the NAS has no sting in its tail

Sounds like the NAS is just another MAZE organisation for autistic people to get lost in.

I've been trying to get help on an education issue for about a month now. It states on my enquiry that it's an education issue (it asks you what your enquiry is about) and I was referred to welfare rights. I've still not had any advice. It's taken someone a month from the wrong department to get back to me.

I spoke to a friend (who is on the spectrum) who said that NAS is fine if you're a parent of a child on the spectrum; but not if you're an adult on the spectrum.

I was going to fundraise for NAS next year. Looks like that's not going to happen now.

1 million Brazilians seem to know the answer. Britain has forgotten it had the British Standard. I am lost the system is corrupt. By corruption, I don't mean corrupt in the financial or illegally corrupt. By corruption, I mean the balance is tilted by influence and power which rigs a system to benefit a political will and agenda not suited to the greater good.

Longman as usual, you are right on what you are saying, but when did my country become a them and us environment ? or has it always been, I've just realised late on.

People with autism, aka ME !  don't actually wish to fight anyone, they just wish to fix things, to make peoples lifes better all round. We don't have the emotional energy to be stirring up trouble, but there is a part of our condition which seems to hold onto points of principle, integrity which can not be bought and can see system framework which are unethical and unfair.

We play by the rules, but the rules are shapeshifting to suit a core few. Britannia rules the waves, but the great ship is sinking ! Everything, I have been told is true by society, is turning out to be a lie. All these organisations, governments, councils, institutes, charities are corrupt by manipulating there own system and rules to suit there boards and agenda's and when I am involved in any of these systems, I see it so clearly because I am confused and looking to understand them. I just comes down to a dodgy edge, a circle of in the know people, a blacklist and favour list and so sort of rigged control with gives a corrupt advantage.

Basically the world is a s*** and autism is blessing, you get not to join them by the Grace of Autism.

Longman thank you again for all your comments, I enjoy your in sights.

Bear in mind though, autismtwo, that most of these concerns are affecting everybody, not just people on the autistic spectrum.

A lot of charities are being hit. There is evidence that the emails of activists for disabled groups are targetted by the security services as being the same as political subversion. Now give some thought to that one. And even posting on here could be getting some of us listed (even if not our true identities).

Funding has dropped due to the way the lottery is used, and the recession. Some charities use chuggers - aggressive street marketing of regular direct debit payments to charities, which having upset the public, has meant heavy constraints. I'm not aware of NAS using chuggers, thankfully, but they may better appreciate the impact of a chugger on someone with autism. 

Councils have cut back on the money made available to charities, and the government is making further cuts on the money they pay to councils which will further affect what councils can allocate to charities in their budgets.

The answer is to lobby. But that gets you in to trouble and noticed adversely by the authorities. Especially so if your dialogue is affected by autism such that language and perseveration offends. It may not be a good idea for most individuals on the spectrum to lobby for reason of clarity of expression, yet clearly for anything to happen, the voice the Government needs to hear is that of adults on the spectrum.

When NAS does a survey they include statements from carers on behalf as well as people on the spectrum.

Perhaps if NAS gave more advice on individual lobbyimng, thast would help raise the profile. They do give some advice, and things like letter templates related to campaigns. But we need to make it possible for people on the spectrum to make their needs known, or for people to do so on their behalf.

Additional to campaigns, I chased my previous local authority independently to get responses regarding adult autism and other campaigns. I kept NAS informed. I have written to MPs backing up campaigns.

However I do have decades of lobbying experience behind me, and a lot of committee work, and I have (mostly) reigned in my AS superlatives, and I can express things fairly clearly and concisely (rather than too bluntly). Not everyone can.

With children and teenagers on the spectrum, parents groups have formed very effective lobbying voices across the country, and really made a difference. But they tend to stop at transition (even though the children and teenagers of many of their members are now adults).

However something clearly has to be done to emancipate adults on the autistic spectrum. 

It cannot work just as NAS on its own. We need to find better mechanisms for adults on the spectrum to be heard.

Longman, thank you for the reply and understanding my frustration and sharing similar concerns. I have made Enemy number one ,, the NAS,, you are probably right there. I take the title of the organisation NATIONAL AUTISTIC SOCIETY literal and look for provision which is not there. It is like opening up a tin of beans and finding there is no beans in the can.

quote "But it isn't down to NAS to resolve issues like primary care and local authorities".. so who is the regulator ? The Untouchables.

Where there is no feed back loop into the systems, gap knowledge,,, society fails, people die and Sophia's crown will fall with us all.

quote  crystal12 " I've noticed since I started coming on this site that contributors with Aspergers/HFA are vocal in their disappointment regarding how the nas represents their interests. I think this needs to be taken on board by the charity + acted upon"

Crystal that is a lovely reply, I am glad that the net caught your son and your experience has been mostly good, you sound like a clued upped mother. So in sense what I pick up from your post, that there may be resource allocation politics going on and in sense the NAS is working but not working, depending on which part of the spectrum, demographic and age group.

I do think that there is an adult representation gap in the NAS and think that just dealing with primary care of autistic children needs makes the NAS only a soft option policy organisation. Not wishing to upset the Autism Apple Funding Cart.

The NAS never challenge(advocate) the establishment on behalf of the autistic community, so they are not a true voice of the autistic community, it is like they have been paid off with a huge amount of money as hush money to work towards a governmental agenda, not an independant agenda,, to me that is against the spirit of self determination of the autism community and they are speaking with fork tongue, pretending they are with the community but in reality they are a paid proxy of the establishment. NOT GOOD LONG-TERM OF THE AUTISM COMMUNITY, as in my case politically adult autism provision is near non - existant ! But it is okay the local authorities have failed to meet any of the targets years ago, but give them more time.... SHAME ON YOU NAS AND privy councils !!

And I can't help moaning because it is not right and effects my every day life, but I am powerless to do anything about it, the NT's autistic children have been mostly catered for, so they know the out cry will be limited,, to a few voices, which alex can take care off.

My understanding of NAS is that it depends on funds....its a charity. I feel awkward when I email to ask a question because I've potentially used a chunk of any donation I make on my own issues. So I'm glad of this forum.

To have a sting in the tail NAS would need more funds. The current finding comes I guess from parents in parents' groups and professionals. The sublime irony is that because so many adults on the spectrum cannot get steady remunerative employment, they cannot fund the role of NAS to support adult issues. That's still coming from parents with autistic children in the main.

I understand where autismtwo is coming from because I rail against the world constantly. I'm a fervent letter/email writer on a lot of things. And it gets me into a lot of trouble. I do get carried away with my language, particularly if I have underlying rage. Seems to be part and parcel of what having this condition is all about. I live asmidst numerous ongoing storms.

Trouble is NAS cannot do much about it. Its remit I guess is to facilitate, which it does admirably via this forum. But it isn't down to NAS to resolve issues like primary care and local authorities.

The NHS at the moment is currently being strangled by central government's bizarre schemes and machinations, as is much of education. Local authorities have become a complete joke. Democracy no longer has anything to do with it, as local government civil servants have acquired even more autonomy than Whitehall. Dr Who never came up against monsters as profoundly bad as the real civil service.

Everyone, not just people on the autistic spectrum, are suffering from the loonacy of our local and national government civil services, the directors of the NHS, of universities and schools....the list is endless. We are going through a break down in society due to impossible levels of beaurocracy.

Much as I would like them to try, NAS cannot take these demons away.

I don't deny you really feel the way you do, autismtwo, but its no good blaming NAS. I think a period of contemplative reflection is called for, maybe stay off posting for a couple of weeks, until you've calmed down a bit, because this rage with NAS isn't getting you anywhere.

Hi - I've noticed since I started coming on this site that contributors with Aspergers/HFA are vocal in their disappointment regarding how the nas represents their interests.  I think this needs to be taken on board by the charity + acted upon.  Perhaps the Board could devise a questionnaire, asking  those who visit the site to rank in order of importance what they think the nas should be campaiging on?  It would be interesting to hear the opinions of those who aren't autistic.  As an NT I find this site + the posts interesting + informative.  I especially learn from the contributions of autistic people.  So on it's own this site is worthwhile in my opinion.  My son was diagnosed in the mid 1980s - most people weren't on line.  You had to go to the library to find even 1 book on autism.  Some of these books were old + the theories discredited.  I found the nas address on a leaflet at our hospital.  That's what it was like then.  The nas helped us, including funding a weekend for parents with newly diagnosed children.  I was very appreciative of what they did for us.  My opinion is that the nas can only achieve what those with more power than them are willing to give.  Whatever the government of the day is, it's always the main culprit in all this.  All political parties support "popular causes".  That's where the votes are. There aren't enough votes/interest in autism at present.  So I suppose 1 of the jobs the nas must have as a priority is getting more action from the government during the worst economic crisis we've ever had.  The nas could also examine what it does with it's income.  If social services + the nhs give the nas money, they stipulate what that has to be spent on : eg - residential autistic services, supported living. I think the nas's hands are tied to some degree - all because of "he who pays the piper calls the tune" (money reference).  I do think the nas does a lot of good, especially with this site + providing educational + care services.  Like all the people on this site, there are so many gaps in services that many people do not get what they need or want.  Back to national government again.  But even then it's not all down to them.  Where there's a will there's a way + there's really no excuse after all these years for organisations such as care providers, social services, the nhs, etc, not to have done more than they have in some cases to make better provision.  As you can tell, I could go on for ages but will not as I'm sure lots of people will have their say.   These are just my general opinions.  I hope I don't cause any offence.  Best wishes to everyone