Finding HopeMoving 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.
To Gig Or Not To Gig
Posted on February 17, 2018
What with the medication and the side effects and the day-to-day consequences of my specific Venn diagram of issues, I have been feeling incredibly unwell over the last several months. It’s been really tough: I’ve been dealing with nausea, dizziness, weakness, shortness of breath, shakiness, and so on. Having spent so much time and effort convincing people that a mental illness is actually an illness, that it isn’t less important just because the symptoms are inside your head, I think it’s easy to forget that these problems also have physical symptoms. I’m guilty of it too and I’m not very good at accepting that reality. But I’ve had to of late. Or, at the very least, try not to give myself such a hard time over it.
But this week I had my first gig in a really long time and I was going to do it, come hell or high water. The hardest thing has been not being able to do the things I love the most, namely singing and songwriting. That makes me a kind of stir crazy that I’m not sure I can put into words. So I did my absolute best to make sure I was ready, in both the health and music sense, and I thought I’d share some of the things I did in case they’re useful to anyone else.
Make sure your expectations are realistic – In the last six months, I’ve been offered a couple of gigs that I knew I just couldn’t do, regardless of how much I wanted to do them. I just wasn’t well enough. But this one was perfect: a short set, a relaxed atmosphere, lovely and supportive people… It was a really good opportunity to do this thing that I love so much without too great a cost to myself.
If it feels right, let those in charge know – I don’t think this is always necessary but when you know it could affect your performance, it can be a good move. It’s my default position to be open and honest and because I write songs about my experiences with mental health and Autism, they find out soon enough anyway but I’m also aware that people can jump to incorrect conclusions when they hear the word ‘Autism.’ So there are pros and cons but it’s something to consider.
Practice in small doses – There’s no getting away from the fact that you need to practice to be ready to perform well at anything. But it doesn’t have to be a huge, daunting black cloud that swallows up your day. I hadn’t been doing much consistent practice because I just felt so awful but I managed to build in fifteen minutes a day. It felt pathetic given that I used to be able to sing and play for hours but I’m trying to just acknowledge the thought and then put it aside. Even fifteen minutes was leaving me shaky but it gave me back some of my confidence and even though I don’t have another gig for a while, I am going to try and keep to this. It gives me more than it takes away.
Physically prepare your body – Make sure you’ve slept enough, eaten enough, and drunk enough water. These can be hard; I’ve struggled with all of them. But try to remember why you’re forcing yourself through it and do your best. It puts you in the best possible position to perform well which is, after all, the goal. Hopefully that motivation is enough.
Do whatever it is that gives you a boost and if you can’t do that, avoid the things that bring you down – I usually listen to music to inspire and energize me before a gig. They’re not necessarily happy songs but they are all high energy or high intensity. That helps me get into the right mindset to perform and that usually overrides whatever I’m dealing with physically.
If you need to stop, stop – I’ve been to multiple gigs where acts have had to call it quits mid set because of a terrible cold or whatever and every single time, the only thing anyone says is how impressed they are that the person got as far as they did. That may not always be the case but would it be better to push through and end up face planting onto the floor when the dizziness turned into fainting? No, it would not. Do what you can for as long as you can and then gracefully retreat.
Now I can’t prove that these things helped but I know they didn’t hurt. The gig went really well and it felt so good to be performing again. A couple of days later and I’m still tired and shaky but if that’s the price, I’m more than happy to pay it. For the first time in weeks, I feel like I’m in sync with my life; my anxiety has dissipated and I actually feel calm. That’s not something I can say very often.
When You Feel ‘Too Much’
Posted on February 10, 2018
As I’ve said before, I struggle with how powerful my emotions can be. When I’m happy, I feel like every cell in my body is glowing; when I’m upset, it feels like my chest is collapsing; when I’m angry, I feel like I could destroy buildings, and when I love someone, if I could take on all their pain myself, I would do it in a heartbeat. These feelings can completely overwhelm me, making it impossible to think rationally and I’m often left absolutely exhausted afterwards. Occasions like these are closely linked with my autistic meltdowns but they also do occur separately. Over the last couple of years, I’ve gotten better at managing this so I thought I’d write down some of the ways I do this (of course there are still times when something emotionally difficult just comes out of nowhere but we can’t control everything so we work on the things we can).
Allow myself to feel everything – I think it’s so important to actively feel and process your emotions. Ignoring my emotions does me no good. So I let myself feel them and let them settle and usually then, I can feel what the right thing to do is.
Prepare for events I know will be emotional – When I know an event is going to be stressful or upsetting or emotional, I seriously think about how important it is that I attend. If I don’t need to go and I can see that it is going to negatively affect me, I do consider not going. There’s nothing wrong with protecting your mental and emotional health. If I either need to go or think it’s the right thing to go, I make sure that I’m prepared for it. I make sure I have everything I need, I plan the elements that I can (like travel arrangements) to minimise stress, and I do some of the other things on this list. I also factor in the number of people. Big crowds of people can really stress me out so it is something I consider when deciding whether or not to do something and then how I handle it.
Create a safety net – Again, when I know something (an event or period of time) is going to be stressful, I take certain precautions. I’ll arrange an escape plan ahead of time in case I need it or I’ll arrange to have someone I know with me. Most of the time, I’m fine but that’s usually because I know I’ve made these plans and so I’m not worrying about what will happen if something goes wrong.
Build in time to recover – I am easily exhausted, especially at the moment, so I allocate time before and after an event to make sure that I’m as rested as I can be before it and then to give me recovery time after. I struggle with the reality of this: I get very frustrated about tiring so quickly and wish I could jump from one event to another like many people I know can. But even when I’m raging and swearing about this, I do it because I know objectively that I need it.
Writing or journaling – I’ve written about this before but I’m such a believer in writing down your emotions. For me, it gives me somewhere to put them so I don’t have to carry them around with me. I can leave them where they are and move on. It also makes them more manageable because I’ve put words to them; they’re no longer an intangible mess overwhelming me.
Therapy – Talking about how you feel is invaluable and having someone who is professionally trained, someone outside of it all who can look at what’s happening objectively is even better. I’ve been going to therapy for three years now (three years today in fact!) and having that safe space where I can talk about anything is so important to me. I wouldn’t be where I am now without it. I might not be alive without it.
Specific amounts of medication – Certain medications I have taken have had a little leeway about them and my psychiatrist trusts me to use my judgement with them. For example, when I know I’m going to need as much energy as I can get or have really needed some sleep to recover from something, I have increased my sleeping medication temporarily to make sure that I sleep well. Of course, this is something you only do with the guidance of your healthcare professional.
It does still happen. I do still get completely overwhelmed by how I feel but I am better at managing it. I guess these things just make the experience easier on me and everyone else, and less stressful than they were before. Despite all of this though, the strength of my emotions is something I really value about myself. Everything matters. I care with everything in me. It’s hard but ultimately, I wouldn’t want to be any different. Life is bigger this way.
Backwards Binoculars
Posted on December 5, 2017
Over the years, I’ve had periods of feeling really far away. It often overlaps with my bouts of depression but sometimes it creeps in out of nowhere and I feel completely lost, untethered from everything around me. It fades in and out like a fog, sometimes with no warning and often there’s nothing I can do to dissipate it or avoid it. It can be really scary, especially when it first started to happen, but at the same time, it’s like I can’t really feel that fear or any of my emotions. I’ve described it in different ways but they all describe the same feeling: feeling completely disconnected from myself. But I thought I’d include a few of those descriptions because they give more of a sense of how it feels:
- It’s like looking backwards through binoculars so everything seems really far away when it’s actually close. Sometimes I can almost see the black tunnels that would be the inside of the binoculars. This is the way I usually describe it; I think it fits the best.
- I feel like I’m five miles back inside my head. I can’t reach anything or anyone and it feels like no one can hear me, the real me.
- It’s like watching everything happen and feeling like it would continue as normal if I wasn’t there, almost like people wouldn’t notice if I disappeared. They’ll keep talking, leaving spaces for me and responding to what I would’ve said if I was there.
- Similarly, it can feel like I’m invisible, like people will look right through me.
- It feels like I’m stuck behind glass, like there’s glass between me and everybody else. I am physically separated from everyone. This is another one of my ‘favourite’ ways to describe it.
- A variation of that is feeling like I’m wrapped in cling film: separated from everyone but also trapped. It makes me feel like I can’t breathe.
- I feel disconnected from my life, my body, like I’m in control but it’s not mine. I’m moving my limbs but they feel oddly numb, thick and heavy and clumsy.
- One of my earliest memories of this feeling is feeling like I was out of sync with everyone else. That’s a very lonely and uncomfortable feeling.
- Sometimes it feels like I’m underwater. It’s like I’m surrounded by something other than air and there’s more resistance when I try to move.
- The most recent description is that I feel like I’m sleepwalking and can’t wake up. This one overlaps with how I feel when I’m really depressed so it’s not the most reliable analogy, if that makes sense. It fits both.
To be completely honest, I’m not sure what causes it, given the overlap of the different mental health problems I struggle with. This is something I have a lot of anxiety about, not being able to pinpoint where individual problems come from. Everything’s connected to everything else. Everything influences everything. But from my own reading, it seems to be common in depression and in Borderline Personality Disorder. It’s often a coping mechanism for stress or overwhelming emotions. The Mind website has a great page about this. My experiences line up best with the description of ‘Depersonalisation’.
I still haven’t found anything that does much to help it but there are a few things that give me a few seconds of relief, of connection. Usually, it’s about tapping into my senses. That seems to bring me back to the world a little bit. So things like opening windows, sitting in the sun, touching leaves or flowers, stroking a pet, having a cold shower or holding something cold… they don’t fix it but they do have a positive effect. Even if it’s tiny, they do create small positive spikes in my mood. They’re like stars in a suffocatingly dark sky. With this, it’s more about getting through it than trying to fix it. It’s about creating one moment after another to carry you through to the other side.
I want to add that I’ve also used self harm to ‘wake myself up’ from this. I’m not advocating it; it’s dangerous and damaging and really difficult to get free of. But if nothing else, I’m honest and it has helped. When I’m in a really bad place, I don’t want to hear that I shouldn’t do it because it feels like the only thing that helps but when it’s not quite so bad, I try really hard to find other ways to cope. I try the things I’ve listed or I try to distract myself. I don’t want to get too far from the point of the post so I’ll come back to this in another post but I felt like I had to include it here.
Friends and family have asked me what they can do to help and if I’m honest, I don’t really know. It can be hard to think about that when I’m just trying to get through it. But I do want to help them help me. At some point, I will write more about this, but I do find it really helpful when the people around me let me set the pace and decide what I can and can’t manage. Sometimes a push is helpful but in this situation, it isn’t. A sense of control grounds me a little bit. Plus, there are some things that are just really hard to manage when you feel like you can’t connect to your emotions. For example, I find it really hard to write songs and be creative when I feel so disconnected from everything. So being able to (and feeling safe to) adapt my activities does help. And talking. Talking it through, figuring out solutions, letting off steam. That really helps.
A Fear of Fireworks
Posted on November 8, 2017
I hate Bonfire Night. I really, really hate it.
When I was fifteen, I was at the cinema with my two best friends. We were in the middle of a film when something brushed through my hair and landed between mine and my best friend’s feet. I don’t remember now if I knew it was a firework or whether my survival instinct just kicked in automatically because I was out of my seat in a split second. I tripped over a bag as I raced down the row and someone hauled me back up, dragging me with them. My memory of those few seconds is weird, almost as if belongs to somebody else.
But, fortunately for all of us, someone from the row in front of us had stamped out the firework before it had gone off (while threatening to cut the balls off the person who’d thrown it). The lights switched on and a cinema employee came running in to see what had happened. Someone had come up the back stairs, thrown a firework into the crowd, and then done a runner. It looked like someone had thrown a pebble into a pond, we’d all moved outwards, standing almost in a circle with the firework in the middle. There were offers of compensation and calling of ambulances but everyone was okay, apart from the shock of it. I don’t think it had really sunk in because they rewound the film and we sat through the rest of it, although the three of us held on tight to each other until the film ended. On the bus home, we all jumped every time someone hit the buzzer for the next stop.
I was freaked out but I didn’t really take it in until the next time I saw fireworks. I was with my family, we were a significant distance from where they were going off, but I went into a panic. I felt like my ribcage was shrinking or like my lungs were swelling and I couldn’t breathe. I wanted to run. I wanted to run until I physically couldn’t anymore. And after talking to my Mum about it, I realised where that feeling had come from. Worst-case scenario, that firework could’ve gone off in our faces. I don’t want to think about the consequences of that.
Over the years, I’ve avoided fireworks wherever possible. But I haven’t been able to block them out completely. Even when I’m curled up in my room, I can hear them. I don’t have quite the same dramatic response as I did but they’re still a source of anxiety. Every time I hear one go off, my stomach twists. I can’t relax; it’s like there’s a current running under my skin.
As much as I’d like to order the world to stop setting off fireworks, that’s just not possible. I can’t control that but there are some things I can control, things that make the experience a little bit easier:
- Create a calming environment – Fireworks going off outside my window is stressful enough without adding extra anxieties. So I try and remove the unnecessary ones and surround myself with safe things. For me, that’s familiar things. So on Bonfire Night this year, I took myself up to my room and curled up in bed with my cat and one of my favourite TV shows.
- Try to distract myself – Giving myself something to work on helps to shift the focus from my anxiety. Otherwise I’m just waiting for the next firework to go off, amping up my anxiety even more. What works depends on how anxious I am or how tired I am. Sometimes it needs to be something simple, like playing a game on my phone, something that doesn’t require a lot of brainpower. Sometimes it needs to be something that takes up every inch of my brain, like playing the piano.
- Making sure I have support – While there’s nothing anyone can actually do to help, having people checking in on me and making sure I’m okay (or at least not completely losing my shit) does make me feel a bit better. Or a little bit less panicked. And I’ll take what I can get. I think it just brings me back to Earth a bit when my anxiety starts to spiral out of control.
None of these things fix the problem or remove my anxiety but as I’ve written before, sometimes that’s not possible. Sometimes all you can do is get through it and try not to make it worse. This anxiety has gotten better over time; the sound of fireworks no longer sends me into a panic attack. Maybe one day I won’t even blink when I hear one go off. Maybe I won’t even notice it. But until that day, I’m just trying to make it through with as little anxiety as possible.
13 Things That Don’t Make My Depression Worse
Posted on September 16, 2017
I’ve been struggling with depression on and off for about five years now and that’s added up to a lot of bad days. Over that time, I’ve tried a lot of things and talked to a lot of people. And the best advice I’ve ever been given is ‘don’t make it worse’. Well, step number one is ‘don’t make it worse’, step number two is ‘try to make it better’ and that always rang true with me. In my opinion, the most important thing about coping during periods of depression is getting through it.
You can worry about making things better when you’re feeling okay but when you’re feeling awful, that’s too big an ask. These things on this list aren’t life changing. They’re not going to banish the depression or quiet the anxiety. But they have helped me to feel better, even if it’s just the smallest amount. And that’s where you have to start. So I thought I’d list them here. Maybe they’ll help some of you too.
1. Journaling – I’m a huge advocate of writing stuff down, for two reasons. Firstly, I think it really helps with the processing of emotions. A lot of the time, I feel like my thoughts move very quickly and to write them out, I have to really slow down. That allows me to make different connections, explore the depth of the emotion, and really think things through. I find that so, so helpful. And the second reason is that it allows me to let go of everything that’s happening to me. I’ve been keeping diaries for a long time and this is something that has really helped me. All of these big emotions make my head feel very full and it can feel hard to breathe but when I write it all out, it’s like I can let it all go. I compare it to backing up my hard drive: I know it’s safe and I don’t have to actively hold onto it or worry about forgetting things, something that often feels like it takes up a lot of energy.
2. Looking at the sky – I’m serious. There’s a little park across the street from my house and recently, I’ve found myself heading over there in the early evening (when it’s empty and quiet) and taking a moment to lie in the grass and look at the sky. There’s something about it that really calms me. I can feel my ribcage opening up and it gets easier to breathe. It kind of feels like, with the sky above me, there’s finally enough space for my emotions to leave my body. I don’t know if this works for anyone else but humour me. Try it and see how you feel.
3. Playing with or stroking an animal – There’s something about animals that can be incredibly calming. They’re so mindful, so completely present in what they’re doing. Spending time with my dog or my cat is something that’s really helped me over the last few years. Focussing on them, for me at least, makes everything fade into the background for a little while.
4. Washing your face – Simple but true. Sometimes, washing my face just feels like a fresh start.
5. Buy something (cheap) online – I say cheap because I know money is a cause of stress for a lot of us, but when you’re having a bad day, having something to look forward to is important. And sometimes there’s nothing in the diary so you have to create it yourself, even if it’s something simple, like a pretty notebook. Knowing that something nice is going to arrive in a couple of days can help you keep going.
6. Doing something that takes all of your concentration – If you’re feeling up to it, doing something that takes great concentration is really good because it prevents you from thinking too much and ending up in a spiral of negative thoughts. My preferences are playing the piano or doing origami.
7. Doing something you don’t feel pressured to be good at – A while ago, a friend suggested trying something like painting because it was something I’d never really done and therefore it didn’t matter if I wasn’t any good at it. It was a good idea in theory but in practice, all I could focus on was how I couldn’t make it look how I wanted it to look. To me, it was bad. So that just made me feel worse. But when I picked up poetry, I discovered I didn’t mind what the outcome was. I just did it because I enjoyed it and I think that’s because it was linked to something I was already skilled at. I’ve been writing in some form or another for years so while this form of it was new, the basic skills weren’t. It was already something I was comfortable with. So, if you’ve had the same problem, perhaps try something similar to a skill you already have: a different art form, a different sport, even a different type of puzzle. I’ve found that doing something purely for enjoyment can help, giving you a sense of accomplishment at a time when you may not feel very accomplished.
8. Having fresh flowers around – I don’t know about the logic of this one but there’s something about having fresh flowers in my room that just gives me a little pick-me-up.
9. Watching a movie or TV show – Sometimes you just need a break from your own life and watching (or rewatching!) a TV show or movie and getting really involved with characters can do just that.
10. Take a break from responsibilities – This is obviously not a long-term strategy but giving yourself a period of time where you aren’t required to do anything can recharge you. For a little bit, you can avoid things that make you feel invalidated and not feel guilty about the things you should be doing. That takes up a lot of energy and having a break from that just allows you to recover some energy so that you feel more capable when it’s time to start again.
11. Organise something – Putting things in their proper place can help give you a sense of control in a time you where everything may feel completely out of your control. I actually find this quite helpful when I have to make big decisions. Jumping straight to the big things can send me into a panic so I kind of warm up by organising my computer desktop, putting everything in the correct files.
12. Going to concerts – This is obviously a harder one to orchestrate because you can’t just conjure up a concert when you’re feeling depressed (although looking forward to one can be helpful too). Concerts can be difficult (especially if you struggle with anxiety as well as depression, like me) but in my experience, there’s something about live music and that group emotion that can make you feel very alive. And you’re completely focussed on that moment in time. Emotions feel more vibrant, after feeling very faded by depression and they stay with you, allowing you to relive them afterwards. There’s something very special about going to concerts, especially when it’s an artist or band that mean a lot to you, and I’ve found those experiences can really lift me out of my depression, even if it’s only for a little while.
13. Changing your bed sheets – I don’t know about you, but there’s something about sleeping on clean sheets that just makes me feel better. If I’m in a bad place, I need someone to help me do it but it always improves my mood.
So that’s my list of things that don’t make my depression worse. Hopefully this has helped or given you some ideas for when you’re feeling really low. And if you have any suggestions, leave a comment below!
