Day to day ability fluctuations

Yesterday, I got home and did nothing. I lay in bed with the same song on repeat, thinking about the meaning of life. I was in overthink mode and had no energy to do anything.

I didn’t even have the energy to play a game on my Nintendo Switch or to pay attention to a film, and that’s saying something.

I woke up this morning with my earphones in and a phone under my pillow with no  battery. It must have been a looooong, thoughtful night.

But today was different. When I woke up at 6:30am and felt amazing.

I replied to 5 weeks worth of emails I had deferred due to not really feeling able to respond, wrote half a blog post (coming soon), plus had 2 lots of breakfast and had a bath before I was picked up at 9:05am for work. Recently I’ve been struggling to even manage breakfast.

I got home from work at 4pm and I was oozing with energy. I went shopping, went to the gym for the first time in a month and started writing a new presentation. Right now, I am effortlessly writing this whereas it usually takes  a lot of time and thought. I even managed to tidy my room today (I usually keep it very clean, but never tidy) and had time for a one man party in my kitchen which the neighbours probably heard.

Some days autistic people can have very low amounts of energy. Things that may seem easy to you like washing the dishes or making your bed can feel like Mission Impossible to us sometimes. Other days, we are like superheroes and can do anything and everything.

I’ll use my bedroom as an example. I have had such low energy over the past few months that I have felt completely unable to tidy it. It got to the point where it was an absolute mess, and no matter how badly I wanted to tidy it, I couldn’t. It just felt like it was impossible before I even started, and my room ended up looking like this:

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I agree – it’s horrific.

Just to be clear – I am a clean freak. When I’m at my student house and my mum can’t tell me off for using too much water, it isn’t uncommon for me to have 4 showers a day. I also sanitise my hands before I eat anything (even if I’m not using my hands) and spend a lot of time cleaning, including completely washing my phone and iPad every day. But when I have no energy to function properly – whilst cleanliness is essential, tidiness isn’t.

Thankfully, my mum took the time to tidy it all up for me about a month ago and I have managed to more or less maintain it since.

My point is, our ability to do things fluctuates from day to day. I’ve had a lot more bad days than good recently, so I have been holding it all together at work then been unable to do much when I have got home. But I have still had my good days where I have been able to be productive and super energetic.

The problem autistic people face, is when we can do something on a good day, then we are expected to do it every day. I’m sorry, but that’s not how it works. Today, I could have easily jumped on stage and twerked for the nation if I was asked to. Yesterday, you probably wouldn’t have even got a reaction from me if you slapped me in the face.

I haven’t quite worked out properly the reasons for these fluctuations yet.

I think one major reason is spoon theory (Click on the link to read about it as I cant be bothered explaining lol).

Another big thing is that us autistic people tend to overthink a lot. It feels like the worry, negativity and analysing physically drains your energy and stops you from doing over things.

Today, compared to most other days, I woke up with no worries and nothing to overthink about. I have had a rough few months after revealing to everyone that I am autistic and completely changing my life, and maybe I’ve finally got to the point that I can stop being super anxious and start being productive again? I really hope so.

It’s quite a strange phenomenon, when you feel like you are being physically drained by your thoughts. I wonder if this happens with neurotypical people too (please let me know)? I often have debates and discussions in autism support groups on Facebook, and I can feel the energy being absorbed into my phone (unfortunately, this doesn’t charge my battery). I’ve started leaving my phone at home recently while I go out and go to the gym, and it has made me feel quite refreshed.

Of course there are going to be more things that come up that cause stress, anxiety and all the rest of that rubbish, but I’m hoping there isn’t anything for a while so I can carry on being productive and useful – if that’s how I wake up. I’ll have to wait and see.

Other than the two possible explanations above, it is quite surreal and difficult to understand. Please let me know if you can shed any light on this, and then I’ll update this post.

Either way, my point remains. We can’t always do what we usually do every day. If an autistic person says they can’t do something, please respect what they say, no matter how ridiculous it may sound to you.

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To the people who don’t know that I am autistic

I am autistic.

A lot of you will not have realised this, and it hasn’t really been that important that you knew until recently.

By the way, Eminem, Bill Gates, Alan Turing, Daryl Hannah, Albert Einstein, and even the inventor of Pokémon is autistic, to name a few. Are you surprised?

To put it simply, autism is a different brain wiring that affects your perception of the world, and how you communicate and relate to other people.

Being autistic has a lot of advantages:

  1. I have a great memory – Though this is also selective – My long term memory is fantastic and I’m good at remembering random facts, but my short term memory is shocking and I forget little things like remembering to get my food out of the oven!
  2. I’m a good problem solver – I have unique thought processes which mean I can come up with innovative and creative solutions.
  3. I’m really good at Maths – It’s a common misconception that all autistic people are good at Maths. But I’m one of the people who is.
  4. Autistic people are often really blunt and honest – If a dress makes you look fat, I’ll tell you. Sometimes people get offended by my honesty, which I think is silly. Why ask if you don’t want to know the truth?
  5. I’m great at reading people – After talking to someone for 5 minutes I know whether or not they are nice and genuine and whether I will get on with them. There’s no wishy washy stuff and no in between, I quickly either like someone, or I don’t. Though I have to admit, I have been wrong a few times in my life.
  6. I’m not afraid to speak out or be different – I’m weird and irritating, but I don’t really care what other people think about that. I’m just being me.
  7. Autistic people have more capacity to store and process information – I can excel in something if I focus all of my energy on it – I got good grades at school and college and this is probably why. This is probably also why I’m absolutely sick at COD.

(I couldn’t work out how to upload Xbox One game clips so this is the best I’ve got for you soz)

So why am I writing this? 

I am happy with who I am and do not want to change. But being autistic also has its disadvantages.

A big difference in autistic people is the way our brains work. For me, socialising is not instinctive but instead a logical process. When someone asks me a question, I have to analyse the question and logically work out the best response based on responses I have used in the past, responses I’ve heard other people use and the reactions to these, as well as analysing the person’s tone of voice, body language and their current behaviour compared to how they usually act and how other people act too. For neurotypical people, this is a process which happens unconsciously, making interaction a lot easier, but for autistic people, it’s not that simple

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An example of how social interaction works for autistic people

This doesn’t just apply to socialising, but to theory of mind, recognising emotions, giving the right eye contact and more. Luckily, I can usually do this process quickly enough to appear ‘normal’ and more or less fit in.th

But as you can probably imagine, doing this every day during every interaction is bloody exhausting.

Sometimes i cheat and use the same learned responses so I don’t need to process as much. Whenever someone says ‘how are you’, my go to response is ‘I’m alright thanks how are you?’ no matter how I feel, just to save a bit of energy.

So I have been doing what everyone else does. Going on nights out, socialising and whatever else every day. But then when I’ve gone home I’ve needed time to rest and get my energy back to repeat the next day because of the extra work involved for me.

But recently it got to the point where I couldn’t do this anymore. I started using more energy each day than I could recover each night due to taking up more commitments like working more and studying at university. I started to decline, started to withdraw and started feeling more and more worn out. As this happened, I started eat less, sleep less and started getting even more anxious that usual (autistic people often experience anxiety) which had an even further negative impact.

In December I hit rock bottom. As a result, I failed my university exams and I was pretty miserable. This is when I realised that I need to change how I live my life.

Now I’m having a break from university and starting semester 2 again in February next year so that I have time to get back on track.

I’m also going to stop trying to hard to fit in and start being myself more. This starts by letting everyone know that I am autistic.

If I say no when you ask me to come out or to meet up, it’s not necessarily because I don’t want to, but it could be because I don’t have enough energy on that particular day and need some time to recharge.

The things that I am expected to do, like fluff things up and not be blunt and honest, to give the right eye contact, to get a degree and get a good job, to stop gaming and ‘acting like a child’, I’m not going to conform to anymore.

Everything I do will be for me. I’m going back to uni in February. Not because I am expected to do it, but because I want to. And if it doesn’t work out or I end up not going back and people are annoyed with me or judge me because of it, I don’t care.

People expect me to message them every now and again for pointless small talk, but I feel like it’s exactly that – pointless. And it uses up a lot of energy. Sorry if you get frustrated when I don’t get into contact, but it’s important that I preserve my energy and it doesn’t mean that I care about you any less.

For the past few months at home I have spent all of my time with headphones in, avoiding conversation and being alone. I’ve also been quickly angry or frustrated when people have tried talking to me, asking questions or initiating some draining small talk. It isn’t that I don’t want to spend time with anyone, it’s that I need time without interaction so that I can function properly when I am doing important things like when I am at work. I will still talk to you and we can still go out and do activities, but only when I feel like I can. Though I have to admit I haven’t felt able to do much recently, which is why I need to start doing more to get back on track.

To everyone reading this, I’m still the exact same person. You probably won’t even notice any difference in me and you’ll probably still see me as the exact same tool who’s shocking at football (even though he loves it) and has the worst voice on the planet. I just won’t be doing everything the way I’m expected to anymore.

(I really wasn’t lying when I said I cant sing!)

Don’t forget that I am just one autistic person. Every autistic person is different and unique in their own way. Don’t judge them based on me, and don’t judge me based on them. We have similar thinking styles and have some of the same challenges so we can relate to each other a lot, but we are still individuals. Just like every neurotypical human is completely individual.

 

 

Autism and the Inevitable Negative Thought Process

I was really frustrated with myself yesterday, so I wrote to myself. But I thought I would share what I wrote so that at least something good will come out of it. I will give an explanation after the notes I have written:

I really hate myself right now.

 

At 5:15pm I was in Manchester City Centre walking to the bus stop to go home, and I saw a boy with his arm round a slightly smaller boy, who I will call Bob, with 4 others walking behind them. They all looked 15/16.

 

They were walking on the other side of the road to me, but everyone was glancing in their direction. There were lots of people about. I turned my music down to hear what was happening and I heard “Get the fuck off me!” come from Bob, who had tears in his eyes, but he continued to walk with the boys.

 

I stood there and watched as people looked, walked off and completely ignored what was happening.

 

always intervene when I see a situation like this, but this time I didn’t.

 

My laptop is in my bag and I don’t want it to get taken 

 

I was kicked in the head while I was volunteering today and my head is spinning 

 

My bus is due soon 

 

I’m super skinny and I have never even had a fight before, what use am I?

 

They all look tougher than me and look quite scary 

 

I’m hardly intimidating, I’ll probably just get myself beaten up to

 

I froze.

 

I looked around at the other people, to see if there was anyone who might back me up, but I didn’t see anyone who looked like they could. I didn’t do anything.

 

I walked off and went to the bus stop.

 

How could I be so selfish? What if today was the last straw, and he has gone home after being beaten up and killed himself? All it could have taken was one person to reach out and save his life, but they didn’t. If he kills himself after this, it’s all my fault.

 

But there were others round, someone who is bigger and stronger than you will have helped him.

 

No Andy, you know about the bystander effect. You know better than that. 

 

But you’re skinny and weak Andy, they would have just laughed, beaten you up, and stolen all of your stuff.

 

That’s a risk, but if I caused enough commotion, they would have ran off and people would have got involved. Why didn’t I take a picture of them and send it to schools in the local area? Why didn’t I call the police? 

 

One person being beaten up is better than two.

 

No, it’s not. Sometimes all someone needs to transform their life is to know that at least one person is there for them. It would have been worth it. 

 

Maybe they aren’t even going to beat him up, maybe they have planned something worse, and I could have stopped them. 

 

I have spent the past 6 hours doing nothing but going through that one minute in my head over and over again. Thinking about everything that could have happened and everything I could have done to make the situation better, and I am ashamed of myself.

 

Surely I should be the person who does reach out, after having times when I have felt lonely and isolated myself and being grateful for the few people who have been there for me. This was my opportunity to return the favour.

 

I vow to never get so anxious or scared that I do not intervene again. No one deserves to feel so alone when there are so many people around, and no one should have to go through suffering at the hands of others when people are able to help.

 

This is going to be on my mind for a long time. If I am short tempered, ignorant or I am not focusing on much, I don’t have anything against you. It’s because I am angry with myself.

This moment is still heavily on my mind, but despite hating what I have done, I have decided to share it as a way to explain the reasons for the negative thought process of  a lot of (but not all) autistic people.

Two things play a key role in the thought processes of autistic people:

  1. The need for perfection
  2. The hate of uncertainty

Everything I do needs to be perfect. If it isn’t, I get frustrated and anxious about how others might view it. If I don’t get full marks on a test, I get frustrated. If I don’t win a game, I go crazy. I will do the same thing and rewrite and reword it over and over again until it feels satisfactory. I hate being in charge and having lots of responsibilities, because then it’s up to me to make things perfect, and I’m a failure when they aren’t. If I do something that isn’t perfect, I get really anxious about the response I get. I have to force myself to submit blog posts because my heart wants to keep them true but my brain wants to make sure I word them perfectly by editing them over and over and over again, which will take too much time and energy. Also, every little mistake I make, I can’t stop thinking about. Why can’t I just do things right?

Uncertainty is also a massive burden for autistic people. If there is uncertainty, my brain feels the need to get rid of it. If you say my work is ‘good’, this gets me stressed and anxious, as I need to know exactly what it means in order to move on. ‘Good doesn’t give any information and people often say it just so that they don’t hurt your feelings. I need to know the positives and negatives, as well as how to improve or this will get stuck on my mind and stop me from focusing on what I would like to. This need for certainty applies to almost everything. If I meet someone new, I often struggle to understand what their view is of me and need to spent quite a lot of time with them to see where I stand with them, or I spent a lot more time trying to work it out to no avail due to lack of information to analyse. It is much easier if people are blunt and honest, but a lot of neurotypical people aren’t and it is infuriating. The problem is it’s usually very difficult or impossible to know unless I ask directly, which I have started to do more to save energy even though it isn’t socially acceptable.

I can’t underestimate how much time is spent doing this. I can conform and fit in when I am out and about, but when I am at home or I am alone, it takes over my mind and stops me from doing what I want to do. I often go on walks alone so I can focus on processing this information and nothing else. Occasionally I have days avoiding everyone and staying on my own. Not because I want to avoid people, but because I want to avoid the aftermath.

Often, I look like I’m  relaxing when I lie down and I listen to music, or I sit playing a game. But I’m not, I’m recovering. There is a big difference. I very rarely feel able to actually relax because my brain is constantly on the go. We need time to process things, to self regulate, to calm down, to recover and to prepare for tomorrow’s onslaught.

 

What happened here is a big example of one of the negative thought process. My stupid mistake makes me feel like a complete and utter idiot. Why didn’t I do the right thing? The uncertainty is that I don’t know if that boy is going to be ok after my imperfect decision. I don’t feel sorry for myself because I deserve a punishment for not helping, but it takes a toll on me and now I can barely function. How I feel right now, is how a lot of autistic people feel about a lot of things, even if they seem very minor to you or if it isn’t as important an issue of what I have just written about. This effect is very common for me, but this is one of the few times where I feel it is actually deserved.

The constant uncertainty and need for perfection in most contexts and scenarios is debilitating for autistic people. It makes life a hell of a lot tougher. This is why I have started to tackle uncertainty at its root cause, otherwise I don’t have enough energy to do important things, like eat or get a good nights sleep. When I have known someone for a while and we know where we stand with each other, I don’t need to strive for certainty as much and I feel comfortable and happy.

If your child is angry, aggressive or violent, it may not be your fault, and they may not be acting ‘naughty’ or being ‘selfish’ either. If I didn’t write this, people would have no idea why I have avoided everyone and had a short temper today. It’s important to be calm, patient and positive even if you are unsure why your child is acting the way they are. There is always a good reason.

I truly hope that someone spoke out and helped Bob, and I really hope that everything works out well for him.

 

When I got off the bus last night, I saw what looked like a man and a little girl fighting.

I wasn’t going to back off this time. Especially since I was angry with myself and felt like I needed to redeem myself after what I had done. I walked slowly behind them to get a better understanding and turned my music down and heard the girl screaming. I went over and asked what was happening. It turns out this time it was nothing serious. It was just a teenage boy and his little sister playing…

Or was it?

 

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If only it was this simple…

 

 

 

 

 

 

 

 

 

 

 

 

 

The Ideal World for Autistic People

7:29pm: So I’m sat in a café, ready to start my university assignment that is due in 5 days.

I start my usual routine. I turn off all of my devices, I get my infinity cube out and put it on the table, and I get all of the relevant Power Point slides and notes loaded up on my laptop.

Oh wait, music. I can’t concentrate without my music.

 

I can’t listen to my usual music when I need to concentrate, so I decided to look on YouTube for something appropriate.

 

I then proceeded to put on one of the most amazing pieces of music I have heard, which inspired me to write this. You can listen to the song here. 

I’m thinking back to Sunday. I went for a carvery with one of my mini mates, a non-speaking autistic boy who I care a lot for, plus his mum and some of their friends. He is very sensory and likes sipping his drink and spitting back into his cup. He was doing this in peace but then everyone’s attention turned to him. He noticed, paused for a moment, then burst out laughing. So did everyone else. He then started doing some fancy spitting tricks to impress everyone, and no one stopped laughing, including himself. In those few minutes, there was nothing else that mattered in the world. Everyone was happy and it was beautiful.

 

I’m thinking back to Saturday. I went swimming with some of the kids at work. We were in our own world – fighting each other and transforming into ninjas, Pokémon, random memes and more. No one stopped smiling, and it didn’t matter what anyone else was thinking, as we were all enjoying the moment together.

 

I’m thinking back to Wednesday, when I received lots of positive feedback and support when I revealed that I am autistic through my first blog post. I was relieved that people have accepted me for who I am and I had a huge smile on my face.  

 

I’m feeling grateful for the great times I have had, and the great times these children have had too. Life isn’t that bad is it?

 

 

7:55pm: Then the negative thoughts start to creep in.

This isn’t how it always is.

 

In those individual moments, everything was perfect. We all accepted each other for who we were. We could block out the world, and we could enjoy each other’s company.

 

But my mini mate won’t always be in an environment where everyone accepts him and cares a lot about him, as much as it hurts to say.

 

It won’t always be acceptable to have Pokémon battles in the middle of a swimming pool. These kids will eventually grow up and will be judged unless they conform and hide themselves behind ‘the mask’.

 

People have told me that they are happy I have opened up about myself, but what about the others who haven’t? My mum doesn’t accept that I am different, and expects me to do what she wants me to. If I don’t, I am not good enough for her…

 

 Right now, I am not good enough for her.

 

These moments are brief and don’t last. I wish I could stop time so that the happy moments would last forever where there is no judgement from outsiders, where it didn’t matter what other people think and where everyone could be happy.

 

 

8:05pm: I try to get back to reality.

I have an assignment due soon that I can’t face completing. I want more time to rest and recharge after my recent burnout.

 

Why am I at university anyway? Oh yes, because my mum forced me to go. I am now over £40,000 in debt, and super stressed just for my name on a piece of paper.

 

‘You need a degree so that you can get a good job and make lots of money, then buy a nice house and a car’.

 

‘You need a good job and a nice house so that you can be happy and so I can be proud of how far you have come’.

 

But I don’t want any of that.

 

I am happy right now. Why can’t the world just stay how it is?

 

Why can’t I put the world on pause and let each and every positive moment last forever?

 

A good job, a nice house and a car won’t make me happy.

 

What would make me truly happy in the future would be to wake up with a smile on a face knowing that I am accepted for who I am. I want to be able to freely go to the library all day and read books and learn about the world. I want it to be ok to not want to socialise, and to be able to just walk through the countryside on my own, or to spend hours playing a game with no pressure to work or study. I want a world where I tell my mum everything about me, and she says she still loves me no matter what.

 

But I don’t just want a world where I can be happy being me. I want a world where others can be happy being themselves too. The only reason I am at university right now is because I dream of being a sensory occupational therapist, who can help autistic children who are struggling in a world that isn’t made for them. But it takes years of irrelevant learning and exams to be able to start the sensory modular pathway. Why is this piece of paper so important? University life consists of reading books, and answering questions based on the books. I have read most of these books, why can’t that be enough?

 

I want a world where I can see people running through the street, flapping their hands, and spinning in circles, with no glares or judgemental looks. I want a world where people listen to you and respect what you say. I want a world where people ask “How can I help?” rather than saying “You need to act your age” or “He just needs a spanking”. I want a world where everyone is accepted.

 

 

8:25pm: There is too much hate in the world.

I hear about parents trying to cure their children of autism by shoving bleach down their throats (this is still happening in the UK today). I hear about parents loving their children, but ‘hating their autism’. I see children in ABA therapy being forced to conform and subliminally being taught that being themselves is not ok.

 

I see schools saying autistic children are a problem, and trying to move them to other schools so they don’t have to deal with them. I hear about autistic children being miserable due to being bullied and mistreated. I speak to autistic people who are on the verge of killing themselves because they have to hide themselves, and use all of their energy to try and fit in. Imagine living your whole life knowing you’re not good enough?

 

 

There is one word that is key to all of this. Not just the happiness and joy, but also all of the pain and suffering. That word is acceptance. 

 Autistic people need to learn how to accept themselves. Self-acceptance is key to a happy and prosperous life. But you play a role in this. Without the acceptance of family members, without understanding and acceptance from school or work, while an autistic person is a ‘person with autism’, which essentially neglects their identity, they aren’t being helped to accept themselves. 

The ideal world for autistic people is one where they are accepted by everyone, with all of their strengths, differences and flaws. Right now, we are a long way off. Self-acceptance and acceptance in your own network and little groups is the best we can get. This isn’t perfect, but it is the best we can have, and this is enough for autistic people to be  reasonably happy. Every autistic person, parent and professional should strive for this. Autistic people don’t need autism awareness, they need autism acceptance. In the long term, hopefully everyone will learn to accept not just autism, but all differences.

For now, it doesn’t matter if you or your child doesn’t fit in with societies expectations. This shouldn’t be a barrier to your happiness. Autistic people, be yourselves. Parents, allow your children to be themselves and thrive by embracing them and showing them that you are there for them no matter what. 

The world is horrible and people are awful. Innocent autistic children who come into this world with hope and love don’t deserve mistreatment and cruelty. Every individual autistic child is perfect and beautiful and deserves kindness and respect. Why does the world have to be the way it is? 

I’m not sure if we will ever get to a point where everyone is accepted for who they are, but wouldn’t that be ideal…

9:12: Wait, don’t I have an assignment due on Monday?

*presses the publish button*

 

 

16 Things No One Knows About Me

Some people know me as the confident, athletic guy who has a bit of banter, and is ‘one of the lads’. Others know me as the guy who did well at school, and who is quite quiet but also academic and hardworking. Others know me as a childish and annoying numpty – but who uses this to his advantage to develop good relationships with the kids at work. 

But they don’t really know me. I guess this is part of my mask. I’ve decided I am going to start being myself more after going through burnout, so I thought I’d start by sharing who I actually am, by telling you 16 things that no one knows about me.

1. I hate uncertainty

If you asked me whether I want to be punched in the face right now, or wait a month and then have a 50/50 chance of being punched in the face or being given £10,000, I would be in hospital with a broken nose.

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Did I lose out on £10,000, or is this after my friend accidentally punched me in the face? You decide

Neurotypicals tend to be quite abstract and wishy washy, or don’t tell the truth so they don’t hurt your feelings. This drives me crazier than anything else in the world.

If I ask you a question, please give me a straight reply. I appreciate all feedback, positive and negative, so that I can learn. Neurotypicals seem to work differently – I have offended LOTS of people when I have tried to be helpful given honest feedback. I can ‘fluff things up’ if I try, but that takes lots of time and energy, so I don’t do it often, and I think it’s counterproductive anyway – Why ask a question if you don’t really want to know the answer? Please don’t take it offensively if I am being honest.

My hate of uncertainty also means I don’t really answer the phone, unless I know in advance exactly why I am being called. If it’s important, they should leave a voicemail!

2. I hate compliments

‘You are great Andy’

 

*Face transforms into a tomato*

 

*Brain gets overwhelmed and short circuits*

 

*Sits awkwardly and pretends I’m invisible or lets out an embarrassingly awkward little giggle*

Compliments and feedback are important to know whether I’ve done a good job or not, but that doesn’t mean I don’t hate them. If for some reason you want to compliment me, please compliment my work rather than me. Or even better, just let me know you don’t expect a response from me. I can’t even work out appropriate responses over text when I have all the time in the world to come up with something, never mind in person!

3. I am a perfectionist

Don’t ever beat me on a game, I will SCREAM. I am a really, really, really, really, really sore loser.

I feel the need to do everything to its best possible standard and get frustrated when something isn’t perfect, even though nothing ever really is…

4. I have trouble recognising people’s faces

I believe it is called prosopagnosia where you struggle to recognise people’s faces. Even if I have known someone for years, my brain can be unsure about whether it is actually them or not. I find it easier when someone has a really distinct feature or two.

 5. I am terrified of getting people’s names wrong, even if I am certain I know what they are

Not recognising faces affects my ability to say people’s names and introduce them. I know you, but my brain thinks I don’t and this puts me in doubt. My favourite line is ‘This is idiot, and this is even bigger idiot’ when I am introducing people. To them I’m just being my usual, annoying self who thinks he’s hilarious, but really I just don’t want to say their name in case I get it wrong, even though I won’t, if that makes sense?

6. I don’t like eye contact

If I feel comfortable I can easily give eye contact.

If I am not comfortable, I have learnt how to give eye contact, but it feels awkward and irritating. It also takes brainpower to consciously think about where my eyes should be looking and when. If you stare too long it freaks people out, and if you don’t stare enough you look dishonest. It’s a difficult skill to master!

I can focus and listen better if I am not giving eye contact, so don’t take offense if I don’t.

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7. I hide my stims a lot

I have an infinity cube that I take everywhere. I don’t need it unless I’m in a new or unfamiliar situation, but then I need it. I also feel a lot calmer in new situations when I can freely walk back and forth.

I rock sometimes too. But rocking also makes me feel dizzy and get a headache really quickly! It’s strange, I seem to be both under and over-sensitive to vestibular input. I get dizzy really easily and those weird swirly stairs are a no go for me, but I also crave lots of movement. People who know me will also know that I constantly move and twitch. I look like I am desperate for a wee most of the time.

Did I mention I have non-existent finger nails from chewing them too?

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The Stairway to Hell. These staircases are awful

8. My mind is really, really intense

Sometimes, I go on walks alone just so that I can focus on nothing but dealing with my intense thoughts. Even when I am relaxing, I don’t feel like I am because my brain doesn’t stop.

If you’re talking to me and I look like I have lost focus or started daydreaming – I probably have. If something captures my attention, whether it is something in the environment or a thought, my mind has a tendency to block out other things so that it can focus on this.

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9. I love being alone

Because people are awful. Jokes.

It’s not that I don’t want to socialise and meet people. Every human being has an innate desire to socialise. But it is hard work, and I would much rather spend my time becoming a Pokemon master or having a one man rave in my bedroom.

I go out as much as I can so I don’t forget that other people exist, but on some days I don’t have the energy. Though I do have to admit some people take a lot more energy than others.39b6670e3aaa0dde68544006485fa98025b6538d6b5d62aa6149d2450d1b5e7b

10. I love Pokémon

I tend to keep this a secret, because I’m supposed to be too old to like Pokémon, but I have started being more open about it recently. Tyranitar is my favourite Pokémon (closely followed by Garchomp). Tyranitar is a bit on the slow side, but that’s what EV training is for 😉.

Recently, I bought a pack of Pokemon cards for the fun of it, and found Rainbow Rare Gyarados (I’m not keen on Gyarados but it is really, really rare). I’ve been on a Pokemon card hunt ever since, trying to find some of my favourite Pokemon. I have found quite a few so far:

 

Unfortunately life has got in the way of gaming and I have started doing a lot less than I’d like to (I haven’t even played Fortnite yet!).

11. Autism is my main special interest

I feel the need to learn as much as I possibly can about autism. I have read dozens of books, dozens more blogs and go to every possible networking meeting, training course and event that I possibly can.

However, my main method of learning about autism is through introspection. Every decision I make, I spend time thinking about when I am alone to understand my reason behind it. My brain feels the need to find a reason for everything and doesn’t stop until it does. If someone asked me why I have done a certain thing (over text or email, not in person because I don’t have the best face to face communication skills), I can usually explain exactly why.

This is very useful for my jobs working with autistic children. We have the same or similar methods of thinking. Only when you know the root cause of a behaviour, can something effective be done about it. I get frustrated at work sometimes because a lot of people take behaviour at face value,  rather than taking time to understand the reason behind it.

My autism interest includes an interest in sensory integration. After going through burnout, I haven’t been able to learn as much about SI, but I am hoping I am able to tackle some of the higher level books soon. I have read lots of sensory integration books, but they are all quite similar and I want to learn about more advanced concepts.

12. I can’t focus on one task for a long period of time, unless it is something I am really interested in.

I do dribs and drabs over a long period of time to get to the finished product. I can’t really do things any other way.

13. I hate small talk

It’s just pointless and stupid.

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14. I am an emotional mess

Not just do I feel really strong emotions, but I also struggle to understand emotions. I didn’t realise growing up I was anxious most of the time, as I was always told that anxiety is a feeling in your stomach, but I feel it in my chest. My brain doesn’t automatically connect internal sensations with emotions, which makes life very confusing. This is to do with the eighth sensory system: interoception.

Also I’m really, really good at hiding my emotions? However, sometimes I get so overwhelmed by them that I don’t know how to respond, so I still look emotionless when I am not.

15. I have phases of liking different music genres that I can’t control

Right now all I can listen to is Grime but I think it’s silly. They rap about useless rubbish and most of the time they are rapping too fast for me to even understand what they are saying.

I also have days where I listen to the same song on repeat over and over again, today it has been this. Give it a few days and I’ll probably never listen to it again.

Music is a huge part of my life and it directly impacts on my emotions and behaviour. My favourite song is F**kin’ Perfect by P!nk. It lightens my mood no matter what.

Other phases include EDM (which is my all time favourite music genre) and Beyoncé, I have even had phases of listening to BG Media and Minecraft Parodies!

 

16. I love being autistic

Despite all of my weaknesses and weirdness, I also have unique strengths and I am happy with who I am. Autism isn’t a problem, it’s society and societal views of autism that are a problem.

I love autism, and you should too.

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Being an Invisible Young Autistic Part 1: The Dress Code

It can’t be that bad can it?’ some random man in the breakfast shop says, as I wait for my bacon and egg muffin in a good mood but with my morbid, effortless face on. Just do one will you Alan.

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When having a ‘normal’ face takes too much effort

You youngens on your phones. Back in my day we used to do fun things in the REAL WORLD. How times have changed’. My dear old Margaret. You sound like a lovely woman who has truly experienced life in the best possible way, but please shut up.

Social chit chat and small talk is pointless, irritating and hard work! I want to share what to do when you have had enough of humans, but when you still need to be out and about. This post will be about how to dress to suppress…

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If you look really closely, you’ll notice that there is no one there

The best dress style to develop to avoid interaction is the Roadman style.

What is a Roadman, I hear you ask?

comedian-michael-dapaah-in-character-as-big-shaq (1)‘A Roadman, also known… (Yes known) as a simpleton. These inferior beings wear filthy Nike and Adidas clothing accompanied with a hat and a man bag. A hat to hide their dandruff and man bag to hide their mum’s stolen wallet. These “people” have no future ambitions and commit local crimes for a living’

By K/O (Source: Urban Dictionary)

The discovery of the Roadman look was the best thing that has ever happened to me. I can walk along the street in their style and people avoid eye contact and pretend they can’t see me. Sometimes people even cross the road because they’re so keen to avoid me! You need to get it right though. You don’t want to take it so far that you look like you’re about to murder someone. You just need to look like someone who doesn’t look like they have any dangerous affiliations, but people won’t know for sure.

Here are my tips:

Trainers

Stick to Nike or Adidas. Find that group of kids who are wearing skin tight jeans and see what trainers they have on, trainers are pretty much the only thing that matter to these people so they know their stuff.  If you are sensitive to touch, the Adidas Ultra Boost Uncaged are perfect – sometimes I don’t even feel like I’m wearing shoes when I have these on.

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Adidas Ultra Boost Uncaged

Other personal favourites include Nike Utility Huaraches and Nike Prestos:

If you’re on a budget, go for Adidas Superstars or Nike Cortez:

Trackies/ Joggers

A decent pair of trackies/ joggers is essential.

These days, your trackies need to be skinny/ slim fit if you want to look the part. Nike and Adidas again pretty much run the market for a decent pair of trackies:

But if you want plain joggers, there are a variety of skinny and slim fit options to choose from too:

Coat

For the full Roadman look, you need a bubble coat. North Face and Nike do the best ones:

If you are on a budget, Zara also has a great range at a low price, but Zara clothes tend to have a short lifespan:

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The short term option

You don’t always need a bubble coat though, another ‘trendy’ one will do. My favourite is this:

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Don’t ask me why I’m sat on a black leather sofa. I’m dangerous, remember? So be quiet

It has the perfect hood to block out sensory input (sight and sound) and makes me look super unsociable. It has great pockets that can easily fit my infinity cube and keys and allow me to fiddle with them unnoticed.

In the Summer, try and find a thin coat, or a ‘fashionable’ hoodie. Luckily since I’m in Manchester and its usually colder than Theresa May’s heart here, I can spend most days with a coat on.

Putting your hands in your pockets is a bonus. You may be playing with a fiddle toy, but other people don’t have to know that. Who knows what you could be hiding?

Bag

Any backpack or typical bag will do (but don’t lower yourself to a man bag). But if you want to turn it up a notch, invest in a gym bag. People don’t really mess with Roadmen, but they definitely don’t mess with stocky Roadmen. Obviously the coat is hiding all of the muscle you pretend you have and you’re ready for action if anyone dares defy you.

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When your camera makes it look like you have no ears and a massive head rather than that you have headphones on…

Other important accessories

  • Headphones/ earphones

Headphones/ earphones are essential. Why would anyone try and talk to you if you can’t hear what they’re saying?

There is an art in this. You need to make sure people can see you have headphones on. I have a bulky pair which people can see sticking out of my hood. I also make sure part of the cable is dangling out under my jacket so that people know I definitely have headphones on.

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Big Headphones

Earphones are more incognito, so it isn’t always obvious you have them on and people may still try and talk to you – so I advise sticking to headphones if you can – which are also great if you are sensitive to sound because they have a noise reduction effect.

If you are nervous about others around you, just turn your volume down. You can hear what they’re saying, but still don’t have to talk.

  • Sunglasses

If it’s too hot to wear a coat, wear sunglasses. People won’t know where you’re looking, and this combined with your earphones/ headphones is the perfect combination to be left in peace. If you aren’t left in peace, at least you don’t need to give any dreaded eye contact:

Life is so much more fun when you don’t need to worry about looking people in the eye
A few other bits

You need to have a confident walk. This may seem counterproductive, but it pays dividends once you have mastered it. Try and look like you are walking with intent.

If you see someone you know, just get your phone out and pretend you’re doing something important to avoid their gaze.

Don’t forget about appropriation – Recently I went to a strategy meeting in my Roadman clothes, and a security guard escorted me to the room to make sure I wasn’t there to cause trouble! I tend to just swap my pants with a pair of jeans for important events so I look at least slightly socially acceptable.

If the Roadman style isn’t for you. There are other ways to be ignored. The next best option is the ‘I think I’m better than you’ look:

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Donald Trump doesn’t just have the ‘I think I’m better than you’ look, but he has the personality too. Luckily, we can all see through it and know he’s a numpty

I hope you have found this useful. I get left alone most of the time now. I still get funny looks when I remember something funny and give out a random burst of laughter, or sing a line of a song/ bust a dance move when I forget other people are around, but you can’t have it all.

Now go and enjoy some bloody peace and quiet!

Transitioning from being a lost ‘neurotypical’ to a happy autistic

This time two years ago when I was 18, the way everyone saw it, life was going great for me. I had a job I loved, I aced my first set of university exams, I had lots of friends and I had strong career prospects.

Now I am 20 years old, and sat in McDonalds at 2am, with my shoes off, fidgeting with an infinity cube, staring at a wall with my headphones in, like I have for the past 2 hours. This has been a common occurrence over the last few months. Recently, I have been feeling pretty lost, avoiding social interaction and barely eating and sleeping.

This happened as a result of being autistic. Let me go back to the start and explain how I got to this stage…1431173202-35195600

I have the typical undiagnosed/ late diagnosed autistic story that you are probably bored of reading by now. I always knew I was different, I was bullied at school, I masked my true self and all that jibber jabber. I’ll go into detail about my traits etc. in future blog posts.

There are a few things I want to mention though:

  • Everyday when I got home from school I used to read books and play games to escape from a world I never truly understand. Why try socialising when you can save the Universe with your dinosaur astronaut friends?
  • POKEMON WAS MY LIFE – I used to play on the driveway with my neighbour who was 4 years younger than me, so that I had someone to share my special interest with. Did you know the creator of Pokémon is autistic too?
  • I had a ‘normal’ home life. I live with my mum and my brother. I didn’t just mask at school, but I masked at home too. My priority when I was younger was to fit in. But as I got older, I stopped doing what my mum wanted me to do as much and started thinking about myself. Now I don’t really speak to my mum because I don’t conform to what she wants anymore.
  • I did well at school. Studying was a lot easier than socialising, so I finished school with 8 A*s and 3 As, and finished college with grades A*AA too.8248-Mega-Tyranitar

Before starting university, I got a part time job which completely changed my life. It was a job as a support worker, offering social opportunities to children with special needs. From the first shift, I felt like I fit in. I understood most of the children and loved every minute I spent there. I started doing more to learn about the children, reading about autism in particular, and I was surprised by how much I related to what I read. Like I said, I always realised I was different, but this job made me realise I am autistic. 

Sarah, my boss, is who I have to thank for this realisation. it was her who gave me the job – a nerdy loser who wanted to be a web developer or an accountant, I’m still not sure why. It was Sarah who noticed how at home I felt when I was with the children, despite keeping to myself when I was with the staff. It was Sarah who said I was doing great and made me feel appreciated (as well as the kids who were asking me to work with them of course!). This was the first time I received positive feedback for being myself. I hid some things, like my anxiety and my difficulty understanding emotions, but I enjoyed work and I felt comfortable being there. I might driver her mad now when I get the kids overexcited, sing too loudly or go on crazy adventures, but she’s the one who made me feel comfortable doing that. She was also the first person in my personal life I told I was autistic. Us autistic people need more Sarah’s in the world.IMG_2592

After starting this job I felt like the piece of my life that was missing had been found. As a result, my first instinct was to do more to support autistic people, and I started working and volunteering for 14 different organisations. I changed degree from Computer Science to Psychology and got involved with everything I possibly could. As I was doing this I noticed more and more of the huge struggles and challenges that these autistic children and young people were facing and were going to face in the future. People say autistic people do not have empathy. But that is not true, we have too much empathy. I felt like I wasn’t doing enough to help these children and as a result set up the charity A Spectrum of Possibilities in June 2017. But I was so overwhelmed by how much need there is that my empathy turned from a driving force into a burden.asopFinal2x

I got so overwhelmed and upset by it that I got to the point where I could no longer function. Everything was too much: the empathy, all of my commitments and the energy used to mask my autism and fit in. As a result I went through a process known as autistic burnout (you can read a fantastic blog explaining what burnout is here). I failed my second year of university exams, I stopped seeing friends and going out, I started overthinking about every little thing and I started spending more and more time on my own: sitting and thinking and going on random walks. My burnout started in December 2017, and I have only recently started my road to recovery, and to functionality in February 2018.

My life has changed rapidly over these 3 months.

During this time I spoke to autistic people who told me about burnout and how to move forward. I was mainly told I need time to recover and need a break from everything.

I went to counselling sessions to get support, but all of their strategies either don’t work for autistic people like me or simply didn’t help.

It felt like an endless downwards spiral. I needed a break, but I couldn’t have a break because of the expectations people had of me, and the amount of things I had planned or needed to do.18l05sl1romt4jpg

This made me realise that I need to change my life.

need to get rid of the mask and stop trying to conform, as this takes up too much energy.

need to tackle any problems at their core, rather than trying to cope and deal with the aftermath.

Autistic people have written a lot about this. Eventually, you get to the point where you run out of fuel and can no longer live the fake neurotypical life. This leads to mental health problems, and even suicide in autistic people who don’t realise they need to change and start being themselves.

So it is my time to change.

Now I ask everyone to be black and white, open and honest with me, like I am with them, due to my huge anxiety over uncertainty. I also bought a productivity planner and scheduled all of the tasks I had to do this year, and put them into manageable chunks I can do each day so that I stopped feeling as overwhelmed. Plus, I have stopped speaking to ‘friends’ who just used me and didn’t reciprocate and I started tackling my other anxieties. I have also made a pledge to share that I am autistic to everyone, to stop masking as much and to let everyone know what I need.Titanic-meme---Lets-be-honest

I am still not really sleeping, I still have a rubbish appetite, I still avoid lots of interaction and I still faze out of the world and go into deep thought. I also still don’t know if I will be able to complete my Psychology degree, but I am improving and I am ready to start being myself. Most importantly of all, I am ready to live life the way I am supposed to. It isn’t going to be easy, but I now have some amazing people in my life who I am very grateful for, who have helped me get to this point, and who I think will help me go further. They aren’t there for me because I pretend to be someone I’m not, but they are there for the real me. If you mask for your whole life, you will never get the opportunity to meet amazing people like this. I am grateful for the opportunity to realise who I really am and what I need to do to be happy. Thank you!201504_1141_baeei_sm (2)

The purpose of A Spectrum of Possibilities is to empower autistic children and young people, celebrate their differences and make sure they live happy, prosperous lives, by using the experiences of autistic adults to stop these children from going through what we have gone through and to help them to understand themselves and what they need.

But we aren’t just here for the children. Parents play an essential role in the future of autistic children. We are here to help parents understand their children and to help them with their struggles, but also to learn how to utilise their children’s unique strengths. I know autism coming into your life is a huge shock, but ASOP is here to support you in your autism journey, which is a long and challenging one, but which pays dividends in the long run if you do it right. I am going to write future blog posts that will hopefully help you understand and help your children more.

If you feel lost, hopeless, or just need a bit of guidance or support, please get in touch and I will do anything I can for you. I am fighting for a future where all autistic children can grow up happy, and I would love to show you how to do the same for your children.

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