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      Depression, Mental Health and Crisis Support   06/04/2017

      Depression, Mental Health and Crisis Support   Depression and other mental health difficulties are common amongst people on the autistic spectrum and their carers.   People who are affected by general mental health difficulties are encouraged to receive and share information, support and advice with other forum members, though it is important to point out that this exchange of information is generally based on personal experience and opinions, and is not a substitute for professional medical help.   There is a list of sources of mental health support here: <a href="http://www.asd-forum.org.uk/forum/index.php?showtopic=18801" target="_blank">Mental Health Resources link</a>   People may experience a more serious crisis with their mental health and need urgent medical assistance and advice. However well intentioned, this is not an area of support that the forum can or should be attempting to offer and we would urge members who are feeling at risk of self-harm or suicide to contact either their own GP/health centre, or if out of hours contact NHS Direct on 0845 4647 or to call emergency services 999.   We want to reassure members that they have our full support in offering and seeking advice and information on general mental health issues. Members asking for information in order to help a person in their care are seeking to empower both themselves and those they represent, and we would naturally welcome any such dialogue on the forum.   However, any posts which are deemed to contain inference of personal intent to self-harm and/or suicide will be removed from the forum and that person will be contacted via the pm system with advice on where to seek appropriate help.   In addition to the post being removed, if a forum member is deemed to indicate an immediate risk to themselves, and are unable to be contacted via the pm system, the moderating team will take steps to ensure that person's safety. This may involve breaking previous confidentiality agreements and/or contacting the emergency services on that person's behalf.   Sometimes posts referring to self-harm do not indicate an immediate risk, but they may contain material which others find inappropriate or distressing. This type of post will also be removed from the public forum at the moderator's/administrator's discretion, considering the forum user base as a whole.   If any member receives a PM indicating an immediate risk and is not in a position (or does not want) to intervene, they should forward the PM to the moderating team, who will deal with the disclosure in accordance with the above guidelines.   We trust all members will appreciate the reasoning behind these guidelines, and our intention to urge any member struggling with suicidal feelings to seek and receive approproiate support from trained and experienced professional resources.   The forum guidelines have been updated to reflect the above.   Regards,   The mod/admin team
Canopus

Disappointed with the NAS?

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LancsLad   

Indiscreet thanks for the quotes from the NAS. My initial reations are as follows.

 

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.

 

You could interperet this statement to imply that the NAS thinks that adults of say my age need the same type of services as 14 year old and that an extension would surfice. For me if this were true it simply highlights how narrow minded they are and fail to grasp the fact that as a developmental condition we change and develop as individuals whilst at the same time the scenarios around us move on and develop as well sometimes in very complex ways. As such there needs to be different approaches adopted for adults. It also implies a bias towards seervice providers as facing the real challenge not those individuals with the condition who face challenges every single day, so who do they think they serve?

 

create an online support system for brothers and sisters of older people with autism

 

I feel this is another example which highlights and in a way promotes a needy culture where the family is seen as the catalyst for change. Whilst some people on the spectrum may well continue to live with their imediate family I suspect the vast majority will move away at some point. Again this is a reflection of the NAS simply extending their current beliefs and thinking that such approaches would suffice.

 

My final concerns are with these statements;

 

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.

 

For me this strikes at setting up work related oportunites for the professional community should funding be available. It comes across that once these professionals have done the work they will be kind enough to provide us with some information. You never know some of us might get lucky and be part of this.

 

We will also be collecting case studies and useful resources.

 

We might get talked to and a nice profile of our lives will be put together by a professional along with a photo I guess.

 

So given that there are now more and more individuals being diagnosed who have massive first hand experience of living for many years with autism in its various forms is this the best the national association can 'aspire' to do with all that experience, a few case studies and put them on the internet?

 

Is it just me or do these people think that everyone with ASD conditions acts and thinks like a child and that they never ever grow up.

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Is it just me or do these people think that everyone with ASD conditions acts and thinks like a child and that they never ever grow up.

 

Yep, that was precisely what I was thinking, mind they are not alone in this attitude some medical professionals are also condescending to the point one feels as though they are being treated like a child.

 

But whatever they do regards adults they will have to learn one very important thing and that is respect, they fail to respect adults for being adults then adults will not have anything to do with them and that includes myself as one does not help by belittling people.

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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 ?

 

No I am not on about just aspies... I am on about the majority of ASD's the wide range of spectrum. I was diagnosed autie aged 14 but I was diagnosed with other things too before being an autie

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Why is all apparent development of services down to the NAS in England? There are lots of other ASD organisations great and small. The Autism in Maturity project seems far too little far too late. I know things here in the frozen North are not perfect but with the ASD strategy came funding- not a fortune compared to NAS yearly budget but £13.4 over 4 years has seeded lots of local projects as local people know what they need locally. All the proposed stuff re adults in the ASD in maturity project is already well under way here and in some cases has been for years. Have the NAS suddenly invented adults with ASD? A key statistic for us here is that using the prevalence figure of 1:100 there are fewer than 9,300 under 16s with ASD and 42,500 adults potentially with an ASD. Where are they though? Are some managing well? (I suspect so) are others languishing unrecognised in other services? (likely) are some just sitting miserably at home? (I`d like to hope not but have a sneaking suspicion they are)

There`s a lot to do here and we have to make the most of it while the funding lasts. Its important that sustainable supports of all kinds are set up I feel.

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LancsLad   

Special-Talent I want to say something which in many ways supports your own position but highlights the real issue here.

 

A few years ago we had the concept of 'autism' within our society which as a teacher I understood and worked with. I would go into special schools and work with kids I understood to be autistic. We then moved into a slightly different way of thinking and that was there was in fact not fixed conditions with slight variations but rather a spectrum of symptoms which in varied and often complex ways grouped together in patterns indicated levels of autistic traits in individuals. In effect what I and many understood as autism became 'classic autism' and that was not a point but zonal area on a braoder spectrum.

 

Where I disagree with you Special is that the majority of individuals on the ASD spectrum are in fact Aspies or high functioning autistics, thouth many tens of thousands of them are as yet undiagnosed. When it comes to diagnosis I suspect Aspies may well now be the majority. When it comes to funding allocation they deffinately will not be because the needs of individuals on the classic end of the spectrum are so much greater, or so existing systems indicate.

 

In my opinion if the NAS had focused on simply being a charity which supported parents who had children within the 'classic' range and then supported them with residential care into adult life this debate would be very different.

 

What has happened is they have portrayed the fact they support the idea of a spectrum but that does not really ring true in reality. What they have done is moved their line of support along the spectrum. In doing so it may be the case that the line has moved past the point where someone such as yourself is placed. For you that is a good thing and I am pleased you recieve support from the NAS and believe you get a good service. In reality if that means individuals who would have failed to meet the criteria for classic autism recieve support then it is a good thing and I am not against that.

 

What the NAS should do is simply say we have limited resources and can only do so much and we do so on a needs basis. But it is more difficult than that someone high functioning might be unemployed trapped in a run down bedsit in a neglected seaside town struggling to exist on basic benefits and have serious underlying mental health issues many as a spin off due to AS, so what are their needs. And I suspect in reality there are as many people living that sort of existence on the wrong side of the autistic support line than there are with identified needs on the other.

 

My argument is the NAS do not see it as a fine line rather a mirror to look back at themsleves and that is why there is so much frustration out there. The national association which claims to support all our interests is in denial about the reality of autism in this country diagnosed or not. If you are on the right side of the line you might have a reasonably good experience. The danger is people on that side of the line start shouting about needs and that theirs are greater. Needs are in reality related to the environments we have to survive in. Whilst someone for example may have classic autism their needs might be great in terms of say physical care of themselves but many individuals at the opposite end of the spectrum have needs just as severe through behavioural conditions and mental health issues such as depression.

 

A lot of the time I think the concept of the spectrum isn't working in practice. I know this is the case when people drop the idea and start throwing around badges rather than symptoms they experience in life. I believe we are about to enter into an area of badge throwing and groups such as the NAS will have to decide which badges allow membership to their club and which ones don't. It is my belief they will decide AS will not constitute mebership simply because it is too big a potential group and they would rather remain exclusive in ring fencing finance for their existing professional services. The best many with AS can expect is a bit of old hat information here and there.

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Special-Talent I want to say something which in many ways supports your own position but highlights the real issue here.

 

 

 

Where I disagree with you Special is that the majority of individuals on the ASD spectrum are in fact Aspies or high functioning autistics, thouth many tens of thousands of them are as yet undiagnosed. When it comes to diagnosis I suspect Aspies may well now be the majority. When it comes to funding allocation they deffinately will not be because the needs of individuals on the classic end of the spectrum are so much greater, or so existing systems indicate.

 

 

I was replying to Sa quote

 

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 ?

 

 

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

 

I were not even quoting ' majority of individuals on the ASD spectrum are in fact Aspies or high functioning autistics,'

I never said that- i said that the majority of individuals on ASD spectrum, any where on the spectrum they did not have the statitistics until recently because obviously it is growing over the number of years. There were not very many girls - but now the statitistics are saying more girls are on the spectrum

Edited by Special_talent123

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Canopus   

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.

 

My findings are that people who are new to AS overwhelmingly head straight for the NAS because of its prominence and recommendations from the education system and the NHS. Those who have been in the AS game for a long time and have built up a wealth of experience are increasingly steering clear of the NAS because of its failure to deliver combined with a frustrating inability to reform and improve the organisation.

 

A similar situation has taken place in home education with parents who are just starting out overwhelmingly heading for Education Otherwise whilst experience home educators tend to avoid it.

 

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.

 

There is a whole raft of information out there on the internet for teenagers and adults with AS which is beginning to render the NAS redundant. Unfortunately, parents might see things as different, especially when it comes to problems with schools, because they have their faith and trust in the professionals from the establishment. If the NAS says X and the independent AS support groups say Y about how schools should provide services, the schools will do X and most parents will broadly agree with it. Employers are also more likely to want to work with national organisations which have a good name and reputation complete with mainstream media coverage than small obscure local groups.

 

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

 

When I read this I got the impression that the NAS has pulled the ripcord to release the parachute 20 years after hitting the ground!

 

I'm not going to reiterate what other users have posted, but I am concerned as exactly how this project will pan out and whether much positive will come from it.

 

There have been times when I have wondered whether the NAS has deliberately functioned as a roadblock to the deployment of better quality services for people with AS by independent organisations because of its huge presence and government backing.

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LancsLad   

When I read this I got the impression that the NAS has pulled the ripcord to release the parachute 20 years after hitting the ground!

 

I think that is the best line I have read in ages, laughed my head off and yes I think you are right on that one Canopus. Maybe it is muscle reaction as rigormortis sets in.

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My experiences of the NAS have been rather mixed. I was a member of their social groups in Bristol and the way that they pulled out when the funding was no longer available was disastrous, they gave us very little notice that it was going to happen and we are still trying to recover from the fallout (18 months later). Not to say that the groups were perfect because the way that they facilitated the groups wasn't brilliant either. They didn't treat their volunteers very well either and have had a lot of complaints from support workers and volunteers alike about the way that they run things.

 

The outreach service provides my support 8hrs a week and it has it's good and bad sides. They have been chronically understaffed for a long time now, yet I don't see that they are making much effort to improve that situation. As soon as they gain a new member of staff, one leaves! It doesn't help that the pay level is so low that a lot of people are put off doing the job. So they never actually get more staff in. Their communication at times has been shoddy to say the least (support turning up late with no warning, last minute cancellations, incorrect information regarding rota times and so on). They have also been rather good at times as well, trying to accommodate all the things I need to go to so that I have support for the important things. They are slowly improving on the communication side of things and I give feedback regularly. They have definitely improved in the 3 years that I have been using them. My alternatives to NAS support would be Brandon Trust (Learning Disabilities) or Second Step (Mental Health), neither of them I've heard particularly good things about locally.

 

So yeah mixed experience with them really.

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"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."

 

I get the feeling from this statement that "and there are also mature adults being diagnosed from the first time" has been, as it were, tacked on - almost as an afterthought.

 

The problems experienced by those who were diagnosed as children and have passed through full-time education into the adult world are different from those who went through a considerable period of their life undiagnosed and had to find ways of achieving anywhere near a 'normal' life. This is true even if - on the surface - they've had work colleagues and have found a partner who accepted their oddities, because the problems of AS don't disappear. For those who have never managed a close relationship then after retirement the future can be very bleak.

 

The irony is that the more successful one has been in faking/acting NT behaviour the less likely it is that one will be seen as someone who needs support. The stress of successfully keeping up this facade and the price paid in the development of other illnesses is something 'professionals' can't seem to understand.

 

 

 

 

 

 

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The bottom line I believe, is that they are not going to concern themselves with the newly diagnosed adult AS people, but are going to continue to concentrate on what they have always done, which concludes my belief in them, they are not fit for purpose and they do not represent autism in the UK !

 

And with hope some organisation not so assurely funded will, because the NAS are basically looking after themselves first and foremost, they do indeed exist for themselves sadly. But much of the UK is a sham, so they just add to it all.

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Canopus   

And with hope some organisation not so assurely funded will, because the NAS are basically looking after themselves first and foremost, they do indeed exist for themselves sadly. But much of the UK is a sham, so they just add to it all.

 

The problem all boils down to funding. Many independent AS support groups are struggling to survive financially whereas the NAS receives nearly 90% of a multimillion pound income stream from the taxpayer so isn't really reliant upon donations. This brings into question whether AS support groups can survive without government funding even if they currently provide much better services than the NAS does. Some parents hold the view that half a loaf is better than none meaning that a compromised, and somewhat dysfuctional, NAS straitjacketed by the strings attached to government money is better than no support groups at all, so we should stop complaining and make the most of what we can have.

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There are no NAS services south of Surrey, so I haven't received any benefit from their services. I paid my subscription the year after I was diagnosed and didn't even receive the newsletter. Then they called me up, gave me a huge speech on helping disadvantaged autistic children in schools, and when I pointed out they had my contact details because I had AS their response was "well... We can't possibly keep track of that... Will you still donate?"

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Canopus   

How can we mount a stand against the NAS and hammer home the message that it is a corrupt institution that lets down thousands of people with AS?

 

I have considered starting a campaign to stop the government donating money to the NAS but are the consequences of this too severe for people with classic autism who require expensive to run services?

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How can we mount a stand against the NAS and hammer home the message that it is a corrupt institution that lets down thousands of people with AS?

 

I have considered starting a campaign to stop the government donating money to the NAS but are the consequences of this too severe for people with classic autism who require expensive to run services?

 

And that is the problem for the method is well known;

 

help some to be seen to be doing the job and create a dependence which translates as people who will cry foul on their behalf if they are questioned, because people who benefit tend to be people who wish to continue benefiting at the same level or better for greed is a human condition.

 

The only way to attack such an entity as the NAS is to educate those that benefit from it and hope they will be selfless in order to pull their thinking around to question why so many are excluded so when the NAS is questioned those who would fight for it normally might also question them from within.

 

But I suspect the difficulty those who benefit receive with their claim for assistance is part of the plan- make those people insecure enough so they will not hear of anything which might threaten what they get and so I realise the NAS is not a nut that can be cracked by attacking it, it is too entrenched and too well defended as it also provides the government with the necessary conscience soother in that by funding the NAS they can be seen to be helping autism and not ignoring it and the government will defend the NAS for that purpose.

 

The only way I can see to change minds is to create a grass roots organisation and court publicity by being public with what we can achieve, where industry will take notice if it perceives an advantage and that translates as influenced politicians as politicians only listen to industry and finance and not ever those coming at them with a begging bowl, especially in this financial climate where we need industry to start up again to halt our decline.

 

But for a grass roots organisation to prosper, it sadly needs money and members won't have sufficient personal income to contribute to what they believe in so funding has to be got somehow in order to exist or no matter how good or how useful something is, it will die. But here's an idea, how about creating an organisation aimed at ASD people to prosper via industry, in that seek funding to employ a large proportion of what the NAS figures suggests are the 85 % of unemployed autistics ? As to face it the country needs industry to get moving and funding bodies might look more favourably on those that seek to create industry rather than those coming at them cap in hand and on the want.

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Canopus   

But I suspect the difficulty those who benefit receive with their claim for assistance is part of the plan- make those people insecure enough so they will not hear of anything which might threaten what they get and so I realise the NAS is not a nut that can be cracked by attacking it, it is too entrenched and too well defended as it also provides the government with the necessary conscience soother in that by funding the NAS they can be seen to be helping autism and not ignoring it and the government will defend the NAS for that purpose.

 

I think that the NAS should be fought alongside all the other government funded 'fake' charities. In today's economic climate it is wrong that public money is given to charities whilst services in the public sector are being cut back. A law should be passed that charities cannot be funded by the government. If the government was genuinely committed to providing for ASD then they should be spending the money in schools and the NHS instead.

 

But for a grass roots organisation to prosper, it sadly needs money and members won't have sufficient personal income to contribute to what they believe in so funding has to be got somehow in order to exist or no matter how good or how useful something is, it will die. But here's an idea, how about creating an organisation aimed at ASD people to prosper via industry, in that seek funding to employ a large proportion of what the NAS figures suggests are the 85 % of unemployed autistics ? As to face it the country needs industry to get moving and funding bodies might look more favourably on those that seek to create industry rather than those coming at them cap in hand and on the want.

 

Asperger Technical is currently working on a similar project as part of its restructuring. The only problem is that discussions with senior figures from industry have revealed that a high proportion of jobs which people with AS excel in have been outsourced to low wage countries and the jobs which remain tend to be low skilled with a required physical presence or require good NT people skills like marketing, management, personnel.

 

Globalisation has rewritten the economics rule book. The education system is still reading the rule book printed in the 1980s.

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Yes, that is the thing about this country, we are too expensive and so we learn our skills have been outsourced by our own traitorous industries whilst they say they are proud to be British- pull the other one. But with an unchecked population rising rapidly, more so in the last decade than at any other time since records began, our future, we are screwed and so future government best get used to funding the existence of the unemployed, unless they want starvation and people dying on the streets, but what else comes with that will be riots for Britons by and large are easy going people, but there comes a point where action takes place because backs are up against the wall with nothing to lose.

 

If I knew in the past what I know now, I would have emigrated to the new world as this country is stuffed.

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Canopus   

George Osborne does not understand economics.

 

He tries to force people into jobs that do not exist.

 

He tries to force people into jobs that do not pay a living wage.

 

He tries to force people out of jobs to lounge around back home with mum and dad because housing benefit cuts means they cannot afford to rent a house 100 miles away.

 

His economic policies are more suited to 1912 when there were thousands of factories that couldn't get enough people to work in them.

 

He ignores the work of John Maynard Keynes.

 

This is a snapshot of the type of education that his public school teaches.

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trekster   

About time they got some honest feedback

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smileyK   

Just feel like NAS are such "fake" service that don't do anything to 'support' highlight needs in the community feel like careless about "our lives" just feel can't match up what out there! Trying to live up too!I always have to find out chase up 'everything' all time like can't be bothered! XKLX

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trekster   

It is tiring having to chase people to do the jobs their paid to do.

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Lyndalou   

Stuffed has posted here about his current situation on another thread.

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smileyK   

I feel like all time no information is actually discovered buried underneath a heap mountain of disorganistation mess which leads to endless frustrations! I feel like spinning round with all services that suppose to be 'supporting me'! It just adds to the already difficult issues! :(

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I found no use for the NAS at all, I had hoped they would interact WITH my autistic child, but he ignored them totally and they made little attempt to communicate, in the end they visited our home to 'observe', my child just went upstairs until they went again, there did not seem any point in them, the person who came to my home sat watching the TV or an hour then went. They were never asked back. I get lots of post re seminars, but have no time to attend any of them, I think charities are a waste of time personally. They are too underfunded to provide support of value or, can maintain it, this is a killer, given our children depend on continuity.

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smileyK   

When I went out with support workers more interested in 'other things' like mobile phone texting if had to re-plan due to work commitments as bank staff so rang up unexpected -outta the blue had ring and cancel our NAS out reach sessions never 'happy' about me doing this as didn't fit round their routine not about me my routine /structure which made me so upset anxious even more so! Weren't helpful or consistent or they (two support workers) always phoning up sick not being able to make sessions! ;(

 

* I do totally give up thought service suppose to be supported around our needs our routine! But learnt hard way! Feel crushed as 'no-one' wants to really know or care "if you're coping or ok" anymore! It so bad I had faith in NAS not no more! Feel if adult with AS you're wandering alone out in cold with no service to go however much struggling/battling especially if received a late diagnosis sets back even further! So hard get head around feel rejected no good enough - worthy of being 'supported' in 'right way'!

Edited by trekster

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It's a real shame, but my experience has not been positive with the NAS. I tried to phone them for advice a couple of years ago ... and I really needed some targeted advice. No answer, repeatedly. So I emailed them. Nothing - for a month, and then quite a helpful reply, but it was too late, the moment had passed and I had sought advice from elsewhere.

 

Fast forward a couple of years, and without going into detail, I needed to ask NAS (different department) about relevant research and interest - no response at all. This was about something that could benefit children with AS. Nothing, nothing, nothing ... not even an acknowledgement or 'we can't assist/we're not interested."

 

If I treated the people I worked with like this, I would (rightly) be criticised. Very disappointed and the main reason my membership has not been renewed, I'm afraid. I think they are probably very effective in certain areas, but this provision is uneven and we don't need that ...

Edited by l'anima semplicetta

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lisac   

Thank you for reminding me. It is high time the NAS are shown up for what they really are. 5 years on I am still appalled by their callous treatment of my son.

Edited by lisac

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This is why I object to charities. It is obvious such an considerable amount of support and backing parents and children alike require in depth, no charity can sustain such an support system. It is a case where I think the state should stop offloading charities onto us, so they do not have to honour their moral and ethical obligations to us or our children. In effect they are using charity to take the flak away from their utter neglect of us. Charity grossly underfunded and without professionalisms or training, just make a bad situation worse.... a report by the charity commission just out, said 50% of charities didn't know what they were doing basically, and their trustees were making things a lot worse.. I've cut links with all charities now. which means the 'be funny for laughs' TV effort just is rubbing it in, in my opinion.

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I always get told by other organisations, Prince's Trust, CAB, etc, "go to NAS", but NAS always turn me away. There is also another local organisation that is a copy of the NAS (WAS) and they won't help me either. All these organisations you are told to get help from tell you to go away and go to NAS instead, but what can I do if NAS aren't there to help?

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