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phasmid

NAS

How many of us fall into one of the following  

44 members have voted

  1. 1. How many of us fall into one of the following

    • Current NAS member - & happy with the support received from them
      6
    • Current NAS member - Unhappy with the support received from them
      7
    • Former NAS member - membership just lapsed
      0
    • Former NAS member - membership terminated by choice
      1
    • Never joined
      29
    • Other
      1


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Ive contacted them several times over the years, usually at the point of desperation and the words chocolate teapot spring to mind!!

love Lorainexx

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Never joined yet myself, kept meaning to, but heard a lot of similar stories about them not being very good when it comes to support. Get most of my support through the fantastic support group in my area.

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Joined recently and had excellent help from the Ed advice lady via emails and telephone conversation. I actually found that once I had made contact, she was easier to keep in touch with and responded quicker than IPSEA. Saying that, the IPSEA advice was more effective!!

 

Sam

x

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I voted for: Current NAS member - & happy with the support received from them; I'm a member of my local NAS branch.

 

In the past I've used the NAS advocacy for education service and found it to be very helpful.

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To be very honest I think that NAS do offer some really good services. I think the people who man the phone lines are VERY clued up and know their subject - not surprising really as most of them, if not all, are parents. I have heard excellent reports about their advocacy service and if you are going to ANY important appeal or tribunal then you could certainly do a lot worse than taking NAS with you. This is because most Authorities will probably feel a little :notworthy: if NAS are there. Their title says it all NATIONAL Autistic Society.

 

I do however question the way NAS sit on the fence when there are major issues being debated or discussed. That is when I question whom they are in fact there to serve - their members of their funders - there should be no question to answer, as it should always be their members. However I do feel that this is always the case. I also feel that they do not quite understand Aspergers Syndrome and how it is a full-blown form of autism. I personally believe that we must stop grading ASD. It?s doing no one any favours. If you have a dx then you have the full triad and that should be enough. I am far from happy with their information about AS and I do not think that they are pro-active enough when it come to speaking out about it.

 

Maybe the problem lies in the fact that the people who are speaking out are paid employees (I am in no way implying that these employees are not worthy people) but they do not and can never speak with the passion of someone who lives with ASD. That is why I actually admire Virginia Bovell (PACE) very much. Virginia speaks and also writes with great passion about ASD because she lives with it. Far too many people working for NAS are now coming from a corporate business background. While this is probably what is needed to run a City Corporation, is it what is needed to run a Society whose aim is to support and champion the cause for 1000,s of people, parents and cares who live with autism? Yes there is a place for the Corporate Business Men but the people speaking out need to have fire in their belly. Quite few people here I am sure are more than up for the job.

 

Sorry Phasmid rant over.

 

Carole

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I recently had the support of NAS Tribunal support service and my case worker was a fantastic lady.

 

However, I do have a problem with NAS and took issue with them several months ago about how far removed they are from Autism and how close they are to politicians. I also made it known that I did not consider that the view of the mainstream was represented.

 

They promised that they would keep me posted and work in tandem with me to try and gather information that was not so selective.

 

Despite reminding them a number of times ------- big fat zero with the liaison. I was told by them that they like to 'nurture' their relationships with the politicians and it looks like the politicians are their best friends and they do not want to hear from us at ground level.

:(

Best wishes

 

HelenL

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I'm not sure how to vote here. I had wonderful support from the education advocacy helpline this time last year - from someone who obviously knew all the issues. I was also well supported by the tribunal helpline and have nothing but praise for this side of things.

 

However, having recently joined - I think I have to agree with you Carole. I don't think they are vocal enough in speaking out for people with AS. Their main function seems to be on fundraising - the magazine is full of the smiling faces of (mostly NT) people who have run this marathon or climbed that mountain. For what exactly? One of their main roles should be to inform and educate professionals and lay people about ASD's, but they are failing to do this. Nobody should be able to say they don't know what Asperger syndrome is. But people still don't understand - and what little information they have is gleaned from "Curious incident.." or the Jackson family, who have probably done more than the entire NAS to bring ASD into the public consciousness.

 

The NAS could be doing a lot more. If you go to them for information they are superb - the website is excellent. But I feel they need to be proactive in getting the information out to the rest of the world.

 

We don't have a local branch in our area. There are a couple of independent groups.

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I havent contacted them direct - hense 'i never joined'.

 

I'm in Hampshire, but on the borders of both Surrey and Berkshire... :wacko:

 

I'm told Hant one is not so helpful - Berks and Surrey better. I only really go to them for a nosey around the sites - didnt think of contacting them for help. x

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There has always been a tendency not to join groups ! a lot of us haven't the time either. Over the last few years I've noticed many who do find the net a very good way of collating info, forming freindships, and gaining worthwhile advice. I think a change is needed to reflect the online community view, and lesser emphasis put on small groups of half a dozen or so people working in isolation somewhere whom the system prefers to talk to !

 

A few years ago just THREE people gave the entire south welsh view for the deaf on TV access, because they were a 'group' 100s who wrote in are ignored ! At any given time many dedicated sites like this can command 30 or 40 votes in a day, which is very often 4 or 5 TIMES what a small group can muster, in a month. The reasons people are disenchanted with these groups is because they see them isolated from the system or turning INTO it.

 

If the government accepted an online vote, we'd see changes a lot quicker. System providors seem to prefer using the computer too. We all have a pretty good idea what we think is perhaps the primary way forward to helping our children, time people took notice, regardless how we make that known. No group membership, no voice ? not a way to run things is it ? If a group or system is providing a service, this should make no difference to the people who use it, members or not, who should be able to question or challenge it.

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This is my first post so hello everyone. I am a committee member of our local NAS group. All of us who run the group are first and foremost parents of children or young adults with ASD and have all the same crises and problems as any other carers. In addition we give up a lot of our free time to run the group and as well as offering telephone support have got a number of local respite and support services running which are now funded by the local authority.

 

This is a huge commitment for us, but the NAS was initially set up by parents and on a local level at least, is still run by parents. If people are not willing to join up, set up new groups or participate in ones already running then it will not survive. All local groups receive some practical advice from the NAS but have to be self funding, yet local groups can often offer more specific advice than the NAS hotlines etc as they know how local services run and who to contact etc.

 

So I would suggest that you try your local group if there is one, but at the same time remember that those running it are almost certainly unpaid volunteers, squeezing it in to busy lives and although we do try to help we aren't perfect!

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Like many things, NAS local groups are only as good as the people that run them, hence they range from incredibly active and well-attended to existing in name only.

 

The NAS centrally seem to take a fairly hands-off attitude to local groups which has advantages and disadvantages.

 

Simon

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Current NAS member, but as I've never asked for support, I can't say either way!...

 

Oh hang on a minute, I've just remembered, I did ask about attending one of there, you've just been dx sessions and never heard anything!

 

 

 

tizz

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although I've downloaded info from their site before I have only rung them once and I was also advised to contact IPSEA. Lady on the phone was very sympathetic though. I am a current member

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Am a NAS member and for my sins a committee member of local Nas group.Never been on a committe in my life and to be honest have frequently slatted those who are. But I felt that if I didnt join I couldnt criticise the lack of local support. You cant just expect it to come to you. We are a fledgling group, just feeling our way. We are all parents or carers of ASd children/adults. We have all felt alone and just wanted to help those who still need advice and support. We arent perfect but we do care. The Nas do send a local rep who I have to say is v helpful. My only criticism is that we get so little money from the NAS. I have to admit at one meeting we did discuss whether or not to be affiliated. We have decided at present to remain so. It is a personal commitment and I have a busy life. Before you criticise your local group think about those involved. They are just parents or carers just trying to make a difference in whatever small way and meet others in a similar situation. We openly accept new committe members. The more the merrier - it lightens our load.

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