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Update Autism Campaign - Carers UK Forum

Update Autism Campaign

For issues specific to autism / Asperger Syndrome.
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Dear Rosemary

A huge thank you to all of our supporters who have been involved in the think differently about autism campaign so far!

Nearly 30,000 people have visited our campaign website since October, with over 7,000 of you signing our online petition calling on the UK government to show its commitment to raising awareness of autism by ratifying the UN Convention on the Rights of Persons with Disabilities. It’s now likely that this will happen by the end of the year.

We’ve had a great response to our campaign films, with lots of people watching them on the website, on YouTube and on MySpace. This is the first time we’ve used social networking sites in our campaigning and it’s something we’ll continue to do in the future. For the 2,500 of you who have also joined our Facebook group, we’ll have our very own application launching soon!

Media coverage has also helped us to raise awareness; from features on GMTV and BBC Breakfast, to articles in the Daily Mail, the Observer and the Scotsman. Our photo exhibition exploring how people with autism see the world, has toured venues in London, Manchester, Neath and Cardiff and will be going to Glasgow next month.

Now we want to build on this strong start and increased awareness to launch the second phase of the think differently about autism campaign, I Exist.

Autism is a lifelong condition and children with autism grow up to become adults with autism. That’s why, having launched a campaign to make school make sense for every child with autism, I Exist is about campaigning for better services and support for adults.

We carried out the biggest ever survey of adults with autism and their carers in the UK and found that most are isolated and ignored. A lack of recognition that autism affects adults, a lack of understanding of people’s needs, and a lack of suitable services means that most adults are prevented from realising their true potential. With your help we can change this.

The I Exist phase of our campaign will launch on 5 February 2008, when we will write to you again with information on how to get involved in changing the lives of adults with autism for the better. We will also be launching an updated look for www.think-differently.org.uk with new opportunities to take part in the campaign.

We hope that as many of you as possible will take action and help bring about the changes needed to transform the lives of adults with autism.

Many thanks once again for your support,

.
Lee Scott MP for Ilford North and member of the House of Commons Select Committee on Health created parliamentary history when he recently introduced his Autism Bill.

http://www.24dash.com/news/Communities/ ... utism-Bill

There were 56 members of parliament present in the chamber - to support him and to support parents, carers and people with autism.

Autism is a neuro-developmental disorder, over 500,000 people in the United Kingdom are on the Autism Spectrum and over 90,000 children have autism.

According to UK Researchers 1 in 100 children may have autism.

Scott is calling for greater support and for ring fenced funding.

His Autism Bill was passed unopposed and goes on to a second reading on the 9th of May.

Scott has consistently spoken up for autism, championing the cause in the House of Commons.

He is the local MP of Ivan Corea, head of the Autism Awareness Campaign who recently called for an 'Autism Day' in parliament.

Ivan said: “I welcome Lee Scott's important Autism Bill.

“This is history in the making and we do need proper directed funding for public services for parents, carers and people with autism and Asperger's Syndrome.

“I urge Her Majesty's Government to back and support Lee Scott's Autism Bill.â€Â
Whilst I think that Autism awareness is exceptionally important, both in Education and Social fields, I cannot support the National Autistic Society whilst they are supporting the drive for a cure for Autism.
Hi Eva and welcome to the forum.

I've been a member of the NAS for years and well remember the criticism levelled against the NAS for saying there is no cure and not looking into the possibilities of a cure.

Whilst I am incredibly sceptical about the prospects, surely there is no reason not to look for the causes in order to find a realistic prospect of at least ameliorating the effects of autism?
Thank you Charles.
Perhaps my perceptions are different Charles, I have a father with Aspergers, my husband and two of my four children have Asperger's syndrome. So far with everything I have read, I have seen no differentiation regarding a cure. In this house we regard the AS as a gift. Obviously there are problems, some of them serious, some of them not so serious, eg sleeping difficulties and social differences can be serious, but literal interpretation, particularly when Mum (me) says things like "I'm just going to hop in the bath" - cue sniggers all round! My husband needs 24 hour care, he didn't however get any mark below a first at uni. My son is doing four GCSEs next year, two years early. He also plays rugger and has a full and fun life. We have ensured that it is this way. He doesn't need a cure, neither did my G.P. father. I think we have a lot to lose by finding a cure for Asperger's syndrome in particular, and I resent the way everyone is expected to conform to a neurotypical viewpoint.
I am of course willing to listen to alternative views.
Eva.
The use of the word cure is emotive, which doesn't help. I have met a lot of people with autism spectrum disorders over the years: some would be desperate for a "cure". Others - like those in your family - don't feel the need for one. Still others don't have the concept of "cure" in their vocabulary.

Not for me to judge who's right - but the difficulty any charity has is to try to meet the needs of all of its constituents. How the NAS, CUK or any other charity/special interest group can possibly do that beats me! Image
I agree Charles. The problems I forsee however, concern me. I rather feel that once (if) a cure is available, there will be no choices and no scope for neurodiversity. Abortion for those predicted to have autism will be forced and drug therapy for those already here will be enforced. It seems a bleak view but in my mind, a realistic one.
Eva.
You're right about the abortion issue. It already happens with Down Syndrome in that parents are told the worst possible case scenario - effectively forcing them to "choose" to end the pregnancy. Choice is fine, but when the test is so unreliable that health foetuses are sometimes removed, the tactics of the medical profession should come under more scrutiny.

With asd, there is such a wide continuum that it is very likely impossible to say how someone will be affected - so we could lose another Einstein (if the pundits are right about him). I doubt that drug therapy could be enforced legally, but again parents would be put under considerable pressure - e.g. from doctors in the early stages, then the withdrawal of benefits because there is a cure and you're deliberately making your child ill...etc., etc.

As always, it's a minefield.
My daughter is 21 and suffers from Autism my daughter has severe Autism and is not the level of someone with aspergers or high functioning autism and yes l would love there to be a cure l love my daughter dearly and no if l had known before l wouldnt have done anything about it but not everyone is able to deal with any kind of disability the world is full of people who just cant cope l think it all depends on the level of Autism my daughter is dependent
on me for most things in her daily life including toileting and l would love something to make her life easier she is happy enough as she has never known anything different from a caring point of veiw l will care for my daughter for the rest of my life but she is going to need that level of care for the rest of her life and l worry about that side of it as l wont alwasy be here so anything that they came up with to help my daughter l would go for
Jeanxx
My daughter is 21 and suffers from Autism my daughter has severe Autism and is not the level of someone with aspergers or high functioning autism and yes l would love there to be a cure l love my daughter dearly and no if l had known before l wouldnt have done anything about it but not everyone is able to deal with any kind of disability the world is full of people who just cant cope l think it all depends on the level of Autism my daughter is dependent
on me for most things in her daily life including toileting and l would love something to make her life easier she is happy enough as she has never known anything different from a caring point of veiw l will care for my daughter for the rest of my life but she is going to need that level of care for the rest of her life and l worry about that side of it as l wont alwasy be here so anything that they came up with to help my daughter l would go for
Jeanxx
Jean,
I appreciate your point of view and if I had a classically autistic child I may well feel very different. The point I made to Charles is that so far, there appears to have been no differentiation. When the NAS differentiate I may well support you, but at the moment, despite difficulties, I cannot support a cure.
Eva.
xx