Living with Autism During a Pandemic

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

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

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

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

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

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

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

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

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

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

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

I Rediscovered Swimming

One of the most common pieces of advice with anything mental health or mental illness related is to exercise. And while that’s not bad advice, it’s not necessarily good advice in the practical sense. It’s about as helpful as saying, ‘eat healthy’ or ‘get enough sleep.’ It’s something that has to be tailored to you. Specific types of exercise will help where others may make you feel worse. So you need to find the one for you.

For example, I hate running. I would love to love it but I hate it. I find it at best uncomfortable and at worst painful: it’s like my bones are rattling inside my body. I’ve heard this from others with Autism but I don’t know if it’s specific to that or whether it’s a coincidence. But anyway, running is not the thing for me. Swimming however…

I have always loved to swim. I love the feeling of moving through water and when I was a kid, I loved the silence that comes from being underwater. I would’ve given anything to be able to breathe underwater so that I could stay in that silence. That’s pretty ironic given that I would grow up to develop anxiety that is triggered by a lack of noise and distraction.

I got back into swimming a couple of months ago. At the beginning, my anxiety was so bad that I couldn’t even swim: the lack of stimulation for my brain meant that I just spiralled and my anxiety became completely overwhelming. So me and my Mum would walk and talk, planning the day or talking through whatever thing was on my mind that morning. Eventually my anxiety mutated into a different state and I was able to swim. It’s had such an impact on my life so I really wanted to write about it.

Swimming pools have the potential to be very difficult for me, from a sensory perspective. When it’s busy, the sound bounces around and around, making it one big fog of noise, which makes me very anxious. And the fact that I’m so short sighted I can barely see without my glasses makes that anxiety even worse: I can’t see anything and the sound feels like it’s coming from everywhere and that causes me paralyzing anxiety. It’s how I imagine it would feel to be on a carousel but if the carousel was going at ten times the normal speed. It’s scary. The best times to get in a quiet swim seem to be first thing in the morning and last thing at night. I’ve been sticking to the morning; it makes for a more productive day for me.

Knowing that this is the time that allows for the best swimming experience, I’ve been getting up early and getting to the gym for about seven forty five (sometimes I even get the pool to myself, which is glorious). And knowing that I have to get up that early, I’m going to bed at a sensible time, rather than accidentally staying up until three in the morning. So a routine sort of formed by accident and that has been so good for me. My relationship with sleep has never been so good.

Exercise has always been difficult for me given my historic struggle with energy but also because ‘weight bearing’ exercise often feels very jarring. As I’ve already said, it makes me feel like my bones are rattling inside my body and each impact makes it worse. Sometimes it’s not that bad and I can be distracted by whatever I’m doing but sometimes it can actually be painful. So swimming is perfect. It takes that whole aspect out of the equation and makes exercise actually enjoyable. It reminds me of my arthritic dog: he goes for hydrotherapy and as soon as he’s in the water, chasing tennis balls, he’s like a puppy again. He loves it and I can totally relate.

The best thing about swimming is that it’s something that makes sense and that’s something I really need at the moment. The world feels hard and unfair and this is something that I can control. The more I swim, the stronger I get. I can see the results. I’ve been swimming most days for the last three months and I see my own progress: I’m swimming further; I’m swimming faster; I can see my body changing. It makes sense. That grounds me.

The one thing I do have to be careful of is my tendency to obsess: about the number of laps, getting to the next ten, getting to a hundred… Once it’s in my head that I ‘have’ to get to a particular number, there’s not much I can do to change my own mind and it causes me serious anxiety if I don’t reach the number I’ve ‘decided on.’ So I have to be aware of that. Sometimes I can avoid it by distracting myself or by deciding on exactly how long I’m going to spend in the pool but sometimes I just have to manage it. Sometimes that’s all you can do.

But overall, rediscovering swimming has been one of the major highlights of this year. It’s helped my physical health and my mental health, as well as my day to day life. So I feel very grateful to have found it again.

And since I can’t take my phone into the pool with me, here’s a photo of my dog, enjoying his fortnightly swim.

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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.)

When Things Get Really Bad

Since I last posted on here, literally all I’ve done is survive.

After putting up last week’s post, I went to therapy, which just about wrecked me. It was really hard going. I don’t want to get too into what we talked about and what I’m currently struggling with because I’m really struggling with it and I’m still figuring out how to put all of it into words. But I think the gist of it is important to include: I’m struggling with ‘feeling’ autistic, like I’m never going to be able to function the same way as everyone else. I don’t know how to cope with a thought like that. And that has really triggered my depression, in a massive way. I feel like I say this every time, but it feels like the worst place I’ve ever been; but maybe I say it every time because each time takes more out of me.

It looks so small and simple when I write it out like that. But in reality it’s powerful enough to overwhelm everything.

I left therapy feeling absolutely drained. I didn’t know how I was going to get through the day, get through the week to the next session. But somehow I did, one minute at a time. This week has been about survival because sometimes that’s all you can manage – I feel like I’m standing on the very edge of the black hole that is my depression and it’s taking all of my focus to not get pulled in. So while I feel like I’ve achieved nothing, I’ve actually achieved everything. At least that’s what I’m trying to tell myself.

So I thought I’d write down what I do when I’m in this place, where the only thing I can do is survive:

Each day, I get up at seven and go to the gym to swim for thirty minutes. I always want to do more but through trial and error (usually error), I’ve found that this is the amount I can do and still kind of function. If I push on, I end up falling asleep during the day and screwing up my sleeping pattern or I end up in a place where everything makes me cry. So I’m trying to be sensible and build it up slowly.

I get home and head for the living room. I curl up on the sofa, turn on the TV and continue the rewatch of whatever TV show I’m watching (currently The Mentalist). I’m not really watching; it’s more about having familiar, comforting background noise so that the scary thoughts can’t get in. Then I find something that will distract me from all the overwhelmingly difficult things. The activities that work best for me are playing piano and printing, cutting, and sticking pictures from Tumblr into notebooks. And sometimes reading a book works, if I have the concentration to actually read.

And I use those things to get me through the day. I spend time with the animals in my house. I’m lucky enough to have a Mum who works from home so that I can have someone with me when I need to have someone with me. I try to eat well.

And then I go to bed not too late and start all over again.

It’s a hard thing to get my head around and I’m aware that I’m very hard on myself. Because even though I genuinely believe that sometimes all you can do is survive, I find myself getting desperately upset that I’m ‘not doing anything.’ I feel like I’m not trying hard enough – in my mental health, in my music, in my life – and that I should ‘push through it.’ And it’s so hard to think that when I feel so overwhelmed by my depression.

And, outside all of that stuff, someone I care about is in hospital and no one really knows what the outcome is going to be. So I’m trying to manage all the anxiety around that too but it’s like trying to stand on ground that’s constantly shifting.

I think that, if I keep writing, I’m going to end up going in circles: ‘it’s okay to focus on surviving’ to ‘I should be trying harder’ and back to ‘it’s okay to focus on surviving’ and round and round and round. So I’m going to stop here. But regardless of all my anxieties and negative thoughts, I know that it’s okay to focus on surviving. And I hope you know that too.

Taking A Self Care Day

Within an hour or so of waking up, I knew I needed a self care day.

I’d started the day at the gym, swimming in the outdoor pool. It felt good to do but by the time I got out, I was feeling really anxious and fragile. I thought about it and talked to my Mum and decided that I needed a day to look after myself. I needed a little break from life, from all the big, hard stuff.

It was never going to be a particularly busy day. I had planned to do a couple of things in town but there was nothing urgent and I felt really low on social energy. Sometimes it’s worth pushing through, worth practicing opposite action, but sometimes it just makes more sense to focus your energies elsewhere. So I cancelled that stuff and headed home.

On my way, I popped into the supermarket and bought some treats for myself. I’ve been pretty good about eating healthily recently, which I’m really proud of given my issues with food. But we all need unhealthy stuff sometimes and that day was one of those days. I also bought some new notebooks, which always cheers me up.

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Once I was home, I headed to the living room and drew the curtains. I’ve never had white curtains before but I absolutely love it: you can draw the curtains and shut out the world but there’s still good natural light. It’s a little bubble in which I feel safe. I changed into my favourite T-shirt, put on a Harry Potter film for background noise, and got to work on the emails I’ve been avoiding. I was avoiding them because they were stressful but ignoring them only created more stress so I needed to address that. I just needed the right environment – a calm environment – to feel able to do that. And I felt SO much better afterwards. I also got caught up with my diary and my photo albums, both of which are my self care staples.

Another thing I was really worried about was my cat. She was spayed not that long ago and I just had this anxiety that the wound wasn’t healing properly. My Mum was taking our dog to the vet so I asked her to take Lucy with her. I have serious anxiety about going to the vet (probably from when we had to have my previous cat put down) which does need addressing but that wasn’t going to happen in a day and I didn’t want Lucy to suffer because of it. The vet checked her out and gave her a clean bill of health, much to my relief.

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It’s also a really good time to try and practice good habits, healthy habits. I’m trying to build several things into my daily routine (not that I really have a daily routine), including drinking the recommended amount of water, practicing my instruments, and making sure I do something creative. Without a day to stop and take stock of my life, it’s easy to get into a really frenetic cycle that just gets faster and faster until I inevitably crash. So, for me, it’s important to stop.

So there you have it. This is what I do in a self care day. Obviously it’s different each time because of what’s happening in my life but, for me, a self care day involves several things:

  • Calming my environment
  • Addressing anxieties
  • Assessing my routine and my habits
  • Feeling safe and comfortable

Sometimes that means curling up in bed with my cats and my favourite TV show and sometimes it’s replying to all my emails and so on that have built up. Sometimes it’s like an aesthetic instagram post with fluffy socks and candles and sometimes it’s ugly with tears and frustration. We all do it differently and we all do it differently each time. Self care is a very small title for a very big idea.

Travelling As An Autistic Person

Travelling is hard work for everybody. It’s exhausting and stressful and frustrating. But add in sensory issues or anxiety or whatever it is you struggle with and it can be a traumatic experience. Since we are now in the summer holidays and prime travelling time, I thought I’d put together some things that I found helpful to do as an autistic person who struggles with anxiety. I would like to point out (again) that there is a maddening lack of resources (and even simple testimony) for or from the point of view of autistic people. I spent hours searching for something but there was next to nothing; all the advice was for parents of young autistic children. Of course that information is important but it’s very demoralising to an autistic adult – essentially being compared to a child – especially one who was diagnosed late and has had to work so hard, often unaided, to manage their difficulties.

PLAN AHEAD – I know, this is my advice for everything, but it really does help. Struggling with unexpected change is a common trait in Autism and while planning can’t prevent all of those changes, it can make a huge difference. It can also give you a confidence boost, knowing that your actions have prevented a certain amount of anxiety.

SPEAK TO A TRAVEL AGENT – Being able to hand some of the responsibility off to someone else can be really helpful, especially if you have limited energy. You have to prioritise the tasks and if there are people who can help, that is a valuable resource. These people are also more likely to know the ins and outs of booking flights and accommodations etc and will therefore be more equipped to help you get what you need and want to get the most out of your trip.

CHOOSE YOUR ACCOMODATION CAREFULLY – Having somewhere where you can have time out and recharge is so important when travelling. We all have different sensory needs and different things we can tolerate so choosing a place to stay is really important. For example, staying with other people (people I don’t know) causes me a lot of anxiety so when we look through Airbnb, we look at places that allow us to be the sole inhabitants. It won’t be the same for everyone but if you can identify what you need, you can hopefully find somewhere to stay that can be a restful place rather than a stressful one.

WRITE A LIST OF EVERYTHING YOU’LL NEED AND HAVE SOMEONE CHECK IT – Having a list makes packing so much easier and having someone check it for you just reduces the chances of making a stupid mistake like forgetting your pyjamas. Because that really isn’t something you need to deal with when you arrive wherever you’re going. Also make sure that you’ve got any medications or medical equipment that you need because those can be particularly difficult to get hold of, especially if you’re in another country.

PACK AN EMERGENCY KIT IN YOUR CARRY ON BAGGAGE – On the off chance that your bags get lost along the way, pack a change of clothes, some medication, etc in your carry on bag so that you can at least get up the next day and work out a solution.

BRING YOUR OWN FOOD – You’d need to check with your airline but there are certain foods that you can take in your suitcase that won’t cause you any problems while travelling. That means that, at the very least, you’ll have something to eat when you get to your destination. But in my case, it gave me a staple food that I knew I could eat in case I couldn’t find anything I could tolerate. It took away some of the anxiety, for which I was grateful.

PREPARE SPECIFICALLY FOR THE FLIGHT – Apparently, we’re flying in this hypothetical. Many people have fears associated with flying and while I don’t have any magic words of wisdom there, there are a couple of tricks to make it slightly less difficult, especially if you have sensory issues. Take sweets to suck on and relieve the pressure in your ears. Wearing a mask over your face can help if you’re worried about bad reactions to everyone’s germs in one confined space, as well as chemicals from perfumes etc. I’ve also found that a playlist of familiar music helps with the constant noise of flying. And wearing comfortable clothes: you’re most likely gonna look awful when you get there anyway so why bother with anything more than a T-shirt and leggings.

BUILD IN TIME OUT AND DON’T FEEL GUILTY FOR IT – Easier said than done, I know but burning yourself out in the first couple of days doesn’t make for a good trip. So try to take breaks between things and listen to your body: if you need to rest, rest. It will make the whole trip more enjoyable and worthwhile if you do.

As of now, I think that’s all I’ve got. But if you guys have any tips that you’ve found helpful, please let me know!

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.