Stars shine for Autism

[mossgrove]

I thought I would post this .link because it neatly encapsulates why I have mixed feelings about the NAS.

 

http://www.nas.org.uk/nas/jsp/polopoly.jsp?d=253&a=8625

 

I have to acknowledge that it is good that so many people have given their time, and lots of money has been raised.

 

What leave me feeling uncomfortable is that this is so far removed from people with Autism and their daily lives that it seems completely irrelevant, and almost counter-productive.

 

What does everyone else think. Have I got a point or am I just being a miserable old fart?

 

Simon

[lorryw]

Hello Simon

No you arnt a miserable old fart. I feel exactly the same about the NAS and their annual dos. It doesnt raise Autism awareness and I always feel any funds raised must be offset by the huge costs involved.

Lorainexx

[DaisyProudfoot]

So was it in any of the papers then?....or just the NAS own website?

[mossgrove]

Not sure, I followed a link on something else to the NAS website and it was on the front page.

 

Simon

[oracle]

I think the thing is that we are all expected to join NAS and when you are a member then you find out about these things via their newsletters.

 

I share your feelings of being uncomfortable Simon, but maybe not for the same reasons? I know that NAS has lots to offer but I can't help feeling - rightly or wrongly - that the bulk of their fund raising goes into keeping their schools open. Terrific - these schools are wonderful but they are certainly meeting the needs of the few and not the many. That must make me sound a very nasty person, and I in no way am implying that the children who do attend these schools do not need to be having their needs met by NAS. But do our children not deserve this to?

 

I rang the NAS help line two days ago because of a problem that a parent in our local group is having. The response was an automated message stating that the line was closed until 3rd January. The point is that this line is, as far as I am aware, manned by volunteers anyway, so yes they need a break, but what happens to the all to real problems in the meantime? I too am a volunteer and this week alone I have had so many calls that my Husband and Son are now complaining seriously that I am spending too much time dealing with other peoples problems. They are right I know that I am. But who else is there?

 

Even if we join NAS will they be able to help us on a daily basis in the way that we need helping - I think not - because the top layer of people are so far removed from people with Autism and their daily lives that it seems completely irrelevant, and almost counter-productive.

 

Sorry to rant but I am feeling under real pressure myself at the moment.

 

Carole

[call me jaded]

This is what I would call an extension of a 'Charity Ball': the rich and famous paying a lot of money to be entertained very well and at the same time 'doing their bit' for charity.

 

These people are going to spend a lot for a night out anyway, if it raises money for charity then I suppose that makes it slightly better than making the owner of Chez Gerrard that much richer.

[baddad]

Repeating myself, I know, but the NAS is so high profile now that it's lost any 'bite' it ever had... Gotta keep all them politicians happy, all that goodwill flowing... NOT a good idea to go rocking the boat, then, is it?

Give me a smaller dog with a good strong set of teeth any day of the week...

L&P

BD

[madmooch]

Give me a smaller dog with a good strong set of teeth any day of the week.....

 

I can....... Carole

 

No offence intended Carole

 

Madmooch

[Kathryn]

I'm with you Simon, and Carole. I've had this niggling feeling since I joined and got their magazine which seems to be full of smiling men in suits and fundraising jaunts to other countries, as well as articles about their schools which as Carole says benefit only a few.

 

There seems to be very little concern about those at the higher functioning end, or the battles with the education system which parents of such children are inevitably having. I know that good work does go on: I have been helped tremendously by the education helplines, but they are not doing much to raise the profile of these issues. I think you are right Simon, they don't want to rock the boat. A look at their bookshop is very revealing - they don't carry a single title which deals with controversial educational issues.

 

I would like to see them raising funds to ensure there is a specialist AS school in every county and campaigning for more units in mainstream schools, as well as running training courses for educational professionals, awareness campaigns for the general public...etc. They may be doing some of these things but they keep very quiet about it!

[barefoot wend]

Simon

 

I agree. These events are a million miles away from our lives. I don't relate to them at all. Too much glitter and not enough grit.

[Guest flutter]

tis like any charity i think, they have someone in front who is a "professional" at being a md of charity, who know absolutly nothing about siad "complaint". I was a memeber of another charity, for a women condition, fronted by a man, who came form aanother charity, so when he is bored with this one does he move up the ladder to a big one.

All these posh peeps believe they are helpin, cos they dress up a nd raise moneys, but they are not int he real life bit:(

sorry i have ranted,

[oracle]

Give me a smaller dog with a good strong set of teeth any day of the week.....

I can....... Carole 

 

Madmooch - she knows me so well

 

Carole

[Zemanski]

I agree wholeheartedly with the sentiments here although I do have to say they are trainig professionals - me for one - and the course I'm on is very good, very high level and to get my masters at least half of it has to be workbased and hands on. This might be because the course leader is not NAS though and believes that intellectual study is no good without practical experience.

 

personally I've never been tempted to join - there does not seem to be much on offer for me and my family.

 

part of me wouldn't resent them doing these big shows - they do raise an incredible amount of money compared with other methods for much less all round effort - if I could see some benefit, some real proactive support.

 

Zemanski

[Canopus]

I hold a utilarian attitude with an emphasis on useful substance rather than pomp and glory. The way I see events like this is glitzy entertainment for the higher echelons paid for by the struggling masses. I have several criticisms of the NAS and holding events like this is only one of them.

[mandyque]

I agree with the general consensus here about the NAS too. It seems that they don't do a great deal at grass roots level. They mention nothing about whether there were any autistic people at the charity event or what the focus of the fundraising is going to be.

 

I am part of a parent support group at the Daisy Chain Project in Stockton-on-Tees and I see them working like trojans every day to make life better for autistic children and their families and for that I am eternally grateful. Every event they hold to raise funds includes ordinary folk, autistic people, their parents and carers and they always have a funding goal set so if anyone asks 'what is my donation going to help pay for?' they can immediately say 'it is going to go towards the building of the playbarn/respite facility/farm/support group/holiday play sessions etc etc. People can even choose if they wish, to put their money into a particular 'pot' to fund a part of the project of their choosing, for instance through the animal sponsorship scheme.

 

I don't see these efforts from the NAS. I'm not saying they never do any good for anyone, but I don't know of anyone personally who has directly benefitted from an NAS project.

[call me jaded]

Most of their income is spent on the schools and adult services. My son goes to a NAS school, so he directly benefits. There's also the befriending scheme, the helpline, the education advice line, the Early Bird and HELP schemes and the website with all the PARIS stuff on. I know many who have benefitted.

 

I think it's easy to knock them. If they do to seek the views of people with autism, I'm not aware of it, but now they've got me as a parent I'll ask these questions.

[oracle]

There's also the befriending scheme, the helpline, the education advice line, the Early Bird and HELP schemes and the website with all the PARIS stuff on. I know many who have benefitted.

 

I also know many who have benefiited from their services but - and yes there is a but - not only do Authorities buy in training for Early Bird, Early Bird Plus, Help etc and I know these training packages do not come cheap. But everytime a course is delivered to parents, like myself, then the Authority have to pay NAS again. So that means that everytime the training is put to use they pay again and again and again. I personally think that this is dreadful.

 

It means, in my opinion, that NAS are making money from us, at the expesne of our children. I say this because if the Authority did not have to pay to deliver a course then it could be spent on resources and man power in schools to aid our children and their specific needs.

 

As I have said that's just my opinion.

 

Carole

[call me jaded]

I don't think it's immoral myself. Local government can access sources of funding for exactly this kind of thing. If they're leading you to believe that it's coming out of the education budget then that would be immoral.

[mossgrove]

Interesting responses!

 

I am a member of the NAS and have been since we got the first diagnosis for J, and I benefited from the Help! course which was excellent. So I am certainly not anti-NAS, and I have no intention of resigning or anything.

 

I think my unease comes from the fact that their ability to campaign (as opposed top provide services) is hamstrung by the way the NAS are funded with a heavy reliance on celebrity patronage and sponsorship. (For example, the Help! program is funded by Vodaphone). This means they have to work within the establishment and avoid outright opposition to what the Government of the day is doing, even when outright opposition is justified.

 

Simon

[oracle]

No one in our Authority is leading me to believe anything. As I said this is my opinion and I feel no differently about the ABA Programmes that are funded within our Authority. These programmes cost mega bucks. If every parent wanted Authorities to fund such a programme it would never happen. So it does make me just a tad when we have to beg and plead for services for the children who are in mainstream education and even special schools for half decent provision for them. It just goes to spot light what an uneven playing field we are all actually playing on.

 

I do understand Royalties - every singer and songwriter who ever got rich and stayed rich, is helped to stay that way because of their royalties - but the NAS are meant to be a charity are they not

 

Carole

[call me jaded]

I believe the government has responsibility to make provision for those that need it, and I also believe it should not be down to 'charity' to make up for government's lack of provision. The NAS are nothing other than a service provider. It is only right that they are rewarded for the work they do in a business-like manner. The funding does, after all, go towards developing new programmes and all the other areas of support that NAS provides.

 

If we don't go forward in this way, how (for example) will the role of carers ever get the status and compensation it deserves?

 

Actually I am not and never have been a member of NAS. I think I'd better go and join.

[oracle]

If we don't go forward in this way, how (for example) will the role of carers ever get the status and compensation it deserves?

 

The Princess Royal Carers Center has done a marvellous job of raising awareness of Carers. If parents and carers ever need help this is one orginisation that really does pull out all of the stops and yet has managed to remain firmly of the side of those that they represent.

 

I am a member of the Carers Centre and I see just how hard they do work on a shoe string budget.

 

I totally agree that it's up to the Government to supply funding for provision but when you have set yourself up, as NAS have, to provide provision in the shape of schools for ASD children, then you should also be seen to champion the cause of thsoe who are not fortunate enough to have a placement within one of their schools. NAS are really good at sitting on the fecnce.

 

NAS have the ear of those who matter and with that status should come the awarenes that there are issues which really do need addressing - no matter how much you rock the boat?

 

Carole

[call me jaded]

We're obviously poles apart in our views on this Carole, but I don't see NAS as ineffective in their lobbying - they did a great job on ASBOs in Scotland, for instance.

Edited December 17, 2005 by call me jaded

[Lucas]

I am the proud owner of one of only EIGHT leaflets on Asperger's Syndrome published by the NAS in the whole world!

 

I don't mean one of eight versions, editions or revisions. I mean one of ONLY eight. There were eleven to begin with but one Autist ruined one in a botched magic trick and Jane Asher sold hers on eBay which have never been seen again.

 

I may do that with mine, I'll be a trillionaire.

[Kathryn]

By the way the NAS had their AGM a couple of weeks ago. Apparently there was to be a discussion on "inclusion". Does anyone know what transpired? I was toying with the idea of going but find AGM's indescribably boring and I had several hundred more important things to do.

[Mother in Need]

I am the proud owner of one of only EIGHT leaflets on Asperger's Syndrome published by the NAS in the whole world

 

Lucas, why do you say that, I've got 50 or so right here? They only cost a penny each (so heavily subsidised by the NAS) and they have others on different aspects of autism.

[Lucas]

Fifty!!?! Don't tell anyone; you and me will make a mint!

 

My comments stem from the fact that whenever I go anyway to get some service or another, I can make a very valid point by agreeing to the niave and presumptious offer to get me information on AS/Autism. Invariably, the next time I see this person who is trying to be helpful they are somewhat less assertive and apoligise for not being able to dig up much information. I'm usually shown printed-off webpages that I've seen many times before. Official leaflets are rare too.

 

The point this gets across to the person is that my needs are complex and proberley way beyond their means to provide, yet I'm hopeful that they can do some looking around and maybe find someone who can help.

[elaine1]

you miserable old fart you! no honestly i feel the same, theres just too much schmoozing going on isnt there. that photo looks like a who gets there face in first contest!.

 

by the bye does anyone else hate Lesley Garrett lol