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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I’m Grateful

A while back, my social media feeds were flooded with posts about being grateful and appreciative and thankful. Yes, it was Thanksgiving. I live in the UK and I find it a bit of a weird experience seeing so much celebration and festivity in my online world and have none of that reflected in the world around me. But I do think it’s important to take the time to feel grateful for what I have and I always feel especially grateful at Christmas so I thought I’d write a short post about some of the things I’m grateful for, some big, some small, and some strange.

My family, my friends, my people – This year has been a particularly difficult year but if it’s taught me anything it’s how incredible the people in my life are. Time and time again, they’ve come through for me, supported me, and encouraged me and I couldn’t be more grateful. A few years ago, my relationships felt a bit all over the place (especially my friendships: old ones were separated by university and new ones were still tentative) but this year, I feel like I’ve fallen in love again with all the lovely people in my life, from the people I talk to online to my friends (both from university and from before) to my closest family. And I’m trying my best to make sure they know it.

My therapist – My god, I’m so grateful for my therapist. Not a day goes by that I don’t think about how lucky I am to have her. I can’t even put it into words. Having someone I can trust with anything and everything is incredible (although it’s very scary for me to feel so reliant on a person). I’ve told her things I never thought I’d tell anyone and she’s helped me through things I never thought I’d get through. I can’t thank her enough for all she does.

My animals – I’ve already written about my animals so I won’t ramble on too much but they deserve a mention here. They bring me such joy and help me so much with my depression and anxiety. I’m so, so grateful to have them in my life.

My final year at university – My first two years of uni were really, really hard. They were a real struggle. I learnt a lot and I met some great people but the bad stuff going on often overwhelmed the good stuff. But third year was a blast. I loved it. I had a great group, some great tutors, and I wrote some great songs. I also built some great friendships. I think the best way to describe it was that I was finally feeling in sync, with everyone else but also with myself. I was working on all the things I wanted to work on, I was working with some awesome people, and I was getting some really good responses. It felt so right. Leaving was really hard but having such a great last year means I look back on the whole experience positively even though there were some really hard times.

My health – My health is a struggle and it’s something I wrestle with daily but I am so grateful that it’s not worse. I don’t think it’s helpful to compare your health situation to others’ because someone else’s experience doesn’t mean you aren’t allowed to feel and struggle with your own. I also think it’s unhealthy to focus solely on the positive and repress your feelings about the negatives. But I do think that it’s important to keep a sense of perspective. I’m grateful for all the things in my body that do work. I’m grateful that I do have days where I can walk the dog, go out with my friends, and stay out late. I’m grateful that my mental functioning seems to be getting better. I’m grateful for how resilient my body is. I need to learn from that.

The benefits I receive – I want to write a more in depth post about benefits and the process of getting them because it really can’t be explained sufficiently within this post but I really wanted to include this because I am so very grateful to get the benefits I do. It’s something that just removes one layer of anxiety and that’s such a big deal. I’m also really grateful for the Christmas bonus. I haven’t had a Christmas where I’ve been on benefits so far and the extra £10 with the recent payment just made me so happy.

Clear skin – My Mum laughed when I told her that I was putting this on the list but I am so, so grateful that, for the majority of the time, I have clear skin. It was something I was so insecure about as a teenager. Looking back at the photos, it doesn’t look too bad but I remember so vividly how upset I’d get over it so I’m grateful for every day I look in the mirror and see clear skin. I don’t take it for granted.

Redbull – Redbull should sponsor me. Seriously. I’m actually drinking Redbull as I write this. I only discovered it recently (I’d had to avoid caffeine while taking my previous medication) and it’s been a very exciting find, especially while I’m struggling so much with low energy levels. It gives me such a boost; it makes me feel like a normal, functional human being, not like one who has to constantly assess her energy levels and emotional state. It’s like the fog of fatigue rolls back and I can actually feel all the other emotions, like excitement and joyfulness. I’m aware that I shouldn’t drink it too often but while I’m following every other avenue to improve my energy, it’s a really good back up plan for when there’s something I need to do.

Agents of Shield – Another one that isn’t life changing but oh my god, I look forward to every new episode. I love it. It’s definitely my favourite TV show. For a long time, I avoided everything superhero-related because it just made me miss my Dad but almost ten years on, it’s something that feels really special. I can imagine the conversations we’d have, the debates over how the storylines played out. I can almost hear his voice down the phone, talking me out of a panic attack by saying, “Think of Daisy. What would Daisy Johnson do?” It used to hurt but now that world makes me feel close to him. On a different note, I love it because I find watching it makes me feel empowered. It reminds me that, superpowers or not, doing good – being a hero – is about the choices you make. It’s a weekly reminder to try to do better and to be better. Plus Chloe Bennet (who plays Daisy) is just freaking awesome. The whole cast is.

Taylor Swift – Yes, I am grateful for Taylor Swift. People have made fun of me for liking Taylor Swift for as long as I’ve been a fan but I honestly do not care. She is a fantastic songwriter and I love her music. I’m grateful to have a new album this year but the thing I’m really, really grateful for is who she is as a person. Since announcing the new album, she’s met literally hundreds of people who’ve always wanted to meet her; she’s made hundreds of people’s dreams come true, not for financial gain, not for the publicity, but because her fans matter to her as much as she matters to her fans. How lovely is that? I think that’s amazing. I’m also grateful to her for using her platform to spread awareness about sexual assault, as I am grateful to every person who has done the same. We are not obligated to share our traumas; our only obligation is to ourselves and our healing. Sharing difficult experiences and opening yourself up to the opinions of others is so brave and should never be undervalued. Her level of fame makes any potential fall out worse but it also means she made a huge impact: the RAINN hotline saw a 35% increase in the number of calls they received after she won her trial. She has so much power to affect people’s lives and she strives for that impact to be a positive one. So yeah, I’m grateful for Taylor Swift.

I could keep going – there’s a lot I’m thankful for – but I’ll stop there. I’m wishing you all a safe, happy, and healthy Christmas and I’ll see you on the other side.

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The Importance of Pets

The last post was a heavy one with lots of emotional stuff in it so I thought I’d go for something that was a bit more light hearted this time – try and maintain a kind of balance. So here we go. The animals in my life have had a really big impact on my mental health so I thought I’d introduce them and talk a bit about the positives of having pets when you struggle with mental illness.

This is Lucky, our thirteen-year-old Labrador. We first met him when he was two days old and we’ve had him since he was about eight weeks old. He’s endlessly friendly and enthusiastic. One of my favourite things about him is how unashamedly excited he gets about everything: people arriving, food (even though it’s the same thing everyday), any kind of attention. It’s a good little reminder to appreciate the good things, even if they are everyday occurrences. As he’s gotten older, he’s become very sensitive, especially to people’s emotions. At it’s most extreme, he’s left the room when people on TV get upset. Poor boy. I can relate to that.

And this is Lucy, my two-year-old cat. She’s all energy and adventure, in the daylight hours anyway. Come the evening, she’s very happy to curl up on my bed with me. She sort of reminds me of a teenager that doesn’t want to be seen with her parents because it isn’t cool but once there’s no one around, she enjoys a good cuddle. She loves Lucky and often tags along on the evening walk around the block. I absolutely adore her. She’s incredibly calming to watch and play with; she’s so present and that’s really good for my anxiety. And having her sleeping beside me helps me to sleep because I can focus on her breathing (and purring) and block out any anxiety I have.

She also had kittens last year, which was a great holiday from real life. They were gorgeous and when I was watching them or playing with them, everything else fell away. It was like the world outside my bedroom didn’t exist. They were the only thing that helped me when Christina Grimmie was killed. I’d been watching her videos for years and she was the same age as me; it was very upsetting (and I’m still dealing with the emotions of that but I’ll save that for another post). Watching them play and wrestle and explore my bedroom with such focus and such fearlessness was very soothing. I’m so grateful to have had them for that period of my life. And I was very aware that, as one of the few humans in their lives, I was affecting who they would become, consciously or not. It made me feel like I was making a difference, even if it was only on a small scale.

But back to Lucky and Lucy. They frequently accompany me to therapy (although not together). Neither are actual therapy pets but having one of them with me often helps, especially when we’re talking about really tough stuff. They can be a distraction, a tension diffuser, a comfort.

So there you have it: my animals. They are so important to me and have such an impact on my life that I couldn’t not write about them. I hope you enjoyed this and if you need me, I’ll be curled up with either or both of them.

The End of an Era

I did it. I graduated.

The last three years have been a whirlwind. As I said in my Instagram post on Thursday, “my degree was an endless mix of inspiring, exhausting, frustrating, ridiculous, exciting, stressful, and joyful.” That’s the short version. The long version is very long. I dealt with a lot of grief and disappointment. I struggled with my mental health, discovered I was Autistic, and started to untangle all the threads that come from that. And that’s outside of university. At uni, I wrote hundreds of songs, met some amazing people, got the opportunity to go to Nashville, and ultimately, became a better songwriter. There were classes I loved and classes I hated. It was a constant battle to keep the lid on my anxiety and sometimes I failed. But I wouldn’t change it. My experience is coloured massively by how good my third and last year was. There were moments where I hated it, where it made me incredibly anxious, where I had meltdowns so bad I thought I’d never recover. There were moments I thought I’d never get through, that I couldn’t do what I was being asked to do. But somehow I did. Somehow I’m here, with a first and two graduation ceremonies under my belt.

The first graduation was for UEL, The University of East London. My school, The Institute of Contemporary Musical Performance, is a specialist music college and while it operates independently, it’s officially part of UEL. So we were invited to one of their graduation ceremonies. My Mum and my Granny came to this one. It was very formal – it was caps and gowns. That was something I was looking forward to and something I was very let down by. I’d thought it would be fun but it became a very stressful experience. Maybe it didn’t fit properly, maybe that’s just how it is but my cape kept sliding back and strangling me and my cap kept falling off my head. It took seven bobby pins to keep it on my head. As someone who struggles with sensory stuff, which includes the way clothes feel, that was really hard and really ratcheted up my anxiety. Fortunately, spending time with my friends, messing around and laughing, helped to keep it at a bearable level.

The ceremony itself was a bit strange. Because I only went to UEL once, it kind of felt like I was intruding, like I didn’t belong there. All the talk of the ‘UEL community’ made me feel a bit disconnected from the whole thing but the speakers were very good. I’d like to share something Geoff Thompson, the chair of the governors, said in his speech: “You are strong. Don’t ever, ever forget that you are strong… Never, never, never, never, never, NEVER give up on your dreams. It is not an option. It is not a choice.” You know, that was just what I needed to hear, just as I’m leaving university and heading out into an uncertain world. It was inspiring. It was empowering.

And all of a sudden, we were lining up to walk across the stage to shake the chancellor’s hand. It was weird: I had tunnel vision. No one could have applauded me as I walked across the stage and I wouldn’t have noticed. I was completely focussed on walking towards the chancellor, shaking his hand, and walking down the steps. It’s funny how something that you usually don’t have to think about – like walking – suddenly seems to take a lot of effort. But I did it, I got back to my seat, and I cheered for my friends. We threw our caps and then it was over. Graduation one was done. I’d thought I’d stay for a drink with my coursemates but after all the anxiety, I was completely exhausted. So I (eagerly) returned my gown and headed home.

The second graduation was a couple of days later and much more fun. This was just our school so it felt a lot more personal. Even though I don’t have many friends outside my course, I recognised a lot of faces from the other courses and we’d all shared the same space. We’re all connected by that. We didn’t have to wear gowns but it was still formal. Everybody looked gorgeous; it was really fun to see everyone dressed up. All four of my parents came to this one, which was amazing. I’ve never had all of them at a school thing before so that made me very happy. I was positively giddy.

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I really enjoyed the ceremony. The head of each course made a speech and then presented each of their students with the scroll. My favourite speech came from my programme leader, Jonathan. It was thoughtful and warm and inspiring. He even gave this blog a shout out, along with two other projects my friends have worked on. It was a very special moment. Another special moment was watching one of my best friends receive her scroll while her own song played. That was awesome.

And suddenly, it was my turn and I was walking across the stage, giving Jonathan a hug, and accepting my scroll. We posed for the photo and then I was moving again. I was a bit more aware of what was going on this time. The UEL one was a good rehearsal in that regard. There wasn’t an opportunity to thank my parents so I made the best of what I had. I located them in the crowd and did this:

It was important to me to do that.

Everyone received their scrolls and then we gathered for the reception. It was lovely to celebrate with everyone, to catch up, to introduce my parents to all these people who have played such an important part of my life in the last three years.

And that was graduation. The only other thing to add is that, to celebrate, we headed out for drinks. It was my first experience being in a club and my first experience drinking cocktails, neither of which I would say I enjoyed but it felt very empowering to try those new things and not feel trapped by my anxiety. Major thanks to my friends for looking after me and making it such a positive experience.

I will write more about my experience at university at some point but it’s a pretty big task. I need to go through my diaries and pull together some stuff before I can write an accurate account of that time but I will manage it at some point. It was a crucial time in my life. It’s a big part of who I am.

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