The Atypical Delusion

If one does not understand a person, one tends to regard him as a fool.

C.G. Jung

 

There is a fine line in Asperger’s. Even for me, it is hard to distinguish what is the disability and what is quintessentially me. People always say they understand, whether that be me or my disability, but the truth is, nobody understands. Perhaps someone else with Asperger’s, yet these aren’t people I come across daily.

I always have a question mark stamped over my identity, over what makes me who I am. When I discovered I had Asperger’s, it felt like my questions were answered but it turns out that with this disability comes more questions. It doesn’t cure me and it certainly doesn’t change the way I feel inside. To know that I will always struggle through life in ways that others will never really understand, to always have reoccurring depression and constant anxiety, that truly is enough to crush someone.

But the main issue here is those mockingly pitiful words that always come out of people’s mouths- “I understand.”

I understand. Of course I understand.

Words that I always hear when people know about my disability, about my mental health. But no, you don’t. I now understand that I should never expect any of you to understand. Worst of all, none of you do understand because you have absolutely no interest in doing so, because people are inherently selfish. I’m not saying that people don’t try or at least make exceptions for me, but people simply don’t care to understand. If it doesn’t affect them then why bother? Let’s be honest.

Friends and even my own family really don’t have any true desire to understand. As long as my autistic mannerisms never slap them in the face then why pay attention?

With this, you’ll never know my frustration. One believed trait of autism is that those individuals don’t understand social cues. But I’m here to tell you now, I know when I’m being made fun of. I know the exact moment you think I’m funny because of the way I walk and talk. I know the moment that you lose interest in anything I have to say. I know the moment you find me some kind of easy joke.

I’m autistic, not stupid.

Hannah is an easy target. Hannah is the weird kid who walks strangely, who talks with a bland voice, who has no social interest, but is happy to still tell you why Waterloo Road is a good television show years after it was any good at all. Hannah is the one who shows no emotion but then claps suddenly because the new Star Wars will be a good movie. She’s the one that doesn’t really care about her appearance or whether she looks like a boy or girl.

People love outliers like that. To know, no matter what, that we can always make fun of Hannah.

Yet, they think I don’t notice or that it doesn’t hurt. Banter is banter. But when everyone laughs at the way you are, from as far back as I can remember, then it becomes frustrating. It’s a reminder that no matter how much I pretend, I am the disabled one. I am the tragic one that is so easy to make fun of.

Neurotypicals will never truly understand the extent of that confusion. People with autism have definitive traits of talking about subjects that only they want to, to do activities that only they care about, and to be selfish. But I find that it’s not autistic people that are selfish.

I try my hardest every day to consider other people’s opinion and to find what they do interesting. I try my hardest to be a good friend and good family. To know I have Asperger’s is to be reminded daily that your existence is nothing but a mere inconvenience for other people. I always try and dumb down my traits, to be normal, because maybe then people will take me seriously.

People think I make no effort, but I do nothing but cater to others. There’s always that voice that tells me I’m being annoying, I’m not considerate enough, I’m not being a good enough friend. All due to my autism. And no matter how much I try to overcome my traits to be more considerate, no matter how much I put myself out for others, I will always be the same archetype. I’m the socially inept one. I’m the bitch. But ultimately, I am the selfish one.

Yet, people who read this will try and disagree. They’ll say that’s not what they thought of me or they would never think any of these things to be true. But I don’t believe that to be true. Not really.

Because in the end, you don’t understand.

Having Asperger’s is frightening. To not understand anything and to struggle with the most menial tasks, and to know that other people either find it funny or frustrating. To know that other people have no intention of indulging my interests but I must always indulge theirs.

A favourite is how guilty can we make Hannah feel for things she’s not aware of, even as we pile shit on top of her. I’ll always be the rude one, the blunt one. I’m always the one that hurts other people’s feelings. I mind my p’s and q’s with the knowledge that people will use my autistic behaviour against me. And they do.

And when you hear that exact accusation from someone who you’ve always made the effort for, someone that you’ve always bent backwards for, it’s not a good feeling.

Yes, I suppose these are all universal feelings. But when I say this is a common occurrence, it’s pretty much every time I talk to anyone. Or even look at anyone. To question how you sit, how you eat, what your expression is. To question your whole existence because that voice reminds you that you are disabled and no matter how hard you try, you are odd.

Then I hear the same platitudes- “Does it matter if you’re weird?”

Well, yes. It does. Being weird is not a hindrance, but to feel that you never connect with anyone, that’s the worst feeling. There are only two people I have truly connected with in my entire life and they are my brothers, who are also disabled. Yet, everyone wants to be understood, to feel like someone knows them and accepts them. I don’t feel like I understand myself half the time, so to expect that of someone else would be unfair, in some respects.

I see other people in relationships or in friendships and I like what I see. So I imitate it but it’s not the same. Perhaps this is where I upset someone, but if we’re friends, most of my behaviour is probably standard behaviour I believe to be worthy of a friend. When I imitate others, then for a second, they forget I am disabled.

And I guess in most ways, this is where the fine line is drawn. I can dress myself, talk to others, and study at university. So people forget just how disabled I actually am. But that is a pretence. What you see is all a pretence. It becomes hard to upkeep, so when people see a glimpse of how autistic I am, it is either a joke or it bothers them.

I don’t want to be funny. I’m not trying to be funny. I don’t want to be laughed at for something I cannot control. And I definitely do not want to be blamed for my autistic behaviour. This is where the crux of the argument is, where people really do not understand. To most, autism is a hypothetical situation. Even if you have autistic children or friends. You don’t really understand what is happening- how they think and feel.

Although it may sound as if I’m asking you to understand here, it’s more an expression that I know you don’t. And that’s okay, because I now know that asking that much is quite impossible. People won’t understand and so, it’s really whether you accept the way I am. Sometimes that’s still not enough.

 

 

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.

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.

Young Carers

The forum of young carers is a topic which I have wanted to address for some time. In what way and the tone that it would be set was debatable. It needs to be expressed in the finesse and delicacy that it deserves and ultimately, I did not think I could bring that. Yet, I have found a reason in these past months as to exactly why I should write this post.

To those who know me well enough know that I have two younger brothers who are both disabled. This immediately sets me in the category of a young carer. At the age of six, I became hundreds of thousands of children and young people across the nation who cared for someone.

I began a ‘scheme’, if you will, called Dudley Young Carers. This opened a world to me for which I will forever be grateful. I met people who understood and didn’t judge. We never really talked about who we cared for or why we were there. It was to make friends and to socialise out of those usual social boundaries.

Most of the people I know of seemed to have had harder lives than me and it made me thankful for what I had. There were children/adolescents from broken families or intact families, caring for their brother, sister, mother, father, grandparents… Whoever. And they still continued their lives without a fuss.

I find these people completely inspiring and courageous in ways I never felt.

Young carers rarely ask for recognition but a voice. They are some of the most under-recognised groups across the world and they go through hardships in their childhood and adolescence that some may never go through in their lifetime.

But this is the real issue here.

No matter how much these people deserve recognition and support for the lives they maintain, there is hardly any call to do so. You can tell me reason after reason why I could be wrong. National holidays for young carers, national charities, local services, and local support from professionals. But I stand by what I said.

Particularly after the cuts to services, there is a thin line between what is now a young carers’ service and complete extinction. I have sympathy for the volunteers, workers, and kids who cope with this system and still maintain optimism. Because to me, even with all this ‘support’, young carers are still brushed aside.

There are children/adolescents/young people out there who do amazing things and you can tell them that a nod of the head from a professional or MP or a charity is enough. Well done, kids. We admire you but we can’t help you. I don’t condone this whatsoever.

Tell this to the small child who watched someone die or their parents have died/left them. Or to the kids who get passed around by guardians/older carers. To the kids who are failing or not attending school. The kids who lose a sibling and still maintain household chores. Or to the kids who looks after their siblings and their parent/s. Those kids who go to school, help at home, and have a job. Or those exact kids who will grow up battling emotional or mental illness.

Go on. Tell them.

You deserve this pat on the back but nothing more.

Am I upset? Yes. Am I disappointed? Yes. Am I angry? Yes. But am I bitter? No. Because this is not the right way to explain how I feel about this. I was privileged to be part of a service that thrived in the past and left before it truly went downhill.

See, I’m not speaking ill of the people who help run this service as they have the best intentions, so I salute you. But the people at the top who tell them that these children- our children- don’t deserve the support they need. That they can stay at home without any help whatsoever and make the best of what they have.

And for those adults and professionals who allow some sort of recognition and yet still trample you to the ground. Letting you know that no matter what you do, there are people who can receive everything in the world on a silver platter who deserve more than you ever could. For those few, I hold you in the lowest regard.

To see something treasured by those families and children- not just the service but the additions it brings- be slashed into something minimal is heart-wrenching. Not only is this the fault of the government for the lack of debate it brings to these issues, but some people lower down who agree with the government. That this is not an issue to be taken seriously.

This is nothing if not serious.

These amazing children/adolescents/young people are more inspirational than I can bear to say or write down in so many words. There are lists of reasons why they deserve endless praise. And they should, above all, be respected as the human beings they are.

From,

Someone Who Knows.

 

 

Advanced Farewell

Recently, a new diagnosis has come through for Thomas, my younger brother. Since he was born, it was believed he had a form of cerebral palsy, which may turn out to be untrue. We now know he has schizencephaly.

Schizencephaly: this is a rare birth defect that causes a slit or cleft in the cerebral hemispheres of the brain. These can appear on any side of the brain and tends to be filled with cerebrospinal fluid.

Not much is known about it since it is so rare. People who have this condition tend to be life limited. And of course, this is what the post is really about. We were told two weeks ago that Tom has only half of the average life expectancy, not even that much. When my mom asked the exact time period, the doctor said: “Enjoy the time you have left with him.”

Well, first of all, mister doctor man, that is not an answer. And second of all, I’d enjoy the time I have with him anyway. He’s my little brother. He may be a little shit, but he’s my little shit and I will persevere accordingly.

One of the saddest things about it is that my brothers are the only people in this world who see me as I truly am- a God. Who’s going to call me ‘sugarplum’ and ‘honey boo’ when they’re gone? That’s the real question.

A lot of people see it as a shock and tragedy. But really, there is nothing surprising about it. When he was born, we were told that neither he nor Harry would live past the night, and twelve years later, they are still here. So it’s already a miracle that they’ve lived this long. We always knew he wouldn’t have an average life span. It’s a fact we’ve always been aware of.

So when we heard this news, it only confirmed what we already knew. I guess in some ways it makes the realisation more poignant and fresh, but that’s all.

In a natural progression, you expect the parents to go first and then the eldest to youngest of children, in some kind of order. It feels strange to check yourself when you think of the future, to remind yourself that the children may not outlive the parents, and that I could outlive them all. I always imagined I’d be old and the boys would be there but I might be an only child again.

“I’m sorry.”

What are you sorry for? You didn’t put the cyst in Thomas’ brain. He only has two thirds of it left and they’re surprised he’s as well as he is. So be thankful for small miracles, I suppose.

I’m not sorry. I’ve had nearly thirteen years with my brothers, more than some other people have had. He could live into his twenties; he could live until tomorrow. Like anybody else, there isn’t a guarantee. He’s happy and that’s all that matters. Thomas certainly lives life on his own terms. To me, that’s the greatest kind of life he could have. I wouldn’t change a moment.