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January 18, 2002        News Morgue Search  www.feat.org/search/news.asp

AWARENESS

·        Readers Raise Twice The Target

·        Children’s Charity Criticises Global Immunisation Initiative

·        Hard-hitting Ads Aim To Heighten Awareness

·        Leading Article: A Great Society

 

Readers Raise Twice The Target Goal

[By Helen Rumbelow in the Times, UK.]

http://www.thetimes.co.uk/article/0,,2-2002029261,00.html

Forty years ago, one mother re-mortgaged her home to set up the National Autistic Society so that her son and others with his condition would be saved from the asylum.

Yesterday the charity celebrated the beginning of its anniversary year

with the news that readers of this paper had raised £150,000 through the

Times Appeal — double the original target.

The Princess Royal, the charity’s patron, paid tribute to the generosity of The Times readership, which will enable thousands more isolated and despairing families to be helped.

The money is needed more than ever, said the Princess. Although the

charity has transformed from its beginnings in the kitchen of Helen Allison’

s home in West London to the foremost source of support, information and

advocacy in Britain, the number of people diagnosed with the condition has

boomed.

More than half a million people in Britain are autistic and one in

every 166 babies born will develop the disability, but provision remains

woefully inadequate.

Few autistic people now remain in mental hospitals, but thousands of

families are imprisoned in their houses because they do not have the diagnosis, education or support to which they are entitled.

The Princess launched the theme of the charity’s 40^th anniversary

campaign, “The problem is understanding”, communicating the seriousness and

extent of autism to government, as well as doctors, teachers and members of

the public.

She praised the Times Appeal and congratulated the National Autistic

Society (NAS) on its achievement.

She said: “Autism is an invisible disability with often devastating

consequences for parents, families and friends. I hope that all who hear of

the 40^th anniversary campaign will recognise what a real difference can be

made to people with autism and their families by providing the support that

the charity needs.”

Ilse Burnell, 77, is one of the founding group of parents who helped

Helen Allison develop the world’s first school dedicated to autism in 1962,

housed in an empty British Rail store room in West London. Her daughter,

Helen, now 42, is the first generation to be cared for in NAS specialist

schools and homes.

Mrs Burnell said: “Thanks to the charity things have improved

tremendously, but I look around and see families in just the same position

as us, because there are so many more people with autism and nowhere near

enough places in schools.”

It is on a personal level that the money from Times’ readers will make

a difference, said Jane Asher, the charity’s president. She added: “We feel

like more has been achieved in a few weeks of intelligent, sensitive reports

than in years of media coverage. This money will transform lives.”

The human stories behind the condition highlighted by the Times campaign show how much still needs to be done, said Ms Asher.

Fiona Farrell, the former London Today and Sky news presenter, told

the launch meeting of a typical experience of having an autistic child.

Three years ago she was pushed out of a doctor’s office after her diagnosis

of her son’s condition and offered no further support.

Brett was then two years old and Ms Farrell said that she spent six

months feeling guilty, angry and very alone.

“Then I did a very important thing. Someone at ITN told me about the

NAS and I gave them a call,” she said. “All the improvements Brett made came

from what happened in that call. It was the first time someone had been supportive and understood what I was going through.”

Brett had been unable to talk, was full of manic energy, would not

make eye contact, and sat in the corner of the room spinning a wheel on a

toy train when his mother tried to catch his attention.

“I can’t tell you how many times I ran out of a supermarket in tears

because Brett was having a tantrum and was so distressed he would not calm

down,” she said.

A NAS leaflet educated her on how to teach Brett to point and to make

eye contact, two instinctive skills that are the building blocks of speech.

This enabled Brett to learn to talk.

“The information from the charity was invaluable, they also put me in

touch with their support group, which taught me how to fight for the support

Brett needed,” she said.

“Parents still have to fight for everything they get, which I think is

wrong. But I am fortunate. With all the help I got, Brett is now a joy.”

The money from the Times Appeal will be spent on the helpline called

by Ms Farrell, with just £100 paying for 12 callers to get through and

receive advice. Another scheme that will benefit from the appeal is the NAS’

s unique befriending service, in which volunteers befriend families for a

year.

Prospects, the first job agency specifically designed to help adults

with autism find work, will receive funds to help more autistic adults into

employment.

And among the charity’s six specialist schools that will receive vital

funds is the Helen Allison school in Kent, named after the charity’s founder. Copyright 2002 Times Newspapers Ltd.

* * *

 

Children’s Charity Criticises Global Immunisation Initiative

[BMJ 2002;324:129, 19 January]

http://bmj.com/cgi/content/full/324/7330/129

Fiona Fleck, Geneva A global initiative that seeks to save millions of

children’s lives by immunisation is in danger of saddling the world’s poorest countries with expensive vaccine regimes they cannot afford and perhaps do not need, a new study has found.

The study, conducted by the UK charity Save the Children and the

London School of Hygiene and Tropical Medicine, criticised the Global

Alliance for Vaccines and Immunisations (GAVI) for including managers from

pharmaceutical companies on its governing board, saying that this created a

potential conflict of interest.

“GAVI needs to ensure that it can focus on the most appropriate assistance to an immunisation system without the risk of commercial, product-oriented pressure,” the UK charity said in a statement.

The alliance, based on partnership between the public and private

sectors, was launched in 1999 to combat falling immunisation levels by

providing vaccines to 74 of the world’s poorest countries. Dubbed the

“billion dollar fund” after a contribution of $750m (£517m;  839m) from

Microsoft’s founder and chief executive, Bill Gates, it seeks to achieve

this by incorporating new vaccines into national health systems while promoting existing immunisation programmes.

The study, reported on Tuesday in Geneva, was based on research

conducted in Mozambique, Ghana, Lesotho, and Tanzania. It concluded that

although the initiative had succeeded in raising the profile of immunisation

programmes in developing countries, it had failed to ensure that additional

resources were provided to countries with weak health systems before they

take on expensive new vaccines.

It warned that raising poor countries’ awareness of immunisation

programmes without detailed advice and financial support in implementing

such schemes could end up creating markets for costly new vaccines while

doing little to tackle the biggest killer diseases.

The report said, for example, that refrigerators for storing vaccines

were poorly maintained and often broke down. It also said that Ghana was

given only 10 days to decide whether to accept a new high tech vaccine for

hepatitis B without any evidence that this was actually needed a decision

that more than doubled the cost of the country’s immunisation programme.

It concluded that although the funding gap would initially be covered

by the alliance, the long term sustainability of the programme was in question.

“Due to lack of funding and the added burden of the HIV crisis, many

countries’ health systems are on the verge of complete and utter collapse,”

said Regina Keith, a senior health adviser at Save the Children in the United Kingdom.

“Money must be spent on the upkeep of equipment, as well as on

training and paying the salaries of health workers. If the billion dollar

fund goes bust, developing countries will be left footing the bill for

costly new vaccines that are of no use to the children whose lives they are

meant to save,” she said.

 

 

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* * *

 

Hard-hitting Ads Aim To Heighten Awareness

[By Helen Rumbelow, from the Times Christmas Appeal.]

http://www.thetimes.co.uk/article/0,,2-2002029260,00.html

A small boy shown banging his head violently against a wall is the

subject of a series of television advertisements marking the National

Autistic Society’s 40^th anniversary. “Now you know what it’s like trying to

understand autism,” say the adverts, which are too disturbing to be shown

before the 9pm watershed.

The campaign, starting this week and supported by celebrities such as

Katie Derham, the newsreader, Joanna Lumley and Esther Rantzen, aims to

raise money and awareness of the condition. There are currently only 4,000

specialist places for the 25,000 autistic children who need them, and the

diagnosis of autism is on the increase. No one knows for certain how many

people in Britain have autism, and a third of local authorities do not know

how many autistic children are in their care.

Figures suggest that autistic people are more than five times more

likely than average to attempt suicide; the strain on their families is

depressing. Since autism was only routinely diagnosed in the last three

decades, no one has made provision for the half a million autistic people

when their parents are too old to care for them.

To address these problems the charity’s campaign aims to double the

numbers of callers able to get through to the helpline to 40,000 a year, and

train an extra 40 practitioners in its EarlyBird programme, which assists

the parents of newly diagnosed children.

The charity also wants to create 40 new places for autistic children

at its specialist schools.

Those wishing to donate or get more information from the charity can

contact it through its website, www.nas.org.uk, or its helpline, 0870

6008585, from Monday to Friday, 10am to 4pm. Copyright 2002 Times Newspapers

Ltd.

* * *

 

Leading Article: A Great Society

[Times readers have responded generously to our appeal.]

http://www.thetimes.co.uk/article/0,,56-2002029264,00.html

You cannot catch autism and you are in no danger of dying unexpectedly

from it. You do not meet articulate young sufferers from autism because

their condition prevents most autistics from communicating easily with the

outside world. There is no hope of a simple cure and mere understanding of

the condition eludes most people. All these things mean that autism is not a

fashionable cause or one for which it is easy for campaigners to raise money.

The response of readers of The Times to our Christmas Appeal has

therefore been particularly gratifying. The National Autistic Society is to

receive £150,000, twice what it was expecting. This generosity will help it

to buy essential equipment for its schools, it will improve the life of

desperately ill children and bring relief to parents who feel very much

alone. Yet while these are the immediate results of the appeal, they are not

the only positive outcomes.

Those who work with autistic people believe that increasing awareness

of the condition is almost as important as raising money. An autistic child

stands a better chance in life the earlier the condition is diagnosed. The

more parents learn to recognise the signs of autism, the greater the

probability that they will seek help at the right time. Beyond the

possibilities of treatment, the lives of autisitic people can be greatly

improved by the understanding of others. Many who suffer from the condition

are afflicted by a relatively mild form of it, known as Asperger’s syndrome.

Some of these people struggle on in life, ridiculed by others and sometimes

bullied, finding it difficult to keep a job or a friend. Many sees them as

misfits, perhaps being deliberately contrary. They are cast out by the

society of which they try to be a part, and while their autism may be milder

than others, their suffering is nearly as great. With greater awareness may

come greater sensitivity and compassion.

A Christmas Appeal by its very nature comes to an end. The work of the

National Autistic Society, naturally, carries on. It is important that this

work is not forgotten or ignored. It was not just its cause that recommended

the society to this newpaper or encouraged such a response from our readers,

it was the society itself. A highly professional body created by the most

committed volunteers, it yesterday celebrated its 40^th birthday. Since its

birth it has been a tower of strength for many thousands who need it desperately. Long may it continue to be so.

* * *

 

Reader’s Posts

We are looking for an individual, college student, or therapist, willing to

come and work with our 4 year son with PDD in the evening once or twice a

week. He in non agressive and loves to give hugs and kisses. We are in the

West Fargo area of North Dakota. If interested please email me at

The Mission of the Autism Society of America, Oakland County Chapter is to

foster knowledge, promote awareness, provide information and opportunities

related to educational, medical, social and life skills issues for families

and individuals with autism spectrum disorders, and promote awareness to the

general public in and around Oakland County, Michigan.

I am looking for shool information and parents advise for the Quad Cities

area in Illinios.  I have a 4 year old son with Autism we are looking for

I live in the Seattle, WA area and am interested in starting a live

and/oremail reading group.  I am open to suggestions, but currently, I am

thinking we could read both non-fiction and fiction books related to autism,

inclusion, etc.  Please email me if you have any interest in either an

Anyone else’s autistic child participate in Kaiser/UCLA’s attenuated polio

In San Diego, ProSpeech presents~SWIM Speech and Language, using Water

Integrated Play, & Movement.  A pool is a specialized sensory environment

where many autistic children feel most comfortable, attentive, and ready to

learn. We are licensed Speech Pathologists who teach language and pragmatic

therapy during fun, aquatic activities. Call 1-619-574-8181 Deirdre Newcomer

 

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