some children stopped talking or tried to run away.
Parents said, “We know our child best.” When staff listened, care went smoother. When staff ignored them, kids melted down and stays got longer.
How this fits with other research
Logos et al. (2025) asked autistic adults about police stops. Both studies show the same core problem: new places, bright lights, and odd social rules overload autistic people. The hospital paper starts the story in childhood; the police paper shows it continues into adulthood.
Li et al. (2015) found that preschoolers with lower skills fight dental exams. Barbara’s team saw the same fight in hospital rooms. Together they say: check sensory needs and behavior level before any procedure.
Mahdi et al. (2018) listed 110 ways autism affects daily life. Barbara’s stories fit right in: sensory pain, need for sameness, and parent expertise are three of those 110. No clash—just more detail.
Why it matters
Next time you send a client to the ER, add a one-page note: best reinforcers, sensory triggers, and how the child shows pain. Hand it to the nurse and say, “Mom knows the plan—call her first.” This small step can cut meltdowns and shorten stays.
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02At a glance
03Original abstract
Youth with autism spectrum disorder are a vulnerable, often poorly understood patient group, who may experience periodic and chronic health challenges, in addition to their primary developmental social and communication problems. Developmental and behavioural challenges can complicate management of acute health-care needs. To date, there is an absence of empirical research exploring the hospital experiences of children and youth with autism spectrum disorder, their families and their health-care providers. Therefore, the purpose of this study was to understand these experiences in order to inform hospital-based care. A total of 42 participants were interviewed (youth with autism spectrum disorder, their parents and health-care providers) at one of two Canadian paediatric hospitals, representing 20 distinct cases of patients with autism spectrum disorder. Results from the qualitative analyses indicated that patients with autism spectrum disorder faced several challenges in the context of health-care delivery in the hospital setting, as did their families and health-care provider team. Problems identified included communication and sensory challenges, and the degree of flexibility of health-care providers and the hospital organization. Supportive health-care providers were those who acknowledged parents as experts, inquired about the requirements of patients with autism spectrum disorder and implemented strategies that accommodated the unique clinical presentation of the individual patient. These recommendations have wide-reaching utility for hospital and health-care practices involving this patient group.
Autism : the international journal of research and practice, 2015 · doi:10.1177/1362361314531341