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21 Jan 10 - 12:29 PM (#2817666) Subject: A Wish for Autism From: Lizzie Cornish 1 The words below are from my friend's Facebook page, which she posted very recently. Her name is Deborah Harvey, and she is an incredibly talented writer and photographer. Many of her blogs on Myspace will bring tears, both of joy and laughter. She is the mother of 4 children, 2 of whom are on the Circle of Autism.. This is her wish: "My wish for 2010 is that people will understand autism is not a disease; people with autism are not looking for a cure but for ACCEPTANCE....93% won't copy and paste this, will YOU make this your status for at least one hour" - Deborah Harvey I have it on my page, please...take it to yours too and help spread this Wish around. |
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21 Jan 10 - 12:29 PM (#2817668) Subject: RE: A Wish for Autism From: Lizzie Cornish 1 Sorry. BS please. Thank you. |
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21 Jan 10 - 12:46 PM (#2817684) Subject: RE: A Wish for Autism From: GUEST All good fare. But autism carries responsibilities, and employers who are enlightened enough to employ autistics who are capable of holding down a job also need to protect others they will be working with. This may not happen and in my case didn't. I lost my job when the guy thought I was the re-incarnation of his ex-Bushido Aikido instructor. When I spoke to said instructor I found the guy had decided to carry-on the instruction in a dark alley. When the instructor was presented in court he did have a passing resemblance to me, which could have been resolved by asking me in the first place - but poor (non-existent in this case) social interaction is the defining symptom, is it not? As an altruistic folkie I ignored the warning signs, as a mark of my tolerance. As the security staff said - "you should have told us, we would have sacked him before he hit you". Who is the victim now? There is more to teach the general public than tolerance on this subject. Try teaching them how to educate autistic people, anew, every day, in the etiquette that we take for granted. And come back here and report on the success rate. Tolerance is only half the story. The received wisdom is that anti-social behaviour can and in these cases is more likely to, escalate unless it is checked regularly. I bear witness. |
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21 Jan 10 - 12:47 PM (#2817689) Subject: RE: A Wish for Autism From: Mrs.Duck This is appearing all over Facebook with different disabilities where 'autism' is written. I work with children who are on the autistic spectrum (not circle) and we do not treat them as having a disease but, whilst accepting their autism, we do have to work with them to ensure that they are able to be accepted in the wider community. |
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21 Jan 10 - 02:16 PM (#2817786) Subject: RE: A Wish for Autism From: Acorn4 As we've got an autistic son, I've out it on my facebook. |
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21 Jan 10 - 02:31 PM (#2817802) Subject: RE: A Wish for Autism From: Lizzie Cornish 1 Thank you, Acorn. I refer to it as the Circle of Autism, always will do...and I feel that actually, it's the wider community which needs to be educated, Mrs. D. I have learnt a great deal these past years from people on the Magic Circle, and I'd not change one single thing I've learnt about or experienced. At times, I have felt very humbled and very privileged to have learnt what I have, and quite frankly, it breaks my heart that so many in the wider community have absolutely no understanding whatsoever, nor seek to even try to understand. |
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21 Jan 10 - 02:34 PM (#2817810) Subject: RE: A Wish for Autism From: Richard Bridge I have seen more than a few dangerous sufferers from autism. It is a dysfunction. Sympathy and all that, but the sufferers need to manage their condition so as not to traverse social norms. |
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21 Jan 10 - 02:43 PM (#2817821) Subject: RE: A Wish for Autism From: GUEST As usual Mrs Duck makes a valid point. Some years ago I worked with a young man with Down's syndrome who had spent almost all his life in a specialist residential home for children and outside the mainstream education system. The staff, with the best possible motives, offered these youngsters a great deal of affection often in the form of hugs and other physical contact. When he was a strapping young man of 18 years a place was found for him in a small group semi independent-living home, with opportunity for further learning at a local college. Unfortunately, the experiences he had grown up with meant that he was blissfully unaware that the first person he saw (a total stranger and young woman of 18 who he wished to be friends with) did not understand his gesture of a large bear hug and both she (and the authorities) had to be reassured at some length that it was not an attempted sexual assault! It is necessary to both educate the 'community' in acceptance and to teach what is 'acceptable'
Thanks. -Joe Offer- |
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21 Jan 10 - 02:46 PM (#2817825) Subject: RE: A Wish for Autism From: olddude SO Much of my time Lizzie trying to help families with Autism. Some of the stories soooo heart breaking. I am working on a song right now for the autism community ... such a heart break. Oh I have 5 copies of "Healing our Autistic Children" which is just some ways to help improve not cure(no such thing) through learning and diet and some other things that just have helped.. good book actually... PM me her address and I will send it out. It came from one of the autism foundations that I work with Dan |
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21 Jan 10 - 05:06 PM (#2817996) Subject: RE: A Wish for Autism From: GUEST,leeneia I do not wish to sound cynical, but a few logical, practical, do-able suggestions would help far more than than that 'wish,' which is basically a cry of despair. Cries of despair are real, but they don't often get anything done. |
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21 Jan 10 - 05:57 PM (#2818050) Subject: RE: A Wish for Autism From: Donuel I might be right outside the circle of autism but my son is very much inside the circle but is only mildy autistic by diagnosis which has afforded him IEP programs his whole life. NOT ONE child in the neighborhood has ever played with him in the last 5 years. He won the National Geo 1st prize medal for his school but not the State last year. I know predjudice and fear acutely. I feel bad sometimes that he has been the butt of their jokes and isolationism. But that is all he's known and he takes it in stride with a happy attitude of "It doesn't matter" He has the gift of charm for his teachers, advisors, staff and administration. Everything I don't have. I am positive he will continue to do well and remain on the honor roll. Then, who knows... if he is lucky in love, the lady will be very fortunate. Living with severe forms of autism is a challenge I have not experienced. PS We were introduced to autism by professionals as the Spectrum or "rainbow" of autism. Circle seems fine by me. |
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21 Jan 10 - 06:11 PM (#2818058) Subject: RE: A Wish for Autism From: Genie Well said, Leeneia. Appeals for understanding, acceptance, and inclusion are good. But sweeping generalizations are not (generally). When you say " ... autism is not a disease; people with autism are not looking for a cure but for ACCEPTANCE. ..." it sort of implies that people with autism need no special help to thrive and function well in society. I don't think that's true in most cases. "Disease" isn't the right word or concept, but in many ways having autism is a disability that calls for remedial or special training or treatment. I hate the popular tendency to scoff at "political correctness," but sometimes it does become de rigeur in educated circles to use accepted terms & concepts -- such as that nobody is "disabled," only "other-abled" or "special." Sometimes it's nonsense. Blindness, deafness, severe arthritis, tone-deafness & very low intelligence are disabilities. Even though some people thus disabled may have exceptional abilities in other areas, that is not guaranteed. I am not yet convinced that having autism is -- other things being equal -- as desirable a condition as not having it. So I agree we should "accept" people with autism, just as we accept other people, whether they have to deal with "disabilities" or not. But what exactly does it mean to say you wouldn't like to find a cure for autism (or ways to prevent it)? If it gets to the point where 1 in 10 people have autism, is that just fine? |
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21 Jan 10 - 07:16 PM (#2818120) Subject: RE: A Wish for Autism From: olddude last stats i heard 1 out of every 150 children. i know severe autism first hand with my niece and with many friends.. words can't describe the tears of so many families. i have 10 copies of the book i just checked, i will mail to anyone who needs one free till they are gone |
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22 Jan 10 - 03:30 AM (#2818256) Subject: RE: A Wish for Autism From: Lizzie Cornish 1 Thank you, Dan. You're always so kind. x I'd love to have a book, and I'll pass it on to Deb as well. I'll PM you. Thank you. x OK, the things I've learnt about autism over the past years, things I never knew before...and I know that the Circle covers many different aspects, but this is the Circle that I have discovered so far. First of all, I was shocked at how little I knew. Then I felt sad...and angry too that there was so little information around, unless you start to search for it. I learnt about a terrible fear, a fear which dominates the minds of so many on The Circle. A never ending fear that brings with it almost an animal instinct for survival. Imagine living in a world where the faces of those around you are unreadable. No expression means anything to you, so you are completely unable to understand what is meant when a 'smile' happens, or laughter, or a face becomes contorted in anger, wrinkled by sadness.... Imagine a world where you often cannot get your words to leave the inside of your head, and even though your mind is a-buzz with feelings, opinions, emotions, they are never able to reach other people. Imagine *longing* to be hugged, but being terrified of physical contact. Imagine having the most terrible view of yourself, a self-loathing that runs so deep inside your soul that you can barely function at times....and you know, you KNOW that eventually others will realise why you hate yourself, and hate you also. Imagine having a gift, a gift that came with being born, whether it be painting, songwriting, musicianship, writing, dancing....but it is a gift that also brings much pain, because you have to be the best, even though you always believe you are the worst. You have to make that painting Perfection, likewise the song, the book, the dance, the sport... People tell you have this 'gift' yet you feel cursed by it, because of the anguish that it causes. You don't want people to see your paintings, you don't want them to hear your songs, because the thought of criticism breaks your heart, the thought that others will start to see that *you* are the person you know yourself to be, and the self-loathing has taught you exactly who that person is.... So you hide your paintings, you don't sing your songs, you never let your beautiful words be read by others.....but you simply can't stop creating, creating, creating, because even though you may live in a world which seems silent, to other people, you never know silence... The voice inside you, be it your own, or those of others, never shuts down, so sleep is hard....and you have this terrible, aching tiredness.... But you learn, you grow....You teach yourself humour, teach yourself about expressions and you start to finally understand, the merest bit, about this world, but nothing comes easy, and always you are on your guard, for the expression you haven't read up on, for the words that you don't understand the real meaning of.... You hear too loudly, too clearly...and unexpected sounds scare you. You 'see' too clearly, noticing everything, and sometimes to look into the eyes of others is overwhelmingly scary, because you are frightened of what you will see there, and...it almost physically hurts you to do that. Your sense of smell is extremely intense, and you cannot understand why people want to wear perfume, or cannot smell some of the horrible smells that you can. Your sense of touch is of the same intenseness, which is why you often don't like others touching you, in fact, at times, you can't bear to be touched or touch others... The terror of being in school, surrounded by faces you cannot read, in an atmosphere of constant wariness, waiting for the aggression to start, living on your nerves, to the point where at times, you can't take it any longer and you lash out at anyone who is around you, in blind panic...but they do not understand.... 'They' do not understand. They are all too busy, learning about things that don't really matter. Despite so many people feeling as you do, no-one is talking about it in schools. No-one is starting to explain. No-one is starting to understand that actually, you don't want to be in a huge class, but would far prefer to be on your own, just having to relate to your teacher, because you love to learn, love to know, WANT to understand why YOUR world is as it is, and 'their' world is not. Why don't they understand that you need to live in a 'cotton wool world' where you are surrounded by love and understanding. Not pity, hell, you don't need or want pity, because you are an intelligent person, often vastly so...but everything is tuned up too high, to the point of Highly Over Sensitive, where everything hurts you, be it physical or emotional. You realise that somehow, you have to learn to cope, and if you're lucky you are brought into contact with those who are there to do exactly that.... But often you are not...and your life sinks down into drink and drugs, anything to shut out the pain... Your family feel as though they've lost you, but of course, they haven't, they've just never leart to understand the world you have been born into. There is nothing wrong with wanting to live alone. It is, at times, the most relaxing moment of your day....but 'alone' in this busy world, is becoming more and more difficult to find. Often though, 'alone' turns into 'intense loneliness. Every relationship tears you apart, because your emotions are wide open, red raw, and often, if you have ever let yourself fall 'in love' you are unable to bear the all-encompassing pain that goes with love ending..because to you, love should never end... The world doesn't understand that behind the so often, seemingly violent and angry behaviour lies the gentlest of people, who only want love and affection...and a quiet, peaceful life where you know that you can trust someone implicitily, to the point of all your senses and emotions calming down... If love dies, then that is it, because the unbearable pain can never be endured again, and so...you never love again, thus protecting yourself completely. It is the only thing you feel you can do. Sometimes, you are unable to live life 'outside' at all, and need to be looked after 24/7. People think you are stupid, unable to think as they do....but as you sit under you 'hugging blanket'...the one that covers your head, moulds close to your body, and keeps you 'safe', your mind never stops thinking, never stops agonising that someday, someone will understand, someone will be able to unlock the door for you...Until that day, you rock back and forth, as that brings it's own comfort to you.. |
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22 Jan 10 - 03:45 AM (#2818261) Subject: RE: A Wish for Autism From: Lizzie Cornish 1 What the world doesn't understand is that if 'they' finally find the 'autism gene' and decide to remove it, then 'they' will remove future generations of the most gifted, talented people, the people who are Jewels amongst us... And our world will sink into its own Silence, bereft of so many colours of humanity. The high intelligence, the beautiful songs, the wondrous paintings, the words, feelings and emotions that so often flow from inside the minds of those on The Circle, who, unable to pass those feelings on to us verbally, do it so many other ways..... And that is why you will often stand in front of a painting and feel the enlightened. It is why you will hear a song of the most utmost and intense Beauty that moves you to tears, that can almost turn your life around, as will a book, a poem, a dance, an athlete.. And don't even get me started on the Scientific side, because without Bill Gates and his 'On The Circle' mind, I'd not even be writing this, nor would you be reading it. Autism IS a Gift. But it is a Gift to US, not to those who live within it, and we owe those on The Circle so very much, because without their wonderful minds, their love, their feelings, we would be so much poorer. Therefore, it is not just an obligation but a Duty to pass the Understanding and Acceptance of Autism around the world and to ensure that every single child from early school age upwards is aware, so that they grow up knowing how to speak The Language of Autism. As I said, the Circle is a Magical one, even with, and despite, the terrible sadness. I believe that we are ALL on The Circle, in one way or another. I know my family most definitely is. But it is up to each and every one of us to realise what precious gifts those on the Inner Circle of Autism have given us, and will continue to give us. It is way past time to give back, for all we have been blessed with. |
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22 Jan 10 - 10:43 AM (#2818536) Subject: RE: A Wish for Autism From: Folkiedave This is appearing all over Facebook with different disabilities where 'autism' is written. I work with children who are on the autistic spectrum (not circle) and we do not treat them as having a disease but, whilst accepting their autism, we do have to work with them to ensure that they are able to be accepted in the wider community. I am not aware of anyone who believes that someone seen to be on the autism spectrum is capable of being cured. Certainly in my limited experience your description of working with people (not just children) who are somewhere on the autism spectrum is precisely the same as yours, the aim of integration. People with Asperger's syndrome are on the autism spectrum and are perfectly capable of functioning at quite a high level. My wife sees a lot of people who have Asperger's. She works at a University in learner support and deals with a wide range of people who have some learning difficulties which prevents them reaching their full abilities without support. Those with Asperger's (often some of the easier ones to deal with) achieve degrees in a whole range of subjects and can work at doctoral level given sufficient support. Should they want to of course. |
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22 Jan 10 - 10:58 AM (#2818548) Subject: RE: A Wish for Autism From: Donuel Reading people's faces is a fascinating observation. When my son was still in a pre speech faze at age 4 and 5 he would often get close to a person and study thier face with some intensity. It was if reading faces were a challenge that he really wanted to crack. |
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22 Jan 10 - 11:25 AM (#2818584) Subject: RE: A Wish for Autism From: Wesley S Liz - Autism is a GIFT? What a crock. Not to this dad it isn't.Let's take a poll of every family that has a child with autism and see how many agree with you. And your discription of someone with autism fits SOME people with autism but not all. Please don't make that assumption. My son is nothing like what you've described. I've said it before: If you've met one person with autism you've met one person with autism. |
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22 Jan 10 - 11:30 AM (#2818585) Subject: RE: A Wish for Autism From: olddude Curing autism ? Sadly the fact is after so many years of direct experience with folks NO ... making a child better through specific education, diet, Yes .. but it takes money and a lot of it. In this nation nothing is paid for. I can tell you stories of folks losing their homes because every penny went to help their child ... The meds that most serious cases need are not labeled for "autism" hence even when you have insurance, they won't pay for it because it was lets say for ADD not autism ... terrible. One of the things that I have seen many times is a case where a child has autism, doesn't speak, the parents will do quite a bit of intervention and things seem to go really well and say my child is cured and I did it this way or that way... then about age 7 they get nailed really hard with the rage and the other terrible problems because the nature of the disorder changes somewhat as the child grows. Heart breaking is the only word. No two cases of serious autism is the same I think. |
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22 Jan 10 - 01:17 PM (#2818666) Subject: RE: A Wish for Autism From: Mrs.Duck Hallelujah, Wesley, couldn't have put it better! |
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22 Jan 10 - 02:46 PM (#2818734) Subject: RE: A Wish for Autism From: Wesley S "What the world doesn't understand is that if 'they' finally find the 'autism gene' and decide to remove it, then 'they' will remove future generations of the most gifted, talented people, the people who are Jewels amongst us..." And what Liz doesn't get is that if "they" finally remove the autism gene then thousands of people will literally weep for joy that it has been eraticated. The sooner the better as far as I'm concerned. And a Nobel Prize to "them" too. |
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22 Jan 10 - 03:09 PM (#2818755) Subject: RE: A Wish for Autism From: Lizzie Cornish 1 Sorry, Wesley, but I know quite a few people these days with autism, and I wouldn't want them 'removed' or not to have existed in the first place. Yeesh! I said, earlier on, that I realised autism has many different aspects, so I hoped that would be sufficient for folks to understand. We are all different though, no matter how we arrive in this world, there is not one of us who is the same. You know, your remark reminds me of a young woman I heard once, who was on the radio, giving an interview about her new book. She was born with Down's Syndrome, and of course, as you now know, they can 'eradicate' any Down's Syndrome baby these days, before it's born. She was horrified at the thought that had her mother done that to her, then she'd have had no life at all. She had done many things in her young life..but above all else, she was happy, despite the many obstacles she faced. When my daughter was around 3 years old, she fell off a wall, whilst she was surrounded by people. I was sitting right beside her, it was only a comparitively low wall, and I had friends the other side and right in front of her, yet still...she managed to overbalance whilst sitting still...The noise from when her head hit the road was heard over the other side of the street, as the street was busy with people waiting for the village carnival to go through...EVERYONE thought she was dead....including myself, so when she cried, I didn't believe it. I picked her up and ran home, and we took her straight to the hospital. We were lucky, she survived, intact...but if she hadn't, if she had been severely brain damaged, I'd have loved just as much. When I had Josh I was 40 and I had to almost shout at the doctors that I did NOT want the Down's Syndrome tests, as they kept on and on and on at me. My daughter is on the autistic circle somewhere, but it makes no difference to me at all. My brother is there too, even now realising that fact himself, as his own daughter now works in a home for autistic children recently opened in their village. My uncle, who has always lived alone. My best friend's son, with Aspergers, my daughter's friend, who even to this day at 23 still won't look you in the eye. Rosie's daughter, Daisy, who is a 24/7 lassie, needing constant care, but deeply loved by her mother and father, despite the terrible pressures and sense of loss... You can start out with the most perfect child, but it doesn't always stay that way..as many parents know, be they the parents of the child with autism, or simply the parents whose child has something else happen to them in life. The autism gene, along with the Down's Syndrome one, belongs to the people who have them, just as our own genes belong to us. Each of us is different, and important...and we each have a right to be here.. I'm really sorry about your son, and for the unhappiness and sadness it's obviously caused, but in my opinion, the autism gene should stay right where it is...and the rest of us should be learning as much as we can about autism. |
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22 Jan 10 - 03:38 PM (#2818781) Subject: RE: A Wish for Autism From: Wesley S Liz - Seriously - what is the color of the sun on your planet? No one wants to eliminate the children with autism. We want to rid the world of autism. Can't you see that there is a difference? Do you really want the autism gene out there so that other children and familys have to experience it? |
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22 Jan 10 - 04:19 PM (#2818824) Subject: RE: A Wish for Autism From: SINSULL My family has the cystic fibrosis gene - recessive, but when two recessives meet the child is positive for cystic fibrosis. I will tell these children - 5 so far although two died in agony - that they should cling to their gene, embrace it and share it whenever they can. My nephew treasures his beautiful daughter Hailey. He also prays every day for a cure to release her from the prison she is locked in -unable to speak or communicate without the help of a digital board. Imagine wanting only to be alone in your little world and constantly being driven out of it by people who insist you communicate. Autism is a vicous disability. It will be understood and eliminated in my niece's life time. I pray she he is helped in the process. |
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22 Jan 10 - 04:36 PM (#2818842) Subject: RE: A Wish for Autism From: Donuel Good intentions are being poked a bit too hard at the moment. Let me describe an epiphany I had regarding a possible cause of autism. (I tried to describe it to my sons elementary teachers but was met with the crazy person eye roll) As I would in generating a new invention, I looked at as much on the shelf facts, research and curious discoveries that I could before processing and focusing all the diverse data into a hypothesis. Mind you I am motivated by living with an autistic son for 13 years. First my conclusion: I believe the cause of autism is a protein malfunction. The protein in question is the one that uncouples/destroys duplicate neurons that were naturally formed as redundent neurons in the early development of the brain between ages 1 and 5. Experpt of some of my selected supporting facts; Redundent neuronal connections in an infants brain is part of the overall plasticity that helps to heal any damage to the brain easily as well as accelerate learning. Redundant neurons gradually diminish until few redundant neurons exist any longer and brain plasticity is at its minimum. The brains of autistic children are shown to weigh more and be more massive than normal brains. This is at its peak at ages 4-7. This could correspond to the failure to re-absorb redundent neurons. More neurons, more mass. From my own observations the symptoms of autism seems to mesh with the idea that messages are being overprocessed, sent on circuitous paths and cause overstimmulated responses to smel,l taste, noise and other stimuli. The protein respondsible for paring down redundent neurons [the "just in case extra extra" or the "back ups in case of system failure neurons"] is for some reason not being told to do its job, or is not doing its job properly, or is not being formed in the first place due to genetic, exogenetic or enviormental factors. Research needs to focus on finding this protein, understand its function more clearly and learn enough to perhaps create therapies or cures. etc etc In short autistic kids have too much brain wiring that causes thoughts and sensations to get overly jumbled and confused. That can be a very scary brain to live inside. The stress of living with such a brain can manifest itself in nearly infinite ways. This is soley my idea but as in everything else in life there has to be someone else who thinks in a similar and obvious way and has expressed somthing like this idea. Getting someone to do something about it is the problem. In my case I am married to the person who is respondsible for national programs of medical reseach specializing in child disorders. So I'm seemingly well positioned to inspire a research group to look into this matter. Especailly with stimulus funding needing to be spent. Wish me luck. Or curse my blunder, anything to help understand autism is welcomed. |
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22 Jan 10 - 05:00 PM (#2818859) Subject: RE: A Wish for Autism From: SINSULL Lizzie, I apologize for being facetious. I am trying to understand. Are you suggesting that parents should prefer to have an autistic child over a non-autistic child? So everyone here seems to have experience with a family member or friend with autism. We love, cherish and appreciate each and every one. I for one wish my niece who is barely functional were not autistic. Her parents want her to go to a regular school, go to her prom, marry, - none of these things are in the foreseeable future. Hailey attends classes for autistic children. To keep her in this world she requires daily training with specialists in her home. Every day my nephew has to make arrangements to accomodate visiting teachers - weekends too. Without it, Hailey slips back into her cocoon. The expenses, even with aid, is extraordinary. Both parents work and arrange their schedules around Hailey's teachers. Is this the gift you think is so critical to keep alive? I don't understand. She is not a savant. There is no evident miraculous artistic ability. She relies on her parents every minute just to exist safely. Mary |
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22 Jan 10 - 05:49 PM (#2818897) Subject: RE: A Wish for Autism From: Lizzie Cornish 1 "Imagine wanting only to be alone in your little world and constantly being driven out of it by people who insist you communicate. Autism is a vicous disability." Perhaps those who refuse to understand are causing the 'viciousness' Mary? I see autistic children who are sent to mainstream schools, and it is the most frightening place you can send them! They don't WANT to be with masses of people who scare the shite out of them. This mania, and it IS a mania, that now pervades society is almost out of control. I recall my friend telling me about a little boy in her playgroup, where she worked. He was terrified of the other children, didn't want to play with them, didn't want to socialise. So they forced him to. They told his parents, indeed it was even blamed on the mother, for being 'too possessive'...I tried to tell her that some children do not want to be in groups, they are happy alone, but at that time, she didn't understand. She does now. Her own son is autistic. There is nothing wrong with wanting to be alone. Nothing. If that is what you want. There is nothing in the law of humans that dictates that all of us must live in large social groups, nothing, and yet this mania now dominates and it is, quite literally, driving many children on the autism circle up the wall. So, what do they do in these mainstream schools? Do they sit quietly and learn? No, they create havoc. And WHY do they create havoc? They don't mean to, they are just shite scared and angry that they have to spend time in a place they hate. Next door to me is the home for five fully supervised autistic adults. They are classed as being on the 'anti-social' circle and having severe social problems. I only ever hear one person, and that is a young girl. Sometimes she screams and screams.....and what does she scream? YOU DON'T ****UNDERSTAND!!!!!**** YOU DON'T *****UNDERSTAND ME!***** She's dead right. They don't. I see her, nearly every day, as I stand on my staircase, in the garden, and she's looking up at me. I wave, she waves back. Sometimes she says a few words, other times we communicate with our hands, if she's in her quiet mood. She has a right to her silence. She has a right to her anger. She has a right to her life. Tell me, what if the world DID understand her? What if the world had treated her differently from the day it was known she had autism? What if she hadn't had to go to school, become bewildered, terrified, angry? What if she'd been allowed to live a simple, quiet life, surrounded by people who understood how sensitive she was, how so many things 'hurt' her? What if.........? Do you think that then, she may not have ended up in a home where she has to scream "YOU DON'T UNDERSTAND ME!" to people who are supposed to be her 'carers'? "Do you really want the autism gene out there so that other children and familys have to experience it?" Kimmy would not be without her Ben. Rosie would not be without her Daisy. Autism is something which has touched their world deeply, but it has also touched their souls deeply, made THEM the women they now are. It has made them so caring and compassionate towards others who need that compassion, and it has also made them fighters and warriors for their children when they meet with 'official' people who profess to care but who really don't give a fuck. So without the autism gene, there would be no Bill Gates, no Stephen Spielberg, many of our Great Artists, some of our best Musicians and Songwriters, our most Creative People. Here.....in this important and inspirational film you will hear a very different language. The first part of it is in the language of the lady, Amanda Baggs, herself, and the second part is where she tells you what her language means. Ananda is autistic. 'In My Language' From that link "....The thinking of people like me is only taken seriously if we learn *your* language..." It is way past time that we learnt the Language of Autism, as we should all learn Sign Language and Braille...taught from kindergarten upwards, so that it as natural to us all, as our own language. We are not the ones who should be dictating that EVERYONE *must* be defined by OUR rules and regulations. There ARE no rules and regulations. And listen to what she says about people regarding her as being confusing, when it is actually THEY who are confused because they do NOT understand and refuse to. The Autism gene has the right to live, as does every person who has it running through them...and if people cannot understand that, after watching Amanda Baggs (from the video) an Autism Activist Amanda's site |
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22 Jan 10 - 06:00 PM (#2818907) Subject: RE: A Wish for Autism From: Lizzie Cornish 1 Donuel, you and I agree totally on the over stimulus. I think your research is wonderful! This over stimulus, I've realised is not just in the autistic brain, but also in the dyslexic and dyspraxic brain as well. My friend is dyspraxic and she over worries about everything, her sense of smell is profound as is her sense of touch, of being touched, and her vision is incredibly acute. She can do many things at once, especially driving, where she can drive whilst taking in EVERYTHING that is happening on both sides of the car, window wise...It frightens the beejayzus out of me at times! :0) She remembers everything people say..and once, I was talking to her in the street, and I noticed that she noticed EVERYTHING! She was waving to people in cars, saying hello to people on the street, noticing who'd walked past on the other side of the street, the smells she could smell, what she could hear...ALL whilst talking to me. Her senses never stop. She sleeps with earplugs in, as she hears everything...her sense of taste is acute too. You are most definitely on to something here, and at times I get so damned frustrated because the solution is out there and it's staring us in the face!!! It is all so damn easy to see..... But the sense of deep fear, the ever pervading fear, which comes from the over stimulated mind and senses is the thing that causes such distress to so many autistic people, I feel. I really hope, with all my heart that you and your wife are able to take these thoughts of yours and move them forward, and if you ever need anyone to shout and scream to the rooftops, on your behalf, then I'm right here! |
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22 Jan 10 - 06:00 PM (#2818908) Subject: RE: A Wish for Autism From: Wesley S "The Autism gene has the right to live" You are SO full of crap. And like many autistic people you live in your own little world. Far be it from me do drag you kicking and screaming into the real world. |
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22 Jan 10 - 06:08 PM (#2818914) Subject: RE: A Wish for Autism From: Lizzie Cornish 1 "Her parents want her to go to a regular school, go to her prom, marry, - none of these things are in the foreseeable future." Why do they want her to go to school? It's not that important, truly, Mary. If she did not have autism she may still choose never to marry. They must learn to love their daughter with utter freedom. Her life is hers, and it is important. They may feel she is barely functioning, but watch Amanda's film, read her site and you'll learn a very different story. It is not what WE want for our children that matters, but what they want for themselves. I have always told my children that whatever they choose in life, that's fine by me, whether it be to marry, to remain single, to live with a donkey, to stay at home, to leave....whatever they want. School is not important, nor the Prom, nor even marriage...and whilst it would be nice to have grandchildren, it is not on the horizon for us all. Hailey is their much loved child, and they are blessed to have her, even with all the complications, but if you let go of some of the complications, some of the desires, then life gets just a little easier. I wish them all well, Mary...and I didn't take offence at your words earlier, not at all. I just wish I could help take some of the pain away for them all. |
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22 Jan 10 - 06:09 PM (#2818916) Subject: RE: A Wish for Autism From: Donuel My language like my son's was one in which everything was abbreviated. While it made perfect sense to me, other people did not make the same cross references that seemed obvious and damned clever to me. My son was mainstreamed to his benefit. The kids tease him by chanting his name in the fashion of Norm walking into Cheers, but it doesn't bother him. He likes it. Regarding the "autism gene". There ain't no such thing. IT is neither identified or assumed to be causal. If there is an positively identified autism gene please let me know. The wonderful sentiments, campassion and empathy regarding the real life respect and love for autistic children expressed by Lizzie is moving. Accomplished people in history who emerged from autism with only delayed speech are the lucky ones. The severe cases are brutal. Inside a confused over reaching consciousness of a severely autistic person are so full of anguish that the person may only be able their attention by abusing themselves. Yes even pain is preferable and relaxing in comparison to a screaming world of every nerve desperately seeking some clarity. I have no qualms with some form of sedation therapy for those who need it. |
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22 Jan 10 - 06:09 PM (#2818917) Subject: RE: A Wish for Autism From: Lizzie Cornish 1 "You are SO full of crap. And like many autistic people you live in your own little world. Far be it from me do drag you kicking and screaming into the real world." I'm not autistic, Wesley. I have it in my family though. Tell me, is YOUR world the *real* one then? And if so, by what right do you deem that to be? |
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22 Jan 10 - 06:14 PM (#2818922) Subject: RE: A Wish for Autism From: Wesley S And yes - I would trade away every Stephen Spielberg movie in a heartbeat if it meant my son could talk and not wave chopsticks in front of the TV. I've sure your "stance" makes you feel like Donna Quixote but all you've managed to do is piss off someone like me who lives with autism IN OUR HOUSE every day. Maybe if austism lived next door and I was able to wave at it and say hello from time to time I would feel differently. Probably not. |
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22 Jan 10 - 08:53 PM (#2819036) Subject: RE: A Wish for Autism From: Wesley S "Tell me, is YOUR world the *real* one then?" Actually - Yes it is. And 149 out of 150 people would agree with me. My job as a responsible parent is to make sure that my son can live in and cope with that world. My goal is to make sure he can survive and be self sufficient after we are gone. |
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22 Jan 10 - 10:00 PM (#2819063) Subject: RE: A Wish for Autism From: olddude My goal is to make sure he can survive and be self sufficient after we are gone. The sincere wish of every family for sure is that this will happen. I also was told by one of the big autism foundation that the stress put on a couple dealing with sever autism results in an 70% marriage breakup. It is a family tragedy for sure for everyone involved. The latest stats say 1 out of every 92 male children .. we are losing a generation of our kids |
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22 Jan 10 - 10:13 PM (#2819068) Subject: RE: A Wish for Autism From: ragdall Here.....in this important and inspirational film you will hear a very different language. The first part of it is in the language of the lady, Amanda Baggs, herself, and the second part is where she tells you what her language means. Lizzie, Thank you for posting that link. The message is very powerful and worth consideration. I posted the link on my school district teachers' message board for educators to see. rags |
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22 Jan 10 - 10:23 PM (#2819075) Subject: RE: A Wish for Autism From: catspaw49 I have stayed away quite purposefully from this thread, partly because I have been at this now for 18 years.......yeah, Tris is going to be 18, hard as that is to believe. I really don't want to play here, but Wesley is absolutely right and if I can back him up here, I will. "My goal is to make sure he can survive and be self sufficient after we are gone." This is the job......This will not change. I have seen some good info on this thread along with some of the deepest horseshit and misinformation imagineable. The idea that autism can include so very many and exceedingly different symptoms is foreign to most people. autism affects each one in a different way depending on other significant factors. It is many things, but it is no gift any more than it is always a sociopathic disability. I have 2 kids. One is a borderline sociopath controlled by meds and the other developmentally delayed (that's a real dumbass phrase btw, is he going to catch up?)......the one has nothing diagnosable by the autistic spectrum, the other has many but he's nowhere close to sociopathic. That's a stupid simplification and I should erase it. Yet I think I'll let it stand. What I'm driving at is that there is no single bright line to explain autism. If I had to think of something that is somehow in common across the board, its fear. I'll let Wesley and others tell about their own children, but let me tell you about Tris. It took some time for us to identify the reason as fear because Tris is a happy kid. Yeah....He is! AND....He relates well with others and is extremely well liked. It is no exaggeraration to say everyone loves Tristan. But the fear of not knowing EXACTLY how and when things will happen..........yeah........Karen and I refer to it as "Rain Man Syndrome.".....but it really is no joke. Tris has significant delays/retardation and also a major wpeech problem but what gets to him is not knowing his "schedule." When are we gong to Aunt Connie's Daddy? Saturday When Saturday? Oh, I guess we'll leave about 10. Are we going to stop at McDonalds? I dunno'.....we'll see. When? Well, Saturday..... Are we coming home Saturday. Yeah, unless something else comes up We stay at Aunt Connie's? No, we'll come home probably. Saturday? Yeah Daddy? Yeah? Are we going to Aunt Connie's Saturday? Yeah What time? Like I said....about 10 On Saturday? Yeah Are we coming home Yeah Saturday? Yeah Daddy? Yeah Are we going to McDonalds on Saturday? OKAY....OKAY.....Tris....listen Okay We're going to Aunt Connie's at 10 o'clock on Saturday and we'll stop at McDonalds. We'll come home that night. Saturday night? Yeah We go to Aunt Connie's Saturday? Yes Tris....We go to Aunt Connie's at 10 on Saturday and we'll stop at McDonalds and come home that night. Got it? Okay Daddy This conversation will be repeated at least 4-5 times a day every day til we go. Seems silly but what that really is is fear. He takes great comfort and has the need for routines and schedules. In some ways that thing has worled well for Tris because we identified it and built it in to many of his everyday hours and his school time as well. But if you want to see a serious panic scene.....vary the routine. The only gift part of this is in the way a lot of people have worked hard to make it useable to Tris instead of a liability, but liability it certainly is. And that's just one small part.......and the least serious part of Tristan's problems.....and problems they are. There are also serious pitfalls for him with even that seemingly innocuous problem. Others are larger by far and potentially more damaging in the long haul. Using language to give things a better face just pisses me off. Developmentally Delayed my fuckin' ass.....................I'm also sick to death of assorted experts telling us what these kids like Tris and Weley's son are thinking and why. MAJOR BULLSHIT!!!!! I'm not Black but if I want some idea of the African American experince and situation, I can read many books and talk to people who are. Same as with someone who is blind or deaf.....I can't be them but I can get an idea about what it may be like for them. People like Tristan don't write books and there is no use asking what they're thinking or questions about their relationship to society. Stop this sillyass generalizing and candy coating. Every situation is different. Spaw |
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23 Jan 10 - 12:03 AM (#2819127) Subject: RE: A Wish for Autism From: GUEST,leeneia Thank you, spaw. Thank you very much. You are such a brave, GOOD man. |
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23 Jan 10 - 04:10 AM (#2819186) Subject: RE: A Wish for Autism From: Lizzie Cornish 1 "I've sure your "stance" makes you feel like Donna Quixote but all you've managed to do is piss off someone like me who lives with autism IN OUR HOUSE every day. Maybe if austism lived next door and I was able to wave at it and say hello from time to time I would feel differently. Probably not." If you read my posts, instead of exploding over them, you'd see that autism doesn't just live 'next door' it lives all around me. My daughter is on the circle, as is, I think, my son. My late father-in-law barely held a conversation with me in the 20 years that I knew him. He was like this with everyone, but Vi, his wife, who now lives with me, despite my divorce, looked after him like a child. She never questioned why he was like this, it was just the way he was, and that was that. Vi herself is very much as Spaw describes above. She is filled with fears, always has been. Going outside, for her, is a totally fear filled situation. When she did used to go out, (no longer, as she's now 95) she'd literally do it all by routine. The taxi HAD to be there at midday to pick her up. If he was a few seconds late, she'd start to panic, absolutely panic. She'd go to the same shops, on the same day, at the same time. Even to this day it makes no difference if its Christmas Day or not, if that happens to fall on Washing Day, so be it..the washing still has to be done. She has lived her entire life this way. Holidays were spent in Holiday Camps, where again, there was a routine, so she'd know exactly what she was doing each day. Even recently, when she was so sick, with the flu, she HAD to get up and do her routine, because without that routine, she is sunk. Sunk deep in fear. She was terrified of moving into a home for the elderly, literally terrified, as she *knows* that 'they kill of the oldest people first' and nothing you say will convince her otherwise. Lunch is at 1pm. Tea around 7pm. I have got her to relax a little about tea. However, when she used to cook for herself, in her own house, she would have every meal at exactly the same, precise time. She never invited friends in to her house, as that is 'not what a house is for' in her mind. Strangers stay outside. Homes are where you are safe. Holly, another friend of my daughters. The most beautiful child you've ever seen. She is exactly as Spaw has spoken of above, about his son. "What's for tea? When are we having it? What are we doing when we've finished it? What are we doing tomorrow? When? Where? Why?" The fear dominates, the timetable helps the fear a little, as it leaves far less room for the unpredictable. My daughter told me only recently that when she was at school she would make 'escape plans' in her head for the worst case scenario happening, be it the bullying, the teachers screaming at the bad children, the bad kids being put next to her due to her quietness..... When she'd made her plan, she felt safer, just a little safer. As a child, even if I raised my voice just a fraction, she'd be in tears. Imagine how she felt when stressed out teachers lost it with stressed out children, many of whom should were in the worst place they could ever be in. Until people understand the overwhelming, all consuming FEAR that lives inside so many people on the autism circle, and then find ways to alleviate that fear, things won't improve. Many autistic children do need a 'cotton wool world' around them, where they know what is going to happen each day and where they feel safe. By insisting that so many children on the autism circle go to mainstream schools we are damaging them beyond belief, because far from 'giving them a normal life' we are putting them into the worst situation they could possibly be in. Not only that, but it is having a huge effect on those children without autism, who see the anger, the 'bad behaviour' and copy it themselves, thinking "Well, if he/she can get away with it, then so can I!" and so it spirals out of control and ONE teacher is left to deal with it all. Of course, the 'bad behaviour' is simply the fear coming out, and the fear, understandably, turns to anger pretty damn fast. Children with autism should not be in mainstream schools. They are there, in this country, because of one woman's crusade for ALL children to have mainstream education. She has now admitted that was a very wrong idea. They are also there because parents, who perhaps haven't yet come to understand the fears inside their children, want (quite naturally) their children to have a 'normal' education. Well, a normal education, for many autistic children is a one to one education, in a safe, quiet controlled environment, where they are not having to deal with almost life and death situations all the time, surrounded by thousands of children whose expressions and actions they do not understand, and surrounded by children who so often bully and ridicule them. I was told, by a stunned teacher, how 'sensitive' my child was. It was said to me almost as if it were a crime. She didn't know what to do with a sensitive child. I guess it's because so often her working environment is about 'de-sensitising' a child. So yes, Wesley, it lives with me, in my children, in my brother, in my uncle, in my marriage, even though that marriage is now no longer. I am truly sorry about your son. I know, as in many cases, that there are totally different extremes of autism, from the very mild to the terrible, but I still feel that removing the gene is not the right thing. For me, the way forward lies in being able to 'tune down' the brain, to stop the over-sensitivity, so that sounds become of normal level, vision, smell too..and thoughts become slower, sleep becomes not filled with nightmares.. Kimmy was terrified of her son when he was 10. Now, he is 16 and far more able to cope with life, as I stated above. Her husband also has Aspergers, and at times he becomes pretty darn cruel to her, but she has learnt to accept and to cope, because she loves the times when he isn't like that, and being a nurse she has researched it all, knows what surrounds her. Her wish too is for Ben to be able to live his life when they are gone. She does her best. It is all she can do. It is all any of us can do. For those who are interested, there is a brilliant book out there called 'An Asperger Marriage' which is written by a husband and wife, chapter by chapter. He has Aspergers, she doesn't...and it is the story of how they plough their way through a rocky field. They are still together because each has come to understand the other. When her husband finds talking beyond him, he'll go into his study and send her emails, emails filled with love and affection...and she has come to know that he loves her, even if he only tells her once a year or less. It's a very touching book. An Asperger Marriage by Gisela and Chris Slater-Walker Autism - a different perspective And here is one of the loveliest and wisest people on Youtube. He is autistic and he is DETERMINED to get the world to understand what goes on 'inside autism'. He has made a range of videos and is now writing a book. I'd recommend that everyone watches all his videos, because each one teaches you something new. In this one, Wolf talks about how parents need to let to go of their guilt, anguish and self blame. It is a wonderful video, for a wonderful, brave and intelligent man who has experienced some terrible things in his life. I hope it helps some people. Autistic Werewolf - His Videos |
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23 Jan 10 - 05:31 AM (#2819217) Subject: RE: A Wish for Autism From: Lizzie Cornish 1 Donuel, a video you may have seen, but if not, it might interest you. Temple Grandin, talking about Sensory Overload in autistic children. Sensory Overload |
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23 Jan 10 - 10:19 AM (#2819426) Subject: RE: A Wish for Autism From: GUEST,leeneia Thanks for the link, Lizzie. I had to point out to my husband that in the audience one can see 13 women and one man. Yet who's in charge of the budgets and the programs? Men.) |
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23 Jan 10 - 10:35 AM (#2819442) Subject: RE: A Wish for Autism From: olddude Here is my beef, a sick child, any sick child and the community comes out in droves to help .. we have fund raisers and chicken bbq's and rally as we all should for any sick child with cancer or anything else for that matter. A family that has a child with severe autism, people look at them with disgust in a store when the outburst occurs. I watched one young mom with tears screaming HE IS AUTISTIC CUT ME AN F'IN BREAK OK ... my heart broke, the more awareness the better, the more compassion the better, the more support, the better. The more autism is discussed the more understanding and compassion folks will have. It is a terrible hard road, I could go on a thousand years with horror stories, Like how my friend 6 months pregnant lost her baby when her 8 year in a autism fit kicked her in the stomach and nearly killed her and did kill the baby ... and it wasn't his fault .. it was autism .. that is the tip of the iceberg some even worse ... and little help from anyone .. most face it alone ... completely alone ... and most lose their spouse over it also ... |
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23 Jan 10 - 10:46 AM (#2819452) Subject: RE: A Wish for Autism From: olddude If you live in the states, look into a program in your area called "Project Lifesaver" the police put a tracking device on your child with severe autism so if he or she wanders off, they can find them quickly. It is a really cool looking kids watch in different colors. That is the other thing, I know of children that have in the blink of an eye wandered out of their house or even their school only to end in tragedy ... Project Lifesaver is a great program and free for people who have had problems with their child wandering out or even adults with dementia. You can find info it on the web. |
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23 Jan 10 - 11:00 AM (#2819463) Subject: RE: A Wish for Autism From: olddude No child should have to go through this, no family should go through this, I won't go on an on anymore ... it is sufficient to say that if I were given a choice, my life to end autism, I would gladly say, take me now God I am ready .. so much pain ... so many horror stories |
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23 Jan 10 - 12:09 PM (#2819577) Subject: RE: A Wish for Autism From: Wesley S "Children with autism should not be in mainstream schools." This would accomplish two things. First - the kids with autism won't have to mingle with "normal" kids. And "normal" kids don't have to mingle with autistic children. That's two different learning situations that would be eliminated. Then we can move on to building different schools for blacks and muslims. Maybe even build whole villages for autistic kids - on the edge of town so they can lead seperate lives. We just need to figure out if the kids in wheelchairs will stay there too. After all they are different and unique. "If you read my posts, instead of exploding over them...." I explode over your posts BECAUSE I read them. It's really pretty easy. |
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23 Jan 10 - 01:50 PM (#2819675) Subject: RE: A Wish for Autism From: Bonzo3legs There was a wonderful song written by Richard Thompson 30 years ago called Speechless Child, all about Autism. |
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23 Jan 10 - 03:05 PM (#2819723) Subject: RE: A Wish for Autism From: Lizzie Cornish 1 Wesley, those words are taken out of context, because you haven't included the reasons why I said that. I don't want an argument with you. I said what I said above because I really do think it's is severely damaging and so often terrifying for many autistic children to have to endure mainstream schools, for the reasons I stated above. I would LOVE to feel that children without autism understood children with it, but so often I'm afraid they don't. They haven't a clue. So, they are mean, cruel and bullying towards them. Hell, how can the children understand when the adults don't! And so often even teachers and carers haven't a clue! I know. It's why Ben ended up on the outside of his windowsill, age 10, wanting to end his life because he couldn't take the bullying any longer. I told Kimmy to take Ben out of school that same day. She did. He was at home with her for a while, but that was dangerous too, as he was still suffering the fallout of school and all the horrors he'd had to endure whilst there, so he was aggressive towards her. Sure, he lashed out, because he was bullied...and he lashed out bigtime at school, because his fear grew ever stronger, understandably. She did the rounds, went to every school in the area. None of them wanted to take him really. They all said they didn't have the staff or the funding or faclilities to cope...Meanwhile, she was left to cope entirely on her own, with a 10 year old child she was frightened of. Then, her father-in-law stepped forward and said he'd pay for Ben to go to a private school, one that only took children with severe dyslexia and autism. One of the few in this country. So, Kimmy started her 2 hour round trip, twice a day, to get him there, knowing how lucky she was to be able to do this, as Ben's grandfather is a wealthy vet. No way could she have afforded to do it herself. Within weeks the change in Ben was huge. The headmaster understood autism from the inside out...but he made no allowances for shitty behaviour and the children knew this, got to learn it fast. He expected loyalty and hard work from them, and gave it back ten fold, through his staff and his teaching regime. Yes, Ben still acted up now and then, but he got into trouble for it bigtime. He received far more praise than discipline though, and eventually the praising has won. Now, at 16, he is able to come and stay with my young lad, down here, on his own, as I mentioned above, and he was a joy to have around, where once he was a nightmare. He has had no bullying to endure because all the children are on the circle so they don't make fun of each other, or treat each other cruelly. They don't feel 'different', they just 'go to school' In an ideal world it would be wonderful if mainstream school suited all, but it doesn't and it never will. Some parents need to recognise that wanting their children to go to 'ordinary' school is actually only the best for the parents themselves, not for the children, because they want to feel their children are *able* to go to ordinary school, thus making them like everyone else. Maybe you missed this video earlier, but it shows what happens to so many autistic children in mainstream school. It was made by the National Autistic Society themselves, so it ain't just me making it up or not understanding the situation, and you can actually listen to some young autistic people themselves telling their own experiences...Heartbreaking and anger making. 'Think Differently' Given a choice, I bet they'd have wanted a very different young life. Hardly surprising they're often kicking and lashing out all over the place, or curled up in silent misery, when they are being constantly made to endure even more fear and pain, by people who haven't really got a clue what is happening to them or how it is making them feel, how they even feel in the first place. There are not enough schools in this country, or the US either I'd imagine, such as the one Ben goes to. They should be state funded, free and available to all autistic children and their parents. I do not understand why, when this is now something that affects SO many families that both the US and UK Governments are pretending it's not happening. They should be falling over themselves to build schools, train people, get the message into mainstream schools, teach ALL children and ALL adults as much as they can, as fast as they can. They should also be doing mega amounts of research into the cause of autism and the reasons why it is so hugely on the increase. And every parent of every autistic child should be given absolute support in every way possible, both emotional and financial, because the cost to the country, and the families, of broken marriages is far, far higher than they would have to pay out to help people in the first place. |
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23 Jan 10 - 03:11 PM (#2819731) Subject: RE: A Wish for Autism From: Lizzie Cornish 1 And the other side of the coin is this.... My friend's daughter was thrown against a cupboard by a young lad in her class. He was on the autism circle. He put his hands round her neck and was trying to strangle her. Luckily, the other kids managed to help her break free and the young lad resorted to pulling the cupboard door off it's hinges instead. They kept away from him...and no, I've no idea what started his anger off...but being surrounded by faces you can't read, being frightened all the time must be absolute hell. The teacher held the rest of the class back at the end of the day, after the attack, telling them how they had to be sure to include this young lad, as it wasn't his fault. No, it wasn't his fault, but what of the young girl who was terrified witless? What of her friends who saw it happen? No thought was given to them...and so the anger and resentment towards autistic children grows... If that child had been brought up in a school where he was understood, where there were very small classes, and all the children were on the same circle then he may never have had to scream, kick, tear, destroy, because he may never have had to face such fearful situations on a daily basis for YEARS! Sheesh, what a terrible thing to do to any person, make them endure that feeling, endlessly. Long and short is that he'd be far better off on a one to one basis, feeling safe with a small amount of people, having no pressure put on him because he IS surrounded by people who understand him completely and who go out of their way to help him whilst gently starting to include him into wider society bit by bit. What makes me so angry is that this terrible fear is there from the start and then...the so-called 'Intelligent People' go and make it 100 times worse because they've not a clue what it's like to feel so frightened that you simply want to curl up into a ball, put a blanket over your head and hide from the world.... And whilst I know that gently educating children to accpet this is not the way forward, I also know that throwing them into factory farm schools, which are already destroying many 'ordinary' children who cannot cope with the desensitivity, is the WORST thing you can do to someone whose life is dominated by fear. |
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23 Jan 10 - 05:17 PM (#2819853) Subject: RE: A Wish for Autism From: Lizzie Cornish 1 Just found this video too, which again, is very inspirational: Dr. Temple Grandin's Story |
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23 Jan 10 - 06:41 PM (#2819894) Subject: RE: A Wish for Autism From: Bonzo3legs Let's home that Cameron will change things for the better. |
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23 Jan 10 - 08:56 PM (#2819974) Subject: RE: A Wish for Autism From: Wesley S My wife and I had a very pleasant lunch one day with Temple Grandin. A very bright woman indeed. And she loves to sing "Stairway to Heaven" too. Her singing voice won't win any awards. Thank goodness she wasn't locked away or sent to "seperate but equal" schools like Lizzy proposes. She would have withered on the vine. By the way - HBO will air a biopic about Temple Grandin in February of 2010. That's next month. |
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23 Jan 10 - 11:49 PM (#2820037) Subject: RE: A Wish for Autism From: Donuel Spaw described a verbal encounter in the car so beautifully I was there in the car listening. I have to say that sometimes the literalism gets to me and I have to be sure to control myself from saying somthing I would regret. It has helped me however by forcing me to become far more explicitly clear than I have ever been in my life before. Its like I now know why Rabbi's talk the way they do. HUmor can be a tough concept for the mildly autistic. My son at times reminds me of Data (STNG) proudly learning humor. Its both curious and precious. |
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24 Jan 10 - 03:55 AM (#2820086) Subject: RE: A Wish for Autism From: Lizzie Cornish 1 "Thank goodness she wasn't locked away or sent to "seperate but equal" schools like Lizzy proposes." Wesley, please....I am not advocating 'locking' anyone, anywhere... I've already told you about Ben's school, the difference it's made to that young man, and it's moved him from wanting to kill himself, to wanting to study photography and other things he now knows he is GOOD at. It has given him his life..and last night I talked to his mother, who told me over and over that they had made the right decision for him, but knew how incredibly lucky they were to have that opportunity in the first place, and how sad they were that so many children in this country may never have the same chance as Ben. Also, Temple Grandin states in the main video there that she was raised in 'a different time' when behaviour was very strict. Her mother was very strict, as was her school, so no children would have dreamt of behaving as they do today. Schools would not have had the same outrageous and unhappy behaviour that goes on now, and that behaviour is now with us for many reasons, not just the lack of discipline.....You watched, I hope, that video from the National Autistic Society, where the modern and very real story of what now happens in schools is all too apparent. And did you know that Ben's school now even has special cushions for all the children to sit on which constantly 'move' them around the merest fraction. They've learnt that for many autistic/dyslexic children to sit still is almost impossible...and by schools *insisting* that they do this, their concentration goes into keeping their bodies still, rather than what they are trying to learn. The cushions move them almost without them realising, but what this does is take over from their brain having to focus on doing that, leaving them free to learn. Many dyslexic/autistic children constantly move and sometimes it's because that is the ONLY way in which they can get their world to stay 'still' because for them it is constantly moving when they are made to sit rigidly still by folks who are completely and ridiculously rigid in their outlook. I have never understood this mania for children to sit still.... My nickname when I was a little girl was 'Wrigglebottom' because I was **never** still, and even to this day I move around a lot, so I understand entirely the benefits of a cushion that would stop my brain from having to redirect any thoughts anywhere else..(and yes, I can see you lot smiling and coming out with the naughty jokes) ;0) I'd say that some of our best comedians are on The Circle, Donuel, purely because they've almost had to 'study' humour from the inside out, so they know what makes people laugh, they watch, they observe, they learn...Think of people like Tony Hancock, Rowan Atkinson, Stephen Fry, Billy Connolly...so many of them have a desperately sad side and yet they are also supremely intelligent and funny. The Circle is wide and includes many different creative people on it. And think on this.. IF the autism gene had been removed from our genetics over a hundred years ago, then Temple Grandin would not have been born as she was. She would not be the person she is today. She would not have the ability to go out there and teach thousands, hundreds of thousands of people about not only their own autistic children, but about how we ALL think, how different we are. She is an amazing woman and it is her autism that has made her so amazing, along with her mother, her school, all who surrounded and helped her along the way. I am not denying that autism often brings tragedy, I understand that..but it also brings incredible inspiration. And so many of the autistic people that I know, despite the confusion and anger that flares up sometimes, are also amazingly kind, talented, intelligent, honest and loving. |
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24 Jan 10 - 06:40 AM (#2820157) Subject: RE: A Wish for Autism From: Dave the Gnome I have a nephew with an autistic son and we did a lot of concerts at a school for children with lots of different 'gifts', as Lizzie calls them, where the children were in attendance. Apart from that I know little about autism. What I do know is that you are fighting a loosing battle, Wesley. What is meant by 'If you would read my posts' is 'you must agree with me'. You have now joined the ever growing group of 'Lizzie bashers' I'm afraid. Not that it is a bad thing to disagree but this will be brought up in some future post when you least expect it;-) All the best from one with the gifts of Asthma, Perrenial Alergic Rhinitis and Reflux disorder. I am indeed truly blessed... :D (eG) |
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24 Jan 10 - 06:49 AM (#2820168) Subject: RE: A Wish for Autism From: Folkiedave I have the gift of high blood pressure. Fortunately it's controllable with drugs. I also have the gift of exercise-induced asthma. Which is remarkable considering how little exercise I do! Drugs can help. They are the only gifts I have. Anyone else with special gifts? |
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24 Jan 10 - 08:08 AM (#2820228) Subject: RE: A Wish for Autism From: Ruth Archer So now Lizzie has diagnosed Rowan Atkinson, Billy Connolly and Stephen Fry as autistic. I'm sure they would all welcome her expert knowledge, but should such diagnoses not be left to - oh, I don't know - medical professionals? Out of interest, Lizzie: you now claim that your own children are autistic. Interesting. When did they receive their diagnoses? Your in-laws: were they, too, diagnosed autistic? You've previously claimed that your entire family is also dyslexic. When did you receive your own diagnosis of dyslexia? As it is unusual for someone in your generation to go through all the formal testing which has only recently become the norm, I am genuinely intrigued. Since the advent of the internet, many people self-diagnose (and, it would seem, diagnose their whole families and celebrities whom they have never met). There are lists of symptoms to suit just about every trait, every personality type in the world, and if one is really keen to wear a label (for whatever reason: attention-seeking, feeling that one is "special" or has unique "gifts", to excuse a lack of achievement or ability, etc) you can damn well find one. It ain't hard. And you know what? If that's how you get your jollies, fine. But please distinguish, when trying to compare your situation with that of parents coping with the realities of profound autism autism on a day-to-day basis, between your situation and theirs. They DO know what they are talking about. You cannot possibly hope to truly empathise with their every day experiences while you have two happy, healthy children who will go on to lead normal lives. For their kids, this will never be a reality. Stop patronising with your talk of "gifts", and stop preaching to them, and just for once, start bloody listening. |
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24 Jan 10 - 09:16 AM (#2820274) Subject: RE: A Wish for Autism From: Ruth Archer What a shame the following post just went missing - it made soem interesting points: "I do not understand why, when this is now something that affects SO many families that both the US and UK Governments are pretending it's not happening. They should be falling over themselves to build schools, train people, get the message into mainstream schools, teach ALL children and ALL adults as much as they can, as fast as they can." There is a great deal that you appear not to understand Lizzie Perhaps you might like to read the details of The Autism bill which passed its final stage in the House of Lords on 22 October 2009 to become England's first ever disability-specific law. Once it receives Royal Assent, the Bill will officially become the Autism Act, under which the Government's forthcoming adult autism strategy will be legally enforceable and must be published within the next six months. Under this new law, the NHS and local authorities will have to provide diagnostic services for adults with autism and better training for health and social care staff, and they could face legal action if they fail to provide appropriate support for people with autism. |
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24 Jan 10 - 10:11 AM (#2820301) Subject: RE: A Wish for Autism From: Wesley S What it boils down to for me is that I can only be an expert on autism as it exists for one person and one person only. And that's my son Brendan. Because I have a lot of personal experience with him. I know nothing about anyone elses autism. So when I see Grand Pronouncments with Lots of Capital Letters about Everyone with Autism and their Special Magical Mystical Gifts it really chaps my ass. Walk a mile in my shoes and THEN tell me my son should not be in a mainline school. Even though everyone else { and I'm talking about degreed professionals} who actually knows him and works with him on a regular basis agrees it's the right thing to do. Others should just shut up.If they want to talk about their own personal experiences that's fine. Just don't tell me what to do. Ever. |
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24 Jan 10 - 11:12 AM (#2820347) Subject: RE: A Wish for Autism From: Bonzo3legs Speechless Child is on the Doom & Gloom cassette which I cannot find. I last saw it around 1986, it must be there somewhere??? |
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24 Jan 10 - 11:12 AM (#2820348) Subject: RE: A Wish for Autism From: SINSULL I understand a bit where Lizzie is coming from. When my nephew called with Hailey's diagnosis of autism he was so distraught. I said to him "Hailey is the same beautiful child you loved before the doctors gave you the diagnosis. Nothing has changed." As far as loving and cherishing Hailey exactly as she is, both her parents adore her. What Lizzie doesn't seem to get is that left to herself Hailey will sit in a corner and rock and get lost inside herself. There is no artistic gift there. There is no chance of ever surviving on her own. No parent wants this for their child. What does Hailey want? We haven't been able to reach her and know. That is the tragedy of autism. Like Welsey, this is my main experience with autism. I wouldn't presume to tell anyone else what theirs is or how to respond. |
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24 Jan 10 - 01:02 PM (#2820398) Subject: RE: A Wish for Autism From: Mrs.Duck I am angry with myself for getting into this debate as I would rather stay out of anything involving Ms Cornish but I feel I have to have an imput. Firstly, the idea that mainstream schools are a life or death experience full of anarchic children is an insult to a profession that,with a few unfortunate exceptions, aims to give every child the opportunities to develop their full potential. Any child with a special learning need will be given support and intervention to enable them to access the curriculum and develop. Children at the lower end of the autistic SPECTRUM can and do cope very well in mainstream schools often with IEPs and additional support. If it is felt that the child would benefit from a more specialist environment then schools such as the one I work in (or some that deal with more severe disabilities) would be the place for them. In these environments the children are taught to understand the world they live in, to recognise facial expressions, to work with other children and to gain the sort of life skills that may help them to live as independent lives as possible in the future. Some of these children may never be able to live alone but we work with care and understanding to enable them to do things for themselves wherever possible. We also teach them that certain behaviour is unacceptable and help them to find ways to deal with the anxiety they experience when routines are changed or they don't get what they want. If a child has a gift or talent for art, music, maths writing or whatever this is encouraged and developped but they are also given access to all other areas of the curriculoum. When talking about autism, as Wesley has already said, we are talking about a vast number of different conditions. The term spectrum (I have never heard it called a circle and find the term meaningless) is used because there are three impairments that have to exist for a diagnosis of autism. •Impairment of social relationships and social understanding •Impairment of social communication •Inflexibility of thought and social imagination If you see these as the 'primary colours' of autism and then imagine mixing those colours to make the myriad of hues and tones you can see how one person with asd could be very different from someone else with asd. Whether this is a blessing or a curse rather depends on where you or the person you care for are on the spectrum. For some autism is a release and for others a prison. Yes, there sould be more awareness and education about autism but it is not always appropriate to accept certain behaviours and help needs to be given to help people modify their behaviour so that they can live safely in the community. No disability (and yes I do regard autism as a disability) should be used as an excuse for inappropriate behaviour although it may be an explanation for it. People with asd do not have a label round their neck to tell those who don't know them what their needs are so they need to learn how to act within certain limits. Lizzie, you are the embodiment of the phrase 'a little knowledge is a dangerous thing' as in my opinion you certainly have little knowledge. |
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24 Jan 10 - 03:17 PM (#2820490) Subject: RE: A Wish for Autism From: Lizzie Cornish 1 "I am angry with myself for getting into this debate as I would rather stay out of anything involving Ms Cornish but I feel I have to have an imput." Thank you for your kind words. "Firstly, the idea that mainstream schools are a life or death experience full of anarchic children is an insult to a profession that,with a few unfortunate exceptions, aims to give every child the opportunities to develop their full potential." OK, tell that to my daughter, who watched the sixth formers pouring hot drinks down on the first formers in Tavistock College, where the teachers have walkie talkies to communicate with each other, and march the children off to cooling down rooms. Tell that to my daughter, who, being quiet and shy was always put next to the children who were angry and aggressive. Tell that to my friend's daughter who was thrown against a wall and half strangled by a young lad with autism, and that poor lad was probably doing that because he was in a blind rage brought on by fear, through being in a place that may well have driven him half crazy with anxiety...but no-one ever thinks of it that way! Tell that to my son, who had the same thing happen to him, leaving huge red marks on his neck. Tell that to Ben, who, at 10 years old, as stated above, wanted to throw himself off his windowsill, because school was such a catalogue of utter horrors for him, with his autism, where he was bullied half senseless! "Any child with a special learning need will be given support and intervention to enable them to access the curriculum and develop. Children at the lower end of the autistic SPECTRUM can and do cope very well in mainstream schools often with IEPs and additional support." Crap! Tell it to Kim, Ben's highly intelligent mother, who, after taking Ben out of the school that didn't give a shite about him, didn't understand him and just wanted to be rid of him and his 'problems', spent WEEKS visiting every other bloody school in the area, only to hear the same story over and again, that they didn't have the money, the staff, the help....etc..etc..but they would take him, as they had no other option but to do that, it was just that they really couldn't give her any hope that things would be any better at their school. She was left at her wits end, left all alone to 'get on with it'... It ain't me who's living in Cloud Cuckoo land, lady, believe you me! And I get so fucking angry with bloody know-it-alls who think that all children with autism are being so well cared for and understood, because THEY ARE NOT! They are often just left to get on with things, and those 'things' involve other children NOT on the autism circle who haven't a clue about the condition and don't give a damn, as they are struggling to keep their own heads above water in a factory farm of THOUSANDS of children in one place. I'm sorry, but I have personal knowledge of what goes on, and I'm afraid that exactly the opposite has happened, not just to me, but to my friends as well. If Ben hadn't had a wealthy grandpa, he'd probably be on drugs by now, drinking and running with the other 'wild boys' the Lost Children that Society turns its back on, whilst protesting how much they do. They do pretty much bugger all actually, and families are more often that not left to bloody well get on with it...whilst society clucks its tongue saying how terrible these children are... They don't have a bloody clue! And I am not swearing because I have any 'condition' (before the normal ones start up) but because I'm so bloody angry that so many people STILL have their eyes wide shut, particularly within the education system itself as to how many parents are struggling, let alone how many children are struggling even more. Mary, I'm so sorry about Hailey. I do fully appreciate that there are many children with autism who need 24/7 care, Rosie's daughter is the same, and like any child who needs constant attention, it is a huge stress for the parents. There is a part of me that wishes that a fortune was able to be poured into trying to find the key to unlock so many of these children....but sometimes, just as you saw in the film of Amanda Baggs, so much is going on inside, in their own language... I know that Helen Keller became locked away for a different reason, after possibly having menigitis as a very young child, I think...but Helen too was locked into a world that seemingly no-one could reach...yet someone did. Amanda Baggs proves that the minds of many severely autistic people function as intelligently, often far MORE intelligently than many 'ordinary' people. She is happy with her life and we should respect that. Her life may not be what *we* would want, because we have known a different one, but Amanda's life belongs to her, and she has made a damn good job of it! And of course, she's been able to do that with the help of others on the autism circle, who have given us computers and brought about an entirely new way to communicate. It is said that computers are doing for autistic people, what braille did for the blind, giving them a life, opening up the locked doors, not only to let them out, but to let us in! We have to let go of wanting all autistic children to be 'cured' because no matter how bad they may appear to us, they are alive, living within their bodies, with their own form of happiness, right alongside the sadness too. Watch this incredibly moving trailer about the true story of a Chinese family and their journey, not only to acceptance, but to loving the child they have been blessed with, despite the terrible, terrible days, months, years that they have had to endure. Children of the Stars - Youtube Children of the Stars - Website And I believe that inside every single autistic child there is a wonderful intelligence which can be brought out with computers, a whole lotta love and hard work...and faith in the child themselves. |
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24 Jan 10 - 03:18 PM (#2820492) Subject: RE: A Wish for Autism From: Lizzie Cornish 1 Wesley, this is for you, sweet man...and I hope, with all my heart that your son one day is able to communicate with you in the same way that Carly can now communicate with her parents, after years of being locked away without a voice. Carly's Story - 13 years old and opening autism to the world. |
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24 Jan 10 - 03:22 PM (#2820497) Subject: RE: A Wish for Autism From: Lizzie Cornish 1 Joe, just in case some people can't open that link, would you please let these words taken from it stay up here, as they're important. "TORONTO — A 13-year-old named Carly is challenging the conventional notions of autism, demonstrating emotional skills that lay hidden for years, until one day, a computer helped her reveal to the world what it's like to have her condition. From an early age, it was clear Carly had autism. As a young girl, she would often rock back and forth for minutes on end, flail her arms and hit herself repeatedly. Equally troubling, she never gained the ability to speak. Her father, Arthur Fleishmann, says many people who didn't know her assumed she was intellectually challenged. "Even professionals labelled her as moderately to severely cognitively impaired. In the old days you would way mentally retarded, which means low IQ and low promise and low potential," he says. Arthur and Carly's mother Tammy were advised to place her in an institution. Instead, they opted for a therapy called ABA -- Applied Behaviour Analysis, the kind of therapy now recommended for kids with autism but because of the expense and the need for specially trained therapists, isn't available to all children. While Carly made progress through the therapy, speech continued to elude her. "We tried hard to get her to talk but it wasn't in the cards for Carly," says her speech pathologist Barbara Nash-Fenton. Then, two years ago, Carly surprised everyone. Working with a computer equipped with pictures and symbols, she started typing and spelling words. At first it was just words -- help, hurt, head, teeth -- but soon she was assembling sentences. She typed slowly, using only one finger, and the words she wrote stunned all who knew her. "All of a sudden these words started to pour out of her," says Nash-Fenton. "And it was an exciting moment because we didn't realize she had all these words." "It was one of those moments in my career that I'll never forget." Writing reveals secrets of autism As Carly learned to write better, she began describing what it was like to have autism and why she does what she does, such as making odd noises and hitting herself. "It feels like my legs are on fire and a million ants are crawling up my arms," Carly has written about the urge to hit herself. "I want to be like Taryn," she has written of her twin sister, who does not have autism. With her single typing finger, Carly has been able to demonstrate her emotional intelligence and witty sense of humour to a family who says they were stunned by what she revealed. "We realized that inside was an articulate, intelligent, emotive person that we had never met. She was 10 at the time, and we just met her for the first time at 10 or 11 years old," says her father Arthur. "This was unbelievable because it opened up a whole new way of looking at her." Through her writings, Carly has joked about her "yucky" siblings, shown that she understands their jokes and revealed a curiosity about boys -- even asking when can she go on a date. "Inside, she is a perfectly normal 13-year-old girl. She has crushes, she likes music, she wants to be treated like every other 13-year-old," says her father. Carly also has expressed her frustration about her condition and about how the world misunderstands her. "It is hard to be autistic because no one understands me," she writes. "People look at me and assume I am dumb because I can't talk, or I act differently than them... I think people get scared with things that look or seem different than them. It feels hard. It feels like being in a room with the stereo on full blast." Autism specialist Dr. Wendy Roberts has read some of Carly's writing and watched her on video. She says Carly is certainly unique in her abilities and provides some fascinating insights into the condition of autism. "I think the initial reaction is that it is incredibly remarkable," she says. "It is amazing to think that somebody who has not been able to put her thoughts into words now has a mechanism to get some of her ideas across." Roberts says it's unclear whether Carly's unusual language abilities makes her a rare case or whether her new writing skills are the result of her intensive training. She says it's rare for someone with autism to have apraxia -- the inability to speak despite an understanding of language -- as well as such an obvious command of written words. Roberts says it may be that Carly possesses unique abilities that make her a rare case, or it may be that her early and intensive training simply drew the skills out. "What she does is quite uncommon but there hasn't been a really good look at kids with severe apraxia to see what could they be taught with intense teaching," says Roberts. "And that really begs the question of are we giving children enough intensive intervention to see if we are missing a fairly small percentage of kids who have this ability. There may be children being missed because they have not had access to therapy." "From a broader perspective it puts pressure on us to develop interventions that will allow written language to develop... so that we can develop more effective interventions." The benefits of ABA therapy Carly's parents say they are so grateful that their daughter was able to discover this way to communicate because it has made them rethink autism and made them realize that they made the right decision to provide Carly with intensive therapy. "If we had done what so many people told us to do years ago, we wouldn't have the child we have today. We would have written her off," says her father Arthur. "Then what would she be today?" "We never would have seen she could write these things. Can you imagine? We would have never have gotten out of her how articulate she is how intelligent she is," he says. "Now, she tells us stories, she teases her brother. She just does it in a different way, she does it with her computer." Carly's writing has progressed so far in the last two years, she's now starting to write a book. It's a take-off on herself and she's already come up with the title: "Elephant Princess." Her writing has also helped her therapists help her more effectively. "We've actually learned a lot about Carly," says her therapist Howard. "Since she has been able to type she has been telling us how it feels to be in her skin -- like ants are crawling up her arm. For us, this is very important. It helps with how we treat Carly, even how doctors treat Carly. "I think Carly has a lot to teach us." Carly has said she would like to tell the world about what it's like to have autism, so that others can understand what it's like. "Autism is hard because you want to act one way but you can't always do that," she has written. "It's sad that sometimes people don't know that sometimes I can't stop myself and they get mad at me. If I could tell people one thing about autism it would me that I don't want to be this way but I am. So don't be mad. Be understanding." |
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24 Jan 10 - 03:24 PM (#2820499) Subject: RE: A Wish for Autism From: Lizzie Cornish 1 And finally, Joe....would you kindly let these words stay as well? Again, they're from the link above, but they are Carly's own words, typed on her computer, by herself. "(THERAPIST ASKING CARLY ABOUT WHY SHE MAKES MOTIONS/NOISES (SELF-STIMULATION)) WHY DO YOU NEED TO "STIM"? Because if I don't it feels like my body is going to explode It like when you shake a can of coke and open it just a little All the coke finds its way out WHY IS IT DIFFICULT TO STOP? Its hard to explain. Howie (a therapist) told me all my stims and some of them is just because it help me to be calm Some of my stims I can't help and really don't want to do but once it starts I can't stop my self WHEN YOU ARE "UPSET", WHAT DO YOU DO OR NEED OTHERS TO DO TO CALM DOWN? A lot of times I get upset because people don't understand what I want Even though I spell they still don't always understand HAVE YOU EVER WRITTEN SOMETHING ON MSN AND SOMEONE READ IT THE WAY THEY WANTED TO READ IT NOT THE WAY YOU WROTE IT? That happens to me all the time I think the best way to calm me down is to leave me alone Or rethink what I am saying DOES MUSIC OR DEEP PRESSURE HELP? I like listening to music it does make me feel good and I like to be squeezed but not usually when I am upset HOW WOULD YOU DESCRIBE YOURSELF? I am a autistic girl who has learned how to spell and can tell people to stop looking at me like I am helpless I am cute funny and like to have fun WHAT SORTS OF THINGS DO YOU LIKE TO DO FOR FUN? I like to go on msn and I like to beat my brother at connect four its so funny because he tries so hard you should see his face when I win I also like to listen to my dad read me stories I love to swim it help me control my body -------------------------------------------------------------------------------- A recent conversation between Carly and two of her autism therapists: I do want to go to school but I cant Its not that I cant do the same work as allthe other kids I went to school last year and even did well on test But I could not stay in class because of all my behaviors I was hard for me to sit in the class without bang or screeming or standing I tride so hard to control it But it is to hard to do when I need to spell and do other things at the same time My dad said that is why we see the doctor in the hospital she is trying lots of medication to see if she can help me You say you to want to help me But how can you when you dont know what its like to be me You dont what it feels like when you cant sit still because your legs feel like they are on fire Or it feels like a hundred ants are crawling up your arms How can you help me when you don't know Dad and mom say that every one takes test to help let people no what level they are at But I have taken lots of test and I no what I can and can no do You want me to be in aroom with three kids and concentrate on playing a game I probably cant do in the first place and at the same time try do control behaviors You don't have to be smart to no what is going to happen I wont be able to play the game I will scare the other kids and I will feel bad in side and you will make me feel this way for a test How does that help me Don't tell me it shows you what level I am at because you no that is going to happen I am not really living in my house because of my behaviors I try so hard to stop them but it is to hard I cant walk by food without having a fight with my self You want me to spell but it take a lot of concentration just to hit one letter on the keyboard Donna said she cant help me if I don't do what she asks But since when did I need your help I taught my self how to listen and how to control some of my behaviors and even spell all by my self I dont need your help If its only going to make things worse How many kids have youever worked with that dont talk but can spell like me I can do a lot of things that you dont even no about but a test wont get me to show them to you It is so hard to be me And you would not even under stand I wish I could put you in my body just for one day so you can feel what its like ... Allmy friends are double my age because its hard for me play with kids with out scaring them I was asked why I like msn so much its because I can talk to people with out them seeing me hit the table or screaming I want to clear something up just because I am hitting the table or screaming does not mean I am not reading or listening I wish I could go to school on msn I could do the work but no one would have to be distracted by my behaviors And I could pay attention more to my work ... My mom asked me a question that no one ever asks me What do I want I want not to feel whats happening in my body I want to stay at home and not go to the farm I want to be like every other kid But I cant Because I am carly I cant sit for long times or even walk past an object with out having figths in my head I no I cant take that but my mind is fighting with me I want to be able to go to a school with normal kids but not have to worry about them getting up set or scarred if I cant help myself and hit a table or scream I want to be able to read a book by myself without having to tell my self to sit still and not close the book and follow each word and concentrate I want to sit at a table with my mom and dad and worry about my body might do that I might not be able to control I want to be able to talk to people and have them understand me the first time not respell over and over again Its to hard ... I see lots of doctors but they all say the same thing they cant help me Or they say she should take this medication but it never works What I want is medication that is going to help me not the doctor I want something that will help me sit I want something that will put out the fire I want something to make my feel mouth less silly -------------------------------------------------------------------------------- An email conversation between Carly and Globe and Mail reporter Carly Weeks CAN YOU TELL ME WHAT SOME OF YOUR FAVORITE MEMORIES ARE FROM GROWING UP? One things I enjoyed the most is listening to my dad read me stories in bed Some other memories I had was crawling in to my sisters bed at night after I woke up and she let me sleep with her she cuddled with me till I fell a sleep I am so lucky to have her WHAT IS ONE OF THE HARDEST THINGS YOU'VE EVER HAD TO DO? I think I would have to say controlling my behaviors It might not seem like I am at times but I try very hard to act appropriately It is so tough to do and people think it is easy because they don't know what is going on in my body They only know how easy it is for them Even doctors have told me that I am being silly but they don't get it If I could stop it I would But it is not like turning a switch off it does not work that way I know what is right and wrong but its like I have a fight with my brain over it WHAT DO YOU THINK OTHER KIDS WITH AUTISM COULD LEARN BY HEARING ABOUT YOUR STORY AND THE PROGRESS YOU HAVE MADE? To tell you the truth I don't know I am a girl with autism that learned how to spell and is now able to tell people what I think Its not like I built a thousand houses in new Orleans or found a way for people who don't have food get food I think the only thing I can say is don't give up your inner voice will find its way out Mine did WHAT ELSE CAN YOU TELL READERS ABOUT YOU? I recently learned that dreams can come true and that if a child like me or their parents dream is for them to communicate one day That anything is possible if you believe." Thank you, Joe. xx |
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24 Jan 10 - 03:40 PM (#2820514) Subject: RE: A Wish for Autism From: Mrs.Duck As I said ,Lizzie you clearly have even less knowledge than I thought. All you can do is shout and swear - thank goodness I don't have to have anything to do with you. Get on with it you clearly couldn't understand anything rational or true so carry on living in your own weird twisted world and let the rest of us live in the real one where thankfully the rubbish you spout does not happen all the time! Don't bother replying I shan't be reading it. |
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24 Jan 10 - 04:06 PM (#2820539) Subject: RE: A Wish for Autism From: Folkiedave Save yourself a bit of server space Joe, the words are here. |
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24 Jan 10 - 04:18 PM (#2820552) Subject: RE: A Wish for Autism From: Rasener All I can say is that my autistic daughter wants to be in a "normal school". She wants to be like anybody else. She knows she is different, but realises that people do not understand her or want her to be friends. We are paying privately, even though we can't afford it, for our daughter to gain skills that may well help her socially. She now has private lesson for Playing guitar Taking swimming lessons Taking singing lessons. Fortunately they are with people who want to help her. We have managed to get her involved in Dance and Theatre classes. Through her one to one support, we have managed to set up additional subjects that cover learning social skills and life skills. With all this intervention, we have seen her self esteem grow slowly and are hoping that in a couple of years time, her skills wil give her a chance in this world. However at this moment she has no friends and never gets invited to parties or events, becuase of her Autism. |
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24 Jan 10 - 04:20 PM (#2820553) Subject: RE: A Wish for Autism From: Lizzie Cornish 1 Dave, I put those words there in case some people are unable to open links. Those words are damned important, and I wanted as many people to read them as possible. Please, just for once, would you and Joan (Ruth), put aside your spiteful, personal and vindictive campaign, because Carly's words could just possibly open up many things for many people, concerning *their* children...and THAT is what this thread is about...helping others. So if you have no wish to help, but only to hinder, kindly bugger off out of it and take your gang with you. Thank you. Joe, I'd be very grateful if you could leave Carly's words where they are. Thank you very much. |
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24 Jan 10 - 04:38 PM (#2820571) Subject: RE: A Wish for Autism From: Ruth Archer You still haven't told us when your family received their various autism diagnoses, nor your diagnosis of dyslexia. Not spiteful nor vindictive - a simple question. |
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24 Jan 10 - 04:43 PM (#2820578) Subject: RE: A Wish for Autism From: olddude With no disrespect to anyone, I understand where Lizzie is coming from she has a good heart and means no harm to anyone and I have heard this many time from people only wishing the best for kids ...However, I can't speak for the schools in other countries. In America there have been study and study done to the tune of millions of dollars. Autistic children do far better mainstreamed then those who are not. That is a fact. In addition follow up studies show no hindrance to other children or their education. Each child is assigned a personal aid that "hopefully" is well trained in autism (not true in all parts of the country where rules vary). I have watched numerous kids do so much better when attending schools with other children who do not have the illness. It works here, the local school boards (I was a former member) tend to complain of the expense. I told them how much is a child worth to you ... It is always positive to have the children mainstreamed according to all the research. Check the web if you wish or talk to Unlocking Autism, Dan Marino foundation, Doug Flutie foundation or any of the big ones Thank you |
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24 Jan 10 - 04:55 PM (#2820585) Subject: RE: A Wish for Autism From: Rasener I just posted on the thread called How do you think. I think it is relevant to this thread. I used to go to all the appointments with my daughter and that was with specilaist that understood Autism. As I was teaching at the time, I made notes on the things that excited and interested my daughter. I noted some wonderful teaching techniques fron some very skilled people. Eventually I designed my own course for my daugher based on my obsevations. I then employed a student who was trying to get her degree in psychology. I gave her my lesson plan and she stuck to it rigidly. She was amazing and the specialists were amazed at how her skills developed. I never let them know what was happening. This was at the age of 4 to 5 for my daugher. I remember how excited she was at having these day lessons. Another thing I did was to take many photo's of things we did and use those photo's to help her undertand through pictures what we were going to do. So if we were going to the speech therapist, I showed her a photo of the car and then a photo of the speech therapist 5 minutes before we went out. She understood. I also spent a lot of time helping her to use the computer at that age, even though some of the specialist were horrified at that. I have never regretted that, as the computer was a brilliant way of helping her to communicate. Obviously over time things were changed to adapt to her latest situations. She now goes to main stream with one to one support. Early intervention and a willingness by parents to understand and do all they can to help them develope over time are critical. In order to do that, one of us had to stop working and work solely on that side. As my wife wanted to carry on with her self employment as a freelance translator, we decided that I would stop working and do everyting in my power to help our daughter. we sacrificed a lot and are basically broke because of that, but we wouldn't want to change that. My daughter wouldn't dream of wanting to go to a special needs school. She wants to be included. OK theer are times when I wished she was at a special needs school, but at the end of the day, manin stream is better. |
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24 Jan 10 - 04:56 PM (#2820587) Subject: RE: A Wish for Autism From: Rasener >>OK theer are times when I wished she was at a special needs school, but at the end of the day, manin stream is better.<< OK there are times when I wished she was at a special needs school, but at the end of the day, main stream is better for her. |
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24 Jan 10 - 05:08 PM (#2820596) Subject: RE: A Wish for Autism From: Lizzie Cornish 1 Each child is different. Each school is different. Each area is different. The school that has autistic and severely dyslexic students saved Ben's life. It gave him *back* his life. He is now about to take his GCSEs and is looking forward to staying on to hopefully do A levels, depending on his results. He loves it there, is treated with respect and has learnt a great deal, not just about life, but about himself too. Had he stayed in his mainstream state school, I have no doubt, and neither does his mother, that he would have ended his life, such was the misery and bullying. As with all schools, it is the luck of the draw who you attend school with. You can either sail through it, surrounded by good people, or have the utter misfortune to be surrounded by unfeeling people who thrive on your problems, and who go out of their way to make your life hell. There are great state schools. There are absolutely shitty ones. There are great teachers. There are absolutely shitty ones. And could someone please explain this to me... IF autistic children have such a great time in mainstream schools, then WHY has The National Autistic Society themselves *chosen* to highlight the misery that so many of them suffer, due to lack of knowledge, empathy, sympathy and understanding in their 'Think Differently About Autism' campaign? Don't listen to me, listen to the children themselves, on that video I posted above. They are the ones who are telling you what happened to them...and it makes my heart break... |
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24 Jan 10 - 05:30 PM (#2820622) Subject: RE: A Wish for Autism From: Lizzie Cornish 1 And here is the video I am talking about above, as it's got 'lost' higher up in this thread... The National Autistic Society's 'Think Differently About Autism' video |
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24 Jan 10 - 05:35 PM (#2820628) Subject: RE: A Wish for Autism From: Lizzie Cornish 1 And there is one more thing I wanted to say. I have NO problem with autistic children going to mainstream schools so long as the children their are understanding, kind and compassionate and so long as the autistic children themselves are very happy to be there.. I do not think that there are anywhere near enough children who understand and accept autism though, nor their parents or teachers, and my great fear is that the very children who need to feel so accepted end up feeling the exact opposite as they are either so often bullied or left very much on their own.. Kindness and Understanding should abound. |
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24 Jan 10 - 06:04 PM (#2820652) Subject: RE: A Wish for Autism From: olddude Lizzie over here, they start right at kindergarden, the kids are all in the same classroom, the kids get to know and understand autism. Each case is different but it does amaze me to see how the other kids act around most of the kids and it is truly with compassion since they all started out so early most of the time ... now exceptions to every rule and there is no utopia for sure ... likewise there are problems but more problems would occur overall without main-streaming most think. Each case is different and no two kids are the same but overall it is the best approach. Over here most parents take issue with teacher training, there just is not enough training to understand things like what happened last week when the teacher decided to rearrange the room and sit the kids differently ... it caused a great deal of panic to my niece since that is not where she normally sits ... things like that. each kid is different |
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24 Jan 10 - 06:22 PM (#2820686) Subject: RE: A Wish for Autism From: Lizzie Cornish 1 I wish it were like that over, Dan. Hopefully, things are changing all the time. Things HAVE to change, because the increase in autism is not going to go away. The earlier that all children learn to accept one another, the better, but we need to give far more time to children learning compassion, kindness, tolerance and empathy than we do to so many other things they are forced to learn, which actually serve no real purpose in their future lives, and which they so often have no interest in. We have everything so upside down and inside out...and yet the solutions are all so simple. We simply have to let go of all that has gone before and think differently, about so many things. Amanda Baggs - Interview on living in a world made for others. |
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24 Jan 10 - 06:35 PM (#2820703) Subject: RE: A Wish for Autism From: Lizzie Cornish 1 And taken from a link within that article above, where Amanda is interviewed by a doctor, Dr. Sanjay Gupta, who has 'met' her online, and who then meets her in person... >>>....It really started me wondering about autism. Amanda is obviously a smart woman who is fully aware of her diagnosis of low-functioning autism, and quite frankly mocks it. She told me that because she doesn't communicate with conventional spoken word, she is written off, discarded and thought of as mentally retarded. Nothing could be further from the truth. As I sat with her in her apartment, I couldn't help but wonder how many more people like Amanda are out there, hidden, but reachable, if we just tried harder. I am a neurosurgeon and Amanda Baggs opened my eyes about the world of autism. I am eager to hear what you think of her story and if you have stories of your own.<<<< THEN...it gets REALLY interesting! This is the first comment left on Dr. Sanjay's page... "It was interesting to hear Amanda discuss why eye contact makes her feel threatened. One of the main focuses of therapy for children with autism is making eye contact. Perhaps forcing autistic children to make eye contact is doing more harm than good. There is nothing like hearing what it is like to be autistic than hearing the words from a person who has autism." Think Differently......... |
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24 Jan 10 - 07:53 PM (#2820791) Subject: RE: A Wish for Autism From: Folkiedave Please, just for once, would you and Joan (Ruth), put aside your spiteful, personal and vindictive campaign......and THAT is what this thread is about...helping others. I just love the arrogance with which you - having done some searching on the internet assume the role of guide and mentor to people who have lived with autistic people all their life. It isn't about helping others Lizzie - they know fine all this stuff. Certainly they could find it (and more) as easily as you can. They probably spend a lot of time searching for it. Do you ever go past the first internet link you come to? Did you get to the second quote on that thread? THEN...it gets REALLY interesting! This is the first comment left on Dr. Sanjay's page... And this is the second quote left on that page: "This type of video does nothing for those who have not experienced much time with different children and adults with Autism spectrum disorders. It creates a false conception that all autistic children and adults are capable forming the complex sentences and thoughts that Amanda does in the video. It also gives people the impression that all people with Autism are merely trapped, but you can solve their communication defecits by slapping a keyboard in their hands. This creates false hopes and unrealistic expectations for parents and loved ones". Now tell us all Lizzie - why didn't you post that bit? Perhaps because it didn't agree with what you said? |
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24 Jan 10 - 08:37 PM (#2820815) Subject: RE: A Wish for Autism From: Lizzie Cornish 1 Cripes, I should be in bed now... Dave, I posted the words I did because they were relevant to me. Rose told me many times how Daisy would never look at her, despite so many people trying to get her to do just that. Chris, my manageress, whose 14 year old daughter, Chloe, has just been diagnosed with Aspergers, does the same thing and her Mum keeps on telling her off for looking away...as she's not yet realised why Chloe does this... Hannah, my daughter's friend, who still can't look at us hardly at all, and who, when younger, would keep her eyes cast down, and always wear a peaked hat, with the peak pulled down so low over her face..... So many people consider this as a sign of rudeness, when to the autistic child/adult it is nothing of the sort....and the more people who realise this, the better, because it will make many lives a fraction easier. I do not believe that it is only a few people on this thread who read it, Dave. I post, as I have always posted, for the many people who read Mudcat who never post..and for those who may just happen to stumble across Mudcat, as it comes up so often now in searches...and who knows who may read this, see some links and be helped in ways they never knew they'd find. That is the wonder of the internet. I'm sorry if it spoils your feelings above, but tough. |
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25 Jan 10 - 09:18 AM (#2820971) Subject: RE: A Wish for Autism From: Dave the Gnome I'm puzzled, yet again. Did this not start of as a wish for people with autism to be accepted? "My wish for 2010 is that people will understand autism is not a disease; people with autism are not looking for a cure but for ACCEPTANCE Yet we are now being told that to send autistic children to mainstream schools will cause no end of harm to them, depending on the school. Surely the way to ensure acceptance is to treat them as normaly as possible. Or are we saying that schools who specialise in different types or learning should be the norm? In which case the pupils with different needs could find themselves having the advantage of specialist treatment while the majority are left to their own devices. Tough one to figure out. No wonder they spend millions trying to resolve the issues. Sounds like a case for SuperMum with her magic raygun full of coloured stars and happy thoughts once more. I wonder why we pay taxes when everything can be solved so easily... :D (eG) |
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25 Jan 10 - 10:10 AM (#2821007) Subject: RE: A Wish for Autism From: SINSULL Given the living hell that "Carly" is forced to live in, explain to me again how autism is such a magnificent gift? |
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25 Jan 10 - 10:31 AM (#2821033) Subject: RE: A Wish for Autism From: Lizzie Cornish 1 Does Carly see it as hell, Mary? I've said, throughout this thread, that autism affects everyone in different ways, from the mild to the tragic. However, you surely cannot deny that many on the circle are gifted, Mary. Aspergers has many famous names within its circle. Dave, please, enough. I've told you that Ben's life was saved by a wonderful school which specialises in chldren on the autism and severe dyslexia circle. What's the problem with that? The children are truly well looked after, by people who have time for them, who totally understand many of the problems and difficulties involved. I have never advocated that children, or adults, who are autistic be 'locked up' or segregated from society. Show me where I have said such a thing. I have said that many children DO suffer, and they are suffering terribly, as Ben did, as the young people on the video link I put in, from The National Autistic Society, did. Watch it, then shout and scream to the NAS about it, not just me, because if you don't believe me, then it figures that you don't believe them either, or the autistic children themselves who suffered hugely at the hands of so called 'normal' children. It's THERE, Dave. In the video. Go look for yourself and then come back and tell me what you think. In an ideal world, all children would be kind to each other, no matter what the problems some have to endure, but in reality, in this country, in this present day, that is VERY far from what is happening, and if you think otherwise, then I can assure you, you are very wrong. My wish IS for autistic children to be accepted and understood, AND, befriended too. Ben may go to a special school during the day, but he still plays rugby, football etc..and has made friends at his school too. He is also friends with my son, and we go out of our way to try to help Kim wherever possible. Josh sees Ben as his friend, not 'his friend with autism' but simply....his friend, and...his best friend too. Don't keep being nasty all the time, please. I'm surrounded by those on the autism circle, so I do know what I'm talking about, and I've seen many sides of it. Not all sides, but many different ones, so I can appreciate how heartbreaking, all consuming and tearing apart it is, because I've watched my dearest friend tear herself apart over it...and I have it in my family. |
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25 Jan 10 - 10:36 AM (#2821041) Subject: RE: A Wish for Autism From: Dave the Gnome Did you know that there are only two sides to a circle? :D |
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25 Jan 10 - 10:45 AM (#2821047) Subject: RE: A Wish for Autism From: olddude Lizzie is not out of line in any manner, each case each child is different, it is always best to mainstream a child ... However there are many children where the risks to others or themselves are so great that they have no choice but to attend specialized schools. Most are very fine schools here in this country and most are incredibly expensive even with the local district picking up most of the cost since education is the responsibility of the local school board. Many of our deaf children go to the st. mary's school for the deaf, nothing wrong, many come back to mainstream after getting the needed skills ... No issue, I did not read where anyone suggested locking up kids ... Each case is different. Mainstream is always best but 1 size doesn't fit every case. Far as the gene, I tend to think that gifted children would still be gifted maybe more so ... I would do anything to get rid of this curse and if they could eliminate it ... I would drop to my knees in thanks. that is just me however |
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25 Jan 10 - 10:48 AM (#2821051) Subject: RE: A Wish for Autism From: SINSULL Yes, she does: "It feels like my legs are on fire and a million ants are crawling up my arms," Carly has written about the urge to hit herself. |
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25 Jan 10 - 10:56 AM (#2821057) Subject: RE: A Wish for Autism From: Lizzie Cornish 1 And I'll tell you something else, Dave. When I was around 19, I worked in a chemist shop in Eastcote. One of our customers there was a young woman with cerebral palsy. She was very badly affected, muscle spasms throughout her face and body. She was a terrific fighter though! She'd limp in to the shop every single Saturday morning to come and talk to me, as we'd got talking one day and kind of connected. I always made time to go and have a natter with her. She shouted, I guess her vocal muscles were also affected, and it took her a long time to get her words out...but hell, I used to have a terrible stutter as a young child, so I was there with her, and waited patiently for her to speak. One day, she brought a young man in with her...John. She proudly introduced him to me and I shook his hand. She told me how much they loved one another...and John smiled. He was blind. He didn't see the outside of her, but the inside..and he *loved* what he saw in her soul...They were so happy. Then, after they'd gone, Richard, the owner of the chemist walked up to me. "Scotch.." he said (a nickname he used for me)..."I don't want her in here anymore. She puts the customers off! Next time she comes in, I'll serve her." I was shocked...I just stared at him, couldn't believe how bloody heartless he was. He was a doctor's son, as well, but money meant all to him.... Next time she came in, I was serving someone else, and he rushed over to her. He served her so abruptly, so rudely...and she knew straight away! She never came back. I never forgave him for that...and shortly after that I left. I've never forgotten that. Never forgotten how she must have felt. She came in because, in her words "You treat me like I'm normal'...She was normal, it was Richard who was the one who was not. He hurt her, and he hurt her deeply. He was an absolute bastard.... So would I want highly sensitive people being surrounded by characters like him, who so often do life-long damage to the gentlest of souls? No. The only way mainstream school would work is if EVERY autistic child has a one to one fully trained and sympathetic teacher/carer who is there for them at all times, throughout the school day, not only to help calm their fears, but to keep them safe from some of the cruel little kids who don't give a damn what they say or do to anyone they deem 'different'. Surely, that is right? Ben was left all alone, to cope all alone...His teachers didn't want to know, they just moaned to his Mum about his behaviour, whilst completely overlooking the behaviour of the other children. Hannah, mainstream school, right? SIDMOUTH COLLEGE, Dave....fucking Sidmouth College...!!!! Punched in the face, treated like a *dog* by the other girls..."Get this, Hannah!" "Get that, Hannah!" "Do this, Hannah!" "Do that, Hannah!" and that poor child did all they asked, because she was so terrified. She never told her parents, and it was my daughter who told me.... *I* told her parents....and I also told them how those girls said to Hannah, just before her piano exam, that they hoped she'd fail, because her piano playing stank and she was useless and weird. Every morning before she had to go to school, Hannah played her beloved piano for an hour or more, almost drawing strength from it, for her day ahead in 'jolly mainstream fucking school!'.....She was and still is THE MOST GIFTED PIANIST I have ever heard! She makes the tears flow...and she is lost, utterly, totally lost in her music, going to another place, just as my daughter does when she paints......finally in a land they love, where they feel safe.....and where they are at home, where they understand their world.... Shortly after she was hit in the face, her parents finally woke up, came and talked to me and I told them to get her out and to get her out fast. They took her out the next day. She never went back. They moved away from Sidmouth, despite adoring the place, as their daughter was terrified, at age 15, to go out of the front door. They moved to Dartmoor. So don't tell me that mainstream school is a great place for all autistic children, because it ain't! Many of them are in grave danger there, and they cannot explain that to their parents, because emotions come hard to them, they have trouble getting those feelings out, so they simply 'endure'... Sorry, but Ben's life, after he changed schools was supremely better in every single way...because he was CARED for and that state system does not DO caring of it's children in the way it should, because it's too damn busy getting too few teachers to tick too many tick boxes. It is result driven, not soul driven. |
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25 Jan 10 - 11:01 AM (#2821064) Subject: RE: A Wish for Autism From: Dave the Gnome There are still only two sides to a circle - The inside and outside. Those in it can never get out. Those outside can never get in. Sounds pretty exclusive to me. How does calling it a circle as opposed to the more generaly accepted spectrum help? :D (eG) |
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25 Jan 10 - 11:08 AM (#2821070) Subject: RE: A Wish for Autism From: Lizzie Cornish 1 >>>Yes, she does: "It feels like my legs are on fire and a million ants are crawling up my arms," Carly has written about the urge to hit herself.<<<< She also writes how she loves playing with her brother and how lucky she is to have her sister who she loves so much. I wonder what Carly would tell you, if you offered her the choice of life, or death, Mary. I feel she would choose life. What makes her legs and arms feel better is moving around, and yes, hitting herself at times....and for that, so often, autistic children are told off, as are hyperactive children, ADHD children, dyslexic and dysprxic children...They are all on the same circle, at different points, sharing many traits, many symptomes...schizophrenics too... The circle is wide and encompasses many. Ben has realised that with medication, even though he dislikes taking it, his life is far more easy to live. His thoughts slow down, he is able to think straight....he doesn't need to move so much..I guess the drugs help with the pain and weird feelings...He told his Mum that sometimes, when he starts grunting and making strange noises (strange to us that is) he's merely 'letting off steam' because he, like Carly, feels a bit overwhelmed at all that's going on inside..and this helps release things..makes him feel better. He doesn't even know he does it...We don't care a bit, why should we...likewise, if he wants to wriggle, let him wriggle. School controls in so often the wrong way... "Sit STILL!" "LOOK at me when I'm talking to you!" Time to let go... Thank you, Dan. I fully appreciate what you say..and yes, if we could remove the bad things for those we love who are affected, but keep the good, how wonderful that would be...Perhaps one day, as the children themselves teach us so much more about the 'inside of autism' perhaps we shall do just that..I certainly hope so too, with all my heart.. Here is the BBC Radio 4 series of programmes about autism from a while back now. They are still available. BBC Radio 4 - 'You and Yours' - The Autism Series |
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25 Jan 10 - 11:29 AM (#2821086) Subject: RE: A Wish for Autism From: SINSULL I am not suggesting that Carly has no reason to live. I am suggesting that her autism is a vicious nightmare which needs to be eliminated from future generations. Her autism is not a gift. |
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25 Jan 10 - 11:45 AM (#2821103) Subject: RE: A Wish for Autism From: Wesley S "Children with autism should not be in mainstream schools." "I have NO problem with autistic children going to mainstream schools." Two VERY different statements from you in the same thread. Please explain your view Lizzie in a post slightly shorter than "Moby Dick" - because the sheer volume and quantity of your posts doesn't make you right. And I keep reading stories from you about violent autistic kids. That has not been my experience at all from any of the autistic kids my son had been in school or daycare with. So I've very doubtful of these experiences of yours. Unless it's a British thing. That stuff just isn't happening in the USA. In my experience. Early on it daycare there were some biting episodes but they were no more common than with the normal kids of the same age. And I know that my son has pushed some kids away when they got in his face but that was only a handful of times when he was much younger. Now he simply walks away. He's never struck anyone. Maybe he has something to teach me about trying to reason with you. I'd be much smarter if I just walked away. But I'd hate for any of these silent Mudcat readers you mention to think that your opinion is the only one out there. |
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25 Jan 10 - 12:08 PM (#2821120) Subject: RE: A Wish for Autism From: Lizzie Cornish 1 Well, Wesley, if you can provide a mainstream school where they are safe, understood and taken care of the whole time they're there, then I have NO problem with that at all. Sadly, that ain't happening in so many places. Please tell me this though, why don't you comment on the National Autistic Society's own video, where they highlight these very problems I'm telling you DO happen? I can't figure that one out at all. The society has far more experience than many of us on this thread, because they hear so many stories...and the bullying by other children in mainstream schools is what they have chosen to highlight. Why do you think they've done that? Why do you think the young people who had it happen to them have chosen to speak out? WHY don't you comment on that? Most of the violence is against autistic children, not the other way round. However, I have known personal experiences where the autistic child or young person themselves have lashed out, often in response to some horrible remark, or relentless bullying, and I've written of that above. I have also stated, over and over, that all the autistic people I know are the kindest, gentlest people...but they all share The Fear...and I still feel that to put many of those children into a situation where that fear grows even bigger, can be the wrong thing to do. As Dan states above, if it works, it works well...but one size does not suit all. If your child is happy in mainstream school, excellent, there is nothing to worry about. But if they are not....and I have given you examples, as does the National Autistic Society video I posted, then you need to think of another way forward. Kimmy had no option, the choice was made for her by her son, basically. He either ended his life, or she reached out to help him in a way she never thought she'd have to. Luckily, she chose the latter. I'm not sure why you choose to ignore the things I'm saying, preferring to twist them around and put them in a bad light, but that is your freedom to do so, I guess. And also, I would not be rude about the way you write, so please, could you refrain from insulting the way I do. Thanks. |
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25 Jan 10 - 12:13 PM (#2821123) Subject: RE: A Wish for Autism From: SINSULL In other words, Wesley, pleaswe don't point out contradictions, misinformation, skewed information, etc or you'll get an FU> (see above). That apparently is notrude or insulting. I should know better than to try to have a reasonable discussion with LC. Bye. |
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25 Jan 10 - 12:18 PM (#2821125) Subject: RE: A Wish for Autism From: Lizzie Cornish 1 "And I keep reading stories from you about violent autistic kids." No, you don't, actually. I have mentioned two incidences where that happened, and stated how fear can turn to anger very fast in a fearful situation. I have stated far more often that the so called 'normal' kids are the ones who are violent and bullying, which to me, is far from 'normal' as my children are quiet and sensitive. |
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25 Jan 10 - 12:23 PM (#2821129) Subject: RE: A Wish for Autism From: Lizzie Cornish 1 "I should know better than to try to have a reasonable discussion with LC." Sorry, Mary, but where exactly have I been unreasonable to you? |
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25 Jan 10 - 12:36 PM (#2821142) Subject: RE: A Wish for Autism From: Wesley S Lizzie - I have seen the video. And as I see it the problem is not autism at all - it's bullies. If you remove autistic children from that environment the bullies are just going to move on to some other target. My guess is that they are "sharing the wealth" anyway. Monitor the bullies and change their behavior. Problem solved. And if they refuse to behave cart THEM off to a seperate school.NOT the autistic kids. Makes more sense to me. Leaving autistic kids in mainstream school educates two groups. Normal kids get to experience autistics and the other way around. You don't have a problem with that do you? |
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25 Jan 10 - 12:48 PM (#2821153) Subject: RE: A Wish for Autism From: olddude well I typed out a long post only to see it disappear again so I won't type out another. What I said in the post was ... Schools right now take bullying very serious. Children doing such face serious discipline measure. bullying outside of school can be reported to the school in this country. There is a zero tolerance. Also there is far less bullying anymore ... every school I know has at least 2 or 3 autistic kids in the class and it is getting worse. I can only speak for the small town school I know and it maybe different in large cities where funding is such a problem but the state education laws are pretty clear on a zero tolerance for bullies ... biggest issue to me is the lack of compassion on the adult side. Most kids learn to accept difference pretty quickly ... Adults still look at a child acting up and say I would tan their backside ... awareness is so important I think. |
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25 Jan 10 - 03:38 PM (#2821293) Subject: RE: A Wish for Autism From: Bonzo3legs every school I know has at least 2 or 3 autistic kids in the class and it is getting worse. It shouldn't make any difference now we have differentiation, individual learning plans etc. |
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25 Jan 10 - 03:44 PM (#2821300) Subject: RE: A Wish for Autism From: Wesley S 100 I couldn't resist. It's my OCD acting out. |
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25 Jan 10 - 03:47 PM (#2821303) Subject: RE: A Wish for Autism From: olddude yes you are right bozolegs. I meant for other kids interaction thats all |
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25 Jan 10 - 05:53 PM (#2821413) Subject: RE: A Wish for Autism From: Lizzie Cornish 1 Wesley, I KNOW it's the bullies. I've never said it was the autistic children. That's the whole point. :0) x I am on their side, not the bullies. I am on your side. But 'Houston, we have a problem' over here in the UK in so many of our schools, and I'd imagine that is why The National Autistic Society is highlighting this very problem. |
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25 Jan 10 - 07:28 PM (#2821485) Subject: RE: A Wish for Autism From: Lizzie Cornish 1 Tito Mukhopadhyay - Poet Soma, Tito's mother being interviewed on 'Autism Podcast' about her Rapid Prompting Method Soma's site HALO 'Helping Autism through Learning and Outreach' The HALO Effect - series of videos |
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25 Jan 10 - 09:17 PM (#2821542) Subject: RE: A Wish for Autism From: Wesley S So if bullies are the problem why make the other kids pay for it? |
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26 Jan 10 - 11:13 AM (#2821722) Subject: RE: A Wish for Autism From: Emma B It was the boastful nursery book character in Lewis Carroll's looking glass world, where everything is backwards about, that said "When I use a word it means just what I choose it to mean - neither more nor less" So let's look at the meaning of some words in Lizzieworld Actually the term 'Autistic circle' was published in a letter to the Journal of Autism and Developmental Disorders back in 1982. However, it very explicitly refers to observations of a group of very young children presenting 'typically autistic' behaviour who would only take those objects of interest/stimulation within a specific circumference or circle. The Magic Circle is a well known organization of professional magicians that can be found on the internet and elsewhere while, for the terminally bored, you can also find magic circles on Facebook instructions a href="http://video.aol.co.uk/video-detail/facebook-trick-tutorial-magic-circles/3478202407">here Of course Lizzie is free, like the scornful and inevitably cracked, Dumpty, to call anything whatever she wants however nonsensical or misleading her choice of alternative resulting in ineffective communication and understanding. So why is the term 'autism SPECTRUM' the one used by the W.H.O. the National Autistic society and all professionals in the field of medicine, research, education etc in the English speaking world? The term implies, by definition, a 'broad sequence or range' that is to say, there is not a unitary disorder but rather a SYNDROME that can range from relatively severe to relatively mild and non clinical psychological conditions characterized by widespread abnormalities of social interactions and communication, as well as severely restricted interests and highly repetitive behaviour. Since the late 1970s it has been recognized that autism exists on a continuum affecting people in many different ways and to varying degrees. Although Asperger syndrome is included as part of the 'autism spectrum'. the main difference between the two is thought to be in language development: people with Asperger syndrome, typically, will not have had delayed language development when younger. They do not usually have the accompanying learning disabilities associated with autism, although they MAY have specific learning difficulties which may (or may not!) include dyslexia and dysphasia People with Asperger syndrome can be of above average intelligence but nevertheless have difficulty sustaining friendships and social relationships and to quote the National autistic society ……. can be imaginative in the conventional use of the word, for example many are accomplished writers, artists and musicians, but can have difficulty with social imagination. Like Mrs Duck I don't really want to get involved in any of Lizzie's confused campaigns but, like Wesley, I'd hate for anyone who stumbles across Lizzie's opinions to have them mistaken for factual and useful information. I do believe in 'kindness and understanding' Lizzie but I don't believe it is a 'kindness' in any sense to describe autism or dyslexia as a 'gift' having found the latter a burden for that period of my life before keyboards and spell checkers. As for 'understanding' I can only echo Mrs Duck that a little knowledge is a potentially dangerous thing in the wrong hands. |
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26 Jan 10 - 11:58 AM (#2821758) Subject: RE: A Wish for Autism From: Emma B Let's also consider syllogisms - a logical argument in which one proposition (the conclusion) is inferred from two others The classic example is - If, ….All animals are mortal and… All humans are animals. we may safely conclude that…. All humans are mortal. However it is a misconception and fallacy resulting from incorrect reasoning in argumentation to conclude (either willfully or in ignorance) that because - ……depression is a serious illness which can affect anybody and some people with an autistic spectrum disorder (just like any other person) may have a biological predisposition to depression and may become depressed because of the constant struggle to deal with the world around them. …….Some well known comedians have been known to suffer from spells of depression …….Well known comedians like Tony Hancock, Rowan Atkinson, Stephen Fry, Billy Connolly (who have suffered from depression) are therefore 'on The Circle' of autism I'm sure that Stephen Fry, who has actually been involved in some interesting learning aides for autistic children cartoons to aid autistic children would be fascinated by your deductive 'reasoning' processes and diagnosis Lizzie. |
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26 Jan 10 - 04:35 PM (#2821990) Subject: RE: A Wish for Autism From: robomatic Autism covers a big spectrum. I've read Dr. Grandin's book, "Thinking In Picutres", which I recommend. I believe she categorized herself, in the book, as autistic, but not deeply so. She is obviously very intelligent as well, and she participated in her own treatment and constructed her own treatment device. One doesn't 'recover' from autism. One reaches a modus vivendi, hopefully. Some folks claim Asperger's Syndrome is a form of autism. And most such people can function successfully in the modern world. One person I heard about is a high functionary in the US government, but I'm not going to mention the person by name because I'm not sure they were 'officially' diagnosed. I think if we look at autistic people as a whole we'll find some who are easily accomodated in regular schools with some special support, and we can also find many who will not fit in at all or without significant support from, as we call it in the US, "Special Ed". But I think that on the Western side of the pond the main approach is to incorporate autistic students into the general school system. |
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26 Jan 10 - 04:58 PM (#2822011) Subject: RE: A Wish for Autism From: Lizzie Cornish 1 Emma, many who have autism, and I include Aspergers in that, suffer very deep depression. Sorry, but I also know of many people on the autism circle who are deeply talented and gifted. Having said that, I'll also say, yet again, the circle is wide and covers many people with many differing problems. The young people I've linked to above, Carly and Tito, were, until very recently, totally unable to communicate. Now, they can....and computers, as I've said before, are now opening up the world for some people with autism, and I think this number will grow and grow as time progresses and those who are now able to communicate this way are able to explain more and more about how they feel, think etc... Both Carly and Tito would, until very recently, have been 'written off' by many people as never ever being able to have any form of coherent thought, let alone intelligence...yet there it all is, in black and white, for the whole damn world to see... Just as Helen Keller emerged from within her silent, closed off world, so are some children with autism, and that is a truly wonderful thing. There are many positives here, amongst the negatives and the heartbreaks..and those two people have turned the heartbreak around, because now they can both comminucate with their families and those who love them so dearly now understand their 'language' and are able to learn it themselves. That has to be a good thing...even though we would all wish, and I doubt there is anyone here who wouldn't...all wish we could make everything OK for those who are on the very severe part of the autism circle. Dyslexia is a gift, Emma. You just need to let go of the stringent rules of language poured down on you by those who are obsessive about grammar. Tell them to stick their heads where the sun don't shine and learn to be proud of who you are and what you do. I love it that my brain thinks as it does, even if others hate it. I really couldn't give a damn, because my brain makes me happy and I'd not change it for the world! :0) It's interesting to hear Dr. Temple Grandin, in the link below, saying that she's happy with her brain too....And why the hell shouldn't she be? Having a brain that thinks and feels differntly is no big crime you know. It's just the way that person is....and the sooner we can all learn to realise that and to accept not only others, but ourselves, as who they and we are, the better this world will be. The Sunshine Boy - Youtube And yes, before everyone starts on at me, I know Helen Keller didn't have autism. Her world was even worse, black, silent, empty, but she too found her way out, for Annie Sullivan became Helen's 'computer' in a way....and computers will help autistic people, not all, I know, but they will help many in the years to come, as can be witnessed above. I use the term 'Circle' simply because that is what I see in my head, Emma, not for any other reason. And Wesley, I am not trying to advocate the suffering of autistic children, but the protection and acceptance of them, just as that video is trying to do, but we HAVE to deal with the bullying first, before they can all feel safe in our vast schools...and we have to ensure there is funding there for EVERY child on the autism circle to have a full time carer at school, until they reach an age or the situation where the children themselves feel ready to be on their own...and happy. We are not dealing with this problem and therefore many chldren are suffering because of it. |
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26 Jan 10 - 05:32 PM (#2822051) Subject: RE: A Wish for Autism From: Emma B "Tell them to stick their heads where the sun don't shine and learn to be proud of who you are and what you do." Thank you Lizzie but I will leave that kind of childish abusive retorts to you and your many examples of it; and, for your information, I am quite content with what I am, the very fulfilling career I have had and with my ability to think logically and creatively. Please desist in thinking you 'understand' me as you claim to understand the people you use as your examples. Now I've said that I don't wish to be drawn into totally pointless 'discussions' with you so please don't bother replying as in fact I have more self respect than to attempt to engage in any exchange with someone so impervious to facts or insultingly dismissive of others experiences and views. Just one more time Lizzie, please try and get this into the pink fluffy clouds you see in your head DYSLEXIA IS NOT A 'GIFT' AUTISM IS NOT A 'GIFT' I'm sure many people with Aspergers syndrome suffer from depression, many people without that diagnosis suffer from deep depression too and you're making me feel a bit depressed myself because I allowed myself to be provoked by your nonsense into joining in this thread. |
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26 Jan 10 - 06:00 PM (#2822089) Subject: RE: A Wish for Autism From: Lizzie Cornish 1 "Please desist in thinking you 'understand' me ..." Cripes! Whatever made you think I understand you? ;0) "Just one more time Lizzie, please try and get this into the pink fluffy clouds you see in your head DYSLEXIA IS NOT A 'GIFT' AUTISM IS NOT A 'GIFT'" Each to their own. I have two children on the circle, dear and very talented friends on the circle, relatives on the circle, and I know, only too well, that many of them have amazing gifts. Half empty Half full The choice is yours. |
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26 Jan 10 - 06:06 PM (#2822095) Subject: RE: A Wish for Autism From: Rasener >>DYSLEXIA IS NOT A 'GIFT' AUTISM IS NOT A 'GIFT' << Couldn't agree more. It worries me sick how my lovely daughter is going to cope when we are not around. GIFT give me a break |
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26 Jan 10 - 06:31 PM (#2822123) Subject: RE: A Wish for Autism From: GUEST,Ebor_fiddler No, indeed Autism is not a gift. If it is, I wish it was one which my 29 year old daughter had never been given. But we have been lucky, when she was younger, my wife fought hard for her. Firstly at that time Autism was not a recognised condition in the UK, so it took three years or more to get a diagnosis. Secondly we had to fight to get our Local Authority, recognised as a "good" one as far as Special Needs were concerned, to fund a place for her at a special residential school and when the time came for her to move to Adult Care, one of the helpers demanded that she be re-diagnosed! MP's came in very helpful at all these points - both Tory and Labour members showed themselves to be helpful and caring people. We have been lucky also in the help we have had both from schools and her current home, the latter is almost a part of our extended family. BUT we have suffered. Our marriage, thank God, has survived, but we went through hell to get where we are today. Autism touches each person differently, our daughter has no speech and is incapable of living independently, but others in a different part of the Spectrum/Circle are recognised genii who have difficulty in personal relationships. But we love them all the same because they are our children and we fight for them against the world - which I find in my reading of even the most "outrageous" contribution above, and I praise God for it. WE CARE FOR OUR KIDS! Thank you for listening. |
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26 Jan 10 - 07:20 PM (#2822154) Subject: RE: A Wish for Autism From: Ruth Archer "My daughter is on the autistic circle somewhere, but it makes no difference to me at all" "My daughter is on the circle, as is, I think, my son." "I have two children on the circle," Lizzie, you still haven't told us whether your children have actually ever been diagnosed with autism - and I don't mean diagnosed by you, I mean diagnosed by a medical professional. Or whether you have decided to interpret their shyness/social awkwardness as autism, based on whatever lists of symptoms you've found on a website somewhere. Because if the latter is the case (and I strongly suspect it is), putting yourself into the same category with these parents who have to live with their childrens' profound disadvantages and disabilities on a daily basis, is quite the crassest, most insensitive load of attention-seeking shite you have ever spouted - and god knows that's going some. These parents know that their children may never grow up to lead normal lives, and live every day with the fear of what will happen to their children once they are gone. How DARE you compare your situation with theirs, or tell them how they ought to feel about this terrible syndrome that has, in many cases, severely limited their children's lives? Shame on you. |
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27 Jan 10 - 04:37 AM (#2822338) Subject: RE: A Wish for Autism From: Dave the Gnome Of course autism and dyslexia are gifts. To someone who chooses to appropriate common words to describe other things anything is possible. A spectrum becomes a circle for instance and disagreement becomes victimisation. It is not new either - Remember when Winscale became Sellafied and radiation became magic moonbeams? It makes the probems go away. Could have a go myself, please? People who post lengthy meaningles diatribes can be known as 'Lizzies' and 'Cornish' becomes synonymous with 'dubious'. See? Easy isn't it. Anyone else want to play this game? DeG |
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27 Jan 10 - 04:43 AM (#2822339) Subject: RE: A Wish for Autism From: Folkiedave I use the term 'Circle' simply because that is what I see in my head, Emma, not for any other reason. Lizzie - when communicating on a forum like this, you confuse people by writing what you see in your head. You may find this difficult to believe but what people see in their head is (generally speaking) not of interest to people here. That's because it is a discussion forum and like it or not it is considered necessary to abide by the rules, some of which are based on convention and are not written down. This is why you get into such arguments with people. (It isn't just me, there have been loads of others as you well know). The difference between them and me is that they give up telling you that you are talking garbage - I don't. This thread is a fine example. You call autism a circle and talk about your children being on it. Virtually everyone else in the world including most of the people you quote and the National Autism Society of Britain and its American equivalent, and all major medical authorities refer to it as a spectrum. You personally can refer to it as a square, circle, or a many-sided round spherical object but when discussing it with people it is best to use terms which everyone understands, not just you. As far as I can see virtually no-one on the internet describe autism as a gift apart from you. Yes, (to save you making links) one or two people do. But they are very few and far between. In looking into the background to this I have come across many discussions between people who have lots of experience of autism, including those who are autistic. Perhaps you could point to somewhere where your vast personal experience of autism has already been involved in discussions. After all a discussion board about autism would seem to be a more appropriate place for you, surely? And you would have been discussing it over the years wouldn't you? So there will be posts you have made on autism boards that have not been removed I would think. Would you be kind enough to point to some? Like Joan I am sceptical of the diagnoses you have offered. Are you in fact looking in some symptoms and deciding personally that the person you are looking at is autistic? Here are some recognised procedures that are used to diagnose autism. You must recognise these. Tell us which ones you and the others have had. Sits back and waits for personal abuse. |
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27 Jan 10 - 06:42 AM (#2822393) Subject: RE: A Wish for Autism From: Dave the Gnome BTW - I have just updated my page... "My wish for 2010 is that people will understand flatulence is not a disease; people with flatulence are not looking for a cure but for ACCEPTANCE....93% wont copy and paste this, will YOU make this your status for atl east one hour" I wish people would just accept that flatulence is a gift. Most of the most gifted people in the world had flatulence. If we were to rid the world of flatulence just think what we would have lost. We need to wake up and smell the... Oh, sorry, bad choice of phrase. DeG |
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27 Jan 10 - 07:23 AM (#2822421) Subject: RE: A Wish for Autism From: Folkiedave Dave, Thanks for posting that. I too have the gift of flatulence. I have seen one specialist who said if I lost the gift she would be positively dleighted. But in fairness there have been others who have mentioned it. They turned their nose up at me. |
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27 Jan 10 - 11:06 AM (#2822603) Subject: RE: A Wish for Autism From: Wesley S Those of us on the flatulence circle really resent the fun you're making of our gift. If you would just accept us and stop opening windows.... |
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27 Jan 10 - 11:22 AM (#2822619) Subject: RE: A Wish for Autism From: Dave the Gnome Old joke warning... I went to the doctors with my flatulence problem. When he got me to drop my trousers and lie face down I was worried. When he started to put the rubber gloves on I started to sweat. He then got a long pole with a hook on it and I paniced. "What are you going to do with that?" I screeched. "Open the windows. It stinks in here..." :D |
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27 Jan 10 - 11:35 AM (#2822626) Subject: RE: A Wish for Autism From: Lizzie Cornish 1 "These parents know that their children may never grow up to lead normal lives, and live every day with the fear of what will happen to their children once they are gone. How DARE you compare your situation with theirs, or tell them how they ought to feel about this terrible syndrome that has, in many cases, severely limited their children's lives?" Do you not read my posts? Do you not read how many times I've told you about Ben, Daisy, Hannah, my own family? Did you not read how Daisy has to be cared for 24/7 in a home, as her parents were not able to cope? Did you not read how every Sunday they bring her home, trying to get her not to sit down in the road? Did you not read how Ben tried to throw himself off his windowsill at age 10, after the vicious bullying he had to endure at school? Did you not read how Hannah was punched in the face and her family had to move away from Sidmouth, to free themselves of the vicious bullying their own, gentle, deeply sensitive and frightened daughter had to endure? Did you not read the countless times I've stated that the circle of autism covers many people, in varying degrees, from the supremely intelligent to the seemingly tragic? Did you not read the very words OF the 'seemingly tragic' that I took the trouble to post, to prove to others that inside the quite, speechless minds of a body and soul that apparently cannot communicate, (on *our* level) lies the also equally intelligent mind of young people who now ARE able to communicate, through computers and let people into 'their world' at long last? Did you not read the many times I have stated that my son, brother and father have dyslexia? (had, in my father's case, as he has now passed on) Did you not read the many times I have told you that my daughter's incredible artistic talent, which has been there from when she was born, goes hand in hand with SO many symptoms of autism that you'd not believe it! Did you not read of the terrible struggles she had at school, my son also, when their deeply sensitive natures collided with the shite that is going on in so many schools? Did you not read how my son was ridiculed, age 7, by his teacher for not being able to spell or write properly? Did you not read when I spoke of dyspraxia, dyslexia and autism all sharing many, many symptoms? Did you not read that it was a 'special' school that saved Ben's life? A school that was set up to help and teach and protect children with severe dyslexia and autistic problems? Did you not see the many, many videos I have posted on here about autism and the *positive* hopeful, true stories that are now starting to happen? Did you not know that I refuse to be negative about *any* autistic child, because, just as Annie Sullivan believed with Helen Keller, I believe there is a child like Carly inside every autistic child....and society needs to pour millions and billions of pounds, dollars into autism to help those children, their parents, their teachers and their families to do all that is now known about to help all children on the autism circle to lead as comfortable a life as they are able to do. Did you not understand that I am on their side, because of how many people I know who are touched by this circle? Or were you so damn bent on being your usual vicious, snidey, sarcastic self, hellbent on ONLY trying to prove to others what a total piece of shite I am? Get out of this thread, Joan...you have no place in it, because this thread is NOT about your bloody insane personal problem with me. Thank you... And I hope, that somewhere in this thread, in the many links I've put in, in the many things other people have also spoken about, there has been much that some people reading this thread, but not contributing to it, may have found of some help. |
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27 Jan 10 - 11:43 AM (#2822636) Subject: RE: A Wish for Autism From: Lizzie Cornish 1 BBC News - Luke Jackson's story - Why My Autism is a Gift ..in which Luke, who has Aspergers, also talks of being bullied at school... ...just in case people don't believe what I'm saying... |
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27 Jan 10 - 11:59 AM (#2822652) Subject: RE: A Wish for Autism From: Lizzie Cornish 1 And in here, you will discover Dr. Temple Grandin talking about how people on the autism circle are so often very gifted. A Profile of Gifted Individuals with Autism >>>>>In citing work done on autism by Robin Clark in 1993 she explains: "The disorder may occur if a person receives too big a dose of genetic traits which are only beneficial in smaller amounts. For example, a slight tendency to fixate on a single subject can enable a person to focus and accomplish a great deal, whereas a stronger tendency to fixate prevents normal social interaction" (Grandin, 1995, p. 177). She concludes that "the genetic traits that can cause severe disabilities can also provide the giftedness and genius that has produced some of the world's greatest art and scientific discoveries" (Grandin, 1995, p. 187). <<<< So there you go, no need to take just my word for it any longer. You have it from one of the most wonderful minds, a mind on the autism circle itself, Dr. Temple Grandin, and if anyone has just found this thread, then you can hear the supremely intelligent Dr. Grandin talking on the link below, which I'll repost as it's got lost in all these messages... Dr. Temple Grandin - Youtube - Talking about Autism |
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27 Jan 10 - 12:33 PM (#2822681) Subject: RE: A Wish for Autism From: GUEST,Ebor_fiddler Sorry, I hadn't realised that this was a personal slagging thread, I thought it had something to do with caring for people with Autism. I'll cut off now. My sincere apologies for interfering. Love and Fishes. |
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27 Jan 10 - 01:04 PM (#2822704) Subject: RE: A Wish for Autism From: Folkiedave I have joined, and I hope many others will. Try this. |
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27 Jan 10 - 01:09 PM (#2822708) Subject: RE: A Wish for Autism From: Lizzie Cornish 1 It is. 13 year old Luke's book 'Freaks, Geeks and Aspergers Syndrome' - (see BBC link above) |
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27 Jan 10 - 01:29 PM (#2822719) Subject: RE: A Wish for Autism From: Emma B Lizzie I HAVE read that you describe your son as suffering from dyslexia as he apprantly had difficulty in being 'able to spell or write properly' I sympahize with that as I had the same problem in school myself. Unfortunately being of the generation of your brother, I was never formally diagnozed (dyslexia not being recognized until the 1980s) Under the terms of the 2005 Disability Discrimination Act, all people who are in full-time education (whether they are children, or adults) are entitled to a dyslexia assessment so no doubt your son was able to benefit from this rather than the very dubious 'free on-line' so called assessments I'm suprised that the older members of your family (particularly your late father) were diagnozed but maybe this is a 'diagnosis' you have susequently applied to them? However, as I said previously, it's not a bundle of fun and certainly in no way a 'gift' it has certainly not given me any outstanding talents but neither has it prevented me in achieving what I set out to do. Dyslexia is a specific learning difficulty which mainly affects the development of literacy and language related skills which may not match up to an individual's other cognitive abilities. PLEASE DO NOT CONFLATE DYSLEXIA WITH AUTISM - whatever so called circle you imagine in your head! Autism is defined in terms of a triad of impairments: social relationships social language and communication skills imagination The triad is usually accompanied by repetitive patterns of behaviour and interests, and often by challenging behaviour "Around 75% of children with autistic spectrum disorders have general learning difficulties that fall in the moderate (IQ 35-50) range. About 10% of children with autistic spectrum disorders have some special skill at a much higher level than the rest of their abilities, for example music, art, numerical calculations or jigsaw puzzles. Some have a remarkable memory for dates and things that particularly interest them." "Children with Asperger Syndrome are amongst the most able of those within the autistic spectrum and will often be educated in mainstream schools as they do not have such an obvious learning disability. Unfortunately, children with Asperger Syndrome have a higher degree of self-awareness so often more aware of the impediments to normal social relationships that they experience and this can lead to a painful degree of distress or anger towards others." (International Psychology Services)in association with the UK National Autistic Society While some see pragmatic language disorder as the mild end of the autistic spectrum, others see it as a distinct but overlapping area of difficulty. The diagnosis of autism is a medical one, and will usually be made by a Psychiatrist. Diagnosis is clinical with reference to the criteria established by the American Psychiatric Association in the Diagnostic and Statistical Manual for Mental Disorders - Fourth Edition (DSM-IV, 1994). So far you have not answered the question asked a couple of times whether your children have been formally diagnozed with autism which is a somewhat different situation from your description of your daughter - "(her) incredible artistic talent, which has been there from when she was born, goes hand in hand with SO many symptoms of autism that you'd not believe it!" Lizzie this question is not "vicious, snidey, or sarcastic" It is a simple request to enable people to assess the level of experience you claim. |
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27 Jan 10 - 01:32 PM (#2822721) Subject: RE: A Wish for Autism From: Emma B sorry a few words got left out there it should read Assessment of Autistic Spectrum Disorders takes place by a Child and Adolescent Psychiatrist, an Educational or Clinical Psychologist in the UK |
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27 Jan 10 - 02:49 PM (#2822779) Subject: RE: A Wish for Autism From: robomatic FYI Wednesday- Temple Grandin is going to be on Talk of The Nation in about ten minutes. You can probably download it from NPR.ORG by tomorrow. |
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27 Jan 10 - 02:59 PM (#2822785) Subject: RE: A Wish for Autism From: olddude wish I could get my hands of the guy that invented the b and the d's both still look exactly the same to me. But there is life with Dyslexia. I have published in every scientific journal in my career on software engineering ... all I can say ... Thank God for spell checkers. When I grew up we were just called stupid. Then a great teacher said maybe there is something with this kid ... gave me a battery of IQ tests, then I went from stupid to gifted .. talk about messing up a kids head ...!! Thank God they have ways of helping today instead of leaving a kid to learn to read by himself as in my case ... Autism, however, a curse for our children .. I wish with all my heart it ends. Thank you |
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27 Jan 10 - 04:44 PM (#2822901) Subject: RE: A Wish for Autism From: Lizzie Cornish 1 From Robomatic: "FYI Wednesday- Temple Grandin is going to be on Talk of The Nation in about ten minutes. You can probably download it from NPR.ORG by tomorrow." Thank you, robo. Here's the link..although I can't listen to the programme 'live' at present..I'll try again tomorrow. Temple Grandin on NPR - Talk of the Nation - A Life With Animals Dan, tell me about those bloomin letters! Also S 5 and 8, gee, even to this day I have to write them like a 5 year old, as it confuses my brain totally.. |
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27 Jan 10 - 05:13 PM (#2822945) Subject: RE: A Wish for Autism From: Folkiedave Lizzie - it is clear you dodge all sorts of answers to questions you find difficult. The most obvious ones are those relating to how and when these diagnoses of your family were made, especially your late father. Another is where other than this forum you have made a contribution to discussions about autism - given your vast personal knowledge, theories and beliefs. It actually looks like you posting (a relatively common) message from Facebook (suitably altered for autism) and then looking up articles and programmes to support your argument. It certainly does not look as if you had any previous knowledge on the subject other than some self-diagnosis related to what you have read. When did you first mention that your father was autistic? This thread. And whilst you have mentioned your children before I don't recall you describing them as autistic before. Dyslexic yes, autistic - no. |
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27 Jan 10 - 06:22 PM (#2823005) Subject: RE: A Wish for Autism From: Lizzie Cornish 1 My father was not autistic, but dyslexic. I do not have to answer any of your questions, Dave. Believe it or not, YOU are not compulsory. |
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27 Jan 10 - 06:27 PM (#2823007) Subject: RE: A Wish for Autism From: Lizzie Cornish 1 Taken from the National Autistic Society site here... "Developmental disorders that are not in the autistic spectrum but often occur together with an autistic spectrum disorder These developmental disorders can occur on their own - that is, the child or adult concerned does not have the triad of impairments. However, the disorders listed below very often occur as part of the picture of an autistic spectrum disorder. One of the commonest mistakes made by clinicians lacking experience with autistic disorders is to observe the person's clumsiness, or reading difficulty, or poor attention span and to diagnose that as the main problem. They miss the fact that underlying the obvious difficulties seen on the surface is an autistic spectrum disorder with the characteristic social impairments. It is of the greatest importance that the autistic spectrum disorder is recognised and the appropriate help and services provided. Attention deficit/hyperactive disorder (ADHD) Poor attention span together with marked overactivity. Hyperkinetic disorder Marked overactivity without poor attention span. Attention deficit disorder (ADD) Poor attention span without marked overactivity. Tourette's syndrome A condition in which the person has many sudden involuntary, jerky movements and vocal noises they cannot control. Dyslexia Specific difficulty with reading. Dyspraxia Specific difficulty with co-ordinating movements. Developmental co-ordination disorder The same as dyspraxia. Motor coordination disorder Again, the same as dyspraxia. Disorder of attention, motor co-ordination and perception (DAMP) Used when the person has a combination of these problems. The perceptual problem may, for example, be dyslexia." My friend, diagnosed dyspraxic whilst at University. She has symptoms of autism, including a very noticeably heightened sense of smell, touch, vision, sound, leading to many anxieties. Her son, diagnosed dyslexic by his school, with the same heightened senses as his mother, together with the 'timetable' questions which Spaw speaks of above, wanting to know what is happening 'next' all the time.. My brother, severely dyslexic, with again, the same oversensitive senses. Deeply creative and now realising that he lives his life very differently to what others consider 'normal'. Ii believe that there are many, many crossover points on the circle, and that is why so often the autism part is not diagnosed as it should be, as stated above by the NAS. And then, of course...there is Tourette's....and again, I have a friend whose son was finally diagnosed with this, after years of her begging the doctors to investigate further, in fact, since he was a little baby. He never slept more than an hour a night...My brother was the same, two hours, if mum was lucky and that went on for many years... And here is the amazing story of a man called Nick Van Bloss, who has suffered very severe Tourettes since birth. Then he found that playing the piano stopped the Tourettes completely. He has always loved music. He went on to become a wonderful pianist. He also went on a journey to see if it was the Tourette's that gave him his gift...and in doing so, discovered someone with a very similar story.. Nick's story - BBC Horizon documentary 'Glad to be Mad' Nick's Website |
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27 Jan 10 - 06:45 PM (#2823021) Subject: RE: A Wish for Autism From: Folkiedave You are correct - you don't have to answer anyone's questions. But people can see when you duck and dive. And that's what people remember. And you will note that the National Autistic Society refers throughout to "AUTISM SPECTRUM DISORDER". But then of course they don't have the advantage of seeing inside your head. |
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28 Jan 10 - 04:01 AM (#2823258) Subject: RE: A Wish for Autism From: Dave the Gnome I can answer for you Lizzie. Neither you or any of your family have been diagnosed as autistic by a qualified professional. This is something you will bluster and twist and squirm about but you will not deny it. You have cynicaly and callously jumped on the autism bandwagon and if you carry on like this you will do no end of harm to the people who genuinely suffer from the condition. It is you who should never have started this thread because autism realy does have nothing to do with your mad twitterings. DeG |
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28 Jan 10 - 04:04 AM (#2823260) Subject: RE: A Wish for Autism From: Lizzie Cornish 1 Dave, I am a free person, a free thinker, and I will only ever answer a question if I choose to. The reasons I choose not to belong to me entirely, but you are free to make up your own mind about those reasons, so long as you appreciate they are *your* reasons, not mine. I have ALWAYS called the circle of autism exactly that. I always will. I think outside the 'expert' boxes, because I have my own mind, ideas and thoughts and I know that there is always something new to be discovered, a different way of looking at things, which may open new doors and opportunities. You say 'Why?', I say 'Why not?' Below is a highly talented artist, who can reproduce every single detail of what he sees, no matter how minute. His mind 'takes the photographs' and leaves them there for him to put on to canvas or paper... The amazing artwork of Stephen Wiltshire |
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28 Jan 10 - 04:23 AM (#2823269) Subject: RE: A Wish for Autism From: Folkiedave I have ALWAYS called the circle of autism exactly that. Most people would regard that as ridiculous since you seem to be the only person who does. And when you say "always", what you mean is the beginning of this thread. But it is OK Lizzie, words can mean what you say they mean. I think outside the 'expert' boxes, because I have my own mind, ideas and thoughts and I know that there is always something new to be discovered, a different way of looking at things, which may open new doors and opportunities. That's great and I am delighted for you. I look forward to hearing about them. You say 'Why?', I say 'Why not?' Actually Lizzie you talk horlicks and I ask "Why?". Not the same thing at all. |
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28 Jan 10 - 04:31 AM (#2823275) Subject: RE: A Wish for Autism From: Ruth Archer "One of the commonest mistakes made by clinicians lacking experience with autistic disorders is to observe the person's clumsiness, or reading difficulty, or poor attention span and to diagnose that as the main problem. They miss the fact that underlying the obvious difficulties seen on the surface is an autistic spectrum disorder with the characteristic social impairments." So you have decided that this means that every clumsy or socially backward person you have ever known is autistic. That's what I thought. |
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28 Jan 10 - 04:42 AM (#2823279) Subject: RE: A Wish for Autism From: Dave the Gnome Obviously ignored the first time so I will try again. Lizzie - Neither you nor any of your family have been diagnosed as autistic by a qualified professional. By stating that everyone with any of the symptoms you mention could be suffering from autism have you the remotest idea what damage you are doing to people who genuinely want to help? If we were to include everyone with any of the symptoms in your 'circle' I think you would find that 60 or 70% of the population, having exhibited at least one trait at some time in their lives, would be diagnosed by you as being autistic. If more than 50% of the population have the same condition it is obviously the norm and should, therefore, not be treated at all. Is that what you want? There is one thing I would agree with. You realy do need help. DeG |
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28 Jan 10 - 04:58 AM (#2823289) Subject: RE: A Wish for Autism From: Rasener A circle of Autism normally refers to a group of people who have been or are affected by Autism and meet on a regular basis. There are many groups in Lincolnshire. However, when you are diagnosed with Autism you have an Autistic Spectrum Disorder and that diagnosis can only be given by specialists in that field. From NAS Who will diagnose my child? There are a number of different health professionals who may be involved in diagnosing an ASD. Most frequently these would be psychiatrists, clinical psychologists and, in the case of children, paediatricians. In some areas there may be 'multi-disciplinary teams' (teams made up of a number of different health professionals) involved in diagnosing autism. It is important to make sure that whoever sees your child has a good knowledge of ASD. Any parent with an ounce of decency for their child/chidren will fight long and hard to get a correct diagnosis. If you go to a GP that has no knowledge of Autism, you stand the chance of not getting you child diagnosed correctly. Autism and ADHD seem to go cap in hand with families. However, try and get an ADHD child diagnosed is like p*ssing in the wind. We knew at a very early age that our older daughter was ADHD, but try as we would, they would not allow a diagnosis unless she was over the age of, I think 5/6 so that they could eleminate the temper tantrums. My daughter was about 9 when we finally decided to refer her for diagnosis. Fortunately one of our doctors at that time was interested in Autism and ADHD. So she referred her to a specialist at the hospital. By that time I was well versed on Autism and ADHD becuase of my other daughter being diagnosed with Autism. The meeting with the specialist was a total waste of space. He knew nothing about Autism or ADHD and just sat there and said "There is nothing wrong with this child, that good parenting wouldn't solve". F***ing pillock. Fortunately the specialist that was handling my Autistic daughters case, having chatted to him about it, was prepared to do a second opinion. We visited him for about 10 weeks whilst he did lots of different tests on her. At the end he gave me a complete diagnosis and explained the results in a very clear way to me. He reffered her to the psychiatrist for final diagnosis. One meeting and she was officially diagnosed with ADHD. Something we knew from the age of 3. So in fairness it is very possible to be Autistic or ADHD without diagnosis, becuase of the system and people who know FA about it. |
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28 Jan 10 - 05:01 AM (#2823291) Subject: RE: A Wish for Autism From: Rasener Just to add that whilst we were happy to get the correct diagnosis for both our daughters, we were very upset that they had it. That will go with us to the grave. |
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28 Jan 10 - 05:29 AM (#2823306) Subject: RE: A Wish for Autism From: Dave the Gnome Thanks, Villan, very enlightening post and very good of you to share your experiences with us. You say "Autism and ADHD seem to go cap in hand with families". Does that mean that ADHD is an autistic spectrum disorder or that it is a seperate but related condition? As you have experience of both I would appreciate your views. It is also interesting to note that a diagnosis of ASD "can only be given by specialists in that field" as this is the point I am trying, and obviously failing, to get across. I am glad you eventualy received the right diagnosis and you have my sympathy and admiration for doing so. Without going into too much depth I underwent a similar battle for a less serious issue but I do know how frustrating it can be! Cheers DeG |
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28 Jan 10 - 05:29 AM (#2823307) Subject: RE: A Wish for Autism From: Folkiedave And my sympathy goes out to you Les. |
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28 Jan 10 - 05:50 AM (#2823315) Subject: RE: A Wish for Autism From: Folkiedave So in fairness it is very possible to be Autistic or ADHD without diagnosis, becuase of the system and people who know FA about it. Indeed Les and I doubt anyone would argue about it. That is not the same thing as declaring to the world that someone is definitely autistic on the basis of some scanty knowledge gleaned from the internet. And of course that is not the way Lizzie uses "Circle of Autism". As for Stephen Wiltshire who of course is well known throughout the world and in fact has an MBE for services to art, I wonder if you went past the first page of his website Lizzie? Stephen was lucky enough to be diagnosed as autistic at the age of three. He went to a community special school. Here is what the latest OFSTED Report says awarding it a top grade: Queensmill is an outstanding school and the quality of provision in both the Foundation Stage and Key Stages 1 and 2 is excellent. The school recognises that in order for pupils to learn, they must first gain an effective means of communication and overcome the difficulties and anxieties brought about by their autistic spectrum disorder (ASD). The achievement and personal development of pupils throughout the school is outstanding as a result From not speaking he was fluent by the age of nine. Note Lizzie how succesful the intervention of specialist teachers was with Stephen and how they nurtured his talents. What a shame you did draw people's attention to it. Now instead of arguing on here - and since you care about such things - have you do anything to help increase the provision of such intervention? No? I thought not. |
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28 Jan 10 - 05:55 AM (#2823320) Subject: RE: A Wish for Autism From: Rasener David ADHD thats a difficult one. This article helps to understand better (much better than I could put it). http://www.nas.org.uk/nas/jsp/polopoly.jsp?d=1581&a=3106 When my daughter was disgnosed with ADHD, they did a special set of tests to see if she had Aspbergers as well. It would seem that the two are possible. With my daughter, she didn't appear to be Aspebergers, but the specialist was concerned with one part of the result and that part does show up with her at times. I sometimes look and think "Blimey she is more autistic than my daughter who is autistic". Whilst she doesn't have the same difficuties in socialising, she does have issues with her behaviour with her freinds when she gets hyper and at that point, it is very difficult to get her calmed down. I am pretty sure I am ADHD, but have never been diagnosed. I have only realised this by reflecting back on my life and seeing and learning about my daughter. I am pretty sure my Dad was as well. I suppose it would be nice to get that confirmed, but at my time of life, I don't think I will bother. Hope that helps. |
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28 Jan 10 - 06:16 AM (#2823334) Subject: RE: A Wish for Autism From: Dave the Gnome Great article, Les, thanks for posting it. The answer it gives me, in a nutshell, is that ADHD is not strictly in the autistic spectrum as ADHD sufferers rarely suffer from communication problems. Autism and ADHD can however be closely linked and people with one often suffer from the other. The important thing is that it is very complex and needs professional diagnosis. The other thing is that it is funny you should mention your own ADHD - I started this thread , only a couple of weeks back, wondering the self same thing about myself! I think we all suffer from something is the conclusion I am rapidly drawing:-) Cheers Dave |
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28 Jan 10 - 07:07 AM (#2823359) Subject: RE: A Wish for Autism From: Lizzie Cornish 1 I've known about Stepen Wiltshire for many, many years... Dave, you and your gang can throw whatever you want at me...imagine what is in my head, answer your own questions about me, but it makes not a jot of difference to me. This thread has touched the people it was meant to touch, and that is all that matters to me. Now if you, or your pals, have anything positive, helpful or illuminating to add to this thread, which is actually for the benefit of those with autism, or who are touched by it in their family, then please...feel free. If you want to personally verbally abuse me, belittle me, or make out that I, or my children, are anything we are not, or anything that we indeed are, then please...start a separate thread on the subject, but not on this board, as personal abuse isn't permitted, and get the hell out of this one. I tell you what, you can go over to the Folk Against Facism and write whatever you want about me in Facebook, as does the person who runs that page...who happens to be on this thread too. Thank you ever so much. |
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28 Jan 10 - 07:17 AM (#2823372) Subject: RE: A Wish for Autism From: Lizzie Cornish 1 And here is a wonderful blog about a man whose son is autistic. It follows their journey through the unhappiness, tears and laughter. Edward's blog, most recent posting first... Edward's feelings about Harry Chapin and his 'Cat's in the Cradle' song, which hugely inspired him when he became a father... |
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28 Jan 10 - 07:18 AM (#2823374) Subject: RE: A Wish for Autism From: Dave the Gnome Third time pays for all, as they say. Lizzie Neither you nor any of your family have been diagnosed as autistic by a qualified professional. I think by the lack of response we have our answer to that and can move on. This thread has touched the people it was meant to touch, and that is all that matters to me. Just who has it touched? It has alienated both people affected by autism and those who have not. Is that 'all that matters' to you? If you want to personally verbally abuse me, belittle me, or make out that I, or my children, are anything we are not, or anything that we indeed are Difficult to verbally abuse anyone via an internet forum but I think we can forgive that one. We all make mastikes. But, as you said, personal abuse is not permitted on this forum so, just by virtue of the fact that none of the posts have been deleted I think you must agree that personal abuse has not occured here. So what is the issue? DeG |
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28 Jan 10 - 10:16 AM (#2823493) Subject: RE: A Wish for Autism From: SINSULL Here ya go - positive and inspirational and about as meaningful as thinking "Outside the expert box" to diagnose your children without professional input. Have you reallt lebelled your children autistic without a professional diagnosis? Do you realize how cruel and in fact abusive that is? Everything is beautiful in its' own way, Like a starry summer night or a snow covered winter's day. Everybody's beautiful in their own way, Under God's heaven, the world's gonna find a way. Everything is beautiful in its' own way, Like a starry summer night or a snow covered winter's day. Everybody's beautiful in their own way, Under God's heaven, the world's gonna find a way. Under God's heaven, the world's gonna find a way. |
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28 Jan 10 - 10:43 AM (#2823518) Subject: RE: A Wish for Autism From: SINSULL I feel incredibly stupid. It never occurred to me that anyone would consider their child autistic unless he or she had been diagnosed by a licensed professional. Even worse, then criticize the school system for labelling the same children. Shaking my head in disbelief and anger that you would dare to compare your child's "symptoms" to the symptoms of children described here who in fact are autistic. And preaching to them about the Gift of Autism. No one here has belittled you. You have done a colossal job of belittling yourself and throwing into question every statement you have ever posted re: schools, autism, parenting, etc. Well done. |
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28 Jan 10 - 12:28 PM (#2823649) Subject: RE: A Wish for Autism From: The Borchester Echo Result: the idiot doctor who distorted his research to cause a scare over a non-existent link between the MMR vaccine and autism and madlizzie's dangerous crackpot theory that autism is a "gift" both demolished in one afternoon. Two nutters down, sadly still rather a lot to go. |
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28 Jan 10 - 01:16 PM (#2823691) Subject: RE: A Wish for Autism From: Emma B Just time to post an inspirational quote from Pope Paul John 11 then "Stupidity is also a gift of God, but one mustn't misuse it" |
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28 Jan 10 - 01:33 PM (#2823702) Subject: RE: A Wish for Autism From: Rasener Borchester Echo Don't believe everything you see about Andrew Wakefield. He stood up to the stupid f***ers who insist that the MMR cannot create Autism. I have talked with Paul Shattock of Sunderland University and am satisfied that the MMR jab can create Autism. However, the majority of children will not be affected by the MMR jab. I talked with my doctor and various health authorities and they agreed that it was not necessary for my Autistic daughetr to have the second jab, and to this day she hasn't and won't. This is one big F*****ng cover up from the health authorities, who need parents to make their children have the MMR. Again would people who are not affected by Autism in their family make stupid comments when they domn't know F*** all about it. Brain washed springs to mind as far as the health authority people are concerned. |
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28 Jan 10 - 01:40 PM (#2823706) Subject: RE: A Wish for Autism From: Rasener *Again would people who are not affected by Autism in their family make stupid comments when they domn't know F*** all about it. Again would people who are not affected by Autism in their family, please stop making stupid comments when they don't know F*** all about it. |
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28 Jan 10 - 02:08 PM (#2823726) Subject: RE: A Wish for Autism From: Emma B "Opinion is divided in the medical establishment on the wisdom of pursuing Wakefield – and particularly his colleagues who played a lesser role in the drama – at the GMC. Wakefield was the lead author of the study and chief proponent of the theory that there was a link between the MMR jab, given to children around the age of 18 months and again at four years, and a form of bowel disease and autism. The paper was a collection of just eight case studies of children. The Lancet paper conceded that the battery of medical tests to which the children were subjected had not established a link, but even the suggestion that the jab could be responsible for autism caused a furore. The scientific establishment struggled in vain to produce evidence that would reassure the public. Studies were commissioned and published showing that there was no major difference in the rate of autism among cohorts of children before and after the combined jab was introduced in the UK, but Wakefield stuck to his guns and claimed that others had replicated his findings. The story took a new turn with revelations that Wakefield had received legal aid funding to carry out his study, through lawyers acting for children whose parents believed their autism was caused by the MMR jab and wanted to sue the manufacturers. It was alleged that he had not revealed this to the Lancet, which then retracted part of the paper. The latest Health Protection Agency figures show that uptake of MMR is 85%, which is still insufficient to ensure immunity in the community. Before the MMR scare, uptake stood at 92%." - From today's Guardian The GMC has additionally ruled that his methods, were not in the clinical interest of the participants as they were not going to receive therapeutic benefit from invasive tests which included spinal taps, . In one instance described, Dr Wakefield took blood samples from children at his son's birthday party, paying them £5 each in the late 1990s and then laughed about it during a US presentation in March 1999. The GMC panel described his 'callous disregard for the distress and pain' of the children he studied, and said he had abused his trust as a medical practitioner and brought the medical profession into disrepute. Nevertheless Dr Wakefield is unrepentant about his research and remains convinced that some children are vulnerable to damage by the MMR vaccine. But he has remained almost a lone voice with little in the way of scientific support. Nevertheless as Les states some parent groups have remained unconditionally supportive, convinced that the vaccine caused autism in their children Despite the rationale of the official position some of the media presented this as Government intransigence and evidence of a cover up claiming ministers were protecting the pharmaceutical industry rather than the people. |
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28 Jan 10 - 03:21 PM (#2823799) Subject: RE: A Wish for Autism From: mg My brother with probable autism was diagnosed by my niece who is a beautician..she saw what had not been professionally diagnosed, was misdiagnosed as brain damage by some of us, and the rest in denial that someone as obviously intelligent as him couldn't somehow just act more normal, get less marginal jobs etc. Can be done. mg |
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28 Jan 10 - 03:31 PM (#2823805) Subject: RE: A Wish for Autism From: The Borchester Echo "Everyone has a right to be stupid; some people just abuse the privilege" Part 93 . . . like citing another "autism is a gift" nutter of Sunderland Remedial Primary School over and above the academic weight of the General Medical Council. Measles can be a very serious illness. I almost died of it when I was 7. |
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28 Jan 10 - 04:00 PM (#2823837) Subject: RE: A Wish for Autism From: Lizzie Cornish 1 "Don't believe everything you see about Andrew Wakefield. He stood up to the stupid f***ers who insist that the MMR cannot create Autism. I have talked with Paul Shattock of Sunderland University and am satisfied that the MMR jab can create Autism." I'm with you on this one, Villan. # Yesterday, on BBC Radio Devon they were talking about the pressure being put on parents to have Swine Flu jabs for their children. Apparently there are now leaflets telling people NOT to do this, being put through Devon letterboxes, by anonymous posters. The lady they interviewed who was against the jabs said that nowhere near enough tests had been carried out..and I have to say that the hysteria and 'selling' that has surrouned Swine Flu has been very scary. I think Andrew Wakefield knows exactly what he's talking about...and the Government's stubborn refusal to give singular jabs, when the public has demanded them, has been absolutely prepostorous. How many children have been affected, purely because of the mania to save money? |
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28 Jan 10 - 04:09 PM (#2823844) Subject: RE: A Wish for Autism From: SINSULL As I understand it, the problem with singular jabs given one year apart is that the child is still vulnerable to the two diseases not covered. Here in the States, you can request and get single injections. Wakefield admitted to some less than scientific research and at least ten of his colleagues withdrew their names from his paper's conclusions when they discovered his "fudging of the facts". It does not mean he is wrong. But no one has been able to duplicate the findings because of flawed methods. |
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28 Jan 10 - 04:09 PM (#2823846) Subject: RE: A Wish for Autism From: Lizzie Cornish 1 Diane, most parents don't want to NOT vaccinate their chidlren, they simply don't want to give them masses of vaccines at one go. To put all that into a tiny baby at once seems total madness to me. My son had a very adverse reaction to his first jab. It was the only one he had. Many parents even went to the trouble of travelling abroad to get their children vaccinated in single doses.... The Government is, in my opinion, hugely at fault here...and if you believe the the Corporate Medical World has yours, or your child's interest at heart, well....consider The Constant Gardener...and just think how much money has been made from Swine Flu....everywhere you go there's 'antiseptic wash' and 'Flu Packs' on sale in your chemist...with everything you need to protect you as much as possible from er...something that never happened.... If you create panic, and already have invented the solution, then you stand to make an absolute fortune! You can also sell your product to Governments under the 'save loadsa lovely money!' slogan by pouring doses of mixed up vaccines into babies in one go....."Think of the money you'll save!" Pah!! |
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28 Jan 10 - 04:17 PM (#2823855) Subject: RE: A Wish for Autism From: Lizzie Cornish 1 Diane, if you do not believe the autistic mind has not produced some of the most stunning scientific discoveries, works of art, books, songs, poets etc...then I suggest you take it up with Dr. Temple Grandin, who has Aspergers herself and who knows full well what she's talking about when she says what I have said. |
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28 Jan 10 - 05:48 PM (#2823942) Subject: RE: A Wish for Autism From: Ruth Archer The dangers of self-diagnosis: "While there are some conditions which are much like autism, there are other conditions, such as having a very high IQ or simply being late in talking, which often include characteristics listed on checklists for autism. These are open invitations to false diagnoses. We would see the dangers immediately if people who wear glasses were included on "the blindness spectrum" or people with harmless moles were included on "the cancer spectrum." Blindness, cancer and autism are all too serious — indeed, catastrophic — to use loose definitions that fudge the difference between accurate and inaccurate diagnoses." Thomas Sowell, Crusades Versus Caution, Part II |
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28 Jan 10 - 05:54 PM (#2823949) Subject: RE: A Wish for Autism From: Ruth Archer Undiagnosing autism An autistic man engages in a little de-bunking. |
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28 Jan 10 - 06:27 PM (#2823983) Subject: RE: A Wish for Autism From: Emma B What Dr. Temple Grandin actually said in a recorded interview "and [with] a little bit of the trait, you get einstein. There is a book called Asperger's and Self Esteem and its about famous scientists and musicians that probably were aspergers" Note - 'probably' In addition Temple Grandin (who does have some very original views about animal 'savants') was herself was quoting something she had read - a book by Norm Ledgin an American writer of historical fiction and journalist He has also he won top awards including the National Safety Council Trustees' Award, "Flame of Life," 1963; Award of Honor, Association of Safety Council Executives, 1974; and Distinguished Service to Safety Award, National Safety Council, 1974. He also served the national organization as chairman of its Driver Improvement Program ("defensive driving"), 1967-68. In fact Lizzie you are quoting someone quoting someone else - hardly the 'independent' thinking 'out of the box' you claim. |
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28 Jan 10 - 07:23 PM (#2824040) Subject: RE: A Wish for Autism From: GUEST,999 I am not in agreement with all Liz's views on the subject. However, I do find some of you very abusive. The circle she speaks of does indeed refer to ASD--something I HAVE been diagnosed with and also another member of my family. There are way too many self-declared experts here, Dave. As for my 'bullshit' remark to you, you have a history of following her around and also of getting really nasty with her at times. I do NOT fuckin' care what your history is. In fact, there are a half dozen people here who have done exactly as you do. No two autistics are alike. There are both high and low functioning. The remark on this thread I appreciate most is the one in which a parent (and I'm a parent of an ASD child, too--and YES, diagnosed) said that what he worries most about is preparing his child for this world when he and his missus have moved on--read died. There is NOTHING on this earth that scares me as much as that scenario, and being that death is likely not all that far away for me, I worry indeed about my child, because there are too many misunderstanding assholes around. Please don't be one of them. Liz is aware that autism is not a gift. If I'd had the chance to have a 'normal' child, do you really think I'd not have wanted that, even if only to spare my child the pain she's endured at the hands of people who would NEVER dare to say in front of me shit they've said to her? A few made the mistake of teasing her in front of her sister. She received a few days school suspension. She was always a good martial artist. That stuff aside, the Daves here ought to take a seriously good look at themselves. I'd prefer to message my remarks with the OP, and I do. |
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28 Jan 10 - 07:39 PM (#2824063) Subject: RE: A Wish for Autism From: Jeri I think there are some people who think a person should be chased out because they can't stop attacking her. Get real. The problem is simply that you don't have the the brains and/or self control to walk away. No, I don't think autism is a gift, but one can hate the condition and still appreciate the people who have it. I think the world would be better off without it, if only because it provides the small-minded idiots that get their rocks off attacking others with more victims. But as with any adverse situation, people who are autistic have occasionally done some truly amazing things to adapt. I can appreciate that, even if I'd wish they never had to work so hard. |
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28 Jan 10 - 08:14 PM (#2824099) Subject: RE: A Wish for Autism From: GUEST,Rose I've read through this thread a few times now, and decided that I had to comment. I am currently awaiting a diagnosis of an Autistic Spectrum Disorder. I was referred a few years ago, but as I am an adult (mid-twenties), it has taken an extremely long time for even the chance to be diagnosed. Throughout my life, I have known that my mind doesn't work in the same way as other peoples'. I had to teach myself how to recognise emotions, jokes, how to speak to people I didn't know (and sometimes, even those I did), and this made me feel like an "outsider". I went to mainstream school, where I was severely bullied, because I didn't have the skills to defend myself. As I got older, I found myself trying to escape the world, turning away from the people and things I loved, locking myself away in my room, my own little world, the only place I felt safe. I hated being forced to leave my cocoon, and would lash out because I felt threatened, my "fight or flight" mechanism going into overdrive. I even felt that life was not worth living, and tried to escape it. I am slowly becoming more able to face the outside world (I'm now a student), but all the time, I am terrified inside, no matter how confident I appear. I allow very few people into my room in halls, and when, during Fresher's Week, my room was invaded without warning by several girls from other flats, who were friends with one of my flatmates, I ended up close to tears because I was so scared. The first semester of University was one of the most frightening experiences of my life. Too many strange people. Too noisy. Too many crowds. I couldn't cope. I came close to dropping out because of the fear. Thankfully, my tutors are supportive, I have a fantastic boyfriend and I'm now receiving counselling. It's not much, but until I have an official diagnosis, it seems like the best thing I can do. I love music, and that is often the first thing I turn to if I need an escape but am unable to get back to my sanctuary. I've always got my iPod on me, even if I know I won't be able to listen to it. It actually upset me reading some of the comments on this thread. Certain people seem to think they know best if they work with children on the autistic spectrum. I can understand the parents of autistic children, but as has been mentioned, we are not all the same. I have often felt that my life would be so much easier if I wasn't the way I am. I wouldn't feel so useless when I misinterpret things. I wouldn't get looked at as though I am stupid when I pluck up the courage to ask for clarification on something that everyone else understood ages ago. I adore drama and acting, because I see it as my only chance to be someone completely different, who can stand up to people, who is accepted, who is "normal". No matter who I'm playing, I can be the person I wish I could be in real life, the person I can never see me as. Thank you for reading this. |
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28 Jan 10 - 08:25 PM (#2824107) Subject: RE: A Wish for Autism From: Emma B "Thank you for reading this." Thank you for sharing I hope that as a 'guest' THIS will not be deleted |
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29 Jan 10 - 01:15 AM (#2824221) Subject: RE: A Wish for Autism From: Rasener Rose Thank you for sharing that. Your comments and the things you do/have expeienced, I see in my daughter, but she is only 14. My very best wishes to you for the future. Stay strong. Les |
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29 Jan 10 - 03:53 AM (#2824259) Subject: RE: A Wish for Autism From: Lizzie Cornish 1 Dear Rose, I send you much love, and all good wishes for the future. I know how hard it is to go 'out there' into the world for some people and I admire the inner strength it's taken you to do just that. You are an amazing person, who, as most of us will see from your message above, has the ability to touch many others with your inspirational words. Never, ever feel you are stupid, for you are anything but. There is nothing wrong with 'a different way of needing to learn', nor of wanting a different way of life, and I can assure you that it is those who still haven't yet worked this one out who are the stupid ones. You learn to fly free and fly strong, in the knowledge that you are important and that you matter very much to many people. Learn to be proud of who you are and to understand that few people who are not on the autism circle would not be able to live their lives in the way you do, because it takes a mountain of courage to sometimes do the simplest of things, and there are very few people who have that kind of courage inside them. You do. My own daughter's life is also in your message there, as she feels exactly as you do, my Sweetheart. You are very far from alone, even though you so often feel that you are. I have the utmost respect and admiration for you, and again, I send you much love. Lizzie |
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29 Jan 10 - 06:29 AM (#2824342) Subject: RE: A Wish for Autism From: Emma B "if you have anything half way decent to add to this thread, about autism" I think the link that Ruth made to the well written piece by Jonathan Mitchell (a writer who suffers from a mild autism spectrum disorder) is an excellent 'dissection' of the post-mortem 'diagnosis' of autism made about people like Eistein and Jefferson. His conclusion about Norm Ledgin's book is that this kind speculation is not helpful. "It will only lower the self-esteem of those whose handicaps might prevent them from achieving what they want, let alone what the above-named individuals were able to do. It also places undue expectations on those who are expected to measure up. Worst of all, it provides fodder for the special educators, special education attorneys, ABA therapists etc. to legitimize their profits and to encourage the false hope and tears for toasted snow that so many parents of these children have." He believes sincerely that people who use historical figures like Einstein and Thomas Jefferson and Isaac Newton to claim autism is something great and should not be cured are attempting to 'present an argument for persons who take offense at the thought of eradicating autism to mitigate suffering' He is 'pro cure' and observes the 'strawman argument' put forward by some people ".....that cure and prevention are in reality code words for abortion and one offensive cartoon on the web page autistics.org implies this line of thinking. The only reason that genetic research is done on autism is the intent of deliberately finding a way of aborting autistic fetuses." But replies, "Of course it would never occur to them that someone might want to find a way to delete or insert certain genes to avoid the effects of a mutation that would cause the child to have grave harm throughout their life" Neurodiversity: Just Say No Certainly the overwhelming opinions posted on this thread, including those of parents of autistic children who have actually been diagnosed with the condition, would seem to agree with his wish to eradicate autism. |
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29 Jan 10 - 06:45 AM (#2824353) Subject: RE: A Wish for Autism From: Emma B Just in case all that got lost by the previous long winded post here is a link to the article that Ruth referred to in a previous post "Undiagnosing Gates, Jefferson and Einstein" - An article by Jonathan Mitchell and a link to his blog "We don't need no stinkin' neurodiversity" |
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29 Jan 10 - 08:41 AM (#2824447) Subject: RE: A Wish for Autism From: Jeri We don't allow personal attacks. At least not until they overwhelm a thread and it gets closed. I'm betting you don't want to be the reason for that. I'm going to try to moderate this thread and I hope that other Mods will too. PLEASE try to confine your remarks to the thread subject and not individuals. Thank you |
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29 Jan 10 - 09:43 AM (#2824506) Subject: RE: A Wish for Autism From: Backwoodsman This looks a lot better. Regarding the personal attacks, can everyone just ignore them please, now and going forward, and they'll eventually stop? As me old mam used to say, "If you don't pick at it, it'll heal up)! :-) |
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29 Jan 10 - 10:06 AM (#2824526) Subject: RE: A Wish for Autism From: Dave the Gnome Again - sounds good to me. The definition of such attacks may be variable but I will go along with whatever the moderators decide. For the record. I do not believe autism is a gift nor do I believe that many of the gifted people who had autisic spectrum disorders were gifed because of their condition. I would say they achieved what they did in spite of it and very good luck to them. I find it particularly heartless that a child with a cruel and incurable condition should be shown these amazing people as role models when it is known that tiny minority of all people, let alone those who are diferently abled, achieve any measure of greatness at all. I am all for positive encouragement and with such I like to believe that my children have all grown to achieve their own brand of greatness. That they have always done their best without harming anyone else on the way. That they always aspire to better things yet are not dissapointed if falling slightly short of the mark. My own personal goal is to learn something new every day and, so far, I have done it. One of these days the truth I learn will be the one that makes all the difference. Maybe it will be the genetic key to this issue. Who knows :-) Cheers DeG |
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29 Jan 10 - 10:30 AM (#2824541) Subject: RE: A Wish for Autism From: olddude While everyone wants to thump on each other, please remember one thing. It is about our kids not about you. The question is this, what have you or I done to help our kids with this terrible illness. Anger is the single common factor that I see and rightfully so ... Now take the anger and try to do something. I had been on the board of directors for one of the NFL greats who started a farm, hospital wing, and a host of research doctors. Now what I am trying to do is fund raising for specific families that are in deep financial need because of it. I never took any money for helping and making websites , so I usually end up getting signed footballs and Jersey's ect in the mail as gifts. I auctioned most of them off on ebay and raised over 5K for a specific family that needed it ... I not saying this to talk about what I did. I am saying this so that everyone can know that even us little folks can do something anything for a family that really could use some help. sometimes it is nothing more than, go shopping, I can watch the child, you need a break ... little things to help make a world of difference in a life |
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29 Jan 10 - 10:42 AM (#2824548) Subject: RE: A Wish for Autism From: Dave the Gnome Hey - not just the kids. olddude, remember that the condition affects people throughout their lives. I applaud your efforts but that level of commitment to something by which I am not directly affected is not for me, I'm afraid. If anyone wants to think the worse of me for that then fair enough but I feel I am already spread quite thin (wish that was a literal!) by countless other commitments. Keep up the good work but remember that everyone has their own unique set of priorities - None any higher or lower than our own. Cheers DeG |
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29 Jan 10 - 10:48 AM (#2824556) Subject: RE: A Wish for Autism From: olddude Dave I can completely respect what you said my friend. There are so many worthy causes out there that affect the lives of people. Autism is mine but I know lots of folks doing such for cancer, homeless and the list goes on an on ... one has to do what they can for a host of problems we are faced with in this life all of which are important. dan |
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29 Jan 10 - 02:31 PM (#2824782) Subject: RE: A Wish for Autism From: Lizzie Cornish 1 This is the most AMAZING video of a young woman talking about her early childhood, as an autistic child. In it she explains how she was face-blind, meaning-deaf, and how everyone looked the same, interchangeable faces. The interviewer talks about Helen Keller, and asks her if she had a 'Helen Keller Moment' when she was suddenly able to understand that people were trying to get in contact with her...and she did! OH, she DID! She had many of them! And when she tried out tinted lenses she realised that people's heads were actually joined to their bodies! She sees in pictures I think, so being taught words meant nothing, but when actions were put to the words she began to understand.. It's absolutely wonderful and so worth watching... Donna is also a talented artist and musican..and listen to how she explains her art, what it feels like! It's just as Ron Davies talks about...in the Gift of Dyslexia book.. "When music comes out through my fingers it feels a natural communication..." Donna Williams and her Helen Keller Moments....Youtube Donna will teach you all so very much about how it feels to be autistic. Absolutely bloody marvellous woman! I found her whilst watching 'Autism The Musical' and 'The Miracle Project' but I need to find more links for that, better ones..but Donna has just blown me away and put a huge smile on my face..and I hope she does for all of you too. |
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29 Jan 10 - 02:42 PM (#2824797) Subject: RE: A Wish for Autism From: robomatic Lizzie: Thanks to the NPR link for the audio for Temple Grandin's appearance. Sure hope they provide it. I taped it on my mp3 player but it's a bit fuzzy since I don't have good reception at work. Meanwhile, as for the Stephen Wiltshire link, it sure seems to bear out Temple Grandin's description of 'thinking in pictures'. The great inventor and engineer Nikola Tesla described his inventive process as one of visualizing his creations. He may have been a candidate for high functioning autist. |
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29 Jan 10 - 02:46 PM (#2824803) Subject: RE: A Wish for Autism From: Dave the Gnome Doesn't do much for me, I'm afraid, but as I said earlier I have too many other commitments to get involved in something that doesn't really concern me. I'm sure many will find it inspirational in some way though. Enjoy it. DeG |
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29 Jan 10 - 03:38 PM (#2824861) Subject: RE: A Wish for Autism From: Dave the Gnome I have just been re-reading Rose's moving post an have a genuine question to put to those who really know about these things. Please don't speculate, guess or waffle - Answers from peopel who know what they are talking about only, please. I am very close to two people who went though what seems to be exactly the same things. Bullied at school, terrified of college - one came home after the first morning, it was so bad! Suicidal tendancies. Difficulties relating to other people. Yet the idea of autism never entered into the equation. Depression, yes. Stress, yes. Severe self esteem issues, yes. What is it the dividing line between Rose's potential autism and the people who I know. It seems very fine and I am interested in what the distinction is, who makes it, why and whether it makes any difference. And Rose - Trust me on this because I know - It will get better even though you will take some knocks in the process. Don't worry about those - we all suffer them, it is not just you! And make sure you come back and let us know if it was autism or some other issue that affects you. Cheers Dave |
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29 Jan 10 - 04:32 PM (#2824907) Subject: RE: A Wish for Autism From: olddude Dave that is an outstanding question and one that even the specialist are still grasping at. I deal with severe cases in children and I am not an expert by any means just someone who cares and does what he can to help. The autism spectrum disorder has been expanded in recent years. Where the line is drawn I don't know. ADD, Panic Attack disorders, eating disorders can also be associated with autism.. sure but they are disorders in themselves. In children there are a number of early warnings signs for severe autism .. lack of eye contact, repetition, hearing issues (identifying sounds etc)... In high level autism (Aspergers) some of the signs most common are Signs and symptoms of Asperger's syndrome include: * Engaging in one-sided, long-winded conversations, without noticing if the listener is listening or trying to change the subject * Displaying unusual nonverbal communication, such as lack of eye contact, few facial expressions, or awkward body postures and gestures * Showing an intense obsession with one or two specific, narrow subjects, such as baseball statistics, train schedules, weather or snakes * Appearing not to understand, empathize with or be sensitive to others' feelings * Having a hard time "reading" other people or understanding humor * Speaking in a voice that is monotonous, rigid or unusually fast * Moving clumsily, with poor coordination * Having an odd posture or a rigid gait (taken from the aspergers site on the web) One thing that I have notice that seems to also be present across all of the autism spectrum is associated seizures) only a doctor with some brain scans and study can tell if it is a form of autism or one of the other problems that need help with. |
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30 Jan 10 - 07:47 AM (#2825345) Subject: RE: A Wish for Autism From: Dave the Gnome So, basicaly, it is a very complex procedure to diagnose autism. I wonder then if the apparant rise in the condition is really a rise or whether the diagnosis has become easier? Or, heaven forbid, some people are claiming autistic spectrum disorders, particularly adults with aspergers syndrome, becuase they have self disgnosed on the internet! Whatever it happens to be it can only be a good thing that the symptoms are being spotted, particularly in children, and then they can be treated accordingly. Cheers DeG |
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30 Jan 10 - 08:08 AM (#2825359) Subject: RE: A Wish for Autism From: Emma B "That the number of new autism diagnoses is dramatically increasing is generally accepted and not a point of debate. The historical rate of autism is about 4 per 10,000 and the more recent estimates are in the range of 15-20 per 10,000 (30-60 per 10,000 for all pervasive developmental disorders of which autism is one type)" (Rutter 2005) There are two basic hypotheses about what is causing this rise 1 That the rise in incidence is mostly or completely an artifact of increased surveillance and broadening of the definition of autism. 2 That the actual incidence of autism is rising due to an environmental cause "In the 1990's the diagnosis of autism was changed to autism spectrum disorder (ASD) – the new name reflecting the changing concept of autism to include a broader spectrum of symptoms, including much more subtle manifestations. In particular a diagnostic entity known as Aspergers syndrome, which is essentially a subtle manifestation of autism features, was classified as part of ASD. Any time you broaden a category the number of individuals that fit into that category is likely to increase. In addition to the broadening of the diagnosis, the social and medical network supporting ASD dramatically increased. There has been increased efforts at surveillance – scouring the community for hidden cases of autism. Further, parents have become much more accepting of the diagnosis, which may partly be due to the fact that is some states the label with facilitate access to special services. And clinicians have become more knowledgeable of ASD so are better able to make the diagnosis, even in subtle cases." All the research, while supporting the hypothesis that the rise in autism diagnoses is not due to a true increase in the incidence but rather is due to a broadening of the definition and increased surveillance, does not rule out a small genuine increase in the true incidence. A small real increase can be hiding in the data. There is no evidence upon which we can conclude, however, that true autism rates are increasing." Extract from a paper Published by Steven Novella under Neuroscience/Mental Health, Public Health, Vaccines in Science-based Medicine This evidence of course does not support the "autism epidemic" theory so loved by various organizations selling various (expensive) forms of treatment, from chelating to 'Creation Elixer' If there is a "stable incidence" of autism over recent decades, then this alone is powerful evidence against the vaccine hypothesis – and in fact removes the primary piece of evidence for a vaccine-autism connection. Just as a true 'epidemic increase' would have called out for an environmental factor causing autism, the lack of any increase argues strongly against any environment factor – especially when this is combined with the copious evidence for multiple genetic factors as the ultimate cause(s) of ASD. hope this helps Dave |
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30 Jan 10 - 08:56 AM (#2825390) Subject: RE: A Wish for Autism From: Emma B This may also be of interest...... The causes of autistic spectrum disorders (ASD) can be described in two ways: Primary ASD (also known as idiopathic ASD): no underlying medical condition can be found to explain the symptoms of ASD. Secondary ASD: there is an underlying medical condition that is thought to be responsible, or partially responsible, for the symptoms of ASD. 90% of cases of ASD are primary. . Leaving aside the 10% of secondary ASD researchers have studied four possible factors in the cause (or causes) of primary ASD: Genetic factors: certain genetic mutations may make a child more likely to develop an ASD. Environmental factors: during pregnancy, a child may be exposed to certain environmental factors that could increase the risk of developing an ASD. Psychological factors: people with ASD may think in certain ways that contribute towards their symptoms. Neurological factors: specific problems with the development of the brain and nervous system could contribute towards the symptoms of ASD. The possible psychological factors behind ASD, are based around a concept known as 'Theory of Mind' (TOM). "The theory of mind (ToM) impairment describes a difficulty someone would have with perspective taking. This is also sometimes referred to as 'mind-blindness'" Wiki This means that individuals with a ToM impairment would have a hard time seeing things from any other perspective than their own.* Individuals who experience a theory of mind deficit have difficulty determining the intentions of others, lack understanding of how their behaviour affects others. Additionally, one of the most important milestones in theory of mind development is gaining the ability to attribute 'false belief' This means an inability to recognize that others can have beliefs about the world that are wrong. - for example theories found on the internet or elsewhere are believed unconditionally without analysis. The results of research using false-belief tasks have been fairly consistent: most normally-developing children are unable to pass the tasks until around age four. (Notably, while most children, including those with Down's syndrome, are able to pass this "test", in one study, 80% of children diagnosed with autism were unable to do so.) However, In addition to autism, ToM deficits have also been observed in schizophrenics. *Moore, S. (2002). Asperger Syndrome and the Elementary School Experience. Shawnee Mission, KS: Autism Asperger Publishing Company |
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30 Jan 10 - 10:18 AM (#2825451) Subject: RE: A Wish for Autism From: olddude Environmental cause is one that I am thinking makes the most sense to me. Only because of this reason. Every child that I know that was tested was severely sensitive to heavy metals, many parents are doing chelation a controversial treatment to remove heavy metals from the child. However, the kids that did get the treatment improved quite a bit. It is not recommended and like I said is still very controversial but the parents I know reported better learning and behavior skills afterwords (certainly not cured by any means) It is also very very expensive 40K and not covered by any insurance and is dangerous unless done by a well trained DAN doc. |
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30 Jan 10 - 10:24 AM (#2825454) Subject: RE: A Wish for Autism From: olddude and DAN is not me, a DAN doc is one certified in autism and listed with the autism foundations |
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30 Jan 10 - 11:17 AM (#2825506) Subject: RE: A Wish for Autism From: Emma B What is a DAN doctor? "Defeat Autism Now (DAN!) is a project of the Autism Research Institute, founded in the 1960s by Dr. Bernard Rimland. DAN doctors are trained in the "DAN! Protocol," an approach to autism treatment which starts with the idea that autism is a biomedical disorder. Specifically, DAN! doctors feel that autism is a disorder caused by a combination of lowered immune response, external toxins from vaccines and other sources, and problems caused by certain foods." I'm very unhappy with chelation Dan - apart from the appalling financial cost lack of any there are no published peer reviews and studies and there IS a real medical cost Some parents of autistic children have, in the absence of a medical cure for their child's condition, very understandably turned to (often extremely expensive) alternative medicine and put their children at greater risk by avoiding crucial vaccinations or even causing direct injury with chelation. "Real chelation therapy which removes heavy metals from the body) is used medically, though rarely, because there is such a thing as real heavy metal contamination that is dangerous. It usually happens occupationally to people who work with heavy elements and are involved in accidents. Medical chelation takes years and is, at best, only partially successful; and carries plenty risk of its own. Kidney damage is among the most common side effects. Chelation therapy in popular 'alternative' medicine, however, brings only the risk and no possible benefit to the recipient. Brian Dunning, a computer scientist, has made a study of rationally examining pseudoscientific claims describing himself as a 'Skeptologist' He writes - "So how did we get to a point where wrongly informed parents are turning to chelation to treat their autistic children? It's not all that surprising. Many of the indications of autism first become apparent in children at approximately the same age as vaccinations are given. It naturally follows that some people will thus draw an (invalid) causal relationship. Because they happened about the same time, one must have caused the other. This is the same logic flaw that leads Oprah guests to proclaim their cancer was cured by some alternative therapy. Of those lucky few individuals whose cancer spontaneously went into remission, many were probably taking some random alternative therapy at the time; and because the remission occurred about the same time as the therapy, they assumed a causal relationship, when in fact none exists" No parent wants to see anything bad happen to their child. When it does, it's natural to seek some outside cause, someone or something to blame, something that can be attacked and fought back. Popular media has spread the notion that mercury from vaccination causes autism, and this makes a perfect scapegoat. Something to blame, something to fight, some way to protect the child. An easy answer. A clear answer. A chance. Something more tangible than the doctor's vague explanation of the complex causes of autism, and its tragic incurability. It's the perfect opiate for the tormented parent." From Mercury, Autism, and Chelation: A Recipe for Risk * Abubakar Tariq Nadama, a 5-year-old autistic child in Pennsylvania was treated by chelation therapy in 2005 which, his parents claim, resulted in his death He was being treated with EDTA, which is approved by the FDA for use only after blood tests confirm acute heavy-metal poisoning. The child's blood tests did not reveal any such poisoning. A study in 2007 by Williams, Hersh, Allard, and Sears published in Research in Autism Spectrum Disorders found no significant difference in the levels of mercury found in hair samples between autistic children and their non-autistic siblings. Siblings were used for this study to eliminate other environmental variables as factors. * A further look at the relationship between the preservative thimerosal found in some vaccines, the substance ethyl mercury which is naturally expelled from the body and methylmercury which will cause physiological damage but which is NOT present in thimerosal NB Denmark and Sweden eliminated thimerosal in the early 1990s without any observable reduction in the incidence of autism. Dunning observes that "It doesn't help that this misinformation is spread by celebrity activists like Robert Kennedy Jr., whose only medical experience comes from carefully making lines of cocaine with a razor blade. Kennedy wrote an article for Rolling Stone magazine in 2005 charging that the government knows that vaccines cause autism and is actively covering it up" |
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30 Jan 10 - 11:42 AM (#2825533) Subject: RE: A Wish for Autism From: olddude Emma I don't disagree with you and I don't recommend it. I just had a number of parents tell me it helped a lot. Now with the illness so complex help is a pretty generic term. Was the improvement from Chelation or simply just an improvement. You are right there are no studies to say it works and it can be dangerous. I don't recommend it |
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30 Jan 10 - 12:46 PM (#2825607) Subject: RE: A Wish for Autism From: Amergin Ok, first of all I suggest we all eat some shrooms and jump in the "magic circle". Now that part is done with, I tried hard to read this thread....but after each post of the thread's originator going on and on about all the amazing gifts autistic kids and adults have, and how everyone should hope to be autistic....and each post being 100 pages long (slight exaggeration there). I found I couldn't. I do say that ok, she has her heart in the right place, but she does not seem to know what she is talking about. As stated before autism is different from person to person. My experience is a young cousin of mine. Me and his mother (my aunt) have always been really close, more like brother and sister partly due to the closeness in our own ages. I adore this kid, he is very loving and friendly, though yes, he can get a bit annoying some times. For years he had a hard time struggling through his autism. The school system did not do anything for him, mainly because they were lazy to make accommodations for him. Finally, her family had to move to another town. There they got all the support they needed in the public school system. In the years they have lived in Sandpoint, he has blossomed. Yes, he is still a high functioning autistic, but he has friends and everyone likes him. All in a public school system. Recently, he has taken to the creative process as an outlet to reach beyond his own limitations. It has been working well for him. He likes art, and he has been painting and drawing. His high school art teacher chose two of his paintings for an art show. I am very proud of him. However, his creativity and his ability to express it, has no bearing on his autism. Especially, not in a family full of artists, musicians, singers, writers, artisans, and other such slaves of the creative muses. By the originator's reckoning, my whole family would be autistic, all members of this "magic circle", because we could not find ways to create without it. No, we would all be stuck in front of the TV and drinking in the latest episode of American Idol or CSI Miami, instead of doing something constructive. By her reckoning, the friends I have made in the artist community would all be hiding in their own minds, with no need of a proper education, because they are artists, they must be autistic. No once again, her brush is tainted by rosiness, and not the grittiness the real world shows to most people. |
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30 Jan 10 - 01:00 PM (#2825627) Subject: RE: A Wish for Autism From: Emma B Sad but cautionary story - an American MD and father of two autistic children talks about his experiences with 'alternative medicine' "I consider myself to be a very scientific person. While growing up, I was skeptical and inquiring and naturally gravitated to the sciences. My first brushes with pseudoscience and quackery in medical school left me convinced that "it could never happen to me." I was sure that my background and training would keep me from making the same mistake as "those people." I was wrong. A year or so after my son was diagnosed with autism, with no hope for cure in sight, I was feeling desperate for anything that might help him. My wife attended a conference about "biological treatments for autism." She came back extremely excited, having heard story after story about "hopeless" cases of autism "cured" by a variety of simple treatments. I was initially skeptical, but my desperation soon got the better of me. We started out with the simple therapies—vitamins and minerals—but soon moved on to the "hard stuff": the gluten- and casein-free diet, secretin, and chelation. Some of it seemed to work—for a while—and that just spurred us to try the next therapy on the horizon. I was "hooked" on hope, which is more addictive and dangerous than any "street" drug." Dr Laidler goes on to describe the expensive regimes he and his wife placed their faith in and concludes "Looking back on my experiences with "alternate" autism therapies, they seem almost unreal, like Alice's adventures in Wonderland. Utter nonsense treated like scientific data, people nodding in sage agreement with blatant contradictions, and theories made out of thin air and unrelated facts—and all of it happening happening right here and now, not in some book. Real people are being deceived and hurt, and there won't be a happy ending unless enough of us get together and write one. My personal journey through the looking glass has ended. I stepped into "alternative" medicine up to my neck and waded out again, poorer but wiser. I now realize that the thing the "alternative" practitioners are really selling is hope—usually false hope—and hope is a very seductive thing to those who have lost it. It is really not surprising that people will buy it even when their better judgment tells them not to do so. I suspect that the majority of the people who promote "unconventional" or "alternative" treatments for autism truly believe in what they sell. They deserve pity rather than scorn. Most of them will never realize what a disservice they provide to the very people they are trying to help. It is not my intent to make them "see the light." It is the autistic children (and adults), their parents, relatives and friends that I am trying to reach with this Web site, in the hope that they won't have to go through what my family has experienced. It is to them that I dedicate my efforts." Autism Watch Your Scientific Guide to Autism |
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30 Jan 10 - 03:10 PM (#2825740) Subject: RE: A Wish for Autism From: Lizzie Cornish 1 God, what a depressing story the 'scientific' one is... Here is something a little different...that brings Hope right back into the mainframe... The Miracle Project Autistic children "doing things that are really considered 'not doable' for children with autism...." The Miracle Project on Youtube "It's about all the things our kids CAN do.." "This Movie has been called a love story, and that's how I like to think of it.." Autism The Musical The producer of the film talking about how she joined her son's world until he was ready to merge into hers...and it was her son who led her start The Miracle Project. Tricia Regan - talking about her son, her inspiration. |
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30 Jan 10 - 03:15 PM (#2825747) Subject: RE: A Wish for Autism From: Lizzie Cornish 1 Tricia again..... "There's all kinds of myths about what autistic children can do. I plan to shatter those myths..." Autism The Musical - Part 5 There are other clips on that page, but I can't get them to work on my screen. I hope they work on yours... |
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31 Jan 10 - 07:01 AM (#2826264) Subject: RE: A Wish for Autism From: Dave the Gnome Very useful indeed, Emma and olddude. I can tick off my 'learnt something today' box and give it a gold star for being both interesting and informative. I think that it is just this sort of information that will help those having to face autism. It is facts and education like this that help to dispel fears and remove predujudices. Good call early in your post, Amerigin but you forgot to include inerminable links to inspiring projects. The thing I learned earlier in the thread is that I can add inspirational youtube videos to my list of things to avoid. I am not saying they are bad, I am sure they give great joy to a lot of people. They are just not my cup of tea, like jazz, opera and formula 1 racing. Cheers DeG |
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31 Jan 10 - 07:54 AM (#2826285) Subject: RE: A Wish for Autism From: Emma B On 21st of January I accepted the request to publish this on MY Facebook page "children with disabilities do not have a disease; children with disabilities are not looking for a cure but ACCEPTANCE........93% of people won't copy and paste this, WILL YOU be one of the 7% that does............... and make this your status for at least an hour." as I deeply believe in accepting all people irrespective of colour creed or disability. I have friends who are physically disabled including one who suffers from that 'invisible', and often misunderstood too, disability that is deafness The National Autistic Society defines autism as "a lifelong developmental disability" so it goes without saying that my desire for acceptance extends to all with this condition too But lets look at hope - preferably without needing another capital letter amongst so many! I have a sincere hope that autism, together with MS, Cystic Fibrosis etc may eventually be eradicated. While no cure is on the immediate horizon I heartily approve of anything that enables people with any disability to reach their full potential and have as a fulfilling life as possible. This includes anything as 'prosaic' as ensuring universal access for people who use wheelchairs, to the technology that enables my blind friend to use his computer to communicate with the world and the work that a friends daughter is doing in bringing drama and laughter to children with severe learning difficulties. What offends me is false hope! The expensive, considered by many experts to be blatant 'quackery' promises of a 'cure' to parents who, like Dr Laidler, are prepared to do and pay anything to help a much loved child. I have looked at 'The miracle Project' and am pleased that it's doing the kind of work that my friends daughter is achieving in the UK, undertaking drama therapy for children with learning disabilities including autism, and skilled caring teachers, like Mrs Duck, are including in their educational programmes However I also perceive the advertising that is part of the same 'miracle' "Diane Isaacs, Wyatt's Mom & Co-Founder of The Miracle Projects, is available for telephone consultation regarding nutritional and fitness aspects for special needs children. $180/hr" The Miracle Project Level 1, 4 Day Intensive Training--------------------------------$1200.00 You see I find this sort of thing aimed at vulnerable people very 'depressing' too. |
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31 Jan 10 - 10:14 AM (#2826368) Subject: RE: A Wish for Autism From: Emma B "God, what a depressing story the 'scientific' one is..." I make no apology for bringing some element of 'science' to the roseate glow of pseudoscience permeating some of the claims in this thread - including this one "Dyslexia is a gift, Emma" From: Lizzie Cornish 1 Date: 26 Jan 10 - 04:58 PM nor of quoting some skeptical views of unsubstantiated claims of 'cure' and 'healing' advertised widely in some of the sites like Autism Today.com which seem to exist solely to promote (and sell) the 'autism industry' To quote Carl Sagan, The Demon-Haunted World "If you're only skeptical, then no new ideas make it through to you. You never learn anything. You become a crotchety misanthrope convinced that nonsense is ruling the world. (There is, of course, much data to support you.) Since major discoveries at the borderlines of science are rare, experience will tend to confirm your grumpiness. But every now and then a new idea turns out to be on the mark, valid and wonderful. If you're too resolutely and uncompromisingly skeptical, you're going to miss (or resent) the transforming discoveries in science, and either way you will be obstructing understanding and progress. Mere skepticism is not enough. At the same time, science requires the most vigorous and uncompromising skepticism, because the vast majority of ideas are simply wrong, and the only way to winnow the wheat from the chaff is by critical experiment and analysis. If you're open to the point of gullibility and have not a microgram of skeptical sense to you, then you cannot distinguish the promising ideas from the worthless ones. Uncritically accepting every proffered notion, idea, and hypothesis is tantamount to knowing nothing. Ideas contradict one another; only through skeptical scrutiny can we decide among them. Some ideas really are better than others. The judicious mix of these two modes of thought is central to the success of science. Good scientists do both." |
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31 Jan 10 - 11:24 AM (#2826411) Subject: RE: A Wish for Autism From: Tig As someone closely associated with several adults who show autistic tendancies but have never been diagnosed, as well as some who have, one thing I CAN say is that they are all different. Some manage to cope well in the outside world, others have to have a lot of help for all of their lives - as do 'normal' people. At least it is now being recognised instead of being swept under the carpet/being sent to the asylum. One thing that has come out of this thread is the love, care and hope of all those involved. I hope those reading it who didn't know anything about it before now understand a bit better. Rose, you were extremely brave and taught us a lot. New ideas, medications and treatments are being brought out everyday. You never know - one day they may find the golden apple which REALLY helps everyone with the syndrome. Until then we must manage with what is available. So let's let this thread go where we started it... "My wish for 2010 is that people will understand autism is not a disease; people with autism are not looking for a cure but for ACCEPTANCE" |
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31 Jan 10 - 11:39 AM (#2826431) Subject: RE: A Wish for Autism From: Rasener Amen and 200 |
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31 Jan 10 - 12:00 PM (#2826447) Subject: RE: A Wish for Autism From: Dave the Gnome I am not really sure if the wish, phrased as it is, is any help at all, I'm afraid. To me it implies that as long as people accept autism there is no need to do continue seeking a cure. For that reason I will not put it on my face book page and would encourage others to think long and hard before doing so themselves. Remember to be careful what you wish for! While I fully understand that there is a small proportion of people happy with the condition, the vast majority with the condition, or caring for someone with it, see it as a curse rather than a blessing. Surely a better wish would be for acceptence of those with this, and many other conditions as mentioned by Emma, AND that these life altering and threatening issues will eventualy be resolved. Of am I asking for too much? How about posting "My wish for 2010 is that people will understand that disability is not a disease; people with disabilities are looking for acceptance while hoping that the all disabling conditions will eventualy be resolved." Cheers DeG |
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31 Jan 10 - 12:49 PM (#2826499) Subject: RE: A Wish for Autism From: olddude One last story just so folks can understand, about three years ago there was the little lady probably 110 lbs soak and wet, raising her teenage severely autistic son alone as most are. She would not tell the social worker how bad his rages would be. He was big strapping kid over 200 lbs. She would lock herself in the room when he would go into an autism rage. One day, in a rage he hit her with a lamp .. she died. Her sister found her body and he was standing over her saying mom wake up wake up ... she could not bear him going into a home and didn't tell anyone how bad it had become.. autism is no gift ... It is a curse that caused more suffering to families than anything else I know. |
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31 Jan 10 - 01:34 PM (#2826543) Subject: RE: A Wish for Autism From: Emma B Dan that is a desperately sad situation and an example of how greater understanding might help parents to accept appropiate help for their children. As a reply to David and perhaps on a little more hopeful level ... I've quoted in earlier posts 'pro cure' proponents like Jonathan Mitchell but, while finding a cure is, of course, always the long term goal it is also necessary to be realistic in recognizing that for many complex disorders it is a very long term goal Meanwhile it is my 'wish' to search for those realistic and tested science -based interventions which can be done to significantly improve outcome, and these types of interventions should not be neglected simply because they are not a "cure." Research priorities should reflect a reasonable balance between searching for a cure and improving outcomes in the meantime. A randomised controlled trial published online November 30, 2009 in 'Pediatrics' focused on early intervention with toddlers using a group of forty-eight children diagnosed with ASD between 18 and 30 months of age using the The Early Start Denver Model is a play-based approach to teaching sometimes referred to 'play school model' because its key activities took place as part of children's play activities using pre-school facilities. The study claimed to show that the children who received ESDM showed significant improvements in IQ, adaptive behaviour against a control group who showed greater delays in adaptive behaviour. Although this test does have statistical significance. it should be noted this is still a smallish study and replication to confirm the results would be welcome; nevertheless it is encouraging |
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31 Jan 10 - 01:38 PM (#2826549) Subject: RE: A Wish for Autism From: Lizzie Cornish 1 Below is taken from the prologue of John Elder Robison's wonderful book 'Look Me In The Eye - My Life with Asperger's' and a link to where you can get the book is at the bottom of this post... >>>>"Look me in the eye, young man!" I cannot tell you how many times I heard that shrill, whining refrain. It started about the time I got to first grade. I heard it from parents, relatives, teachers, principals, and all manner of other people. I heard it so often I began to expect to hear it. Sometimes it would be punctuated by a jab from a ruler or one of those rubber-tipped pointers teachers used in those days. The teachers would say "Look at me when I'm speaking to you!" I would squirm and continue looking at the floor, which would just make them madder. I would glance up at their hostile faces and feel squirmier and more uncomfortable and unable to form words and I would quickly look away........................... Everone thought they understood my behaviour. They thought it was simple. I was just no good. "Nobody trusts a man who won't look them in the eye!" "You look like a criminal!" "You're up to something, I know it!" Most of the time, I wasn't. I didn't know why they were getting agitated. I didn't even understand what looking someone in the eye meant. And yet, I felt ashamed, because people expected me to do it and I knew it, and yet, I didn't. So what was wrong with me? "Sociopath" and "psycho" were two of the most common diagnoses for my look and expression. I heard it all the time. "I've read about people like you. They have no expression because they have no feeling. Some of the worst murderers in history were sociopaths." I came to believe what people said about me, because so many said the same thing, and the realisation that I was defective, hurt. I became shyer, more withdrawn. I began to read about deviant personalities and wonder if I would one day "go bad" Would I grow up to be a killer? I had read that they were shifty and didn't look people in the eyes. I pondered it endlessly. I didn't attack people.I didn't start fires. I didn't torture animals. I had no desire to kill anyone. Yet. Maybe that would come later, though. I spent a lot of time wondering whether I would end up in prison. I read about them and determined that the federal ones were nicer. If I were ever incarcerated,I hoped for a medium-security federal prison, not a vicious state prison like Attica. I was well into my teenage years before I figured out that I wasn't a killer, or worse. By then, I knew I wasn't being shifty or evasive when I failed to meet someone's gaze, and I had started to wonder why so many adults equated that behaviour with shiftiness and evasiveness. Also, by then, I had met shifty and scummy people who DID look me in the eye, making me think the people who complained about me were hypocrites. To this day, I find visual input to be distracting. When I was younger, if I saw something interesting I might begin to watch it and stop speaking entirely. As a grown-up, I don't usually come to a complete stop, but I may still pause if something catches my eye. That's why I usually look somewhere neutral..at the ground or off into the distance...when I'm talking to someone. Because speaking while watching things has always been difficult for me; learning to drive a car and talk at the same time was a tough one, but I mastered it. And now I know it is perfectly natural for me not to look at someone when I talk. Those of us with Asperger's are just not comfortable doing it. In fact, I don't really understand why it's considered normal to stare at someone's eyeballs. It was a great relief to finally understand why I don't look people in the eye. If I had known this when I was younger, I might have been spared a lot of hurt................... ....Asperger's syndrome isn't all bad. It can bestow rare gifts. Some Aspergians have truly extraordinary natural insight into complex problems. An Aspergian child may grow up to be a brilliant engineer or scientist. Some may have perfect pitch and otherworldly musical abilities. Many have such exceptional verbal skills that some people refer to the condition as Little Professor Syndrome. But don't be misled, most Aspergian kids do not grow up to be college professors. Growing up can be rough..................... .....All my parents knew was that I was different from the other kids. Even as a toddler an observer would have thought that I was not quite right. I walked with a mechanical, robotic gait. I moved clumsily. My facial expressions were rigid, and I seldom smiled. Often I failed to respond to other people at all. I acted as if they weren't even there. Most of the time, I stayed alone, in my own little world, apart from my peers. I could be completely oblivious to my surroundings, totally absorbed in a pile of Tinkertoys. When I did interact with other kids, the interactions were usually awkward. I seldom met anyone's gaze. Also, I never sat still. I bobbed and weaved and bounced. But with all that movement, I could never catch a ball or do anything athletic. ..... ....If I were a child today, it is possible that an observer would pick up on those things and refer me for evaluation, thereby saving me from the worst of the experiences I describe in this book.. I was, as my brother said, raised without diagnosis. It was a lonely and painful way to grow up. Asperger's is not a disease. It's a way of being. There is no cure, nor is there a need for one. There is however, a need for knowledge, and adaptation on the part of Aspergian kids and their families and friends. I hope readers-especially those who are struggling to grow up or live with Asperger's-will see that the twists and turns and unconventional choices I made led to a pretty good life, and will learn from my story. It took a long time for me to get to this place, to learn who I am. My days of hiding in the corner or crawling under a rock are over. I am proud to be an Aspergian...." Excellent reviews on here..and it's a brilliant book. I'm in the middle of reading it at the moment.. 'Look Me In The Eye' by John Elder Robison (Amazon) John talking about his book - Youtube |
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31 Jan 10 - 01:49 PM (#2826557) Subject: RE: A Wish for Autism From: Dave the Gnome You know, I think I could well be on the 'autistic circle' myself. When I see a post of more that one screenful, purporting to be in some way inspirational I can only see only nonsensical words. Maybe if people posted links rather than the the whole passage it would help people with my condition. Sorry, I guess it is just me. I cannot see in words and meanings. Just pictures and URLs... DeG If the size of a copy/paste bothers you, send a PM to Joe. Whether it gets deleted or downsized depends on HIS monitor screen and he's got a big monitor. (At least he keeps telling people how big his is.) If it's just long post (not copied), there's no guideline for that. |
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31 Jan 10 - 01:54 PM (#2826562) Subject: RE: A Wish for Autism From: Lizzie Cornish 1 Dan, listen to what John says, 6 minutes or so in....where he himself talks about 'the gifts' he has...how it led him to work with Pink Floyd...how he 'sees' into music, into electronics. I fully appreciate the heartbreaking stories and the suffering that so many people endure each and every day. But there is another side as well. Kimmy was terrified of her son when he would fly into a rage, many years ago, but today, that young lad is in control. Yes, he may well have a situation in the future that gets out of hand, but heck, doesn't that happen to all of us at some point in our lives? People without autism also do terrible things, and more often than not, they do them quite deliberately. But those on the autism circle very rarely do them with the intention of causing harm...It's a momentary explosion, for whatever reason that may have caused it. We cannot rid this world of terrible happenings, no matter what they may be. Kimmy today would be lost without her Ben, he's moved on, with a great deal of help and support from his special school and is now looking forward to his life...but it was so damned hard in the beginning, so very hard for them... I have no idea how Ben's life will turn out. He was severly beaten up recently, just for being in the wrong place at the wrong time...cigarette burns, punches, kicks...the non autistic ones were after his mobile phone... My children had violence shown towards them by non autistic kids. Hannah, sweet gently autistic Hannah was hit in the face by non autistic kids... I hear what you're saying, I really do...and I know too, first hand, how terrible autism can be, but there is always hope...always. Ben is not a curse today. Neither are the many people who are able to find a way through it all, and there have been so many in the links I've provided. What is at the root of most of the suffering is the lack of knowledge, understanding and money. Everyone should know about autism...every single person. Teach young children about it at school. Go into the work place. Saturate the planet with information about it, but get the message out! And then these terrible cases may not happen, because everyone with an autistic child has help, empathy and compassion surrounding them... |
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31 Jan 10 - 02:05 PM (#2826570) Subject: RE: A Wish for Autism From: olddude Lizzie honey I hear what you are saying, in fairness I only dealt with the severe cases and for those with it that consider it I gift I am very very happy for them and wish them continued blessings because every case is indeed different. Just the parents that I know with autistic kids it is so far from a gift that it is a Greek tragedy to say the least. So I only can talk about my direct involvement and it has always been such a terrible situation that for me, I can never see it as a gift but for those folks that do, I am so very happy for them that they did not have to experience this stuff ... it breaks my heart so I do whatever I can to help. |
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31 Jan 10 - 02:08 PM (#2826573) Subject: RE: A Wish for Autism From: Wesley S "Teach young children about it at school." So Lizzie - I take it you've reversed your stand that autistic children should not go to mainstream school? That's good. It's a step in the right direction for you. Progress not perfection - that's my motto. |
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31 Jan 10 - 02:30 PM (#2826585) Subject: RE: A Wish for Autism From: olddude My daughter is expecting my first grandchild (a grand son). One of my very close friends just had a new baby boy, she is a big time model (beautiful girl) with a severely autistic son already. Right now she is using only cloth diapers, glass bottles, making her own baby food. She said since we do not know the cause and environmental factors may play a part I am going to error on the side of caution and do what they did in the 50s. I told my daughter she should do the very same thing. The worst you will end up with is a very healthy baby since you did not use processed baby food or plastics in anyway ... I think it is a good idea myself for any expecting mom or new mom .. What do we have to lose? yes it is a pain to do such but it can't hurt huh . |
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31 Jan 10 - 02:33 PM (#2826587) Subject: RE: A Wish for Autism From: Lizzie Cornish 1 I typed mine out, Dave. Took me an age to do. Typed it from the book I'm reading. I did it because I felt it was important and in the hope that some people reading this may be helped because of John's words and story. Dan, I know you care. I think you're a wonderful man for all that you do..and you have such a kind heart. I fully appreciate there are very different areas on the circle, and that whilst all struggle, some may struggle far more than others, needing constant care. |
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31 Jan 10 - 02:38 PM (#2826589) Subject: RE: A Wish for Autism From: Lizzie Cornish 1 I think she's very wise, Dan. The amount of chemicals that get into our children these days is terrifying. Going back to the old ways, when food was simple makes sense, as does not using plastic.. Congratulations by the way. xx |
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31 Jan 10 - 02:44 PM (#2826593) Subject: RE: A Wish for Autism From: Jeri Olddude, I think autism and the possibility of autism makes people feel helpless. We don't know what causes it, but we think there's something we should be able to do to prevent it. People will try almost anything. Cloth diapers, glass bottles and healthy home-made baby food can't possibly do any harm and may help. I think forgoing vaccinations for potentially lethal diseases because of disproven fears is dangerous. In the end, it may turn out that there's little or nothing we can do to prevent autism. But I believe there will be many ways to help people learn to cope. Even if the MAIN thing is for other people to accept that not everybody thinks like they do and it's not a bad thing. |
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31 Jan 10 - 02:47 PM (#2826595) Subject: RE: A Wish for Autism From: Mrs.Duck There is however, a need for knowledge, and adaptation on the part of Aspergian kids and their families and friends. John obviously understands what people have been saying here. He understood that he needed to learn how to make sense the world around him and helped to understand what he needed to do to be accepted. |
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31 Jan 10 - 02:50 PM (#2826597) Subject: RE: A Wish for Autism From: olddude I agree Jeri my dear friend, if it does nothing more than make a person feel like they are doing something anything, it is worth it as long as it is positive. I like the idea what my friend is doing since it cannot do anything but make a healthier baby in one respect anyway. I agree completely. Here is a quick PLUG ... I have an absolutely authentic autographed game ball by Brett Favre . It has a COA and is more than impressive. 200 bucks and the check is made out to a family with two disabled kids, one with autism and the other with cerebral polcy . anyway want to buy it??? PM me |
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31 Jan 10 - 02:52 PM (#2826601) Subject: RE: A Wish for Autism From: Lizzie Cornish 1 "So Lizzie - I take it you've reversed your stand that autistic children should not go to mainstream school? That's good. It's a step in the right direction for you. Progress not perfection - that's my motto." No child should be bullied, Wesley. You've read on here that it happens to children with autism a great deal. It shouldn't be happening. My wish is to protect them because I've seen the terrible damage and utter bewilderment this causes to very gentle people who are autistic. IF we had schools where children accepted everyone, where we had spent time teaching kindness, understanding and tolerance, then yes, mainstream school for ALL children would work. Sadly, we don't have that...and there is now more bullying in schools (despite the anti-bullying charters everywhere) than ever before. It is why it has been highlighted by the National Autistic Society. Again, not all autistic children would WANT to go to schools filled with thousands of faces they don't understand, Wesley. For many of those children mainstream schools may well be the worst possible place, because every day is fearful...and The Fear is already inside them to start with, even on a one to one basis... But if the child is happy, thriving and loving their school, then I've no problems at all. I would wish that for every single child, autistic or not, but I know it does not happen. We are a long way off from it happening in this country too. I've no idea if things are different in the USA. |
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02 Feb 10 - 02:32 PM (#2828339) Subject: RE: A Wish for Autism From: Lizzie Cornish 1 I was going to let this thread rest, but a dear friend pointed me to this wonderful lady, Rhonda Spellman, and her series of videos, which may help others. She wrote her book, 'The Journey Home from Autism' following the birth of her autistic son. "People with autism generally have senses that go far beyond what you and I understand. We see colours, they can *feel* colours..." "People with autism need to be taught in the way they learn and in the way they understand. This helps them to succeed. But we have to understand them first..." Rhonda Spellman, talking about her son and autism - Facebook video Rhonda again - Youtube Rhonda's Website |
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02 Feb 10 - 03:21 PM (#2828392) Subject: RE: A Wish for Autism From: Emma B Yes I read Rhonda's 'message' This is what I also read on her web site "I started giving my son the MaxGxl on December 17, 2008. He had been suffering from PANDAS* since September, 2007. We were looking into special schools and receiving Special Olympics ® invitations because he was doing so poorly… Within one week we saw subtle improvements. Within two weeks his focus was better. Within seven weeks his PANDAS was completely GONE! He went from 100% shadowed at school to 20% modified in three months! Am I convinced? You bet I am! Did I sign up to be a distributer? You'd better believe it! Just like Sam's Club (which I LOVE!) I pay a membership fee to get the discount AND I tell everyone I know about their great food. The difference: MaxGxl GIVES me a bonus check – just for sharing the news about the greatest thing that has ever happened to / for my son! If I could GIVE this to you I would! The good news: YOU can afford MaxGxl: $69.00 a month + tax and shipping! Honestly, unless you live in a bubble completely devoid of all toxins, YOU can't afford NOT to take MaxGxl! *** Even more good news: YOU can become an associate and earn money for helping others – just like me! I'd LOVE to have YOU on my team!!! " I'm sorry but I didn't put any of the books in the 'shopping cart' on her web page either. I don't normally quote Daily Mail articles but here is one that does seem to resemble the traditions of investigative journalism "The great autism rip-off" ... How a huge industry feeds on parents desperate to cure their children "to discover exactly what is being offered to parents, I visited five practitioners of 'biomedical' autism therapies posing as a parent of a three-year-old boy diagnosed with ASD. Although the practitioners stopped short of saying they could 'cure' autism, each described to me instances of young patients who had been transformed by their treatments and were able to lead totally normal lives and participate fully in mainstream education............... .......At the end of the investigation I speak to Richard Mills, a director of Research Autism, a coalition of parents, those with autism, academics and medical experts, set up by the National Autistic Society (NAS) and the Institute of Child Health to study new treatments for autism. 'Your experiences are not uncommon,' he says. 'There is no evidence that any of these treatments work. There is evidence that some do not work, and even could do harm.' Mills, who has worked in the field of autism research for the past 30 years, describes the helplessness and despair parents feel when trying one unsuccessful treatment after another. 'Parents often tell us they weren't made aware of possible negative effects and many spend thousands, running up bills on credit cards, on treatments that don't work. 'Many of the practitioners who sell these treatments are no better than snake-oil salesmen. This kind of hard-sell approach is completely immoral. Lack of regulation means anyone can set themselves up and claim to be able to successfully treat autism, without any proof that it's actually possible,' he says. Read more: http://www.dailymail.co.uk/health/article-1023351/The-great-autism-rip---How-huge-industry-feeds-parents-desperate-cure-children.html#ixzz0ePYw7l7X *PANDAS, is an abbreviation for Pediatric Autoimmune Neuropsychiatric Disorders Associated with Streptococcal Infections. The term is used to describe a subset of children who have Obsessive Compulsive Disorder (OCD) and/or tic disorders such as Tourette's Syndrome, and in whom symptoms worsen following strep. infections such as "Strep throat" and Scarlet Fever. My 'wish' for autism - a realistic look at the hidden selling of unproved expensive 'treatments' behind these emotive videos *** Advert for the pyramid selling tactics of MaxGXL on the net "I Am NOT Kidding… I Have Made Millions In This Industry Because Of The Secrets I Am About To Share With You On Generating Leads, I Suggest You Listen Closely If You Want To Do The SAME..." it appears - 'no experience is mnecessary' "Everyone is entitled to their own opinion, but not their own facts." - Daniel Patrick Moynihan |
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02 Feb 10 - 04:13 PM (#2828454) Subject: RE: A Wish for Autism From: Lizzie Cornish 1 Hmmmmm...well, it seems Rhonda's site is not what I thought it was, so let's not go there with what she has to say. I wil always put my hand up and apologise, Emma. You found something I hadn't. Well done. I don't know though, sometimes it seems you're determined to try and prove that anyone who has anything half way inspirational, or hopeful, to do with, or say about, autism is purely in it for the wrong reasons. The Miracle Project bit you found....how do you know that money they charge for the courses is not directed straight back into the project itself? It seems a damn wonderful project to me...and 'Autism The Musical' seems likewise, if you look at those clips. Are you saying that all the inspirational links I've put into this thread are simply about people making money? I mean, the chap whose book I'm reading at the moment, about his life with Asperger's, John Elder Robison, has made money from *me* buying his book. But hell, I've learned an awful lot about Aspergers. I don't resent my money finding it's way to him in the slightest. I am just really pleased that he has passed his experiences out to others to learn from. Are you saying that he should give his book away for free? Why should he? No, I don't agree with people offering 'cures' for autism, nor do I agree with an industry opening up around it, but there are 'cure' industries surrounding almost everything these days, sadly, no matter how emotive or distressing some things are. |
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02 Feb 10 - 04:46 PM (#2828471) Subject: RE: A Wish for Autism From: Dave the Gnome There is nothing further from my mind than trying to prove anything inspirational about autism is wrong. I am pretty sure Emma is the same but is quite capable of saying so herself. A balanced view is not necessarily a negative one and a healthy dose of cynicism goes a long way towards making sure the truth is found rather than a hoped for dream that may not be realised. There are many people of all sorts of abilities who are inspirational to us all but to pretend that all those who suffer from ASDs have some mysterious gift is just plain wrong. Yes, there are those who have used their different abilities to great advantage but for every rain man there are thousands who will not make it. Rather than holding up icons and telling people how wonderful their 'gift' is, would it not help acceptance a great deal more by telling them that they are as normal as everyone else? They can achieve greatness but chances are they will just lead an anonymous but happy life like most of us! As to miracle cures and their like. There is an old saying. If it seems too good to be true than chances are, it isn't true. May come across as raining on a parade but better that than hurting countless people. Cheers DeG |
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02 Feb 10 - 04:48 PM (#2828474) Subject: RE: A Wish for Autism From: Emma B Amen David - you have said it all - Thank you. |
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02 Feb 10 - 04:57 PM (#2828479) Subject: RE: A Wish for Autism From: Folkiedave Hmmmmm...well, it seems Rhonda's site is not what I thought it was, so let's not go there with what she has to say. I wil always put my hand up and apologise, That isn't the point Lizzie. First of all you don't. Remember the post about the church in Saudi Arabia? Five minutes on the internet and you could have found out the truth. Secondly it is your responsibility to check what your link says what you say it says. I have pointed out on other occasions when it doesn't. but there are 'cure' industries surrounding almost everything these days, sadly, no matter how emotive or distressing some things are. And that is why you have to be careful what you post. |
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02 Feb 10 - 06:32 PM (#2828558) Subject: RE: A Wish for Autism From: robomatic Today's New York Times has an AP article that The Lancet has "retracted a flawed study linking the measles, mumps and rubella vaccine to autism and bowel diesease." |
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03 Feb 10 - 10:04 AM (#2828775) Subject: RE: A Wish for Autism From: Emma B I am a self diagnosed cynic - defined on one web site as "an idealist whose rose-colored glasses have been removed, snapped in two and stomped into the ground, immediately improving his vision." Yes, cynics are still idealists under their scarred hides Historically cynics were students of a now-obscure philosopher named Antisthenes, who in turn was a student of the illustrious Socrates who believed that virtue was the greatest good and would challenge folks to good-natured debates and let their own foolishness trip them up. Because of my work, I do have some limited experience of autism and the effects it can have on family life. I have encountered one 'savant' who could play chess like a grand master but nevertheless was unable to do even the most basic tasks for himself. The Autism 'Epidemic' and Industry I have seen the growth of the 'autism industry' spread from its germination in the US to this country with some alarm as I am well aware of the desperate need of some parents I have known to find any cause of, or treatment for, their much loved children with autism. I have also been disturbed by the ideological, unscientific crusade against childhood vaccines such as the one led by self-styled 'Warrior Moms' like celebrity Jenny McCarthy as I myself only just survived a measles epidemic as a young child and my best friend did not. Such celebrities are loved by the media (Oprah has signed a deal to sponsor McCarthy in her very own talk show) because of the 'inspirational' warm glow they engender - her son Evan "is no longer in the world of autism." He is, she says, "recovered." What people who promote this seem blissfully obvious to, or uncaring of, is the mixture of guilt and anger they 'inspire' in many parents of autistic children. As one mother has written in "The False Prophets of Autism" N Y Times "I've heard McCarthy say on national TV, "Evan is my science." I'm sorry, one little boy is not "science." Warm and fuzzy anecdotes don't do it for me. Give me hard science any day, with its double blind studies and rigorous peer review. It's time for the media to stop giving airtime to celebrities with no medical credentials who peddle unrealistic hopes to families dealing with a devastating diagnosis." Self Diagnosis Another disturbing feature is the increasing tendency for adults to self diagnose with Aspergers This has reached such bizarre levels that one web based support group has commented "there is no doubt some of these people claim to have Aspergers as its the new emo – in other words a way to claim to be different than everyone else. Many of the people on the Autism and Asperger support websites are there legitimately seeking support for a diagnosed condition, this used to be a really useful tool for seeking support but as of late its been all but helpful. If you look on support websites such as Wrongplanet you notice what was intended as a support website is all but a support website, people with a legitimate and diagnosed condition are often trolled and harassed by those who claim to be self-diagnosed." The Genius Myth While self diagnosis in itself is a inaccurate and possibly dangerous thing (doctors never recommend self diagnosing people for one reason – people are not good at evaluating their own conditions) what is even more perturbing is the fashion (originating from Norm Ledgin's fanciful, and much publicized, post mortem 'diagnosis' of Thomas Jefferson as autistic) of attributing an autistic diagnosis to famous people and geniuses of the past and the extrapolation of this fallacy to the insistence that autism is therefore in some way a 'gift' Again this has caused feelings of resentment in some people who suffer from the condition "In addition to giving parents hope for their child's future, it could be used to make an autistic person feel better about himself Of course there is the flip-side that it could induce anger and bitterness to the autist who considers himself far less successful than many neurotypicals. I fall into this last category, therefore, I feel that it is of utmost importance that these diagnoses be dissected. I have attempted to do so in this essay" Undiagnosing Gates, Jefferson and Einstein An article by Jonathan Mitchell I have hoped, by dissent, to open up discussion on all the highly emotive language and opinions presented as facts you have bludgeoned us with Lizzie, in itself a form of bullying. I have NOT wished to present a negative approach to autism; I have commented on the real success stories of early educational interventions and the value of teachers in mainstream and special education In the UK, as the National Autistic Society has reported - "The Government has developed an exciting new resource to help schools support children with autism better. The Autism Inclusion Development Programme (IDP) is a series of modules available online and on DVD to help education staff to understand autism and work better with children on the autism spectrum." including one for early years settings such as nurseries. I apologize for the length of this post but much has been covered by this thread. To all the parents, not forgetting Rose, who have contributed may I send my respect 'Em' |
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03 Feb 10 - 10:20 AM (#2828801) Subject: RE: A Wish for Autism From: Dave the Gnome Well put, Em. As I said there are some long posts I cannot get through as there seems to be no logic or structure to the points. This was not of that type - I maust have a different way of taking in information than some;-) Cheers DeG |
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03 Feb 10 - 11:34 AM (#2828877) Subject: RE: A Wish for Autism From: Lizzie Cornish 1 Parents are not against having these vaccines, Emma. They are against having them *all at the same time* It ain't rocket science. Many parents even travel to France and further afield to get single dose vaccines for their children, at a big financial cost, because they care about their children, not the other way around. Half full, half empty. You live your life the way fits you best, I guess. Today BBC Breakfast News did a big feature on Alzheimer's. They mentioned how devastating it was, how it affected millions, how it will affect millions of us in the future..... And my mind got a little enraged....because many people are starting out their lives trapped inside their own bodies, and no-one's giving a damn out there in the media.. This is not to belittle Alzheimers in any way, but we HAVE to spread the word about Autism in the same way. To not, is criminal. So, if you'd like to write to the BBC Breakfast News Team, as I did this morning, asking that they do a big feature on Autism, giving it as much coverage as they can, then, please write to them at this email address: bbcbreakfast@bbc.co.uk BBCBreakfast News Website The more people who write, the bigger the impact will be. Thank you. |
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03 Feb 10 - 12:27 PM (#2828923) Subject: RE: A Wish for Autism From: Emma B "Half full, half empty. You live your life the way fits you best, I guess" Please don't slyly insinuate my life is half full Lizzie - I don't need to spend it all on internet rants and crusades on subjects I know little about. As for media coverage - a double edged sword! "This disconnect between the scientific community and the popular media is starkly laid out in a study published in the February issue of Nature Reviews Neuroscience by researchers at the Stanford University School of Medicine. The researchers found that while 41 percent of research funding and published scientific papers on autism dealt with brain and behavior research, only 11 percent of newspaper stories in the United States, United Kingdom and Canada dealt with those issues. Instead, 48 percent of the media coverage dealt with environmental causes of autism, particularly the childhood MMR vaccine for measles, mumps and rubella that was once linked with autism in a widely refuted study. Only 13 percent of published research was about environmental triggers of autism." Amy Adams Stanford University Medical Center 2007 Jeff Stier, an associate director of the American Council on Science and Health wrote about the ABC drama series "Eli Stone" (described as, 'a crusading lawyer who has "visions" about how he can improve the world' as one episode perpetuated an 'insidious myth' that the thimerosal preservative formerly used in vaccines causes autism. A jury in the show concludes the opposite of what just about everyone in the real world should now know: that the supposed vaccine-autism link is based on discredited studies and 'wacky activist assertions.' An American mother of three children diagnosed with autism has noted that the media "tends to focus either on tragedy or feel good stories." As if to illustrate this the BBC have just bought the rights to a documentary about "The Horse Boy: A Father's Miraculous Journey to Heal His Son" "The final scenes of Rowan riding Betsy on his own, enjoying the freedom and independence that once seemed an impossible dream, reduce us all to tears" - Telegraph TV review |
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03 Feb 10 - 01:14 PM (#2828974) Subject: RE: A Wish for Autism From: Emma B and just a btw for clarification "Today BBC Breakfast News did a big feature on Alzheimer's" Well it is a news programme! Todays news headlines included the publication of a report by the Health Economics Research Centre at the University of Oxford. This report, which was commisioned by the Alzheimers Research Trust in 2009, was to look at the economic cost of dementia to the UK and the country's investment in research to find new treatments, preventions and cures. The Oxford's team findings are described by the ART as 'astonishing' and are certainly newsworthy IMO The full report can be found here |
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03 Feb 10 - 01:47 PM (#2829005) Subject: RE: A Wish for Autism From: Lizzie Cornish 1 I started a thread on The Horse Boy, Emma. Perhaps you missed it. "Please don't slyly insinuate my life is half full Lizzie" I was talking about everyone, actually, stating that there is a choice to be made and we are the ones who make that choice. And for your information, I don't do 'sly'. My life will always be half full. I've been in the half empty place, and I can assure you that half full is always better. There is always a silver lining to everything, no matter how grim it may seem at the time. To give up on Hope, is to give up on Life. I have known what it's like to lose a child, without ever being able to hold that child in my arms...and it leaves a space so empty, so hollow, so bleak that it seems almost unfillable. It is why, when offered tests on my 'soon to be born son' I refused them all, because I didn't care if I was about to be given a 'burden' for I'd already made up my mind to accept, totally....and ensure that joy was around me. Even if it seemed hopeless, I would do it, somehow. I was blessed with my son, with my daughter too...and even though they too have been to bleak places in their time, I'd not have changed one single moment of my life, no matter how grim it has been at times. To Live, is to Hope. To Hope, is to Live. "No pessimist ever discovered the secret of the stars or sailed an uncharted land, or opened a new doorway for the human spirit." Helen Keller (1880 - 1968) Every child is worth fighting for. Every child is worth loving. Amazing footage of Annie Sullivan talking to, and about, Helen Keller Without Annie fighting for her, Helen would have spent her 88 years in a dark, silent, thought-less prison, abandoned. Instead, Helen lit up the world with her vast intelligence and compassion. And here is a link to Donna Williams...literally a link to her, as she is responding to comments on this Youtube page...so if there is anything you would like to ask, I guess..just ask her. Donna Williams - Youtube (PS: The previous link I put in to Donna, goes to The Miracle Project by mistake. I can't seem to get the Google Video page to link to the right one, which is sooo annoying as it's very informative and interesting, but I'll post it here if I can figure how the link...) |
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03 Feb 10 - 02:50 PM (#2829078) Subject: RE: A Wish for Autism From: Emma B "Scotopic sensitivity syndrome, also known as Irlen Syndrome and Visual Stress Syndrome, approximating in some ways to Meares Irlen syndrome, and 'Visual Stress', refers to visual perceptual disorder(s) affecting primarily reading and writing based activities. Its existence is not recognized by some major medical organizations including the American Academy of Pediatrics, the American Academy of Ophthalmology, and the American Optometric Association" There have been claims that tinted glasses can aid in dyslexia but Donna Williams, in her book 'Like Colour To The Blind' writes about her experience of tinted lenses (Irlen filters) claiming they enabled her to overcome face blindness, inability to learn to read facial expression and body language and the social consequences of these impairments. On her web site she states she stocks these as 'an autism test range of tinted lenses' at $179.95 and 'encourage(s) children and adults to self test and rate for themselves which tints, if any they find most effective' I already have posted that I'm unhappy about the promotion and selling of unsubstantiated products (most Irlen lenses have not received scientific evaluation)* in this way but you continue to post these 'inspirational' links which is, of course, your 'right' as it is mine to point this out again Lizzie on Jan 26th you addressed me directly with the comment "Each to their own. I have two children on the circle, dear and very talented friends on the circle, relatives on the circle, and I know, only too well, that many of them have amazing gifts. Half empty Half full The choice is yours." Now I don't know about you but when I use the second person singular when replying to someone, as you did again at 11.34, it normally in mine, and most people's, understanding does not refer to 'everyone'. *The association of scotopic sensitivity syndrome and dyslexia has been challenged by many authors in both the optometric and ophthalmologic communities. but recent scientific evidence suggests a weak association. Tinted lenses and dyslexics—a controlled study. SPELD (S.A.) Tinted Lenses Study Group. Gole GA, Dibden SN, Pearson CC, Pidgeon KJ, Mann JW, Rice D, Rooney KF, Hannell G, Fitzgerald BA, Kortman JY, et al. SPELD Incorporated, Kensington, South Australia. "We have carried out a randomised prospective controlled trial of the effect of tinted lenses on the reading ability of 24 non-asthmatic dyslexic children aged between nine and twelve years. Reading ability was assessed using the Neale Analysis of Reading. After one school term, there was no significant difference in the change in reading age between treatment and control groups. After two school terms (approximately six months), only 11 children (44%) were still wearing the glasses. Of 381 suitable subjects for entry into the study, 208 were excluded because of a diagnosis of asthma (to avoid effects of medication on cerebral function). As a result, we may have excluded subjects who would have responded favourably to tinted lenses |
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03 Feb 10 - 06:46 PM (#2829324) Subject: RE: A Wish for Autism From: Lizzie Cornish 1 I'm sorry, Emma, but get real here. A woman says she was helped with tinted lenses. These are known to help people with dyslexia, as are differently tinted sheets, spread over books etc...They've been known about for years, and there are loads of people who've been helped with them. Autism brings with it an over-stimulation of all the senses, vision included. My friend who is dyspraxic and who shows many symptoms on the autism circle was prescribed coloured lenses for her light-sensitivity. She finds them very helpful. She used to have panic attacks in bright lights, sometimes causing her to almost faint...so she went to the optician....and.......lo and behold, that's what he prescribed for her. If Donna knows they work and has had very positive effects from them, then why the heck shouldn't she pass that fact on to others and sell them from her site? And if you read her comments on this video, you'll see that she's now changed to another type of lens...If it helps her, all well and good.. Donna's video on the lenses... And listen to this young lad....It makes perfect sense to me how Donna was helped with these lenses..especially when he talks about the problems that some folks have with 'depth perception', which must make life pretty weird and dizzy at times... Irlens Syndrome - A Teenager's viewpoint And I don't do 'second person singular' stuff...I just write, Emma, in the way I do, so it's no good applying your rules to my writing, 'cos I don't have rules. That's not being rude, it's just telling you, in the hope that you'll relax a little more about my words. |
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03 Feb 10 - 06:50 PM (#2829328) Subject: RE: A Wish for Autism From: Lizzie Cornish 1 And...I seem to recall Dr. Temple Grandin talking about fluorescent lights and the trouble they cause to light sensitive people, especially those with autism...on computers and/or TVs. She said that laptops are the best type of screen to look at. It's on that lecture video I linked to ages back.. |
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04 Feb 10 - 12:53 PM (#2829967) Subject: RE: A Wish for Autism From: Mrs.Duck I am familiar with the use of coloured glasses and overlays to help dyslexia and can see how that might also support some people with asd but I am very sceptical about anyone selling them. It takes a long and detailed evaluation to decide which colours and types of overlay suit each person and not everyone will find them helpful. It is certainly not something that anyone should self diagnose or prescribe. |
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04 Feb 10 - 01:34 PM (#2829994) Subject: RE: A Wish for Autism From: Lizzie Cornish 1 Well, I buy reading glasses from shops that aren't opticians...so I guess I'm self-diagnosing my optical refraction, along with millions of other people... If the letters jumped around, as they do for my brother, I'd jolly well have a go at trying different coloured lenses too... And, if I were light sensitive, and desperately so, I'd also have a go at trying on different coloured lenses, without waiting for an 'expert' to tell me which was right for me....er...'cos I'd know as soon as I put the lenses on which ones helped, or not. Donna said it helped her with her depth of vision, which was very interesting, as I'd assume she was finally able to focus far more clearly.. I watched a strange programme last night, called 'Embarrassing Bodies' (stay with me on this one)...and after they HAD embarrassed me with some of the ailments they diagnosed and treated, they had a short bit on autism. The man who was diagnosed with it explained how he had trouble reading faces, understanding jokes etc..and his children were pulling his leg about it...He also said that he couldn't follow TV programmes or films, just didn't 'get them' at all. So, they did an experiment. They took the man with autism and one of the doctors, then wired them up, visually, so that the computer could track where their eyes were focussing at all times. Then, they played them a short TV sketch, about a man having an affair, and his wife coming home whilst he was there with his mistress. There was loads of body language and many facial expressions in there... Afterwards, they played it back through the computer. The doctor had watched it correctly, and understood it fully, as his eyes were focussing on the head, face and eyes of the actors, for the most part...but the autistic chap's eyes didn't go above the neck. He was totally confused as to what the sketch was about. His eyes pretty much stayed away from the actors entirely, focussing on the furniture...only very occasionally going to their bodies. It was interesting, for all concerned... |
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06 Feb 10 - 10:46 AM (#2831389) Subject: RE: A Wish for Autism From: Wesley S For those of us in America that are interested in Temple Grandon - HBO is going to play their Biopic about her starting tonight. Feb 6th. Clair Danes is playing Temple. HBO Preview |
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06 Feb 10 - 11:49 AM (#2831428) Subject: RE: A Wish for Autism From: Lizzie Cornish 1 Thanks for that, Wesley. I meant to put it on last night, but I forgot. I found it on Youtube yesterday, sent it to a friend...and Mudcat was down this morning over here..I so wish we could watch it here in the UK. Hope you enjoy it. |
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03 Mar 10 - 04:15 AM (#2854736) Subject: RE: A Wish for Autism From: Lizzie Cornish 1 BBC Breakfast News today covered the Government's new Autism Strategy. Below is taken from today's Guardian, here: "Adults with autism are set to get the same access to jobs, education and good health care as everybody else following a pledge from government today in its first autism strategy for England. Care services minister Phil Hope says the strategy is not about creating a raft of new services, but about reorganising those that exist to help people with autism better. "The success of the strategy will depend upon those existing services changing to recognise and respond to the needs of people with autism," he says. Although a modest amount of new money – in the shape of £500,000 to train frontline professionals to better recognise and understand autism and its needs – is being announced, the strategy is expected to be implemented without substantial extra finance. The first year's delivery plan will be published later this month. Simon Baron-Cohen, director of the Autism Research Centre at Cambridge University, warmly welcomes the document. "Encouragingly, it pinpoints achievable solutions that could radically improve the lives of people with autism," he says. "This is an important new development, following on the heels of the historic new Autism Act." But he suggests that additional finance might be required. "The hope is that the autism strategy will lead to the identification of desperately needed funding to meet the cost of these essential provisions," he says. Around one in 100 adults have a condition somewhere on the autistic spectrum, according to the recent Adult Psychiatric Morbidity Survey. "By applying the one in 100 figure, we estimate that over 300,000 adults in England have autism," says the report. "Together with their families, they make up over 1 million people whose lives are touched by autism every day." The report defines autism as "a lifelong condition that affects how a person communicates with, and relates to, other people. It also affects how a person makes sense of the world around them." Those affected have problems communicating and interacting, and find it hard to imagine other people's feelings and predict their behaviour. For the purposes of the strategy, the Department of Health includes Asperger's syndrome, which can affect people who are very articulate and talented but still suffer from considerable communication difficulties. The Autism Act 2009 was passed in response to increasing evidence that people with autism suffer social and economic exclusion. Only 15% of adults have jobs, they have poorer health than the rest of the population, and 49% of adults live with and are dependent on their parents. The launch of the strategy is a requirement of the act. "Adults with autism spectrum conditions have been invisible, marginalised, and left to suffer in a system they cannot negotiate unaided," says Baron-Cohen. Among the aims of the strategy are to increase awareness and understanding of autism among frontline public services staff. Too often, people with autism are thought to be rude and difficult by the police, or they avoid going to see a GP because of crowds in the waiting rooms. Employment advisers may recommend only certain types of job, and some social workers assume that all people with autism have a learning disability. "Although most people have heard of autism, they do not actually understand the whole spectrum and how it affects people differently," said one contributor to the strategy's consultation process. "Most will cite Rain Man and assume that all autistic people are the same as the character in the film." The National Institute for Healthcare and Clinical Excellence is developing diagnosis guidelines, and the strategy aims to ensure that support and services follow diagnosis, and to identify and promote service models that have been proved to make a positive difference. The strategy will allow adults with autism, and their families, to have more control over where they live – recognising sensitivities to, for instance, harsh lighting in a home, and offering support to those who want to live independently. A National Autism Programme Board will be set up to lead the public service changes. The National Autistic Society believes it is critical that specialist autism teams should be set up in every local area, responsible for providing a range of services, including diagnosis and support, but the strategy appears to leave it up to each area to develop its own commissioning plan. "What really matters is delivery on the ground," says chief executive Mark Lever. "We will look to see how we can work with local authorities to ensure that the words deliver real change." |
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20 Jan 12 - 10:46 AM (#3293370) Subject: RE: A Wish for Autism From: GUEST,Lizzie Cornish A while back in this thread I put in a link to the story of a young girl who had found her way out of her autistic body, due to a computer. This is now on Youtube and here IS Carly, surrounded by her family and letting the world see into the so often Silent World of Autism. ] I'm putting it here as I know there are a few people on Mudcat for whom this film may open some doors. I hope it helps, if that is the case. Carly's Story - Youtube With love Lizzie |
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20 Jan 12 - 04:04 PM (#3293562) Subject: RE: A Wish for Autism From: GUEST,olddude Many school systems honey are now giving the kids Ipads. There are a lot of apps now to help autistic kids that run on the Ipad. |
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20 Jan 12 - 05:58 PM (#3293607) Subject: RE: A Wish for Autism From: Jack Campin First post in this thread: ...autism is not a disease; people with autism are not looking for a cure but for ACCEPTANCE... Just now: ...a young girl who had found her way out of her autistic body... There seem to be two completely different people writing there. I go more for the second one. The world does not need autism, and anything that gets rid of it is a good thing. |
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07 Sep 15 - 09:23 AM (#3736037) Subject: RE: A Wish for Autism From: GUEST,Rose I know this has taken a really long time, but I finally have an update! Last month, me and my Mum attended an assessment session near where we live - 18 months after finally getting the appointment. After an in-depth interview with a clinical psychologist, I have been diagnosed with Aspergers. I'm now waiting for the report from the psychologist, which should arrive some time in the next few weeks. He said that he's going to put "Aspergers/Autistic Spectrum Disorder" on it as the DSM changed to lump Aspergers in with ASD instead of having separate entries. This was an enormous relief! I just wish it hadn't taken so long. |
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07 Sep 15 - 04:48 PM (#3736092) Subject: RE: A Wish for Autism From: Ebbie Congratulations on finally getting an answer, Rose. And now on to a good life! |
