BEING NEURODIVERGENT - WHAT IT FEELS LIKE

A guest post by Roohi, on what it's like to be neurodivergent.

The term ‘neurodivergence’ has been my biggest revelation of 2022. An epiphany, an aha moment, a clarification of who I am, and how my brain works. A sense of relief. Permission to hate myself lesser. Validation. Acceptance.

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Since I can remember, my brain has felt like a buzzing bee. Always on, and hard at work. One of my few childhood memories is sitting in a car and making equations out of the numbers at the back of the cars.

My brain feels very detail-oriented, focused, and sharp, when it wants to be. It reduces room for error or inefficiency as much as possible, and plans out a set of tasks in the most rational manner. I schedule the task as well as the step prior to ensure it gets done. I love lists - it is second nature to me. Because I know if I don’t, I will be on the precarious edge of losing that thing forever. I surprise myself sometimes. I remember to  plan a task, and I go to find I have already anticipated and done the thing. My brain is according to some folks, ‘Type A’.

Like any other machine, it feels like a computer that short circuits at times. My brain feels like it is moving faster than my body. Or my body is just not catching up. I’m in a limbo in those moments, neither here, nor there. The details escape me, or  sometimes the whole point in general.

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Social situations in particular have always made me anxious. The topic of many of my therapy sessions has been my fear of being either too much, or not enough. Smaller groups of 3-4, I could handle better, but even those used to be a battlefield at times. I can’t keep up with conversations. Small talk feels like an uphill task. ‘How are you?’,‘What did you do last weekend?’, and other seemingly innocuous questions instantly make my brain go blank, even if we are just on Monday.

When I choose to speak up in groups, I regret it instantly. If someone doesn’t hear me, or addresses someone else, or even slightly does not validate what I said, I feel a deep sense of rejection. My brain goes in overdrive replaying the moment, evaluating if I offended them, or they misunderstood me, or my timing is off.

I feel like I am interrupting most of the time. But what to do? This urgently important remark swimming in my head must be blurted out even before they’ve finished speaking, lest I forget it and deny the world of its brilliance. This weird need to belong is weird, isn’t it? But if a question is actually directed to me on the spot, a genuine request for my feedback or opinion? I feel cornered and cannot deliver. Many times, I think of a fantastically witty comeback or intelligent remark for the moment.. on my way back home.

Even (especially) if it is about topics that I care about deeply, or have spent a lot of time with. Or if I have watched a movie or read an article or attended an event I really enjoyed, or really hated, and someone asks me what I thought about it. It seems like the easiest thing, right? To just indulge what you think, your opinions, your preferences, your experiences? Wrong! My brain starts computing all the information I know all at once, all the feelings, past references, all that worked and didn’t, but without giving me anything concrete to work with in the moment. It goes into overload, and spouts out some vapid, superficial perspective on the matter.

Brain fog, some call it. It does feel like a hazy, stormy cloud. Not the kind that keeps you perched at the window, with a hot brew and a lazy melody. But which finds you in your Sunday best, and denies you a stroll in the park.

Granted, there may be added pressure I put on myself to successfully provide clarity, insights, and targeted factoids relevant to the discussion. Maybe I am putting others on too much of a pedestal as well. Therapy has told me there is so much secondary anxiety that comes in at these moments. I know the feeling. It hijacks my brain. I am acutely aware I am entering certain territory. The fear of being ‘discovered’ and not being able to say a thing. Not ‘passing’ anymore. My own mask being revealed to me. My inner critic being proven right again. A confirmation that I am actually ‘not enough’.

It really raises the stakes in my head to get an interaction right, to succinctly summarize what I felt about something and tie a neat bow around it, to be the right kind of charming, not too much, not too little, just right - in whichever interaction I have. Especially with really important conversations, like at work or going through something emotional with a lover or family member- I need to really prepare for it, but I rarely feel like I have not done justice to it.

More importantly, sans all the self-flagellation, it is just damn right frustrating to not be able to accurately communicate my experience of the world around me. It’s all we got, to make sense of the worlds we inhabit. And I feel it very deeply and honestly. Things matter to me, they feel significant, they stood out or did not sit well for specific reasons. Or it raises questions, on what was left out and what was unsaid. Like everybody else. I find it so difficult to express myself, but I have so much to say. I just wish I could share that at will, and in turn, make it more real for myself. And just be a more authentic version of myself.

Maybe if I felt lesser, if things mattered lesser to me, it would all be okay?

~

Shut downs are not fun. When I surpass my threshold of stimulation, and enter a state of overwhelm, it feels like I am my worst enemy. I get in the way of myself.

My battery completely drains out. I know what is required of me, or what I would like to do, or say, or how I would like to move. It’s playing in front of my eyes even, but I am not able to connect the dots. The circuits are just not linking. Like a child. Rather, a dull child. Muddled. Blank. Slow. My cup hath runneth dry.

I go really quiet. My lips get sealed. I feel hollow oceans churning in my stomach. I pinch myself, run my nails into my skin, because I deserve to feel the pain for not surviving this inane, everyday moment. My cheeks are flushed. I feel my toes curling in my shoes too.

And then the familiar, spiralling drone of the negative self talk begins. Putting myself down, so matter of factly. Wanting a hole to get formed in the earth, and for me to just disappear into it. A feeling of becoming very small, or wanting to become very small, and just fade into the background, lest I waste or interrupt a moment of brilliance amidst all the shiny, aware, awake, delightful, charming people around me. And for the ones who still choose to pay heed to me, I tell myself they are tolerating me due to some past grace, or just out of politeness. 

It is of course heightened if I am feeling emotionally unsafe, or caught off guard. But even in supposedly safe spaces, or genuinely affirming spaces, I can clamp up. It is a rare occasion where I feel truly safe, when I am feeling very grounded and confident and in a flow state. Not to say it does not happen. I know I have experienced it, I know the difference. But I also know it is rare.

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Another thing that pains me deeply is my poor memory. I barely have memories of my school or my childhood. Not just about my own life, but also facts about people’s lives, those who matter to me, or those who have touched me deeply. It often feels like I am starting over with them. Holidays, festivals, big celebrations or tragedies, first times, once-in-a-lifetime experiences, in my family’s or friends’ or lovers’ lives. They are mostly blanks being filled by people around me. Revelations of things I have done or said or experienced, only accessible to me through chance conversations with others, and their (im)perfect memories.

Of course, sometimes it is clear. and I am grounded. I have core memories that I seem to have retained. I have details about people that come back to me, that they forgot they even shared. I put in so much effort into ensuring nothing is lost or forgotten, to try and control for my unreliable brain, and ensure least loss of information. Especially the gorgeous memories, or the important memories. It is not that I am not sensitive to these experiences or details, or they did not matter much to me. I feel them deeply in the moment. But there is no guarantee it will be retained in my memory, even if it was meaningful. It has a very ad hoc process, and I am definitely not part of this selection committee.

Some things are experienced with a slight sense of overwhelm, that I am not going to remember it later, with desperate attempts to capture it as much as possible. Obsessive note taking. Too many photos. Or no photos at all. But I don’t know how much I am truly absorbing and retaining. Making my own, to be called upon later, as I wish.

The experiences that I do have, the things I consume, the conversations I am part of, I am present with them so vividly in the moment, and then they don't count for anything - they go into a black hole.  All I am left with is a phantom of what I knew or experienced. They are just lost forever. It’s like my life has not happened to me.

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I have felt this way for so long. I have worked with this feeling of anxiety in my psychotherapy for so many years. I have internalized it as just my personality. Like any self respecting millennial, I understood myself better through my meme algorithms. I have understood my anxiety as a response to past trauma from my childhood and adolescent experiences (but could never understand why it did as much damage). Or just my response as a woman growing up in a patriarchal, capitalist world that is designed to crush my self esteem (but I always felt I was a meek foot soldier in the feminist fight). I understood this rationally, but I could not truly accept it. I mostly felt I was somehow ‘broken’, and that I just did not get the memo. Of how to live, how to have fun, chill, exist, grow, thrive, or just be.

Now to discover that my anxiety is not just a trauma response, but coming from a different threshold of sensory and emotional stimulation, or executive need to account for all relevant variables, owning to a different neurology or physiology of my brain, is revelatory to say the least.

To know that I am neurodivergent is to:

- Finally believe that I am not invalid, and that I did indeed get the memo, but it was not the right one for me. The way I process the world and my experiences is different, and that is just the science talking. 

- Realise the amount of energy I am expending to ‘mask’, to follow certain social norms and patterns, to fit in, and consciously decide to ‘unmask’ and direct that energy elsewhere.

- Accept that my social batteries may drain out faster, and I may need to switch off or tune out sooner than others

- Understand that my past traumas or the looming patriarchy may have shaped me in lasting ways, which were further exacerbated by my neurodivergence

- Recognize that I don’t need to force myself to survive in unfamiliar, exhausting work environments, and they can be modified and designed for me to thrive instead

- Learn to not judge and criticise myself, but be curious about my response and the context, anticipate and honour my needs first, and acknowledge and support myself.

This does not mean it is all rainbows and sunshine now. I definitely still feel the weight of the dark cloudy haze holding me back. And I know it can be way more traumatizing and debilitating for other folks in the neurodivergent tribe. But I am also acutely aware of the ways that neurodivergence makes each of us sparkle in a different way.

For me, it is about appreciating how inquisitive and curious my brain is. Everything (most things) is interesting, and everything is so beautiful and lovely. I don’t have favourites. I might detest this about me on some days, but I love the flow of discovery it takes me on. My brain has an honest voice. I have a desire to cut the crap, be straightforward about the truth of the matter. I don’t like to gossip. I like to ask questions. I have a deep sense of justice and fairness and equity. I connect so easily with animals. The non verbal cues in intimate relationships hold meaning where words fail. I love tight hugs, and deep pressure massages.

I miss the obvious things at times, and get called a space cadet. Or I over-analyze details, and ‘miss the bigger picture’. But sometimes, I capture the subtle subtext between the lines that nobody else gets. I take things literally, but I also hold an unflinching reminder that words and commitments uttered at a point in time matter. Even if I have a deep desire to belong, or I feel left out, this has not tamed me into fear. I don't care for social norms or hierarchy, and am happy to go against the grain, if my heart feels so. My routines and rituals ground me. I am very happy to spend time in my own company.

This does not exclude the so-to-speak ‘quirks’. I detest white light, and since childhood, have hated crowds and loud sounds. I walk around barefoot most of the time, even in office. I have few friends, and like to find quiet, safe corners at parties. I fiddle with my hair a lot. I catch myself in online meetings covering my face with my hair. I blink an abnormal amount. I need to talk myself through the most basic math, and never volunteer to split the bill. I am bad with directions, and have no sense of judging size, or distance. I freeze at times with in-the-moment decision making, and sign up for things or experiences or purchases I know I did not want.

But I am learning to embrace these traits more. I want to tune into the sparkly side of my neurodivergence more. It is all about tuning into that unique sparkle, despite the unique challenges you may experience.

~

But the world does not make it easy for us. I do believe that we live in an ableist society. In social settings, in work places, or even in families, we assume there is one way for brains to work. Be it peoples’ love language, daily habits, working and productivity styles, consuming & processing information, even things like sensitivity to light or sound, or one’s idea of fun, or pleasure, or what’s funny - we assume there is only one way, and it is the common, majoritarian, neurotypical way of living and relating in our world.

If there is room for difference, our movies prescribe a certain pronounced, external difference you have to embody to be taken seriously. There is a fixed idea of what it means to be and look like if you are on the spectrum. And what happens after this acknowledgement? You are pitied, deemed unloveable, ostracised, villainized, exoticised, desexualized, dehumanized. You are treated as an inconvenience, or a ticket to the salvation of the benevolent.

For the rest, who are not neurotypical, and not extremely challenged in their neurodivergence, they are invisibilized.  They are deemed “not neurodivergent enough”. Many learn to hide their symptoms, or ‘mask’, to the extent that they may appear neurologically typical. So they are told their struggle is not as “real”. There is a subtle, insidious bullying, especially of those who let their masks slip. It is sometimes out of genuine lack of awareness, but sometimes just refusing to acknowledge that there could be another way to be. We like to make fun of or penalize those who behave differently, and exclude them in known and unknown ways. To think that this is actually some peoples’ idea of fun *shudder*.

As I go on my neurodivergence journey, is there anything I wish in the new year from the people around me? I hope that they can help me create space for myself in this ableist world. I don’t expect concessions, but I expect them to be a safe, kind, gentle space for me. Be sensitive to the difference in how I may be perceiving the world, and all its intended and unintended attacks and miracles.  Be a place to take refuge, be at ease, and come back to myself. And should they themselves be a source of trigger, to be a little patient and sincere in working through it. I would also hope that they educate themselves more, do their own research and homework, and be open and curious to learn more about those different from them- and maybe even themselves.

And on a human level, we can all constantly strive to be more sensitive, kinder, and accepting that there is no one way of living, and there is no one way to be neurodivergent. It is another lens to understand people better. An awareness of how unique & diverse we all are, and that all brains come with their own strengths and weaknesses, and that is totally normal. In our journey of celebrating diversity and inclusion, we have a long way to go on all fronts, but cognitive diversity often gets left behind. We must create a world that is inclusive of neurodivergence across its brilliant spectrum.