It’s not easy admitting that you aren’t well. It’s a million times harder when it’s a mental illness. The decision to stop running away from my disability was the biggest decision I have ever made in my life, and it is a decision that will affect me for the rest of it.
Mental illness is a deeply personal thing. No one else can see any visible effect on the body, because the damage is kept hidden inside, far from anyone’s watchful eye. It effects every single action you do, every thought you have, every idea you dream up.
I was diagnosed with Autism at the start of secondary school, roughly seven and a half years ago. For six and a half of those years, I spent every day hiding the truth, with varying degrees of success. As I got older, I realised that I can’t hide this secret forever, and that eventually everyone will know. Everyone could tell that everything wasn’t as it should be, and I decided to tell everyone that I wasn’t a normal person.
The timing of my decision was actually very deliberate. I left it very late in my last year of school before telling anyone, with the hope that I could just walk away, without it having a huge influence on me. I think everyone is aware that I wasn’t the most pleasant person in school, if I’m honest I was uncontrollable, selfish, destructive , and the amount of opportunities I wasted, and the number of bridges I burnt along the way, is probably the biggest regret I have. You only have one chance at school, what is taught in the classrooms is only a small part of growing up. I missed out on a huge part of my teenage years, down to my own self-destructive nature, and an irrational fear of the unknown. If I could turn back the clocks, I would do it all again so differently.
I don’t think anyone can ever appreciate just how much something means to them, until it isn’t there anymore. Without that school, I definitely wouldn’t be at university. I certainly wouldn’t have the qualifications I hold, without the help, support and encouragement from every single teacher that had the misfortune of having to teach me.
As a teenager, it’s hard enough to grow up in a constantly-changing world, but it can be almost impossible to grow up in one that makes no sense. A lot of the time, the entire world passed me by, as I struggled with the simple things, like talking to other people, trying to learn simple things such as organising my notes and what books to take to school with me on a particular day. I was always playing catch-up, from day one, and I made it harder for myself by taking the starting pistol, and shooting myself in each foot.
The amount of chaos I created at school, unfairly distracting other people from their hard work, while I simply bounced around the classroom, making a nuisance of myself and generally just trying to hide the fact that I didn’t really understand why I was here, or indeed, what I was supposed to be doing. To every person in Carrickfergus Grammar School, that I annoyed, distracted, irritated, angered, wound-up and generally just made things more difficult for them, I really am sorry, from the bottom of my heart.
This past year, I’ve done a lot of growing up. I think I have finally learnt that you don’t always have to try and do everything on your own; it’s not a sign of weakness to ask others for help. I’ve found it a lot easier to concentrate on things, and I have been able to keep my work organised, something I’ve always found almost impossible. I’ve improved a lot on my ability to speak to people, although I can be a bit slow in responding to things, I’m much better than what I once was.
I guess the lesson is, I’m still learning. I’m still learning every day, still playing the game of catch-up, but I think I’m getting closer to where I should be. Hopefully, one day, I can say that I am at the same level as other people the same age as me.
I am unsure as to how many of you are aware that April is Autism Awareness Month. Over the course of this month, I will be writing a variety of features, not just about the individual that has Autism, but its knock on effect on the friends and family of that individual. My aim is to get the profile of the Autistic spectrum raised, in particular in Northern Ireland where it has slipped under the radar for many years.
Queens University Belfast; the first six months.
For as long as I can remember, I have always wanted to go to university. For a long time, I always thought people like me just can’t get the grades to get in. Thankfully, I proved myself, and a huge amount of other people wrong, and I was accepted into Queens University, to study Law and Politics.
With the excitement of starting a new chapter in my life, it also had with it an absolutely colossal amount of fears, doubts and worries. Would I be able to cope with the change? Could I do the work? Would I isolate myself, like I did in school, losing out on a huge amount of opportunities? All these questions floated around my head for some time, and some are still unanswered, as I begin to adjust to the largest change I have ever had in my life.
At the start, it was very very turbulent. I struggled to adapt to life around Queens, and the level of organisation needed to keep up with the workload I was given. Thankfully, a few friends from school also study the same course, so I didn’t feel as scared of the crowd as I thought I would have been. These people were a huge help to me, and helped me to get used to the different way of life at university, as for the first time in my life, I had responsibility for my own work and schedule, something that had previously been controlled by school. This was a huge step for me, and initially, it was a huge struggle to organise myself. I started to slip behind in my work, which culminated in a huge meltdown in the middle of the McClay library, late at night, which made me start to wonder if I was able to do it after all.
After the meltdown, it became obvious to me that I couldn’t simply continue with the same mind-set that I carried through my school years. Although at the time the meltdown seemed to be a huge blow, looking back it helped to focus my mind on what I needed to do, in order to make university work.
The biggest impact of university has not been the academic side of it. On a personal level, it has changed the way I look at things, and the way I cope with my ADHD and Autism. For most of my life, I have tried to hide my problems from everyone, because of the fear of being excluded. Looking back, it is one of the most stupid things I have ever done, and I wish I never did it in the first place. It set me back so much in my fight, and I’m still playing catch up, as university has meant I have started to do things, for the first time, that everyone else has been doing for years.
In the past, when it came to any sort of interaction with others, in particular when it involved emotions and feelings, I had a tendency to run a mile from anything in that area, due to an irrational fear of being different. When I think of the huge strides I have made as a person since the start of university, it hasn’t been a solo effort. Through university, I have met a huge amount of new people, and some of them have really helped me to improve as a person, and I don’t think they have realised just what they have done, and many of them are probably not even aware of how they done it. For me, being left to do their own thing was second nature, and I just accepted it as the way things were supposed to be. University has really opened my eyes, that there are people out there, who care and they care because they want to, not because they feel they have to.
Although I have only known most of these people for 6 months, it seems like I’ve known them for most of my life. I would trust them with absolutely anything; they have made such a huge difference to me since I first started the course. Without you, I would not have made anywhere near as much progress as I have done. You have made it bearable when it seemed like all the coursework assignments and deadlines were becoming too much to handle. You made it enjoyable when we have to sit in the library for hours on end because of an imminent deadline. Away from the books and the studies, It has been so amazing for me, for the first time in my life I have been able to spend extended amounts of time with people the same age as me, and some of the most enjoyable memories I have wouldn’t be anywhere near as meaningful to me.
On Sunday the 15th April, 2012, I said this;
“I want friends, I want to be able to have as good a life as anyone else, I really want to be able to try and be part of the group, but my Autism is like a glass box I have been placed into. I can see them, they can see me, but there is a barrier in-between me and them, it isn’t visible, and you have to look very closely to see it, but it seems impenetrable from the inside, and I don’t really know how people see it from the outside.”
The glass box I talked about, that’s my Autism. I always thought I would be stuck in it, that it was a permanent fixture in my life, and I’d just have to learn how to live with it. Now, I don’t know if it exists anymore.
I would like to dedicate this post to, in no particular order;
Katie Perry, Jack Balmer, Meg Ferguson, Andrew Hunter, James Kennedy, Chris Taylor, Rebecca Macleod, Lee Kennedy, Danielle McAllister, Lesley-Anne Wilson, Orla Gormley, Sarah Donnelly, Josh Hamilton, Thomas McCloskey, Sammy Wade, Catherine Guy, Megan McCullagh, Grace Lundy, Charlotte Shaw, Christina Parkes, Grant Robinson and Megan Somers. Also, a huge thank you to the QUB Law Society, who have done so much more than they were asked to do, and have helped me fit in, and feel like I belong here. Thanks so much, from the very bottom of my heart, I really wouldn’t be where I am without any of you.
For those of you who are on Facebook, I have a page set up that is there to help increase understanding of Autism and Aspergers Syndrome. The link for the page is ;
What a difference a year can make.
Its a commonly used phrase, all around the world. For me, it never made much sense, until 2012, when it rang true, in the most dynamic and life-changing way possible.
On April 13th, 2012, at 11:30 pm, I posted a blog entry online, that would lead to my life changing forever, and in a way I would not have thought possible. This one post, which was only a few lines long, was the first time that I had ever talked about how I felt. It was the first time I talked about the shadow that hangs over me every day, unseen by everyone, apart from myself.
For years, I tried to hide the shadow, and I guess it worked, in some respect. I managed to keep the entire world from knowing the state of my mind, and just how destroyed and fragmented it was. Mental illness is a very personal health problem. It does not give away any signs of ill-health on the surface, and is never immediately obvious to anyone, apart from trained medical professionals. The actual illness itself is only one part of it. Mental illness brings doubts, confusion and fear into a persons mind, over every aspect of their life. It makes them doubt their sanity, their ability, and question their own value. I never felt like I belonged, that there was something lacking in me, that I just didn’t deserve to be here. It destroys you from the inside, and it can turn a person into an empty shell, with no warning signs, or hints to the torture going on behind a person’s eyes.
Every day was torture. I doubted myself. I didn’t know if I was capable of anything. I felt I was a burden on everyone, and tried to shut myself away. I would try and hide everything about me, and I did so, meaning that no one really noticed that there was something not quite right with me.
Writing this blog opened a door to me. It allowed all the pain, the suffering, the hurt, the sadness, and the fear to become visible, and the shadow started to come into focus. It allowed people to see into a previously unknown world.
This world doesn’t just affect me. It affects thousands of people in Northern Ireland. There are thousands of other young people like me, who are suffering daily mental torture and anguish, and they don’t know how to deal with it. I want this to change. As I found out, people do care, people do want to know, there will always be people to talk to. No one ever needs to suffer the way I did, it is entirely preventable. Never feel alone in this world, because there is always someone there. Be that friends, family, or any others, there will always be someone willing to listen.
The next chapter.
What a difference a few months can make. In February 2012, I was a seventeen year old that had a severe confidence issue, struggling to make any sort of progress, and in real danger of just giving in completely and failing my examinations. Added to a deep insecurity about the problems that lay under the surface, and an increasingly negative mindset, it was starting to make a dangerous concoction, one that very easily could have led to disaster.
In March 2012, as the Easter Holidays were coming to a close, I decided one night to write about my experiences. I thought that writing it down and being able to show someone how I felt, may be of some benefit to others, and may help to make them understand the ways in which Autism can affect anyone’s life. When I started writing, I had no idea just what I was about to achieve. In the space of a few days, my story gave hundreds of people an insight into what had previously been a dark and very unknown disability. For many people, it was the first time they became aware that Autism can affect anyone’s life, and that it is not always obvious on the surface.
Fast forward a few months. It’s now September 2012, 6 months after I made the decision to first write this blog. I think now is an appropriate time to look at everything that has happened since then and to show just what its done for me.
I’ll start with something that has probably made the biggest difference for me. The year group that I grew up with, for seven years, reacted in a way I never had imagined. The amount of people that had been so shocked and surprised that I had suffered this way for so long, without ever giving the impression that something was wrong, genuinely astounded me. Their reaction and actions in the weeks and months since it was known, has meant so much to me, and it really did help to give me a great number of fond memories of my time at Carrickfergus Grammar School. The actions of a few in particular, who went far, far above and beyond anything I ever expected, really stand out for me. Thanks to those people, I now have some good memories of school that will last a lifetime for me. One of my favourite ever pictures is the one that someone took of all the balloons in the sky after they had been released by our year group. Many people wrote small messages on theirs. I left mine blank, as I couldn’t think of any words to describe just what I was feeling at that moment. The picture is very meaningful to me, as my balloon is in the middle of the year groups, and it looks to me like there was a place for me after all in that group. I just took a long time to find it.
The second thing that I would like to highlight since I wrote this blog, is the change it has had on me personally. My family have noticed a marked difference in my attitude and outlook on things, as well as my personality. I appear to be a lot more confident when talking to others, always smiling, and I think I have became a much better person because of it. I think my confidence has never been higher, I have improved hugely with tasks I used to struggle with, such as organizing things and communicating with others. I firmly believe that I would not have passed my exams if it was not for this increase in confidence I was given, and I would just like to say thank you to everyone who helped improve it. Every person who read the blog, every person who said hello to me as they walked by, every person that made any sort of contact with me, each and every little thing just added, little by little, to my confidence, giving me enough to pass my exams, so thank you, I wouldn’t be where I am today if it wasn’t for you.
This is a new start for me. I’ve finished secondary education, and i’m about to move onto third level education at University. Its a challenge that excites and scares me at the same time. For me, there will be a huge change in my surroundings. I will be in a new arena, facing some new challenges, and some old ones too. I know, however, that I am capable of overcoming those challenges, as I have proved to myself in the past. Its a huge step in my life, in the step to finally becoming one of the crowd, something that may seem very mundane and dull to others, but it is the one thing that I have strived to become for many years. I have always wanted to just be ‘another person’, with nothing out of the ordinary separating me from the others. I think this is my chance to finally do that.
Finally, I think I need to mention my family. From the day our lives were turned upside down upon my diagnosis of Aspergers Syndrome all those years ago, they have been a huge pillar of strength for me when I have struggled to go on. My mum and dad have been there for me every single step of the way, fighting in my corner to help get all the support and help I needed to get through secondary school, helping me when I was struggling to find a direction to go in my life, and always there for me if I needed anything at all in my life. And my sister, who has been one of the most amazing people I have ever known. She has had to cope with the fact that, although she has a big brother, she had to be the more sensible and strong sibling of the two. She had to help me with cooking, talking to others, even simple things like buying something in a shop when I was scared of talking to the shop assistant. Those small things, amongst the many many other things she always done for me without complaint, helped me so much as I gradually found the courage to do things for myself.
It really has changed my life. And I learnt the most valuable lesson anyone can ever learn; you are never on your own in this life, and you will never be left to deal with problems on your own.
This month, I went on holiday, to a country that is considered to have a lot of similarity to my own; the United States of America. However, when I got there, I very quickly found out that the language was one of the only similarities there was between the two.
The first challenge I faced was obvious to me from the second we drove over the bridge into Manhatten. Looking out the window, all I could see was a sea of people, everywhere. I have never seen so many people in my life, and I immediately thought ‘I haven’t a hope’. Arriving at the hotel, it wasn’t as busy as the initial areas we drove through, but when we left the hotel and went for a walk around Manhatten, I very quickly noticed that I was surrounded by people,and straight away, I panicked. I would sometimes get slightly seperated from my family, and I would immediately panic, as I looked in all directions to try and find them. This happened quite a lot, but didn’t get any easier as time went on. The crowds represented an absolutely huge challenge for me, and one which really tested me, but eventually, I got used to them, and although they did pose a few issues, they weren’t as daunting as they were at the start.
A second problem appeared when we went into a shop just off Times Square. In America, sales assistants usually come up and try to strike a conversation with you, and when this happened to me, it took me completely by surprise. I’m not very good at communicating with strangers at the best of times, but when it is in a new city, while I was trying to get used to the sheer volume of people, I panicked, and almost ran away to my parents, not leaving their side again that night.
After a few days, we left New York City, and went to Orlando, Florida, for two weeks, to have a more relaxing time. This didn’t exactly go to plan. Now, anyone who goes to Orlando will know all about the theme parks and the attractions within them. I like the big rollercoasters as much as anyone, but the big issue came when I got on a simulator. Now, for most people, these rides simulate certain scenarios and situations, with the movements and other effects making it feel like you are actually there. For me, I can’t tell the difference between reality and the simulator, so, for me, these simulators are absolutely terrifying for me.
One in particular gave me an extremely tough time. In Universal Studios’ Islands Of Adventure, the attraction of Harry Potter and the Forbidden Journey is currently the most popular attraction in Universal Studios, so I was expecting something pretty special. When I realised it was a simulator, I felt dread creep into me, as I tried to brace myself for what was coming. Within 10 seconds, a dragon leaped out of the screen, and in my attempt to get out of the way of what looked a dragon about to hit me, I pinned my head to the back of the seat so fast I made a huge lump in the back of my head. For the next 2 minutes, I sat in my seat, eyes wide open, absolutely terrified as a sucession of objects came flying at my head, each of which seemed very real to me, and Ikept attempting to move out of the way of them, resulting in several bruises on my face and arms due to my constant collisions with the metal safety restraint.
When the ride finally came to a stop, I felt physically sick, terrified, drained, and sad at the same time. While the rest of the group excitedly talked about the ride, they couldn’t help but notice I looked extremely white, as well as having several new bruises, they thought something had happened to me on the ride, until I had to explain that I had actually hurt myself by trying to dodge objects that didn’t exist. After this, I stayed off any more simulation rides, now having a huge and deep seated feeling of terror every time I have experienced one.
A CARRICKFERGUS teenager who has autism has written a blog about his condition - leading to a public apology on Facebook by a former bully. Ryan Hendry, who turned 18 last month, has been bravely writing online about his battle to cope with being autistic because he wants to raise awareness. In his blog he has spoken about his school years and his struggle to fit in after he was diagnosed with Asperger’s Syndrome. And he has been overwhelmed by the support he has received from his friends and family - including someone who apologised to him for bullying him in the past, having not been aware of what he was going through.
Carrickfergus Grammar School pupil Ryan told Sunday Life he was diagnosed four years ago and has the support of his dad Arty, mum Denise and 15-year-old sister Megan ever since. He said: “It’s a long process, it takes roughly about two years, but the professional diagnosis was made when I was about 13 or 14 years old, second to third year of school. “I have Asperger’s Syndrome, in the spectrum of this disorder it’s at the lower end of the scale. “It was my parents that first noticed. When I first went to secondary school it’s natural to be a bit different, but I just went completely backwards in everything, which made me go downhill and I thought ‘this is not normal’. “They took me to a doctor who said I may have autism, so I went through the whole diagnostic process and when they got about halfway through they said ‘we’re 100 per cent sure he has it but we have to wait for official confirmation until support’s put in’. “It was a mixture of educational ability and personailty changes, they saw how my standard of work had started to decline and within the classroom I was becoming very withdrawn and would refuse to speak to people or do simple things with groups. “And it got to the stage where it would be a fight to get me to go to school because I felt so bad about it and that’s when they really caught on there was something very wrong, because this shouldn’t have happened. “To me I thought it was something maybe everyone went through going to secondary school, but I just didn’t know how to cope with it so I was really afraid of even telling my mum and dad or even teachers for fear of being laughed at, saying ‘what do you mean you can’t speak to people, stop playing up’. “When they explained what it was and everything, even when it was diagnosed it wasn’t a very well-known condition. “And even doctors themselves said, it is very unpredictable in how each individual is affected, so no-one really knew how it would develop.” But after his diagnosis measures were put in place to help Ryan.
He explained: “Straight away, the second I was diagnosed, they started the procedure to get me a classroom assistant to make sure to keep me on track and someone to always focus completely on me to make sure everything was understood perfectly. “It would seem maybe that I suffered from shyness, but it was a terrifying fear of asking for anything, so having a classroom assistant solely focussed on me who would ask me if I understood, rather than me having to ask someone else, was a great deal. “I also have ADHD, so concentration was never good. So I would have extra time in an exam and seperate invigilation because I could not cope with a room full of 100 other people.”
Since taking up the mantle himself to promote awareness of autism through his blog, Ryan has been met with a superb response to his condition. He said: “Everything just seems to have changed. Everyone now understands it, whereas before they just thought ‘he’s just being strange’. “People knew something wasn’t quite right but they never knew what was wrong and the extent to which it went. “Yes the apology on Facebook, that was probably one of the most significant reactions. “I never really blamed them for it, because if any 12 or 13-year-old thinks something’s different they are going to react strangely to it. “But I thought to apologise very publicly when they had no need to, and this girl doesn’t go to my school any more so I would never see her any more, but the fact that she apologised in front of everyone and to freely admit that, I thought that was a very, very courageous thing to do. “Most people would ask, ‘autism, what’s that?’ And if you don’t understand something, it is hard to know what to do. “There are other people within the spectrum of autism at my school, so if that’s helped them as well as me that makes me feel much better. “That’s all I wanted to do really, make people more aware and more understanding.” *You can read Ryan’s blog at http://ryanhendry1994.tumblr.com/
I always knew it was going to be hard, to catch up with everyone else, but I never really appreciated just how big the task is, and it really has been a huge struggle to keep pace.
The past few weeks have been very much a mixed bag for me. The best part of it, from my point of view, is the feelings of being isolated from the world have, for the most part, went away completely. I still have some moments, where I feel like i’m on my own, but these moments happen to everyone I guess. I’m still a bit overhwhelmed by the whole situation, and I know i’ve struggled at times to adapt.
By far, one of the hardest aspects, has been friendships. Friendships are one of the main areas of a person’s life, and they are developed from a very early age. For me, its a very difficult and confusing process. I’ve found that, initially, its not as difficult as I had first feared, but, after that, i’m out of my depth. I’ve really struggled to keep it all together, and at times, I have came very close to throwing it all up in the air and withdrawing back into my shell again, but refrained due to the dark memories that reside inside that shell.
My problem stems from the fact that I don’t really know what i’m supposed to do. There is no one to give you guidance, or instruction. Your expected to know, ‘its natural’ they say. Not to me, it isn’t. Its all very unnatural to me, and I have found that I have made an incredible amount of mistakes along the way. I have caused some people to get incredibly frustrated with me, because it’s very hard for anyone, including myself, exactly what I can or can’t do. My disability is dynamic. There isn’t a set list of things I can or cannot do. Some days, I can talk to people and interact fine. Other days, I find it impossible. Its so unpredictable, I never really know how I will react to anything. This uncertainty is the root of many of the problems I face.
Because i’m never really sure of how I will appear to people, I tend to try and hide my true personality. I’m quite a shy person, I usually like to do things away from the spotlight, where there is no audience. I prefer this, because then no one see’s the mistakes I make, and the damage is only limited to myself. But when it comes to friendships, there is two parties involved, and now, my mistakes have an effect on other people. Its very hard to explain to people just how much you don’t understand friendships, and what they entail, without coming across as a bit strange, or slow, or even a bit useless. I’ll be the first to admit, that I’m not a person that has many talents or abilities, but I do put my heart into things, and sometimes, it does go wrong, and I do get hurt, too easily sometimes. I fully understand the people who get frustrated and angry with me, if the roles were reversed, I would react the same way they do. I have no comprehension of the subliminal parts of friendship. When someone says something, I take it literal, my brain is unable to process it any other way. The amount of times this has caused someone to get angry or annoyed at me is quite distressing for me, because it does make it difficult for me to build up a close friendship.
I must admit, this has saddened me a bit. I thought, a few months ago, i’d made a huge leap, and that i’d finally overcome the barriers of Autism. But, just a few months on, i’ve realised that i’ve only cleared the first hurdle, and I have so many more to get over. It has been a bit disheartening, to think you’ve came so far, but only to notice you’ve taken one step in what seems to be a never ending race.
Friendship; The first few steps.
Friendship is a two way relationship, in an ideal situation. Unfortunately for me, until very recently, I have never had a friendship like this. Most of my ‘friends’ were people who I ran after, spent money on and took advantage of my desperation to find friends, and I was never able to notice this until my parents pointed it out.
However, in the past few weeks, it has began to change. A number of people have came forward, giving something that i’ve never had before, someone to talk to, when things aren’t going well. Its been hard though. I don’t really know what’s expected of me as a friend, so I try and make everyone happy, which is extremely difficult to do. Its a learning curve for me, and I accept there will be a lot of things I will never understand, but all I want is to have a special friend, someone who I mean something to, and valued by, rather than the last resort, when no one else is there.
Autism Awareness Month is now over. Looking back, I said at the start, I wanted to make a change, and make a difference, and raise awareness for what is a relatively unknown disability. I feel I have done that, and I hope that I have changed people’s lives for the better. I have noticed a complete turnaround in my outlook on life. When I wrote the first installment of this blog, I felt isolated, alone and in fear of the whole world. Now, almost a month on, I feel a little bit more positive. I feel as if I have a place, that there just may be a place for me in this big world.
I am still unsure of what the future holds, and I am still scared of growing into adult life. No one knows how I am going to react to independent life, and if I will be able to cope or not. It really is a lottery, and hopefully I can get the winning ticket.
I’m going to start winding down the blog now. It has taken a huge emotional toll on me, as I have had to revisit the darkest periods of my life. It has been extremely testing, and I really think the time has come for me to look forwards and to finally leave behind my childhood, full of sadness, hurt and despair, and focus on my future. Thank you for your support, it really has changed my life forever, and I hope it has given you a small insight, into the life of a person with Autism. The next piece will be the final part, and it will sum up the whole experience, and will also detail the plans behind the charity I hope to set up, provisionally named ‘hold out a hand’.
I write this, a week on from the moment I first decided to tell the world my story of having Autism, a disability that, although it is becoming more and more common, the effects of Autism are very hard to determine, it is different for every person.
When I first wrote this blog, I expected the initial audience to be my family, and some others interested. But I have been simply overwhelmed with the reaction. People have read it in their thousands, I have literally been swamped with messages of support, sympathy, and surprise. To every person that has read this blog, you have made a difference, not just to me, but to every single person that has Autism. So, from the very bottom of my heart, thank you, so very much.
Writing this blog wasn’t easy for me. It was a trial of my nerves and emotions, as I dived into the darkest areas of my past, and excorcised some of the demons that I have had in my mind, some for years. The feelings of loneliness, of sadness and isolation, once a daily part of my life, haven’t been felt for at least a week now. I no longer feel like I am alone anymore. I think it has made me a better person, stronger, and more in tune with the world. Not once have I ever blamed someone else for my problems, they are not anyone’s fault, I just happened to develop this disability, which really has haunted me for many years, but I have learnt, that its not the end of the road for me, its just the beginning.
I have previously mentioned my own very poor experience of school, and I think I may have some changes to make on that front. For a start, the system that was put in place for me, as a support structure, was second to none, and it has to get a large amount of credit for my exam results, and I honestly don’t think I would be here today without it. Another thing I owe gratitude to, is the school itself. Nothing was ever too much to ask, or too much to do, the system was excellent, but there are some things the system can’t account for, such as what happens outside the classroom. It has a remit to ensure my academic progress goes as well as possible, not to integrate me socially into society.
On Tuesday morning, I was presented with a shield from my school, which meant a great deal to me personally. But what made it much more special was the manner in which it was awarded to me. I very quickly found out, that two pupils went to the headmaster, to make him aware of my blog, and urged him to make some sort of gesture to show just how much my story had touched the hearts of everyone who had read it. These two people were Katrina Best, and Katie Entwistle. They had no need, or obligation, to do this, but they did, and I cannot thank them enough, just for showing this to me.
What’s next for me? Who knows. I honestly believe, that the last seven days, have changed my life, forever. It has given me a renewed desire to achieve high, to push myself to the extreme limit, and also to repay everyone’s hope in me. They haven’t given up on me, why should I give up on them? I have a renewed faith in society, the feelings of being lost and abandoned are a distant memory. They have been replaced with a sense of belonging, and hope, hope that I can finally find a place of happiness, something that has eluded me for quite some time. In the long-term, I plan to open my own Autism charity, which will focus on educating teenagers on the effects of Autism. I never want another person to go through what I did, and I firmly believe, that educating young people, will help to avoid this. For a long time, I considered myself an outcast, someone who will never fit in. Not anymore. When I said last week, that I will slip away unnoticed on my final day, I would like to change that. I want to walk out the door, as part of the group who have went through secondary school together, and I really hope this is possible. Maybe, just maybe, there is a place for me after all.
Chaos, confusion and Coldplay.
Many people often have one song that they believe tells the story of their life. I am one of those people. The song that I believe tells my story, is written by Coldplay. It is called ‘The Scientist’. In particular, the line ‘nobody said it was easy, no one ever said it would be this hard’ is the one that has stuck in my head. When I was diagnosed with Autism, I knew a long and daunting road lay ahead, but never in my wildest dreams, did I imagine that the road would take me to the depths of despair, and to the lowest I have ever felt in my life. However, I am starting to slowly believe, that this road is beginning to take an upturn.
When I was first diagnosed with Autism, my world was turned upside down, my whole family’s world was shook to the very core. It forced us to completely change the way we acted as a family. Things would have to be organised around my routine, to much awkwardness.
I really did struggle to come to terms with this sudden upheaval. 2007 was the fateful year, when my family was informed I had the disability. It shook us, badly. The future looked very bleak for me. The glaring possiblities were grim. There was, and still is, the prospect of never being able to live on my own, or with any degree of independence, hanging over me like a dark grey cloud. University is going to be one of the biggest challenges of my life. The enormous change in routime will be the biggest problem. For the first two years of my secondary school life, melt-downs were a daily occurence, and I struggled to complete a single day of school, between constant break downs and just general hopelessness. I could be set off at the slightest provacation, I could react viciously to any slight touch, I spiralled out of control.
The spiral gradually ground to a halt, but so far, the damage has not been repaired, and my deepest darkest fear, is the stupid and idiotic actions of my teenage years, will come back to haunt me. I alienated a vast proportion of my age group, I didn’t do myself any favours, and I fear I have driven a wedge between me and them that is immovable.
Friendship, and my search for it.
One of the main effects of Autism is an impairment on social skills and interaction with others. Through my own experience, I have found this effect of Autism the most distressing and challenging of them all. Social interaction and activity is supposed to be a given, something that occurs on an everyday basis.
This one aspect of my disability is the one that I have struggled the most to come to terms with. The absence of a social side of my life has had a huge effect on me, and has been a very distressing and uncomfortable area for me. It is also the most personal aspect of Autism. Think of the memories you have. Nights out. Nights in. Parties. Schooldays. Holidays. Concerts. Now, how many of those memories are shared with others, as part of a group? Many people never notice just how much of their life is shaped by the people they spend it with. Would those memorable days and nights be as good if they weren’t shared by others?
This has always been a source of pain and sadness for me. An absence of friendship is nothing new to me, but as I have got older, I have became more aware just how much my teenage years have suffered because of it. Think of the friends you shared those memories with. How long have you known them for? In many cases, this will be a friendship that has built up over the years. This is where the difficulty begins for me. I don’t know where to start. In face-to-face conversation, I can seem very strange. I am unable to make eye contact, I struggle with normal everyday conversation. This can seem very rude, and it can alienate many people, and I am very aware of this. However, this is only the beginning of the issue.
Autistic people have a routine, that should not be disrupted, with devastating effect to an individuals day if this happens. I am no different. If my routine is suddenly changed without warning, I will have what is considered a ‘melt-down’. What this means, is that my brain is unable to cope with the overload, and essentially, I will not be able to function at all for the rest of the day. As you can guess, this can be a major issue, especially when it can have huge consequences. In June 2011, a small routine change on the morning of an exam, triggered a meltdown. This meant that I went into the exam with my brain overloaded, which meant that I was forced to walk out of the exam after only 15 minutes, which obviously had a detrimental effect on my exam mark. On a lighter note, I have been able to take small steps to reducing the effect of a melt-down, and have been able to occaisionally overcome a change in routine, although it is still very much a work in progress.
This routine is not just a simple schedule, like a school timetable. It is almost a map, which, if I am unable to follow, I become lost. For example, in the school library, if I am unable to use one specific computer, a meltdown can be triggered. This affects my ability to forge friendships due to the complexity of my routine. Such small problems may seem irrelevant to most other people, and I have gained a small sense of perspective on the situation. I do not place any blame on the people who are confused by this, however. I don’t even understand how such a relatively small event can trigger such a huge reaction, and it is completely out of my control as to how the reaction will manifest itself.
I hold a great fear of rejection, and it has caused me to become very withdrawn in recent years. For a long time, my default reaction to any situation that would mean working with others, or any type of social interaction, had me withdrawing into a shell, as I didn’t know what to do. For me, even saying ‘Hello’ to someone if I walk past someone I know is a huge challenge, so you can imagine just how difficult having to work as part of a group is for me! I would like to think I have improved on my ability to work as part of a group, but it is still a daunting task for me, along with speaking in front of others, something that causes me abject terror. I have been able to improve these skills slightly through practice. My problem is being able to carry these interactions on to something outside of what is required. For me, the only physical interaction I have with people my own age, is those six hours of school, five days a week. Once the doors open at 3:30 pm on a Friday, as everyone leaves for the weekend and talks about the plans to see each other that night, or over the weekend, I get a bit sad, and almost every Friday, I walk home thinking about what it must be like to be part of the group. The summer months in particular are a scary time for me. I have almost no interaction with anyone in my own age group for two months, which really does intensify the feeling of isolation that I have previously alluded to.
The way I see it, I am 17 years old. I have very rarely had any sort of contact with anyone in my school. How do I even begin to start to make some sort of conversation with them? All I can really talk about is school, which doesn’t really lead to a good conversation. I would usually ask how their weekend was, or if they have anything nice planned. The response I fear, above any other, is ‘what about you?’ I always have the same answer ‘nothing, really’, and I would imagine ig must strike them as strange that I never seem to have any sort of activity outside of school. Its no one’s fault, they are just trying to be kind, and I guess its quite a polite thing to ask the question, but I just don’t like the answer I have to give them back.
I want friends, I want to be able to have as good a life as anyone else, I really want to be able to try and be part of the group, but my Autism is like a glass box I have been placed into. I can see them, they can see me, but there is a barrier inbetween me and them, it isn’t visible, and you have to look very closely to see it, but it seems inpenetrable from the inside, and I don’t really know how people see it from the outside.
To sign off, I would like to say thank you, to the huge response I have received from when I have started writing this blog. I have received email’s from people in places as far away as New Zealand and the USA, telling me about their own experiences and telling me about the ways they have tried to combat it. I have also received messages of encouragement and support from many people that I never realised had a real notice of me, and each and every text, email and message I have received is a small confidence boost that maybe there is hope for me yet. So, thank you, from the very bottom of my heart.
Loneliness. Its not a nice thing to experience, the dark, scary feeling of being alone, and that you have to go it alone. Loneliness is a concept I am very familiar with, and one of my biggest fears in life is that I may very well be lonely for the rest of my life.
At my age, most teenagers have a close group of friends, that they will usually keep for the rest of their lives. They leave school with a metaphorical treasure chest of memories, and have went through their school years as part of a big group. My experience is somewhat different. When I walk out of school in just over a month, for the final time, I won’t be leaving with a group of friends, with memories friendships forged and bonds created between people. I will walk away alone, with the memories of the bullying, isolation and pain etched into my brain for the rest of my life. ‘Its the best days of your life’, they said. For me, it was hell, and it still is. When I look back, perhaps my feelings will have changed.
I never really had the chance to develop any type of friendship in school. People gave me a wide berth, I was different, and they thought it was weird, and it was very difficult for me to understand this. On our last day of school in Year 12, it was customary for all the pupils that were leaving to go on study leave to sign each others shirts. Many people had 30, 40, perhaps more, signatures on their shirts. My shirt had about three or four, and it had some of the cruel names I had been called on it, which I never understood. There was a barbeque organised by the school for us, but I decided to slip away, unnoticed, as I knew, I wouldn’t really be wanted, or needed there.
In Year 14, there was, of course, the school formal. Now, this is usually attended by everyone in the Year, and is a chance for everyone to have a good time with the people they have grown up with, and went through so much together. I was never even going to entertain the thought of going, as I doubt anyone would have been willing to even sit at the same table as me, let alone actually talk to me. When I seen the photos being uploaded to Facebook the next day, I felt really down, as I wished, more than anything else, that I could have been able to be a part of it, but I never was able to