asplanet.info

My Voices and Choices Article(s)

"Those of us who were surppressed as children, institutionalize, held back

for many reasons now have a voice, but I cannot help but wonder if we were

embraced as children, what advances or other things may of been missed.

Many including self feel we are the way we are for a reason and so find

it hard that many still feel a need to change us!" article on this soon!

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August 2009 - Issue 3 :

Relationship Entrapment (update Sept.09) Those of us on the spectrum and parents with children on the autism spectrum despite what you may or may not of read, there is so much hope for everyone, we start out with dreams like everyone else.... our differences often seeming extreme to some and the “norm” to others, we are all born uniquely different and we all need to allow, embrace  each individual whatever difference, the problem often unknowingly individuals enforce conformity upon us, knowing no other way themselves, for us trying to be and act in a way that is not natural to us, simply does not work. For any relationship we need to first fully understand, accept and to be able to allow and help others understand our differences, and who we are as individuals.

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The down side at times by simply being ourselves, because of lack of real awareness in the world, however much we realize we impact on others, our invisible differences often leads others to misinterpret who we are, labeling us wrongly, even discriminating against us. Those of us on the spectrum if not embraced from birth often lack self esteem in self and it can be so easy to become paranoid and think that in fact there is something wrong with us and we may think we will never be able to have a relationship, often settling for second best, or anyone…this of course is so wrong, as can lead to all sorts of abuse, complications in relationships later on.

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One of the problems I feel is that far too often others interpretation on how relationships should be and at times ourselves feel we need to have relationships like everyone else, often not knowing any better and so go along with everyone else’s terms, which often does not work for us, but then how are we to know!  What so often happens next when things do not seem right, we may become insecure in who we are as individuals, we wonder why we are different, our extremity in a way often brings to light, our differences, which to others can seem our faults... and it can become quite complicated if others feel a need to stereo type us to how we should be and if not confident in self all to easy too start to lose part of self?

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There is no blame, but a history of years of an invisible difference, that is often open for general discussion, more than truly understood, open to all sorts of wrong information, fad treatments, but also often a puzzle to many with nowhere to turn and in wanting so much to do the right thing, often get it so horridly wrong, that's why everyone needs to keep the lived experiences of autism windows wide open and step back from time to time, as there is always another way apart from your own!

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The complexities of how we do or do not connect, so many things we question ourselves, but far too often unsaid, unanswered and that void of not knowing eats away at our self esteem, a heavy burden for anyone to deal with, no wonder at times when others smile we look away, avoid a life we feel disconnected with, we stop reaching out, if feel rejected, crushed at every turn can be simply horrendous for some at times, it’s like we tread on thin ice, want to be accepted, but so often our naivety leads to others taking advantage, abused and rejection. This may seem farfetched, but to the mind of a misunderstood individual it can be devastating, being misread continuously... the damage starts, often no clue why, many suffer in silent!.

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From childhood it can start, the support and comfort often does not come the way we expect, at times we even get told off instead of maybe being praised, a misunderstanding of course. So no surprise some of us simply withdraw into our own world, as  the constant reality reminds us we simply do not fit! Often we so want to be understood and simply embraced for who we are, instead we get seen as the awkward, difficult children, our misunderstood emotions mean we simply cry inside, or hit out in frustration..as often our voices go unheard. Our parents often having no clue can unintentionally disconnect, even discipline us and enforce conformity without realizing. What choice as a child do we have, so eventually we give in. often to a pathway of self destruction, the pretense starts, a part of self slowly lost, in a way stolen from us and the false fixed smile may look real, but the eyes say it all, fixed firmly to the floor, sadden within. The safety screens start to close in..

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We start out in life like everyone else, as a small child with so many dreams and hopes, but our paths so often so much more complex, like crossing a sea of glass bare foot, the harder we try the more we at times get hurt, our attempts of being heard often rejected and the answer yet again, that’s not what children should do or say!. And when we find what often we are asked to do feels so wrong for us, our small truths are simply lost as childish words, with often no clue why, because we simply have no idea why our efforts are rejected, why we are not heard, not understood or accepted, so we remove ourselves and watch endless videos, films and feel and want so much to be like those other happy children, people.. life of course not so simply but growing up to us maybe we feel it should be, and in our minds to be allowed we will try anything and in an attempt to get things so, so right wanting to please maybe we compromise yet a little bit more of self.

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Next comes the whispers, the labels, disturbed child, sent to exile, discarded, others talk about not to, some may feel sorry for you, even call you the unthinkable, the bulling starts… Reality the invisibility of real self starts to be apparent, your differences are yours alone and no one seems to understand, and so the lonely journey begins and any recognition, affection in our naivety to us better than none, at our lowest moments like a disused rage. And like everyone else we often only want what others have, want the bullying to go away and hurt to stop. We start to respond to any kindness, of course often we are just being taken advantage of and do not know any better, especially when we may feel no one, including at times our own parents do not understand, of course many parents try so hard to and do, but our disconnect, difference  in communication can mean we feel no one is really listen, let me explain more.

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A child, rejected by life itself, well so they think, confused and as they see it instead of others trying to understand, they feel others are letting them down, try and enforce conformity, of course parents often just doing what they feel best, but can only be guided by what a stereo type of their vision should be, and often wrongly informed or simply unintentionally because of lack of real information from those with lived experience and some do not understand there is in fact a whole different neurological way of beginning, I guess often parents do not know there child can be any other way. Let me put it another way, as an aspergian parent, if I was to enforce my none autistic child to be and act like me, an autistic individual would that be wrong, of course, so why not the other way around!

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But this is where I add warning, as an aspergian child myself who was often extremely naive, lack confidence in self I was easier pray and lead a stray. Unfortunately my intelligence help me cover up to the outsider that there was anything wrong, or maybe my misunderstood emotions. Anyway this piece of writing is just setting the screen for what can happen in relationships and why, so for now parents, I will just leave you with previous thoughts to think about, but the consequences of not allowing a child to just be, embrace for the individual they are can lead to a life time of battles and challenges later on, before the individual finds true self, like myself.

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Young adults these are the aspergians I am most concerned for, the ones that can so easily be pushed to the edge of life itself, time to speak I feel about real situations, be very real, because the consequence harder to deal with. We can all smile behind polite curtains and pretend life is ok, hide what deep down we know is wrong, does not work. I am not saying any mistake anyone’s alone, varied reasons often misinformation which varied and continuous. Which does not help those in most need, often being rejected, labeled as odd  and often broken from being exposed to a society that simply is unable to understand or does not want to listen, taking away apart of the individual, which in turn leads to frustration, anger, confusion, chaos and so a path of isolation, alienation and the consequences unthinkable, but we continue to allow this to happen!

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What happens when a spectrum teenager feels totally at odds with life, society, this can show up in various ways,  the obvious being to remove themselves from what they see as unbearable for a while to ease the pain, by taking various substance, but also could be over eating, under eating but whatever spectrum individuals tend to do to hide the emotions others may not understand can be obsessive and this can be dangerous and sadly often places of support do not really cater for our obsessive tendencies of agpergians, as treatment such as AA may not work, because if no longer do one thing, another obsession may easily take hold. A factor that needs to be mentioned those in need that do not get help and on the edge of society often by society itself can lead to suicide, at times a desparate need to be really heard. For lost teenagers it can be a real danger point and sadly so little help for this age group and probably the most in need.

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Relationships often do not work for aspergians, because often they have only learned the average neuronone spectrum typical ways growing up and which simply may not apply, work for them. This can cause all sorts of problems, in their attempts to be, want to be like everyone else, they can fall into the wrong crowd, get into trouble, become addicted to alcohol, drugs, food whatever their obsession being to take away the focus of pain, as while individuals with Aspergers may comprehend the feelings of others, they often lack the ability to express this knowledge without prompting . This does not have to be the case of course, because for those embrace from birth, this simply rarely happens.

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But growing up and entering the world of relationships, pressured from peers and realizing that it simply does not seem to work, some end up in situations that can make the individual feel extremely awkward,  not fully understanding self emotionally and lacking self esteem often leads many on the spectrum into what I call relationship entrapment. Partly reason can be a need to have any relationship, not liking change and lacking self believe we can put up with so much more than we need to, we are often very genuine and honest and can be taken advantage of. We need to teach our children that they are intitled to relationships on their terms, but sadly within the wider world of disability, diversity and difference often relationships outside the “norn” are frowned upon, maybe time for society in general to rethink and wake up, there are many diversities and differences maybe we all need to be a little more open minded.

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I think acceptance of individual difference has to come from yourself first and those that do not face up to who they are, frustration happens from lack of self fulfillment of self, I guess the main thing is not so much about the labels but all excepting our differences within each family, and to remember not everyone can express emotions on tap like others may want and guess we all need to teach our children all to know of the many diversities and differences in this world and there is more than one way of showing and doing many things. For acceptance in society that has to start with education from all adults. And to simply remember we can all learn from each other, as I feel we should celebrate diversity and difference not stress over it, with understanding comes awareness, comes acceptance...

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Sometimes as I have found myself, when we judge others is it for the right reason and at times I have to look on how I impact on others myself, my family except my differences and know that’s the way I am, because I have always reinforced my love for them in my own way, however rejected I have felt myself and recognize I have my own issues and want what maybe may never exist for me.  But I am still learning to communicate my differences as being diagnosed one thing, understanding self and all my neurological comolexities all over again takes time.

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I guess I am the same person as I was before any diagnosis, but as I continue on my own journey I am changing and I realize that those around me for some that may never happen, or happen at a different pace, so in the mean time I have had to learn to communicate and continue to remind those around me as saying once never works, people full back into old habits, maybe my words are not what others expect, as many aspie’s show rather than say. So if we do not communicate well, there are other ways to communicate, be it email or whatever, this works well with my aspie son at times. Unspoken words put in writing also have so much more meaning and a great reminder to our love ones when feeling at times misunderstood rejection.

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Each and every one of us a unique individual on or off the spectrum, what defines me as an autistic adult are my neurological differences, the way I am and interact in the world, if I was blind I could not pretend not to be who would that benefit and by pretending to not be autistic would be for me like going back in time, my differences invisible to many so yes I need to acknowledge so others, including self can understand. As to me to not tell someone child or adult the reasons for their differences so wrong to me, as this can only lead to sadden, resentment long term and a future of complications. Our differences may be invisible to some, but I feel we should not hide them, otherwise like a shameful secret!

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Me and my 2 boys and other photos:

http://www.asplanet.info/gallery/main.php

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Just to add I am a aspie mother with 2 beautiful sons the older also on the spectrum and have been with my husband for nearly 20 years. There is no reason that asgerigians can not be mothers, be married, be happy the only thing that held me back for years was self, I was brought up all wrong, misunderstood by many including self for years, I survived my teens somehow far from easy, but even when I discovered Asgergers not so long ago as diagnosed later in life, first brilliant it help explain so much, then lots to face up to, a change that cannot happen overnight, but highly recommend. As now I understand self, I can explain things to my husband, family that I never could before, but knowing not only I feel have I grown as a person it has helped and strengthen my family so much. Maybe we all need to be a little more open minded! [Alyson Bradley - born UK, live in NZ- August 2009 for  V&C Issue 3]

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 For more on relationship advice: Unconventional relationships

never easy - mix in some asd traits, expect the unexpected

http://asplanet.info/index.php?option=com_content&task=view&id=100&Itemid=146

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Meltdowns, Shutdowns and Complexity I feel it’s more society in a way, you could say we start to be damaged from when we are born.... anxiety exposure as Donna Williams calls it to a world that often does not allow, accept or understand us on our terms.... no one of us can play the part all our lives!
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Sensory issues I feel have a HUGE part to play:
From when born the environment around us can have a huge impact, as with me I was an unhappy baby that did not connect and I had no way of knowing it was any different, so I simply started on a never ending journey that was a little like a self destruct scenario, no one knew of course not even me at such an early age, but not quite connecting, not understanding and being treated text book style has to have an impact long term...
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As a young child I was seen as a loner, difficult, pushed into many situations that were uncomfortable to me and so withdraw more, found my own way around things, I had to. I latch onto other adults or younger children, at least they seem to enjoy my stories and drawings, as the children my age just thought I was odd and so I withdraw more behind my own screen into my own world of make believe, self protection, to my parents and others I was just the difficult one...
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As a school child my world was hard enough and then I entered that huge empty echoing place, with so much noise I could not hear, I could not focus and impossible to read a blackboard if I you dare look, because if I did look up, someone laughed, made fun, yet more abusive. At times so unbearable, but no place to hide I had no choice but to endure. What the other children enjoyed and talked about, made me feel more of an alien...
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As a teenager by then of course I had endured years of bullying, being misunderstood, dismissed, put down and let down... others talked around or at me, never to me, spat, pushed, laughed at me, like a dirty rag, so yes I was angry at times, often very lonely and extremely sad with the world, frustrated and felt not heard. I did not hit out, but took on broad all the pain and hurt inside, I think the painting "the silent scream" best describes the intensity, life at times unbearable, but somehow I did survive..
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As an adult I had been beaten down, given up on in a way and so just pretended to be happy, others took advantage, I just learned to wear that mask extremely well, but behind it often a deep sadness not only I could not relate, no one seem to like me, life itself never quite worked, society continued to let me down, so yes from time to time the frustration built inside, and what usually followed was meltdown, shutdown, but often I just withdraw from the world to cope...
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As an aspergian a breath of fresh air, like for the very first time in my life I can breath, allow myself to be myself, understand why I am, still having to deal with the after mart of living most of my life a lie, not being accepted often by the majority, and still a need and feeling of often having to justify my change and so I reach out,  so wanting to help others out of the shadows of life itself and I can only hope no one saw the world as I had to.
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While I feel some of us may have other associated conditions that also triggers there moods, many have and continue to be let down by society itself. There are no easy answers some find it hard just to connect with their parents, I never could with mine. When younger I did do voluntary work for a while and I always seem to get on better with what others saw as the more difficult children, partly I feel I could relate, but also I always listen and really heard them. My advice if not already is speak with them, ask them and work with them, as being told never seems to quite work with us aspies / auties we are often very intelligent and have minds of our own. But some of us do need extra medical support and help, partly I feel for some of us this is a buildup of feeling alienated and disconnected with the world, no easy answers as each child has had to endure their own journeys and often quite lonely ones, in my day we were disciplined for being different! [By Alyson Bradley -  June for July 2009 V&C issue 2]
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Born different

What chance did I have

Born as the second twin

The after thought

The one that cried

Rushed away after birth

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My mother only wanted one

I was the problem child

Alone to scream out loud

Awkward, gawky , sad

I never really fitted

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He was cuddly, I was thin

He smiled, when I cried

He had bright blues eyes

Mine were different like me

Odd, One Green, one Brown

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He got all the attention

A happy cuddly bundle

They would just look at me

what’s wrong with that one

As I was sick yet again

Alyson Bradley April 2008

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Autistic - How we affect others and how they affect us!

No easy answers, no one answer as we are as different and varied as those not on the autism spectrum, so I will generalize but let’s just say as for me born differently, have I been misunderstood from birth! should I have been treated differently, everyone is expected to treat their babies in a certain way to a point, but what if I sensory overloaded and no one knew, what if my cry’s where sensory related and no one knew, at times I wonder has society misunderstood some of us from very young. The crying babies, the difficult child. No longer can you enforce conformity, disciple away a difference.

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The thing I do know as a child, I had a kind of safety device of my own, and with each let down, put down, misunderstood difference there would be so much I would put up with, so much I would or could take on broad, deal with or not. But eventually my shutters would start to come down. It was like I had a set of 3 and once the third down, very hard for anyone to remove, my way I guess of keeping out the pain and hurt, my own self protection or as many call it the “invisible screen” and to this day I still use. But as an adult, I now realize there are some things I need help with, some issues I need to work on. But at times after years of zone self esteem, let down the shutter stand firm and it’s hard to reach out and ask for help.

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Unintentional or not I do feel we are affected a lot more than we affect others, as we simply are not allowed at times, well on our terms. Does the majority understand how alienating, frustrating and hurtful being shut out of the world can be. Having to continually conform, pretend to fit in exhausting and so I feel yes we need to be aware of how we impact on others, everyone does, but I truly do feel others need to get real, and yes of course they often unintentional impact on us, but they can have a huge impact on many of us and that can have long lasting effects, and for some crush the individuals we were born to be! I can it being pushed to the extremities of life.

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Someone ask me if I have decided to be myself and not pretend, they found that admirable, as they understood that for some of us the way our autistic differences manifests requires us to make an effort to behave in ways that may not come naturally to us, and where aware how most of us seem to be very accommodating and considerate of others. Generally we are and we go out of our way to not be noticed so do try hard to fit in and to a point everyone does, but some things are out of our control especially sensory wise. My triggers, moods, anxiety to life at times I do not always have control of fully and can be extremely stressful.

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The problem often being I feel for many our differences are not allowed, our real self can get trapped within and we withdraw, this can be damaging to us and those around us, as when we block out what we cannot deal with, at times we can also block out those that care, I often seem to push away those I care for the most when hurting, not coping with life as is. When growing up as others grow in confidence and are encourage, far too often I feel autistic individuals if not embraced there lines become confused and in trying to be half and half can end up losing part of self in a way, whereas many children are encourage every step of the way, I found myself being pushed back, broken down, discourage to be self.

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Of course I do feel at times like everyone whether it be autism or something else we need clear boundaries of what’s right or wrong, and we all need to make an effort to behave in ways that may not come naturally to us but are more considerate of others at times. Myself I think I am adult enough to know how I affect others or not, but others often seem blind how they affect me and now I understand self, I have a choice to play act and smile polity or not,  lets just say I am less willing to do that as I get older. Guess I am lucky as I gain confidence in me and I know the more I believe in self hopefully others will or not!

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How often do others make the effort for those of us with a difference, I have spent a life time of having very little consideration from others, so if I dare be myself now and again is it a surprise! What I mean is for the first time ever I have the confidence to be self... yes I am a mother and still have to play the part to an extent, but I refuse to play act to please everyone else all the time, as I never quite fit in anyway... I so agree with what someone said to me once “stick with likeminded people” as that does really help, it’s a bit like not being within your own culture, however much you fit in, deep inside there may always be a part of you that needs to be fulfilled and we are the only ones that can do that mostly, the autistic community.
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Saying that of course if being honest with myself, I accept that while there is still far too much misunderstanding and ignorance in the world, there are also many none autistic individuals that are really trying to build bridges, close gaps, which is brilliant and bringing so much more recognition and understanding to the autistic community as a whole. But the ones that have helped me the most is the autistic community who have welcome me with open arms, a little like coming home for the first time, an extended family where I fit and can be. This is what has and continues to help me, thanks all J.

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We can also behave in ways that are genuinely anti-social or difficult for others because of our condition, and because we have not learnt, or choose not, to mitigate our condition. But also I guess we need to remember many of us grew up with no clue, often being put down just for being. So if we grew up and no one explained, of course some of us will be a little lost, confused in a world that often does not think outside at times its narrow-minded box. Of course there are strategies, learned behavior things we can do, everyone can do. But for those of us who have often spent years finding true self, should we have to change, isn’t it about time people excepted us for who we are, allowed and embraced. As what is unacceptable behavior, and what is just us being us?

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Of course there is a difference between a behavior that is undoubtedly autistic, such as being very honest, or humming and talking to oneself in public - but which doesn't harm anyone; and the more 'bothersome' (to others) behaviors - such as constantly interrupting others, shoving our opinions down other's throats, or rudely pushing our way through a group of people because their presence and needs simply don't register. There are also ways and ways to communicate our thoughts, though this is a more gray area - it's hard to frame our thoughts, feelings and perceptions into words that others can understand, without feeling like we are 'translating' into a foreign language.

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As parents like with all children we can only embrace our children for who they are, listen to them and work with them and as with all parents clear boundaries on rights and wrong a must. To a point at times myself I still back out of society at times in order to cope, and partly because I am less willing to conform as get older... but finding a balance what works for you as an individual is important, life in a way is a compromise but I do feel so much harder for autism spectrum individuals, as too much wrong pressure can scatter our thoughts until our routines are back in place, sensory overload can turn a reasonable situation into chaos! 

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Quote from an asplanet forum member:”Many autistic individual are very aware and intuitive and yet most of us lack a social something, which is very hard to define if we haven't had it in the first place. Rather like describing color if you see in monochrome.” This I tend to agree on and feel many of us on the autism spectrum offend unintentional at times for a number of reasons, simply our bluntness, honest approach or a reaction because of sensory reason that gets misunderstood and we get judged often so wrongly when this happens. But at the same time we often over analyze look more into things than need be, maybe partly because we often get put down so much growing up, just for being and in a desperate need to fit in, get it so wrong at times..

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With me as I get older I have almost become too good a judge, I have become an incredible actor over the years when need to be and know what I should and should not do, I so pick up on everyone and every feeling, it's like at times I can read senses and guess taught myself how I should be in different situations, I know I am lucky because of my extremely fast processing skills and other positives, but the down side I almost over act and seem to others very able to cope and feel this is because over the years I have had to hid my intellectual learning differences, insecurities as to me at times a frustrating shameful, secret ... its like I have been given this amazing mind without the tools to use it fully and yes I am aware I get frustrated when people try and tell me what I know!

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I also feel a big problem is that for some reason those that do not quite understand our differences feel a need to label us often into there criteria that has no relation to who we are as people, and we are seen as our every growing collection of labels! Now this is where it gets interesting to me anyway, others feel a need to want us to conform to there standards which of course may never make sense to us, so as hard as they try to fit us into tick boxes, we don’t, won’t fit into, this needs to change and this is where so much more inclusion of autistic adults is needed for every decision “nothing about us, without us” should always apply. As some do not even understand why I am happy to call myself a autistic adult, a word some will not even speak!

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Voices and Choices - June 2009 - Issue 1

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Alyson Bradley Bio:

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My name is Alyson Bradley.  After discovering myself to be on the autism spectrum later in life and have other associated conditions, a few neurological including being diagnosed with Aspergers, I guess you could also say I am intellectually disadvantaged, having dyslexia and dyspraxia and other differences... Shortly after I was diagnosed, my son Stuart Bradley also was diagnosed as being on the Autism spectrum; and unknowingly I have grown up surrounded by Autism spectrum disorders; many of my extended family are now starting to be diagnosed, a lot less common than any of us think.

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At first, I didn't know which way to turn.  I started to read and read some more, looking for answers, and over the last few years I have done extensive research and have now set up my our web site and support forum, my web site shares my journey and  others and I have found the more I reach out, the more I heal and get to understand self: .Aspergers Parallel Planet bringing together those of us who are differently able and AsPlanet forum read, share, ask or just somewhere to feel understood and matter http://www.asplanet.info/forum/

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Autism Awareness Worldwide Is the Key to Our Rights

By Alyson Bradley - Issue 1 - June 2009

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My name is Alyson Bradley.  I have Aspergers and other neurological differences; for me while I know so much is already being done, so many people advocating, there also to me seems to be 3 sides -  those on the autism spectrum, parents of children on the spectrum, and everyone else; many still trying to figure while reading many conflicting views.  At times to me it feels like those on the spectrum and parents of children on the spectrum are in different groups.  I have been working alongside many parents; and while at times frustrating, yes, we have differing views and see from different points of view, we all want the same thing and I feel it’s vital we all really listen to each other.  While I continually listen to the non-ASD community, I get the instinctive feeling many would like to stereo-tape my lips!

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There has to be a middle ground.  I have started an ASD exchange of conversations because instead of fighting we need to start talking; until we can build bridges among ourselves, the message to the wider majority will continue to be conflicting and confusing for many.  This is not easy as I continually find myself trying to restrain the real me, my real thoughts, so others will listen and not write me off as some ranting loony… something of course I am not, but for some reason my differences seem to scare some, many would prefer I conformed and continued to pretend to fit in, for who of course then only the non-ASD individuals…

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Here in New Zealand, I have helped to instigate the first ever annual autism awareness fun run.  I have Aspergers, and the core group of other mothers have children on the spectrum.  While we did not always agree, I feel working closely with those that do not fully understand really helps;  and I am so proud of the other mothers as we all have children on the autism spectrum... when we started, no one thought we would achieve much, but together we achieved so much more than any of us ever imagined. 

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The day itself opened my eyes; for  me one of my most special moments ever, I felt so allowed, alive and all I can say right now is brilliant - every child, individual came together, we planted a seed and it grew so much more than we could have ever imagined... I saw so much joy and at the finish line so much pride, well over 1,000 nearing  2,000; do not yet know numbers but that does not matter, hardly a child sensory overloaded and the odd child that did we had a resource for that, it was a place and a chance for many just to be and I felt so privileged to have been able to help arrange such an event... it has opened my eyes to see that there really needs to be many more events that are inclusive, where parents can just relax and not worry and every difference is allowed.  And it was great to feel in the majority myself, surrounded by like-minded individuals.  I felt a real connection, sense of belonging and feel this is what my daily life should be like - not a continual struggle, written off at times as a misunderstood difference.

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I will quote just some information from one of many conversations with a parent of children on the autism spectrum I have connected with on my own journey to help raise awareness and the response I feel incorporates an important point:

“These are important words. There should be more inclusive events that are created where differences are allowed.  There needs to be more interaction with the world.  In the early 1990's, the autistic/mentally disabled community group members came up to us to hug and invite my son and I over to their group.  People in our community were taken aback. It was nice for the first time for our family to be able to belong to a group. When my husband and I hug these disabled members other people were shocked. Eventually others started greeting them. By interacting with normal people their status improved.  In a few years the disabled were allowed to participate in church activities like pass around the collection baskets, ushering etc.  Their differences were ignored.  Regular people treated them as capable.

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It was the visibility with other people that changed attitudes.  Today in our community people don't see the disabilities.  They see the abilities even in adults that can't speak or who do things differently.”

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From a friend I connected with on my own journey, good positive awareness often can have positive outcomes, personally I am tired of fighting, yes I will stand up but also feel it is just as important to at times work alongside those we do not agree with; as often this is where we can have the biggest impact, not easy as myself I have found extremely stressful at times, and I can get a little people overdosed sometimes and just want to hide away, but this is my world also.

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I feel this sums up the huge tasks ahead for the ASD community: “It is a paradoxical but profoundly true and important principle of life that the most likely way to reach a goal is to be aiming not at that goal itself but at some more ambitious goal beyond it.” – Arnold Toynbee.

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But to me, days of togetherness, being out there and realizing that so many in the community want to understand, want to know gives me so much hope for the future and for my own children.

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For myself at times as one door opens 10 seem to close, the tide is turning slowly, but at times I feel like I am chipping away at a mountain that may take more than my lifetime to shift.  So I feel it’s vital to unlock many individuals’ isolated existence; worldwide awareness is needed, as up until now many ASD individuals do not even have the key to their own lives.  I so agree with the NAS quote: “Nothing about us without us”, but to add we all need to be more inclusive and exchange information, help those still in the dark see through our eyes, and it gives me hope that many want to and are starting to listen.

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Quote: I will dip whatever I want into my tea... as my way may not always be right in your eyes or your way, but its mine, why does it bother you!" So I cannot help but wonder as I continue to hear those that question most, who are they really questioning, but self.  And I have heard it said truth goes through 3 phases, it is ridiculed, denied and finally made self-evident.

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With so many brilliant autistic individuals advocating, I cannot help but wonder why so many continue to bully and discrimination so obviously against the wider autistic community.  Many schools fail to support autistic children and until at least all children get support many adults will continue to be afterthoughts!

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I feel EDUCATION is not meeting the needs of most ASD individuals full stop.  There is a huge lack of adequate services for ASD individuals’ education; employment and life...  I feel there will only be real change with worldwide recognition, quality services and consistent knowledge.

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Yes, there are some good examples of things that are going on; but speak to another parent, individual and their experience will be completely different to the next.  I see it often as the nice families so often get the most support, those non-autistic I individuals with autistic children and often that way they do not need to really involve the autistic community, give us a voice or listen… when will others let their children become adults like us?

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Autism, and similarly Asperger syndrome, can be lifelong developmental disabilities that affect the way a person communicates with and relates to other people.  Yes, some individuals need a lifetime of specialist care and others can live relatively independently and are left to do so, but often when their individual needs are not understood, not allowed, and the majority rules, we are forced to comply with or isolated and forgotten...

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No one seems to want to listen or care, so it leaves those of us like myself, who to be honest could do with some good intelligent support.  The only support I seem to get is from non-ASD individuals telling me I have to be and act like them, but not really listening or understanding our real issues in life.  So the only choice for me is a never-ending fight for our rights, instead of being given a chance like everyone else in life...The biggest problem for most of us I feel, be it education, employment, lifestyle  or anything else is others trying to tell us what our needs are, without really including us or only if on their terms...!

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So what can we do when I continue to hear about discriminating and bullying, those of us trying to reach out and speak out.  It seems if not on other people’s controlled terms, if others do not like what we say we… for myself and many it seems we  get abusive emails, pushed aside, put down and/or even blocked from some sites... it shouldn't have to always be on everyone else's terms, how we think, speak out, do things and act.

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I am on many committees and so want to bridge gaps, help others understand, but continually feel some individuals from some groups while we agreed to disagree on many things, at times I feel like I am only listened to on non- ASD terms… continually being told “that’s not how we do things,  you cannot say that, you should not say that, you should not do that….” and it is evident certain people on many committees and groups can be at times very discriminative against me.  This includes professionals, preferring to just dismiss what I say, not listen if do not communicate in/on their terms... I feel that at times I am being sent to exile.  I feel like a token autistic individual most of the time, and feel it’s more a matter of others having to include us, than wanting to at times… where I live in New Zealand anyway!

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This of course long term is beginning to affect me mentally and physically; many do not seem to want to make any allowances for our needs or understand what real support we need.   There are, of course, a few brilliant individuals and ASD advocates here, the ASD community and of course my AsPlanet members on my forum are brilliant mostly and continue to give me the strength to do what I do.  But I am also aware many individuals do not get the support they need, let alone fighting for our rights... all fighting their own battles!

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So sometimes I do feel my only option is to remove myself from mainstream society, we have such a long way to go as a minority community, I do feel this has to be a worldwide issue as people are quite often in transit and can being differently minded can affect anyone whatever race, religion etc…  while the amazing strength from the Autistic worldwide community helps me stay  strong and here for you all, I cannot help but feel at times all the odds are stacked against me sometimes!

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Adaptability, but who needs to adapt the

most!   Sometimes the more I am my true my

self, the more some put up there defensives,

but with each reaction, I like to think long

term a good reaction for us all... real hope!

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