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Balkans Roadtrip

I’ve just got home from a roadtrip across the Balkans with my two high school friends. We booked our flight to Budapest back in December so for a long time the trip was simply referred to as Budapest 2022. Then we went on a trip to Dublin at Easter and gained a trip mascot – Kevin the carrot. We created a Kevin the carrot Instagram page called Kevin’s crazy carrot adventures so spent a lot of the trip getting content for it. A group trip is something I never really thought I’d do but I really really enjoyed it.

This picture was taken in Bosnia at the Tara Canyon. It is the second deepest canyon in the world and we had a 6 hour rafting trip down it.

Countries visited: 7

Number of days: 18

  1. Budapest, Hungary
  2. Ljubljana, Slovenia
  3. Lake Bled, Slovenia
  4. Hochstuhl, Austria
  5. Belgrade, Serbia
  6. Sarajevo, Bosnia
  7. Tara canyon, Montenegro
  8. Split, Croatia
  9. Trogir, Croatia
  10. Zagreb, Croatia

This trip isn’t really something I ever thought I would do for a number of reasons:
It was very poorly planned
I get stressed when I have to spend to much time with people
We were constantly changing location

This is a view of Lake Bled in Slovenia.

A lot of these points are relating to my autism and I will explain further below. 

It was very poorly planned
For autistic people, lack of planning is a big issue. We like to know all the big W’s – who, what, when and where. We all had exams until 1 week before the trip though which is where the planning problem came from. It helped massively that I had exams to focus on first. I’m a very all or nothing/ black and white style thinker so whereas I used to need to know exactly what I was doing, I am now a very in the moment person and struggle to think ahead to the future – which provides a planning problem on the other end of the scale. Luckily, as we were travelling before school holidays, it didn’t matter that we were last minute. We did it all very systematically:

  1. Decided how long we wanted to go away
  2. Which countries we wanted to visit
  3. How long we wanted to spend in each country
  4. Which places we wanted to go to in each country
  5. How we would get between cities

We left the daily itinerary to when we got there but had a good basic plan. I really didn’t mind this because my main issue with lack of planning is wasting time and not having anything to fill a time slot however, I took my laptop meaning that in the time that the others spent faffing, I could work yet still be available to contribute to any decision making. In the past I think I’d have just got very anxious at the empty time spent unsure of what the plan was. 

I get stressed when I have to spend to much time with people
The main reason I don’t like spending too much time with people is because I get exhausted from socialising. Despite this, I found I was fine. I think this is because I went away with a group of friends who I have known for a very long time so can be myself around them and don’t have to mask. This relieves most of the strain of being with a group of people for a prolonged period of time. Additionally, a lot of the time we spent together was walking which is far less intense. 

We were constantly changing location
This is something that in the past I would have found very stressful because I like knowing that I have a ‘safe place’. Despite this, I find now that as long as I have my phone and laptop with me on a trip I’m fine. This is mainly due to the fact that it means I have a sense of normality in that I can work. It probably doesn’t make sense but it just provides a constant and something that I’m in control of. I am someone who likes to exercise as a way to relieve any stress so it really helped that most of the days were spent walking around. Our trip total miles were 255! I do think my friends got slightly frustrated that my solution to everything was walking. Lost? Don’t bother with Google maps, just walk and you’ll get to an important landmark eventually. Too hot? Just walk. Too tired? Walking will energise you. 

So overall, it was a great trip and I had an amazing time.

This was taken on the way up a mountain, at the border with Austria.

Top tips:
1. Don’t get night buses to save money, they are really busy, you won’t get any sleep and it’s much better to get an early morning bus. The bus from Sarajevo to Split was one of the most scenic rides I’ve been on and I had a whole row of seats to myself. 
2. If you are in a group of three or more, it’s often cheaper (and more pleasant) to rent an apartment. 
3. Splitwise is a great app for logging shared expenses. 
4. Most of the touristy attractions are quietist early morning and late afternoon. 
5. As long as you have access to a washing machine, you can manage with a small rucksack for 3 weeks. 
6. Using a monzo travel bank card means you won’t get charged for using a card abroad. 
7. Most cities have apps for buying tickets both for the airport shuffle bus and in the centre. 
8. Make sure you always have a snack supply. 


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Social hangover

I was always someone who thought that being alone was when I was happiest – which makes sense. I would always choose being alone over anything else because socialising would have such a negative impact on me. I wrote this poem titled ‘social hangover’ to describe how it feels. 

Social hangover

The morning sun seeps in
Splintering clammy skin
A wave of humid heat
Through curtains paper thin

Sharp scatterings of narratives
Pangs to a sluggish mind
Burning larynx
Chords severed, left behind

Stuck stagnant in a dry throat
Static embers of last night
Reeling in an uneasy stomach
The acidic bite –

Of unheard words
Boiling turbidly in the brain
A throbbing,  aching
Social hangover pain

Whispers of memories
spiralling deep in my head
The soft comfort of hiding
Under the bed

Anticipation 
Participation
Rumination
Repeat.

I think this poem depicts how it feels to be autistic and navigate social situations.

You may get from this poem that the main issue I had with socialising was the overthinking that comes from it. I would always feel anxious that I’d said or done something wrong. I think that having time during lockdown to learn to accept myself and the way I am really helped me to embrace spending time with people without feeling guilty about doing things wrong and making social errors. It means that I can socialise now without overthinking as much.

So I’ve gone from someone who despised socialising to someone who actually really values social interactions. Obviously the whole sensory side of things can still be an issue but I’m quite good at managing that.

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What would I be, without my autism?

I’ve not posted in a while but I’ve been super busy with work, volunteering and Uni. I got the news that I passed my exams this morning which is great and I’m pretty happy with the way my life is going right now. I just thought I’d write a bit about something that I’ve been thinking about quite a lot recently.

I think once you gain an autism diagnosis, it’s a constant learning process. There’s always more to learn about it. After all, it’s a very complex condition that exists on a spectrum so there are many different ways that it can be experienced by other people. So the more and more I learn, the more and more I get these realisations of ‘ohhh, that’s why I’m like that/ behave that way’. And then on the converse, the more I think ‘wait a minute, is my ENTIRE personality and identity autism?’. Now you may be forgiven in assuming that it doesn’t matter either way – which is possibly true. However, do I really want my entire identity to be autism?

Personality is defined as:

The combination of characteristics or qualities that form an individual’s distinctive character.

While identity is:

A person’s sense of self, established by their unique characteristics, affiliations, and social roles.

I think it’s important to note that anyone, regardless of there disability or condition, will exhibit different personalities. Some people are very individualistic with their disabilities, others identify with the condition and feel proudly part of a group. I think it’s hard to know whether something is an autistic trait or a personality trait and often there is a big overlap. For example, I am a very happy person and get very easily exited by things. Some people would describe me as being like an overexcitable puppy. So my question is: Is my personality a happy go lucky one or, do I just see and feel things very intensely as a consequence of my autism?

We can broadly speak of autism using the analogy of a sportsman. Yesterday morning, I cycled to a nice little spot on the river and had a lovely swim. I was thinking about how much I loved my bike and how I would struggle to live without it. Life just wouldn’t be the same. We can say the same about autism. If the cycling is taken away from a cyclist, that part of the person will no longer be. Just like if you take the autism away from an autistic person, that part of the person will also cease to be. Cycling makes up a massive part of a cyclists life – it’s what they do. Without it, the thing that makes up there identity is gone. It’s the same with autism I think.

Personality is much to do with peoples perceptions and how they respond and react to different things and a lot of autistic people react similarly to certain external stimuli. It could be thought of as like a cake. Imagine you have different options of base eg. Chocolate sponge, vanilla sponge or carrot cake. And then you can also choose sprinkles, fondant icing or buttercream frosting. Imagine that all autistic people have the same base ie autism. However they can have different toppings because there’s extroverted autistics and introverted neurotypicals. Some base and topic combinations are more common than others but that doesn’t mean that either is a given. Neurotypical people can have the same toppings as autistic people just like they can have the same traits.

Photo by Ahmed Aqtai on Pexels.com

That’s not to say that my autism isn’t connected to my personality. Because it is. It is a big part of my individuality. However, I do think that there is more to me than my autism. It is a part of me but not all of me.

This kind of links into whether we use person first (person with autism) or identity first (autistic person) language. Person first language distinguishes clearly between the person and their disability – however many people argue that there is no need for autism to be separated from the person. I think the issue a lot of people have with person first language is that it kind of gives the impression that autism is an accessory. A bit like a handbag that you can just leave at home if you want. Really, autism can’t be cured or just used as an accessory, it’s a neurological difference that affects someones day to day life. You could argue that person first language would require you to say ‘person with gayness’ or even ‘person with masculinity’.” This wouldn’t really make sense. Some people prefer person first language whilst others prefer identity first language. I don’t really have a preference so long as people see me as more than my autism. I feel like often, when I tell people I’m autistic, they can’t see beyond it. I think it’s mainly due to stereotypes and lack of education. Hopefully in the future, this will change.

But to conclude – I think that my autism makes me me. It has caused me a lot of struggles in my life but also a lot of successes. I think that over time, I have learnt to flip the coin and use my autism to my advantage rather than let it be a negative. This has actually come from learning about autism and how it relates to me and my individuality in great depth. I know exactly how it effects me and exactly how I can manage those effects.

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Small talk

I saw something on instagram a few days ago that labelled smalltalk as:

Noise pollution

For autistic people, this is a common belief. Autistic people are known for hating smalltalk, often going great lengths just to avoid it. For example, avoiding people they know in public, just to avoid smalltalk. Smalltalk often occurs in everyday interactions with acquaintances and people we don’t know. And there is good reason for such an endeavour as small talk is something that is not always done on your own terms and doesn’t exactly achieve a defined goal. It is very much superficial and neither party really gets any information of substance or use from each other.I think it is likely one of the reasons autistic people are often labelled as being so intense – because we often drive into the deep, meaningful conversations straight away.

According to the Cambridge dictionary, small talk is:

Conversation about things that are not important, often between people who do not know each other well.

However, looking more in depth reveals that actually, smalltalk isn’t actually about the context of the conversation but more to do with social connection. I always hated smalltalk. It made me uncomfortable and gave me the desire to just leave the conversation. Despite this, I’d say I’ve got the hang of it now as I understand its purpose more. It isn’t about the content of the conversation, but the context and connection. Additionally, having everything online during COVID really helped me to develop my skills in a “safe” environment ie. behind a screen.

Photo by Tim Douglas on Pexels.com

I think that one of the reasons smalltalk was so beneficial in the past is because it signalled that people were not intending to be a threat to each other. In some respects, this is still relevant to today. If people don’t engage in smalltalk then they could be perceived to be unfriendly and therefore a threat. For example, a few days ago, I was waiting at the bus stop at 2am and it was only me and one other person around. If we had just stood there in silence, then we would possibly have viewed each other as a threat but a simple and superficial question of “Is this where the national express stop is?” meant that we knew we had a common motive.

If we think about it a bit deeper, small talk should be easy for autistic people. It is highly predictable. Almost like playing a game where each player knows the next move. People can have an entire conversation without even having to share any information of substance.

Beyond this, small talk can be termed as “social lubrication” and a mutual agreement for people to coexist. It can provide the means to slide into deeper topics and potential friendships. It is the way that we give people first impressions and make new friends and acts as a funnel into deeper relationships. It is highly important in the world of work for networking and there are a lot of courses out there to help business people perfect their skills in smalltalk as it can be the difference between making lots of money or very little.

So, now we have established the importance of smalltalk, how can we get better at it?

  1. Be prepared for common questions

Like I said above, smalltalk is highly predictable and a lot of topics of conversation are often those that are equalisers. For example, the weather is a great thing to talk about as it is something that everyone experiences the same.

Other common questions include: What do you do? Where are you from? Why are you here? What was your journey like? etc

When you first meet someone, you could start with a direct opener such as “Hi, I’m Finty, I don’t think we’ve met before?”

Then you could ask open ended questions that the person can’t just answer yes or no to. Things like “Have you ever been here before?”.

  • 2. Active listening

Show the person that you are listening by responding to them appropriately. For example, by nodding your head, leaning in slightly or saying things such as “uh-huh” or “mmm”. This way, you are showing the person that you care about them and giving them a good impression of yourself.

  • 3. Practice

Whether it be through playing out scenarios in your head or making a conscious effort to speak to one stranger each day, practice makes perfect!

  • 4. Learn how to get beyond the smalltalk stage

Really pay attention to what other people say and latch onto any personal information they give. A good rule of thumb is to tale one piece of personal information, give some information about yourself and then ask one question. eg. If someone says they like sports, I could say “I love sports too! I’m a runner, what sport do you do?”. This way you can get to know a person more and get beyond the smalltalk.

  • 5. Plan your exit

It may seem contradictory but I know that personally, as long as I know that I have an easy get out, I am okay with doing something that makes me uncomfortable – such as smalltalk. One of the worst parts of small talk is worrying that you might be trapped in a conversation forever. Knowing that you have an escape just helps you relax a bit more.

You could say thinks such as: It’s been great chatting with you. Maybe I’ll see you again some time” or “Sorry to rush off. but I hadn’t realised the time!” or “It was lovely to meet you. Have a nice day!” or “Sorry but I’m gonna have to dash off to another meeting!”.

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Autism and the need to be busy all the time

In my previous blog I mentioned that in order to overcome my loneliness, I tend to make myself really busy in order to feel like I have a sense of purpose. I thought I’d unpick that a bit more.

Just to put things into context – A few weeks ago, I had a two hour exam, followed by a meeting with a charity I’m a youth campaigner, a two hour meeting for a peer research job I have followed by a meeting with an environmental group I’m part of. And then, after all that, I still had to log some hours of work. So, when I say I’m a busy person – I really am!

Photo by Tara Winstead on Pexels.com

I just feel like I function well in chaos. Everything I need to do is constantly whizzing round in my head. I like it like the though. It’s like my head is constantly being pulled in all directions. I don’t so much get stressed but excited. I think the emotions are very similar and my body confuses the two meaning I am not so much effected by having so much on my plate but rather in a constant state of being happy and looking forward to things.

I’ve not seen much online about hyper productivity and autism but I’m sure it must be common. In society today, I think it is extremely easy to be pulled into the trap of trying to find purpose. We are generally taught that we are valued by how we contribute to society rather than the value we give to our own lives and those closest to us. There are pressures from all round to be productive and as an autistic person, prone to take things to the extreme in order to appear normal – hyper productivity occurs.

A while back, I tried to change. I tried to do less. It didn’t go very well. I figured out that the issue wasn’t in the things that I do, it was in the way I did them. I am very prone to attempt to multitask but I think what I’ve learnt is that it is better to give my attention to one thing only, rather than multiple things at once – whether it be with studying or spending time with friends. I find that the more busy I get, the more busy I want to be.

There are two sides to the coin of being really busy and motivated to do things. It can be a bad thing. When I first started Uni, I really struggled with prioritising the things I needed to prioritise. I was clinging onto the things that had kept me busy throughout lockdown when really I should have given them up. I think that it was my way of coping with the change of moving out because it gave me a sense of normality while distracting me. I always that because I hadn’t reached burnout yet that I was fine, however I wasn’t devoting energy to the things I needed to.

So why might Autistic people be more prone to this?

Desire to fit in

I think a lot of the narrative in society, especially since the pandemic, tells us that we have to be productive all the time. Volunteering for things, even when our plate is already full. Making promises and having to rush tasks just to make it work. Being consumed by work all day every day. And then once you’re technically done with a something, you feel guilty for not doing more. It’s a vicious cycle. You judge yourself for what you haven’t done, rather than looking at what you have done. Yet being hyper productive is a way to feel worthy, fulfilled, and in control. And so you become obsessed.

Obsessive nature

A really common theme in people with autism is the obsessive nature. Obsessions give stability, security and control. Sometimes however, with people who mask a lot, we can fall into the trap of becoming obsessed with whatever is socially acceptable, just taking it that extra bit too far. Social media is definitely a place where toxic productivity festers, for example through tweets about spending the pandemic learning new skills and utilising every second. Many people focused on productivity during the pandemic. Many people felt afraid and uncertain so tried to gain control. If you are busy, you are distracted from fears of the future. It was all over – free courses online, really amazing experiences being offered online and widening access to things that we’d never have imagined doing before. But – How do you know when to stop? For me, that’s where I struggle.

Executive function

Executive function and self-regulation skills are the mental processes that enable us to plan, focus attention, remember instructions, and juggle multiple tasks successfully.  I’ve seen it described as having a role similar to a conductors in an orchestra. It manages and organises each musician. Tells them when to begin, how fast or slow, and when to stop playing. I struggle knowing when to stop things and when I’ve done enough. I get hyper focused and as a driven person, take on more and more.

 Hyperfocus

I think Hyperfocus is a less talked about autistic trait. It involves a person becoming fixated on a specific thing, topic or event. It’s more than just concentration. It can mean that we are extremely productive and get a lot done. I can go all day going from one important thing to the next, sending email after email that would take other people hours to write. It seems easy because I am just in this mindset of ‘go go go’. However all this does have its draw backs in that we have less energy for other things – often the important day to day things like admin tasks or keeping on top of washing.

Something that I have used to help me with this is time blocking – assigning certain times to certain things. I find it so easy to get lost in doing something that it gets to the end of the day and I realise I’ve spent far too long on one thing to the detriment of another.

Time blocking is a time management tool that divides your day into separate blocks of time. Specific tasks are allocated to each block. 

By setting reminders on my phone, I have to move on once the time is up. At first it was really hard to do because I hate leaving things unfinished and often my brain will keep looping back to the unfinished task but now, I just view notion (the app where I keep everything on my laptop) as a second brain so I can just tell myself that it’s okay because all the work I’ve done is still there, it’s not going anywhere and I can pick up from where I left off. Changing my view to this really helped me.

I think another reason I struggled with time blocking is the fact that I work best when I want to do something rather than when I’m being told I have to do it. What I tend to do to get round that is split all the tasks that I have to do up, and then give myself options that I can choose myself for each time block.

All of this has really helped me because before, I was consumed by my work and not balancing things very well at all. I was trying to just fill every minute with ‘finishing things off’. Now, I still fill every minute but I also have specific times for things like socialising, meeting people and running. And because I have specific times for certain things, I make sure to give my undivided attention to each thing I’m doing rather than trying to multitask.

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Autism and masking

I’m just starting this post with a quote that I find very important when thinking about high functioning autism.

“(so called) mild autism doesn’t mean one experiences autism mildly… it means you experience their autism mildly”

Adam Walton

It is very much relevant to girls on the spectrum who go to great extents to mask their autism in an attempt to appear “normal”.

Masking: When autistic people present or perform social behaviors that are considered neurotypical. 

I was diagnosed with autism in March 2016. It came about after my therapist suggested it. I remember her first introducing the idea to me and being quite shocked, almost offended. I didn’t see autism as something that people like me would have. When I thought of autism, I thought of the vulnerable and disabled people that my parents work with – not me. They work with autistic people so how could they not know? The therapist showed me a leaflet and told me to highlight the things that affected me in either green, amber or red to represent the extent to which they related to me. I was surprised to see that a lot of them described things that I experienced. Ultimately, it was up to me whether to be assessed or not and I just thought that if it could give me answers that I should go for it. I also knew that the people at school with autism got a lot more support than I was at the time. I wanted to be more supported because school was awful so any way to make it easier was a bonus. I would be able to access practical support and be able to advocate for myself.

I think if I had been diagnosed as a child, that perhaps things would be different. I may have been over supported and as a result, be less independent and more limited but as a teenager, I could have control over what support I was given.

I was involved very little in the actual assessment. They mostly asked my parents lots of questions about my development and childhood. My high school teachers also had to fill in a questionnaire. I was only there for a very short time. I was asked questions, had to do a role play and read a book. I remember before I got the autism assessment, my parents told me not to ‘pretend’ to be someone I wasn’t. I think they thought that I might ‘act’ autistic to get the diagnosis. I tried to act normal. I was told that there were no right or wrong answers but I knew that certain answers would result in a diagnosis and some wouldn’t. I struggled with the role play and also making eye contact with the assessor. I also felt quite nervous as my parents and someone else was watching through a one- way screen. I didn’t read any blogs, watch youtube videos or read books on autism before my diagnosis because I didn’t want it to influence me. All I did was read a leaflet given to me by my therapist. I wasn’t an expert in autism so I didn’t know the ‘right’ answers or relevant things to share with the clinicians. I was just myself.

I wasn’t surprised when I got the diagnosis because I’d known my whole life that I was different. I think that the biggest thing that my autism diagnosis has given me is being able to understand myself and know who I am. I have been able to reconcile with myself for growing up thinking the way that I was, was my fault. I actually think now, that it is more of societies fault for not accommodating for anyone different.

So why didn’t I get a diagnosis sooner?

It is largely accepted that there is a gender bias in Autism diagnoses with more males being diagnosed than females. I believe that there are many flaws in both societies perceptions of autism and also in the way it is viewed by health professionals. Many women go undiagnosed because they present differently to autistic men. Much of the indicators for autism don’t take into account gender differences in autism. Women are generally better at hiding their autism compared to men and are simply viewed as a ‘bit different’ or ‘shy’. For some people, living behind a facade is fine and they get by but for many women, it is exhausting to be constantly pretending that you are someone you’re not; only being yourself when you are in a ‘safe’ place. Women get diagnosed with every other mental health condition but autism because they are compared to the male representation. They gain labels that they don’t fit.

But the main reason…..

Masking

Photo by Egor Kamelev on Pexels.com

As said above, masking is when autistic people present or perform social behaviours that are considered neurotypical. 

Masking has different motivations in different people however ultimately it comes from a desire to fit in. Sometimes, things like personal safety can depend on masking and therefore a person needs to mask. It is often a subconscious effort: behaviours learnt by observing others, adjusting the way we speak to match the tone of others, learning through watching TV programme or practicing making certain facial expressions.

At school, I often felt different to everyone else. Micro insults meant that I changed my behaviours. Small comments led to me fine tuning my behaviour to eradicate anything that made me appear different. These habits became ingrained in me.

Some ways that masking may be shown is:

  • Forcing eye contact (This can be very uncomfortable and also make you appear shifty or on edge if it isn’t done right)
  • Imitating friends or peers (This is often detrimental as leads to loss of identity)
  • Disguising stimming (such as using leg jerking or nail biting as more socially acceptable stims)
  • Forming a mental bank of rehearsed social cues

The result of masking can be very detrimental to autistic people. It is utterly exhausting to be constantly repressing your true self and leads to a loss of identity as well as potential mental health issues.

So if the consequences are so bad, why do we mask?

  • To succeed in school or a job
  • Avoid stigma or bullying
  • To make friends
  • To fit in
  • To feel like you belong

Ultimately, masking is a reason why many autistic females go undiagnosed and if I look back at my childhood, it is apparent that I spent a lot of it masking.

Really, it is no wonder that my autism went undiagnosed. I was visibly a bit different but not different enough to warrant a diagnosis. Something needs to change in the autism diagnosis process to enable girls to get a crucial diagnosis before reaching a crisis point.