Barriers to healthcare and a ‘triple empathy problem’ may lead to adverse outcomes for autistic adults: A qualitative study. (Journal)

Autistic adults often experience significant health disparities, including more co-occurring health conditions and shorter lifespans compared to non-autistic individuals. Despite efforts to address these issues, autistic individuals continue to encounter barriers to healthcare. This study focuses on autistic people's experiences in accessing primary healthcare and introduces a model to explain how these barriers contribute to adverse health outcomes. A key focus is the "triple empathy problem," building on the established "double empathy problem" theory in autism studies. Based on my personal experience, nearly every AFAB person I’ve worked with in therapy has described the identified themes discussed in this study.

Methods

  • An international survey collected data from 1,248 autistic adults. The study employed a thematic analysis of qualitative data to identify barriers to healthcare access. The research team included autistic individuals and medical professionals.

Results

  • Theme 1: Early Barriers: Autistic adults often struggle with interoceptive differences, such as difficulties in interpreting bodily sensations and pain thresholds, which delay healthcare-seeking behaviors. Making appointments posed challenges, mainly due to phone-based systems, and the unpredictability of healthcare environments (e.g., waiting rooms) led to sensory overload for many respondents.

  • Theme 2: Communication Mismatch. Differences in communication styles between autistic individuals and healthcare professionals created further obstacles. Respondents reported being misunderstood or dismissed by healthcare staff, often needing to mask their autism to be taken seriously.

  • Theme 3: Doubt – In Oneself and From Doctors. Many autistic individuals experienced self-doubt about whether their symptoms warranted medical attention. Negative relationships with healthcare providers exacerbated these feelings, leading to mistrust and diagnostic overshadowing, where their concerns were attributed to autism rather than being treated seriously.

  • Theme 4: Helplessness and Fear. Many respondents felt helpless and fearful about seeking healthcare due to repeated negative experiences. They described learned helplessness, where they felt the system could not meet their needs. Fear of repercussions, such as being misunderstood or mistreated, further discouraged engagement with healthcare services.

  • Theme 5: Healthcare Avoidance and Adverse Outcomes. As a result of these barriers, many respondents avoided healthcare altogether, leading to severe and sometimes life-threatening outcomes. Delayed diagnosis and treatment for conditions such as tumors, heart conditions, and pregnancy complications were commonly reported.

Proposed Model: How Barriers Lead to Adverse Health Outcomes

  • The study presents a model that illustrates how various barriers—such as unpredictability, communication mismatches, and learned helplessness—contribute to healthcare avoidance and serious health consequences. The model emphasizes a need for greater awareness and accommodations in healthcare settings for autistic patients.

A Triple Empathy Problem

  • The authors introduce the concept of a "triple empathy problem," which suggests that misunderstandings between autistic individuals and healthcare providers are exacerbated by a third layer of empathy breakdown—between patients, doctors, and the medical system itself. The model expands on the double empathy problem, which highlights communication difficulties between autistic and non-autistic individuals.

Recommendations for Healthcare Access

The Autistic SPACE framework provides a structured approach for healthcare professionals to enhance their care for autistic patients.

  • Sensory Needs: Recognizing and adjusting for sensory sensitivities, such as bright lights, loud noises, or overwhelming environments, that can cause distress for autistic patients.

  • Predictability: Creating a predictable healthcare experience by offering clear, step-by-step information about procedures and minimizing uncertainty, which can reduce anxiety for autistic patients.

  • Acceptance: Fostering an accepting and non-judgmental atmosphere that validates the individual’s experiences and needs, helping patients feel more understood and respected.

  • Communication: Adapting communication styles to suit the needs of autistic individuals, such as offering alternative methods (e.g., written communication) and ensuring clarity to avoid misunderstandings.

  • Empathy: Demonstrating genuine empathy by seeking to understand the unique perspectives and challenges faced by autistic patients, building trust, and improving patient-provider relationships.

The study is consistent with neurodiversity advocacy efforts to make medicine more accessible for neurodivergent people. It highlights the need for systemic changes in healthcare to improve outcomes for autistic individuals and suggests that involving more autistic professionals in healthcare could be part of the solution.

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