Posted on March 31, 2021
Since this is my blog, the experiences are predominately from my point of view but I thought it would be really useful, as well as interesting, to get a different perspective on the same scenario. So, with that in mind plus the fact that most resources are aimed at the parents of young autistic children, I asked my Mum if I could interview her about what it’s like to be the parent and often advocate for a young adult with Autism Spectrum Disorder. I came up with a list of questions and she answered them. I had almost no input on her answers, only to ask for more information or detail if I thought she hadn’t fully answered the question or finished a thought. We’re hopeful that this could be of some help to parents with adult children managing a form of Autism.
I’ve talked about what it was like for me to get a late diagnosis but what was that experience like for you?
The process of getting a diagnosis for you was frustrating at best and distressing at worst. You were very clear about your need to know the causes of your difficulties and so refusal from medical professionals to engage with that need was hard to witness. I needed to do the research, follow up possible assessments and/or therapies and talk about your challenges against a backdrop of suspicion of being overprotective and a distrust of my motives. Even when it became clear that your inability to talk for yourself at the outset was a result of Selective Mutism and your experience with those professionals, I was still met with a resistance to engage with me on your behalf.
Although I’m more able to speak for myself now, what has it been like having to do so much advocating for me?
It always felt like it was my role to do this until you were able to do it for yourself. I wasn’t trying to fix things, just get your voice heard, your experience understood so that the problems you were facing could be addressed and the right support provided.
I knew all the answers to questions you were being asked because we’d talked about it all beforehand. Both before and after your diagnosis, it has just felt like I can be the means to you being heard and hopefully understood as and when you are not able to do it yourself.
As in your first question, this doesn’t always work! And I do often feel frustrated by a refusal to accept my intentions, confusing it with a reluctance to ‘allow’ you to speak for yourself/become independent.
Knowing me but having an outside perspective, what would you consider to be the positives and negatives of having Autism Spectrum Disorder?
This is really difficult for me as all I see is YOU, with all your qualities and all your challenges. Combine this with the fact that each person with ASD presents so differently and I do find it difficult to generalise. Understanding more about women on the spectrum now, I see your very singular focus on anything you set out to do as a positive. I think your intense empathy is a double bind, giving you a compassion that can then often be overwhelming. The biggest negative I see is your level of anxiety. This is often debilitating and always massively exhausting and affects most aspects of your life.
How do you think things would’ve been different if my ASD had been recognised when I was younger?
This is a little easier to answer as I think, from all I see now, knowing about it earlier may have enabled us to access support for you and given you access to specialist resources. Having said that, I wonder if a diagnosis earlier might have ended up giving you a label that meant expectations, both your own and society’s, may have been different for you. Increased awareness of and understanding surrounding neurodiversity is relatively recent.
What do you think is the most important skill or trait when it comes to parenting a young adult with ASD?
This question makes me want to ask you what you feel has been most important but my sense is that being there for you, trying to put aside any preconceptions and opinions of my own so that I am able to really listen and hear what you are telling me, leave aside any of my own anxieties or fears, to support and encourage you to do what you want to do; a combination of protection when things are tough and support to push forward when you feel able.
I also feel it has been important to be prepared to read and research for myself and learn all about the condition so I can share this whenever it feels necessary to inform the argument for support. And to be prepared to persist when first attempts are met with a negative response.
I’ve often talked about feeling like a burden for not moving out or contributing more as a young adult. What are your thoughts on this?
In answering this, I would like to reference a quote here, which I think explains how I feel about this. I found this during one of my searches and thought it was a positive recognition of the difference I see and how it affects your life in the sense of the ‘what’ and ‘how’ you contribute and participate. Keri Opai, a Mental Health Service Award Winner in New Zealand, consulted the Maori disabled community in order to develop variants in language that differ from what he called the “sometimes condescending English terms,” and instead emphasised the ‘gaining [of] strength and ability.’ So the word for ‘disabled’ itself is ‘whaikaha,’ which means to “have strength or to be differently able.” He also spoke of people with autism having ‘their own timing, spacing, pacing and life-rhythm’ and so interpreted autism as ‘takiwatanga,’ meaning ‘in his or her own time and space.’ (Te Reo Hapai, the Language of Enrichment by Keri Opai)
I do understand that you feel this way though but I know that you do what you can when you can, and that this inevitably fluctuates according to what you have going on at any particular time. With the anxiety and fatigue you experience on a daily basis, and your focus being studying at the moment, it just doesn’t make sense that you do more than you are able to, nor that you would move out to live independently, with all the extra demands that would make on you, yet. There is plenty of time ahead for that. Until then, I get to enjoy your company and give you the support you need.
I’ve been taking various medications and going to different forms of therapy for years now. What do you think have been the effects of those, positive and negative?
I have always felt that it would be a combination of therapy and medication that would be likely to be the best way forward, and I think we both agree now that this has been the case. It was challenging to find a therapist that you felt able to work with but once we did, we knew instantly that you could start moving forward, in your own time and in whatever way felt possible, something your therapist has always supported.
Regarding medications, I do have concerns about their effects on you physically as well as mentally and appreciate that living together does mean I can help monitor these effects and see patterns and changes that maybe you can’t.
What do you think the hardest part of living with ASD is?
Again, looking at you, I would say that the hardest part for you, of living with ASD, is the sense of feeling different and feeling left behind your peers; and watching you being so exhausted by managing the mental health issues that have troubled you as a result of the late diagnosis.
Do you feel your life is different because I’m autistic?
Yes, my life is different to what I had expected it would be at this point, but then so is yours. But we deal with that, and make it the best we can, for both of us.
What has been or is the hardest part of parenting a young adult with ASD?
I have often felt very isolated, and criticised for continuing to be your voice when you are not able to speak. And I do worry about the barriers you may face in a world that does not always recognise the assets and abilities of neurodiverse people, expecting autistic people to change rather than have society change the many inhospitable or incompatible environments and expectations that may hinder them.
What help/advice would have been helpful to you at any point?
All the way through… someone willing to believe in my intentions and acknowledge that, I, as a parent, only have your best interests at the core of everything I do.
So hopefully her responses to these questions have been helpful or reassuring to the parents among you guys. During this process, she actually realised that she had questions for me so we decided to do the same thing in reverse and that post will be up tomorrow!
Category: about me, anxiety, autism, diagnosis, medication, mental health, quotes, response, therapy, treatment Tagged: advocate, anxiety, asd, autism, autism awareness, autism diagnosis, autism in girls, autism in women, autism resources, autism spectrum, autism spectrum disorder, autistic, autistic adult, diagnosis, disability, disabled, empathy, fatigue, focus, independence, interview, invisible disability, keri opai, late diagnosis, maori, medication, mental health, mental illness, mother, mum, negatives of autism, neurodiverse, neurodiversity, parenting, parenting autism, positives of autism, selective mutism, therapy, treatment, university
Posted on December 24, 2020
As per tradition, here I am posting a list of things I’m grateful for on Christmas Eve. This year has obviously been very different to previous years and I think it’s fair to say that we’ve all had days where we’ve felt scared and angry and probably every negative emotion under the sun, making it difficult to feel grateful, but then it’s also reminded us of how many things we do have to be grateful for. There are many more things that could go on this list, but I’ll try to keep it as concise as I can. Otherwise, we’ll probably be here until next Christmas.
Family – I could not be more grateful for my family. I love them so much. So, so much. They do so much for me and all I want to do is make them proud. But this year, I’m especially grateful for their health and grateful to them for their care and caution during this time, for how sensible everybody has been despite how much we all want to be together. It’s been so hard not seeing so many of my extended (and even close) family members face to face for such a long time and I’m truly and deeply looking forward to seeing them all (and hugging the crap out of them) when it’s safe enough to do so.
Mum – Oh my god, my Mum. I love her so much. She is just incredible. This hellscape of a year has been so hard for me (as it has been for so many but in my case, it hammers right on my biggest autistic difficulties: uncertainty and anxiety) but she’d been completely solid throughout, always there for me when I needed her. She’s made this so much easier on me than it could’ve been and I’m so grateful for that. She’s handled everything with such grace; I’m truly in awe. I only hope that one day I will be as strong and capable as her. I’m probably going to have some separation issues whenever the world starts to function in a way that we’re more used to (I mean, we’ve been together almost 24/7 since March when I was usually in London a couple of days a week and she was in and out all day, out for full days, or even away for several days, etc so I’m very used to having her around and she’s become a bit of a touchstone when it comes to my anxiety) but I’m not going to think about that yet. It seems there’ll be plenty of time before that’s going to happen.
Friends – I am so grateful for my friends; I always am but I’m especially grateful this year. I have moments of being terrible at staying in contact and periods of being better (something that’s largely dependent on my mental health) but considering everything this year, I don’t think I’ve done too badly. I’ve been talking to and spending time with different friends in different ways: calling, messaging, video-chatting, watching movies together, a few socially distanced meet ups, etc. I’m really happy we’ve been able to stay in touch even if I do desperately miss spending time with them. They’ve been a real tether to ‘normal’ life and I’m more grateful for that than I can say. This year has also taught me (both as a result of the pandemic and not) what I need in my friendships (not that that’s all that matters but if neither of you are getting what you need most of the time, how are you supposed to make a friendship work?) and I really value that. It doesn’t automatically change anything but I think that knowing what is good for me in a friendship and what isn’t is really important and will only be helpful in the long run.
(There are a handful of people I wish I could include in this collage but don’t have pictures with, from this year anyway.)
Richard – I mean, where do I start? Generally, I’m of the opinion that the universe is completely random but something awesome happened that day six and a half years ago when I sat down next to him on our first day at university. I had no idea that I was meeting one of my best friends, most trusted collaborator, and creative partner. The Honest EP never would’ve happened without him. We worked on every aspect together and I can’t wait for whatever our next project turns out to be. This year has obviously been about as different as we could’ve ever imagined but he’s gone through every high and low with me and I couldn’t be more grateful. I’m so glad that we’ve been able to continue releasing the Honest EP and that we’ve been able to write together despite the pandemic, even if writing remotely isn’t as fun as writing face to face. I’ve missed just hanging out with him, with our friends, and actually doing things that don’t require a screen but I’m so grateful for what we’ve had and what we’ve been able to do despite the difficult circumstances. I don’t feel like I’m saying all of this as eloquently as I’d like to but what I’m trying to say is that I’m beyond grateful for Richard. I don’t know how I got so lucky with such an amazing friend.
All of the years I had with Lucky – January feels a bit like a lifetime ago; I can’t believe it’s only been eleven months since we said goodbye to our precious Lucky. It was one of the most painful experiences of my life but he was ready. I know people say that but you only had to look at him to know that it was the truth. But despite the pain and sadness of that twenty four hours (and obviously since), we had an amazing almost sixteen years with him. From meeting him when he was a few days old, to bringing him home, to teaching him to sit, to the hours we spent playing with him, to sneaking him onto the sofa with me when no one was home, to various people ‘sneaking’ him onto the sofa whenever everyone was in the room, to running around on the beach together, to watch him throw himself into hydrotherapy with such enthusiasm, to lying on the rug in front of the fire together… every second with him was a wonderful gift that I will forever be grateful for.
And while I will always wish to have had more time with him, I’m glad that he didn’t have to manage the pandemic and all the stress surrounding it. He was such a sensitive dog, especially in his old age, and I think it would’ve been really distressing for him. Saying goodbye to him was devastating enough as it was; I know that having him put down during lockdown would’ve been so much worse, especially as it’s likely that we wouldn’t have all been able to be there with him.
My cats – The family of cats have been a bit of a lifesaver to be honest. Early on in the pandemic, their complete obliviousness to the chaos in the world was very calming: they just continued with their lives and there was something very soothing about that. And just throughout the pandemic, the cuteness and silliness and playfulness have been a wonderful distraction or comfort on the more difficult days. On the whole, they’ve all become very snuggly with only me and my Mum around (they absolutely freaked out when they saw a new person for the first time in months) and now, nine months into the pandemic, I rarely go a day without having had at least two cats draped over me at some point. It’s all very cute and very much appreciated. I’m also really, really grateful for their health. I’m always aware of that but with Lucy having a health scare that resulted in two surgeries earlier in the year, I feel particularly grateful that all five of them are well and healthy.
FaceTime, Zoom, Netflix Party, etc – I’m so grateful for the platforms that existed and have come to exist to help us connect with our friends and family (and continue with university) during this time. Yes, I’m sick of only seeing people via screens and I’m even more sick of my eyes always ending up on my own face and, as an autistic person, communicating feels ten times harder but I’m still so glad that we have them so that we can see and talk to and spend time with our friends and family. It’s not enough but it’s better than nothing and I’ll gratefully accept whatever way of connecting I can get.
TV and Film Streaming Services, eg. Netflix, Amazon Prime, etc – Having access to so much media to consume was a great way to escape everything at the beginning of the pandemic and throughout the first UK lockdown. I discovered some really awesome TV shows and movies (about which I’m going to post later this week). It was escapism, but it also kept my brain creative (filling it with stories and characters and ideas) even if I wasn’t able to express it for a long time. And now that I’m writing again, I have so many ideas and stories to tell.
Fanfiction – I mentioned Fanfiction in my Lockdown Favourites post and it’s definitely been one of the things that has helped me throughout the pandemic and lockdowns, especially early on when I was just paralyzed with anxiety. I’ve really struggled with reading during the pandemic; I just haven’t been able to concentrate enough to get into a novel, like there isn’t enough space in my brain for new characters, new worlds, and new storylines. But reading stories set in familiar worlds with characters that I love (Stargate SG-1, Sanctuary, Harry Potter, etc) feels much easier and really comforting, especially when my mental health is shaky. I’ve always found it to be a good form of relaxation and escapism; maybe one day I’ll post my absolute favourites because they’re just so good, so well written and quite possibly better than the originals. I do want to give a particular shout out to Annerb who has been my staple writer this year; I discovered her through her Stargate SG-1 stories and then fell in love with her Harry Potter epic, The Changeling, where Ginny is sorted into Slytherin. I’ve reread that particular story so many times. It’s absolutely incredible: she’s filled out the world of Harry Potter so beautifully, creating real depth to the different houses and characters, both canon and original. I mean, I could talk about it forever. It’s so freaking good.
My piano – My piano and I have been good friends this year, especially since the pandemic began. Between the nerve pain in my left hand that’s made guitar playing all but impossible and the soothing lower octaves of the piano, I spent more time at my piano this year than I probably ever have before. Between the calming sound and the concentration blocking out my anxiety, it’s been one of my favourite things to do. I’ve played so many songs and written quite a few too and it’s another of the things that have kept me going through the pandemic.
The music that got me through this year – I mentioned several songs in my 2020 in Songs post but those were my absolute favourite songs of the year. There were so many more songs and so many more albums that inspired me and encouraged me and helped me to cope with all of my emotions this year and I’m so grateful to every artist that gave me that gift. I’m going to write about a couple specifically but I also want to mention Sara Bareilles (both for seeing her in Waitress several times and for her new music), Halsey, Kelsea Ballerini, and Maren Morris for their various contributions throughout the year that made things just a little easier. I hope I’m not forgetting anyone but if I discover that I have, I’ll come back and add them.
Kalie Shorr – I am so grateful that I walked into that Tin Pan South/Song Suffragettes show in 2016 and saw Kalie play. There were so many shows I could’ve gone to and yet, somehow I ended up at that one and it has had such a big impact on my life. I mean, I wouldn’t have gotten to play at a Song Suffragettes show if I hadn’t gone to that show. But my point here is that I heard Kalie’s music for the first time that night and since then, she’s released the Slingshot EP, the Awake EP, her debut album, Open Book, and Open Book: Unabridged, a reissue of the album with four additional songs. Her artistry and songwriting got better with every project but each one still holds a special place in my heart. I love her music and I learn so much from her as a songwriter. She is one of my biggest musical inspirations and I hope that, at some point, I will develop as distinctive a voice as a songwriter and artist as Kalie has. So I guess that’s why I’m grateful for her in general but I’m also especially grateful for all she’s been doing this year. Throughout the pandemic, she’s done so many livestreams on various platforms, which has been really awesome. We’ve gotten interesting and funny stories, acoustic songs, previously unheard songs… it’s been great. And while I’m obviously still enjoying them, they were particularly important to me during the early days of the pandemic when my mental health was really bad; they really helped me keep going. She’s also been part of various other musical projects, puts out a podcast, is consistently hilarious on Twitter, and released the previously mentioned Open Book: Unabridged. I’d hoped to see her this year on my trip to Nashville but then said trip was cancelled by the pandemic. I’ve met her a handful of times and she’s so lovely. I wish I lived in Nashville; then at least there’d be a chance of us being friends and writing together. I’d love that. I admit that my insecurities do sometimes get the better of me and I struggle with, I guess, comparison anxiety (how well she’s doing vs. how I’m doing) just because I want to have a career in music so badly and have so many fears over why it won’t happen, but I’m still endlessly grateful for her and everything she does. Her music has changed my life for the better in so many ways and I appreciate that more than I can say.
Taylor Swift – Despite remaining largely out of sight during the pandemic, Taylor had a massive year and by extension of that, a massive impact on my year. Her documentary, Miss Americana, came out in January, of course, which was incredible; it felt like a great honour to be let into her life like that, especially during the moments that were really difficult and personal. She also released the City of Lover Concert on Disney+, which was really cool (although it was sad that her pre-Lover songs couldn’t be included); I’d so desperately wanted to go (especially since it was so close, considering that Taylor’s a US artist) but it was just too big a risk with my health and my finances as they were. So I’m really grateful that I got to see it in some form. Even though we got folklore and evermore out of the lockdown, I still want to mention the cancellation of Lover Fest. Even though it wasn’t unexpected, I was absolutely gutted; that and my Nashville trip were the top two most painful cancellations of the pandemic. I was so looking forward to it – the times I’ve seen Taylor live have been some of the bright spots over the last five or so really difficult years – and to have that ripped away was really hard (in a parallel year that I’ve daydreamed up, it still happened and it was glorious). But then we got folklore, folklore: the long pond studio sessions on Disney+, AND evermore, all in the space of about six months. I don’t know about anyone else but my head is still spinning. folklore and evermore are both incredible albums (I’m currently writing blog posts about them because I love them so much) with so many amazing songs that I’ve completely fallen in love with. They’ve also been hugely inspiring for me as a songwriter, which the long pond studio sessions only added to when Taylor talked about the songs from folklore and the processes behind the writing of them. She has just been a very inspirational figure for me this year (she always is but, again, this year has been a real example of that): as a songwriter and general creative person, handling the ongoing situation around her Masters with so much grace, speaking out during the US election and giving the Democrats her song, ‘Only The Young,’ to use in their campaign, being a really good example around safety during the pandemic… I’m so grateful for all she does, for how inspiring she is, for how much she CARES. I’m grateful to have her to look up to. I’m still hoping that I’ll get the opportunity to tell her that one day.
Agents of Shield – I was gutted to hear that this year’s season was going to be the last but damn, do they know how to go out with a bang. I wasn’t convinced about the time travelling element at first but I ended up really getting into it and I loved how, even though they stopped the Chronicoms each time, time still changed and they ended up in a drastically different present. Every episode was really, really good and a few of them were standouts of the entire show (7×09 – I’m just saying…). I loved the stories, I loved the development of the characters, and I loved the ending. It was perfect. I was sobbing throughout the last few episodes because it was so powerful and emotional. Daisy Johnson is my hero. I will love her forever. I will love this show forever. I’m so grateful to have discovered it, to have had it in my life, and to move forward with everything the show gave me. There may be no new episodes but that doesn’t mean it’s over; the impact it had on so many people will never be over.
The new swimming pool we found – Late in the summer, we found a swimming pool that was really strict about their safety guidelines and having not felt safe at my previous pool, I was so appreciative of that and so excited to get to swim again. It wasn’t as often as I would’ve liked but anything was better than nothing after months of not having access to a pool or not feeling like it was safe to be at a pool. It just felt so great to get proper exercise and really use my muscles again after not being able to since before the pandemic. I love this pool, especially when they turn the main lights off and the room is just lit by the underwater lights; it’s so soothing and just a really good atmosphere to exercise in. I always feel so good afterwards.
The benefits I receive – I am so unbelievably grateful for the benefits I get, more grateful than I can truly express. As a disabled person who struggles physically and mentally, I’m constantly worrying about money because my health is so unreliable and therefore steady work or a steady work flow can be really difficult or even, at times, impossible. So the financial support has been amazing and so important for my mental health, especially during this year of constant uncertainty.
The (medical) progress I’ve made despite the pandemic – Despite everything moving slowly due the pandemic (my rheumatology referral, for example, took about nine months), we’ve learned a lot about my body and my brain this year and we’re in the process of exploring the options, the avenues we have to choose from. I made medication changes, we chased more options for helping my CFS, was tested for a Vitamin D deficiency and given a high dose supplement to bring my levels up again, I was diagnosed with hypermobility, I finally had the rheumatology appointment and have been referred on to a handful of different departments. I’ve had a MRI, I’m due to have an ECG, and will hopefully start hydrotherapy as soon as it’s available, although I’ve already started doing the basic exercises I was given. And we’ll see what the other departments say. Oh, and I have another mental health evaluation coming up soon, which may give me some more information so, despite everything, we have made progress and progress that is hopefully leading to more progress. As hard as it can be day-to-day, I’m really pleased about that.
The result of the US Election – I mean, this one is pretty obvious. I was so terrified that Trump was going to get in and it was so scary to have no say or way to help. The days of waiting for the final result were agonizing and when I found out that Biden had won, I actually cried. No, he’s not perfect but he’s far, far better than Trump and I’m so grateful, in this regard at least, to finally have some hope rather than fear and horror and frustration.
My tutors – Of the two semesters I had this year, all of my tutors have been so, so good. And not just in the ‘being good teachers’ sense (you’d hope that was a given at Masters level) but they’ve all been so fantastic about working WITH me to make sure the classes and workload and assessments were as manageable as possible for me with my difficulties. They’ve been so open and supportive and they’ve made the semesters so much much easier; I mean, the work was still hard (but then it’s a Masters Degree so the work is supposed to be hard) but there wasn’t that unnecessary stress that there has been before. I’m still anxious about my grades but that’s practically a personality trait. Anyway, they’ve been absolutely wonderful and I so appreciate it.
The experience of the Honest EP – The first track of the EP, ‘Bad Night,’ came out in 2019 but the other four came out this year, including accompanying music videos and additional content like remixes and behind the scenes for the songs and videos. Making and releasing and promoting all of that was often really stressful but so much of it was really fun too. The beginning of the year was really fun: releasing ‘Clarity‘ and see it do better than ‘Bad Night,’ doing several really fun gigs with really lovely people (there was a really awesome moment where everyone was waving their phones with the flashlights on and another where everyone got really into the song, dancing and even singing along despite it being the song’s first outing), playing my university’s songwriters’ circle, a weird and wonderful studio day… and then the pandemic hit. My mental health took a real dive but things kept moving. I released a remix of ‘Clarity’ with an accompanying music video, which was definitely a new experience. Then I released ‘Sounds Like Hope‘ along with the gorgeous music video animated by Lois de Silva. I saw myself on TV when the music video for my debut single, ‘Invisible,’ was played as part of Brighton’s virtual Disability Pride Festival. Richard and I managed to film and edit the music video for ‘Back To Life‘ (during a period when it was safe to do so – we were very careful about that) in time for the planned release of the song. Even though shooting that video was super stressful, I was still able to have fun: it’s such an upbeat song that it was really fun to prance around to and even though the sea was freezing and the pebbles were painful to stand on, messing around in the shallows was actually kind of joyful. So the song and video came out and then, at the end of October, the fifth and final track, ‘Honest,’ came out, which was really exciting. It did really well and Richard and I celebrated the day with a dance party and a shot (I can’t speak for Richard but I’m a lightweight). It was a really fun day. We put together a music video for it, using clips from this whole bizarre journey; it felt very fitting for a song called ‘Honest.’ And as of this moment, the EP has surpassed 35,000 streams on Spotify, which I’m both really proud of and really grateful for, grateful to everyone who took the time to listen to these little songs that I wrote. There have been so many beautiful moments during this journey and it’s not even over yet; there’s still more to do and more to come. It’s been incredibly stressful but I’ve never felt so strongly that I’m in the right place as when I’ve been working on this project and performing these songs. I’m so grateful to and for all of the wonderful people who’ve worked on this project with and supported me through it, especially Richard and Mum. I couldn’t’ve done this without them. I’ve learned so much and gained more than I could’ve imagined (not financially unfortunately but in so many other ways). This project has changed my life and I’m beyond grateful.
The ‘little’ things – There were just a handful of things that I wanted to mention that there wasn’t really enough to say about for each of them to have their own bullet point but I didn’t want to leave out: my neighbour rescuing my cat when she got stuck up a tree even though he later told us he was afraid of heights; my brother doing a gorgeous job on creating a brand new leg for one of the china horses I got from my Dad (we think it got broken when we moved house); my therapist; the new cat tree and how adorable it is when all of the cats curl up on it at once; Tin Pan South still going ahead, if virtually rather than physically; the concerts I got to go to pre-pandemic; being able to dye my hair at home… I’m sure there are more but these are the ones that are coming to mind as I write this. Again, if I remember any others, I’ll come back and add them to the list.
So there you have it. This ended up a whole lot longer than I meant it to be but I think I am just really grateful. This year has been horrible in so many ways but it’s just made it really clear to me how good the good things are. And, as always, there have been some unexpected surprises along the way, things I never could’ve seen coming. I’m sure there are more things I could add but I’m gonna stop and go and do my Christmas wrapping. I hope you all have the best Christmas possible under these weird, hard circumstances. I hope you feel the things you need to feel and do things that make you feel good. Life is hard right now and no one should have to pretend otherwise. So I hope you’re looking after yourselves and I’m sending you big, virtual hugs.
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Posted on September 26, 2020
Not long ago, I volunteered for a research study into ME/CFS (Myalgic Encephalomyelitis/Chronic Fatigue Syndrome) and part of it involved keeping a photo diary as a visual representation for how my life is affected by my CFS. Obviously my life before the pandemic and my life now are quite different and so the researcher asked me to include pre-pandemic photos as well, to ensure that both experiences were recorded for the study. The collection of photos (and descriptions) I sent her was very long but I thought I’d do an abridged version to post here because it was a really interesting exercise.
(It’s worth noting that this was put together before I started back at university, hence why there aren’t any current references to classes or assignments.)
1. During my BA, I frequently took naps in quiet corners of my university between classes and then at my best friend’s flat when he moved onto the same street as the university. I found the commuting exhausting and the classes were long (some of them three hours) and took a lot of concentration. By the end of the semester, I was often really struggling to wake up to go back for the next class. A few times, I slept straight through both my alarm and my class. Fortunately that only happened a couple of times!
2. I’m currently doing a Masters Degree in songwriting part time and pre-lockdown, I’d go up to London usually once or twice a week for lectures, workshops, and cowriting sessions. This is an example of one of the assignments we had during the first module, which was called Creative Process.
3. Because living alone would be too much for me – I wouldn’t have the energy to look after myself, let alone do anything more – I commute to university (pre-pandemic anyway), involving lots of underground travel and multiple train journeys a week, something that I find exhausting. This is one of the reasons I chose to do my Masters part time because it reduced the amount of travelling and therefore allowed me to spend more energy on the course/work rather than on travelling.
4. At the end of any day that involves hard work or anxiety, I’m utterly exhausted and usually end up horizontal on the sofa or going to bed as soon as I get home from wherever I am. In this instance, I’d just done the assessment presentation for the first module of my Masters – which I’d been incredibly anxious about – and was completely exhausted. Plus the day had involved practicing it in the morning as well as travelling to London and back. I was so tired that I could barely stay awake long enough to eat dinner before going to bed.
5. I spent most of my days out of uni on the sofa, working on music, my mental health blog, or catching up with my diary, a favourite movie or TV show on in the background because I work better with background noise. I’m usually joined by a cat or two.
6. As a singersongwriter, I try to perform as often as I can, both in terms of opportunity and having the energy (I once played three gigs in three days after which I could barely function for over a week because I’d just used up so much physical, mental, and emotional energy). That’s not a common problem – managing my energy around the amount of gigs – as there aren’t a huge number of opportunities with so many aspiring singers in the two cities I perform in, London and Brighton. I love performing. It’s the place I most feel myself, especially if I’m singing songs that I’ve written. I don’t feel any fatigue while I’m performing – I’m feeling so much joy that it’s like I’m flying – and I don’t feel any fatigue until the adrenaline wears off, anywhere between thirty minutes and several hours later.
7. Since getting an Autism Spectrum Disorder diagnosis, I’ve been able to get access to disabled seats at concerts, which does (in certain ways) improve my concert experience. It can be more stressful and it can make no difference at all but at the very least, it makes me feel better. I am in the disabled section and therefore no one can judge me or think that I don’t deserve to be at the show because I’m not dancing around, not ‘enjoying myself enough.’ That makes me feel more able to sit as I need to, which does make the concert experience easier on me and my body. Having said that, I’m not always so sensible out of sheer enthusiasm.
8. Before the pandemic, my best friend, Richard, and I had almost weekly writing and production sessions. My current EP was made almost entirely by the two of us in various rooms in the various places we’ve lived in over the last few years. These sessions are so fun and invigorating and even when it’s a struggle to find the right words or get the production to sound exactly how I want it to sound, it always feels right. I often feel very drained afterwards because it involves a lot of concentration and communication and we often work for four hours or more at a time. We have had sessions that last all day where I’m barely coherent by the end.
1. We have five cats in the house and I’ve been spending a lot of time with them. They’ve always been really good for my anxiety – probably because they are so mindful and live so fully in the moment – but they’ve been an extra comfort during these stressful times. I always try to get a good cuddle in the evenings since I get particularly anxious before bed because I’ve been sleeping so badly and having lots of nightmares during lockdown.
2. I generally drink at least two Red Bulls a day to keep myself awake and somewhat alert, although I don’t think they work as well as they used to. I’m sleepy all the time, but whether that’s from the CFS or the side effects of my anti-depressants or both, I don’t know. I hate feeling like I need to drink it and I worry about the effects on my health but it’s currently the only way I can stay awake for at least most of the day. My Mum and I are investigating other options, or we were until the pandemic brought everything to halt. We haven’t given up though.
3. This is my usual day-to-day view at the moment. I have a desk designed for bed or sofa use so that I can work from the sofa, which is more comfortable for me than working at my desk since I’ve been have problems with pain during lockdown (I’ve been referred to various hospital departments but I’m still waiting for the appointments). I’m usually working on my laptop – on my mental health blog, on my diary, on music stuff, etc – and there’s usually a cat draped over me.
4. I usually have the TV on in the background because I seem to be more productive with familiar background noise, like a familiar TV show or movie. But I’ve also been watching new things during lockdown, both to escape from all of the stress around the pandemic but also as inspiration for my music as not much is happening in my personal life to draw from for songs. This is the very last episode of Agents of Shield, my favourite TV show and I was hugely sad to see it end although the ending was as perfect as the end of something you love can be.
5. Since face-to-face writing sessions aren’t safe at this current time, I’ve been doing all of my writing sessions via Zoom. I’m currently doing about two a week, mostly with my writing partner, Richard. We alternate sessions: one on my songs and then one on his songs and so on. It’s harder work and not quite as fun or productive as a normal pre-pandemic session (who would’ve thought that not being able to point at something would trip up the creative process?) but it allows us to keep creating, which I’m grateful for. I’m always careful not to plan anything too difficult afterwards because these sessions are really draining and after about four hours, my ability to concentrate starts to fade.
6. I’ve been playing a lot of piano during lockdown. It distracts me from all that’s going on, I want to improve my skills, and I just genuinely love playing, especially in the lower octaves. I find them very soothing. I can play for hours without noticing the passing time; it’s lovely. Playing and singing for hours is, of course, tiring but it’s worth it because I get so much enjoyment out of it.
7. Because of my fatigue, I spend a lot of time on the sofa, which can get boring and frustrating, but it’s not so bad when I have my Mum (she’s self-employed, primarily working from home – especially now) and the cats around.
8. Most days consist of sitting on the sofa, working on my laptop. I’m writing a lot of posts for my mental health blog at the moment, preparing for when university starts again and I have less time to write. My Mum often does emails similarly, keeping me company even if we aren’t actively engaging with each other.
So that’s my condensed photo diary for the study. There are, of course, other areas of my life and other areas of my life that my CFS affects, like food and exercise but I don’t have any photos relating to those. For example, swimming is my main form of exercise but pre-pandemic I wouldn’t take my phone further than the locker room and since lockdown began, I’ve been struggling to find a way to swim that feels safe. I may have found one but I’m trying not to get too excited: I’ve missed it so much and I’m so desperate to get back to it, for my physical health, my mental health, and my relationship with my body. I was also reluctant to include other people; my exception was Richard because our work and social media presence are so intertwined. So there are obviously gaps but I tried my best to give an overview. Hopefully it will be a useful contribution to the research.
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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…