Effective communication is essential in health care for accurate diagnoses, quality patient care, and positive outcomes (Ratna, 2019). However, communication barriers can significantly impact the health care experience, particularly for individuals with autism spectrum disorder (ASD) (Saqr et al., 2018). Autistic adolescents encounter unique challenges due to differences in communication styles that may not align with typical expectations (Araujo, Mophosho, & Moonsamy, 2022; Nicolaidis et al., 2015). ASD is a neurodevelopmental condition characterized by variations in communication, social interaction, and behavior. The communication abilities of autistic individuals vary widely, ranging from nonverbal to highly advanced language skills. Even those with advanced language may struggle with the social nuances of communication, such as interpreting tone, body language, or indirect speech.
Many autistic teens find health care environments challenging; the unfamiliar environments and complex interactions can increase stress and impede effective communication. This article aims to identify barriers faced by autistic individuals in health care contexts and explore how health care providers can adapt their communication approaches to better support autistic patients.
Interviews
Six autistic individuals ages 15 -17 and eight parents of autistic teens were interviewed to explore communication barriers experienced during doctor appointments. The autistic individuals provided first-person accounts of their communication experiences with medical providers, whereas parents shared insights into their teen’s communication challenges and the effects of these challenges on health care experiences. The interviews focused on two primary questions: What communication barriers do you experience when dealing with your doctor(s)? What specific changes in communication methods would help decrease these barriers?
Interviewing Autistic Teens
An analysis of the interviews revealed three general communication barriers the teens reported during medical appointments: difficulty with abstract language, feeling pressured to respond quickly, and physical touch during examinations. The barriers are further explained below.
Barrier 1. Abstract or Ambiguous Language – Several autistic teens expressed difficulty in understanding abstract language or metaphorical expressions that doctors often use. Words or phrases like “We’ll take a look” or “How have you been feeling lately?” were perceived as unclear or even confusing, which sometimes led them to give inaccurate responses.
Teen’s comment: “I don’t always understand what the doctor is asking because they use expressions I’m not familiar with. I wish they would speak more directly.”
Barrier 2. Pressure to Respond – All six teens reported that the pressure to respond quickly and accurately often led to increased anxiety, impairing their ability to communicate clearly. Many felt rushed during appointments, leading to incomplete communication of symptoms or concerns.
Teen’s comment: “Doctors expect me to answer quickly, but I need time to think about what they’re asking. When they rush me, I can’t give a good answer. Or they keep asking questions while I am answering their previous question. I then get frustrated.”
Barrier 3. Physical Examinations – Four of the six autistic teens mentioned that physical touch during examinations was a significant barrier for them. They shared that they often feel uncomfortable or even distressed by the physical contact, which doctors do not always explain adequately beforehand. This can cause anxiety that makes it difficult to focus on the conversation or express needs.
Teen’s comment: “I don’t like being touched, especially by people I don’t know well. It makes it hard to pay attention when they’re asking questions at the same time.”
Interviewing Parents
An analysis of parent interviews revealed three general themes impacting autistic teens during medical appointments: sensory sensitivities, verbal expression and processing delays, and a general lack of autism awareness among healthcare providers. Below is a more in-depth look at the themes.
Theme 1. Sensory Sensitivity – Parents emphasized that sensory sensitivities—such as discomfort with bright lights, loud noises, and strong smells—often prevented their teens from communicating effectively during medical appointments. Even though medical environments are rarely designed with sensory sensitivities in mind, many autistic individuals are unable to focus on communication when overwhelmed by sensory stimuli, which can result in shutdowns or even refusal to attend appointments.
Parent Comment: “My son can’t handle the fluorescent lights and constant noise in the doctor’s office. By the time he sits down with the doctor, he’s too overwhelmed to communicate anything.”
Theme 2. Processing Delays – Parents noted that autistic teens usually need extra time to process questions and respond, which is often not allowed in fast-paced health care settings. This can lead to frustration for both the patient and provider and may result in incomplete or misunderstood information being conveyed.
Parent Comment: “Doctors often seem impatient, especially when my daughter needs extra time to process the question and respond. She sometimes shuts down and doesn’t answer at all.”
Parent Comment: “One time, I requested extra time for our appointment. We received an extra 15 minutes, but the doctor then billed us an extra $300!”
Theme 3. Lack of Understanding – Many parents felt that health care providers lacked awareness about autism-specific communication needs. Some described instances where medical providers interpreted their teen’s behavior as rudeness or defiance rather than a response to stress or sensory overload.
Parent Comment: “We’ve had doctors tell us my son is ‘uncooperative’ when he just doesn’t understand the questions or feels too anxious to respond.”
Recommendations for Improving Communication
When autistic individuals and parents were asked about their recommendations to help health care providers minimize communication barriers, five recommendations emerged.
- Use Literal Language – Health care providers should use direct, literal language, avoiding idioms, metaphors, or overly abstract questions. Statements like, “Let’s examine your throat to make sure there’s no infection” instead of “Let’s take a look” were suggested to minimize confusion.
- Extra Time for Processing – Providers should allow autistic patients additional time to process questions and formulate responses. This can alleviate the anxiety associated with rushed interactions and help ensure that patients provide accurate information.
- Sensory-Friendly Accommodations – To address sensory sensitivities, medical facilities can implement simple adjustments, such as (a) reducing lighting intensity or allowing the use of sunglasses; (b) providing noise-canceling headphones or quiet spaces; (c) allowing the patient to bring familiar sensory items, such as fidget toys or weighted blankets, to appointments.
- Increased Trainings – Health care professionals would benefit from training that highlights autism-specific needs, such as learning de-escalation techniques for managing anxiety, understanding sensory accommodations, and practicing patience with processing delays.
- Develop Communication Plans – A communication plan tailored to each autistic patient’s preferences could be a valuable tool. This plan might include preferred language style, specific sensory triggers, and other individual needs, allowing providers to engage with the patient in a consistent, accommodating manner across appointments.
Conclusion
Autistic individuals face numerous communication barriers in health care settings, ranging from sensory overload and the use of abstract language to the need for more time during interactions. Based on interview insights, these challenges underscore the need for more accommodating and autism-informed healthcare environments. By using patient-centered communication methods—such as literal language, extra processing time, and sensory accommodations—health care providers can significantly reduce barriers and enhance the overall patient experience. With further research and continued professional training, health care providers can better meet the needs of autistic teens, promoting trust and improving health outcomes for this population.
Heidi Hillman, PhD, BCBA-D, LMHC, is an autistic researcher and professor at Eastern Washington University. For more information, please contact Heidi Hillman at hhillman@ewu.edu.
References
Araujo, M., Mophosho, M., & Moonsamy, S. (2022). Communication strategies used by adolescents with autism spectrum disorder and health professionals during treatment. African Journal of Disability, 11, 811.
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.
Ratna, H. (2019). The Importance of Effective Communication in Healthcare Practice. Harvard Public Health Review, 23, 1–6.
Saqr, Y., Braun, E., Porter, K., Barnette, D., & Hanks, C. (2018). Addressing medical needs of adolescents and adults with autism spectrum disorders in a primary care setting. Autism, 22(1), 51-61.
