Members of the NAS - are you glad?

[hereidrawtheline]

I am just about to phone up to join the NAS. Really just to support them as a charity as I appreciate the work they are doing and that I am benefiting from it. I was just wondering, if there were others here who were members, and if so, do you find it helpful to you & your families on a more personal level than the charity aspect of it?

thanks for your perspective on it. I am going to join regardless as its still supporting a charity that supports me. But I was curious how other parents benefited from it themselves.

They also run some really useful courses for parents of ASD children. Membership well worth the money.

strange question that reveals my true character

Do the NAS do Christmas cards?

sorry that wasnt meant to be a link!

I am on the phone joining now!

yes they do. They have a good range, some Thomas the Tank Engine for kids, some with art work by ASD adults. We used them last year.

oh good!

I like to plan ahead

I just joined up me and DH on a joint membership - it was only a total of £25 a year which I thought was quite reasonable... I just assumed it would be more like £35 or £40 for a joint membership.

I don't find it useful and I think they desperately need to consider how they offer support to families of children at the severe end of the spectrum. I've found even their paid workers to have little understanding outside AS/HFA and I recently wrote to them after I found a pile of rubbish written about severe autism on their website (haven't looked to see if they've changed it).

I have been a member up until now (so for 6 or 7 years) and will probably renew this year as I'm a student so it will be £5, but I don't know whether I will again. I can see the use of having a national organisation that represents autism, but I think they really need to get their house in order and work out how they're going to represent everyone.

They also need to sort out their database, it is shockingly bad.

Always worth distinguishing between unpaid NAS volunteers and paid NAS staff. If you have an active local branch run by unpaid volunteers it can be great.

I have been a member for many years and feel there are two aspects as already mentioned - getting help yourself and supporting a worthwhile charity. They get a lot of slagging but I think they are really good considering just how much needs to be done! They are quite influential with policy makers and often get Autism specified separately to "disability" in motions, papers etc. They run a lot of initiatives such as Helplines, Befriending, Adult Employment svs, Earlybird & Help!, conferences, training, schools and services and branches (run by volunteers btw). They aren't perfect but, apart from anything else, the NAS is the place policy makers, media and others go to for info and quotes etc so best to be part of it. I read their magazine from cover to cover and have got lots of good info out of it, not least DS's respite service we used for some years, I had to tell our Soc Svs dept about it as they didn't know!

I think the NAS has such a high profile that's is irreplacable even if it has faults. I do think that the articles/editorials emphasise HFA/Aspergers whereas the adverts are for respite/restraint seatbelts/chewing tubes etc. I'm in the middle at the moment (not relating to either) but still an avid reader.

Their website STILL says:

"Some people with autism may not speak, or have fairly limited speech. They will usually understand what other people say to them, but prefer to use alternative means of communication themselves, such as sign language or visual symbols."

I have told them TWICE now that this is wrong. I think I'm going to have to write to someone high up or perhaps Communication.

I work with severely autistic kids, I have a severely autistic kid, I take issue with 'usually understand what other people say to them' and even more issue with the word 'prefer'. Being non verbal isn't a bloody lifestyle choice.

It's been that sort of constant cock up by the NAS that has slowly pissed me off more and more tbh. From the local befriender organiser (so paid) who chose someone for ds1 because 'she likes to go to coffee shops and is looking forward to taking him' (WTF? what planet??), to the NAS worker who insisted the committee had to have a phone number available to take evening calls to offer support (there are 4 of us, - we all have very challenging children and several of us work full time) - and when we said it was impossible to talk when the children are around were told to tell the children to stay out of the room . Right in the beginning I tried to get some info from the helpline and had one question ignored and one question answered incorrectly. The national organisation strikes me as shambolic in places, although I know there can be some good local branches.

I can see the advantage of having direct access policy makers and some of the things they do (schools for example) are good. But even the Help courses have left me . I mentioned to someone that there didn't seem to be many (actually any) suitable for those of us with children at the severe end of the spectrum and was told the guy who organises them thinks that we don't need as much help so we don't need courses. Now without getting competitive that's a pretty shoddy answer and makes me think I'd be better off looking to Mencap for representation/support & given them my money.

have found the phone helpline helpful