Finding HopeA Letter Under The Floorboards
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.
LAH
16/04/18
Meltdowns, Halsey, Halsey, and Meltdowns
Posted on October 20, 2018
I’ve never really written about meltdowns before. Not long after I started writing this blog, I started taking Venlafaxine for my depression, which essentially numbed me to all my emotions. And since my meltdowns have always come from an emotional place, I basically stopped having meltdowns. But I couldn’t deal with not being able to feel anything: everything I do – writing, songwriting, relationships, choices – everything I do is based on emotion. So I came off that medication and my emotions (and my ability to think clearly) came back. But I hadn’t had any meltdowns until recently.
A couple of weeks ago, I was supposed to be going to see Halsey in London, something I’ve been looking forward to for years. Since I saw her in 2016. I love her songs – a masterclass in lyric writing, melody, production, songwriting in general – and she’s an incredible performer, one of the best I’ve ever seen. I particularly love the Badlands album: somehow the songs just make me feel brave. So I was really, really excited.
If you’ve been keeping up with my blog, you’ll know that my depression has been particularly suffocating recently and when it’s that bad, being out and around people is incredibly difficult. Sometimes talking about those emotions and the strength of them is helpful: just letting it out of my body lessens the pressure and makes it easier to cope but sometimes, like this time, it’s like a crack in the dam. It just started pouring out and I couldn’t reign it back in. I was desperate to get to this show though so I kept trying.
My Mum drove me to the station but when we got there, I couldn’t get out of the car. It was like a magnetic force preventing me from getting out of my seat, from making decisions. My Mum suggested alternative ways of doing the day but I could feel all the possible decisions and deviations spiralling away from me and I ended up shouting that I needed her to stop (all that anxiety and stress and emotion just exploded out of me). I just couldn’t. I couldn’t find the right decision but I knew when they were wrong. So my Mum said she was going to drive me to London and take me to the show. That’s the only way I was going to be able to go. So that’s what we did.
This is one kind of meltdown. There seem to be different variations of them based on the situation. Usually, I can’t do anything after having one; usually I just have to go and sleep until I feel like myself again. But my desperation to go to the show pulled me through all of that somehow. It took me over an hour to be able to think clearly and make sentences again and by the time we got to the show, I was just about functional – I could walk, I could interact with others (although I still couldn’t make eye contact with anyone) – although I felt like I was in a different dimension to everyone else: we could see each other and interact but it was like we were on different frequencies. I’m mixing my metaphors I know. Meltdowns mess with your head.
It was an amazing show. Halsey shows are unlike any other shows in my experience. She gives everything to her performance. The energy is just off the charts, her vocals were incredible, and the stage/backdrops are complete works of art. The songs I loved before, I loved even more. The songs I liked before, I loved by the end of the show. The performances and the stories she tells about them make every single song special and I will hold on to all of it forever.
Because of the meltdown, I was in a really strange headspace: I felt far away and disconnected and kind of lost. So I couldn’t enjoy the show in the way I would have had I not had the meltdown. But I did enjoy it and looking through my photos and videos makes me so, so happy and grateful and proud that I managed to get there. And it helped somehow. I can’t really explain it but it helped. It’s like it filled in all the cracks with gold, to use a Japanese art form as an analogy.
I got home, went to bed, and got up the next day, ready to do the whole thing again, although without the meltdown (or so I thought). As an autistic person and a concert lover, I really like to go to shows twice where possible. With the lights, visuals, music, the scream, the energy expended, the energy expended getting there… I find it incredibly difficult to process everything and I get overwhelmed very quickly. It all starts to pass through me without really landing. Fortunately, the only thing I really spend money on is concerts so that is something that I am sometimes able to do.
For several days after a meltdown, I feel really, really fragile. So my Mum – my hero – said she’d come to the show again. Thank goodness she likes Halsey too. So we drove up to London, got to the venue, and really enjoyed the show. My god, Halsey is just so good. And seeing it twice just meant that I could take in all of it and that was just so amazing. Some of my favourite moments include (I could easily list everything but I’ll try my best to just keep it to a few):
- The opening song, ‘Eyes Closed,’ will always be special to me because of the feeling it created. The energy in the room lifted by tenfold and it was the closest thing to magic I’ve ever experienced.
- How she left it to the crowd by shout the lyric, ‘Do you call yourself a fucking hurricane like me?’ I wasn’t expecting that and the intensity of the crowd just took my breath away.
- The visuals for ‘Hurricane’ were the most beautiful things I’ve ever seen. And during the song, she shouted, ‘London, this song is a reminder that you do not belong to anybody but yourself!’
- The little B stage that I thought was made up of LED lights but was actually covered in water (I really have no idea how to explain it) where she and her dancer stamped and kicked water into the crowd during ‘Don’t Play.’
- The volume of the crowd when everyone sang along to the stripped down version of ‘Closer.’
- The way she sat and talked to us, the story she told about ‘100 Letters,’ and how she finished by saying, ‘You only get one you in this life. Do not waste it on someone who doesn’t appreciate who you already are.’ Maybe it sounds cheesy but in the moment, it almost brought me to tears. I’m tearing up even now as I write this. The shows were just one empowering moment after another and for that, they will always be incredibly special concerts to me.
- The beautiful flower backgrounds for ‘Now or Never.’
There are so many more moments I could name but I’ll leave it there. They were two really incredible concerts and I feel so lucky to have experienced them.
When the show finished, I was absolutely exhausted, physically and mentally. Walking down the stairs to the venue exit was physically painful. I’d specifically bought a seated ticked because I don’t have the energy at the moment to stand for such a long period of time but there were two girls who stood for the whole thing (almost everybody sat behind them ended up standing in the aisle so that they could see – they refused to sit down or move despite the disruption they were causing) so I kept having to stand up to see. My whole body hurt by the time it was over. Apparently that’s another unexplained Autism thing: fatigue and pain and so on with no obvious cause.
We made it out of the venue and were halfway across the street – standing on the traffic island – when an ambulance less than a few feet away turned on its siren. I don’t know if I can really explain it: it’s something so deeply rooted in emotions and sensory stuff that I’m still searching for the right words. I might never find them. But the sound – the high-pitched, ear-splittingly loud sound – just completely overwhelmed me in a split second. It was like it blew a fuse in my brain and suddenly I was screaming and my knees buckled and I would’ve hit the ground if Mum hadn’t caught me. At some point the screaming turned into crying and shaking and somehow my Mum got me onto the tube, back to the car, and home to my bed and my cats. It took most of the journey before my brain reengaged and I could think in complete sentences but even then I couldn’t talk. It just took too much energy.
We got home, went to bed, and I spent the next few days recovering. In truth it took me over a week to feel like myself again and to process and commit to memory the amazing moments from the concert before the meltdown, before my brain shut down. It was a lot to make sense of. Meltdowns are traumatic and I don’t use that word lightly. I will write more about them, when I’m in a more stable, more composed place. I’m more than a bit all over the place at the moment. But this page here is an amazing resource so do have a look at that if you want to know more about meltdowns (and shutdowns).
And just in case:
Thank you Halsey (I never know whether to think of you as Halsey or as Ashley). Thank you for an amazing show and a treasured experience. It might’ve been a rough weekend but the shows were worth the meltdowns. Concerts make me feel alive, make me feel real. You gave me that and I’m really grateful.
Snapshot #1: Country2Country Festival as an Autistic Person
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.
One Woman With Autism
Posted on October 14, 2017
Ask anyone about Autism and they’ll most likely describe the stereotype: difficulty socializing, a ‘lack of empathy’, specific and focused interests. But, as with everything, it’s so much more complex than that, especially for girls and women with Autism. While there are various statistics on the ratio of boys to girls, it’s clear that there are many more girls and women with Autism than was originally thought. And because the diagnosis of Autism has always been based on the male presentation of Autism, it can be really difficult for girls and women to get diagnoses and support. I can’t speak to anyone else’s experience but I can speak to mine.
I was a shy kid. I was so shy, and so anxious, that I couldn’t be left at after-school clubs or activities. I was petrified and cried until my Mum would take me home. I was constantly told I was too sensitive, that I took things too personally, that I needed to grow a thicker skin. And that really upset me – but then I was being too sensitive, wasn’t I?
These issues continued through my childhood and into my teenage years. I was always anxious and strived for perfection in everything. I was a vigilant rule follower; I couldn’t, and still can’t, break a rule for anything. I was terrified of turning in homework late, convinced it was an unforgivable act. The one time I did forget a piece of homework (because I’d taken it out of my bag to check I’d packed it and then forgotten it in a panic about being late – another constant anxiety), I cried in a corridor and my hands shook when I told my teacher. It was fine, of course, but it didn’t help my anxiety. I was so scared of doing something wrong, of getting into trouble.
In addition to that, I never felt like I quite fitted in. Anywhere. I felt like I was stuck behind glass, separated from everyone else and unable to break through it. Everything seemed so much easier for everyone else; everything they seemed to do effortlessly took all of my energy, leaving me exhausted. I couldn’t understand why I just couldn’t cope as well as everyone around me. For some unknown reason, I couldn’t function as well as everyone else and that made me feel like I was broken. Despite all of this, no one clocked that there was a problem, not a doctor, not my family, not me.
What had always just been a feeling of not coping started to take over other areas of my life. I’d always done well as school, despite missing more than eighteen months when I struggled with an unidentified illness that caused debilitating fatigue. My lowest grade at GCSE was an A (although I was disappointed with not having achieved more A*s). I got to Sixth Form and everything changed. Suddenly every class, every test was a struggle. Learning and applying knowledge had always been something that had come easily to me, something I’d enjoyed, and all of a sudden, it had become so difficult and that was incredibly distressing. My anxiety got higher and higher and depression started to creep in. I was constantly exhausted and just getting through the day started to feel like an impossible task.
The turning point came when I failed an exam. I locked myself in a toilet stall and scratched at my arms over and over with a broken paper clip, desperate to feel anything other than this howling feeling of failure that came from somewhere deeper than I’d ever experienced. I don’t know how long I sat there and I don’t remember much of that day, but that was when my family and I started to realise that there was something really wrong.
A lot went into getting my diagnosis. I’ve lost count of all the doctors I’ve seen, the amount of times we left without any answers, the amount of books we read. I’ve been diagnosed with multiple mental health problems and tried a lot of different medications. I tried various therapies like CBT and EMDR. Nothing helped. But due to my Mum’s never ending commitment, I ended up at the Brighton and Hove Neurobehavioural Service and after several hours answering questions, I walked out with a diagnosis of Autism Spectrum Disorder. To start with, I was too exhausted by getting to that point to take it all in but slowly, everything started to make sense. All these disconnected pieces of my life and my personality began to click into place.
I’ve always felt emotions strongly. If something goes well, I feel like I’m bulletproof. If something goes badly, I can end up in a meltdown: crying, shaking, screaming, and often self-harming. Either that, or I go into shutdown where I retreat to my room and lie in the dark, unable to think or talk properly. Sometimes a meltdown leads to a shutdown and it can last for days, or even weeks.
I’m extremely sensitive. To a lot of things. A change of plan, loud noises, bright lights, unfamiliar people and places, all of those things increase my anxiety, making it difficult for me to function, to make decisions, to interact with people or the environment around me. Processing that information takes a lot of energy and I’m easily exhausted and overloaded. Too much sensory information, too many demands placed on me, the closer I get to a meltdown. It’s a fragile existence, like walking on a tightrope.
I’ve never had trouble with empathy, with ‘stepping into another’s shoes’. Or more accurately, I’ve never found that difficult to do. My struggles tend to be with the other extreme: I’ve been told I’m too empathetic. I frequently experience other people’s emotions as if they’re mine and with such strength that I feel completely overwhelmed. It’s strange and upsetting to, for example, feel grief for someone I didn’t know. It can feel like I’m intruding even though all I ever want to do is help because I know how strong those emotions can be. It’s incredibly difficult for me to see someone upset and not be able to do anything. It can also be very difficult to do something as simple as walk down the street. I just feel overwhelmed by how big everyone’s lives are, how much makes up a person: memories, favourite colours, foods they hate, things they want to happen, things they don’t want to happen, phone numbers they’ve forgotten, songs stuck in their heads. I could go on forever. And when I’m surrounded by people, I feel all of that pressing in on me. It makes it hard to breathe.
Socialising is difficult. Again, processing all the information around me takes a lot of energy: a person’s words, body language, tone, how other people are reacting, everything going on in the background. It’s hard work. It feels like everyone else has a rulebook that I never received and so I’ve had to learn how to be social. Where everyone else processes all this information automatically, I have to actively process it, which takes a lot of energy. So it’s not hard to imagine why I’m tired out very quickly by social situations. Of course many people don’t notice this and have no idea that I’m autistic. Even the visible signs go unnoticed, like my difficulty with eye contact. Aside from the fact that I have no idea how long you’re supposed to hold eye contact for or which eye you’re supposed to look at it, I also feel very vulnerable when someone is looking into my eyes, like they can tell what I’m thinking and feeling.
I do have my own specific interest: writing, in all forms, but my favourite is songwriting. I’ve read a bit about these focussed interests and apparently the interests in the female presentation of Autism tend to go under the radar because they can be similar to a neurotypical girl’s interests, like animals, TV shows, books, particular singers or music groups. It’s the intensity that’s different. I’ve never simply liked something; once I’m interested in something, nothing else matters. When I’m writing, I lose all sense of time. I recently spent ten hours working on a particular piece and only stopped because I noticed my hands shaking. When I looked up, it was dark and I realised that a whole day had passed and I hadn’t eaten. Writing, and writing songs, is everything to me. It’s the only thing I want to do, the only thing I want to do for the rest of my life. It’s hard though, because there’s a big part of me that feels like my life isn’t worth living if I’m not doing that one thing, if I’m not doing songwriting. The music industry is tough as hell so it’s terrifying to think like that. But that’s the truth.
Of course there are other symptoms and this is just one presentation of Autism. As the specialist that diagnosed me said, we are the experts of our own Autism. But, in my experience, it’s really hard. And it’s made harder when there’s so little understanding around the way Autism affects girls and women. Life post-diagnosis is difficult but at least I know what I’m struggling with. I’m learning what helps and what doesn’t. Not knowing was awful. I felt like I was drowning, like I couldn’t even find the surface. And the years of asking for help and being turned away made it worse. The lack of awareness and understanding about how Autism affects girls and women has real consequences. The time it takes to get a diagnosis and the repeated invalidation causes problems of their own. The people supporting me now think that that was part of the reason I developed Borderline Personality Disorder, a mental health problem that involves instability of mood, behaviour, and self image. And I will never forget one particular doctor’s opinion, that maybe that’s just how life was going to be for me. That remains one of the most upsetting experiences of my life and years later, I’m still struggling to believe that I will ever be happy.
I am so lucky to have found the people who are supporting me now and I feel it because I know that without them, there’s a very real chance that I wouldn’t be here now. But there are so many people without this support. There needs to be more information, more awareness, more understanding of Autism in women. Too often it goes unidentified and the effects of that can be worse than the struggles caused by the Autism itself.
