Posted on April 1, 2018
I know I touched on issues with food already this week but I thought I’d go into a little more detail so those of you who don’t experience this difficulty can get a glimpse into what it’s like. Food is a massive problem for me; it’s a daily cause of stress. Where am I going to be? Will there be food I can eat? If not, can I bring my own food? Can I get away with not eating or will people notice and point it out? It’s a constant loop and that is exhausting.
As I said in a recent post, I’m incredibly sensitive to the flavour of food; add even the smallest sprinkling of pepper to a meal and I can’t eat it. It overwhelms me and I just cannot eat it. Forget spicy food entirely. So I can only eat the simplest things: plain rice or pasta, unadorned chicken or fish, and so on. I practically live on fruit and vegetables. When there are lots of different flavours, I get overloaded. I can’t describe it better than I did in my sensory sensitivity post: “It’s like throwing a load of different coloured paints together: you don’t see all the different colours, you just get one new colour and it often isn’t a nice one.”
I’m also very sensitive to texture; there are very few things that don’t trigger my gag reflex. I’m sure all of you have experienced that at one time or another so you can imagine how desperate I am to avoid it. I remember a particularly bad experience with tofu; I’m actually shuddering just thinking about it. I have a similar problem with wet foods touching dry foods. It triggers the same response. So while my family – who are all fairly adventurous when it comes to food, at least from my point of view – flip through a library of cookbooks, I eat simple meals with ingredients that I can separate and I eat them over and over again.
Honestly, I don’t mind that. It’s safe. It’s comforting. It’s the pressure to eat ‘like a normal person’ that’s stressful. Going to restaurants and eating in public is a major anxiety: it’s very rare that there’s something on the menu that I feel able to eat and asking for something simple feels impossible. I find asking for anything difficult and drawing attention to this issue is something I try to avoid if at all possible.
As a child, I was labelled a picky eater and strongly encouraged to try different food. I know that my family and friends were just trying to help me: they were trying to prepare me for a world that would expect me to eat complicated food. But instead of it getting easier, it got harder. So eventually we reached this uneasy stalemate. But getting a diagnosis made a massive difference: it gave people an explanation, made them realise that it was something I couldn’t help. It took the pressure off in a big way. But as important as that is, it hasn’t fixed my problems with food. And as much as I struggle with it physically and struggle to get the right nutrition, it also has a big impact on my mental health.
People make assumptions when they hear how little I can eat. They think I’m being picky or deliberately difficult and see me as an inconvenience. I know that it’s not my fault and that it’s a valid reason to struggle but I find it incredibly embarrassing that I can’t eat like everyone else. I feel like it keeps me from really becoming an adult, especially when so much socialising revolves around the consumption of food and drink. It feels like a weakness; it’s something I’m ashamed of, which definitely feeds into both my body image issues and my depression, as well as my anxiety. When I get really low, as in dangerously low, food becomes even harder and I just lose the will to eat all together.
I vividly remember being about ten years old and reading a magazine article about a girl who had to have intravenous nutrition for medical reasons and I found myself wishing I could have the same, wishing I could not eat because it would be so much easier. And I still relate to that. I would give anything to be in control of this, rather than it have control of me. I wish I could choose what to eat, rather than navigate around the things I can’t. I wish I could eat according to my beliefs instead of having to worry about whether I’m getting enough protein or calcium or whatever (I would love to be a vegan, or even a vegetarian, and often feel guilty that I’m not but health wise, it’s ill advised when there’s already so little that I can eat). I wish I didn’t have to be afraid of blowing a sensory fuse, of getting completely overloaded, which can trigger a meltdown. I wish I could enjoy food. But I can’t and I’m scared I never will.
Category: anxiety, autism, body image, food, mental health Tagged: actuallyautistic, asd, autism, autism awareness, autism awareness week, autism diagnosis, autism resources, autism spectrum disorder, autistic, autistic adult, eating, food, food sensitivity, health, senses, sensitive, sensitivity, sensory, sensory overload
Posted on March 12, 2018
So, while this isn’t specifically a post about mental health, it is about how my mental health affects my life and the things that I want to do so I think it’s still relevant and maybe useful to someone else. There still aren’t a huge amount of resources for people with Autism and music festivals aren’t a naturally autism friendly situation: they’re loud and busy and overwhelming. The obvious advice is to avoid the conditions that cause you distress but when you love music and live music, it’s not that simple. This thing that I love is also a great stress. So it has to be about balance. Am I having a good time? Is this taking more than it’s giving?
So, let’s begin. For those of you who don’t know, Country2Country is a country music festival in London, Glasgow, and Dublin. In London, it’s three days at the O2 Arena with little stages throughout the complex and a big arena show in the evenings. I love country music and I love the country music community in the UK so there are a lot of positive moments but a lot of stressful ones too. I thought I’d write out a little overview of the festival, the good points and the bad, and how the whole thing fitted into the picture of my mental health and experience of Autism.
The biggest consideration for events like these is my lack of energy, especially with my recently increased struggles with fatigue. Standing is a huge part of any festival and for me, standing for extended periods of time (and by that I mean more than a few minutes) results in shaking, dizziness, and overwhelming nausea. Not to mention the disproportional levels of fatigue that build and build until I physically can’t stand up anymore. Most of the shows are standing, especially the ones during the day. And like any concert, there’s the expectation that you stand, as if standing means you care more than someone who’s sitting. My fatigue has been so bad lately that I only went to shows where I knew I could sit down and even then, I really struggled. I had to really pick and choose what I could go to and that came down to an upsettingly short list. But I was determined to enjoy what I could manage.
My 2018 C2C experience began on the Thursday night with a Songwriters’ Circle where a group of songwriters take turns playing songs they’ve written (that have often been released by other artists) and sharing stories about writing them. I love these events: they’re usually pretty laid back and very inspiring. It is one of my favourite things to hear songs as they were originally written and to hear how they turned from nothing into something. I was almost at the back but I was just so happy to be there. The line up was Brett James, Luke Combs, Nicolle Galyon, Kip Moore, and Natalie Hemby who is one of my all time favourite songwriters so I was very excited and they did not disappoint. They played old favourites as well as new songs but I think everyone agreed that Natalie’s performance of her song, ‘Jealous,’ recorded by Labyrinth, completely stole the show. Although I must also give an honourable mention both to Nicolle’s performance of ‘Consequences,’ recorded by Camila Cabello, and Luke Combs’ new songs. And to round off the night in the most perfect fashion, I managed to hang out with Natalie for a few minutes after the show and she was even lovelier than I remembered. So with that as a first night, the standard was set pretty high!
My excitement was so high that I did crash afterwards. I was completely overwhelmed by nausea twice on my way home, to the point where I had to sit on the ground and just breathe until it faded. This is one of the side effects of my most recent medication (for depression) and it’s one of the worst I’ve experienced but once it passed, I was okay. The emotional energy I get from live music and from being inspired and from talking to these wonderful people is unlike anything else. I could live off that night for days, even weeks, and that’s without the rest of C2C. It’s like feeding a dying fire; I come back to life.
Having had to go back home to Brighton, Day 1 of C2C began with travelling into London. My first event of the day was a very exciting one: an exclusive listen to The Shires’ upcoming album. I’d applied for a ticket and not gotten one but one of my friends in the UK Country community offered me their plus one. I can’t put into words how much that meant to me. I’ve been listening to The Shires since their first single came out and I actually went to one of the events they held when releasing their first album. I’ve already said it but I absolutely adore the UK Country community: I’ve met so many wonderful people (and now great friends) while queuing for gigs or while waiting in meet and greet lines and it is just the kindest, most generous group of people. For this event in particular, I saw so many people offering their tickets to people they knew desperately wanted to go and I was so touched to witness that. Personally, I had three people offer me a ticket because they all knew how much I wanted to be there. How amazing is that?! You’ll get no spoilers from me but it was better than I’d hoped it would be and I felt honoured to be there. Ben and Crissie are such lovely people and it has been so special to watch their journey up to this point. I’m honestly so excited to listen to all of these new songs over and over when the album comes out.
We weren’t allowed to use our phones in the session so, for the purposes of this blog post, I took a photo of The Shires appearing in the official highlights video.
I genuinely loved hanging out with everyone and catching up afterwards but it wasn’t long before I started to struggle. I powered through for a while but when my legs started to shake, I had to call it and headed back to where I was staying, although I did have to sit in North Greenwich station for a while because the shaking and dizziness got so bad. I would love to be able to wander around and spend the day listening to artist after artist but it’s just too much for me: my lack of energy, the constant high level of noise, and the overwhelming amount of people. With the latter two, it’s like my brain becomes overloaded and that can trigger a meltdown. I haven’t written about meltdowns very much so far on this blog (although I mentioned them here – a more in depth post is on the list, I promise!) but one way to explain it would be to imagine tapping on glass that has a crack in it. While one knock doesn’t do much damage, they build up and eventually it shatters. That’s how incoming sensory information feels to me. When I reach overload, I experience extreme anxiety and that can lead to crying, screaming, self harming, etc. Obviously that’s not something I ever want to experience in public, with people that I don’t know, where I don’t feel completely safe, so I have to be aware of how close to that point I am and retreat to a safe place when everything starts to feel too much. I went back to where I was staying and had a couple of hours of quiet time before heading back to the O2 for the arena show.
Kelsea Ballerini was my priority with Tim McGraw and Faith Hill’s headline set coming in second; I would have to assess my capabilities throughout the night. Getting into the O2 Arena always stresses me out: there could be a problem with the ticket, they might not let me take my bag in, the metal detector could go off and they’d want to pat me down… All of those things cause me a lot of anxiety before going into a concert but fortunately everything went smoothly this time (having said that, that anxiety still takes a lot out of me, even when the things I’m worried about don’t come to pass). It always surprises me that people can’t seem to tell how anxious I am because to me, it’s everything. It’s all I can think about. But as I said, it was simple, so that anxiety didn’t turn into anything else.
“Can I be Kelsea Ballerini when I grow up? What a fab show. I loved every second of it. I may have cried a little bit because I want to write songs and sing them too and I want it so badly but that’s not necessarily a bad thing. We are made to love things and I love music unapologetically.” (x)
Kelsea Ballerini was fantastic. I’ve now seen her three times in the last year and she’s such a great performer. I got completely lost in it and that was wonderful, even if I did cry a bit because I want that to be me so badly – that’s not something I can ever really separate myself from. But I had a really awesome time, and I actually managed to lose myself in the music and not feel so self-conscious about enjoying myself. Normally, I can barely move for feeling so exposed to everyone’s opinions. So that was really fun. Also, we all need someone to look at us the way Kelsea looks at her audiences…
By the end of her set, I was feeling very shaky and since I wanted to be well enough for Sugarland the next night (I’ve been waiting eight years to see them live!), I decided to go home. That was derailed a bit by some stuff going on with a friend that didn’t exactly help my anxiety and by the time I got home, I was completely exhausted. As is normal after days and evenings of high emotions, it took me a long time to get to sleep but then I slept so deeply that when I woke up, I was so disorientated that a week could’ve passed. Apparently the previous two days had tired me out more than I’d thought because I slept for most of the day and only really managed to get up in time for the arena shows. I was pretty shaky and anxious but having some of my family with me definitely helped.
Sugarland were freaking awesome. One of my parents played me a few Sugarland songs about eight years ago and ever since, I’ve absolutely loved their voices, their songs, and their energy. If I’m jamming out in the car, it’s most likely to a Sugarland song. So we were both super excited when they announced that they were getting back together and even more so when they were on the line up for C2C. We sang and danced (while sitting down) through the whole thing and it was so, so fun. It couldn’t have been better. I mean, there were more songs I wanted to hear but I do understand that they couldn’t just keep playing until they’d performed their entire repertoire. Mostly… Anyway, I was and am a very happy bean for having finally seen them live. It was a dream come true.
“I didn’t think I could love Sugarland any more than I already did but after last night, I absolutely do. The show was incredible and after waiting eight years, it was a dream come true. Apologies to the people behind me for all the crazy dancing and dramatic singalong.” (x)
The headline act of the night was Kacey Musgraves who I have loved since her first album. When I bought my tickets, I decided that I wanted to see her more than anyone on the Sunday so I decided to push myself to stay for her and then not go the next day. I was okay with that trade off and it was worth it. I’d sort of forgotten how much I love her and her writing style and it was so great to hear both my old favourites and some new songs from the upcoming album. I struggled a bit with the graphics on the screens; they made me a bit dizzy and gave me a headache. But it was a great show and I can’t wait for her to come back to the UK in October. I was worried about being in the underground with masses of people so we left a little bit early and had a relatively easy journey home.
“Kacey Musgraves is a princess. I’m loving the new songs.” (x)
It was a good weekend, if a tiring one. I spent the next day in bed, tired and achy and a bit overly emotional, but that’s not an unexpected consequence of an event like this. It takes a lot out of me, on lots of different levels. Because of all the thinking and restricting and careful planning, it wasn’t too bad but I wish it were easier. I wish I didn’t struggle so much and I wish my abilities and my needs weren’t so incompatible with the way the world typically works. Being out in the world is stressful and overwhelming and most places don’t come with a built in quiet room to hide out in while I recharge. It doesn’t help that I find it really difficult to ask for support. I feel like I’m failing for succumbing to these problems and that I should be strong enough to power through, which I think comes from being diagnosed so late: I’ve spent my life thinking this way and it’s not an easy habit to break.
I hope that this has been helpful, or at the very least gives an insight into what it can be like to go to a festival such as Country2Country when you have Autism, when you struggle with your mental health. The positive moments are unrivalled but the difficulties are freaking difficult.
Category: anxiety, autism, event, mental health, music, snapshots Tagged: actuallyautistic, anxiety, autism, autism awareness, autism spectrum disorder, autistic, autistic adult, autistic spectrum disorder, country music, country2country, country2country festival, exhaustion, fatigue, kacey musgraves, kelsea ballerini, medication, meltdown, meltdowns, mental health, mental health awareness, music festival, natalie hemby, nicolle galyon, overload, sensory overload, side effects, songwriters, songwriting, sugarland, the shires, tiredness, uk country
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 other 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.