Neurodivergent: Real Stories #6
What’s it really like to be neurodivergent? What’s it like to have ADHD or high sensitivity? How is it to live with epilepsy or Ehlers-Danlos Syndrome? How does it impact people’s work, relationships and sense of self?
In this series of interviews we hear from real people, discussing many aspects of their neurodiversity. I hope you enjoy their stories and through them find deeper understanding of yourself and others.
Please note that the following interview contains swearing.
Interview #6
University lecturer, received diagnosis of ADHD in late teens and diagnosis of dyslexia & dyspraxia in early 30s. Diagnosis of Asperger’s pending
How do you define your neurodivergence?
I have ADHD, which was diagnosed when I was 17 years old. At that time, I was living in my home city and I was walking through the railway station in this remote area outside of the city. There was this corporate building and different things kept happening there. I was always quite interested to see what was going on. One day I saw there was this big poster outside saying Special Needs Education and it said, “Get yourself screened - understand your strengths and weaknesses”. I always really liked those kind of things to help me become more aware of myself so I decided to go in. It was a free assessment, plus of course there’s the “Freemium” element, because they offer something for free and that obviously makes you want more. I remember that somehow I had saved some money back then and they charged me 500 rupees (the equivalent of about £5) to do a proper assessment. I don’t think they even called it screening back then, but they found a few things out and they made me do tests etc. And then, I was diagnosed with ADHD. It was just a fun thing to do, because in India there was literally no understanding, no awareness, of how do you follow this up? How do you reflect it in your education system?
Recently, I had my screening in the UK. It turns out I don’t only have ADHD but I have really severe dyslexia and, even worse than the dyslexia, I have severe dyspraxia. I have sharp contrasts in my profile - in some I am in the bottom 0.3% of the population, which is terrible, and then in others I am in the upper 1 percentile, which are my strengths. The dyslexia and dyspraxia came to me as quite a surprise. I knew that maybe I had a bit of minor dyslexia but to find out it is very severe… It affects my motor skills and coordination, hand-eye coordination and awareness of my space in general is really poor. It affects my sense of direction - left, right, signals. Binary constructs I just find very, very challenging.
My GP looked at my report and said they are almost sure I’m somewhere on the Autism spectrum, too. So, I was referred to an Autism/Asperger’s organisation, who got in touch with me immediately and asked me to fill out a screening questionnaire. Based on that they might call for a full assessment. I sent the screening questionnaire back and they instantly replied, saying they want me to come in for a full assessment because my screening has come out positive and I am showing very strong signs of ASD. So, there is that as well, potentially! But I don’t know, because it’s not been confirmed yet. Since that’s happened, it’s made me more aware of other things I didn’t even think I had a problem with. When you become aware of something, then you increasingly notice it because you have a label for it.
How did you experience finding out about your neurodivergence?
Horrible.
I think people go through the stages of grief receiving these diagnoses. You actually go through anger and denial and everything else, and then you get to acceptance. I’m not at acceptance yet because it’s all been quite recent. And maybe I’m going to have Asperger’s and that’s cool, but it throws off my understanding of myself. I don’t know if it gives rise to some sort of mid-life crisis! But here was my understanding and my image of myself that I have developed and that I have had all my life… and then I’ve received these diagnoses, which changes all that. Having the ADHD formally diagnosed wouldn’t have changed anything for me - my life would have just gone on because I’ve always known about the ADHD. But the other stuff, like slow visual processing, slow processing speeds, low something else, and then the dyslexia and the dyspraxia, and now the Asperger’s… that doesn’t just affect my work, it affects my personal relationships too. It makes me question how much people are going through by interacting with me or having a relationship with me, whether that’s friendship or my partner or family. And I just feel like, “What have I subjected people to?” and it makes me really sad knowing that they’ve probably put in so much more effort than I have into our relationship. It just makes me question every single thing.
I’m really lucky because I have a colleague who has always been like a mentor. If I didn’t know them, I’d probably be in a really, really bad state of mind, because I wouldn’t know what it means and what happens next. My mentor has done well in their career and I am ambitious, I am very ambitious. But, I think, the first thing it did was make me feel like I’m inadequate. When there are scales and I’m at the bottom of this one and the bottom of that one, it makes me feel very inadequate. I’ve always felt like I’m an imposter. I achieved some senior positions when I was in my late 20s and I always felt like I’m not good enough, because I’m working with much older people, who are more accomplished, more experienced. Now this has happened, it amplifies that feeling a bit more. It’s not great, finding out, but I’d rather know than not know.
Everyone ambitious feels inadequate sometimes by Matt Brown
In Divergent Mind, Jenara Nerenberg makes the case that all neurodivergence is linked by sensitivity. How would you describe yourself in terms of sensitivity?
I hate musicals! And people find that very surprising! I cannot stand musicals, and that’s not because I don’t like a celebration and music or anything, it’s just too much. Too much going on. I can sit and watch a 3 hour stage play, well, I’ll probably watch 20% of it, I’ll zone in and out and in and out. But I won’t find it jarring and annoying. In musicals there’s the orchestra playing and it’s too much. Even if I went to a music concert, where there’s just the audio and people playing, I would go to see a solo or trio performance. As soon as it’s an orchestra I’m like, “Uh-uh, I’m done, I’m out!” because there’s so much going on. I’m good with patterns and I recognise patterns very easily, so if I listen to music I’ll very easily be able to understand the tempo and beat. What will really screw with my head is when there is an orchestra and there are too many things to focus on and try and make a pattern out of - that’s a lot of energy. In a musical, there’s the music going on and people dancing and jumping around. I hated The Lion King and people thought I would love it. I can see why people would think I would love it, but I really, really disliked it. I had so many people saying, “Who hates musicals?” but it’s just too much going on.
Sensory overload, I do not like. But, there’s something very interesting that I discovered a few weeks ago. This is a very contrasting thing I am going to tell you, because sometimes I feel sensorily deprived. It may be because I grew up in a huge city with a lot of action and buzz around me and right now I live in a place that can be really silent. That can sometimes make me feel quite upset and almost lonely because I don’t feel like I have enough stimulation. After the restrictions eased, I went to the gym where I enjoy being in the jacuzzi. On this day, there were 8 other people in the jacuzzi with me and there was the swimming pool next to me, where there was an Aqua Zumba class going on and the music was really loud. And there were people around everywhere, yelling, there were kids, etc. And I absolutely loved it, it almost brought tears to my eyes! I was sitting in the jacuzzi and thinking I really feel so sensorily deprived sometimes but, right now, I want sensory input. Physically I had the sensations of the jacuzzi, socially there were people around me and there was loud music playing to the stupid Aqua Zumba thing people are doing, which I’m loving. I felt euphoria - it was like being on substances, it was so good! But that’s how I see myself as lucky, too, that because of my issues I can also have that moment of euphoria. So, for me, the way I would describe myself is that maybe I’m always either over-stimulated or under-stimulated but never in between at a normal level.
When I am in a group of people and everyone is talking, I shut down, I don’t know what to do. I will go into one of two modes: I will either shut down or I will speak over all of them - and that could be my autism/Asperger’s. Sometimes I don’t know when to stop talking once I’ve started and sometimes I don’t know what volume. When I’m in a restaurant, I’ve often been told to, “Calm the fuck down,” and stop yelling, but I’m not really yelling. When I get passionate about something, whether that’s positive or negative, my volume shows it and I often feel like I’m speaking out of turn or not letting someone complete their sentence. It’s not because I don’t want to listen to them, it’s because I genuinely can’t judge when to start talking, when to stop and what kind of subjects to talk about. What’s appropriate? What’s inappropriate? I find it very easy to talk about things that, normally, other people would feel very sensitive about.
At this moment in my life, I may be a little more sensitive than I normally am, because of the outcome of these diagnoses and feeling like I’m subjecting everyone to a horrible time. But, usually, I’m extremely resilient. Physically, I have zero pain tolerance - I’m scared of needles, I’m scared of bees and I have a very low pain threshold. I can’t take physical pain. But, emotionally, if someone tells me something that is potentially really hurtful, I will instantly intellectually deconstruct why they’ve said it and what their purpose is for saying it. I will try and rationalise it, and deprive myself of feeling anything emotionally that I would normally be sensitive about. Maybe this is the autistic thing? For me, it’s about what they’ve told me - the content, deconstructing what their purpose is and trying to learn how to respond to it - rather than feeling it and having an emotional response. I have empathy but it comes to me in a very different way. Often, when I have a fight with someone, like my partner, I will say things without thinking because I don’t instantly think of the emotional repercussions of what I’m saying. I’m very impulsive so it comes out when I’m arguing. That’s probably an ADHD thing and an Asperger’s thing, in total destructive interference! Upon reflection, I will feel really upset about it and go and apologise. It’s a weird kind of empathy, because it’s not something that comes to me very naturally, but I have taught myself and I know what to do to feel it. Also, I am very solution driven and passionate about solving people’s problems. If someone has a problem, I will put all my resources into it – everything I know in terms of psychology. If it’s not a psychological problem, but a business problem or about someone’s life, then I’m really good at giving people advice. I think of lots of things, I get into a hyper-focused mode and then I feel passionate about solving their problems and making people’s lives better. I could never be a therapist because I can’t focus enough - I’ve tried! But, I’ve always believed that actions speak louder than words. I may not be the friend who can comfort someone with words but, if you need me, I will be there.
Total Sensory Overload @ Endicott by digboston
What do you find most challenging about your neurodivergence?
Left and right!
Um, jokes apart… that’s a very difficult question.
I find asking for help very challenging. Yeah, I think asking for help, because I know I need it very often and I know I don’t ask for it. I just have ways of figuring it out but it comes at a physical and mental cost. For example, I had a conversation with occupational health and other professionals who were encouraging me to apply for disability support and to ask for reasonable adjustments at work. I find that very, very difficult because it feels like I’m asking to do less work and I come from a culture which says, “Suck it up and move on”. It’s very difficult to have someone suggest I reduce my workload by 10%, in order that I can work like a normal person. Some of the professionals have said to reduce work by 25% because that’s actually how much I need for my issues, but I can’t do that. There are so many professionals involved and it feels very uncomfortable to have these conversations.
Nobody at my workplace knows what to do to moderate a disabled person’s workload. They don’t know what to do - this is all new territory. If I had a broken leg and I was in a wheelchair, you would make the workplace wheelchair friendly and maybe give me more time to get to work and therefore you would reduce my workload. You are joining the dots, that is very explicit. What about me? Struggling with the very nature of my work, my brain going all over the place every time I open an email. I struggle with very basic stuff, I take 4 or 5 times longer to do basic administrative tasks. But, because it’s not visible, they haven’t bothered to put in any internal code of practice. So, that’s what I’m pushing for right now. The reason I’m doing it is because I am solution driven and I want this to be not just about me. I know there will be other people like me. I’m going to push for it, not because I want to do less work, because it needs to be in the system. People need to know what to do. No one knows what to do with me and my neurodiversity.
Your employer is legally obliged to make reasonable adjustments in your work but reasonable adjustments and what they mean are not defined anywhere, so what exactly is the government mandating? No-one knows what. If I help put something in place, I am helping myself and, at the same time, I am putting some infrastructure in place to help anyone else with these issues. I want things formalised as soon as possible and then, once I’ve processed everything for myself, I want to be visible. I will have tags everywhere - in my email sign-off, on my bag, on my chair, on my desk. I’m going to put it everywhere so people know. I know the Department of Work and Pensions offer training to people you’re working with and the government pays for it, so, once I’ve settled in and feel happy in my own skin, and once I’ve fully accepted my diagnosis, I will get that training into my workplace so everyone knows how to work with disabled people. That’s the long-term plan.
What do you consider to be the strengths and gifts of your neurodivergence?
That I can do so many things at once - when I can! That I do not settle for anything and I am very ambitious. I like doing ten things at once because I think I feel a lot more alive than most people I know. I feel very alive when I’m doing ten things at once and I’m often doing multiple projects at work and in my personal life. I have so much energy, I have more energy than everyone I know! I do so many things at once: I can wake up at 7am, go for a run, go to the gym, do yoga, go to the garden, go to work, finish at 7pm and still have time and energy to cook dinner. I have so much energy and that hasn’t changed - I have the same amount of energy I had when I was 10 years old! Everyone says I should take Aderol or things to calm the fuck down, but I don’t want to. It can give rise to conflict because not everyone can keep up with it.
I think it’s just how I’m wired. And my body at the minute can keep up. At the gym I go to, there is a machine which checks your BMI and body fat and then it works out a metabolic age, which reflects physiologically how you are. According to this machine, I am apparently 14 years old!! That demonstrates that mind-body alignment quite nicely for me. I always felt that perhaps it was in my mind and maybe my body won’t cope. But, metabolically, there’s congruence, which made me feel quite peaceful as well as entertained!
How do you resonate with the words quirky, outsider, humanitarian?
I don’t think any of them.
I don’t really feel like an outsider, I don’t think I’m very quirky and I don’t feel like a humanitarian.
None of them, I think.
You know what, I hate being called a champion because I associate it with getting attention and I don’t really like attention very much. I think for me it’s about authenticity and doing what’s fair – I’m very fairness-oriented. Then, when I read about ASD, I noticed that ASD people are often obsessed with fairness. It makes sense to me that I’m doing the right thing and leaving the world in a better place than I found it. I think one of the best ways to change something is being part of it and then internally regulating it, as long as it’s done in an ethically responsible way that’s good for society.
Movement by Paul Ebbage
How does your neurodivergence affect your relationships with others?
It doesn’t really affect my relationships with my family now because I’m not really around them, but, in my childhood, they would tell me that I am the messiest person they know or I lack observation skills, I have zero observation. I was always told what I lack, but not anymore. My mum and sister are very supportive. I’m not very close with my Dad and I don’t see the point in forcing a relationship that doesn’t do anything for me. He always undermined my abilities, always. So, it doesn’t affect family so much anymore because they’re not around that often. When we do spend time together it’s usually quite pleasant.
In terms of my personal relationship with my partner, it affects us every single day. It’s a good relationship but there are problems. I’m constantly struggling. I can see what I cause and it makes me feel a bit guilty. I also think my partner is somewhere on the spectrum and they need to get diagnosed but I don’t think they want to. Since my diagnoses, my conditions have almost become a scapegoat and everything is blamed on me, whereas I think sometimes we just have a logical argument. Currently, everything is blamed on my ADHD or the new one is now my (potential) Asperger’s: “You said this and it was insensitive and it’s probably because of your Asperger’s.” Right now, it’s really, really annoying, because that happens. Maybe I need to own it and it is because of my issues, but to be constantly reminded of it is a bit annoying. Domestically, I am messy as fuck. So, I’m always quite messy and I don’t wash utensils or wash up after myself very often. The kitchen is messy, which is why I’ve stopped cooking recently because whenever I cook I create so much mess. And in the relationship on a daily basis, I say things without thinking and there’s issues every day. But there is love, there is lots of it, and there is emotional stability, which I really value. I’ve never had that before, I’ve always been in emotionally volatile relationships. The day-to-day living is quite challenging and we have problems every day, probably some of them because of my Asperger’s now I know of it, but on the inside I feel very happy about being in this relationship, it’s a very good relationship.
With friends, they have to deal with my impulsiveness and they have to deal with me saying things without thinking them through. But that means I have very authentic relationships. People that can’t stand me don’t stand me and don’t want to be friends with me and I like that. I don’t seek validation from friends or relationships at all; for me, validation comes from the inside, I don’t seek it externally in the slightest. My friends have to be used to me, how I speak and my sense of humour etc. I think one of the ways the Asperger’s works in my favour is it gives me a very dark and dry sense of humour. It’s not really my sense of humour, it’s just how I am, but people think what I’ve said is a funny thing to say. It’s not really funny, I’ve not said it intentionally to be funny, but people have a laugh so it’s good. All of my friends are authentic. I don’t have a single social acquaintance I maintain just for the sake of it. I also attract very strongly-opinionated people or people on the spectrum, and that’s because we get each other. One of my closest friends is autistic and has dyslexia, and when we meet outside in public we are a racket! I remember one time in a fish restaurant I said to him “You have to try oysters, because you’ve never had oysters.” It was the two of us in a posh restaurant, having oysters, and all of a sudden he said very loudly, “This really does taste like a vagina!” In front of everyone! We just had the most obnoxious conversation and people kept looking at us, but we seemed to be very oblivious to everything else going on and kept drinking and talking. One of the symptoms of Asperger’s is volume and not knowing what volume to speak at. I always get told to calm my enthusiasm, calm my volume, calm my body language. But that was the first time I actually felt that with someone else! It was a very fun evening. The point is that I attract very similar people: very open, non-judgemental people, who are often either on the spectrum themselves or people who are extremely non-judgemental, very tolerant and very embracing of neurodiversity. That’s just all my friends!
What helps you bridge the gap between yourself and people who may be more neurotypical?
Some neurotypical people are interesting but, in general, I think I find neurodiverse people more interesting than neurotypical people. We are still all human, though. I don’t see neurotypical people as any different, because they still have issues. I have met neurotypical people who are a lot more fucked up than I am, even having all the issues that I have. They’re not happy, and we all want to be happy and satisfied with our lives. I would consider myself to be a pretty happy, neurodiverse person, because I’m not sad or depressed, but I have met many neurotypical people who are not content with their lives. Ultimately, we all want the same thing: we want to be happy and satisfied. I don’t think that has anything to do with being neurotypical or neurodiverse. It just means as neurodiverse people we might have to work a lot harder to cope with certain issues. For me, my neurodiversity affects my levels of anxiety and that’s how I’m wired but for someone else it could manifest as depression, in which case their levels of happiness could be affected. So, I think it just manifests in different ways for different people. I think being neurodiverse increases your propensity for being more anxious or less happy. By default, we are starting at a slightly lower platform but we still share the same goals once we are at the same level. Honestly, I think I’ve met a lot of neurotypical people who are extremely unhappy. And personally, I think more neurodiverse people that I know are happier and that could be because of the kind of neurodiversity. If it means someone blanks out a bit of the unpleasant side of humanity, then that probably helps. I always assume everyone has good intentions; I never start from a place of mistrust, unless there is a reason. My default position is to trust people.
Have you disclosed your neurodivergence at work, or with friends & family?
With family, not really, because they won’t really understand it. They know I have ADHD, dyslexia and dyspraxia, but it’s just like, “OK”. I don’t think they fully understand what it means. I probably should give them more credit and not say something like that but the reason I haven’t is because I am of the opinion they won’t really understand it. It’s not just telling them I have this and I have that, but it’s also having the patience to explain it to them. It would be good knowledge for them in general but I don’t think it would affect our relationships, because I have always been how I am with them and I don’t think that will change anything.
With friendships, yes, full disclosure, all my friends know everything I am going through.
At work, I am very sceptical so only a select number of people know. My manager knows, as well as their manager above that, and they are helping me put the reasonable adjustments in place. But the higher it gets, the more sceptical I get, because I don’t know the people that will have access to this information. I think I’ll be seen as someone who just needs to be ‘managed’. I don’t like that feeling, it pisses me off big time. I know there are resource implications: if my workload is reduced, then someone else will need to do it, and I get that. But I find it very annoying for my condition to be reduced to a variable. At the higher managerial level, there aren’t any visible neurodiverse people, so I don’t trust them with understanding neurodiversity or being inclusive of me. I think by default people aren’t inclusive, which is a sad place to operate from by default, but that’s just from experience.
One thing I have found very annoying is that staff workloads are public so everyone can see everything and it’s visible. My disability adjustments should be kept confidential, because that’s sensitive information, but at the same time my workload is public so, therefore, if there are adjustments, it will be visible to everyone. It almost made it sound I have no option, but that’s because people are thinking in that system. If the information is confidential then there should be a way of making that information private and not disclose that information to everyone. Again, it’s being neurotypical and assuming that any neurodiverse person will be OK having their sensitive adjustments information public. I’m not concerned about my workload being visible, because I want to be visible, but it is a valid argument. What if I had a condition I didn’t want anybody to find out about? People would be able to see I have adjustments and why should they? I’m thinking in the future for someone who may not be as comfortable as I am with disclosure.
lost in thoughts… lost in prayers by Rajarshi MITRA
How did you experience school and education?
Although I went to one of the best schools in India, they had no understanding of accommodating neurodiversity. Indians study really, really hard to get into college, the competition is high and there are so many people applying for a single college (university). So, even though I found out I have ADHD, nothing was really done to help me and I just continued having issues and challenges. Some of the challenges were really significant and they would always come at a cost to me. For example, when I was preparing for my A levels or when I was doing my University studies, I hated every bit of it because there was no support in place. There was no understanding of my strengths and weaknesses, so I decided to study psychology in order to train myself and understand what was going on. Sadly, it just felt like one of those subjects where you study a lot of things without any practical knowledge of what can be done about it, given the confinement of the education setup I was in. There were suggestions, like certain software that can be used for people with ADHD, but the infrastructure was totally absent. It was good to know what my challenges were but nothing really helped because my ADHD is very severe.
I didn’t have any friends at school. That’s something I taught myself at university. At school, I never had any friends and I was OK with it, I never felt lonely. I was bullied but as I grew older I didn’t let the bullying affect the rest of my life. Maybe as a result of the autism, I don’t really feel very sensitive about the bullying and I’ve worked through those experiences. I’ve done so much self-work because I didn’t find any psychological professionals in India that I could afford. So, I had to self-help a lot. Anyway, I was a complete loner at school and I was very close to my mum and my sister. I think I probably survived my childhood because of them. When I went to university, I realised people need a friendship circle and they needn’t be isolated. That’s when I started going to the gym to look a certain way and connect with others socially. I’m not a narcissist; I hate looking in the mirror. I grew up as a very skinny, invisible person so internally that’s what I feel I am.
When I was in my early twenties, I moved to the UK and I had those same challenges associated with ADHD. Unfortunately, I moved in a very chaotic way as my visa was initially rejected and the second time I applied I was already a month and a half late for my course. That didn’t work to my strengths, because I already struggled to just keep up the pace. So, in my first semester, I screwed up big time. In my second semester, I tried to pick up but still didn’t do well in my modules. The only thing that rescued me was my research, because when I did my dissertation I could self-pace and use techniques I knew would help me. So, I did really well in my dissertation in my postgraduate degrees but all the other modules were crap because they all happened at once. The worst thing for me is to switch from one module to another one and then back to something else. While I only just passed in a lot of my modules, in my dissertation for both degrees I got 80+ marks. That was what rescued me. Based on that, I started my PhD. I told my supervisor I had ADHD but there was no support offered. I was too late to understand what university wellbeing and disability support was. I come from a culture that just says, “Suck it up.” I found out about disability support after I finished my PhD! By then it was already too late and I struggled with sleepless nights, insomnia and working on weekends at the cost to my personal life. My personal life has never been a smooth sail because of this, it’s all a big mess.
How has being neurodivergent affected your mental health?
I am a very anxious person. I’m not depressive, so I don’t get depressed at all and I’ve never had suicidal thoughts. I’ve only gone through depression once in my life but I don’t know if it was really depression or if I was upset because my first girlfriend left me for someone else. That was the only phase when I was depressed but I don’t think it had anything to do with my neurodiversity. I’m anxious and that’s how it affects my mental health. It takes me ages to snap out of an anxious period. And when I’m anxious I can’t focus on anything, I can’t work. I will work, because I’ll push myself to work. I’ll type a line of something, but then delete it and lose my chain of thought. It’s quite bad.
My ADHD, my lack of sleep, and the fact I can overthink things a lot contribute to feeling anxious. I think, think, think, and deconstruct everything around me. That makes me anxious. That leads to insomnia, it leads to an inability to focus on things at times. It detracts from my work, too. Suddenly something will come into my head and I lose my train of thoughts. If that happens, I just tell my students I’m having an ADHD moment; I say, “Give me a moment” or I ask them to remind me what the last thing I said was. I have a very bad panic attack disorder, which I have worked on but I used to get panic attacks, completely unexplained in the night. At 2:30am I would wake up and have a massive full-blown panic attack. It doesn’t happen anymore but for about two or three years it would happen a few times a week, a few times a month, the frequency would go up and down. I would wake up and look at my watch and it would be exactly 2:30am when it would start. I don’t know why, that was peculiar.
How does your neurodivergence affect your sense of belonging, and feeling heard, seen and understood?
In terms of belonging to people as a neurodiverse individual, it’s great because one of my best friends is neurodiverse so it’s as good as it gets. I think my issues around belonging are more cultural, from growing up in India and not really belonging there because of my LGBTQ+ identity. I was very unapologetically that way, because I did whatever I wanted and people judged me but I didn’t really care. Because of that, though, I didn’t feel I belonged or fit in. My family was very supportive about my sexuality. That’s where the ASD really helped because I didn’t care about what they felt if I came out to them. Everyone should be ASD in that sense - as in not give a shit about what anybody else feels about them!
Although I have British citizenship, I don’t feel I fully belong here or in my home country. It’s a bit like, “Where do I belong? I don’t know.” I feel like a bit of an Earthling in a way. I’ve lived everywhere but again I don’t know how important belonging is for me. I know people want the feeling of belonging, but I don’t think I really care about belonging because I’m quite happy not fitting in. I don’t really need to fit in, I’ve never felt the need to. Culturally, it’s difficult because my partner is from a different culture to me. I don’t get the stiff upper lip at all! I get very frustrated when people don’t talk about what they’re feeling, because I find it very difficult to understand non-verbal communication.
I feel very heard because of my job and, when I’m in a crowd of 200 people listening to what I have to say, it’s very empowering. When they listen to what I say and either agree or challenge then I love it because they are absorbing what I am saying. So I feel heard because of my job.
I feel quite visible, I just don’t know if I always like it. I don’t like feeling so visible always; I’m a bit peculiar to look at when I’m walking down the street and it makes my partners very uncomfortable sometimes.
Feeling understood… no. No. I don’t think I feel very understood. I can’t say that I am because I don’t think my partner understands me and that’s the person I spend most time with. I don’t think anyone at work understands me but they are trying to, which is nice. I don’t think a lot of my friends understand me, unless they are neurodiverse themselves. So, neurodiverse people get me, the others don’t. Unless they are very, very educated. Let’s just say, I’m still waiting for someone neurotypical to get me.
How do you support your own wellbeing?
I exercise frequently. I focus on my work-life balance a lot now, which is why I am pushing for the reasonable adjustments and disability awareness. Previously, I’ve been insecure about my position in this country but now I have citizenship I am not insecure anymore. This makes it easier to push for the right thing for myself, which are reasonable adjustments at work. I know they can’t just get rid of me, because that’s discriminatory. And I have everything going for me in terms of diversity!
I try and be as visible as possible to people that I have frequent interactions with. I always tell them about my issues and that they’ve got to be patient with me or understand I have them. At the same time, I will overcompensate a lot. For example, I will over-prepare at work. I can’t do last minute stuff. If I have 10 weeks of lectures, before I even start teaching the first week, I have notes for every week. I have notes ready for all my staff. It comes at a huge cost for me because I have days of working day in and day out to make sure everything is planned. So, I try and be visible so that people know and I can manage their expectations but at work I overcompensate, which comes at a cost to my mental health. During the term, I can be more flexible and therefore more able to respond to problems.
I wish I had more me-time, so I’m working on that. I feel the need to constantly populate my time with things, but again that could be an ADHD thing. I continuously do things but I never just sit. On holiday, I don’t know how people just sit and relax. I can’t do a holiday with one week by the beach, it sounds like my idea of a nightmare, unless you throw in activities every single day, like sports or learning something. I can’t just sit; I can never sit and just be. I need to do more of that but I don’t know how to. I used to be able to: I had trained myself into doing Reiki for 1.5 hours every day when I was in my early twenties. It started with 5 minutes and slowly it went to 10 minutes, and so on, but then I had fewer worries! Now, I have so many things going on that I don’t think I can switch off for an hour and a half. Even a 5-minute meditation now I find very difficult. But exercise I can do, so a dynamic meditation would be quite nice for me.
What would you like people to know about your neurodivergence?
I would say don’t be afraid to ask. Just ask and don’t fear being politically incorrect, because political incorrectness belongs in the bin. I have a safe space in my lectures to discuss issues like race, sexuality and neurodiversity. So, the same thing applies to me not only because of my neurodiversity but also because of my sexuality. I just say, ask and don’t fear being politically incorrect, because I will tell you if something you say isn’t OK. That would be my one message to everybody: don’t fear asking. Don’t fear, just ask!
What do you contribute to the world with your neurodivergence?
Nothing.
Is that a bad answer?
I was thinking that the only thing I could contribute is neurodiversity awareness but if we didn’t have any neurodiverse people that wouldn’t be required, so nothing.
I don’t see my work as a contribution, I just see it as something I must do. In a way, I feel like if I could eradicate neurodiversity, I would. But I can’t, and it’s here to stay and you’d better get educated about it! But I don’t think I contribute anything beyond that.
If you’d like support to navigate your neurodivergence contact bryony@creativesoultherapies.com
For a good source of information on ADD and ADHD see Additude
For a good source of information on neurodiversity see understood.org