Grateful 2019

This year has been a weird year, something I don’t really want to get into until I do my end of year review. But it has been a weird year and with all the medication changes and mental health issues, it’s only the last three months that are really clear in my memory. I’m very aware of being grateful – there’s so much to be grateful for – but having had such a fuzzy brain, I feel sure that I’m forgetting things, something that’s causing me a lot of anxiety. Pieces of the year are just missing from my memory, whether blurry or plain misfiled, and so I worry that there are moments in there that I should and would be grateful for if only I could get a grasp on them. But I can’t. So this is the best I can do. Please forgive me if I’m leaving things out.

My Mum – I always list (or shout out) my Mum because she is the person that I am most, most grateful for. Being the person I am with the disabilities I have, I couldn’t survive in any way without her and for that, for her presence, I am so grateful. She goes above and beyond to help me through the bad days and achieve on the good days and I’m just in awe of her. She is the most caring person I know.

Richard (my best friend and writing partner) – During the first part of the year, Richard and I planned an EP that we were both so, so excited about. And then suddenly, overnight it felt like, that excitement disappeared for me. It was replaced by paralysing anxiety, so bad that I couldn’t even talk about the project. It was awful. But we got through it and the EP – Honest – is now slowly being released, all of which is largely because of Richard, both practically and emotionally. And that’s just our working relationship. He’s always there to text me shitty jokes, to help me write songs when I’m banging my head against the wall, to eat sweets and watch The Good Place with. I don’t know what I’d do without him.

My Family and Friends – I often give a specific shout out to Mum and Richard because they seem to be the ones who most commonly see and help me with my bad days and my anxieties but the rest of my family have also been amazing this year. They’ve always been there when I’ve needed them. I haven’t seen many of my friends as much as I would’ve liked to this year. Between the depression, the trying of different drugs, and starting the Masters, it’s been a messy and complicated year that I will write about more in my end of year review. Hopefully I’ll get to see them more next year.

The animals in my life – We started the year with our dog, Lucky, and three cats, Lucy and her kittens, Mouse and Tiger. We’d dabbled with the idea of Mouse having kittens, just to do the kittens experience one more time, but just as I changed my mind – it was too much change and I needed everything to stay the same – we came home and Mouse was having kittens, despite the vet telling us the week before that she wasn’t pregnant. And now we have two kittens in the house, two black furballs called Sooty and Sweep. They’re gorgeous and them, plus the rest of the animals, have really helped me with my anxiety (which has been overwhelming) over the last three months and that has been so, so important.

My Masters Degree group – Starting a new course or a new anything is always scary and for me, the scariest part tends to be the new people. Fortunately, I’m doing my Masters course at the same uni I did my BA so that was really the only new thing. But I got really lucky: I ended up in a really small group and they’re all really lovely people. It feels like we’ve gotten to know each other pretty well and we’re all so supportive of each other. The groups are going to change somewhat after Christmas but it became a really safe environment, creatively and personally, and I’ll really miss it. I know I’ll still see them and our friendships won’t suddenly end but I’ll miss our little pocket in space and time.

My benefits being renewed – Given how scary the political climate in the UK has become and continues to become, I am so, so grateful that my benefits were renewed before the election and will last until just before the next election, regardless of what happens in the next few years. That was such a relief to learn. I don’t know what will happen after that but for now, I feel like I can breathe a little bit easier.

Red Bull – The major side effect of my current medication is this overwhelming sleepiness. When I told my psychiatrist about it, he said that it should wear off but that it could take months. I’d been drinking Red Bull to help me stay awake and help me concentrate; we discussed the fact that it’s not massively healthy but it’s his opinion that the sleepiness will wear off, hopefully within a few months and then I can give up my Red Bull habit. So we’re keeping an eye on it and in the meantime, Red Bull is my best friend.

Fanfiction – In times of great anxiety, I’ve reverted to a major hobby of my early teenage years. I read stories from every film and TV show I loved and wrote reams of the stuff. I’m not writing it this time around but reading it and getting lost in new stories from familiar worlds has been a very effective calming strategy. It’s made me feel safe. And it’s kept my creativity (always stifled by my anxiety) burning low, in the background, for when I’m ready for it.

His Dark Materials – I have been in love with this show from the first episode. I honestly can’t remember the last time I was so impressed by and excited about a TV show currently airing (I’ve fallen in love with shows after they’ve ended, for example). Daphne Keen is an incredible Lyra and Ruth Wilson blows me away every episode as Mrs Coulter. The sets, the CGI, the characters’ relationships with their daemons, the complexity of the characters, even the introduction sequence are absolutely extraordinary. I’m so gutted that the series is over but I can’t wait for the next one.

Taylor Swift – I’m pretty sure I’ve always mentioned Taylor Swift but I probably always will. Her songwriting is incredible, she’s one of the hardest working people in the music industry, she’s generous, she’s intelligent, and she’s exceptionally kind. She’s one of my favourite singersongwriters and her recent album, Lover, is so, so good: one of my favourite albums of the year, possibly one of my favourite albums ever. It’s beautiful and vulnerable and special. She’s also been saying some very smart and very important things during her recent press cycle:

  • “I’m a woman, I’m not a coat hanger. I need to feel healthy in my life and I need to take pleasure in food and I need to not use my body as an exercise of control when I feel out of control in my life.”
  • “Do not let anything stop you from making art. Just makes things. Do not get so caught up in this that it stops you from making art or if you need to, make art about this. But never stop making things.”
  • “You’re not always going to be inspired and that’s okay.”
  • “If someone’s gonna take your hand, they’d better take your hand, scars and all.”
  • “I guess what I’m trying to say is that all any of the artists, or really anyone in this room wants, is to create something that will last, whatever it is in life. And the fact that this is an award that celebrates a decade of hard work, of art, and of fun and memories, all that matters to me is the memories that I had with you, the fans, over the years. We’ve had fun, incredible, exhilarating, extraordinary times together, and may it continue! Thank you for being the reason why I am on this stage, from the first day of my career until tonight.”
  • “I think that artists deserve to own their work. I just feel very passionately about that.”

And lastly, she’s fearlessly standing up for artists and their right to own their music. It’s a big, hard fight but she’s using her platform and her power in the industry (“as your resident loud person”) to try and change that. Of course, she’s personally affected by it but she could handle it in private. Except she’s not: she’s speaking out and working to create change. And as a new artist, I really appreciate that she’s trying to make the industry I’m entering fairer and less discriminatory.

I think I’ll stop there. I’ve got my Christmas wrapping to do and a Christmas tree to guard from some very inquisitive cats. I hope you all have a safe, happy, and healthy Christmas where you feel as special and beautiful as you are.

EDIT: Honourable mentions to Nashville and the lovely people there, Agents of Shield, and fairy lights. But if I keep going here, we’ll be here until 2020.

2018 in Review

This year has been a struggle. Almost eighteen months ago, I made the decision to change my medication and that has basically been my life ever since. Lots of pills and doctors appointments but mostly dealing with the side effects, everything from nausea to shaking to a complete inability to think clearly. I don’t think I realised what a huge undertaking it was going to be but it’s not exactly surprising: you’re throwing all the chemicals in your brain and body out of whack. I tried Venlafaxine, Lithium, and Lamotrigine; I weaned myself off Venlafaxine, tried Amitriptyline, and now I’m taking Pregabalin and Clomipramine. This is the most promising combination so far and I’ve actually had a few really good days so I’m cautiously optimistic. But it’s been a long, hard road, sometimes so difficult that I wasn’t sure I’d survive it. And I don’t really feel able to acknowledge the good bits without paying tribute to the really tough things I had to go through and so got through.

The first of The Big Difficult Things was moving house. God, that was a struggle. Having thought that I’d found some sort of peace around it, when it came to the day, I was absolutely devastated. There were a lot of tears – from all of us. That house was my home for fifteen years – home to the greatest triumphs and tragedies of my life – and so, to some extent, it will always be my home. I think I could probably walk into my old bedroom twenty years from now and fall right back into that old rhythm.

I’m still learning the rhythms of the new house. There are days where it feels normal and then others where I hate it so much I could scream. Most of the time, it still feels like someone else’s house. Someone else’s house with all our stuff in. But every day is a step in the right direction. We’re filling all the empty space with memories, slowly but surely.

I’ve been writing a lot about Claire Wineland of late but I couldn’t write about this year and not mention her. Her death was another of The Big Difficult Things of this year. I stumbled across her YouTube channel late last year and have been following her on social media ever since. She was – and still is – a big inspiration for me and her death hit me really hard. It just makes no sense to me and never will and I’m still struggling to cope with that.

And through all of this, depression has been my constant, oppressive companion. While I had experienced depression before, this was a whole new kind of prison. The lows were lower than I’d ever experienced and there were several pretty scary moments. And as well as affecting my mood, my depression made it almost impossible to write songs. I’ve had many discussions about writer’s block over the years and I’ve always thought that there are things that can make writing difficult and so you have to figure out what’s causing the block and address it. In my case, it feels like depression suppresses the creative part of my brain: I don’t get random sparks of inspiration, I can’t solve problems creatively, and any active creativity – like songwriting – is like pulling teeth. It feels like writing songs requires a certain level of functioning that I’m just not capable of reaching while depressed. I want to write more about this – about depression and writer’s block – but that’s for another post.

Having said all of that, there have been good days, as well as good experiences on bad days.

By far the best part of this year has been the time spent with my friends and family, whether that be online or in the physical world, in Nashville, London, or Brighton. Or anywhere in between. These people have kept me going through the hardest period of my life so far and I’m so ridiculously grateful to them for that.

I got to travel a little bit this year, which was amazing. I managed to get back to Nashville where I had the most intense ten days possibly of my life. I got to see some lovely people, write songs (or try to), listen to some of the best songwriters in the world, and play a Song Suffragettes show. Even though I was incredibly anxious about it, that may very well have been the best day of my year.

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I also travelled to Iceland for the first time and saw so many beautiful things, including a 60m waterfall, the Diamond Beach, and the Northern Lights. The natural scenery in Iceland took my breath away time and again. It felt like the first breath you take after being underwater. Of course, there was a lot of anxiety during the trip but it helped me in a way that only the magnificence of nature is able to.

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There have been more wonderful live music events than I can count: Paramore, Kelsea Ballerini, Sugarland, Kacey Musgraves, Natalie Hemby (and all of Tin Pan South in Nashville), Frank Turner, Betsy Lane, The Shires, Sinead Burgess, The Brummies, Halsey, Kina Grannis, Aislin Evans, Maren Morris, and of course, Taylor Swift. Despite the anxieties around concerts, these are the places where I feel most alive and so, throughout this difficult period, I’ve always tried to ensure that there was another concert to look forward to.

And despite my musical struggles this year, I’ve actually played a few gigs and played shows that I am so proud to have been a part of. I got to play with WRTW again and it was even more fun than the first time (if that’s possible). I played Autism’s Got Talent in London, which was such a great opportunity. I played for Brighton Soup and Disability Pride in Brighton, two amazing organisations that I can’t praise enough. I also played Summer Fest in Worthing, my first show with my awesome friend, Richard Sanderson. And of course, I got to play a Song Suffragettes show when I was in Nashville.

I’ve also managed to do a handful to Autism research studies, as well as giving blood. I’ve been feeling so useless so I tried to contribute as best I could during this time where I’ve felt incapable of contributing anything at all.

Another big part of this year was getting used to the kittens: my cat had two kittens in February and me and my Mum just fell in love with them so we ended up keeping them. I love them dearly but it has been a major adjustment and a real struggle, especially with the daily battle that is depression. So this has been both a good and a bad thing. I want to write more about this whole experience because there were – and still are – a lot of complicated emotions involved. But above it all, we have Lucky and Lucy and the kittens and I love them more than life itself.

So, that’s it: 2018. It has been a hard, hard year, and one I’m very happy to leave behind but I’m cautiously optimistic about the next few months and the next year. I’ve felt better in the last couple of weeks than I have all year and I’m hopeful that this is characteristic of what’s to come.

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“2018, the year of living, fighting, but ultimately, surviving depression. There was a lot of gold in the grey but I’m so ready to move on to 2019.” (x)

Grateful 2018

Last year, I posted on Christmas Eve about the things I was grateful for (here) and I really liked it as a practice. Since we don’t have Thanksgiving in the UK, there’s no holiday directly related to being thankful and I think it’s important to make time to think and feel these things. And I always feel overwhelmed by how lucky I am at Christmas so this seems like a good time to do it, to do this post.

My family – I am endlessly grateful to my family. They have loved and supported me through some really difficult times this year and even though that’s what family should do, I’m so, so grateful to them for doing that. I don’t take them for granted. A particular shout out to my Mum for going above and beyond. She’s my hero.

My friends – I am also endlessly grateful to my friends. I haven’t seen as much of them as I would’ve liked this year but I’ve been doing my best to stay in touch. They mean so much to me and I hope they know that. Again, a particular shout out to Richard because he has been incredible this year, supporting me as a friend and a writing partner. I’m more grateful than I can say.

My therapist – I’ve said it before and I’ll say it again: I am so grateful for my therapist. My depression has been brutal this year and there were more than a few moments where I had no idea how I was going to survive (I say that like it’s over and I’m not sure whether it’s over or not). I absolutely wouldn’t have made it through that without her.

Song Suffragettes – If you don’t know what Song Suffragettes is, prepare to have your musical life changed. It’s an organisation in Nashville that focuses on boosting the up and coming female songwriting talent and they have weekly shows showcasing these awesome women. I was lucky enough to join them on my last trip to Nashville and it was definitely the best day of my year (and one of the best in my life). Everyone involved is so lovely and they are doing such important work. Check them out on Twitter here.

Claire Wineland – I’ve written about Claire quite a bit (here, herehere, and here if you’re interested) but she’s been on my mind a lot. I miss her – her presence in my life – more than I know what to do with but I am so grateful to have had her at all. That doesn’t make me okay with what happened (not at all) but I am grateful. She was an incredible human being and she’s still helping people even though she’s no longer here.

Flowers – This is a simple one but having beautiful, colourful flowers around improves my mood and improves my day. In a year that’s felt very dark and colourless, having flowers in the house has made a noticeable difference to my day-to-day life.

My bullet journal – Having somewhere to organise my thoughts and my life has been so helpful. Up until now I’ve never had a system that really worked for me so this is a big deal. I’ve written more about it here.

Lauren Kaech – I discovered Lauren on YouTube earlier this year and I have found her videos and her attitude really inspiring. I talked about her in my post about social media favourites and she makes videos about her experience of living with an eating disorder. And while that’s not an experience I can directly relate to, there are aspects that I can. She talks about facing the things that scare you, the realities of happiness, and a whole host of recovery related topics that apply to anxiety and depression as well as eating disorders. I’m so grateful to have had this in my life this year and at my very worst (in the very worst of my depression), looking forward to her videos got me through the day and kept me going.

Swimming – I’ve written a whole post about this (here) but I wanted to include it here because I’m so, so grateful for it. Almost every morning, I get up and go to the pool and do something that makes sense. Even if the rest of the day doesn’t, that does. I’m also really proud of myself for keeping this up for six months, especially given how bad my depression has been.

Taylor Swift – Miss Swift was on my grateful list last year and the reasons are all still relevant. But this year, I got to see her live (twice!) and that experience was so much fun in the middle of a really dark place. I felt all that weight lift for a couple of hours and that is a big deal. I’m also really grateful to her for voicing her political opinions (breaking her career long silence on the subject) and encouraging young people to vote. In the twenty four hours after she made her Instagram post on the subject, 65,000 people registered to vote, which is just incredible. It made me really proud to be a fan. I don’t think I can say more than, as always, I am grateful for Taylor Swift.

So there you have it. I could write more – there are so many things to be grateful for – but I’ll stop there. I’m wishing you all a safe, happy, and healthy Christmas and I’ll see you in the next post.

So I Wrote A Thing For World Mental Health Day

(Trigger warning for self harm.)

Today is World Mental Health Day.

If I’m honest, I’m not really sure what to say. I’m in the middle of the worst depression I’ve ever experienced and I’m very aware that my perspective, my opinions, my hopes are distorted by that. If this was a video, I might just sit and cry. But this day is important so I’m trying to pull myself together and put something out into the world that is (hopefully) positive (and maybe helpful).

This year’s theme is the mental health of young people. When it comes to things like this, I’ve never felt comfortable talking about anyone’s experience but my own. So that’s what I’m going to do. I hope that’s okay with you guys.

My experience at secondary school was a very mixed one. I spent the first three years dealing with some complicated health problems but by the time I reached Years 10 and 11 (ages fifteen and sixteen for those of you who don’t know the education system in England), I felt really settled. I loved learning, particularly English, Maths, History, Psychology, and Philosophy (real shout out to my teachers in all of those subjects). I got real satisfaction from working hard and that was reflected in my grades. I came out of secondary school with not unimpressive grades, especially when you consider I missed most of the first three years. So I felt pretty good about going into Sixth Form (A Levels/ages seventeen and eighteen).

But that was when it all started to unravel. I really, really struggled. I’d gone from completing the work with ease to barely scraping by. I couldn’t understand it: I was trying so hard and it didn’t seem to make any difference. And I couldn’t see it at the time, but my anxiety was getting worse and worse and what I now know to be depression was creeping in. But I didn’t know it was happening so I just kept pushing forwards. I spoke to a couple of people about the high anxiety I was experiencing but each one told me that anxiety is normal and that was the end of the conversation.

It all came to a head when I failed an exam, something that had never happened before. I’d been told I was all set for an A* and I came out with a U. I was absolutely devastated. I know now that our worth as human beings has nothing to do with grades but I was eighteen years old: I had only ever been valued based on my grades. It’s no one person’s fault but that’s how the education system in this country works. It needs changing.

But back to this little story. I don’t remember much after I opened the envelope and saw that U but I ended up in one of the less used college toilets, self harming repeatedly with a broken paperclip. I don’t know how long I was there (long enough that the automatic lights went off and I was plunged into a very appropriate darkness) but at some point, my friends tracked me down and coaxed me out of the stall. I still remember seeing my reflection: my make up all down my face, my hands shaking, and the scratches barely hidden by my long sleeves. One friend took me to a nearby café, bought me a hot chocolate, and just talked to me. And eventually I told her what I’d done. Her kindness and gentleness was so healing, not for the whole problem but for that very difficult day. I will never forget it and I don’t think I’ll ever be able to repay it.

After that, I dropped out of that course and clawed my way out with two A Levels and an Extended Project, far less than I and everyone had expected of me. I went straight into a music course but had to drop out two days in because my anxiety was so bad that I just couldn’t cope. I spent a year grappling with the anxiety and depression, trying the first of many antidepressants (so many) and trying to retake some of the exams in the hope that I could improve my A Levels (I didn’t end up opening the results of those until after I finished my degree, three years later, but that’s another story). During that year, I tried desperately to get help from the NHS to no avail: my anxiety was so bad that talking to people I didn’t know was practically impossible and they refused to help me if I wouldn’t talk. Eventually we were forced to go private, something that I’m endlessly, endlessly grateful has been possible. And I only managed to get my diagnoses when my university said they weren’t able to help me if I didn’t have an official diagnosis.

It still upsets me to talk about. I asked and asked and asked for help but no one either seemed able or willing to help me. I would not be as twisted up now had that not been the case. The information and support was not available to me, it wasn’t available to my family, and it wasn’t available or deemed important enough (I’m not sure which is worse) to the medical professionals I saw. That has to change. It is not acceptable.

Now that I’ve told my story, I want to include some other important, relevant stuff.

The first thing is that I want to link you to Hannah Jane Parkinson’s recent article in The Guardian. She makes the very important distinction between mental health and mental illness. And this is where, I think, physical health and mental health are most comparable: your mental health is something you take care of (or don’t) everyday, by eating and sleeping well, exercising, talking through your emotions, and so on. Mental illnesses, similarly to physical illnesses, can be caused by not taking care of your mental health but there can also be genetic factors, environmental factors, and just hard stuff going on in your life.

WAYS TO HELP YOUR MENTAL HEALTH:

  • Talk – Talk through your feelings with someone you trust.
  • Keep a journal – This way you can air your thoughts and feelings in private.
  • Keep in contact with friends – It’s really easy to get busy and fall out of touch but spending time with people you love and feeling connected to other people is so important.
  • Exercise – This doesn’t mean every or any kind of exercise will help. On a personal level some types of exercise can potentially hurt your mental health. You just need to find the one that does help and then it will really help. I always recommend swimming because it’s non-weightbearing and therefore causes less strain on your body when you’re potentially already struggling with physical symptoms, like fatigue.
  • Eat well/drink sensibly – Everything we put into our bodies affects our minds.
  • Be mindful of your commitments – Yes, social interaction can be really helpful but if you’re taking on too much, it will take more from you than it gives you. And then you won’t be able to cope as well with whatever else is thrown at you.
  • Ask for help if you start to feel mentally and emotionally overwhelmed – Fortunately it’s starting to become easier to access support and counselling but even if it’s a struggle, it is a struggle worth going through.
  • Spend time with animals – It’s scientifically proven that being with animals is good for your health!

WAYS TO HELP YOUR MENTAL ILLNESS:

  • Work with a medical professional/therapist that respects and understands what you’re struggling with – Finding one can be the mission of a lifetime but having that presence in your life whose sole purpose is to help you through your struggles is incredible.
  • Medication – If you’re prescribed medication, take it diligently.
  • Try to keep track of your triggers – Knowing what they are doesn’t always prevent them from sending you into a complete spiral but even one spiral avoided is progress.
  • Create a support system – This isn’t something you can necessarily do without help but, over time and with the help of people who care about you, building a circle of trusted people who will support you through whatever it is you’re going through is so special and helpful.
  • Take time off if you need it – This is one I think we all struggle with. It’s a learning curve for a lot of us but it is important and can prevent small problems from becoming big problems.
  • Find a stress reliever – Whether it’s reading, or watching every episode of your favourite TV show, or doing something artsy like watercolouring, taking a break from all the stuff in your head is well worth doing.
  • Create a safe space for yourself – Living with a mental illness is exhausting and so having somewhere where you can just exist without thinking or masking is so important.

And of course, there is overlap between these two lists.

Where we go from here, I’m not sure. The information about mental health and mental illness is spreading and spreading and more and more people are speaking up. Now we need the right systems to support it: doctors, treatment, government officials who advocate for positive change. For now, that’s all I know. For now, I’m just trying to manage one day at a time.

(And a gentle reminder, my debut single, ‘Invisible,’ which I wrote about my experiences with my mental health is available on iTunes and Spotify and all those places and all proceeds go to Young Minds, a charity that supports young people in their mental health.)

Moving House When You’re Autistic

So I just moved house. It was not fun. I am going to write about it in more detail – I think the experience might be useful, maybe for someone trying to understand how change can affect a person with Autism – but I’m not ready to do that yet. It was really difficult and I’m still pretty emotional about the whole thing. Change is notoriously hard for people with Autism but I think the permanence of a change like moving house is particularly difficult. I definitely learned some lessons during the process so I thought I’d share them.

Some context before we begin: Not only were my family moving, we were separating into different houses, which was something I hadn’t been expecting. That was a real shock to me and made the whole thing even more difficult. But we’re still close and live close enough that we still see each other as much as before, which I’m really grateful for. Now I live with my Mum; I’m not ready to move out.

Right, here we go.


TIPS

Prepare for emotions, yours and others – First, however you feel is okay. It’s a big deal. Whether you feel everything or nothing, it will take time to work that out. And just when you think you’ve dealt with all of that, it’s time to move and it all comes back. There were lots of tears on the day of the move, as well as the few days after. It’s emotional and stressful and exhausting: the perfect mix for someone to get upset. I think the only thing you can do is be gentle with yourself and each other and give people space when they need it.

Build in as much time as possible – Moving house is exhausting and emotional. And packing at the last minute just makes it worse. Giving yourself time allows you to be careful and methodical and it means you can take breaks if it gets too much.

Label the boxes – The destined room is not enough. By the time you’ve packed everything you own and transported it to your new home, you’ll have no idea where anything is. And every time you need anything, you’ll spend at least twenty minutes digging through all the boxes in order to find it. It will drive you up the wall.

Pack a suitcase – You know me: preparation, preparation, preparation. Make sure you have a bag of things you’re going to need for at least the first week. You might think that you can get yourself sorted in a couple of days but chances are you can’t and you really don’t want to find yourself out of things like clean clothes and make up remover. You don’t need that on top of the stress of moving. Also, remember to check the weather forecast before packing, just in case you find yourself caught unawares by a heat wave with only jumpers to wear like I did.

Try to create a safe space for yourself – Moving house is messy and if you’re anything like me, being surrounded by clutter for extended periods of time makes me feel very claustrophobic and panicked. So, both before moving out and after moving in, I tried to keep one area calm and somewhat neat to give me a space to decompress and recharge in. I wasn’t always successful at keeping it tidy but for the most part, it helped.

Set a reminder to put all your food in the fridge – The last thing you need is all your food going off and with a million things to remember, you’ll most likely forget something. Let that be something else.


QUESTIONS TO THINK ABOUT

How much help do you need?

Depending on your capabilities, you may need to enlist some help to move everything, whether that’s professional movers or friends and family or both. You really don’t want to get halfway through moving day and be unable to keep going so make sure to think carefully about what you need and ask for that help well in advance.

Do you need to be there on moving day?

This obviously depends on whether you’re moving with your family or by yourself: the demands on you will be different. In my case, my family knew how difficult the whole experience had been and so suggested going to see a friend while the removal people did their thing. They thought that the empty house would upset me but I felt like I needed to be there; it helped me say goodbye.

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Do you need a clean slate or do you need to keep things familiar?

As already mentioned, change is often hard for autistic people so you might feel the need to keep things as similar as possible, such as furniture and when decorating. But on the flip side, many people with Autism feel emotions very strongly so a change might actually be the less overwhelming option. It wouldn’t be healthy to be constantly reminded of an upsetting event.

Do you need closure and if so, how can you get it?

I definitely needed to say a real goodbye. I’d lived in that house for fifteen years; I felt safe there and there are a lot of memories associated with it. For a long time, it felt impossible to leave. So, once I could consider it, I thought a lot about what would help me leave, knowing that I wouldn’t be coming back. So, on the last day, we took some pictures of me in my room and then I put a letter I’d written for a future resident under a loose floorboard. I can’t tell you why or how but that did help a bit.

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ADVICE FOR FRIENDS AND FAMILY

If you’re telling an autistic person that you have to move, be clear. Give them all the information. Especially when there’s so much emotion, it can be hard to process what’s going on so anything that isn’t explicitly stated may get lost.

Give them as much warning as possible. Something like this is really difficult to process – there are so many emotions involved – and it came take time to absorb and make sense of.


So I think that’s everything. I hope this has been interesting and helpful. One last thing to add: I found this article recently that is more relevant to someone moving out of their family home and thought it was definitely worth including here.

Introducing my Mum

In this post, I’d like to introduce my Mum, Sandra. We’ve been talking about her writing a post or two for a while because I think she’s got some really valuable stuff to add to the discussion of Autism, and Autism in women. Most of the resources around Autism tend to be written by parents of young children and while that viewpoint is important, the lack of any other viewpoints is something that needs to be addressed. There’s very little written by young people with Autism and I can’t find anything written by the parents of young people with Autism. So we thought we’d throw this out there.

We’ve never had a typical relationship: I’ve never felt the need to rebel and I can probably count on one hand the number of times we’ve really argued. We just get on really well and we share everything; we talk everything through. So she’s been on every step of this whole journey with me, from the moment I realised that what I was feeling wasn’t normal. She must’ve talked to hundreds of people – friends, family, health professionals in multiple fields – and spent hours and hours reading up on every possibility. She’s been to every appointment with me and she came to therapy with me until I felt confident enough to do it by myself. She pushes me when I need pushing and she protects me when I need protecting. I genuinely wouldn’t have made it this far without her. She’s always believed in me and she’s never stopped pushing to get me the help I needed, not for a moment. I am more grateful than I could ever express. She spoke for me when I couldn’t and she still does if I need her too. I only have to ask and she’s there. She is my hero. I couldn’t be me without her.

Here is a little paragraph from her to start her off:

‘Get out and take up dancing!’ was one of the many pieces of well-meaning advice I was given during my search for help for Lauren. ‘Tough Love’ was another suggestion and was just another way of saying the same thing. Because of the age she was when we started seriously looking for answers, many people, both professional and otherwise, saw much of her anxiety and depression as the ‘normal’ behaviour of an adolescent. But I felt there was more to it and knew I had to try and get some answers. So I began researching: talking, reading, anything to better understand what I saw Lauren struggling with. Now, several years later, I still remember my response to that suggestion: ‘I will take up dancing once I find the help my daughter needs’. And I have been lucky. We have been lucky. We have found some extraordinary people to help and support her but it has often been a long and isolating journey and one that I wonder whether might be useful to share for other parents or carers finding themselves in a similar situation.

We’ve been throwing some ideas around but nothing’s written yet. Between work stuff, moving house, and my mental health, there just hasn’t been the time. But we’ll get there. Stay tuned!

 

Introducing My Autistic Self

Someone asked me the other day how I told people that I’d been diagnosed as autistic and I realised that I’ve never told that story on here. So I thought I’d post it as part of Autism Awareness Week. Maybe it will be helpful to some of you.

I was between my first and second years at university and I consider myself very lucky that I was diagnosed during the summer holiday. It gave me time to really process the news and figure out how I felt about it, as well as decide who I wanted to tell and how I wanted to tell them. I could absolutely set the pace and break it down into smaller tasks. It’s a big thing to tell people so I wanted to find the best way to do it.

I decided that the best way for me to tell people was to send a Facebook message. There wasn’t going to be an opportunity to tell everyone at once and I’ve always felt more comfortable sharing important news through writing. It gives me more time to think about what I want to say and I can always walk away and come back to it if it isn’t coming across the way I want it to. It also means that I don’t have to worry about processing other people’s reactions; I can think about one thing at a time.

This is what I ended up with:

“Hey guys, I just wanted to let you know of a change in my life without making a big announcement. Over the summer, I was diagnosed with Autism Spectrum Disorder (still commonly referred to as Asperger’s). Apparently it’s commonly missed in girls and young women as it presents similarly to Depression and Anxiety, which, as many of you know, I’ve struggled with for a long time. But this is a good thing because I’m finally getting the support that I need/have needed to manage it, the social anxiety, general anxiety, etc. Overall, nothing’s really changed, other than the fact that this thing I’ve been struggling with has a name now but I wanted you guys to know since it does affect my life. If you want to ask me anything, please do J Look forward to seeing you all soon.”

The second job was to choose who I wanted to tell. Within my family, it hadn’t been a secret that we were looking into an Autism diagnosis and so a lot of them already knew by this point. So that left friends and acquaintances. I wanted my good friends to know and I also wanted to tell the people that, because of university, I would be spending a lot of time with. It was such a big thing that I didn’t want to feel like I had to keep it a secret. I also didn’t want to accidentally spring it on anyone. I went down the Facebook list and tried to add everyone I thought fitted into those categories. I’m sure there are people I missed but I did my best.

I hit send and then did my best to forget about it for the rest of the evening. Just sending the message was a lot to process. So I had some quiet time with my family, watching TV and having dinner. And only then, a few hours later, did I check the response the message was getting. These were all lovely people so I wasn’t expecting a negative response but I was a bit overwhelmed by how positive the replies were. I unashamedly admit that there were several messages that just about had me in tears. I don’t think it’s fair to post anyone’s actual words but I had people thanking me for sharing the news with them, telling me I was brave for doing so, saying that they were glad I was getting support and that they loved me. Those messages still mean so much to me.

Of course, there have been occasions where I’ve had to tell people face to face but the positive response really boosted my confidence. So I hold up my head and say the words like they’re a shield to protect me. I don’t always feel as self-assured as I appear to when I tell people but I have found that it helps my confidence to act like I do. I’m not generally a fan of the ‘fake it ‘til you make it’ approach – I usually find it invalidating – but in this case it has helped. Maybe I’m not faking it, maybe I’m using it as something that protects me rather than something that weakens me. I don’t know.

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