Is anyone here getting any help from NAS ?

The Imp of the Perverse

All of what you say is fine zone tripper but £140,000 compensation IS an issue at this time. What the last few years has shown is that there is no direct correlation between business acumen and competence. The NAS chief executive isn't getting all that money because of who he is but what the NAS charity is offering. The proof will be in the result...not at the end of his tenure but when his actions are no longer effective in any way. 

The NAS CEO does not have to accept that money. He could make a gesture and our country could begin, in the smallest of ways, to get to grips with over-extended salaries. The old argument used to be that 'luxury' amounts of wealth don't matter because these people will use that money to employ lots of people. You might call that Downton Abbey economics. I, personally, disagree with that idea. All it does is produce a servant class. Plus accountants. Plus lawyers. Plus interior decorators. And so on. Nothing happens in isolation.

I was recently reading that in Denmark, being a lawyer is not that well-paid and that huge discrepancies in wealth are nowhere near what we have. So if you are OK with a top tier of people commanding resources that no ordinary person could possibily have use for then that is your choice. It is precisely this that I think has gone wrong with this county. And it's getting worse.

MummysGirl said:

Well said!!    x

Thank you.  

Well said!! :)   x

I recently noticed this "debate" recently, and one other, and I thought I'd give my own perspective.  By the way, I am NOT an employee or a volunteer of the NAS, but a 36 year old male who was diagnosed with Asperger Syndrome in 2011 aged 34, after experiencing another bout of depression and severe anxiety issues, which resulted in a meltdown at work.  (Thankfully, I have since returned to my full-time job.)  Anyway, here are my thoughts...

The National Austistic Society runs many different projects and schemes, some of which can be found on their website under the our services section www.autism.org.uk/our-services.aspx  They may indeed get 90% of their income from the Goverment and local authorities, and 10% of their income from supporters, but it is how they use that 90% which is most important, NOT where it comes from!  

Likewise, I could not care less whether the NAS Chief Executive's salary is £30,000 a year or £130,000 a year; if you want the best business brains, you have to pay good money in salaries to acquire them.  

Autism can vary in severity.  I, myself, have mild autism (i.e. so called Asperger) and have a college education, a full-time job, can read and write very well, can do basic maths, can draw better than average, etc.  However, I have an uncle who is more autistic than I, has learning disabilities, has required care from family or social services all his life and is now in a residental home.  Rightly, my Uncle's needs are more important than my own and therefore his care comes way before my own.  

Therefore, I do not begrudge the NAS and Social Services for prioritising their services to those most in need.  

Reading this topic and one other (community.autism.org.uk/.../nas-charity-or-business, I am of the opinion that anyone with Autism who can use a computer, type, spell, etc, to a reasonable standard, then in all probability,they are probably last in line for help from the NAS.  My own Uncle cannot even write or read, let alone use a computer!  

Also from my own experience (anxiety issues, meltdowns, anger management issues, etc), it seems to me that some people's autistic-related anxiety issues can manifest itself through anger and confrontation.  Therefore, I question whether some people criticising the NAS are letting their anxiety issues manifest as anger and are being somewhat unreasonable with the NAS.  

Even with its current levels of income, the NAS can only do so much and has to prioritise its services to those most in need.  Despite my having been diagnosed with Asperger Syndrome, I do have an education (up to NVQ level 3 in business administration), I do have very good reading and writing skills (GCSE B grade in English Language), I do have a full-time job (which pays me approx £19.000 per year before PAYE, NI and pension deductions), I do voluntary work for charity (a nature conversation charity), and I have many hobbies and interests (which includes going shopping on my own in London and going to music gigs on my own in London).  And therefore, I am not anywhere near first in line for assistance from the NAS, and rightly so!  Despite my mental health issues caused by Asperger, there are far more autistic people than I who need care and support.  

I am of the opinion that you cannot help someone who is not prepared to help themselves also.  Members who can use a computer, use the Internet, spell, read and write, research using Internet search engines, etc, are probably those in the least need of the services of the NAS.  (After all, there are some autistic people who cannot even talk, let alone use a computer!)  If you want support, then why not set up your own local support group?  There may be other members in your area who are crying out for such a support group, so why not band together and set up your own, with the help and support of the NAS?   

I am pleased to be a member of the NAS, as it allows me to receive their magazine, their Asperger newsletter, details of events, possibly join or form a local group, etc.  

(I apologise to the Mods if my posting has caused any offence.  However, I just wanted to add my two pennies worth to this forum discussion and no offence is intended.  And the views expressed are entirely my own.)

Arran said:

[quote]A single centralised organisation, with local branches, can offer the same services much more consistently, and over a much wider area, than any number of well-meaning but isolated and independent smaller orgnisations.[/quote]

I can see your point, but the NAS is clearly not fit for purpose. The problem with a single centralised organisation is that it will become corrupt and moribund due to lack of competition and driven by the whims and prejudices of whoever is in charge.

A single centralised organisation doesn't have to mean one single centralised organisation.

So competition can still exist within that model.

But, the point of my post is that if you have lots of entirely independant local organisations you have a post-code lottery - if you're lucky enough to live in the right area you get fantastic support, if not you don't.

And then there is the duplication of effort and resources.

It's also more efficient to have local branches linked to a central hub that can handle shared tasks and resources.

Hi IntenseWorld,

Sorry to hear you had problems receiving our Friendship Pack. I've spoken with the Supporter Care team and they say if yoou can drop them an email with your mailing details, they will get this sent out to you as soon as possible. Our apologies for the delay with this. Their email address is: supportercare@nas.org.uk. 

Best wishes,
Mike, NAS 

Scorpion0x17 said:

A single centralised organisation, with local branches, can offer the same services much more consistently, and over a much wider area, than any number of well-meaning but isolated and independent smaller orgnisations.

I can see your point, but the NAS is clearly not fit for purpose. The problem with a single centralised organisation is that it will become corrupt and moribund due to lack of competition and driven by the whims and prejudices of whoever is in charge.

For example, the NAS does not support home education. If it wasn't for various other ASD support groups which do support HE then families who choose to HE will have nowhere to go.

There have been instances where independent local support groups have been taken over by the NAS on the belief that they will benefit from the extra money and resources. The results have not always been positive as they have to comply with the policies of head office rather than offer services tailored to the needs of the users. One taken over group has practically ceased catering for adults; no longer supports home education; and has vastly reduced the number of opportunities where children can meet up together. All that takes place now are parents meeting up together to talk over coffee along with a few events that are really for the parents rather than the children. Another problem is that the majority of the users had Asperger syndrome but the NAS is more geared towards traditional autism.

Arran said:

There are plenty of independent ASD support organisations and websites out there that are often more useful and helpful than the NAS is. You just have to search around. One issue that I have come up against is that the British overwhelmingly have a 'supermarket' mentality and want everything under one roof rather than using different organisations for different things.

My local Asperger syndrome support group offers many services that the NAS generally doesn't provide including:

1. A facility for children and teenagers to meet up weekly.

2. Advice with CV writing and job interviews.

3. Help with home education.

4. Training children how to ride a bike.

5. Teaching various life skills and social skills.

6. A resource library.

All on a far more limited budget with no government funding.

The thing about this is that sure, maybe you have that in your area, but what about others, in other areas? Do they have access to those things too?

A single centralised organisation, with local branches, can offer the same services much more consistently, and over a much wider area, than any number of well-meaning but isolated and independent smaller orgnisations.

I also sent the NAS the application form from their autism brochure for their free friendship pack (around December 2012), it never arrived and I emailed them about it on 12th January, received a copy of my enquiry but they have never replied to it, and my pack still hasn't arrived.

If they can't help people unless they have an actual diagnosis, but their child has all the traits and symptoms of autism, then they are not a very supportive charity.

There are plenty of independent ASD support organisations and websites out there that are often more useful and helpful than the NAS is. You just have to search around. One issue that I have come up against is that the British overwhelmingly have a 'supermarket' mentality and want everything under one roof rather than using different organisations for different things.

My local Asperger syndrome support group offers many services that the NAS generally doesn't provide including:

1. A facility for children and teenagers to meet up weekly.

2. Advice with CV writing and job interviews.

3. Help with home education.

4. Training children how to ride a bike.

5. Teaching various life skills and social skills.

6. A resource library.

All on a far more limited budget with no government funding.

The support I received from a NAS support worker was invaluable!!

My personal gripe with the NAS, is before my daughter was diagnosed (but I 100% knew she was autistic) I reached out to them for help.  They would not help me because she did not have a piece of paper from a clinician agreeing that she was autistic.

When are parents going to be believed?

When are people going to be given support whilst they wait for a decrepit NHS to shorten the waiting lists for assessments?

Arran, maybe the Government is "crowding in the service",, basically for research and development reasons, since it has recently issued the Autism Bill in England which will need to be incorporated into Law by the courts under case law challenges by the public and other interest groups. The NAS will under "market" capacity and later fragmentation will dissolve into small local "revenue streams" by increase market capacity, just now LONDON is controling the business, because AUTISM is a business and a growing sector. (everything is commercial, knowledge is for sale, the NAS is the Hub exchange and clearance centre, so to speak). Like all the markets germinating from london, it will ripple up the land in time.  Just now, there is a data collection system going on about Autism levels and Adult levels, cases missed over the last 3 or 4 decades.

I personally think, that the government knows what has really causing a high outbreak of Autism and is gearing up because there graph curve level output levels are high.

Funny thing is, Autism may just be a post industrial revolution syndrome or box factory thinking spheres, with autism being the hyperspecialism condition of our modern ages, the slave factory box has become too small, due to lack of touch with nature and the sun. I come from an old line of welsh miners,, all highly intelligent now,, due to lack of serotonin of the sun(vitamin D), adding in the diet factor of potato with no vitamin D.

Mines, factories and potatoe diet equals less Vitamin D , no sun.... Autism  

http://www.couriermail.com.au/spike/columnists/mining-boom-has-tragic-side-effect-more-children-with-autism/story-e6frerh6-1225863666380

I emailed about psychologist specialising in AS in my area and got the information I needed.  It took about a week as they only check emails that often but that was OK.

I like this forum because I don't want to go on one were people can get very abusive and I cannot go on wrong planet because they have a lot of moving adverts - which amazes me for an aspie site.

Although some of the info is a bit over simplistic it is a difficult call because for some people this is there first info and they might get a bit over-faced with more subtleties.

hi - depends on what you're looking for from the nas. I'm sure there will be areas where the nas can do better.  Maybe they should reappraise how they spend some of the income.  Should more money be put into staffing the phone lines?  How much pressure, in the sense of number of calls, is there on the people who answer the phones now?   Should another budget heading be cut - if so which 1 ?  When my son was diagnosed most people weren't online.  You had to go to the library + hope they had a book there.  After a year thinking my son's autism was caused by bad parenting, because of the book I found in the library, I managed to find the nas + join.  I was a single parent + on benefits.  The nas paid for me to attend a weekend conference with my son.  It was for families with newly diagnosed under 5's.  They even arranged a life for us there + back.  So, yes, when the nas board holds their agm I think they should agree to investigate the best ways of spending their budget, altho I think they probably do something similar already.  In the end the Board decides.

Well this forum is a lifeline. It no doubt helps people with mental ill health, such as myself. Are you not being a little harsh on the NAS? I agree that no-one should be paid that amount of money, and I agree that the NAS has many failings, and needs to do better on many counts. But the fact you are using this forum shows that you are benefiting from an invaluable service, so it is a tad ironic that you are so black and white in your extreme criticism of the organization.

Hi Azeizi, lots of people on other forums are saying the same things - it seems the only help NAS offers is the kind of help that doesn't cost much - leaflets, PDF's, advice etc.. it's almost as if their job is to fob everyone off... in the meantime they blow money left right and centre on award ceremonies, offices, conferences, meetings and all the expenses that go hand in hand with them on top of ridiculous salaries to 26 executives.

How do people with autism benefit from all this 'activity' ? over 90 million pounds is an astronomical amount of money that can easily be used to help tens of thousands of people directly through accomodation, courses, training etc

To me its like people with Autism are just pawns used to get money into the trough so all the pigs can rub their snouts in. You don't even see them in this thread defending themselves because they don't have a leg to stand on - what they are doing is immoral. For someone to get paid £140,000 from money that is supposed to go to help people with Autism is disgusting and nothing anyone says to me can justify this - it's unjustifiable, come on Mark Lever justify it !!!!!!!!!! You and all the executives should hang your heads in shame you don't have any consicence at all.

I've been saying these past few weeks to my husband how pointless the NAS is, when I first phoned up over a year ago looking for advice as I thought I may have an ASD the woman I first spoke to was wonderful, she sat patiently and talked me through it all for over an hour. When I was messed about I was reassured I was entitled to an assessment and given the relevant info for that. 

Then I start calling them about my daughter a few months later and things certainly have changed. The advisors(if I could get through to one) were always very rushed, always trying to send me leaflets and get me off the phone. When I called to ask about how we proceed with a complaint against CAMHS, where we stand legally I was sent information on advocates...I can write my own letters, that is not what I asked for.

After my daughter was diagnosed I phoned to ask about IEP's as I was unsure how we proceed in getting one, again I was offered 'leaflets' explaining it all, a week later I get printouts about SEN's...again NOT what I asked. All I wanted to know was whether we could go in and ensure they explain things to my daughter more then once, allow her to leave the room for 5 mins if the noise is too much etc, I was not asking about a statement of educational needs, it's not at that stage.

Myself and my daughter have had no support whatsoever since either of us was diagnosed, the only support I can get is via a charity that is donation led (so if you need help you have to pay). This is not how it should be and frankly I'm disgusted with the NAS! On other forums I use I used to recommend speaking to the NAS if you needed advice etc but now I tell people not to bother as it's practically automated, they may as well pay and go see the people at this charity who will at least help them properly! 

If I set up a charity to feed the homeless and was given £5000 in donations then shouldn't most of that money go to buy food and pay for people to cook and deliver that food so that those the money is aimed at and raised for benefit directly from those donations ?

In the case of NAS it's as if they say 'right we've got £5000 lets have some meetings and conferences so we can talk about how we are going to feed the homeless, of course we need nice offices and we all need to get paid very handsomely for our services as well.'

You don't need to be a mathematical genius to work out that with this kind of structure then the money left in the pot to pay for the actual objectives of the charity diminishes.

Of course infrastructure is vital but it has to be accountable. Those at the top of NAS have been shown to have no morals or ethics by creaming off huge salaries so how can we have any trust in what they are doing on the whole ?

Corruption starts at the top, if those at the top are corrupt then you cannot have any trust in what that organisation is doing because they are the ones running that organisation.

If you look closely you will see whats' really happening. The chief executives salary of £140,00 has risen by £40,000 in 2 years, thats 40% - for this to happen means other executives have to vote, this raises further questions on morals because this is by no means morally acceptable.

To put it simply - Those at the top of NAS are pigs in a trough and you can't tell a pig in a trough to only eat a certain amount - it's no different to what has happened with the banks.

Arran, maybe the Government is "crowding in the service",, basically for research and development reasons, since it has recently issued the Autism Bill in England which will need to be incorporated into Law by the courts under case law challenges by the public and other interest groups. The NAS will under "market" capacity and later fragmentation will dissolve into small local "revenue streams" by increase market capacity, just now LONDON is control the business, because AUTISM is a business and a growing sector. (everything is commercial, knowledge is for sale, the NAS is the Hub exchange and clearance centre, so to speak). Like all the markets germinating from london, it will ripple up the land in time.  Just now, there is a data collection system going on about Autism levels and Adult levels missing other the last 3 or 4 decades.

I personally think, that the government knows what has really causing a high outbreak of Autism and is gearing up because there graph curve level output levels are high.

Funny thing is, Autism may just be a post industrial revolution syndrome or box factory thinking spheres, with autism being the hyperspecialism condition of our modern ages, the slave factory box has become too small, due to lack of touch with nature and the sun. I come from an old line of welsh miners,, all highly intelligent now,, due to lack of serotonin of the sun(vitamin D), adding in the diet factor of potato with no vitamin D.

Factories and potatoes with no sun.... Autism