Where’s RoOkin?

I am not in a good place at the moment. One of the problems with having Asperger syndrome is understanding how others feel and what other people mean. It can be very confusing and frustrating at times. It is hard for me to explain to people who don’t have this condition to understand how difficult it can be.

To help you understand what it is like to have Asperger’s and how confusing it can be let me give you a few examples.

Let’s say there is a comic book character called Wally The Waiter. This is Wally…

wally.jpg

Wally is a clumsy waiter who is always falling over things and getting in trouble. He doesn’t mean to be so clumsy but he can’t help it. Some people are just clumsy. He may be clumsy but he always works hard. He is always busy making sure everyone gets their food and he always makes sure that everyone is happy. He is working hard in the picture below. Can you find him? Where’s Wally?

whereswally.jpg

Now if you are American or from another part of the world you might find this task far easier and less confusing than the British people reading this. I am hoping that the task of finding Wally might confuse you. Not because you are looking for him but because to my English eyes there are two Wally’s. There is my made up comic book character ‘Wally the Waiter’ and there is this guy…

wallyface

So you might be forgiven for being confused. American’s on the other hand might not be as be confused. When I asked “Where’s Wally?” They are looking for ‘Wally The Waiter’, they are not looking for ‘Waldo’ as that’s what Wally is called in America.

This type of confusion is what a lot of people with Asperger’s have to deal with. Something you might find simple to understand, like the Americans looking for Wally, might be really hard for someone with Asperger’s to understand. Just like the British people looking for Wally.

Social interaction can be difficult for people who have Asperger syndrome and because it is not a condition that has any visible signs it can be hard to spot. Like you can’t tell who is a vegetarian just by looking at them. It’s only really when it comes to having a meal that being a vegetarian might have problems. For example…

Imagine you’re a vegetarian. You are far away from home and you’re sat on your own in the only restaurant in town and you are starving. No matter how hard you look at the menu nothing on there seems to be clear if it contains meat or not. There is only one waiter in this restaurant (let’s call him Wally) and he looks like a friendly sort of chap. He comes up to you and asks if you are ready to order. You ask him if anything on the menu is suitable for vegetarians. He looks a bit annoyed and then goes away and brings back another menu. However the menu he has brought back just appears to be the same menu. You find this confusing. Does this mean that he has understood that you are a vegetarian and all the food on the menu is ok to eat? Before you have time to ask him the waiter has gone. So you just sit there wondering what to do. The waiter returns and asks if you are ready to order. “Is this same menu that I had before? So everything on here is Vegetarian?” you ask him. This makes the waiter angry. Instead of answering your question he just gives you a long stare and tells you he will return when you are ready to order. So you just sit there feeling hungry and confused as the only person who can answer your question of what you can order is the waiter. You call the waiter over and ask for something without meat. This makes the waiter very angry and he storms off. Is he going to return with food? Meat free food? Is he going to return at all? You sit there feeling hungry, upset and confused waiting for the waiter to return. You then see the waiter happily chatting to other customers. Maybe the waiter isn’t angry after all and your meal on it’s way soon. You wait, and wait. You try and catch the waiters eye and he finally comes over. You ask him how long your meal is going to be? He starts shouting at you and then kicks you out of the restaurant. You have no idea what has just happened. You didn’t mean to upset the waiter, you were just hungry and waiting something to eat.

So being someone with Asperger’s is like being that vegetarian and dealing with someone with Asperger’s is like being the waiter. They both saw things differently. The vegetarian felt isolated and alone and just needed the menu to be explained to them. The waiter on the other hand just thought that the vegetarian was deliberately trying to make his life difficult, but he just didn’t really understand what a vegetarian was. If the waiter had explained what each meal on the menu was then there wouldn’t have been a situation. The vegetarian would have had their meal and the waiter wouldn’t have been so angry.

Having this condition isn’t something that can be fixed. It is just how the brain is wired. like being left handed or right handed. I am left handed, and no matter how hard I try to write with my right hand it just doesn’t look or feel correct to me. I will never be able to use my right hand in the same way I can use my left.

There are lots of situations in life which can be difficult if you have Asperger syndrome or need to deal with someone with Asperger’s. It can be a bit of a mine field. You think everything is going fine but then one day something just blows up in your face. Social media can be like a mine field. It is full of people who have their own ideas, agendas, and their own way of expressing themselves. Lots of waiters, vegetarians, Wally’s, Waldo’s and you don’t know who is whom. Some people you might feel close to because they say things that you can relate to, they on the other hand might hate you. Some people you might dislike but they think you are awesome. Some people clash, some people connect. It can be very confusing for the average person to navigate the online world of social groups and cliques, so imagine what it is like for someone who has Asperger’s. There are people who find swearing at others acceptable and those who take insults to heart. I find it hard to understand the difference between friends having ‘friendly banter’ and two strangers having an argument. 

I often struggle to understand how my words might be interpreted by others, and as a result can find that I have caused offence when this was the furthest thing from what was intended. I hate to think that I have ever upset anyone. It is never my intention to do so. I don’t like to say bad things about others, I know how horrible it feels. I always feel the need to fix things and make things better but then even that can be interpreted as being meddling and intrusive at times. I have always been a bit of a sensitive soul, and some things said online I will never forget. I have been on the receiving end of abuse there was that person who wanted to set me on fire and dance around my burning remains. I may have problem understanding others at times but I’m sure the person who wrote that didn’t want to be my friend. Either that or they are/were a friend who was ‘just having a laugh’ and this was their idea of ‘friendly banter’. I just don’t know.

Because of this struggle I have with understanding others I have decided to remove myself from some social media sites. Why remove yourself you might say? Why not just leave your account and just not use the sites? I did try that, but I found it hard to let go. Hard to step away. I would just keep going back just to see how people are and what they are doing. I just really need some time off line to sort my head out. Saying that I haven’t gone completely, I still have a online presence, so who knows what will happen. I may return, I may not, I don’t know. But if you look, I’m sure you will find me.

Why do you follow me?

Since being diagnosed with Asperger Syndrome I have had a hard time trying to be ‘normal’. I know I need to accept that I will always be different but when you receive a 4 page report on your diagnoses, it’s a bit like someone pointing out that you constantly pick your nose. I don’t know about you but when someone points out that you do something or act in a certain way, you do your best not to to do it because you have suddenly been made aware of these habits and mannerisms. One part of my diagnoses reads…

“He lacked eye-contact and his spoke with a number of unusual inflections. He had a tendency to include too much detail in his explanations and even when answering questions from me”

Ever since the report, I’ve tried my hardest to make eye contact with people, and to summarise my responses, but it just doesn’t come naturally to me. I know this is because of my condition and I can’t change who I am. But most of the time I just don’t want to come across as weird. It makes me wonder how I come across to people online. I don’t need to make eye contact with people on the internet, and on twitter you can only tweet 140 characters so you need to summerise too. Do I appear normal on twitter?
Twitter can be a strange place, lots of people all talking at once. So many opinions, so many voices. I have always been curious as to why people follow me. I don’t really tweet too often, I am not that funny and I don’t really have anything really interesting to say. I am definitely not part of ‘The Twitter Elite’ as some people call them. My profile says “likes random ramblings” and that’s what I do. I tend to tweet about whatever is on my mind at that moment, good or bad. I would say I am more open on twitter than I am on facebook or even in real life. This can be a bit of a curse at times as I tend to wear my heart on my sleeve. My therapist said that most people do their best to hide the darker sides of their personalities or the things that make them vulnerable. I don’t tend to do that because then how will people be able to understand me if they don’t have all information needed.
 Yesterday I posted a question:

“Why do you follow me on Twitter?”

100 people answered my question. It was anonymous so people could be honest. Most people who responded mentioned something about my surveys which I can understand. The survey which started off as my own form of therapy for understanding others has become a major part of my life online, which unfortunately has got a bit in the way of my main twitter account, but I doing my best to balance time between my account and @5urvey. I received a lot of positive feedback. People saying things like…

“I find you interesting, creative, and kind. I like your honesty. You seem open and kind of vulnerable. You rarely (if ever) interact with me but that’s ok. You strike me as needing a cuddle and a pep-talk. You seem to be a good person. Sweet, and loving.”

“Initially because I heard you on the Tell ’em Steve-Dave podcast, but I stay because your funny, post great Instagram pictures and have some similar interests too me.”

“Because you appear to be a nice bloke. You are funny. You certainly don’t deserve all the criticism you get from the twatters. Stay resilient my friend.”

It is always nice to read nice things but I also want to see what else people would write. This would be the chance to see what a lot of people really think of me.

“I follow you because I enjoy your interesting tweets from time to time. However this recent self justifiction bollocks is just needy.”

“At first because you were sweet but the egotism has got ridiculously out if control. See ya.”

I think a lot of these points are valid. I guess I do come across as needy at times, especially at the moment when I am trying to come to terms with my condtion. I don’t think I am being egotisic but I am not the person who wrote that so they must have their reasons too. I think hard part of Asperger’s is trying to understand others.

This response was the one I found the most interesting…

“I’ve noticed that you can be sensitive to certain things, I think it seems to upset you a lot when people unfollow so there’s a little bit of unintended pressure to continue following. Sorry, but you did ask.”

I am indeed a senstive person and so sometimes get upset when people unfollow me on twitter, but it really depends on who that person is. I know that one of the problems I have is to make and maintain friendships, and a lot of people on twitter I consider my friends. I am not too bothered by the number of followers I have. I used to get all excited when I gained new followers and sad when I lost them. I don’t know if it’s down to being on twitter for a while so it has lost a bit of it’s sparkle or since I past my personal goal of a thousand followers, or even down to my condition but I don’t get upset if I lose the odd follower. I only get upset if someone I follow unfollows me, esecially if it is someone I have met, know, and consider a friend. On Twitter I tend to follow people who I can relate too, but I mainly follow people who I can talk and have a conversation with. When someone sends me a tweet and I don’t recognise their picture or name, I normally look to see if follow them and have a look at the photos they have posted. They say pictures speak louder than words and I tend to agree with that. If they haven’t posted any photos then I don’t really have clear understanding of who they are. I am not really interested in food (due to my eating disorder) so pictures of food don’t interest me. The same goes with football or other sporting events as they don’t interest me either. If I see that a person has posted a photo of Star Wars stuff, or their favourite music, comics, sci-fi movies etc then tend to take an interest and follow that person. However I don’t tend to look too much in to what they have tweeted about. I assume we will get on just because we both like ‘geeky’ things. This was also picked up when I was diagnosed too…

“he appeared to choose friends based on the things they owned rather than personal qualities.”

This is not a reference to someones material worth, but if they liked the things that I liked. I have a really hard time relating to people who don’t like the things I like. This part of my condition too. If I don’t follow you on twitter it’s probably because you don’t tick some of these boxes not because I don’t think you are a nice person. I am also sorry if I come across as cold or aloof but it is all part of my condition…

“he can appear to lack empathy and that he is not very good at comforting others or understanding their point of view.”

I try and do my best not upset people but I know that it is impossible to keep everyone happy. It is hard for me to understand others and understand myself so I will always be searching for answers. It is in my nature. I always thought it was due to the scientist in me but now I know it is due to my Asperger’s too. I like order and stucture.

So why do you follow me? Well it’s due all of these things. It is because I am…
‘geeky’, ‘random’, ‘interesting’, ‘cute’, ‘brilliant’, ‘genuine’, ‘nice’, ‘kind’, ‘funny’, ‘lovely’ etc. but also because…

“he is the Morgan freeman of surveys”

and I like that.

36 things about being Thirty Six

I turned 36 last month. These are 36 things I have noticed about being 36.

  1. Nothing really changes.
  2. I wonder how people much younger than me have managed to acheive so much.
  3. I’ve been on twitter for 3 years.
  4. Losing weight isn’t as easy as it once was.
  5. BBC Radio One is not for me.
  6. It’s harder to keep a willing suspension of disbelief when watching films and TV.
  7. Little things annoy me.
  8. Years don’t feel that long.
  9. My handwriting is still awful.
  10. Teenagers think you are old.
  11. Many people my age have children.
  12. Most of my clothes are over 10 years old, some are even 20.
  13. I have written an online blog in some form or other for 13 years.
  14. Music doesn’t excite me like it once did.
  15. I’m sure some of the girls I went to school with are now grandparents.
  16. I still feel like I am 16.
  17. Having to accept that I’m never going to be a spy/astronaut/ninja/pirate/robot.
  18. Realising that 18 is half my age.
  19. A lot of people expect you to act your age.
  20. I am still useless at spelling & maths.
  21. Bands I consider to be fairly new bands have all been going for more than 5 years.
  22. Things don’t impress me much.
  23. If I was an american I would old enough to be their president.
  24. My diet hasn’t changed.
  25. I am older than Tom Hardy, Zachary Quinto, & Michael Fassbender.
  26. I still look like I am 26.
  27. My short term memory is awful.
  28. I might be immortal.
  29. I am always tired.
  30. When I was 30 I tried to make a mental effort to grow up.
  31. When I was 31 I realised that I was never really going to grow up.
  32. I’m going grey.
  33. Some of the guys I went to school with have gone bald.
  34. I’m old enough to be Justin Bieber’s & Miley Cyrus’s dad.
  35. Being young at heart is better than being young.
  36. Things are always changing.

Are You Easily Distracted? I am…

So my last post was back in January, which has surprised me really as it didn’t seem that long ago. In that post I commented on how I hadn’t posted anything for two months, 68 days to be precise (it was the title of the post after all). Well I appear to have left things for more than 68 days this time. Doesn’t time fly? I have tried to update since then as there has been lots of things that I wanted to blog about but (as you can probably tell from this) I just don’t know how start and then when I have started I have a hard time staying motivated and an even harder time staying focused on the subject that I wanted to write about. Once I have lost the spark I just give up on it. I have many post sat in drafts that I have given up on, some are only a few sentences long, others are paragraphs long, but they all are attempts to keep this blog alive & kicking.

To give you an example, here are the start of two entries that I started and never finished;

  • Fear of the Future – May 20, 2011

    I fear change. I hadn’t realised how much until the other day…

This entry was all about how I don’t like change, my fear of growing up and the a realisation that if I had a child today that by the time it turned 15 I would be 50! eek!

  • My Generation – May 9, 2011

    I came to realise the other day that my generation are the last to know what the world was like before the internet…

In this entry I was feeling nostalgic and I wrote about how the internet has changed everything we know. I talked about how everything is instant. We no longer have to wait for our holiday photos to come back from ‘Snappy Snaps’ before we discover that our thumb was in frame, etc. Most of the entry was inspired after reading this old blog entry by the late Douglas Adams back in 1999. http://www.douglasadams.com/dna/19990901-00-a.html

So there you go, just two entries out of many that I failed to finish. One that I wish I had posted but never got round to finished was a post all about Tw1tterband. What’s Tw1tterband you say? Well…

Back in Febuary I was involved in a band that was just made up from people on twitter (hence then name) hardly even of us had met each other but we recorded a cover of Rod Stewart’s “Maggy May” the finished song was launched on Sunday 6th February on BBC Radio 5 Live and raised £2285 for charity. The band went on to cover The Smiths “Please Please Please Let Me Get What I Want” which got the attention of Johnny Marr of The Smiths, which then got the attention of the national press.

You can read all about that on the band’s blog here… http://tw1tterband.blogspot.com/

So as you can see I have had lots on my mind and lots to write about, i’m rubbish at writing about it that’s all. I haven’t even written anything about seeing Dave Gorman! *sigh*

I think this t-shirt sums me up best…

🙂

What makes you, you?

I have wanted black frame glasses ever since I was about 11 years old when I had to start wearing glasses but for years I just wore what my parents bought for me. Black framed specs seemed impossible to find. I can remember seeing Elvis Costello on TV and wondering where he got his from. I always thought that glasses were like guitars. When you are a young guitarist all you seem to find and afford are Stratocasters & Les Paul Copies when what you are really after is a Fender Jaguar. So buying these glasses was a giant leap for me. Glasses can define someone more than the clothes they wear.  Once you get a pair of black framed glasses it is hard to turn back.  I found myself buying the same frames (boots – curlew) for years. Then came the bad news… Boots Opticians no longer made these frames. Boots however were kind enough to put me in touch with the chinese company who made them. After a few emails back and forth it turns out they have stopped making them (woe). So I went on the hunt for new frames, and since then I have built up a small collection. I had also not realised how when you do wear a pair of black framed glasses that you fall into a generic category. People recognise you because of your glasses or mistake you for someone else who also wears glasses, even if those glasses look nothing like your own. A good example of this was in 2005 when I was a Reading festival. I was minding my own business watching a band (as you do) when I noticed that I was being looked at by a group of people who then started following me. One of them finally came up to me and said. “Excuse me, are you Rivers? I’m a big fan”. I was a bit confused. The only person I could think she was talking about was Rivers Cuomo from Weezer. Who apart from having dark hair and glasses I think looks nothing like me.

Me at Reading Festival 2005

Rivers Cuomo from Weezer

She looked a bit embarrassed as I said “No” and went back to her friends to inform them all that I was not he. This however was not the first or the last time that people think I look like someone else just because of the glasses alone. I’ve been told I look like Mr E from the eels, Rolf Harris, Rick Moranis, Graham Coxon, Woody Allen. You name it almost anyone with dark hair and glasses. All of which look nothing a like. I wonder if anyone has told Woody Allen that they loved him in Ghostbusters? When you wear glasses you also have problems when it comes to fancy dress. You have 3 options; 

1. Lose the glasses. You then dress as anyone. In my case I was the Joker.  The downside of this is that you can’t see anything at the party.

2. Wear your glasses. This may look odd if the person you dress up is not known for wearing glasses. Freddy Krueger being one of them.

3. Find a character that has glasses and make it part of your costume. Like Clark Kent changing into Superman.

Now that last picture of me, The one of me as Clark Kent/Superman I have used as my avatar across the internet for almost everything. I think it kinda sums up a lot of who I am. I like comics. I like fancy dress. I like geekyness. It shows of a bit of personality and I like that. I sometimes think about getting contacts. Break away from this generic look. But then I think of this…

2 years ago my friends threw me a surprise birthday party where everyone dressed as me. What I thought was a generic look is unique to my friends. I am my glasses and my beard. It makes me who I am. I asked people on twitter to post a photo of themselves looking like me and here are my favourites

@Louise_Knight

@jodiechat

and saving the best till last.

@tipyourhat

Everyone has there own look and mine is having a beard and glasses.

It makes me, me! …and I am happy with that.

Me 2010