Posted on April 10, 2021
I love a good week-in-my-life post and I try to do one every semester or so, since that does tend to shake my life up. Now, the semester is coming to a close and the assessments are in sight so I’m busy with uni work, with cowrites, and with health stuff. There’s a lot to juggle right now.
The week in this post begins on Monday 15th March and ends on Sunday 21st March 2021. I’d thought I’d have this up on the blog earlier than this but when I was writing it, I wasn’t thinking about the timing and then there was Autism Awareness Week to post for. But here we are, just a bit later than planned.
I struggled to wake up with my alarm. My sleep isn’t great at the moment and my alarms really aren’t doing their job. Most of the time I’m sleeping through them completely, which isn’t exactly ideal.
For a moment, I forgot that it had been the Grammys the night before and then suddenly it came rushing back. I went online and found out who won what. I’m sad Ingrid Andress didn’t win any of the three she was nominated for, but I am glad that The Highwomen (Brandi Carlile, Natalie Hemby, Lori McKenna, and Maren Morris) won Best Country Song, although Maren Morris won’t get a Grammy since she wasn’t a writer on the song. And then there’s Taylor Swift. I’m so, so happy that she won Album of the Year for folklore. I think she deserved more than just the one award – I mean, how did she not win Best Pop Duo/Group Performance with ‘exile featuring bon iver’?! – but I do also think it’s a good thing when there’s no one person that walks away with five or six, meaning more artists/songwriters/producers/etc are being recognised for their work (I’m not saying the Grammys are fair – we know they’re problematic – but this is one aspect that makes them fairer).
I’m so happy for her, especially after everything she’s had to deal with with her masters and still working through the fall out of everything that happened/came to a head in 2016. And I know I’m biased but it’s pretty widely acknowledged what a big deal folklore was (and is); it was absolutely the album of 2020.
I was so busy catching up with the Grammys news that I was late for my online Occupational Therapy session. Fortunately my OT therapist understands my passion for music so she didn’t mind. We ran through my exercises and she wants me to do them for a little bit longer before moving on to a new set of exercises. Having fallen down the stairs at the weekend, she warned me to take things gently – to take a bit longer if that felt safer and more comfortable – and said that an injury, even to an unconnected area, could cause a general flare up of pain. So hurray for that. Everything hurt from the fall but I figured that that was due to the actual impact (well, multiple impacts) rather than anything chronic pain related. I haven’t been dealing with this – chronic pain – long enough to be able to predict stuff like flare ups. So we’ll just have to see things go.
And then we were done. The sessions are always exhausting, even if I’m not being asked to do much. So, before I could fall asleep on the sofa (it would not be the first time), I got up and recorded the new vocals for the song I was presenting in class the next day, ‘Last One Standing.’ I really love this song so I was really nervous to hear people’s feedback; I really wanted them to like it.
I finished that and, as predicted, I fell asleep on the sofa for a couple of hours.
I had a gentle rest of the day, doing various admin tasks before starting The One on Netflix. I was craving something new. I got into it really quickly, which was great – exactly what I wanted. I only stopped when 9pm rolled around and it was time for Unforgotten, a show my whole family has loved since it began airing. We all just love Nicola Walker and I particularly love her as Cassie Stuart. Having said that, I’m struggling with this series. I think the case they’re working is super interesting – maybe the most interesting one they’ve tackled – but with Cassie feeling so trapped and angry, it’s not as enjoyable as it has been in the past so I really that hope they’re heading towards a solution that brings some of her warmth back. (It’s safe to say that I wrote this before we saw the series finale.)
I was really stressing before class (we’re heading towards the assessment and I always get so anxious that I’m not doing enough) and somewhat frantically messaging with my friend. She suggested we have a a quick video chat before the class started and that really helped to ground me. Then we signed into our class.
We didn’t have our normal (awesome) tutor but we had another awesome tutor; I’ve had her as a tutor a handful of times since I first started at ICMP, on the BA, and she’s really great. Throw in the fact that we were presenting our ekphrasis songs (songs that were responses to other pieces of art, like visual art, films, etc) and it was a really interesting and thought provoking session. The brief had really stretched people and the songs were all so exciting and so different in the best possible way. I loved all of them.
I was last and VERY nervous because I was (and am) so attached to my song. Fortunately though, everyone really liked it and had some really great responses, some really interesting thoughts, and some good things to think about in the redrafting process. I was so happy with the positive response that I finished the class feeling like I was glowing. My first ‘glowy moment’ of the year – that’s what I used to call the really awesome moments. It’s been a really long time since I’ve felt like I had a reason to use the phrase.
I meant to have a nap between classes – that always makes it easier to concentrate in the second class, which is, after all, three hours long – but I accidentally ended up binge-watching The One. It’s so compelling and so thought-provoking, in so many different ways.
The seminar was on authenticity but having studied authenticity in song lyrics pretty extensively for my Musicology essay, it was all pretty familiar. So while it wasn’t too intellectually taxing, I was tired and it was hard to stay focussed. I didn’t mind three hour classes when I was actually in them but I do find three hour classes on Zoom a struggle.
When the class was over, I curled up on the sofa and finished The One; the last episode was just one mind-blowing revelation after another. It was so good. I found Rebecca a particularly fascinating character; there was so much to unravel. Both Hannah Ware (Rebecca Webb) and Zoë Tapper (Kate Saunders) deliver incredible performances and there’s so much potential for another series. Me and my friend, Luce, (who was an episode behind me) freaked out together when she finished it about an hour later.
I’m always exhausted on a Tuesday, even if I do manage a nap, and I was falling asleep on the sofa around ten. So I dragged myself up and headed for bed. That’s pretty early for me these days. I’ve been trying to get to bed earlier so that wasn’t the worst thing in the world.
I slept really badly but I didn’t sleep in. I was still in pain so I couldn’t get back to sleep anyway and at some point during the pandemic, I started feeling guilty if I slept in (this is super unhealthy, I know – I’m working on it in therapy) so I got up, had a shower and breakfast, and got to work. I did some uni stuff and then wrote down my thoughts to collect myself before a meeting with my course leader.
The meeting was about the final module of the Masters, which is called the Major Repertoire Project where we can research and create a body of work about anything we want. I know what I want to centre my project around (I’ll share soon but I want to get the current module done first) but you can take various approaches to the research and I wanted to talk to my course leader about that. We had a really in depth discussion and she gave me some really good ideas to think about. So I’ve got a lot to figure out but I’m really excited to get into it.
As good as the meeting was, I was really tired afterwards. I got comfortable and tried my best to concentrate on blog post writing. It took hours but eventually I managed to finish my blog post on being diagnosed with ADHD. At least I had a pretty good view while I worked.
Mid afternoon, I was supposed to have a phone call appointment with a neurologist. And I did, except they called two hours late, it wasn’t the person it was supposed to be, and then they basically spent twenty five minutes trying to convince my Mum and I that any tests they do as a department would probably be a waste of time and likely wouldn’t show anything. And that was it. The call ended and I just felt confused and upset. Isn’t the point of a doctor to help you, rather than convince you that trying to find an answer to your problems is a waste of everyone’s time? I mean, I was referred to the neurologist by my GP because she thought this was worth investigating. And then I finally get to see said neurologist after rescheduling and it felt like they were fobbing me off from the moment the call started. So, that was… yeah.
I was all over the place and Mum did her best to distract me. She’d seen bits of The One (although I’d managed to prevent her from seeing anything too spoiler-y) but she wanted to see the whole show so we started it again; she was hooked straight away, just like I was. As we watched, I started doing some basic research based on the Major Rep Project seeds that my course leader had planted in my brain; I didn’t get very far but it was definitely interesting and a good distraction from real life.
And then I went to bed, completely exhausted. It was barely ten thirty.
I struggled up with my early alarm but all of my careful planning for the day had fallen apart before ten am. I’d had two cowrites booked for the day but then one of them needed rearranging so I suddenly had to try and rearrange the whole day. I was majorly stressing that I was going to have to cancel on somebody but fortunately I was able to rework everything so that I could work with both people.
I had a shower and breakfast before finishing the lyrics to a song I’d been working on and speaking to Richard about the plans for the acoustic videos (the ones I’ve been releasing over the last few weeks). Then I worked on blog post stuff until it was time for my first cowrite. My friend, Anna, and I worked on a really cool song that she’d brought a draft of to the sessions and we were both so proud of it when finished. It has some really great metaphors and imagery and we tightened up this awesome outro that she’d proposed. I feel like we created something really special and that felt so good.
When we hung up, I had an hour to eat a really late lunch (and watch some more of The One with my Mum) before my second writing session, this time with my friend, Dan. He didn’t have a draft like Anna but we’d been messaging about what to write about: he’d sent me some themes, I proposed some more concrete ideas, and then he chose one that resonated for us to work on.
We decided to call it quits after a couple of hours and although we hadn’t finished the song we’d started, I feel like we’d made a really solid start on a really interesting song. I really liked what we’d come up with and Dan seemed to feel good about it too.
I feel like my writing has improved so much over the last few months and it felt particularly strong that day. I just felt like everything I was coming out with was good, not necessarily right for the song of the moment but still good. And that felt kind of amazing. Obviously not every day or every session is like that but every now and then it happens and it’s so, so satisfying; it gives you such a motivation boost. And remembering days like that one are really helpful on the days when it feels like everything you write is complete crap. So it was a good day, despite the stressful start, and I felt really positive about my writing and my friendships and my creative relationships and my course. It was a good day.
I was exhausted and starving by the time we finished but in a good way, in the way where you’ve worked really hard and you need to replenish, in the satisfying way. Mum and I finished The One with dinner and she was as blown away as I’d been. It was fun to have someone to talk about it and dissect it with; there are so many interesting and thought-provoking ideas in there.
Even though it was already late, I couldn’t help doing some more research into some of the ideas my course leader had suggested before forcibly reminding myself that that was not the time to be getting into complicated academic research, that I needed to disconnect and go to bed.
For the first time in a really long time, I slept super deeply and actually woke up feeling somewhat human and not a zombie.
After a quick shower and breakfast, my Mum and I headed down to the GP surgery for another set of blood tests. I’ve completely forgotten what they’re for or who requested them with so many people involved right now but apparently they might give us more insight into my fatigue. The nurse was lovely and the whole thing was super quick and efficient.
Back home, I did some work for uni and typed up my notes from my meeting with my course leader, including some of the resources I’d started to find the night before. I wanted to get it all down before I started to forget things. This project feels so huge right now – I’m sure it will start to feel more manageable and achievable once I’m actually working on it and not just thinking about it in broad strokes – so I don’t know what I’m going to need to remember at this point.
I worked up until my therapy session, which are still online at this point. I’ve said it before but I’ll say it again: in person is better and, personally, I find it more helpful but I’m grateful to still have access to therapy at all so I’m not complaining. Since I’ve been in a better place, we talked about that and what’s contributed to that. I told her about my first glowy moment – the first one in so long – and she was so excited so we enthused about that together. But we also talked about how difficult I’ve been finding it to start on the assessment work; maybe it’s my anxiety around assessments, maybe it’s the untreated ADHD, maybe it’s a combination of both. It’s also just irritating to have to focus on the paperwork side of things when I just want to keep writing madly.
It was an okay session. Between all of the pandemic stuff and having sessions online, I find it hard to get into things deeply enough to really move forward. So mostly it’s been about coping, which is necessary but also really frustrating. It’s felt like a year of treading water when I’m just so desperate to make some progress, of any kind.
I spent the afternoon doing various admin, like emails and so on, and more uni work. And then, early evening, I uploaded the first of the acoustic session videos. Working with Sunburst Sessions (back in February 2020), we’d made a video for each track of the Honest EP but I obviously hadn’t finished releasing the EP at that point, hence why they’re only coming out now. I’m going in order of the EP tracklist so the first one up was ‘Bad Night.’
The video up and shared to all of my social media and WhatsApp groups etc, I had a long catch up on FaceTime with one of my parents before having dinner with my Mum. It was pretty late by that point and we were both tired so we watched a couple of episodes of Episodes (it’s one of our comfort shows – it’s not emotionally heavy and both Tamsin Greig and Stephen Mangan are brilliant).
I’m still sore from falling down the stairs so Mum gave me a massage (I’m so freaking lucky to have a massage therapist for a mother) and then we both headed to bed.
I was awake on and off throughout the night and I was wide awake between four and six am. Ugh. And then, of course, I fell into a really deep sleep that was a really struggle to wake up from. And because I’d slept later than usual – later than I usually start taking my current daily painkillers – I was in so much pain that I could barely move. I had to eat and wait for them to kick in before I could manage a shower. So… not the best start to the morning.
When I finally made it to the living room, Mum and I did the Census and then I logged into the blog and posted my International Day of Happiness post.
I spent the rest of the morning working through the feedback I’d received on my songs from this semester, which made the task of choosing songs for the assessment portfolio much more straightforward: I don’t think any of the songs I’ve presented are bad but there were some obvious standouts, all of which were actually in line with my gut instinct about what to submit. I just needed to work on them, based on the feedback, and then pull the paperwork together: the various drafts, the feedback, my notes, etc.
Early afternoon I had a writing session with my friend, Phill, but we ended up deciding that we’d gotten as far as we could online and so we’re gonna continue working on the song when we can meet up in person. We’re just having trouble with the lag time. I’m happy to do that and although that was the writing session effectively over, we stayed on the video call and just had a really fun and chilled out chat, which was really nice. Because socialising has to be so organised now, I’ve definitely found myself having fewer spontaneous and casual chats with people and I’ve missed that. So it was a really nice few hours.
After we hung up, I had some chill time. I was having a quick scroll through Instagram when I saw that Natalie Hemby, a songwriter I really admire, had posted about Travis Meadows, another songwriter I really admire, and how he’s been through A LOT recently…
I love Travis Meadows and his music so I went straight to the gofundme page. The video he’d made the week before, sharing for himself what had happened, was incredibly moving. I donated what I could and shared the fundraiser on all of my socials. (The fundraiser has since met its goal but is still open – I’m sure the hospital bills, past and ongoing, are much more than the original goal set.)
One of my parents came over for a bubble dinner and we watched Lucifer together and then I watched my friend Luce‘s online show. She played some great covers and acoustic versions of the songs she’s already released but she also played some new songs and they were incredible. They were so powerful. I can’t wait for everyone to hear what she’s working on because it’s truly amazing.
When her show finished, I had a couple of FaceTime calls with various family members and then went to bed. It was still really early – not even ten thirty – but I was exhausted.
I didn’t wake up until half nine and when I opened my eyes, I found three of the five cats watching me. Clearly it was long past breakfast time and they were impatiently waiting for me to deliver. So I dragged myself up, fed the clamouring masses (this is sarcasm just in case you couldn’t tell – I adore them), and had a shower, before settling in the living room.
I ate breakfast in front of the Netflix short Creating The Queen’s Gambit. I loved it, loved seeing how the whole thing came together, from the really obvious creative choices (like Beth’s hair and the sets) to the tiniest of details (like the interactions between the characters); it just made me want to watch the show again but I just don’t have the time right now. I would want to pay attention to all of those details and right now I have too much to do; the TV is pretty much just there for background noise at the moment.
I spent the morning working on my notes for my assessment portfolio. I was due to have a cowrite in the afternoon but then that got rescheduled to the next day. But I made use of the time: I spent several hours working on a research proposal for a Musicology conference. I’d absolutely love to present at this conference, so much so that it’s probably making me super perfectionistic about it. So I’m trying – I really am – to dial that back so that I can actually write the damn proposal. Because if I don’t write the proposal, I definitely don’t get to present at the conference.
After a few hours on that, I went back to my portfolio notes. It wasn’t a particularly interesting day but it was busy. I got a lot done.
Then, in the evening, I had another bubble dinner: pizza, Lucifer, and catching up. It was really nice. I couldn’t totally relax – I did a bit more uni work and some writing for various blog posts – but I had a really good evening. And then I went to bed early, completely knackered.
So it was a super busy week. But that’s not exactly new. I’ve been battling all semester with the danger of burning myself out before the assessment. I know that I really need to manage myself better. It’s just that sometimes my enthusiasm gets the better of me, especially when it comes to music things.
As I post this, classes have ended and the assessment deadline is coming up so I really need to concentrate on that. I just wish concentrating was easier. The practical work I don’t seem to have a problem with but the analysis – an essay that’s not really an essay – has me banging my head against my desk. It’s such a simple, straightforward task and yet I’m finding it so difficult. And on that note, I’m going to post this and go and work on it. Because there’s a hundred and one more things to do after I do that.
Category: adhd, animals, anxiety, autism, covid-19 pandemic, emotions, heds, mental health, music, sleep, therapy, university, video, writing Tagged: a week in my life, acoustic sessions, adhd, assessment, attention deficit hyperactivity disorder, blog writing, blogging, blood test, cat, cats, chronic fatigue, chronic pain, conference, coronavirus, covid-19, cowriting, cowriting session, creating the queen's gambit, dbt, dialectical behaviour therapy, ekphrasis, episodes, facetime, family, family of cats, folklore, friend, friends, glowy moment, grammys 2021, heds, honest ep, honest ep (sunburst sessions), hypermobile ehlers danlos syndrome, luce, major repertoire project, march 2021, masters, masters degree, masters degree in songwriting, masters degree year two, masters part time, musicology conference, my cats, natalie hemby, neurologist, nicola walker, occupational therapy, online classes, online concert, online learning, online university, pain, pandemic, pandemic 2020, pandemic anxiety, part time masters student, perfectionism, perfectionist, remote therapy, remote writing session, research conference, research proposal, seminar, singersongwriter, sleep, songwriter, songwriting, sunburst sessions, taylor swift, the highwomen, the one, the one netflix, the queen's gambit, therapy, travis meadows, unforgotten, university, university assessment, week in my life, writing session
Posted on April 2, 2021
Autism Awareness Day always has a theme. Officially, the UN sets the theme but different organisations also choose their own themes; for example, I know that autistica has chosen the theme of anxiety. The official theme (the one set by the UN) is ‘Inclusion in the Workplace: Challenges and Opportunities in a Post-Pandemic World.’ I don’t feel that there’s really anything useful I can add to that conversation, given that I’ve never been well enough to have what society would consider a proper job and that the career path I’m following doesn’t really involve traditional workplaces. So, instead, I thought I’d write about something different, something that has been a really big deal for me this year.
For so long, I just felt like I was broken. And I felt like I was broken in so many places. I couldn’t understand it. Getting the Autism Spectrum Disorder diagnosis helped but there were still all these cracks, all of these problems that no one could make sense of. I had mental health problems, I had chronic fatigue, I had chronic pain, and so on. Nobody could figure out the whole picture and at worst, I was just abandoned by medical professionals, told that my case was just too complicated. That was the most painful part, I think; these people, many of whom it was their job to help with situations like this, were willing to let me continue to struggle rather than put in the effort and help me. It made me feel like I wasn’t worth helping, the toxic best friend of feeling like I was broken.
But in the last few months, with the help of several new medical professionals and some more diagnostic work, the pieces have all slotted into place and, I think, we might finally have the whole picture. So this is the timeline, beginning in 2016 (I might add dates later but I don’t have them all to hand right now).
(I’ve covered some of this before but I think it’s necessary if we’re talking about said whole picture.)
And suddenly all of the pieces started to click together:
THE MENTAL HEALTH ISSUES (TRD, GAD, OCD, AND BPD) AND ADHD ARE, AT LEAST IN PART, CONNECTED TO MY ASD.
MY ASD AND HYPERMOBILITY ARE LINKED.
THE HYPERMOBILITY LED TO A DIAGNOSIS OF hEDS, WHICH EXPLAINS MY CHRONIC FATIGUE, CHRONIC PAIN, AND OTHER PHYSICAL SYMPTOMS.
Discovering that it’s all connected has been a really helpful and comforting revelation. I’m starting to see each condition as a star in one big constellation and that’s a hell of a lot better than feeling inexplicably broken in multiple places. I still have to deal with everything that comes with each of these conditions, of course, but knowing that they’re all part of the same picture does make my health less draining to think about and manage. It all makes more sense. And I am a person that needs things to make sense. So this is all a really big deal.
Category: about me, adhd, anxiety, autism, bpd, chronic fatigue syndrome, depression, diagnosis, heds, mental health, ocd Tagged: actuallyautistic, adhd, anxiety, asd, attention deficit hyperactivity disorder, autism, autism awareness, autism awareness day, autism awareness week, autism spectrum disorder, autistic, autistic adult, borderline personality disorder, bpd, chronic fatigue, chronic fatigue syndrome, chronic pain, depression, diagnosis, diagnostic process, ehlers danlos syndrome, generalised anxiety disorder, heds, hypermobile ehlers danlos syndrome, hypermobility, multiple diagnoses, myalgic encephalomyelitis, obsessive compulsive disorder, ocd, social anxiety, treatment resistant depression
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, as well as several mental health issues. I’m a singersongwriter (and currently studying for a Masters in songwriting) so I’ll probably write a bit about that too.
My first single, ‘Invisible,’ is now available on iTunes and Spotify, with all proceeds going to Young Minds.
I’m currently releasing my first EP, Honest, track by track and all five songs are now available on all major music platforms. However, there’s still more content to come…