The Center For Health Design
Why does this study matter?
Because autistic adults have an elevated risk of many health problems compared with the general population, stressful and inefficient health care experiences have the potential to further negatively impact the health and well-being of those with autism. To overcome the trepidation experienced by those providing and accessing healthcare, there is a need to understand and overcome specific challenges regarding sensory experiences and communicative barriers. The goal of this study was to identify problematic patterns of sensory and communication experiences for autistic adults.
How was the study done?
"The researchers conducted an online survey in Sweden between May and September 2019 designed to “help improve environments, communication and knowledge in heath care situations” from the perspective of autistic patients. The study used a snowball recruitment strategy of women, men and transgender people, with and without neurodevelopmental diagnoses via social media platforms. An anonymous online questionnaires was used for data collection. It included questions about demographics, a 10-item Autism Quotient section for autistic characteristics, questions about the number and type of psychiatric and somatic conditions that were used to estimate individual health burden, sensory questions that were rated using a 5pt Likert response scale, and 6 open-ended healthcare questions (4 about the environment and 2 about communication). The settings that questions pertained to included waiting rooms, examination rooms, common rooms and patient rooms in outpatient and inpatient somatic and psychiatric healthcare clinics.
What do we learn from the study?
The response sample consisted of 98 respondents, 62 of whom were autistic. Most respondents were born in Sweden, young (m=36), well-educated (graduated at least high school), and female or gender diverse. Anxiety disorders, ADHD, depressive disorders, and exhaustion were the most common co-occurring conditions with autism. Questions relating to communication revealed a desire to feel safe and stress free. Suggestions for improved personal interactions related to clinicians communicating in writing, by reframing and through repeating information. Environmental stressors that impeded communication related to the effects of sensory unpredictability and the inability to exercise control over the immediate environment, including odors, movement, and the proximity of other people. Questions relating to sensory processing gave rise to the intensity of a variety of stimuli. Background sounds were perceived to be particularly stressful and exhausting to autistic respondents. Olfactory and tactile stimulus was also a source of sensory overstimulation in autistic respondents. Bright, flickering and non-diffused lights, clutter, unpleasant colors, temperature and ventilation were mentioned by both autistic and nonautistic respondents.
Can we say the results are definitive?
While the relatively small sample of individuals with and without autism may have been subject to selection bias and was not matched on health status or exposure to health settings, the internet-based recruiting strategy did enable researchers to effectively reach representation of females, gender-diverse, and older adults that are generally absent within the autism literature. Future studies would also benefit from finding ways to engage similarly marginalized populations on their terms.
What’s the takeaway?
In the “telephone line” game the amusement comes from comparing what was originally said with what was eventually heard. Miscommunication or misinterpretation of information in healthcare settings, however, is far from amusing. Effectively communicating healthcare information is a medical issue; assuring access to the healthcare environment is a design issue. Architecture and interior design of a space aid us in our interactions with our surroundings and communication with one another.
Summary of:
Strömberg, M., Liman, L., Bang, P., & Igelström, K. (2022). Experiences of sensory overload and communication barriers by autistic adults in health care settings. Autism in Adulthood, 4(1), 66-75.
Our slidecasts are an outcome of the popular Research Matters presentations at the annual Healthcare Design Expo & Conference. Our research team picks papers that have some significance to the healthcare design community and distill the study down into a 5-minute summary of how the study was done, what was learned, the limitations and the takeaway. The slidecasts bring research to you in digestible format. Just five minutes, and you’ll know more.
Dr. Abushousheh is an Organizational and Environmental Gerontologist and Researcher Associate for The Center for Health Design. With combined expertise in architecture, organizational development, gerontology and applied research, Addie advances comprehensive and translational agendas related to quality assessment and performance improvement for aging and dementia in the continuum of care. In addition to publishing and presenting, Addie is a tri-chair of the Facility Guidelines Institute’s residential document group, maintains an adjunct faculty appointment at Kent State University, is a member of the Moving Forward Coalition, is a Board Member for IDEAS Institute, and serves as an Advisor to Abacus Institute and The AIA’s Design for Aging Knowledge Community.