Written by Christina Fortis, member of the 2025 CanFASD Trainee Program.
Fetal Alcohol Spectrum Disorder (FASD) is a neurodevelopmental disability associated with challenges that can make hospital experiences and exposure to the hospital environment overwhelming and stressful for many children and their families. Hospital environments are filled with unfamiliar sights, smells, sounds, and people. Routines that have been effective at home may not be as helpful for children with FASD who face unplanned hospital exposure. To reduce stress and ensure a safe and supportive environment for children with FASD, hospitals must utilize an FASD-informed approach and work collaboratively with healthcare providers, caregivers, as well as the child.
What is FASD-informed care for healthcare professionals?
- Understand what FASD is and is not: Usually, children with FASD do not have any physical indicators of their disability. This means that their functional abilities can be different from their developmental level and not always aligned with their chronological age. FASD affects memory, language, understanding, processing speed as well as behaviour. This is particularly important during hospitalization as children with FASD could require additional or unique support with hospital routine and medical instruction. It’s important to understanding behaviours as symptoms of an underlying brain- and body-based condition rather than labelling children with FASD as noncompliant, difficult, or oppositional. Learn more.
- Be Prepared and Proactive: If possible, parents of children with FASD are encouraged to plan ahead for hospitalization encounters, scheduled admissions, or medical appointments. Providers can also plan ahead by reaching out to families to ask about special supports or services their child may benefit from. These strategies could include social stories, sensory room preparation, coping tool kits, or simply ensuring their child has a private room if needed.
- Communication: Communication between hospital providers and families that involve children should align with the child’s cognitive processing speed and understanding. Here are some tips that can help:
- Use simple, concrete language
- Go slow and allow processing time
- Use visual aids
- Be brief and positive
- Request support from child life specialists: Child Life Specialists are trained to provide coping strategies and support for children during hospitalization experiences. They provide distraction, teaching, and strategies to promote coping and reduce stress and anxiety. Many hospitals across Canada provide child life services in emergency departments, outpatient clinics, and inpatient units.
How can hospitals create a supportive environment?
The first step is for hospital staff to acknowledge that hospitals can be chaotic and overstimulating for many people, not just children with FASD. Hospitals can work to accommodate sensory needs and keep the atmosphere calm. Tips to accomplish this include:
- Create “Quiet Zones”: These could be sensory rooms, designated corners in play spaces, or a dimmed private exam room away from the everyday chaos that occurs within the hospital environment.
- Tactile Comforts: Encourage families to bring their own pajamas or blankets for children to change into or lay on top of a hospital exam bed. Many hospitals also provide sensory items such as squish balls, fidget spinners, weighted blankets, and headphones.
- Adjust Lighting and Sound: Lights can be dimmed or turned down in patient rooms or exam rooms. Families can request hospital staff to turn off unnecessary hospital equipment or monitors that beep. Noise cancelling headphones are a useful strategy to block out these overstimulating noises and provide a gentler sensory input that can lower a child’s anxiety levels.
How can we empower children with FASD in the hospital?
Children with FASD should be directly involved in their care whenever possible. Children can be empowered to express their needs, fears, and preferences. This advocacy can support skill building during hospitalization and help set them up for success for any future experiences. Even allowing the child to choose which arm they get their injection in, or which flavor of popsicle they would like can be an empowering option for them. When children with FASD feel supported and validated, their hospital experience becomes less scary and more of a learning opportunity. Here are some helpful strategies to support children with FASD during hospitalizations:
- Use Kid-Friendly Explanations: When discussing medical treatments or procedures, providers and families should practice speaking to the child, and not just about them. Using words that they understand helps make the hospital feel less threatening. For example, say “arm hug” when describing a blood pressure cuff, and “band aid” instead of pulse oximeter. Encourage children to hold and manipulate the medical equipment and practice taking their parent’s temperature or their own.
- Encourage Questions: Let children know they can always ask questions or say when they feel nervous or scared. Some children with FASD might become dysregulated or act out rather than being able to verbalize how they are feeling. Providers and families are encouraged to validate all emotions and offer support when possible. An example of this would be if a child life specialist said, “It’s okay if you’re feeling nervous. Would you like us to explain everything that is happening, or would you prefer to watch a show to distract you instead?” Address any fears they bring up honestly and positively. Simply acknowledging their fears and providing strategies can significantly improve their experience (for example, headphones to drown out the noisy machines in their room).
- Support Coping Strategies: Many children with FASD already have strategies that support them when they become overstimulated. These can look like humming, rocking, chewing gum, or playing on a tablet in their room. Work with families to find out what these are, and encourage these strategies as long as they remain safe and it works for them. Child life specialists help children utilize these strategies and can also make suggestions for coping strategies other children have benefitted from or make recommendations based off their own professional expertise.
Supporting a child with FASD during hospitalization experiences is a team effort. Hospitals, providers, and caregivers are encouraged to work together and be understanding, flexible, adaptive, and practice FASD-informed care. Utilizing interventions that are FASD-friendly like clear communication, sensory accommodations, and involving the child and family at every step helps support a clinical environment that is less threatening and more empowering for children with FASD.
Additional resources
- CanFASD (2020). Patients with FASD: Tips for Healthcare Providers. – Practical tips for hospital staff on preparing for FASD patients, sensory accommodations, communication strategies, and caregiver involvement.
- CanFASD (2021). Issue Paper: Sensory Processing and FASD. – Highlights the impact of sensory environments (like hospitals) on individuals with FASD and the need for environmental adaptations
- Research in Developmental Disabilities (2017). Implementation and evaluation of health passport communication tools in emergency departments
- Akron Children’s Hospital (2023). Sensory Rooms and Carts for Calming Patients. – Example of a hospital implementing quiet sensory rooms with dim lighting, comforting objects, and child life support to ease anxiety in neurodiverse children
- CanFASD (2021). Webinar on Pain and FASD. – Notes that pain tolerance can vary widely in FASD (some have high tolerance, others low), underscoring the importance of caregiver input to interpret pain cues
- American Academy of Pediatrics – FASD Toolkit
- Association of Child Life Professionals – Featured Resources
