Sensory Overload And Communication Barriers Of Autistic Adults In Health Care Settings

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Sensory overload and overstimulation in autism refer to heightened sensitivity to sensory inputs like sound, light, or touch.

Autistic individuals may 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 in social 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.

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. https://doi.org/10.1089/aut.2020.0074

Key Points

1. The primary challenges for autistic adults in healthcare settings include sensory overload (particularly auditory) and communication barriers with healthcare providers.
2. Factors like background noise levels, providers’ understanding of autism, and communication styles significantly affect the healthcare experiences of autistic adults.
3. The research, while enlightening, has certain limitations such as a small sample size and potential selection bias towards highly educated, verbal autistic adults.
4. Understanding and addressing these challenges is crucial for improving healthcare access and outcomes for autistic adults, who often have higher health risks compared to the general population.

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).

While these challenges have been broadly identified, there is a need for more specific characterization of the sensory experiences and communicative barriers faced by autistic adults in healthcare settings.

This study aims to fill this gap by examining the particular difficulties autistic adults encounter in medical environments and their interactions with healthcare providers.

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 their autism diagnosis later in life (median age 36 years, range 13-57).

Measures

1. Background questionnaire: Collected information on demographics, health conditions, and autism traits using the 10-item Autism Quotient (AQ10-dim).
2. Health care experiences questionnaire: Included sections on sensory environments, communication with providers, and providers’ knowledge about autism.

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:

1. Hypothesis 1: Autistic adults experience greater sensory discomfort in healthcare settings. Result: Confirmed. Autistic participants were significantly more likely to find background sound levels unacceptable (OR 3.49, CI 1.25-9.72, p=0.017).
2. Hypothesis 2: Autistic adults experience more communication barriers with healthcare providers. Result: Partially confirmed. Autistic participants were more likely to feel misunderstood and have trouble navigating healthcare settings, but these differences were not significant after controlling for co-occurring conditions.

Qualitative findings:

Theme: Reducing sensory input intensity and clutter

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)

Theme: Maintaining calm and predictability in personal space

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)

Theme: We speak different languages—please meet me halfway

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)

Theme: The need to feel safe and stress-free

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)

Theme: Increasing awareness of heterogeneity and camouflaging in autistic adults

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 effective masking 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 findings highlight that auditory sensory overload is particularly problematic for autistic individuals in medical environments. This extends previous research by emphasizing the importance of sensory aspects in healthcare settings and suggesting specific, reasonable adaptations.

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.

These findings extend previous research by providing a more nuanced understanding of the sensory and communicative challenges faced by autistic adults in healthcare settings.

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:

1. Mixed-methods approach, providing both quantitative and qualitative insights
2. Inclusion of a non-autistic control group for comparison
3. Consideration of co-occurring conditions like ADHD and anxiety in the analysis
4. Recruitment of an often underrepresented group in autism research (females and gender-diverse individuals)
5. Detailed qualitative analysis providing rich, contextual information

Limitations

The study had several limitations:

1. Small sample size, limiting statistical power and generalizability
2. Selection bias towards highly educated, verbal autistic adults
3. Narrow demographic group (predominantly Swedish, female or gender-diverse, middle-aged)
4. Lack of matching between autistic and non-autistic groups on health status or exposure to healthcare settings
5. Potential confounding due to collinearity between autism and co-occurring conditions

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

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. https://doi.org/10.1089/aut.2020.0074

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

Keep Learning

1. How might the healthcare experiences of autistic adults differ in countries with different healthcare systems or cultural attitudes towards autism?
2. In what ways could the “double empathy problem” manifest in other professional settings beyond healthcare? How might we address this issue more broadly?
3. How might the sensory and communication challenges identified in this study intersect with other aspects of identity, such as race, gender, or socioeconomic status?
4. What ethical considerations should be taken into account when designing healthcare environments that accommodate autistic sensitivities while also meeting the needs of other patients?
5. How might the findings of this study inform the design of healthcare education programs? What changes could be made to better prepare future healthcare providers to work with autistic patients?
6. Given the limitations of this study, what would be the most important next steps in research to further our understanding of healthcare experiences for autistic adults?
7. How might the late diagnosis of autism in many of the study participants have influenced their healthcare experiences and their perspectives on those experiences?
8. In what ways could technology be leveraged to address some of the communication and sensory challenges identified in this study?
9. How might the concept of neurodiversity inform our approach to healthcare delivery for autistic individuals? What are the potential benefits and challenges of adopting a neurodiversity-affirming approach in healthcare settings?
10. How could the insights from this study be applied to improve healthcare experiences for individuals with other neurodevelopmental conditions or sensory sensitivities?