A Love and Hate Relationship with Autism Spectrum Disorder

Being autistic is complicated (to state the obvious). It’s never just one thing, in my experience at least. It’s not even one thing on one day, one thing in one moment. It’s good things and bad things all wrapped up together and while I can advocate and applaud ‘Autistic Pride,’ I’m not sure I’m there yet. But I can appreciate the good and the bad and so, considering it’s World Autism Acceptance Week, I thought I’d post something about just that: the good and the bad and learning to live with them…


Autism, as we know, is a neurobehavioural condition so the traits associated with it are right down in our wiring, just like the rest of our personality traits: being autistic is at the very core of us and everything else is built upon that foundation. There are some things about being autistic that mean a lot to me, things about myself that I love and value, including…

  1. A NEED FOR AUTHENTICITY – Obviously I can’t control whether or not other people act authentically but I need to be authentic. If I act differently to how I feel, it has a negative impact on my mental health and on my happiness. So, to be happy and mentally healthy, I have to act on how I feel and be who I really am and it’s in following that rule (for lack of a better word) that I’ve had the best experiences and created the things I’m most proud of. As I said, I can’t make that choice for other people but I do think that, on the whole, I get on better and make stronger connections with people who are authentic.
  2. PASSIONATE ABOUT THE THINGS THAT ARE IMPORTANT TO ME – If I love something, I love it with everything I have. I will fully immerse myself in said thing; I actually find it hard not to. That can sometimes make doing normal, day-to-day things hard because all I want to be doing is engaging with this thing I love but I’d rather love wholeheartedly than feel ambivalent about stuff.
  3. LOYALTY – When I care about somebody, I’m all in. I’ll do anything for my friends, sometimes to a pretty extreme degree: like, once I improvised travelling home from Nashville because my flight was cancelled and I’d promised a friend I’d be home for something or like, once I woke myself up every hour to check whether a friend who was in hospital had tried to get in touch because she was scared about being in hospital alone at night. Putting that much into a friendship or relationship does mean I’m more likely to get my heart broken (and it already has been) but like all of the things that matter to me, I’m never going to want to care less about people. I mean, on the bad days, sometimes I do – it would make life easier – but, as a person, I like that I care that much. It’s not always easy (or healthy) but overall, I always think it’s better to care more than less.
  4. STUBBORNNESS – I am stubborn as hell and sometimes it’s a pain; sometimes I can’t let things go even when I want to. But being stubborn has also gotten me through a lot of hard stuff and helped me make a lot of good stuff happen.
  5. IT GAVE ME PURPOSE – All I want to do is make the world a little bit better. That’s all I want. I hate seeing people unhappy or things not working so I’m always looking for ways to help and make things better but the world is a big place with lots of problems and it’s easy to feel overwhelmed and helpless. But finding out that I’m autistic, that gave me a place to start and the more I’ve learned, the more I want to help make being autistic an easier, less harmful, and ultimately better experience. And that’s what I’m trying to do, whether that’s with this blog, my music, or by trying to improve the accessibility and understanding wherever I go.

But there are also things about being autistic that I hate, that I struggle with, that cause me problems, and upset me deeply. I know it’s not healthy to focus on the difficult parts (unless you’re, for example, working on something specifically in therapy or counselling) but I do believe that acknowledging the negatives is important and validating. Endless positivity is not helpful and can end up being harmful so here are some of the things that I hate about being autistic…

  1. LACK OF INDEPENDENCE – With the sensory issues, fatigue, mental health problems, etc, my independence is severely hindered. And as hard as I work to improve my stamina and my mental health and so on, I don’t know how I’m ever going to be completely independent. If it’s even possible. The idea of living by myself is one that I can’t even really imagine ever being realised. And with that being such a standard rite of passage that holds such weight, it’s hard not to feel inadequate or broken.
  2. FEELING FROZEN – I still don’t really know how to describe this feeling and I can’t say for sure what caused it or when it kicked in but I feel very stuck, particularly in the developmental sense. I feel stuck somewhere between teenager and adult; I feel all the pressure of being an adult but I also feel incapable of doing a lot of the things that make it impossible to meet all of those expectations. All of the things that impede my independence come into play here too, like my lack of energy and my issues with pain. Just existing is an exhausting experience; living as everyone else does feels like an impossible dream.
  3. THE SENSORY DIFFICULTIES (WITH FOOD IN PARTICULAR) – Sometimes just being is really hard. Every light is too bright, every sound is too loud, every smell is overpowering, every fabric is itchy… and so on. It’s not like that everyday, at least not for me. But it is like that a lot. And most of the time, it makes doing normal things like eating, drinking, going about my day, etc, just that bit harder. I would love to not be phased by restaurants for example: to not worry about the fact that there’s probably nothing I can eat, or potentially even drink, apart from water (and even then it usually has lemon or lime or cucumber in it). Even small things feel so complicated. I’d love to be able to just meet a friend for coffee and that be that but between whatever we eat or drink, how loud it is, and all of the other sensory factors (and that’s not even thinking about all the sensory stuff involved in the travelling), it’s just exhausting. And I wish it wasn’t.
  4. THE RESULTING MENTAL HEALTH PROBLEMS – While we will never know for sure, I (and the mental health professionals that I trust and have worked with for years now) strongly suspect that many of the mental health issues I deal with, are at least partly down to being autistic, and specifically, being diagnosed as autistic so relatively late. Anxiety, depression, OCD, BPD, and ADHD are all comorbid to Autism. Maybe some of them would have developed on their own but I’m sure the Autism did not help and the amount of distress that these problems cause isn’t something I can easily put words to. Every day is a struggle because of them. Let’s leave it at that for now.
  5. THE LACK OF UNDERSTANDING, FROM EVERYONE (INCLUDING MEDICAL PROFESSIONALS) – Everywhere I go, I have to teach people about Autism, even the most basic stuff. From friends, to teachers, to doctors, even to people whose entire job revolves around accessibility. No one seems to know anything, or at least anything beyond the basic stereotypes. There’s almost no decent representation out in the world, in the media (which makes it very easy to feel alone and/or broken) – the vast majority of it is harmful. So many people still don’t even know that Autism manifests differently in girls. Autism is a complicated thing so I don’t mind helping people understand it, understand some of the nuance, but I hate how bad the general understanding is, especially when it’s people who should know better (when it’s part of their job, for example). This is why so many people are diagnosed so late and struggle so much: even the people who should have a working knowledge of Autism don’t and it’s really not good enough.

So, this was a bit more exposing than I’d expected when I started writing. But there it is. Almost a decade later and I’m still figuring out what it means, to me, to be autistic. It’s complicated and it’s hard and some days I’m really proud that this is who I am. I guess the goal is to have more of those days.

Behind the Mask: Autism for Women and Girls (TEDx Talk)

While I have talked about my experience of being autistic (and will be doing more of this week), I also wanted to share this video because it’s a very good summary of Autism in women, covering multiple important topics.


In this TEDx talk, Kate Kahle talks a little about her experience as an autistic woman but she also talks about some of the history behind Autism and Asperger Syndrome, the evolution of the different labels used in relation to Autism, the differences experienced by women, masking, special interests, the mental health implications, and some of the ways to support autistic individuals.


The rest of my posts for this week are more substantial but I really wanted to share this video this week. I wanted to post a range of things: word, photos, and video. We all process information differently and I wanted to make sure there was something for everyone.

The Fifth Semester of My Masters

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:

  • As I mentioned in my post about the previous semester, I was part of the judging panel for a songwriting competition. That ended up being a lot of work but fortunately I managed to get it all done in time for this module to start. The end was pretty stressful because our deadline was suddenly brought forward but it was a great experience and I learned a lot from it; there were so many amazing songs and so many talented songwriters and they’re all still pretty young. I hope they keep writing; some of them I’d love to see pursue songwriting as a career. The final winners weren’t the ones I personally would’ve have chosen but I guess that’s what happens when you’re judging by committee and there are so many good songs to chose from.
  • I also submitted work to a competition: three songs, two already written and one that I wrote as part of this project. I was supposed to find out whether I’d made it through the first round in August, I think, but, because they’re also an organisation and not just a competition, COVID has thrown a wrench in the plan and so the whole thing has been delayed until February. So I guess I won’t know anything for a while.
  • One of my tutors is doing a research project on the many reasons why we write songs and I volunteered to share my thoughts. In mid July, a handful of students came together for a Q&A panel about our personal songwriting intentions, processes, and experiences. It was really interesting with a pretty wide range of reviews and even a couple of debates. Hopefully some of what we said was useful for the research.
  • Also in July was the Taylor Swift focussed musicology conference I mentioned in my post about the previous semester and I presented my paper on some of Swift’s lyric writing techniques: her repeated use of certain imagery and the ongoing themes throughout her discography. I loved researching it (and hope to research it further in the future) and writing the paper – so much so that it ended up being over ten thousand words long and I had to do some major editing work. Presenting the paper – I ended up recording it and presenting it in video form because I was so nervous – was very nerve-wracking: everyone was lovely and very welcoming but I was just so aware of how inexperienced I was. But it went really well and I really enjoyed the whole conference; there were so many interesting papers. I hope it’s a conference that can happen again (not just because I have so many ideas that I’d love to research but because Taylor Swift is so fascinating on so many levels; there’s a lot that can be learned from her, not just around music but in business, in the development of pop culture, and so on). 

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.

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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.