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Ignorance of autism is ruining lives

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Published Date: 29 October 2007
BULLIED by their classmates as children, shunned by neighbours as parents, and refused work as adults, the lives of thousands of Scots are being devastated by ignorance about autism..
New research reveals that people with the condition are seven times more likely to be caught up in the criminal-justice system - as suspects, rather than criminals - because of poor understanding of the way autism can cause unusual behaviour.

About one in 100 Scots is affected by autism - a total of around 50,000.

Today's study paints a damning picture of our nation's attitude to those most in need of support and uncovers the shocking maltreatment of those battling the disorder, which affects how people communicate and socialise.

Damaging myths still persist that people with autism are a danger to the public, while mothers of autistic children are forced into virtual hiding by constant public criticism of their parenting skills.

According to the survey, 59 per cent of Scots wrongly believe there is a cure for autism. One-third think it affects only children. Almost two-fifths wrongly believe most autistic people have special abilities such as the character played by Dustin Hoffman in the film Rain Man. And when confronted with typical autistic traits, only one in eight people would think that person had a disability, with the rest most likely to think they were drunk, on drugs or just "odd".

The National Autistic Society Scotland is today launching a new campaign - backed by The Scotsman - aimed at changing attitudes and raising money to help those affected.

Think Differently - Act Positively is attempting to tackle the persisting misconceptions about the condition.

Carol Evans, national director of NAS Scotland, said: "This lack of knowledge devastates lives. One woman diagnosed with Asperger's syndrome described being forced to leave her local darts team, because rumours were spread that she was danger to the public.

"One mum of a child with autism described having to constantly explain to people what was wrong with her child, on planes, in shops, or even at the bus stop.

"The misinformed and judgmental attitudes of complete strangers made this woman a virtual recluse. This is unacceptable when one in every 100 people in Scotland has a form of autism."

Ms Evans said the new research had highlighted the need for greater understanding of autism. "We want to change perceptions of this complex and lifelong disability," she added.

"We know that without understanding the signs and characteristics of this condition, the public can mistake the behaviour of people with autism for being naughty, anti-social or 'weird', and presume the person with autism is dangerous or a threat.

"This campaign aims to dispel those myths and educate people about the reality, as the effect negative public attitudes have on parents is soul-destroying."

Ms Evans warned that many parents are forced to battle for appropriate educational support for their children, with many youngsters left in limbo for months while they are tormented daily by other pupils. She said: "Bullying is a problem. Often, they cannot fathom why other children cannot relate to them. One 16-year-old boy with Asperger's syndrome developed a phobia of going to school. As soon as he got there, he couldn't get out of the car and would have a panic attack.

"If his fellow pupils had had a better understanding of autism, this young man might have been able to access education - which is his fundamental right."

Statistics also show that only 13 per cent of autistic adults in Scotland have a full-time job.

Ms Evans said: "For some, lack of understanding from employers or employees can prevent them fulfilling their potential and making an active contribution to the economy.

"One man found it impossible to hold down a job due to bullying by workmates. His condition meant he wanted to complete his work as quickly as possible, without taking a tea break. This irritated the other workers, but without any training in autism, how would they know better?

"Unless there is increased awareness, people with autism will continue to be discriminated against in the workplace."

The number of people being diagnosed with autistic spectrum disorders is soaring - with a 623 per cent rise in the number of such pupils in Scottish secondary schools in just six years.

However, little is known about the causes of this lifelong developmental disorder. Some medical professionals have speculated that the triple measles, mumps and rubella (MMR) vaccination is one potential factor but no definitive proof has been found. Other experts believe the increased incidence is linked directly to growing awareness.

However, teachers still receive little training on the condition and many people are only diagnosed as adults.

Dr Evelyn McGregor, a lecturer in child development at Edinburgh University who co-authored a study on autism in 2001, said: "Many more children are entering schools with very mild indications of autism. This can create certain difficulties because they are not obviously autistic and cannot read social situations.

"They are easily misunderstood and can easily misunderstand the behaviour of others. Their behaviour can be interpreted as rude when really they are just very open.

"Autism is not a simple thing to diagnose, and mild autism is quite complicated - people need special training."

Your hopes for your child are just thrown into a melting pot


AS PHIL Astley watched his baby twins play, he knew there was a difference between them.

Andrew would fill his toy dumper truck with stones and then empty them one by one. Although it was perhaps not particularly unusual behaviour for a young boy, Andrew would spend hours repeating the task.

Meanwhile, twin sister Lauren was engaging her teddy bears in role play, with pretend tea parties.

And when Phil's wife Doreen pointed to a toy, Lauren would look at it, while Andrew would simply gaze at the end of her finger.

"They were all classic signs of autism, we later discovered," Mr Astley said.

Andrew was diagnosed as having Asperger's syndrome, a high-functioning form of autism, at the age of two.

Mr Astley, 40, from Newburgh, Aberdeenshire, said: "Between nine and 12 months there was something slightly different about Andrew.

"It is probably because we had Lauren to compare Andrew to, that we were made more acutely aware of the situation than we would have been."

The family said being able to meet the parents of other autistic youngsters - their twins are now aged five - and being referred to the National Autistic Society Scotland's advocacy service were a great help.

Mr Astley, who works as a records manager at Aberdeen University, said: "It is quite a lonely time when you have been handed the diagnosis.

"Your hopes and aspirations for your child are thrown into a melting pot and it was a real help to speak to people who have experience and knowledge of the education system [relating to autism].

"With Andrew and Lauren being our first children, through school we are at the bottom of a very steep learning curve.

"Andrew seems to be developing but we know that he is going to face difficulties socialising."

How you can help


Click here to make a donation

YOU can help the National Autistic Society with its bid to raise £7 million in five years.

Why not challenge yourself to raise £1,000?

You can raise the money however you wish, perhaps with sponsored events, jumble sales or even car- boot sales, and there's no time limit.

Sign up as an individual or with a group of friends and help NAS Scotland to support even more people living with autism.

The charity is appealing specifically to The Scotsman readers for their help.

As well as raising money yourself, you can sign up to a petition calling on the government to act.

Just £1,000 could allow NAS Scotland to train a volunteer with the Advocacy for Education Service on education law, rights and entitlements.

That person could offer four hours of support to parents each week, helping to empower them to obtain the best education for their child.

All the money raised by Scotsman readers will help fund such NAS Scotland services and programmes.

If you make a donation, you know that your help will make a positive difference to even more people living with autism.

THE CONDITION


50,000 Scots are estimated to be on the autism spectrum

200,000 Family members and friends are affected by the disorder

50% Of autistic pupils are bullied at school

59% Of people don’t realise there is no cure

38% Wrongly believe people with autism have special abilities in maths or art, as in the film Rain Man

Autism is a spectrum disorder meaning it can vary from very light symptoms, allowing people to lead a relatively normal life, to being a severely disabling condition.

Asberger syndrome is a high- function form of autism where those affected struggle with social interaction.

Symptoms vary but most sufferers find bright lights and noise distressing. Those with the condition tend to avoid making eye contact, and struggle to understand figurative and metaphorical language, making our everyday social interactions a daily battle.

The National Autistic Society Scotland was established in 1996 has 1,300 members and a network of nine branches across the country.

Page 1 of 1

  • Last Updated: 29 October 2007 8:55 PM
  • Source: The Scotsman
  • Location: Edinburgh
  • Related Topics: Autism , Autism campaign
 
1

Equal Rights for Autism,

Ayrshire 29/10/2007 01:49:51

I suggest that if the wider public wants to know what the REAL problems are with the treatment of people with Autistic Spectrum Disorder (ASD) by society, that they look no further than the following:-

http://www.autismrights.org.uk/BriefingPaperIndex.html

http://communitypeople.typepad.co.uk/youscotland_guest_bl...

These documents and the following articles in today's Herald are a far better reflection on where the real problems lie - i.e. with central and local government, not with lack of `understanding` from individuals.

http://www.theherald.co.uk/news/news/display.var.1792082....

http://www.theherald.co.uk/features/editorial/display.var...

http://www.theherald.co.uk/news/focus/display.var.1791963...

And we won't be asking for any charitable donations, just for you to take some time to read some information.

Giving money to train people to give out advice on current legislation on Special Educational Needs (the execrable Additional Support for Learning Act) is a waste of money, as you will see from the Herald's articles, the weblinks for which are given above.

Children with ASD are not charity cases, they are human beings with rights.

2

Charles Linskaill,

Chairman for the 'Babies-Union' 29/10/2007 02:12:51

1. Equal Rights for Autism, Ayrshire,
ABSOLUTELY..... 'WELL-SAID'!!!!!!!!!!!!!!!!!!!!!!
I have covered this subject many times and like any Child with any disability,
" are human beings with rights."
We are the ones that have the responsibility, to make sure every Child, is Loved and Valued to WHO they ARE! and not what we expect them to be!

3

,

29/10/2007 04:21:19
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4

Samcafe,

Glasgow 29/10/2007 05:45:10

awww Archie, it's 'journalism'

5

Boy Wonder,

29/10/2007 06:39:56

Autistic children grow up into autistic adults. Sometimes you just don't notice them because autism is such a wide and varied condition. You might even consider someone who collects junk, books, toys, or antiques as being a bit autistic. Why? Because unfortunately a whole lot of rubbish is written about it.

You treat your child/family member as well and as normally as any other. You don't single them out for special attention. They know what you're doing for the most part and can become resentful, which might allow a differing behavioural response to emerge and not one that's so benign. Nope, you have to treat them as normally their siblings.

Do yourself a favour and read up on this subject, because it's not so well understood as it could be.

6

,

29/10/2007 07:36:17
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7

Equal Rights for Autism,

Ayrshire 29/10/2007 09:00:19

Charles #2 - thank you.

. Archie, Gourock / 4:21am 29 Oct 2007

`My heart goes out to children and their families with autism. Truly, it does.

What we need is to focus on debilitating autism and not ADHD and Asperger's.

So much resource and focus is wasted on these non-conditions which used to be termed "bad behaviour" via bad or ineffective parenting.

I can't believe they spelled this "Asbergers". The standard of jounralism in this paper has gone to hell on a handcart.`

Archie, just exactly what is your experience of autism or Asperger's Syndrome? You are talking garbage. ADHD is a label, covering many things including `bad behaviour`, but too often it's either normal behaviour that a school or parent is incompetent to deal with, so they give the child drugs rather than admit this - or it is a child who has been wrongly diagnosed who is on the autistic spectrum. Asperger's Syndrome is part of the autistic spectrum, and is not `bad behaviour`. Please don't let your ignorance cause any more hurt to children with this disability, or to their families. Educate yourself.

Where money ie really wasted is on bureaucracy. We have 32 local authorities, each with their own director of education and senior officials - we used to have 8, before the Tories tried to gerrymander a couple of councils for themselves. They only have one of these after 8 years or so - and it makes not a blind bit of difference to how their education department is run - they're still wilfully incompetent when it comes to educational provision for children with ASD.

Boy Wonder #5 - I think you also need to read up quite a lot on autism before you spout forth on it. Don't imagine, however, that this will give you the insight of a parent. We are heartily sick of so-called `professionals` who do this, to fit in with a culture of denial by local and central government - denial of the numbers of children with ASD out there,

8

Crank Parent,

29/10/2007 09:01:33

3. Archie, Gourock

"What we need is to focus on debilitating autism and not ADHD and Asperger's. So much resource and focus is wasted on these non-conditions which used to be termed "bad behaviour" via bad or ineffective parenting."

Pardon?

Your comments are a perfect example of the "misinformed and judgmental attitudes" described in the article above.

9

Equal Rights for Autism,

Ayrshire 29/10/2007 09:13:39

For between £1,000 and £2,000 you could train a teacher up to a real qualification - current courses on ASD could be adapted to form a Teaching Qualification

Instead of giving the NAS over £600,000 to put together an `accrediitation` scheme for autism training, and a further £??? to the Scottish Society for Autism creating another one for Scotland, we could actually have the creation of a TQ course in autism, either as a one year post-grad. Initial Teacher Education TQ, or part of a 4 year B. Ed. in Special Educational Needs. There are already professional qualifications available via Birmingham, Sheffield Hallam and Strathclyde Universities. It would not take much to upgrade them to TQ status, and to adapt them for the various other professions who need a thorough knowledge of ASD.

£1,000 or even £2,000 on a real course that has to be studied for and examined on for a professional qualification is vastly better than spending the equivalent and more on unassessed Continuing Professional Development courses lasting a day or three which are run by the NAS and SSA and cost £200 per day - and that does not account for class cover by supply teachers.

The waste of taxpayers' money and our children's lives is truly staggering, and the media refuses to cover this, and instead churns out pap like the above.

10

,

29/10/2007 09:15:19
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Reason: Scotsman Import, Original comment id: 1096461, Article id was mapped to record!
11

,

29/10/2007 09:21:55
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12

Equal Rights for Autism,

Ayrshire 29/10/2007 09:26:59

I should also have given the weblink for my `Guest Vocals` article in the Sunday Herald, which is at least one newspaper that is worthy of the name in Scotland. This article is a critique of HMIe's `inspection` of educational provision for children with ASD within Scotland.

http://sundayheraldsalon.com/salon/2006/11/pupils_with_au...

There is plenty more evidence for the sheer awfulness of this provision, but it is mainly provided by the UK media, and you can access the weblinks for this via the main text of the Autism Rights Briefing Paper:-

http://www.autismrights.org.uk/BriefingPaperIndex.html

and also via the collection of Education weblinks at:-

http://www.autismrights.org.uk/Education.html

13

Anglofile,

Hartlepool 29/10/2007 10:03:33

I have a son who. along with having Downs Syndrome is also Autistic.

We noticed his Autistic traits when he was much younger and fought tooth and nail with the so called "experts" to have it acknowledged. He is now 19 yrs old and it was only in the last 4 years that they "agreed" to have it included in his statement.

Never give up fighting against "authorities" who claim to be experts, the only experts are the parents who live with the Disability and know their own kids.

14

A Dedicated Father,

Aberdeen 29/10/2007 10:09:17

As a devoted father of an autistic child, the one thing that really frustrates me is to be told "there is no cure".. To be told "I am in denial". I just don't accept that.

Tell that to the parents of thousands of children worldwide who have made a TOTAL recovery thanks to a better understanding of the complex causes of autism.

My own 5 year old daughter is making HUGE strides forward using a biomedical approach. She is a completely transformed kid in just 3 months. If you are REALLY serious about helping your child, find yourself a DAN (Defeat Autism Now) Doctor. There is a clinic in Edinburgh.
http://www.autismtrust.org.uk/

If you don't believe me read Jaquelyn McCandless's book, Children with Starving Brains: A Medical Treatment Guide for Autism Specrum Disorder

Here you will find a message of true hope!
Good luck..

15

I GAVE BLAIR THE FINGER LAST WEEK,

OBAN 29/10/2007 10:38:08

And while were on the subject and we have Archie the Pharma -troll trying to bully and intimidate..LETS LOOK ALSO AT THE CAUSE OF AUTISM ?

http://www.whale.to/a/mmr_kids.html

The MMR children are living proof of challenge-dechallenge- rechallenge reactions. Challenge-dechallenge-rechallenge is well established science and accepted as the strongest scientific proof existing of a causal connection between a pharmaceutical preparation and an adverse drug reaction (‘ADR’) (1).

A major omission from the published scientific papers which are cited as purported evidence of no link between MMR, autism and other ailments is the absence of any attention to test/re-test or challenge/de-challenge/re -challenge tests as a drug research and development tool. United States Congressman Dr Dave Weldon MD heavily criticised the US Institute of Medicines’ partisan 2004 report on vaccination. Congressman Weldon specifically raised the issue (2) that challenge-dechallenge-rechallenge studies have been ignored and studies in that regard went unheeded:-

“In 2001 you found that cases of MMR “rechallenge” would provide evidence in favor of causality. It is my understanding that Dr. Wakefield has developed such a case series. The lack of an invitation is puzzling.”

16

I GAVE BLAIR THE FINGER LAST WEEK,

OBAN 29/10/2007 10:59:05

Would also like it noted that the National Autistic Society is a waste of time and swallows up millions of pounds from well meaning celebs from charity bashes THEY ARE THE CHURCH WING OF THE PHARMA COMPANIES GIVEN THE NOD AND A WINK BY THE GOVERMENT TO MAKE SURE THE MONEY IS SPENT ON ANYTHING BUTWHAT IS THE CAUSE OF AUTISM

MMR RIP

17

scully,

Colchester 29/10/2007 11:17:45

When I worked with thw NHS. I worked in a Residential Hospital For the Mentally Handicapped. Teaching the Residents Handicrafts. . Then went on to have my own Speech Therapy Room. When a new Resident was sent me for Speech Therapy. I used to read what other O/Ts had written in there reports. about the Resident.. Not two reports were the same. it was hard to sort out there comments.So I decided that I would make my own mind up after I had finnished my session with the Resident. I could not substanuate any of there Comments in there reports.When people write reports it is based on there personel feelings and beliefs. If they dont like the Resident they are inclined to give a wrong report which can do untold damage to the Resident and there family,s and of course this is visa versa. you have to remain unbiased


Wonder Boy stop making me Laugh its to early.I can see a lot of truth in what you say.

18

scully,

Colchester 29/10/2007 11:37:01

15 .ADF Aberdeen

15, I am going to make a point of going to the Library tomorrow to get JaquelynMcCandless book, I do not know what Autism is ,and I would like to understand fully what the parents have to go through to get help.I know how hard it is to get the help you need . My husband was disabled the last 10years of his life.In fact I got no help at all.. I also agree with what 17 say,s.. I will comment again when I have a better understanding whatyou are saying . in the meantime I hope you get all the

19

scully,

Colchester 29/10/2007 11:38:22

ALL THE HELP YOU NEED

20

alex paterson,

embra 29/10/2007 12:16:39

#4 It just the EENs version.

21

Aspie wife,

29/10/2007 12:27:17

All this help for CHILDREN!!!!

What about the ADULTS!!!! that get diagnosed. They need help too..... and so do us long suffering and over stretched spouses who are expected to support the "foibles" of their partners with no extra funds or other forms of support.

22

peteedinburgh,

29/10/2007 12:32:37

#17

The NAS spent a day in diagnosing my sister's complex mental problems and their advice was key in accessing better care for her after family bereavement caused a lapse back into illness.

Mental health is pathetically neglected in the NHS - you have to know how to work the system or be abandoned in sink "acute illness" wards. Volunteer organisations such as the NAS, and Rethink( Was National Schiziphrenia Society) are vital in supporting sufferers and carers and your comments are offensive to thousands of volunteers. I insist you apologise

23

Theodore,

London 29/10/2007 12:42:12

#3 Archie.

Can you explain what Asperger's syndrome is?

You mention it does not compare with autism...what is the difference?

24

nooker,

29/10/2007 23:06:39

What about Deaf Children and Need good educate at Deaf school not at the mainstream school!!!!!!

25

Patricia,

Kilbowie 29/10/2007 23:49:54

My grandson suffers from dyspraxia which some say is one of the branches of autism. He is thirteen years of age and for the past elevenyears his mother has been trying to have him assessed without success. Although he is only capable of multiplying by four , with great difficulty, and can read only the most simple sentences, he and his colleagues at school are wasting their time in a German class four times a week. Thhis week and last week he watched childish videos like "Home Alone " during their English periods. God help these children in three years they will be on what is commonly called the economic scrapheap with no prospects of happinesss. As a country we are failing our disabled children their parents ought not to have to spend their lifes fightinging for what are the childrens basic rights.

26

An Australian of Scottish Ancestry,

30/10/2007 00:34:49

After being diagnosed with Asbergers Syndrome at the age of four, I have since migrated to Australia, graduated from the University of New England (Australia) with a Bachelor of Laws and Finance degree, maintained dual UK and Australian citizenship, and now operate as a partner in an importation firm in New South Wales, Australia.

#24,
It's a form of autism which, in lay terms, affects one's sbility to communicate, socially interact and inter-relate with others. For example, I can write practically anything, but if I were to try to say this to you verbally - over a cup of coffee or such, then I would find it very difficult.

I have very protracted periods of aloofness and I become deeply withdrawn socially.

27

An Australian of Scottish Ancestry,

30/10/2007 00:37:52

I have had a lot of help, and I owe much of what I now have to a couple of people in particular - but no one should ever be socially dismissed because of a diagnosis.

28

An Australian of Scottish Ancestry,

30/10/2007 00:41:13

#11,
The only kids whom I have ever known with the diagnosis of ADHD were from working-class families. Is there now a correlation between mental and developmental health and socio-economic status?

29

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30/10/2007 01:07:30
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An Beal Bacht,

Travelling in Nihlon 30/10/2007 01:14:12

Data based decision making and ABA improves outcomes for people with ASD. Unfortunately, there are sharlatans and snake oil salesmen out there feeding on other peoples pain. There are no magic bullets which will cure this disorder.

There are therapies that can improve outcomes, however, but these are intensive and should start as soon as a diagnosis has been made.

Problem is, they are cost intensive over the short term although they would amelliorate costs over the long term.

As we well know from our present political climate, governments are forced to work within a budgetary framework of three to four years. High front end costs make these kinds of therapies unatractive to government.

However, adopting a system of triage in determining who gets funding/treatment would ensure the highest return for the money.

This may seem bleak but there it is!

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30/10/2007 01:34:45
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30/10/2007 01:53:55
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30/10/2007 02:07:53
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30/10/2007 02:19:42
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30/10/2007 02:23:58
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30/10/2007 02:51:12
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An Beal Bacht,

Travelling in Nihlon 30/10/2007 04:17:24

Well - this thread about autism has been hijacked by someone in deperate need of help apparently suffering from schizophrenia. Too bad - this was an important topic.

38

Friend-at-large,

30/10/2007 07:22:14

Scunnert, I do believe you are right on both points--this is an important topic and that the forum has been hijacked.

I liked Dr. Amen's book on ADHD.

Some of my co-workers are Asberger's types and respond well to written messages left on their desk. (It seems to be the just right way for me to interact with them.) They do tuck into their work admirably. Another one of my co-workers has bi-polar disorder (this was told to me by one of her friends) so life at work is vivid at times. Medicine doesn't fix everything. Education that is tailored to an individual is essential.

39

I GAVE BLAIR THE FINGER LAST WEEK,

30/10/2007 12:55:26

Missed the persons comments that have been removed.With Autism they make out its all this great mystery sperm counts,refridgerated mother ?(remember Bettelsheim )Kaner and Hans Asperger Its no mystery what casues all these centrel nevous cystem problems Its no mystery its vaccines..

Heres a great little film 20 minute clip of a 90 minute film look at it and see the exact same cover up going on with Autism,Aspergers,ADHD,etcAnd what does the NAS spend per year on looking in to causeal zero pence per year every year???

"THE ORIGINS OF AIDS"http://www.dailymotion.com/video/xpzly_origins-of-aids .

It tells the story of a polio vaccine developed and administered in Africa in the 1950s, using chimpanzees as the source

40

lucy lou,

falkirk 30/10/2007 13:38:28

I have read with much sadness some of the comments on this article.
I have one child on the spectrum and a second currently being assessed.
I am not a refrigerator mother, my husband was under 32--bang goes the sperm count drivel.

Are my children spoilt brats-no they are not.
@Archie--i can only assume you are doing a bit of flamebaiting here otherwise you are one sadly misinformed individual.
Do your research and get your facts sorted before you make such crass comments about our lovely kids who have very real difficulties.
And as usual the thimrosal/mercury/MMR zealots intend to take over and turn this into a lambasting of the drug companies rather than have a discussion around this pervasive condition.
i am amazed at how you find Archie's comments offensive but then instead of trying to enlighten him you accuse him of being in the pocket of pharmaceutical companies.
I think someone who is claiming it is just spoilt behaviour is hardly likely to be having a vested interest in money from the pharm's.
If you want to learn more then have a good look at decent articles --learn about the triad of impairments and the impact these have on the lives of children and adults on the spectrum

41

Not a fan of Vlad but.......,

Fife 30/10/2007 14:54:48

Changes need to be made at government level to support families and people affected by autism.

Me and my wife have been waiting almost 2 years just to get a diagnosis for my son with still a few months to go so we are told.

The news was initially broken to us my some inept health assistant (I think thats what they call themselves) at my sons 2 year check who told us not to worry as our son would have a normal life but people might might thinks hes a bit odd! oh and he might be able to play the piano but not boil a kettle. Very useful information which gets me and my wife through our daily routine!!!

We have now gone 2 years in which we have seen a speech therapist twice - maybe 3 times. Paediatrician twice. The only people who have been helpful are the Playgroup, nursery and school - the people that aren't the paid specialists who are supposed to be there to helps us.

42

I GAVE BLAIR THE FINGER LAST WEEK,

30/10/2007 18:13:58

lucy lou
The point you miss is that Archie and the trolls die with is one thing they can assure you it aint vaccines??Visit JABS website have goggle maybe your in denial of hdoing harm to your kids?Been and done that one?

Father of autistic low functioning boy aged 9 with a school assessed mental age of 2 G was born at full term following a healthy pregnancy and straightforward delivery on 30th August 1997. He was a large, bouncing baby boy weighing in at 9lb 12oz and we were delighted. We had our second son and our two year old,, had a brother and future companion and we looked forward with optimism to normal family life with two boys.
At 5 months old his Health Visitor recorded that he was a "Bright sociable child" and at 7½ months "Meeting milestones well". He loved to be picked up and cuddled; his eye contact was excellent and he responded to us readily with beaming smiles and crows of delight. He was very vocal and developed a considerable range of babble. He also showed great interest in his brother, watching him, crowing at him and, as soon as he could crawl aged 9 months, trying to follow him about. At 9 months G, who ate well and would try anything we gave him, started to try to feed himself with his spoon and before his first birthday we were hearing "da" for "dad".
G received the MMR vaccination on 22nd September 1998 at the age of 13 months. He reacted to the vaccine, becoming feverish and developing a very persistent cough. His skin, which had always had a tendency to be dry, flared up into itchy red patches and he went right off his food and became very quiet and withdrawn. After two weeks he had not regained his appetite for the foods he had previously eaten with relish apart from milk and fromage frais which he craved and ate to the exclusion of almost everything else. He was still quiet and withdrawn and he was now avoiding his brother. He now disliked being picked up and would stiffen

43

I GAVE BLAIR THE FINGER LAST WEEK,

Oban 30/10/2007 18:14:27

We had no idea what to expect, no idea how severely G was affected and nobody could tell us. All we were told, and this with absolute certainty, was that there was no cure. His condition continued to deteriorate post diagnosis and we had no idea how much worse he was likely to get. He still succumbed to regular, severe ear infections and was also subject to inexplicable bouts of diarrhoea which alternated with bouts of constipation. G behaviour became increasingly bizarre and difficult to manage. He appeared to have no comprehension of anything we said to him so we couldn't make him understand consequence, danger, appropriate behaviour or even communicate to him our plans for the day. We lived on our nerves constantly trying to second guess him and prevent accidents. His behaviour lurched between bouts of extreme hyperactivity and bouts of being completely "zoned out". A range of bizarre self-stimulatory behaviours, spinning, flapping and squinting also developed.

G's condition did not improve over the years. In fact as he grew older, larger and faster in many ways he became more difficult. Autism is an unyielding condition and it is our family that has had to adapt over and over again to manage and contain G and keep him safe.

G is now a handsome nine year old and severely autistic. He lives in his own world with very little language and his social development is profoundly impaired. He has no relationship with his older brother at all; they live in the same house and that is about all that can be said. His behaviour is still as outlined previously but sleep disturbance means he is frequently awake for half the night and so are we. Much of his behaviour is perceived as inappropriate now that he is older and this is going to become even more of a problem as he enters his teens. We have no idea how puberty will affect him.

Autism is a devastating disorder and has been a tragedy for G. It has destroyed his potential and deprived him o

44

I GAVE BLAIR THE FINGER LAST WEEK,

Oban 30/10/2007 18:16:51

Not a fan of Vlad but

The reason for delay is to keep the autistic figures down and also you cant access special needs services without the LABEL. Again go to JABS forum loads of advice on that site .Dont go to to NAS as they are goverment poodles funded by PHARMA??

MMR RIP

45

lucy lou,

30/10/2007 20:23:02

I gave Blair the finger Last week

No i am not in denial-- You make a considerable assumption that my kids actually had the MMR !
Nor do you have to tell me of how devastating it can be watching your child unable to hold appropriate social interaction and instead of playing with peers prefering to stim,flap and scream.
As i said i am now having my youngest go through the assessment process as well as my eldest.
I have done my research and i have been on jabs website.
I am familiar with the work of Simon Baron cohen and have looked at the evidence now pointing to a genetic link that is polygenic in as much as there are also other factors.
Indeed the scotsman ran an article on this quite recently.
However i would have to say that frankly i am not overly interested on the whys i am accepting enough of my childrens disabilities to say this is who you are and this is what we do.

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I GAVE BLAIR THE FINGER LAST WEEK,

Oban 30/10/2007 20:38:36

Simon Baron-Cohen is one of the UK's leading autism experts and the one with the highest media profile, but is he really serious? If you were asked to write something optimistic about autism would you come up with this? Disregarding the vaccine issue which Baron-Cohen denies (but what, since he mentions hormones, about testosterone and mercury?) this to my mind seems flippant and trivial. And it is an interesting thing what this tells the public about our lives.


From The Independent on Sunday Review 21 January 2007:

http://news.independent.co.uk/uk/health_medical/article21...

What are you optimistic about?

Global warming, the war on terror and rampant consumerism getting you down? Well, lighten up: here, 17 of the world's smartest scientists and academics share their reasons to be cheerful

Simon Baron-Cohen

Psychologist, Autism Research Centre, Cambridge University; author, 'The Essential Difference'

The rise of autism

Whichever country I travel to, attending conferences on the subject of autism, I hear the same story: autism is on the increase. Thus, in 1978, the rate of autism was four in 10,000 children, but today (according to a Lancet article in 2006) it is 1 per cent. No one quite knows what this increase is due to, though conservatively it is put down to better recognition, better services, and broadening the diagnostic category to include milder cases such as Asperger's syndrome.

It is neither proven nor disproven that the increase might reflect other factors, such as genetic change or some environmental (eg, hormonal) change. And for scientists to answer the question of what is driving this increase will require imaginative research comparing historical as well as cross-cultural data. Some may throw up their hands at this increase in autism and feel despair and pessimism. They may feel that the fu

47

I GAVE BLAIR THE FINGER LAST WEEK,

Oban 30/10/2007 21:00:09

Sorry to read about your kids..If you have trouble with diagnosis Thoughtful House in America are the best in the world.As I said it took us over 2 years to get a low fuctioning Autistic son dignosed and if you met him within seconds you would know ..Good luck!

MMR RIP

http://www.kxan.com/Global/story.asp?S=7282222&nav=me...

Doctor Encourages Early Screening For Autism

Oct 30, 2007 12:08 AM

One of the leading pediatric groups in the country is calling on children to be screened earlier for autism.

It's issuing a clinical report detailing signs and symptoms for parents.

A new report aims at identifying and managing autism. The goal is to test sooner rather than later.

For Dr. Bryan Jepson, autism hits close to home. Not only does he treat autistic children, his son suffers from it.

"The earlier you can treat kids with autism, the better they do," Jepson said.

Jepson heads medical services at Thougtful House, a facility for families like that of Amy Maslik, a mother of four with an autistic son.

"Every one in 150 children is diagnosed with autism," Maslik said. "That's a huge amount."

It's one reason the American Academy of Pediatrics wants parents to get their children screened at least twice for autism before they reach 2 years old.

While it may vary, Jepson said by the age of 1, most children are developing lanugage. By 16 months, they've developed words, and by 24 months, they're stringing words together.

"If that's not happening, then that's another red flag that you may need to consider autism," Jepson said.

Jepson said another thing parents can do is watch how their child plays with toys. For example, most children will stack blocks, but an autistic child may simply line them up. Most children will play with a toy car, while an auti

48

lucy lou,

30/10/2007 21:14:11

I would agree this is indeed a flippant article and i would not say i am a fan of SBCohen.
I was merely establishing the fact that there are other articles and thoughts out there other than JABS. To say that i or any other parent is in denial of a diagnosis or prognosis because they will not follow a particular theory is a very sweeping and derogatory statement.
I have done my grieving for the son i thought i had and now fully accept and love the child that i have in reality. Will i grieve again if my youngest daughter is confirmed as ASD--yes i will, because i know how much harder her life will be. However i will not waste my time or energy that i need to care for my children on looking for something or someone to blame.
However i will stand up for them and when ill informed and umm quite frankly ignorant comments are made such as those from Archie come along it becomes time for one to open ones working class gob.

49

I GAVE BLAIR THE FINGER LAST WEEK,

Oban 30/10/2007 22:00:38

Quite agree Lucy Lou Denial is the biggest problem stopping treatment for the kids and Autism Is Treatable .It took us about 4 years to realise yep! Autism hes got it its massive how are we going to sort it?People used to say to us were in denial which we were because the last thing you want to believe is you harmed your kid..dosent do anyones psyche any good to think it .Then again BIG PHARMA dont hide the facts either Recognised Adverse Reactions to MMR

As a background to the controversy about MMR’s safety, it is important to make clear that there is already a range of adverse reactions to the vaccine that are recognised by the manufacturers themselves, if not by the UK Department of Health. The latter insists that the vaccine is safe and has a good safety record worldwide. However, the February 2000 edition of the manufacturer’s notes, issued by Merck & Co., lists the following possible adverse reactions reported during clinical trials:

(body as a whole) panniculitis, atypical measles, fever, syncope, headache, dizziness, malaise, irritability

(cardiovascular system) vasculitis

(digestive system) pancreatitis, diarrhoea, vomiting, parotitis, nausea

(endocrine system) diabetes mellitus

(hemic and lymphatic system) thromobocytopenia, purpura, regional lymphadenopathy, leukocytosis

(immune system) anaphylaxis and anaphylactoid reactions, angioneurotic edema, bronchial spasm

(musculoskeletal system) arthritis, arthralgia, myalgia

(nervous system) encephalitis, encephalopathy, measles inclusion body encephalitis (MIBE), subacute sclerosing panencephalitis (SSPE), Guillain-Barre Syndrome, febrile convulsions, afebrile convulsions or seizures, ataxia, polyneuritis, polyneuropathy, ocular palsies, paresthesia. On encephalitis, the Merck notes state that "the data suggest the possibility that some of these (reported) cases may have been caused by measles vaccines."

(respiratory system) pneumoniti

50

I GAVE BLAIR THE FINGER LAST WEEK,

Oban 30/10/2007 22:11:00

Brian Cohen borders on utter nonsense. There are many non-autistic people with IT ability and many autistic people without it: it consoles me not at all. What hope does Prof Baron-Cohen, leader of his profession offer my son? ('Sarcasm and bullying have replaced science and human respect').

If he does not listen to parents (which ought to be a major part of his job) why should we listen to him. Frankly, he ought to be bothered and we ought to have a proper debate.

It is question with his grandstand seat for the mass diagnosis of autism in the past two decades why Baron-Cohen is unable to say whether the rise is real or not. This should not add to his credibility. Then there is the almost incomprehensible statement about hormonal factors being "environmental".
"What does he mean by environmental hormones? Is he blaming autism on hormone fed beef, chicken, the birth control pill or testosterone patch? I thought hormones were endogenous and part of the endocrine system..."

I have great respect for Ellen C Grant who attributes much of the breakdown in public health to the contraceptive pill, but I wonder whether that is what Baron-Cohen is talking about.

Perhaps, as he leaps from important conference to important conference being smart, he could tell Independent on Sunday readers what all this is going to cost and who is going to look after our children when we no longer can.

MMR RIP

51

lucy lou,

30/10/2007 22:59:23

Perhaps i am too tired but i get the feeling that you are being deliberately obtuse here.
I will do my best to improve my kids lives but i will not buy into any cure for autism nor will i join a witch hunt against the pharmas.
How can i blame MMR when i have not even said my kids had the MMR.
I can spend my time looking at the whole thimerosal/mercury/MMr debate and the chealtion therapy schholl of thought as well as DAN and ABA or i can concentrate my efforts on my kids.
I know which i would choose

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31/10/2007 02:03:32
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I GAVE BLAIR THE FINGER LAST WEEK,

31/10/2007 10:34:40

No offence meant believe me there is no easy way to say these things unlike the lies Pharma and the NAS puppets spew.
ADHD,Autism,Aspergers are not cotractable if you dont vaccinate so its hardly rocket science to link any of these to vaccine..Check out below ..all the best

http://www.whale.to/vaccine/olmsted1.html

"But thousands of children cared for by Homefirst Health Services in
metropolitan Chicago have at least two things in common with thousands of
Amish children in rural Lancaster: They have never been vaccinated. And
they don't have autism. "We have a fairly large practice. We have about
30,000 or 35,000 children that we've taken care of over the years, and I
don't think we have a single case of autism in children delivered by us who
never received vaccines," said Dr. Mayer Eisenstein, Homefirst's medical
director who founded the practice in 1973."

56

lucy lou,

31/10/2007 10:51:12

Ok for the last time--at least one possibly 2 of my children are on the autistic spectrum--without any vaccine being involved.
So short of calling me a liar where is your theory now.
If you choose to believe the vaccine is responsible for your childs condition then that is entirely your choice. However i cannot make that link and to patronise me in the way you have by saying it is hardly rocket science is less than i would have expected from a parent of a child with ASD
Whatever the cause or your belief around the cause of this condition i would never do less than suppport any other parent in this situation in the day to day difficulties of caring for our children.
As i have said my children are my priority --not trying to prove a point about my beliefs. I do not actually give a damn about big pharmas , have never used NAS or involved myself in anything they do and if the fact that my refusal to jump on any bandwagon disturbs anyone then so be it

57

I GAVE BLAIR THE FINGER LAST WEEK,

31/10/2007 11:33:12

No offence meant outside vaccines what causes Autism

Exposure to RHOGAM during pregnancy
http://www.whale.to/a/rh1.html

Mercury during pregnancy and after it,and any exposure to it There are many sources of mercury in our environment, including breathing exhaust from coal burning power plants, ingesting fish, and leaking from mercury amalgam dental fillings, and the dangers of mercury have been recognized by our government for many years. However, in the late 1980's and early 1990"s there were some changes that dramatically effected the amounts of mercury that fetuses and babies were exposed to.

http://www.attorneyaccess.net/Thimerosal.cfm

Over use of antibiotics on immature immune systems such as Strep B this is the catch all scare tactic enforced by the NHS (its a hoax)
Antibiotics During Labor Ineffective for Group B Streptococcal Infection in Newborns

Researchers conducted a review of infants who had early-onset group B streptococcal (EOGBS) infections and were born in Southern California Kaiser Permanente Hospitals from 1988 through 1996. To summarize:

319 infants with EOGBS sepsis, bacteremia, or clinically suspected infection were identified from a population of 277,912 live births (approximately 1 in every 870 births).

Of the 172 term infants with culture-positive infection who had clinical signs of infection, 95% exhibited them in the first 24 hours of life.

All of the infants exposed to antibiotics during birth became ill within the first 24 hours of life.

Researchers concluded that "Exposure to antibiotics during labor did not change the clinical spectrum of disease or the onset of clinical signs of infection within 24 hours of birth for term infants with EOGBS infection."

Pediatrics August 2000; 106: 244-250


I

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I GAVE BLAIR THE FINGER LAST WEEK,

31/10/2007 11:45:14

Autism is...

[By Susannah Benady. Thanks to autismnet.]
http://www.medicalpost.com/mdlink/english/members/medpost...

Quebec City - Researchers are calling for a radical new definition of
autism in the wake of evidence presented here that autism is in fact an
autoimmune disease, rather than a mental handicap.
This was the consensus among doctors at the forefront of research into
the physiological complications that affect many children with autism and
autism spectrum problems. They presented their findings at the second
International Medical Conference on Autism held here in April.
No longer can the condition just be considered a psychiatric or
neurological disorder, they argued. Autism had to be seen as a systemic
illness that has gastrointestinal, immunological, endocrinological,
psychological and neurological complications.
Dr. Jeff Bradstreet, a pediatrician and medical director of the
International Autism Research Centre in Palm Bay, Fla., said virtually all
children diagnosed with autism also have some other significant abnormal
function.
He said that is why the term "autism" is misleading and should be
replaced with a phrase that better describes the child's physical condition.
"Autism is a psychiatric term," he said. "I consider 'toxic
encephalopathy' a better description because it implies that there is
something we can do if we detoxify the individuals."
Dr. Bradstreet's research centre specializes in treating children with
autism spectrum disorders by investigating their underlying or coexisting
physiological condition and treating that with a combination of conventional
drug therapy and nutritional supplementation.
The aim is to treat the


 

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