Being different: neurodivergent
Sometimes it can be quite challenging when you deviate from the norm, when you are 'different'. Even more so when the actions and inaction of others emphasise your difference. In this post I want to try to give a glimpse into my life and how I experience this. Please note, this is only my experience. Others will have a different experience.
This is my second post about #BeingDifferent, and I plan to write more posts in the future about various themes where I deviate from the norm. I invite you, if you experience being different or being seen as such, to join this initiative and also write about your being different, so that we can all learn from each other, including those who fall within the norm.
People have always known that I'm weird or different. Perhaps not consciously, but at least somewhere they have a feeling that something is off. For a long time, I lacked the words to describe this: I am multiply neurodivergent.
One of the consequences of this is that I have difficulty connecting with people, and it's even harder to build and maintain friendships. At school, I was almost always an outsider with few, if any, friends. What I learned during that time, through the actions of my classmates, is that my value is derived from my qualities. Choosing teams during physical education meant being one of the last to be picked, unless there was a strategic advantage to having me on the team. The same applied to group assignments: always being picked last, except when a classmate needed to raise a grade and then hoped to piggyback off my effort. I still only have few friends. Most of my friendships were formed online, so my friends rarely live nearby, if they even live in the Netherlands at all.
The fact that I started to derive my self-worth from what I have to offer, whether that's knowledge and skills in school, at work, sports skills, etc., led me to have high expectations of myself from an early age. I found it difficult to settle for okay and therefore strived for perfection. If I performed well enough, people wanted to spend time with me, so that's what I did. Naturally, I developed an aversion to ambiguity and contradiction and learned to analyze, ponder, and ask questions to ensure I understood assignments properly, so I could execute them perfectly. More on this later.
The worst part is, no matter how hard I tried, as soon as the assignment was over, I was forgotten. And during project work, I was still the odd one out, which my fellow project members (unconsciously) let on. So I also started refining my interactions. I started scripting conversations, devising scenarios to be able to respond quickly, and after each interaction, evaluating what had gone well and where I could improve, thus improving my scripts. Not only did I start scripting conversations, I also started anticipating what was expected of me, how others would react to my behavior and statements, for fear of being rejected or excluded. Scripts were no longer linear but became increasingly complex decision trees to support me in following the flow of conversations. Despite all the effort I put in, I could never get it right. Never realizing that my experience differs from the norm. It seems so easy when I see how others make conversations.
As I understand it, it is easy for my neurotypical peers. As far as I understand, they don't have to put in much effort to, for example, have a conversation. They can easily follow the flow of a conversation and pick up verbal and nonverbal cues without even having to think about the verbal and nonverbal cues that tell them what's appropriate behavior. I, on the other hand, miss these cues and therefore have to constantly pay attention to know when I can speak, when I should stop talking, and so on.
I probably don't need to emphasize how incredibly tiring it is to constantly be aware of the signals others are giving in every interaction, trying to read them correctly, and then adjusting my behavior accordingly. Every day, every interaction. These experiences aren't limited to my time at school, by the way. Since I started working, I've repeatedly received feedback on my communication, urgently requesting that I improve. The only option I knew back then was to keep refining, scripting, and analyzing. And if I misjudged a situation, I found that people would accuse me of not trying harder. Fortunately, there's more understanding in my current team and my experiences have improved.
The constant questioning I mentioned earlier is something I developed after many negative experiences. I can't possibly say whether it's about ambiguity or contradictions, as I mentioned, or whether it's a result of recriminations, missed opportunities due to, for example, miscommunication or unspoken expectations, or the high standards I set for myself, or whether it's simply part of my neurodivergence. The thing is, I just want to understand things, and it's often important to understand something to even get things done. By this, I don't mean that I have to understand how I do something, like everyone else does, but that I have to understand why I should do something or why I have to do it a specific way. When I don't understand the why, I just don't manage to do things (the desired way). Experience has shown that asking questions like I do can be interpreted as questioning someone's knowledge or authority and too often it's seen that way. Instead of these assumptions being verified—because that's what they are—I'm being criticized or told at a later moment that I "just have to" do tasks or that that's "just the way things are." That's not how my brain works.
So far, I've only talked about interpersonal challenges and their consequences. However, these aren't my only challenges. There are also many social expectations that are difficult or unpleasant for me, resulting in me having to choose between two evils: accept the consequences (such as taking reproaches, losing friendships, being excluded) or push on, mask, and then later suffer the consequences (such as overstimulation, needing days to recover, panic attacks).
This already starts in school. Many school systems are based on the assumption that everyone in a class meets a certain average level, while those who excel in a few subjects or struggle in others have to fend for themselves. It's assumed that everyone who follows a certain path will be more or less equally successful in the next period of their education. School, even my university of applied sciences, provided quite a bit of structure through schedules, curriculum organization, and by specifying what homework was due when. My parents supported me in planning homework. Excelling in a few subjects only meant that I sometimes took on extra-ordinary or particularly difficult assignments, or that I entertained myself with a book or a puzzle for the remainder of the time. All in all, I was able to keep up well in primary and secondary school and things also went well in later education, until I started an internship. While the structure and support had previously compensated for my poor executive functioning, now high demand was placed on personal responsibility and executive functioning. Looking back on that period, it's a miracle I ever earned a higher professional education degree.
Other challenges include afternoon drinks and networking events. There's often an implicit expectation to participate, but because of the challenges described above, it's difficult, if not impossible, to attend. Because I don't know the social scripts, it's hard to connect with people. Because it's noisy or the music is loud, there are too many stimuli. To appear sociable and open, I'm constantly mindful of my posture, where I sit or stand, where to place my hands, whether I look interested, whether I stare or daydream, whether I... If I do manage to strike up a conversation, the challenge is to show the correct type and right amount of interest. Do I look at someone, even though making eye contact is painful? How do I make small talk, and when can I talk about topics that are actually interesting? When can I speak, do I not ramble on, do I give others enough space to talk? And all of this when often I want nothing more than to escape or play a board game with a few people to connect that way.
These aren't the only causes of overstimulation, by the way. To be clear, overstimulation isn't simply solved by removing stimuli. That only helps reduce the risk of overstimulation. Overstimulation builds like a bucket filling drop by drop. It's often only when the bucket starts to overflow that I recognize I'm overstimulated, except it feels more like a candle burning out or a bomb exploding. The contradiction in that statement is all too real. Everything within me screams for attention and rest, and yet at the same time, I can't even manage that. Another contradiction is that when I leave work feeling overstimulated, I'm tempted to walk to the store to buy snacks, which is very stimulating, while it's actually best to avoid those stimuli.
If I don't pay close enough attention to my body's signals, or don't have the opportunity to respond adequately, it can have unpleasant consequences. Stimming, which often takes the form of repetitive actions or deep stimulation, can help regulate my stimuli, but due to prevailing social norms, this is something I've been taught to suppress from a young age. No fidgeting or rocking back and forth in my chair, but sitting still, no chewing on my pen or pencil, no tapping my fingers on the table or my foot on the floor, and so on. The more I have to mask and the longer I'm exposed to unpleasant stimuli, the harder it becomes to regulate myself. The only thing I can do in the most extreme cases of overstimulation is to remove the stimuli—preferably going to a quiet, darkened room—possibly adding controlled stimuli—for example, a weighted blanket or noise-canceling headphones and specific music—and rest, which is hard to do at work.
Stimming is something I do—or want to do—when I'm overstimulated, but also when I'm understimulated, like during meetings, for example. The longer I'm understimulated, the worse it gets, and the more stimulation I need. Then small things like the ones I mentioned aren't enough anymore; I have to exercise, for example, or turn on my music at high volume and dance. Both understimulation and overstimulation are a sliding scale, where I panic when I can't control my stimuli (overstimulation) or despair when I can't release my energy (understimulation). I sometimes compare it to diabetes: signals are difficult to recognize unless you're trained and aware of them, both extremes are harmful, and, well, both extremes can require help. Overstimulation leads to a crash after which I can't do anything but rest, whereas overstimulation makes me want to scream and punch walls, which I compare to a bomb exploding.
Everyone will agree that the latter scenarios are undesirable and should be avoided. Yet, society and many companies, conferences, and other venues fail to provide for this. Many companies, schools, managers, and teachers don't offer space for stimulating and desensitization and (unconsciously) expect conformity to the neurotypical standard. The only place often available for someone to retreat is the restroom, and that's not exactly a pleasant space for desensitising.
The last thing I'm going to write about my experience as a multiply neurodivergent person is a bit nerve-wracking, because few people know this about me. I sometimes become nonverbal. Fortunately, I've never experienced this at work, and I don't know how I would handle it if it were to happen. While with my partner I only need two gestures to communicate this, after which we're perfectly happy to pick up our phones and continue communicating via text, I don't see this happening at work. I recently asked about this during a webinar "Communication Strategies for Neurodivergent Adults," and the host replied that when this happens to her, she uses a text-to-speech app on her phone. This might be an option, but I haven't been able (nor needed) to try it yet and I'm not convinced it will work for me, given the delay I experience when typing things out and the fact that I'm much stronger verbally than in writing.
Neurodivergent
Who could be my savior
In this society we live in
I am weird
I am the outcast
I can't seem to fit in
All those expectations
Who can set me free?
Yes I know
I'm not alone
There are others like me
Doesn't make it right
Still I have to adjust
To the norm
I must conform
Only way to earn their trust
The biggest challenge as a neurodivergent person is to be honest with myself, to be authentic in a world that demands conformity, that expects me to mask and conform to the neurotypical standard, no matter the cost. Now that I know about my neurodivergence, and I'm becoming increasingly aware of the cost of masking, my challenge is to rediscover my authentic self. What makes this especially difficult is that after more than 30 years of masking, I often don't realize when I'm doing something because it's authentically me or because it's to keep myself safe. I've become so adept at many of my coping mechanisms that I'm unconsciously competent, meaning I no longer identify them as such, and they harm me more than they benefit me.
My wish, and that of many neurodivergent people like me, is that I no longer have to conform, but that I can simply be me. That I am no longer labeled as a problem—almost all neurodivergences listed in the DSM end with disorder—but that I am seen as worthy, as a person of value, and that we figure out how we can restructure society to better meet, among other things, neurodivergent needs, just like we do for, for example, people who are left-handed or nearsighted. That we ask, "What do you need?" and meet those needs, just like we provide a left-handed person with a different pair of scissors instead of telling them to cut with their right hand, or how we offer someone who is nearsighted glasses or contact lenses instead of telling them to look harder. What I would like is for us to abandon the pathology paradigm and embrace the neurodiversity paradigm, where we stop asking people to conform to the neurotypical standard and instead accept, embrace, and support diversity. For more information on this, see this article on neuroqueer.com: Throw Away the Master's Tools.
What I'd like is for us to treat everyone equitably, so everyone has an equal chance. Not to treat everyone equally (everyone gets left-handed scissors), but equitably (everyone gets scissors that match their dominant hand). Not to give everyone glasses with a correction of -3, but to provide everyone who benefits from having them tailor-made glasses or contact lenses. In short, to provide everyone with the support they need and in a way that suits them. Some things can—or should—be addressed at the individual level. Take sensory sensitivity and overstimulation as an example. To accommodate for this, someone could be provided a small office or an office of their own, to be allowed to work from home, and use noise-canceling headphones.
Other issues can only be resolved within a department, company, or society at large, and often many people benefit from these adjustments. People who have difficulty processing information, for example, benefit from meetings being kept short and information being available well in advance so they can read up on the subject beforehand, ask questions if necessary, and think about the topic before it's discussed. Holding a meeting online, supported by chat and automatic captioning, offers opportunities for people with speaking challenges and provides more opportunities for those who often don't get a turn at the conference table, for example, because they speak softly or have difficulty figuring out when they can speak, by allowing them to respond via chat or raise their hand digitally. These adjustments benefit almost everyone, and for those for whom they don't add value, they generally won't make a difference.
This impacts facilities at work, in public spaces, and at home, and also how we interact with each other. This isn't just about neurodivergence, but about leveling the playing field so everyone has the same opportunities and where those who are disadvantaged are accommodated. One initiative currently working to make (public) spaces more accessible is the Hidden Disabilities Sunflower. People with invisible disabilities, including neurodivergence, can purchase a card with a lanyard to communicate that they have a invisible disability and (may) need additional support. They offer organizations information on how to meet support needs. Initiatives like these help people like me participate more fully in society, and I sincerely hope that more and more organizations will continue to join.
Dreams
Could we reshape this world to allow us to be?
To live our lives and follow our dreams
Would you listen to us and refuse to judge?
Would you find labels when it all gets too much?
Would you stand up for us and learn all the time?
Would you reject discrimination and keep up the fight?
Will you accept and support us and join in our mission?
Will you stand with us and help shape our vision?
To be truly accepted supported and seen
Can this become real and not just a dream?
This piece turned out much longer than I expected. I planned to also write about neurodivergent burnout, but due to the length, I decided against it. Perhaps I'll write about it in a future post.
If you've been reading this blog for longer, you may have recognized the poems in this article. Both of these have been previously published on this blog, though the second one has been formatted slightly differently.