Messages for 2010

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August : Action often means a reaction, life in a way a balancing act, if we tip the scales to far one way, often consequences. But at times we need to take risk, to seek and find or we can simply venture on. Its like being in the dark or truly seeing and discovering a continuous within time as now only a moment, that moves past, as does life. We have choices to stay static or truly live and recreate what was!

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July : Each day just a day, yesterday was yesterday and tomorrow still to come.... days come and go, whatever we do, where ever we are. The morning turns to day and the day turns tonight. We can lets the days pass us by or fill them with delight. We can plan ahead, but we never know, so maybe it's better just to enjoy each day and hope if bad the next is good and if good hope it continues.

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June : Spectrum-wise we are not so different and we certainly are not cloned, we grow, adapt and change like all humans do. Neurologically we are wired maybe differently from you. We are no better, we are no worst, and we have different strengths and weaknesses and are as varied as you. So remember do not judge unless you understand, as I suffer no less than you. Except by society sometimes, because at times it seems to me some lack the understanding and/or are not always willing or able to grasp, the diversity of life.

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People no two are alike, as varied as the clouds, they come and go into our lives, they enrich, embrace, everlasting friends. Some try to destroy, distasteful, dislike so we move on. As with the world around us, everything continually changes, as does time. At times I wonder reason for each encounter I make, but no connection a mistake, as we should always learn, grow and embrace life as is. And finding  the strength to do what we feel is right, not what others think we should do.

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As the rhythm of life takes us places, at times we dare not go. The highs, the low no one knows. Today I feel like I could paint the moon, and while I want to jump for joy, fly like a rainbow filled bubble. I simply smile to myself and am content at home, as the world outside, will probably moan, what's wrong with her, she acts like a child. But what do I care, as long as they leave me alone. Because sometimes the pretence of reality, I could do without and a cave in the hills, often seems more appealing than the concrete cage.

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But I also know it of course takes all sorts to create a life many simple do not enjoy on or off the spectrum. So I try not to think of the what if's, because what is right now will probably not change in my life time, but feel if we all did a little, there may be hope for the next generation. As what never seems possible right now, often is in the future and those that dare speak out, may help change the course of what happens tomorrow, we can conform and stay stuck in the now or look for answers, because whatever happens we will progress.

 

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Sometimes I cannot help but wonder, when I speak

or type, do you fully understand. Can you translate

my thoughts, within your own mind. We cannot read

each other, we can only simply guess, as here a cyber

space existence, so how can you know me best. I sense

as well as see and communicate often like passing

trains in the silent night. As wired differently,

neurologically, mentally a paradox of you! (May 2010)

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Add your comment(s) at bottom of web page (plus 2009 thoughts below)

My wish for 2010 for AUTISM (copy and paste and pass on): LET – our Lives,

our Existence, our Terms. We can all learn from each other and I feel we should

celebrate diversity and difference not stress over it, with understanding comes

awareness, comes acceptance and then maybe we will simply all be allowed.

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Action creates reaction, each of us have choices to help

make a difference or not, we can make the world a bette

r place, or destroy and destruct. We can consume and

gather as much as we can, or we can fulfill our needs,

share and give to those more in need. We can put down

others to make ourselves feel good, or we can embrace

each and everyone, as we all should!   (May 2010)

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Often the cause of alienation, feeling on the edge of society is stigma.  All just

words: mental health, bipolar, aspergers, autistic and my other complexities,

but I am none of them my name is Alyson and I feel we all need to say these

words more and more, because while many whisper the words it does not help,

time for others to realize they are simply words and we are real people. (may 2010)

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MAY: Below the surface of the water, somehow it’s always more clam, a sanctuary. However much the ocean rages and fights above, as the waves crash and explode, unexplained indifferences, at times a chaotic contrast that does not always make sense, maybe the reason some hideaway form a world that does not always seem to let everyone in, why fight a tide, when we can swim.!

 

I am a combination of many labels, but I am none of them but me. Labels help us to understand certain factors, reasons and whys... but often also designed for the professionals to figure and not sure any of them can quite cram me into any of their boxes. My window into this world as unique as yours,. I perceive it in away how others interpret it, I am feed information almost like a computer and at times hard to know what is right or wrong. But subconsciously do we really listen to ourselves enough, are we over influenced and do we really have a choice!

 

As a spectrum parent with a spectrum and non spectrum child, I raise my children the same, I realize they have different strengths and weaknesses and simply give them support as and when needed, I think we can worry too much, look into the AS situation too much, as parents I feel we know our children best, listen t...o them, take time to hear what they have to say.  Because while I can give you some insight, truly each child/adult on the spectrum is as varied as those that are not on the spectrum, so treat each child/adult as an individual.

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I am who I am, does there have to be reason, should there be

a why,  I wake up like you, just another day, a unique human

being.  And as much as many continue to stigmatize, many do

not understand, many simply want to change and then I think

lucky me, as my window into this world mine alone, I have been

given my unique thoughts,  creative eyes, a world that is so alive.

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April Autism Awareness 2010: I do not need to wear a color, stand on a picket line, as I intend to be the person nature intended every day and no longer feel shame or hide, no amount of stigma, criticism will change that, conformity does not work, but embracing life and my neurological complexities so does and happy to share my insights, if you have the time. I guess I am awareness every day, as I am an autistic individual, so for my every day the same but maybe different to you and I simple am another human living on this planet, neurologically maybe wired differently, but no less or more of a person and my window on life some seem to struggle at times to understand. We need to celebrate every day as I am far from blue, at times flaming red, but mostly a calming green, but in between a whiteness of empty space where the divide is, between our reality and what we are apparently meant to be and I am simply proud to be me. Many of us can far too easily become saturated with emotion, I seem to vacuum and take in everything so intensely around me at times, I simply overload or shut down. I feel this is partly because those of us on the spectrum are often over sensitive to any changes around us,  including moods, stress, environment and often these are key factors to overloading us, be it parents,  partners, situation changes, it's like with any transition around us, change of routine in our lives we become unsettled and need timeout. There is nothing mild about being on the autism spectrum, we simply have a different intelligence and often our biggest obstacle is society not understanding, so exhausting trying to fit in, because however good we become at mimicking or pretending, not natural and exhausting when we continually have to do all the time, hence need space to desensitize.

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The world before us lies with endless possibilities, so why so

often do we ignore, the very fabric that makes, feeds us and is

a part of who we are, may I suggest consumerism gone mad. I

stand before a building with no description really at all, its grey, its

concrete, it smells of pee. As I get closer I notice the broken glass,

the rubbish and the junkies that past. I want to go, but I know

someone needs me inside. So I move ahead, in the hope their will

be no surprise. The lift is broken, I walk thestairs and their before

me is my long lost friend, who smiles when they see me - real life!

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March : The tidal wave is getting harder to swim against as I get older I must admit, but is there any other way but to push forward and be heard. As I have learned to laugh at the impossible, because anyway what else can we do but smile with a pretence or smile and be ourselves, much more fun.  As when life is hard, for me to look at the deep end gives me sense and reason, which for me is an intense way to express my inner self and I also love the shallow end to play like a child gives me joy.

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Has anyone ever dismissed you, because of your differences, it’s like at times others have said you cannot help it, how would you know you have Aspergers etc.... a weak excuse to try and win an argument, but the amount of individuals during my life time have refused to really listen, but i have news for them all - I have a working brain. At times must seems like living inside a silent invisible scream.......... but at the end of the day, no matter how it may hurt, we just have to take back the voice that they steal from us. The painting "The Scream" I have always quoted as expressing my inner frustration at the world at times, when others are unwilling to let us in. And I feel we all have to raise above and however much others attack us for having an opinion, saying it form our honest point of view respective, we have to not let the majority bully us into silent... 

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We need to impact somehow to show diversity as of course no such
thing as normalisation simply a stereo type of the majority in any given
place.! So I guess as natural, back to basic as possible as helps cross
cultural and stereo type divides. Then no labels needed for others to
discriminate against differences. So we should not feel a need to change,
to fit in with others, be what we never will, how boring that would be.!

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Jan : My first message this year: Each of us view the world differently in our own way, we each see each moment in time often at different times, in different ways and look at different things, which are also often continually changing.... what information we take in and how we perceive what we see, how we them reinterpret again in our own way, the possibilities endless...

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I love so many things on this planet and my imagination at times escapes me as I ponder the universe and often no words needed as I look upon the wonders of the world, i.e. the sea itself has always draw me in, it’s like a healing whisper, hears when no one else does, the calm among the chaos, the strength and powerful force draws us into a magical world and a reminder to us all that there is so much more out there, so much I have yet to see... and 2010 I have decided to captured and appreciate as much of this planet as I can, in my own special way.

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The world is what we make it, it can be a crazy stressful mess, full of nothingness or a brilliant world packed full of ever ending images, infinity of possibilities to embrace, learn and grow if we wish. We all have choices and get to choose what we do, how we do it, so never let another cloud your own unique vision, yours alone, choose wisely.

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- Add your message thoughts for 2009 below -

Recession often means harder times for many, its times like these that

families come together and people learn the true meaning and value of

the word friends and family, people with ASD are often more isolated than

many, please be more inclusive, don't let difference get in the way... who

knows what 2009 will bring, maybe I will get to understand others more!

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December 2009:

A time of year we need to think and give to those in real need, as every child as precious as the next, a gift to those that are privileged to have, yet some children are discarded like rags, always the after thought... A wrong actions impacts often for a life time and in the end affects us all and changes the world, let’s change it back together!

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Each of us born a unique individual and for some of us when not allowed as children, a process to understand self later in life. I now know my neurologically complex self and my smile now real, no longer fixed. It has been a process and because of not being allowed, embrace or understood as a child, my journey in parts like a rubbish tip continually being dumped on. So I speak out in the hope one day we can all celebrate diversity and difference not stress over it...

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Some tell me to get on with my life "we all have to fit in" go be like everyone else! That easy, if only as often the ones I feel care simply curious, often a need to want to know, but do not really listen anyway, well only on their terms which means the polite nod and they say "your be ok" and when I insist I am fine,... they shake their heads, like a sad reflection of yesterday!

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Thoughts of fact - I am still and always will be that different independent individual that no tide holds back. I have learned and at times enjoys being a Chameleon, but after years of being lost in a ocean of people not knowing self, I have broke down my own invisible barriers and am proud of who I am and now have no ... intention of changing, there is no going back.

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For some easier to dismiss me because of my differences, but those that do  I feel maybe they are still searching and questioning in search of who they are themselves or simply content in their own realities, so allowed me mine.  At times it’s still like some try and cram me into a set of boxes, I will of course never quite fit any, so rather judge get to know me, rather than criticize truly listen. Because there still are many not being allowed, lost between who they are and who they should be, so is it any wonder  some young adults hit out in frustration, when the world in parts closes down on them!

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I so dislike the "prefect child" syndrome - of course to every parent their child is special, but in reality no more special or better than the next and often I feel that's why so many conflicts appear among parents on and off the spectrum, but maybe simply parents defending their own nest. And that's what each parent I feel should do, treat their children each as individuals and help support their individual needs, each child is different, like each one of us and I so feel it takes great parents who have courage to do this... it's easy simply to do what everyone else is doing. But of course I so acknowledge when we have many co-morbid’s how complex the world can seem and there will always be some worse off than others, that's what makes me and should others grateful for who we are and what we have.

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I so agree individuals such as Jim Sinclair who has and continues to change many views, but what worries me he has been speaking out for years and still so many refused to listen and get it wrong! More on his thoughts here: http://asplanet.info/index.php?option=com_content&task=view&id=105&Itemid=150 as to me to not tell someone child or adult the reasons for there differences so wrong to me, this leads to frustration and angry and because our differences invisible we should not hide them, otherwise like a shameful secret!

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With the split of neurological differences in my family, sometimes we lose what may be thought as of the average "norn" not sure there is one anyway, and I feel those not on the autism spectrum learn more from us, as speaking about us without us in my experience often leads to conflict, misunderstanding and even added pressure to want us to conform to other individuals ideas, that may never work for us, being exposed to society on other peoples terms has never worked for me anyway. 

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 Being an ASD parent, knowing what it's like as a ASD child - adult:

you may not agree with all my views, but please listen: "Sometimes I feel the

gap between those of us on the autism spectrum and parents of children on the

autism spectrum, views are miles a part and trying to bridge that gap can seem

like crossing a mine field.  But for the children's sake we are all going to have

to find a middle ground, otherwise those of us with ASD may well retreat and

stay isolated. Remember your child will become an adult, I may seem like you

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Yes there has been awareness - but what change!

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@Alyson. The message you have stated brings people together in a positive way. "how well my son does is based very much on the teachers and other individuals around him"(@Kristina Chew), If we come together we can make this world more positive for our children. Alyson, your message brings together ASD persons, caregivers and other supportive groups. Thanks for your great words about everyone working together instead of fighting. Actually I think you said it better than me.
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 I think your message that ASD individuals have to be involved in the process is really important. I think ASD persons have been force to conform rather than be accepted. I can't tell who is ASD on this blog unless the person identifies himself. So on this blog we can all be equal. On this blog you can read the emotion in everyone's comments.  Being a human being means we have emotions. The difference is that each of us expresses our emotions in different ways.
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I found out about the Family Resource Centers in the California Special Education newsletter. Other states may have similar programs. They exist to guide parents with resources and how to navigate the system. I saw them but until today I didn't have any information about them. Seems to me that resources exist but aren't communicated well to the people who need them.

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AUTISM AWARENESS 2009 what is your message?

April.09 - I asked this question on Yahoo just to see response, so far:

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"My message is that ADULTS MATTER! Our mass media and health care profession should be ASHAMED for leaving those many of us to fend for ourselves while they spend so much of their time funding and exposing autistic KIDS. I made that message very clear to the editor of my local newspaper and they *surprise* printed it. ADULT AUTISTICS, SPEAK UP, SPEAK OUT! " Souce:www.youtube.com/user/autisticaplanet

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"I Have a son who is on the ASD. My message would be

to see the ability in the disability the able in the disabled. "

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 "NeuroTypical Doctors need to stop treating us as if we have a mental illness! Autism is NEUROLOGICAL! We are not stupid. We don't speak up, mainly because we don't want to sound stupid, but if I had an email for every arrogant doctor I have seen, they would know how I really feel about the way they treat their patients.Oh, and don't ask the question "so..are you going to have children" with a "oh no, I hope she doesn't" tone in your voice. I'm a damn good mother, and yes, maybe I did "pass on" A.S. to my daughter... it's not AIDS, it's Autism, and it does not have to be a bad thing. It's different, not evil."

Souce: I have Aspergers Syndrome. www.americanaspergersassociation.net

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More to follow...

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My 15 year old aspie sons message for 2009:

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My 2009 Message – I wish for understanding, acceptance and to be allowed

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While there is a need for different kinds of education the word special needs to me gives the wrong impression, with all my differences I am no more special than anyone else or more gifted. All children are special to me and all are gifted in some way, ASD children may have some strength's, but equally you could say as we live in a world where we are often so misunderstood and at times this gives us a huge disadvantage and in some instances many weaknesses.

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It frightens me to think that still so many children have to take that pathway of chaos, confusion and conformity.....  The amount of none aspie parents who ask for me a list! I want to say your children are not animals to be trained, but know the ignorance is often not there thought alone, but huge inconsistency of awareness around the world, any parents can look at list or information, on or off the autism spectrum... but to really understand a child that is different, get to know them on their level.... as no 2 individuals are the same on the spectrum... my son and I have such a great relationship both on the autism spectrum maybe that helps.... but if I was to read and take a lot of the list of what I should and should not do and apply, feel I would lose my close bond I now have with my son .
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Time and time again I see children and parents at odds with each other, the frustration and anger like two trains going in opposite directions.......often the communication none existence,  each believing in their way of course neither is entirely wrong and the only way forward I feel is to really listen, hear and understand and compromise, as control and enforced conformity to me has only cause pain, over many years I have not changed, yes I now know how to play the part to fit in and keep others happy, but in the process have lost myself, endured much pain and still at times feel alienated to a world I was also born to live in....
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So please embrace your child's differences, get down to their level and try and understand, no list will change an individual as its always someone else’s point of view.... listen, compromise and work together and then maybe the world will start to be a better place for us all. Truly see through their eyes because as much as we listen we learn, as much as we give we receive.

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Differently minded children, need different education not special (that word has really out lived it time) and if gift means misunderstood difference then maybe it has a place!. To me everyone has strengths and weaknesses and every child is a gift. ASD “disorder” why is a difference a disorder, I feel  too many unnecessary labels to explain what others do not understand. We can disguise who we are, we may be differently minded, but no label will ever change who we are “special, gifted, disorder” irrelevant to me, I may be different from you but does that give you a right to label me as you please, would I do that to you…

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I have Aspergers and while it intrigues me our complexities and extremities, my anxiety comes from my own complexities, my personality being blurred edges of reality, as diagnosed late in life what part is aspie and what part enforced NT. As in Oscar Levant quote: “There is a thin line between genius and insanity. I have erased this line.” Our complexities of mind, our obsessive tendencies push the boundaries - disorders such as OCD, bipolar maybe they are just extremities of difference. Labels we are given by professionals trying to figure us out, and then feel a need to want to change, conform us to fit into their world - but we will never fit into neat stereo type boxes!. This is not meant as a statement, just a process of thought, just an idea to get others thinking differently, should we in fact label every difference? or allow for more extremities in this world, we cannot explain everything - autism, the universe and never will.

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The way I see it: Apart from being on the autism spectrum I have many co morbid / associated conditions… in fact a whole list, not sure anyone has it right, including myself. Often our labels can get over complicated… and near impossible to know which bit is which, with many overlaps, but any label does not change who we are. I have my own simplified version - The center as I see it, is us - the Autism heart, differently minded part… which to an extent feel many NTs just do not quite get or understand. So often the most important thing the centre, gets neglected, so it’s no wonder we are often a little off balance.
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Surrounding the center are a web with many chaotic paths, often disjointed and ineffective, as these neuro associated conditions, co morbid mental disorders (or misunderstood difference), environmental factors are all blamed and continue to circle around the most important part of us. I feel its time other started with the centre - the Autism Heart, forget the labels. Because if our hearts were balanced and allowed, as I see it. A lot of these existing links in the web, may start to fade… I feel many of the labels are often caused by others misinterpretation, dealing with small aspects of the whole person, often neglecting or not understanding our centers from when we are born.

Screammmmmmmmmmmmmmmmmmmm until no more! I can totally understand the painting “The Scream by Edvard Munchu” great painting, but feel you have to know to appreciate. As at times I feel unable to be me in the presence of others, even those closest to me. I feel not in control or responsible for my detached expression of thought, as the effects of misunderstand thought from others can be exhausting. I withdraw inside at times an urgent need for my own space just to be… go away, leave me alone as I cannot always live in the shadow of being you. Visitors at times seem like an intrusion, unwelcome invasion, my words of thoughts at these times can seem confusing, odd to those that expect the norm!

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To many that feel they know me, even well, see me as a person able to face anything, not true. The aspieness how ever hard I try at times stops me from expressing myself in a way those closest to me understand, the emotion void I face at times leaves me in an empty space. To express as you want leaves me cold, to express as I need leaves you feeling rejected, so I am trapped in middle ground. There are no answers, it takes a huge effort on both parts and not easy for any involved. So at times I retreat into the world that surrounds us all, which always brings me a sense of peace.

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My feelings and thoughts are there and often cause me great anxiety when unable to face up to my real emotions as you may wish, myself at times saturated in guilt, that never goes. I try not to think too much at times as my over analytic mind continually worrying, the perfectionists in me wanting what’s wrong to be right. Sometimes I want to stop thinking find anything to take my mind off some of my inner turmoil, mine alone as very few truly understand. It would be all too easy to be resentful, be angry so I write, I express my thoughts.

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I do feel that those of us on the autism spectrum, one of the biggest problems we face, others not finding our differences acceptable and then feeling a need to get us to speak to a so called professional to help us conform. I agree some people do need extra help, but like the one I saw when diagnosed who was still trying to figure out what it was like having aspergers and the real problem as I see it, professionals not on the autism spectrum treating us like NTs and we are not... not there thought of course, as there is not enough good specialists available.

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Quote from email sent to me: " Autism is a physiological diversity of brain function eg. Bill Gates, Edison, Newton and Winston Churchill. To force mind altering drugs to treat a physiological difference, not an aberration of cognitive function is medical malpractice.According to international reports malpractice causing death is not unknown to this branch of medicine."

I tend to agree my mother like many, years ago was wrongly diagnosed, treated and feel caused more harm, she was never happy, fitted or understood herself, drug after drug and just became more depressed, that's why I choose not to medicate or see anyone, but truthfully the thing that has and continues to help me is having other likeminded people to understand, and allow myself my differences.... Our misunderstood difference is often our own invisible prison. When I am most overloaded and need space the last thing I need is other people, but many do not get if I am not happy or fit in their terms, I need to be fixed... it has taken me many years of confusion and suffering to find self, but at times it can even be a struggle for me, as exhausting always playing the part to fit in on everyone else terms...
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Feeling like an outsider in societies never easy and know only too well what its like being on the edge of society. The government departments etc... 'Closing Ranks' to safeguard their ideas and what they know, what works for them. So I cannot help but agree with this quote also from email sent to me "people are not free to 'Do The Right Thing', Only Free to conform, The 'System' loathes non conformists, they can't control them, therefore they subtly will attempt to 'Remove Them'." side line, ignorance, label it sadly happens all the time... and so no wonder many choose to not to speak out.

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Or worst in their own isolation and / or alienation they drink etc..., been there and at times still feel like being there, helps close out the world and be in our own reality for a while, of course not a long term solution, but while many continue to be very narrow minded and alienate difference many will continue to suffer, often in silence as it can be so hard to find others to listen, let alone understand. Partly the reason I set up a web site on my own, so all aspie thoughts and to take away control of what I could and could not do, to allow you to hear on our terms.....

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But I truly feel the more our differences are embraced, the more advances and discoveries will be made, and so feel more resources should be going into embracing and educating ASD difference, rather than trying to figure and change….

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Comments:

Thank you Alyson for this latest message.  I too see my autistic experience as a journey of the heart., as you know my book is called A Journey of a Soul with Autism)
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As I move out of the shadows and into the light, I see how survival took priority over autistic expression.  As a child my autistic arms were severed, and out of such misery and in such darkness I sewed together the limbs of the world............the stitching was so fine it was like a seamless garment.
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As my cloak of evasion is slowly being put into a respectful retirement place, and as my NT limbs are falling away, I feel the enormous pain and terror of facing life disarmed...........I am convinced that people like myself cannot face this process without the support of which you and others are offering.
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Although therapy might have given me tools for emotional expression, taking me from my head to my heart and thus helped me no end with overcoming many problems stemming from theory of mind difficulties...........only the understanding of myself as an autistic man, has offered me a bridge from 'my world' the 'the world'...........your work helps in the construction of this bridge......................................THANK YOU.

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Respected all,
I send you all my best wishes. Would like to say something that helps, supports, but cant find words. Every day I also struggle with the necessity of behaving adjusted and the essence of my own inner being. Sometimes it makes me laugh, the NTs can be so ridiculous from where I am looking. But it is also giving a feeling of nausea and suffocation. They are totally uncompromising in their powers the dominant force and their certainty of being right about what is right. I am not sure dialogue or understanding will ever be possible. The only people I have ever experienced a sense of understanding and togetherness with were probably also aspies. But I suppose we should look for every opportunity, every gap that could open up for greater mutual acceptance and understanding. So I wish with my true heart we will all meet with such opportunities in the new year and that life will become better and easier. Pankaja
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PS, I also wish for the new year to maybe find better ways within myself to balance what I experience as my reality with all the pressures from outside to behave in what is the accepted way.

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Thank you for that thought promoting comment, Alyson. Many NT's want us aspies to conform, and fit into their idea of what is normal. yet what is normality really?? who is to say that asplanet is not normal, and the NT parallel planet is not the one that is "different" and need special interventions?? 
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i do hope that in 2009, there is a greater understanding of aspergers, and more NT's decide to educate themselves.

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- Send me your 2009/2010 Messages / Thoughts to add -

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Recommended read - My life as an aspie

"What an awesome piece of writing.  There is soooooo much I can relate to... "

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