Is Emergency Care Fit for Autistic Adults?

Attending emergency care is undoubtedly an unpleasant experience for anyone, regardless of the circumstances that lead to such a visit, but especially for autistic adults who are unfamiliar with this experience. Personally, I go to great lengths to avoid needing to go to emergency care, as I understand the immense pressure on emergency care and the strain that unnecessary visits can place on the healthcare system. I prefer to be proactive, taking every precaution possible to mitigate any unexpected situations that may arise, thereby reducing the likelihood of an emergency visit.

My aversion for A&E is not just due to the discomfort of enduring long waits in an overstimulating environment and the often sterile and chaotic hospital situations, but also because of a strong desire to preserve valuable resources for those in critical need. I take pride and enjoyment in maintaining my health by eating well, drinking well, and living well, as I firmly believe that prevention is better than cure. While handling minor injuries and health issues at home is not always necessary, I always keep a first aid kit and rely on the knowledge I've accumulated over the years. This approach has served me well, as I've often managed to prevent ailments without adding strain to the healthcare system.

However, life can be unpredictable, and despite my best efforts to remain alert and cautious during this testing time of navigating unsafe building practices, I recently encountered few accidents. I found myself in a situation where I needed urgent care due to multiple injuries I sustained in what should have been the safety of my own home—my sanctuary. These injuries were the result of careless work done by reckless builders, whose shoddy practices led to a hazardous environment that caused me significant harm. The irony of being injured in my own home, which I typically associate with comfort and security, was not lost on me.

The injuries I sustained were not just minor scrapes or bruises; they were severe enough to render me immobile, forcing me to confront the very reality I had always tried to avoid. As I lay there, grappling with the pain and frustration, I was faced with a decision that I had hoped never to make. The thought of calling for help and heading to A&E was daunting, yet the severity of my condition left me with little choice. It was a stark reminder of how quickly circumstances can change and how one can find themselves in situations that require immediate medical attention, regardless of their previous intentions to avoid such scenarios.

Ultimately, this experience has taught me that while it is wise to be cautious and to take preventive measures, it is equally important to recognise when the situation has escalated beyond what can be managed at home. Sometimes, the unexpected happens, and it is crucial to seek the help that is necessary, even if it means stepping into the uncomfortable environment of emergency care.

What It's Like to Wait in A&E as an Autistic Adult

When I first arrived at A&E, I was immediately engulfed by the somber atmosphere that permeated the busy environment of the hospital. This was not the lively hustle and bustle one might forgive with a vibrant food market, where dozen of delicious goodies beckon from every stall. Instead, the scene before me was characterised by a chaotic energy that felt overwhelmingly low-spirited, as if the very air was thick with a sense of despair.

Patients occupied nearly every seat and corner. The brightness of the lights was unforgiving, and the noise around me was relentless—the endless conversations, the heavy footsteps, the beeping of machines, and the call of a nurse or doctor—creating a soundscape that was both demoralising and distressing.

In that moment, I came to a stark realisation: my physical pain had completely overshadowed my usual preparedness. I had forgotten to bring my noise-cancelling headphones, reliable earplugs, and even my sunglasses, which might have offered some relief from the harsh lights. The absence of these small safeties in an emergency care setting heightened my discomfort, making me acutely aware of the surrounding chaos, transforming me into an autistic child in an adult's body.

As I waited in line, I quickly began to struggle with the simple task of checking in using the machine. My unfamiliarity with the rules of urgent care, the layout of the hospital, and the unspoken etiquette of where I was allowed to sit or stand made the process feel daunting. Finally, when it was my turn to approach the counter, I managed to find my voice, as I informed the staff member that I had checked in at the machine. As I stepped away from the counter, I felt lost in a maze of uncertainty, my mind racing with questions about what would happen next. All I wanted was to find a quiet corner, a secluded space where I could retreat from the noise and the crowd, hoping that somehow, in that solitude, the relentless pain that coursed through my body would dissipate.

Despite my efforts to bundle up against the chill, wearing thermals, layers upon layers of clothing, and my heavy winter coat, I still felt cold. The biting chill seemed to seep through my clothing, a stark reminder of my discomfort. I could feel the shivers running down my spine, a physical manifestation of the anxiety that gripped me. It was as if the cold was a parallel to the emotional numbness I was experiencing, a reflection of the distress that filled the very air I breathed. In that moment, I longed for warmth, not just in temperature but in the form of reassurance and comfort, a fleeting escape from the chaos that surrounded me.

How Overwhelming Emergency Care Can Be for an Autistic Adult

After the long, seemingly endless wait, I was finally called, and a flicker of hope ignited within me. However, I quickly realised that I was still in the triaging phase, where the focus is assessing the severity of my condition. I was handed a painkiller in a small paper cup, yet the person didn't disclose its name or any information about its effects or potential side effects. This lack of communication left me feeling uneasy and reluctant to take the medication, even as the throbbing pain in my body persisted and intensified.

Before I could ask questions or seek clarification about the medication, the person had already disappeared, leaving me in a state of confusion and vulnerability. Usually, I pride myself on my ability to process information quickly and efficiently, but this time was different. The overwhelming burden of coping with my injuries, compounded by the distressing reality of living in an unsafe home environment.

As I sat there, I found myself plunged back into an unforeseeable wait, filled with uncertainty and anxiety about what would happen next. My husband asked if I was hungry, but I couldn't bring myself to say yes. The physical discomfort I was experiencing was worsening by the realisation that I couldn't even recall the last time I had eaten. In that moment, I realised that my body seemed to have lost its ability to signal basic needs like hunger or thirst, which only added to my sense of disconnection from my own physical self.

The pain and worry I felt were not just confined to my injuries; they soaked into every aspect of my existence, leaving me feeling hollow and detached. It was as if my body had become a foreign entity, one that I could no longer trust to communicate its needs or to guide me through this challenging experience. I was grappling with the dual burden of physical pain and emotional turmoil, caught in a cycle of unknown and despair that felt inescapable.

The notion of being unprepared for the various stages of medical care felt daunting. It seemed imperative to me that there should be a structured way to guide patients through the complexities of their treatment. The anxiety surrounding the possibility of being perceived as a burden to the healthcare system weighed heavily on my conscience; I worried that my needs might be seen as an inconvenience rather than a legitimate ones. The challenge of articulating invisible pain—pain that cannot be quantified or easily seen—left me feeling vulnerable and isolated. And then there was the haunting thought of whether I should simply retreat, away from the overwhelming environment of the hospital, where I felt both exposed and misunderstood.

When I was finally seen, the process was alarmingly quick and devoid of compassion. I was yanked around by the examiner without even the courtesy of asking for my consent, which not only worsen my physical discomfort but also deepened my emotional distress. The abruptness of the examination made me feel worse, as if I were just another case to be processed rather than a human being in need of care.

I was overwhelmed with anxiety, my heart racing as I struggled to keep pace with the rapid-fire questions and assessments. I don't think I was given enough time to provide a comprehensive account of what had happened to me, nor was I afforded the opportunity to elaborate on the pain I was experiencing or to ask the crucial questions that lingered in my mind. The entire interaction felt rushed and impersonal, leaving me feeling neglected and unheard. After this disheartening encounter, I was sent to undergo an x-ray, which meant yet another waiting period filled with uncertainty and dread.

Finally, after what felt like an eternity, I was called back into the exam room. Once inside, the examiner told me that there were no fractures on the x-ray and to ice the affected area to help reduce any swelling and inflammation and take painkillers.

As I gathered my things to leave, I couldn't shake the feeling of disappointment. The entire visit was rushed, despite the many hours that had passed. I couldn't help but think that perhaps I should have just stayed home, resting and hoping the pain would eventually subside on its own. The thought of enduring the trip to the clinic, sitting in the waiting room, and undergoing the x-ray only to receive minimal guidance made me question whether the effort was worth it. I had hoped for a more comprehensive plan or at least some additional insights into managing my pain more effectively. Instead, I left with little more than a few instructions and a lingering sense of frustration, wishing I could have simply waited it out at home.

The Events Leading to the A&E Experiences

Before going to A&E and following the accidents, I went through a new experience: an autistic shutdown, which was both surprising and overwhelming. During this time, I found myself frozen in place, as if my body had become a statue, unresponsive to the world around me. My mind, which usually buzzes with thoughts and ideas, fell into a deep silent, and I struggled to communicate effectively. I had been muted, both literally and figuratively, rendering me unable to articulate my needs or feelings to those nearby. As I experienced this autistic shutdown, the world around me seemed to fade into a blur, becoming an indistinct backdrop.

Just before this point, sounds that were once normal became jarring, each noise amplifying the pain that had overtaken me. Lights seemed excessively bright, touch piercing through my skin, and even the air seemed dense with pressure. I could sense the chaos of the environment, yet I was trapped within my own mind, attempting to manage the overwhelming sensations flooding my senses. This battle against sensory overload was exhausting, and my calm and my usual coping strategies seemed to slip away, leaving shutdown as the only option.

The accidents that triggered this shutdown were the result of tripping and falling at home, or perhaps more accurately, a builder's experiment gone completely wrong. While this might appear minor to others, it had an intense impact on my psyche. After the falls, the physical pain was initially overshadowed by the emotional and sensory repercussions. The abruptness of the accidents caught me off guard, and their impact echoed in my mind long after I regained my composure. What might have appeared as a simple fall to an onlooker felt like a devastating event for me, shaking the very foundation of my stability.

My mind, which usually buzzes with thoughts and ideas, fell into a deep silent, as though I had been muted literally and figuratively.

In the moments following the fall, I was not just dealing with physical pain; I was grappling with a profound sense of vulnerability and fear. The autistic shutdown that ensued was a protective mechanism, a way for my brain to retreat and endure the overwhelming stimuli by seeking refuge in silence. This was a complex interplay of my body and mind responding to accidents that had triggered a cascade of emotional and sensory reactions that were anything but minor for me. I isolated myself in the darkness, withdrawing further into the silence of my room, hiding as much as possible until my body effectively shut down and entered survival mode.

This experience highlighted the intricate relationship between physical accidents and mental health, especially for individuals on the autism spectrum. It served as a reminder of how sensitive and reactive my system can be, and how critical it is to navigate these moments with care and understanding. The journey through this autistic shutdown was not just about recovering from the falls; it was about reclaiming my voice and sense of identity in a world that often overlook the struggles faced by others.

In the wake of the fall, I'm continuing to struggle deeply to process what had transpired. The shock of the experience left me feeling disoriented and confused, as if my mind was racing in circles, unable to grasp a clear understanding. A wave of self-criticism wash over me, a harsh internal dialogue that made me feel stupid for falling in the first place. I believe these unfamiliar emotions are embarrassment and humiliation, which seem foreign to me.

I isolated in the darkness, withdrawing further into the silence, hiding as much as possible until my body effectively shut down and entered survival mode.

As I struggled with these emotions, I realised that I was not only dealing with the physical consequences of the fall but also the psychological aftermath. I found myself retreating inward, wanting to push these feelings away, hoping that by doing so, I could avoid the discomfort and pain they caused. My instinct was to overcome the experience by shoving it down so deeply that it would eventually pass through me without leaving a trace, allowing me to move on without confronting the reality of what had happened.

However, I soon realised that this approach wasn't sustainable, as the hazards, defects, and unfinished work continued to loom over me everyday. The physical, emotional and psychological impacts of the accidents lingered, casting a shadow over my thoughts and actions. It became evident that I was having difficulty processing and overcoming the accidents. Each time I was undermined, I attempted to downplay the accidents as something trivial, but the feelings of shame and embarrassment would resurface, reminding me that I hadn't truly dealt with the situation.

During moments of reflection, I understood that my struggle wasn't just about the physical act of falling, but also about the broader implications of how accidents, especially at home, affect my sense of identity and my ability to engage with the world. The fear of judgment from others, anxiety over being seen as weak, and the internal conflict of aligning my experiences with medical norms all added layers to the complexity of my recovery. I wanted to find a way to articulate these emotions, yet the thought of discussing them felt daunting.

Ultimately, I realised that acknowledging my feelings and giving myself the space to process the accidents was crucial for healing. It was important to confront the emotions directly rather than burying them, as painful as that might be. This path toward acceptance and understanding is ongoing, and while I still struggle with the remnants of the accidents, I am learning to navigate my feelings with more compassion and patience for myself. As a society, we also need to offer autism-friendly healthcare.

The Importance of Autism-Friendly Healthcare

As a society, we must provide autism-friendly healthcare. This is not just an aspiration; it is a crucial to ensure that autistic individuals receive the comprehensive, compassionate, and effective medical care.

Healthcare facilities must address sensory challenges when designing their spaces. This could involve creating quiet waiting areas, using soft lighting, and minimising background noise to make visits less stressful for autistic patients.

Additionally, healthcare providers must undergo specialised training to understand the behavioural and communication needs of autistic patients. This training should include strategies for effective communication, recognising non-verbal cues, and practicing patience and empathy during interactions, ensuring autistic patients feel safe, heard, informed and understood.

By prioritising these elements, we can create a healthcare system that not only meets the medical needs of autistic individuals but also respects basic human dignity and promotes overall wellbeing. As we aim for a more inclusive society, it is imperative that we recognise the importance of autism-friendly healthcare and take actionable steps to implement it across all medical settings.