A Wish for Autism

Subject: RE: A Wish for Autism
From: Dave the Gnome
Date: 31 Jan 10 - 12:00 PM

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

Subject: RE: A Wish for Autism
From: olddude
Date: 31 Jan 10 - 12:49 PM

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.

Subject: RE: A Wish for Autism
From: Emma B
Date: 31 Jan 10 - 01:34 PM

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

Subject: RE: A Wish for Autism
From: Lizzie Cornish 1
Date: 31 Jan 10 - 01:38 PM

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

Subject: RE: A Wish for Autism
From: Dave the Gnome
Date: 31 Jan 10 - 01:49 PM

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.

Subject: RE: A Wish for Autism
From: Lizzie Cornish 1
Date: 31 Jan 10 - 01:54 PM

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...

Subject: RE: A Wish for Autism
From: olddude
Date: 31 Jan 10 - 02:05 PM

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.

Subject: RE: A Wish for Autism
From: Wesley S
Date: 31 Jan 10 - 02:08 PM

"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.

Subject: RE: A Wish for Autism
From: olddude
Date: 31 Jan 10 - 02:30 PM

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 .

Subject: RE: A Wish for Autism
From: Lizzie Cornish 1
Date: 31 Jan 10 - 02:33 PM

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.

Subject: RE: A Wish for Autism
From: Lizzie Cornish 1
Date: 31 Jan 10 - 02:38 PM

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

Subject: RE: A Wish for Autism
From: Jeri
Date: 31 Jan 10 - 02:44 PM

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.

Subject: RE: A Wish for Autism
From: Mrs.Duck
Date: 31 Jan 10 - 02:47 PM

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.

Subject: RE: A Wish for Autism
From: olddude
Date: 31 Jan 10 - 02:50 PM

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

Subject: RE: A Wish for Autism
From: Lizzie Cornish 1
Date: 31 Jan 10 - 02:52 PM

"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.

Subject: RE: A Wish for Autism
From: Lizzie Cornish 1
Date: 02 Feb 10 - 02:32 PM

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

Subject: RE: A Wish for Autism
From: Emma B
Date: 02 Feb 10 - 03:21 PM

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

Subject: RE: A Wish for Autism
From: Lizzie Cornish 1
Date: 02 Feb 10 - 04:13 PM

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.

Subject: RE: A Wish for Autism
From: Dave the Gnome
Date: 02 Feb 10 - 04:46 PM

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

Subject: RE: A Wish for Autism
From: Emma B
Date: 02 Feb 10 - 04:48 PM

Amen David - you have said it all - Thank you.

Subject: RE: A Wish for Autism
From: Folkiedave
Date: 02 Feb 10 - 04:57 PM

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.

Subject: RE: A Wish for Autism
From: robomatic
Date: 02 Feb 10 - 06:32 PM

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."

Subject: RE: A Wish for Autism
From: Emma B
Date: 03 Feb 10 - 10:04 AM

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'

Subject: RE: A Wish for Autism
From: Dave the Gnome
Date: 03 Feb 10 - 10:20 AM

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

Subject: RE: A Wish for Autism
From: Lizzie Cornish 1
Date: 03 Feb 10 - 11:34 AM

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:

[e-mail]

BBCBreakfast News Website

The more people who write, the bigger the impact will be.

Thank you.

Subject: RE: A Wish for Autism
From: Emma B
Date: 03 Feb 10 - 12:27 PM

"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

Subject: RE: A Wish for Autism
From: Emma B
Date: 03 Feb 10 - 01:14 PM

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

Subject: RE: A Wish for Autism
From: Lizzie Cornish 1
Date: 03 Feb 10 - 01:47 PM

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...)

Subject: RE: A Wish for Autism
From: Emma B
Date: 03 Feb 10 - 02:50 PM

"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

Subject: RE: A Wish for Autism
From: Lizzie Cornish 1
Date: 03 Feb 10 - 06:46 PM

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.

Subject: RE: A Wish for Autism
From: Lizzie Cornish 1
Date: 03 Feb 10 - 06:50 PM

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..

Subject: RE: A Wish for Autism
From: Mrs.Duck
Date: 04 Feb 10 - 12:53 PM

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.

Subject: RE: A Wish for Autism
From: Lizzie Cornish 1
Date: 04 Feb 10 - 01:34 PM

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...

Subject: RE: A Wish for Autism
From: Wesley S
Date: 06 Feb 10 - 10:46 AM

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

Subject: RE: A Wish for Autism
From: Lizzie Cornish 1
Date: 06 Feb 10 - 11:49 AM

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.

Subject: RE: A Wish for Autism
From: Lizzie Cornish 1
Date: 03 Mar 10 - 04:15 AM

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."

Subject: RE: A Wish for Autism
From: GUEST,Lizzie Cornish
Date: 20 Jan 12 - 10:46 AM

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

Subject: RE: A Wish for Autism
From: GUEST,olddude
Date: 20 Jan 12 - 04:04 PM

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.

Subject: RE: A Wish for Autism
From: Jack Campin
Date: 20 Jan 12 - 05:58 PM

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.

Subject: RE: A Wish for Autism
From: GUEST,Rose
Date: 07 Sep 15 - 09:23 AM

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.

Subject: RE: A Wish for Autism
From: Ebbie
Date: 07 Sep 15 - 04:48 PM

Congratulations on finally getting an answer, Rose. And now on to a good life!