Autism and Losing: Is there a solution?

“Don’t worry, it doesn’t matter whether you win or lose, it’s just for fun!”

This is what I told an autistic boy at a gaming event we went to yesterday, where we entered a Super Smash Bros Ultimate tournament. Meanwhile, I was conjuring up a strategy to win the 4 player Free For All battle that was about to commence.

I was responsible for the boy while we were there and I made sure he was happy and enjoyed his time. However, during the 3 minute battle, I forgot about everything else that was happening, because I had to win, no matter what.

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Fast forward to an hour ago. I have just had a huge meltdown after playing the exact same game. My brother beat me 4 out of 6 games, so I was very frustrated and I thought: ‘My brother is really, really good at the game, so I’ll just go and beat a noob online and I’ll feel better!”.

I lost my first game and started shouting and complaining that they are ‘cheaters’, ‘hackers’ and all the rest of the rubbish I say when I can’t admit someone is more skilled than me at the game.

I then lost another game.

Over the years I have learnt to stop throwing controllers and devices, so instead I let out a bellowing scream and violently contorted and jerked as if I was transforming into some form of grotesque monster. I then screamed at my brother to go away and hid under my bed covers for about 20 minutes.
That was over 2 hours ago now but I’m still on edge. I thought I would write this as I know a lot of other autistic people are sore losers too, and I wanted to try and explain what it feels like and why it happens.
Most people who know me would not expect me to act like this, as I am usually very calm and patient. But gaming is the one thing that often tips me over the edge. Though my worst reactions are saved for when I am at home, and I manage to keep it together when I am out and about most of the time.

sore-loser

Believe it or not, most of the time losing is actually a good thing. Every time you lose and look back at the reasons why, you have the opportunity to learn something new and will have ideas about how to improve next time. In this respect, losing can actually be better than winning, as if you win all the time you won’t have much of an idea about how to do better.

This doesn’t change the fact that the objective of a game is to win. The desire to win can be amplified by some common autistic traits:

  • Perfectionism – A common autistic trait is needing to do everything at the best possible standard. Any slight mistakes, errors or issues can be a huge problem. This can be useful as autistic people who are perfectionists tend to do things at a high quality. However, this also means we can get ‘stuck’ by trying to make everything perfect, when it is extremely difficult or impossible for things to be. Unfortunately (or fortunately, depending on the scenario), that is just how some autistic brains work.
  • Anxiety and overthinking – Autistic people process everything systematically, including the environment, their relationships with others and the atmosphere. The atmosphere changes with every win or lose of a game, and you need to be able to process the changes that happen efficiently to know what to do next. This is much easier to do if you win as you will feel more relaxed, whereas it is easy to get overwhelmed when you are trying to process everything and you are also experiencing negative emotions.

There’s one more important reason why losing can be difficult for autistic people, and this is related to sensory regulation:

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Above is part of a picture I drew to try and explain how meltdowns work to a parent, and I will give a brief explanation here of what a meltdown is and why they can happen often in autistic people:

  1. An important thing to remember is that everyone can have meltdowns, not just autistic people
  2. The main section of the brain responsible for meltdowns is called the hypothalamus, and there are two parts of it
    1. The Sympathetic Nervous System (SNS) – Responsible for activating meltdowns/ the fight, flight, fright response
    2. The Parasympathetic Nervous System (PNS) – Which combats the SNS and keeps you calm and content
  3. Every human being is somewhere between the SNS and PNS at all times.
    • The closer you are to the SNS the more stressed, anxious, excited and the more alerting sensory input and the less calming sensory input you come into contact with
    • The close you are to the PNS the less stressed, anxious, excited and the less alerting and more calming sensory input you come into contact with
  4. Everyone also has a ‘baseline’ between the two, which their brain chooses based on life experiences and more
  5. Autistic children who have a lot of sensory sensitivities, or who are often anxious or stressed will have a higher baseline, meaning that they are almost always close to meltdown, even when they seem relaxed.
  6. The more sensitivities you have, and the more anxious or stressed you get, the closer you get to the ‘meltdown’ zone, meaning you are no longer in control, can no longer think logically and you are in survival mode.
  7. Therefore, although everyone can reach meltdown point, for autistic people, they can happen more frequently, be much more intense and last longer.

Now apply this to losing a game.

As most autistic people tend to be anxious, they are close to meltdown already. The autistic person then doesn’t just experience ‘normal’ amounts of stress from losing, but it is amplified due to the ‘perfectionism’ and ‘anxiety and overthinking’ traits, meaning that losing just one game can easily send quite a lot of autistic people over the edge.

Autistic people also often struggle with self regulation, meaning that once they are in a heightened state, it is difficult to calm themselves again. Most people automatically self regulate, but autistic people learn how to do it through experience and practice. But when you are in a heightened state, you tend to forget this practice and it isn’t as useful as you would like it to be!

There are times when such huge negative reactions don’t happen. I want to explain the reasons for this below and also give some tips on how they could be avoided:

  1. Sensory regulation – If an autistic person is more regulated, they are calmer and much further away than the red meltdown zone. This means that the person can tolerate much more losing and be more patient. If an autistic person is getting stressed out by a game, use some calming strategies such as deep pressure, activities involving heavy muscle work and add some calming sensory input into the environment.
  2. Breaks – Sometimes you can get so hyper focused on winning that you forget how unimportant it actually is. Do you have days when you are really angry or anxious but wake up feeling fresh and wondering why you felt that way the night before? Having a break from games can have this exact same impact, though sometimes I know I have done enough gaming for the day (like tonight) and will not play until I have a fresh start the next day. Breaks are a natural way to calm down.
  3. Distractions – What better way to stop someone from getting upset over losing than taking their mind off it completely?
  4. Don’t make the objective winning – This is what I had to do to stop getting so frustrated on the dreaded game Fortnite. There are 100 people in every game and only one winner, so the odds really aren’t in your favour! One day I watched a YouTube video which said: Don’t focus on winning, instead focus on improving your in game skill by reflecting on why you lost battles, spectating the person who killed you and more. Once I developed this perspective, I was much happier playing Fortnite, and actually got much better at the game! Although there are still some instances where I want to win (e.g. against friends), and I still get quite angry during those moments.
  5. Avoid getting into competitive situations – Quite a few autistic people I know avoid competitive situations altogether because they know they have bad reactions to losing, and I have done so at times too. There are still lots of co-op and non-competitive games that are lots of fun (for example, Minecraft)!
  6. Having a good day in general – If you are having a day where you are less anxious or stressed, it is easier to cope with losing.

My final tip: GET GOOD AT WINNING 😉

You won’t have to get upset about losing if you are so good you never lose! 😉

As you can see from how today went for me, I am still learning to get better at losing, although I have got much better than I used to be overall. Feel free to share any tips or experiences you have had relating to this!

P.S. One thing I forgot to mention:

A lot of autistic people find real life really difficult to tolerate and use gaming as an escape. For some people, the online world is the only place they feel comfortable and feel like they can be themselves. Losing on online games and such will be more tolerable as autistic people are better understood and more comfortable in real life, as they will be less reliant on games!

Please let me know if any of this post needs clarifying, I wrote it very late and fairly quickly. It is now 00:23am so I am going to try and sleep!

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Autistic Children and Young People: How to Help Us

I have spent the past 12 months gathering the views of autistic children and young people: what is important to them, what their biggest challenges are and what they would like to change in their lives.

Before reading this, please watch this music video I have created, sharing the voice of some of these children and young people.

I have created surveys and questionnaire which to date over 900 autistic children have responded to, I have interviewed and spoken directly to around 80 children and have also consulted with hundreds of autistic adults on what they wish life was like for them when they were children.

There are four key themes that were identified during this process, and I would like to share these 4 themes with you.

Please be mindful this is just an overview of the priorities of autistic children and young people. More in-depth information, support and plans of action will be shared in the future.

Theme 1: The importance of self acceptance

As part of the most recent survey, one of the questions was:

“If you could change one thing about your life right now, what would it be?”

Here are some of the responses:

  • “My autistic behaviour”
  • “I wouldn’t have the conditions that I have”
  • “I’d go back in time and stop myself being born”
  • “I would be dead, or I would of won the lottery so I could fix what I see wrong with the country”
  • “To not be autistic and not suffer from mental health problems”
  • “The impact of autism on the rest of the family”
  • “To not have autism”

These responses show a very sad story. How can you live a happy life and thrive when you have learnt to despise an integral part of who you are?

Being autistic means you have to live a different life, but that different life can still be a happy one. Once children learn to accept themselves as autistic and start learning how to live an ‘autistic life’, things usually change for the better.

However, to get to that point, children need to be given opportunities to learn about autism and what being autistic means for them. Parents and professionals often attend autism training, but what about the children themselves?

However, there is a huge barrier to self acceptance. How can you learn to accept yourself as an autistic person if you are mistreated and misunderstood as a result of your differences?

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Therefore, there is a chicken and egg situation. Autistic children need to be supported with the other challenges they are facing at the same time to reach self acceptance. Here are some of the challenges young people would like support with to achieve this goal:

“If you could change one thing about your life right now, what would it be?”

  • “More friends”
  • “Not have to go to school”
  • “Wish I was more confident and less like a burden”
  • “To feel like I’ve done something right”
  • “People to have more time for me”
  • “I would like to worry less”
  • “My life understanding”
  • “Other people to understand me behaviour”
  • “To feel happier”
  • “To not be bullied”

Theme 2: School

Problems faced by autistic children and young people at school fit into four main categories:

  1. Bullying – It is widely recognised that bullying is an issue that affects the vast majority of autistic children and young people. Bullying needs to be tackled at its root, rather than the alternative of ‘teaching resilience and coping strategies for bullying’. This is the only way autistic children can truly feel safe and happy.
  2. Lack of understanding
  3. Lack of support
  4. Peer acceptance – Schools shouldn’t just strive to stop bullying. They should strive to promote acceptance of autistic children and young people so that they feel safe and secure. Research shows sense of school belongingness has a tremendous impact on future outcomes in SEN children and young people.

Theme 3: Parental attitudes and support

Just as autistic children go on a journey of discovery and self acceptance, parents must too, and they need to be supported with that.

Every parent has their goals, dreams and aspirations, and their children usually fit into that.

However, when you have an autistic child, your life may not be how you previously expected it to be.

Just as autistic children need to learn that they need to live a ‘different from the norm life’, parents of autistic children need to be taught that and given support with this too.

Parents also need to have a support network around them to help with this.

I want to share a fantastic article that Debby Elley from Aukids Magazine wrote (please check them out!) about the impact the right support can have:

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Theme 4: Loneliness and the autism community

So many autistic children (and adults too!) are incredibly lonely.

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There are three things that have been expressed by almost every single autistic child who has responded to the surveys or who I have been in contact with:

  • They would like more friends
  • They would like more social opportunities and fun things to do
  • They would like more opportunities to meet and learn from others who are also autistic

Some children I met with even helped to create the below image, which they say is the ideal ‘life cycle of the local autism community’, which is a place where they can meet other autistic children, make friends, do activities and learn from the experiences of autistic adults.

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Please get into contact if you have any questions or would like some support with anything related to the above. I will be more than happy to help.

Autism and friendship struggles

One of the things I find most difficult in life is making and keeping friends. There are two reasons why:

Reason 1: Cognitive empathy

I hope you know that ‘autistic people have no empathy’ is a silly myth.

There are actually two types of empathy:

  • affective empathy: the ability to understand how someone else is feeling
  • cognitive empathy; the ability to understand what someone else is thinking

Autistic people feel affective empathy just as neurotypical people do, but we tend to have more extreme sensitivities to this. Some autistic people are undersensitive and can’t feel it much, and some are oversensitive and can feel it much more than most people. Personally, I am oversensitive, which means that I tend to get emotionally over invested in things and people. But cognitive empathy is where most of my difficulties lie in terms of friendship.

Neurotypical people have what I call an ‘instinctive brain’. This means that knowing what to say in social situations and understanding others comes naturally. Their brain has the magical ability to just tell them what to say or to understand the social aspects of life, from what I’ve been told.

However, autistic people have ‘systematic brains’. I learn by experience. This applies to most things: understanding internal bodily sensations and what emotions they mean I am feeling, how to talk to people; and since we are on the topic of friendships: cognitive empathy.

To put it simply, if I meet someone new I immensely struggle to understand them and their point of view. As a result, I am easily tricked and scammed by people on the street.

Recently, someone told me they needed £20 to buy petrol to go and see their mum who was in hospital after having a heart attack and they said they would pay me back later if I gave them my phone number. So I gave them my last £20 that had to last me 2 days. An hour later, I realised that I didn’t have their number so couldn’t contact them, and that the hospital was only a 20 minute walk away, so of course he just wanted to steal my money. Thanks brain.

On the plus side, like I said I learn by experience. The more I see, talk to and get to know an individual, the more I understand them. If I have known someone for long enough, I eventually get up to the point where it seems like I instinctively understand that person, when really it’s just lots of practice, analysing and reflecting.

To have positive experiences with and develop friendships with people, you need to have a good level of understanding of them. You need to work out whether the person actually likes you and wants to spend time with you, whether they just say they are your friend so they can use you or they aren’t really your friend and spend time with you because they have sympathy for you, amongst a plethora of other reasons. This is without even trying to work out likes and dislikes, their personality, what it is appropriate to talk to them about, their sense of humour, what makes them angry and more. There is a lot to work out and meeting new people takes a toll.

This is before taking into account the silly things neurotypical people do too. Like not being honest and genuine so you are misinformed about how they are really feeling and ‘fluffing things up’, or when they don’t give you enough information to come to a proper judgement. Just as there are things to learn about an individual, there are just as many strange ways of using language that are incompatible with an autistic brain.

And of course people change all the time, so knowing someone also dooms you to an endless process of analysing and reflecting. All of this makes meeting new people absolutely exhausting.

Some days, I just sit in my room and avoid people all day to have a break from all of this. Other days, I come home and I am too mentally exhausted to relax, so I sit and do nothing instead of reading a book or playing some games.

By the way, the above is the process for getting to know one individual. Group situations make this process even more tiresome and difficult.

Reason 2: Reciprocity

The key to a positive friendship is reciprocity. That is making sure there is a similar amount of give and take in the friendship.

I didn’t realise until recently that in most of my friendships I was giving but not getting anything in return. People used to be friends with me because I helped them with their homework, with studying and other things like that. If I didn’t help with education, most of these people wouldn’t have even spoken to me. When I decided to stop masking so much and stop hiding the fact that I’m autistic, I realised I had to stop associating with these people. Even though I could call them ‘friends’, I was using all of my energy pleasing them without anything in return, and it isn’t fair. So now I have a lot less friends, but people I still enjoy spending time with are real friends, and I am a real friend for them too, as far as I am aware

The problem here is calculating the value of the reciprocity.

How do you put a value on the amount of positivity someone has received from the time you have spent with them? If I have had a more positive time than them, what and how much do I give to balance things out? Have they lost out by being with me because they could have spent the time doing other things? What about time itself, how much value does that have? Is the other person’s time more valuable than mine? As you can see, this gets complicated, that’s before even thinking about the smaller things, like buying things for each other, doing each other favours and even smaller things than that:

If I’m invited somewhere with someone and they’re driving, how much do I offer them for parking? If they insist they’re paying, do I still need to pay anyway so that I’m not taking too much? This sort of thing literally takes over my mind. A few weeks ago I went to Leeds with someone to watch a film premiere. Unfortunately, the parking couldn’t be paid for until we were ready to leave. This meant that I spent most of the time worrying about how much I need to pay, whether or not the there person would let me pay some money towards it and the implications of different scenarios. In the end, I got money out to pay half the cost and he refused and paid it all, and this still comes to my mind because it feels like I have taken something but didn’t give anything in return, meaning that our relationship is unbalanced.

Being autistic and anxious about most things, I try my best to make sure I get the least amount from other people and give as much to other people as possible. I refuse to let anyone spend any money on me or do too much for me, because I am so anxious about the implications this will have on the reciprocity and don’t want to comprise a positive friendship with someone by doing so. Though I am more than happy to spend most of my money on other people (as long as they don’t do it in return). The more important I feel someone is in my life, the more I hate it when they give me things. The downside of this way of thinking is that I can easily overwhelm people by offering too much, which actually happens a lot more than you may think.

I spend the majority of my spare time thinking about reciprocity. One thing that has been on my mind recently is that one of my autistic traits is being a perfectionist and as a result I am a very sore loser. The problem with this is that if I beat people in games I feel like I’m taking a lot without giving and as a result ruining a friendship, but if I lose a game I get annoyed and react negatively, which again has negative implications. I really wish I could be happy about losing as gaming can create a huge imbalance, and I’m sure it has several times. Surely if I lose on purpose for the benefit of the other person it shouldn’t really matter? But according to my brain, that’s not the case. I haven’t managed to last more than 5 minutes after letting someone beat me, before telling them I lost on purpose as my brain doesn’t deal with it very well.

I would list other things that I factor in and things I think about, but the list is endless, so I’ll move on.

Now combine reason 1 and reason 2.

When I meet new people, I don’t just not understand them, but I don’t understand their understanding of the reciprocity of our relationship, meaning I am absolutely clueless as to knowing where I stand with them and whether or not I am being a good friend to them, or they are being a good one to me.

When I first meet people who I feel are important to me or who I am developing a friendship with, they are all I can think about. I say a lot that my brain needs certainty. I need to know where I stand with people and everything needs to be in depth and clear. If not, it feels my brain is trying to complete an unsolvable puzzle. Therefore, new friends take up a tremendous amount of time and energy, not just when I’m with them, but when I’m alone. I get literally obsessed with the person with pretty much no escape. I’ve realised over the years that the only way to stop this is by seeing them lots and lots until the overthinking stops as I know them so well that my brain doesn’t have to analyse as much. This is why I’m reluctant to meet new people and it is very difficult to make friends. If I meet too many people, it stops me from being able to focus on anything, whether it is work, or just having fun. For me, the difficulty isn’t just finding people who I share interests with and who have a mutual enjoyment with me like how friendships work for neurotypical, but also all of the above.

I hope I have written this clearly enough for you to understand. Please let me know if not and I will try and make some changes.

 

 

Environmental Adaptions for Autistic People

Hi everyone,

This is literally a list of environmental adaptations (in no particular order) to make environments as sensory friendly as possible, compiled from the views of autistic people, with a few random bold words so it looks less boring. Try and get as many of these adaptations in place as possible! I hope you find this useful:

  • Availability of a quiet room/ sensory space
  • No bright hard lights. Use soft lights with dimmer switches
  • Replace white colours with cream
  • Soundless air filter
  • No or silent hair dryers
  • Light protection at windows e.g. Black out curtains. Not blinds.
  • Carpet flooring
  • No blaring fire alarms. A voice saying fire or similar instead.
  • Sound absorbing materials
  • Materials that do not reflect light
  • Reduce ambient noise (fridges, AC machines, lighting, alarm systems etc.)
  • Easy read signs
  • Simple building layout
  • Plain walls – only essentials and minimal decoration
  • No automatic flushing toilets
  • Fragrance free items
  • Not open plan, but lots of space
  • No off gassing paints/ furnishings
  • Soundproofing between walls and floors
  • At least double glazing
  • Corkboard noticeboards to absorb sound
  • Silent clocks
  • No or quiet music
  • Natural smelling toilets e.g. extraction fan
  • Low ceilings
  • No harsh cleaning chemicals – use soap and water?
  • Greenery nearby to escape to
  • Comfortable furniture
  • Natural fibres rather than plastic
  • Multiple entrances
  • Zone warnings (low sensory zone, high sensory zone etc.)
  • No draughts

Please remember that these adaptations are for people who are hypersensitive to particular senses, so people who are hyposensitive may have different preferences, but it is much safer and easier to accommodate for people who are hypersensitive to reduce anxiety and meltdowns, and give hyposensitive people the tools to get sensory feedback self regulate that do not affect others.

Please let me know if you think anything else should be added to the list 🙂

The Negatives of Autism

Usually I am very positive about being autistic. But today I want share a few reasons why I sometimes hate being autistic.

Initiation error

Sometimes I wake up and have loads of things to do, but I just don’t do them. I can sit at a desk for 12 hours straight and not do a single thing (except watch extracts of Gordon Ramsay’s Kitchen Nightmares, Jeremy Kyle, This Morning and other useless rubbish on YouTube of course). This is to do with executive functioning.

Executive functioning difficulties are very common in autistic people which can result in difficulties in things such as: initiating actions, impulse control, planning, using working memory and inhibition (the ability to block out or reduce the impact of things such as sensory input and thoughts, meaning that meaningless things can feel more important for autistic people than they do for others).

You read right, my brain actually thinks that watching Jeremy Kyle is more important than starting an assignment that is due the next day sometimes.

Setting your oven on fire because you forgot you were cooking 

Another issue poor executive functioning causes is having rubbish working memory. I forget to pass on important information at work, I forget what I have just spent the whole day doing (8 times so far this week someone has asked how my day has been, or what I have done recently, and my response has been ‘I have no idea’) and I burn lots of food when I am cooking, which includes setting the oven on fire the first ever time I used it when I was 18, because I forgot I even put something in the oven.

Now, I use constant timers, reminders and write everything down, because otherwise everything will go wrong.

It’s strange though, as I have a pretty good long term memory and remember some short term details, but not others (ask me how many kills I got in every game of Fortnite I played last night, or ask me if I have a certain Pokémon in my collection of over 1000 Pokémon cards and I can tell you, but don’t ask me what I ate yesterday).

When you don’t have enough information to solve something you “need” to solve

Autistic people strive off certainty. If we miss out a tiny detail, it can send our brains into overdrive while we try and solve the unsolvable.

Last week I was asked to go shopping at work. A few items included:

  • Apples
  • Chicken
  • Snacks

Apples – First of all, there are over 7,500 types of apple, how the hell do I know which one the person wants? At the shop I went to there were 7 different types. I’m sure most neurotypicals can cope with this, but how the hell am I supposed to choose? That’s before even getting started on how many apples they want!

Chicken – Do they want it dead or alive? Do they want a leg or a breast? Or do they just want me to go insane?

Snacks – Asking me to buy snacks is just mental torture. What does that even mean?

So I had an hour to buy a list of 53 items, 37 of which were not specific enough for my brain to comprehend, while I was in a supermarket where my phone had no signal (which I wouldn’t use to phone the staff anyway because they will probably get annoyed with me for struggling to do a task as simple as shopping, and I will get anxious because the new viewpoint they will have on me will take a while for me to understand and process). Oh, and I was worrying the whole time about what to do if I didn’t have enough money, or if I had spent too much. The stress and anxiety this caused was tremendous.

To make things even worse, TWO OF THE ITEMS ON THE LIST WEREN’T IN THE SUPERMARKET!!!

I got back with my ambiguous bags of shopping, awaiting my doom, to realise that no one really cared about what I bought or that some things were missing. Still, this experience was super duper stressful. Now apply this concept to every single time an autistic person is in a situation where things aren’t explicit and detailed enough for their needs. And trust me, there tends to be ALOT of these.

When you don’t have enough energy to brush your teeth or put on your pyjamas before you go to sleep 

This is related to spoon theory.   Sometimes, I get home and I am so exhausted from the day that I just drop all of my stuff onto the ground, crawl into bed and sleep, without getting to do anything fun beforehand.

When you can’t get to sleep 

When I eventually crawl into bed, I sometimes can’t sleep anyway because I am trying to solve something unsolvable, or my brain is busy analysing the day to the very last detail. You won’t believe the amount of times my colleagues have thought I’ve been on a night out and done an all nighter at work, when in fact I was in bed before 9pm.

Thinking of 97 things a brick can be used for in 5 minutes 

My brain is constantly in overdrive mode. Oh what I would do for a day off every once in a while. Does any neurotypicals want to swap for the day?

At uni once we had a starter activity where we had to name as many uses for a brick as we can in 5 minutes as an ice breaker. Everyone was in groups of two or more, but I did it on my own because I’m me. Anyway, the second place team scored 19 different reasons. That didn’t compete with the 97 reasons my brain managed to come up with. Did you know if you split a brick in half, and give half to a friend, it can be a fantastic token of friendship when you meet up and join them together?

Struggling to sit still

About 40% of autistic people are under sensitive to balance, and there is a high prevalence of ADHD in autistic people too. Both of these make it very difficult to sit still and concentrate. At university, I didn’t go to lectures because I couldn’t sit still for 2 hours straight. On public transport I wedge my body between seats as the sensory feedback means there is less of a need to move. This is worse in the mornings, when I need lots of feedback and need to do lots of stimming in order to keep focused on whatever I am doing.

Clumsiness 

Research shows that 100% of autistic people have some form of motor difficulty (yes you read that right). When I go to a training course, meeting or other similar event, I don’t introduce myself first, I say “I’m sorry in advance if I knock the table and spill your coffee”. I also say sorry at least 30 times a day. Even if someone bumps into me and it is their fault, my brain is at the point where it must apologise for EVERYTHING because I am so used to being the culprit. I actually said sorry to someone a few weeks ago after they punched me in the face.

 

By the way, having a negative post like this doesn’t mean I am not happy with who I am. I think to be self accepting, you need to accept everything; both the good and the bad.

Please also remember that since autism is a spectrum, so not all of this applies to every autistic person!

Sorry if this is a big grammatically incorrect or seems rushed. My battery is low and I wanted to publish it before I make my way home and either forget I wrote this or struggle to finish it off. I may make some corrections in the future, or I may try but end up watching some more Jezza Kyle. We’ll see.

Autism and Loneliness (#TakeTheMaskOff)

You never realise how lonely you are until it is just you, your thoughts, and time. 

I spend most of my time escaping from reality so that I can avoid my thoughts and feelings. Whether it is gaming, reading, watching films, listening to music or getting immersed in the world of imagination.

But every once in a while, I just sit here, thinking about how alone I am. I tend to have a lot on my mind, but no one to talk to about any of it. In everyone else’s eyes I am happy, carefree and confident. In reality, I feel lonely and empty. Most people in my life don’t know the real me.

Today, I sat in a café that was completely empty. And I thought to myself, as I do every now and then, “What would happen if I just disappear right now? No one knows where I am, and no one really cares”.

Lonely is not being alone, it’s the feeling that no one cares.

There’s only one place where I truly feel at home, and ironically, that is at work.

I currently have few jobs. I work in a school, at a children’s home and in the community.

In each of these jobs I work directly with autistic children, and I love it. At work I feel appreciated, and the kids are actually happy to see me. I talk to the kids about what autism is and what it means, we play games, learn together, grow together and most of all, we have lots of fun. The kids actually want to spend time with me, rather than me feeling like a burden that doesn’t deserve anyone’s time or energy. I can also be myself at work.

Some people say I work too much. Others say I’m over-enthusiastic and need to chill out. But my work is all I have. As soon as I get home, I’m plunged back into reality, unless I use one of my escape tactics to delay thinking about how rubbish life is. I think I’m the only person I know who goes to sleep excited that I am working the next day, because I don’t have much else to look forward to.

It’s so lonely when you don’t even know yourself

After 20 years of masking, I’m not really sure who I am at times. This is reflected in my social life.

I have lots of ‘friends’.

But of course, they aren’t friends with me, they are friends with the masked version of me. The guy who is really funny when he is drunk, or the sarcastic overconfident pleb who talks rubbish all day.

Let me introduce you to the mask:

Hey Andy, tell me some of your interests

Playing Nintendo games, collecting Pokémon cards, going to random Cafés where I can sit and think about life, working, reading books, learning about autism

Getting drunk and playing games, what else? 🙄

What are some of the turning points in your life?

Some of the turns on Rainbow Road on Mario Kart are DEADLY

Realising I need to stop masking

Meeting you is the main one obvs lol jk xoxox

If you had to live without one of the 5 senses, which one would it be?

THERE ARE 8 SENSES!!!

Sight because I’m fed up of looking at you lol I’m so funny please like me

Real loneliness isn’t being alone, it’s being surrounded by the wrong people

I wonder how different and how much happier I could be if I didn’t mask and I was myself from the beginning. If I had friends who actually shared my interests and if I didn’t have to put on an act whenever I was with them.

Now I don’t put on my mask as much, and as a result most of my ‘friends’ don’t want to know me as much, and why would they? I’m not who they think I am, and they aren’t the right people for me. And being autistic doesn’t make finding new friends particularly easy.

Nobody ever tells you that emptiness weighs the most

Humans are social beings. We need to build relationships with others and have a sense of belonging to be happy. Without these, what’s the point in life?

We’re born alone, we live alone, we die alone. Only through our love and friendship can we create the illusion for the moment that we’re not alone.’ – dunno who

I believe this quote explains why autistic people mask. We want to trick our brains into thinking we are loved and cared about. But loneliness isn’t just a physical entity, but an emotional one. If you aren’t true to yourself, you can have a life full of other people who may appreciate the act, but emotionally, you are just as lonely as you have always been. You can have happy moments when you are with others, but then when you get home feel just as lost and empty.

There is only one way to stop being alone emotionally, which is the type of loneliness that matters. That is by being yourself, and making connections with people as your true self. The way to do this is to #TakeTheMaskOff – search this hashtag on social media to learn about what it means according to other autistic people.

This has its problems too of course. How do you know people will love the real you? What if you’re not good enough for anyone? I’ve felt like this, and I’m sure you do sometimes too. I have a couple of close friends I am open with, but even with them, I won’t talk to them about my deeper feelings because I fear it will make me lose them.

I guess it’s just a case of hoping that there is at least one person out there who likes you for who you are. Considering there are over 7 billion people in the world. I think the chances that that person is out there is incredibly high. They just need to be found.

Don’t forget, everyone in the whole world is on the path to self acceptance and has their good days and bad days. So next time you are feeling lonely and isolated, please remember this:

‘Loneliness is the unloneliest feeling in the world, as everyone has experienced it.’ –another person I don’t know

Anyway, back to playing Pokémon

What is wrong with the autistic community?

I hope my message comes across properly. I spent 20 minutes writing this before going to sleep because I really needed to get it off my chest.

Around this time 6 months ago, I was at my student house on my own as everyone else had gone home for Christmas. I was desperate to hide from the world that I hated.

On Christmas Day while everyone else was opening presents, having dinner with friends and family and sharing love and Christmas cheer, I was sat on my own in a dark room, eating tuna straight out of the tin with a bottle of wine on the side.

I felt hopeless, desperate and alone. No one understood what I was going through, and I wasn’t sure how much longer I could go on for.

I didn’t go to or flopped each of my university exams. I barely even left the house except to go and visit my little mate, an autistic non speaking boy who I felt was the only ray of sunshine in the world at that time.

Fast forward to mid-January when I bumped into the fabulous Kieran Rose on Twitter (I spent most of my time during this period on social media) and he introduced me to the online autistic community. From that moment, my life changed for the better. I reached out in a Facebook group for autistic people, and I got responses from dozens of autistic people who had either been through what I was going through, or who were currently going through it with me.

That night I didn’t sleep. Not because of stress and anxiety like every other night of the past month or two, but due to excitement and hope. I finally found a place where I belonged and it felt amazing. At the same time I met a group of passionate autistic advocates who are fighting for a better future for all autistic people. A group I am proud to still be a part of.

However, as I spent time discovering myself and building bonds with people in the community, I also saw some things that weren’t as pleasant. There were other people who were opening up, but rather than being welcomed, they were attacked for using the wrong autism terminology, for saying they struggle with being autistic or because they were sharing success stories of other autistic people. This wasn’t the community I signed up for. If this was the response I got after opening up, my life would have followed a completely different path. I hope that these people have all found a place where they feel happy and supported.

I get it. Having to deal with people talking about curing autism, harmful practices and other nonsense online constantly can get really frustrating and can leave us short tempered, when we are simply trying our best to support autistic people. But for some people, the online community is all that they’ve got, and they have as much right to be a part of it as you do, just like their views are just as valid as yours.

You might not like posts that are positive about autism. That’s ok. But that doesn’t mean that I can’t celebrate being autistic every once in a while and maybe also spread some positivity for people who need a little something to brighten up their day.

You may not like it when people say they are struggling with being autistic as you believe autism should be celebrated. That’s ok too. But I am still allowed to struggle and search for others who are also struggling that I can empathise with.

It can be frustrating when people use the wrong terminology to refer to autistic people. But this doesn’t mean they deserve to be left feeling ostracised by the only group of people they may relate to. They are on their own learning journey, just as you are still on yours.

In real life, I visit a lot of autistic children and their families and provide advice and support. There is one thing I say to everyone I visit:

“The most important thing for you to do as an autistic person is to stop comparing your life to the life of others. Only then can you learn to accept yourself and be happy.”

I think this statement applies to the autistic community too. People are different and as a result will have different views, and that’s ok. Sometimes their views will change over time and become similar to yours. Sometimes they won’t. Either way, how they think and feel is a direct result of their life experiences. Their view is just as valid as yours, so as long as they aren’t causing harm to anyone, please let them be. How boring would the world be if everyone thought and acted the same way anyway?

I receive negative comments about some things I say too, and as a result I sometimes question whether or not I actually belong in the autistic community. I know a lot of other autistic people also feel the same way I do.

If you see something you don’t agree with that is written by an autistic person, please try your best to just ignore it. Think about how much energy you’ll save my moving on and thinking about something else. If that doesn’t work, think about the other person. You don’t know what they’re going through. They could be desperate or worse, and one comment can have a much bigger impact than you may think. Your time would be much better spent writing something positive to someone else.

We are alone enough in the outside world as it is. PLEASE help to make sure we as a community have at least one place where we can unite, support each other and communicate with others who understand. Otherwise, future autistic people may not be as lucky as I have been this year.