Posted in autism, Personal Growth

Guide for Autistic Travellers

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.

A la playa en Barcelona

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.

In a space pod for the night!

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.

At Teufelsburg, Berlin

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.

At Prague Castle

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

Posted in Advocacy, autism, Mental Health

Diagnosis – Good, Bad, or Dependant on the System?

Validation:

It can be very hard to access treatments and be validated by ‘professionals‘ within this system without a diagnosis. Budget issues and a mental health system based in oppression that seeks to produce productivity rather than healing and often doesn’t recognise its intrinsic links to all other aspects of capitalist society doesn’t help this. However, more importantly, without a diagnosis it can be hard to validate ourselves – to give ourselves permission to display certain symptoms, feel what we feel, and believe that it’s real.

Getting a diagnosis can be a validating and liberating experience for many people – my autism diagnosis certainly was for me. It helped me understand myself, put my entire life into context, and connect with other people going through similar experiences. That was incredibly useful with all my diagnoses – finding people going through the same thing and learning how they were managing in a world often not built for us which helped me find ways to define and facilitate my own healing. Community truly is a powerful force. It teaches us that we are not alone, and is one of the most invigorating tools in supporting mental health; my diagnoses are helping me find mine.

But we must ask the question – why do we lack validation without a diagnosis? Why have we not been taught validation and community by the systems surrounding us? If human experience was universally understood as fluid and acceptable, would we need diagnoses at all?

Stigma and Stereotyping:

However, diagnoses have also been used as oppressive tools throughout history, and being given a diagnosis can be a terrifying experience. For example women could be put into mental institutions if their husbands thought they weren’t living up to their duties and this was justified under the label of hysteria. Nowadays Black women are significantly more likely to be diagnosed with BPD – this may be a misdiagnosis of a neurodivergency (chronically under recognised in Black people) or due to how their traits and emotions are perceived so different within the system. Black people are also four times more likely to be detained under the Mental Health Act in the Uk – a hugely oppressive tool that twins criminal incarceration.

It may feel like a condemnation to receive a diagnosis due to preconceived notions of stigmatised mental illnesses, and lack of care options. Sometimes it can seem like a lifetime of suffering and inevitable failures lie ahead. It may even be harder to be taken seriously within the system – especially in psychiatry wards where any legitimate complaints can be brushed off as ‘symptoms’. Telling family and friends may elicit negative reactions due to their preconceived ideas, regardless of how positive the experience was for the individual

Stuck in a Box:

Although it can be liberating to understand your behaviour through the lens of a diagnoses, it can also be challenging when dealing with others and interpreting your own experience. It can be difficult to know where you start and where the illness ends, or to what extent you should view yourself as your illness. It can be difficult to know whether an emotional reaction is ‘natural’ or a symptom or a potential warning for future issues. It can be difficult to be heard and seen as anything but your diagnosis and your experiences as anything separate or unrelated to it by others.

Diagnosing a mental illness is not straight forward. No one person presents the same, and often two psychiatrists will have completely different opinions leading to misdiagnosis/ confusion for the individual trying to grapple with many opinions and find understanding.

And yet once given a diagnosis we are often stuck in a box or a more rigid understanding of who we are and how me must think and will behave. Does that seem logical? It doesn’t to me. But it’s understandable within a system that looks for easy processing, and profit – both achieved through the over medicalisation of human distress. 

When the DSM was first released in 1952 there were 102 diagnoses in it. By 2000 there were 365. This has since reduced again – but you can see how inexact and dramatic the medicalisation has been.

Nonetheless, getting a diagnosis, finding community and comfort it in, can be a very positive experience. My autism diagnosis certainly was for me, and being able to say I’m bipolar helps me feel whole and proud of everything I’ve been through. But getting those diagnoses, navigating conversations, therapy, and life with them has been challenging and complicated. And I am privileged in many ways. Bottom line – receiving a diagnosis is not something to be afraid of, and if your experience was good then that is amazing, and valid! But negative experiences are just as valid too. Perhaps even more so because they often fall on the more marginalised. And everyone’s emotions, pain, and trauma are valid with or without a label. We deserve a society that teaches us that.

Sources

  • Sedated: How modern capitalism created our mental health crisis by James Davies
  • verywellmind.com 
  • mind.org.uk
  • Phenomenology of Borderline Personality Disorder, The Role of Race and Socioeconomic Status, Natacha M. De Genna, PhD and Ulrike Feske, PhD
  • My brain
Posted in Advocacy, autism

Ugly Autism

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. 

Posted in Advocacy, autism

A Guide to Autism Awareness Month (By an Autistic Girl)

April is autism awareness month, so you might well come across information floating around about autism online. For many autistic people, especially autistic advocates, can find this month difficult or have mixed feelings around it – not all the information circulating will be correct or portray a positive narrative, and this can be frustrating, stigmatising, and exhausting to correct. So here is a short guide on how to navigate autism awareness month for autistics and neurotypicals (people who do not have autism and are not neurodivergent) alike:

The Ground Rules

Firstly, let’s lay some ground rules for autism awareness month – the stuff you really should know. When you read something about autism online, do not automatically assume it’s true. If it’s written by an autistic person, then it’s generally trustworthy. If it shows autism as a problem to be fixed, or a desperate life, then it’s not to be listened to. And if it comes from ‘Autism Speaks’ then completely ignore it (more on that later). Next, make sure you are not correcting autistic people on their own experience, or trying to speak over them. Instead, uplift autistic voices – and all autistic voices. We are as diverse as the world, and we all have value, so make sure you’re paying attention to LBGTQ autistics, Black autistics, non-verbal autistics, autistics with higher support needs… all of us! Finally, don’t use the #actuallyautistic hashtag if you’re not autistic, it’s a hashtag we use to find each other and to identify posts by autistic people.

Acceptance not Awareness

While becoming more aware of the diversity and lived experience of autistic people is amazing, and helps to de-stigmatise autism, it’s not enough. Furthermore, sometimes the idea of awareness can become a connotation of a problem that needs to be solved or cured, which autism is not. So during this month, you may see it called ‘autism acceptance month’ instead. That’s because what autistic people really need is acceptance. More than that we need to be accommodated and valued in society, because every single one of has worth no matter where our traits lie on the spectrum, and when accommodated to we can do so much. So please, make sure that this month you are also thinking about and working on your acceptance and accommodation of autistic people. If you want to read more about why I think autism is amazing, please read my post ‘Autism is My Superpower’ here.

All Year Round

The fact is that autistic people are always autistic – all year round. That means that you cannot only work on accepting autistic people during the month of April. Including us, accommodating us, appreciating us and loving us is a full time job. And it’s important, maybe even paramount, to note that accepting autistic people isn’t just about accepting those who have a diagnosis or are public about that diagnosis. Many of us can’t be open with our diagnosis, or are uncomfortable about being open with it (which is why we need your help to de-stigmatise autism). Many people don’t even know they are autistic. So what does that mean for you? It means accepting the weird kid who only talks about the same few topics or can’t make eye contact, and saying hello to them, regardless of what response you might get. It means not laughing at the way in which someone flaps their hand or the odd noises they make. It’s about being sensitive to the person who finds light and sound overstimulating. It means accommodating the quiet girl, even when she can’t talk at all. It means caring.

No Autism Speaks

You may have heard/ hear about Autism Speaks’ light it up blue campaign, supposedly in support of autistic people. However autism speaks have been hugely damaging to the autism community, portraying autism as a thing that destroys lives and families, and something that needs to be solved. They also do not help autistic people in a financial sense – only a tiny portion of their budget (I believe 4%) actually goes towards autistic people and their families, while their CEO receives an obnoxious amount. Furthermore, not one person on their board actually has autism, which is an outrageous sign that they do not listen to us. So instead of lighting it up blue, please light it up red, a way we are combating Autism Speaks, and use the rainbow infinity symbol instead of the blue puzzle piece of this organisation.

A Guide for The Autistics

This month might get overwhelming for you, especially if you are trying to correct information online or advocate a lot. So this is my reminder for us to check in with ourselves and allow ourselves time to rest and do what we enjoy as well. If you are feeling worn out maybe reach out to someone who knows you well also and ask them for a bit of extra support. You are under no obligation to do anything this month if you don’t want to. And maybe while everyone else is working on their acceptance of us, we can also try to accept ourselves. It’s something we can struggle with as autistic people. But we are so valid, and honestly really awesome.

Thank you so much for reading. If you have any questions please do drop them in the comments, and feel free to get in contact. Sending all my love and support!

Posted in Advocacy, autism, Personal Growth

Autism is My Superpower

I’m autistic. Having autism in a neurotypical world is not easy because generally the world isn’t built for us and proves to be confusing, but for anyone struggling with their diagnosis/ symptoms (and any neurotypicals unclear on the individual nature of autism) I want to make it clear that having autism isn’t a defect. Nor is it a mental illness. In fact, it can be a bonus in many situations, and when accommodated to autistic people can provide new perspectives and skills to the benefit of others. I, for one, like to think that my autism is my superpower, and this is my personal experience:

I learnt to ‘mask’ my autism – consciously learning how to act and react from other people’s behaviour; having to put effort into learning social rules that came naturally to others. Masking can be exhausting, so I know it’s essential that I take breaks and find time for myself, but like a superhero in a costume, it can also be powerful. How? Because my passion is theatre, and when I become the character I act out on stage, I am easily able to slip myself into their shoes – I know how they would behave and why. It comes effortless to me. The misconception is that autistic people are like robots and can only slot into certain careers. In reality we are varied like everyone else, and our uniqueness is incredible. We exist in every identity there is: every race, every gender, every sexuality, as parents and children. Our variety is often overlooked.

My increased sensory input is a key feature of my superpower. I observe more, hear more, taste more. This translates to a benefit in so many situations. You don’t know your train time? Don’t worry, I glanced at the board quickly and noticed it. You’re lost and don’t know the way back? Don’t worry, I spotted landmarks along the way, I know where we’re going. You’re trying to remember where you put your glasses? Never fear, I spotted them. And if we’re thinking about sound and music, my greater sensory input comes to my aid once again – that along with my ability to spot patterns as part of my autism, and my synaesthesia (which is far more prevalent among autistic people than the general population). When I hear a piece of music, it is alive to me. It is full of colour, I hear every layer of the rich instruments, and I can see the patterns the notes are forming. If I want to then play that piece on piano, I need only translate the pattern onto the keys – give me a bit of time and I can paint the picture I hear all by myself. This is my superpower. 

Not to mention the fact that I am quite simply neurodivergent. I think experience the world in a way that is different to ‘the norm’, or rather the majority. Why is this a feature of my superpower? Because I can come up with new ideas and perspectives that may have been overlooked or not thought of at all. In certain situations this can become the way I overcome challenges or help others to do so; in the right combination my divergent thinking could be innovative. Us autistic people have a place in this society, no matter where our traits lie on the spectrum, and if we are accommodated we may even be able to offer solutions, certainly valuable contributions at the least. 

Like a superhero may have an emblem, sign, or symbol, I have my stims. By stims I mean self stimulatory behaviour. Why is this so amazing? Well, it indicates to me how I am feeling (different stims, like tapping my fingers on my palm or twirling my ankle, correspond to different moods). Not only this, but should I start to feel an uncomfortable emotion, stimming freely can help calm me down. There’s a lot of people out there that don’t have something so simple in their toolbox, so this is powerful to me. It’s also such a pure form of expression, and can even help me release my creativity, tapping into my flow. Furthermore, my stims evolve over time – hitting my head morphed into covering my head and now I need only put on a hat to feel at home. How awesome is that? 

This barely scratches the surface of my positive autistic experience, but I hope it has enlightened you. Autism is not a bad thing – quite the opposite. And the beautiful part of it is that no one autistic person’s experience is the same as another. We have a place in this world, and we’re not going anywhere, so the more that neurotypicals begin to understand and help us meet our needs, the more we can give.