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My differences invisible, but very real to me, I see and hear you so remember me... PDF Print E-mail
Written by AsPlanet.info - Alyson Bradley - March 2008 / UPDATED May 2010   
Mar 05, 2008 at 03:31 PM

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May 2010: In the Mix - the centre of the spectrum maybe a variation of differences. Let me explain myself neurologically wired differently, sensory wise I sense the world differently, I am so in tuned at times with the world it’s like surround sound, intellectual learning differences which vary greatly, but really to me a different type of intelligence, mentally minded differently possibly an extremity of feeling at odds with the world. But for those of us who have varied differences I see as the inner core, those with less the outer and including many other differences as the circle widens such as highly sensitive etc...and then on the very outer circle those with no difference at all and so isn't the real problem those on the outer circle not understanding the inner circle.!!!

 

And of course there are many names for many differences gifted, no idea why, many of them seem somewhere nearer the inner circle, and anyway every child a gift to some extent. Is anyone disabled, or is simply society the disabler. I may have a disorder to you, but truly I am simply different, special another word, are not all children special in away and should not we simply have varied types of learning styles and as someone said in my last thread and as I continue to say we are all human after all. Should their even be a autism spectrum, non spectrum. Maybe simply a spectrum of varied differences, that of course is the heart of who I am as a individual, but many on the spectrum need more help with their co-morbid’s and the autism part understanding because when we have a list of differences were do we fit, I feel their need only be two spectrum's -one to include all sensory, neurological and intellectually differences and the other mental differences as can be more complex, but still with a clear connection. Because otherwise like myself we end up trying to fit all the pieces together and belong nowhere as such and those of us in the mix often find it that bit harder to fit into society in the first place.

 

 

The puzzle of life at times makes no sense, forever ending

with missing pieces, in part pieces have been stolen, cannot

find, cannot comprehend, disconnected and broken. Where,

 why, what and when, maybe an impossibility, a mystery,  but

life itself  is what we make it, how we create it, embrace   it,

take it and own it, maybe time to mend.  We all have our own

perspective on the world and varies as we do. Many feel a

disconnect with society and I did until I got to fully under-

stand self, given up trying to fit in as such. What continues

to help me is doing things I love, in my our zone. (May 10)

 

 

 

When we start to wonder - how could I have not know for so long that I was that different, I have always known I was not like everyone else, but over the years got use to me, but with each new label it seem to stick on me as a reminder and made my differences more real, each diagnosis without a hesitation as if so obvious to everyone else, so why didn't I know until now. ?

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I guess I now accept myself for who I am and my diagnosis doesn't change that. But of course it helps ALOT being able to fully understand self, gives reason - then the only problem being others often don't get me and harder to compromise self than before. And at times it can seem like a waste of time trying to explain unless to those wanting to know, because many say ok and then forget.

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Some times I do feel it’s like being in a parallel world I see and want to do things my way and that works until I step outside my own imposed safe boundaries, where I am allowed and then the dilemma do I pretend and wear a false smile or be myself, of course I can be no one but myself and then so often others back away. Mention my list of neurological differences the ignorance amusing at times, while at the same time can be extremely frustrating, if another individual gives me another silly unknowing nod, even worse that pity pat I may scream.....

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I do feel we need to remember we are all humans and of course we have many similarities with those not on the spectrum. But if everyone was the same, everyone would understand our differences of course not the case. And some may seem not  feel as different as others, maybe less co-morbid’, and/or if have been embraced from when younger easier to fit partly . But I do feel the spectrum is bigger than many realize and should include the many other neurological mental, intellectual learning etc...  differences on the outer circle and then maybe we would be the majority - different but the same as I say... but the very core, those of us with as I like to say autistic hearts the very core of who we are, definitely I feel a big difference from those without.

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But the web of being on the autism spectrum with all its neurological differences, co-morbids can be quite complex and I have many and they seem to overlap and interact, I often simply say I am neurological complex as I am and have a combination of differences, the important thing I feel is understanding, so we can allow and accept who we are individuals, as on or off the spectrum we are all different,  and there are many other factors to consider, environmental, cultural, different personalities, different types of intelligence etc… So if you want to know, I would see a professional, who if possible specializes in neurological differences, finding a good professional that understands all the complexities not so easy.  As for me it’s been a long process, and at times it seems ever growing list of diagnosis, but without I feel I would still be grasping in the dark. (written by AsPlanet March 2010)

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Labels help us explain some things about ourselves, as for

doing things like others why should we, each of us can

only be ourselves, I think its society that needs to change,

be more accepting of all the varied differences in the world.

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The Diversity of the Autism Spectrum

My differences invisible, but very real to me, I see and hear you so remember me...

If I was in a wheelchair would you still discriminate against me the way you do now!

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Who does it affect, it has no class or race barriers, its invisible and among us all. Except we often keep the fact hidden, to some it's a shameful secret that's if we know!. I am intellectually disadvantaged, have various learning disorders, co-morbid's and yes I am on the autism spectrum, you could say I have an invisible disability, but I do not see myself as disabled, society my only disabler.?

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At times in my life I have often wished I was invisible, it can be so hard continually being at odds in this world. I have spent a whole lifetime being on the outside and so badly wanting to come in, but never knew how until now. And still it's like others often want to try and fix what is not broken, instead of really trying to understand because that takes time.!

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We are all different - but the same!

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Before it was like being in a time capsule, but I broke out and made sense of Aspergers and found my real self.

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As a child shy, awkward, so, so clumsy, in new situations, my mind which seem to work like an express train and the words and thoughts became so muddled, leaving me no option but to stay silent. Otherwise, my words would just jumble out in chaos, leaving others confused with a blank stare. Then came that knowing and unknowledgeable nod “poor child”, what did they know, just that I was different and did not fit into the neat little stereo type mode, where as I was left wanting to die inside disappear from being me.

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Growing up it felt like I had some dark shadow over my shoulder, close behind affecting my every move, with no clue why. Not fitting in, I always felt like the odd one and was continually left out. Why was I the one others like to bully, school like my home life was a living nightmare, but I am a survivor and have become stronger, but it has taken me far too long.

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Work wise I jumped at the chance of any job, someone actually employed me, I was so grateful, naïve, would I ever be good enough. With no confidence, education, emotionally confused, socially inapt and no clue to my differences.

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When I first started working in London, I found even looking at others painful. Over the years I trained up many people, which I knew I was as good as or even better than. But often had to sit back as they went on to be my boss or even do better, leaving me always very empty and frustrated.

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Being diagnosed with Aspergers and many associated conditions, has helped explain why I always found courses, meetings and social events quite dramatic, and change almost impossible to deal with. I ended up being the one every one remembered for all the wrong reasons It is a known fact that Asperger people find change hard, and will stick to very stressful jobs, even when very stressed and not happy.

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I had huge problems when it came to being interviewed, I just I fell apart. So it was such a relief when one of my ex. bosses after viewing my web site recently wrote:

“I felt really sad when I read the bit about your work experience and especially about interviews. I remember the interview you did that I sat in on and was really puzzled about how you came across - as you say you knew you could do the job, we knew you could do it but it wasn't coming out at the interview. Now I have been reading what you have to say about AS I think I can begin to understand.”

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" Consider the following four dead-end kids. One was spanked by his teachers for bad grades and a poor attitude. He dropped out of school at 16. Another failed remedial English and came perilously close to flunking out of college. The third feared he'd never make it through school--and might not have without a tutor. The last finally learned to read in third grade, devouring Marvel comics, whose pictures provided clues to help him untangle the words. These four losers are, respectively, Richard Branson, Charles Schwab, John Chambers, and David Boies. "

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I think one of the hardest parts for me, Is knowing I am very intelligent, I have a wonderful gift for being able to see the overall picture of things, and that’s why doing things like setting up a web site on my own is quite easy. It can be so hard not having a education and until recently I have not had the confidence to be myself. I have had to spend a life time of proving to others I am capable.

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Meeting new people is one of the things I find extremely hard. I do not do small talk and of course what is it most people first say “what do you do”, “where was you educated”.. how do I begin to do that when parts of me and my life I never understood until now.– How do you tell others who you are, when inside feel like your lost in the ocean drafting.

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I now feel like at last I have been saved, but would not wish my journey on anyone, it’s been far too hard and painful at times. No one really seemed to understand, believe in or has been willing to let me simply be me. Growing up and not knowing is a bit like being wrongly imprisoned. You live / act for this world, but play / have fun in your own.

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But at times of course, your world spills over and intrudes into their world, that’s when your so called friends drift away...

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The biggest misconception I feel is that society in general often want all children to

conform to a certain standard which does not of course suit everyone, this I feel is often

where the frustration comes in, as many simply have a different type of intelligence

and that I feel should be allowed and embraced, maybe it's society that needs to change?

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Of course over the years I have learnt to change, adapt and gain confidence with age. Unfortunately since being diagnosed have also found quite often that what others do not understand, they prefer to keep at arm’s length.

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We all need to learn to understand that in fact our symptoms whatever they are, are a part of who we are and lead a balanced life that allows for these differences. Of course it’s not that simply as we still are all so different and can have different associated conditions and circumstances. If you know one person on the autism spectrum disorder, you just know one! We are unique individuals and share traits which has been behind some of the greatest human achievements to date.

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I was speaking to someone on line and they said some think along the lines: quote:

“I've found Cambridge University to be quite conducive to the generally unique learning style and style of interaction that many with Aspergers have. In particular has been tolerance for limited face to face exchange, and patience put forth into allowing time for those with Aspergers to generate their thoughts and finish expressing them….”

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My reply: “Not everyone is able to go to Cambridge University, and not sure it would of suited me. What may suit one Aspie (person on the Autism spectrum) may not suit another, as we are all very different, the way I spoke when younger was very fast and muddled with a east end accent, and feel would never of fitted or felt at home in at Cambridge University...
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My cousin when to Oxford University a genius really, but since leaving moved into his own home and stays there alone, does work but not as we all know it and would be very hard for him now to integrate like the rest of us.
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I do understand what you he was saying, but we all have to learn to live in the real world. But, after saying that, it got me thinking - what is the real wrold to one, is not for someone else and why cannot people exclude themselves if makes them happy. Do we have to continue to act in the real world, and only be happy in our own space / world or will society ever accept and allow us to just be!

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I still do not know all the answers myself, that’s why I am trying to open discussion to get people thinking about our differences .As unfortunately people still think Aspergers is an illness, in fact someone said to me recently” I know what it is, it’s a mental illness” my reply to this was I am really not mentally ill, just different.

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The easiest way I can explain this: People on the autism spectrum think one way and people not on the autism spectrum think another way and we both continue to cross wires. People would never know if I did not tell them I had Aspergers, it does not mean I do not suffer and often feel at odds with the world.

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Just spend one day doing some think that you find really hard and glad when over, well that’s what it can be like for a lot of people on the spectrum a lot of the time. Just to chat to people and to smile and be friendly can at times be a task for some of us.

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I feel I have come a long way, but know other people on the spectrum still are so wrongly judged. We really are just unique individuals which the so-called 'normal' world often underestimate, and often do not try to understand. We have been made to believe in a stereotype of 'normality' and to panic, fear and react when others are different.

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I was speaking to a little boy at school some time ago and when I ask him why he was misbehaving so much, he simply said "I'm bored" these children often are very needy and find it hard to focus on things that do not interest them, is it really the child's thought he is bored, or is he just not being heard!

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I have had dark moments, which have lead to depression and my obsessive tendencies have taken hold, I have felt like withdrawing from society. But with new understanding comes hope and I no longer am crushed at every turn and truly love being able to be the real me. In the past at times it has felt like my very being has been smashed open with a sledge hammer, but now I am no longer lost and chaos no longer shadows me.

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Do not crush your child, embrace them and their differences, allow them to believe in and be themselves. We really are real people and can lead successful life’s, you may not always agree with our differences, but at least try and understand..

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There still are so many variables and differences and far too many labels, for even those on the autism spectrum it can seem like one incomplete puzzle at times.

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Being on the spectrum, and having Autism, Autistic Spectrum Disorder, Aspergers, High functioning, Low functioning and disorders that run parallel with the spectrum disorders and are treated the same but not on the spectrum like non verbal learning disorder – confused, to me they are all part and parcel of the same spectrum and I feel there should be one name.

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Autism is like a web which is in the center and around it just some of the associated conditions people can have PDD, OCD, Social phobia, Anxiety, Bipolar, ADHD, ADD, Dyslexia, Dyscalculia, Dyspraxia, Tourettes Syndrome, speech disorders… It seems to depend on who you see, is what you get diagnosed with. There really needs to be a one stop place, for advice on not just autism spectrum disorders, but all the associated conditions as well. Trying to be diagnosed can be near impossible especially for adults; the whole system at present is far too disjointed.

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I saw a program on Dyslexia and it hit me like a ton of bricks, how could I have and not of know until in my 40s. After I got diagnosed for Dyslexia, also found out had Dyspraxia. But still knew there was some think else, so continued to search and write down all my differences, armed with all this information approach my doctor and I was lucky he thought I may have Aspergers. Was told just like that, after all these years and referred onto a Clinical Psychologist.

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I have been diagnosed with Aspergers, Dyslexia and Dyspraxia (which have found out is the cause for my driving problems), Bipolar traits, but that’s ok under control now! and have sight problems. Undiagnosed but very sure have ADHD (diagnosed Sept.09) or ADD, always been extremely hyper, and as a child had Clutters a speech disorder.

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I did ask Tony Attwood on his views regarding Mood swings (Bipolar) link to aspergers, and his response was:

“Thank you for your message and very intriguing question. I think that people with Asperger's syndrome have many issues in relation to emotion regulation and perception which comes from my clinical experience. However, new research on the amygdala (a part of the brain that is involved with emotion regulation and perception) has indicated that those with Asperger's syndrome can have difficulty managing their emotions. I am not sure if the characteristic is one of bipolar or manic. I prefer to describe it as an intense emotional response that is difficult for the person with Asperger's syndrome and others to control. A person with Asperger's syndrome may very quickly move into an intense emotion with a relatively minor trigger.

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I recommend Cognitive Behaviour Therapy (CBT) for people with Asperger's syndrome to help them use their intellect to manage their emotions. I have a whole chapter on this in my new book 'The Complete Guide to Asperger's Syndrome' published by Jessica Kingsley Publishers, with more info. at www.jkp.com Tony Attwood”

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As a parent I have often been made to feel bad for my children’s differences, let alone my own. To me it does not matter if my boys are on the spectrum or not, the most important thing is that they understand who they are. I will never make them conform, but do want them to be confidence and believe in themselves Maybe this is because I recognized bits of me in them, and do not want them to suffer my childhood chaos.

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As a parent you know your children best, so try not to allow others to tell you they know better than you, as more than often they do not. Celebrate your child’s quirks, eccentricities. As just like our children we do not always need to conform, believe in them and yourself. What is really needed is for society to accept that there is in fact a whole group of people who are just different and it’s ok.

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In other cultures, some allow for differences and except individuals for the way they are, why can’t the rest of you. All I ask people to do is take a step back from time to time, and enjoy your child’s individuality. But, as long as we continue to prejudge others, and not recognize peoples invisible disorders, you may be hurting someone more than you could ever imagine.

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I continue to hear “but I did do disability training” but that only gives you a very basic idea and as yet does not usually cover invisible disorders, such as autism. And others have done courses on Autism, but a course only does help you understand. You cannot become an expert overnight, and please remember we are all unique individuals, so treat us as such.

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I have lived with and around ASD all my life, I have intently studied since realizing I could have, this was before I was diagnosed and I am still learning. No one knows all the answers yet, that’s why it’s so important we all come together and learn from each other. Far too many people are being left in the dark, needing help and not knowing which way to turn. Unfortunately it’s still a bit like breaking open a piñata and depending on which direct you go, is what you get diagnosed with and what help you receive!

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Do adults need to be diagnosed – my answer would be a big yes, if it was not so hard and cost so much, and if a doctor does not tell you “adult do not get diagnosed” false of course. Unfortunately at present it can seem like trying to fit together a puzzle with all the wrong bits. But I cannot express how much of a difference it has made to me, set me free of all the anger, frustrations and confusion.

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My boys keep things in perspective for me, otherwise at times it can feel like I'm in the middle of a very big ocean and no one can hear me, battling against impossible odds.. But as the Aspie community grows stronger there seems to be a brighter future for our children and that makes it more than worthwhile..

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Now at least I understand enough to be the real me and talking about my pass is no longer a dark shadow. So for now I guess I am happy being uniquely artist autistic and will continue to convince others that it really is ok…

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Autism spectrum disorder it’s not a dirty word that we should only mention behind closed doors, we all need to embrace, talk about and learn from each other if not for this generation, but the next.

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The government has already agreed to go ahead with screening children at a younger age, which I feel is brilliant and truly needed. But my concerns are if people already with disadvantaged learning disorders do not have nowhere near enough support, backing or understanding now. How will the government deal with a growing number of early diagnosis!

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My difference may be

invisible, but I'm not!

New%20Reduced%20portriat

If I was in a wheelchair would

you still discriminate against

me the way you do now!

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 AS Disorder – Difference – labels ! Autism Spectrum I feel the "Disorder" part to start should be dropped and maybe replaced with “Difference”. Let me explain some more....I feel all children with any difference should all be under one heading, less stigma “Differently able Children” as feel children should be assessed for overall strengths and weaknesses, whatever they may be and does it matter if one is better than the other, each child is a unique individual and should be treated as such.
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If every think came under one new heading “Differently able / minded!”  bringing together all the disjointedness and one name for all to include Autism, Aspergers, dyslexia, ADHD etc… a bit like what the DORE program is trying to do, but that’s not cost effective for individuals yet, I was assessed as have Aspergers and many associated / neurological conditions, but there is no way I could afford treatment like many others… people want AFFORABILITY and ASSESSIBITITY…
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Many of the symptoms of ”gifted” children, who often also have intellectual learning differences seems to run parallel with Aspergers, and as the diagnostic criteria for Aspergers has only been around since 1994 this could explains many of the crossovers, wrong diagnosis… to me all children are a gifted, the word is often used to described differently able / minded children, or parents use when they do not want to label a child. I feel the word “Gifted” is quite a discriminative word to use in this day and age. "Differently able / minded" seems much more appropriate if at all. Every child is a gift to me, and has some gift, just maybe not always given the tools to flourish....
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I have heard many gifted children also are now getting diagnosed with AS, I have heard that 75% of children with Dyspraxia are quite possibly on the autism spectrum! one of the many associated conditions I have myself along with Dyslexia, and more. And in fact up to 40% of all school children have a neurological difference. As for special education, I also feel “special” outdated and as with gifted should use differently able / minded for everyone!
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I like to think that one day there will be an overall assessment and no labels will matter, but until that time we all have to muddle through and fit the pieces together ourselves... I feel an overall assessment is needed for all school children.

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Quote: Being diagnosed for any difference, it's not about the

label no one need know, it's about true identity. - Alyson Bradley

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Dyslexia first some say disabled learners... I see it as differently able, as we learn and visualize differently, with me I was just thinking how I decode is also partly the way I verbalize things at times.  Dyslexia is just one of many differences those with neurological thinking can have, with me sometimes the aspie and other aspects all kind of merge, but then again they are all neurological and so I tend to agree with information sent to me, via AsPlanet forum member http://asplanet.info/forum/index.php?topic=205.msg8712#msg8712 quote from her doctor ” He went on to say (Aly, you're going to love this) that the way he sees it is that it's often connected together, anyway.  Where there's dyslexia, there's often another neurological disorder present.  He said having dyslexia is like having information processed into a folder, then having that folder stored in the wrong place. “

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Some think I continue to say and have always thought, that many of the neurological differences should be part and parcel of the bigger autism umbrella  - I totally agree that we take in all the information, but it’s like it gets mixed up in the process somewhere. One of the biggest things I remember at school was the whole shame of being intelligent but not being able to do some things like everyone else which seemed quite simply things... a shameful secret which zaps confidence. I went out of my way to hide the fact and even as an adult having an misunderstood difference it can make you feel extremely inadequate, dumb...

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. Fundamental Learning Center

“40% of your classroom may suffer from learning differences”

http://www.funlearn.org/movie.php

“Millions struggle undiagnosed: Neurological in origin, a learning difference interferes

with an individual's ability to store, process or produce information. Every racial,

ethnic and economic background has children that are undiagnosed. A learning

difference will affect a child's ability to read, write, speak, and compute math

and will impede development of social skills. An ever-widening gap develops

between their true capability and their day-by-day performance.  At-risk

behaviors develop. A sense of worthlessness overwhelms the child you love.”

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The way I see it is that all neurological conditions should be under that one big autism umbrella, we are all just differently able and does it matter if we have a higher IQ or not and if so why don't they have categories for NTs like low and high functioning!  I think every child should have an overall assessment for neurological differences and as has been said up to 40% of all children have to some degree, and then work with there strengths and weaknesses, the word low functioning sounds sub human to me and do not know anyone who likes to use the word, I also feel the word special education has out lived its day, the stigma with being within the special needs system is huge. I feel everyone with neurological differences should just be classed as differently able and get support where needed.

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Even high functioning (another unnecessary label I feel) children need support, but still not recognized enough...  As for calling children gifted please, it's like saying your child is better than the next, to me all children are a gift and all have a place, but many especially from poorer families just get lost in the system, it's like throwing the injured to the wolf pack at times, why it continues in this day and age amazes me. It is about time everyone got behind the next generation of children, communities as every child has a right to an education, does not happen and some barely survive school. It amazes me that many of the so called do good groups often only support "nice families" too many rules, and those in real need so often no one seems to have the time for. Of course there are some great programs and inspirational people who really do help, but not enough. Still I guess the existing school system does not suit many children and for real change the whole system needs to be looked at if you ask me!

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"Difference of opinion is so often just misunderstood difference"

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Copyright © 2008 Alyson Bradley

www.Asplanet.info - Aspergers Parallel Planet

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User Comments
Comment by Guest on 2008-03-08 22:38:46
VERY Interesting! Thank you VERY MUCH!! 
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Thanks you for sharing  
ASD is very much like an invisible disorder but people like you who write about their experiences help get it more out in the open. THANK YOU! 
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I appriciated it, think I might link it to the norwegian forum. 
Comment by Guest on 2008-07-14 19:10:23
Hi. My son diagnosed himself with dyslexia when he was 11. He has since been diagnosed with dyspraxia and Irlen syndrom. Throughout his early educational years he has had no support from the school. He is 13 now and is averaging in his year, but he is bright and could do so much more. 
 
My daughter has just completed her GCSE’s. A series of failed relationships with her boyfriends since Christmas, left her self-harming and suicidal. 
 
I suspected she may be dyslexic last year, when her mock exams went pearshaped. I now suspect that she is Aspergers also. She is due to be seen next week by the adolescent unit. She is bright, gifted in music, literature and good in fact at nearly everything she does. 
 
I suspect that I am also aspergers along with my mum who is 85 and my sisters, one who now desceased. 
 
Life has never been easy and we are all unsociable.  
 
Liz 
 
My comment: 
Liz I know only to well what its like growing up with dyspraxia, dyslexia, aspergers etc.. back in my day, education just did not work, things are improving but far to slowly. But recognizing your child's differences and being supportive can make the world of difference. 
 
I am sorry to hear about your daughters self-harming and suicidal. Its far to common among Asperger adolescents. Its hard enough being a teenagers, often feeling at odds with the world anyway... seeing things differently does not help - that can mean different priorities or different sensory experiences which can be exciting, but can also be exhausting, isolating and confusing. So I am glad she is getting some support, but please feel free to eemail me any time and I will help if I can... 
 
But for all of you as a family, not understanding the differences and feeling your the unsocial ones when really you have had to adapt change and try and fit in all your life, understanding can help a lot and to remember we do not have to get on or be like everyone else... best advice I ever had, was to surround myself with like minded people and embrace my difference, who I am.  
 
Since being diagnosed do not seem to have any real friends here in NZ, do have some great ones back in the UK, so unable to surrounded myself yet, but with my new journey and understanding I am meeting new like minded people, and realize there are so many others - plus a huge community in cyberspace. And more and more people coming forward and wanting to know, change takes time, but its happening slowly....
Comment by GUEST on 2008-06-02 17:37:53
This is absolutely amazing, this gives me hope for the future of people on the Autistic Spectrum as I'm on it myself. 
 
Thank You
Comment by Guest on 2009-04-23 22:45:27
I think most gifted people are on the autistic spectrum, even if it's only right on the edge. 
 
My reply 
I tend to agree, many of us on the spectrum seem to be on the edge of something and as Asperges has not been around that long, what were all those interesting, deserve, differently minded individuals called!  
 
Another reply: 
I know, I know! 
Having been one of those for 56 years, I can tell you when I was well to do, they called me eccentric technical genius, when I was hard scrabble living in the tent, I was the crazy old cat lady with a mind like an encyclopedia." When I was a child it was 'willful, stubborn! with a beautiful voice," and I really thought this was part of my name "Oh, Merle, why do you always have to be different?
Comment by GUEST on 2008-12-06 16:25:39
Wow this asplanet is great, I dont have asd but my 5 yr old son was diagnosed with asd 1 year ago and i have found your articles very informing. I dont know anyone who has asd and think its wonderful that you have shared your life experiences, so that people like myself get a better prospective of what life is like for people with asd. I feel that i am fortunate to be able to hear such things from people with this challenge rather than medical professionals who often get you confused. my son is wonderful and i wouldnt change him for the world, as his mother i will embrace his qualities and encourage his strengths.  
I cant thank you all enough youve been a great help just telling your personal experiences. xx Ronans mum. 
 
Reply: 
Thanks you so much for your kind words, with a mother like you I feel your son will be more than just find, as understanding really is the key to acceptance and helping him to grow into that unique individual that we all are, its just some of us are a little more difference, extreme, complex, but to me that’s what makes the world such an amazing place...
Comment by Guest on 2009-05-13 23:41:45
The link between ADD and Aspergers Syndrome (written by Shellique Carby's) Share: 
Attention Deficit Disorder (ADD) is a common co-existing condition with Aspergers Syndrome (AS). Some authors estimate that 60% to 70% of Aspies (people with Aspergers) have ADD. But there is no hard science to say how the two disorders are related. 
 
AS is a mild, high functioning form of autism. Approximately 1 in 150 children have been diagnosed with autism in the last few years. ADD falls on the autistic spectrum. Autistic spectrum disorders are characterized by an inability to interpret, initiate and maintain social interactions, handle anxiety and sustain external attention. 
 
Aspies can show a variety of characteristics and the disorder can range from mild to severe. People with AS show marked deficiencies in social skills, have difficulties with transitions or changes and prefer sameness. They often have obsessive routines and may be preoccupied with a particular subject of interest. They have a great deal of difficulty reading nonverbal cues (body language) and very often Aspies have difficulty determining proper body space. Often overly sensitive to sounds, tastes, smells, and sights, Aspies may prefer soft clothing, certain foods, and be bothered by sounds or lights no one else seems to hear or see. When an Aspies gets upset because of this, it is called sensory overload. It's important to remember that the person with AS perceives the world very differently. 
 
While ADD research focuses on the symptoms of the disorder, autism research looks for root causes in the hope of developing more effective treatments. 
 
The problem is that doctors regularly check children for ADD but not for AS. AS is a new condition to professionals, only being acknowledged around 1994. Doctors are also hesitant to label someone “autistic” because of the negative perception people have against it. People associate the word “autism” with Kanner’s Autism, the isolated, rocking, removed autism as the only autism. However, it is okay and even an honour to have a child diagnosed with ADD. 
 
Because there is a large overlap in symptoms of ADD and AS, doctors often misdiagnose ADD instead of AS. In one study of 36 children with AS, 92% of children were initially misdiagnosed with some other problem, mostly ADD. Diane Kennedy, author of The ADHD Autism Connection, says that medical and educational professionals are not trained to recognize the similarities between the two disorders. She says that ADD and AS are closely related. 
 
Some similarities between Aspies and Adders: They are very intelligent and have a high IQ. Both have poor coordination and fine motor skills. Both have a lot of anxiety, get distressed easily and have tantrums. Both can be tactile defensive and not want to cuddle. People with AS and ADD can be in their own world, have fidgety and impulsive behaviour, lack appropriate inhibition. Both have no real fear of danger. Adders partake in potentially dangerous behaviours for the thrill of it and to feel stimulated. Adders seem to have no normal caution and do not consider the consequences of their actions. Both can be either hyperactive or extremely slow and lethargic. Adders are always on the move and are overactive even when they sleep. 
 
Although the same area of the brain is affected in AS and ADD, a problem in the executive functions of the frontal lobes, Aspies will probably not respond to medication while Adders would. So a misdiagnosis could make things worse. What complicates things further is that AS usually shows itself once the child goes to school because then the child has to socialize. 
 
Both Adders and Aspies struggle to interact with other people and focus on other things at the expense of personal relationships. They have problems with communication. The main difference between AS and ADD is that Aspies do not have what is called “social reciprocity” or Theory of Mind, which is the ability to understand that other people have feelings, motivations, expectations and desires which are different from their own. People with ADD have this ability. They understand social cues, non-verbal communication and hidden agendas in social interactions. They are very social and tend to bond with similar minded people for protection. They do not understand when not to be social. 
 
Adders understand social rules but forget to do them or do not have the self-control to follow them. Aspies do not understand or know what to do. They do not understand that relationships are two-sided. If an Aspie talks continuously in a monotonous tone about his particular interest, he does not understand that he is boring his friend and not letting his friend contribute to the conversation. He looks bright but distant, and feels precocious and hyper-mature. He needs to be seen as intellectually credible. Adders cannot control themselves from dominating the conversation even though they are aware of it. Both Aspies and Adders can be disruptive and interrupt others, struggling to wait their turn. Aspies struggle not to verbalise their thoughts when they think them. 
 
Both Adders and Aspies can talk too loud and have problems adapting their behaviours. Same symptoms but for different reasons. Aspies laugh or giggle inappropriately or for apparent reason, but Adders do not. Both look like they are not listening even when you talk to them directly. 
 
Aspies often do the same behaviour repetitively and have rituals whereas Adders do not. Aspies regulate how they understand ideas by repetively sorting them out mentally. They are driven to learn new ideas for them to make rules about their other ideas. They are uncomfortable with too many ideas. Adders avoid rituals and rules to regulate how people make them think and feel. They do not want to be controlled or forced to do anything, and therefore often break the rules. They are uncomfortable with too many rules. They feel annoyed, defiant, judgmental and intolerant. They look down on people who obey the rules and see them as naive sheep for valuing the normal. Here we see the thread that links ADD, AS and the other conditions on the autistic spectrum: The significant inability to connect with socially normal peers. The basic difference is the combination of symptoms. Aspies have many more social problems. They tend not to need as much social contact as Adders do. An Aspie’s thought process is very different to that of most people. 
 
Aspies struggle to maintain eye contact and often can’t give the correct emotional response to a situation. Aspies can be unwilling to communicate verbally although they have very good verbal skills. Adders show no resistance to verbal communication but many of them have speech disorders. 
 
Adders do not pay attention to detail and make clumsy mistakes in their work. But Aspies focus so hard on one activity they are interested in that they lose awareness of everything else around them. But both can be inattentive and get easily distracted. 
 
To summarise, Adders are more social than Aspies. They understand social rules and non-verbal communication whereas Aspies do not. But both struggle to interact socially for different reasons. Aspies are preoccupied with regulating their thoughts but Adders are preoccupied by not letting themselves be controlled.
Comment by Guest on 2009-02-28 18:30:52
Thought you might find this interesting. Someone put me onto this website some time ago as they doesn't like the AS label!. 
 
My reply: 
while highly sensitive is how I describe Jack my younger son, because he is not ready to handle the full label. I do feel as with the label gifted and many others its a refusal to be able to accept the correct term thats being some where under the bigger autism umbrella, and many of these varied terms to me are those that are not quite ready to embrace there neurological differences, simply being differently able. So I guess what ever label we give our selves is irrelevant in a way as long as we can recognise our differences... 
 
Response: 
I quite agree! And highly sensitive was what applied to me as a child. (slightly pejorative- as if it's a choice!)... 
Comment by AsPlanet on 2009-09-16 17:34:16
A reply to What, Ever, Is Autism? some great interesting comments on this link : : http://autism.about.com/b/2009/09/15/what-even-is-autism.htm#comment-155259  
 
My comment: 
Many of us on the spectrum who seem to have the most difficult in the world often have a whole list of co-morbids, mine all neurological and I can not help but wonder are there to many labels for many of my overlapping conditions. To me I am simply neurologically complex, as whenever I see a professional they feel a need to give me yet another label for there area of specialty.  
 
While Aspergers alone is very real and socially and sensory wise life has always been that bit more different, interesting for me, add in all my co-morbids dyspraxia, dyslexia, adha, bipolar what don't I have!!! I truly feel the over labeling is what complicates and simply there should be one stop centers for all these neurological complexities. And maybe all tested for our strengths and weaknesses and work with that, as we vary greatly form person to person! 
 
I would like to add I have never medicated and have never had any support until recently, and I guess I am lucky I did survive, because growing up so neurologically different no easy task, but while the professionals continue to fight over funding and continue to figure, individuals like myself have to work out often the complex maze of self on our own. 
 
My frustrations in life like a never ending roller coaster at times and I can only imagine the frustration for none verbal children, but communication wise myself often was not understood as a child. I truly feel neurological spectrum conditions including autism should be under one giant umbrella and its about time the world stop fighting over funding, trying to fix and excepted our differences, because until this happens so much misunderstood talent will be continued to be wasted. 
 
I wrote the information above a while ago "Diversity of Autism" as convinced its more simply in the fact the more neurologically differently wired we are the more at odds with the world, but to me more intriguingly interesting and like to think one day we will not have to find our own way through the maze of confusion, labeling as many overlap and interact!  
 
Many of us do need some help support to live in society as is, but I can not help but feel until all parents teach there children about diversity and difference many will continue to feel alienated from a world that we have as much right to live and be in. Parents need to remember there children become adults and many like myself I quite happy with who we are, my biggest problem often societies attitude to me!  
 
We can all learn from each other and I feel we should celerbrate diversity and difference not stress, fight over it, we are not labels but real people and with understanding comes awareness, comes acceptance. 
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Comment by GUEST on 2009-09-16 19:57:12
Hello Alyson, 
 
I came across your website from your comment (above) on Lisa Jo Rudy's article 'What, Even, IS Autism?' I want to thank you for your posting. I thought it was excellent - the sort of thing someone should pick up on, to pass on for teachers to use in their classrooms to help their pupils understand this phenomenon, and why some kids are 'differently abled', is all. 
 
From my reading on the subject, this whole 'spectrum' stems from damage to the brain's cranial nerve systems through damage to the myelin sheathing insulating the nerve systems; thus 'wires get crossed'. Without going into the details here of what is behind all this nerve system damage (essentially: subclinical encephalitis, ie, inflammation of the brain, and consequent damage to the myelin sheathing, from various sources, including, but not limited to, vaccines), I just want to mention that some studies have found value in supplementing with essential fatty acids (Efa's) to try to repair the damage to the myelin sheathing (myelin is made up of fats). For example, the optic nerve system is structurally very high in Efa's; thus it's logical that it is often damaged by this process, and kids become dyslexic as a consequence. And so forth. If you haven't come across this area of research yet, I urge you to Google info on Efa's in relation to Minimal Brain Damage/Disorder (MBD). 
 
The other thing I want to say - besides giving you much credit for how you have dealt with the difficulty you have been landed with in your life - is that I don't have the smarts to set up my own web site, and I'm 'NT'! Congratulations!  
 
Indeed: "We can all learn from each other...: 
 
Well done, Alyson. You are an inspiration. 
 
 
My reply: 
Thanks you so much for that and I will research up more on "Efa's" as feel we all need to keep an open mind and continue to read, research and progress. 
 
As for children, school I truly feel the only way forward is for all children what ever there differences to be tested for there strengths and weaknesses, myself I have many weaknesses but with that strengths ie..easier to set up a web site on my own as tend to view the overall picture concept of things, but harder for me to slow down enough at times to focus on the smaller things. I also have extremelly fast processing skills and before I understood my own strengths I thought there was something wrong with most people, because while they where discussing point 1 I am always 10 steps ahead. Some of my weaknesses put me in an interview or in a group of new people and I can become a ranting baboon! I process focus better one on one, partly why many of us on the spectrum seem to relate to computers, but we also overload, meltdown, shutdown at times... but try and show me what to do, give me instructions even I will confuse you, its like we have to do things our own way to work them out, process in our terms. 
 
and for those of you with children on the spectrum be patience listen and you may learn, embrace each child for who they are and extra encourage to children that often are so wrongly judged and misunderstood can make a HUGE differences... 
 
Regards Alyson
Comment by Alyson Bradley on 2010-01-20 15:59:57
I have added some recent face book comments adapted to make sense as now only my comments Jan.2010: 
Quite often we judge as parents what we should do, their is a difference... but what often happens within families, extended families others encourage us, our children to conform to meet societies expectations and theirs. Of course some of us will always be more open minded than the next, but as I have found the more we believe in self and what we do others start to, but often it takes others a lot longer to get to the point we are, if at all... they have to want to I guess! 
 
Allowing, accepting and embracing our children for who they are should be up most at home first, because if children are encouraged from very young they have the confidence and find it easier to adapt to most situations.... but everyone should be apart of the next generation of us, home, school and community for all children. 
 
Education like most things have progressed more so in some countries, places than others... in regards to the autism spectrum no easy answer, first not even recognised as a group like in many aspects in regards to funding like the deaf community etc.. partly maybe the complexities of autism still not understood by many, and it depends on many factors co-morbids etc... and of course their are various types of intelligence. Educating others in regards to autism, national champaign needed, far to much ignorance or lack of good consistent information available. 
 
A lot of differences on the spectrum where support is needed often comes under the bigger neurological umbrella and so I feel maybe all children at key stages should be tested neurologically wise, then all would know strengths and weaknesses, as many on the spectrum have huge strengths along with weaknesses like myself... in fact the test I had done was the most helpful thing, it explained so much more than just labels and help me understand many things. 
 
I have spoken to teachers the ones I have spoken to, have all said more support i.e. full time class assistants or smaller classes, up to date technology can help a lot also. But something needs to be done apart from what already is being done, because where I am in NZ still asperger children not being allowed in some schools, children reaching the age of 10 and no one noticing they have dyslexia and more, unbelievable maybe but its happens in this day and age.. 
 
Lots of individuals speaking out and that helps, lots of individuals working on guidelines etc... like here in NZ: 
Autism Spectrum Disorder NZ work program: 
http://www.moh.govt.nz/moh.nsf/indexmh/disability-keyprojects-asd-guideline-updates 
but without funding or restrictive funding many good intentions will not happen, it should not be down to next years funding! 
 
From what I have experienced its not the teachers, schools as such lack of funding far to often... teachers and parents need more say, we all know classes have been to big for years and teachers need more support. 
 
Just another thought the last statistics I saw on this was a while ago, but it said at least 40% of all children have some form of neurological difference be it autism, ADHD, ADD, Dyslexia, ... Dyspraxia and many other differences, of course the more individuals have like myself the harder for them to fit in generally (neurological, sensory, mental and intellectual learning) but many have a combination... and I see the way things are going 50% plus of children could need a different type of education,apart form other needs does that not say something, if we wish to be inclusive and educate every child, I thought they had a right anyway to be educated! the school systems need to be looked at... we all know for years for many it has not worked and usually cost society more long term! 
 
Government in NZ do fund for Dyslexia, if parent or school even picks up on, but not all the other neurological complexities directly... to me many of them come under the bigger autism spectrum umbrella as co-morbids, maybe the way we look at autism needs to be changed... Neurological diverse society comes to mind!


Last Updated ( May 03, 2010 at 10:05 PM )