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.

13 Things That Don’t Make My Depression Worse

I’ve been struggling with depression on and off for about five years now and that’s added up to a lot of bad days. Over that time, I’ve tried a lot of things and talked to a lot of people. And the best advice I’ve ever been given is ‘don’t make it worse’. Well, step number one is ‘don’t make it worse’, step number two is ‘try to make it better’ and that always rang true with me. In my opinion, the most important thing about coping during periods of depression is getting through it.

You can worry about making things better when you’re feeling okay but when you’re feeling awful, that’s too big an ask. These things on this list aren’t life changing. They’re not going to banish the depression or quiet the anxiety. But they have helped me to feel better, even if it’s just the smallest amount. And that’s where you have to start. So I thought I’d list them here. Maybe they’ll help some of you too.

1. Journaling – I’m a huge advocate of writing stuff down, for two reasons. Firstly, I think it really helps with the processing of emotions. A lot of the time, I feel like my thoughts move very quickly and to write them out, I have to really slow down. That allows me to make different connections, explore the depth of the emotion, and really think things through. I find that so, so helpful. And the second reason is that it allows me to let go of everything that’s happening to me. I’ve been keeping diaries for a long time and this is something that has really helped me. All of these big emotions make my head feel very full and it can feel hard to breathe but when I write it all out, it’s like I can let it all go. I compare it to backing up my hard drive: I know it’s safe and I don’t have to actively hold onto it or worry about forgetting things, something that often feels like it takes up a lot of energy.

2. Looking at the sky – I’m serious. There’s a little park across the street from my house and recently, I’ve found myself heading over there in the early evening (when it’s empty and quiet) and taking a moment to lie in the grass and look at the sky. There’s something about it that really calms me. I can feel my ribcage opening up and it gets easier to breathe. It kind of feels like, with the sky above me, there’s finally enough space for my emotions to leave my body. I don’t know if this works for anyone else but humour me. Try it and see how you feel.

3. Playing with or stroking an animal – There’s something about animals that can be incredibly calming. They’re so mindful, so completely present in what they’re doing. Spending time with my dog or my cat is something that’s really helped me over the last few years. Focussing on them, for me at least, makes everything fade into the background for a little while.

4. Washing your face – Simple but true. Sometimes, washing my face just feels like a fresh start.

5. Buy something (cheap) online – I say cheap because I know money is a cause of stress for a lot of us, but when you’re having a bad day, having something to look forward to is important. And sometimes there’s nothing in the diary so you have to create it yourself, even if it’s something simple, like a pretty notebook. Knowing that something nice is going to arrive in a couple of days can help you keep going.

6. Doing something that takes all of your concentration – If you’re feeling up to it, doing something that takes great concentration is really good because it prevents you from thinking too much and ending up in a spiral of negative thoughts. My preferences are playing the piano or doing origami.

7. Doing something you don’t feel pressured to be good at – A while ago, a friend suggested trying something like painting because it was something I’d never really done and therefore it didn’t matter if I wasn’t any good at it. It was a good idea in theory but in practice, all I could focus on was how I couldn’t make it look how I wanted it to look. To me, it was bad. So that just made me feel worse. But when I picked up poetry, I discovered I didn’t mind what the outcome was. I just did it because I enjoyed it and I think that’s because it was linked to something I was already skilled at. I’ve been writing in some form or another for years so while this form of it was new, the basic skills weren’t. It was already something I was comfortable with. So, if you’ve had the same problem, perhaps try something similar to a skill you already have: a different art form, a different sport, even a different type of puzzle. I’ve found that doing something purely for enjoyment can help, giving you a sense of accomplishment at a time when you may not feel very accomplished.

8. Having fresh flowers around – I don’t know about the logic of this one but there’s something about having fresh flowers in my room that just gives me a little pick-me-up.

9. Watching a movie or TV show – Sometimes you just need a break from your own life and watching (or rewatching!) a TV show or movie and getting really involved with characters can do just that.

10. Take a break from responsibilities – This is obviously not a long-term strategy but giving yourself a period of time where you aren’t required to do anything can recharge you. For a little bit, you can avoid things that make you feel invalidated and not feel guilty about the things you should be doing. That takes up a lot of energy and having a break from that just allows you to recover some energy so that you feel more capable when it’s time to start again.

11. Organise something – Putting things in their proper place can help give you a sense of control in a time you where everything may feel completely out of your control. I actually find this quite helpful when I have to make big decisions. Jumping straight to the big things can send me into a panic so I kind of warm up by organising my computer desktop, putting everything in the correct files.

12. Going to concerts – This is obviously a harder one to orchestrate because you can’t just conjure up a concert when you’re feeling depressed (although looking forward to one can be helpful too). Concerts can be difficult (especially if you struggle with anxiety as well as depression, like me) but in my experience, there’s something about live music and that group emotion that can make you feel very alive. And you’re completely focussed on that moment in time. Emotions feel more vibrant, after feeling very faded by depression and they stay with you, allowing you to relive them afterwards. There’s something very special about going to concerts, especially when it’s an artist or band that mean a lot to you, and I’ve found those experiences can really lift me out of my depression, even if it’s only for a little while.

13. Changing your bed sheets – I don’t know about you, but there’s something about sleeping on clean sheets that just makes me feel better. If I’m in a bad place, I need someone to help me do it but it always improves my mood.

So that’s my list of things that don’t make my depression worse. Hopefully this has helped or given you some ideas for when you’re feeling really low. And if you have any suggestions, leave a comment below!

Finding Home and Finding Hope

Last night I got to see Cecilia Knapp perform her one woman show, Finding Home, for the second time. It’s a show that discusses some of the really big stuff, like family, growing up, loss, suicide, and hope, and again, I was completely blown away. She’s an incredible writer, an incredible poet. It’s a fantastic show and if you’re able to see it, you really should.

This post could easily be a list of reasons why I love Cecilia, and her writing, and I’d quite happily write that but that wasn’t why I wanted to write this post. I wanted to write this post because she’s doing something really important. She advocates using writing, and creativity in general, to share stories and to help us cope with the things that happen to us, and this is something I’ve always really thought too. I think it can change everything; it certainly has for me. Writing has given me a way to make intangible things tangible and process things that had always felt too big to think about. I can’t say it better than Cecilia does here, in her TED Talk:

And on the other side of that, I also want to highlight the power of art and words, and the effect they can have. I’ve been in a pretty bad place for the last few months and I’ve really struggled with feeling hopeless. But listening to those words, it kind of felt like all of the colour had rushed back into my life, all of the feeling back into my body. I felt alive again. And that was amazing.

Of course, one experience can’t alleviate depression but what is change but a series of experiences? And regardless of whether or not this feeling lasts, it won’t be any less special if it doesn’t. I’ll keep the memory safe and replay it whenever I need to remind myself of that moment, that feeling. Given this experience, I’m even prouder that this blog’s title was inspired by this show.

You can find out more about Cecilia and her work here.

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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