Why nothing for us!!!!

ClaireHig said:

For example those wishing to home educate their child can currently be told to get lost.

The NAS considers home education as a very last resort and offers no specific support or services to families who choose to home educate.

I know about this. I was home educated during most of my secondary school years.

laddie49 said:

When conducting my own research into my own condition I was advised by NAS to look at the Research Autism website where articles were listed investigating the causes and symptoms/treatments for autistic related conditions. At that time NAS were not involved in any research themselves.

Today, having read this thread, I revisited that website and note Research Autism is being absorbed by the NAS and will spend its remaining research grants on completing work in hand but not start any other research in its own right.

The first time I visited that website I noted that a company called Axis recruitment agency was listed as a major sponsor of NAS. Their purpose is to recruit health and social care staff on behalf of clients. Not sure if this includes the NHS or not.

I admit being surprised by that at the time. There seemed to me to be a potential conflict of interest between a charity and a professional recruitment agency.

Research Autism was a registered charity like NAS. Not sure if this is relevant to this thread but I offer the information anyway.

NAS is a charity charged with supporting those with autism. Some may question the appropriateness of it supporting a charity that conducts research into the causes of autism. Because such work is bound to study from pre-birth. Even if this doesn't include defacing aborted infants, you have to question what if science does find a cause? What if they find a way to diagnose us pre-birth? It would then just become another test promoted by the state. As a way to abort those of us less likely to become high earners. Parents often don't wish to invest resources in children they hadn't planned to exist. What when that includes us? Just as the down syndrome test is used to encourage parents to abort them. Research can be a bad thing & lead to killing us off before birth. I feel we should have a right to life.

I can only find evidence of NAS spending on 'education'. Of course that isn't even education in the legal use of the word. That's education in the state sponsored form of schools. For example those wishing to home educate their child can currently be told to get lost. As money set aside for education is only accessible via school. Despite the fact the law doesn't even dictate that education must take place in school, with teachers etc.

The spectrum is so diverse. It includes those who can function with some adjustments & those who can't even cope with daily living. Professionals don't help by labelling Asperger's as high functioning. This implies that the person can function well & won't be severely affected. Yet in my case I can't even function in my flat, I have sensory overload every few hours from normal day to day things. I can't even think of going out. And after my diagnosis I was just abandoned by professionals. It was as if they were given a green card to assume I'm not affected.

I rarely went out as a child, only to school to be bullied daily. I went to a training college &  had a few short lived jobs in my 20s. The worst time in my life. I was blackmailed by my mother who charged me rent & I couldn't get any benefits. Because I was forced to conform & suffered in severe distress through it all, I wrongly present as someone who is able to function. Professionals won't accept the difficulties I have just doing day-to-day things. And I've never even been asked if I have any difficulties. When my GP did a report for my benefit claim a few years ago, she did it without even telling me. And just put that I can walk, take care of my day to day living etc. They just assume all is well, even if they've been informed via letters that it's not.

There isn't even any support from my GP. They demand I go in to see them or speak via phone. All things I can't do! And citizens advice demand this too. So I've been unable to access them. There are no welfare rights officers where I live. My local authority has never let me have a social worker for myself. Though they have sent one for my child, who abused me. They only offer adult social care assessment, claiming if eligible they will provide a budget. But it turns out that budget is just your own DLA. Which they just want to take. My DLA was stopped by DWP when I couldn't get to an assessment in April 2016, so I couldn't even do that anyway.

The system is far too harsh now. Not everyone who seems 'normal' can function. This system is the reason I'm now sat in a filthy soiled blanked from my last blackout & no GP will even see me. I have no money to regularly change my bedding, buy a washing machine or pain relief. Of course I know if everyone didn't work the country would collapse. But I literally can't work. And I'm being charged a lot for natural resources such a fish/heat/water, all things that nature decided should be free. All land & resources raped from nature by the state, polluted then sold to us.

NAS15840 said:

That’s your opinion, one has to wonder why you’re here on the forums of an organisation you hold in utter distain and seem intent on trying to paint it in a bad light whilst not in possession of the full facts.

We have to take the rough with the smooth. It would be seriously biased to restrict forums posts to positive vibes about the NAS.

1. Are you a member of the NAS yourself?

2. What advantage do you see for the NAS (from their point of view) to continue to provide services for people with AS and other high-functioning ASD when for years on end they have done a generally poor job of it and treat such people as low priority cases? 

Arran said:

I think...

...but I don't actually know!

Quite, exactly the same as you "think", "believe" etc. there's nothing wrong with that, we’re all able to draw our own conclusions, but you can’t pick someone else up on it if you’re doing the same. 

Arran said:

It is a question of ethics. Should a person charged with a terrorism offence be 'abandoned' on the grounds of public opinion but it's acceptable to support a person charged with computer hacking? This is regardless of the amount of evidence against them and whether or not they claim to be innocent or guilty. I have talked to lawyers who represent people charged with terrorism offences and they say it takes a lot of courage and conviction to practise this area of law. Public opinion is rarely on their side and they are targets of harrassment.

There is balance to this though, he wasn't denied representation, he wasn't denied a diagnosis, he wasn’t offered help by a charity, something that they are perfectly at liberty to do.

Arran said:

I would have been much happier with the NAS if they were honest and upfront about why they were unwilling to support Talha Ahsan rather than just ignoring him and deleting critical posts on this forum.

They can’t come out and say that they are unwilling to support someone because they are an alleged terrorist any more than they can come out and say they support someone because “it’s only hacking”, they have to make a decision if it’s in the interests of the charity and the wider group they offer services to, if it is beneficial in the long run and if they think that ASD was in any way relevant to the case. They made a decision not to offer assistance, they were in possession of all that information, you clearly wanted them to act differently.

Arran said:

IMO the NAS is a deceptive, sneaky, dishonest, and potentially corrupt organisation.

That’s your opinion, one has to wonder why you’re here on the forums of an organisation you hold in utter distain and seem intent on trying to paint it in a bad light whilst not in possession of the full facts.

When conducting my own research into my own condition I was advised by NAS to look at the Research Autism website where articles were listed investigating the causes and symptoms/treatments for autistic related conditions. At that time NAS were not involved in any research themselves.

Today, having read this thread, I revisited that website and note Research Autism is being absorbed by the NAS and will spend its remaining research grants on completing work in hand but not start any other research in its own right.

The first time I visited that website I noted that a company called Axis recruitment agency was listed as a major sponsor of NAS. Their purpose is to recruit health and social care staff on behalf of clients. Not sure if this includes the NHS or not.

I admit being surprised by that at the time. There seemed to me to be a potential conflict of interest between a charity and a professional recruitment agency.

Research Autism was a registered charity like NAS. Not sure if this is relevant to this thread but I offer the information anyway.

NAS15840 said:

I think the difference there is that McKinnon was "just" hacking, whereas Ahsan was connected with terrorism, that's something that virtually no charity would want to go anywhere near, being seen to support someone allegedly connected with terrorism could quite easily destroy a charity (or any other kind of organisation).

I think...

...but I don't actually know!

It was clearly evident that Gary McKinnon had committed a serious crime, he had admitted it, and he could have been prosecuted and jailed in Britain under the Computer Misuse Act. In contrast, Talha Ahsan only had allegations of terrorism against him, he said he is not guilty, and there was insufficient evidence to convict him of terrorism or soliciting murder in a British court of law.

There were plenty of people out there who strongly believed that the NAS should not have supported Gary McKinnon on the basis that he was clearly guilty of committing a serious crime.

I believe that there were issues of popular opinion at play. Gary McKinnon may be a guilty man but hacking into government computers is a somewhat tolerable action for a geeky individual with AS. In other words, the majority of society views him as a loveable rogue rather than a criminal. Talha Ahsan only has allegations against him without any evidence to convict him of terrorism, but the majority of society thinks that there is no smoke without fire, so had already concluded that he is a dangerous terrorist.

It is a question of ethics. Should a person charged with a terrorism offence be 'abandoned' on the grounds of public opinion but it's acceptable to support a person charged with computer hacking? This is regardless of the amount of evidence against them and whether or not they claim to be innocent or guilty. I have talked to lawyers who represent people charged with terrorism offences and they say it takes a lot of courage and conviction to practise this area of law. Public opinion is rarely on their side and they are targets of harrassment.

I would have been much happier with the NAS if they were honest and upfront about why they were unwilling to support Talha Ahsan rather than just ignoring him and deleting critical posts on this forum.

IMO the NAS is a deceptive, sneaky, dishonest, and potentially corrupt organisation.

I find it deeply questionable that charities should (be allowed to?) act as government service providers. If the government is willing to spend money on ASD then it should do so through it's own institutions like the NHS and state schools rather than through charities. Therefore the function of the NAS would be to act in an advisory capacity to the government and its institutions about ASD but not actually provide any frontline services itself.

My own cynical belief is that:

1. Providing government services through a charity is a way of circumventing Freedom of Information because it only applies to government institutions and charities are exempt from FOI requests.

2. The NAS prefers the status quo because otherwise there would be less money for six-figure salaries of it's senior officers and to spend on glitzy events.

Arran said:

I'm not sure about any connections or deals struck between the NAS and the DWP, although there is anecdotal evidence that the government has the NAS over a barrel after refusing to support Talha Ahsan, but at the same time supporting Gary McKinnon, whilst they were both awaiting extradition to the US.

I think the difference there is that McKinnon was "just" hacking, whereas Ahsan was connected with terrorism, that's something that virtually no charity would want to go anywhere near, being seen to support someone allegedly connected with terrorism could quite easily destroy a charity (or any other kind of organisation).

If NAS are receiving millions from government then they must be getting it to perform government duties. They are working for gov & not for us. Such as trying to get more of us into work. Giving the money with strings attached means it can't be used for other purposes.

There will be "strings attached" to part of it, but the way many charities operate with the government is that they are commissioned to provide a certain service, so a lot of the commissioned services are respite, residential care and schooling etc. So yes they can’t use earmarked funds for things they aren’t earmarked for, they can use donated funds to do whatever they want.

Because NAS is a charity people assume it will be given to those who need it most. When in reality it probably goes to those who can provide the best return such as education/ work, so government will get a return on it.

I’m not sure people do assume that, but regardless of that I would say that a non-verbal severely autistic child needs assistance far more than someone with higher functioning ASD (such as myself) who regardless of finding certain things strenuous can manage day to day and won’t starve or walk off and get lost without constant care, there is no return on that kind of care.

There is also a getting people into work scheme, many large companies have signed up for this because of the different kind of insight people with ASD can bring, because of the skills (especially coding and pattern/trend spotting) that we can offer and in various surveys assistance in getting into work was one of the top requests from ASD adults.

The more who are forced into work with autism, the more it's being ignored as a debilitating condition. DWP don't even accept that autism could prevent someone getting to ATOS offices.

I wouldn’t say that people are being forced into work, but those who can work should, those who can’t should have assistance. From what I know it’s not enough to just claim that an ASD diagnosis stops you from working, or that means you can’t go to an assessment, but I know people who’ve had special dispensation given through medical professionals (although I also know a friend who’s in a wheelchair who was told he had “missed” an appointment and was trying to get hold of them on the phone, when he was waiting outside the building which could only be accessed by stairs so I think it does depend on your area and who’s involved). ASD can’t and shouldn’t be used as a blanket diagnosis with all ASD individuals declared fit or unfit for work, it’s a spectrum and it has nuances, the implementation of the current system leaves much to be desired. Part of the problem actually comes back to the medical definition, ASD is now such a wide diagnosis, it ranges from someone who is non-verbal and can’t feed or cloth themselves, to someone like me who is fully independent, works, pays the mortgage and runs a company, through to people who are at the absolute genius end of the spectrum, those people need treating differently, some have no needs other are utterly dependant.

And they scrap our benefits. There's much less help to fight for needed benefits. Help to access benefits is still only in the form of charities, who can refuse to help. Even though benefits are needed to survive! Help to access benefits should be mandatory. People can live without a job, but not without money!

There are plenty of organisations that help people with benefits, Citizens Advice are brilliant at helping in those cases. The benefits system is designed to function as a safety net but because of that it has to have various qualifications, it can’t hand out taxpayer money just because someone says they should get it, it has to be proven that those people are in need of receipt.

You say people can’t live without money, but one of the best ways to get money is to earn it, that’s why the aim is to get people working rather than being funded by the taxpayer. There is also help to access benefits, the information is available online, there’s loads of support from Citizens Advice and NAS and others offer assistance as well, admittedly it’s not an in your face offer, but the help is there.

The NAS are effectively a government service provider more so than a charity in the traditional sense. MattBucks is absolutely right that almost all of the government money comes with strings attached or is designated for specific people who require specific services. Usually those towards the more severe end of the spectrum who require residential care services.

I'm not sure about any connections or deals struck between the NAS and the DWP, although there is anecdotal evidence that the government has the NAS over a barrel after refusing to support Talha Ahsan, but at the same time supporting Gary McKinnon, whilst they were both awaiting extradition to the US.

If NAS are receiving millions from government then they must be getting it to perform government duties. They are working for gov & not for us. Such as trying to get more of us into work. Giving the money with strings attached means it can't be used for other purposes. Because NAS is a charity people assume it will be given to those who need it most. When in reality it probably goes to those who can provide the best return such as education/ work, so government will get a return on it. The more who are forced into work with autism, the more it's being ignored as a debilitating condition. DWP don't even accept that autism could prevent someone getting to ATOS offices. And they scrap our benefits. There's much less help to fight for needed benefits. Help to access benefits is still only in the form of charities, who can refuse to help. Even though benefits are needed to survive! Help to access benefits should be mandatory. People can live without a job, but not without money!

NAS15840 said:

the difficulty and it will always be trumped when it comes to funding is that one requires help, the other doesn't.

1. If you think that people with AS and other high-functioning ASD don't need help then why does the NAS even (pretend to) include them within their territory at all?

2. People with AS and other high-functioning ASD do need help and support but it won't come from the NAS.

I therefore request that the NAS does the honest thing and gets out of AS and other high-functioning ASD.

Replying to the ghost in the machine I agree with the funding issue, it's a difficult one and it's probably a tight rope that they walk regularly, NAS is very parent centric but that's how it was created so I can't really argue with that too much.

I agree on there in effect being two different sets of requirements, one from parents and the those at the severe end of the spectrum, another from those of us with Asperger's/Higher functioning Autism etc. both have different priorities, needs and wants, the difficulty and it will always be trumped when it comes to funding is that one requires help, the other doesn't.

Has MattBucks been to an autism social event, or a parents group or any other event where he might meet adults on the spectrum and see what they have to cope with?

I have Asperger's/higher functioning autism myself so I have a reasonable understanding of what adults have to contend with, at least when it comes to my own experiences. I know where I've struggled, where I've found ways around things coping mechanisms etc.

I realise that in spite of, but actually more likely because of my ASD I've done reasonably well in life, I'm in my early thirties, I have my own house (and so my own space when I need it), don't struggle to pay the mortgage, own car, money isn't an issue and I can function in day to day life, even if I regularly find parts of it (social interaction being a big one) burns me out very quickly, but I can function on a daily basis. Sure I find some people difficult to deal with, but I do have a small group of solid friends, a great family who accept me for who I am (even if they don't understand me) and I'm physically fit and in good health.

I also have a friend (who I got to know through going to watch England play football) who has a son with quite severe ASD so I've seen the difficulties that they face on a daily basis. I'd much rather that any money was spent on him rather than me, I don't need it, he needs all the help he can get as it's very unlikely he will ever be able to live independently. 

I'm not asking the NAS to provide services for people with AS and other high-functioning ASD. If they lack the will and the desire to do so, or it does not fit into their business(!) model, then they should be honest and upfront about it rather than just pretending.

I'm thinking about launching a campaign to pressure the NAS into getting off the AS and other high-functioning ASD bandwagon completely as that will then open up an avenue for a new organisation to be formed to support people with these conditions.

The NAS currently functions as a web of deceit and a roadblock towards founding an organisation that will genuinely support people with AS and other high-functioning ASD.

The reality is that when money is concerned the NAS is trying to cater for very dissimilar conditions.

We are kind of lower priority. Many of us can function in society and even get employment; others have difficulty even talking.

Considering the NHS' mess at the moment, we're not like to get much help here or anywhere else.

In that case the NAS should just be honest, come clean, and get off the AS and other high-functioning ASD bandwagon altogether by reverting to its roots and concentrating on providing services for a small number of people at the more severe end of the spectrum who require residential care services or children who fit the criteria for NAS run schools rather than playing a cruel game of deceit and deception by superficially making claims that they are also for people with AS and other high-functioning ASD.

As a person who has experienced the near total uselessness of the NAS for people with AS and other high-functioning ASD, and how they are useless because of their desire to chase public money to spend on completely different people, then my perception of the NAS is that they are one step away from a charlatan or a con-artist. Yes, it really is that bad.

It breaks my heart to find a child or adult with AS and other high-functioning ASD referred to the NAS by the NHS or the education system when there are often more suitable and effective organisations out there for them. Has the NAS entered into some agreement with the NHS or the education system to be its sole provider for ALL types of ASD?

A high proportion of people who come to my local AS support group have only done so after a disappointing experience with the NAS rather than directly.

How limited is limited? According to the 2015 - 2016 NAS Annual Report:

Total income £98.7m. 

Income from donations £6.3m.

84% of all income from statutory bodies (the government).

It is probably safe to say that the total income for the NAS is greater than the total income for all other ASD organisations in Britain put together.

It's probably safe to say that most, if not all of the government allocation has significant strings attached, these have also got much more prescriptive post Kids Company. That funding will be provided on the basis that it is used for specific services for those at the more severe end of the spectrum.

It could be argued that the NAS is less of a charity, in the traditional sense of the word, and is more of a government service provider. IMO if charities receive more than a certain percentage of income (about 25%) from the government then they should be forced to deregister as charities and become businesses instead. 

Why though, what’s the point? If they don’t declare a profit and try to issue a dividend then they won’t function differently, apart from having considerably less oversight.

The income from donations is a drop in the bucket of the total NAS income. This raises questions whether it is actually worthwhile for people to do fundraising for the NAS or whether the money would achieve much more for people with ASD who are currently poorly served by the NAS if it was instead donated to another smaller ASD organisation.

It depends how you look at it, in some ways it is, in others it isn’t. Fundraising is also about raising awareness, those additional funds also allow the NAS to do things outside of its government mandate, without those it can’t work in other areas, similarly its operations wouldn’t be significantly impacted by the loss of the funding from donations. Similarly cancer charities despite claiming to fund research haven’t made a major breakthrough and Oxfam’s delivery percentage is pitiful. If people feel it’s worth it then it’s their choice, if you don’t then there is no need for you to do so.

£235,395 was raised in Word Autism Awareness Week 2015. This is several times the total annual income for my local AS support group. What has the NAS spent the money on?

It won’t have been spent specifically on anything, it will go into general funding, some of it eaten away by admin costs etc. the best way to look at it is a small contribution to everything that the NAS does, rather than try and allocate it to a specific project.

It has been argued many times over the years that the NAS is only interested in chasing public money by prioritising services towards a small number of people with traditional Kanner autism who require residential care services or children who fit the criteria for NAS run schools.

NAS was originally an organisation set up for and by the parents of children with ASD to help allow them to help their children, that’s where it’s model, goals and ethos has evolved from. It is trying to target and help those at the most severe end of the spectrum (or “Kanner autism” as you call it), its raison d'être isn’t helping those who can already cope, it’s helping those who can’t.

There is virtually no public money available for people with high-functioning ASD who do not require residential care services or fit the criteria for NAS run schools. This is why the NAS only offers the minutest crumbs of support to these people along with sweet but hollow words.

That’s the way of the world, public money/funding is there for those who can’t manage without it, it’s a safety net for those who would otherwise fall. The NAS offers services to those in most need, to those who it’s specifically funded to offer services to and the rest it will offer what it can.

 You seem to want “freebies” either funded by the donations of other, or funded by taxpayers, whereas most people (myself included) would say that if there is a limited amount of funding available (and it is limited, no matter how much people might try and claim otherwise) then you target that at where you can do the most good and at those who without assistance wouldn’t be able to look after themselves. The idea that we should be spending money on some form of ASD dating club rather than on helping those unable to leave their own homes is one many people would find objectionable. 

NAS15840 said:

It's a charity, it has to do the best it can with limited funding, that generally means helping where it can do the most good, for those who face the hardest situation, it's not there to help people get laid.

How limited is limited? According to the 2015 - 2016 NAS Annual Report:

Total income £98.7m. 

Income from donations £6.3m.

84% of all income from statutory bodies (the government).

It is probably safe to say that the total income for the NAS is greater than the total income for all other ASD organisations in Britain put together.

It could be argued that the NAS is less of a charity, in the traditional sense of the word, and is more of a government service provider. IMO if charities receive more than a certain percentage of income (about 25%) from the government then they should be forced to deregister as charities and become businesses instead. 

The income from donations is a drop in the bucket of the total NAS income. This raises questions whether it is actually worthwhile for people to do fundraising for the NAS or whether the money would achieve much more for people with ASD who are currently poorly served by the NAS if it was instead donated to another smaller ASD organisation.

£235,395 was raised in Word Autism Awareness Week 2015. This is several times the total annual income for my local AS support group. What has the NAS spent the money on?

It has been argued many times over the years that the NAS is only interested in chasing public money by prioritising services towards a small number of people with traditional Kanner autism who require residential care services or children who fit the criteria for NAS run schools.

There is virtually no public money available for people with high-functioning ASD who do not require residential care services or fit the criteria for NAS run schools. This is why the NAS only offers the minutest crumbs of support to these people along with sweet but hollow words.

Arran said:

Also, are you on Meetup at all? There are groups on there for people with high functioning ASD.

It's disgusting that an organisation funded to the tune of millions expects that the people it should be providing services for have to resort to using Meetup.

[/quote]

It's a charity, it has to do the best it can with limited funding, that generally means helping where it can do the most good, for those who face the hardest situation, it's not there to help people get laid.

There are ways for ASD people to meet people just as there are for normal people, hobbies, shared interests, internet dating etc. but there also has to be a strong dose of realism, if people aren't willing to engage with others and expect someone else to do it for them then it won't work as a relationship anyway. 

I'm single at the moment, I've been in relationships in the past, I think I'm perfectly capable of having a good relationship if/when I meet the right person, I just tended to end up with the wrong people in the past.

In the past I've met people through shared interests, photography, watching sport, music, yes my Asperger's makes me socially awkward but having a shared interest makes that a lot easier, it's something that I'm passionate and knowledgeable about, that I can talk to someone about without coming across as a total weirdo.

I’ve been hit on when out with friends and that direct approach I find incredibly uncomfortable, I don’t really engage in that way and I find it straining, we all have to find our own way, but a group of people all there because they have ASD, I can’t really see that working any better (and almost certainly worse) than a group of people who can’t pole vault.