in thinking the National Autistic Society should know better and to complain loudly?

[PissedAS]

This morning I got an email from 'Lucy, mother of Max' titled 'Fancy a coffee?'. I was so surprised. I couldn't think who Lucy or Max were but assumed it must be one of the mums from DS's nursery. I was very excited, opened it up only to find it's fundraising spam from the National Autistic Society.

Why would they do that? They have my details because I've had dealings with them because I am autistic. Like too many autistic people I've never had a friend. Ever. I've never been invited for coffee. Never been to a party other than family, and they often forget me. I've spent my whole life alone, apart from DH and DS. I am crippled by loneliness.

I'm finding it quite difficult to write this without bursting into tears. I think they've done a really shitty thing. Surely they of all people should know better than to use imaginary offers of friendship in this way. It reminds me of school when party invites were given out and I'd be given an empty envelope and then be laughed at.

So the NAS didn't come back then...

Oh and PissedAS here's a virtual from me, sorry I can't be in Sweden to give it to you, but I'll have a chat with you anytime

The NAS was set up by parents back in the early 60's to get help for their learning disabled autistic children aka classic Kanners autism.

Lorna Wing's one of the founders had a daughter called Susie who had classic autism. Lorna and her husband John were both psychiatrists in 1956 when Suzie was born.
Thus the NAS began as a much needed support for parents.
Check out his [[https://www.youtube.com/watch?v=nRSs_WDmsV0 1974 NAS video]

Aspergers work was not translated into English until around 1992.

I do not think NAS is great with Aspergers generally and especially Aspergers adults because their modus operandi has been to help parents n children not grown Aspies.

This is shockingly poor and I am equally unimpressed.

I have just returned from holiday and just received the email which bothered me enormously.
My 18 year old son has a friend called Max. Getting an email which I thought referred to his friend was extremely annoying - I was just pleased that I hid it and he didn't see it.

A stupid and ill thought out campaign and a non apology is worse than ignoring upset people.
I will certainly reconsider my dealings with the NAS .

No-one on here is disputing the good work NAS do, it's their approach to fundraising that has got people's hackles up.

And right on their home page it clearly states that 'We are the leading UK charity for people with autism (including Asperger syndrome) and their families, not the other way round.

Yep. If they want to deal only with parents of children with the most severe ASD then that is their perogative.
But its not what they claim to do right now.

What a poorly thought out marketing email. I too am irritated when I receive what look like personal emails that turn out to be spam (I had one from Ed Miliband last week ), it is natural to feel disappointed. Obviously this would be a hundred times worse if you are socially isolated, and worse still if you have autism and find it challenging to socialise.

And what a meaningless non apology, and how thoughtless to do it via mum$net. My mind boggles at their insensitivity.

TheMummalo

You're giving the NAS too much leeway there. Remember that Dr Lorna Wing was the one who publicised Hans Asperger's forgotten work for an English-speaking audience in 1981, in a paper called Asperger Syndrome: a Clinical Account. It is thanks to her that his work was translated properly in 1992.

Dr Wing and her team were also the first to identify autism as a spectrum disorder.

As a mother of a severely autistic son I would say the NAS are dreadful in their hounding of those with autism. I begged them for help when DS was younger, nothing, not an ounce of compassion. My sister ran the marathon for them, my best friend organises charity events where she works for them.

They phone up regularly telling me about autism and asking for money. Bloody cheek!!!

Trust me the NAS isn't great with low functioning either!

What an insensitive and cynical fundraising e-mail and then what a bizarre and cack handed non apology from the NAS (I'm assuming that post was from one of their representatives given the details included) who the fuck thought posting that was a good idea? Two massive PR own goals! If they'd have handled the OP's complaint sensitively and discretely and taken on board the very valid issues she's raised then who knows she may have come back and posted favourably about their response, instead they wade in to a MN thread and make themselves look like total fuckwits.

I'm not surprised you were upset OP, they have been incredibly thoughtless and I would have reacted the same way you did. Then for them to post on here just shows how inept they really are. Wish I was in Sweden to take you for coffee to let you vent properly.

I had the same email on April 13th, but the title was "Join together with your nearest and dearest" And guessed it wasn't a personal email, but had it said "Fancy a coffee?" I think I would have been sucked in.

IsItMeOr I felt like you about the dress up to fundraise for NAS.

One thing DS1 really hated was dressing up at school. On one occasion I just kept him at home because it was all to much.

The suggestion was bizare IMO.

Trust me the NAS isn't great with low functioning either!

Agreed. Much of what they offer suffers from being too generic. Yes, they have helpful snippets, particularly about some of the legal stuff (though I've noticed they've pared back some of their DLA advice, so it's less detailed) but the most really useful information I've found, when I've been at the point f tearing my hair out about something has been from the Challenging Behaviour Foundation. I don't think they're widely known and I only stumbled across them by accident. And, even though the advice is primarily aimed at dealing with CYP with LDs, it's really useful in my dealings with DS1, as well as DS2.
www.challengingbehaviour.org.uk/

Neither of mine will dress up, either. DS2 associates particular clothes with school and is confused by any significant variation. DS1 just hates it and becomes extremely anxious about the whole thing, days before. He copes a bit better with others dressing up at his specialist school than he did at the local primary, but it's a much smaller environment with more holistic support and there's no uniform for people not to be wearing, which makes it easier for him.

Tunna - given the pasting NAS got for posting on here in the first place (rightly) I think it's a good thing they haven't come back and continued to aggravate their first offence! But no doubt they're reading...