Posted on August 10, 2019
Autism is not always the easiest thing to understand. That’s okay. I’m autistic and I don’t always understand it. And that’s why words are wonderful: because they can help us make sense of things we don’t understand. The right words can show you a whole new side of something. That’s why I write this blog.
But for now, I thought I’d have a look at some of the most common analogies for Autism:
Possibly the most common analogy is the comparison of computer operating systems. Being autistic is being a Mac in a world of PCs. Ultimately they do the same thing but there are real differences that put them apart. Not all of the software is compatible, which causes problems when interfacing; you have to learn both to communicate smoothly. Functions require different commands on the keyboard or are found in different menus. To a PC, a Mac is weird and other but it’s just a different operating system. It’s also worth pointing out that the metaphor extends in that both PC and Mac can get viruses as both neurotypical and autistics can have mental illnesses. Mental illness and Autism are not synonymous and it’s important that that is always made clear.
Another analogy I’ve recently come across is being a cat in a room full of dogs. In an attempt to fit in, you try and join in, playing and running after sticks. But none of these things feel natural and in reality, you’d rather do your own thing (or sleep). And you only want attention on your terms. You are obviously not a dog, but that doesn’t mean you can’t get on with dogs; it just takes a bit of patience.
A good analogy for day-to-day life as an autistic person is the coke can analogy. Throughout the day, each task, each thing that requires concentration and energy, shakes the coke can a little. Over the day, that builds and builds until you’re just trying to keep it from exploding, at least until you get home. Sometimes you can release the fizz slowly but sometimes it’s all too much and the can explodes, resulting in a meltdown.
So far these are all I’ve found that make sense to me although I’m sure there are more out there. How do you explain or describe Autism? Do you use variations of these ones or do you have entirely different ones?
Posted on July 13, 2019
I’m sorry for my extended absence. I never meant to abandon the blog; it’s just been a really, really tough month. I’ve been taking the new medication (or old medication – Phenelzine), which seems to have had no effect other than to upset my stomach. But I’m trying not to give up hope just yet. One of my cats had kittens, which has been incredibly stressful. My depression has reached new lows and I actually started to find it difficult to think at all: sentences would not finish in my brain. It was frustrating and very distressing. I’ve also had quite possibly more meltdowns in the last month than I have had in the previous six. So it’s been hard and writing has just felt impossible. I couldn’t put what I was feeling into words and I didn’t feel like I had anything useful to say, anything anyone wanted to hear.
I don’t quite know what happens now. I love this blog dearly so I have no intention of abandoning it but you may have to be gentle with me as I try to get back to writing. I’m doing my best, I promise.
Posted on June 8, 2019
The last few months have been particularly difficult, anxiety and depression wise. I came of my anti depressants and one of my anti anxiety medications with the intention of starting a new medication but starting that new medication has been a real struggle. This new low brought on by the withdrawal and the lack of meds has been possibly the worst I’ve ever felt. I’m aware that it’s affecting my thinking and my decision making but right now, the starting of a new medication just feels impossible. Just the thought of it triggers an autistic meltdown. So it’s safe to say I’m struggling.
BUT the last week has been better for exactly one reason: I got to see Maren Morris in concert! In fact, I got to see her twice! So that’s what I want to write about: seeing her and how concerts are something that can really help me when I’m feeling very low. There’s something about the energy that just lifts me, makes my body feel lighter and that’s so very valuable when I’m in this place.
My first show of the tour was Bristol. As I’ve mentioned in previous posts, if possible, I like to go to multiple shows of a tour because I get overwhelmed so easily. Seeing the show more than once allows me to really experience and enjoy all of it. Concerts are pretty much the only thing I spend money on so I’ve been very fortunate in this endeavour.
The show was incredible. I’d been feeling very, very depressed in the days leading up to the show and didn’t even want to go – it felt like it was wrong to want such a simple ‘fix’ to my low mood and like seeing such an amazing songwriter would hurt too much given that I haven’t been able to write a song in months (if not longer) – but as soon as Maren Morris took the stage, I started to feel lighter. It felt easier to breathe. She’s an incredible songwriter and performer and her voice is out of this world: I remember once describing it as sounding like a gorgeous sunset. Hearing the new songs was like hearing them for the first time and hearing the old ones was like a wave of nostalgia: they remind me of my degree, of my first trip to Nashville, of writing songs in my best friend’s living room, of a younger, less troubled version of myself.
The song that really got me was ‘A Song For Everything.’ This is what I wrote in my diary after the show:
“Given how emotional and tearful I was, I was crying by the first chorus. It just lifts my soul and makes me feel lighter, like I’m going to be okay, like I need to dedicate my life to writing a song like that and so I have to be alive to do it. I was breathless by the time the song finished.”
“I don’t often cry at concerts (it usually happens when I hear the songs again for the first time after the show) but this one just got me. My depression is the worst it’s ever been but tonight… helped. I could write a book about the emotions of the last few days but I’m so tired that even this is a struggle. @marenmorris, thank you for being there exactly when I needed you to be. Thank you for reminding me that there’s a song for everything and that maybe one of them could be written by me, but that I need to be here to write it. #girltheworldtour“
I had a day to recover before my next show, in London. At the freaking Royal Albert Hall. This is probably my favourite venue I’ve ever been to and it’s my ultimate dream to sing there one day. One can hope. And work hard. Anyway.
The day of the show, I cried all day. I was miserable, deeply, deeply miserable. I was on the edge of a meltdown all day but somehow I was holding it back because I knew if I had a meltdown, I wouldn’t be able to go to the show. Me and Richard (my best friend and writing partner) had bought the VIP packages, which meant we would get to meet Maren before the show and I couldn’t miss that. But even though I was looking forward to it, I was paralysed with anxiety. I didn’t know what to say or do and the fear of wasting the opportunity was so great that I couldn’t think. I couldn’t think my way through the problem and that was almost the worst part.
I cried all the way to London (listening to ‘A Song For Everything’ on repeat) and I only really managed to get myself together when I arrived at Victoria station. Holding onto that song helped somehow. I got to the Royal Albert Hall, met Richard, and we (all the VIP package holders) were all taken in for the pre-show Q&A and meet and greet. It went okay. I’m not gonna lie, I was actually shaking. It wasn’t specifically because I was anxious about meeting her – I’d met her on the previous tour and she’s absolutely lovely – it was more that I was worried about it going wrong, that I’d waste the experience by saying something embarrassing or meaningless. Looking back at it now, it went okay. It could’ve been worse, it could’ve been better. Maren was very sweet but I didn’t feel able to be as honest as I would’ve liked to be, for multiple reasons.
When the doors opened, we went to find our seats and discovered that we were FRONT AND CENTRE. At the Royal Albert Hall. For Maren Morris. I think that was when I first started to feel more excited than anything else – anxious, depressed, lost (“The depression was receding – just out of reach – and it felt easier to smile, even if it was a little slow and stiff.”). And all of that completely fell away when the show started.
It was one of the best shows I’ve ever been to. Maren is one of the best performers I’ve ever seen, her vocals are unmatched, and I love her songwriting more than I can properly express. The upbeat songs were so much fun and the slower songs were quiet moments filled with emotion. It might sound like any other concert (any good concert) but the energy was bigger and bolder and brighter than any other concert I’ve been to. I lost my voice long before the show was over but that didn’t stop me from singing along. And as I said in my diary, “I’m always self conscious dancing but sometimes, if all the stars align, the constant tension in my body releases and I can just move as my mood dictates. It’s not very elegant but it is fun.” She even had special surprises planned: performing ‘Seeing Blind’ with Niall Horan and bringing a string quartet (an all female string quartet!) on stage for several songs. The whole thing was magical. I never wanted it to end. But unfortunately it had to, although she closed the show with style: an amazing performance of ‘The Middle.’ Me and Richard have spent so many car journeys and writing sessions and just hours of our lives singing that song; singing it with Maren Morris from the front row of the Royal Albert Hall may be one of my favourite memories of all time.
Another snippet from my diary: “The performance was incredible and hearing everyone sing along just made my heart soar. It was all gone and I felt alive and light and happy. I was tired and achy but it was amazing.”
Getting home was hard. I had a huge adrenaline crash and all the negative emotions returned and that, combined with several unpleasant incidents on the train, had me in tears before I was even halfway home. I also struggle physically after concerts: my whole body hurts and that was starting to set in so yeah, getting home was a struggle. But I made it and my Mum was kind enough to prepare macaroni and cheese and ice cream (not together), which did help a bit. My brain wasn’t really ready to go to bed but a migraine was setting in (another side effect of concerts) so I didn’t have a choice.
“Yesterday was a very difficult day. The depression was bad; I shook, I screamed, I cried (probably seven or eight times). It was miserable. But in the evening, I got to see @marenmorris at the @royalalberthall and my god, it was like it was built for her voice. What a special artist in such a special venue. Somehow, me and @richardmarcmusic ended up with front and centre seats and the whole show was just incredible. Every second was fun, every second was amazing. I wish it could’ve gone on forever. The tears returned on the train and I cried most of the way home but I am so, so grateful to have been there, so, so grateful to have had that escape for a few hours. I will treasure those memories.”
Recovering from these concerts has been an experience. Over a week later and my back is still bothering me. But it’s an improvement: the day after the London show, I could barely walk and it took days for the limping to fade. But I’m doing better. Surprisingly, the post concert low hasn’t been too bad. Mainly, I just miss being at the show, in the show. I physically miss it. My body misses it. But I’m doing okay. These concerts have given me a lift I desperately needed and will keep me going while I take my next steps, whatever they end up being. For that, I’m incredibly grateful.
Category: anxiety, depression, emotions, mental health, music, video Tagged: anti anxiety, anti depressants, antianxiety, antidepressants, anxiety, asd, autism, autism spectrum disorder, autistic meltdown, concert, country music, depression, girl the world tour, maren morris, medication, medication withdrawal, meltdown, mental health, mental illness
Posted on April 16, 2019
Today is exactly a year since we moved house. That was a terrible day. It was stressful and upsetting and exhausting. I had a meltdown when we finally collapsed in the new house (surrounded by boxes and carefully balanced furniture) and neither me nor my Mum slept that night. It was all just too much.
It’s better now. I’m still adjusting, but then I had spent most of my life in that house so I didn’t expect a quick recovery. I’m getting there. My room almost feels like my room.
Since we moved out, we’ve actually learned quite a bit about the history of the house and the people who lived there. Our favourites are two women who lived and worked together their whole lives, the first head and deputy head of Varndean School. We even found pictures of them, which is really cool. We were all weirdly moved to learn these stories.
When we moved out, I wasn’t thinking about the history of the house and our part in it. I was just trying to figure out a way to say goodbye. So I wrote a letter and tucked it under the loose floorboard in my room. It was a letter to any and all future occupants, asking them to look after the house for us, for me. We’re part of the house’s history now and perhaps, one day, someone will find this letter and feel the same way about us as we feel about these two women. And since we live in a technological age and the first step of investigation is to google something, I thought I’d put this out into the internet. Maybe one day they’ll find me.
To whoever finds this,
This has been my bedroom, on and off, for about seventeen years. That’s most of my life. That’s a surreal thought, one that I’m trying not to obsess over. It took a long time to feel okay about moving and I’m scared that thinking too hard about all of it will be the wind that blows me back into that storm. I didn’t think I’d survive it the first time. I don’t want to leave but I don’t want leaving to be a life altering tragedy. I’m trying to remember that I don’t need this room to be me, even if it feels like that sometimes.
A lot has happened in this room, in this house. I grew up here, watched thunderstorms, brought friends over for dinner, celebrated birthdays and Christmases. I wrote stories and songs and my brother learned lines and turned the flickers of ideas into masterpieces. I said a last goodbye to my cat of fifteen years, learned that I could love another one, and then raised two litters of kittens with her. I taught my dog to sit, sneaked him onto the sofa when no one was home, and sang to him while emptying the dishwasher. I studied for GCSEs, A Levels, and my degree. I graduated with a first and I found out in this room. I had my heart broken. I struggled with my health and my mental health. I found out that my Dad had died.
I worry that leaving this room, this house, means leaving all of those things behind and that I’ll lose myself because of that. It may not be rational but it’s how I feel. I hope that I’ve managed to box all of that up with my belongings but I guess I’ll see when I get to the new house. There’s a little voice in my head that says that the rooms feel empty because we’ve packed all the memories and emotions but I’m scared to believe it.
Maybe this is all too flowery and fluffy for you. That’s fine. A room can be just a room. A house can be just a house. But regardless of whether you see it as four walls or a time capsule, please take care of it for me. For us. We have loved it dearly and hope that you will do the same. Fill it with life (and extra radiators because, as you’ll soon find out, it’s practically impossible to keep it warm). I hope you will feel as safe here as I have.
Look after this place. I’m trusting that you will.
Category: about me, event, mental health Tagged: anniversary, asd, autism, autism spectrum disorder, autistic, autistic adult, autistic meltdown, brighton, brighton and hove, brighton history, childhood home, emotions, england, feelings, goodbye letter, history, home, house, letter, letter writing, letting go, life changing, life event, meltdown, meltdowns, moving forward, moving house, moving on, sussex
Posted on January 1, 2019
HAPPY NEW YEAR!! I hope you have all had a lovely, relaxing holiday period and that you feel hopeful about the year ahead. I’m feeling lighter than I have in a long time and for the first time in months, I’m actually excited about what’s coming next.
But, before we move on to the new year and all the new plans, I want to pause for a moment. This time last year, I set several resolutions – more like goals – for 2018. Now, 365 days later, I want to look back at them and look at how I did, whether I achieved them or not…
WRITE MORE SONGS – Technically, yes. I did write more songs. Not as many as I would’ve liked but more songs nonetheless. As I mentioned in my review of 2018, my depression seemed to completely suppress my creative brain so writing anything was a really struggle. But I’m cautiously optimistic about my songwriting in the near future.
RELEASE MUSIC – Yes, as I said in my halfway-through-the-year post, I have music out in the world (you can listen to my first single, ‘Invisible,’ here). It was a long, hard journey to that first milestone but we made it and I’m excited about what’s coming next.
FIND THE RIGHT MEDICATION – I found many wrong ones but, fingers crossed, I’m onto a good one. Right now, we just have to wait and see (my least favourite sentence in the world).
WORK ON BEING HEALTHIER – I feel really good about this one. Since August, I’ve been going to the gym and swimming for at least half an hour most days of the week and I’ve kept it up for six months. I’m so proud of myself and I love it so much. It helps me make sense of the world and it makes me feel really good. Food is still a daily struggle but I’m not restricting and I’m also not eating everything in sight. So that’s something.
BECOME MORE INDEPENDENT – I feel like I’m going backwards with this one. My depression has been all consuming and just as it started to let up, anxiety rushed in to fill the void. So I’m struggling here. I don’t know what else to say about this one.
READ MORE BOOKS – Yes! I definitely did that! My small, achievable goal was five books and I managed to read ten! So I’m very proud of my efforts in this department. Hopefully I can keep this up going forward.
IMPROVE MY MUSICAL SKILLS – This is another casualty of my depression. My lack of concentration and motivation has just made it impossible to do any consistent practice. Even when I tried my hardest, I couldn’t do it and then I’m really good at beating myself up over it. That’s another thing I need to work on. But as I’ve already said, I’m cautiously optimistic about things moving forward.
GO THROUGH MY POSSESSIONS – Well, I did that. We moved house and so I went through everything as I packed it. That was very overwhelming so I’m sure I missed stuff. I’m still creating a new order and finding things that I can throw out or give away but I made a huge dent in this resolution and I’m pleased with my effort.
So I guess it is now time to make some new resolutions. Watch this space…
Category: depression, emotions, event, holidays, medication, mental health, music Tagged: 2019, anti anxiety, anti depressants, anti-depressant, antianxiety, antidepressants, anxiety, asd, autism, autistic, autistic adult, autistic spectrum disorder, debut single, depression, first single, guitar, happy new year, medication, mental health, mental illness, moving house, new year, new years resolution, new years resolutions, piano, reading, singer, singersongwriter, single, songwriting
Posted on December 8, 2018
The other day, I was just browsing through YouTube (probably procrastinating something) when I came across this video.
“Autism is not a disease, it is a developmental disability. It’s about living our best possible lives with this condition.”
I am ridiculously excited that this video exists. Even a few years ago, when I was looking into Autism as an explanation for my struggles, I was still being told that women don’t have Autism or being dismissed because I didn’t fit into the stereotype for Autism (which has come from autistic boys and men). So the fact that this video even exists shows that some progress has been made. At this moment in time, it has just short of a million views. A million! That means that potentially a million people now have a better understanding of Autism in women. That’s completely amazing!
There’s so much good stuff in this video – you really should watch the whole thing. But here are some of main points and some quotes that stuck out to me:
1. Autism covers a wide spectrum.
2. We have emotions.
3. Social interactions can be challenging.
4. Diagnoses can happen at any age.
5. The nuances of dating can be challenging… but we do have sex lives.
6. We have lots of different interests.
7. Bullying sucks.
8. It’s getting better.
As I said, it’s amazing that this video exists and that autistic women are being seen and that people are finally understanding that autism in women looks different than it does in men, and that it can look different from woman to woman. I agree with all of these points but there’s still so much to it, to living with this everyday. So, in addition to these points, this is what I, as an autistic woman, want you to know:
Posted on December 1, 2018
I’m not quite sure how to describe the last few weeks. Intense, maybe. There’s been a lot going on and I’ve done things and felt things that I’ve wanted to write about but couldn’t figure out how. So I’m writing this, with the good, the bad, and the weird of the last few weeks.
So first, I got to take part in a research study for the Centre for Research in Autism and Education at University College London. I’ve written about my experience with research studies before (here) so I won’t ramble on but I love doing them. It often feels like Autism takes opportunities away from me but this allows me to do something I’d never expected and that’s really exciting. I got to put the EEG cap back on and have my brain waves monitored while I did some computer tasks. It was investigating perceptual capacity in Autism (which I’ve written more about here) and it was really fun, like a Windows computer game from the nineties. And apart from trying to get the saline gel out of my hair, it was a really great experience.
I also went and gave blood for the first time. That was very exciting! I’ve wanted to give blood for years but up until now I haven’t been well enough or I was on medication that disqualified me. So getting to do it was really exciting and a really cool experience. Everyone was really lovely and I’ve since had a text telling me where my donated blood has gone. So the whole thing was really special and I will definitely do it again.
Despite these cool and inspiring experiences, my mental health has been pretty bad: I reached a new low with my depression. I feel like I’m always saying that the current period of depression is the worst it’s ever been but for me, there are real differences: new thought patterns, new emotional states, new lines, new fears. Each period of depression has a different colour. Anyway. It’s been really bad and really hard and I’ve had some desperate moments.
Medication wise, it’s been a rollercoaster. As per usual. I got myself all but off the Amitriptyline a while ago but I just wasn’t ready to try another medication straight away. It’s a tough process and I just needed some time to feel steady, even if that was steadily bad. Maybe not the most logical decision I’ve made but it made sense to me at the time. And ultimately it doesn’t matter now. I’ve started the Clomipramine, which is what everyone wanted me to do. Finding the right medication and the right dosage can be pretty gruelling and I just needed to be in the right mental headspace. I’m not sure how I feel about the Clomipramine but it’s still early days.
And on this last Monday, I went to see Maren Morris play an amazing, intimate show at OMEARA in London. The staff were great about making it accessible and I was let in without having to queue and there was a chair reserved for me – I really, really miss the days where I could stand for hours without a problem. And the show was fantastic. Maren is one of my all time favourite artists/songwriters and it was one of the best shows I’ve ever been to.
“When this wonderful world gets heavy and I need to find my escape… yeah, I guess that’s my church.” // @marenmorris was a complete dream tonight. Beautiful, beautiful songs, singing, and stories. My little songwriter soul is so happy. (x)
It might be blurry but I love this photo of me and @richardmarcmusic after the @marenmorris show tonight. We had SUCH a good time. We’re constantly listening to her music, whether we’re in a songwriting session or just chilling out and playing Mariokart. So we were two happy beans tonight. (x)
And now it’s December. Most of my family have birthdays in December and January and of course there’s Christmas and New Year. So that’s a lot of fun things but it also means a lot of high emotion and stress. It’s a tricky time. I’ve found Christmas difficult for the last few years so I’m going to have to be careful to manage my physical and mental health throughout this period. I’m going back to the post I wrote last year about managing Christmas with anxiety and Autism – if that sounds like it might be helpful, you can find it here.
Category: depression, event, medication, mental health, music Tagged: amitriptyline, anti depressants, antidepressants, anxiety, asd, autism, autism research, autism spectrum disorder, autistic, autistic adult, blood donation, brain waves, centre for research in autism and education, christmas, clomipramine, concert, country music, crae, depression, eeg, giving blood, live music, maren morris, medication, mental health, mental illness, research study, ucl
Hey! I’m Lauren Alex Hooper. Welcome to my little blog! I write about living with Autism Spectrum Disorder, as well as a number of mental health issues. I’m also a singer-songwriter 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.