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…

 

 

 

 

 

 

 

 

 

 

 

 

 

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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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