Why explaining my neurodiverse brain has been the hardest thing

How big is the brain? Who knows—even our best efforts to calculate its  capacity are flawed and meaningless.

I’ve been reflecting a lot recently, and more so since my ADHD diagnosis almost two weeks ago at the age of 31. Something I’d contemplated being a possibility for quite a while, after reading about intelligent women, holding down professional jobs, but seemingly drowning in everyday activities that everyone else does without a second thought. I was, despite all of this knowledge, and being around in the neurodiversity community for several years already, still hit hard by this new diagnosis and wondered why it hadn’t been picked up earlier, that I’d been dealing with untreated ADHD for so long, somehow still gaining two Masters degrees and being able to make it to India and back at the age of 21. I only got the application in for India after a night fuelled by hyper-focus and I remember my undergrad dissertation running on red bull and several all nighters, not advisable if you can help it. On the outside for those who weren’t a fly on my wall, I looked very together, I was clever, had lots of education under my belt, developed a good circle of friends, appeared to have a plan and in later years was always travelling up and down the country having a jolly time. But this you see, was also the problem.

When I was seven and first diagnosed with dyspraxia, neurodiversity was a word no one had really heard of, it was first coined in 1998 by Judy Singer, and only became a commonly used term much later than that. As a child everything I struggled with was pulled apart and examined, mainly physical difficulties and educational attainments. Executive function was another term I became aware of much later. It made sense, with this focus on my failings and difficulties at school, that I wanted to focus on everything I could do well as an adult. I’d been examined and tested more than the average young person, and became acquainted with most professions from psychiatrists to neurologists and OT’s, so by 16 I wanted a break and to be left alone, to do my own thing. And doing my own thing worked for a while, as most people in their 20’s are a little bit chaotic so I blended in just fine, finding ways to hide my inner monologue of chaos or laughing things off when actually I really struggled, and wished someone would understand.

We’ve come a long way in understanding the neurodiverse brain, more people have been speaking out online about their different way of being and experiencing the world, and this is really reassuring to see. It helps if you’re newly diagnosed, or diagnosed young but still don’t understand your brain yet. It makes you feel quite a lot less of a freak and in some ways normal, or good enough. It make us, as the neurodiverse squad feel that we belong, or fit in somewhere. We are able to explain why something happened or why we reacted in a certain way, as I realised after my ADHD diagnosis assessment. This new found community is great – it really is – but it doesn’t help when sometimes, having a conversation is one of the hardest things. We can talk amongst ourselves till the cows come home, but we all get it. The people who don’t quite understand are those who need to be involved in these conversations, and that isn’t always an easy task.

Over the last few years I’ve tried to navigate adulthood, build a career, work out what I want and where my brain fits, I’ve stumbled across several things and the ADHD diagnosis has made much come to the fore. Firstly I am a woman, and as a woman expectations are put on me by society that say, my younger brother doesn’t have to justify not meeting by a certain age. As a woman we are meant to organise everyone else, alongside ourselves. Moving out is expected, children, relationships, running a home. If you choose to be single, people don’t understand why. If one of your primary difficulties is organisation, I’m sure you can see the problem with the expectations to be organisation queen, cooking a three course meal, whilst breast feeding a baby and applying for a mortgage. I struggle to focus in work zoom meetings most days, so moving away from the North East, despite wanting to, is the equivalent to climbing mount Everest with a cow on my back to me. Exhausting. A male colleague once said; “I can’t multi task because I’m a bloke,” expecting me to pick up his work, because I’m the opposite gender and would clearly cope fine. A former boss commented on my personality and suggested “I change” because my Myers Briggs profile wasn’t what she wanted in her staff team. I didn’t change. She hounded me for months until I finally left the organisation. There will be more examples like mine, subtle biasses and prejudices because our brains don’t fit in with the expectations of society. And it’s often difficult to challenge people, and talk about some of the most intimate details of our lives to explain yourself, and justify why you can’t do something the way someone wants or expects. I kick myself often, when I wish I’d just opened my mouth and said something.

I’ve had mixed responses following announcing my ADHD diagnosis, some have been pleased and supportive, others have remained silent and the rest have expressed pity. Some people are so used to me writing about dyspraxia and neurodiversity online, that ADHD is just another thing that doesn’t warrant much attention. I haven’t got round to explaining it in an employment situation, and I’m unsure if I will for a while. Most people assume the stereotype that ADHD is something that affects hyperactive boys, and have no idea how it can manifest in women, so explaining that will be tough. I haven’t even got round to doing much of the explaining to people closest to me yet. As a child I was embarrassed by even the mention of the word “dyspraxia”, it carried with it connotations of failure and not being like everyone else. There was much internal and external stigma about having a disability too. As an adult I’ve carried with me some of that embarrassment but also realised it’s often about not wanting to express your vulnerabilities in front of other people ALL OF THE TIME. Explaining your dyspraxia or ADHD or neurodiversity, will mean in some ways exposing those vulnerabilities. I’ve lost count of the times when taxi drivers have asked intrusive questions meaning I would have had to expose details of my medical history, I even went along with one assuming I’m much younger than I am, because explaining that I’m actually in my 30’s and not where he expected me to be in life felt too painful. After years of trying to fit in or hide where we struggle, shining a spot light on being vulnerable isn’t something many neurodivergent people are comfortable doing. And that’s okay. Before I started a day in the office, in the days before Covid and working from home, it often felt like I’d done a days work before I’d even begun. Getting out of bed was often a struggle, after a night of little sleep, because my brain doesn’t easily turn off. Everything I’ve done that day, or forgotten to do is always going round in my head on repeat. I’m knackered before I’ve even had breakfast or fed the cats, even before I’ve worked out the order to get myself ready in the morning and allowed enough time to get out of the door, making sure I remember my phone, purse, keys, work phone, lanyard and office keys. My brain is already overloaded as I set foot in the office. So, I can see why sitting quietly, and getting your head down, rather than explaining all of this is preferable to most of us. Appearing chaotic and struggling to meet deadlines or remembering appointments often means we have somehow failed as a woman. Until we read up on inattentive ADHD in women, then we realise that our perceived failure is very much not the case.

When I turned 25 and I left university for the second time, after almost failing an MA, I made it my mission to be as vocal as I could about my difficulties, after years of hiding it away and pretending being dyspraxic didn’t exist. I disclosed at work, on application forms, to friends and on another volunteering programme overseas, and experienced discrimination, stigma and ridicule because of this. I felt judged, that my life was on show. And instead of my abilities being judged by what people didn’t know about me, the opposite happened, assumptions were made because people knew I had dyspraxia. I learned the hard way that being open isn’t always the best way. You only have to look on Internet forums and Facebook groups, to see experiences similar to my own. We are told to disclose, be proud of who we are, educate people, and when we do many neurodivergent people are exposed to trauma that takes years of therapy to heal. Sometimes having a conversation is the worst thing we can possibly do. Some spaces are of course safer than others. Boundaries are only something we develop a deeper understanding of as we get older, and our responsibilities change.

In the future I hope that conversations are made easier for all, that neurodivergent people don’t have to do all of the explaining and that everyone else will make it their mission to learn, to try and understand. And if they don’t understand, to admit this, rather than assuming things far from reality. As a dyspraxic with ADHD in the mix too, I’ve realised that explaining my brain should come at a time, where I feel comfortable, in a space that it is important for others to know and when fear of discrimination or assumptions don’t outweigh the benefits of having that conversation. Starting a conversation is tough, but finishing it is even harder. And if your friend/relative/colleague feels safe enough to express their vulnerabilities, it says a lot about their ability to share with you. Make sure you really listen, that conversation will be on a loop in their head for a while after. Working together is the only way we can make having and initiating these conversations less of a mountain to climb.

I’ve written this piece because I’ve felt overwhelmed by the pressure to explain “why” over the years, the pressure to fit in and the instances where I’ve found myself laughing with others at something directly linked to my ND brain, because it’s sometimes easier than the alternative. I’ve worked out when I do and don’t want to share or announce my difficulties, but I’m still not quite there and the ADHD diagnosis has knocked things off kilter again. We’re all learning more about ourselves and finding spaces to feel included. When inclusion works, it can be one of the most moving and powerful things. The circles I’m in offer that feeling of safety and understanding, but away from these circles having a chat about your brain becomes more tricky. We’re all learning. Accepting a diagnosis has been easier the second time round, and I know, however much or little you are able to explain your neurodiversity, it will all be okay in the end.

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