Stepping Back in Time

Sometimes I wonder about what it would be like if I could go back to secondary school and to sixth form but with everything I know now. Obviously it would help with the lessons and exams but what I’ve learned about myself would’ve completely changed my experience of school. I’m such a different person at twenty-three than I was at sixteen or eighteen (as I would hope we all are). Throw in the ups and downs of my mental health and I’d say I’ve learned a lot in those years. I’ve been thinking about this on and off for a while now so I thought I’d write down some of these thoughts and compile them here:

On Choosing Subjects To Study – I am fascinated by what my life would look like if I’d known I was Autistic, if I’d known about my mental health challenges, and this is a good example of that. Because of the identity issues that often come with BPD, choosing the subjects to study at sixth form was distressing. How was I supposed to know what I wanted to study when I didn’t know who I wanted to be, who I was even? I want to write about identity a lot more but it’s such a big subject that I haven’t managed to tackle it yet. I promise I will. In this case, I knew I liked Psychology and I knew I liked Maths but I wasn’t sure what to pick for the final two options so I did what I always do when faced with a question about myself that I don’t know how to answer: I filled the empty space with real people and fictional characters that I liked and admired, people that embodied the things I wanted to be. That was how I ended up choosing History and Physics. I don’t regret those choices but now that I know that that happens, I approach things differently.

On Standing Up For Myself – I was fortunate not to go through any extended periods of bullying during my school years. There were a couple of incidents but they never went on for very long; they either got bored of me ignoring them or I pushed back which made them stop. But I had several teachers who didn’t behave particularly well: shouting at the class, humiliating us, telling us we were stupid, etc. Back then, I just kept my head down; I didn’t want to draw any attention to myself. I was terrified of getting in trouble and standing up to an authority figure was something I just didn’t know how to do. I was just trying to get through it; I didn’t know that I didn’t deserve to be treated like that, that I could push back against it. Were I in that situation now, I wouldn’t let someone treat me that way, let alone anyone else. If it wasn’t abusive, it was a downright unacceptable way to treat the children they were responsible for.

On Trying To Fit In – When I was younger, especially in my early teenage years, I would look at the girls in my classes and in my year group and wish that I could be one of them. They were all so pretty and seemed to have everything and had been friends all their lives. I’d missed a lot of school due to illness and there was some hard stuff going on at home and my one good friend had just moved to the US. I felt very alone. I wanted to belong somewhere. I went on to find some amazing friends – many of whom I’m still friends with now – but the feeling of belonging is a hard one and one that I guess I’m still learning how to handle. But if I was going to secondary school all over again, that isn’t something I’d worry about. I think that the need to belong isn’t so urgent when you feel like you belong to yourself. I’m not all the way there yet, but further down that road than I was at sixteen.

On Blending In – It wasn’t until I looked back that I realised I was trying to be invisible. I didn’t put my hand up when I knew the answer, I hated any activity that required me to be at the front of the class, and I did everything I could to avoid drawing attention to myself. Even the way I sat – hunched over, trying to make myself smaller – reflected that. And yet I was desperate not to be forgotten. Apparently teenage me was an oxymoron. But no, I get it: I didn’t know who I was and I didn’t want people to know me, or remember me, as something I wasn’t. And worse case scenario, I embarrass myself and that be what people associate with me forever. But as I started to know myself, this behaviour started to change. Finding something that I loved and something that made me feel like I was where I was supposed to be, i.e. songwriting, really helped with that too. In a way, finding that gave me permission to exist, to take up space, and that gave me confidence. These days, I can look at myself and feel so unsure about everything but all I have to do is look back to know how far I’ve come.

The last couple of weeks have been hard, mental health and medication wise, but I’m hopeful that that will start to ease and then I can spend more time and energy on here. Thank you, as always, for reading.

One Woman With Autism

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.

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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.

10 Lessons I Learned at 22

Yesterday, I turned 23. That feels very strange to write and even stranger to say out loud. For some reason, 22 to 23 feels like a bigger jump than 21 to 22. I don’t know why. It just does. And so I’ve been thinking about this a lot, about this last year and the next one. A lot has happened, good and bad. So here is a post about what I learnt this year, what I learnt while I was 22.

1. You do get over things you never thought you would – I learned this last year but I really learned it this year. Last summer, I received a piece of news that felt pretty devastating but now, a year later, I seem to have adjusted to it. It’s strange how our emotions, how our brains work on things in the background. I didn’t do anything to work through this issue (it felt too upsetting to even talk about); I just slowly got used to it.

2. If you don’t ask, you don’t get – This doesn’t really need an explanation but I have learned to be a bit more forward this year. I’ve always hated asking for things and I still do but I am learning to do it. And sometimes, amazing things happen.

3. Sometimes things come full circle – I never really believed in closure. In my experience, things just end, leaving jagged edges. But this year, I got the opportunity to talk to someone who had really hurt me and ask her why she did what she did. It was a stressful and upsetting experience in itself but I am glad it happened. I had already let go of what happened but I appreciate the full stop on the whole thing.

4. Remember to tell your friends you really love them – A lot has happened in the last year, a lot of emotional ups and downs, and my friends have always been there for me. I’m so, so grateful for that.

5. You can let go of something without forgiving the perpetrator – I’ve always struggled with the idea of forgiveness because it just feels like I’m saying that whatever they did is okay when it isn’t. But I’ve learnt this year that you don’t have to forgive to let go. You can just leave it where it is and move on. I don’t know how I did it but it’s nice to know that it’s possible.

6. Procrastination reinforces procrastination – I learned in therapy that every time I put something off, I was making that habit stronger and therefore making it harder for myself. I learned that, even if I only did five minutes on whatever I was avoiding, I was breaking that pattern and that really helped with my motivation, regardless of the task. Plus, that was five minutes more than I would’ve done otherwise.

7. Crying in public is not that big of a deal – I have now cried in public so many times that I just don’t care. It doesn’t matter. There are more important things to worry about.

8. Having an item of clothing that makes you feel like you can conquer the world is really worth having – A couple of months ago I bought a pair of boots that kind of changed my life. It sounds silly but when I wear them, I feel like a superhero. I stand up straighter, I carry my body differently, and I feel better about myself. I wish I’d found them sooner.

9. Trust your feelings but also give them time to settle – I can tell if something is right or not because of how it feels. But having said that, I feel things so strongly that sometimes I need to sit with them for a bit, especially if whatever has caused those emotions was a shock. It’s like flood waters going down: it’s all about survival when they’re high but once they recede, I can figure out what the new normal is.

10. Find something that makes you feel like you’re making a difference – I’ve started volunteering for Autism research projects which has not only been pretty fun (I got to see my own brain waves!) but has helped me process my diagnosis of ASD. I still struggle with it and struggle with what it means for my life but being able to use it in a positive way has improved that.

Oh, and you don’t play ‘22’ by Taylor Swift as much as you think you will.