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.

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.

Behind The Scars

A little while ago, I discovered Sophie Mayanne’s Behind The Scars photography project. I was scrolling through Instagram, probably procrastinating, when I saw a photo of a young woman unashamedly showing off her scars. I was intrigued by the story behind that post – while I’ve never been actively told to hide my own scars, it often feels like I’m expected to cover them up. This is particularly true of self harm scars, I think. As I said, I’ve never had someone specifically tell me to hide them but I still feel that there is an expectation that I should, either because I should be ashamed of them or because they might upset people. I protest this and so does Behind The Scars. This ever-growing collection of photos allows people to show their scars and tell the stories behind them. I don’t think I can describe it better than Sophie herself does: “Behind The Scars is a celebration of beauty, of flaws, of battles won and obstacles overcome. It is about survival, living beyond that and capturing the memories. It is a truly honest depiction of how our history, shown through these scars, does not define us but compels us.”

I was instantly a fan and applied to take part. It took a bit of planning and rearranging but come the day of the shoot, I arrived with only a little anxiety. I’ve had photos taken before, for my music projects, but they’ve always been taken by people I already know. So I was a bit nervous about that. I had also been nervous about my difficulty with eye contact (thank you for that, ASD) but Sophie was very reassuring and put that fear to bed very quickly.

The shoot itself was a very positive experience and made much easier by the presence of a little dog, Carla. Animals always put me at ease (to the point where both my cat and my dog frequently accompany me to therapy sessions) so that was a lovely surprise and did make me feel less anxious. Anyway. I had expected to feel very self-conscious but I didn’t. In fact, I felt strangely in control and comfortable in my body and that is something I’m really grateful for, grateful to this project for. And even though I often get very anxious about not knowing how to do something, I didn’t feel that as strongly as I sometimes do: Sophie was great, telling me where to stand and what she wanted me to do. I never felt judged and if a particular pose felt unnatural, we were on to the next one straight away. And suddenly we were done.

The other part of the project involves writing a little bit about your scars or your experience of having scars. I thought a lot about what I wanted to say and eventually, I came up with this:

“I’ve struggled with self harm on and off for about eight years but it’s gotten worse as my mental health has worsened. The compulsion, for me, is two fold. Because of my Autism, I feel emotions really strongly and when it gets completely overwhelming, the only thing that helps is self harming, like all the emotions can escape. It’s like my version of a pressure valve. I also do it when something very upsetting happens, like I’m trying to represent that distress in a tangible way and show that it’s changed me. I think a lot of people don’t understand it and almost don’t want to because it’s a hard thing to think about but I think the only way to help someone who is self harming is to try and understand it. I didn’t talk about it for a long time because I didn’t have the words but then I realised how much it would’ve meant to my younger self to know that other people were struggling with the same things. So it’s time to find the words.”

My lasting impression of Behind the Scars, and of Sophie, is sincerity, and personally, I can’t give it higher praise than that. It’s been a couple of weeks now since the shoot and I love the photos. They look like me. I know that sounds odd, but how many photos have you seen of yourself that just don’t look like you? But these do. These photos look like me.

“If these images help us to think differently about scarring, and for those that “wear” these scars, to look differently at not only the imperfections, but the individuality these marks might engender, then for me, I would deem the project a success.” – Sophie Mayanne

A massive thank you to Sophie for taking these photos and for the Behind the Scars project as a whole. You can see more of the photos from the project here and here and, if you’d like to help her get Behind the Scars to New York, you can find the Kickstarter here.

Farewell Phenelzine

It’s time for a change.

I’ve been taking Phenelzine, also known as Nardil, for almost three years now and while it’s been a great help to me, I need to try something else. The last few months have been very difficult and to cut a long story short, I’ve been diagnosed (for the second time) with Clinical Depression. I’ve been finding it really hard to take my medication, knowing the effects it will have on me. It might sound strange but, when I take the Phenelzine, my mood lifts and feeling the way I do at the moment, I’m really struggling with that. I find it really hard to try and feel ‘okay’ when everything is ‘not okay’. To me, this makes complete sense but I can also recognise that I’m waiting to feel better while avoiding things that actually might help.

I think my problem with Phenelzine is how familiar I am with how it affects me. Having taken it for so long, I know exactly how it changes my mood. That used to be a good thing but now… Now, the ‘happiness’ it makes me feel just feels fake because I know it’s caused by the Phenelzine. I think it’s important to point out here that, objectively, I know that there is no difference between ‘real’ happiness and happiness caused by medication, and that I have always been a real advocate for taking medication (if you need it and it’s recommended). That belief hasn’t changed. But my familiarity with this medication is now making it difficult for me to take it so I need a new approach. It’s time to try a different one. Hopefully not knowing whether it’s the medication affecting my mood or the world around me will make it easier to take and therefore help myself feel better.

So I thought I’d do a little review of Phenelzine as a goodbye.

I started taking Phenelzine in the summer of 2014, after meeting my current psychiatrist. I’d taken various medications before (I’ll write about those at some point), all of which I’d had bad experiences with. So my Psychiatrist suggested Phenelzine, a drug not commonly used (in the UK at least) because of the dietary restrictions but one used when the other options haven’t worked. I’d never tried an MAOI (a monoamine oxidase inhibitor, one type of antidepressant) so I was optimistic that I would react differently than I had to SSRIs (selective serotonin reuptake inhibitors, another type of antidepressant). And I really did.

Almost straight away, I felt completely different. I had previously been almost unable to get out of bed, let alone do anything else, and suddenly I had more energy than I knew what to do with. My thoughts were like fireworks going off one after another after another after another. It’s the closest to mania I’ve ever experienced and my family were genuinely worried about me. I could barely sit still and I couldn’t shut up. I’m not kidding, I couldn’t stop talking and that was pretty embarrassing as I was just starting university. It was a bit scary but at the same time, I was absolutely ecstatic to be feeling so much better.

It took a bit of messing around with the dose (with my Psychiatrist’s supervision) but that did calm down. After a couple of months, I felt a bit more normal: I had more energy, I could concentrate and complete tasks, and my anxiety wasn’t as overwhelming as it had been. On a lower dose, I wasn’t so manic but I could still function a lot better than I could before. My almost perfect attendance in my first semester at uni is a testament to how much it helped.

Since then, with the exception of the last few months, it’s been a massive help to me. I’ve managed to complete my degree and graduate with a First, while commuting up and down to London. I mean, it was freaking exhausting but it would have been impossible without the Phenelzine. As I said, before I started taking it, I could barely get out of bed. The exhaustion that I experience with Depression is awful and I didn’t have the energy to walk my dog around the block. So Phenelzine was a godsend.

Side effects wise, there was only one that I struggled with (although I was initially a bit light headed and nauseous but that passed pretty quickly). My main battle was with the insomnia the Phenelzine caused. It’s has an alerting affect so it’s not that surprising that I had trouble sleeping. I struggled to get to sleep and when I finally did, I never slept more than four hours a night. It was exhausting. On multiple occasions, I fell asleep on the sofas at uni during my breaks and I’m pretty sure I fell asleep during a lesson once or twice: I have a very vivid memory of ‘blinking’ and finding the white board covered in writing…

This has been an ongoing difficulty. I ended up going back to the psychiatrist and left with a prescription for Quetiapine. I still have to take it every night to get to sleep and while I’m definitely grateful for that sleep, it also has it’s own downsides. It’s incredibly difficult to wake up; it feels like my eyes are glued shut, like I’m swimming through deep, dark water with no idea where the surface is and it can take hours to shake off the drowsiness. And it’s scary to feel like you will not sleep without it. I’m hopeful that, when I stop taking the Phenelzine, the insomnia will disappear and so I can stop taking the Quetiapine. That’s both exciting and scary. I haven’t slept unaided in almost three years; I’m going to have to learn how to do that again.

It’s going to take a little while to wean myself off Phenelzine and I have no idea how the new medication will affect me. So the next few weeks are going to be interesting.

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Introductions + A Brief History

This post has been hard to write. I’ve been writing various pieces to post for several months now but this is the one I keep avoiding. As much as I love writing, writing about myself – introducing myself with only a select number of words – is something I’ve always found difficult. Usually I find that words open everything up and make the world bigger but sometimes I think people are the exception to that. How do you fit something as big and intangible as a human being into something as small as a series of words? It’s kind of like when you take a photo of someone and even though it is them, it doesn’t look like them. But this is something I’ve wanted to do for a long time, so I’m going to try.

My name is Lauren Alex Hooper and I’m twenty-two years old. I’ve just finished my songwriting degree in London and am working towards my first release as a singersongwriter. Songwriting is my favourite thing in the world and the only time I feel truly calm is when I’ve finished a song. That’s one half of my life. The other half of my life is my struggle with my mental health. Of course, this does often overwhelm the other half. It often overwhelms everything. At this point in time, I have been diagnosed with Depression, Anxiety, Social Anxiety, Obsessive Compulsive Disorder, Borderline Personality Disorder, and Autism Spectrum Disorder. These are still fairly recent (two years in the case of the ASD) but I’ve been living with the symptoms of them for a very long time. I’ve tried a lot of things to help with said symptoms. Some have helped, some haven’t. Currently I’m taking medication for the anxiety and going to Dialectical Behaviour Therapy, the best combination I’ve found so far. I hope to talk about all of this in more detail in future posts. If I start to write about it all now, we’ll be at ten thousand words in no time and while I don’t know much about blogging, I’m pretty sure that that’s not the way to start…

I’ve been writing about my experiences with mental illness for a long time but it’s only ever been for me. It’s only ever been a method of coping. But I can’t help thinking about how much it would’ve helped me to know other people felt the same way, had had similar experiences. For such a long time, I couldn’t understand why everyone functioned so much better than me, why I seemed to struggle so much more than everyone else and it wasn’t until I was sixteen that I heard someone talk about experiences that matched mine (it was Stephen Fry – but that’s another story). And that changed everything. I finally felt able to talk to my Mum because I had some context for what I was feeling and ever since that moment, we’ve been looking for answers and support. So I started to think about putting some of this writing (and there’s quite a bit of it) out into the world. Maybe it will help you, maybe it will help me. Here begins a new adventure.