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.

Eye Contact

A while back, I found a really good article on The Mighty about Autism and eye contact. As someone with Autism, this is something I really struggle with and something that makes socialising very stressful. People mistake it for rudeness when it’s often a coping strategy, a way to make the situation more manageable. It’s something that seems effortless for everyone else while I feel like I didn’t get the rulebook.

For me, eye contact is a multi-faceted issue.

The simplest part of it is that I simply don’t know which eye to look at. Especially when I’m standing close to someone, I don’t know where I’m supposed to look. That makes me very self-conscious and distracts me from what the other person is saying.

I also feel like I’m really on the spot, that I have to answer immediately if I’m making eye contact. I get very anxious in social situations because I feel like I can’t process quickly enough to keep up with the conversation so looking away gives me time to react and think and then respond.

Then there’s the feeling of it being too confrontational. I find confrontation very, very stressful because of feeling like I can’t process what’s happening fast enough. And that’s without all the emotions associated with such a situation, another thing that makes processing difficult. So anything that feels remotely confrontational is something I shy away from.

The biggest part of it is that it feels so, so personal. When I’m looking into someone’s eyes, I feel like they can see what I’m thinking and feeling and that’s terrifying. I feel so exposed and so vulnerable. It makes me feel panicked and so it just feels safer not to make eye contact.

The act of looking someone in the eye takes up a lot of my energy and concentration. It’s exhausting and overwhelming. I can’t think and so I can’t engage in the conversation. Just because I’m not looking at you, doesn’t mean I’m not paying attention. I am. In fact, I’m more focussed.

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‘What It Feels Like To Die’ by Claire Wineland

I found this video a little while ago and I’ve been thinking about it ever since. Claire Wineland talks about her experience with death in an incredibly thoughtful and insightful way. Death is a subject that I’ve always found really hard to talk about (even think about, to be honest) so I wasn’t sure what to expect when I clicked on the video, or even why I clicked on it. But I’m so glad I did. Claire is very eloquent and I was very inspired by her honesty and sincerity. This video hasn’t solved my anxiety but it feels a little less blinding. I guess it’s validated my fear, made me feel like that’s okay. And I think some of her sense of wonder has rubbed off on me a bit. It’s really worth watching.

Some quotes from the video:

“What I am opposed to is the notion that you can do death properly.”

“You can’t just let go. Because the whole point is that, when you’re dying, you should want to be alive. Because you’re losing every single possibility that was ever in front of you. You’re losing the person you could’ve become, the things you could’ve done, the things you could’ve made with you life, you’re losing that. And no matter how spiritually enlightened you are, or how many times you’ve thought about death and think you’re okay with it, you will grieve that when you’re dying. You will grieve the life that you could’ve lived otherwise and there’s no way to get around that.”

“The whole point of being alive is that you ARE alive and that you can make something with this.”

“We’re literally the manifestation of some kind of underlying brilliance to how everything works.”

“I don’t think that people realise that you’re not supposed to go peacefully.”

“The truth is the whole point of dying is to be scared, because that means your life meant something to you. You should fear dying. You should be terrified of it… Because life does mean something.”

No, I Can’t Stop Pulling My Hair Out

I first started pulling out my hair in August 2014 and looking back at everything that happened that summer, it’s probably not surprising that I developed a compulsive behaviour. I was already struggling with my mental health and then, in the space of a few weeks, an important relationship fell apart and I had to have my cat (who I’d had all my life) put to sleep very suddenly. And I was just about to start university. I was overwhelmed by my anxiety and depression and in the lowest place I’d ever been. I was probably desperate to regain some control and when something started affecting the texture of my hair (my money is on the new medication, Phenelzine, which I’d just started taking), my inner perfectionist went into overdrive, tearing out the hair that felt different. At first I was fixing the problem – getting rid of the hair that felt different to the rest – but, of course, it grew back, creating a whole new problem. Then I was tearing out the regrowth, as well as the rougher stands, and the whole thing snowballed. Very quickly it reached a point where I felt like I physically couldn’t stop pulling, as much as I wanted to.

At that point in time, I didn’t know what Trichotillomania was and I’m still not entirely sure how I came across it but for those of you unfamiliar with it, I’ll give you a little summary. Trichotillomania is a condition where the person feels compelled to pull their hair out (whether it’s from their head or any other part of their body) and is unable to stop themselves from doing so. Although there are different theories (including mental illness, self harm, and addiction), there is still no known cause and there has been very little research into treating it. While checking my facts to write this, I came across a description on the NHS website which, for me, is very accurate to what it feels like: “They will experience an intense urge to pull their hair out and growing tension until they do. After pulling out hair, they’ll feel a sense of relief.” It feels like there’s electricity under my skin and it builds and builds and builds until I can’t bear it anymore; the only way to stop it is to pull out my hair. Then I can breathe again.

I tried to stop but I always ended up pulling again. It honestly felt like it would’ve been easier to break my own fingers than to stop pulling out my hair. It was only the discovery of a bald spot that shocked me into stopping. I don’t know whether it was vanity or anxiety about how out of control it had become but somehow that gave me renewed focus and motivation. I tried everything I could think of: sheer willpower, sitting on my hands, wearing a hat 24/7 (which, bizarrely, has become part of my image as a singersongwriter), fidget toys, jewelry that I could fiddle with. Ultimately I think it was a combination of these that helped me stop pulling.

I managed a whole year. The first few days were awful. The feeling of electricity under my skin magnified, so strong that I couldn’t concentrate, and I’m not sure when that started to fade. But it did. And slowly my hair grew back. But the urge never went away and just passed the year mark, I started pulling again. The relief was huge. And now, over a year later, I’m still struggling with it.

What I think many people don’t understand about this condition is that it’s not voluntary. I’ve had so many people tell me to ‘just stop pulling’ and that’s really upsetting to hear because I don’t want to pull out my hair. I don’t want to sit, surrounded by strands of my own hair. I don’t want this. I can feel myself doing it and I can’t stop. Sometimes I can stop that action but as the tension gets worse, I end up pulling again – it feels like an endless cycle of trying to stop but knowing that I’ll inevitably start again. It’s so hard. And if the bald patches, uneven length, and permanent damage to my hair weren’t enough, that’s only part of it. There’s an emotional impact; it’s not just ‘pulling out hair’. There’s shame, embarrassment, guilt, and frustration. I hate that I can’t stop, that I can’t seem to control my own body. (It’s also worth pointing out that I also struggle with physical pain in my arm and shoulder from the repetitive motion.)

But I’m not giving up. I’m not sure what I’m going to do next but I’ll find something new to try, a different angle to tackle it from. I won’t give up. I can’t, because I don’t want to live like this.

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.

Coming Off Phenelzine

Just over a month ago, I decided to change medications. It was a long time coming but I eventually managed to speak to my psychiatrist and we came up with a plan. The first step was weaning myself off the Phenelzine and the second was going drug free for at least a couple of weeks to make sure it was out of my system before trying the new medication. I kept notes to track any patterns in mood and since I couldn’t find many accounts of coming off Phenelzine when I searched online, I thought I’d write about my experience. As always, this is only my experience, which will be specific to the dosage I took and the duration for which I took it.

Week 1

I was already on half of the prescribed dose so, to start the weaning off process, I went down to a quarter of the prescribed dose. Very quickly I felt very irritable, snapping at people over things that normally wouldn’t bother me. I was also overly emotional and ended up in tears a lot, sometimes multiple times a day.

Week 2

In the second week, I stopped taking the Phenelzine altogether. My anxiety skyrocketed and remained really high, higher than it’s been in a long time. My mood was also very fragile, so even small things made me very upset and depressed.

Week 3

In week three (the second week without any medication), I felt completely exhausted; some days, I was so tired that I could barely get out of bed. I was very depressed and felt blank, empty, completely disconnected. It was like everything just bounced off me. I’ve gone through periods of feeling like this before so, even though it isn’t pleasant, it wasn’t unfamiliar.

Week 4

Although I’d already been off the Phenelzine for two weeks, I decided to wait a little bit longer before trying the new drug. It was two weeks minimum and I’ve always been very sensitive to medication so I wanted to make sure it was completely out of my system before starting the next one. I didn’t want any chance of an overlap distorting that experience; I didn’t want to risk writing off something that could help over something as small as a few more days. For that last week, I was just really tired. My mood seemed to stabilise a bit and everything just felt less turbulent. It was that settling of my mood that made it easier to think more clearly and I felt ready to try the new medication.

It’s worth pointing out that my mood has been consistently low throughout all of this. I’ve had a couple of days where I felt a little bit lighter but on the whole, I’ve been feeling very depressed, hence the change in medications.

And now I’m onto the next stage: trying the new medication. I’m nervous but I’m really ready not to feel like this anymore.

Keeping A Personal Library

From a very young age, I’ve had a fear of forgetting things. Not little things, like what I need to take with me when I leave the house, or the door code at university, but the details of my life: how I survived the traumatic breakup of a friendship, how I felt at the concert of my favourite singer, what I was thinking when I started going to therapy. The little details of the big events, the things that have made me who I am.

To that end, I kept diaries. I’ve done so my whole life but the catalyst for my compulsive writing occurred just before I turned nineteen, when I was forced to take a gap year because my anxiety, depression, and social anxiety had become so bad that I just couldn’t cope with the course I’d intended to do. Suddenly I had a lot of empty time and a lot of chaotic thoughts to fill it. So I started filling notebooks, with stories, moments, quotes, and memories that I was terrified of forgetting. I would write non-stop for days, until either I fell asleep over the pages, or my hand cramped up so badly that I just couldn’t keep going.

While it was clearly an odd behaviour, no one, not even myself, thought much about it. I’d always been a writer, having written my first ‘book’ before the age of six. I’d gone on to write a twenty thousand word story at twelve, and since then, I’ve experimented with poetry, essay writing, blogging, and pretty much any other kind of writing you can think of. Now, at the age of twenty-three, songwriting is my true love, but my passion has always been for words: to express, to describe, to explain. So writing a lot wasn’t weird.

But as my anxiety in particular got worse, I tried to write even more. I’d write down the most minute details: what I ate at every meal, the plot intricacies of the TV show I was watching, the lyrics of each new song I listened to. I was absolutely terrified of forgetting each detail that had contributed to the person I was that I felt compelled to write everything down, so that I didn’t lose one single puzzle piece. It was taking up all of my time, literally, and that was without anything particularly significant happening.

When significant things did happen – the disintegration of an important relationship, the death of my much-loved cat, the introduction of a new medication – the writing became a serious problem. Over that period of approximately a week, I wrote about ninety pages, and over twenty thousand words. It’s true that I was working all the emotion out, figuring out how I felt – for me, writing is the best way of processing stuff since I can’t write as fast as I think, giving me the time to really think everything through as I write it down – but it was taking over my life. Still, I didn’t think anything of it. It was what I had to do to get through some really hard stuff. And even if I’d wanted to, I don’t think I could’ve stopped.

In September 2014, I started university. Suddenly things were happening. A lot of things. I was commuting to London, meeting literally hundreds of new people, and taking a load of new classes on subjects I’d never studied before. I also had a huge amount of homework; I felt like I was working all the time. So trying to write about everything that was happening became an impossible task. But not doing it caused me suffocating anxiety. It was a catch-22, and it took me months to catch up with myself. In January 2015, this was diagnosed as Obsessive Compulsive Disorder.

In the last four years, I’ve written over a million words. Over time, with some good medication, a fantastic therapist, and a lot of hard work, I’ve become better at managing the anxiety and I’ve become better at managing the compulsion. I no longer need to write down what I eat for every meal, what I do every minute of every day, although I still struggle against including every song lyric I love (I’m a songwriter – it’s research, right?!). But having said that, I still need to write a lot about how I’m feeling and how certain events make me feel. It really helps my frantic brain slow down and understand everything that’s happening to me. Of course, there are still certain things that cause my writing to go into overdrive. For example, I wrote more than twenty pages after a recent ninety-minute therapy session.

I have a complicated relationship with my writing. Writing is something I enjoy, and keeping a diary is a positive experience for me. But it’s the compulsion to do it, the unbearable anxiety when I don’t, the constant panic that I’ll forget things… These things make my life miserable. The longer I go without writing, the harder it feels to breathe. Having a complete history of your life, being able to go back to an important moment and remember how you felt… it sounds nice, right? Well, it would be if I had any choice in the matter.