It really annoys me, my brother has CMT and there is a weekend expecally for him and he found his gf there who also has CMT.
I have High functioning Autisim and there is nothing for us, no weekend meetup that takes place every year. Wouldn't it be great if we could atcually have something like that, i might of met a girl if that had happened
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.
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.
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.
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.
StephenHarris 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.
Sorry, but what is CMT?
Also, are you on Meetup at all? There are groups on there for people with high functioning ASD.
