National Autistic versus Autism Society

Longman's original point, as he acknowldged, was mistaken as the site he found wasn't real. The real Mencap site doesn't have a huge amount about autism but it does have links that direct people back to NAS. If you search for autism in google then the NAS site gets very good rankings. There is a long standing grumble that NAS doesn't represent adults as well as it could and I don't really have an opinion on that, I don't feel let down or abandoned but I don't need their support really.

It was a fine idea to have a badge to identify someone with autism but there are significant issues. People would have to wear it in enough numbers for other people to start to recognise what it means. I don't feel that there are enough people with autism who want to be marked out like that. Mostly, I believe, we want to go incognito and not to draw attention to the fact. Alternatively, NAS would have to give it enough publicity but this is an enormous and expensive thing to do and the benefits would be marginal, the incidents when it would help are infrequent but traumatic but the educational task to get through to the likes of a night club bouncer is probably beyond the wit of man. Station porters could be made aware of people with learning difficulties or autism and that is a task that NAS could, I would have thought, address. The discussion prompted me to think about wearing an autism awareness badge and I'm afraid that I haven't yet decided to take that particular plunge - I may do in due course. 

Hi 'Socks. What I actually said is that there is no nationally recognised, publicised or supported single emblem. This came about because one unlucky individual had produced an NAS card to bouncers and police, who because they neither recognised nor respected it, made a bad situation much worse, and there's the real problem.

I don't think it's beyond the wit of anyone to understand that a lapel badge can go underneath a lapel, to be turned over at need. Or produce a card, pendant, wrist bracelet or any other means to identify themselves as AS and in need of special consideration and assistance. First, though, one would have to exist.

There is no single resource that can claim to have 100% legitimacy. As is often pointed out, the NAS doesn't represent the needs of diagnosed adults. Given that it was originaly conceived and founded as an advice site BY parents FOR parents, that's hardly surprising. Bob Mod refered to the way we use the chat site now never having been envisaged,but they're looking at that now.

This site has evolved as the prefered discussion group for some of us older AS people, so they'll look at ways to help us with that, and we're still on the (hopefuly) best first stop for newbies and parents. You've given excellent advice, views and opinions to such groups and I know that you appreciate the opportunity to help just as much as I do.

But, and it's the 'but' that Longman is also addressing, there is no single resource that can claim to have 'first' position. I value the NAS above other sites too, and I want the NAS to be IN that first position. I would also like to see a single, publicised emblem that we can produce at need, and know that it will be recognised and respected.

I don't see the two aims as incompatible, quite the reverse. We have no national 'identity' in the public mind. With the support of most, if not all diagnosed AS adults, NAS can claim to be THE representative body. If they then educate the public about an emblem that everyone identifies and understands (means of carrying left to the individual) to be produced at need (need left to the individual to decide) I think that would  be helpful.

Hi CC,

There are autism awareness badges available with the jigsaw logo that would probably attract some sympathy and solidarity from people recognise the logo. This wouldn't mark you out as autistic so it wouldn't have the downside of the "I am disabled" badge that was discussed in the other thread.

I suspect that we, as a group, are particularly difficult to organise or to get some (any?) agreement about the issues we face. It will be particularly unrewarding for anyone to try and help us so in a sense we are our worst enemy. Children, on the other hand, have their parents who will tend to be less individualistic and argumentative and they will be more motivated by the common cause of how to help their children.

I never had any intent of moving on, I'm entirely satsified by having a place to discuss the issues and I'm grateful to NAS that there is this facility. It's the most valuable resource I have used since diagnosis. I suspect that others get very little support elsewhere so we must be careful not to throw the baby out with the bathwater.

This is just my 2p as they say and I don't expect that we will get much concensus, we just aren't made to be agreeable!

We, and by that I mean us AS adults, do not 'own' a website. We do not agree on how to have an identity, I've been personaly derided for suggesting that we have a logo of some sort, simply as a means to identify ourselves at need, with a nationaly publicised and recognised symbol, so we have no common identity, no common identifier, and from what I've seen, most people reading this can't see any need for one.

I would remind you all - united we stand, divided we fall. There is no organisation that unites us, and all I keep hearing is carping criticism of the results of this. What I don't see is any willingness on the part of AS people to join together under a single banner, so that we can effectively say 'We speak for autistic people' and become the go-to resource. We can leave it to others, and maybe they will, maybe they won't, or we can ask the NAS to consider helping us to do something for ourselves. Goodness knows we've alluded to it enough.

It's all very well picking away at minutiae like this, it uses lots of energy and words and achieves exactly nothing. I don't care WHO collects money, or what they use it for, because if one or two people benefit from it, that's the charitable purpose fulfilled. I'm certainly not convinced that the NAS is willing to take on this role of representing National Adult Autistic Society - it was started BY parents FOR parents, it's us who, in a sense, are hijacking this purpose and indeed Bob Mod's post before Christmas pointed out this very issue.

The original intent was that we would 'move on' to other websites more suited to our chats. By staying here, we've managed to offend a lot of people with some of our discussions - people who weren't intended to be part of those discussions when these pages were conceived by the NAS. Bless Bob for saying that the NAS is reconsidering its' role, because of this very evolution of the site, when it simply wasn't foreseen or expected.

So, are we going to get together and get an identity and a united front, or will we keep this up? It's not like we've got anywhere else to go...

Over to you, family, what do you say?

I agree very much that NAS seems to support parents a lot more than adults with Autism. I know it all about government funding but it winds me up that only children have autism. When we get to adulthood there is nothing. Even less if like many of us, we are only diagnosed late 40's.  Just one little piece in last month journal about autism in penisoners and the need to make decisions about changes of being old. 

Very little is for adults with autism, learning about autism for themselves. All the books and everything is geared for parents or children or teens.

But MenCap have the right to support Autism too. In Britain we are allowed to have more than one charity supporting the cause.  If people are thinking they are giving to one charity rather than the other then that needs to be addressed. But how do we know if there is a mix up going on. For me it Clear Mencap is Mencap and didn't think they were just Autism. I thought they were Mentally Handicapped. Which isn't Autism as the mintue I said yes to an assessment for Aspergers which turned out to be Autism, I was removed from the Mental Health Register as such.

Mencap do ought to be a bit clearer who their services are for but everyone is entilted to fund so long as they are being clear who they are funding for.  Perhaps Autism is the current buzzword that gets people giving their cash? 

Hi longman

Out of curiosity I just searched google for "NAS" and "National Autism Society" and in first 4 pages, most of the non advertised links are for this web site or another "valid" autism site

There was a advertised link for the autism site you mentioned, at bottom of first page. It seems the owner of the domain is paying google for the advertised link, so google gives them a much higher rating to include in first few pages.

I am a web developer, there are ways you can improve your rating in google. I never really mastered it, but a couple of people I have worked with were able to get the rating right at the first link on the first page without advertising.

I know part of that process is to get the link you want to push up the rankings, on another site well known by google.

I would suggest removing the link from your original post, as unintentionally this could push up the rating for the mencap site.

To confuse matters further, looks like www.mencap.org.uk is a valid site.

Someone has registered the same name without uk and trying to sell it on

Random

Thanks R'socks, it certainly is a squatter - more visible than NAS is.

The trouble with NAS is it originated as, and largely still is, a parents' group, and it has that perspective on things.

Adults with problems didn't make better use of all the help given to them as children and failed to grow out of it. We are just an irksome drain on resources better spent indoctrinating more children that if you do all the right things you'll grow out of it.

That's why transition has given them such a fright....all those children clearly not growing out of it.

I agree with Electra. In fact, I started to say so this morning but my day interfered...

We can't even agree amongst us on a common language, so it's disingenuous to suppose that our 'favourite' website is the 'only' one. Personaly, I'd like to make the NAS our 'go to' resource, forum and representation but we can't even agree amongst us on any of that. Even when I pointed out that we don't have a recognisable way to identify ourselves at need, I was pooh-poohed. I think that some people prefer to bleat about things than to make any effort to improve them.

We recently got some agreement from NAS that we AS people actually know a bit about it. As it stands, as many of us have said, it singularly fails to reprtesent us in some important ways, but if we don't get involved to help inform the necessary changes, we have nothing to complain about. That leaves anyone, doing anything that 'supports' autism, free to collect money for their charitable aims. Not one of them can claim to be the definitive organisation, but nor can we claim that they're not.

That URL is nothing to do with mencap. It's a domain name squatter or whatever the term is.

I take your point about the confusion with the names Longman. But don't they have as much right to say they represent autistic people as the NAS?

I frequently bristle with indignation at the skewed idea of autism that people have and then they say 'but I read it on the NAS website, it must be right'. I don't doubt that carers find the site of use but the NAS don't represent us or paint an accurate picture of us to the world.