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 SONG: ‘Honest’

So today I posted a new video on YouTube, talking about the story behind ‘Honest,’ the long journey from idea to final song, and what it was like working on it with the amazing songwriters that are Lauren Aquilina, Richard Marc, and Jonathan Whiskerd. This is the title track and final single of the Honest EP and is a tribute to the honesty in the four songs that came before, as well as to being authentic and honest, even when it’s really hard.

If you haven’t listened to the song yet, you can find it here and the music video will be out soon! I hope you enjoy the song and I hope it’s interesting to hear some of the behind the scenes of the writing process.

As always, thank you for listening to my songs, watching my videos, and reading my posts. It means more than I can say.

The Second Semester of My Masters

So, that’s it. I’ve finished the second semester of my Masters Degree. That’s a very weird thought. I kind of can’t believe I made it. But I did. And I wanted to write about it, like I wrote about the first semester because all of this is weird and wonderful and difficult and part of the journey.

This semester, the module I studied was called Musicology (“the scholarly analysis and research-based study of music”) and my classes were split into two different blocks. The first was a series of lectures, each based around a different artist/songwriter and a specific element of their career, like David Bowie and identity, Prince and authenticity, and Max Martin and his use of melodic math (not all of them were men – these are just the ones that are coming to mind as I write this). I’d expected it to be based more around elements affecting music and it’s creation and consumption, like the history of certain genres, feminism, the constant evolution of technology and social media, rather than specific artists but maybe that was a misinterpretation on my part or simply a different approach that could’ve been taken. I don’t know. It was interesting and I learned a lot but a lot of the reading was very academic which I struggled with, given that I’m having  some trouble with what you’d probably call my cognitive processing. Having said that, we had a great tutor who is really passionate about the module, which made it so much more enjoyable and engaging than a lecture heavy module could’ve been.

The group was larger than I was used to but there were a lot of familiar faces, including my two closest friends on the course. That was definitely a positive, both because I love them and because it helped me to adjust to all the changes. But it was also nice to meet some new people and get to know better the ones that I sort of knew and wanted to know better. So that was really nice, even if it took me a while to adjust to the new group dynamic. I’ve made some good friends from that class, even though it was cut short by the lockdown (I’ll get onto that in a bit).

The second block of classes were practical classes where we discussed in further depth the techniques we’d covered in the lecture class (the technical skills and application) and then we’d go away and write a song based on those techniques. Some of the briefs were really inspiring but on the whole, I found the whole exercise frustrating and a bit of a waste of time. We’d just spent a whole semester working on our creative process and tackling our blocks and weak areas and suddenly we had no time to work on them any further because we were focussing on and trying out other people’s techniques. I just feel like I was finally making progress, particularly in my musical ability (I’ve always struggled when it comes to experimenting with different chords and chord progressions), and suddenly that progress was being curbed dramatically, making it really hard to invest myself in the songs I was writing for this class.

The assessment for this module was a single four thousand word essay on anything related to songwriting. Most people choose a songwriter and then focussed on some aspect of their songwriting or the impact of their songwriting in a certain area, like feminism or the genre they were part of, for example. I really didn’t want to go through the overwhelming stress I went through at the end of the last semester due to lack of clarity around the assignments so I spoke to my Module Leader (who was also my tutor and a tutor I’ve known since my BA) really early in the semester so that I could be as prepared as possible and when I presented the potential subjects I had in mind, he gave me some really good advice: choose the one you’ll learn most from. So I decided to investigate Taylor Swift’s use of imagery and how that links to the authenticity in her songwriting, specifically in her song, ‘All Too Well.’ I thought that would benefit my songwriting the most, since those are elements that are important in my writing and therefore knowing more about them could only strengthen my use of them. So, alongside my classes, I slowly started to gather research about those topics.

I was still researching (I readily admit with the help of my Mum because I found myself struggling so much with the academic language and with my cognitive functioning) when the Coronavirus reached the UK. Classes continued but as a course (there aren’t a huge number of us and we have a group chat on WhatsApp where we’re in constant contact with each other) we discussed the situation and came to the collective conclusion  that we didn’t feel safe travelling to and from uni, as well as being in the busy setting of a university. Our representatives contacted the senior staff and not long after, our classes were moved online. I think it was a week or so after that that the lockdown was announced.

Initially, not much changed for me, apart from the fact that I was no longer commuting to London for my classes. I attended the online classes, did my work, and researched for my essay. Determined not to go through a last week of panic writing, I got to writing as soon as I had enough material and added as I learned more. My tutor was fantastic in recommending sources when I got really stuck (there’s not as much research on imagery and authenticity in song lyrics as you’d think) and giving me some excellent feedback when I finished my first draft, still with plenty of time before the deadline. He’s been amazing throughout the whole module and I’m really grateful. I, again with my Mum’s help, went through the feedback and did the best we could to improve and strengthen the essay before submitting it just under a week before the deadline. So no last minute panicking. I think I did the best I could under the circumstances. But it wasn’t a solo effort. They’re my ideas and my words but I would NOT have been able to do it without my Mum’s support, and gentle pushing on the days where it just felt too hard. I couldn’t have gotten through the researching, the writing, or the editing without her. It is a better piece of work because of her help and I’m so incredibly grateful, both for her help on this assignment and throughout this module but also for her in general, for the ways she has supported me otherwise: helped me manage and protect my mental health, organised my life for me when it took all I had just to stumble through the days, for making sure I ate, even and probably especially on days when I didn’t want to. I’m so lucky to have her and I’m aware of that every minute of every day.

It’s been a weird semester. In a lot of ways it was smoother than the first, both because I was getting the hang of my routine as a Masters student but also because my mental health was more stable, if not necessarily better. I had some great, cherished times with my friends but then they were all suddenly ripped away without proper goodbyes by the lockdown (thank god for video calls). I got to do some really fun cowrites, which were then suddenly stalled for the same reason. They can be rearranged and done by FaceTime or Zoom but it’s not the same: I find it much harder to be creative WITH someone when we’re not actually in the same room (plus the lag time makes singing or playing together a real challenge). I’ll make it work because I love cowriting and I love the people I’m writing with but I do find it harder. I was also really enjoying the lectures and discussions we had in class and online classes just aren’t the same. So what was mostly a pretty positive semester was cut off in its prime and I do grieve the way things could’ve been.

I’m done now. The full-timers have another semester but I’m free until the end of September ish. I’ve completed the first year of my Masters Degree. That’s a very strange sentence to write out. There were many, many moments where I was sure I’d have to defer, despite the fact that the thought made me feel physically ill. But I made it. It was somewhat anti-climactic, given that we’re all in lockdown: I uploaded my assignment, clicked a button, and that was it. Year One done. I don’t think I could sum it – or the emotions I’ve experienced – up if I tried, not without writing a PhD length post. It’s been good and difficult and inspiring and more stressful than I could’ve possibly imagined. I’ve learned a lot and I’ve met some wonderful people. I guess I’ll leave it at that.

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