What Don’t We Talk About When We Talk Neurodivergence?
I’ve been reflecting lately on why I’ve been wary of writing more on SpLDs and neurodiversity — and why several of my peers felt the same. It’s made me think we need to be honest with ourselves and say there’s a lot of topics around neurodiversity and learning difficulties that we still don’t feel comfortable talking about, and why that is.
I’ve spent the last two years working out how to navigate things like adulthood, careers, workplaces and ambition, whilst also trying to build a reality that accommodated my neurodiverse, dyspraxic, inattentive brain. I’ve talked to many people on the same journey as well. I’ve realised that there’s all sorts of things we’re still avoiding addressing; subtle prejudices, biases to be unlearned, social expectations and norms that prevent us from adjusting what could be improvable circumstances. These all add up to persisting limitations that don’t allow us to reach our full potential.
Straight off, it’s not pleasant to start these conversations. It’s not pleasant to show your vulnerabilities to people, especially when you’re asking them to examine internal biases that they’ve likely not been pushed to before. Plus the lack of mainstream representation and understanding means you’ll be doing a lot of uphill educational work.
A lot of neuro-divergent people will not yet have much leverage in an organisation. Leverage comes in different forms; being able to speak honestly without fear of repercussions for your own career, knowing you have the credibility to raise issues and be taken seriously, or being in an influential enough position to make structural inclusive changes in a company, to name a few. But if you don’t yet have any of that leverage, then disability advocacy is a not insignificant responsibility to take on — not necessarily an easy place from with which to start a hard conversation about barriers.
If you don’t yet have leverage inside an organisation, disability advocacy is a not insignificant responsibility to take on — and that’s not an easy place from which to start hard conversations
Barriers that can be as simple as not being able to get to meetings on time because you get so lost in a building you’ve been in a million times before, or your clumsiness and propensity to spill coffee all over yourself making you seem more dishevelled and less professional than your peers. Or you’re late for your first day because you couldn’t read a straight line on a map and circled the complete wrong address three times. Or it’s bigger, like your challenges with structuring your thoughts and breaking them down leading to colleagues making fun of your poor communication skills.
Or it’s being so easily distracted if you’re put in a sensory-stimulating office that you’re slower to get your work done. Or it’s your slow information processing speed meaning it’s taking you ages to understand a set of numbers that everyone else picked up at first glance, leaving you left in the dust. Or if your poor motor skills and weak auditory memory mean that your written notes after being told a set of instructions are unusable. Or challenges with grammar, spelling, and sentence structure suggest you’ve not put effort into written work when in actual fact you’ve probably had to work twice as hard on it as the next person.
Or it’s the anxiety that comes when all of these compound, and you think that, maybe, just maybe, you don’t deserve to be there, and stop putting yourself forward for anything — or stop talking and trying entirely.
All of the above are just a couple of instances of hundreds of examples I could share. And any of them might sound minor on their own, but imagine experiencing any 5 of them in one day, every day of your life, and you might get a sense of how exhausting it all is. (I’ve personally never felt anything quite like knowing I could work twice as hard as everyone else, and still not see the same results, because of being trapped in a frustrating body and brain that doesn’t want to do what you tell it. Dyspraxia burnout is very real, as is the mental exhaustion that comes with it.)
But if these barriers are so significant, what stops us from talking about them more? A lot of it still comes down to trust. When I left university, I made a commitment to myself that going forward I would be transparent about my disorders, after a lifetime of either being unaware of it, ignoring it, or pretending I could work through it, left me deeply battered and burned out. It’s easier said than done. I was quite bruised by the comments I’d gotten at uni from people who weren’t interested in educating themselves, and stuck to the typical “don’t use it as an excuse to be lazy” lines — and we all have these stories, that are always niggling in the back of our minds. If I tell someone about it, is the stigma still there? Are they going to be interested in the adjustments that can make you perform really highly or do they dismiss it out of hand?
When you’re ambitious and want to think big, do you have enough trust in the people around you to publicly express that vulnerability? When you’re trying to establish a reputation, and perhaps your industry doesn’t recognise your disorders very well, do you have the confidence to be open about your needs, or are there no signals that give you that belief? Do I just get my head down and work twice as hard instead, and hope that those around me will just notice the quality of my work and not pick up on my differences? (NB: I attempted this more times in my life than I care to admit, and it categorically does not work. You will burn out if you do this.) It can be intimidating. You don’t really know who’s going to be dismissive. I’ve spoken to friends about this topic who’ve confided that they’d never share their experiences in online or public spaces because they’re too uncomfortable of that being in the public sphere whilst they’re still establishing themselves, for concern of things being taken the wrong way.
Yet by doing that, we give ourselves a dearth of resources and community that could be a really valuable tool in opening up peoples’ minds and make it easier for others to pick up on the invisible barriers that many face every day.
And without that, we will always have these challenges of being able to trust the people around you to be willing to engage with these conversations, to trust that they’re going to have enough introspection to listen to what you have to say — when people still have really minimal context on learning disorders. It becomes a catch-22.
It makes it hard, for instance, to highlight that some professional norms don’t translate particularly well to some neuro-divergent characteristics. Things as simple as, autistic people being able to leave a meeting suddenly because they might go into shutdown, without questions; needing to stim or respond to certain textures in the office; or not being read as rude if they avoid short talk or extensive eye contact amongst colleagues.
The wariness around seeking support is compounded by that knowledge that, as soon as you disclose yourself, you become your own full-time advocate.
And I think this is another crux of what prevents many people being more vocal about their disorders and differences. It’s very unlikely that anyone around you is going to take on the responsibility of educating the rest of your colleagues about your special adjustments, and its even less likely that anyone above you is even going to have the requisite knowledge to advocate on your behalf. So if you ask for support, the burden of explaining all the intricacies of these not very well understood conditions, and how environments and workplaces can be unknowingly discriminatory, and need to change to adapt to what can be some of their most talented employees, falls on you, for the entirety of your duration of employment. And that’s a big job, when sometimes, you just want to do your own role and succeed. You’re not being employed to be a full-time disability advocate, and you are not being employed to sort out your company’s neurodiversity problems.
And that’s a big job, when sometimes, you just want to do your own role and succeed. You’re not being employed to be a full-time disability advocate, and you are not being employed to sort out your company’s neurodiversity problems.
There’s a difference too, between just making your workplace aware, and getting your workplace to proactively understand. And that takes time, and consistent effort, and patience, and again, you are likely to be the one to exert the effort, and force people to listen.
When I wrote about coming to terms with a diagnosis two years ago now, several of the people who reached out to me to say how insightful they found the piece, were still the people making fun of me for always losing track of my thoughts and getting confused and muddled when I was talking. It was upsetting at the time, but in hindsight I’m not annoyed. We exist in a society where this conversation is still far on the fringes, and I think most neurotypical individuals are still so early in their understanding of these disorders, that they’re not yet capable of making that leap to proactively spotting these patterns. But again, it puts more onus on neuro-divergent people, who are often still in less influential positions, often still figuring out themselves and what works for them in the first place, to be the continual educators of their superiors.
It’s easy for someone to tell you they have ADD, and that it affects their work, but it’s much harder for teams to spot the patterns when you’re struggling to follow in a meeting that’s going on too long, or context-switching between a million different topics, unless you flag it to them. For instance, I really dislike long meetings that are trying to cover too many things at once — I get lost and struggle to stay comprehending many changing topics without getting the opportunity to take a break, exercise my mind, etc. I also don’t like having to come up with solutions on the spot — my brain takes a while to process material, and I prefer having the time and space to go away and have a think about the issue before coming to a conclusion. And over-sensory stimulating workplaces are the antithesis to me getting anything done.
But it’s up to you to be the one continually flagging these needs for adjustments, and depending on how inclusive your workplace already is, you might be doing this a lot, and that can take nerve and self-conviction, that not everyone has yet. When that compounding anxiety I mentioned above is affecting you, are you going to have the conviction to continually educate and speak up and ask for help? And there’s a self-consciousness that comes with being the one to consistently highlight this and ask for adjustments — a niggling feeling that, perhaps, if I’m the only one struggling with this all the time, and no-one else is talking about it, perhaps I don’t deserve to be here. It’s not just telling people once. It’s telling people regularly, until they slowly start to join the dots themselves, and that can take a long time.
Of course, some environments possess less empathy than others, and when you do ask for an adjustment, you’re opening yourself up to the risk of being ridiculed. Go on any online support forum and it’ll be overflowing with stories of discriminatory workplaces, universities, or public services. (Last week, the Royal Mail were ordered to pay compensation for disability harassment.) I once said to a group of people that I have a slow-processing brain, and can take a while to understand information, and someone present began unsuccessfully stifling laughter. I once said to someone else that I hadn’t been able to learn to drive because of a neurological disorder, and they laughed, and told me to stop making excuses. In general, though, people are normally very empathetic when I’m explicit with them, but not everyone is so lucky.
It’s easy to see why so many people withdraw — from careers, from opportunities, from communities — before getting the chance to realise their potential, instead developing anxiety and self-esteem problems.
No one likes being laughed at. If there’s a chance of being ridiculed or underestimated, many would rather suffer in silence. Because who has the gall to have big ambitions and big ideas, when you’re both ridiculed and underestimated for simply existing and being who you are? If there’s one thing I want anyone with an SpLD reading this to take away, it’s that you are not silly for having ambitions, and you are not stupid and undeserving of aspirations. It’s really easy to lose conviction in yourself when you feel like the only one fighting a corner that no-one understands — unfortunately a lot of us have spent a long time in the exact sort of environments that inhibit our confidence and ambitions.
If there’s one thing I want anyone with an SpLD reading this to take away, it’s that you are not silly for having ambitions, and you are not stupid and undeserving of aspirations.
I don’t have a single conclusion from the thoughts I’ve shared above. But I do think it’s worth reflecting on how numerous the barriers ahead of so many of us are, and how we don’t talk about it being more difficult than just speaking out. It’s about the need to speak out repeatedly, sometimes constantly, and the minefield that you open yourself up to, when you don’t necessarily yet have the leverage or self-confidence to believe that you can take on this advocacy role. Or that our understandings are still so raw that even people who are outwardly empathetic will jump to negative appraisals, unless they’re held to account.
It will take a willingness to critically engage with how you interact with others, an ability to assess if you are inadvertently making non-inclusive environments, and taking responsibility for seeking out and educating yourself, not putting the onus on disabled people to educate you. And I don’t think we’re at that stage of the conversation yet.
