Good vs. Bad Physiotherapy: Understanding the Unique Needs of Autistic Patients

It was only after my injury that I truly learned physiotherapy isn't created equal, realising it shouldn't be a one-size-fits-all approach. During a time when I desperately needed effective recovery strategies to improve my daily mobility and alleviate the relentless pain I was enduring, I became acutely aware that the physiotherapy space doesn't sufficiently accommodate autistic individuals. This oversight of our unique needs significantly impact our recovery journey.

Understanding the Unique Needs of Autistic Patients in Physiotherapy

Let’s start with the ideal scenario: physiotherapy is widely regarded as one of the most physically engaging treatments available for patients suffering from various injuries. It involves a range of hands-on techniques that aim to restore function, improve mobility, and reduce pain. What this means for autistic patients is that there is a lot of physical contact that we naturally want or need to avoid for the sake of our sensory experience. This also means that the manhandling approach presents unnecessary challenges for us.

For many in the allistic community, the physical contact involved in physiotherapy may appear trivial, but for autistic individuals, it's always significant. Like me, many autistic individuals experience heightened sensory sensitivity or even sensory overload, particularly in the context of our injury. This makes standard physiotherapy practices feel overwhelming or distressing. This complexity necessitates a more nuanced approach to care, one that goes beyond conventional practices to meet the unique needs of autistic individuals.

The Challenge of Sensory Sensitivity

Understanding this sensory aspect is crucial. For many autistic individuals, physical touch is not just a sensation; it becomes an intense emotional experience that triggers anxiety or discomfort, especially in the context of an injury, where the body is already under stress and experiencing pain. As a result, the typical hands-on methods employed in physiotherapy, which often involve manual manipulation and physical guidance, can inadvertently exacerbate the pain already present from the injury. The challenge is to find a balance between necessary physical interventions and the patient's emotional and sensory needs. As a physiotherapist, you should start by considering what you can offer based on your patients' sensory needs, rather than immediately opting for a hands-on approach.

Creative and Thoughtful Approaches to Care

Considering these factors, it becomes imperative for physiotherapists to adopt more creative and thoughtful care strategies during both assessments and treatment sessions. This means that standard practices need to be modified to ensure that our conditions are not exacerbated by the very treatments that are meant to aid in our recovery. This approach may include developing personalised treatment plans that consider the patient's sensory profile, preferences, and comfort levels.

For instance, physiotherapists could explore alternative methods such as visual or auditory cues to guide movements, or they might integrate mindfulness techniques to help manage anxiety during sessions. They could also communicate directly with patients beforehand to set expectations for each session. This approach enables us to prepare for the session, which in itself reduces unnecessary stress or anxiety and encourages a therapeutic environment that is not only effective but also respectful of the patient's unique sensory experiences.

The Importance of Professionalism and Sensitivity

Unfortunately, not all physiotherapists are equipped with the knowledge or skills to deliver this level of care. Many autistic patients, including myself, have encountered practitioners who, whether through lack of training, awareness, or willingness to care, have used methods that are unprofessional and insensitive. Without this level of consideration and understanding, the risk is significant that we not only fail to recover but could also deteriorate further. Such experiences erode trust in the healthcare system, making it even more difficult for autistic patients to engage with necessary treatments. This is particularly concerning, as a negative experience undermines confidence in the entire recovery process, leading to further physical and emotional decline.

Personal Experience: Navigating the World of Physiotherapy

Since my fall injury, I've endured a series of physiotherapy assessments and sessions in an effort to regain my mobility and alleviate the pain that has become a constant companion in my life. Unfortunately, this journey has not been without its challenges. I encountered some shocking treatments from physiotherapists and doctors that were both unprofessional and insensitive to my specific needs as an autistic person. These experiences left me feeling more vulnerable and disheartened, as the approaches exacerbated my condition instead of alleviating it.

For instance, there were occasions when physiotherapists used aggressive techniques that ignored my pain and comfort, leading to increased anxiety and physical discomfort. I didn't anticipate physiotherapists to lack the basic listening skills necessary to recognise my severe pain, nor did I expect them to need to yank me roughly to evaluate the injury. This insensitivity to pain, especially for someone who experiences it regularly, was quite shocking and detrimental for patients enduring the pain and sensory sensitivities. This lack of awareness of pain and sensory sensitivity not only undermines the therapeutic process but also contributes to a growing mistrust in healthcare professionals. Due to these negative experiences, I found myself losing faith in their ability to provide the support I desperately needed for my recovery.

This is why I believe we should address this topic to promote better outcomes for autistic patients who require a healthcare system that truly prioritises our needs, rather than just as an afterthought.

Advocating for Change in Physiotherapy Practices

This brings us to the crux of the matter: it's crucial to discuss and advocate for better practices within the physiotherapy field that genuinely prioritise the needs of autistic patients. There is a pressing need for a healthcare system that not only acknowledges but also actively addresses the unique challenges faced by autistic individuals. We should not be overlooked in a system that is supposed to support our healing and recovery.

This involves actively identifying the needs of autistic patients and providing sensitivity training for physiotherapists and other healthcare professionals to address the specific requirements and care strategies for autistic individuals. By adopting a mindset that recognises autistic patients require more than generic approaches, our experience can be greatly improved. It's important to keep in mind that we may not express pain in the same way as allistic individuals; just because our pain isn't visible on our faces or we're not vocalising it doesn't mean we don't feel it. Additionally, preparing a list of questions about sensory experiences could facilitate communication about our pain, leading to mutual understanding rather than assumptions based on surface observations.

By encouraging an environment of understanding and respect, medical professionals can enhance the quality of care and improve outcomes for us as autistic patients recovering from injuries. Raising awareness of these issues can motivate physiotherapists to develop more inclusive practices that consider sensory sensitivities and the diverse needs of autistic patients like us who are just seeking a way to get better. This might involve implementing strategies such as using clear communication, offering choices during treatments, and creating a calming environment to minimize sensory overload. The goal should be to establish a setting where we feel safe, respected, and empowered throughout our recovery process.

Navigating physiotherapy can be challenging for us as autistic individuals, especially when typical practices overlook our unique needs. By promoting a more compassionate and informed approach to treatment, we can ensure that we receive the care we deserve as autistic patients, leading to better health outcomes and restored confidence in our treatment pathways. Having personally faced the difficulties of physiotherapy after multiple injuries, I believe it is vital to raise awareness of these issues and advocate for a system that is responsive to the needs of all patients, especially marginalised populations.

Good vs. Bad Physiotherapy Practices

Just need to be blunt here: if you have no interest in understanding your patients or acknowledging the struggles that we're going through, you should absolutely change professions today. Not tomorrow, seriously, now is the perfect time to make that decision, so no more patients have to suffer from such disrespect and a complete lack of compassion when we need your help the most. It's important for healthcare professionals, particularly physiotherapists, to recognise the profound impact their attitudes and practices can have on patients' recovery journeys.

I will briefly outline what I believe distinguishes good physiotherapy practices from bad ones, so we have a clear gauge of what to anticipate and what we should insist on if we aren't receiving adequate care.

Characteristics of Bad Physiotherapy

Bad physiotherapy practice is marked by a failure to acknowledge our pain and a tendency to predetermine diagnoses without engaging in active listening. This lack of engagement can lead to a disheartening experience, leaving autistic patients feeling overlooked and misunderstood. They may also undermine our injuries, dismiss our struggles, and make us feel as though we're overreacting to our pain. In such situations, it's crucial to demand better care, whether by clearly stating that they are not alleviating our pain and are, in fact, worsening it, asking for a more experienced physiotherapist, or requesting a referral to a specialist.

By asserting our need to be heard, we can reclaim control and feel empowered to make decisions about our treatment methods, even if these medical professionals do not offer this openly and transparently. Furthermore, inadequate physiotherapy frequently involves unwarranted physical manipulation, where therapists may handle patients aggressively without consent or consideration for less invasive assessment methods. This not only causes discomfort but can also exacerbate the very issues we seek help for.

Additionally, they might deploy a set of generic questions unrelated to our injury or hurry us to finish because we're not responding as they wish, allowing them to note their assumptions instead of the actual events. They hand you a sheet of exercises without any explanation or demonstration and expect you to heal miraculously at home, with no follow-up sessions. It's troubling when physiotherapists lack awareness of the diverse needs of their patients. Each autistic individual has unique circumstances and backgrounds, and a one-size-fits-all approach is inadequate. A good physiotherapist should be committed to providing personalised care that considers the different factors influencing each patient’s recovery.

Characteristics of Good Physiotherapy

Conversely, good physiotherapy should be defined by a comprehensive, empathetic, and thoughtful approach that focuses on the patient's personal experience. Physiotherapists should make a concerted effort to listen to the patient's account without forming premature conclusions. A skilled physiotherapist should be able to diagnose symptoms accurately by evaluating patients with minimal physical contact. This can be achieved through techniques that allow the therapist to guide us gently, enabling us to demonstrate our movements in a feasible manner. This approach not only respects our personal space but also aids the therapist in understanding our limitations and pain levels more accurately. It should be checked if we have multiple areas of injury, allowing the therapist to be considerate of assessment techniques, recovery plans, and movement limitations.

Furthermore, they need to be skilled at recognising the level of pain we're experiencing. Pain is an intensely personal experience, and it's vital for physiotherapists to understand that our feelings cannot be invalidated. If you attempt to dismiss our experience, it might be best to give up this profession, as you could be undermining its core purpose. By simply acknowledging our pain and validating our experiences, they encourages a trusting relationship crucial for effective treatment. They should be able to outline a clear treatment plan, including expectations, session details, and contingencies if the plan doesn't work. Additionally, they should be equipped to ease our concerns about the injury by offering clear explanations of the diagnosis, treatment plans, recovery timelines, and educational resources that empower us to better understand our conditions.

Personal Reflections on Physiotherapy Experiences

Reflecting on my experiences, the physiotherapists I encountered definitely did not offer the level of care or detail I needed most. Their approach left me feeling ignored, frustrated, disheartened, and in more pain than before the appointment. When physiotherapists evaluate my condition, it'd have been far more helpful if they had considered my specific needs. For instance, when asked, "How is this affecting you?" the question was too broad, prompting me to ask clarifying questions to work out the real enquiry, which is, "What can I not do?" Unfortunately, they didn't appreciate it when I asked questions in return. As an autistic person, I prefer not to deal with broad, ambiguous questions, especially while managing both injury and autistic burnout.

Thinking about the activities I'm no longer able to participate in due to my injury brings a wave of emotions that can be overwhelming, often leaving me feeling choked up and struggling to breathe. This reflection painfully reminds me of the helplessness I've been experiencing during this challenging period, where each day seems to drag on endlessly, filled with reminders of my limitations. Simply recalling the things I once enjoyed—like going for a walk, seeing family and friends, or enjoying a quiet moment with a book—evokes a deep sense of loss. This emotional turmoil is intensified by the expectations of others, who may not fully grasp the extent of my struggle. I find it difficult to articulate the list of activities I'm unable to do, which they expect from me, because the weight of my reality feels too heavy to share.

Instead of quickly moving on, as might be expected, the situation calls for a deeper understanding. It's crucial to recognise that when autistic patients don't respond in the same way as allistic individuals might, there is often a reason behind our silence. We might need more time to process our feelings or a different way of communicating about such a deeply personal issue. It’s important to stop and consider that many patients may be struggling with basic tasks—like brushing teeth, putting on our socks, or even wiping after using the toilet. These seemingly simple actions can become monumental challenges in the face of injury, leading to feelings of frustration and inadequacy.

I experienced an intense feeling of shame when confronted with my inability to perform basic daily tasks. Just the idea of admitting my struggles would bring tears to my eyes, which is unusual for me; I rarely cry unless the blue moon is out. Yet, during this period of injury, compounded by the experience of autistic burnout, I discovered that even the simplest questions could unleash a flood of emotions. This emotional response isn't just about the physical limitations I encountered, but also about the internal battle with my self-worth and identity.

Why Do Standard Pain Scales Fail Autistic Patients?

Simply because it makes little sense. Pain, being a subjective experience, is known for its inconsistency and can fluctuate significantly from one moment to the next. This fluctuation is influenced by numerous factors, complicating our understanding of it. For instance, the particular body part involved is crucial; pain in a joint may differ from that in a muscle or an organ. Additionally, the existence of other injuries can intensify or alter the perception of pain, resulting in a complex interaction that is challenging to untangle.

The time of day can affect pain levels, with some autistic individuals experiencing heightened discomfort during certain hours, possibly due to natural circadian rhythms or daily activities. The type of movement we perform can further impact our pain experience; for instance, a simple stretch of the torso might provoke sharp pain in one person, while another might not feel any discomfort. Moreover, the amount and quality of sleep we get can greatly impact our perception of pain; lack of restorative sleep often leads to increased sensitivity to pain.

Other factors, such as the level of pressure being applied to an injury, can also modify our pain experience. A light touch might be tolerable in some cases, while the same touch could be excruciating for someone else, depending on our unique pain thresholds and psychological state. Our mood plays a significant role as well; anxiety or depression can amplify the sensation of pain, whereas a positive mood might reduce it.

The attempt to quantify pain using numerical scales presents its own set of challenges. Pain scales, which typically ask individuals to rate discomfort from zero to ten, are inherently limited. Pain is not a consistent experience that can be simply reduced to a single, often arbitrary number. This binary approach fails to account for the subjective nature of pain. In reality, it might be more accurate to view pain as a spectrum that includes decimals and fractions, capturing the nuanced and often fluctuating nature of our sensations.

When it comes to seeking help, such as from physiotherapists, the complexity of pain can lead to frustration. Healthcare providers aim to provide effective treatment and often need clear, quantifiable data to guide their decisions. This requirement can lead to a rush to categorize pain into specific parameters, which may not fully capture an autistic person's experience. Thus, as autistic patients, we feel hurried out the door, with our detailed descriptions of pain overshadowed by the demand for straightforward answers that fit within a clinical framework. The reality is that pain is a complex network composed of physical, emotional, and situational elements, and reducing it to mere numbers may do a disservice to those who endure it.

My Animal Kingdom of Pain

To further illustrate the complexity of pain, I've devised a personal method to understand my own injuries by assigning an animal to each body part affected by pain. For instance, I might associate a tiger with my back pain, symbolising the intense and overpowering nature of the discomfort in that area. In contrast, I might choose a more timid creature, like a rabbit, to represent the ache in my ankle, which feels less severe and more manageable. This imaginative approach allows me to conceptualise my pain in a way that goes beyond mere numbers, offering a more vivid and relatable understanding of the sensations I experience. By visualising my pain through these animal metaphors, I can better communicate the severity and quality of my discomfort. However, the healthcare providers I've encountered haven't given me the opportunity to share this method to help them grasp the intricacies of my situation in a more meaningful way. Here's a glimpse of my personal method that transforms my injuries into a wild zoo of animal metaphors:

The Tiger's Roar: Back Pain

First up, my back pain. I compare it to a tiger—majestic, powerful, and definitely not something you want to mess with. When it strikes, it feels like I’m being hunted by a fierce predator, and every movement reminds me that I’m not the queen of the jungle, but rather the queen of "Please don’t make me bend over."

The Gentle Rabbit: Ankle Aches

On the flip side, my ankle pain is represented by a rabbit. Cute, fluffy, and definitely less intimidating than a tiger. When my ankle hurts, it’s more like a rabbit nibbling at my patience rather than a full-on attack. I can still move around—well, sort of—but I might look more like a tipsy bunny on a rough day!

The Crocodile of Shoulder Pain

Ah, the infamous crocodile hiding in the waters of my shoulder! This metaphorical beast represents the complex nature of my shoulder pain, much like a crocodile lurking beneath the surface, waiting for the perfect moment to snap at my sanity. You think you’re just reaching for a glass of water, but bam! The crocodile strikes, and suddenly I'm questioning my life choices. It’s like having a pet crocodile I never wanted—one that constantly reminds me that lifting anything heavier than a remote control is out of the question.

The Sloth of Hip Pain

Then there's my hip pain, which I’ve decided is best represented by a sloth. Slow-moving and a little bit lazy, it hangs around and reminds me that walking anywhere is simply not an option today. It's as if my hip is saying, "Why rush? Let’s take our time and savour the pain!"

The Squirrel of Headaches

And how could I forget my headaches? This new companion, which I had successfully avoided my entire life until my injury, now arrives with malice. They’re like a hyperactive squirrel, darting around in my brain, constantly chattering, and throwing acorns of discomfort at my temples. One minute I’m fine, and the next, I’m dodging the chaos of a squirrel rave in my head.

Communicating with Healthcare Providers

Using this imaginative approach enables me to conceptualise my pain beyond just numbers. Describing my back pain as a tiger—since no one wants to wrestle a tiger—makes sense to me, even if it doesn't to medical providers. When I refer to my ankle pain as a rabbit, it brings a smile amidst the pain, yet it still needs attention. By using these animal metaphors to visualise my pain, I can effectively convey the intensity and nature of my discomfort. Plus, if healthcare providers adopt this approach, it would offer them a refreshing alternative to the typical "on a scale of 1 to 10" routine. Who wouldn’t want to discuss the wild queendom of pain instead? It’s way more engaging than just saying "it hurts!"

While numerical pain scales serve a purpose in clinical assessments, they are limited in their ability to encapsulate the full experience of pain, especially for autistic patients. Recognising pain as a spectrum and employing creative methods to articulate it can lead to a more in-depth insight into this complex experience.

How Physiotherapists Can Improve Outcomes?

It's imperative for physiotherapists and other healthcare professionals to be equipped with the skills to recognise the diverse ways autistic patients express pain, which may differ from allistic individuals but are equally valid. Some expressions of pain to consider include:

• Slow response time

• Holding the jaw

• Subtle touching, stroking, or holding certain body parts

• Leaning on objects for support

• Eyes closed tightly

• Repetitive actions or stimming

• Quietness

• Emotional or stress-related reactions

• Unusual positioning to ease discomfort

• Guarding or withdrawing behaviour

• Nausea or vomiting

• Rigid or motionless posture

Talking about pain is not straightforward, and when healthcare professionals approach it with a fixed idea of how pain should appear or be expressed, it creates an unsafe environment for autistic patients. This leads to inaccurate assessments and creates distrust. This dialogue is one of the most critical for addressing injuries, and as patients, we need sufficient time beforehand, rather than being subjected to a barrage of questions that compel us to engage in autistic masking to hide our true feelings. This conversation should occur before the initial physical evaluation.

Words Matter—Like a Lot!

The language employed in physiotherapy care for autistic patients is crucial for creating an inclusive and supportive atmosphere. The choice of words can greatly influence the therapeutic relationship and the patient's overall experience. It's vital to steer clear of insensitive and discriminatory terms, as such language can lead to feelings of alienation and distress among autistic individuals.

When healthcare professionals refer to our identity, they must ask how we would prefer to be described. Our preferences must be prioritised over textbook or medical research suggestions. For instance, I prefer "autistic person" over "person with autism," "neurodiverse" instead of "have autism," and "autistic" rather than "autism spectrum disorder." This approach promotes dignity and respect. Such subtle shifts in language emphasise the individuality of the patient, reminding healthcare professionals that their patients are complex individuals with unique experiences, rather than being solely defined by a diagnosis.

Furthermore, employing derogatory or outdated terms can perpetuate negative stereotypes and reinforce societal stigma surrounding autism. This not only creates an unsafe environment for autistic patients but also perpetuates widespread misconceptions about autism in society. When healthcare providers use dismissive or derogatory language, it erodes our trust as patients, resulting in disengagement from necessary care and support services.

Using suitable language can enhance patients' comfort and safety, leading to better outcomes in physiotherapy. When we feel respected and understood, we're more inclined to actively participate in our treatment plans, follow therapeutic exercises, and openly discuss our needs and concerns with our therapists. This collaborative method empowers us and enables therapists to more effectively customise our interventions to address our individual specific needs.

The language employed in physiotherapy for autistic patients is more than just semantics; it significantly influences the therapeutic setting and the care experience. By intentionally choosing respectful and inclusive language, healthcare professionals can break down barriers, build positive relationships, and improve the quality of care for autistic individuals. This focus on mindful communication demonstrates a broader commitment to promoting equity and understanding within the healthcare system.

Mindfulness Meets Muscle Meets Do Better

Physiotherapists play a vital role in our healing process, not only by addressing our physical rehabilitation but also by providing the emotional support that is often just as necessary. Recognising that autistic patients may need a considerate and thoughtful approach, one that allows for vulnerability and open dialogue, unique pain descriptions, and sensory questions helps establish a therapeutic setting where recovery can truly begin. By acknowledging the emotional weight of these interactions, healthcare providers can ensure that all patients feel acknowledged and heard, facilitating a more holistic recovery process.

The role of a physiotherapist goes well beyond just physical treatment; it involves a holistic approach that considers and respects the physical, emotional, and psychological aspects of recovery. It's crucial for professionals in this field to prioritise empathy and understanding, ensuring that we feel valued and supported throughout our recovery process, regardless of our neurotype.

Have you ever encountered the pain scale? Was it effective for you? What unique methods do you have for describing pain? I'd be interested to hear all about them.