Inside Out

When you tap a Sim (or any other virtual game), you can see there are lists of things to do and there are also things they can do if they have no ‘quests’. You watch the body on the screen move around and do as you tell it to. It’s a body that ultimately has it’s life decided for it by a brain that is detached from this virtual being. That is what it’s like inside of my head.

Even before I was diagnosed with autism, I knew that my outlook on life was different. Not many people view the inside of their mind as a virtual game. But that’s how I conduct everyday life.

When that person wakes up, what is expected of them? Go to the toilet, brush their teeth, have a shower, get dressed, have breakfast, etc… Are there any specific events on that day that changes my routine? If so, what time scale do I have to make sure everything is fit in and ensure I am still comfortable? These are questions I think of at least a hundred times a day. I have multiple lists inside of my head and on a particular day, I’ll tap into one that makes the most sense for the following events. Now this is my list.

All my life, I have been able to guide my body without my mind ever feeling truly connected to it. It feels separate to me but it isn’t an out of body experience. I know well that it’s still there and it’s not the same as looking down at myself while some version of me is floating above. It feels like my brain is active but my body isn’t, and so it’s a separate part of me. Most of the time I have no full comprehension of how my body is, just that it’s like a puppet that I pull along with me.

So finding a list for that day is all well and truly great, but then it’s about forming, finding, and double-checking my list.

If you had a room with post-it notes plastered all over every surface and each one had a sentence on it, would you be able straight away to find that one specific note you’re looking for? That’s how I imagine the inside of my brain to be. I have a general idea or I know I know something and I’m desperately trying to find this one note all the time, every day, and there’s just too many.

People joke about me being socially inept or that I’m stupid, as I can’t seem to answer questions fast when ‘put on the spot’. Yet, if you had all of those notes in no particular order and suddenly somebody said ‘what is the answer to…’ then you would also panic when you had to find that one note out of hundreds of thousands. It’s like somebody came through into the room and turned on a large fan that blew the notes everywhere. So in the end I’m left scrambling to pick them up and make sense of them.

Moreover, I could joke that I’m never alone because there’s always at least three voices in my head telling me different things at once. This is why people with autism can be misdiagnosed with bipolar disorder and schizophrenia. But this is different. It’s one voice and it’s my own, but it’s like it can’t process one thought at a time. There has to be multiple at the same time and I have to decide which one is most relevant or which one I want to pay attention to.

People ask me what I’m thinking about or what it’s like to have the brain of someone with Asperger’s. All I could say is that it’s confusing and it’s a mess. People ask me why I’m so tired all the time. Wouldn’t you be if your brain never stops? Even when I’m sleeping, I always have a dream and I always remember. As soon as I wake up, I’ve already formulated a list and I’m already going through it and any other relevant list to my life- what uni work do I have to do? Have I agreed to see anyone? What clothes did I wear this past week so I don’t wear the same thing? Where are my keys? Those are the questions that go across my mind, even when I’ve asked them every day. It never hurts to be thorough.

There are rockets always flying above my head in flashes of light and that’s how my thoughts feel. They’re quick, loud, and disorientating, but all you’ll ever see is me sitting there, face straight.

These are things I want people to bear in mind when they ever think how slow, how confused, how tired I seem. I can become the butt of a joke because of those things. Or people are perplexed by the way I am or the way I seem to think. But it’s hard to explain something that seems absurd to me too and that’s all I can think of for now. This post was to make a little sense out of something that makes no sense at all.

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Thirteen Years

I offered to do a speech the other day at Russell’s Hall Hospital for medical professionals and students. The whole premise was that my mother and I stood there and talked about our lives as carers. A few topics were covered, including general statistics, my brothers, our family, mental health, hospital and local services, and our finances.

Now that I look back on it, I realised, perhaps, that I should write about it also. People tell me it’s enlightening and that I “did so well; you should be proud”- all the usual praise that people feel the need to give you, but that is not why I’m doing this. It’s for my own satisfaction and for the understanding of others. In a way, it’s a very cheap, public therapy session.

So, we started with the usual national statistics of carers across the UK. However, in this case, national statistics aren’t of interest to anybody but I’m going to list them anyway for your own education.

There are over seven million carers in the UK alone, which would equate to one in ten. Three in five people will be carers at some point in their lives in any capacity, even if they do not realise they are. 42% are men and 55% are female. In 2010, the BBC found there was an average of 700,000 young carers in the UK. Around 68% of them had been bullied at some point in their lives. Only half of them feel that another person or adult understands their home life. Moreover, an average of 48 days of school will be missed a year to care for someone at home. This comes from a lack of services that fund young carers, especially part the age of eighteen, shown in 79% of carers who will not leave home due to a lack of support for the person they care for.

In these points alone, I can already understand and relate to all of these points. There were times when I felt I could have been bullied but luckily, I’m not easy to bully. I tend to argue back or just outright ignore what someone is saying to me. So, I’d say bullying was not something I encountered frequently but they tried. As for days missed at school, well, it was never that great once I got to sixth form but that was due to my mental health rather than my caring role. But I’m one of the lucky ones. I can leave home and live my own life. To a certain extent.

In life, there is generally one pivotal moment that changed your life. For some people my age, I suppose they still have a lifetime to have that moment. I had mine when I was six.

That day I was sitting in school and I was told my mother went into labour. That moment changed my life in dramatic proportions that only those who have been in that situation can understand. From the moment they were born to the end of their/my life, my whole existence will always revolve around them.

It was like having children when I never had one nor agreed to care for one.

That one pivotal moment comes with two names- Harry and Thomas. When people say the whole world doesn’t revolve around one person, that’s how it feels when it comes to my younger brothers. My world will always revolve around them, as long as they’re on this earth.

If my mother hasn’t already told you the story ten times, my brothers were born at 25 weeks old and as she puts it, only one week after the abortion limit. They could fit each of them in the palm of your hand, they were so small. But I don’t remember any of this. Perhaps it was my age and my inability to process the situation, or I just didn’t care, but almost a year’s worth of hospital visits didn’t stick in my memory.

I remember my grandparents taking me to see them, making me scrub my hands before going to see my brothers. I remember a girl at school whose brother had been born at the same time. He went home straight away and he was fine. I had to stand and look at my brothers in a plastic box. If I wanted to touch them- I couldn’t hold them- I had to put my hand through the holes in the incubator with the severe supervision of my parents.

Whenever I went to the hospital, I hardly spent time with my brothers. There was no connection there. I was left to talk to the nurses, colour books quietly in the hallway, or read the next instalment of the Narnia Chronicles. No playing, no talking, no holding my own two brothers.

Once they were home, I was allowed to hold them but they had oxygen tanks, which meant I could only hold them a certain way and certainly no carrying. There were wires everywhere and tanks nearly the same size as me. Imagine hauling them with you wherever we went. We didn’t go anywhere. People took their kids and babies to the park, or family days out, or baby groups. We kept my brothers in moulded blue chairs to hold them still, while they stared at you over their oxygen wires, their tanks always behind them.

But somehow that never daunted me. I was an only child for years so I guess I thought this was a new normality of life. I hadn’t known any different. Then one day, the reality of what other people thought became obvious. You know how primary school goes. I had an argument with someone about something petty, as kids do, and as I turned to leave, he said something about my brothers being retarded. Safe to say, he was on the floor in the next few seconds.

But you can’t go through life reacting that way to the stares, and the comments, and the evident disgust.

You can’t be embarrassed when your brother smacks his head off the floor in the supermarket when he doesn’t understand what’s going on. Or when they can’t sit still at a meal in a restaurant. You’re not allowed to let people see that you’re tired and embarrassed. Of course, you become resilient to other people’s opinions and that you couldn’t care less. But that takes a few years.

While everyone else is going out with their brothers and sisters, playing games, going on holidays, and whatever else people seem to do, there is no bonding in the same way. I washed my brothers, clothed them, changed their nappies, fed them, put them to bed, and gave them medication. That was how we bonded.

There was no talking or understanding. I sat with them while they stared at the television, since they couldn’t move or communicate. Imagine growing up hearing people spend time with their families.

“My brother is coming back and we’re going to the cinema.”

“My brother is going to prom tonight.”

“I just went camping with my brother.”

Well, I just listened to the Moana soundtrack at home with mine for the umpteenth time. We will never have a normal sibling relationship and thirteen years later, I am beginning to grieve that loss. They most likely will not marry nor have children; I will never be an aunt. I have brothers but I won’t have that relationship- not a normal one.

And then we come back to the mental health aspect. My mother attributes it to my brother’s being born but there is so much more than that. I’m not the only person in our house who has had issues with their mental health. In fact, both of my parents have struggled, especially my dad. Men always struggle more with their mental health and he was the last to be asked for support. Between school, work, caring, my brothers, and my parent’s own issues, I would say it wasn’t as clear-cut as my brother’s being born.

It’s not as simple as our family being ‘strong’, or ‘inspirational’, or ‘amazing’. You get that so often but how can you do anything else other than get on with your life? What were we meant to do? Leave them? Neglect them? Give them to care? Those were not options and it is how it is. It’s not a matter of being strong.

I’ve mentioned my mental health before and I’m not for skirting around the issue. People should discuss it more. Perhaps then, it may become less taboo in everyday conversation. We all have issues. Get over it.

But again, I can always pinpoint the time that I got f***ed over. One night, on the same week that we had returned from our first holiday in America, in the chocolate aisle of Sainsbury’s. I tried to tell my mom and I ended up crying for two hours before going back downstairs to tell her. I spent the next week off.

It took all of my courage to tell my friends and I got nothing in return. How can you be depressed when you just came back from Disney World? So I only ended up discussing it with two of my friends. Years later, I get people telling me about their own mental health now they’re in university and I tend to ignore them. They want me to sympathise and for me to give them advice, but where were they when I needed them? Nowhere. Amazing. And the best one of all- “Why didn’t you talk to me?” Because my own friends made it quite clear they weren’t interested. Nobody wants to invite the downer to the party.

My teachers labelled me as lazy and ‘just not clever enough for A-Level’. It’s okay, they tell me, it happens to a lot of people. Even when I was definitely aware of my depression and anxiety, it was always the same. From a student with impeccable attendance and grades to someone who was hardly ever there and barely scraping a pass, nobody stopped to think there was something wrong. Even when they were told.

Then above all of that, SURPRISE, I found out I had Asperger’s. I got my diagnosis, offered the few support services they had, and told I would always have reactive depression and ongoing anxiety issues. But good luck at university and with life in general.

But I guess my brothers still have something to do with it. Every holiday is a ‘holiday of a lifetime’. Everything they do is ‘the chance of a lifetime’ because we will always be aware that they will not live an expected life span. Every time they are given a great opportunity, I watch their reactions and there is always that thought that they will die.

I don’t know if you’ve ever experienced that feeling. I don’t know if you’ve ever seen your brothers sleeping and checked if their chest is moving, or gone to see if they’re still breathing when they wake up later than usual. I’ve been lying next to my brothers and them not respond. Have you experienced the feeling that your younger brother is lying beside you and you don’t know if they’re alive? Because I have.

I am their favourite person, their best friend, their protector, their guide, and ultimately, I will be the one to bury them.

When a sibling is born, have you ever wondered when they will die? Have you ever had to pick a career with your siblings in mind, knowing you’ll have to provide for them? To know that if they are still alive when your parents pass on, that you will be that one person to care for them. You have the responsibility and no matter how much I am told I don’t, whose else is it? How could I leave them to fend for themselves if my parents were no longer here? My life isn’t just for me and it never has been since the day they were born. I will always make most of my life choices with them in mind.

And somewhere in the audience at Russell’s Hall, I heard someone start crying. It might be surprising or upsetting to some, but this is what I find so bizarre. My brothers were born to my parents and as my siblings, yet other people seem more traumatised by their disability than we are. We have to comfort friends and family who are more upset by this fact. But we’re the ones who live with them and who care for them. How this works is beyond me.

Where I am going with this post, I don’t know. I guess if you’ve never been in this position, then you should count yourself lucky. If you have, then know there is someone who, at least partially, understands. My life has been good and my parents have made sure I am somewhat cared for. So always be thankful for what you have because you never know when it could end.

I will never know how long my brothers will be alive. Tomorrow, next week, or in ten years time. So I hold their hand, I cuddle them before they go to bed, and I buy them the new Disney toy they want because it may not be the relationship we wanted, but at least we have one. I am a carer and I always will be. At least they are alive and here. That’s all you could ask for.

Hollow Persistence

One thing that is certain about my Asperger’s Syndrome is that I will always have anxiety and reactive depression. It isn’t a particularly nice thought, but it’s one you have to become used to.

You see, I am an eternally sad human being.

People tell me I’m fine, that they see me and I have a conversation with them and I smile. And I won’t deny this. But it feels like the whole of me is hollow. If you tried to search for something deeper, you wouldn’t find it.

It’s a strange feeling to explain to someone who has never felt it and I don’t think you could ever understand if you haven’t. It’s like I’m drifting and yet at rock bottom at the same time. I can’t think. I can’t feel.

Perhaps I shouldn’t confess this but I rode to University the other day and I nearly crashed three times. I don’t know why. You might not believe me now but I am a perfectly capable driver. But there’s those moments were life drifts you by and you don’t even realise. Everything is a blur and the next thing you know, you’ve rear-ended a car (I have not done this). It was distressing to me when this happened because it has never happened before.

But what do you say to the doctors?

When it comes down to it, I don’t know if this hollow feeling is my Asperger’s or depression. The line is surprisingly thin. I’ve had issues with my mental health before so you’d think I’d know, yet feelings aren’t as clear cut as that.

It’s like floating in perpetual nothingness. It’s like Alice falling down the rabbit hole. As a whole, it’s dark and she keeps on falling and she can see things pass her by that she can’t reach. She wonders if she’ll ever reach the bottom and if she does, whether she’ll hurt herself. It is a terrible but relevant metaphor.

And in the end, you give advice that you very seldom follow because you’re lying in bed instead.

Weirdo

“You’re weird.”

This is not an unusual thing to be said about me. Although, all anybody seems to say about me is that I am unusual. Being called weird, odd, and a freak is something I’m relatively used to. Some say it as an insult and others as a simple statement about my personality.

Either way, it left me for many years wondering exactly what it was about my personality that seemed unable to connect to social standards. Perhaps it was due to my Asperger’s. Or maybe I’d have been weird anyway.

From a young age, I was compared a lot to Wednesday Addams. Mainly due to my unconventional dress sense, my resting bitch face (even from early on), or just the fact that I wasn’t interested in the same things. I was always distanced from everyone else as an outlier. There was never a time where I felt I ever belonged.

I’m not going to pull the whole ‘I’m different from other girls’, because to me the whole statement is complete and utter crap. It was never a matter of being different from other girls- we had plenty in common- but I struggled to say or do or wear anything that people didn’t find me weird for.

Whether it be my Jack Skellington hoodie, or the fact that I didn’t listen to chart music, or the fact I genuinely had no understanding of social interaction, weirdo gets dropped on the daily. All I have to do is say something and you can see the confusion or amusement in others. And the worse thing is, I never meant to cause that kind of reaction.

When I was at school, a security gate was added at the front gates and I, being rather weak, sometimes struggled to open it. I opened the gate once and I called weird for doing that. How can I open a gate weirdly? Apart from the fact I was trying to pretend I wasn’t actually struggling to open it?

Either way, it feels like I can never win. What would I ever have to do for people to see me as a normal, functioning human being? The trouble is I am the complete opposite of a normal and functioning human being. I have a mental illness, I have a disability, and social norms mean nothing to me. Of course, I wouldn’t leave the house naked but generally, I don’t have any concept of what exactly I have to abide to, especially when it comes to interaction. Even my mother (to spare my feelings) calls me ‘different’ and ‘quirky’.

“I would have said you were quirky, Hannah. I’ve just always known you were different from the other kids.”

Oh, lovely. Thank you, Mother. But this is evident even when it comes to situations like dating. A lot of guys keep on telling me that I shouldn’t say that or I shouldn’t do that or I didn’t flatter them enough. Tough shit, I guess. I’m always Katherina. I’m always the Shrew. I’m the spirited female that needs to learn how to bend over backwards to avoid bruising people’s ego. Tragically, I’m not all that flexible. As I get older, this becomes more evident and I become even less flexible. I guess guys don’t like it when they tell me not to swear and they get f*** off in return.

I’m the weird one for never making the effort. I’m the weird one for wearing ‘manly’ clothes and then going out in a dress. I’m the weird one for watching Halloween movies all year long. I’m the weird one for plenty of things that I frankly don’t care about anymore.

It would be greatly appreciated if people realised that I don’t take ‘weird’ or any of its synonyms as an insult anymore.

“Not that it’s a bad thing…”

Then stop bringing it up. Because quite frankly, I’m always going to be weird. It’s always said in half expectation that it will make me slightly less weird every time it’s said to me. It doesn’t. In fact, I strive to be weirder. So keep that in mind next time you look at me and think I’m a weirdo.

 

 

Some Things You Need to Know- Emotion

It’s been a while since I last wrote on here and for that, I apologise. It’s partly due to being busy and partly due to not being able to find the website that helped me find a detailed list of Asperger’s’ characteristics. I’ve found it now so it’s fine.

This post is about the emotions of people who have Asperger’s syndrome. These characteristics are easy for me to write about as I relate to them all on some level. One of the main reasons that I was questioned for Asperger’s was because my counsellor noticed that my mood patterns were similar to those who have autism. My moods were very level and I often didn’t feel anything. When I did, it went from extreme sadness and anger to extreme excitement, depending on the situation. There was no in-between. This is an indicator of Asperger’s. Not all the time, as it can be an indicator of other things, but usually.

For those with ASD, rage, anger, and hurt may be expressed in unexpected ways. Well, I have a lot of anger issues, that’s for sure, and pretty much anyone that knows me can testify. Like others, I will leave it to build until I suddenly snap. I don’t think anybody outside of my home has seen any of my unexpected outbursts, which is good, and I hope it stays that way. One time, my dad cooked me dinner earlier than my usual time. It was thoughtful of him but all I could think of was that he hadn’t cooked in my usual time scale. That upset me greatly. So I may have yelled at him, gone in my room, and not gone back downstairs. Over something as simple as my food prepared earlier than usual. That is part of my Asperger’s. When it happens, it’s strange to me because it doesn’t register that I’m behaving the way I do and it isn’t until afterwards that I realise it was wrong. It’s very much a black out moment.

Perfectionism. Now, this isn’t a word that people would normally associate with me but if you’re looking for it, God’s in the detail. One issue that I’ve always had is that I never hand in my work because I never think it’s good enough. This was a big problem in A-Level. Not so much anymore. Mainly because I have to give my work in at uni, else I will fail. I will forever be re-writing my work yet it is never good enough. There are other examples but we could be here for a while, so let’s leave it there.

Another example of emotion is being easily overstimulated by sound, crowds, lights, and smells. This is probably one of the worst ones of all for me, particularly being at uni. People find me very boring but in all honesty, I couldn’t care less. A certain type of sound, smell, feeling or lighting can make me incredibly anxious and on some occasions, nearly inconsolable. I turned up to a birthday party once and we were standing in the garden. The music and the talking was too loud so I left and cried. When I came back, I asked the DJ if he could the music down slightly. I mean, honestly, only slightly and it was still pretty loud. Everyone kept on telling me I was being boring and that at my age, I should enjoy loud music. Well, I don’t quite frankly. This kind of overstimulation can stop me from leaving my room and socialising. A lot of people can also mistake me for being lazy when it comes to staying in my room, but it’s mainly because I haven’t got the energy to leave.

Lastly, another common example is an inside feeling not matching outside behaviour. Apparently, I either give off a very calm or rigid demeanour. This can usually be quite common for anyone with ASD. However, this was a big problem for me in the past because I would be having a panic attack and nobody would notice. When I’m really bothered by something, that’s usually when someone doesn’t notice. People only ask if something is wrong when I’m fine, mainly because I look constantly annoyed or angry. When I am anxious, I usually brush my fingers with my thumbs or hum lowly to myself, which is not something that people will normally pick up. Therefore, people are quick to assume that I am fine.

Outstanding Failure

So there have been two factors recently that have again made me question just how outstanding Hagley seems to be. Just for a disclaimer, I would like to add that these opinions are not to be associated with every student and my criticisms do not reach the whole staff. However, these two factors come in the form of a student in need and a letter.

Two days before I returned home for Christmas, I received a letter from my old high school and sixth form, no doubt asking me to return to speak about my experiences of university and advice to offer for A Levels. My response, to put it quite simply, was f*** off.

When I had my mental breakdown, it was hardly acknowledged and even less so when it was discovered that I had Aspergers. Only two, maybe three, members of staff supported me throughout the whole time of sixth form, one who left halfway through for another job.

I would like to give a special shoutout to Mrs Morley, an absolute star. It was often that I wouldn’t be in school or I would turn up only to go home soon after. She was the accommodation officer and to her, my reasons were my final word and she never questioned me, nor pushed me. As for some of my teachers, they constantly pushed me for a reason as to why. It was treated as ‘suspicious’ that I was constantly ill. I was far too embarrassed to explain time after time that I had depression and anxiety. My response was generally: “it’s none of your damn business.” Of course, I couldn’t say that so I got questioned a lot.

Even with school support, I was lucky to receive even that. It was either too late to fit me in, the service was limited or I didn’t get anything at all. It was pretty dire, to be honest. It wasn’t as if I was even asking for much and I hate to think of those who needed more support than I did.

Most of the teachers were altogether okay, but I questioned whether a few were really fit to teach and still do. I had one tell me in all seriousness that there was nothing wrong with me. Even with my diagnosis of anxiety, nearly none of the staff treated it as a serious condition, one that could ail me, particularly in music. Anxiety was not counted as an illness that was holding me back. In general, I just wasn’t clever enough, I wasn’t working hard enough, or education just wasn’t for me. In every way I had been discarded as a student who had little value to them so I didn’t matter.

Furthermore, to throw this in as another reason I’m frustrated, I wasn’t doing a subject seen as intellectual, therefore, my education was not as paramount. Many times there had been complaints about Health and Social, the teacher in general. What did the member of staff in charge say? It didn’t matter because Health and Social wasn’t a ‘real’ subject. Well, thank you for your concern. I can see how much your student’s education means to you, you absolute prat.

All of this was incredibly frustrating to me the whole time I was there. As a disabled and mentally ill student, there really was no support for me. The only time I was helped was when those few teachers put themselves out for me. So a big thanks to them else I would have received nothing.

The head teacher loves to boast about their status as ‘outstanding’. Perhaps in exam results but their support for students leaves something to be desired. This is reinforced in another student in need who has been left by the school to deal with their issues on their own, mostly by the Head himself. I can’t even begin to say some of the students who misbehaved and were still allowed to stay at Hagley, and one student needs help so suddenly the school can’t deal with her. I’m sorry but that only reinforces my terrible impression of them.

I don’t look at my time at sixth form in fondness, not at all. I don’t think anything could ever change that. I’m lucky to have been able to move on and succeed on my own, and I only wish all the other students the same.

Some Things You Need to Know- Language

This leads on from my cognitive learning post in terms of traits of Asperger’s and how to recognise them easier.

One of the first traits is pronoun reversal. This is when someone may refer to themselves as “he”, “she”, “you” or “them”. Personally, I do not do that but when I was younger, I sometimes used to refer to myself in third person. However, I don’t do that anymore so this isn’t something that you’ll find me doing unless I’m joking.

Another one is excellent vocabulary. I wouldn’t say I do when I speak as I tend to get words mixed up somewhere between my brain and mouth, which is why I tend to struggle with sentences and sometimes stutter or say something that doesn’t make any sense. Although, I would like to think I write well. I always have done for my age. Additionally, conversation can become stilted, meaning very formal. I wouldn’t say always but I have been known to speak formally and I can do so very often, depending on who it is.

Furthermore, it is usual that I use stock phrases, or phrases are borrowed from other situations, or people. Even before I was diagnosed, I was perfectly aware that I copied people and their sayings, especially from television, books or movies. Nobody would notice and I always managed to fit something in. I copied a lot of jokes because humour doesn’t completely make sense to me. If people laughed to the joke I copied then I would keep it. Usually, I got told they’d already heard that one, which makes sense since I usually don’t come up with any of my own. I am unable to do that. I am, however, very good at sarcasm and that is the only thing I can use for humour.

Makes honest, but often inappropriate observations. This has to make me laugh because this is me all over. My whole time at high school and sixth form is littered with honest but inappropriate statements. This is often accompanied by people assuming I was a bitch. Fair enough. There aren’t many that I should repeat and wouldn’t want to, mainly if anyone who I directed this to is reading it. If you’ve met me in real life, you’ll know what I mean. Let’s just leave this at a few examples so you get the jist: “You need to get your bikini line waxed”, “You have no talent. I don’t know why you’re here”, and “I don’t like the way your hair is dyed. It looks terrible.”

I have difficulty adjusting volume and speed in my speech. I understand I have a boring voice, okay? I have been told that before and I can’t necessarily disagree. My voice is very monotone most of the time and I speak very quietly. Sorry, but that’s how I sound. If you point it out then one) I don’t give a shit and two) there’s nothing I can do about it so complain all you want. My voice does change but only in certain moods such as panic or excitement. That’s about it.

Additionally, another aspect is literal language. I don’t always take things literally. I can usually tell when people don’t mean it but there have been a couple of occasions where I haven’t understood why I’m being laughed at or yelled at when people have told me to do things. Don’t say things if you don’t mean it, basically. Once my dad told me, sarcastically, to put the kettle on the hob. We have an electric kettle. So I put the kettle on the hob and when he told me off for nearly turning the heat on, I couldn’t understand why because that’s what he told me to do, sarcastically or not. So, I can take things very literally. Sometimes.

Two aspects I don’t have but I’m going to mention them anyway because they are common in Aspie’s. One is that speech may have developed earlier than usual or started then stopped for a while. This may be hard to spot if it is a first child or if other children developed quite quickly, but usually it can be picked up quickly. Another trait is echolalia. This is when a child will copy what someone else is saying frequently, as if mimicking them. Usually this is mistaken for a child being naughty but can show a lack of understanding when conversing with someone else.

Lastly, a lack of understanding concerning some language, such as directions. I have a lot of difficulty understanding directions and before I was diagnosed, I thought it was because I was simply just too stupid. It wasn’t hard to find a place when it’s only a two minute walk away and you take a simple left but to me, it doesn’t make sense. You can describe the place where I live and the areas within five minutes radius but I still wouldn’t know what you’re talking about, but if you show me visually, I know exactly where I’m going. Visually, I could go for ages but by spoken direction, I have no idea what’s going on. It’s pretty annoying.

So, those are some of the traits of Asperger’s in terms of language. I hope that made sense and if it didn’t, google it.

Some Things You Need to Know: Cognitive Learning

Since I have been diagnosed with Asperger’s, I’ve been able to understand myself better and progress at a much easier rate for me. Yet I am perfectly aware that other people don’t understand Asperger’s or the traits that come with them. Because of this, some people are confused about how I have Asperger’s or how the traits are evident in me.

My mother usually says: “Well, we always knew she was socially inept.” People laugh and say it’s true, but this goes far past that. There are more to people with Asperger’s than being socially inept, and even if it was, there are tiny traits that lead to that. It isn’t something that can easily be tucked into a box and left, to assume they are only one thing or another.

So hopefully, this will lead to a small line of posts that cover a range of traits and how you can recognise them in me. As you can see from the heading, this is a post about the cognitive learning traits evident in those who have the disorder.

One of the first traits of cognitive learning for people with Asperger’s is for them to have excellent memories in specific topics. Well, I know about 76 musicals off by heart and to be honest, for those who know me, is it really that much of a shock? I can tell you the whole cast of Waterloo Road, particularly in season order. I also remember nearly every book I’ve ever read, which is a lot. So, yeah, I guess I do have excellent memory. Before I got diagnosed, it wasn’t a secret that I was interested in these kind of things and that I knew a lot about it, but a part of me was always embarrassed. I was perfectly aware that I had a talent for remembering facts about my interests rather than school subjects, no matter how hard I wanted it the other way. It was also embarrassing to me that I did know those things, even though they made me happy. But now, I just don’t care. It’s a talent. Different to other people’s maybe, but still a talent.

Secondly, there is the issue of unregulated fears. This is usually caused because Aspie’s have problems with judging situations, causing them to be fearful and perhaps less fearful in dangerous situations. For example, talking to someone I’ve never spoken to before. What will I say? Shall I start the conversation or should I wait for them to? Do I answer with a short answer or long, and if long, would it be relevant? If short then what if it leads to an awkward silence? Can I appear upbeat and happy? Am I coming across as uninterested, bitchy or abrupt? Am I standing in the right way? Do I look awkward, intimidating, relaxed? How should I stand? How are the rest of them standing? Should I get a drink? If I get a drink, how will I leave the conversation or will I invite them with me to be polite? So, as you can see, the list is never ending and I can think of a hundred more questions. This happens every single day, even with people I am completely familiar with.

I guess you can say people feel this way frequently and are common questions that people wonder about, even if they haven’t got Asperger’s. The difference is you get the anxiety with it. Always. My autistic tendencies always come out more when I’m anxious. I get the usual symptoms, such as chest aches, migraines, tremors, heart palpitations, muscle aches, and sickness. Every time I wake up in the morning, I get that and every time I even do anything, I get that. In fact, there aren’t many times in my life when I’m not anxious and this comes from my fear of social situations. Not even that, just feeding myself, when I’m going to shower, when I should check my emails, etc… When I get these fears, some of my autistic tendencies tend to come out too. I hum to myself, I can cover my ears sometimes, rock a lot, pinch and scratch myself. You can imagine how that looks. I don’t tend to do it unless I’m alone. I am very conscious that it isn’t something you should do in public so I usually just scratch myself lightly.

Another thing is that people with Asperger’s are very detail-orientated. This can apply in two ways: having difficulty seeing the overall picture or situation or applying the same level of detail to a situation whether appropriate or not. Now, when this comes to work, it gets a bit of a nightmare. I have no idea what constitutes as appropriate detail or not. I don’t think I’ll ever know. I don’t know when to start or stop and everything else in-between. Usually everything I do is too detailed. I am a sucker for accuracy. This can apply to anything and everything, such as representation in the media, what I write, what other people write, and cooking. If it isn’t the right detail for me then it will continue to bother me.

Another example of this is when I go out for a meal or a party. I never know what to wear. I either underdress or overdress. It’s never clear to me what is appropriate or not. I either get it right or I don’t and I can never tell until I get there. Sometimes I’ve turned up in a dress and heels when they’ve been wearing jeans and flats. Sometimes I’ve dressed as casually as possible and found that they’ve been dressed up. I just have no idea.

People with Asperger’s also have exceptionally high skills in various areas but low in others. My best example is always my GCSE results. I loved English and Music. I didn’t revise either and still left with an A* and an A. Then I revised Science and Maths for two months beforehand and practised past test papers and still came out with just about a B and a C. If I love it, I will know pretty much everything about it. If I don’t, well, then I’ll never know because it never seems to stick. This can be a little frustrating, especially as I did work hard and I didn’t get the result I was expected to. I guess it’s going to be one of those things in life that I’m always going to struggle with.

So these are under the cognitive traits of Asperger’s. I hope it makes at least a little sense and helps you understand it a bit better. I know some of these may apply to people who do not have Asperger’s, but it all comes together to create only a few of the traits that are evident in this developmental disorder.

Enough

You’re too lazy. You’re not motivated enough. You’re not intelligent enough. You’re not pretty enough. You’re not fashionable enough. You’re not funny enough. You’re not laid-back enough. You’re not cool enough. You’re not nice enough.

When was I ever enough?

And to be frank, enough was enough.

“Hannah, have you ever considered that you have Asperger’s?”

No. Of all the things I had considered, Asperger’s wasn’t one of them. Without meaning to sound unfortunate, I always knew there was something wrong with me. Other people didn’t make sense to me. I didn’t make sense to other people. It was a daily struggle to understand how people thought and felt. And it turned out, they felt the same way about me.

I’d considered that I had OCD. No, I didn’t have enough traits. I’d considered that I had ADD. No, I didn’t have enough traits for that either. People joked I had autistic traits, but I was too high functioning for that.

I was a teenager. What was worse, I was a girl. You get all the dismissive things that people say to teenage girls. “It’s a phase.” “It’s your hormones.” “You’ll grow out of it.” I was still waiting to grow out of it. In the meantime, my behaviour and life was becoming worse and progressively more restrictive. Time was ticking by and nobody knew what was wrong with me. Nothing was wrong and everything was wrong.

It was my counsellor that first suggested it. It’d been bothering me for a long time about the way people felt differently to me. I’d had a mental breakdown a year before and I thought it was the result of that. Then she asked me if I’d always felt that way. The answer was yes. For as long as I could remember. That’s when she asked me.

My example had been when I went with my friends to Alton Towers. At the end of the trip, they’d all said they’d had a great day. Most people would probably say the same. Did I have a great day? I don’t know. Was the weather nice? Yes. Did I have lunch at the right time and did it fill me up? Yes. Did I get a thrill from the rides? Yes. Did anything or anyone upset me? No. So I had a good day. That’s how I know I had a good day. But did I feel anything about it? No, I didn’t feel anything.

I don’t ever remember having good days. I have good moments and they are very far and few. The only time I consider having a good day is when I am completely overcome with excitement. Examples include: meeting Mary Poppins at Disneyland, getting new books and films for Christmas, and seeing Julie Andrews and Danny Elfman. Those are some of the only memories I have of having a good day. But that was only because my excitement was extremely palpable.

How many bad days did I have? How about the day my orange juice leaked over my new Les Miserables book? I cried on the way home, I cried whilst at home and I kept on crying till mom came home with a new one. How about the time all of my friends used my colours without permission and put them back in the wrong order? Or when my parents said we were going out for the morning and came back in the afternoon? I can’t even begin to count my bad days. Or my okay days.

“Go home and think about it.”

I did. This was my chance to finally see if there was something wrong with me. A new lead. As soon as I got home, I read all about Asperger’s, from professional to personal perspective. And all of a sudden, everything seemed to make sense. It’s like having a jigsaw for 17 years and knowing there’s one piece missing. Then someone hands you that piece and it fits perfectly. Then you suddenly wonder how you didn’t see the full picture before.

Issues with social skills. Well, that’s always been a problem. Eccentric or repetitive behaviour. I did think I had OCD, didn’t I? Unusual preoccupations or rituals. Well, some things make sense in a certain order, don’t they? Communication difficulties. I’m just shy (sort of). Limited range of interests. I like what I like and that’s not an issue. Coordination issues. I’m just a very awkward person, that’s what being a teen is all about. Skilled or talented. I wouldn’t rate myself in this but I have been complimented occasionally on certain things so I’ll say yes.

Then it was a case of: where do I go from here? Am I serious enough to want a diagnosis? If so, how do I get one?

So I did a whole Google page of Asperger tests just to be sure. After scoring high on all of them, after I retook them all at least three times, I decided that I should probably seek professional advice. Of course, with my mother’s advice first.

“Are you sure you have Asperger’s?” “Do you really need to know?” “You need to think carefully about this.” “I don’t think there’s anything wrong with you.”

I hated these kind of questions, ranging from professionals, family and friends. Yes, I am sure I have Asperger’s, else I would never have bothered to go through a lengthy process, would I? Yes, I do need to know. This is something someone should probably know about themselves. I have thought carefully about it and discussed it at length with my mother, my counsellor, and my educational psychologist. And it doesn’t matter what you think.

It was a very straightforward process really… Go to the GP. No, you can’t do that. You have to take the AQ50 test. I’ve already done it…. Well, we need evidence. Go home, take the test again. Screenshot it. Book another appointment with the GP. Great but we’re going to do it again with you. Take the test again. Get the same score again. Ask me extra questions just to be sure. Recommend me for diagnosis. Get rejected by CAHMS. I’m seventeen, nearly an adult. By the time they get round to it, I’ll be too old. Get rejected by adult services. I’m not eighteen yet. This goes on and on until my mom starts phoning people. Now, she doesn’t get named the family bull dog for nothing. She manages to speed up the process and I get an appointment shortly after my 18th birthday.

It was in Birmingham. Mom took the day off to make a day of it. We were meant to see them at 2. We stopped for lunch where mom didn’t realise we’d pulled up at a Harvester. I mean, it’s easy to not notice the big sign on the side of the building, the board by the front door and the logo printed on the menus as we come in, but hey, we all get confused in our old age.

Then it was off to the assessment centre.  We were told to sit in a small waiting area and were offered drinks. The lighting was really bright and the whole space was nearly all white. They were fourteen minutes late. I thought they’d be more punctual, considering they were fixed appointments and they are talking to people with Asperger’s.

When I went in, I struggled to walk a little. I’d burnt my foot the day before on the exhaust of my bike so I was trying hard not to limp. Dr Man was the kind of observant psychologist that sits and watches you. He was watching me walk and to be quite honest, I was just trying not to drag my dead foot behind me (I’d been stupid enough to wear Dc Martins). The other psychologist, Dr Woman, was more the talkative psychologist. She wanted to hear me speak.

They sat us down. They’d asked us to do a 100-question online questionnaire before we went and for me and mom to separately fill in a booklet about me. Our answers had a positive correlation of over 90%. So we talked for three hours, about my childhood, about my views, about my time at high school. My mom made a point of how she had never seen anything wrong with me while I was younger. I was just different. Let’s not think about the time I screamed the place down because a boy had not put my crayons back in colour order, or that I’d always been advanced in reading and writing, or that I never participated in imaginary play or spoke to anyone for the first two years of being at primary. Apart from that, there wasn’t much sign that I struggled with issues related to Asperger’s.

After three hours of extensive talking, they sent us back to the waiting room for ten minutes. The two doctors were discussing whether they should give me a diagnosis or not. They called us back in shortly after and we sat back in the meeting room.

“Sometimes we bring people back because we’re not sure whether they do have it or not. It’s not always entirely obvious. Normally, we discuss it for a while but we didn’t think there was any need.”

Basically, you’re very autistic and it wasn’t really a discussion. I was given a piece of paper with it all written on, given two books to read and plenty of advice. I know they were trying to help but Dr Woman was all for the positive outlook. Plenty of people with Asperger’s live fulfilled lives. Most of them are at the top of their career early. It doesn’t change who you are. You will always be you.

That’s fantastic. I already know these are all true but I had to remind myself that she was trying to be nice. I thanked them, smiled at them and left. I have Asperger’s.

Now, all of my issues made sense. All of those things that I thought wrong with me wasn’t actually something that was wrong; it was a part of me. The expectations shifted and I could finally flourish in a capacity where I was aware of me and the situation I was in. Suddenly I was enough.