Jump to content
Canopus

Disappointed with the NAS?

Recommended Posts

We haven't really tested it out in terms of what services it offers - I'm not even sure what they are to be honest. We read the magazine, though, and that's ok.

Share this post


Link to post
Share on other sites

I tell u they helped me to understand myself, If it was not for them I would not know how to help myself. I been to there conferences and enjoyed myself.. in which I made friends. Nas also has advice line that gives u advice on subjects- i found them to be helpful, although when it comes to counselling it comes down to money.. they helped me get the message out to the people who did not understand my autism and were blantly ignorant IE college

Share this post


Link to post
Share on other sites

I was told on diagnosis of the NAS, but also told as an adult they can't really help so I have not even bothered looking at them so what use they are or not I have no idea but will not seek of them to receive more negativity as there is enough of that abound already.

Share this post


Link to post
Share on other sites

No, I was diagnosed by both an Educational Psychologist and an NHS psychiatrist, but on diagnosis by these two separate people I was told of the NAS 's existence, but I was also told given the fact I was an adult, it is highly unlikely the NAS would be of any use to me.

Share this post


Link to post
Share on other sites

I am a firm beliver that the only person that helps you is yourself!

 

And I am not going to start ranting about which age groups receives help and those that don't as I can't be bothered to expend the brain power

Share this post


Link to post
Share on other sites

yes i am very much so to say the least feel let down bad as so disorganised don't know what they about or what they doing don't communicate with eachother within service leave it up to you sort and deal with when your service user! so frustrating/annoying! i realised they don't care! make me feel worse stressed anxious when suppose be opposite when first became involved with them wish never had is my biggest mistake/regret! feel like i have to do all chasing/running around for them! :c feel like haven't done much supporting or helping! and my local area suppose to be the best in NAS service don't think so from service i recieved/had! hasn't been great been appauling actually and no funding excuses!

 

XKLX

Share this post


Link to post
Share on other sites

Does anyone ever get the feeling that a lot of these societies exist for their own existence ?

 

I have encountered several parents over the years who have made similar statements.

Share this post


Link to post
Share on other sites

I believe they way to understand the NAS is to go to their website do a search and look at their annual report and accounts.

 

From my understanding the NAS is an organisation who have an income in the last year of £90.5 million. Now many may see that as a lot of money. But the question is what are they really all about. 89% if that income comes as a result of fees paid by boddies such as local authorities for services the NAS provide. As a result they employ over 3,200 people every year. So does that sound like a charity or a staff agency to you, I know to me this is sounding more and more like a bussiness involved in providing services at a professional level. As a result they also need to keep an opperating reserve of around the £5 million mark.

 

Now where my problems start to appear with the NAS is all about foucus. The question has to be who provides the income because that is where the focus starts to come into play and the answer is people with a diagnosis who recieve funding streams from boddies such as local authorities. In effect the people who bring the money in and take it out. Now I have no issues with people from within the autistic community who are part of that process. I have no reason to start to question the levels of funding they recieve in respect to their needs what I do have some issues with is the culture it creates and one which is perpetuated on forums such as this.

 

The problem is that those people on the inside of this process believe everyone with ASD diagnosis are somehow part of the autistic community in this country. The truth is that community in its loosest terms is completely two tiered in respect to the haves and have nots. The issue is that the reality of this fact is not been rightly examined and reflected on.

 

In the same annual report the aims of the NAS are laughable. Even if we took all of their income and dividued it up between projected figures of who may be on the spectrum in this country that would only lead to a figure of £130 for all of us. Then look at the aims of the NAS and you would see it would be impossible for them to even begin to be met.

 

The truth is the NAS is not reflective of the wider autistic community nor is it really a charity. It is a bussiness with a focus on a small sector of the community the one with public money attatched to it. It does little to try and change that basic dynamic and so does the vast majority of us a massive disservice by positioning itslef as the national all encompassing charity. It claims the expertise on autism is within its ranks but to be honest I have found nothing new or of real interest on its website which i didn't already know after reading two or three good books whilst I was going through my own diagnostic process. To someone who knows nothing about autism it might all look impressive but to anyone with the slightest clue the information and depth is increadibly weak.

 

To give an example of this there are conflicting views about anti-depressants and the autistic mind in current research a really important topic which you would expect there to be opinion on, or at least the evidence, try and find it?

 

The issue for me is that because the NAS has a monopoly in the sector it sweeps up any public money as a greedy animal saying we can do that and government departments oblige. In effect it completley kills off grass routes level activism. I know if I won the lottery and wanted to put say £100,000 in an autism project I would be far better served setting up something which was focused on one aspect of autism and spending the money directred at that and in doing so possibly move understanding or good practice a step forwards. Give that money to the NAS I suspect it would just get lost within the system and would go towards supporting some administrative sallaries.

 

I think we have to simply see the NAS for what it is, if we simply imagine it to be a national charity which is there to support us all many of us are going to be really disapointed and that is not healthy. I don't think we want to create a dependency culture within the autistic community where it need not be there. As such it is important to recognise needs but the answer is not going to be the NAS regardless of what their aims are. For many it is not going to be the NHS either. I think that often leaves us with friends and family and where they are not there we have to take responsibility ourselves and many people fit that last category. The thing that is upsetting for me is not that many people are in that place but rather there is a national denial by groups such as the NAS simply because it highlights how far off the mark they are in achieving some of their own aims, there is a massive amount of denial in the organisation and that is pretty sick when the individuals concerned are sat in a nice air conditioned office recieving a reasonable sallary whilst adults with ASD are in cold unhealthy bedsits barely making ends meet with little or no help for all manners of secondary mental health issues. Those individuals don't own a computer so would never have a voice on this forum yet a group claiming to be a national charity doesn't even recognise they exist, rather they are happy to recycle their values which origonate from a group of parents who came together. I am not disrespectful of those values and origonal aims, it is the fact the NAS claims to have expanded its thinking which worries me.

 

I am sure someone from the NAS will come onto the forum post and correct me because with £90.5 million you would think they might take a look every now and again and add to these message boards.

Edited by LancsLad

Share this post


Link to post
Share on other sites

Lancs Lad, well said !

 

We await a NAS representative for sure yes, one would think they would take an interest in websites such as this, that is if they are not too firmly wedged up their own backside.

Share this post


Link to post
Share on other sites

To be honest if they were really open and said they are basically functioning as a service provider for the public sector targeting a limited number of cases of ASD within a certain area of the spectrum I would have no real issues with them. Likewise if they said they were an organisation offering basic information for parents then likewise I would have no real issues.

 

If you go and look at an area such as deafness and hearing loss, an area my partner professionaly works in and personally supports in respect to charities there is in my opinion a completely different approach, so I believe the issue is one of leadership and direction.

 

I think a danger in life is when people say "I can do that, I can do that, I can do that" and them then realising they have dug a massive hole for themselves. They tend to stand there looking pretty and hope no one notices but if they do the questions come in such as "didn't you say wou were going to do that". They have a choice to either remain silent and hope the questioner goes away or respond with "I never actually said I was going to do anything" at which point people will make conclusions. To be a charity which actually doesn't do anything is a difficult position to take. Now I am not saying that they do 'nothing' but I do question why the NAS is so very quiet when it comes to certain areas which fall outside of its core bussiness concerns.

 

Part of me understands that a few years ago there was a culture of shouting at central government and hoping that large amounts of cash would flow in your direction. As such I can understand the "I can do that culture". The reality is that culture is no longer there if it ever really was and there needs to be a change of direction, whether the leadership within the NAS is capable of doing that I don't know. Time will tell but I am not exactly waiting with baited breath.

Share this post


Link to post
Share on other sites

Is anybody disappointed with the NAS, or feel that it doesn't provide the services that your family requires?

 

To be disappointed I would have to have believed in them in the first place and I do not and did not - sure they have some info, its useful for giving people the gist about autism, but for me personally they offer little or nothing more.

 

To take personal responsibility and use that to look for answers or pointers from the NAS is futile because they do not have the answers.

 

The simple fact is that is someone threw me into a desert and left me there I would have choices, sit down and die, wander around aimlessly and then give up and die, wait and hope someone came along and if they didn't I could die - or I could pick a direction and walk, and walk until I could walk no more, and then I would crawl if I had to, and maybe I'd get somewhere, maybe I'd dig for water if I found the right location, maybe I'd get enough energy to walk again, maybe.

 

As I see it even "maybe" is worth walking towards because its better than sitting around waiting to die or giving up, and "maybe" is about taking on more personal responsibility because walking is trying to do something much better than sitting down waiting to die, and "maybe" could lead to anything, certainly opens up a lot more different places than going nowhere does.

 

The first year of my diagnosis I felt very isolated, I thought there would be help at last - there is - but not in the way I thought, you have to use knowledge and experience and do something cuz nobody else is gonna do it for you. The diagnosis provides answers and understanding to some things, but it doesn't provide a solution, that has to come from elsewhere and largely from within ourselves and the people who do know what they are talking about through their experience and not from some society like the NAS.

Share this post


Link to post
Share on other sites

To me, they've represented a total waste of my money. I was a member for 15 years and they never benefited our family one iota, total waste. When I was asked to renew my subscription I told them exactly that, that they hadn't made one difference to the lives of my son or my family over the years, so what was the point of continuing to write out my cheque every year. I suppose they are there mostly for campaigning, but I struggle to see how relevant they are to most people affected with autism and what difference they make to their lives.

 

~ Mel ~

Share this post


Link to post
Share on other sites

I believe they way to understand the NAS is to go to their website do a search and look at their annual report and accounts.

 

From my understanding the NAS is an organisation who have an income in the last year of £90.5 million. Now many may see that as a lot of money. But the question is what are they really all about. 89% if that income comes as a result of fees paid by boddies such as local authorities for services the NAS provide. As a result they employ over 3,200 people every year. So does that sound like a charity or a staff agency to you, I know to me this is sounding more and more like a bussiness involved in providing services at a professional level. As a result they also need to keep an opperating reserve of around the £5 million mark.

 

I was discussing the NAS with a parent who was very unimpressed with the services and level of support it provided for her son with high functioning AS. When I told her that the government handed £78.7 million of the taxpayer's money to the NAS in 2010 which amounted to 89.1% of its total income her jaw nearly hit the floor. She then questioned whether the NAS was really an outpost of the government rather than a charity, and if the government is willing to spend £78.7 million pounds on ASD then why on earth do they not channel it through their own public sector institutions like state schools, the NHS, and councils?

 

Last year I raised the issue of the NAS being a government funded 'fake' charity. Now it has been officially revealed that the NAS is a fake charity.

 

http://www.asd-forum.org.uk/forum/index.php?/topic/27617-the-nas-not-much-cop/#entry317502

 

http://fakecharities.org/2011/02/charity-269425/

 

The issue for me is that because the NAS has a monopoly in the sector it sweeps up any public money as a greedy animal saying we can do that and government departments oblige. In effect it completley kills off grass routes level activism. I know if I won the lottery and wanted to put say £100,000 in an autism project I would be far better served setting up something which was focused on one aspect of autism and spending the money directred at that and in doing so possibly move understanding or good practice a step forwards. Give that money to the NAS I suspect it would just get lost within the system and would go towards supporting some administrative sallaries.

 

The NAS is similar to the National Lottery and how it managed to effectively nationalise lotteries by driving the existing local lotteries to extinction!

 

A serious problem with the NAS receiving such a high proportion of its funding from the government is that it is forced to respect the government's policies because biting the government in the butt will be biting the hand which feeds it.

 

I think we have to simply see the NAS for what it is, if we simply imagine it to be a national charity which is there to support us all many of us are going to be really disapointed and that is not healthy. I don't think we want to create a dependency culture within the autistic community where it need not be there. As such it is important to recognise needs but the answer is not going to be the NAS regardless of what their aims are.

 

The NAS has the public recognition and is also the ASD organisation backed by the education system, the NHS, and much of the mainstream media. I was discussing this issue with a parent who is a manager of an independent local ASD support group who told me that whenever ASD is suspected in kids by schools or NHS doctors then they are always referred to the NAS and never to the independent local support group. He has tried and tried in vain to raise awareness of his support group with the LA and GPs but they all seem to ignore it in favour of the NAS. As a result of this the majority of parents head straight for the NAS and only those who search further afield or are let down by the NAS approach the local support group.

 

Another problem is that parents have a liking of obtaining all their services under one roof (just like shopping at a supermarket) rather than using different service providers for different things (like the High Street shops) which further skews public support towards the NAS rather than more specialised ASD service providers.

 

I am sure someone from the NAS will come onto the forum post and correct me because with £90.5 million you would think they might take a look every now and again and add to these message boards.

 

We have had several forum users in the past who have been members of the NAS. Most of them hold favourable views towards it.

Share this post


Link to post
Share on other sites

Yes we were totally let down by the NAS. They kicked my son out of his day service ( after 18 months ) for becoming challenging. They said ' we do not cater for everyone '.

Share this post


Link to post
Share on other sites

We have had several forum users in the past who have been members of the NAS. Most of them hold favourable views towards it.

 

What do you base that statement on?

Share this post


Link to post
Share on other sites

Canopus I have looked back 4 or 5 years and things have changed in many ways both on the forum and in respect to ASD diagnosis in general in respect to the make up of the community but not in attitudes in many areas.

 

What I find really frustrating is that the diagnosis of adults with for example Asberger's simply isn't being used in a constructive way at all. Without doubt the adult Aspie population will present a very mixed picture. But within that adult community there are I believe many success stories of people with AS who have gone through tremendously difficult experiences and have come through those so much wiser. There are also many individuals I believe who have achieved many amazing things both by using the condition and by battling against it often all at the same time. I would have thought many such as the NAS would have seen the growth in adult diagnosis as a massive gift and an opportunity to make significant strides forwards in respect to information, strategies and highlighting issues.

 

What I see however is a culture which is locked into children, teenagers and now is moving into the early twenties range. Without sounding disrespectful to individuals or parents of individuals in those range AS is a developmental condition. As a result I believe it took me untill my mid to late twenties to really develop the levels of maturity to reflect on my life in a constructive and positive way to draw quality conclusions. Within the current climate it feels as if we will have to wait another eight or ten years before any of those conclusions even start to become part of mainstream thinking when in reality there are fully loaded trees just ripe with fruit ready to be picked.

 

The problem with the NAS is they seem precocupied with growing seedlings as their core focus rather than take the opportunites offered of a potentially bountiful harvest. In doing so they simply reinforce cliches and seem to feed off a constant cycle of confused parents who are coming to issues for a first time. In contrast individuals who have years and years of experience are completely ignored by them both in terms of needing support and importantly in offering support in the development of knowledge and ideas. As such we have a culture of 20 year olds who think they are experts because they feel they are at the leading edge of AS development or professional who do not have the condition and have a knowledge based on training which really didn't look beyond adolescence as such they are completely patronising.

Share this post


Link to post
Share on other sites

As an Aspie diagnosed in my 30's I haven't found the NAS to be a great help. Asperger United is interesting enough, but all the rest of their literature seems geared towards NT parents with newly diagnosed autistic children. I did ring for information about driving, but felt patronised and didn't find it a pleasant experience.

 

NAS did used to run a group here for adult AS/HFA, but the leader left at the start of the year. When I checked what was happening, a new volunteer said he was going to get the group going again. This was in June. Nothing has happened since then. When I saw someone from our ADHD & Asperger's team, she mentioned NHS-run local groups. I mentioned the NAS group, and she replied the team had taken them over from the NAS. From my perspective, the NAS has done very little to help me.

 

If people advise not to be involved with the NAS, is there another group others would recommend linking up with?

Share this post


Link to post
Share on other sites

No, I was diagnosed by both an Educational Psychologist and an NHS psychiatrist, but on diagnosis by these two separate people I was told of the NAS 's existence, but I was also told given the fact I was an adult, it is highly unlikely the NAS would be of any use to me.

 

There seems to be a postcode lottery regarding the NAS, ive heard good and bad about them. Nottingham for example and possibly Liverpool (if the Liverpool Asperger Team are NAS) are really good.

 

There are different departments and sections within the NAS, the helpline has been very helpful as has Advocacy. NAS appears to be streamlining but allocating £32m to improving a certain residential home was a total waste of resources IMHO. This was during what was supposed to be a recession.

 

In short I am neutral on this subject (a rarity for me).

Share this post


Link to post
Share on other sites

There are different departments and sections within the NAS, the helpline has been very helpful as has Advocacy. NAS appears to be streamlining but allocating £32m to improving a certain residential home was a total waste of resources IMHO. This was during what was supposed to be a recession.

 

I kind of agree about where the resources are targeted. But I think 'direction' is a difficult area for the NAS an one which they need to think carefully about.

 

To use an analogy of another scenario maybe others might see what I feel the problems are and what solutions might be appropriate.

 

Because of our involvement in firstly Iraq and now Afghanistan the MOD are facing a growing problem. Whilst we hear of deaths on the news what we tend not to hear about on a regular basis are the large numbers of soldiers who are returning to this country after having limbs removed by incendiary devices. We are not talking one or two but hundreds upon hundreds. I live in a city which has a garrison and for the first time in my life I am starting to see young men out and about missing limbs. The problem for the MOD is what do you do about it, what level of support is appropriate?

 

At one level you could say it is just part of a dangerous job, fly them back and treat them in a civilian hospital and at the first opportunity terminate their contract. At another level you might feel an obligation and a level of responsibility to look after those individuals for the rest of their lives. The dilemma for the MOD is if you take the first line of action the perception amongst the general public will be of a callous organisation and recruitment would be even more difficult. If you take the second option the costs would be completely prohibitive and large sections of the defence budget would be having to be spent in a way which is like handing out a fully enhanced pension and compensation to a 19 year old who might be expected to live to say 90.

 

I personally think that the NAS or anybody or group dealing with autism is facing the same sort of dilemma. They simply have not factored in the realities of adult diagnosis. It is an incredibly naive thing to do, it is like believing groups such as Taliban sympathisers are going to come out play fair and fight a conventional war. To believe children and teenagers don't go on to have significant issues in adult life is crazy. To believe there are not 100,000's in the adult population is equally naive.

In a way spending £32 million on a project is like the MOD building a super slick rehab home for injured soldiers with 32 beds in it. It is great for the people who work there and live within it. It looks fantastic to people who visit it. But the reality is it's a complete waste of space if you are a soldier lying in your local hospital having surgery to repair shattered limbs and haven't got a cat in hells chance of ever getting into the place. In a similar way you might be a nurse, physio, psychologist or family member supporting that soldier close at home and wanting to do your best, but it is very difficult to know what to say and do to repair some of the real damage which is about self esteem, self worth, hope etc... simply because they, like me wouldn't have a ###### clue what it was like to be on patrol in that sort of environment and experience an improvised incendry device go off in the middle of a patrol group. The people who really know and the ones best placed to deal with things such as this and the rehabilitation of injured service men and women are those who have been through the same experiences. The people who have come out the other side and built a new life for themselves.

 

In a similar way the NAS will be unable to keep up with the growth of ASD diagnosis, predominantly Asperger's in this country. No number of new fancy schools, residential homes or work based centres will ever start to scratch the surface. In many ways I think they are counterproductive because it falsely highlights you need all these special environments and professional expertise to solve basically simple life issues. It is like saying to an injured soldier if you don't make it into the specialist residential centre you might not have much hope, when the reality might be you just have to learn to get by on artificial legs. The answer for ASD is I believe mentoring programmes putting people who have been through experiences in life with people who are finding it difficult to adapt to their existing circumstances. It needs to be way more focused than the concept of a local support group which in my opinion is a collection of parents going through things for the first time it is parents supporting parents not an ASD diagnosed individual supporting another ASD diagnosed individual. A good system would immediately feed in a mentor as soon as the diagnosis was made. When me and my partner were recognised as foster carers we were immediately given an experienced mentor couple who were absolutely brilliant. We thought we were going through things for the first time when kids were great for a couple of weeks and then suddenly it was if a tin of fireworks had exploded. Our mentors just laughed with us and said it is like that nearly every time, and we thought thank goodness it's not just us not having a clue.

 

At a serious level my concern is if AS as a condition and importantly AS in adults is not dealt with in some way such as mentoring schemes but rather is ignored, there is a real danger the issue around it will become really big and out of control. At that point the sensible conclusion might be from a political and economic perspective to strike the condition off the books so to speak, assign it to history. Such an approach I suspect would suit many in the NAS because we would return to a culture based on 'classic autism' rather than one of an 'autistic spectrum'. In some ways such a move would not really affect the likes of myself, but for many younger Aspies diagnosed in the past few years it could be devastating. And at that point questions would be asked of the NAS why didn't you do something to address the obvious issues which were going to be generated as a result in the growth of diagnosis in respect to AS. The questions would revolve around why didn't you put low cost structures in place and tap into the resources of those recently diagnosed with AS who were mature and had masses of experience in real and practical terms. It is at that point where I think they will have difficulty justifying services they have built up in for example the education sector aimed as Aspies in the school age range because the reality will be the diagnosis will be no longer valid in respect to their own funding.

 

At that point rather than anything being in place it will be the equivalent of tough ###### mate you have just had your legs blown off, never mind. The question might be of the poor soldier did you take out a very good critical life insurance plan and the answer might be they don't insure soldiers. The next question might be are you an officer mate because they look after those ranks. In a similar way I think there will be many individuals screaming for promotion to have a classic diagnosis simply to stay in the system. The vast majority of people on the spectrum may well be innocent victims of life who just have to work out where the hell do I go from here.

 

Just a few more thoughts.

Share this post


Link to post
Share on other sites
personally think that the NAS or anybody or group dealing with autism is facing the same sort of dilemma. They simply have not factored in the realities of adult diagnosis.

 

The problem is partially a result that the NAS does much of its work through schools and seems to lack an effective mechanism to deal with people outside of the school system. Parents of home educated kids overwhelmingly say that the NAS is next to useless for them because it doesn't offer them many services.

 

In a similar way the NAS will be unable to keep up with the growth of ASD diagnosis, predominantly Asperger's in this country. No number of new fancy schools, residential homes or work based centres will ever start to scratch the surface. In many ways I think they are counterproductive because it falsely highlights you need all these special environments and professional expertise to solve basically simple life issues.

 

It was highlighted several years ago at an AS meeting that the NAS channels a considerable proportion of its resources towards its network of special schools and providing residential support services. In reality the fastest growing section of the ASD community since about 1995 are people who don't require residential support services nor do the NAS run schools effectively cater for their needs. Instead they require services for the environment in which they work or study.

 

At a serious level my concern is if AS as a condition and importantly AS in adults is not dealt with in some way such as mentoring schemes but rather is ignored, there is a real danger the issue around it will become really big and out of control. At that point the sensible conclusion might be from a political and economic perspective to strike the condition off the books so to speak, assign it to history. Such an approach I suspect would suit many in the NAS because we would return to a culture based on 'classic autism' rather than one of an 'autistic spectrum'. In some ways such a move would not really affect the likes of myself, but for many younger Aspies diagnosed in the past few years it could be devastating. And at that point questions would be asked of the NAS why didn't you do something to address the obvious issues which were going to be generated as a result in the growth of diagnosis in respect to AS. The questions would revolve around why didn't you put low cost structures in place and tap into the resources of those recently diagnosed with AS who were mature and had masses of experience in real and practical terms. It is at that point where I think they will have difficulty justifying services they have built up in for example the education sector aimed as Aspies in the school age range because the reality will be the diagnosis will be no longer valid in respect to their own funding.

 

This is a situation that I'm concerned about. The NAS is run primarily by NT parents and lacks input from adults with AS. It is important to take into account that the NAS did not contribute anything to co-discover Asperger syndrome in the UK. Prior to Hans Asperger's paper being translated into English in 1991, the NAS just focused on classic autism. Nobody ever did investigations into child behaviour at school to identify if the autistic spectrum extended further or to find explanations to the then mysterious AS traits.

Share this post


Link to post
Share on other sites

Canopus I have looked back 4 or 5 years and things have changed in many ways both on the forum and in respect to ASD diagnosis in general in respect to the make up of the community but not in attitudes in many areas.

 

What I find really frustrating is that the diagnosis of adults with for example Asberger's simply isn't being used in a constructive way at all. Without doubt the adult Aspie population will present a very mixed picture. But within that adult community there are I believe many success stories of people with AS who have gone through tremendously difficult experiences and have come through those so much wiser. There are also many individuals I believe who have achieved many amazing things both by using the condition and by battling against it often all at the same time. I would have thought many such as the NAS would have seen the growth in adult diagnosis as a massive gift and an opportunity to make significant strides forwards in respect to information, strategies and highlighting issues.

 

What I see however is a culture which is locked into children, teenagers and now is moving into the early twenties range. Without sounding disrespectful to individuals or parents of individuals in those range AS is a developmental condition. As a result I believe it took me untill my mid to late twenties to really develop the levels of maturity to reflect on my life in a constructive and positive way to draw quality conclusions. Within the current climate it feels as if we will have to wait another eight or ten years before any of those conclusions even start to become part of mainstream thinking when in reality there are fully loaded trees just ripe with fruit ready to be picked.

 

The problem with the NAS is they seem precocupied with growing seedlings as their core focus rather than take the opportunites offered of a potentially bountiful harvest. In doing so they simply reinforce cliches and seem to feed off a constant cycle of confused parents who are coming to issues for a first time. In contrast individuals who have years and years of experience are completely ignored by them both in terms of needing support and importantly in offering support in the development of knowledge and ideas. As such we have a culture of 20 year olds who think they are experts because they feel they are at the leading edge of AS development or professional who do not have the condition and have a knowledge based on training which really didn't look beyond adolescence as such they are completely patronising.

 

I find myself in total agreeament with everything you say in this post. I can't understand why there seems to be no interest in adults who have received a late diagnosis. These are the people who have managed to lead a (relatively) successful life by finding their own ways of dealing with many of problems faced by those with AS. Surely researching into how this has worked would be invaluable in helping younger people.

 

Maybe part of the problem is the sceptism with which some professionals regard adult diagnoses. There is also the fact that parents - naturally enough - want to believe that with all the support and 'treatment' available their children will be able to move comfortably in the NT world; hearing about the continuing problems/difficulties adults suffer isn't what they wish to hear.

Share this post


Link to post
Share on other sites

You say they do nothing, well actually I do not see that- they push through for the autism bill? I support the petitions so the changes are made. Also NAS has a AAN which there are ambassadors, champions, etc with autism and so they are trying to make change for the better. I think the ony problem is when it comes to the helpline, there is so much information they have and its hard national level in each area. also if you think they are not doing a good job, tell them what they need to improve... they are always looking for feedback. dont just say your doing a C**p job and et them guess what they need to improve u need to tell them. There are surveys they come out what needs to improve. Tell them what they need to improve on

Edited by Special_talent123

Share this post


Link to post
Share on other sites

Maybe part of the problem is the sceptism with which some professionals regard adult diagnoses. There is also the fact that parents - naturally enough - want to believe that with all the support and 'treatment' available their children will be able to move comfortably in the NT world; hearing about the continuing problems/difficulties adults suffer isn't what they wish to hear.

 

In respect to professionals I think there may be a level of sceptism Indiscreet but it is quite handy for them to take that line when it serves their own intrests. I know when were were foster caring there were professionals around recieving nice fees for half hour sessions here and there. They would look at the kids in care and state the ###### obvious "this child has issues", well to be honest that is what happens when you get sexually abused at a young age and left on the streets. At no point did these professionals offer to take the kids into their homes for even a week to observe them closely see what they were like in the real world, far from it, they wouldn't even visit our home for thier infrequent half hour session we had to go to them.

 

In contrast people do take kids in and work with them close at hand and what do they get for it, well the answer is nothing it simply covers expenses for food, clothing and the stuff you would do with your own kids, but we don't complain we just get on with it because the kids matter. And the professionals find that very hard to deal with and I am not surprised. Because in my experience if you turn up with happy smilling kids a few months down the line they are pissed off because their copy and paste exercise for their next report has just gone out the window. But because there is no way they would have the kids they have to accept somebody has to do it. The problem is these people often need tools to maintain their status and those tools are writting a report here a review once a year and another report, it is a cultural thing. And because they are experts the conventional world defers to them.

 

Indiscreet I think you are also very right about parental attitudes and I see it a lot on the forum. There is a reality about ASD and that is it is a life long condition and that is difficult for many to accept. In my opinion that really isn't doing the kids a service. The issue is it supports a culture which is not good. There is for example a fully approved request for undergraduate research on the forum at the moment looking at self-esteem in 14-16 year olds. Which group is being asked to participate in the survey 'the parents of 14-16 year olds with AS'. Why not ask adults with AS what was your self esteem like at 14-16 I am 47 but I can still remember! It is little things like this which make me feel like saying forget it in respect to the forum and ASD in general because to be honest I am ok, I am able to get on with my life.It is not peoples issues which I find challenging it is the background culture. I often ask myself is this about the individuals with ASD or the people around them? In reality many people with ASD lead very unconventional lives because they are unconventional individuals. The problem with ASD culture is it tries to drag the unconventional and make it conventional and that simply doesn't work. When it doesn't the next point of call for conventional thinking is to adopt cliches and find individuals who fit those patterns. It is at that point that professional and parents say "told you so" to people like myself.

 

To answer your points Special-Talent I am not saying the NAS do nothing, given £90 million they are bound to do something, and I fully respect your experiences of the organisation as being valid. In my experience they are interested in individuals who think like them and come from within their culture, they are deffinately not interested in individuals such as myself who do not. As such they are in my opinion not representitive of autism in general what they really are representitive is a section of the population who share their views on autism. The main issue for me is that those views are predominantly NT driven.

 

When it comes to Ambassadors and Champions and I am not being personal here it is easy to draw people from within an organisation's own ranks. That is like recycling a culture and it doesn't really lead to new thinking, radical ideas and change. As you say Special-Talent they have done things for you and I understand that but there is a temptation for you to therefore say do more of the same. I have approached the NAS and I know what my experience was. And what concerns me is that I am a pretty skilled individual with quite a lot of experience in a wide range of areas and I found them to be very dismissive. And my conclusion I have to say was that many people who share my way of thinking have "no chance". I had been told this would be the case by a couple of respected specialists in the area who have published books, run services and seminars etc... they told me not to bother I was wasting my time, I gave the benefit of the doubt to the NAS, I had to contact those individuals back and say you were right!

Share this post


Link to post
Share on other sites

Here in Scotland our Scottish Autism Strategy is focused fairly squarely on adults. They went for an Autism Strategy rather than a Bill as it was felt more likely to produce more practical outcomes. It seems to have helped or at least set the ball rolling.Adults with AS have been taken very seriously The extremely successful "one stop shop" for adults with Aspergers in Edinburgh has been really excellent for many people (800+) and 6 more such projects are now being funded throughout Scotland.

I suppose a key thing is that the NAS is only one of many ASD organisations up here and is not accorded the status it seems to have taken for itself down South. Loads of ASD projects both large and small have also been funded with an adult focus (as well as some for kids too).

Of course there is much to do. The mentorship idea is great. Just need to somehow get it organised!!

Share this post


Link to post
Share on other sites

For me the word strategy says it all. It is action orientated, an approach about doing things. As a concept a strategy has within it ideas about reflection and adaptation if needed. In complete contrast the idea of a bill is about locking down a positioned way of thinkg as a rigid reference point. It is a response of the inflexible and over opinionated.

 

Just personal thoughts.

Share this post


Link to post
Share on other sites

The problem with the documentation 'Fullfilling and Rewarding Lives' if we want to open up the debate further is its starting position is a centralised view based on public service provision and controlling those outputs through best practice in respect of the consultation documentation.

 

Taking that best practice and pushing a bill through political processes in Westminster will do two things. Firstly it will put another rolled up piece of parchement paper into the vaults of Westminster and secondly it will lay down in law stricter guidelines as to how services should be delievered in this country. Even when in place most people will carry on in the same old way. There will be one or two who will decide to put the effort into fight for their rights, is that how it really should be?

 

That is all well and good as an individual if you have an attatched funding stream which enables public services to spend tax payers money. At a simple level all the bill will do is say how they go about consuming tax payers money.

 

For those individuals with ASD conditions who have none or recieve very little financial provision the bill will do absoloutly nothing. It doesn't matter how many fluffy well meaning statements are in the opening sections, it will fundamentaly change nothing for large numbers of people on the spectrum. In truth we shouldn't need a bill directed at autism what is need is leadership and good quality practical ideas to improve the lives of people. That is what the NAS should be all about not posturing over political processes which really highlight the fact that they along with others have done a terrible job overall in the area of autism in this country.

 

What I feel more people should have done is go through 'Fullfiling and Rewarding Lives' and things such as the NAS annual accounts and reports and scrutinise them in detail, but very few people do and that includes professional who make a living out of autism. The problem we have when people don't do that is bodies such as the NAS get seen as being more or less representitive of the whole autistic community. Individuals such as myself can and do get involved in the governments consultation processes and are critical of some elements and do put forwards suggestions but do they really get listened to?

 

For example Special-Talent when you go to your meetings how much of this independent stuff do you ever get to see. When you sit down as a representitive of the NAS how much of this stuff does get brought forwards by policy makers or is it simply a back slapping exercise and everything is wonderfull in the world of autism. And that is my issue with organisations such as the NAS and central government it is a culture which is insular and self congratulatory. It is so easy for them to say we have had one or two radical views but the NAS is recomending this better go with them. When the reality of autism in this country is tens of thousands of individuals living through a nightmare almost every day. Whilst I would never place myself in that group I am not naive enough to think those individuals don't exist and that we share many elements in our lives, as such I feel responsible for and part of the wider autistic community I just wish out national society would feel the same way.

 

Special-talent please do not take this personally because I respect you will see things from your perspective all I want to do is put things as I see them. This is an open forum and someone from the NAS is fully entitled to come on here and try and shoot me down in flames. In fact I and I suspect others would welcome that exchange and to go through proposed policy documentation and annual reports. And have an open an honest discussion. At the end of which everyone could make up their own minds. All I have to say on many of these issues their silence is deafening

Share this post


Link to post
Share on other sites

There is a very cosy relationship between the NAS and the government which enables them to push through for the autism bill in a way that independent support groups don't stand a chance.

 

What do you consider to be the best future autism strategy: working through the NAS and reforming it to be more representative of the real ASD community, or improving and expanding other ASD support groups which already have a better understanding of the needs of the ASD community and are often better at providing tangible support than the NAS is?

Share this post


Link to post
Share on other sites

The problem with NAS and the government relationship is I believe because of what I highlighted earlier, the evidence is in the annual report. Their core revenue streams 89% of their income is about offering services through professionals. So see them as an agency or a union but they obviously have a massive incentive to safeguard those services. My question is for who? It is very easy to see the NAS going into meetings to make sure that standards are structured so that they are in line with the expectations and skills of the professionals in the sector. If government was to go in another direction there is a massive danger the autistic landscape would be affected.

 

Now people can draw thier own conclusions but whilst that landscape might be altered in a negative way, and the NAS can easily scaremonger it could also alter in a very positive way. From what I see on the forum most people are not happy with how things are, but there is a protectionist culture that we hope it doesn't get any worse. If anything it should be getting better but that requires leadership and an element of risk and reward to try new things.

 

In many ways diagnosis for Aspergers are a pretty new concept and as such there should be innovative thinking everywhere because we are at the early points of a natural cycle where innovators and early adopters should be prevelant. As such I believe the answers Canopus should be focused on smaller projects at local levels not in trying to create a national organisation built on concensus. For me what the NAS is trying to do simply kicks in the face of conventional thinking.

 

If you look at a parallel scenario such as deafness and hearing conditions there were a number of strategies different types of language development, the use of different technologies etc... To me there was more innovation and as such it is a field which has more scope and breadth to include both clinical aspects and social aspects such as hearing dogs. My partner as a SENCO with a wide range of kids and as a language specialist tells me local support groups in that field are far more dynamic, approaches far more positive from charities through to national organisations. In contrast the AS sphere is one of uncertainty and anxiety and often conflict between affected parties. We might say the average kid with As has it so much harder than the average death kid, but is that really true and should we use it as an excuse when it might simply be the culture which is at fault.

 

Personally I think what will happen is that for all sorts of reasons AS will be relegated as a diagnosis but the information will remain in mainstream so lots of people will say the information is there it fits me so where do I go from here. The NAS will then revert back to an organisation focused on individuals with for a better term 'classic autism'. With a reduced market they will have issues downsising their opperations in respect to the professional services they opperate. It might mean they become a better organisation because their focus will come back. As I have said previously I just think things have got too big for them and they have become greedy and seduced by a percieved power position.

 

What I think that will mean is that the AS community will be in a slightly different position and will have to be more innovative in respect to the support it gives each other. I think as such social media and local activism will drive it forwards and that might be the best thing which happens for AS. It will mean that adults with a diagnosis will be driving the agenda forwards in a way rather than parents of children. Whilst that might be a bit difficult for a child who is placed on the AS end of the spectrum because support services will be non existent, for teenagers it might be a blessing. Rather than have their parents acting as a catalyst for information and decision making in their lives, the young adult aspie will have a mature community into which to tap for information, advice and unlitmatly companionship. That community might be better place to pull and guide them into adult life rather than being pushed into it by parents and schools. After all AS is a development condition and pulling is a more forcefull action than pushing and it is more receptive to variable developmental time frames.

 

Just a few personal thoughts about something which I believe should be openly discussed where ideas can be exchanged. I am really not trying to create a monolouge here rather I would welcome an open minded discussion from a wide range of perspectives.

Share this post


Link to post
Share on other sites

The following comes from the latest NAS newsletter and I thought it might be worth reproducing it on this thread. I'll be interested to know what others think:-

 

"Autism in Maturity is a new project to support adults with autism (including Asperger syndrome) as they move into middle and older age.

 

As The National Autistic Society (NAS) reaches its 50th birthday, there is growing recognition that the first generation of people diagnosed with autism in childhood are now reaching middle age and there are also mature adults being diagnosed for the first time.

 

Autism-specific services that have tended to concentrate more on the needs of children and younger adults are now faced with the challenge of extending their reach to cover older adults. But there is little research available to guide services in recognising changing needs, or how best to respond to them. Without guidance, adults with autism may not receive the level of services to which they are entitled.

 

The Autism in Maturity project aims to:

 

gather together and define the key issues for, and needs of, people with autism as they grow older (particularly as they pass through middle age and into old age) provide information and resources for adults with autism and their siblings provide information and resources for professionals develop an advocacy service model for adults with autism that can be used across the UK create an online support system for brothers and sisters of older people with autism raise awareness of the particular needs of people with autism as they get older and develop the same age-related conditions as the rest of the population look at how services can be developed to meet the needs of older adults with autism.

At the moment, the project is in its infancy. There is still a lot of research to be undertaken, and work to be done.

 

However, we will be adding more and more information for adults with autism to this web area www.autism.org.uk/maturity as it becomes available. This information will also be of relevance to siblings who may support their older brother or sister with autism.

 

We will also be collecting case studies and useful resources.

 

If you would like information and advice about autism and related issues, please call our Autism Helpline on 0808 800 4104 (open Monday-Friday, 10am-4pm). Calls are free from landlines and most mobiles."

 

 

 

Share this post


Link to post
Share on other sites

What, has the elephant in the room finally been noticed ?

 

And research, do they mean they haven't done any in all this time and another thing, what do they mean when they say ;

 

'' there is growing recognition that the first generation of people diagnosed with autism in childhood are now reaching middle age ''

 

I take that this applies to full blown autism and not Aspergers Syndrome, because if they are including the latter, no one currently reaching their middle age was diagnosed with AS in their child hood, but still have they been ignoring adults with full blown autism all this time ?

 

The more I read about the NAS on here the more I am getting the impression they are a governing body not fit for purpose, I won't be waiting with baited breath for fear I will expire before they pull their collective fingers out.

 

But never mind middle aged, they should be lobbying the government to stop employers discriminating against AS people in applying for jobs as what is it in their figures only 15 % of people diagnosed with autism are in full time employment ?

 

If that is the case, they are not doing enough and those who actually make it to middle age will be so negative and impoverished they will not at all be surprised when the NAS 's ; Autism in Maturity turns out to be yet more hot air.

Share this post


Link to post
Share on other sites

It's because not many we're diagnosed until the recent years

 

Who wasn't ?

 

If you are meaning aspies, I now that, but I am taking this report to be about all autism which includes aspergers or high functioning autism, am I correct in thinking that ?

Share this post


Link to post
Share on other sites

Join the conversation

You can post now and register later. If you have an account, sign in now to post with your account.

Guest
Reply to this topic...

×   Pasted as rich text.   Paste as plain text instead

  Only 75 emoji are allowed.

×   Your link has been automatically embedded.   Display as a link instead

×   Your previous content has been restored.   Clear editor

×   You cannot paste images directly. Upload or insert images from URL.

Loading...

×
×
  • Create New...