National Autistic Society UK/Your comments please?

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Evening everyone. I would like very much to know what help people have had from the National Autistic Society?

Thank you

www.jelibean.com

I like that group. There is an organisation where I live that is owned by the NAS and it's called NSAAA (North Staffordshire Autistic/Asperger's Association) and they're pretty good as well. The year I was diagnosed I got some books and videos from the library there and I went to some event where they had a meal at this restaurant and all the members and their families were there.

Thank you Monkey. And has that help continued? What support do you get/need now? How could life be better? Thanks

I don't really have much to do with them now. I was a member when it was a new thing for me because I was still learning about it.

Ok great thanks Monkey. Anyone else? Good? Bad? Indifferent?

And in an ideal world if you as a parent or as an autistic could have a wish list of help. What would it be?

I haven't had a lot of help from then as far as I know, but it's probable I did when I was younger at some point.

The last time I remember my mum mentioning them is when she had to fill out the DLA form and the NAS site had pages helping her to do it.

I like the National Autistic Society and their new capaign to help us get employed too. They stand up for our rights and even speak against Autism Speaks.

I've always said that when I start getting a decent amount of money I will donate monthly to them, and I will stick to that.

My experiences with them have been mixed:

Initially they disappointed me.......I asked them to itemise what help they could give me as a newly-diagnosed Aspie, and they ducked the question. They would also sometimes take several weeks to reply to my emails. And they recommended that I got a NHS diagnosis to supplement my private one, as they felt that the private DX might not carry enough weight with benefits adjudicators. But a private DX is just as valid as the NHS version, and I felt that they should be working to force the bureaucrats to accept that fact, rather than trying to get Aspies to get two DXs.....what would happen if the NHS DX turned out negative?

So I was pretty much convinced that the NAS was just a "chimeric" organisation which only gave the appearance of giving help, when in practice they were of little real value. But then I had my Disability Living Allowance claim rejected by the Department of Work and Pensions. The Citizens' Advice Bureau proved impossible to contact (phone lines permanently engaged), and the deadline for an appeal was getting very close. So I emailed the NAS about it, with very little hope of a timely and useful reply, and was amazed when they replied promptly with some sound advice, which allowed me to send the DWP a letter containing further info supporting my case and requesting that they reconsidered it. The case continues, and it isn't looking very promising, but without the NAS, the deadline would have expired and I'd be twiddling my thumbs wondering what to do next.

My wish list of help as an Aspie (what's betting I don't get them? ):

1. An autism awareness teacher to talk with me and my employer so that proper, specific adjustments for my disability might be made, instead of just cutting me some slack here and there, which is pretty much all that has happened since I told my employer of my condition.

2. A very client-centred cognitive therapy coach to help me find working solutions to my AS-related problems.

3. An advocate to help me pursue my claim for Disability Living Allowance, and to acccompany me to meetings with health professionals, authority figures etc. to help ensure I don't always get fobbed off with nothing because of my autism.

4. A proper answer to my question to the NAS - i.e. a comprehensive list of the help they can give to an Aspie.

5. Mandatory recognition of AS disabilities by job centres and employers, so that we have: a) the right to turn down any job that involves "Aspie-unfriendly" duties, without loss of benefit, and
b) the right to resign from any existing job which expects said duties, followed by a fast-track lawsuit against the guilty employer, leading to reasonable compensation.

6. A statutory, no-quibble monthly benefit payment to all Aspies, to be paid until such time as item 5. above is fully implemented.

7. Prime-time TV programmes teaching autism awareness to the general population, stressing in particular the importance of accepting us as we are......this could include movies or drama with Aspies in the roles of stunningly attractive alpha-heroes who save the human race from all its problems and are revered by the general population.

I've had nothing but positive benefits from my contact with the NAS!

My first contact with them was to find out about the social groups they run and whether or not I could join one/if there was one in my area.
There is a group right here in my city, I joined up and it's been brilliant!! There's a whole range of us who go to it, we get on good together and we really enjoy seeing each other and catching-up every month.
We have one person from the NAS who's the social group co-ordinator (and 2 people who volunteer). I can't speakly highly enough about her, she is just a brilliant person, she books everything for us, makes sure everyone is okay and involved, and she's just all-round brilliant in the way she communicates, but I have found that to be true with everyone in the Scottish NAS I've been in touch with, and also the Welfare Rights people.
It's also a good mix of people. The youngest is 17, and the oldest is in his early 50's. Some are non-verbal and others (like me) hardly shut-up!
We pay our own way, and have different activities every month that we pick beforehand ourselves at a planning meeting. Then we get sent out a proforma that has all the info in it, where the venue is, what everything will cost, times and contact details (why can't the NT world be this clear and concise all the time!)

I've also contacted 2 other 'bits' of the NAS; the Welfare rights people (I'm also having benefit issues, I was refused Incapacity Benefit and I'm mid-appeal but it's been nearly 8 weeks since I retured the appeal and barring a letter telling me it has been received I've heard nothing. The benefits people are TERRIBLE!) I outlined my problems and got a really long and useful email back from them with lots of links to help me out, and advice telling me what I had to do, which I have done, how to write the appeal, I will probably get back in touch with them if I don't hear anything from the benefits-people soon as I'm confused by this all.....

I've also contacted Prospects, again they have been great, though I haven't actually met them yet as I have postponed my first meeting as I had a job interview recently and I want to wait to see if I get it first.

Anyway, yes, I can't fault them they've been a great help to me, one thing that sounds out to me time and again in my communication with them is that I don't feel awkward or stupid like when I'm trying to talk to 'normal' people.

I think they need to be directly embracing the implementation of personalisation into social care provision through the UK more strongly. At the moment there are bits and peices of the autism bill which are being knocked off here and there to save money and it irks me that they don't appear to be mounting a more sophisticated challenge lobbying or campaigning effort to maintain the act in its original state.

I can understand why they are not doing these things. Top heavy organisations with a management heirarchy will be at a disadvantage when they compete for providing services if the new government policy of personalisation outlined in Valuing people now is to be fully implemented

But then again I think quite a lot of the big charities are in for a big smack in the teeth with this change if its simply forced through

Personally speaking they were little help towards me when I most needed them to support me in a case that was recognised by the Equality and human rights (formerly Disability Rights Commission) as a blatent act of discrimination by a locum occupational health doctor preventing me from continuing to train as a learning disability nurse. In the end I won the argument without it being dragged out in a court of law but in the mean time their prospects service was not helpful to me at all. I was effectively made unemployable and my previous employer wouldnt touch me once they found I was "permanently unfit to be a nurse" on the grounds of having aspergers syndrome. And I thought such an organisation would provide help to someone in this kind of predicament.

Fundamentally speaking though they are and will continue to be a middle class parents organisation not an advocating organisation which it sometimes likes to pretend it is. But the other charities are guilty of that as well such as Mencap calling itself "the voice of learning disability" I think some people with disabilities would say otherwise

I wouldn't mind being able to refuse aspie unfriendly work. It's a royal PITA bouncing from job I can't do to no money to dole again. Hmmm, maybe I should try and get a dx.

Sadly the world doesn't owe you this as far as the job centre is concerned your being paid by the state to find work and if you find it to turn it down and pick n choose is not an option

Yeah, I'm well aware. Just joining in the wishing aloud. Sorry for disturbing the thread.

NAS have been a great assett for me.

I first approached them when i found out i got a diagnosis of autism to understand about autism is. They have helped me understanding how my disability affects me and helped me to come to accept its the way I am and the autism will never go.

They have given me useful information on things such as what is friendship and what isnt, how to explain what autism is to people, etc.

they have given me so much opportunity because of them i have learnt to deal and accept my autism, can write about it, talk about it in documentaries and i have tried to make my life a little easier of finding ways to communicate across to people during groups, during bad times.

No need to apologise My wish list was rather pie-in-the-sky in the first place but there's no law against wanting. And it's so illogical of the benefits people to pretend AS doesn't exist......sure, they save a bit of money, but the social unrest and misery (not to mention the gazillions of appeals that wouldn't be necessary if they'd just consider the initial application without prejudice) probably costs society more in the end. Keep those appeals going in folks.

I think appeal is all we can do....seems to me this whole benefits rigmarole is becoming endemic amongst auties and aspies once again I personally see these refusals as tantamount to calling me a liar...WHY WOULD ANYONE DELIBERATELY WANT THIS SORT OF A LIFE????

Theirs is not to reason why; theirs is merely to deny.

I keep telling them that I can't cook a main meal, and I've supplied logical, AS-related reasons why I can't, and all they do is tell me I don't qualify because as far as they're concerned I don't need help to cook a main meal. So yes, they're calling me a liar. There seems to be no point in plausible argument. They're probably waiting for me to send them reams of corroborating documents from "persons of high standing," which I simply don't have.

It's high time there was a crackdown on benefit cheats, and I don't mean the claimants, I mean the bloody officials.[/RANT]