A Wish for Autism

Subject: RE: A Wish for Autism
From: Wesley S
Date: 23 Jan 10 - 08:56 PM

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.

Subject: RE: A Wish for Autism
From: Donuel
Date: 23 Jan 10 - 11:49 PM

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.

Subject: RE: A Wish for Autism
From: Lizzie Cornish 1
Date: 24 Jan 10 - 03:55 AM

"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.

Subject: RE: A Wish for Autism
From: Dave the Gnome
Date: 24 Jan 10 - 06:40 AM

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)

Subject: RE: A Wish for Autism
From: Folkiedave
Date: 24 Jan 10 - 06:49 AM

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?

Subject: RE: A Wish for Autism
From: Ruth Archer
Date: 24 Jan 10 - 08:08 AM

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.

Subject: RE: A Wish for Autism
From: Ruth Archer
Date: 24 Jan 10 - 09:16 AM

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.

Subject: RE: A Wish for Autism
From: Wesley S
Date: 24 Jan 10 - 10:11 AM

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.

Subject: RE: A Wish for Autism
From: Bonzo3legs
Date: 24 Jan 10 - 11:12 AM

Speechless Child is on the Doom & Gloom cassette which I cannot find. I last saw it around 1986, it must be there somewhere???

Subject: RE: A Wish for Autism
From: SINSULL
Date: 24 Jan 10 - 11:12 AM

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.

Subject: RE: A Wish for Autism
From: Mrs.Duck
Date: 24 Jan 10 - 01:02 PM

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.

Subject: RE: A Wish for Autism
From: Lizzie Cornish 1
Date: 24 Jan 10 - 03:17 PM

"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.

Subject: RE: A Wish for Autism
From: Lizzie Cornish 1
Date: 24 Jan 10 - 03:18 PM

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.

Subject: RE: A Wish for Autism
From: Lizzie Cornish 1
Date: 24 Jan 10 - 03:22 PM

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."

Subject: RE: A Wish for Autism
From: Lizzie Cornish 1
Date: 24 Jan 10 - 03:24 PM

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

Subject: RE: A Wish for Autism
From: Mrs.Duck
Date: 24 Jan 10 - 03:40 PM

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.

Subject: RE: A Wish for Autism
From: Folkiedave
Date: 24 Jan 10 - 04:06 PM

Save yourself a bit of server space Joe, the words are here.

Subject: RE: A Wish for Autism
From: Rasener
Date: 24 Jan 10 - 04:18 PM

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.

Subject: RE: A Wish for Autism
From: Lizzie Cornish 1
Date: 24 Jan 10 - 04:20 PM

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.

Subject: RE: A Wish for Autism
From: Ruth Archer
Date: 24 Jan 10 - 04:38 PM

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.

Subject: RE: A Wish for Autism
From: olddude
Date: 24 Jan 10 - 04:43 PM

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

Subject: RE: A Wish for Autism
From: Rasener
Date: 24 Jan 10 - 04:55 PM

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.

Subject: RE: A Wish for Autism
From: Rasener
Date: 24 Jan 10 - 04:56 PM

>>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.

Subject: RE: A Wish for Autism
From: Lizzie Cornish 1
Date: 24 Jan 10 - 05:08 PM

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...

Subject: RE: A Wish for Autism
From: Lizzie Cornish 1
Date: 24 Jan 10 - 05:30 PM

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

Subject: RE: A Wish for Autism
From: Lizzie Cornish 1
Date: 24 Jan 10 - 05:35 PM

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.

Subject: RE: A Wish for Autism
From: olddude
Date: 24 Jan 10 - 06:04 PM

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

Subject: RE: A Wish for Autism
From: Lizzie Cornish 1
Date: 24 Jan 10 - 06:22 PM

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.

Subject: RE: A Wish for Autism
From: Lizzie Cornish 1
Date: 24 Jan 10 - 06:35 PM

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.........

Subject: RE: A Wish for Autism
From: Folkiedave
Date: 24 Jan 10 - 07:53 PM

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?

Subject: RE: A Wish for Autism
From: Lizzie Cornish 1
Date: 24 Jan 10 - 08:37 PM

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.

Subject: RE: A Wish for Autism
From: Dave the Gnome
Date: 25 Jan 10 - 09:18 AM

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)

Subject: RE: A Wish for Autism
From: SINSULL
Date: 25 Jan 10 - 10:10 AM

Given the living hell that "Carly" is forced to live in, explain to me again how autism is such a magnificent gift?

Subject: RE: A Wish for Autism
From: Lizzie Cornish 1
Date: 25 Jan 10 - 10:31 AM

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.

Subject: RE: A Wish for Autism
From: Dave the Gnome
Date: 25 Jan 10 - 10:36 AM

Did you know that there are only two sides to a circle?

:D

Subject: RE: A Wish for Autism
From: olddude
Date: 25 Jan 10 - 10:45 AM

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

Subject: RE: A Wish for Autism
From: SINSULL
Date: 25 Jan 10 - 10:48 AM

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.

Subject: RE: A Wish for Autism
From: Lizzie Cornish 1
Date: 25 Jan 10 - 10:56 AM

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.

Subject: RE: A Wish for Autism
From: Dave the Gnome
Date: 25 Jan 10 - 11:01 AM

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)

Subject: RE: A Wish for Autism
From: Lizzie Cornish 1
Date: 25 Jan 10 - 11:08 AM

>>>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

Subject: RE: A Wish for Autism
From: SINSULL
Date: 25 Jan 10 - 11:29 AM

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.

Subject: RE: A Wish for Autism
From: Wesley S
Date: 25 Jan 10 - 11:45 AM

"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.

Subject: RE: A Wish for Autism
From: Lizzie Cornish 1
Date: 25 Jan 10 - 12:08 PM

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.

Subject: RE: A Wish for Autism
From: SINSULL
Date: 25 Jan 10 - 12:13 PM

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.

Subject: RE: A Wish for Autism
From: Lizzie Cornish 1
Date: 25 Jan 10 - 12:18 PM

"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.

Subject: RE: A Wish for Autism
From: Lizzie Cornish 1
Date: 25 Jan 10 - 12:23 PM

"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?

Subject: RE: A Wish for Autism
From: Wesley S
Date: 25 Jan 10 - 12:36 PM

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?

Subject: RE: A Wish for Autism
From: olddude
Date: 25 Jan 10 - 12:48 PM

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.

Subject: RE: A Wish for Autism
From: Bonzo3legs
Date: 25 Jan 10 - 03:38 PM

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.

Subject: RE: A Wish for Autism
From: Wesley S
Date: 25 Jan 10 - 03:44 PM

100

I couldn't resist. It's my OCD acting out.