Sensory overload and overstimulationin autism refer to heightened sensitivity to sensory inputs like sound, light, or touch.
Autistic individualsmay experience everyday sensory stimuli as overwhelming or painful, leading to stress, anxiety, or difficulty focusing. This can significantly impact their ability to function in various environments, including healthcare settings.
Communication barriers for autistic individuals often stem from differences insocial communication, e.g., processing and interpreting social cues, language, and non-verbal communication.
They may struggle with understanding implicit meanings, interpreting body language, or expressing themselves in ways neurotypical individuals expect. These challenges can lead to misunderstandings and difficulties in effectively conveying or receiving information.
Key Points
Rationale
Autistic adults face an elevated risk of various health problems compared to the general population, making healthcare access particularly critical for this group (Croen et al., 2015; Hirvikoski et al., 2016).
However, previous research has shown that autistic people often find healthcare settings aversive, and many medical providers report feeling unsure about how to interact with autistic patients (Nicolaidis et al., 2015; Unigwe et al., 2017).
Understanding these specific challenges is crucial for developing targeted interventions and improvements in healthcare delivery for autistic adults.
Method
Procedure
The study employed a mixed-methods approach, combining quantitative and qualitative data collection and analysis.
Participants completed an anonymous online questionnaire about improving healthcare experiences.
The questionnaire covered demographics, sensory experiences in medical settings, and communication with healthcare providers. It included both multiple-choice and open-ended questions.
Sample
The study included 98 Swedish adults (62 autistic and 36 non-autistic). The cohort was predominantly female or gender-diverse, middle-aged, and well-educated.
Autistic participants had received theirautism diagnosislater in life (median age 36 years, range 13-57).
Measures
Statistical measures
The study used logistic regression to examine associations between autism diagnosis and experiences of sensory discomfort and communication barriers in healthcare settings.
The analysis controlled for age, ADHD, anxiety, and depression. Qualitative data were analyzed using reflexive thematic analysis.
Results
Quantitative findings:
Qualitative findings:
This theme encapsulates the need for minimizing sensory overload in healthcare environments. Participants emphasized the importance of controlling light levels, reducing background noise, and creating less cluttered spaces.
“In the psychiatric clinic, they know that I don’t like fluorescent lights and have sometimes turned off the ceiling light when I come in. I appreciate that, it makes it easier for me to focus on the conversation.” (Autistic gender divergent, 35)
This theme highlights the importance of creating environments where autistic individuals can feel safe and in control of their immediate surroundings. Participants expressed a desire for spaces that allow for physical distance from others and reduce unpredictability.
“There should always be chairs/spots where no one can sit down next to you, so that you can sit alone. There should be possibilities to have a wall behind your back so that people can’t sit or be behind you.” (Autistic female, 45)
This theme addresses the communication challenges between autistic individuals and healthcare providers. Participants emphasized the need for clear, explicit communication and the importance of providers adapting their communication style to meet autistic needs.
“It would be nice to get exceedingly clear instructions. […] ‘Have a seat’ vs ‘sit down there and wait’ are very different. Especially if there are different places to sit […]. Also, knowing if one should pay immediately or not until afterwards or what’s about to happen.” (Autistic female, 55)
This theme underscores the importance of creating a low-stress environment in healthcare settings. Participants described how stress and anxiety can interfere with their ability to communicate effectively and process information.
“Filling out forms (e.g., in the waiting room) to get as much information as possible. It gives better responses because you get to think it through. Questions that I never thought about before have usually [resulted in] the wrong answer, because I’m too stressed to give an answer fast.” (Autistic female, 53)
This theme highlights the need for healthcare providers to recognize and respect the diversity within the autism spectrum. Participants expressed frustration with providers who questioned their autism diagnosis or failed to recognize their needs due to effectivemasking of autistic traits.
“I want them to ASSUME that what I tell them about myself is true, honest and reasonable. They often don’t. And that they accept a seriously given [autism] diagnosis.” (Autistic male, 50)
Insight
This study provides valuable insights into the specific challenges autistic adults face in healthcare settings.
The study also reveals a “double empathy problem” in communication between autistic patients and healthcare providers.
Providers often misunderstand autistic adults’ body language or eye contact patterns, interpreting them through neurotypical expectations. This insight is particularly informative as it highlights how communication barriers can arise even when autistic individuals are socially skilled but do not use typical body language.
They suggest that improvements in healthcare experiences for autistic adults may require both environmental adaptations and enhanced provider training in autism-specific communication styles.
Future research could focus on developing and testing interventions based on these findings, such as sensory-friendly healthcare environments or communication training programs for healthcare providers.
Additionally, studies exploring these issues in more diverse autistic populations, including minimally verbal individuals or those from different cultural backgrounds, would be valuable.
Strengths
The study had many methodological strengths including:
Limitations
The study had several limitations:
These limitations mean that the findings may not be generalizable to other autistic populations, such as minimally verbal individuals or those from different cultural backgrounds.
The small sample size also increases the risk of both Type I and Type II errors in the statistical analyses.
Implications
The results of this study have significant real-world implications for improving healthcare experiences and outcomes for autistic adults.
The findings suggest that relatively simple environmental modifications, such as reducing background noise and providing clearer signage, could significantly improve the healthcare experience for autistic individuals.
For clinical psychology practice, the study highlights the need for providers to be aware of and adaptable to the diverse communication styles of autistic adults.
This may involve providing written information, using more direct and literal language, and being cautious about interpreting non-verbal cues based on neurotypical expectations.
The study also emphasizes the importance of recognizing the heterogeneity within the autism spectrum.
Healthcare providers need to be aware that autistic traits may not be immediately apparent in some individuals, particularly those diagnosed later in life, and should be prepared to provide appropriate accommodations when informed of a diagnosis.
These findings could inform the development of autism-friendly healthcare environments and communication protocols, potentially improving healthcare access and outcomes for autistic adults.
However, it’s important to note that the effectiveness of such interventions would need to be tested in larger, more diverse populations.
Conclusion
Understanding the specific challenges autistic adults face in healthcare settings is crucial for improving their health outcomes and quality of life.
This study provides important insights into these challenges, particularly in the areas of sensory experiences and communication with healthcare providers.
While the research has limitations, it offers a foundation for developing more autism-friendly healthcare practices and environments.
Further research is needed to explore these issues in more diverse autistic populations and to develop and test interventions based on these findings.
As we continue to learn more about the diverse experiences of autistic individuals, it’s important to recognize the complexity of this topic and the need for individualized approaches in healthcare delivery.
Ultimately, improving healthcare experiences for autistic adults is not just about accommodating differences, but about creating more inclusive and effective healthcare systems that can better serve all patients, regardless of neurodiversity.
References
Primary reference
Other references
Croen, L. A., Zerbo, O., Qian, Y., Massolo, M. L., Rich, S., Sidney, S., & Kripke, C. (2015). The health status of adults on the autism spectrum.Autism,19(7), 814-823.https://doi.org/10.1177/1362361315577517
Hirvikoski, T., Mittendorfer-Rutz, E., Boman, M., Larsson, H., Lichtenstein, P., & Bölte, S. (2016). Premature mortality in autism spectrum disorder.The British Journal of Psychiatry,208(3), 232-238.
Nicolaidis, C., Raymaker, D. M., Ashkenazy, E., McDonald, K. E., Dern, S., Baggs, A. E., Kapp, S. K., Weiner, M., & Boisclair, W. C. (2015). “Respect the way I need to communicate with you”: Healthcare experiences of adults on the autism spectrum.Autism,19(7), 824-831.https://doi.org/10.1177/1362361315576221
Unigwe, S., Buckley, C., Crane, L., Kenny, L., Remington, A., & Pellicano, E. (2017). GPs’ confidence in caring for their patients on the autism spectrum: an online self-report study.British Journal of General Practice,67(659), e445-e452.https://doi.org/10.3399/bjgp17X690449
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Saul McLeod, PhD
BSc (Hons) Psychology, MRes, PhD, University of Manchester
Saul McLeod, PhD., is a qualified psychology teacher with over 18 years of experience in further and higher education. He has been published in peer-reviewed journals, including the Journal of Clinical Psychology.
Olivia Guy-Evans, MSc
BSc (Hons) Psychology, MSc Psychology of Education
Olivia Guy-Evans is a writer and associate editor for Simply Psychology. She has previously worked in healthcare and educational sectors.
