asplanet.info

North & South Magazine

Russall Brown you tube discussion with deputy editor of

North & South Magazine and others, and my online interview

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An insight form a paragraph in North & South magazine I wrote “it’s like having a unique window, an insight into the world....” the full article to be discussed more by Russell Brown TVNZ discussing factual coverage and the fictional depictions of Autism Spectrum Disorders and how both can affect the treatment and perception of those with the disability and their families.  :http://www.youtube.com/TVNZMedia7#p/search/0/Ckb4tpa5mxg   I thought in general a good overview of Aspergers and glad they took the time to do and help raise much needed awareness and hopefully help open much needed discussion. I also would like to thank the writer, North & South deputy editor Joanna Wane, for being so open minded and allowing me to use the question and answer session between us (see below) as I feel will only benefit and help others.

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 To read full magizine article need to buy North & South NZ (April 2010)

Below is an interview online session with myself and the deputy editor of

the  magizine and while not a lot of what I wrote was mentioned, I like to

think I did have an influence and that she listen and understood that

bit more, as I feel it showed within her interview with Ruseell Brown etc...

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(Joanna) In he Press article : http://asplanet.info/index.php?option=com_content&task=view&id=32&Itemid=67   you talk about Aspergers as “the gift” despite the fact that it has made for a challenging path through your life. Can you explain why you look at it that way? "I have a wonderful gift for being able to see the whole picture, but that can complicate things. For instance, if I'm told about a new procedure, I can usually find any error or possible changes it needs straight away…."

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(Me) Gift maybe the wrong word to of used, but this was at the start of my journey just after being diagnosed with Aspergers. But being on the autism spectrum is often more than having one diagnosis, we often have more co-morbid's and it seems the more we have the more difficult often it is for us to fit into main stream society. But understanding all our neurological complexities etc... Can be a long process, to be able to fully understand all our differences that takes time. But I guess maybe "gift" the word I felt appropriate at time, but that was a few years ago now and I am now at the point where I fully understand and am able to accept who I am an autistic individual.

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I guess I would now say I do feel privileged to view the world the way I do, it’s like having a unique window, insight into this world. Aspergers wise we seem to have a deeper connection with the world around us, we focus intently often on the smallest details, we see patterns when others may not notice and a world within a rain drop. Having Dyslexia I am more visual and somehow it has always been easier for me to be able to see the overview of things, I also have extremely fast processing skills which means when most are discussing point one, I am already at point 10, the down side a lot of what people say seems irrelevant to me at times, more interested in my own thoughts and world. But have in the pass worked on streamlining of major computer systems in a central London Council's, writing manuals, processes comes natural, hence relatively easy for me to of set up my own web site and forum AsPlanet.info

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To me I do not feel we should say gifted or special children, as all children a gift, and has something special about them when born into this world, to me now we all simply have different weaknesses and strengths and varied types of intelligences. The same with the word disabled, maybe the “dis” part should be removed and add instead differently able as to me society the only disabler.!

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Being on the autism spectrum we are as varied as those not on the autism spectrum, so this varies greatly depends on many aspects, but to generalize some of the things that distinguishes us, just a few words that come to mind in my opinion, which of course vary greatly: Honesty, genuine, dependable, integrity, reliable, loyal, trustworthy, non judgmental, free of many prejudices, sensitive, compassionate, caring and very accepting of other differences. We pay attention to detail and often notice things others may miss, will stick to the facts if feel others are wrong, we have principles. We can be a little over enthusiasm and have a great need for knowledge which often may seem to outsiders obsessive research. Of course this can lead to all sorts of talents when encouraged, as often interesting, complex and intelligent, intriguing, creative in our own differencing ways, an intense passion for what we love doing and for some of us at times feel we are ahead of our years in some respects!

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Autism never boring, as autism spectrum conditions are illusive because they are not identifiable by a common trait or behavior and no one strategy works for all of them. We have ability to love totally, unconditionally, live in a moment, less materialistic. We can be in our own company for hours and not feel lonely and have great conversations with ourselves. We were born to think "outside of the box" push boundaries, chase new ideas and concepts with a passion at times a little obsessively but often that's what leads to great discoveries, we often open new doors for non autistic individuals, and even though the characteristic traits of autism can make life difficult and uncomfortable at times, for those around us we are often happy in our own way, many autistic individuals have been responsible for some of the world's greatest achievements throughout history - intense focus and potential to become leaders rather than followers. .

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Should society be looking to “cure” or prevent ASD? What would be lost if we could?

To me it’s not about curing or fixing its allowing, educating, raising much needed awareness in general, embracing and understanding our different strengths and weaknesses, and supporting our varied needs  and there are key times like with any change transition, we often need extra support, understanding and time. This also of course depends on our many co-morbid’s which can be vast and those not on the autism spectrum of course can have such as brain damage, mental illness etc. let me explain more.

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Apart from being on the autism spectrum I have many co morbid’s  / associated conditions, in fact a whole list, not sure anyone has it right, including me. 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 the core of who we are, which to an extent feel many non spectrum individuals 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 neurological associated conditions, co-morbid mental conditions (or misunderstood difference), environmental , cultural factors often are 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, would start to fade, so no it’s NOT about curing or fixing we are not broken, but like anyone our varied needs we often need support with.

 I do 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. Not being diagnosed or understand can be damaging, causes all sorts of problems and often can be wrongly diagnosed under the mental health system or even lack of support can cause us additional problems. Time I feel to embrace the unique individuals we are, otherwise all the positives may be lost mentioned above and I feel would in fact hold back progress of the world in many aspects of research, technology and other specialized fields of work.!

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From what I can work out, there’s conflict between the medical community promoting only evidence-based therapy versus the more alternative biomedical approach (everything from diet and supplements to chelation therapy and removal of amalgam fillings). Then there’s the anti-vaccination lobby which still seems convinced autism is caused by the MMR vaccine and/or toxic overload. Parents of ASD kids must feel bombarded! What’s your opinion on the validity of all these claims?

Unless individuals have a noble prize or highly recommended specialist research i.e.

Autism Research Centre : http://www.autismresearchcentre.com I tend to ignore, but the amount of hard sell fad treatments to the autism community I find personally quite horrendous, when often unable to afford because of many other cost of having children on the spectrum and the parents often also on the spectrum and employment for spectrum adults extremely low, this I feel is wrong and has more to do with attitudes in society. Common sense comes to mind good healthy living, eating, exercise does not have to cost and as for things like special diets for autism wrong I feel, as adds pressure to families unnecessarily, yes if they really need a gluten free diets that is different, but anyone may need on or off the spectrum and if really need would be sick if didn’t have correct diet, let’s leave that to the real doctors to say if needed.

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I am more than aware some people really believe vaccines etc... cause autism, personally I do not, as I feel I was simply born different, neurological wired differently and its real understanding and awareness that's needed and for others to accept and allow many of us just to be. But I am far from an expert and would rather promote awareness and understanding and listen to research once fact. We are all entitled to our own opinion and feel we need to respect each other’s, as in a way we are all searching for answers to make sense of many  unexplainables of our own in life. While I like to keep an open mind, yes research needs to be done for progress, but would rather not directly point the finger, blame autism for misunderstood differences, unknown.

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To me most a lot I hear about Autism all hear say and theory and not fact and many things such as vaccines, diets I feel we need to compare and research for everyone, not try and explain away a difference by attaching it to a community of people that are venerable already. As I feel such passion and energy directed at supporting and embracing those on the autism spectrum would make the biggest difference, we are real people. .Each and every parent has a choice and we all have our own views, but one thing that gets to me is the fad treatments and all I stay think twice before you give a child something untested, maybe test on yourself first! To me the most important thing you can give any child is time.

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I also feel time to STOP blaming vaccines or anything else for a difference many of us are happy with, is it NOT my thought non autistic individuals do not always understand us, I have been given a unique window into this world and so thankful for that... autism goes back generations in my family and years ago there were no vaccines as today!
I so wish individuals would stop finding fault in us and start to understand, embrace and allow... many individuals on and off the autism spectrum have vaccines and some if on the spectrum or not may have reactions to vaccines. But fact more babies die without vaccines on or off the autism spectrum!.  All I wish to add to this is scare mongering is dangerous and I have no idea why so many parents, individuals think they are scientist all of a sudden! "  .

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The neuro typical world doesn’t seem to be a good or easy fit for people with ASD – what needs to change?

One word is needed ATTITUDE – I feel it’s about time everyone started to rethink autism, as most spectrumwise individuals I know the only problem for many often is society as mostly to me are compassionate, intelligent, caring individuals - So maybe time to look more at the non spectrum individuals and the reason for their continual discrimination and prejudice, because at times beyond me. The stigma like a designer label, no one wants until popular and I am amazed when others pat me on the back like a sick animal and give that nod and I wonder what’s wrong with them?  What are we, a herd of animals? Why do we have to be the same? Even animals have the luxury/entitlement of having different personalities and traits.

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I feel a national campaign by those with lived experience is needed, as we were the children of yesterday and many of us continue to struggle while many do not listen, the cultural here unfortunately in NZ in many places is fix the individuals, it should be about embracing and understanding our varied and different needs.  Because I feel as uncomfortable as autistic individuals often make some non spectrum individuals feel, our positive traits are vital for innovation/societal growth. Parents and adults alike need the support and understanding long overdue, it’s should not all be about funding, we are talking about real people and real lives.

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There has been and is a lot of time and work gone into the Autism Spectrum Disorder NZ work program -For updates and download, request on the NZ ASD Guidelines see link below: http://www.moh.govt.nz/moh.nsf/indexmh/disability-keyprojects-asd-guideline-updates and many individual have taken time to help put this together, apart from myself, others on the spectrum such as Jen Birch and  Matt Frost etc… Many know what needs to be done, all been said time and time again, real funding and real action is what is needed, enough talk.

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There’s a lot of debate about whether it’s valuable/important to be diagnosed – what’s your take on that?               Let just say I did suffer once not from being on the autism spectrum, but from not knowing.... discovering Aspergers and all my neurological differences gave me my life back, the best gift of all. As for many autistic individuals often it is the social “norms” that causes the greatest difficulty. Perhaps it is more logical to strive... for people to know themselves better...not just for early diagnosis of "differences", but also personality, strengths and weakness...knowing and accepting...

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Many doctors do not diagnose adults in some places, the consequence of this many searching start to question self, others do not accept and they stay in no man’s land, leaving them uncertain of self and in fact many while searching feel often in a void an empty space, and simply know something s missing, but many without validation do not feel they quite fit anywhere and unable to be part of the autistic community, of course they are always welcome. Many are pushed to the extremities of society and then when they hit out in frustration, they are simply alienation against often more, and I feel society often causes much of our anxiety and stress, but often do not even really listen.

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For me being diagnosed even so late in life was the best thing I ever done, just made so many things make sense. But at the end of the day I feel it really has to be an individual choice to be diagnosed or not. But I do feel it’s important first to validate us as an individual’s, another reason accurate diagnosis is generally a good thing, in case you don't have Autism, but something else, it affects what you can do to help yourself, although there is a big overlap between AS and several other conditions/  intellectual learning differences etc... but many of us when we do not know end up being the chameleon, mimicking, whatever our surroundings are and often not very successfully.

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It is helpful for family and friends if they are interested about finding out things for themselves. Also generally as we get older we can get more set in our ways and feel it’s vital our differences are recognized so that others can fully understand us, how we impact on others another important factor, because without knowing, we do not know. I also know no one would of believed me if not diagnosed, others would just forget about, and we do have to remember who we are in the world impacts on others, far too many people say they are on the autism spectrum and do not get diagnosed, which has a huge impact on the statics and the support we may or may not receive long term.

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Down side it costs, and not enough good professional to diagnose. But it does make me sad that so many people choose not to be diagnosed, why I ask myself and feel it is still because of pressure from society in general, the stigma. But I feel worst not to, simply then left unsure…. And I feel  we need to speak out and be proud for the next generation, that’s why I speak out, my voice one of many I know, but the more of us that do the easier for others I feel, our varied views need to be heard.

The Labels can be a down side they stigmatize; they can put people in boxes - and people don't fit in boxes. But labels can also bring freedom, community and understanding. And with good Knowledge it opens up our worlds, that often in parts can be closed down, knowing and understanding allows us to accept and be and for me now I have the confidence to fully view through my own window, which never understood fully not so long along, it’s like parts of me had been shut down, doors closed - so to really know is simply wonderful.

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Are your sons on the spectrum and have you had them diagnosed?

Let’s just say my older son is, but an extremely intelligent child and does not have many of the co-morbid’s I do and also he has me to fully understand and allow, so he has fully accepted his differences and has no problem and happy for me to put this, he understands his different intelligence and like with any child any issue we deal with as and when. And to be honest I cannot imagine discussing my spectrum child info. all over the place in dept, I rarely say much about him, except the odd positive now he is old enough to decide and only when he agrees. Do I advise he to talk about, not really he does not need to all the time, I do because I am advocating for change.

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Of course I realize there are many children who so badly need so much more support and even if funds available, good support and services not. As I also see many of the neurological complexities under the bigger autism umbrella i.e. Dyslexia, Dysprsixa, ADHD, ADD etc... and in fact have heard about 40% of all school children have some form of neurological different the list huge, so I find strange that the government will fund Dyslexia but not all the other neurological complexities, as often they overlap and each child has more than one like myself. But when we look at all the differences in the world, is there a majority, as that’s only who happens to be around you at any given time..?

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Asperger’s seems to be “in fashion” – TV characters on Shortland St and Boston Legal; Hollywood movies; and now it’s the subject of Jodi Picoult’s new book (due out in May). How do you feel about that? Is it helpful to raise awareness or is it hijacking ASD for entertainment? Some people appear to think Asperger’s doesn’t really exist and is a modern manufactured syndrome created by parents to explain away their kids’ bad/anti-social behaviour. ?

First I wouldn't say in fashion, many curious of the unknown, I do not know anyone wanting to acquire the label.  I feel it’s more because of the lack of consistent real awareness, understanding and education worldwide, its open to all sorts of speculation, in some parts no real fact as mysteries as the universe, that is what I feel makes it so interesting to many and of course the growing numbers being diagnosed, people want to know. Do characters help raise awareness some do and of course some cause more harm to the autistic community. I think knowing there are individuals in the world we can all relate to helps more, like Steven Spielberg, Ladyhawke and feel if these individuals spoke out more that would truly help make a real difference, along with individuals on the spectrum being more included generally in the media for the right reasons..

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As for being  “a modern manufactured syndrome” sometimes I wonder if the ones that ask this are the ones questioning self, or simply not really understanding.  Those of us on the spectrum know only too well, many until they discover at times it’s a little like feeling a stranger lost in a world where your meant to fit, but do not quite connect and sensory wise, with too much input we simply shutdown from a society and the world that often would rather look the other way, it’s easier. 

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But how do we explain in a few sentences, do we need to justify, it is difficult and hard to accept that I even have to explain anything...like I am guilty of something.  But for many even when we are diagnosed the first step to a long process of understanding, as everything and aspect about us is that bit different, like out of line with the majority. But if others do not listen every aspect of who we are will continue to be impacted upon, is impacted upon from when we are born, a small example of this:

From when born not quite connecting, not understanding and being treated text book style has to have an impact long term, as even sensory wise can make us unsettled. As a young child I was seen as a loner, difficult, pushed into many situations that were uncomfortable to me 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. As a school child I entered that huge empty echoing place, with so much noise I could not hear, I could not focus, I dare look others may laugh. What the other children enjoyed and talked about made me feel more of an alien. 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. 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 my world within this world my safe place. As an aspergian a breath of fresh air, like for the very first time in my life I could breath, allow myself to be myself, understand why I am, still having to deal with the after mart of living most of my life confused. So now I reach out to those still living In the shadows of life itself and I so hope no one else has to see the world as I had to for as long as I did. That’s what needs to change.

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Alyson Bradley General : I am a Autistic mother, wife, sister, friend – officially diagnosed with Aspergers, Dyspraxia, Dyslexia, ADHD, Bipolar and who knows what else... I was born and worked in London for many years and now a proud Kiwi as live in South Island, New Zealand which I love and has given me the time and space to get to fully be able to understand and embrace who I am and now quite happy being on the autism spectrum and with my co-morbids. I see myself simply as having a different intelligence, unique like everyone.!. I have set up my own world wide web site and support forum based here in New Zealand for those of us to share and support each other with varied neurological complexities, differences and can also be found on face book where I give general insights as "Alyson Bradley AsPlanet".

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Maybe it’s you : Do you ever feel at times when you take a step, society pushes you back 2. Do you ever feel others understand you, but do not in some respects at all, do you ever feel your unfairly treated just because, for no reason at all. Well maybe like me your differences make life more interesting to say the least at times, simply being uniquely autistic me. I should be accepted (not tolerated) with my Asperger. And so should everybody, regardless of their differences. As long as you don't hurt anyone, what's the big deal anyway.. Do we say non spectrum are high, low or anything else NO says it all really, myself proud to be an autistic adult.

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I use the word autistic because I know people who will not even say the word, I do feel I have a different insight into the world and have no problem being autistic or being called that, but of course it’s not what or who I am, simply a unique individual like everyone.  I read and pick up other peoples senses quite intently, which in turn affects me not always a good thing... but my very core, I call my autism heart as it's what makes me different, but does not define me. My version on life, the world and how I connect may never quite be like non spectrum individuals, but personally I like that about myself.

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Aspergers like a friend as it has given me the confidence to allow myself my differences and the courage to do things my way, before I use to question, be questioned and have no answers... but now I simply can smile and say "please don't take my friend away - Aspergers". But I have found when we change gain confidence in self it does not mean those around us do, accept or even want us too, so maybe we should start to question why others feel they have a right to question me or you,?

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When I was diagnosed I could get advice from someone who knew less than me, they had not lived my life, hence on my own journey my web site and support forum grew and if anyone has no cue spend a day and read my web site Aspergers Parallel Planet and the many others sites, as so many wanting to share, and if need of support your so welcome to join AsPlanet support forum where others do understand and where you can be yourself and be understood, that’s what’s helped me the most having like minded individuals who understood and in away continues to help validate who I am.

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And so I will leave you with but one thought, criteria of endless possibilities - the conundrum to large, endless as we are all different but the same, not only are we all unique, also the way each of us views others differs. And apart form types, personalities, intelligence an endless list, of neurological and other reason, like straws in a haystack and even ...each description each of us has varied view and perceptions on.!

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