sensory overload – Our Happy Notes

Guide for Autistic Travellers

Posted on November 11, 2022November 10, 2022 by Millie :)

This summer I embarked on a two month solo trip around Europe as a female identifying autistic teenager – and it was wonderful. It was made even more wonderful by the fact that some of it was awful (I see the bad moments as adding more depth to the whole experience). So I thought that from my experience I would make a little guide to travelling for my fellow autistic people! Firstly a little disclaimer – this post is based on my experience travelling in Europe during the summer months; there may be information that does not apply to travelling at different times or different areas of the world. Also not every autistic person’s experience of the world will align with mine, so please find the information you find relevant and feel free to ignore the rest. With that being said, here’s my tips:

In London, ready to embark on the journey

Consider Your Companions

Personally, I find social interaction to be draining, especially when in unfamiliar situations. I am also pretty independent, so for me doing the majority of this trip on my own was the best option as it meant I could go at my own pace and organise my own days without having to balance that with someone else. However, I did have my moments of overwhelm and difficulties so it was really important that I had people (notably my parents and sponsor) on standby who I could call to help me in those moments.

There is a lot to think about when travelling and a lot of new environments to deal with. It’s worth considering whether you think you will be able to handle this on your own or whether you would get more out of the experience by having someone with you to help manage this. If you do need someone, remember that is totally acceptable! It’s about getting the best experience for you. However I would recommend thinking carefully about who you bring. It needs to be someone you are comfortable being around for long periods of time and who you are comfortable expressing emotions around (as there will almost certainly be emotional moments along the way).

If you are like me and think that you would prefer to travel alone, but also want to have some shared memories along the way, you could always invite a friend or family member to come and join you at one location. This is what I did and it worked really well. It meant I got to explore a few places with someone, but our time together was limited and we didn’t have to manage lots of travelling (and so scheduling) together. It made those experiences feel more special for me personally.

Do whatever feels right for you – but take some time to consider this in particular as it’s one of the most impactful parts of travelling.

Sensory Considerations

Something I underestimated before this trip was the variation of sensory experiences in different places. It is completely manageable, but it might have been helpful for me to be more aware of it before. Firstly, travelling in the summer months meant it was often really sunny. Before this trip I actually didn’t think I was an autistic person that was affected by light very much – but I soon realised I most definitely was (and that’s a really helpful thing to know now!). I think because I was in a new place, my sensory reactions were sometimes more sensitive, so that’s why I’m really glad I got a pair of good sunglasses before I went. I wore them everywhere and they made everything so much more pleasant. So I would recommend investing in a pair of good sunglasses (and if you wear prescription, possibly getting a back up pair) before going travelling.

Next up is smells – different cities have different smells. This was both very surprising and not surprising at all. I got more used to it as the trip progressed but in the first few cities it was definitely on my mind a lot. If you are someone that gets affected by smells I would recommend bringing some essential oils you like to smell or even getting a nose plug of some kind for travelling as it’s a part of new cities that can’t really be avoided.

Likewise, every city had different sounds. I had my airpods with me the whole time and had a podcast or music playing every time I was out and about to help me manage this. I actually spent a while beating myself up over this, thinking I wasn’t being ‘present’ enough simply because I couldn’t live up to the idea that in order to be present in a museum, for example, I had to stand there in silence while footsteps echoed around me. So my note here is for the autistic people who need controlled sound playing to engage with the world – that is totally ok! Whatever you need to make the most of your experience is totally ok! I also had my loop earplugs with me for when I wanted to take in some of the city noise but not be overwhelmed. This kind of earplug is really good because you can get different kinds to filter out different levels of sound to suit you. Considering bring ear defenders could also be really useful for dealing with sound.

Next for sensory issues is a bit of an odd one – pillows. I stayed in a lot of different hotels and hostels and I can say that without a doubt the thing that varies most between them all was their pillows. I had no idea this would affect me, but it did. So if you think different kinds, shapes and heights of pillows could be weird for you, please consider bringing your own. I packed really lightly but if I had to recommend one larger thing to bring it would be a pillow; even a blow up one that you are used to the feeling of.

Finally, consider the clothes you bring. I know personally I only really wear clothes that have a comfortable texture and feel for me. However when I was travelling I found it even more important than usual that I was wearing comfortable clothes, especially in the heat. I also found that with so much other information and choices in a day, choosing an outfit was much easier when the majority were variations of the same outfit. For example – I had four different tops that were all the same but different colours to match with four different pairs of cycling shorts that were all the same but different colours. I just found that really helpful.

Accommodation Choices

It’s really tempting while travelling to choose a shared room in a hostel because it’s the cheapest option, or because you feel like that’s what you should be doing for the ‘travelling experience’. This is your reminder to always, always choose what’s best for you and not what’s the easiest option or what you feel you’re meant to do. For the majority of my trip I had my own room and it was 100% the right option for me. I needed that space that I could retreat to and reflect in and not feel like I was ‘on’ all the time. I got single rooms in hotels, air b&b etc mainly because this was often a lot cheaper than getting a single room in a hostel. However if you want to also have the option of more social events and interaction then getting a single room in a hostel would be a great compromise if you’re someone like me that also needs their own space!

I did stay in hostels for a few nights, and I’m glad to have had that experience, but I found it much more draining so I’m also glad I didn’t do it for the whole trip, and had my own room immediately afterwards. It was 100% worth the little bit of extra money to have my own room. Whatever you decide I’d just recommend you look into it carefully, read all the reviews, and be clear on what you need.

Next up on my accomodation advice is to book in advance. It might sound fun being spontaneous and just booking in when you get somewhere, but if you are travelling in summer like I was this is not only expensive but can be nerve wracking when everywhere is sold out. If you have your accommodation booked in advance it’s just one less thing you have to think about at the time, which might not seem like a big deal right now, but when you’re faced with travel tiredness and some other issue to solve, it’s a huge relief to have the basics sorted. I used booking.com’s app for nearly all my bookings so they were all in one place and easy to sort through; plus it meant I only had to get used to one interface.

Finally, in terms of food – if you’re worried about the unpredictability of food at all then I would recommend finding places to stay that have facilities for you to make your own food. This also helps save money when you’re on a budget.

Where To Visit

Again, when choosing where to visit (both in terms of places and what to do in those places) don’t be swayed by what you feel you should be doing. I didn’t go to a single club or bar while travelling and I do not feel like I missed out at all, because I was happy with what I was doing.

In terms of places I personally found Venice very overwhelming in the summer with the large volume of people in small streets. Turin on the other hand was a beautiful, small Italian city that was quiet in the summer. Look into what kind of vibe you want and what places are like at particular times of the year (I much prefer visiting Rome in the winter for example). Guide books and the many travel blogs online will often be able to give you recommendations for quieter or less busy places to visit as well if too many people are overwhelming (Teufelsburg in Berlin was truly amazing). Basically – travelling is a personal thing. Make personal choices.

I found travel days to be the most draining, and although easier because it was planned, there was a level of getting used to each place once I arrived. If you think having to adjust to several different places in a short period would mean that you enjoyed them less, then consider staying in each place for more extended periods of time. That way you can settle in and explore each location at your own pace.

Finally, if you have a diagnosis and are in receipt of any official disability support (DSA, PIP etc) then take proof of this with you because loads of attractions give reduced or even free entry! I saved €70 in Barcelona in a single day so it really is worth it. You can also get someone else free with you at a lot of places! Disneyland in particular had amazing disability support for free – I got a pass that meant I could skip queues with up to 4 people and had my own place to stand for the parades. It really meant I could enjoy the day. But it’s not just big attractions like that – churches, museums, tours etc often have disability reductions.

General Advice

Bring a portable charger and keep it charged
Have emergency cash
Have a small across body bag to put valuables in
Get medical insurance – GET MEDICAL INSURANCE
There are shops everywhere – you can buy what you need, so don’t panic if you forget anything
Have key contacts and information written down, including your hotel addresses and a photocopy of your ID kept separate to the original
Print off a card with ‘i’m autistic’ in different languages if this makes you feel better
Have more underwear than you think you need
Bring a water bottle and remember to stay hydrated – it’s often the basic stuff we forget first
Take breaks if you need to and only do as much as you want to. You got this!!

If you have any questions or extra tips please let me know below! Love and support to you all xx

Advocacy, Managing Mental Health, Mental Health, Personal Growth

Journey Through Panic Attacks

Posted on July 3, 2022 by Millie :)

The first time I experienced a panic attack I was 11 years old. I had come home early from school that day with a headache and some other physical symptoms I now know were anxiety, and I had gone upstairs to have a nap before dinner. My mum came to wake me up when it was time to eat, but I must have been in the wrong phase of my sleep cycle because I awoke disoriented, thinking it was the morning. We’ve all been there when we wake up not quite sure what’s going on. So I thought it was the morning, and when my mum told me it was time to eat I responded asking about breakfast. There was some confused back and forth with my mum trying to convince me it was in fact dinner time, and still the day before, and I suddenly spiralled into my first panic attack. I don’t remember a whole lot of the details while it was happening, but I do remember how terrifying it was. I remember feeling like I couldn’t breathe; I simply could not get the air into my lungs. I felt faint, and sick, I thought my legs couldn’t hold me up. I don’t know if I had the thought that can come alongside panic attacks where you think you’re going to die, but I knew something was very, very wrong; I definitely thought I was going to faint. Somehow I ended up at the bottom of the stairs, gasping for air and sipping water out of a bottle cap (I think that was the only way I could manage to do it?) as it subsided, and I can still recall the exhaustion after that first one and how foreign it felt. My mum suggested it had been a panic attack, and at that point I didn’t know what that meant. I had no idea they would become such a huge part of my life.

I have had many panic attacks since this day. I’ve also had some anxiety attacks, which are more prolonged and less intense, and I experience sensory overload too as an autistic young person. Sometimes sensory overload meltdowns and panic attacks can be hard for me to distinguish, and sometimes they overlap or morph into the other, but it’s helpful sometimes to figure out which is which as it can aid in the recovery process both long and short term – for example in a panic attack changing my jumper probably isn’t going to help and may not even be a possibility, but with sensory overload changing the material of my clothing or my environment may help it to subside or avoid it altogether when I feel it building. This year I have felt the strongest mentally overall that I have in a very long time, but I still have panic attacks. Some months I have none; others I have many. For example in May I had seven.

It’s important to note that while I find the label panic attacks useful, it is a pathologised word. That means there is a certain medical connotation attached to it. However panic attacks are a total overload of our nervous systems; an explosion of tension and anxiety. We cannot talk about expressions of mental distress without recognising that they are often responses to a traumatic and stressful world, whether immediate results of a specific trigger or a build up over time. For example in May I was dealing with exam stress, difficult atmospheres at home, grief for my safe place, and more time on my hands. These all contributed to my spike in panic attacks I have no doubt. Other times I may make it to the other side of a stressful event and then experience panic attacks, almost like a hangover of emotions. It’s not an individual failure, but an understandable reaction to a difficult world. You are not broken for experiencing anxiety. You are not shameful for having panic attacks.

I am a firm believer that to appreciate life fully we need to be able to laugh, even at the bad stuff. There are certain events surrounding some of my panic attacks that I find kind of hilarious looking back on and that helps me to deal with any embarrassment or regret surrounding them I may have. For example, I have terrible stage fright (despite being an actress, ironic I know). Before the final dress rehearsal for Bugsy Malone – my first show in a proper theatre – I had a panic attack in the wings. I was crouched behind a prop box in heels I could barely walk in and my tailored sparkly dress writhing my legs in pain and sobbing without air. It was a pretty desperate moment, though the juxtaposition itself is amusing looking back. The next thing I remember is a stagehand saying into their walkie talkie ‘can someone please come and remove the fire hazard from the wings?’. I was the fire hazard because I couldn’t move myself out of the way, and I was carried back to my dressing room by my director. Talk about a diva moment. Looking back I cannot help but laugh at the absurdity of the experience.

That particular panic attack also showed me how loving people can be. I hope that someday everyone experiencing mental health issues gets to experience the pure love and support that I did that day. I had to go on stage just after recovering to do a mic check. I was so exhausted – my bones were heavy; the exhaustion of a panic attack travels to your core and can make you feel like your body isn’t your own – so all I could do was stand centre stage. The rest of the cast sat in the audience as I weakly sang ‘My Name is Tallulah’. Half way through the song I raised my eyes and saw that they were all swaying along, waving their hands in the air; at the end of the song they stood up and cheered and called out encouragement. It was beautiful. No one judged, no one whispered or pointed. They rallied and supported me. That’s what we all deserve.

Another amusing panic memory was when I fell on my face in the mud on a rainy day trying to escape prying eyes and instead drawing them all to me; again, it wasn’t as embarrassing or well remembered as I feared it would be. Or when my teacher gave me their scarf to wrap around me and help me feel safer and I immediately snotted into it – I got to keep that for a while rather than immediately returning it. Or the time I went to get help while having a panic attack but there was already a girl in the office having a panic attack and it became like a queue for a very strange and unwanted product.

I’ve been alone on bathroom floors, writhed my legs, hit my chest, backed myself into literal corners to try and feel a bit safer, thought I was going to die, taken off most of my clothes because I thought my skin was going to burn, and just general cried and made weird sounds while trying to breathe. Point of all of this is – I survived. And each one has become a little easier to recover from. The worst a panic attack will do is make you pass out; it cannot kill you. Remember that – it cannot kill you. If you are having one, it is horrible and tiring and painful, but you are safe. And if you are with someone experiencing one it’s ok to remind them of that; if you can recognise what it is and call it what it is. Tell them it’s a panic attack and that they are safe. Often it helps not to try and suppress it either but rather to ride it out, let it be. Because they are not the end of the world, but they are super scary and it’s ok to recognise that too.

I hope that maybe reading this has helped someone feel a little less alone in their experience. If you’d like a more in depth guide on how I deal with my panic attacks let me know in the comments below! Sending love and support to you all today! Xx

Advocacy, autism

Ugly Autism

Posted on August 21, 2021August 21, 2021 by Millie :)

As always when talking about autism, I want to remind everyone that autism is not a mental illness. It is a type of neurodivergency; this basically means as autistic people our brains think and process information differently to the ‘norm’ that is expected in the world. However autistic people are more likely to suffer with mental health issues, largely in part to the fact that we are living in a world that isn’t built for us. I’ve talked about an overview on autism acceptance before – which you can read here – but today I wanted to discuss the complexity of an autistic experience and how as more people get involved in autism acceptance and advocacy (which is an amazing thing that I am thrilled to see!) we must keep in mind the spectrum of experiences and therefore the complexity of the necessary solutions.

Sometimes my autism isn’t pretty. I can still fit into the world as I am expected to, but that comes with effort which often goes unseen or under-appreciated. I can do this reasonably easily compared to some, and this is in part due to other aspects of my identity (such as my race) and the supportive people who surround me. You can view this as lucky or not; I think in a way it is unfortunate. It’s unfortunate that I have to manipulate the very essence of the way I think in order to fit into systems I often have no desire to engage with in the first place. I think it’s unfortunate that we can even frame this as ‘lucky’ because that just points to how painful life is for those who can’t, and how this pain is worse than the struggle of concealing one’s true self. While I do frame my autism as my superpower sometimes, I do not believe in the rhetoric that it is a blessing – this also lends to the rhetoric that it could be a tragedy when in reality it just is what it is. I frame it as my superpower personally because that helps me cope with its challenges, and because being autistic is so central to my identity that embracing it in a society that often doesn’t is radically self loving for me. My mental health issues are not the same as me being autistic, but since autism affects how I process everything they are of course intertwined and I have no doubt that being autistic in a world that isn’t has been part of how bad my mental illness has gotten and how confusing it has been to understand. In particular I think my early experiences of mental health issues (before they developed into a clear mood disorder of their own) were heavily intertwined with my autistic experience.

So why am I telling you all this? To give you the smallest cross-section of just one person’s autistic experience, and the complexity of even trying to begin to comprehend that experience, so that you might begin to grasp how neurodivergency and the way it is approached by society is not something that can be easily defined or explained. And that is essentially the point of this post. There are more conversations happening around neurodivergency now then ever before – and that is a joyous and wonderful thing! But these conversations cannot be dulled down to a single Instagram post, or a single profile of autism – which threatens to be the most easily palatable representation of autism. Think of how mental health awareness is sometimes boiled down to self-care, bosses offering a free yoga class to their employees, and pity for the people who can’t socialise but can still just about get through a days work. This kind of awareness fails to recognise or help those suffering in ways that are uncomfortable for us to hear about, or impede how they might function in the systems they are expected to – it doesn’t help the person who has to take a year off work, nor the person who has to call an ambulance because they are convinced they’re dying, nor the person who lashes out at others with angry words because they can’t deal with their inner turmoil. I don’t want a similar pattern to happen as we see more autistic and neurodivergent awareness and representation. We can’t afford to ignore the messy parts of autism that might make some people a bit uncomfortable, or the fact that many neurodivergent people can’t (or don’t want to) participate in traditional capitalist structures that aren’t set up to support them. As there is more awareness, we must show the full array of autistic experiences – from all races, with comorbid mental health issues, different traits, physically disabled autistic people etc etc.

Autism and neurodivergency can’t become something trendy, like a new kind of personality test for CEOs to try and enhance their team and their diversity. They just need to become tolerated, known, understood. Because neurodivergency isn’t always palatable; sometimes it’s messy and it’s different and we have to make sure we don’t run the risk of autistic and adhd people who can more easily fit into the societal expectations (and who want to, because not everyone does) getting ahead and heralded as some liberal caring symbol for employers – for example, while others continue to be ignored.