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What has the NAS achieved?

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I tend to agree,the NAS has proven pointless in Wales. The one time the SS paid them to support my son, the NAS rep sat and watched my TV for a couple of hours, never spoke to my son, then left ! After 3 weeks I'd had enough frankly. I'm concerned they are employing/using completely unaware people as support too.

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Never had any direct dealings they have never responded to any emails. They seem to signpost a lot

 

They are opening a free autism school in my area, but will have to see how that all goes next year!

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One of the most frustrating problems I find with the NAS is that whenever I raise the issue of support and services for people on the higher functioning end of the spectrum I find myself up against the parents of a person with severe traditional autism who dictate (for the want of a better description) that their family's needs are greater.

 

I have previously stated that the primary interests of the NAS are residential care services or their own schools.

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Yeah, it seems all they do is send out prepared printed advice booklets, most of which is common sense and sign posting. This might seem cynical but I haven't found them to have been any help since I joined several years ago.

 

I do hate "information" that turns out to be: redirection to "information" that turns out to be: redirection to "information" that turns out to be.... etc.

 

As if people who require support need to be messed around by some inefficient bureaucratic farce that leads to nowhere fast.

 

If I had the energy I'd be a great leader, and solve a lot of problems by eliminating institutionalized stupidity.

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One of the most frustrating problems I find with the NAS is that whenever I raise the issue of support and services for people on the higher functioning end of the spectrum I find myself up against the parents of a person with severe traditional autism who dictate (for the want of a better description) that their family's needs are greater.

 

The problem is that when the NAS was formed it only dealt with children with "traditional autism" and though the organisation itself is making valient attempts to recognize the needs of those on the higher functioning end of the spectrum - and people diagnosed in adulthood - many parents of traditionally autistic children don't want to see a change in the status quo.

 

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One of the most frustrating problems I find with the NAS is that whenever I raise the issue of support and services for people on the higher functioning end of the spectrum I find myself up against the parents of a person with severe traditional autism who dictate (for the want of a better description) that their family's needs are greater.

 

The problem is that when the NAS was formed it only dealt with children with "traditional autism" and though the organisation itself is making valient attempts to recognize the needs of those on the higher functioning end of the spectrum - and people diagnosed in adulthood - many parents of traditionally autistic children don't want to see a change in the status quo.

 

Yes, this rings true for me.

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The NAS has 'wrecked' several independent support groups after taking them over. Parents and members of independent support groups thought that joining the NAS would be more beneficial in the long run than staying independent because of more access to funding, resources, experts, media coverage, and other perks. What has happened in reality is that the groups end up having their agenda dictated by the NAS head office according to their interests rather than the needs of its members. Many groups that once provided practical support and services to people with ASD have been turned into conferences for parents and carers dominated by a handful of people who just want to talk about a few instances of people with severe traditional autism whilst showing no interest in larger numbers of people with higher functioning AS.

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Wow, what a shame. I wonder how this came to pass - Bureaucratic BS concerned with money over all else, I expect. I guess the moral of the story is: "If you're doing something worthwhile, be wary of who you entrust it to".

 

Maybe they need more feedback from the likes us. I subscribed to NAS a few years ago, and never really got that involved, primarily due to my scepticism about their consideration of adults with HFA. I think their website is quite comprehensive, but was uncomfortable with the persistent use of children as examples of autism. (That said, on recently revisiting the site it looks to have been covering adult issues a lot more nowadays).

 

That emphasis on children in general really irks me because these children are destined to become adults; it's short sighted to not present a balanced overview of the autistic population. It's also very frustrating for those of us who feel somewhat invisible and misunderstood by society in 2014. Example: many people (including GP's!) have no idea what the ramifications of Asperger's Syndrome can be. I find the lack of comprehension to be a gross oversight as HFA is not that uncommon. It should of course be noted that the presentation of symptoms is markedly different in adults, thus a little more understanding of the adults situation is welcome.

 

Incidentally, I write this from the point of view of someone who was officially diagnosed with Asperger's in Feb 2013, at age 39, after a really troubled, misunderstood, and confusing, and traumatic life, up until then.

Edited by Tomas

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There's a variety of reasons why independent support groups ended up being taken over by the NAS including struggling financially on their own; lack of awareness by members of the real interests and agenda of the NAS; organisers duped into thinking that the NAS has a mountain of resources to offer them; democracy where the majority of the members of the group want the NAS despite a few wise individuals reliably informing them that a takeover is a bad choice that will reduce useful services, amongst others.

 

The reason why the NAS persistently focuses on children and ignores adults all boils down to funding. About 90% of the funding the NAS receives comes from the taxpayer rather than individual charitable donations, which results in the NAS organising its services in a way to receive the most government funding. There sadly isn't much profit to be made from adults with AS (by any ASD support group, not just the NAS) apart from those requiring residential care services so the NAS provides very little in the way of services for them. This situation is unlikely to change in the forseeable future.

 

In recent years there has been much criticism of the NAS in that it is a 'fake' government funded charity with an agenda of chasing public money rather than a genuine charity relying on voluntary donations supporting the people it should be supporting, or that it isn't really a charity but a quango.

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The NAS started with concerned parents and is now 80% government funded festering pile of excrement. The NAS is deliberately taking on clients that facilities are unsuitable and causes dangerous situations.

 

Eg pilning

 

Further to this unless a mainstream child or an adult with funding- they don't want to know.

 

But for my MP I would have been made homeless- NAS were totally un interested and unhelpful.

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What is the best way of launching a damning criticism of the NAS exposing them as corrupt to the core and a scam organisation? I have a mountain of materials about the NAS I have collected over the years but I lack the courage to publish it because of the potential of repercussions resulting a difficult legal battle. A former (and equally disgusted) member of the NAS firmly told me that I am not dealing with a charity but a quango. Real charities take criticism and only fight legal cases over libel or severe misrepresentation because they cannot otherwise afford the costs. The NAS, being 90% funded by the government, has plenty of smart lawyers ready and waiting to defend the organisation against those who dare to expose its corruption.

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The main purpose of the criticism is to stop people with higher functioning forms of ASD from wasting their time with the NAS. It will provide an insight into how the NAS is managed and what it does and doesn't do. It will also stress that reforming the NAS from within is next to impossible due to the way it is funded. The NAS is a business selling services to councils at its best or a quango at its worst.

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This is very interesting as I was about to attempt to get some support from the NAS. I emailed them with some queries about local services and costs and simply got a reply saying yes there is a cost and with some useless leaflets that didn't tell me anything that wasn't on their website. I did find it a bit strange that not only does using their services cost money (kind of defeats the point of a charity), they do not list their prices for support anywhere on their website. All the local ASD support groups in my area have fees which leaves me with pretty much nil support in a time when I'm getting very desperate. Fantastic news.

 

EDIT: Just seen this on the NAS website.

 

 

  • £10 a month could help someone take that first step away from isolation by attending one of our Adult Social Groups, where they can learn social skills and make friends.

 

How does that £10 a month help someone attend one of their Adult Social Groups if it costs the person money to attend?

Edited by Laddo

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I attend local NAS branch meetings, but I've been seeking support from various local groups for ages. These groups have helped me in various small ways several times, but I've also been sent round in circles many times. Consistent ongoing support, which is what I need, is still something I haven't got. I believe local councils have a legal duty to provide support to anyone on the autism spectrum who needs it, whatever their IQ, but they're ignoring this - so what do we do next? Take them to court? With each passing month it gets more and more frustrating. :wallbash:

Surely the NAS should be doing something to ensure that local authorities comply with the Autism Act.

Edited by Mihaela

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Do you have to pay for support from your local groups Mihaela? A friend who lives in Birmingham said she does not have to pay for support from Autism West Midlands. I'm wondering if it's just around London and the south east that you have to pay.

 

It seems as if you can only get help for something as long as rich, usually white and male people in positions of power decide you're worth helping. Everyone needs help and support, yet these days it seems like it is only really possible to get support if you are deemed 'vulnerable'. I think so-called 'high-functioning' aspies don't qualify as 'vulnerable' because, well, we're 'high-functioning' - according to people who don't even have an ASD, we can function fine in society

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No, I don't pay anything. I couldn't afford to anyway, but I'm not yet getting support that they think I'm entitled to and need. I not only feel vulnerable, but I am vulnerable, and have been exploited and bullied all my life, both by individuals and officialdom. Now that my parents have gone, I have no-one to protect me so I'm keeping clear of all strangers. Now that I know that I have AS, people are beginning to believe me at last (that's other than my parents, who always did).

 

Crucially, the Autism Act makes no distinction between 'high and low functioning' people, yet as you say it may as well do, for us late-diagnosed Aspies are being swept under the carpet. Perhaps they're waiting for us all to die off. :(

Yes, I'm so-called 'high-functioning' but only intellectually. My thinking patterns cause my executive dysfunction. Emotionally I'm like a 12-year old, socially, I'm pretty dysfunctional. I coped with all of these disabilities quite well as long as I had support from my parents. All I ask is for support with my executive function - bills, money, dates, etc.

Something needs to be done about the way we are being ignored. Why aren't the NAS pushing for the Autism Act to be followed? Why aren't those organisations that flagrantly breach their statutory duty being prosecuted? What's the point in having this law if they're getting away with pretending we don't exist?

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It seems that the only place where one has to pay for autism support groups is here in the south east. I think I need to move away. After all, there are few suitable jobs for me outside of London (which is too expensive to live in, too dangerous, too much noise etc). I just wish I had the money to do it. I'm vulnerable too, very much so, but most of my life I have kept up a 'tough guy' act to hide it. I don't have the energy to keep it up any longer though. People do target people with autism unfortunately, seeing as easy targets as we can rarely defend ourselves. It doesn't matter whether we're higher or lower functioning, we're still prone to victimisation. It's not just the late-diagnosed ones that are being swept under the rug - I was diagnosed when I was 7 or 8 but because I am 'high-functioning', I am apparently capable of coping fine in the world. This is not the case at all. I can barely look after myself and need occasional support. It seems that all adults with autism are ignored unless they are non-verbal and require 24hr support.

 

You hit the nail on the head there - 'high-functioning' refers only to intellectualism without taking into consideration how one copes with day-to-day life and thus is a misnomer. My executive function elsewhere is poor and like you say, I'm emotionally much younger than my physical age. Just because I can learn facts with ease does not make me actually high-functioning. I am low-functioning in most aspects where it actually matters.

 

I have a theory that the Autism Act was only passed to 'shut us up' - that it is only there so the government can pat themselves on the back and stop up pushing for more support and recognition. Governments do love to help out their buddies in the top business positions and I imagine nothing is being done about the constant breaches of the Act for this reason. In the eyes of the government, business and money are God and upsetting big business is akin to blasphemy. I really want to do something to make changes, I just don't know what yet and don't have anyone to support me in this. It's a shame it is so difficult to organise meet-ups for people with ASD otherwise I would love to try and get more people interested

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The independent support groups are not funded to the tune of millions by the taxpayer like the NAS is so they rely on funding from people like you and me. Don't expect much positive from councils because they are known to be crass and incompetent when it comes to providing any services even as trivial as repairing street lighting and emptying rubbish bins. The Autism Act barely touches people with higher functioning forms of ASD. Part of the problem when it comes to higher functioning forms of ASD is that those in power are unclear as to what services need to be provided whereas it is much clearer when it comes to traditional Kanner autism which is why there are more and better services for this faction. My own view is that the NAS is clearly unfit to provide support for people with higher functioning forms of ASD and should focus on low functioning autism like it used to do before AS became known about in Britain.

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The NAS doesn't need to be unfit to support people with high-functioning ASD though. Much of the support that can help with classic autism could also help with Asperger's and other high-functioning autism; it would just be to a lesser degree. Charities can and are able to support more than one type of a condition - Cancer Research is involved in research into several types of cancer, for example. I think a large part of the problem stems from NAS not listening to its own members as well as it should. I wonder if someone with ASD would ever be considered to be on the board of directors for NAS. It might help them understand our situation a bit better.

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The NAS doesn't need to be unfit to support people with high-functioning ASD though. Much of the support that can help with classic autism could also help with Asperger's and other high-functioning autism; it would just be to a lesser degree. Charities can and are able to support more than one type of a condition - Cancer Research is involved in research into several types of cancer, for example. I think a large part of the problem stems from NAS not listening to its own members as well as it should. I wonder if someone with ASD would ever be considered to be on the board of directors for NAS. It might help them understand our situation a bit better.

Take my word for it because it comes from years of experience and inside sources. The NAS is incapable of providing effective services for people with higher functioning ASD. The main reason is due to the way that it is funded. The NAS is not a charity in the true sense of the word. It is a quango. If the NAS was funded by voluntary donations from the public then it would be a completely different beast.

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Yes, that may be the case now but things can change. With a large enough pressure campaign who's to say they can't be backed into a corner and forced to let a qualified autistic person on to the board of directors?

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Yes, that may be the case now but things can change. With a large enough pressure campaign who's to say they can't be backed into a corner and forced to let a qualified autistic person on to the board of directors?

That is very wishful thinking. The NAS chases public money and there is next to nothing available for people with higher functioning ASD compared with that available for residential care services for people with low functioning autism or kids that are material for the NAS special schools.

 

Only if the public money is completely halted by the government do reformers have a chance to get their foot in the door. Otherwise they are wasting their time.

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I'm hoping for bigger change than just in the NAS. I'm hoping for cross-party government recognition of all forms of autism, from classic autism to 'high-functioning'. That way the NAS may just allow autistic people in its decision making and hopefully other organisations will follow suit in seeing the value of autistic employees

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I'm hoping for bigger change than just in the NAS. I'm hoping for cross-party government recognition of all forms of autism, from classic autism to 'high-functioning'. That way the NAS may just allow autistic people in its decision making and hopefully other organisations will follow suit in seeing the value of autistic employees

You can live in hope. I think the mature view is that it is something outside of the scope of central government nowadays. Remember David Cameron' s Big Society?

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Well people are entitled to the opinion that nothing will ever change if they want. I just think it's overly pessimistic. If the suffragettes had taken that view, I doubt women would have the vote today. I personally would rather fight for change than just let people walk all over me. You say that is an immature view; I call it progressive.

Edited by Laddo

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I'm not a pessimist at all. I have concluded that change will come from society rather than from central government or the NAS.

 

The lack of clarity what people with high functioning ASD want means that those in power don't even know what to provide. Independent support groups often provide better services to people with high functioning ASD than the NAS does although their services are very localised. This could be argued to be society in action with the potential to provide a template to government organisations.

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All progress towards a more civilised world has had to be fought for, and many sacrifices have been made. If we don't fight, the wealthy and powerful elites will always try to keep us subdued and subservient. I'm struggling alone to get myself heard - not easy, frustrating and tiring. So what can we do together to get ourselves heard as a group? How do we organise?

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So what can we do together to get ourselves heard as a group? How do we organise?

We could make a start by publicising the NAS for what it really is and why it is almost impossible to reform.

 

My experience of parents of kids with high functioning ASD is that they fit into 4 categories.

 

1. Those who don't know much about the NAS but want to go along with it.

 

2. Those who know how the NAS works and its deficiencies but believe it can be reformed from within.

 

3. Those who know how the NAS works but have given up with it as they have come to realise the difficulties of reforming it and know that better support is available elsewhere.

 

4. Those who have had no or very little involvement with the NAS.

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We could begin by getting a website up and running at least. I'm teaching myself HTML and CSS but so far it has been a slow process with other distractions getting in the way. We need to get some aspies who are skilled at web design and who care about these issues to get a website up and running

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We could begin by getting a website up and running at least. I'm teaching myself HTML and CSS but so far it has been a slow process with other distractions getting in the way. We need to get some aspies who are skilled at web design and who care about these issues to get a website up and running

That's the easy part. There are already plenty of websites and people skilled at web design so you don't have to worry about this side of things. The difficult part is as I described in #13 of avoiding any potential legal battles with the NAS and their smart lawyers out to sue anybody who dares to write bad about the organisation and its senior officials for defamation. The media isn't on our side either. I have suspected that the NAS has friends in the media ready to give them positive vibes and vilify any critics.

 

A few conspiracy theories exist as to why the NAS got involved in AS and other high functioning ASD in the first place. If the NAS just stuck with traditional autism then nobody from the high functioning ASD communities would have anything to criticise them.

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You are probably right about the NAS's lawyers, although their lack of support for high-functioning autism could be approached subtly to avoid any legal action being taken. As long as the organisation's name is never directly mentioned, I don't think there is a lot they can do. The mainstream media is on no one's side apart from themselves and big business. They do seem to have a particular problem with autism though - I have noticed that whenever someone with autism commits an atrocity, their autism is always referenced. A good recent example is a 17 year old who was obsessed with Dexter - he murdered his girlfriend, cut her body into pieces and wrapped the parts in plastic, just like Dexter does in the programme. It is an absolutely sickening story and not at all typical autistic behaviour, yet the media described the killer as autistic. What is the point in mentioning his autism - considering it has nothing to do with the murder - if not to subtly incite hatred against us? It is just like whenever a muslim commits a crime, their religion is always referenced by the media, yet they never do this with criminals who are Christian, Jewish, Sikh, Hindu or any other religion. The mainstream media is borderline evil and fascist. Sorry to rant, I just had to get that off my chest. Anyway, there are alternative media sources out there. If we can get some of them on our side, we might be able to make a difference, even if it is only small.

 

That's interesting about the conspiracy theories. Do you know any details of them?

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Talking about web sites? I am an old computer programmer, last language I used was Perl with HTML, apache backends, and of course on a 'unix' platform, I think today it would be Red Hat Enterprise or BSD.

But really is yet another site on this subject needed? I have never heard of "NAS" and if their territory is classic autistic, why go on about them. Organisations that try to be purely charitable have a tendency to fail one way or another. Trying to do good often goes awry, tears are bound to happen. People are the weak point in any organisation. If a computer system could on its own run such a setup, the results would be, well, dependent on what it had been programmed to do, if a 'self learning' system, it would come to the conclusion that people are the problem and come up a way to solve the problem.

Trust this nonsense upsets nobody, apologies for the interruption.

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As long as the organisation's name is never directly mentioned, I don't think there is a lot they can do.

Doesn't that defeat the whole point of an exposition of the NAS as what it really is and really does?

 

The mainstream media is on no one's side apart from themselves and big business.

The NAS is in effect a big business that sells services to local authorities.

 

They do seem to have a particular problem with autism though - I have noticed that whenever someone with autism commits an atrocity, their autism is always referenced.

I have wondered from time to time whether there was an underlying reason for all the media coverage given to Gary McKinnon. Was it intended to tarnish the reputation of people with AS or create stereotypes?

 

That's interesting about the conspiracy theories. Do you know any details of them?

I'm keeping them under wraps for the time being until I have collected sufficient concrete evidence to back them up with.

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Doesn't that defeat the whole point of an exposition of the NAS as what it really is and really does?

 

Nah, not necessarily. It can be written in such a way that strongly hints at the NAS but doesn't actually use their name, for example: 'National charities for autism claim they have support and services for high-functioning autistic adults as well as parents of children with classic autism. However, evidence suggests users with HFA are being let down blah blah etc etc'

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I'm not ignoring this topic and some very good points have been made. I just need to think about it more before I make my comments. The whole subject of NAS politics is new to me. If the NAS isn't delivering the goods, then perhaps a new organisation devoted to adults with Asperger's should be set up.

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An observation, most people with the high end version of ASD either will never want a diagnoses, or will never be suspected. Its possible if all goes well or not too badly to live completely without this dubious tag.

 

Also more obvious high function ASD's are perceived as being 'tiresome' even by others on the scale.

 

People afflicted by this vary quite a bit, it will never be a case of those on the lower end' running the show. People on the boundary between being on the ASD scale and NOT, who will have too, and most likely a few minutes with the more typical middle range of Aspirer's and they will forget all about it! Really a more 'difficult' group of people I can not think of. That leaves entirely the commercial psychiatrist led type of operation, a few of these exist already and struggle.

Economic reality has to be faced up to, someone has to make an income from it, so that they have some reason to put up with the people on this spectrum.

 

What I have said is not very helpful to well meaning dreamers. Sorry. I have lived in the real world.

 

 

Edited by trekster

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Well meaning dreamers? I find that quite patronising and rude. I have lived in the real world too. I've experienced emotional abuse from a parent, have been inappropriately touched by a doctor while being assessed for Asperger's, bullied a lot at school by both pupils and teachers, witnesses alcoholism in my stepdad, experienced alcohol and drug addictions, struggled with depression, anxiety and suspected bipolar all my life, have a worsening curvature of my spine which may eventually lead to me not being able to walk and already causes numbness in my legs at the age of 23 and was in an abusive relationship to name a few of the bad experiences I've had in life. Everyone has to deal with bad things in their life, everyone. Does that mean I should be pessimistic, not bother trying to change, even go on about my bad experiences all the time? No. That is no way to live. Life is full of horror but also full of beauty. More beauty can be achieved through change. I have noticed that through all your pessimism you ignore the fact that things do change for people, things do get better. Women have the vote which they didn't have 100 years ago and although there is still raging gender inequality going on, women are more respected in our society than ever. Same goes for non-white people. What exactly does endless pessimism achieve? To me, pessimism is one of the ultimate forms of selfishness - a kind of 'Things haven't gone well for me so they'll never go well for anyone. I want everyone to feel as bad as me blah blah blah'. I am choosing to enjoy life, despite all the negative stuff it throws at me.

To be honest Waterboatman, your negativity about so many things and the way you can get quite rude to people you disagree with is starting to put me off coming on this forum. You don't have to bring everyone else down because you're unhappy with your own life

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