I don’t know where to start. Initially, I didn’t want to write this. In fact, I would have much rather screamed into the void and simply taken a nap to avoid articulating this. Yet, I have to. I have to, not because anyone is forcing me to, but because I have friends and family who love me that don’t know a huge part of who I am. If you are my beloved cousins, aunts, uncles or friends reading this, I implore you to read it all. For me, try to approach this with an open mind. I am not reliant on your understanding, but would certainly be empowered by it.
To start, I want to tell you two facts about me that are simultaneously true. I am a twenty-six year old, well-educated working professional and writer with a passionate love for literary fiction. I am also someone who has to hoover their room every single day after just finishing work to feel as though the day is fully ‘closed’.
And no, the hoovering thing is not how I ended up being diagnosed with Autism Spectrum Disorder.
April was World Autism Acceptance Month, and I planned on sharing this then, but in reality, I just wasn’t ready. For the past few months, I have undergone rigorous assessments and testing, had my brain turned upside-down and inside-out, and the result was this – an autism diagnosis. Oh, and ADHD.
If you know me in real life, you may see me as someone who is articulate and able to hold their own in a conversation. Someone with a sharp mind. You might even think, if I’m being optimistic, that I can be witty and quick-thinking. You most certainly know that I can be hot-headed when it comes to justice, when I perceive any wrongdoing in the world. I guess what I’m trying to say is, if you know me, you will know that I am a complex person with strong opinions and no fear in sharing them.
Here’s the part where I tell you that there is more to my autism then would fit in an easy-to-understand and succinct snippet. Ideally, we’d both leave this blog post feeling rather happy with ourselves with utter empathy for the other. If only it was that easy.
When I was nineteen years old, I had just moved to Galway for university and I immediately adored it. Yet, I loved it whilst feeling constantly overwhelmed by my new home, new friends, new classes, new teachers, new buildings, everything. In October, this spiralled into a dangerous state of unwell whereby I simply could not pretend to be enjoying being a Fresher. The drinking, the loudness of the nightclubs with their sharp lights and crowding bodies, the house parties, the boys, the lack of structure, the pressure of grades, it was all too much. I dragged myself to the student medical unit and sat before a doctor who asked me what was wrong whilst adjusting his feather-patterned tie and clicked his pen, ready to write me a prescription. I said the only thing that felt true at the time;
“I don’t think I am made for this world. I don’t fit. I’m not the right flavour of person.”
The doctor took this as a surface level understanding of anxiety and thus, so did I. Deep down, I knew this wasn’t right. I wasn’t anxious, I simply did not experience the world in the same light as those around me. What was enjoyable to most, felt hideously overwhelming to me. I know from my parents that I’ve been chronically overwhelmed since birth.
It’s important at this point to make a distinction between what some may believe being overwhelmed is, and what I, and other autistic people, experience. I do not feel as though I simply have too much on my plate. Instead, I am seeing everything, always, in extreme, minute detail. Every noise, colour, smell or taste presses on my brain with such excruciating pressure. I cannot block things out, cannot minimise my senses. When I was fourteen and read the Twilight series, I could understand what the vampires meant when they described being able to hear the very crackling of a lightbulb ten feet away. I live in a constant state extreme.
This was no different as a baby or child. Ask my parents – I was always afraid of a perceived threat, even if that was just people who wore black clothes or the sounds of cows in a nearby field. The inbox tray inside of my head, the one we all have to receive information about the world around us, was full before I could learn to walk. My brain has been troubleshooting ever since. And in many ways, frozen like an old computer as I watch my the world’s joy, pain and intensity with horror in my heart.
Naturally, this sensitivity manifests itself in a few ways unique to each person with autism. What was once perceived as anxiety is actually an emotionally disregulated reaction to feeling too much at all times. To the people in my life, this can present as moodiness. Or maybe me just straight up being mean or snapping at small things. My brain is a kettle that is slowly heating up during each day, kicking it up a notch with each new pressure.
My day at work was rough. People were tense, sharp in their tone and I felt every shift in the energy of the air around me. Like everyone else, I had some meetings to attend, tasks to complete – responsibilities. My blood and every single sensation of my body begins to boil, growing to a simmer.
To make matters worse, I had to telephone someone to confirm an appointment and the person at the other end of the phone sounded harsh. My skin begins to itch and I realise lights in my office flicker every 14 seconds. I can hear the tick of the radiator at the other side of the room with my every second heartbeat.
Add on top of this, my joints are aching from sitting in the one position too long, but if I move too much or too oddly, I will be caught out as different and I cannot, under any circumstances, have that. What I want to do is ‘stim’ which means ‘self-stimulatory behaviour’ and can mean a huge range of movements, from twitch to scratching to dancing. When I am alone, I always move, twirling my hands or curling and uncurling my toes. Yet in a situation where this is a socially unacceptable behaviour, I make the movement small, unnoticeable. I went through the entirety of secondary school ripping the skin from around my nails under the desk, using a new plaster every few classes. Now, my work persona is a healthy, ‘normal’ person. The kettle under my skin grows hotter still. I can feel that my sock in my left shoe is twisted slightly to the left. Often, a headache begins to form behind my eyes and all of a sudden, I want to cry.
It’s close to breaking point but I can keep this tension under wraps, I can fake that I am fine with all of this attacking my senses. At least I can at work, or with my friends.
But what happens the moment I get home, my safe space and suddenly my Dad pokes me in the arm whilst making a joke? Well, it’s the straw that broke the camel’s back and my body enters a fight or flight mode brought on by the increasing tension all day and finalised by an unexpected touch.
I lash out, snapping, growing angry or freeze, my joints locking and seizing up entirely.
I don’t know how to describe this experience except to tell you that it feels as though every nerve ending in my body fires at once, short-circuiting my brain and leading me to either shutdown or meltdown. At the age of seven, I smashed a mirror because someone interrupted me during a conversation and I felt the ‘unfinished’ flavour of my sentence for hours afterward. At the age of twenty, I entered into a depressed state of numbness to cope with my failing health. I thank my own personal awareness now that I know why I feel this way, but all of the awareness in the world will not stop my brain structure.
I am not unstable, just different. And trust me, I’ve known I was different for a long time. There hasn’t been a family communion, birthday or christening that I’ve attended, including my own, where I haven’t felt like an entirely different species to those I share my gene pool with.
If you are my family or close friends reading this, you might think I am being dramatic. After all, if I was experiencing all of this all of the time, surely you’d have noticed, right? To that I can only say that I am a gifted actor when it comes to trying on different versions of myself depending on what a situation calls for. After all, the last thing I want you to notice me as is odd, different or weird.
This is not lying. I am kind, I am excitable and bubbly. But not all of the time – I have just kept this side of me under-wraps for twenty-six years, never having known why I feel as I do.
During my autism assessment, my highest score was for verbal processing and communication skills. My psychologist nodded at this, telling me that this makes perfect sense as to why I’ve been able to mask and camouflage all of my real feelings. In short, I command enough skill with words for me to manipulate them into what you need to see. Yet my sensory processing skills were terrible, by comparison. This means that the world takes my word for it that I am coping, after all, I can talk the talk. But behind the scenes, in my internal world, neurons are on fire.
I lay Myself Before You
To my family, I am Jens, a good daughter, granddaughter, cousin and niece who is probably a little too addicted to education. To my friends, I am reliable, sarcastic and insightful as I use my ‘different brain’ to spot patterns in people’s behaviours. Sometimes, I am energetic and creative. This is all true. But it is also simultaneously true that I am exhausted by social interaction. I have cried more times leaving a lecture hall due to the sheer number of people I just had to listen to sit and fidget than I care to admit. I leave events early, get home and strip out of whatever outfit was my costume that day and sit in my room, mercifully alone. I wrap my arms around myself just to remind myself that I am still intact and have survived another onslaught of whatever pub we gathered at, reminding myself that the ringing in my ears from music I cannot handle will fade and I will know peace again.
I cannot overstate to you just how tired I am. How very weary. Of simply living, of pushing through another day sitting in an office where other ‘normal’ people can somehow stand to listen to phones ringing, people talking, music playing and actually get work done! Trust me, I can too – I just suffer enormously after each day. Each work day has been a battle I am winning, but is sorely won. This fight has affected me physically, tearing down my immune system time and time again. I’ve come to expect the head colds or stomach bugs that will follow a highly social period of time, such as after Christmas or holidays. I know the exact spot where my adrenals sit atop of my kidneys because I can physically feel the adrenaline flooding my blood as I strive to handle the stress of literally just living. If you know me, you’ll know I have a long history with chronic fatigue. Well, I finally understand a huge contributing component of this.
Of course, my autism affects me in every aspect of my life as there is nothing that I do that isn’t autistic. I see that now. It does affect my pattern of thinking and how I process emotion. After all, I’ve never had much issue with sharing intimate details of my mental health or general life online because I simply do not understand the embarrassment others talk about. Why would I possibly care about another’s judgement of my own words that I know to be true? Equally, I do not understand morally wrong decisions others make. Everything from telling a single lie to terrorism – they’re literally all the same to me.
I follow the rules of life, one of which is simply to be a good person. To me, it’s always been that easy. For example, when I discovered the truth about animal agriculture and realised that veganism was the only diet to minimise the suffering of a sentient being, it was an easy switch to flip. It’s only now that I realise why others would ask me if I found it hard to change my entire lifestyle. It never occurred to me that the world was not quite so black and white for others.
I don’t connect to music or other forms of media as others do and never have, preferring audiobooks or listening to the same singular artist on repeat, actively avoiding new sounds should I be overwhelmed. I will never forget being in the yard of my primary school at the age of ten, being asked by the girls in my class if I even listened to Destiny’s Child. I panicked, promising them I did as I so desperately wanted to be accepted. When I got home, I found a cassette tape of them and listened with all of my might, willing my to ‘get it’. I have yet to ‘get it’ about nearly all forms of music. There was a time when the songs on the radio on the school bus each morning would dictate how emotionally sensitive I was for the entire morning. A single high pitched note can shake me to my core, having a lasting violent impact on my stability for the day. Same goes for strong tastes, flavours or lights.
The entirety of Soulja Boy’s Crank That 2007 success was a horrifying time and still gives me shivers.
There are so many things I could tell you that I experience to help you understand me better but the reality is, you don’t need to be bombarded with any more details. Maybe you’re reading this and feeling a little confused, or maybe you don’t believe my diagnosis. Maybe you believe that I am not what autism ‘looks’ like. Or worse still, you claim that everyone is ‘a little’ autistic, in their own way.
Here is where I ask you to do something for me, something I, and people like me, have always needed but rarely ask for. Think before you make comment. Please do not tell me that I do not look or act autistic, I promise you, that kind of invalidating comment is not the compliment you might think it is. Please do not tell me that I am ‘high-functioning’ just because I can mask all of my behaviours in a way that makes me ‘valuable’ to society. This is a simultaneous insult to those who are perceived as ‘more’ autistic, reiterating that their worth as a human being is based upon how well they can pretend to fit with a world without inconveniencing everyone else.
Autism is a spectrum of experience and is not linear. A person may struggle intensely socially, but not behaviourally or have additional sensory needs whilst finding social situations much easier by comparison. We are all an entirely different mash ups of these experiences.
If you are my family or friends and you wonder why I have not told you of this development over the past few months, please do not take it personally. The adjustment to this diagnosis, to looking at my whole life through a new lens, has been a huge emotional upheaval which I am still processing. Whilst technically nothing has changed, absolutely everything about how I view myself has changed. When you live for so long believing your true and hidden self to be wrong, reframing that is quite a challenge.
Ask questions. Ask anything you want to know and I will answer, as I need to be open about this going forward for my own sake. I have spent twenty-six years digging through the trenches in life with my fingernails, not realising that those around me had shovels. I am still learning all of the ways in which my brain is different and this has been, and continues to be, nothing short of a traumatic journey for me. To have lived a life where you believe yourself to be wrong, only to discover you are just different is a devastating blow. I am still coming to terms with all of the damage I, and others, have done to me by forcing me to pretend to be anything other than I am.
In many ways, my entire blog is testament to that as I have written more about my struggles with self-acceptance than anything else over the past five years.
Overall, this diagnosis has unlocked answers in my life that have caused me to feel a constant deep rooted tension for my entire life. Whilst this post explores many of the areas of my life I have struggled with that now make sense, I want to say that I have never felt as calm, happy or fulfilled as I have in these past few months. I feel free. And better still, I feel like me.
Be gentle. Be kind. Most of all, remember that there is no such thing as neutral language. Be watchful of your words. Throwing out flippant phrases of someone being on the spectrum or crazy or ‘a little OCD’ is horrifyingly damaging to hear when you yourself are classified under that particular title.
There is a saying I have learned recently that sums up all I have said here. “If you have met one person with autism, you have met one person with autism.”
I know I’ve also not touched on my ADHD diagnosis, as the diagnoses came together, as they often do. But I think I need to approach one chunk of new life changes at a time, one piece of processing at a time.
I’m going to stop here. On a final note, I will be back soon as the same old Jen as always. Just with a little more self-awareness.