Making Sense (1 year since being diagnosed with Aspergers)

The Beginning at first it?s like an immense wave of relief as every think begins to fall into place and make sense? looking back I revisit the painful memories of the past that can now be explained. Then a urgent need to over explain to everyone I may of impacted by my autism, I want them to understand, but where do you begin!

How do you explain a life of horrendous, hideous, mishaps that you would like to erase, and does it really matter now I am on the verge of self discovery, maybe at last I can truly belong.

What will you all think of me now, I know I am not cold, I do care and I am not totally self-absorbed as the ?DSM-IV? criteria may imply, if any think I care and worry far too much. Is my anxiety, obsessive compulsive behavior due to you trying to change me from birth, how much of my life have I lived as another person, acting the part to meet your expectations.

Do I medicate myself as has been suggested and suffer all the side effects, haven?t I suffered enough. In trying to make sense I will maybe put some balance back into my life, and find real peace and sleep instead of lying awake many a night and not knowing why there was a deep sadness inside, at times an undesirable pain, emptiness. It?s like looking for answers in the dark, answers that were not there until now.

While I do not wish to give myself a label, it?s some think I cannot avoid. I can no longer pretend to be like you, and I have always known I was different anyway. To not acknowledge who I now know I am would only cause further pain for you and me. It?s not the label that stigmatizes us it?s our differences. As I begin to make sense I will share and hopefully help you understand.

Making Sense this section I have just begun, as I piece together the broken memories of my past, will add some of them here... compare comparables of what may have been, make sense of what has been and while untangling, will merge the broken parts to refit, in the hope that with deeper understanding, change and growth may occur..

I have been thinking a lot about my teens and early adulthood, the effects of my upbringing and not knowing I was on the Autism Spectrum... I guess, whatever my past, and what happen then was then and I would not be me now without these experiences, but was its my insecurities that lead me on my life journey...

Of course, there never is any going back we all move on. I guess I grew up with good, bad, painful.. - the usual mix for any other young adult you could say , but so much of mine has been extreme, difference, just not like everyone else. Was it that I was ashamed, knew I could achieve much more but never did, but I have felt the need to keeps parts a secret, who knows what will happen if I go back and lift the lid!

Some may stay there forever... some I may share... and revisiting some of these experiences with you, maybe will help me understand who I really am today...

Melting%20Ice%20copy

Will the layers melt as I discover

the mysteries of my past!

What really got me thinking was watching a film last night and I could see parallels with my own life, and understood why these people felt like outsiders, just as I had for far too long...

The film was a war film and I could really see the similarities with soldiers returning from war and feeling at odds with the world. Others often not really seeing, or wanting to see things that they find hard to talk about, let alone really understand. Should parts of our unavoidable life which could be viewed wrongly be kept as unspoken words, or do we release what we may not understand ourselves. Maybe this is meant only for me and my growth, where will it lead I ask.

My situation may be different to others on the autism spectrum; we are all different anyway so still feel what I have to say is relevant. I have seen and dealt with things as a child, that some adults would find hard to understand, I know I am not alone in this. Having thoughts which are yours alone, do you keep those secrets forever and how and who do you share with, not wanting to effect other lives incorrectly?.

But do feel at times like those soldiers who return as a lost empty shell, who no longer feel they fit and find most 'norm' NTs find us hard to truly relate. OK, you could say this may be a little extreme, but then soldiers at war stories are all different from mild to extreme, but still there world is often separate from the real one, in some respects I feel this is the same often for those on the autism spectrum, still far too many lost lonely souls.. .

Where it can often seem like there is a blank screen between us and the narrow-mindedness of a lot of people, preferring to keep at arm?s length what they do not understand. I am trying to get just some of you to think outside your safe boundaries, the way we view things now - may change in the future, hopefully. And just maybe by discussing things in a different way, can help others see from another point of view.

I know there are people who feel I should get on with my life, stop making a fuss. But this is my life, well new one since being diagnosed last year. So many things have changed since being diagnosed, at first it did feel like that solider returning from war, with it came a grieving time, dark grey sadden like a lost soul. But now, I no longer want to stay in the shadows, and like a caged bird being set free for the first time, I want to explore?

I may have been born different and misunderstood from birth,
but I know there is a place for me, somewhere in this universe.

Where do you start when its feels like you have been transformed from an NT into an Aspie. Aspergers syndrome less than 1 year ago I had never even heard of, and had no idea there was a whole range of autistic disorders. It?s difficult to detect and even harder to explain, especially if as the majority see it you look like a ?normal? person, and people do expect you to act like a normal person.

On the outside, I look perfectly normal. On the inside at times total confusion and turmoil, and that was the problem ?it? was invisible, it?s a part of me and always will be. Being diagnosed had enabled me to understand myself a whole lot more, it also explains some of my differences growing up and is allowing me to at last, to just be who I always should have been!

By making sense of me, maybe you can start to see things from my point of view. I don't need to be pitied. I don't need anyone's sympathy. I just need people to understand why I act the way I do at times, and to accept me for the way I am.

I cannot help but wonder what if I had known and understood, was accepted and embraced from birth. Instead of struggling through life, on the edge. Feeling I had to continually explain, justify for not being the same, over analyzing what I never knew. I grow up wanting attention for all the wrong reasons, a need to fulfill an empty void, a need that was never met, I was all the broken pieces which never fitted.

How beautiful it is to at last be able to snuggle up and allow myself passing moments to shut out the world as I once knew it, and from time to time, dream of a day when I no longer feel the need to think about how I should act, but just am.

Please do not look at me: They were my thoughts as a child, every time I meet a new person panic would set in, as another person looked upon me I would find it truly unbearable, feel trapped. Have a huge need to run and hide from their stare, but instead I would stand there like a quivering rack until the ordeal was over.

I have always found eye contact intense and uncomfortable especially as a child. I forced myself to look as I grow up. It has become easier over the years, but not really easy or natural. Before being diagnosed last year (July 2007) I thought I could, but have been thinking about this lately and to be honest it?s really just an uncomfortable stare. So I still try not to look directly at strangers, but may stare at you once feel I can. I may never know what it?s like to stare deeply into another?s eyes; I wonder what I would find!

Relationships did I search for all the wrong things, my emotions seem to merge with a need for affection and approval. I never really fitted into the usual couple?s things. It was like a game, I would chase, catch and then push away, overwhelmed by what others expected from me.

I seem to be attached to all the wrong people, wanting what I could not understand, attaching myself like a serpent to whoever took the bait. Wanting so much to be accepted, a need to feed my insecurities, obsessive behavior. Of course my desperate attempts to get it so right, meant I was totally blinded from reality.

But wanting so much to be truly in love, in fact my biggest problem was I would almost latch onto anyone who showed affection and become totally obsessed with wanting to be in love, for all the wrong reasons of course. Emotionally we can be awkward and can find connecting emotionally quite hard, as the way others expect us to act, just seems wrong.

For instance some of us can have regular sex, without emotional connection and others will become obsessed at being in love with everyone they attach themselves too. One minute we can seem loving, the next needing our own space and the last thing we want is the touchy-feely bit. My husband use to think when I pushed him away it was all about him, but now he knows I just need a bit of space. Sensory overload I like to call it, when I just need some down time to myself.

For years this was a huge problem for me and as a young adult the consequences of not knowing can be soul destroying, in the past people have told me there was something wrong with me, this I never understood. How could I when I did not know I was any different from you, I did not understand myself so how could anyone else!

The real pain comes from the knots my mind goes through just thinking about giving and receiving affection. I seem to over analyze everything then the moment has gone, it does not seem natural for me to show my real feelings, well in the way I feel I should. I do wonder at times if my expectations are too high, and am I too focused to be properly receptive.

I do have intense feelings of happiness and even more intense feelings of sadness. The smallest triggers can produce huge emotional responses in me. So when something good happens I may seem to be over-reacting or overly happy, and the opposite when I am sad even though tend to keep my sad moments to myself, finding hard to share.

Friendships and relationships are great, if only I could put on hold from time to time, as for others they often misinterpret my thoughts, I do not seem to make sense. They want to judge without really knowing me, in their eyes they just seem to see my shell, never the real person inside.

One moment I am full of joy and the next withdrawn like an injured animal, just want to shut down for a while. I guess you could say no real consistency, bouncing from one extreme to the next. From the heart and soul of the party to the wallflower, when the screen comes down and the blank stare returns!

It can be hard making friends, when one day I will welcome you with open arms and the next hid behind the door, wanting to stay in the shadows, and pretending I no longer exists. Well not for you, but I do exist on my terms, as it?s like I have to retreat and recharge, it can be hard playing the part for all of you. I allow for your differences and try so hard to fit, please allow for mine from time to time.

Some days I just feel the need to speak, and speak and speak until all my thoughts are clear and the next the shutters come down. I no longer have the need, so just escape into my safe cocoon, but I will always be back.

Maybe I do not cry as you may expect me to, does not mean I have no emotions. I may seem like a jumbled vortex mix at times and an empty void the next. My emotions seem to be none existence one moment, but then can build to overload point within seconds. I do wonder at times if this is because I do not express them like you. I can very quickly move into an intense emotion and this can happen with virtually a zero trigger.

But remember when I may seem distant, locked away from you. Do not give up on me, I may still need you soon.

.Quote: 'Having to navigate a world that is, on all levels, is built for the abilities and deficits of people who are not built remotely like me.'- Amanda Braggs

Am I really that different, I do like to think outside the box, push boundaries and like to get things right, over analyze, think too much about little details, I can get so carried away about the tiniest things, which you may not of even of noticed.

Over active imagination, maybe I do see things different from you. When you see rain you may think of gray and wet, I see within the smallest rain drop another small world, which changes shape and form as it moves from light to shadow, that moment in time which will never be replaced. I often think like this as I walk and wonder and notice beauty in things that you may not see.

When you talk about the price of bread and milk, maybe my mind does wander to another place. Am I to blunt at times or just very honest, is it that my feelings and thoughts are not what is socially acceptable to who I ask myself, do I talk too much about things in detail that do not interest you. I can become totally preoccupied with a particular subject, intense focus. You may think this is obsessive, but it's what drives me.

I have always had bad coordination problems and I am extremely clumsy, near impossible to ride a bike, lack of balance, confidence I am not sure. Glass keep clear, I am that the original bull in the china shop. A lot of this is to do with one of my many associated conditions Dyspraxia. I have heard that a lot of people on the autism spectrum have Dyspraxia and early intervention can really help.

I have heard autism described in many terms the jelly bean mix, the jumbled jigsaw , even a fruit salad! To me It?s like a web, autism is at the centre and all the associated conditions, disorders surround it. Quite often Autism gets blamed for every think, when in fact it?s the associated condition we need help with, which any one could have not on the autism spectrum. Autism to me just means differently minded, unfortunately still very misunderstood.

Driving is a thing, like many others I find so hard. To pass it took me just 3 months, as I can do most things I put my mind to. But find it near impossible to be able to steer a car and drive, it?s the having to concentrate, judge distance and use both hands, feet all together and remember to carry out a sequence of tasks all at the same time. There are many adults on the autism spectrum who choose not to drive, I know I can, have and cannot help but wonder at times why I choose not to - feel partly because it drains me to concentrate that hard..

I am really not so good with people fussing over me, will just back away. Tend to prefer to just get on with things, and hate to be interrupted when in mid thought. I like my routines and have difficulties with change, that?s why quite often we like to be in control of what we do. Others may feel we do not listen, we more than listen and often are looking, seeing the bigger picture when your still focusing on one point. We have our own little safety devices, which may not make sense to you, but remember there may be another way apart from your own.

I may be very sensitive sometimes, over react in your eyes, attach myself emotionally to the strangest things. But I am very loyal, even if you may not think so. I do not mean to push you away, it?s just I am my own free spirit and will never be like the main flock, always just on the outside. If we do not reach out, its not because we do not need help, we do not know or feel the need to ask.

My world is enriched with visions and thoughts, and can be a wonderful place, but also a lonely one, that?s why I want to share some of it with you. I no longer feel the need to whisper, but truly be heard?

To speak about the unspoken: Why is it that so many of us on the autism spectrum prefer to retreat from reality at times? Is it because so many of you not on the autism spectrum seem not understand us and therefore, do not allow for our differences, so we retreat to where it?s safe, time out from trying to act the part and please everyone else continually.

I have noticed that since being diagnosed myself, the depressive side of me seems to of gone, maybe it?s the fact that I now understand myself and symptoms and can accept and allow for them. But then again I have become more who I feel I am and to a point backed away from society in general, so not having to deal with to continually acting to fit in. I still need my time out, but understand that now, and maybe felt in the past I was depressed, when in fact I just misunderstand me.

I cannot help wonder as keep finding quite often within families on the autism spectrum there often seems to be many associated others disorders such as mood disorders OCD, anxiety, depression, bipolar, schizophrenia (the word we should not mention!) to me the more your criticized for being different, the more likely you are to back away from society and into your own thoughts and world. Is there a line we are pushed over, and then labeled once again!

Try and imagine being me for a while and continually having others trying to change you, get you to conform to their ways. In more extreme cases individuals become isolated and misunderstood and therefore totally retreat into their own space. Of course I am not a professional, but just trying to get you to see things from another point of view. Would it be right for me to treat my NT child as a aspie from birth, NO but so many treat Aspie children as NTs!

I want to start discussing this issue, get you to rethink and look at the way you view others, bring the unspoken out into the open, because I know only too well if we do not speak about the consequences especially within young adults who are still trying to figure out who they are, this can often lead to real pain and even suicide. It can be far to easy for us to feel distant from reality as you know it, as often others have continually tried to cram us into a box and of course we will never fit!

I truly feel quite often it?s vital for children's differences to be embraced at an early age and understood, otherwise they may retreat further into their own worlds and other complications may occur, remember do not leave your child locked in their own little world or put them into situations which are not natural to them. It's important to try and see things through their eyes from time to time, step outside of your own safe boundaries and embrace the diversities of life.

For some reason many over stigmatize people with Autism, bipolar, Schizophrenia things they do not understand themselves... but we all need to remember having one of these disorders does not automatically make someone a bad person. We all need to look beyond the labels, as we can never be sure any label is 100% correct. Understanding and embracing these differences really does change lives..

'What is madness but nobility of soul at odds with circumstance?'
? Theodore Roethke (1908 - 1963) -

Thoughts: Thinking back I grew up not understanding so many things, and then went on to become a mother in my heart I knew I was different as were my children. But deep down whatever anyone said to me, ever had many people try and give me parenting advice, just do this and your child will be ok!. But, I knew I always knew to follow my instinct and not listen to them.

As parents we somehow know if we need to protect our children from the rest of the world, I could of made them suffer and forced them to change like so many parents unintentionally do, not blaming them, society and other pressures cause this. Please listen to your heart because you will deep down know if your child is different, do not make them suffer for appearance sake!

It?s never easy for us to change our way of thinking, when it?s already taken a life time to get to the point we are at! What I am trying to say is the unknown can be scary and it?s all too easy to ignore invisible disorders, pretend they are not there. But just maybe, if we all changed our perception a little on how we all act and should be, maybe there would be less lonely people, feeling excluded from society.

But as much as we feel locked out from others, as long as you continue to try and change and get us to conform, you will never truly understand us. I cannot be happy being you and I do not except you to act like me. We need to stop only seeing a stereotype of 'normality' for our children, and stop presuming our children, other children etc. are all the same. They are NOT, we are born as unique individuals, but sometimes some of us forget that.

On my journey to finding who I truly am, discovering Aspergers etc... I have had to relook at a lot of things... reinvent myself really, come to terms with what makes me happy may not be the same for others, and the realization that a lot of my pain and sadness has been caused by not understanding myself, let alone others understanding me. I have now learned to be more tolerable of the way other people are, and now know the only way we can all grow and move forward, is not just to listen, but really listen to each other.

Growing up and not fitting in, I still developed ways of using my intelligence to find ways to appear ?normal?, but no surprise I was never understood. Aspergers Syndrome did not make it into the Diagnostic and Statistical Manual (DSM-iv) until 1994. So I cannot help but wonder had things been different, any number of my family members might have been diagnosed with specific disorders. This unknown knowledge has probably gone back many generations within my family and who knows what damage and pain it may have caused.

People like to explain the unexplained as just a little eccentric / odd, even crazy. But Autistic people always know they are different, just suffer deeply from not knowing why, so that?s why I feel it?s wrong not to get diagnosed, as others will label you anyway and those labels may be a lot worse!

I really do not know all the answers, but maybe together we can all help make a little difference and unlock apart of the mysteries of the autism world, but this can only happen if we all keep an open mind. I tried so hard to figure things out for many years, and just hit a blank wall, realization was because there is far too little understanding and awareness of our real differences, if you think you know read some more.

Step forward because if we all stay silence, others will decide for us. The next stage of autism I find an exciting one, after years of not understanding myself and still not really totally understanding, but I can see change and I am hopefully for the next generation and that makes me smile to feel my child may be allowed to just be.

We need to learn to understand our differences, enjoy our solitude and embrace who we are. Maybe my reality is different from others, but I know my world can be a wonderful place, if only I was allowed!

Believe in yourself, we are who we are - as it can feel like an endless task trying to be someone else!

Just like Dawn Prince-Hughes, Ph.D. who wrote songs of the Gorilla Nation and shared her journey through Autism ?how I emerged from the darkness of it into the beauty of it?. If have not already, we should take that journey and discover who we really are. As what other choice do we have, continue to play the part and act out who we feel we should be!

Often we are misunderstood from birth, instead of being embraced for the unique individuals we are, made to conform and change. Along the way, so many of us have been lost and now lead lonely, isolated lives on the edge of society, like driftwood afloat.

Society generally embraces different people if in the spotlight, and the ones that do make it usually have great support and belief in themselves. The real problem with society in general is people avoid what they do not understand, and always to ready to criticize - often leading people on the autism spectrum feeling inadequate and lacking in confidence..

Of course, not really any one?s fault, and not trying to pass the blame.. No one still truly understands why some of us are just born so different from ?neuro-typical? people.

It could take years to find all the lost souls, especially the ones who have already suffered so much, miss diagnosed and grow up among confused, chaotic, chaos, and still feel at odds in this world. Some of us have acquired all sorts of other diagnosis and mental disorders along the way.

I feel it?s about time to stand up and be heard, to allow and believe in ourselves. As far too long the large Autism organizations which are often mainly run by ?neuro-typical? people still feel they know us and what is better for us, more than we do ourselves. I feel we have been excluded for far too long, and no decision should be more without us, and unless more of us speak out, that?s if the media allows, things will never change.

We will all always be autistic and it will always be a part of who we are. However, we change or seem like you as we find coping strategies to help those around us feel at ease. But for those of you that believe you can change us, cure us - you are wrong. It would be like to stop a bird from flying, they would never really be content.. We need to be free to be ourselves, our genes, traits are apart of who we are and we will all continue to evolve anyway.

We all need to start to think differently, in the way we view autism as no one really knows all the answers yet: Quote: ?Should autism be treated? Yes, says Baggs, it should be treated with respect. 'People aren't interested in us functioning with the brains we have,' she says, because autism is considered to be outside the range of normal variability. 'I don't fit the stereotype of autism. But who does?' she asks, hammering especially hard on the keyboard. 'The definition of autism is so fluid and changing every few years.' What's exciting, she says, is that Mottron and other scientists have 'found universal strengths where others usually look for universal deficits.' Neuro-cognitive science, she says, is finally catching up to what she and many other adults with autism have been saying all along...?- Amanda Baggs

But the lack of a single explanation for autism, and the growing understanding that its component symptoms are not necessarily linked, to me indicates we need to continue to search for answers and not just presume this is how it is. Hopefully my journey can help us all understand a little bit more, but like everyone I am still looking for my own answers.

It had been said that: Quote: ?perhaps everyone is a little autistic. Those we classify as such may simply have an extreme manifestation of traits that are present, to a greater or lesser extent, in us all.?- M Henderson

My reply to this is while I find this an interesting concept, I see Autism at the centre of many associated conditions ADHD, Dyslexia, OCD, Bipolar..... but at present it?s a little like breaking open a pi?ata and depending on which direction you go, it seems is what you get diagnosed with and what help you get. that?s if you can find any good professional help in the first place!

But thinking about it I feel even though there may be many diverse people on and off the autism spectrum, from my experience I truly feel there are in fact just a whole group of people who are just different, I have always know I was not the same as everyone else, like many people on the Autism spectrum. I would also like to add there are many more undiagnosed people who are on the autism spectrum, just do not know yet!.

The thing that is still missing is real answers!

I know I am not the only person trying to make sense of autism, there is an overload of information from so many sources, research, scientific studies, professional and non professional opinion, autism community and general information pulled in from various resources?.

At times it can feel like more non autistic people know how I should be than myself. I guess I understand the professional world and what others are trying to say, do. I do realize that we all have to look at the wider picture to truly understand. While I can see why its suggested things like CBT can be a tool and if it helps that?s great, but others do have to remember we are all different individuals, not text book ideas...

It does concern me that often inexperience professionals try and diagnose and 'make good' from a book, with no real understanding or experience of real autistic people. After all what is CBT, to control when and how we should be, the biggest trigger as I see it is lack of being understood!

Emotions we do have them, but its allowing others to understand that they may never be the same, but excepting how they differ... just today I watch an exclusive on the China Quake, if I could of walked through my tv to help I would of, I sat and cried, I really felt there pain, small children reaching out for help.

But it also got me thinking, quite often people on the autism spectrum are the ones doing, we may not express ourselves emotionally verbally but we feel and often show others by doing things... so if not on the autism spectrum people have to learn also to see our emotions in another way. I do not believe teaching us to conform to an 'neuro typical' way helps anyone, I cannot be what I am not, it would just be false!