Posted on October 31, 2021
Not long after I learned that October is ADHD Awareness Month, I saw this challenge on Twitter and you know me, I love a good challenge.
I thought it would be annoying to post something every day, especially since I knew just from looking at the prompts that there would be days when I didn’t have much to say, so I decided to do the month as one self-contained post. Having ADHD and everything that comes with that… it’s all still relatively new and I’m still trying to figure it all out, especially considering the crossover with autistic traits. I thought that, maybe, this might help with gaining a better understanding of ADHD and how it affects me individually.
So, here we go…
Day 1 – Introduction
If you’ve been reading my blog for a while, you may know some of this stuff already so bear with me…
My name is Lauren Alex Hooper and I’m a twenty seven year old woman (I use she/her pronouns), although I’m not really sure how I identify in terms of gender and sexuality; up to now, all of my energy has been spent on figuring out and managing my health so there hasn’t really been the time to explore that area of my identity. Between the ages of twenty and twenty six, I was diagnosed with Autism Spectrum Disorder (ASD), Attention Deficit Hyperactivity Disorder (ADHD) (Inattentive Type), Hypermobile Ehlers-Danlos Syndrome (hEDS), Postural Tachycardia Syndrome (POTS), Treatment Resistant Depression (TRD), Generalized Anxiety Disorder (GAD), Obsessive Compulsive Disorder (OCD), and Borderline Personality Disorder (BPD). These conditions all affect me daily and I live with both chronic pain and chronic fatigue, believed to be due to my hEDS. Given the often overwhelming challenges that these all present, I’m still living at home with my Mum and our family of five cats (made up of three generations). Two of my other parents live nearby, with my fourth parent in London. My younger sibling, Charlie – who is an amazing artist of many disciplines – is also based there.
In roughly the same time period, I completed a BA and an MA in Songwriting, my biggest and most enduring special interest. In 2018, I released my debut single, ‘Invisible,’ a song that documents my struggle to be seen and heard as I tried to get help for my mental health and ASD; I’m incredibly proud of that song and all of the proceeds go to YoungMinds, a charity supporting young people with their mental health. Then, in 2019, I began the release cycle of my debut EP, Honest, which was completed in late 2020 (delayed somewhat by the pandemic). The EP is a collection of my experiences with mental health, centered around the idea that things only really got better when I started being open and honest about what I was going through. As of October 2021, this little, self released EP that was made in various bedrooms has reached over 120,000 streams with a limited run of physical copies on sale at Resident Music, THE independent music shop in Brighton (UK), where I live. It’s been an absolute rollercoaster but I’m really proud of it and all it’s achieved. And now, with that era all but wrapped up and my Masters done, I’m working on several new projects, including an album about my experiences as an autistic woman.
Day 2 – What I love about being an ADHDer is…
Given the overlap between Autism and ADHD, I’m not entirely sure where which traits come from, if it’s possible to really separate them. I’ve done some research and it seems that there’s too much overlap to truly say that one trait belongs to one and not the other but the following things are what seem to commonly come up in relation to the positives/strengths of ADHD…
I have to say I’m not wild about the term ‘ADHDer.’ It feels very clumsy. It also feels a bit like something I actively participate in, like I chose it, like I’m saying, “I’m a runner,” or “I’m a painter.” I don’t know; I’m not convinced by it as an identifier.
Day 3 – My Identification/Discovery Story
I was being assessed for hypermobility (and was subsequently diagnosed with hEDS) and at the end of the session, it came up in conversation that I was thinking about getting tested for ADHD (I’d been researching the ways I’d been struggling and ADHD had come up as a possibility, which I know often occurs alongside Autism) and the consultant said that she was qualified to do that so we could schedule an assessment if I wanted to. So we did and a few months later, I was diagnosed with Inattentive ADHD.
Day 4 – Reactions to Identification
Since this is just another step on my journey of trying to make sense of myself and why I struggle the way I do, I haven’t really felt the need to make an announcement or anything like that. I told my family and friends, of course, and I’ve brought it up when necessary, like when trying to get accommodations at uni, but otherwise it hasn’t been been a huge thing, not like discovering I was autistic was. So everyone’s just kind of taken it in stride, adding it to their picture of me – those who know about it anyway.
Day 5 – Hobby Graveyard
I’ve never really thought of moving on to a new hobby as leaving them in a ‘hobby graveyard.’ I’ve always felt like it was more that I was prioritising certain stuff or that I was just finding my way to more ‘suitable’ hobbies. Technically, yes, I have multiple hobbies that I’ve stopped doing but rarely because I got bored of them and more because I evolved away from them. But here are some of my past hobbies…
That’s all I can think of off the top of my head. I still love most of these things but I just can’t physically do all of these hobbies: I don’t have the time, they’re expensive, and there are other things I love doing more. But hopefully I can come back to them one day in some way or another.
Day 6 – Supports and Appreciation
I am super lucky to have a lot of great people in my corner. I have a wonderful, close-knit family who have all been deeply supportive; not only have they all been great in general but they’ve all been so incredibly helpful in different areas of my life over the years. I can’t even begin to express how grateful I am, especially to my Mum. She has been a hundred percent with me every step of the way and she’s just been a force of nature in the pursuit of getting people to listen to and help me. And not just that, she supports me every day, helps me to manage just being alive, just being a person in this difficult, inflexible society. I don’t know what I’d do without her. Oh, and there are also my cats who, while they have absolutely no idea about any of this I’m sure, help maintain some level of calm in all the chaos.
I’m also very lucky to have some really great friends. They’ve never been weird about all of my diagnoses, only ever respectfully curious about the parts they don’t know much about. And I’m always open to questions. Once, while in conversation with a friend, I said that I was always happy to answer questions and in reply, she said that all she needed to do to understand me was listen to my songs. I probably looked like a deer in headlights. I mean, that’s what I try to do with my songs but to hear her say it so plainly kind of took my breath away. My friends are really sweet about supporting me and accommodating the issues that make my life hard, that make spending time together hard. I appreciate it so much; a lot of these things that I struggle with make maintaining friendships (from both sides) really hard and it means so much to me that my friends have stuck with me.
And although I’ve had some really supportive tutors over the years, I only recently had a neurodivergent tutor for the first time and it was amazing. It’s like we spoke the same language and she was able to translate this confusing academic world into ideas and words that I understood. I got so much out of my course and out of the work I was doing in the time she was my supervisor; it was pretty amazing to work with the guidance of someone who has a real understanding (and also appreciation as well) of how differently my brain works. And considering how well I did in the module, I think that shows just how well a neurodivergent person can do when they’re understood and supported.
Day 7 – The ADHDer Community
I haven’t really found ‘the community’ yet. After my ASD diagnosis, it was about three years before I sought out any kind of community; I had to figure out what being autistic meant to me first before I could engage further, if that makes sense. So I wouldn’t be surprised if it takes me a while to feel ready to reach out but then maybe it will be quicker this time since I’ve already gone through a similar process. I’m part of multiple Facebook groups relating to Autism, one of which is for women with Autism and ADHD, and I’ve enjoyed those interactions a lot so far. I also have a friend who’s going through the ADHD diagnostic process at the moment so it’s nice to be able to share those experiences with someone I already know since I didn’t go through it that long ago.
Day 8 – Favourite ADHDer Blogs/Comics
I have to say, I haven’t really found any ADHD blogs or comics that really speak to me yet. But I also haven’t been looking in any kind of dedicated way. I’m still making sense of this diagnosis, still trying to manage the struggles, and still trying to get help for it. That’s my main focus at the moment.
Day 9 – Favourite ADHD Owned Business
With Christmas not that far away, I have been looking for present ideas and I do like to buy from independent shops when I can. I’ve found a few autistic owned shops but as of yet, I haven’t found any ADHD owned shops yet. But I’m still looking.
Day 10 – Sensory Seeking/Aversion
I’m generally a sensory-seeking person but they’re very specific sensory experiences that I crave. I love colour and I love lights, especially colourful lights (as long as they’re not in my eyes or face). I love glittery things and shiny things. I also love patterns: smooth curves and crystalline angles. I love the patterns in nature, like the symmetrical patterns in the petals of flowers (Dahlias and Gerberas, for example). They just make my eyes feel good and looking at them relaxes me.
Sound is a bit more complicated (volume can be a real issue for me, especially when I’m stressed) but as a musician, I love the details and nuances in music and in sound. I could talk about music for hours but for this, I think I’ll stick to just distinct sounds. I love the sound of thunder, of heavy rain, the rustle of leaves as you walk through them, snow or frost crunching under foot, the crackle of a fire, the sound of typing. I find all of those sounds so soothing. But then there are also noises that really upset me, that can send me into a meltdown even. Metallic sounds, voices low enough that I can’t quite make out what they’re saying, babies crying, sudden loud noises like fireworks or sirens, shouting or raised voices, mechanical sounds (like buzzing or humming, or that high pitched tone/whine)… they all, at the very least, get the hairs on the back of my neck standing up. Oh, and snoring.
Smell is a really tough one for me. The smells I like, I love: most fruits, especially satsumas; the beach and the sea; forests, pine, cut grass; wood fires and the smell in the air after fireworks (a tough one when the sound of fireworks can cause me to have a meltdown). But the smells I don’t like have me scrambling to get as far from them as possible so that I don’t throw up: metallic, rotten, sickly sweet smells and the way they catch in your throat and leave you choking on them. I’m sure there are more, and more specific ones, but that’s all I can think of right now and it’s not exactly the most enjoyable thing to think about.
Taste is another difficult one, given that food is a complete minefield for me. I crave sweet tastes a lot, especially artificially sweet tastes (although I read recently that that is common in unmedicated ADHD), and I like salty things but anything more complicated than that is unpleasant and overwhelming. Even the lowest point on the spice meter is too spicy for me. (And the texture of food is a whole other issue…)
I’m also super sensitive to what I’m touching. There are sensations that I love, like frost or snow crunching under foot, feeling loud music in your body at a concert, fabrics like velvet, the sensation of being in water, the weightlessness of being in water, how your fingers feel against ice, my cats’ fur, my lovely old dog’s ears, and so on. And there are sensations that I hate, that I can’t bear feeling, that I have to wash off in order to think clearly (and sometimes even that isn’t enough): touching something sticky, clammy, metallic, oily or greasy, slimy, powdery or dusty. They make me shudder just thinking about them.
I’m sure I could talk more about sensory stuff but I think I’ll save it for another day or this post is going to get even longer than it’s already bound to be.
Day 11 – Fidgets and Stims
I go through phases with fidget toys: one will satisfy me for a while and then, out of nowhere, it stops doing whatever it is that helps and I move onto another one. Hence why I have a box of them so I can quickly and easily choose a different one. I’m currently fiddling with two: I tend to play with my tangle one-handed (especially when I’m trying to sleep) and I’m also wearing (or at least trying to remember to wear) a necklace made out of a shoelace with a hairband attached. I’m pretty sure my hair-pulling is how I stim but I really don’t want to be pulling my hair out so I’m trying to redirect the urge; this little set up is as close as I can get to the motion of hair pulling and hoping I can move from hair pulling to that and then a movement that doesn’t put so much repetitive strain on my elbow and shoulder.
From left to right, top to bottom: black tangle, black fidget pad, black fidget cube, two sensory glitter tubes, homemade stimming necklace, three blue magnetic spinning rings, silver elephant spinning ring.
Day 12 – Favourite ADHD Charity
I have yet to go looking for ADHD charities, to be honest. I just haven’t had the headspace but there are a few, local ones especially, that I’d like to investigate further when I feel like I can properly commit to it.
Day 13 – Family
I’ve already talked quite a bit about my family, back in the ‘Supports and Appreciation’ prompt. I have four fantastic parents; then there’s my Dad who died when I was 13. I don’t know much (don’t know enough) about him. Finding out who he was and what he was like is an ongoing project. I also have a younger sibling; we were super close as kids and although we’re not as close now, that’s simply as a result of growing up and building our own lives. We still have a great time whenever we can get together. Due to my various disabilities, I live at home with my Mum and our family of cats. I love them all so much and I’m so proud to call them my family.
Day 14 – Order from Chaos
I feel like I’m more mentally chaotic than physically; I’m not the most organised person in the world but I manage pretty well, particularly with help from my Mum. But my thoughts are another matter. Sometimes my thoughts move so fast that I can’t keep hold of them long enough even to figure out what they are; I find those times really scary. Trying to find something to hold on to in the chaos is hard and it’s easy to feel untethered and panicked. Fortunately it isn’t like that all of the time though. I still feel like I have an overwhelming amount of stuff in my head that I’m constantly sorting through.
Day 15 – Everyone Should Know
It’s not that we’re not trying. We are trying. We’re trying so hard. A big part of ADHD is struggling with executive function, mental skills that help us with organisation, planning, start, stay focussed on, and finish tasks, among other things. What some people assume is laziness or lack of care, is actually difficulty with executive function and struggling with these skills can cause those with ADHD great distress. Being told to ‘try harder’ when you’re already trying so hard is not just frustrating but makes you doubt yourself, wonder whether you actually are lazy. This should never be the case. ADHD is a neurodevelopmental disorder (the debate about whether neurodiversity should involve words like disorder or deficit is ongoing and important but too big to get into here); it’s a medical condition. Difficulties with executive function are ‘part of our wiring.’ That’s not to say that it’s fixed, but telling someone to ‘just try harder’ or ‘just focus more’ when their brain doesn’t respond to that kind of motivation is unhelpful and unkind. They’ve probably already thought of that, you know?
Day 16 – Work/School
Education has been a mixed experience for me. I’ve always been incredibly shy and I struggled socially although no one really realised the extent of it, myself included: I learned to mask very well very quickly, long before I knew what masking was, long before I even knew I was doing it. And being a huge perfectionist, I felt a lot of pressure and anxiety around my grades, sometimes to the point where I made myself unwell. Having said that, I’ve achieved some great things academically and while I’ve never had masses of friends, I get on well with people and have a group of close friends that I absolutely adore. So, yeah, it’s been very mixed.
I think it’s fair to say that the undiagnosed ASD and ADHD clearly contributed to the difficulties I’ve had throughout my time in education, which is most of my life really. And I don’t think it helped that I missed the first two and a half years of secondary school (a period of illness that was half-heartedly diagnosed as Chronic Fatigue Syndrome, diagnosed formally in retrospect, and now it may be that it was due to the hEDS – I’m really not sure what to think now), putting me at a disadvantage academically and socially. But what was probably a combination of natural ability, my terrible fear of getting in trouble, and my perfectionism meant that I did relatively well in secondary school. Sixth form and my A Levels were mostly dominated by the strengthening symptoms of my anxiety and depression: I did well in the subjects that I loved but otherwise I struggled. I couldn’t get information to stay in my brain, I couldn’t understand certain concepts as hard as I tried, I felt like I was running an endless obstacle course that only seemed to get harder, and I was constantly exhausted. It all kind of spiralled and I barely managed my exams. I tried to resit several of them the next year but my mental health was so poor (plus whatever was going on with the undiagnosed ASD and ADHD) that I didn’t do any better. Fortunately though, I did have the grades I needed to pursue my BA in songwriting so it all worked out in the end.
University was, obviously, very different from secondary school and sixth form but I didn’t exactly get the same experience as most of my peers. Because of the challenges I live with (my mental health problems weren’t diagnosed until the January of my first year and my ASD wasn’t diagnosed until the summer break between first and second year), I lived at home and commuted to London for university, staying with family when I had two of more days of classes in a row. It was necessary but hard; I was so tired all the time (I was actually taking naps on the sofas at uni at certain points) and it didn’t help the feeling of separate-ness, being so far away and unable to join the spontaneous meet ups and so on. And again, the classes I loved, I absolutely loved but when it came to the classes I didn’t enjoy or found difficult, I really struggled – I still don’t feel like I have a good grasp of music theory (not that I’ve given up). It felt like there were just some things I couldn’t learn, like my brain just wasn’t capable of processing the information (something I’m working on, especially after learning more about ADHD and hearing similar stories from others). And although it wasn’t a constant feeling, I struggled with feeling invisible and feeling like I was never going to be good enough to do the one thing I wanted to do: write and release songs. As amazing as it was to study my very favourite thing and therefore spend most of my time doing it, doing it surrounded by other people who all want the same thing was really challenging at times: you’re constantly exposed to new, amazing music and as cool as that is, if you’re doubting yourself even the slightest bit, that can just make the feeling ten times worse. It’s easy to slip into comparing yourself and seeing all of the ways in which you aren’t as good as this person or that person. So, yes, it was an amazing experience but it was incredibly hard.
The MA was a very different experience (apart from, you know, doing most of it in a global pandemic). The pandemic definitely played a big part: my anxiety was so high, I felt completely overwhelmed by everything that was going on in the world, and I was adjusting to a whole new way of learning (and cowriting). I’m sure those things affected my ability to take in, process, and use new information. I loved the practical part, the constant writing of songs and constant cowriting; I loved that and I feel like I did a lot of my best work so far. But the modules that included extended research and essay writing were a struggle: I found it incredibly difficult to focus on the research I was reading, to digest it enough to pull out the useful information, and then construct the essays themselves. In the first year, my Mum sat with me for hours and hours, helping me to collect all of the relevant information and painstakingly put it together. In the second year, for the final project, I had an excellent supervisor (who is also neurodivergent and therefore had a personal as well as professional understanding of how I’d potentially need to approach things differently), which made a huge difference. I did still struggle though. Staying focussed, attempting to keep my attention from wandering, pulling together all of the information (it was a lot: four-ish months of work that had to be condensed into an hour’s presentation)… it took every drop of energy I had. I was concentrating through sheer force of will and when it was all finally over, I was beyond exhausted.
While I’ve pretty much considered myself a student up to this point, I guess I am self employed: I am dedicated to being a singersongwriter and even though I love it and it started out as a hobby, it’s now my job and one that I want to spend my whole life doing. I’m dedicated to making that happen but it’s freaking hard work sometimes and there are a lot of challenges. I love the creative side and those related decisions often feel very easy, almost instinctive, but the logistical, business, marketing side is really hard for me. For some reason, I find those decisions and tasks much more likely to overwhelm me and money-related tasks are particularly stressful for me (something I’ve seen other people with ADHD talk about). I’ve had some really great help with this up until now and I’m so grateful for that but I would love – so much – to find a way to make this stuff less challenging. So often the level of stress in response to these tasks isn’t proportional and I have to believe that it doesn’t have to be this hard. Now that I’m not studying (although I still have a lot to do), I’m hopeful that I can dedicate some time to this. And I’m cautiously hopeful that the ADHD meds I should be starting in a few weeks will improve things too. As I said, I’m committed to making this happen so I’m doing my best and I have some good people in my corner to support me.
This one has gotten very long so I’ll stop there, I think.
Day 17 – ADHD People I Admire
Kalie Shorr – I’ve been a fan of Kalie’s for years – she’s a fantastic songwriter and performer, she’s super creative, she’s incredibly hardworking, she’s hilarious, she’s a really lovely and genuine person, and she uses her voice for the things that she’s passionate about (always in creative and interesting ways that emphasise her words, of course) – and then, earlier this year, she made a podcast episode about how she’d been diagnosed with ADHD and what she’d learned about herself and certain past experiences in the light of the diagnosis. She described experiences that I really relate to and her positive experience with medication (which she’s been documenting on Twitter – often hilariously, as is her way) has helped me in my own ADHD journey. And as someone who is pursuing the same career path as am I (and is doing so very successfully), it gives me hope that my ADHD isn’t something that will make this path impossible. It might not be easy but it’s not impossible and I’m really grateful to have someone (and someone I think so highly of) remind me of that at this moment in time. (I love this quote from a recent interview: “That’s why I love co-writing as well, I actually think it has a lot to do with… because I love writing by myself and I’ve written some great songs by myself. It’s not that I can’t, it’s that I love the process of co-writing. I think it’s because I have ADHD with the massive dopamine deficiency. The immediate feedback you get when you put out a good line and the people in the room freak out over it, that feels so much better than when I write a good line in a song I wrote by myself and I’m like ‘I think this is good, but I’d rather wait for someone else to tell me that it’s good.’ I get so energized by all these tiny pings about writing a song, and then you get the big hit of dopamine.”)
Emma Watson – I’m somewhat hesitant to include Emma Watson since she hasn’t spoken personally about having ADHD but the information is out there so, if it’s true, I would have to include her in this list. Growing up with Harry Potter, with the characters and the cast, she was always someone I looked up to and I remember an interview where she talked about how her Dad really didn’t have the money to send her to the school he did and how her birthday presents were her uniform and her school supplies and how she worked hard every day (finishing with nine A*s!) because she wanted to make him proud, to show him how much she appreciated it. Of course I’ll probably never be able to completely detach her from Hermione (as I’m sure is the same for many people and probably for her too), it’s been very cool to watch her grow and experiment with different roles and engage in important social issues (I think a good example is this video interview where she talks about finding the constructive criticism in social media, educating herself and broadening her understanding of feminism, the need for the education system in the UK to revise and improve the teaching around Britain’s involvement in foreign affairs (including how the country profited from slavery), transgender issues, and more) while still remaining a very normal, relatable person. She’s achieved so much, she’s pushed her own limits and challenged her comfort zone, and she’s trying to use what she has to make a positive change in the world (despite feeling like she’s still figuring herself and her life out) alongside the challenges of living with ADHD, whatever they are for her, and I find that really inspiring. (x) (x)
Simone Biles – I think it probably goes without saying that Simone Biles’ talent, skill, and incredible work ethic is enough to consider her a person worth admiring. But she’s also repeatedly shown such incredible emotional strength in very difficult circumstances (this year’s Olympics being the most recent example) and has handled them so thoughtfully and gracefully. At the Olympics, even with so many people criticising her for even considering it (and then for doing it), she put her mental health first and stood by that decision. No doubt she made that choice for herself but by making it and talking about it publicly (and talking about it unapologetically, without any shame), she sent such a powerful message that meant so much to so many people, that sometimes you have to prioritise your mental health regardless of the situation and that that is okay. It’s something even the most self aware of us struggle with, even if we understand why we should to do it; it’s a vicious cycle that, often when you’re struggling mentally, it becomes even harder to remember and/or accept that. Seeing someone actually do it, do it under immense pressure, and continue to stand by it after the fact is very powerful and hopefully it will help a lot of people to remember that it is possible, that the world won’t end if they need to stop and take a break from everything. So I can only admire and respect her strength and her willingness to share her experiences because there’s no knowing how many people she’s helping. (x)
I’m sure there are more people I could add to this list but these three are all I can think of at the moment.
Day 18 – Someday…
On a personal level, I can’t help hoping that – someday – I won’t feel so ‘othered’ by being neurodivergent, that I won’t feel so different and so deficient when and after spending time with neurotypical people. It’s not that I don’t enjoy spending time with these people because I do: almost everyone I know is neurotypical and those that I love, I love dearly. But there are throwaway comments and common experiences that just make me feel so different to everyone around me and it’s just so exhausting to have these constant, endless reminders. It’s so hard to try and accept my ASD and my ADHD when it feels like, everywhere I turn, one thing or another is telling me that I’m… less than or wrong or broken. Someday, I’d like not to feel that way.
Day 19 – I love it when…
I can just totally hyperfocus on something without interruption or pressure to do something else. I just love falling down a rabbit hole and reading everything I can find on a subject, learning as much as I can about a particular songwriter’s process, the theories around alternate universes, the different types of typewriters, why thunderstorms make certain people (myself included) feel so much better… I don’t remember it all but I love the feeling of soaking it all in. And it does mean I have a random fact about almost everything.
Day 20 – Communication Style
I’m not really sure what this prompt is asking of me, to be honest. Googling ‘communication styles’ gives me so many different possibilities that it’s hard to know what the right one for this prompt is. Maybe this is something I’m going to have to investigate further but for now, the way I feel I communicate best is through the songs I write. Being able to use lyrics, melody, harmony, instrumentation, production… the right combination of those things can convey a feeling or an experience in such a pure way. Not long after I met one of my now best friends, we were talking about me being autistic (I think it was in the context of a song she was helping me write, I’m not sure now) and I just made the casual comment that if there was ever something that she wanted to know or something she didn’t understand, she could always ask. And she replied, ‘I just have to listen to your songs to understand you.’ I’m not gonna lie, I was kind of floored by that response (and I still am a bit – it makes me very excited about the music projects I’m currently working on). I mean, that’s the goal – to find connection through the songs I write – and my friend had just confirmed that for me. So that was a big moment and a special one but I think I’d still be saying the same thing had that not happened. Songwriting feels like the way I communicate best and to have that in my life is something very special indeed.
Day 21 – One thing other people don’t understand…
From my admittedly limited personal experience, I think a lot of people find it hard to reconcile ADHD with good grades: if you’re turning in work on time and getting good marks, you couldn’t possibly have ADHD, for example. Thinking like this can prevent those struggling from getting support because they don’t show the stereotypical signs of a condition like ADHD. Apart from 2013 (the year when my mental health problems really started to manifest, resulting in such a crisis that I barely made it through my A Level exams), I’ve always turned in work on time or early (unless I had an extension due to health stuff) and achieved high grades in pretty much all of my classes. Personally, I think that, up until A Levels at least, this was largely due to a natural ability, the fact that I enjoyed learning, and very intense perfectionism. Getting to do a BA and MA in songwriting, my most enduring special interest, helped to balance out my struggles with executive function, I think: because I was so passionate about what I was studying (for the most part at least), it wasn’t as hard as it might’ve been had I been studying something that I was less passionate about. I’ve definitely had areas and periods of time in which I’ve struggled – I wouldn’t have sought out what resulted in my ADHD diagnosis if I hadn’t – but I guess I’m just saying that you can have ADHD and be a good student and the idea that you can’t is a harmful one.
Day 22 – Dispel a myth
I don’t know whether this myth still persists but I definitely grew up with the impression that having ADHD meant an inability to sit still. If that myth does still exist, I’m definitely proof that that isn’t true, as a constant of ADHD at least. I can sit in basically the same position all day without moving because I’m so absorbed by what I’m doing. I forget to move, to the point where it’s actually causing me problems: my chronic pain (thanks to my hEDS) is exacerbated by these long periods of no movement so I’m actually trying to move around more. So, yeah, we can sit still.
Day 23 – Can’t live without…
My family. On any and every level, I could not live without them (and I include my close friends in this circle too). But I’ve talked about them quite a lot so I’m gonna say songwriting as well. When I’m writing a song, the rest of the world goes away and I feel like I can just be me, focussed on something that I love more than pretty much anything else. And then, when I finish a song and feel like I’ve really said what I wanted to say, that feeling is so special. I feel like, for a little while at least, I’m in sync with the rest of the world and all of the usual friction that exists just disappears. I feel calm and relaxed, like I’m finally still; usually I feel like I’m constantly vibrating, which is just so exhausting. So, while I love the creative discipline of writing songs, I love the way it makes me feel. I’ve never experienced anything like it.
Day 24 – ADHD Political Issue
A massive problem with conditions like ADHD, as well as other neurodivergencies, is the lack of support available, for those who appear to be functioning well especially. So many individuals, myself included, have had to fight for support – in education, from medical professionals, sometimes from the government – because, so often, people just don’t understand the challenges that these conditions present or don’t believe those asking for help. I can’t get too deeply into this (especially at the moment, given that I’m overly emotional due to the reduction of my antidepressant medication – an unfortunate but necessary step in order to try medication for my ADHD) because I’ll just get too upset but the society we live in is so deeply ableist, and it’s so entrenched that no one even notices. And worse, a lot of people don’t seem to care about changing it. We’re in the minority, right? Why should society change to make the lives of the few better when the lives of the many are just fine? Honestly, the apathy so many people have towards those with disabling conditions (I know not everyone with ADHD considers themselves disabled but some do) – conditions that are often made worse by how our society is structured – makes me so, so angry and just so sad.
Day 25 – Symbols
To be honest, I’m really happy to stick to ribbons of specific colours; I like the simplicity. But I also understand that, at some point, the various colours are going to get too similar and people aren’t going to be able distinguish one from another. But I’m not sure how an entire community will ever be able to agree on one symbol. I’m more familiar with the various Autism symbols but for ADHD, I’ve seen the orange ribbon, the rainbow infinity symbol (which is often used in the autistic community), the butterfly, the rainbow butterfly. Ultimately, I think that what we experience with ADHD is too broad to be summed up with an image like an animal or a symbol because they have their own associations. This is why I like the orange ribbon.
Day 26 – Favourite ADHD Book
I’ve yet to read any books about ADHD, given that I was diagnosed in the middle of my Masters and had to give everything I had to that. Plus I’ve found it hard to focus when reading books over the last few years. But I have had multiple options recommended and I think these are the ones I’m going to look into first…
Day 27 – Identity Language
Personally, I don’t really have an issue with how people identify themselves; they should use the language they feel comfortable with and respect that in others. As a general rule though, I think identity-first language is important for the neurodivergent community. With conditions like Autism or ADHD, they affect the way we perceive and process the world; they are intrinsic to who we are, to our identities. Having said that, I’m not sure how identity-first language works with ADHD. With Autism, we have the word ‘autistic’ but there isn’t an equivalent for ADHD, at least as far as I can tell. I’ve seen people use ‘ADHDer,’ but I find that awfully clumsy and awkward to say. I don’t have any other ideas though.
When it comes to my own circumstances, I am autistic. Absolutely. But I still feel like I ‘have ADHD,’ maybe because it’s still a relatively new diagnosis and I haven’t had the time and headspace to process what it means and how it fits into my constellation of diagnoses and my identity.
Day 28 – Dealing with Boredom
I’m not sure I’m ever bored; I always have too much to do (or I’ve crashed after trying to do too much). The closest state I get to boredom is not knowing what to do and that’s usually because I feel overwhelmed by all of the things I could do. (@roryeckons’ post on this is great though.)
Day 29 – Favourite Memes
I’ve seen a lot of ADHD memes so choosing a favourite or even favourites is hard.
Day 30 – Hyperfocus
I find the concept and research behind hyperfocus really fascinating. I was about a breath away from hyperfocusing on hyperfocus to write this day’s post (when I realised what was happening, I had to laugh) but I managed to reign it in before I really got lost in it. Some of the stories I read were fascinating. Personally, I love it when my brain hyperfocuses, although it can be annoying when I get sucked into something (or repeatedly sucked into one thing and then another and then another) at the exact moment when there’s something I really need to do. But when there isn’t an impending deadline, it can be so fun. I love going down the rabbit hole of a new subject and learning everything I can about it. Sometimes it’s resulted in essays about the subject and sometimes it even turns into a full blown special interest.
Day 31 – Acceptance means…
I don’t know what real acceptance looks like, if I’m completely honest. Yes, we can learn to and practice accepting ourselves and our friends and family can be understanding and supportive but I think acceptance – real acceptance – is bigger than that. Real acceptance is when ADHD is understood, acknowledged for what it is, and accommodated, and done so without persuading or convincing or fighting for it. But I don’t know if that’s a realistic expectation. How can that kind of acceptance be possible when we, neurodivergents, are the proverbial square peg in the round hole, living in a world that is not only built in a way that doesn’t accommodate us but actually disables us further? As I said before, when so many people don’t want the world to change, it can all feel deeply dispiriting. So I don’t know what we do in that regard. But, to quote Amanda Tapping, “The best thing you can do is to make your corner of the world as good as possible,” and so that’s what I think we focus on. We work on accepting ourselves and using the gifts we have to create as much good as possible, for ourselves and for others. Maybe I’m thinking too big when it comes to this prompt but there have just been a number of things recently that have just highlighted how ableist the world can be and that’s been upsetting. And much as it makes me want to flip tables and scream that the world isn’t fair, I want to focus on the good and the good that I can do.
As I said, this is still all very new and it’s a lot to take in. But I do feel like I’ve learned a lot by doing this challenge, both from my research and from reflecting on my own experiences. It’s been a mixed bag – some of it fun, some of it upsetting, and some of it overwhelming – but I’m learning and I’m figuring stuff out and hopefully it won’t be long before I feel a bit more confidant about it and about how I can manage the challenges that come with it.
Who knows, maybe in a year, I’ll do this challenge again and see how much has or hasn’t changed…
Category: about me, adhd, anxiety, autism, depression, diagnosis, emotions, family, favourites, identity, medication, mental health, music, quotes, response, school, special interests, university Tagged: ableism, acceptance, adhd, adhd acceptance month, adhd awareness month, adhd diagnosis, adhd inattentive type, adhd medication, adhd memes, adhd support, anxiety, asd, autism, autism spectrum disorder, autismadhd, autistic, autistic adult, ba, challenge, creativity, degree, depression, eds, ehlers danlos syndrome, emma watson, family, fidget toys, hairpulling, heds, hyperfixation, hyperfocus, hypermobile ehlers danlos syndrome, identity first language, identity language, independent artist, kalie shorr, ma, masters degree, mental health, mental illness, music industry, neurodivergent, neurodiversity, perfectionism, self acceptance, self employed, sensory information, sensory overload, sensory sensitivity, simone biles, singersongwriter, songwriter, songwriting, special interest, special interests, stimming, trichotillomania, university, unsigned artist
Posted on September 26, 2020
Not long ago, I volunteered for a research study into ME/CFS (Myalgic Encephalomyelitis/Chronic Fatigue Syndrome) and part of it involved keeping a photo diary as a visual representation for how my life is affected by my CFS. Obviously my life before the pandemic and my life now are quite different and so the researcher asked me to include pre-pandemic photos as well, to ensure that both experiences were recorded for the study. The collection of photos (and descriptions) I sent her was very long but I thought I’d do an abridged version to post here because it was a really interesting exercise.
(It’s worth noting that this was put together before I started back at university, hence why there aren’t any current references to classes or assignments.)
1. During my BA, I frequently took naps in quiet corners of my university between classes and then at my best friend’s flat when he moved onto the same street as the university. I found the commuting exhausting and the classes were long (some of them three hours) and took a lot of concentration. By the end of the semester, I was often really struggling to wake up to go back for the next class. A few times, I slept straight through both my alarm and my class. Fortunately that only happened a couple of times!
2. I’m currently doing a Masters Degree in songwriting part time and pre-lockdown, I’d go up to London usually once or twice a week for lectures, workshops, and cowriting sessions. This is an example of one of the assignments we had during the first module, which was called Creative Process.
3. Because living alone would be too much for me – I wouldn’t have the energy to look after myself, let alone do anything more – I commute to university (pre-pandemic anyway), involving lots of underground travel and multiple train journeys a week, something that I find exhausting. This is one of the reasons I chose to do my Masters part time because it reduced the amount of travelling and therefore allowed me to spend more energy on the course/work rather than on travelling.
4. At the end of any day that involves hard work or anxiety, I’m utterly exhausted and usually end up horizontal on the sofa or going to bed as soon as I get home from wherever I am. In this instance, I’d just done the assessment presentation for the first module of my Masters – which I’d been incredibly anxious about – and was completely exhausted. Plus the day had involved practicing it in the morning as well as travelling to London and back. I was so tired that I could barely stay awake long enough to eat dinner before going to bed.
5. I spent most of my days out of uni on the sofa, working on music, my mental health blog, or catching up with my diary, a favourite movie or TV show on in the background because I work better with background noise. I’m usually joined by a cat or two.
6. As a singersongwriter, I try to perform as often as I can, both in terms of opportunity and having the energy (I once played three gigs in three days after which I could barely function for over a week because I’d just used up so much physical, mental, and emotional energy). That’s not a common problem – managing my energy around the amount of gigs – as there aren’t a huge number of opportunities with so many aspiring singers in the two cities I perform in, London and Brighton. I love performing. It’s the place I most feel myself, especially if I’m singing songs that I’ve written. I don’t feel any fatigue while I’m performing – I’m feeling so much joy that it’s like I’m flying – and I don’t feel any fatigue until the adrenaline wears off, anywhere between thirty minutes and several hours later.
7. Since getting an Autism Spectrum Disorder diagnosis, I’ve been able to get access to disabled seats at concerts, which does (in certain ways) improve my concert experience. It can be more stressful and it can make no difference at all but at the very least, it makes me feel better. I am in the disabled section and therefore no one can judge me or think that I don’t deserve to be at the show because I’m not dancing around, not ‘enjoying myself enough.’ That makes me feel more able to sit as I need to, which does make the concert experience easier on me and my body. Having said that, I’m not always so sensible out of sheer enthusiasm.
8. Before the pandemic, my best friend, Richard, and I had almost weekly writing and production sessions. My current EP was made almost entirely by the two of us in various rooms in the various places we’ve lived in over the last few years. These sessions are so fun and invigorating and even when it’s a struggle to find the right words or get the production to sound exactly how I want it to sound, it always feels right. I often feel very drained afterwards because it involves a lot of concentration and communication and we often work for four hours or more at a time. We have had sessions that last all day where I’m barely coherent by the end.
1. We have five cats in the house and I’ve been spending a lot of time with them. They’ve always been really good for my anxiety – probably because they are so mindful and live so fully in the moment – but they’ve been an extra comfort during these stressful times. I always try to get a good cuddle in the evenings since I get particularly anxious before bed because I’ve been sleeping so badly and having lots of nightmares during lockdown.
2. I generally drink at least two Red Bulls a day to keep myself awake and somewhat alert, although I don’t think they work as well as they used to. I’m sleepy all the time, but whether that’s from the CFS or the side effects of my anti-depressants or both, I don’t know. I hate feeling like I need to drink it and I worry about the effects on my health but it’s currently the only way I can stay awake for at least most of the day. My Mum and I are investigating other options, or we were until the pandemic brought everything to halt. We haven’t given up though.
3. This is my usual day-to-day view at the moment. I have a desk designed for bed or sofa use so that I can work from the sofa, which is more comfortable for me than working at my desk since I’ve been have problems with pain during lockdown (I’ve been referred to various hospital departments but I’m still waiting for the appointments). I’m usually working on my laptop – on my mental health blog, on my diary, on music stuff, etc – and there’s usually a cat draped over me.
4. I usually have the TV on in the background because I seem to be more productive with familiar background noise, like a familiar TV show or movie. But I’ve also been watching new things during lockdown, both to escape from all of the stress around the pandemic but also as inspiration for my music as not much is happening in my personal life to draw from for songs. This is the very last episode of Agents of Shield, my favourite TV show and I was hugely sad to see it end although the ending was as perfect as the end of something you love can be.
5. Since face-to-face writing sessions aren’t safe at this current time, I’ve been doing all of my writing sessions via Zoom. I’m currently doing about two a week, mostly with my writing partner, Richard. We alternate sessions: one on my songs and then one on his songs and so on. It’s harder work and not quite as fun or productive as a normal pre-pandemic session (who would’ve thought that not being able to point at something would trip up the creative process?) but it allows us to keep creating, which I’m grateful for. I’m always careful not to plan anything too difficult afterwards because these sessions are really draining and after about four hours, my ability to concentrate starts to fade.
6. I’ve been playing a lot of piano during lockdown. It distracts me from all that’s going on, I want to improve my skills, and I just genuinely love playing, especially in the lower octaves. I find them very soothing. I can play for hours without noticing the passing time; it’s lovely. Playing and singing for hours is, of course, tiring but it’s worth it because I get so much enjoyment out of it.
7. Because of my fatigue, I spend a lot of time on the sofa, which can get boring and frustrating, but it’s not so bad when I have my Mum (she’s self-employed, primarily working from home – especially now) and the cats around.
8. Most days consist of sitting on the sofa, working on my laptop. I’m writing a lot of posts for my mental health blog at the moment, preparing for when university starts again and I have less time to write. My Mum often does emails similarly, keeping me company even if we aren’t actively engaging with each other.
So that’s my condensed photo diary for the study. There are, of course, other areas of my life and other areas of my life that my CFS affects, like food and exercise but I don’t have any photos relating to those. For example, swimming is my main form of exercise but pre-pandemic I wouldn’t take my phone further than the locker room and since lockdown began, I’ve been struggling to find a way to swim that feels safe. I may have found one but I’m trying not to get too excited: I’ve missed it so much and I’m so desperate to get back to it, for my physical health, my mental health, and my relationship with my body. I was also reluctant to include other people; my exception was Richard because our work and social media presence are so intertwined. So there are obviously gaps but I tried my best to give an overview. Hopefully it will be a useful contribution to the research.
Category: about me, animals, anxiety, body image, chronic fatigue syndrome, covid-19 pandemic, depression, medication, mental health, music, research, sleep, university Tagged: agents of shield, asd, autism, autism spectrum disorder, autistic, blogging, caffeine, cat, cats, cfs, chloe bennet, chronic fatigue, chronic fatigue syndrome, commuting, concentration, concert, cowriting, daisy johnson, degree, desk, diary, diary writing, disability, disabled, energy, energy levels, exhaustion, family, fatigue, film, friends, inspiration, laptop, lockdown, lockdown 2020, logic pro x, masters degree, me/cfs, myalgic encephalomyelitis, pain, pandemic, pandemic 2020, pandemic anxiety, performing, photo diary, piano, production, recording, red bull, remote writing session, research, research study, research volunteer, richard marc, richard marc music, singer, singersongwriter, singersongwriter life, sleep, sleepiness, songwriter, songwriting, songwriting degree, songwriting session, student, tv show, university, work from home, writing session, zoom
Posted on September 12, 2020
Since the academic year is starting up again, I thought I’d write about my experience with getting support for my Masters Degree as a disabled student. The DSA (Disabled Student Allowance) process can be very difficult so, having been through it twice now, I thought I’d share my experience. I don’t know if I’ve had a good, bad, or typical experience but I thought that simply putting the experience out there might be helpful to anyone at the beginning of this process, to give them an idea of what may happen down the line. As I’ve already said, it’s difficult and tiring but that’s not to say that I would discourage someone from applying. I was just very naive going into it the first time and was blindsided by how complicated and stressful it was; I’m lucky to have had help going through this both times. Having support from sources such as DSA can be hugely beneficial but I wouldn’t want anyone going into the application process unaware so I thought I’d share my experience as I haven’t seen many accounts of the whole process…
I wrote about my first assessment in great detail here, so I suggest reading that but I’ll also sum it up here to make sure I’m sharing the full experience in one place. So… That first assessment was a complete disaster. The assessor was perfectly nice but when we got to discussing what support DSA was willing to offer me, it went downhill fast. They would offer me a laptop, but not one with an operating system required to run the programs I needed for my course because apparently that was a course specific need rather than a disability specific need despite the fact that I – a disabled student – needed them to do my course. They wouldn’t offer me any travel support towards commuting because I’d ‘chosen’ to live at home when I actually had to live at home because of my disabilities. And they have no direct contact with the universities themselves so they couldn’t offer any support through them. So, essentially, they weren’t going to offer me anything because my needs didn’t fit their guidelines, because my disability didn’t fit with their idea of disability. It was hugely frustrating and distressing and I left in tears. I felt completely let down and abandoned.
By the end of the assessment, I was so utterly distressed that the assessor told us that we could appeal, which we did. The second assessment was with a different person, a really lovely woman called Rebecca, and was much longer and in much more depth. We went through everything again in minute detail: from the necessary computer specifications to the exact details of an average university day’s travel. She went through all the possibilities and all the potential outcomes, as well as the potential roadblocks and the reasonings behind them. It was a lot of information but I did leave feeling more hopeful; I really felt like she was on the case, like she was really committed to helping me get as much support as possible. Her report went through several different people before reaching a senior SFE (Student Finance England). It was initially rejected but then, when we provided them with documentation proving I receive PIP (Personal Independence Payment), they changed their minds and granted me a new laptop, software and apps to help with my lectures, independent study, and mental health, and mentoring through the National Autistic Society (although it seems that, due to the pandemic, this service no longer exists). I didn’t get any support for the travel but I’m grateful for what I did get, plus the travel costs haven’t exactly been an issue over the last few months… From that second assessment, it was four months before I received the support I was awarded.
In my experience, the whole DSA process is very slow. It was slow when I went through it during my Bachelor’s Degree and it’s been even slower this time, presumably due to the pandemic. I started this process in January – much later than intended but my mental health was so bad that I couldn’t handle the in person assessment – and didn’t get the equipment until June. Then the laptop that arrived wasn’t the right one and so we had to spend another two weeks – and a somewhat ridiculous amount of emails proving that it was in fact the wrong one – organising the swap, insuring that I got the one that my DSA assessment had determined I needed. A couple of weeks later, the new laptop arrived but setting it up took much longer than it should have. This was due to how the people who’d previously worked on my laptop had set it up, making the transfer of all my files much more complicated and messy. It’s still not as sorted as I would like it to be but it is functional.
Factoring in all of this, had I been doing my Masters in one year rather than two, I would’ve had this equipment for less than a semester before I finished the course. Yes, this was affected by the pandemic, problems with the university Autism support person, and the late start in pursuing DSA but that was due to the reasons I was in need of support so it’s not the most efficient system in that regard: what happens if you’re too disabled by your disability to seek help?
The laptop and software that DSA have provided me with has been invaluable, especially since my laptop was dying a slow death around the time I received the new one. We didn’t get everything we were hoping for but it’s definitely better to have it than to not. So, having now been through this twice, I thought I’d offer some tips that would’ve been helpful to me before going through the process…
I hope this post is helpful for anyone considering or going through the process. I hope I haven’t made it sound too scary. I really do recommend it but I wouldn’t want anyone to be unaware of how difficult and stressful it can be. You deserve to get the support you need and I only want to make that easier, if only by arming you with information and advice. So, if you’re going through it, I wish you the best of luck and I’m rooting for you.
Category: anxiety, autism, chronic fatigue syndrome, covid-19 pandemic, depression, meltdowns, mental health, ocd, tips, university Tagged: actuallyautistic, actuallyborderline, actuallybpd, actuallydepressed, anxiety, anxiety disorder, asd, assessment, autism, autism spectrum disorder, autism support, autistic, autistic adult, autistic student, borderline personality disorder, bpd, coronavirus, covid-19, degree, depression, disability, disability stigma, disability support, disabled, disabled student, disabled student allowance, dsa, dsa assessment, gad, general anxiety disorder, invisible disability, invisible illness, lockdown 2020, masters degree, masters part time, mental health, mental illness, mental illness stigma, neurodiverse, neurodiversity, obsessive compulsive disorder, ocd, pandemic, pandemic 2020, part time, part time masters student, part time student, personal independence payment, pip, sfe, stigma, student finance england, tips, uni, university, university support
Hi! I’m Lauren Alex Hooper. Welcome to my little blog! I write about living with Autism Spectrum Disorder (ASD), ADHD (Inattentive Type), and Hypermobile Ehlers-Danlos Syndrome (hEDS), as well as several mental health issues.
I’m a singer-songwriter (it’s my biggest special interest and I have both a BA and MA in songwriting) so I’ll probably write a bit about that too.
My first single, ‘Invisible,’ is on all platforms, with all proceeds going to Young Minds.
My debut EP, Honest, is available on all platforms, with a limited physical run at Resident Music in Brighton.
I’m currently working on an album about my experiences as an autistic woman.