Let's Talk About Autistic Sensory Sensitivity with Medications

Before I share my personal experience with medication, let’s get one thing straight: autism is not an illness, condition, or a pesky mosquito that needs to be swatted away with medication. Nope! We experience the world in a distinctive manner, and our uniqueness doesn't need to be "cured" or "treated". Autism represents a form of neurodiversity.

That being said, we get sick just like anyone else, as we are human, and it's not solely because of our autism. We catch a cold like others do, but we might feel the symptoms more intensely because of our sensory sensitivity, or we might not realise we have a cold until it becomes severe due to our hyposensitivity.

Taking medication is a highly personal experience because each of us has unique genetic makeup, medical histories, and dietary habits. Therefore, whether we require additional time to research each medication or need further explanations from medical professionals before determining if it is suitable for us, we are fully entitled to these needs and must advocate for our own health.

Let's get one thing straight: autism is not an illness, condition, or a pesky mosquito that needs to be swatted away with medication.

My Autistic Childhood: Sensory Sensitivity with Medications

As a child, I often came down with the flu. Each time, I was given medications to address my flu symptoms. In Asia, doctors typically prescribe a rainbow of tablets, a small bottle of cough syrup, and, most daunting of all, an injection in my buttock. All these measures were taken to treat flu symptoms.

Whether justified or not, this has been my experience with flu treatments in Asia. I've consistently struggled with the medications due to my sensory sensitivity in my early years. As an autistic child, I might not have been aware of the meaning of my autism, but I certainly knew that I absolutely hated those medicines. They were intensely bitter, as if someone had ground up a kilo of bitter melons and concentrated its essence into a single, taste bud-destroying dose.

The injection, on the other hand, ensures a steady flow of tears that could rehydrate all the plants in my doctor's clinic, provided they aren't worried about salt damage. The pain from the injection feels like a sharp and powerful punch to the butt cheek, concentrating all its energy on causing an intensely painful sensation, enough to make both children and adults give in to the discomfort. It always leaves a sore bruise that lingers for weeks afterward.

The Conundrum of Side Effects in Flu Medication

As a little girl, my sensitive taste buds have earned me nicknames for my picky eating habits. This sensitivity has persisted, affecting my sense of smell and taste, particularly with medicines. After my injuries, I realised that this sensitivity is heightened during sensory overload or autistic burnout. The unpleasant texture of the medicine also affects my sense of touch, turning each four-hourly dose into an ordeal.

During my childhood, I made every effort to swallow these medicines because I understood the care my grandmother showed by taking me to the doctor and looking after me, and medicine was expensive since we lacked free public healthcare services at the time. As I grew older, I overcame this sensitivity to medicines until my recent injuries.

Nonetheless, my sensory sensitivity extended beyond taste, smell, and touch. My stomach often takes centre stage in the dramatic episode of the Gastric Medicine Game. After the injuries, whenever I took medicine during or after eating, I would immediately vomit up both the medicine and the meal. Afterward, my head would take on the role of best supporting actor, spinning the stage with dizzy spells. Consequently, I often felt worse than before taking the medication and needed to sleep for hours, leaving me no choice but to play the Still and Quiet Horizontal Game on the sofa, as if my body required a shutdown to minimise the sensory overload beneath the surface. Have you tried turning it off and on again?

Reflecting on my childhood, I sought sensory safety by simply doing nothing but sleeping. This strategy is one I continued to employ as I grew older and wiser. While there is substantial research indicating that autistic individuals often struggle with change, my experience suggests I deal with change differently. I quickly adapt when the neurotypical world doesn't meet my needs for the right treatments; we simply don't adapt in the way neurotypical brains do.

The Great UK Adventure: The Unexpected Sensory Experience

The decision to move to the UK was rather sudden, as anything involving my biological father is typically abrupt and unplanned. One minute, I was living my life, and the next, I was packing my bags. Initially, we crashed at my biological father's cousin and his family in Scotland. The first couple of years after the relocation were marked by change. My first cousin's wife enrolled me in a school, and although I was placed in the wrong grade, I appreciated having some structure.

Shortly after my enrolment, my parents returned home. Yes, you heard that right. They left me and my brother with distant relatives to fend for ourselves in a cold, unfamiliar country. This is quite the classic move from my parents for me, but I was surprised they would leave their favourite son behind. Nonetheless, I enjoyed the opportunity to learn a new language and experience a different culture. Little did I know, I was also learning how to manage my own life—like a mini adult, but without the ability to buy my own snacks.

From Sickly to Serene: A Surprising Transformation

The most unexpected experience I had was that I stopped getting sick frequently—who would have guessed that changing my environment could be more effective than an endless supply of chicken soup? I always believed I was just a magnet for germs, but apparently, my surroundings were the real culprits.

Let’s break it down:

Peaceful Town in Scotland: Picture expansive landscape, rolling hills, sheep casually grazing, fresh air, and the occasional bagpipe serenade. In Scotland, the most stressful thing is choosing between tea or a slightly stronger brew. Or perhaps wondering when Bubble Tea will take the nation by storm? As a child, Bubble Tea was almost a religion for me.

Bustling City in Asia: This place is quite the opposite. It features towering skyscrapers, concentrations of pollutants, and a dense population. The city is always alive; it’s a 24/7 party where the only thing more frequent than traffic noise is the sound of my immune system waving a white flag. Nonetheless, it's one of the most convenient, vibrant, and culturally rich places on earth. Plus, snacks and Bubble Tea are available in abundance, and I adore it all the same!

For the first time, I was enveloped by serene environments where the most dangerous thing was a rogue breeze that might rustle my hair, or hailstorms that made me question if the world was ending. I transitioned from avoiding germs like ninjas in crowded streets to basking in the calm like a sloth on holiday. Who knew nature had such healing powers? Or perhaps it was just the absence of sensory overload!

As a result of my parents' spontaneous decisions, my early years were full of surprises, impulsive choices, and many life lessons. My childhood was a masterclass in adaptability. I discovered that life is unpredictable, similar to limited upbringing my parents provided. These spontaneous adventures shaped me into a strong and independent person, unexpectedly healthier, mostly because I had to develop a survival instinct. Additionally, I learned to embrace my individuality early, accumulating skills to navigate the neurotypical world without initially realising my autistic identity.

Another Adventure, Another Lesson

While adapting to the new environment, I was also getting acquainted with the UK medical system, including flu treatments, which were quite different from what I had experienced in Asia. After my family decided to move again, this time to England, I took on many adult responsibilities. One of these crucial tasks was registering my family with a GP, and I quickly learned to translate for them. You'd be amazed at how quickly one can learn when faced with such responsibilities.

Returning to the flu example, in the UK, the typical advice for dealing with the flu is to rest, stay hydrated, and use over-the-counter pain relievers if necessary. I was surprised to discover that doctors here aren't worried about the flu and generally advise that antibiotics don't work against viral infections such as the flu. This led me to question what I've been consuming all this time, subjecting my taste buds and stomach to a range of costly medications. Is this a tactic by the private medical industry? Or does the hot, humid climate significantly affect the immune system's ability to cope with the flu?

Luckily, since relocating to the UK, I hadn't caught the flu until last year, although that's a story for another day. I've experienced common colds, but not the intense flu I used to suffer from when I was younger. Throughout these life transitions, I realised that sensory experiences play a crucial role in our daily lives. When external factors like smell, sound, taste, temperature, or touch disrupt our sensory balance, they can eventually impact our physical health if our bodies accumulate enough disruptions and lack an effective way to self-regulate.

Even though I am one of the women received a formal autism diagnosis later in life, I have always been aware of my sensitivities and had an intuitive understanding of my sensory needs. Before my official autism diagnosis and the subsequent research, I was blissfully unaware of medical terms like sensory overload, sensory dysregulation, autistic burnout, or nervous system dysregulation. Some of us may not have known the lingo, but we were the original pioneers of sensory management.

Due to our distinct autistic sensory sensitivities to our surroundings, medications, and medical treatments, we were motivated by instinct to develop strategies to improve our environment and self-regulation techniques, even without knowing these terms. Conventional methods from usual channels might not have been effective for us; instead, we mastered to reclaim our health through trial and error by identifying personal triggers.

Here we are, on this lifelong journey of self-discovery and sensory management. It's not just about surviving; it's about thriving, one quirky strategy at a time. Even without widely recognised terminology to describe our experiences, we've always relied on our logic and intuition—and a sense of humour—to navigate this colourful world.

Quick Insight into Autistic Sensory: Transform Crisis into Comfort Zone

Initially, seeking sensory enlightenment wasn't a deliberate choice for me. Instead, I was experiencing significant sensory discomfort daily following my injuries, which was surprising considering my long-standing commitment to a healthy lifestyle. Since becoming a mini adult, I've consistently prioritised healthy living, eating, and drinking. Visiting the doctor was a once in a blue moon situation, but during this time, nothing seemed to alleviate my discomfort, and I couldn't logically understand the reason.

Back to the autism diagnosis process, I had to schedule a doctor's appointment. I finally got a telephone consultation. Let me tell you, nothing screams "I'm a responsible adult" quite like discussing your mental health over the phone while wearing pajamas. Shortly into this riveting conversation, the doctor casually dropped the bombshell: "I recommend you start antidepressant medication." Naturally, I had questions. I mean, who wouldn’t want to know what they’re putting into their body? I bombarded the doctor with inquiries about the medications, the reasoning behind them, and the diagnosis. You'd think I was trying to negotiate a peace treaty! But alas, the doctor didn’t seem to appreciate my inquisitive nature. I could practically hear the eye-roll through the phone. I guess in the world of telemedicine, asking too many questions is like trying to customise a healthy salad at a burger joint—just not done!

I was amazed—there's no medication for the flu, yet potent mental health medications can be prescribed in just minutes. How can a healthcare professional determine that an antidepressant is necessary after only a brief conversation, without any context? What is the rationale behind such a drastic medication for someone who is physically healthy and mentally resilient? I requested for more information about the exact medication and a referral to a specialist, but all I got was a link to the NHS website.

The choices appeared to be either diving into a delightful course of antidepressants, complete with a side of serious side effects and hope for the best, or I could do my own research. Yes, that's right—playing the stabbing game in the dark, hoping to identify the correct potential diagnosis before discussing with my GP again.

When presented with this dilemma while I was experiencing the maze of autism diagnosis, I decided to embark on a research marathon and discovered useful insights on sensory sensitivity from the National Autistic Society website. Armed with the guidance from NAS, I approached my GP to request a specialist assessment once more. Mentioning NAS helped the doctor take my concerns seriously, leading to an official referral. In short, that's how I joined the waiting list for the adult autism assessment.

Returning to the topic of medication, I was quite worried about the side effects since I am very attuned to how my body reacts to medicines. I'm someone who avoids even painkillers because my sensitivity is such that I experience side effects from even over-the-counter drugs. Therefore, I only pop a pill when I'm at the I can't walk stage—which I reached quite recently after my injuries. Honestly, at other times, I'd rather save those precious medical resources for someone who actually needs them.

During the autism diagnosis process, I wasn't aware of how important it was to self-advocate within the healthcare system for my own wellbeing. Inside, there was an undiagnosed autistic woman eager for an autism assessment to fully understand this aspect of my identity. Plus, the recovery process of my injuries shown me just how challenging it is when medical professionals don't recognise that I am experiencing autistic burnout, which intensified my sensory sensitivity.

While awaiting my adult autism assessment, I've also created a set of sensory safety techniques. I've transformed my sensory challenges into a comfort zone tailored to my heightened sensitivity and learned important lessons from my fellow autistic individuals. On the plus side, I’m getting a crash course in self-advocacy, research, and detective work—complete with a side of humour to keep me sane!

I wasn't aware of how important it was to self-advocate within the healthcare system. Inside, there was an undiagnosed autistic woman eager for an autism assessment to fully understand this aspect of my identity.

An Antidepressant Isn't Always the Solution

Imagine if I had simply accepted the prescription from my teledoctor and embarked on a bewildering adventure with antidepressants; this would have added to the ongoing problem of misdiagnosis caused by healthcare professionals' limited understanding of autism. Because nothing says "I acknowledge your unique brain" quite like a one-size-fits-all pill, right?

In the midst of chaos, I've realised I should trust my autistic intuition, as my heightened sensory sensitivity can be a strength in finding sensory safety for my personal needs. It's perfectly fine to use our unique understanding of what makes us comfortable, while the healthcare system might still be figuring things out, we're the real experts on our own brains.

As I mentioned, medication is a deeply personal experience. It's crucial to make decisions based on your own experiences and health. In my situation, I channelled my inner Judge Dee (Di Renjie) to analyse my options. I relied on my logical reasoning, tendency to focus on every little details, and pattern recognition to determine that taking the antidepressant prescription was about as appealing as a root canal. I believed that doing so might worsen my sensory sensitivity, negatively impact my senses, and potentially lead to a distrust of bodily signals. I opted for the path that least suppressed natural responses—like the ability to experience autistic joy and laugh at my own jokes while rolling on the floor.

It's okay to ask questions, even if you encounter eye rolls or miss them completely. Our inquisitive nature might make healthcare professionals uncomfortable, but dealing with daily discomfort from sensory sensitivity would be far worse if remained unregulated. Advocating for your own health might help you dodge the potential trauma of misdiagnosis. Plus, it can reduce the need to mask our unique brains. So go ahead, ask those questions!

In my research, I discovered that some studies indicate antidepressants, particularly SSRIs, can affect sensory processing, potentially causing or increasing sensory sensitivities in certain individuals. This may result in specific sensory disturbances like tingling, burning sensations, or a feeling of electric shock. Personally, the idea of feeling like I've just been zapped by an electric eel didn't seem like the recovery path I wanted to sign up for.

It's crucial to thoughtfully evaluate the possible impact of medications, whether they come with a doctor's signature or a fancy advert with a catchy jingle. Our health should always be a priority over external influences or judgements. I've always knew that my sensitivity has a grand purpose, ready to detect even the slightest hint of discomfort, which others might misconstrue or dismiss as oversensitivity or overreaction. It's natural for us to give it a good hard think before taking medication. After all, we want to be the main character in our lives, not just a sidekick to a host of strange sensations! Be the protagonist, not a passive observer!

Suggestions for Autistic Adults

While others may not recognise the real danger, we are attuned to the overwhelming sensory inputs from medications, which triggers our survival instinct about potential threats entering our bodies. Regulating our sensory experiences plays a functional role and helps us establish a foundation for self-regulating when taking medication, contributing to our physical, mental and emotional wellbeing. Here are some questions for our curious minds to consider:

• What steps can I take to better understand the importance of my sensory experiences related to medications?
  

• How can I adapt my responses to sensory stimuli in my surroundings to better align with my sensory needs before considering medication?
  

• Have I observed any changes in my sensory experiences based on past interactions with medication?
  

• How can I check-in with my sensory regulation? Do I need to minimise sensory inputs like light, noise, or adjust the temperature?
  

• How do I create a plan for sensory self-care?

  
  

Suggestions for Healthcare Professionals

Before prescribing mental health medications like antidepressants, consider the following questions:

• Is the individual neurodiverse? Could it be sensory overload or sensory dysregulation or autistic burnout?
  

• Can sensory support be provided as an alternative to medication?
  

• What methods can we employ to better understand the sensory impact to aid the individual?
  

• Has the individual experienced any sensory disruptions?
  

• How can I support the individual in identifying personal triggers for sensory sensitivity?

  
  

Gain Mastery Over Sensory Experience

For neurodivergent individuals like us, sensory sensitivity can be inconvenient, yet I mostly see it as a survival instinct based on logic—a different approach to decision-making. When sensory overload becomes a daily challenge, it keeps our nervous system in a constant state of fight-flight-freeze, inundating the body with signals perceived as threats. Personally, I don't believe there's a magic pill for such complexity. Instead, it requires:

• Discover Sensory Safety

  Such as finding a cozy space in a world of chaos.
  

• Focusing on Nervous System Regulation and Recovery

  Because even our nervous systems need a holiday.
  

• Taking Breaks from Sensory Input

  Think of it as hitting the mute button on life's loudest moments.
  

• Advocating for Healthy Boundaries and Communication Methods That Suit You

  Like using a megaphone to say, "Please don't touch my hair!"
  

• Prioritising Self-Care

  Sometimes we just need to binge-watch our favourite show in the comfiest pajamas with a lot of snacks.

Keep in mind that autism isn't something that needs to be cured; it's an integral and vibrant aspect of our identity. While medication can help some people navigate the world, it's not a magical solution. Whether you are neurodiverse or a sensitive soul, adopting personal sensory regulation strategies lays the foundation for our sensory wellbeing, so embrace the adventure of self-regulation.