Navigating Healthcare: “What reasonable adjustments do you need?”
There have been times when I’ve been asked that question (or similar) and my response has been complete silence.
I haven’t always known what adjustments would help, and there was a time several years back when I didn’t know what a reasonable adjustment was. What might seem like a clear question to ask, in reality, has the potential to feel huge, vague and overwhelming.
This blog post is about navigating healthcare as a neurodivergent person, along with the role of reasonable adjustments, and the nuance around them. I’m writing at a time where positive changes are being made in healthcare, and yet, continual progress is needed.
What are reasonable adjustments?
Reasonable adjustments is a term that we can hear in many settings, including education, workplaces and across services like health and social care. “The Equality Act (2010) states all organisations including health and social care, such as hospitals and GP surgeries must take steps to remove the barriers individuals face because of disability” (NHS England, 2022).
As neurodivergent people, our individual views may vary on whether or not we identify as being disabled. However, depending on your experiences, you may meet the legal definition. Reasonable adjustments are those steps, or adjustments, which help reduce barriers and make services more accessible. For example, through changes to communication, environment, or processes.
An example of a reasonable adjustment that helps me in healthcare is being given clear written information to take away from appointments. This helps me to remember anything I need to do or put into my daily routines. Without this, I find it very difficult to translate information into day-to-day life. This example highlights how reasonable adjustments can be small changes, yet, they have the potential to make a huge difference.
This is one example. As neurodivergent people, our experiences are vast and varied and reasonable adjustments are very individual.
We aren’t given a manual
Like many, I grew up very aware I felt different but completely unaware why. I didn’t understand or know how to communicate the way I was experiencing the world. It wasn’t until back in my 20s that I finally had (some) of the language to begin to make sense of my experiences. I’m an Autistic ADHDer.
Yet, those diagnoses didn’t come with a ‘manual for life.’ I wasn’t given a list of all the things that would help with my areas of support needs or a list of reasonable adjustments for work and wider life. Both diagnoses became the beginning of a long road of figuring things out.
As neurodivergent people we are all at different stages of this process. My experience is that it's a lifelong learning process. It takes a lot of trial and error, and can often require a huge amount of patience and self-compassion.
Our needs can fluctuate
It isn’t as straightforward as knowing what a reasonable adjustment is and figuring out what could help us. Our individual needs can also fluctuate and change over time, influenced by age, context, and many other factors. This may mean the reasonable adjustments that help us might alter.
For people I disclose my support needs to, I appreciate the challenge of that unpredictability; I feel that unpredictability myself. Until I truly understood why, and how, my experiences fluctuate, I found my daily experiences baffling.
An example I often share is this: a big part of my work is as a trainer. On the surface, it might be assumed I have no difficulties communicating. There have been times where I’ve shared some of my struggles and it’s been met with, ‘…but you’re so articulate.’ What may be a well-meaning comment, overlooks and dismisses the very real challenges I experience.
There are times when I reach extreme overwhelm, particularly during times of illness, and I experience situational mutism. Where, not by choice, no words can leave my mouth, where I’m unable to express what’s in my mind or what I’m experiencing. Or it might be that I can express some words, but I’m unable to respond to conventional healthcare measures like 1 to 10 pain scales, or broad questions like, ‘how are you feeling?’
My communication style and experiences are diverse. Even in this one area, understanding and making adjustments requires curiosity and flexibility from healthcare staff.
Asking for reasonable adjustments
One of the most important things I’ve learnt is that I don’t need to have all the answers to ask for reasonable adjustments. Whilst I find it empowering to self-advocate, I find it validating when someone is able to support me to figure out what might help. It feels a relief to share the load.
My own journey through healthcare continues to be a rollercoaster, but one that is beginning to level out. There are experiences that still shake my trust completely, yet others where my experience is the complete opposite. When clinicians or services adapt in such a thoughtful and seamless way, I leave with renewed hope and feeling empowered. But that mix of fear, uncertainty and possibility means most appointments or interactions start with a familiar trepidation. I brace myself, unsure which version of the system I’m about to meet.
Regardless of whether we’ve had good or bad past experiences, it isn’t always easy to disclose and ask for the changes that could help. In reality, how easy is it to ask for reasonable adjustments when accessing healthcare? Imagine an appointment letter arrives. Is the only way to ask for reasonable adjustments to pick up the telephone? If so, that’s already a potential barrier.
Reducing the weight of self-advocacy
Whilst I’ve experienced barriers to asking for reasonable adjustments, a tool that I personally find helpful is having a health passport. Yet, having this completed isn’t what makes it useful, it’s how it is used. During a recent healthcare interaction, I was invited to share my health passport. The person took time to read it, but what they said next was equally powerful. They simply encouraged me to let them know if there was anything that they were doing, or any ways in which they were communicating, that were unclear or unhelpful.
This may not sound a lot, and yet it was. It reduced the load of self-advocacy. There are countless times I have struggled to ask someone if they could slow down, or repeat something, or write the information down to support my processing. It can be exhausting.
I see the positive shifts in healthcare
In the not-too-distant past, after reaching sensory overload from a chaotic A & E waiting room, a family member asked if there was a calmer space that I could wait. The response was quick, clear and final, “no, wait outside.” It was late, dark and raining. I felt the sting of exclusion, that I didn’t belong. It was a painful experience, and for quite some time after, I became hesitant to ask for adjustments. It went on to impact how I accessed healthcare (or not.)
I’m sharing this moment not to blame, but to show why this conversation matters. I recognise healthcare professionals are often navigating impossible pressures and limited resources. And at the same time, I also know I’m not alone in facing inequity when trying to access healthcare. I hear countless stories from other neurodivergent people, experiences shaped not by ill intent, but by a system not yet designed with us in mind.
Fast forward a couple of years, and I was faced with a parallel situation. Reluctantly, I took a leap of faith to return, preparing for the same situation. Yet, this time, as I navigated A & E, my experience couldn’t have been so different. I was offered a quieter space to wait, and along with some additional small changes, the experience was far less overwhelming. It meant I was in a better position to communicate and build a shared understanding of the situation. It felt human. I felt welcomed. It was validating.
I left that situation knowing that if I ever needed to access emergency care again, I could. Yes, the practical changes supported equitable access to healthcare. However, every time my experiences were validated, or people took a little extra time to understand, or a small change was made, it built trust. I share this as an example of hope.
Summary
What is it we really need from healthcare professionals? We will all have our own answer to that question. I would ask for greater curiosity, taking more time to listen and to understand the diversity of our individual experiences, creating safe environments to ask for support, taking a flexible approach to reasonable adjustments, and not relying on us to have all the answers.
When I reflect on the changes being made in healthcare, I feel a sense of realistic optimism. Every small change that’s made, is a step forward. Healthcare services are becoming more understanding and accessible for neurodivergent people, but it’s a slow process. Perhaps we don’t hear enough about the positive experiences, about the small moments that made a huge difference to people. However, hopefully the more we hear about or experience these positive shifts, it may help us build (or rebuild) trust in healthcare providers.
Resources & references:
https://www.england.nhs.uk/publication/health-and-care-passports/
NHS England (2022). Reasonable Adjustments. [online] www.england.nhs.uk. Available at: https://www.england.nhs.uk/learning-disabilities/improving-health/reasonable-adjustments/
Our Healthcare Prompt: https://neurodiversetraining.org/shop/health-care-prompt-sheet-60
Remie (she/her) is a Neurodivergent Speaker, Trainer, and Writer. Her work is founded on lived experiences, reflective practices, and professional experience. She is passionate about working together to create a more neuro-inclusive world to live, work and belong; a world that supports Neurodivergent wellbeing.
