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Here are some suggested organisations that offer expert advice on SN.

NAS - anyone a member?

(28 Posts)
fiduciarydealings Thu 02-Jun-11 13:20:18

I have misgivings. Is anyone an active member? I have been involved in a local branch but I am tiring.

It seems to me they are very much part and parcel of the system and in some ways present yet another obstacle. For example, the LA here used the existence of an Early Bird Plus course as a reason not to undertake a statutory assessment of a child of a friend. It seems the course is offered, stamped by the NAS, as a way of circumventing the need for specific intervention with lots of generic strategies while passing on high expectations of schools to parents e.g. 'your school could have a sensory room or do x,y,z' etc - all out of its own budget of course.

Also, here the ASD outreach team for the LA also seems to be connected closely to the NAS regional office. Pumping out more generic stuff. No need for specific or individualised assistance. Just keep banging on about theory of mind.

Now, I'm not against awareness raising and generic strategies but it seems to me that it fails to campaign on some very key issues e.g. school problems are not just about awareness raising, they are about money and statementing practices. CAMHS is not just about 'you need to know', it is about complete indifference, poor quality local provision, inadequate funding, lack of expertise etc.

Am I being too cynical?

smileANDwave2000 Thu 02-Jun-11 13:47:48

no i had no idea they did that but was that deliberate ie they know in advance if say x does one of these courses it makes things harder for rl assistance not easier , or have i misunderstood that

IndigoBell Thu 02-Jun-11 14:03:55

You're not being cynical.

My friend has just set up a local branch of dyspraxia support group - and was told by the national org she was not allowed to endorse or make any recommendations.

What is the point of a support group if she can't recommend real stuff that works?

And I've been equally disapointed by the BDA (British Dyslexia Assoc). Which is just about selling their services.....

So, yes, I'm sure the NAS should be used with caution......

silverfrog Thu 02-Jun-11 14:11:34

the area we were in when we did Earlybird used Earlybird as a reason to withdraw: SALT, SALT input at preschool, and tried for Portage too.

we threatened to withdraw form Earlybird, as would rather have the other services - lo and behold they were reinstated hmm

no idea why it was so important that thr Earlybird box was ticked back at services HQ.

the NHS thing is just odd. they do have a history of putitng apositive spin on things, and glossing over stuff like challenging behaviour etc. there is a large cohort of "don't try to cure us" amongst the membership, I believe. obviously fine if you/your child is funcitoning reasonably well in the first place...

the NAS also has an accreditation Award which is paid for by LEA special schools, and then used at tribunal against eg a request for ABA.

I looked around an NAS ASD school and was Not Impressed (and not just form a "not ABA" pov)

it's an odd organisation.

fiduciarydealings Thu 02-Jun-11 14:31:05

Interesting, Silverfrog. The EB Plus course was very much 'change the environment and not the child' which I can understand BUT you do have to 'skill' the child to function in a world which is difficult for him/her and I don't see that this features at all.

I also had a strong feeling of resentment to a course which presumes to tell me about 'these children'. My DS has AS but he still needs to be guided and assisted and have the 'real world' explained to him so he can cope. That's the type of intervention which costs money and I am sure the course is well-meaning but it just feels like it is now used as a replacement for proper intervention with the child.

silverfrog Thu 02-Jun-11 14:35:19

quite. I totally agree with "change the environment" but do not totally agree with "but not the child"

even in a changed environment, dd1 cannot go around sniffing people's bottoms.

or run up to them, kick them, giggle and say "don't kick people"

or a million other little things we have "changed" about her - both social and behavioural.

if I hadn't intervened and changed dd1 she owuld still be a stimming, biting, kicking , non-verbal child. so where is that line drawn?

<obv in my first post NHS should have been NAS>

fiduciarydealings Thu 02-Jun-11 14:52:23

I agree. Understanding why a child acts in a certain way, or that a child needs to act differently is completely different to writing them off with a pat on the head and not seeking to alter anything about the behaviour which compromises their ability to function. You can still provide and teach skills without changing the essential 'you' in the child. It's what we do with all children to a certain extent.

I just got the feeling that it is cheaper to preach a message of letting the children get on with it (without having any real idea of what to do about truly difficult behaviour).

I just disappointed that there seems to be a 'disablising' perspective- perhaps necessary to get that initial 'hidden disability' message across. I don't want DS to grow up thinking he can say 'I have AS, so I don't understand other people, and that's why I'm rude to you, it's not my fault'. That's just patronising and disempowering. DS gets loads of support and understanding for his difficulties and does not get told off, but he does get told 'we don't do that, say that etc as it is rude, it is better to say......x,y,z'

That's why children need early intervention and I just feel the NAS message can undermine this, especially when it can be so closely tied to the LA. Why have an intervention for primary school children which ignores the fact that schools cannot and will not do most of the things suggested without extra cash. The problems with that approach became very clear on my course.

LeninGrad Thu 02-Jun-11 18:51:11

Message withdrawn at poster's request.

BakeliteBelle Thu 02-Jun-11 19:25:05

It never seems to be relevent to those with severe autism, although they do appear to part fund a special needs cinema club in our town which is fantastic for children with severe disabilities. For that, I am endlessly grateful to the NAS

niminypiminy Thu 02-Jun-11 20:06:24

I'm a member. Not so much because of what it can do for me and mine (although I did earlybird plus and found it quite useful), but because of what it does for people with autism more generally -- especially in its campaigning work. The Autism Act would not have happened if it had not been for NAS. And that Act might not be perfect, and we may be a long, long way from seeing the provision it calls for in place, yet it is the only piece of legislation on the statue book to address the needs of adults with a specific disability. I think it;s wrong to judge the broad spectrum of what the NAS does by one particular aspect of its work.

niminypiminy Thu 02-Jun-11 20:09:23

Just to add: I support the NAS with a regular donation because I want people with autism to have a public voice, I want there to be a campaigning organisation that speaks truth to power about the needs of people with autism, and I want there to be a resource that offers information and support to people with autism, their families, carers, workmates, teachers and so on. Even if it is not perfect (how could it be) it is there, and that is worth supporting, in my view.

LeninGrad Thu 02-Jun-11 20:20:44

Message withdrawn at poster's request.

niminypiminy Thu 02-Jun-11 20:31:12

Early Bird Plus is for school age children (up to age 8, I think). In my area it was run jointly by education/NHS (specialist teaching team, specialist nurse on autism team at local CAMHS). The key thing is that your child's school is asked to send a representative (either teacher or TA) and this is funded so as far as I know they normally do attend. That is what made it invaluable for us -- the TAs (school sent two) were trained, and we had 24 hours or so in which to talk about DS1 with them.

LeninGrad Thu 02-Jun-11 20:36:38

Message withdrawn at poster's request.

fiduciarydealings Thu 02-Jun-11 20:41:14

niminypiminy - thanks. I'm sure you weren't intending it to be a dig, but just to reassure you, I'm not in this for 'me and mine' either actually. Indeed, as well as donating, I have actively helped set up a branch here and I regularly run support groups single-handedly as there is absolutely no other support system in this area. These groups attract parents from a variety of backgrounds with children with a varying levels of disability.

So, I speak from the coalface and not just on a single issue. I think the EB Plus side of things is simply an illustration of stagnation which borders on undermining collusion with a damaging status quo but it is perhaps indicative of a developing 'establishment' mindset which is perhaps inevitable with such a large and powerful organisation.

I am speaking out loud but I do think that it is perfectly acceptable to challenge the status quo if you are out there actively trying to do your bit to make things better.

To be honest, I am starting to feel the 'establishment' mindset is reflected on many fronts, and not just the EB Plus, including the campaigning front. You mention campaigning but what has it achieved of late? Where did the expensive CAMHS campaign go? What about the new Academies/Freeschools? Last I heard they were being supported by the NAS. What about the SEN Green Paper? Why don't they campaign on school related issues and the appalling tactics of many LAs rather than kick CAMHS?

I agree that the Autism Act is helpful but it is an exceptionally limited piece of legislation and I am not sure single disability legislation is the most effective way to change practice if we are to achieve progress for more than just 'me and mine'

Sorry, but my question arose because I really do not see very much evidence of an organisation that "speaks truth to power about the needs of people with autism".

And although I agree that no organisation could be perfect, I feel it's not about perfection , it's about perception and direction.

LeninGrad Thu 02-Jun-11 20:45:28

Message withdrawn at poster's request.

fiduciarydealings Thu 02-Jun-11 20:46:40

EB Plus do not fund schools to send a member of staff in my area although, perhaps that is an area to area difference.

My frustration with the course was not just the contents of the manual but the fact that everyone there had numerous school related issues which their TA generally had no authority to solve.

The staff were very nice and supportive (both from the LA) but provided numerous examples of what they expected schools to do as a matter of course. However, in the real world, schools cannot generally run to the type of strategies suggested without statementing.

It is expected that schools tick the EB Plus course box here before applying for a statement

fiduciarydealings Thu 02-Jun-11 20:47:19

Early Bird is different to EB Plus and is for pre-school children. School staff do not attend

fiduciarydealings Thu 02-Jun-11 20:48:49

Early Bird is different to EB Plus and is for pre-school children. School staff do not attend

LeninGrad Thu 02-Jun-11 20:54:12

Message withdrawn at poster's request.

niminypiminy Thu 02-Jun-11 21:01:18

Fiduciarydealings -- I agree that NAS walks the corridors of power and appears comfortable doing that, and I also agree that some of its campaigns are directionless. I think they are working on the SEN green paper, but as far as academies and free schools go they are in a bit of a double bind, aren't they -- I mean, as a providor of independent special schools they could actually benefit from the free schools initiative.

I guess there's no way to walk the corridors of power and not get, well, at least changed by that. What's the alternative though? Staying pure on the outside? I do think though that NAS needs dissident voices being a thorn in its side (sorry, horrible mixed metaphor), and from that point of view, I absolutely agree with everything you're saying.

re EarlyBird Plus I did think the corporateness of it was a bit odd and made it pretty monolithic -- the tutors have to do it exactly as they are trained by NAS and they can't change it to reflect the needs of the group doing the course.

But I have to say I did find the TA thing really helpful and we used the time to set up things that could be worked on both at school and at home. It really did seal for us the sense that the school wanted to be a partner in DS1's development. Btw, LeningGrad DS1 had no dedicated hours when we did the course -- it was before we applied for statutory assessment and it did partly function as a box that we had ticked before SA. But for all its shortcomings I am still really glad we did it.

LeninGrad Thu 02-Jun-11 21:07:52

Message withdrawn at poster's request.

niminypiminy Thu 02-Jun-11 21:10:14

No, mornings, school had to give TA time off to attend it (actually they sent 2TAs bless 'em)

LeninGrad Fri 03-Jun-11 20:34:22

Message withdrawn at poster's request.

cansu Sat 04-Jun-11 12:59:43

I am a member but only in that i pay the member ship fee./ Mainly because I( have used the telephone helplines and also had some help with a tribunal through their education advice line. I am very disillusioned with the local branches as they seem to see themselves as signposters rather than as providers of services. I want to see them running holiday clubs etc and not just producing newsletters. Having said all that my son attends an NAS school which has had a massive impact on his life. I would really like to see them running more services and showing what good practise really is.

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