Is GP Healthcare Available for Autistic Adults?

Is GP Healthcare Only Good as a Concept?

The question of whether general practitioner (GP) healthcare is merely a theoretical ideal or if it is genuinely failing autistic individuals, like myself, is a deeply troubling one. It raises significant concerns about the accessibility and quality of healthcare for marginalised groups. My personal experience with public healthcare has been limited, as I've been fortunate enough to maintain good health throughout most of my life. However, this streak of good fortunate came to an abrupt end when I sustained injuries at home due to unfinished and dangerous construction work left by builders.

These accidents, occurring in what I had always considered my safe bubble, were not only shocking but also deeply distressing. The trauma of being injured in my own home was intensified by my interactions with medical professionals who, rather than providing the compassionate care I desperately needed, seemed to lack the ability to truly listen to my experiences and acknowledge my pain. Instead of receiving the empathy and understanding that one would hope for in such trying circumstances, I encountered a dismissive attitude that undermined my suffering. The treatment I have received thus far has left me feeling like my pain was trivialised, as if I were a burden to the healthcare system rather than a patient deserving of care and attention.

This lack of compassion and understanding from healthcare providers has led me to experience feelings of self-doubt and confusion. I find myself questioning what I might have done to deserve such treatment. After all, I've rarely needed help from medical professionals in the past and have made a conscious effort not to misuse resources within the healthcare system or public system overall. My commitment to public healthcare has always been serious; I believe in its importance and value. Therefore, it is disheartening to consider why, when I finally find myself in need of help, the response is one that makes me feel unwelcome and as though I am wasting their time.

The sense of being marginalised within the healthcare system is particularly pronounced for autistic individuals of colour, who may already encounter additional barriers in different communication styles and a lack of understanding from others. It is troubling to think that the very system designed to provide care and support can intensify feelings of isolation and frustration. In situations where I should have felt supported, I've instead been met with an environment that seems hostile and unwelcoming. In light of these experiences, I often find myself retreating into my inner world, finding comfort in my own thoughts and feelings as a way to cope with the persistent pain. The idea of waiting for the pain to simply disappear on its own becomes a tempting escape, as it feels safer than confronting a system that has, in my view, failed to deliver on its promise of care.

The question remains: what can be done to ensure that individuals like myself receive the compassionate and understanding healthcare we need? How can we bridge the gap between the ideals of public healthcare and the realities faced by those who rely on it? These are critical questions that demand attention and action, as the wellbeing of many individuals hangs in the balance.

An Autistic Adult's Personal Experience with GP Healthcare

It's not that I'm expecting medical professionals to be able to magically fix me, or that I'm expecting a magic potion; it's actually just simple acknowledgment I'm seeking during these difficult experiences and what I've been through and still continue to endure. With all these new sensations that feel completely alien to me, the ordeal of injury is already debilitating. Each day presents a fresh set of challenges, both physical and emotional. When you add the layer of being undermined by medical professionals or feeling completely unheard, the situation becomes even more overwhelming. This is when the only thing left to do is to go completely inward, retreating back into a black hole of despair, wishing that my injuries would simply fix themselves without the need for external intervention.

As I navigated the complex healthcare system in search of relief and support, the treatment I received frequently felt dismissive and undermining. Rather than validating my pain and offering appropriate care tailored to my specific needs, I was left with the uncomfortable impression that I was merely wasting their time. It was as if my struggles were an inconvenience, a burden they were reluctant to handle. I was passed between doctors and nurses without any explanation, then to physiotherapists, and back to doctors and therapists. Each had their own method of evading responsibility and denying me the help I needed for recovery. For instance, during consultations, doctors and nurses often paid little attention to the physical symptoms I exhibited following my falls, swiftly diagnosing or prescribing serious medication without actually assessing my symptoms or understanding the problem. They appeared more interested in questioning my autism diagnosis and expressing frustration over not receiving any paperwork related to it. I was caught off guard by the expectation that I should be responsible for their administrative tasks, as if I were supposed to arrive at the appointment armed with a complete database of my medical history and symptoms. The appointments were consumed by discussions of a label, and then I was told that my time was up. This added another layer of stress to an already taxing situation.

I also encountered a particularly distressing experience with a physiotherapist who pulled on my injured body and laughed when I pointed out a visible deformity after my fall. They also told me how weak I was, questioned why I couldn't move normally, and mentioned a referral without explaining its purpose, which I only discovered when I receive a letter from MSK. This leads to the question: What is MSK? This encounter was very demoralising and shame-inducing, making me feel bad about being injured and causing me to doubt my strength and abilities. It took a long time to remind myself that I've always been strong for my size and shouldn't let such uncompassionate remarks affect me. Another physiotherapist entirely dismissing my pain, forcing me into positions without my consent that worsened it, leading to months of recovery from that appointment alone. These treatments were not only damaging but also deeply invalidating, causing me to question the legitimacy of my worries and the reality of my experiences. It seemed that the medical professionals I encountered had little time for me, treating my needs as an inconvenience rather than a priority deserving of attention and empathy. This pervasive sense of neglect and dismissal led to feelings of gaslighting, where my perceptions of pain and distress were systematically questioned. The resulting self-doubt was both confusing and painful, as it is so unlike me, leaving me to struggle with the fear that I might be overreacting or misinterpreting my own body’s signals or the hazardous areas in my home that I still avoid looking at or entering to this day. I have to somehow remind myself how attuned I am to my own body, so that I can ignore these dismissive treatments and find a way to recover.

In this environment, the path to recovery turned into both a physical and emotional battle, without any armour, as I fight to reclaim control and validate my experiences amidst a chorus of dismissive voices. The challenge of preventing these medical professionals from retraumatising me is testing, especially after months of dealing with dismissive builders when we raised safety concerns repeatedly, consistently being told these issues aren't priorities, as if we have no rights in our own home. And now, it appears as if I have no right to receive the care necessary for my recovery.

Can We Have Effective Healthcare for Autistic Adults?

The gap between my trust in healthcare and the reality of my experiences raises critical questions about the efficacy of GP healthcare for autistic adults. If the system is designed to provide support and care, why does it foster an environment where patients feel unwelcome or as though they are wasting the time of the very professionals who are meant to assist them? This sense of alienation can be particularly pronounced for autistic individuals, who may already struggle with societal misunderstandings and stigma. The implications of such experiences extend beyond individual encounters; they speak to a broader systemic issue that can leave vulnerable populations, particularly neurodiverse individuals, feeling isolated and misunderstood within the healthcare framework. It is alarming to consider how the very structure that is supposed to provide aid can inadvertently strip away basic human rights, especially when healthcare professionals may not fully appreciate or recognise the different ways in which we express pain or suffering. The nuances of our experiences can often be overlooked, leading to a lack of appropriate responses to our health needs.

Additionally, this situation prompts a deeper examination of how healthcare systems can better accommodate the unique needs of autistic individuals. It is essential for medical professionals to cultivate a more compassionate and attentive approach, ensuring that all patients feel heard and valued. This requires a shift in the culture of healthcare, moving away from a one-size-fits-all model towards a more individualised understanding of patient needs. The importance of training healthcare workers in understanding the unique experiences of autistic individuals cannot be overstated, as it can significantly impact the quality of care provided and the overall patient experience. Such training should encompass not only the clinical aspects of autism but also the emotional and psychological dimensions, fostering empathy and understanding that can bridge the gap between healthcare providers and patients.

Understanding Autism-Friendly Language in Healthcare

Healthcare professionals must start using autism-friendly language to create a more inclusive and respectful environment for autistic individuals. It is imperative that the terminology used does not perpetuate misunderstandings or stigma. Phrases such as "have autism", "disorder", and "mental health condition" can be undignified and reductive, implying that autism is something separate from the individual, like a disease or disorder that requires curing. In contrast, we view autism as an integral part of our identity, one that shapes our experiences and perspectives in deep and meaningful ways.

The Importance of Steering Clear of Assumptions

Using language that reflects this understanding is crucial. When healthcare providers make assumptions about an autistic person's needs or desires, it can lead to feelings of frustration and alienation. This will only drive us away from receiving the care and support we need. Recognising that our autistic identity is unique, with distinct preferences, abilities, and challenges, is essential. Therefore, healthcare professionals must engage in open dialogues, ask relevant questions, and avoid generic approaches, allowing autistic individuals like us to express our thoughts and feelings without being subjected to preconceived notions or stereotypes.

Intuition and Self-Awareness

For many autistic individuals, receiving a diagnosis can be a complex experience or simply another Tuesday. Contrary to the assumption that a diagnosis is often a revelation, many of us have been aware of our differences from a very young age. We possess a profound intuition about our identities and how we interact with the world around us. This self-awareness is something that a label can't offer to us, although it often serves us, it can sometimes lead to feelings of isolation or misunderstanding, particularly in environments that fail to acknowledge or validate our experiences.

Experiences of Late Diagnosis

As a late-diagnosed autistic woman, I can attest to the nuanced implications of receiving such a label. For me, the diagnosis serves primarily as a formal acknowledgment of what I have always known about myself. However, it doesn't fundamentally alter my identity or how I navigate the world. Instead, it often introduces a range of challenges, including unfair treatment and stigma from medical professionals who may not fully understand autism or the diverse ways it can manifest.

Labels and Identity

It is crucial to emphasise that a label is just that—a label. It doesn't fully define us as individuals. Our unique identities are shaped by a myriad of factors beyond our neurodivergence, including our experiences, interests, culture and the relationships we cultivate. Thus, while a diagnosis may provide some clarity, it shouldn't overshadow the complex fibres of our identities.

Moving Towards Acceptance

The shift towards adopting autism-friendly language goes beyond politeness; it is a vital step in acknowledging and respecting the identities of autistic individuals. By fostering an environment that values our voices and experiences, healthcare professionals can contribute to a more fair and empathetic society. It is time to embrace the diversity that autism offers and celebrate the strengths and perspectives of our identity, instead of seeing us through a lens of limitation or deficiency.

While the concept of GP healthcare is undoubtedly valuable, its execution often falls short, particularly for those of us navigating a complex system that is not fit for our neurodiversity. It is imperative that we advocate for a healthcare system that prioritises respect, empathy, understanding, and personalised care, ensuring that no one feels like a burden when seeking the help they desperately need. This advocacy must be a collective effort, involving healthcare professionals, policymakers, community leaders, and society as a whole. The path toward a more inclusive and compassionate healthcare environment is ongoing and demands commitment from all stakeholders. We are not burdens or inconveniences; we deserve care and support like everyone else. Our voices must be amplified, and our needs must be met with the dignity and respect every individual deserves. Only then can we hope to create a healthcare system that truly serves all members of society, recognising and celebrating the diversity of human experience.