NAS... Any good for you?

[troutsprout]

Can I ask those with children with asd ( with or without dx)... Do any of you actually get any help or support from the NAS?
The ' help' courses/ conferences seem to have dried up around here and the only contact we ever seem to have is them phoning asking for money.
Tbh we have had more help and support from Crossroads. Just wondered what everyone else's experiences were?

Well, tbh, that's why most people who want to provide a service set up their own not for profit or charity, and do it that way.

It's a fine line between an immediate improvement in local services for that specific disability, and further depleting available funds on a more global scale though. Not a prefect solution by any means, but a temporary salve.

I'm not defending any particular organization - but I don't suppose any national disability organization is a joy to work for in a paid capacity now, however altruistic your motives on application were. Politics just means everything is being dumped on the voluntary sector, who are, in most cases, valiantly attempting to buffer the cuts and continue services.

I have a great deal of sympathy for the parents of children with disabilities who make the decision to effectively set up a local organization in opposition (whilst theoretically working alongside) but the issues are the same. You have to raise funding somehow. There are only so many people willing to put in a full work week unstintingly on a voluntary basis.

The state sector dumping on the voluntary is nothing new. But it kinda grates when the users focus on the crapness of the voluntary sector, not the reasons they are so crap in the first place (hello state sector).

Of course, the other issue, is that these well meaning folk who set up to provide a service have a great understanding of the specific disability, but often focus on that to the detriment of the admin or behind the scenes work necessary to ensure they are able to continue. Which sucks. Because they are brilliant at what they do, but can't do it because of the admin burden, or fundraising burden, or because they just can't afford the time in a literal sense.

And then we end up with sn top trumps because we are trying to find support for one child in the face of many equally deserving and needy children. (Needy in the sense they need support, rather than any detrimental comment).

Sucks to be me, etc.

My local NAS branch is FANTASTIC. It gets no funding from the national NAS, and the prices of the Help! courses were drastically raised the other year.

My local branch do conferences, days out, support groups in day and evening, lots of day trips, an annual ball, a monthly sensory family playgroup session, a book and sensory resources library, an ASD friendly annual panto show. So many lovely things my DS and I have benefitted from. I take my hat of to the lady who voluntarily runs it as she is also a parent in the same boat and does a wonderful job.

'it kinda grates when the users focus on the crapness of the voluntary sector, not the reasons they are so crap in the first place (hello state sector).'

I DO focus on the crapness of the state sector, the problem is, the NAS defend to the extent that they undermine parents and their arguments/journeys for adequate provision for their children.

They also sell LA's accreditation, and this accreditation hasn't as far as I can see (and I have looked hard) any founding in research or evidence behind it. This also undermines parents trying to get an alternative to what their LA is trying to provide because they are NAS endorsed which means nothing, but is impressive to tribunals.

Absolutely Star. I am not looking for the NAS to provide what the state sector should.

I am looking for it to be a challenging, campaigning, fearless representative of people with autism. Yet the organisation just leaves those in need to support others in need or pursues them for money for crappy Help! courses which provide generic info you could find on google,

What about advocating for gold standard, evidence based treatments? what about disseminating up to date research and developments on their site? What about challenging the status quo as a national organisation?

This has nothing to do with volunteers but the national leadership which is a million miles away from the campaigning group which set it up.

TBH in some ways I admire the local volunteers more, as those who I have spoken to agree with me but STILL do it because a)it is the best they can do and it is better than nothing and b)they hold out some hope that they can eventually tap away at the leadership and improve the organisation from within.

And they do it FOR the parents.

Our local group ended up with a couple of dominant characters who sat on alsorts of LA panels but did very little apart from go to lots of meetings.

Good and bad.

The Early bird course was invaluable.

Advice especially when they phone you back, priceless.

Christmas party, functions and pantomime, wonderful.

Website, ok

Other stuff which I can't mention, pants but can't really complain it is a charity after all better to have them than not at all. I can't believe people are being so harsh!

"I can't believe people are being so harsh! "

Well, it is perhaps because people have different experience and live different lives so think differently.

You are as entitled to your opinion but so are those who voice negative opinions.

My expeirence

Early bird plus course - LA led excuse not to have to undertake SAs as all schools needed was an Early Bird Plus course

Advice - poor through diagnosis and Tribunal

Christmas party, functions and pantomime, wonderful - we don't have the good fortune to have access to any of that.

So perhaps our experiences are different but I would never say I can't believe people aren't more harsh so don't expect others to say vice versa

In bed with the LA . Not great when your LA/PCT is awful. Mentally I've filed the NAS along with caring carrots and chocolate teapots. I do realise that the support offered varies considerably from area to area however. I thought the Help Plus course I did was a tad out of date.

Smaller autism charities such as ambitious about autism, have been amazing imho, offering far more up to date advice on interventions. The Shaw Trust in Wales blew me away with their offerings re employment training for Aspergers and HFA individuals (- especially as they've got companies like Microsoft on board and involved and actively recruiting Aspie individuals.) IPSEA gave me the courage and advice I needed to tackle my LA.

The NAS needs to support evidence based interventions far more instead of supporting the usual "stick em in a sensory room or corridor depending on whether they are high or low functioning and then forget about em". They have a loud voice but aren't out there shouting and advocating as they should, mostly due to conflicts caused by the fact that the state is their largest source of funding.

I also don't get why an organisation of this size doesn't have far more Aspies and HFA individuals on their own staff - after all who could possibly understand the day to day challenges. I find their lack of representation at national level on the paid staff a bit patronising tbh.

I haven't found them very useful.

The website is horrid, hard to navigate and (I've found) you often get to where you want to be to find the advice is (for example) to 'talk to the school's SENCo', which is a bit crap if your SENCo is rubbish or if you home educate. Or speak to your child's consultant (same). They don't actually seem to tell you anything or give any ideas outside of a very narrow range, and if you've lived in the autism world for long chances are you'll know much of what they offer already.

I did lots of Help and Help2 courses and seminars years back and they were invaluable - it's such a shame they are pricing themselves out of existence as a lot of families benefited from them.

I never had Earlybird, I didn't even know about it until I was a long way down the line and knew most of what it covered (from what I later learned from people who'd done it). It would have been very useful though, in the early days.

I find the NAS quite stereotypical about autism and while on the one hand they will talk about everyone having a different presentation, in practice they band everyone into groups, usually based on high and low functioning, and presume they all have the same needs. Somehow every difficulty is a 'sensory issue', whether that's accurate or not. Mind you, that's across the board, not just with the NAS.

Where I live, there is a local branch but as far as I can see the focus is mainly on social opportunities, which is fine in itself but it's not enough to give our children the tools they need to have a place in the world. My son is HFA and has a lot of social opportunities, he doesn't really need more, what he needs is support to make it in life. That's what's missing, both in the voluntary sector and with statutory services. I asked a member of staff about emotional literacy groups at my local group a while back and was met with a vacant expression - she had no idea what I was talking about .

There's a few support groups but they're all based in the next town (and funded by their LA) so we can't access them. But again, they're all based around social gatherings so probably wouldn't be appropriate.

I live in London. My local NAS branch is really poorly run but i do appreciate its run by a volunteer in a chronically deprived area.

The branch in our neighbouring borough is fantastic. Very well organised&welcoming. I found NAS better in the respect of organising opportunities for social interaction/local resources.

The reality is money is the issue...

I agree. The information in their literature is not about money - it's about philosophy and policy position.

Their failure to campaign in a more challenging way is again about mindset. They can run very glossy campaigns when they want (Young campaigners group, stuff about CAMHS) but their target is never the system.

For example, they accumulated alot of very useful info for their CAMHS campaign 'You need to know' or whatever it was called - about the mental health of children with ASDs. But how are most mental health problems probably caused? I would hazard a guess that they are the result of poor support in school. There is no way they would campaign on that.

As i understand it NAS schools used to fund many of their other services e.g. help courses, helplines etc Since the recession fewer LAs have placed children in NAS schools and funds are down hence the begging calls - which do annoy me why fundraise from the very people who need help? But it does raise the question whether they were in effect over charging for their schools to fund other things. Anyway I agree the national NAS is useless policy wise.

I have volunteered on NAS tribunal advice line and the people who give ed. advice are more robust against LAs but sadly that does not cross over into the management hierarchy. The NAS schools are so reliant on LAs. But thats a problem with vol sector all over they get govt contracts and then cant be rude about govt.

I agree with the accreditation being bollocks - I have even told the person who runs the scheme the NAS are shooting themselves in the foot as every SLD school they accredit will mean fewer children who will get to go to asc specific school including their own

i think there are alot of people involved who taught in special schools in the 1960-70s and have an outdated view as to what parents want.

Oh dear my rose tinted glasses have cracked.

Please somebody assure me that the NAS school in Radlett is OK to good otherwise my rose tinted glasses will smash.

Although I do have a cat's chance in hell, of getting my son in there as the Communication Disorders Team said in no uncertain terms, he will not get in.

I looked at NAS school once and thought it looked impressive. I think it's more that the NAS don't argue for the level of intervention children in their schools get for others. Eg suggest watered down version can be provided by untrained staff in mainstream, when it can't and is no evidence to support that. Also NAS accredite LA schools with a sort of quality mark but only assess if they use symbols, pecs etc its a tick box they don't assess the quality of the teaching. Our outreach team want accreditation and will probably get it as they use pecs, visuals etc etc even though they advise them for every child whether they need them or not. I think the schools are quite autonomous and better than LA schools. Which is why I was cross they accredited the local sld school as it will make it harder now to win a place at NAS school.
As an organisation it lacks a clear message. In its schools children get autism specific education but it then promotes eclectic provision for those in mainstream.

Please someone reassure me one way or the other about the NAS schools.

hildy No-one will be able to reassure you because no school is right for every child.

My personal opinion is that it isn't as good as it should be, but it is probably one of the better options in the county you are in. In particular, my impression is that children there don't learn as fast as they could, but on the otherhand their difficulties are understood, reducing the risk of them suffering from mental health problems later in life from years of punishment and abuse in a mainstream non-asd-specific setting. In short, the academic level isn't so high but ther children are safe and generally happy iyswim.

However, my personal opinion comes from considering it for my very specific ds, who is very likely to be nothing like yours.

2006hildy How did you find out about functions, Christmas party, panto etc? I did the earlybird course but never heard anything from them after. Would love to find out how to get info on stuff like this.

Saw this in the Guardian today and it made me think of Agnes' comment about charities not wanting to bite the hand that feeds them.

I haven't found the NAS very understanding of the issues faced by those with severe autism.

I tried volunteering found the national paid staff not very understanding of thew issues faced by those with severe autism As an example when I volunteered I made it clear that my involvement at events was going to be impossible because I have a child with severe autism who cannot access/attend the types of events that were being run - then got a bollocking from a paid NAS manager type for not attending events. We also as a group made it clear that we wanted to get the NAS rolling again locally but that our time was limited, then had more and more pressure to do more (having been told initially that it was fine to have a a big busy active branch and equally fine to have a quieter, signposting type branch) - in reality a quieter branch was not acceptable to them - they should have said that at the beginning and none of us would have volunteered.

So I resigned and stopped my membership and now work with a small local charity which supports people young people with learning disabilities.