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Diagnosed later in Life, a need for knowledge, understanding and acceptance.... PDF Print E-mail
Written by AsPlanet.info - Alyson Bradley August 2007 / Updated May 2010   
Jul 11, 2007 at 04:10 AM

 

Spectrum-wise a 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 from 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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 At times I start to think of one thing and then listen to others, and the

 combination of those thoughts simply flow as one. To me difference  is

 no problem, simply my over  analytic mind likes to question everything,

whatever difference I may or  may not have, I see as a part of self… !

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Everyone is a unique individual, recognizing and being not always so easy and can be intimidating, especially if you’ve spent our lives looking for approval, trying to understand self, trying to fit. And when you try to be somebody else the best you can ever be is number two, so be yourself after all, and who’s more qualified?

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 i.e. “He wanted to conduct, but his styles didn’t work. During soft passages he’d crouch extremely low. For loud sections he’d leap into the air, even shouting to the orchestra. His memory was poor. Once he forgot he’d instructed the orchestra not to repeat a section of music. During the performance, when he went back to repeat that section, they went forward, so he stopped the piece, shouting, ‘Stop! Wrong! That will not do! Again! Again!’ For his own piano concerto, he tried conducting from the piano bench. At one point he jumped from the bench, thumping the candles off the piano. At another concert he knocked over a choirboy. During one long, delicate passage he jumped high to cue a loud entrance, but nothing happened because he’d lost count and signaled the orchestra too soon. As his hearing worsened, musicians tried to ignore his conducting and get their cues from the first violinist. Finally they pleaded with him to go home and give up conducting, which he did. Who was he? Ludwig van Beethoven. The man many consider to be the greatest composer of all time learned that nobody can be the master of all trades. "

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But often when we find the strength and get to understand self fully, we may change, but often those around us not willing to accept those changes, that I find extremely hard at times.

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Today yet another day and within the bigger picture of time seems insignificant in away, but if we make a small difference each day, maybe we can make a bigger difference in respect to our own time. Myself so much I want to do and seems so little time, I so need to stop procrastinating and get on with or duplicate original self.

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Another aspect of who I am as an individual. The stigma surrounding mental health often means many find hard to talk about, but I feel considering the amount that do have at some stage in their lives, if we all spoke about, maybe the ignorance surrounding different mind sets would change. I have bipolar simply one label of many, but as with anyone I am not a label but a unique individual like we all are.!

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As Those of us that face up to our differences, research and get to fully understand, are one step ahead of those that never do, as only by embracing who we are as individuals, not only helps us, but helps others understand the whys and what's of life.  I may be no expert, but I do feel all my neurological differences are somehow connected, including bipolar and maybe even an extremity of mood from having to live in a society that often simply does not work for me. !

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To me the bipolar label simply helps explain another part of who I am, my extremity of moods a lot easier to control now I understand, and to be honest I often find I am more creative when on a high or low and as use to do not really brother me as such... it’s the not knowing or understanding that causes problems, the same for all my other spectrum differences. But to face up and how we impact on others only enriches our lives and those that surround us.

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Those light bulb moments, when you know all that others have been telling you is so right all along and as I have found the most difficult individuals often teach us the most, the ones we run from is it because it hard to look at self. But sometimes its only when we do move on, we know what the problem goes away…

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We are different, but the same - what makes you feel like an outsider. ?

Like when I first meet new people the chit chat starts which is a little like acting to me, not natural anyway...that stresses me, then usually start to over process information and either over muddle and shut down or rant none stop on a subject that at times interest no one else but me... not always like this when get to know people, but often the reason I stick with like minded, as then understood and allowed and I can be me

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I do find asperger individuals at times over analyze, process look more into comments than others and often say the same thing in different ways, is it that we are at times so intently focused on our own need to say what we need to in our own way, do we misinterpret what none spectrum individuals say, I know I am misinterpreted at times.?

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We are all different, but all the same - I admit I feel I fit into this world more when surrounded with like minded individuals, I even function better because easy to be able to simply be, and then maybe I could simply focus on achieving, instead of feeling a need to educate the world to exist. The majority only those we surround ourselves with.!

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With me life has changed course when I was diagnosed, things just sort of happen, and advocating has become a real passion, almost like I have been guided to reach out somehow...and I so enjoy doing, I feel privileged and lucky to be able fully to understand and accept self and view the world the way I do now and so I feel I can no longer compromise the way I did before, simply grasp life with both hands and do..

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But at times I do feel we all can judge others by our own lived experiences in life, of course they are all very varied just as we are and maybe before we judge others, we should take time to get to know, to get to fully understand, because once we step outside our own safe worlds, we simply become one small part of the vast ever ending universe.!

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We start out in life just as and when we start to grow, so much information,

that does not always match, why do others stop my fun, slowly I am worn

down to conform, caged in - but I continue to grow and than once again a

need for my own space, a life time to reconnect, to discover, and maybe

like everyone else, simply I am another person with my own unique mind.

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As we age we gain confidence in self, are wiser and our knowledge can make a huge difference, to many living isolated lives and/or being labeled wrongly from a lack of real education and awareness, the world needs to know many of us are happy in our own way, when society allows and there should be maybe alternative living as we age.... as those traits of ours, that many over the years have tried so hard to erase, come back stronger than ever as we get older, and partly to exhausting to pretend and partly no reason to have to fit in to please others any more and like myself I realize when allow my different intelligence to be real, it opens up so many possibilities, in away discovering and being diagnosed later in life, I feel my life has just begun.!

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We cannot explain to anyone even in a day, as it's a life time of differences and as we learn and grow in away as we research more we are privileged to get to really know self and often not many none spectrum get to do that, society in general encourages conformist, so when we step outside of what the average person feels we all should be like, at times it may seem we have to over explain over selves too often, my choice these days is stick with like minded individuals, as others will only listen if they choose or want to anyway. But as we grow, embrace self and gain confidence others simply will have to get use to us 
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A huge percentage of individuals have some form of neurological difference and some of us simply are more intriguingly interestingly complex and the majority is only who surrounds you at any given time, that's why I stick with like minded and what is different to one is the norm to another... Would love to hear what each individuals feels makes them different, if at all - can cooment below, scroll down...

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A reminded we all have our own unique brain wiring, there are

different types of intelligence and as I have found the more I get to

know self, I simply am and no longer feel at odds with the world...

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I was only diagnosed a few years ago May 2007, once I discovered the word "Aspergers" I started to research intently and I basically wrote everything down, in away my own report diagnosis... I ask my doctor to refer me to a physiologist and he totally agreed with what I was saying, armed with loads of information...after speaking with a physiologist for just 1 hour I was diagnosed. Simply brilliant for me in one respect but at the same time many I knew there was more and so my co-morbid's complexities started to add to my puzzle and all at once at first seen to hit me like a brick...

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At first like a huge maze and had no idea which way to turn, the diagnostic criteria at times seems to over complicate, overlap and interact with each other and there seem no one knows all the answers as confusions in many fields I feel, many tick boxes that's hard for anyone of us to fit into... my simply version these days is that I am neurologically complex, which can mean intriguingly interesting or not, depends on societies perceptions.

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As a child crushed until broken, all that was needed was understanding, support and acceptance. Aspergers sensory wise the world often too much, Dyspraxia the most clumsy person in every room, Dyslexia what doesn't jumble, ADHD my mind continually on full power with no off switch, bipolar extremity of mood who knows where that will take me next!

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None spectrum there is a new species revealed welcome to our alternative universe, where we get to hear, see, feel so intently at times sensory wise all too easy for us to overload and shutdown, the way I process information differently makes it hard for me to relate to many, chit chat seems irrelevant to me and often... prefer my own thoughts so at times rant on alone.

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Many of us on the spectrum seem to have huge strengths, along with huge

weaknesses, recent test confirmed that to me.. the average mind from west

to east, mine from north/east to south/west. At times how I visualize I feel need

to creativity place... somewhere, as its hard for me to listen, focus to what

seems irrelevance to me, explain my inner mind to others, they simply stare!

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Another place to simply offload my thoughts
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At times it like my life is in limbo, on the edge of society itself, and how ever hard I try I can not quite fully cross the line... but I ask myself of why, in a way  I feel I will always be on the edge of society as is, I handle it so to speak by as much as possible trying to be myself and I am lucky at my age now able to back away from society to a point as too much exhaust me at times. But I have come to the conclusion that I can only be me and have found it easier since I have stop trying to please everyone else all the time, of course not easy, none of our lives are or will be until full understanding, acceptance and we are just allowed to be...

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To everyone who I feel I may have affected and those of you who have felt affected by my actions, I cannot be precise as not sure myself as the world and life itself has not always made sense to me in its present form, but I never intend to offend anyway and I am truly sorry if you have ever miss interrupted my actions!
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But as a parent I cannot help but wonder has my actions affected those closest to me, or how have others impacted on at times my misunderstood difference. Sometimes as children if unhappy maybe our only form of control is to refuse to do what others ask, but if we do why... in desperation to get heard, if we grow up at odds with the world not feeling understood we need some sort of outlet and sadly that is often refusal of food, a tantrum, self harm in a desperate attempt to be heard, to scream and not be heard by those around us can be soul destroying, listen as the consequences can be a lot worst.... so please listen
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As adults I feel we all need to look deep within and ponder what we know may not always be right, there is dimensions out there no one yet understands... We may be hard wired to think one way, does not mean it's always right. we need to be more open minded, as we can give birth and are often given a gift, a child but does not mean they will be like us, a duplication of self or want to be..... Change is uncomfortable for us all... we can all believe what we know, sense and feel but none of us are always right.... maybe I and others like me were born to question, stand alone and find answers that at times do not make sense! 

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Sometime I feel those of on the autism spectrum at times seem to function so much better, if we stick to rigid routines, often happier having the same people around us. Any change for me, takes me a while to adjust to, even takes a while when my own husband is home more during holiday seasons, I need a transition time for change, otherwise I feel like he is in my way, in my space, upsetting my routine, taking away my controlled safe world, it’s not that I do not want him around, even though I am sure I make him feel that way at times…. I just find the change so hard, as with people turning up unexpected, I may not open the door!.

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When I was working full time and had children this was an extremely stressful time for me, as I had to over plan everything down to the last detail, every night would over prepared for the next day otherwise just could not cope in the mornings. Whenever I go out I like to know a few days before, what time, where so I can over prepare this helps the day work, run smoothly, if have too much to do and organize all at once, my mind just goes blank, overload and can slow things down to a standstill, this will surprise those who know me, I am the one that thinks of everything!. This of course can get extremely stressful / exhausting and so as I get older I want to work be a part of the world more, but have to try and find ways, do things to try and keep some balance in my life.  .

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"I really believe Aspergers Spectrum Disorder is evolving so fast

only because of more sophisticated diagnoses, I think it’s always

been around and badly misdiagnosed for years and still is being,

it does not help with the hundreds of fad treatments & false hope".

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Being diagnosed in later life makes it no easier; it can feel like half your life has been a lie, a false identity.  I struggled all my life trying to make sense and then when the bomb shell hit, it impacted my whole life. At first shock, realization and sheer joy, as my true journey begins. I had an urgent need for knowledge, I so desperately needed to know more about "Aspergers" how it was a part of my whole way of being and how was it  I never knew up until, was diagnosed in my late forties. This new discovery was to change my whole perception and understanding of the world as I thought I knew it.

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As I slowly made sense of my social, language and learning issues, as well as concerns of restricted interest – all of which were inherent, the very core of myself, my center heart and soul was about to go on a rocky journey. Which was so scary at first, it’s like entering a dark tunnel... not so unlike my dreams as a child and not knowing what was there, dare take the next steps.

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I am now of course a very proud aspie, and hopefully my insight can help others take those first steps into a world still so little is known about. AS has always been there, but I have only just found it, it will never disappear and in fact is just a part of my many neurological differences which makes me I guess a slightly differently minded person from many, but has allowed me to view, sense and feel the world with such intensity at times, that I can only be thankful, that I am no longer lost and can now start to work with these differences, instead of fighting against the unknown.

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Others ask me to explain I do and continual to, but you have to want to understand and listen, read this book and another, as I have spent a life time trying to understand the average person and getting it so wrong, I also realize for you to step into my world, I need to help you see through my eyes, But as everyone is a unique individual I can only share my journey, and not speak for everyone. My family, social and work life may never be like yours, but I now have a happy balance which is "normal" and happy in my eyes. I feel its important for anyone with Aspergers Syndrome to understand oneself, so that they can use to their advantage and get support if needed, as our differences are a part of who we are.

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In spite of the fact that Aspergers was identified more than sixty years ago, there's still a great deal of information yet to be determined about it, such as a cause for the condition and also a cure. In fact, because the disorder was only added to the Diagnostic and Statistical Manual of Mental Disorders in its fourth edition in 1994, many people who were previously diagnosed with other conditions have been re-diagnosed as having AS.

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It manifests in various ways and can have both positive and negative effects. It is typically characterized predominantly with bad communication and social skills, obsessive or repetitive routines, and physical clumsiness. I would like to add original, maybe not the same as you - outside the box, one of a kind, do not push away, what you do not understand, really listen and you may learn.

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Because this disorder spent so long not being recognized, many adults suffering from AS are in need of assistance today. We can finally help them, as well as helping children with AS. Adults often ask, what is the point of being diagnosed after all these years? I usually reply to this I totally agree they do not need to be labeled or for anyone to know. But first being diagnosed can really help them understand themselves and make life easier for them, partners and families. As there could also be a genetic connection, by knowing you may not only be helping yourself, but maybe other generations to come.

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Being diagnosed especially as an adult is not that simple, as hundreds of people previously have been misdiagnosed with various conditions. Some people on the autism spectrum do have associated conditions and some do not. But one of the biggest problems is the misconception that people on the spectrum always have some sort of mental disorder, which is not the case.

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But generally the most common mis-diagnoses are: Attention Deficit Hyperactivity Disorder (ADHD), Oppositional Defiant Disorder (OD), Obsessive Compulsive Disorder (OCD), and Mood Disorders such as Cyclothymic Disorder, Dysthymic Disorder, Depression, and Bi-Polar Disorder. These common mis-diagnoses stem from an ignorance among many professionals about specific social and emotional characteristics of people on the spectrum.

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 While it's true that Asperger's isn't a problem with emotions or psychosis, by the broadest definition, Asperger's IS a psychological diagnosis, as are depression, schizophrenia, etc., so it is in the same category as mental illness, as well as in the same category as other neurolopsychological conditions such as ADHD, Alzheimer's, TBI, and Tourette's.

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On the insideHands%20let%20me%20out  looking out
There will always be diversity and differences in this
world, as we are all born as unique individuals, but
the important thing is to embrace these differences,
accept and understand, not try and change or fight
against. And those of us with ASD are as deverse
and different as those not on the autism spectrum.
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One thing that I truly believe causes many of us so much harm, is that many seem to think / believed that Aspergers is "mild" in regards to ASD. There might be many degrees of autism and Aspergers syndrome, but I believe it is a big mistake to believe that the less severe forms of Aspergers syndrome are in any way "mild" maybe in some cases less support is needed, but the untold damage without understanding can be very real, crushing self.

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AS may be invisible, hidden to many but it’s still there and very real, disability to some, difference to others. Many of us may of learned to change, adapt, conform but at who’s expense, usually our own, often such lows of despairing loneliness, lacking many social skills is unimaginable to many not on the autism spectrum, but for those of us that have lost of self identity, that invisible screen is very real.

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"I thought about recovering my child from autism, I realized that I wasn’t thinking so much about what they needed as what I thought I had to do as a parent."  a child of course needs to be allowed, accepted and understood at least by their parents, of course often ignorance and narrow-mindedness of others makes it so hard for parents to know which way to turn. I am a mother of an aspie child, have Aspergers myself and its taken me almost half a life time to find true self, of course we change, adapt as we grow, but I may never of known about ASD until in my forties but I never lost my autism core...
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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 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 which is the differently minded part, which to an extent feels to me many NTs (the average person) just does not quite get or understand. So I feel often the most important part of us the center, gets neglected, so it's no wonder we are often a little off balance.
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Surrounding the centre 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 others started with our core, the center - autism heart, forget the labels. Because if our hearts were balanced fulfilled and allowed growing up, as I see it. I feel a lot of the existing links in the web, may start to fade. I feel many of our 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.
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Those of us on the autism spectrum have some wonderful unique often under resourced talents, our quirky differences often keeping us on the edge of society. But some of the most brilliant minds have and continue to be on the autism spectrum, I feel its about time everyone embraced these unique talents and give us at least a chance, I will always have my autism heart how ever much you try and change or make me fit, a square will never fit a circle, so I cannot help but wonder why so many try instead of seeing what's right in front of them. If you really want to understand get down on your child's level and see thought their eyes, listen to those of us that have lived with being on the autism spectrum and continue too....

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I believe my undiagnosed AS mother did have other associated

conditions, but no one really got to the bottom of her problems, as no

one really understood her differences. That’s why I feel it’s so important

others know and really understand. I truly feel to of lived with a

undiagnosed asperger mother who never felt she belonged and

myself being misunderstood when growing up and always knowing

there was a difference, but not understanding why, until diagnosed myself

in my 40s, and what a shock at first that was. Hopefully by sharing my own

experiences, a life time of living and having Aspergers, I can unlock some

of the mysteries and explain my world, give a better understanding to all

and hopefully help some of you find who you really are.

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People with AS are not mentally challenged, or incapable of

caring for themselves. They simply face different challenges.

Use the support you need, but realize that you can have

a fulfilling life and successful future - the only real problems

we seem to continue to have is being totally misunderatood

by the NT's, but its simply we think one way and they think

another, our wires just get a little crossed from time to time.

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NEW%20harmonize

AF Bradley

 

One of the most important things to remember when

talking about Asperger syndrome is how different

each person is, to hear that a person is autistic really

gives you next to no information. The person's

language abilities, their ability to interact with others,

their behavioral  patterns all vary greatly, the

largest challenges asperger people face are

often being so misunderstood by other people.

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Autism Research Centre - Current Research

http://www.autismresearchcentre.com/research/project.asp?id=1

I have volunteered for this research, as think really worthwhile.

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Some families have Aspergers syndrome within and between

generations.  As with my family being diagnosed, I now

know there are others in my family, Some have now been

diagnosed (twin brothers son, back in England) and

others prefer not to at this stage. But being diagnosed can

often lead to the realization that in fact other members

of the family, could also have similar traits.

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The exact cause of Aspergers syndrome is not known. It tends to run in families, suggesting a genetic link, although scientists have not discovered a distinct genetic marker. I myself believe there is a possible genetic link, but also am very interested in the latest hormone research in that Asperger women/ mothers, there could be possible hormone abnormalities. My mother who died last year (which lead me to searching in the first place) had a very high hormone in balance all her life and even tough was diagnosed with bipolar, was never really understood. I now believe she had Aspergers like I now have found I have, which has already answered so many unanswered questions for me.

 

I myself also have a hormone in balance, and speaking to other Asperger woman have found so many interesting differences already, develop late, very boyish when young, tend to be happier around men, but still love being all woman, also extremely bright and find hard to mix, or bored with everyday woman conversations.. I have also found we seem to have some sort of physic awareness to be able to prejudge situations, a bit like animal intuition. I have so much more to say on this, just want to express this and see if anyway else feels the same, or just maybe understand a little more, make sense of and/or find of interest.

 

Aspergers to the untrained eye is a difficult disorder to detect. Because of this people often go undiagnosed or may be misdiagnosed as having attention deficit disorder (ADD) or some other condition. When meeting a person with Aspergers, a person unaware of the diagnoses might assume the person is a little odd, different or just have no idea. When younger children might seem a bit awkward and have unusual mannerisms, but it may be difficult for the person to pinpoint just what is "wrong" with the child. Why they are different and do not mix with their peers well, targets for bullying. Can also be sensitive to sudden or loud noises and can be quite fussy eaters.

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Living with a person who has Aspergers sometimes results in a drastic ability to be able to socialize, as Aspergers people often find, meeting new people small talk (chat chit) very difficult. If backed into a corner can become awkward, creating an uneasy situation. It can also cause a range of emotions that are sometimes confusing and difficult to deal with.

 

 

 

Moody%20Grey%201

Moody Grey AF Bradley

Some days are just for thinking

Tomorrow is another day!

 

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. Aspergers isn't a disorder that affects only the person who has been diagnosed with it—it can also have a big affect on their families and friends. Parents find themselves raising a child they never expected to have, especially after being told at birth that the child is healthy. Siblings find themselves living with a brother or sister who requires inordinate amounts of mum and dad's time and who sometimes embarrasses them in public. To top it off, it's often really hard to even play with the sibling with AS. Then, of course, there are the psychological effects AS has on both the child and family problems like anxiety, stress, and depression are common in families with AS.

 

People with AS will often take substances like alcohol or drugs to help relieve anxiety, stress. But because of their obsessive behavior patterns, can become a bad habit to easily, leading to a depressive state. Aspergers parents and partners can feel rejected, as Aspergers people often lack the ability to communicate their own emotional state, will often become isolated and alone.

 

At times, people might give you advice and criticisms which you find slightly patronizing, pedantic or unimportant. This might often cause you to want to rebel, but you could in fact be rebelling against the very things which are to be most helpful to you.

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 Anger and Triggers

 

One of the problems I have had in the past, is I seemed to push away people when most in need, when most want help. I have been trying to work this out, and think partly due to the fact that we like to do things in our own time and in our own way. I think quite often the trigger can be the closes person to you, as if you do not understand yourself how can anyone else.

 

Any sort of stress and / or change can be a big trigger. I was like this, could become unreasonable and aggressive, not sure at times why myself. But it was like at times I was on my own, could not understand why others did not seem to understand me. But since being diagnosed I really have changed totally, knowledge of the condition is the key to understanding and being able to be ones true self.


I never intentionally pushed people away. I think it was just at times needed to be in my own space. We really do need to let others know, otherwise we can end up arguing with the ones who want to help us, and I know communication can be hard with the norm, and at times I do feel it’s easier just to talk to myself, rather than be misinterpreted yet again. If not feeling like communicating verbally, I find it really helps to do via email, will usually calm situation down, for me anyway.

 

I have found what works for me, if need own space is to let partner, other family members know. Instead of withdrawing and excluding them, my husband will now instead of getting into an argument, which he will not win anyway, and only make me defensive, never good to back us aapies into a corner as will just fight back, which will trigger us into a situation where we completely withdraw. He has now learnt to recognise if need a hug or space, can be that simple. So a few deep breaths, stand back, do not argue and try and be supportive, you could be the trigger without knowing it.

 

The other thing I have found, if things are escalating it’s good to try and have less coffee and alcohol. I have always found makes me worse, I do not drink anymore and that does really help me, clearer head, helps me to see if a problem starting, cannot give up coffee, but no one can be all good. We really need to find ways to relieve build up of stress, the best one for me is long walks, exercise. Some people just need quite time, to recharge. But it is important to find what works for you, and let others know. The norm cannot read minds, even if we think they should!

 

Unfortunately people with asperger syndrome quite often can have depressive states, with high and low’s. This is often due to them feeling totally misunderstood and alone, as they see it anyway. If not dealt with at an early stage, can go on to become depressed and could go on to turning into bi polar, or other similar conditions. Of course not everyone will, and depends on circumstances, but just want others to be aware this is a real possibility. At this stage will need outside professional help, no need to be sad and lost on one’s own.

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Emotional Chaos, sensory issues overloaded, shutdown...

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The importance of early diagnosis: Because the condition of people with Asperger syndrome is not as marked as those with autism, they may not be diagnosed for a long time. This can mean that their particular needs may go unrecognized and parents may blame themselves, or worse still blame their child for their unusual behavior.

 

The wonderful thing about computers is having such a vast population using the Internet. Allows individuals with Aspergers syndrome, and similar conditions a voice, they can communicate with each other in a way that was not possible to do offline due to the rarity and the geographic dispersal of individuals with Aspergers syndrome. As a result of increasing ability to connect with one another, a subculture of “Aspies” has formed. Internet sites have made it easier for individuals to connect with each other. Helping to spread awareness, and a better understanding.

 

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No Reason
Sad moments
Want to cry
Negative
Thoughts
Build up
Overload
Cry inside
Confusion
Muddle
 Twisted
Tears full
No sense
No time
No end
Chaotic
Emptiness
Loneiness
Aleination
Breaking free
Release the flood
Just need to cry
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Diagnosed late in Life

First getting diagnosed is not easy, you have to revaluate yourself. I could not help but wonder, how could I have not know for so long, did I want to know, would it change me, make a difference – I could be wrong. That’s when I knew I had to find out, I needed to know. Because if I was I had to know, if it was real it had to be fact. I did not want to have to keep just presuming, and having to try and convince everyone else.

 

When you most want the help, it can be hard. It’s not something people tend to talk about, or know about. I feel too many professionals (doctors, psychologists, teachers etc) still are not well enough informed on Autistic Spectrum Disorders. But with more awareness than ever, this is beginning to change. If you decide to be diagnosed it really is your choice, this is something you have to decide for yourself. Take time to find out as much as you can, as soon as I did there was no choice for me, I knew at last this could be away of really being able to be me.

 

Far too often, it’s left to you, or someone else in your life to recognise the symptoms. If not diagnosed it often leads to being wrongly diagnosed. I did try and get help about 10 years ago, had no idea what if anything was wrong, just knew I was different, and had problems dealing with certain issues unlike everyone else. It was suggested I was depressed, but knowing this was not the case decide not to push the issue, as did not want to be put on anti-depressants, lucky for me never like to take any drugs. So still feeling confused and misunderstood, carried on dealing with my differences alone.

 

Anyway, once realise you may have ASD or similar condition is to find a doctor or someone who will listen. But before that I would advise read as much as you can about aspergers and associated conditions, and write down all the reasons you feel you have aspergers. I also put down differences as far back as childhood, because as we get older we change. The more understanding and supporting evidence you collect the better, as will make the next step so much easier.

 

Once decided on a doctor, arrive armed with as much knowledge and information as possible, as this will not only prepare you, but make the whole process a lot easier. Make sure you write down as much as you can, because as it may all be new to you, can be quite hard explaining to someone else. I was lucky my doctor did agree to refer me to a psychologist for an assessment first time. But I was very well prepared, as knew would be lots of little things I would have forgotten to mention otherwise.

 

When I arrived to see the psychologist was very nervous, as never been to one before and was not sure what to except. But defiantly did not expect what happen next. I was asked why I thought I had aspergers, thought they would be asking me the questions. Just as well I was well prepared, but 1 hour is not a long time. But she did agree it was quite possible I had all the symptoms! But once her draft report arrive at my home, which clearly stated I had aspergers. I just stood there, I was all alone and it’s a lot to take in at first.

 

After reading the first draft did not know if I should cry or jump for joy, to be honest I think I already knew at that stage and really it was a big relief, everything just seem to make sense and others would really have to believe me now. I was not making it all up, or crazy. I really was simply just different, and the strange thing was I had come to that conclusion a while ago. Use to say to one of my friends here in NZ “I do not know why but I’m different for everyone else” but I did not know then there are lots more just like me. It was strange when first reading the words I have aspergers – it’s like, all of a sudden after being one person all your life, you find out your someone else.

 

I had to send the draft report back 4 times before I was happy with it, not sure if wanted to delay a little longer or just needed more time before sent to doctors and official. The strange thing is the letter did go to my doctors, but they never called me. I guess after all there is none thing wrong with me. Except for years of conscious effort trying to be someone other than what I should be, has at times been extremely stressful. Still find it hard at times, knowing I suffered for so long unnecessarily, growing up and continually being told your wrong. Brainwashed by society and the media, to be someone you are not.

 

But now I’m so proud to say I’m an aspie, and to me it is now just a fact like everything else. But one good point being diagnosed later in life was that I really got to study how society and the world really works, not like the norm where there knowledge is acquired unconsciously. If you have never heard of aspergers before, then please do not try and stereotype me or institutionalize what you do not understand. I have had to spend a life time trying to understand the norm, just try and see things through my eyes for a short time.

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Something to think about

One thing to remember is that Aspergers Syndrome is a very difficult condition to diagnose, that’s why being more aware is so important. Unfortunately, so many people have and still are going undiagnosed, and some especially not so many years ago were misdiagnosed. Older people with undiagnosed AS, may currently be receiving inappropriate treatments, greater awareness of AS in the older population would enable better understanding and care of these people.

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As Aspergers Syndrome can also be found in conjunction, with other medical conditions, making it even harder to diagnose. Some common problems people with Aspergers syndrome are found to have include (but are not limited to) are: Speech Disorders, Tourettes Syndrome, and other tic disorders, Non Verbal Learning Disorder, dyspraxia, dyslexia, ADHD, ADD, Oppositional Defiant Disorder, Obsessive Compulsive Disorder , Depression (including Bipolar), - Generalized Anxiety and Mood Disorder, Anxiety Disorders such as phobias..

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hypersensitivity to external noise, forgetting oneself in front of the computer, ruminating things passed in previous days… Insomnia, most often complaining of diffuse difficulty in falling asleep. Until my husband found out I had Aspergers, he never believed I seem to not need or unable to sleep whenever, and unfortunately lack of understanding can lead to partners of AS people feeling neglected.

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And more poor co-ordination, clumsiness etc, eating problems including allergies, phobias about food, overeating, and ?anorexia (some cases), visual problems eg Irlens, health problems due to high pain tolerance e.g. broken bones or appendicitis being ignored for a long time by the person.

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By definition, those with AS have a normal IQ and many individuals (although not all), exhibit exceptional skill or talent in a specific area. Because of their high degree of functionality and their naiveté, those with asperger syndrome are often viewed as eccentric or odd and can easily become victims of teasing and bullying.

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While language development seems, on the surface, normal, individuals with asperger syndrome often have deficits in pragmatics and prosody. Vocabularies may be extraordinarily rich and some children sound like "little professors". However, persons with asperger syndrome can be extremely literal and have difficulty using language in a social context.

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Through life experience we gain intuition expertise,

intuition can be so strong, we think we already know,

but do we. Can over thinking lead to misconception!

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Mind Time (be good to your brain) - just believe it us Aspies need it!

A distinction is not often made in the philosophy of mind between the mind and the brain, and there is some controversy as to their exact relationship, leading to the mind-body problem. The brain is defined as the physical and biological matter, responsible for all electrochemical neuronal processes. The mind, however, is seen in terms of mental attributes, such as beliefs or desires.

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I feel it’s especially important for us apies to have mind time, reflect, top up call it what you will. Soak in the bath or hid in the garden shed, we seem to need our own space and time, cars recharge batteries, so why do some of us just let our minds get too run down, that’s when things can turn to mash! We are all continually told to look after our bodies, so why not our minds.

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Mind Time Day, try to take steps to free yourself of the past hurts and worries that continue to live with you. Start a personal ritual; write down your thoughts, to get out all your feelings. Treat yourself to a beautiful journal to give yourself a regular outlet for all your emotions, regrets, and worries. Don't push these emotions away. Harness them and move on as a smarter person. You can even Email them to me to add to site if feel will help others.

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Socializing for me takes A LOT of energy and find I can handle so much, I often feel I want more friends, but then get over whelmed, like them on my terms, in others words "can put them away and bring them out when please to" of course this does not work.
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I often wondered what it was that leaves me feeling so lonely at times "the empty void" but with me have found my extremity of moods cause this and if I focus on things that I enjoy during these times, I can be very creative and happy in my own way.
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Often expectations of others makes me feel alone, when what I think I want is not quite the case, as what the average person enjoys will/may never make me happy anyway. I guess up until now I have be pulled into wanting to be like that stereo type image that does not exists!
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I feel a part of the problem is that many of us grow up not knowing or understanding our true selves, until we do and know how to meet our own needs, we unintentionally try and fulfill that gap with what we perceive will make us happy, and often get it so wrong...

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Not understanding who we are can be sooooo frustrating and often we become angry, defensive, accusing and even complete denial is not uncommon, anger, frustration offer happen because we do not feel understood often even by those close to us, which can be quite alienating and lonely and there is so little support, awareness for adults here in NZ, but that is beginning to change.
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The thing that has truly helped me the most is having other likeminded people to talk to,  to help answer all the unanswered questions others can’t. Of course I realize it takes more than understanding myself to change, others have to also start to see our invisible differences and at least try and understanding. You’re welcome to join me on the AsPlanet forum: http://asplanet.info/forum/index.php - ask questions, chat, share, support, advice, join the aspie/autie community, and truly start to understand. I believe in promoting a positive imagine and help others accept who they are.

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In regards to professional help, I feel this is also important when you feel you’re ready, if you decision to get diagnosed that is, and if you do finding a good professional not so easy here in NZ, I wished I could give you a list, there is Dr AvaRuth Baker and I have only heard all good. I was not diagnosed by her myself (see my profile for more on my diagnosis), but as far as I know the only professional on the autism spectrum who does diagnose here in NZ. I have met her, but do not know her personally, so anything to do with her I feel best for you to inquire direct.

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 As for needing support or medication or not, that has to be your decision and your need to be assessed by professionals, I am not a professional but do have my own opinion and my own reasons for that, as we all have our own views (more on web site "Do not Drug Us - Understand Us"). I feel it’s important at some stage you take professional advice and decide for yourself all the options.

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True identity, understanding oneself and acceptance makes heaps of difference.... but having a connection with real people is vital for me and I have found this on line, as I have more control over when I feel like communicating.

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Many of us seem to suffer from not being able to stop thinking, now everyone thinks... thoughts are represented in a "language" sometimes known as mentalese which allows complex thoughts to be built up by combining simpler thoughts in various ways.
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My brains seems to process like a computer, when too many thoughts often goes into auto pilot - sometimes I wish I could pull the plug, still prefer not to override as often most creative when on full power.. the problems accrue when we no longer want to think, where is the switch!

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Quote: "Different subjects and different affairs are arranged in my head as in a cupboard. When I wish to interrupt one train of thought, I shut that drawer and open another. Do I wish to sleep, I simply close all the drawers and then I am asleep." Napoleon

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If like me I always give 110% to whatever I do, and often over focus to much on things, at times going a little overboard, so no surprise now and again need some down time, many of us on the autism spectrum have OCD traits, along with possible bipolar traits which I feel is just the next step, an extremity of not being understood. Maybe my worst point at present is probably being addicted to coffee, can think of worse vices. I have had like many of us worse additions in the past, but then I was lost and it was desperation to find my way, that lead me onto many wrong paths...
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As I see it the way we think and process information can be quite complex, even heard some say brilliant in our specialized fields, our obsessive tendencies push the boundaries - disorders such as 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!
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My biggest trigger is doing something that makes sense to me and not to the people around me - I need a sign "please leave me alone until I am ready" sometimes everyday things that are important to others seem irrelevant to me. It can be very frustrating when we see, sense and feel differently for most people; hence communication wise our wires often get crossed and jumbled.
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Meltdowns hard for all involved, and if your around someone it can seem like you’re walking on eggshells, walking through a mine field as we have no idea what will send us into the whirlwind of emotional upheaval in regards to meltdown. I know myself I can get so wrapped up in what I am doing, my journey. I do at times forget the impact I have on others, so it’s good for me to correspond with people apart from aspies to keep me balanced and always good to have one foot in the real world.
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The best thing anyone can do wanting to know more is to continue to read, research and learn from those of us on the autism spectrum. There are many books you can read and have heard a good start is Tony Attwood's book - The Complete Guide to Aspergers. But there are many books and many web sites, it takes time. Lots of book, suggestions on AsPlanet forum.

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I do realize of course, it has to be a two way process long term to work. Maybe you may not understand your partner, friend, family member, but it's often the same for us, what may be obvious to you, may not be to me. Some people take much longer to come to terms with things, partly I feel some see it as a reflection of themselves, especially if a parent they want their child to be like others, but no one is the same really... 

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But being differently minded, the only hurdle as I see it is understanding and acceptance of oneself. You cannot explain to others, what you do not understand yourself and unfortunately there is a stigma attached to the word "Aspergers" but that’s just narrow mindedness, which is changing....

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Right now I feel like I need to be reprogrammed, as it taken years for me to get it so wrong, and no one can change that overnight. But I am content in at last finding the true me, I no longer feel lost in a jumble of cross wires.

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Join in one of the many AsPlanet forum discussions and/or comment below

http://asplanet.info/forum/index.php?topic=1040.msg8934#msg8934

"Early intervention / diagnosis.. My take is if the child's happy and their is no real problem, let them be and develop in there own way. Far too often once they get diagnosed too many people start to intervene. It does concern me that many governments are thinking of diagnosing earlier and I cannot help but wonder who that's for. I partly feel society puts far too much pressure on what stereo type "norm" should be and therefore, finds it hard to allow differently able individuals, going out of their way to conform children before they have a chance to find self... YES bucket loads of awareness and understanding is needed in regards to asd, giving society, parents more insight and understanding, that's the only way anyone will ever allow and accept..."

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"Its all to easy to be offend by those we do not understand! Sometimes

when meeting new individuals I rant on about self and barely able to listen

to others, many think I am being rude when I am simply surviving the only

way I now how, if nervious/anxiety my mind can seem like a computer on

full power with the thought process scattered, taken away for awhile, even

blank. But all I need is simply time to readjust and helps when not judged!"

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User Comments

Comment by Guest on 2009-01-10 16:14:26
My son, like you, was born with an Asperger core. I know that, at 9 1/2, he has the same core that he had when he was born. I love him so much that I wouldn't change his core even if I could!  
I love hearing from adults with autism. Autism awareness can only come from people like you and others with autism, By posting online, you also give me examples to show my son since no one in our family has officially been diagnosed with any type of autism (although some ADHD.) 
Thanks  
 
 
I too always listen most to autistic adults and seek out their ideas and advice. I also know my son was born as he is. He is a 5 year old version today of who he was as a newborn. He isn't a person with a disease or disability. He communicates differently than I do, that's true. And sometimes that takes some hard work on my part. But autism is a part of his core personality. And I think he's great! Something I love is that when he reads the word "autism" he always reads it as "awesome." That's my boy!

Comment by Guest on 2007-10-15 20:36:19
: I totally agree with the part about being diagnosed and it changing one's life. I never really understood until I was diagnosed. It helped me self-recognize symptoms and correct them. The problem is that NT people don't tell you that you are doing or saying something weird until it gets out of hand and then they all hate you. Also, our lack of the emotion Empathy causes us to say hurtful things to other people without realizing it. 
 
Good luck with your site.

Comment by GUEST on 2009-01-11 20:26:21
Hi Alyson: 
I met you at the Autism NZ conference. I've just looked at this site for the first time: its really insightful. 
From the point of view of a doctor with expertise in ASD (but looking after a mainly general caseload) I thought I'd mention some of the issues from a clinician's point of view. I've seen a few patients with likely AS who have presented to me with something else. Most of these people have no interest in psychology, and no insight into the extent of their disabilities; any problems they have had may be blamed on poor circumstances, other people or physical illness. They are a quite different group from the psychologically interested people who self-diagnose. I'm reluctant to give these people a diagnosis unless requested: firstly its likely to be rejected, and if they are later in life I'd be asking them to change their whole world view.  
Thanks again for the interesting info, Sarah Abrahamson PS. also if you haven't seen my blog you may find it interesting, and I'm of course open to comments: aspiesontv.blogspot.com 
 
 
MY REPLY: 
Hi Sarah,  
First I do not see AS as a disability but a difference, and feel partly the reason some may reject is because of the stigma, lack of real understanding, awareness in general.... I am amazed as a professional you feel you should not tell people if you suspect, I can understand your reasons... I do not think it matters how late in life and to me its not a matter of "be asking them to change their whole world view." its often for the first time in there lives they can understand themselves, make sense, find true self... the problem with not knowing is that often many problems difficulties we have, is because we do not know.... I agree the word Autism spectrum is a shock to many at first, maybe should be renamed to neurological differences, one step at a time. I do not know anyone who finds out later in life wished they hadn't, many younger people seem to wish they never had at first, but this if often due to worrying what others will think, being called retarded or something... of course this is just ignorance of others and lack of real awareness.  
 
I do not not know if there is a right or wrong way to tell anyway, not being a professional myself, I know its not my place, but I am more than happy to help those that want to know more understand. 
 
Of course I can only share what I have discovered on my own journey and I am well aware each of us are difference individuals and each person has there own story to tell, the person I can relate to the most is Donna Williams, to be able to read and feel some one else understands, gets your inner most feelings, like no one has before is truly life changing....  
 
Ps. interesting blog, I think someone has started a thread on forum on subject, will add your link I like the idea of a professional assessing the characters traits! 
 
 
MORE COMMENTS: 
Comment by guest on 2009-01-10 22:45:25 
I note that there was also a time when some doctors thought that those with breast cancer and prostate cancer were better off not knowing. We buried most of them recently.  
 
As I have said before, if a goldfish presents at a doctors surgery flapping and gasping for air, sanity demands the doctor put the patient into their goldfish bowl, not anesthetize it's tail and lips to stop the flapping and gasping symptoms.  
 
How much longer must we go on be misdiagnosed, purposefully undiagnosed, denied knowledge of, or access to, diagnosis, etc.? Poor little fluffies that we are, we could not cope with diagnosis as it might mean:  
a) taking some interest in something more than mere survival  
b) thinking about why we are the way we are  
c) inspecting how circumstances, other people and illness affect our lives  
d) changing the way we perceive the world so we do not always come out looking like we are the messed up ones.  
 
One giant leap back for humankind...JG 
 
 
COMMENT:  
Comment by Guest on 2009-01-11 20:22:54 
Many thanks Alyson for this interesting and very indepth correspondence. I certainly agree with you that there are many issues which we are still working through in society- such as stigma, lack of understanding, which make it very challenging to be someone who is proud to be who you are as someone with ASD. But at the same time, I can see where Sarah Abrahamson is coming from. This is because diagnosis is a big event in the life of someone (and their family and whanau). I have met people who may (or may not) be on the spectrum- but they don't have a formal diagnosis- sometimes because they don't wish to have one, but also because sometimes they may be very happy with the way life is going for them and a diagnosis might not be of assistance.  
 
I absolutely agree that having good statistics around numbers of people with ASD is important for lots of different reasons. But I also think that one of the best ways we can use statistics such as numbers of people who have ASD is as a 'springboard' to look at how life is working (or not) for this group of people. That's why the Guideline is great in my view- because research around the numbers of people with ASD can lead to policy that can improve their lives.  
 
The only other thing I'd say is that I suspect that as people get to know more about autism, more adults will seek assistance and diagnosis. But we need to allow those people the right to make the choice to do that- as some people may have very valid reasons why they choose not to. MF

Comment by My post and replies on 2007-09-30 06:32:55
MY POST: 
Are you feeling ALONE or MISUNDERSTOOD - read on.. 
 
Do you do things out of character and not understand why, unable to explain. Know your different but do not know the reasons.Do you know your not depressed, but others think you are. Find drugs for depression seem to just make you worse. What to cut yourself off and just be sad at times. 
 
Well your not alone, there are lots and lots of undiagnosed people with aspergers, being continually wrongly diagnosed and misunderstood. I should know and it can be very frustrating feeling no one seems to understand you. Aspergers is just a different way of seeing and thinking. Best thing for me ever was to find out I had. Like so many other people I know, who have spent years of being told they need to change are depressed, when really they are just so misunderstood. 
 
Who would not feel depressed and frustrated, growing up to be told your wrong all the time, feeling like something is wrong with you when its not. My mother spent a life time of being wrongly diagnosed and on drugs all her life,and never was happy in this world, felt she did not belong. 
 
It was only after she dies that I started to try and find out why I was different, not wanting to take her path, and live a life on being drugged and controlled, I found out I had aspergers and that has totally, totally changed my life around. Thats why I am writing this, because I want to educate and help as many people as possible, really hate to think of any suffering for as long as I had too. 
 
If you want to know more, go to Aspergers Parallel Planet http://www.asplanet.info/ for 
AS Symptoms (Full Official Criteria)go to AS symptoms on main menu and/or think symptoms will be on this site.  
 
REPLIES: 
" this is very interesting, thank you so much for posting this, and I am sorry you have suffered so... neat site, will have to make time to check it out. " 
 
" Good grief, Charlie Brown: you may have hit on something. I have other learning difficulties and would have picked up on it in a child. I am too old for it to have been known when I was in school however many of the symptoms match. I feel as if you just filled the room with light and I was hit over the head with a two by four. I am going to check out the sight. The joke would truly be on my husband, he was against us taking in a foster child with it. Afraid we could not cope. imagine if he has married it. The jokes on him. 
Fantastic, not surprising and fits with most of my life. Thanks for the post. " 
 
" Hi Alz,I work with a boy (7 years old) who has Asperger's, and he is the light of my day! He is SO bright, and is misunderstood as well. I admire u for posting this; u are a brave soul; hiareth and i work with kids with Asperger's, autisim, etc. Feel free to talk anytime, sweetie! " 
 
" The site was very helpful to me. I don't have AS but a friend of mine mentioned it and now that I understand it a little bit better I hope I can be a better friend to him. It must be confusing for a clinition to detect though since there are so many symptoms that can coincide with other disorders. " 

Comment by Guest on 2009-01-10 12:51:54
Alyson Bradley, thanks & thanks--one thing my husband Jim and I often say about Charlie is that he truly, truly has heart and in the sense, if you will, of the word "courage," thinking that it comes from the French word for heart "coeur" and the Latin word for heart "cor." It's a cliché, but he has been and is my best teacher.

Comment by GUEST on 2008-04-27 20:19:58
I am twenty, 
We suffered many family traumas and I took them on my shoulders hiding my routines as best i could for a long time, making close friends but struggling to keep them. 
My mum would get so angry at my tantrums, lack of common sense, inability to compromise, bossyness, i am clumsy, i am too talkative, bore the listener apparently and don't understand too much too little space created, 
I went to my first pshychiatrists appointment last week he wrote Aspergers down as one possibility and later concluded 'maybe it's just you.' 
Confirming all my worst fears i have not slept well and researched Aspergers thoroughly, I now cannot stop feeling like i am no longer alone. It is not 'just your mad OCD, you don't think straight.' 
It's so overwhelming i have been searching for words to help people 'get it' for years, i just ended up feeling an inadequate burden, relying on perfectionism working so hard and feeling vunerable made me finally go to the gp, i just felt numb for so long and could happily go to sleep, if only i knew where to probe, to find the words to describe my essential difference to everyone else. 
I actually think although this man may not be bothered to diagnose me, he said, 'where would we start treating you!' I think he has saved my life. I'm actually not alone, there is the potential to meet someone like me! Or just hear from others that may think similarly and challenge some perceptions. 
I almost wish i had been open about my pitfalls earlier on, but i don't think i would have learnt so much, had the friendships i did or feel like the next part of my life may make slightly more sense to my mum than the first, who knows, just new information is enough.  
Thanks for helping to give me hope. 
 

Thank you for your kind words, it makes me happy that more and more people are beginning to understand, which hopefully eventually will lead to us being allowed to be ourselves from birth, instead of having to muddled our way though life so misunderstood and unfairly treated because of this at times. 
 
Good luck with your search and please feel free to ask me any questions, here, by email or on forum anytime.. take care warmest regards Alyson

Comment by GUEST on 2008-10-13 19:11:48
I would like to add one comment: People with asperges have the most kind, caring natures. Because they are different they understand your differences. My partner is very caring and intelligent. He sometimes overeacts big time but I guess this is 'not his fault'. One thing I note is that he cannot see your intentions, reasons nor when you are sad or hurting but sometimes offers amazing in sights. Any change can be a trigger his 'anger' and meltdown. I am the trigger - he sometimes thinks I am criticizing when I am not. I may just be questioning him or offering some advice or idea. During these times I sometimes feel like leaving and that I cannot cope. However I cannot leave as there are so many positive things that I would miss. 
 
Reply: 
Thank you so much for that, if only other people would understand us as well as you, other people do often cause our stress, not there thought, its just we our "NT and AS" world seem to be viewed differently and our wires cross, I often over react in some people eyes, but then what affects them/you, is not the same for me....

Comment by Guest on 2009-01-30 16:53:36
This is one of the most insightful, informative web sites I have read for a while, even better than nearly all the books I have read, deserves an award. Keep up the good work and thank you


Last Updated ( May 05, 2010 at 09:03 AM )