Understanding My Autism Diagnosis at 39 And What It Means Living with Endometriosis
- Apr 7
- 24 min read
Updated: Apr 10
A Diagnosis That Did Not Begin at 39
I was diagnosed with Autism Spectrum Disorder at 39. Clinically, autism is a neurodevelopmental condition. It does not suddenly appear in adulthood. It is present from early development and shapes how a person processes communication, social interaction, sensory input, and patterns of thinking.
The diagnosis did not give me something new. It gave me language for something that had always been there.
When People Say “Everyone Has Autism”
Over the past few days, one phrase has come up a few times.
“Everyone has autism.”
I understand where that comes from. Sometimes, it is said to comfort. To normalise. To make things feel less distant.
But autism is not something that can be generalised in that way.
Autism Spectrum Disorder is defined clinically by a consistent pattern of differences in social communication, alongside sensory processing differences and patterns of behaviour that are present from early development and impact daily functioning.
It is not about having a few traits.
Someone can prefer routines, feel socially awkward, or be sensitive to noise. But autism is not made up of isolated traits. It is a pattern that runs across a lifetime.
For most of my life, what I experienced was often seen as separate things. Personality. Stress. Depression. But it was never just a collection of small differences. It was something specific. Something consistent. Something that had always been there. I just did not have the language for it.
Early Development and Risk Factors
I was born prematurely at eight months. My mother had me in her late 30s, which is medically considered advanced maternal age. Research has shown that both prematurity and advanced maternal age are associated with a higher likelihood of neurodevelopmental differences, including autism. These are not causes on their own. But they are recognised contributing factors in how the brain develops early on.
I also underwent surgery at four years old due to tuberculosis. While this is not directly linked to autism, early medical experiences, especially those involving hospitalisation, procedures, and disruption to routine, can shape how a child processes stress, safety, and sensory input. When I look back now, it is not just the presence of these factors that stands out to me. It is how I experienced the world around them. From very early on, my way of relating to my environment, to people, and even to my own body, did not follow what would typically be expected.
I did not experience things in a linear or purely external way. I experienced them internally, visually, and intensely. Even before I had the language to describe it, my responses to comfort, to sensation, to interaction, and to change already reflected a nervous system that processed the world differently.
So when I look at these early factors now, I do not see them as explanations on their own. But I do recognise that they existed alongside a neurodevelopmental pattern that was already present.
Looking back, my early development was not typical in the way I related to the world.
It was not something that appeared later. It was something that was always there.
A Childhood That Was Quietly Different
As a child, I was very comfortable being alone. I did not feel the need for constant social interaction in the way that others seemed to. I could spend long periods of time on my own without feeling lonely, because my engagement with the world was often internal. When I did play with others, I found myself more at ease in environments that were action-based rather than socially complex. I remember being more comfortable with boys at that age, not because of preference in the way it is commonly understood, but because there was less expectation to interpret emotions, less need to respond in socially expected ways, and fewer unspoken rules to navigate.
At the same time, my inner world was vivid and deeply immersive. I have always thought in images. Conversations, ideas, and even emotions appear in my mind as visual scenes. When I speak, I am often translating from pictures in my head into words.
This form of visual cognition is commonly described in autism, where thinking can be highly pictorial rather than purely verbal or abstract.
I remember once finding a dead bird in my school’s lawn and instinctively creating an entire burial procession for it. In my mind, I could see every step clearly, including the Islamic rites, the sequence, the atmosphere. It was not something I was acting out for others, and it was not performative. It was something I was fully experiencing internally. The world I held in my mind felt as real and as structured as the one outside of me.
Looking back, what stands out is not just that I enjoyed being alone, but that I did not experience solitude as absence. I experienced it as presence. My engagement with the world did not depend on constant external interaction. It was already happening, vividly and continuously, within me.
Repetitive Behaviours and Self Regulation
There were also behaviours that I now understand as forms of self regulation. As a child, I was naturally drawn to certain movements and sensations that brought me comfort, even though I did not have the language to explain why. I found a deep sense of safety under blankets, a kind of containment that helped me feel settled in my own body. When I was lying down, I often needed to move my feet repeatedly, almost instinctively, as a way to regulate that internal restlessness. I also made sudden sounds and vocalisations, and at times my body would jolt, as if I needed to release something that was building inside me.
Even now, that sensation still exists. There are moments where it feels like something is crawling under my skin, and the only way to ease it is through movement or sound. It is not something I consciously choose. It is something my body seeks in order to regulate itself.
Clinically, these are known as stimming behaviours, which help regulate sensory input, manage internal tension, and support emotional balance. They are commonly seen in autistic individuals as a way of maintaining equilibrium in a world that can often feel overwhelming.
At that time, it was never something I questioned. It was not labelled or corrected. It was simply part of who I was and how I existed in my body.
Learning to Perform Instead of Belong
As I grew older, I learned how to function in ways that were expected of me. I did not just do well academically. I excelled. I completed a double diploma and graduated with an honours degree. I became articulate, participated in debates at a national level, and took on leadership roles, including serving as a Vice President in the student council. From the outside, it looked natural. It looked like confidence. It looked like I belonged in those spaces.
But it was not effortless.
What allowed me to perform at that level was not instinctive ease, but structure. I relied heavily on memorisation and rehearsal. I would prepare extensively before any situation that required me to speak, present, or engage. I built scripts in my mind. I practised how I would respond. I studied patterns in communication and followed them closely so that I could participate in a way that was expected.
What people experienced as confidence was often the result of preparation, repetition, and control over variables that I could anticipate.
Clinically, this is described as masking. Masking refers to the process where an autistic individual adapts to social environments by learning, imitating, and applying expected behaviours in order to function. It is not deception. It is a form of compensation that allows participation in spaces that are not naturally aligned with how one processes communication.
And for a long time, it worked.
But it came with a cost.
Because masking is not passive. It requires constant monitoring, constant adjustment, and sustained cognitive effort. It is the ongoing process of translating, filtering, and responding in real time.
So while I was achieving, leading, and excelling, there was always an underlying effort that was not visible.
I was not just participating.
I was performing.
The Cost of Social Interaction
After interactions, especially those that required sustained engagement, my body would respond in ways I did not fully understand at the time. My hands would tremble, my teeth would chatter, and I would feel intensely cold, almost as if my body was shutting down after being “on” for too long. I initially thought this was anxiety or stage fright, something situational and tied only to high-pressure environments like presentations or competitions.
But over time, I began to notice that it was not limited to those moments.
It happened after everyday conversations. After gatherings. After any interaction that required me to stay engaged, respond appropriately, and process in real time.
Unless I was with my husband or a few close friends, where communication felt more natural and less effortful, I needed significant time to recover. Not just hours, but days. Sometimes up to a week where I would withdraw, reduce interaction, and allow myself to reset.
Looking back now, this was not simply anxiety. This pattern aligns with what is clinically understood as social fatigue in autism, where prolonged social interaction depletes cognitive, emotional, and sensory resources. The effort involved in processing conversation, interpreting cues, managing responses, and maintaining masking builds up over time, and the body eventually responds to that overload.
What I experienced was not a lack of resilience. It was the physiological and neurological cost of sustained adaptation.
Communication That Requires Structure
Communication has never been effortless for me. It is not that I do not have thoughts or clarity. In fact, I often know exactly what I want to say. But the process of translating those thoughts into words, especially in real time, has always required structure.
When I have time, I can express myself clearly. I can organise my thoughts, sequence them, and communicate in a way that is precise and coherent. But in spontaneous situations, where responses are expected immediately, I struggle to access that same clarity. The words do not come out in the way they exist in my mind. There is a gap between knowing and expressing. This reflects differences in processing speed and executive functioning, particularly in how information is organised, retrieved, and verbalised under pressure.
I also process language more literally. Sarcasm, indirect communication, and implied meanings are not always intuitive to me. I often need to consciously interpret what is being said beyond the words themselves, which adds another layer of effort during conversations.
This is also why I struggle with phone calls. Phone calls require immediate responses, without visual cues, without time to process, and without the ability to structure my thoughts beforehand. There is no pause, no space to organise what I want to say. Because of that, I often avoid answering calls, not out of disinterest, but because I know I may not be able to respond in the way I intend.
This is why I rely on scripts. Before interactions, I prepare. I think through possible scenarios, structure my responses, and rehearse how I want to communicate. This allows me to participate in a way that feels aligned with what I actually mean. Not because I am unprepared. But because I am trying to be accurate.
Because without that structure, what is in my mind does not always translate in the way I intend.
Living in a Sensory World
Sensory processing differences have been a significant part of my experience, even long before I understood what that meant.
Sound, touch, and visual input do not come in at a neutral level for me. They can feel amplified, intrusive, and at times overwhelming. A simple ticking clock is not background noise. It becomes something I cannot unhear, to the point where I had to remove it from my room entirely. Concerts, especially those with heavy bass, are not just loud. They feel physical. My heart races, my stomach turns, and it feels like my body is reacting from the inside out.
Certain textures can also be distressing. Grass, for example, does not just feel uncomfortable. It feels like something is crawling under my skin. It creates a level of sensory discomfort that is hard to ignore or push through.
At the same time, my sensory experience is not only about sensitivity. It is also about how I regulate.
There are forms of sensory input that feel grounding. When I listen through headphones, I can control the intensity, and what might otherwise feel overwhelming becomes manageable, even soothing. I am also drawn to visual stimuli like flickering or coloured lights, which can feel calming in a way that is difficult to explain.
This contrast is important.
It is not about liking or disliking certain things.
It is about how my nervous system processes and responds to input.
Clinically, this is described as sensory hyperreactivity, where the brain processes sensory information at a heightened level. But it is not only about sensitivity. It is also about the need to actively regulate that input in order to feel balanced.
So what may appear from the outside as preference or sensitivity is, for me, regulation.
It is how I maintain equilibrium in an environment that often feels too much.
Structure, Systems, and Visual Thinking
One of the ways I have adapted to the world is through structure. I am highly organised and detail-oriented, but it is not just about being organised. It is about how I think.
When I plan something, I do not just list steps. I see it. I hold the entire sequence in my mind before it happens, almost like watching it unfold in advance.
This is how I organise events like Wear Yellow SG EndoMarch. I do not approach it piece by piece. I visualise the entire flow, from the moment someone enters the space, to how the programme moves, to how people feel within it. I can see the transitions, the timing, the positioning, and the experience as a whole before anything is physically set up.
I have even told my husband before that if he could see what I see in my head, he would understand why I plan the way I do. And it is only when the event actually happens that others begin to see what I had already seen.
This way of thinking is not something I learned later. It has always been there. It is the same pictorial way I process conversations, ideas, and experiences, but applied to systems and structure.
Clinically, this aligns with what is described as systemising and visual thinking in autism, where there is a strong ability to recognise patterns, organise complexity, and mentally simulate outcomes.
For me, structure is not just a preference.
It is how I make sense of the world.
It is how I reduce uncertainty.
And it is how I translate what exists in my mind into something that others can experience.
Routine, Predictability, and Disruption
Routine has always been more than a preference for me. It is how I regulate.
When my day follows a predictable structure, I function with more clarity, stability, and energy. It reduces the cognitive and sensory load on my system, and allows me to move through the day without constantly recalibrating.
Over time, this has also shaped how others see me. I am often perceived as highly motivated, disciplined, and consistent. And while that is true on the surface, what is less visible is that this consistency is not driven purely by motivation. It is driven by regulation.
Structure keeps my system steady. It allows me to function in a way that feels manageable. Because of that, I naturally gravitate towards routines, systems, and a sense of forward movement.
This also explains why rest can feel complicated for me. It is not that I do not value rest. I actually love stillness. The kind that is intentional, quiet, and grounding.
Rest has to feel deserved. It has to feel purposeful. When it does, it settles me.
This became very clear during my orthopaedic surgery. I underwent a high tibial osteotomy, together with arthroscopic procedures to address a medial meniscus tear and significant cartilage damage. The surgery involved cutting and realigning the tibial bone to shift weight away from the damaged area. It is a major procedure with a long recovery process.
After surgery, mobility was significantly restricted. Weight-bearing had to be controlled, movement was limited, and daily functioning required support. Rehabilitation involved structured physiotherapy and gradual progression over months.
But beyond the physical recovery, there was a deeper impact. There was pain, immobility, dependence, and a complete disruption to the rhythm I was used to. Even simple tasks required more effort and adjustment. What followed was a noticeable drop in my mood and functioning. At the time, it was understood as depression. Looking back now, I understand that it was also a disruption in regulation.
In autism, routine provides stability. It reduces uncertainty and helps the system manage ongoing demands. When that structure is suddenly removed, especially in a context involving physical stress and loss of independence, the impact can be significant.
What I experienced was not simply an emotional response.
It was my system trying to adjust without the framework it had always relied on.
Hyperfocus, Special Interests, and Performance
Another pattern that has been consistent throughout my life is the way I focus. When something aligns with my interest, I do not engage with it lightly. I go deep.
Clinically, this is often described as hyperfocus or engagement with special interests in autism. It involves sustained attention, deep processing, and a high level of commitment over time. For me, this has shaped how I approach many things in my life.
More than a decade ago, I competed in fitness pageantry. This was at a time when women’s bodybuilding was not as established as it is today. I did not have prior experience. I did not have formal guidance. I was also navigating endometriosis and adenomyosis. But I still made it through.
I immersed myself in learning, training, nutrition, and discipline. I observed, adjusted, and built my own structure from the ground up. Once I set my mind on something, I was able to sustain that focus with consistency.
This is something I recognise across my life. When something matters to me, I can commit to it fully. I learn deeply, build systems around it, and see it through. It is also why I am able to become good at things I put my focus on.
But this ability comes with a cost.
Hyperfocus can make it difficult to disengage. It can blur the line between commitment and overextension. I can keep going even when I am tired, and rest does not always come naturally in those periods.
When combined with caregiving, work, and chronic illness, this can contribute to burnout. So while this ability has allowed me to build, achieve, and create, it is also something I am learning to regulate.
To know when to go deep. And when to step back. Because being able to focus intensely is a strength. But sustainability is what allows me to continue.
Emotional Depth and Empathy
I experience emotions deeply, especially in response to injustice. It is not something I can switch off or distance myself from.
When something feels unfair, it does not stay as an idea. It becomes something I feel in my body, something that compels me to respond.
This has shaped much of what I do. It is why I have spoken up about endometriosis and adenomyosis, why I advocate for causes like Palestine, and why I now speak about autism. It is also what led me to build E for Endometriosis. My response to injustice is not measured. It is immediate, intense, and difficult to ignore.
Autism is often misunderstood as a lack of empathy. But research now recognises that many autistic individuals experience strong emotional empathy, sometimes even more intensely than what is outwardly expressed. The difference is not in whether we feel, but in how we process, express, and sustain those emotions within social contexts.
For me, the challenge has never been feeling. It has been sustaining connection in the way it is expected. I can care deeply. I can show up with intention. I can be present in moments that have purpose and meaning.
But ongoing emotional reciprocity, especially in relationships that require constant back-and-forth engagement, can become overwhelming over time. Not because I do not want to connect, but because of the level of processing, interpretation, and energy it requires.
There is also a part of this that I have come to understand more clearly with time. For a long time, I saw people as inherently good. I took words as they were said. I trusted that intentions matched what was expressed. I did not naturally read into what was not said, or question underlying motives in the way others might.
This way of relating is also described in autism, where communication is often processed more literally and social nuances, including unspoken intentions, are not always immediately apparent.
Because of that, some lessons came through experience. There were times I was taken advantage of. Times I felt deeply disappointed. Times I realised that not everyone relates to the world with the same sincerity I do. It was not a lack of awareness. It was the way I understood people. So, what others may sometimes perceive as distance or guardedness now is not a lack of care. It is something that has been shaped. It is the result of learning how to hold my empathy while also protecting myself. Because I have never struggled to feel. I have only had to learn how to live with that depth in a world that does not always meet it the same way.
Relationships and Social Exhaustion
I am able to engage meaningfully in purposeful interactions, especially in advocacy and community work. In those spaces, there is structure, intention, and a clear direction. I know what I am there for. I know what needs to be said, what needs to be done, and how I can contribute. That clarity allows me to show up fully.
But close interpersonal relationships can be more complex. They are not structured in the same way. They require ongoing emotional reciprocity, spontaneous responses, reading between the lines, and sustaining connection over time without a clear framework. That kind of interaction can be cognitively and emotionally demanding for me.
I have often been described as distant or guarded. But internally, that has never been the intention. Internally, I am often trying.
Trying to respond in the right way. Trying to connect in the way that is expected. Trying to understand what is needed in that moment. Trying to sustain the interaction so that it feels mutual and meaningful. But that effort is not always visible. Because while I am processing, interpreting, and responding, there is also a constant layer of adjustment happening at the same time. And over time, that becomes exhausting.
After gatherings, especially with extended family or environments where there are many unspoken expectations, I often feel anxious, overwhelmed, and depleted. I can spend up to a week needing to withdraw, reduce interaction, and recover.
It is not because I do not value relationships. It is because sustaining them in the way that is expected requires a level of continuous processing and energy that is difficult to maintain. So what may be perceived as distance is not disengagement. It is the cost of trying to stay connected in a way that does not come naturally to me.
Burnout, Depression, and the Path to Diagnosis
For many years, what I was experiencing was understood as depression. In 2014, I was admitted to the Institute of Mental Health following my second suicide attempt. What I experienced then was an intense, consuming form of depression. It was heavy in a way that felt deeply emotional and internal. The pain centred around despair. It felt like something collapsing inward.
You may read the full story of my suicide attempts and admission at IMH here: https://www.endosupport.sg/post/part-1-breakdown-before-breakthrough
In the years that followed, I continued to seek psychiatric care at different points in my life. Across these years, I was consistently diagnosed with depression and anxiety. And those diagnoses were not entirely wrong. But they did not explain everything. Because over time, I began to notice that some of my later episodes felt different from what I experienced in 2014.
There was still heaviness. Still a loss of motivation. Still a sense of not being able to function.
But the quality of it was different. These episodes often followed prolonged periods of overwhelm. Periods where I had been engaging intensely, masking continuously, making constant decisions, managing caregiving responsibilities, and pushing through sensory and social demands without enough recovery. Especially in seasons where I was caregiving, working, and sustaining advocacy work all at once.
There was a clear pattern. A period of overextension. Followed by a sharp drop in functioning. A state where even basic tasks felt impossible. My body would slow down. My thinking would become harder to access. My ability to respond would reduce.
It felt less like collapsing emotionally, and more like my entire system was overloaded and shutting down. That difference stayed with me.
What I now understand is that some of these experiences were not purely depressive episodes. They were likely autistic burnout and shutdown.
Autistic burnout is clinically described as a state of chronic exhaustion, reduced functioning, and increased sensitivity. It often occurs after prolonged stress, especially from sustained masking, sensory overload, and navigating environments that are not aligned with how the individual naturally processes the world.
Shutdown, which can accompany burnout, is a protective response where the body and mind begin to withdraw. Speech can become harder. Movement can feel limited. Engagement with the external world reduces because the system is overwhelmed.
Looking back, my body was not failing me. It was responding.
Responding to prolonged overload. Responding to years of adapting without fully understanding what I was adapting to. Responding to demands that exceeded what I could sustainably process. The label of depression was not entirely wrong. But it was incomplete.
Because it did not account for the underlying neurological differences that shaped how I experienced stress, interaction, and recovery. And without that understanding, I was trying to manage the outcome without fully understanding the cause.
Most recently, last year, I was again under the care of a psychiatrist through the polyclinic. At that point, I began to articulate this pattern more clearly. I shared that what I was experiencing did not feel entirely like depression in the way I had known it before.
I also began to question if there was something underlying that had not yet been identified. Around the same time, I started comparing my experiences more closely with others. My husband has ADHD, so I had a direct point of reference for another form of neurodivergence. But what I experienced did not align with ADHD. The sensory sensitivities, the need for scripting, the social exhaustion, the shutdowns, and the way I process interactions felt fundamentally different. I also realised that what I was experiencing did not align with what is considered neurotypical. That was when I raised the possibility of autism to my psychiatrist. From there, the process became more structured.
Since I was already under the care of a psychiatrist at the polyclinic, my psychiatrist first arranged for an initial assessment for autism based on the patterns I had been describing. During this stage, my symptoms, behavioural patterns, and developmental history were explored through a clinical interview.
Given the complexity of what I was describing, I was then referred to another doctor within the same system for a second assessment. This was to ensure that my presentation was evaluated from more than one clinical perspective, and that the patterns observed were consistent.
With consistent observations across both evaluations, I was then referred to the Institute of Mental Health for a comprehensive diagnostic assessment. This marked the transition from general psychiatric care into a more specialised neurodevelopmental evaluation, where the focus was not just on symptoms, but on lifelong patterns, developmental history, and how I process the world across different domains. The waiting period itself took about four months.
When I was finally seen at IMH, the assessment was thorough and detailed. I was asked to bring supporting materials such as my school report books, and ideally, a parent or sibling who could provide collateral history from my early development. However, that was not possible for me. My parents were born in 1947. They do not have the awareness of autism in the way it is understood today, and both of them are unwell and wheelchair-bound. I was also unable to bring my sibling. So the assessment proceeded without collateral interviews.
Instead, the psychiatrist relied on a detailed developmental history that I provided. He explored my early childhood in depth, including my prematurity, how I interacted, how I communicated, how I played, and how I processed the world. He also observed how I spoke, how I moved, and how I responded throughout the session.
He also reviewed how I structure my communication, including my reliance on scripts, and examined patterns across my life rather than isolated behaviours. Family history was also explored. On my paternal side, I have an uncle with severe autism, which is clinically relevant given the strong genetic component associated with autism spectrum disorder.
Although I had only one assessment session at IMH, it was not a standalone evaluation. It was built on the earlier assessments conducted at the polyclinic. Taken together, the process spanned several sessions across different points of care, allowing for consistency in my history, presentation, and patterns to be assessed over time.
And even without parental input, the overall picture was clear.
After the comprehensive evaluation, I was formally diagnosed with Autism Spectrum Disorder, Level 1.
Looking back, it was not a new condition. It was an explanation. An explanation for why what I experienced in 2014 felt different from what I experienced in later years. An explanation for why depression alone never fully captured my reality. An explanation for patterns that had always been there but were only now understood in full. For the first time, everything connected.
What This Diagnosis Means for My Medical Treatments
This diagnosis has helped me relook at my medical journey with a different level of clarity. It does not mean autism caused my endometriosis or adenomyosis. These are separate conditions with their own biological mechanisms. But what it does help explain is why my responses to certain treatments, especially medications, have not always been typical.
In endometriosis care, hormonal treatments are commonly used. While mood-related side effects such as low mood or depressive symptoms are recognised, they are generally not experienced at a severe level by most individuals.
But in my case, there were periods where I became profoundly affected.
There were treatments where I felt an intensity of low mood that went beyond what I had previously experienced. It was not just feeling down. It felt consuming, heavy, and difficult to regulate. At that time, it was difficult to understand whether it was the condition, the treatment, or something else entirely.
Looking back now, it begins to make more sense.
As an autistic individual, my nervous system processes internal and external input more intensely. This includes sensory input, emotional shifts, and physiological changes. So when there are hormonal fluctuations or medication effects, my system may register and respond to them more strongly. This does not mean the treatment was incorrect. But it does mean my response to it may not follow the average experience.
There were also treatments that I tolerated better. And at that time, I did not have the language to explain why.
Now, I understand that it may be because those treatments were more aligned with what my system could regulate. The balance between effectiveness and tolerability is not just about the condition itself, but also about how the individual body and nervous system processes the treatment.
This is also why decision-making around treatment has always felt particularly heavy for me. Endometriosis care often involves weighing multiple options, each with different trade-offs. For someone who already experiences cognitive load more intensely, and who processes information deeply before making decisions, this becomes more than just a medical choice. It becomes something that requires significant mental and emotional energy.
There is also the layer of sensory and environmental factors. Consultations, hospital settings, procedures, and recovery phases all involve unpredictability, sensory input, and changes in routine. These are not just inconveniences. They directly affect how my system copes.
So when I look back at my journey, I do not just see a series of treatments. I see a pattern of how my body responded. Why certain medications felt unbearable. Why some periods became emotionally overwhelming. Why other treatments felt more manageable. It was not random. It was my system responding in the way it was wired to.
This diagnosis allows me to approach treatment differently now. Not just asking what works clinically. But also asking what is sustainable for my system.
What I can regulate through. What I can tolerate long term. What allows me to function, not just survive. It also helps me advocate for myself more clearly. To say that if something feels too much, it is not necessarily a lack of resilience. It may be a mismatch between the treatment and how my body processes it. And that is something that deserves to be taken seriously. Because treatment is not just about managing the condition. It is also about whether the person living through it can remain well enough, in every sense, to continue.
Regression and Unmasking
After my diagnosis, I began experiencing what is clinically described as regression in late-diagnosed autistic adults. This does not mean that I have lost my abilities. I can still think, plan, organise, and function in many of the ways I always have. But what has changed is the effort it takes to sustain that functioning. Before my diagnosis, I was masking almost constantly, often without realising it. I was scripting, rehearsing, adjusting, observing, and responding in ways that were expected of me. It had become automatic.
After the diagnosis, that ability to sustain masking became harder. Not because I am trying less, but because I am now more aware of how much effort it actually takes.
With that awareness, my sensory sensitivities feel more intense. Sounds feel sharper, environments feel heavier, and my tolerance for noise, unpredictability, and stimulation has reduced. Social interactions also feel more demanding. I used to rely heavily on rehearsed scripts to carry myself through conversations and gatherings, but now I find it harder to hold onto those scripts in the same way. The processing feels slower, the effort feels more visible, and the fatigue comes in earlier. Even replying messages can take time, not because I do not want to respond, but because I am trying to process, structure, and communicate accurately, and that requires energy.
At the same time, I am also going through the process of unmasking. This is where I am learning to live in alignment with how I am wired, instead of constantly adapting myself to meet external expectations.
It means recognising when I am overwhelmed instead of pushing through, allowing myself to rest without guilt, and accepting that I may need structure, time, and space in ways I did not previously allow. But this is not an easy process, especially because my responsibilities have not changed. I am still caregiving, still managing daily demands, and still showing up for the work that matters to me.
So I am learning to navigate both at the same time. There are days that feel clearer, and there are days that feel heavier. At times, it feels like I am relearning how to exist within my own life. This is not a finished process. I am still in it, still adjusting, still understanding, and still finding a way to live in a way that is sustainable for me.
Moving Forward With Understanding
Autism, for me, is not a limitation. It is an explanation. It gives language to patterns I have lived with my entire life but never fully understood. It allows me to see my sensitivities, my responses, my exhaustion, and even my strengths through a lens that is both clinically grounded and deeply personal.
For the first time, I am not trying to fix myself. I am no longer asking why I am like this in a way that comes from self-doubt or self-blame. Instead, I am learning to ask what I need, what supports me, and what allows me to function in a way that is sustainable.
It also changes how I see my past. Things that once felt like personal failures now make sense as patterns. Things I pushed myself through now have context. Things I could not explain now have clarity. And that shift is not small. Because understanding changes how I relate to myself.
I am learning that regulation matters more than performance. That sustainability matters more than pushing through. That working with my system will always take me further than working against it.
This does not mean everything becomes easier. But it becomes clearer. And in that clarity, there is space. Space to adjust. Space to set boundaries. Space to live in a way that does not come at the cost of myself.
For the first time, I am not trying to become someone else.
I am learning to understand who I have always been.
And that, in itself, is a beginning.
April Is Autism Awareness Month
April marks Autism Awareness Month. But for me, awareness is not just about knowing that autism exists. It is about understanding how it actually shows up in real lives. How it can be missed, especially in women. How it can be masked, misunderstood, and mislabelled for years.
It is about recognising that not all struggles are visible. And that sometimes, what looks like strength or resilience on the outside has been built on years of adaptation and exhaustion.
If there is one thing I hope this sharing does, it is this. To create space.
Space for those who are still questioning. Space for those who have always felt different but never had the language for it. Space for those who are learning, unlearning, and trying to understand themselves more deeply.
Awareness is not the end. It is the beginning of understanding, compassion, and change.
And if you see yourself in any part of this, know that you are not alone 🤍
Namira Mohamad Marsudi
Founder
E for Endometriosis
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