Posted in autism, neurodiversity

Neurodiversity Dictionary

Here’s a quick breakdown of some terms commonly seen when talking about neurodiversity. I use many of these in my writing so want to make sure everyone understands, and also by understanding this language we can help build a world more accesible to neurodiverse people. If you have any questions about these or any other terms let me know in the comments below!

Neurodivergent

Neurodivergence means that someone’s brain learns, processes, and/or behaves differently from what is considered the norm. Autism and ADHD are most commonly associated with being neurodivergent, but the term also encompasses many other conditions and ways of braining (so to speak) such as: OCD, Dyslexia, Dyspraxia, Bipolar, Dyscalculia, Down Syndrome, epilepsy, and other chronic mental health conditions. 

Neurotypical

Neurotypical describes someone who’s brain tends to function in the way that is considered the norm, more aligned to how the world is set up. This can be seen abbreviated to NT. 

Allistic

Allistic means not autistic. It doesn’t necessarily mean someone is neurotypical, it just means that they’re not autistic. 

Functioning Labels

Some people use terms such as ‘high-functioning/ low-functioning’ to describe the presentation of neurodivergent people, especially autistic people. However many neurodivergent people don’t like the use of these labels at all. This is because high-functioning essentially means ‘more able to act neurotypical’ and erases the very real challenges in their lives, and challenges from being able to present more neurotypical when they are not! Meanwhile ‘low-functioning’ tends to write people off as having less value or ability to do anything because they don’t conform to neurotypical standards. There are many more issues with these labels, but all to say that these labels fail to encompass the experience of neurodivergent people and puts them in boxes – unless a neurodivergent person tells you it’s ok to use these labels specifically to describe them, it’s best to avoid them. 

Stimming

Stimming stands for self-stimulatory behaviour. It involves the repetition of some kind of movement, sound or behaviour to regulate a person’s nervous system. While all people may stim sometimes, it is a common trait in neurodivergent people – especially those with autism or ADHD – to stim regularly, although some people may have been trained or forced not to stim which can be very damaging. Examples may be flapping hands, bouncing their legs, humming – the list goes on and on. Unless the behaviour is immediately dangerous to the person you should never try to stop them (and even if it is, proceed with caution and sensitivity). 

Nonverbal

Nonverbal means a person does not speak. You may hear the term ‘nonverbal autistic’ or ‘non speaking autistic’. Being nonverbal does not mean a person is less worthy or less able to communicate, nor does it mean anything about their intelligence or personality; it simply means they don’t speak – and it is important that they are provided the resources to express their own experience, needs, and access education. It’s also very important within the autistic community that we uplift and listen to nonverbal autistic voices – especially POC nonverbal voices – as they are often the most ostracised. Here are three pages on Instagram you can have a look at:

  • @ galaxibrain
  • @ fidgets.and.fries
  • @ nigh.functioning.autism

Ableism

Ableism refers to the system, and as a part of that the individual actions and words, that discriminate against disabled people (many neurodiverse people are disabled, which is not a bad word). Ableism is often not understood or recognised and it is intrinsically linked with racism, homophobia, transphobia, sexism, and economic inequality. It affects the life of disabled people everyday. 

Masking

Masking means a neurodivergent person is covering up their traits. Many people learn to do this to be accepted easier, and may not even know they are doing it, and it can lead to serious burnout. Sometimes people are forced to mask in situations for their own safety.

Sensory Seeking/ Sensory Avoidant

These terms can refer to specific behaviour or the whole experience of an individual. For example someone may describe themselves as ‘sensory seeking’ meaning that they often act in a way that looks for more sensory input to regulate their nervous system and how they are feeling. This would mean they are under sensitive to input like noise, texture etc. Meanwhile someone who was sensory avoidant would be extra sensitive to sensory input, so they would look to lower how much sensory input they had. People may not even realise this is what they are doing. Some people may be sensory seeking at times and sensory avoidant at others – it’s not always the same. 

Sensory Overload

Sensory overload is when your five senses take in more information than your brain can process at that time. This can set off a fight, flight or freeze reaction which can feel really scary and like a crisis to the individual, especially if they don’t understand what’s going on. It can present in lots of different ways. The difference between sensory overload and an anxiety or panic attack is that sensory overload will usually subside/ lessen when sensory input is decreased. 

Tics

Tics commonly occur alongside lots of neurodivergent conditions. They are involuntary sounds or movements and the person cannot stop these from happening. 

Echolalia

Echolalia is the meaningless repetition of something someone has just said. Autistic people, those with Tourette’s or developmental/ neurological conditions can often have echolalia. 

ABA

ABA stands for applied behaviour analysis. It’s a therapy that many autistic people, especially children, are subjected to to try and modify their behaviour so it is seen as safer or more acceptable. The problem is it often teaches autistic kids to mask and many people have come out later in life to speak out against the trauma they experienced from ABA. There is a lot of pushback from the autistic community on this kind of therapy being used, but the conversation is complicated as many parents of autistic kids often have no other choices when worried about their child’s safety or where their children will go everyday. This is not a field of great knowledge for me so once again I would refer you to research autistic viewpoints if you’d like to know more about ABA (fidget.and.fries on Instagram ein particular has a downloadable file of all their extensive writings on ABA).

Self-diagnosis

Self-diagnosis is a term often seen with autistic and ADHDers. It means that they have not chosen to or been able to pursue an official diagnosis from a ‘professional’, but that they recognise themselves to be neurodivergent. Many people do not have equal access to professional diagnosis – and the diagnostic system itself is very outdated – so they have to self-diagnose. It’s important they are respected and listened to regardless. Some people may also choose not to pursue an official diagnosis because they are worried about the repercussions of this. 

Person-first language vs identity-first language

Identity first language puts the condition of a person first – for example ‘autistic person’. Person first language puts the person first – for example ‘person with autism’. They’re are arguments for both. Some people see person first language as emphasising the fullness of a person without defining them by their condition, while identity first language can be seen as recognising how the condition is an intrinsic part of a person and not something to be ashamed of. A large part of the autistic community in specific is in favour of identity first language, however it will always come down to personal preference, and each person’s preference should be honoured when referring to them specifically.

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

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.