Finding HopeA Letter Under The Floorboards
Posted on April 16, 2019
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
Moving House When You’re Autistic
Posted on April 24, 2018
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.
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.
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.
Living With The Volume Up Loud
Posted on March 28, 2018
I have always been incredibly sensitive, ever since I was a little kid. It was one of the words used most commonly to describe me as I grew up. While it was usually emotional, I was also sensitive to what was going on around me and that seems to have increased over time. I can get overwhelmed by all the sensory information coming into my brain and I end up struggling to process it all. The processing can get stuck or I’ll zero in on one specific thing, like tunnel vision. It can also happen emotionally. The smallest thing can unsettle me and it can take hours or days to come back to myself. When I was diagnosed with ASD, someone described this really well to me: where neurotypical brains can filter out information that isn’t relevant (not ignoring it but not consciously processing it), neuroatypical brains can’t, so all the information comes in at the same volume and overwhelms the brain.
I struggle a lot with noise. Loud, sudden noises, like a slamming door or a fire alarm are very upsetting. It’s like they’re inside my body, inside my head, and before long, I can’t think and my anxiety overwhelms me. If it ends quickly, I can slowly force it back until I can function again but if it continues, it can lead to a meltdown where I lose all control of my emotions and thinking. It’s awful.
When it comes to studying or writing (although not songwriting), I need some background noise, almost to fill the space around me and in my brain. I often refer to the earlier example of information coming in through every channel: if I listen to something familiar, like a well watched TV show or audiobook, it’s like I’m filling some of those channels with something that I don’t need to process because I’ve already processed it, leaving me with only the channels I need to work on whatever it is I’m working on. Having said that, if there are too many different sounds going on, I start to get overwhelmed. It’s like my brain can’t balance them correctly, focussing on one too much and not hearing the others and so on. As you can imagine, that can make playing music quite difficult. I’m finally getting into the habit of carrying earplugs around but that has issues of it’s own: I find the sensation of essentially blocking my ears a difficult one, plus they’re pretty uncomfortable.
I’d never really thought of myself as being sensitive when it comes to touch but the more I think about it, the more experiences come to mind. I’m pretty specific about the fabrics I can wear and there aren’t many things I can put on my skin. It doesn’t take much before it feels unclean and once that feeling sets in, I can’t shake it. It’s horrible. There have been a few days where even multiple showers won’t fix it. I’ve also had some pretty bad reactions to various soaps and make up products, even those labelled as suitable for sensitive skin. The most dramatic example of this was when I was given perfume for my birthday. I love the smell of it but wearing it causes this weird reaction: my eyes water, my nose itches, my throat hurts, and so on. The worst part is how badly it irritates my lips: the skin burns and splits and it can take days to heal. And I don’t even have to be wearing the perfume to have that reaction; I only have to be wearing something I once wore with the perfume. Washing and airing the clothes hasn’t seemed to help much but I’m holding out hope that it will eventually fade.
My relationship with food needs it’s own post (I’ll get there, I promise!) but I think it’s important to mention in this context. I am really, really sensitive when it comes to food, so much so that I can only handle pretty bland stuff. This used to be a big problem because my family is pretty adventurous when it comes to trying different recipes and that often caused stress and anxiety all around. I got labelled as a picky eater and the most common response was to push me to eat the things I didn’t like, assuming that the experience would get better. But it didn’t; I just got more and more anxious around food. But since the diagnosis, it’s been easier. Well, easier to manage. It’s something that people can understand and that has really lessened the pressure on me. Now, the people around me let me decide what I can and can’t handle. I struggle with both texture and with taste and that can make some food impossible to eat. I get so overwhelmed by all the flavours that I can’t taste any of them individually. It’s like throwing a load of different coloured paints together: you don’t see all the different colours, you just get one new colour and it often isn’t a nice one. And that links into being really sensitive to smell. Something that those around me can’t smell can overwhelm me like a fog. It gets into my throat and my eyes. I won’t be able to focus and often have to leave the vicinity.
There are other things that overload my brain and while they aren’t exactly to do with my senses, they feel pretty similar. I guess they’re based on intuition and it seems that my intuition can be as amplified as my other senses.
Being in a crowd of people also overwhelms me emotionally. I get overloaded with how everyone has a name, a favourite colour, family, friends (who all have names and favourite colours), foods they hate, superstitions, dates they always remember, phone numbers they always forget, movies they quote, and so on and so on and so on. I get overwhelmed by how much is in everyone’s lives and I end up feeling like I’m being crushed by the weight of that. I feel like I can’t breathe. Some days I don’t feel it so strongly but on the days where I feel really fragile, like I don’t have any skin, it’s very, very stressful.
Another thing that needs it’s own post is my reaction to other people’s emotions. I feel like a lightning rod for them, especially the strong ones. I want to write more about this at some point but again, it’s relevant here. When I’m around anyone feeling a strong emotion, I start to feel it too. Most commonly I feel other people’s grief. And there’s always guilt mixed in: they’re not my emotions so I shouldn’t be feeling them. But I can’t help it. And it doesn’t take long for me to feel overwhelmed by all of that.
All of these things become exponentially worse when I’m stressed or anxious which, of course, is when I feel least able to cope with it. I don’t know if it’s something I can change, or whether my brain is wired this way, making everything so intense. Maybe it’s both. Maybe it’s neither.
Finding Hope 