Posted on September 19, 2021
The time has come to sum up the final semester of my Masters. I am done. That’s sort of unbelievable. Given everything that’s happened since I started the course in September 2019, the end of the Masters always felt so far away and although I have lots of plans, I do feel a bit lost now that all of the work is done. Maybe it’s because I haven’t received my final grade or because I haven’t actually graduated yet; maybe once those things happen, the experience will feel a bit more… finished. It was always going to be weird – I’ve been going to this uni on and off for the last seven years – but knowing something and actually feeling it are so different.
So, here is my final semester review.
The final semester of my Masters course involves a largely independent project called the Major Repertoire Project and as long as you’re developing your songwriting skills and knowledge in some way, you can pretty much do whatever you want. People have done projects exploring identity, exploring their heritage, writing song cycles or musicals, digging deeper into their own songwriting and pursuing an artist project like an album, experimenting with newer applications of songwriting (such as in various therapies), and so on. It’s a fascinating module because everyone ends up doing something so different and so interesting. And after a spending a year or two focussing on their craft, the songwriting is so incredible; the final works that I’ve heard are amazing. It would probably take a month but I would happily listen through everyone’s projects.
For my project, I chose to explore my experiences as an autistic woman through songwriting, attempting to translate those experiences both through the lyrics and storytelling and the execution of the song, from the structure to the arrangement to the production and so on. I wanted to write songs that autistic individuals would hopefully relate to and that neurotypical individuals would hopefully gain some insight from. But while the overall goal was to create a body of work, a large part of the project involved researching our chosen area – Autism, in my case – responding to the research (sometimes that was through practice and sometimes it inspired specific songs), and reflecting on my songwriting process and how it was evolving during the project.
The module officially began in the second week of May but I’d already started working on it: I’ve been thinking about this project ever since I applied for the Masters so I was super excited to finally start doing it. But I’d barely begun when I started getting debilitating migraines that lasted for days at a time and resulted in several ambulance visits because the pain was so bad. We eventually traced the source back to one of my teeth: the emergency dentist thought the nerve was dying and diagnosed an abscess. I was top priority for an extraction and given antibiotics (which I had to have a second round of when it flared up again midway through the semester). Fortunately my university granted me an extension – giving me back the time that I’d lost – but it was a flexible extension in case I suddenly got pulled in to have the tooth taken out and needed some recovery time. Due to the long waiting list (and bear in mind that this was the waiting list for emergencies), I still haven’t had the tooth taken out and while the antibiotics and some good painkillers have prevented any more similar episodes, I’ve still been dealing with some tooth pain and migraines. So that hasn’t been ideal.
We only had four classes over the semester but since everyone was researching something different, they weren’t exactly classes. They were more group discussions where we’d talk about how our research and writing was going, whether we were struggling in a particular area, what we could do if we felt like we weren’t fulfilling one or more of the overall objectives, and so on. We had individual supervisors for the more specific guidance and problems whereas this was more general and we were able to share with each other what we’d found helpful, etc. These classes were online but we were finally able to come into the building. With most of the other courses finished for the summer, it was pretty empty and I felt safe there; you had to test negative just to get in the building and with no one around (pre-COVID, it could be a bit of a crush at times), my pandemic anxiety was a lot lower than it usually is when I’m out in the world. Being there after so much time and getting to see some of my friends again made me positively giddy! And there were some friends that I was actually meeting in person for the first time, which was just wonderful! I’m really going to miss it; I mean, I’ll pop in now and then for events and stuff but I’m really going to miss it being part of my day-to-day, week-to-week life.
Anyway. My supervisor was truly awesome. We had fortnightly and then weekly sessions and she was fantastic, not only with the academic stuff but with helping me to manage my anxiety, the things that tripped up my neurodivergent brain, and so on. And while we worked together well, we also had a lot of fun: we went on some epic tangents and there were multiple conversations that we had to mentally bookmark for later in order to actually get our work done. We got on really well and our sessions were always fun and thought-provoking, as well as helpful. I hope that this isn’t the last time we get to work together.
I obviously know a lot about Autism already so, after finding sources for that information, I started writing songs about my experiences and researching Autism further. Having the foundation of knowledge that I did, I think allowed me to research both more deeply and down different avenues since I didn’t have to spend so much time on the basic knowledge. And some of that research, from academic papers to anecdotal stories to art made by autistic individuals, sparked some really interesting song ideas (for example, I ended up writing a love song after watching Love on the Spectrum, which I found both upsetting and deeply depressing as an autistic person).
I don’t want to give too much away about the songs because I hope to release them but, over the semester, I wrote eighteen songs with a handful more that still need finishing. For the most part, I wrote alone – first because it was more convenient and then because I felt like my experiences were conveyed with more clarity that way – but I did work with a few different people, when I was struggling with a concept for example. I wrote with a couple of my friends – Richard and Luce (known as LUCE) – but I also wrote with new people that I’ve met during my time on the Masters – Luke (known as leadmetoland), Phill Vidler, and Katherine Moynihan – which was fun and exciting. It was nice to do both: I love cowriting and the back and forth of ideas but doing so much writing by myself really restored my confidence; I’ve spent so much time cowriting over the last two years and really not that much solo writing so I was nervous when I started to write alone again but after a while, it started to feel really good and that was really exciting.
But while I didn’t manage to write with Richard as much as I’d originally hoped to, we had many production sessions, mostly over Zoom. While I’d never considered the production unimportant, the project evolved to a place where the production was just as key to the representation of my autistic experiences and the emotions attached to them as the lyrics conveying the story or message. So the two of us spent a lot of time working on every little detail. While I’ve always been involved in the production choices of my songs, I’ve also always been aware that Richard knows a hell of alot more than me so I was happy to defer to his judgement. But with this project, for the first time really, I was taking the lead on production decisions – on occasion, I had the whole arrangement and production planned out before the session. But I felt more like a producer than I ever have: I was coming up with ideas that actually worked from idea to execution; I was able to pick out specific instrument, arrangement, and effect details in a way I haven’t been able to do up to now; and so on. Along with the songs themselves, that’s something I’d really proud of. I really feel like I grew as a musician and as a producer.
I absolutely loved working on my project. To be researching and writing songs about something I’m so passionate about was just so creatively invigorating. That’s not to say it wasn’t hard though. There were, of course, periods of doubt, insecurity, and anxiety over the academic elements and whether I’d be able to do as good a job as I desperately wanted to. Plus, some of the experiences I was digging into were pretty raw and writing those songs did get difficult, especially since I was suddenly doing the project without the support of my therapist, something I’d put in place to help me manage that. But apart from one bad bout of depression, my mental health was – somehow – reasonably stable (apart from my day-to-day, ongoing anxiety). As I said in my previous post, I think it was the constant creating (and creating things that I’m really proud of) that did it, that kept everything on a reasonably even keel.
Having said that, my chronic pain was almost constant, worse than it’s ever been. There were periods where my knee, for example, was so painful that I could barely walk and my back so painful that I could barely move. My Mum (once a massage therapist) said that it felt like I was storing rocks in my muscles. It certainly felt like they were made of concrete. Maybe it was my anxiety around the project, I don’t know, but the pain was keeping me up at night. I also struggled on and off with my hands and wrists, presumably from all of the typing, piano, and guitar playing I was doing. God, my various health issues are like freaking buses sometimes. I’m still waiting for physiotherapy and hydrotherapy, have been for months. I’ve just started with the Pain Clinic but one appointment was never going to change anything before the Masters ended. So all I had were various painkillers that were only sporadically helpful.
But my biggest ongoing obstacle was my difficulty concentrating, which I’m assuming is due to my (still untreated) ADHD. Staying focussed on my work was very difficult; I exhausted all of my energy trying. It felt like my concentration was so delicate that the smallest distraction would shatter it and then there was no way to know when it would come back; I felt like I was clinging onto it by my fingertips. So I couldn’t stop (really not healthy, I know). I couldn’t waste a second of it. That was super stressful and I often ended up sitting at my computer for hours and hours; there were multiple fourteen hour days, some successful, some not. People kept telling me to at least take a day off now and then but I just couldn’t. I was too scared of losing my concentration when my hold on it felt so tenuous.
During the semester, I also had a few other commitments; it was awkward timing but they were all great opportunities:
In the last month, my approach reached a new level of intensity. I was working constantly, quickly when my concentration was good and agonisingly slowly when it was bad. But I didn’t stop. I even worked while I ate. I know that’s not a healthy way of doing things but I was just so terrified of getting a grade I wasn’t happy with, that made me feel like I was letting everyone down, myself included. If I wasn’t working, I felt guilty so I just kept working.
Finally it came time to try and distill all my work down to the most important points for the final presentation. My god, that was hard. Months of research, almost twenty songs, and a lot of reflection on my creative process all into an hour… Or, as I said, the most important points. But figuring what those important points were was a real struggle. Throughout the whole Masters, I felt like the module objectives were designed to trip me up – not me specifically, of course, but anyone reading them. Reading them felt like trying to interpret another language that you barely understand so I felt like I was just waiting to discover that I had it all wrong. Maybe it was my autistic brain, I don’t know. My supervisor was great regarding this anxiety but two years of feeling that way made it a hard feeling to exorcise. So I just did what I know how to do and worked through it, hoping it would be enough. And on the 6th September, I had my final assessment. Two tutors watched my presentation and then, after a brief discussion, they asked me a couple of questions, both of which were pretty straightforward to answer. And that was it. The project and the semester was over.
According to the usual rules, the results will be released in twenty working days, although I don’t know if that will apply given that my assessment was so much later than everyone else’s and they all received their results the day after I presented. So I’m just waiting to hear. I’m trying not to stress about my grade but, as I said in my previous post, I’m finding it hard. I’ve been working relentlessly – with so many obstacles to navigate – and the idea that that still wasn’t enough to get the Distinction I want so badly does upset me. I mean, I’d get over it in time but, yeah, it would be distressing. I just really hate the idea of thinking, “I could’ve gotten a distinction if I wasn’t autistic or had ADHD, etc.” I know that that’s not a healthy way to think but the standards and expectations I have for myself are somewhat warped, something that I think is due to the late ASD diagnosis and the clash between twenty-ish years with neurotypical standards and then having to adjust those expectations in accordance with what I now know is a neurodivergent brain. It’s a mess basically. But I’m waiting for the results – they should be out on the 6th October – and hoping desperately that it went as well as I hope it did.
While the ‘project-for-assessment’ is over, I definitely want to keep working on the songs, write some more on various elements of my autistic experience that I just didn’t manage in the timeframe, and then, hopefully, release it in some form. That’s the dream. I’m so proud of so many of these songs and I really, really want people to hear them and hopefully find strength or comfort in them. We’ll have to see because these projects are just so expensive to put together, from the production work to making music videos to all of the marketing.
And while this is a topic for another post, it should be acknowledged that the semester ended on a very sad note. I found out the morning after my presentation that my Granny had died. Between that news and an intense semester’s worth of work and my brain is just at overload. I can’t tell if I’m not feeling anything or feeling everything. I don’t really want to get too deeply into all of this, partly because I’m not ready and partly because, if only on my blog, I want to keep this semester and this project separate. I really just wanted to mention it in the context of all the emotions I’m dealing (or maybe not dealing) with right now.
So that was the final semester. But there’s still a couple more chapters in this story, so to speak. Graduation will hopefully go ahead as planned – in person – in November and then who knows? I guess we’ll have to wait and see.
My apologies if this post is a bit all over the place: everything’s really hitting me and I’m just exhausted but I wanted to get this out while it’s still fresh.
Category: adhd, anxiety, autism, covid-19 pandemic, death, emotions, family, heds, meltdowns, mental health, music, research, sleep, therapy, university, writing Tagged: adhd, adhd inattentive type, anxiety, anxiety disorder, asd, assessment, attention deficit hyperactivity disorder, autism, autism awareness, autism in women, autism spectrum disorder, autistic, autistic adult, autistic student, chronic pain, classes, collaboration, concentration, conference, coproducer, covid test, covid-19, cowriting, deadline, death, dentist, depression, ehlers danlos syndrome, emotions, exhaustion, extenuating circumstances, final assessment, final presentation, final project, focus, friend, friends, gad, generalised anxiety disorder, grades, graduate, graduation, grandmother, grandparent, granny, grief, heds, hydrotherapy, hydrotherapy referral, hypermobile ehlers danlos syndrome, inattentive type, loss, major repertoire project, masters, masters degree, masters degree in songwriting, masters degree year two, masters part time, mental health, mental illness, migraine, migraines, musicology, musicology conference, neurodivergent, neurodiversity, online classes, pain, pandemic, pandemic 2020, pandemic anxiety, part time masters student, physiotherapy, presentation, producer, production, research, research conference, research project, self worth, singersongwriter, songwriter, songwriting, songwriting competition, songwriting process, songwriting project, special needs dentist, specialist dentist, tooth extraction, tooth pain, trd, treatment resistant depression, university
Posted on September 12, 2021
And that’s that. I’ve finished the final module of my Masters and therefore the Masters itself. I don’t know what my grade is for the module or for the whole course yet but frankly, I’ve got a lot to process before I can even really think about the grades and graduation.
Looking back at a similar post before the module started, I was excited about the project but nervous about my health, mental and physical, and whether it would prevent me from doing everything I needed to do, from being able to enjoy the process. And those were valid concerns so I thought, having written a post about how I was feeling before the module started, I’d write another now that it’s ended – like bookends.
A lot has happened since the beginning of May.
Over the last four months, I’ve spent almost every day working on my final project, researching, writing songs, and working on the production of an album. It’s been incredibly intense and now that it’s all done, I’m utterly exhausted, both mind and body. And while, for the most part, I loved it, it’s also a relief to be free of some of the anxiety around it (I’m still struggling with my anxiety around the grade). Having said that, I feel strangely lost and untethered now that I don’t have this big thing to focus on. I know that I need a break but I am looking forward to the next project, whatever that may be. I’m always happier when I’m doing things.
My mental health was pretty good for most of the module, surprisingly so. By my standards at least. I think that the constant creating and the creating of stuff I’m proud of really helped. I had one particularly bad episode of depression, plus a handful of smaller ones, and my anxiety was pretty constant but that’s normal for me. It got very bad in the last month, which was hard to manage – trying not to let it destabilise me was a bit of a battle in itself. It hasn’t quite faded yet. For various reasons, I didn’t have any access to my therapist, which was an unforeseen difficulty and that made things a lot harder than I’d expected them to be.
I also really struggled with my concentration. I’m still not getting any support for my ADHD (something that I hope will change soon but I’m still so frustrated that I couldn’t get any help with it during my Masters) so staying focussed on my project, on my research, took all of my energy. It was exhausting. I felt like my concentration was so, so fragile that a single moment of distraction would break it and then it would be impossible or would take days or even weeks to get back. So I couldn’t stop. Not for anything. That was very stressful and resulted in many, many long days. Sometimes I’d work all day without moving (not healthy, I know) and end up going to bed very late. And then, of course, I couldn’t sleep because my thoughts were racing. So it did a number on my sleep schedule too; I’m surprised I’m not nocturnal at this point.
That, plus the general fatigue I deal with day to day, meant I was tired all of the time. I’ve drunk an obscene amount of Red Bull (my antidepressants make me really drowsy, just to make things even more difficult, although I may be changing medications soon, which hopefully won’t have the same side effects) – I am beyond sick of the taste of it. But it got me through and I’m grateful for that. I will however be grateful to never drink it again (hopefully). And I’m really looking forward to getting both some proper sleep and some proper rest now that my work is done.
I also mentioned back in June that I’d been having migraines that seemed to be being caused by an abscess in one of my teeth. Since then, I’ve been on antibiotics twice, continued to have migraines, and am still waiting to have the tooth removed, a decision that was made at the appointment in June. Given how much disruption it was causing though, I did get extenuating circumstances which allowed me some extra time (although it wasn’t really extra since it was making up for time lost to a medical problem) to cope with those problems. It’s not bothering me presently which is a relief but I’m more than ready for them to take the tooth out, just so that they’re not even problems I have to think about.
While I managed to keep swimming twice a week – a routine I’ve been trying to maintain to create a solid foundation for my crappy joints – I was in almost constant pain throughout the module. At times, my right knee was so painful that I couldn’t walk on it and my back has been consistently painful; my Mum, who used to be a massage therapist, said it felt like trying to massage rocks and now that it’s all over and I’m trying to relax, the muscles feel like their made of concrete. Which is about as pleasant as it sounds. I’ve also had great trouble with my hands and wrists what with all the typing I’ve been doing. So, all in all, I’ve been a bit of a mess. I haven’t had any support for this – the hEDS – either; I’ve been waiting for physiotherapy and hydrotherapy since December 2020 officially and May 2020 unofficially. I’ve just had to try and get by on various painkillers, none of which have been all that effective.
Despite working practically non-stop, I got everything for my project done just in time for my final presentation. My assessors were positive, which I’m trying to hold on to in the wake of my anxiety around the final grade. I’ve been really trying not to attach my self worth to my grades (something I’ve always really struggled with), or at least, lessen the power my grades have over me but I can’t help the fact that I really want to do well. I’ve worked so hard – with so many obstacles – and the idea that that still wasn’t enough to get a Distinction would be upsetting. I’d get over it but it would still be upsetting. I never want someone thinking, “Oh, she mustn’t have worked hard enough.” Or worse: I never want to think, “Oh, I would’ve gotten a distinction if I wasn’t autistic or had ADHD or whatever” thoughts left over from my late diagnoses and the resulting difficulty I have in setting standards and goals for myself (more on that in another post). This anxiety isn’t helped by the fact that I keep thinking of things that I should’ve included in my presentation. My brain clearly hasn’t quite processed that the module is over.
And then, just when I thought I could relax, the world tipped under my feet. The next morning, my Mum told me that my Granny had died a few days earlier. She was ninety-three. Having barely started to process the end of my two year Masters and intense final project, this news was just too much for my brain. A few days on, I feel like I’m bouncing pretty erratically between two states, the first being this weird bubble where nothing can touch me and the second being, ‘if I stop thinking or talking or moving for even a second, I’m going to completely fall apart.’ It’s surreal and exhausting and sad. I’d like to write a piece about her at some point because she was such an incredible woman but I can’t really write more than this right now but it felt really important to at least acknowledge what’s happened because it’s so big and so important.
I don’t think there’s anything else to say right now. I’ve barely been able to wrap my head around this last week: my final presentation, the ending of the Masters, Granny, and everything that’s ahead given all of these things. It’s a lot to take in; I’m exhausted. I’m just taking it day by day.
Category: adhd, anxiety, autism, covid-19 pandemic, death, depression, emotions, family, heds, medication, mental health, music, research, sleep, therapy, university, writing Tagged: actuallyadhd, actuallyautistic, adhd, adhd inattentive type, adhd support, album, antibiotics, antidepressants, anxiety, anxiety disorder, asd, attention deficit hyperactivity disorder, autism, autism spectrum disorder, autistic, autistic adult, autistic student, break, concentration, death, depressed, depression, drowsiness, drowsy, eds, ehlers danlos syndrome, exhaustion, extenuating circumstances, fatigue, final project, focus, generalised anxiety disorder, grades, grandmother, grandparent, granny, grief, heds, hypermobile ehlers danlos syndrome, hypermobility, identity, inattentive type, late diagnosis, loss, masters, masters degree, masters degree in songwriting, masters degree year two, masters part time, medication, mental health, mental health break, mental health update, mental illness, migraine, migraines, new album, new music, part time masters student, processing, recovery time, red bull, rest, self worth, side effects, singer, singersongwriter, singersongwriter life, sleep, sleepiness, sleepy, songwriter, songwriting, therapist, therapy, tired, tooth extraction, tooth pain, writing
Posted on April 1, 2021
When my Mum was answering my questions in the previous post, she was inspired and suggested she interview me in return, with similar questions. I was up for that so here goes: this is the mother of a young adult with Autism Spectrum Disorder interviewing her daughter with said Autism Spectrum Disorder…
Briefly, what has it been like for you to get a late diagnosis?
In some ways, it was such a relief. I’d been struggling for such a long time and not having a name or label caused me a lot of anxiety and made it difficult to get any support. So in that sense, it was great. It obviously hasn’t changed the fact that I struggle but I have more confidence – it had been going on for so long and had become so complex that I did worry I was making it up and actually causing my problems – and the support allows me to work on the areas I struggle with, managing them, decreasing the intensity, and creating solutions.
But I don’t want to imply that it’s been a hundred percent straightforward because it hasn’t. For twenty years, I operated under the assumption and expectations (from myself and others) that I was neurotypical and would go on to have a neurotypical life, meeting the usual milestones. I’d always held myself to a high standard and that wasn’t really a problem until I was finishing school: learning was something I was comfortable with and excelled at and my social issues were just assumed to be shyness. But then life started to get harder, with bigger and more serious demands, and I struggled more and more but still held myself to the same high standard. I still do. It’s very deeply ingrained. So it’s really, really hard to accept that my life is never going to look like what I expected or like the lives of my peers.
Having discussed how I’ve been your advocate at various times and in various situations, where did that need come from? How has that made you feel both pre and post diagnosis? Are there particular times where it has felt more necessary than others?
I’ve definitely lost count of how many appointments we had with various people where I would explain what I was going through and how much I was struggling only to be told things like, “All teenagers struggle,” and “Well, you’re showered and dressed so you’re clearly coping.” There’s so much I could say about those experiences alone but after a while, those appointments made me so anxious that I just couldn’t talk. At all. I needed someone who could tell my story for me when I wasn’t able to and since we had (and do) talk about everything, you were always able to give all of the information and spare me at least some of the anxiety involved in those appointments. Pre-diagnosis, you were the only one a hundred percent behind me and I honestly don’t know what I would’ve done without that. Best case scenario, I don’t think I would’ve gotten my diagnoses and the worst case scenario doesn’t bear thinking about. If I hadn’t had you in my corner, researching and reaching out and pushing for answers, I certainly wouldn’t have gotten this far. Post-diagnosis and in the time since, I think I’ve grown in confidence and have needed it less but there are still times that I’ve, at the very least, needed back up. There are many situations that I do now feel able to manage myself but in times of great stress or anxiety, having someone on my side, someone ready to step up and take over when I get overwhelmed or it all becomes too much, is just so important in moving life forward. I like to think that I get a bit further every time before needing you to take over but I am also aware that I may never be able to completely handle these kinds of situations when under great stress.
Having answered this question from my perspective, what about you? What would you would consider to be the positives and negatives of having Autism Spectrum Disorder?
I think I’ll start with the negatives first. That’s not a particularly optimistic start but the negatives do, at this point in time, feel more overwhelming and painful. The high levels of anxiety and overwhelming intensity of my emotions can make it really difficult to function day-to-day, plus both are incredibly exhausting. All of that is really hard. I also often feel very different from – and behind – my peers, which can feel extremely distressing. Not really in a competitive sense but because I really want to experience all the things they get to experience and often take for granted, knowing that I may never get to have those experiences.
Onto the positive things… Admittedly this perspective is harder because I am in a period of feeling that my ASD takes more from me than it gives back. Hopefully one day I won’t feel this way. But for now, positives… Although the strength of my emotions can be overwhelming, I definitely prefer it to the idea of ambivalence or apathy. And while the negative emotions are awful, the positive ones are like nothing else in life. I imagine it’s like going from grainy black and white to high definition colour: when I’m happy or passionate or excited, I feel like I’m glowing brighter than the sun. I don’t know if that makes sense but it’s how it feels. I can also get completely immersed myself in something: it doesn’t even feel like I’m focussing because I don’t feel like I’m in control, but I think people would call it deep focus. I can work on something for hours and fours. For example, I once started working on a song at eight in the morning and when I next looked up, it was dark and my hands were shaking because I hadn’t eaten for over fourteen hours. I hadn’t even noticed the time passing. And I guess another positive is how seriously I take things – my relationships, my commitments, my words, and so on. Nothing is flippant to me. I mean, I can be funny and silly but I take life seriously. Everything that I invest myself in matters so deeply to me and I never want to give anything less than my best. All of these things do have negative side effects if they go too far – which they often do – but overall, I consider them to be positives.
How do you think things would’ve been different if your ASD had been recognised when you were younger?
I mean, who knows? I don’t think we can ever really know the answers to questions like these, although I’m fascinated by the ways life might’ve turned out had this happened or that not happened. I’m not sure, to be honest; there would obviously be so many differences. But the biggest one that sticks out for me is that I wouldn’t feel so stuck between a neurotypical world and an autistic world, especially identity wise. I often feel like I have two sides to myself constantly pushing against one another and like I’m trying to find a place in the world where I don’t just have to be one part of myself, where I can be all of myself. I mean, I know everyone’s trying to find their place in the world and that most people don’t often get to be their whole selves but I feel very conscious of the two worlds that I don’t quite fit into and end up feeling like I don’t fit anywhere. So I think the obvious thing for me would be that I think my identity wouldn’t feel so fractured because growing up knowing I was autistic would’ve meant that my personality and my identity evolved with that already present, rather than trying to fit everything together later on, if that makes sense.
How do you feel about taking various medications and going to different forms of therapy for years now? How do you think those have affected you?
It’s an ongoing, exhausting part of my life and I do sometimes wonder whether any of it has made any difference. But then I think about it properly and despite all the awful medication experiences, there have been some really great ones: I wouldn’t have made it through my BA without the Phenelzine, wouldn’t have made it this far through my MA without it. And sometimes it feels like therapy only uncovers more problems but then I remember how many empowering conversations I’ve had with my therapist, how many strategies I’ve learned to help me manage not only my struggles but my life in general. There have been more ups and downs than I can count but I honestly don’t know where I’d be without them.
What do you think the hardest part of living with ASD is?
This is a really difficult question to answer. Part of me wants to answer with ‘living with ASD’ but that’s not helpful. There are so many things I could say: the anxiety; the fatigue; feeling like I blend in enough to fit in casually but feel too different to fit in on a deeper level; my limited ability to be independent; sensory sensitivities… The list goes on. But I think, overall, the hardest part is feeling like the life I want to have is never going to be possible for me and I don’t mean in the being-a-musician-is-a-risky-career-path way; I mean that, as an autistic person, I will not be able to do the things required of me to do music. It’s a terrifying prospect because I cannot imagine my life without music at the forefront. There seems no point to living otherwise. I know that sounds overdramatic but given the intense emotions I experience as part of being autistic, that is just how I feel. To an overwhelming degree.
How do you feel your life as an autistic person is different to those of your neurotypical peers?
I can absolutely recognise that we do go through a lot of the same things, albeit often in different ways and according to different time frames. But then there are definitely significant differences between my life and the lives of most of the neurotypical people around me. I feel like my life is smaller, limited. I’m sensitive to food, loud noise, large groups of people, and I struggle with low energy levels, which all make it difficult to keep up socially, so I often feel like I’m on the outside. I also find myself constantly comparing my level of independence to that of my friends: so many of them – if not all of them – have moved out (even if they’ve moved home during the pandemic), lived with friends or alone, have jobs, operate as independent adults. And I’m just not able to do that. Every day, I have to ration my energy down to the smallest sliver and it’s just not physically possible for me to do any of those things with the amount of energy I have to allocate out to all the tasks required in a day. And that’s as things are now, living at home, let alone if I was living alone and taking care of myself without any help. These things are some really big issues for me and I do find that I isolate myself sometimes so that I’m not being constantly reminded of them.
Are your relationships with your neurotypical friends different to your relationships with your autistic friends?
I think there probably are – to a certain degree, at least – but for the most part, I think it’s not that different to how we relate to each different social group we interact in. We connect with different people for different reasons so while the underlying connection to my university friends is music, the underlying connection to my autistic friends is based on our shared experiences as autistic women. But all of those connections are strengthened by other things, other commonalities and time spent together. So while I initially connected to my autistic friends because we are all autistic – and those similar emotions and experiences and struggles are an important part of our relationship because we can connect to and support each other in a very specific way – our friendship has grown a lot from there, just as every friendship grows.
How do you feel parents can be most supportive to a young adult with ASD?
I have a couple of things I’d like to include here, things that have been invaluable to me over the years:
So there we go. If you guys have any other questions for me or my Mum about living with and managing my ASD and mental health problems, please get in contact and we can always do another of these posts. I hope it was helpful!
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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.