Accessing Healthcare Should Not be Dehumanising for Autistic People

Why would seeking help from the healthcare system leave us feeling worse than we initially felt?

This question resonates deeply, particularly within the autistic community, where the pursuit of medical help frequently results in feelings of dismissal, alienation, misunderstanding, being undermined, and despair. We autistic people encounter substantial and preventable barriers in the healthcare system, and the allistic society often deflects accountability by implying that autistic patients are unable to effectively communicate our health concerns. Is this truly the case? Or is it more about healthcare providers lacking basic accommodations, patience, and having unreasonable expectations for autistics to communicate like allistics? Such unrealistic expectations are utterly absurd and represent systemic ableism and inflict trauma on autistic people.

Why should autistic people bear the burden of communication adjustment to receive the appropriate care we rightfully deserve from healthcare providers?

Receiving the care and treatment we deserve should be fundamental in the healthcare system, but unfortunately, this is not the reality for many autistic people. Instead, the already complex system exploits communication differences and diverse expressions to dismiss autistic patients. For instance, there is a wealth of information available that teaches autistic people how to articulate and assert themselves better. However, why should the burden of communication adjustment fall on the patient? Is it not unreasonable to expect us, who are already navigating the complexities of our health issues, to also have to decode the often ambiguous language of healthcare professionals? We are also expected to figure out why healthcare professionals do not understand us and navigate the already intricate system while contending with their dismissive attitudes.

The reality is that dealing with health concerns is already a significant challenge, and the added expectation to educate providers on how best to communicate with us only compounds the stress and frustration. This unrealistic expectation results in us feeling invalidated, leading to a vicious cycle where we avoid seeking necessary medical care altogether for fear of being misunderstood or dismissed again. Shouldn't healthcare providers offer a safe space for us to express our diversity freely?

Do we have to create a stand-up routine to talk our health concerns in order to be heard?

This notion raises serious questions about the effectiveness of traditional communication methods in healthcare settings, the responsibility must lie with healthcare providers to facilitate better understanding and attention. Since health concerns are deeply personal and often filled with anxiety and uncertainty. As patients we frequently find ourselves navigating a labyrinth of medical terminology, bureaucratic procedures, and most of the times dismissive attitudes from those in positions of power.

This results in feelings of frustration and helplessness. Traditional ways of discussing health issues—whether in a doctor's office, a hospital, or even in casual conversations—often fail to capture the emotional depth necessary to highlight the urgency or significance of these issues. Consequently, the question is not merely whether healthcare providers should adopt a different approach; it is about how they need to shift their perspectives on how they view autistic people to ensure that every voice is heard and valued.

Why is it that autistics are expected to change our emotions or facial expressions to be taken seriously by healthcare providers?

The reality is that many healthcare providers consciously rely on non-verbal cues to gauge the seriousness of a patient's condition. This create a challenging dynamic and unfair treatment for autistic people, as we express our emotions differently than allistic people. It raises the question of whether we need to conform to certain emotional expressions or behaviours to be validated in our experiences. The pressure to appear "normal" or to demonstrate distress in a socially acceptable manner can feel like an additional burden, further complicating our interactions with the healthcare system.

It raises significant concerns about the expectations placed on people within the autistic community and highlights the broader implications of communication and understanding in healthcare settings. These expectations result in misunderstandings during healthcare interactions, where providers misinterpret a lack of typical emotional expression as disinterest or non-compliance. This misinterpretation significantly affect the health outcome, as healthcare professionals may diagnose based on assumption, engaging in predetermined decision making, or complete misunderstand the needs of their autistic patients. When we do not conform to these expectations for standard emotions or facial expressions, we are dismissed or not taken seriously, which lead to poor heath outcome and misdiagnosis that result in dire consequences.

The Burden of Adaptation

The expectation that autistics should change how we express emotions places an unfair burden on us. It suggests that the responsibility for effective communication falls entirely on the patient, rather than acknowledging the need for healthcare providers to adapt their approaches to accommodate diverse communication styles. This expectation leads to feelings of exclusion and alienation among autistic people, which results in masking our true selves in order to be understood. If we have to mask, it indicates that healthcare providers are failing us.

The Importance of Authenticity

The requirement to modify emotions leads to a loss of authenticity. We autistics have a unique way of experiencing and expressing emotions, which is valid and should be acknowledged in every setting. When we are pressured to conform to neurotypical standards of emotional expression, it leads to emotional distress and a sense of inauthenticity. This struggle can further exacerbate our physical health and mental well-being, creating a cycle of misunderstanding, miscommunication, and preventable poor health outcomes.

The Role of Healthcare Providers

Healthcare providers have a critical role to play in creating an inclusive and understanding environment. It is their responsibility to educate themselves about autism and to develop skills that enable them to communicate effectively with autistic patients. This includes being aware of the different ways emotions can be expressed and recognising that non-verbal cues may not align with conventional expectations. By adopting a more flexible and empathetic approach, healthcare providers can create a space where autistic people feel safe and valued.

When will the most basic reasonable adjustments be available in healthcare settings for autistic people?

This is a critical issue that highlights the necessity for systemic reform in healthcare settings. Reasonable adjustments—such as diverse communication methods, extended consultation times, sensory-friendly environments, safe spaces for expression and stimming, and the elimination of the need for autistic masking—should be considered fundamental rights for all autistic patients, not optional. The absence of such adjustments often leaves autistic people feeling unheard and invalidated, exacerbating existing health issues and causing unnecessary trauma and distress.

Personal Encounter with Dehumanising Healthcare

The questions mentioned earlier are the ones I repeatedly asked myself after being injured at home because of the negligence of builders and the wreckage they left after taking our money and disappearing. What was once a dream home has turned into an unrecognizable dumping ground filled with fear and trauma. I am not only confined to a place that no longer feels like home but also trapped in a cold, isolating environment where I feel stuck every day, with no help in sight. Whenever I reached out for help, I encountered dismissal, undermining remarks, and gaslighting from healthcare providers.

This entire experience has been extremely traumatizing; as if I am trapped in a cycle of trauma caused by unreliable builders and healthcare providers. It appears each healthcare provider had received a memo from the runaway builders that I am particularly easy to manipulate and gaslight, leading them to dismiss my concerns as trivial. The cumulative effects of these experiences have left me doubting not just my own worth but also the very systems that are supposed to provide support and treatment.

This cycle of trauma and invalidation created a deep sense of hopelessness, making it increasingly difficult to trust the very system that is meant to provide care and support. The emotional toll of feeling unheard and misunderstood is immense, as I struggle with feelings of helplessness and frustration, realising that my voice goes unheard in healthcare settings. It is imperative that we continue to advocate for ourselves and push for the necessary changes within the healthcare system to ensure that people like us receive the respect and understanding we rightfully deserve. Only then can we hope to transform our experiences from ones of trauma into pathways of improved accommodation and support.

A Call for Humanity

My personal encounter with dehumanising healthcare serves as a poignant reminder of the profound impact that a lack of empathy and personal connection can have on autistic people seeking medical help. The experience began when I encountered an unexpected accident that needed medical attention. Throughout this process, I realised that everyone was treated as just a number or a case to be solved, rather than a person with unique needs and concerns. This initial interaction set the tone for my entire experience, leaving me feeling more like a burden than a valued patient.

During this time, I observed the interactions among healthcare providers. Conversations were often focused on administrative tasks and avoiding accountabilities, rather than prioritising the wellbeing of the patients they were supposed to serve. It was disheartening to witness such a disconnect between the providers and those of us in their care, as if the human aspect had been stripped away in the pursuit of efficiency. I felt like I was being processed instead of cared for, with my concerns quickly dismissed as the doctor and physiotherapist moved on to the next patient.

The absence of a personal connection was intensified by the impersonal nature of the treatment itself. Before I lodged a complaint, I underwent no examination at all, and afterward, I was subjected to a series of tests and assessments that seemed more like a checklist than a comprehensive evaluation of my health. Each procedure was performed with a clinical detachment, leaving me feeling vulnerable and exposed, instead of supported and cared for.

As I left each medical appointment, I reflected on my experience and the implications of such dehumanising healthcare practices. It became clear to me that the system fails to acknowledge the importance of treating autistic patients as whole individuals with emotional, psychological, and social needs. The lack of empathy results in additional exclusion and despair, which impede my recovery and overall wellbeing.

These dehumanising experiences in healthcare underscore the urgent need for a shift in how healthcare providers interact and treat autistic patients. Healthcare providers must cultivate a culture of empathy and compassion, recognising that each medical case involves a person with our own story, pain, fears, struggles, and hopes. By emphasising the human side of healthcare, we can start to build a system that truly meets the needs of autistic people, promoting positive health outcome not just through medical intervention but also through genuine acknowledgment of autistic perspectives.

Healthcare: A Systemic Reform and Cultural Shift

The healthcare environment resembles a maze we never agreed to enter, filled with complex systems and processes that are difficult to navigate, especially when we are experiencing sensory overload or anxiety in such settings. As autistic people, we frequently have to contend with not only the physical aspects of our health but also the emotional strain of being in a space where our voices are often diminished. This situation is exacerbated by the unreasonable task of figuring out why healthcare providers might not understand our unique perspectives or experiences. The constant need to advocate for ourselves adds immense pressure when we are already overwhelmed by injury or health issues, especially when confronted with dismissive attitudes that undermine our concerns.

In addition, the lack of training and awareness among healthcare providers regarding autism leads to considerable and preventable misunderstandings. From my perspective, many practitioners are not equipped with the necessary skills to identify signs of distress or accurately interpret diverse non-verbal cues. This knowledge gap causes autistic patients to feel invalidated, creating a vicious cycle where we completely avoid seeking necessary medical care out of fear of being misunderstood or dismissed once again.

Advocating for Change

It should not be the responsibility of autistic people to ensure effective communication in healthcare services. There is an urgent need for systemic reform in healthcare systems to enhance awareness and understanding of autism. Implementing training programs for healthcare providers that focus on recognising and respecting neurodiversity can improve interactions between patients and providers.

While there may be instances where we autistic people feel the need to modify our emotions or expressions to be taken seriously by healthcare providers, it is important to recognise that this expectation is problematic. Expecting us to conform to neurotypical standards prevents mutual understanding and respect, as autistic masking harms our wellbeing. The responsibility should not rest on autistics to adapt; instead, the healthcare system should evolve to become more inclusive. Otherwise, how else can we develop a healthcare system that appreciates diverse expressions, ensuring that all autistic patients receive the care and consideration we deserve?

To establish a genuinely inclusive healthcare system, it is essential to focus on educating and training healthcare providers about autism. Healthcare providers have the responsibility to proactively seek education from autistic people, ideally not when we are already dealing with health issues, as it is unreasonable to expect us to educate while focusing on our own recovery and wellbeing. Inclusivity involves offering a safe space for diverse expression, a sensory-friendly environment, understanding the importance of active listening without assumptions, and adopting an empathetic approach that respects the unique communication styles of autistic people. By creating an environment that supports patient-specific dialogue and allows patients time to process the appointments, we can help bridge the gap. This means giving us the opportunity to ask questions later—because sometimes, we need a little time to think. This does not mean we have no questions; in fact, we have many questions and need answers. This is just one way to ensure that autistic people feel heard and validated.

Ultimately, the healthcare system must evolve to acknowledge the inherent value of every patient’s experience. Everyone, regardless of neurological makeup, deserves compassionate care. Achieving this goal requires not only systemic reforms but also a cultural shift within healthcare that embraces diversity in communication and expression. Let’s make sure every patient feels respected, understood, and cared for—because nobody wants to feel like we are just another number in the waiting room!

What has your experience been like with the healthcare system? Do you feel that healthcare providers pay attention to you?