Living with Autism During a Pandemic

I know that everyone is talking about this right now and I’d rather not because it makes me so anxious but there are a couple of things I want to say and then hopefully this blog can go back to being a Coronavirus free zone. I know it’s scary for a lot of people and there’s a lot of information and advice being thrown in your face so I just want to document my experience so far and write about the things that are helping me to minimise my anxiety.

I think the first thing to say is that I hate change, as I know many autistic people do. I especially hate sudden change because it gives me no time to process what’s going on, which causes me a lot of anxiety. It also messes with my emotions, leaving me feeling unsettled and sick and empty and twisted up. I can’t really explain it properly; it’s such a specific feeling.

The first big thing to happen was Tin Pan South, the festival we were going to Nashville for, was cancelled, which meant we had to decide whether or not still to go as it could be more expensive to cancel our flights. But as the news from other countries got more serious, we decided that we didn’t want to go and get stuck there so we had to make the difficult decision to cancel. I was gutted. I am gutted (we were supposed to be flying out today). I was so looking forward to the trip and to the festival that, not only was the change stressful, it was very distressing too. And then, of course, there was the stress of getting the money back. With the travel ban, we have since managed to get everything refunded or in credit but it was incredibly stressful, in addition to all the stress coming from the news about the virus. I have family who would be in serious danger if they caught it so, even though I’m in much less danger, I was  terrified of unknowingly transmitting the virus to them. I still am so we’ve all been self isolating apart from essential trips like picking up extra medication and so on.

And then, suddenly, everything started happening. All of the concerts I was going to got cancelled, which isn’t a big deal in the grand scheme of things but they are the bright spots in my life that get me through when I’m in a bad place, which I arguably am right now. So that’s been difficult, especially the suddenness, as I mentioned earlier. Then one of my best friends was suddenly on a plane home, which was very upsetting (although, of course, I understand and support her in wanting to be with her family); one minute we were making plans for the next day and the next she was messaging me from the plane. That change has been hard and I’ve cried a lot about it. Plus, just as I’ve  started to get into the groove of going to therapy again, we’re having to switch to video sessions, which I thought I was fine with but turns out I’m struggling with. And then there’s just all the not knowing what’s going to happen or how long this is going to last. So there’s been a lot of change really fast.

I actually feel quite traumatised by all the changes. Stuff like this always messes with my head and with my emotions and I end up feeling like it’s causing brain damage, like parts of my brain are being permanently warped and will never recover.

The week after all of these changes happened (most of them happened over the weekend and into the Monday), I wasn’t going to go to uni. Many of my friends and classmates weren’t going, having gone back to their families abroad and within the UK, and I just couldn’t bear to be there and see it without them all with so little time to adjust. I just felt so unsettled and restless and anxious. I don’t think I’d’ve been able to concentrate if I’d been there.

My course discussed it through our WhatsApp group (we’re a small course) and ended up emailing our programme leaders to say that we didn’t feel safe and that we didn’t feel it was responsible for us all to be there, to travel in on public transport, and so on. Very few people went to the classes and I think it was later that day that it was announced that the course would be moving to online classes. I’m yet to see how smoothly that goes. They’re not moving our assessment deadlines, which many people are very upset about, something I definitely understand. There are a lot of reasons to feel an extension is necessary. My mind changes from hour to hour; I don’t know whether I’d want an extension. Yes, there’s massive anxiety affecting my life that makes it hard to work but at the same time, we don’t know how long it’s going to go on for and I’d rather just get the assessment over, if that makes sense. I don’t know. I don’t know what I want.

Me and my Mum – my household – are self isolating, apart from necessary trips out (getting the necessary supplies to stay in, getting supplies for the cats, getting what we need to allow us to work from home, and so on – making it possible to self isolate for as long as we need to). It’s weird: I usually spend days at a time inside but suddenly I’m really claustrophobic and restless and anxious and it’s been less than a week. I don’t know where that’s coming from. Maybe I’m just so full of anxiety that everything is making me anxious.

So, having said that, I wanted to list for you a few of the things I’m doing to try and minimise my anxiety:

  • Keep a routine – I’m not talking about being really ambitious. If you’re like me and you struggle with Autism and/or mental health problems, diving into a really ambitious schedule just means I end up crashing and burning and then feeling terrible. So when I say ‘keep a routine,’ I’m talking about the little things. I’m talking about getting up at a reasonable time, showering, remembering to eat, getting fresh air (even if it’s only opening the windows and getting out into the garden, if you have one)… Things like that. Yes, it’s motivating to be productive so if that feels possible, go for it, but it’s also important to be gentle with ourselves during a time of such great stress.
  • Keep to a regular sleep schedule – With nowhere to go (if you’re self isolating), it’s easy to just stay in bed, get up late, and then end up going to sleep at four in the morning. It’s really, really easy. But I’m trying to go to bed at my normal time and get up early, like I do everyday. It’s much better for my mood than if I stay in bed for hours. A regular sleep schedule is actually proven to reduce stress, help you to avoid getting sick, help you think more clearly, and a multitude of other things, all useful at a time like this.
  • Stay on top of my medication – This is a fairly obvious one but if you take medication, make sure you’re stocked up and that you take it diligently. I take a regular antidepressant, a regular anti-anxiety, and then I have an anti-anxiety to take as needed. And, as you can imagine, I’m needing it a lot right now. So I’m constantly listening to my body so that I’m aware of when I need to take it as early as possible, so that I avoid the unnecessary anxiety. Of course, there’s huge anxiety going around but there’s also anxiety that we don’t need to feel and if we can avoid it, then I’m all for that.
  • Start and end the day with something calming – I’m dealing with a lot of anxiety (as we all are) so I find it helpful to start and end the day with something that relaxes me. For me, this is usually writing my diary because it empties some of the stuff out of my brain and helps me feel like I’m not trying to hold onto so much. It’s all safe, but I don’t have to actively hold it in my head. So letting some it go is like being able to breathe deeply again.
  • If the news is too much for you, ask someone in your support system to keep you up to date on the important announcements – My anxiety has always been triggered by the news and it’s even worse now so my Mum listens to it, filters out all the noise and fear and things I don’t need to know and gives me the important, relevant information. This has been so helpful since there’s been so much confusion and misinformation and fear mongering. If this isn’t possible for you, check your national news once a day and then try not to look at it again. Because there isn’t as much information as there is news time, there’s a lot of speculation and opinion and it doesn’t do any good to get sucked into that spiral if you’re already really struggling with anxiety.
  • If you have to work or study, try to do it in manageable chunks (which will be specific to you) – As I’ve already mentioned, I still have an assessment deadline. I still have an essay due. So, even though I’m really struggling to focus because of all the anxiety (which means it’s taking so much longer than it normally would), I’m trying to work on it everyday so that it doesn’t pile up and so I don’t end up overloaded and overwhelmed (it hasn’t helped that I’ve had multiple problems with my laptop in the last few weeks). It’s hard, especially since it’s now much more difficult to get help with it, but hopefully the slow and steady approach works.
  • Indulge in simple things that improve your mood – This is not a trick question. If there’s something simple that makes you feel better, let it make you feel better. Some of the things that boost my mood (even temporarily) are having the fairy lights on, burning my favourite candle, spending time with my cats, watching my favourite movies and TV shows… You’re allowed to feel good, to try and feel okay even in the face of this big, scary thing and if something really simple does the job, then go for it.

If there was ever a time for looking after yourself mentally (and obviously physically), it’s now. I hope some of these tips are helpful and let me know if there’s anything that you find helpful in stressful times such as these. As I said at the beginning, hopefully this blog can go back to being a Coronavirus free zone after this post because I know it’s triggering for a lot of people, myself included. But if I find any helpful resources for getting through this, I’ll definitely share them because I figure we could all use all the help we can get.

The First Semester of my Masters Degree

Now that I’ve finished my assessments, I thought it might be an interesting idea to sit down and write about my experience of the first semester of my Masters Degree. Because I’m doing it part time (mainly to protect my mental health), I’m only doing one module rather than two, which is what the full-timers do. The module I did was called ‘Creative Process’ and it was four hours of uni time, a two hour seminar where we talked about different areas of the creative process and then a two hour workshop where we played the songs we’d written based on the ideas and concepts we’d talked about the week before. It was a really interesting module and I wish my mental health had been better so that I could’ve focussed and enjoyed it more.

I feel really lucky when it came to my group and my tutor.

My group was only about nine people (when the other groups were much larger as far as I know) and they were all absolutely lovely. We were all really different, both musically and life experience wise (but I guess that’s what happens when you get to Masters level), which was really interesting when it came to writing and socialising and… just everything. It was a completely new experience and one that I’m really grateful for. Up until now, I’ve mostly been surrounded by people my own age with similar experiences.

Everyone was so, so good, all in their own way. They all had their own style (some had particularly beautiful musical signatures, some wrote from interesting perspectives with thoughtful lyrics, and so on) and it was so interesting and exciting to see how they developed over the semester. We were and I know will continue to be so supportive of each other’s music and development as songwriters. It always felt safe to bring in something I felt unsure or insecure about and the feedback was always constructive and because the person wanted you to get better; I never once felt like someone was being mean or looking down on me. It was such a supportive atmosphere and I’m so grateful because I think that was a huge part of what helped me to grow so much as a writer.

I made two really good friends in particular, both of whom I’m still in the same group with to my absolute delight. They’re truly beautiful souls. One of them, Luce Barka, wrote this amazing song during the semester and has said she’s happy for me to share it with you guys. I really, really recommend it…

I also had a fantastic tutor, Isobel. She’s a really cool, independent singersongwriter, which I think made her an especially good teacher because she’s very immersed in the industry we’re all trying to get into, in her own, distinctive way. She’s also dealt with serious health problems (which she has talked about publicly so I’m not breaking her confidence or anything) so I felt like she was a really good tutor, especially for me. She understood, or had a kind of understanding, of what I deal with. She was a really, really great tutor, in discussions and when giving and guiding feedback. But for me personally – and this is my blog after all – she was incredible when it came to helping me manage the course against all of my issues. When my anxiety was overwhelming, she helped me adjust the tasks to make them easier while still allowing me to do the task and learn the skills. I am massively appreciative of how accommodating and generous and kind she was, even before  she received the Student Support Agreement (the document with all my information and recommendations).

Anyway, she was amazing. I learned so much, obviously from the course but also from the way she delivered it and the feedback she gave me. I feel like I’ve grown so much as a writer and I feel like she’s a really big part of that. Plus, I’ve never had a teacher who was so understanding, who helped without hesitation, with just my word to guide her. I can’t properly express how much I appreciate that. It’s never happened to me before and it felt so wonderful to be treated as if it was something you just do, rather than being made to feel like a burden or an obstacle to be manoeuvred. So, as much as I learned (and I learned a lot), that is what I’m most grateful for and one of the things that I will always remember about this semester.

The first few weeks were really, really tough. After my massive meltdown in Victoria station, I was having meltdowns every day (as I wrote about here), which was having a big impact on my mental and emotional health, also leaving me physically exhausted. That significant meltdown was triggered by an email from the Disability Coordinator (who was also an Autism Specialist), suggesting a very last minute change of plan for our scheduled meeting which still leaves me bewildered. As an autistic person, sudden changes of plan are known to be highly problematic. That, plus my existing anxiety, caused a massive meltdown that took a very long time to recover from. And it left me feeling less than confident in her ability to support me even though we had had a positive first meeting and I had left feeling cautiously optimistic that this time it might be different. It then didn’t improve as actions promised at that meeting didn’t get done, leading to more meltdowns. So that was a real complication and painful part of the semester.

Having said all of that, I loved the classes. We learned about songcraft, collaborating, imposter syndrome, professional practice, perfectionism, and so much more. It was fascinating and fun and the briefs, while often stressful (with only a week to write the song), were interesting and challenging. I wrote some songs that I’m really proud of and I feel like my songwriting grew a lot because the briefs were challenging.

We watched this video in one of the classes and I thought it was really good so I thought I’d share it:

I loved it – loved getting better at songwriting – even the bits that pushed me and made me feel uncomfortable.

However, out of class was another matter. We were expected to do research that would later become the foundations of our assessment essay and presentation. Except whenever I asked, they wouldn’t tell me what the assessment entailed and just said it was ‘self directed learning’ so I didn’t know what I was actually researching, which caused me terrible anxiety. I created a reading list of books, articles, and interviews about creativity and songwriting but as hard as I tried to do the work, my OCD – my need to write everything down – battled against it. And usually won. So if I wasn’t writing, I was reading. I had no downtime. I was constantly anxious, like, end-of-the-world-anxious. And I felt like I was failing.

They explained the essay and presentation in the last couple of weeks but I still didn’t really understand. The language was complicated and vague and while I understood the general idea, the grading criteria was pretty ambiguous. I didn’t know what I had to do specifically to get good grades. I need clarity. It was incredibly stressful.

It took a couple of last minute meetings with my module leader to really understand what was expected of me but I was now facing a myriad of problems. The research I had been doing had little relevance to the subject I was writing about so I’d have to redo all of that, as well as actually write the essay and prepare the presentation. Plus we were in the final two weeks of the semester and the university would soon be closed for the Christmas holidays so I would have no way of contacting anyone for any support. I was wound so tight I felt like my spine might snap. I felt like I couldn’t breathe. I’m really grateful for those meetings but I just wish the assessment had been clearer earlier in the module so the research I was doing could’ve been more focussed. With all the problems associated with Autism, like chronic fatigue and chronic pain, time is something I have to be incredibly thoughtful about.

I worked every day of the entire holiday (apart from Christmas Day, which I spent with my family – something I don’t often get to do) but the assessments were always in my head so I felt like I couldn’t take a break or have any time to rest and recharge. I still didn’t feel sure that I was doing it right but still, I worked hard on it and gave it everything I had. I finished both the essay and the presentation with time to spare, allowing myself time to redraft and prepare, giving myself the best chance of doing well. I submitted the essay, despite big technical problems with the system, and I did my presentation to the best of my ability, despite finding presentations incredibly difficult. Now I just have to wait for the marks.

Now, having run through the whole semester (and having reflected a lot on the difficulties), I just wanted to share a couple of specific, positive experiences:

  • For one of the early seminars, we had a guest tutor, who works primarily as an expert in Personal Transformation, come and talk to us. Because we were such a small group, he was able to really talk to each of us about our lives and our creative struggles. Considering how little we knew each other at the time, it was amazing how open everyone was and I think it’s part of the reason we became so close and supportive as a group. It was a real bonding experience to hear all of these personal stories and I personally felt really honoured to be part of it, to have been trusted with those stories.
  • One week I brought in a song that I was really proud of. It had a repeated line in it – “it’ll get easier” – and everyone picked it up really quickly, singing along and harmonising. It was beautiful and emotional and it was one of the most special moments of the semester for me.
  • During my research, I found a quote by Paul Gardner that I’m endlessly inspired and intrigued and excited by: “A painting is never finished – it simply stops in interesting places.” There are so many things that could mean. What do you think it means? Or what does it mean to you about a particular thing in your life?

Overall, it was a very mixed bag. The good moments were great and made me feel amazing. I got a lot out of it. But I spent a lot – A LOT – of the semester in crippling anxiety and I had a lot of meltdowns. It was fucking hard. And the marks haven’t even come back yet. I’m terrified that I’ve done horribly. But I’m trying not to think about it. I’m just trying to get through this new semester. Which may be even more stressful than the last.

A Letter Under The Floorboards

Today is exactly a year since we moved house. That was a terrible day. It was stressful and upsetting and exhausting. I had a meltdown when we finally collapsed in the new house (surrounded by boxes and carefully balanced furniture) and neither me nor my Mum slept that night. It was all just too much.

It’s better now. I’m still adjusting, but then I had spent most of my life in that house so I didn’t expect a quick recovery. I’m getting there. My room almost feels like my room.

Since we moved out, we’ve actually learned quite a bit about the history of the house and the people who lived there. Our favourites are two women who lived and worked together their whole lives, the first head and deputy head of Varndean School. We even found pictures of them, which is really cool. We were all weirdly moved to learn these stories.

When we moved out, I wasn’t thinking about the history of the house and our part in it. I was just trying to figure out a way to say goodbye. So I wrote a letter and tucked it under the loose floorboard in my room. It was a letter to any and all future occupants, asking them to look after the house for us, for me. We’re part of the house’s history now and perhaps, one day, someone will find this letter and feel the same way about us as we feel about these two women. And since we live in a technological age and the first step of investigation is to google something, I thought I’d put this out into the internet. Maybe one day they’ll find me.

To whoever finds this,

This has been my bedroom, on and off, for about seventeen years. That’s most of my life. That’s a surreal thought, one that I’m trying not to obsess over. It took a long time to feel okay about moving and I’m scared that thinking too hard about all of it will be the wind that blows me back into that storm. I didn’t think I’d survive it the first time. I don’t want to leave but I don’t want leaving to be a life altering tragedy. I’m trying to remember that I don’t need this room to be me, even if it feels like that sometimes.

A lot has happened in this room, in this house. I grew up here, watched thunderstorms, brought friends over for dinner, celebrated birthdays and Christmases. I wrote stories and songs and my brother learned lines and turned the flickers of ideas into masterpieces. I said a last goodbye to my cat of fifteen years, learned that I could love another one, and then raised two litters of kittens with her. I taught my dog to sit, sneaked him onto the sofa when no one was home, and sang to him while emptying the dishwasher. I studied for GCSEs, A Levels, and my degree. I graduated with a first and I found out in this room. I had my heart broken. I struggled with my health and my mental health. I found out that my Dad had died.

 I worry that leaving this room, this house, means leaving all of those things behind and that I’ll lose myself because of that. It may not be rational but it’s how I feel. I hope that I’ve managed to box all of that up with my belongings but I guess I’ll see when I get to the new house. There’s a little voice in my head that says that the rooms feel empty because we’ve packed all the memories and emotions but I’m scared to believe it.

Maybe this is all too flowery and fluffy for you. That’s fine. A room can be just a room. A house can be just a house. But regardless of whether you see it as four walls or a time capsule, please take care of it for me. For us. We have loved it dearly and hope that you will do the same. Fill it with life (and extra radiators because, as you’ll soon find out, it’s practically impossible to keep it warm). I hope you will feel as safe here as I have.

Look after this place. I’m trusting that you will.

LAH

16/04/18

The Old New Year’s Resolutions

HAPPY NEW YEAR!! I hope you have all had a lovely, relaxing holiday period and that you feel hopeful about the year ahead. I’m feeling lighter than I have in a long time and for the first time in months, I’m actually excited about what’s coming next.

But, before we move on to the new year and all the new plans, I want to pause for a moment. This time last year, I set several resolutions – more like goals – for 2018. Now, 365 days later, I want to look back at them and look at how I did, whether I achieved them or not…

WRITE MORE SONGS – Technically, yes. I did write more songs. Not as many as I would’ve liked but more songs nonetheless. As I mentioned in my review of 2018, my depression seemed to completely suppress my creative brain so writing anything was a really struggle. But I’m cautiously optimistic about my songwriting in the near future.

RELEASE MUSIC – Yes, as I said in my halfway-through-the-year post, I have music out in the world (you can listen to my first single, ‘Invisible,’ here). It was a long, hard journey to that first milestone but we made it and I’m excited about what’s coming next.

FIND THE RIGHT MEDICATION – I found many wrong ones but, fingers crossed, I’m onto a good one. Right now, we just have to wait and see (my least favourite sentence in the world).

WORK ON BEING HEALTHIER – I feel really good about this one. Since August, I’ve been going to the gym and swimming for at least half an hour most days of the week and I’ve kept it up for six months. I’m so proud of myself and I love it so much. It helps me make sense of the world and it makes me feel really good. Food is still a daily struggle but I’m not restricting and I’m also not eating everything in sight. So that’s something.

BECOME MORE INDEPENDENT – I feel like I’m going backwards with this one. My depression has been all consuming and just as it started to let up, anxiety rushed in to fill the void. So I’m struggling here. I don’t know what else to say about this one.

READ MORE BOOKS – Yes! I definitely did that! My small, achievable goal was five books and I managed to read ten! So I’m very proud of my efforts in this department. Hopefully I can keep this up going forward.

IMPROVE MY MUSICAL SKILLS – This is another casualty of my depression. My lack of concentration and motivation has just made it impossible to do any consistent practice. Even when I tried my hardest, I couldn’t do it and then I’m really good at beating myself up over it. That’s another thing I need to work on. But as I’ve already said, I’m cautiously optimistic about things moving forward.

GO THROUGH MY POSSESSIONS – Well, I did that. We moved house and so I went through everything as I packed it. That was very overwhelming so I’m sure I missed stuff. I’m still creating a new order and finding things that I can throw out or give away but I made a huge dent in this resolution and I’m pleased with my effort.

So I guess it is now time to make some new resolutions. Watch this space…

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What Women With Autism Want You To Know

The other day, I was just browsing through YouTube (probably procrastinating something) when I came across this video.

“Autism is not a disease, it is a developmental disability. It’s about living our best possible lives with this condition.”

I am ridiculously excited that this video exists. Even a few years ago, when I was looking into Autism as an explanation for my struggles, I was still being told that women don’t have Autism or being dismissed because I didn’t fit into the stereotype for Autism (which has come from autistic boys and men). So the fact that this video even exists shows that some progress has been made. At this moment in time, it has just short of a million views. A million! That means that potentially a million people now have a better understanding of Autism in women. That’s completely amazing!

There’s so much good stuff in this video – you really should watch the whole thing. But here are some of main points and some quotes that stuck out to me:

1. Autism covers a wide spectrum.

  • “Autism is an internal thing, not an external thing. No one looks autistic.”
  • “Autism isn’t a linear spectrum of high or low. It’s a whole bunch of different traits that are on their own spectrums. It’s kind of a 3D, weird mess.”
  • “Autism is simply a different way of thinking, seeing, and interacting with one’s world.”

2. We have emotions.

  • “I would definitely disagree with the idea that we’re not emotional. I think we’re actually highly emotional. I think that we just… many times we don’t express it the way people expect… We’re feeling it. It’s there. But it just might not come out. And then, at other times, it might be overly expressed.”
  • “We can’t filter them out because we feel them so strongly so we shut down as a way of processing all those emotions.”

3. Social interactions can be challenging.

  • “It takes a lot of effort to appear [like anybody else, like someone not on the spectrum]. Like, it takes a lot of conscious awareness. Social skills are like a muscle for us.”
  • “It’s very, very draining. Even with people that I care for and enjoy being around, I have to psych myself up to be around them.”
  • “All the little things that everyone does unconsciously, autistic people do manually. So that adds up. What I’m doing with every part of my body, I am to some degree aware of and trying to do.”

4. Diagnoses can happen at any age.

  • “A lot of women, women that I know who are autistic, are not diagnosed until their twenties, thirties, or even beyond. A large part of this is because the way that we diagnose Autism is by using criteria that were created by observing boys and Autism looks different in girls and women than it does in boys.”
  • “I feel like, ‘okay, I know why I’m this way, I know why other people are the way they are, so I can bridge this gap.'”

5. The nuances of dating can be challenging… but we do have sex lives.

  • “We just may need more support in order to learn how to make [relationships and sex] happen. We don’t naturally understand the nuances that are involved and there are a lot of nuances.”
  • “People on the Autism spectrum, especially women, are more likely to experience sexual assault or some sort of violent incident than the neurotypical, non autistic population. We are very vulnerable. We definitely can be more trusting because we are very honest and upfront people so we don’t think that other people might not be so honest and might be trying to hurt us.”
  • “One of the traits of Autism is not reading between the lines in social interactions and so much of dating and sexually is supposed to be indirect and subtle and that it’s inappropriate to talk about sex in a direct way, even when you’re teaching it as sex ed.”
  • “No one is teaching the social aspects [of dating and sex]. And honestly, this is where autistic people are the canaries in the coal mine. Teaching the social aspects of sexuality would help everyone. Autistic people need it but it also benefits everyone.”

6. We have lots of different interests.

  • “There is a stereotype that everyone with Autism is into science and math and stuff, like Rain Man. But a lot of people with Autism… women actually, especially… a lot of us are into the arts.”
  • “In my experience, autistic girls are also just as obsessive autistic boys. They’re just obsessed with, you know, fantasy novels or their favourite band or whatever. Not planes, trains, and automobiles.”

7. Bullying sucks.

  • “You know, it’s like somebody making fun of a blind person only in this case you’re blind socially.”
  • “We all start from somewhere but that isn’t necessarily where we’re going to end up and you have to believe that there is going to be a future.”
  • “There’s enough misfits in the world, like, people who got picked on. There’s so many of us. So you do find your tribe.”

8. It’s getting better.

  • “I think things are going to be a lot better for the next generation.”
  • “You know, your kid might be behind their peers but it doesn’t mean they’re gonna be behind forever. Your kid is a full human being who will grow and change just like everyone else.”

As I said, it’s amazing that this video exists and that autistic women are being seen and that people are finally understanding that autism in women looks different than it does in men, and that it can look different from woman to woman. I agree with all of these points but there’s still so much to it, to living with this everyday. So, in addition to these points, this is what I, as an autistic woman, want you to know:

  • I have no idea either – Just because these behaviours and reactions are coming out of my brain and my body, that doesn’t mean I necessarily understand them. I’ve done a lot of reading about Autism and mental health but it’s just different in real life. I’m learning everyday and I hope that you’ll keep learning with me.
  • It’s exhausting – As these women said, it’s draining, even when it comes to things that you enjoy. It’s like you have to consciously process everything you do, everything around you, and that takes up so much energy. I cannot manage as much as everyone else and I find that so difficult to get my head around.
  • I’m doing my best – I promise.

The Last Few Weeks…

I’m not quite sure how to describe the last few weeks. Intense, maybe. There’s been a lot going on and I’ve done things and felt things that I’ve wanted to write about but couldn’t figure out how. So I’m writing this, with the good, the bad, and the weird of the last few weeks.

So first, I got to take part in a research study for the Centre for Research in Autism and Education at University College London. I’ve written about my experience with research studies before (here) so I won’t ramble on but I love doing them. It often feels like Autism takes opportunities away from me but this allows me to do something I’d never expected and that’s really exciting. I got to put the EEG cap back on and have my brain waves monitored while I did some computer tasks. It was investigating perceptual capacity in Autism (which I’ve written more about here) and it was really fun, like a Windows computer game from the nineties. And apart from trying to get the saline gel out of my hair, it was a really great experience.

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I also went and gave blood for the first time. That was very exciting! I’ve wanted to give blood for years but up until now I haven’t been well enough or I was on medication that disqualified me. So getting to do it was really exciting and a really cool experience. Everyone was really lovely and I’ve since had a text telling me where my donated blood has gone. So the whole thing was really special and I will definitely do it again.

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Despite these cool and inspiring experiences, my mental health has been pretty bad: I reached a new low with my depression. I feel like I’m always saying that the current period of depression is the worst it’s ever been but for me, there are real differences: new thought patterns, new emotional states, new lines, new fears. Each period of depression has a different colour. Anyway. It’s been really bad and really hard and I’ve had some desperate moments.

Medication wise, it’s been a rollercoaster. As per usual. I got myself all but off the Amitriptyline a while ago but I just wasn’t ready to try another medication straight away. It’s a tough process and I just needed some time to feel steady, even if that was steadily bad. Maybe not the most logical decision I’ve made but it made sense to me at the time. And ultimately it doesn’t matter now. I’ve started the Clomipramine, which is what everyone wanted me to do. Finding the right medication and the right dosage can be pretty gruelling and I just needed to be in the right mental headspace. I’m not sure how I feel about the Clomipramine but it’s still early days.

And on this last Monday, I went to see Maren Morris play an amazing, intimate show at OMEARA in London. The staff were great about making it accessible and I was let in without having to queue and there was a chair reserved for me – I really, really miss the days where I could stand for hours without a problem. And the show was fantastic. Maren is one of my all time favourite artists/songwriters and it was one of the best shows I’ve ever been to.

“When this wonderful world gets heavy and I need to find my escape… yeah, I guess that’s my church.” // @marenmorris was a complete dream tonight. Beautiful, beautiful songs, singing, and stories. My little songwriter soul is so happy. (x)

It might be blurry but I love this photo of me and @richardmarcmusic after the @marenmorris show tonight. We had SUCH a good time. We’re constantly listening to her music, whether we’re in a songwriting session or just chilling out and playing Mariokart. So we were two happy beans tonight. (x)

And now it’s December. Most of my family have birthdays in December and January and of course there’s Christmas and New Year. So that’s a lot of fun things but it also means a lot of high emotion and stress. It’s a tricky time. I’ve found Christmas difficult for the last few years so I’m going to have to be careful to manage my physical and mental health throughout this period. I’m going back to the post I wrote last year about managing Christmas with anxiety and Autism – if that sounds like it might be helpful, you can find it here.

Meltdowns, Halsey, Halsey, and Meltdowns

I’ve never really written about meltdowns before. Not long after I started writing this blog, I started taking Venlafaxine for my depression, which essentially numbed me to all my emotions. And since my meltdowns have always come from an emotional place, I basically stopped having meltdowns. But I couldn’t deal with not being able to feel anything: everything I do – writing, songwriting, relationships, choices – everything I do is based on emotion. So I came off that medication and my emotions (and my ability to think clearly) came back. But I hadn’t had any meltdowns until recently.

A couple of weeks ago, I was supposed to be going to see Halsey in London, something I’ve been looking forward to for years. Since I saw her in 2016. I love her songs – a masterclass in lyric writing, melody, production, songwriting in general – and she’s an incredible performer, one of the best I’ve ever seen. I particularly love the Badlands album: somehow the songs just make me feel brave. So I was really, really excited.

If you’ve been keeping up with my blog, you’ll know that my depression has been particularly suffocating recently and when it’s that bad, being out and around people is incredibly difficult. Sometimes talking about those emotions and the strength of them is helpful: just letting it out of my body lessens the pressure and makes it easier to cope but sometimes, like this time, it’s like a crack in the dam. It just started pouring out and I couldn’t reign it back in. I was desperate to get to this show though so I kept trying.

My Mum drove me to the station but when we got there, I couldn’t get out of the car. It was like a magnetic force preventing me from getting out of my seat, from making decisions. My Mum suggested alternative ways of doing the day but I could feel all the possible decisions and deviations spiralling away from me and I ended up shouting that I needed her to stop (all that anxiety and stress and emotion just exploded out of me). I just couldn’t. I couldn’t find the right decision but I knew when they were wrong. So my Mum said she was going to drive me to London and take me to the show. That’s the only way I was going to be able to go. So that’s what we did.

This is one kind of meltdown. There seem to be different variations of them based on the situation. Usually, I can’t do anything after having one; usually I just have to go and sleep until I feel like myself again. But my desperation to go to the show pulled me through all of that somehow. It took me over an hour to be able to think clearly and make sentences again and by the time we got to the show, I was just about functional – I could walk, I could interact with others (although I still couldn’t make eye contact with anyone) – although I felt like I was in a different dimension to everyone else: we could see each other and interact but it was like we were on different frequencies. I’m mixing my metaphors I know. Meltdowns mess with your head.

It was an amazing show. Halsey shows are unlike any other shows in my experience. She gives everything to her performance. The energy is just off the charts, her vocals were incredible, and the stage/backdrops are complete works of art. The songs I loved before, I loved even more. The songs I liked before, I loved by the end of the show. The performances and the stories she tells about them make every single song special and I will hold on to all of it forever.

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Because of the meltdown, I was in a really strange headspace: I felt far away and disconnected and kind of lost. So I couldn’t enjoy the show in the way I would have had I not had the meltdown. But I did enjoy it and looking through my photos and videos makes me so, so happy and grateful and proud that I managed to get there. And it helped somehow. I can’t really explain it but it helped. It’s like it filled in all the cracks with gold, to use a Japanese art form as an analogy.

I got home, went to bed, and got up the next day, ready to do the whole thing again, although without the meltdown (or so I thought). As an autistic person and a concert lover, I really like to go to shows twice where possible. With the lights, visuals, music, the scream, the energy expended, the energy expended getting there… I find it incredibly difficult to process everything and I get overwhelmed very quickly. It all starts to pass through me without really landing. Fortunately, the only thing I really spend money on is concerts so that is something that I am sometimes able to do.

For several days after a meltdown, I feel really, really fragile. So my Mum – my hero – said she’d come to the show again. Thank goodness she likes Halsey too.  So we drove up to London, got to the venue, and really enjoyed the show. My god, Halsey is just so good. And seeing it twice just meant that I could take in all of it and that was just so amazing. Some of my favourite moments include (I could easily list everything but I’ll try my best to just keep it to a few):

  • The opening song, ‘Eyes Closed,’ will always be special to me because of the feeling it created. The energy in the room lifted by tenfold and it was the closest thing to magic I’ve ever experienced.
  • How she left it to the crowd by shout the lyric, ‘Do you call yourself a fucking hurricane like me?’ I wasn’t expecting that and the intensity of the crowd just took my breath away.
  • The visuals for ‘Hurricane’ were the most beautiful things I’ve ever seen. And during the song, she shouted, ‘London, this song is a reminder that you do not belong to anybody but yourself!’
  • The little B stage that I thought was made up of LED lights but was actually covered in water (I really have no idea how to explain it) where she and her dancer stamped and kicked water into the crowd during ‘Don’t Play.’

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  • The volume of the crowd when everyone sang along to the stripped down version of ‘Closer.’
  • The way she sat and talked to us, the story she told about ‘100 Letters,’ and how she finished by saying, ‘You only get one you in this life. Do not waste it on someone who doesn’t appreciate who you already are.’ Maybe it sounds cheesy but in the moment, it almost brought me to tears. I’m tearing up even now as I write this. The shows were just one empowering moment after another and for that, they will always be incredibly special concerts to me.
  • The beautiful flower backgrounds for ‘Now or Never.’

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There are so many more moments I could name but I’ll leave it there. They were two really incredible concerts and I feel so lucky to have experienced them.

When the show finished, I was absolutely exhausted, physically and mentally. Walking down the stairs to the venue exit was physically painful. I’d specifically bought a seated ticked because I don’t have the energy at the moment to stand for such a long period of time but there were two girls who stood for the whole thing (almost everybody sat behind them ended up standing in the aisle so that they could see – they refused to sit down or move despite the disruption they were causing) so I kept having to stand up to see. My whole body hurt by the time it was over. Apparently that’s another unexplained Autism thing: fatigue and pain and so on with no obvious cause.

We made it out of the venue and were halfway across the street – standing on the traffic island – when an ambulance less than a few feet away turned on its siren. I don’t know if I can really explain it: it’s something so deeply rooted in emotions and sensory stuff that I’m still searching for the right words. I might never find them. But the sound – the high-pitched, ear-splittingly loud sound – just completely overwhelmed me in a split second. It was like it blew a fuse in my brain and suddenly I was screaming and my knees buckled and I would’ve hit the ground if Mum hadn’t caught me. At some point the screaming turned into crying and shaking and somehow my Mum got me onto the tube, back to the car, and home to my bed and my cats. It took most of the journey before my brain reengaged and I could think in complete sentences but even then I couldn’t talk. It just took too much energy.

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We got home, went to bed, and I spent the next few days recovering. In truth it took me over a week to feel like myself again and to process and commit to memory the amazing moments from the concert before the meltdown, before my brain shut down. It was a lot to make sense of. Meltdowns are traumatic and I don’t use that word lightly. I will write more about them, when I’m in a more stable, more composed place. I’m more than a bit all over the place at the moment. But this page here is an amazing resource so do have a look at that if you want to know more about meltdowns (and shutdowns).

And just in case:

Thank you Halsey (I never know whether to think of you as Halsey or as Ashley). Thank you for an amazing show and a treasured experience. It might’ve been a rough weekend but the shows were worth the meltdowns. Concerts make me feel alive, make me feel real. You gave me that and I’m really grateful.

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