Designing for Autism and Neurodiversity in the Emergency Department
Challenge
The emergency department (ED) is a chaotic and unpredictable place. For neurodiverse and autistic people, who often have social communication barriers, restrictive behaviors, and sensory maladaptation, this environment has an even greater impact on patient experience. Care delivery also has unique challenges for this group: neurodivergent people may experience stress in circumstances where others don’t, find it difficult to express their needs or have difficulties with self-regulation. Research shows that individuals with autism are more likely to be restrained or sedated, experience incomplete or delayed care, and report more unmet needs with care received than their neurotypical counterparts1,2,3,4.
Aim
Environmental stress is at the root of many negative emergency experiences, therefore we investigated how emergency department design may minimize stress and provide opportunities for calm or respite, so that people with autism may have an improved healthcare experience.
Approach
We conducted a literature review, industry expert interviews and case study analyses. We synthesized insights and created stakeholder narratives and journey models, exploring the complex variation of patient needs for this population through a lens of empathy and detail. The research culminated in the creation of a visual design guide that suggests emergency environment design, at multiple scales, might accommodate and meet the varied needs of patients with autism.
What We Learned
Literature Review: Identifying Pain Points and Opportunities for Design
Research illuminated four major pain points that designers can seek to remedy. These pain points include: lengthy and unpredictable wait times; loud and crowded environments with little agency to adjust; a lack of understanding from the staff on how to communicate with and provide clarity for people with autism; and under- or over-reliance on the patient’s caregiver in care delivery. Notably, most literature focused on pediatric healthcare settings, and design for adults on the autism spectrum remains a major gap —and opportunity — for health care researchers and designers.
Expert Interviews: Designing Beyond the Baseline
Experts agreed that providing spaces for calm and refuge should be the number one priority when designing for this population. The emergency department is overstimulating by nature. And everyone, regardless of their sensory profile, needs respite. Design interventions may be simple but effective: a small room with a door, dimmable lights, and a rocking chair or bean bag that separates the individual from overcrowding and loud noise. However, experts challenged that siloing people with autism is not an inclusive approach, and they prompted designers to think about accommodations more creatively. For example, space can be zoned and layered with sensory accommodations to ensure access to as many people as possible and meet diverse user needs.
Case Studies: From Universal to Highly Specialized
Case study exploration revealed three major approaches towards autism-friendly emergency care: transform the typical, dedicated and staged and augmented flex rooms. Two facilities that included more than one of these approaches were selected for deeper analysis.
The first facility was a pediatric emergency department that implemented a deployable sensory kit within existing exam spaces. The second location was an emergency department with two highly specialized treatment rooms for patients on the autism spectrum, with one space dedicated for children and the other for adults. The deployable sensory kit, while successful in providing inclusive access to accommodations, declined in use over time due to its transient nature, staff turnover, and lack of familiarity with available interventions. The specialized and dedicated sensory rooms, while widely appealing, had challenges with clinical functionality and were similarly underutilized. These two design models have made major strides towards accommodating autism in healthcare design, but they also underline the need for more integrated design and operational strategies that have improved feasibility, longevity, and impact.
At both facilities, staff opted to place patients with autism in flex treatment rooms to ensure safety and clinical functionality. They were excited about the opportunity to transform and augment those spaces with color or technology into more sensory appealing rooms.
What We Did: A Design Guide Driven by Empathy
We created twelve stakeholder narratives: three that touch on pediatric and caregiver experiences, three adult perspectives, and six staff that might care for patients on the autism spectrum. Autism is a widely varied experience: these stakeholder narratives acknowledged that people on the autism spectrum might think, process senses, move, communicate, socialize, and live differently.
We identified that space must balance choice and access with clinical functionality, and that awareness about patients experience and changing needs is critical in a clinical setting. For example, a separate room is not suitable in situations where patients fear missing an appointment, situations where staff need to constantly monitor patients, or where visitors are unfamiliar with available spaces and amenities.
Based on our learnings and discoveries, we developed a report and visual design guide. The report features the following six consideration for designers to take forward when accommodating autism in the emergency departments:
- Ensure situational awareness. Staff, patients, and caregivers can anticipate events and have awareness of available resources. Patients are prepared for next steps. Awareness is particularly important for individuals on the autism spectrum, who are more reliant on routines.
- Provide choice and control. Patients and caregivers can adjust their microenvironment without staff assistance. They are well-informed on available resources and can access them or retrieve them independently. Choice and control is increasingly emphasized for adults without a caregiver or advocate.
- Intuitive and Inclusive. Accommodations are widely available and readily utilized. Access is not limited to those who give a disclosed diagnosis or have an advocate with them. This is especially relevant in adult settings, where individuals may not have an advocate with them, or for individuals that use nonverbal communication.
- Protect spaces for calm and refuge. Given the stressful default of the emergency department, areas of refuge and various coping strategies are available to patients and staff.
- Safety and Security. The design of the environment anticipates and protects against injury, infection, or traumatic incident for staff, patient, and caregiver.
- Accommodations are integrated and durable. Sensory accommodations are regularly and readily incorporated into care delivery, across the system and from touchpoint to touchpoint. Application is consistent across staff and over time.
