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.

That post from the NAS has sent my anxiety levels through the roof. Not only is it slightly stalkerish but it's the exact same tone as their email response. It makes me feel very uncomfortable because it looks like an apology but isn't actually addressing the issue raised.

it's a "let's look like we give a shit" message as far as I can see - no wonder you are distressed, OP. no aknowledgement of the stress it's causing you at all.

OP I feel sad for you getting an email that upset you. But the thought of a child getting an empty envelope instead of a party invite has brought me close to tears! I'm sorry people are so thoughtless and cruel. Wishing you all the very best for a bright future x

YADNBU, I'm so sorry you had such an upsetting experience. Sending love, anytime you are in the north of England you're welcome for coffee! xxx

So NAS, are you saying that you think that was an appropriate email to send to people with social communication difficulties? Really? REALLY?

And that is not an apology. It's an excuse.

I think you should send an email to all your supporters acknowledging that this campaign is horribly ill-judged and that you have demonstrated an absolutely crass misunderstanding of the very disability you're supposed to be supporting.

And then fire your marketing director.

I complained to them a few years ago, when I was a member, as they called me scrounging for more money for an initiative. My complaint was precisely what you're saying, that they have members who actually have ASDs and who are vulnerable as a result of it. Oh, everything's fine, they said, our callers are specially trained

They've been trying to get through to me for a few weeks and I finally picked the phone up on the, today. I told them never to call me again. I mentioned when I cancelled my membership that I was tired of the constant begging for more money.

I'm staggered, NAS that you would do this to a person, and what pp ^^ have said.

It never ceases to amaze me the wording that some of these charities use. I once got a letter and raffle tickets from a national charity whose services we used due to having a child with a disability. I can't remember the exact wording of the letter but it had a picture of 'Mystic Meg' on it and some reference to me feeling lucky - as in buy our raffle tickets and you might win, I assume. However as the mother of a severely disabled small child with a life limiting condition, I was feeling far from 'lucky' at the time and took the wording very personally. I telephoned them and told them so. Don't know if they've changed their marketing strategy as we don't seem to get any correspondence from their fundraising team any more, even though we have continued to use their services for many years and are on their other mailing lists.
The only way to stop the many unpleasant tactics used by charities is to complain, complain. complain. Just not giving or stopping your donations isn't enough - you need to tell them why.
Sorry for your distress OP - as the parent of a DS with HF ASD I can understand your distress.

I have ASD and I got this email from NAS too. I didn't even open it to be honest, I don't know anyone called Lucy or Max so I just assumed it was spam. I do have a child with autism too so it is likely they got my details as a parent with autism rather than as an adult with autism.

I don't know what the contents of the email were as I never even read it. But although I've been affected with autism all my life, I do have friends, and so does my son with autism, and we have social contact with other people outside of family. So I don't think the NAS could have assumed that everyone with autism on their mailing list would be affected in the same way as the OP. For me, it was a bit of a nuisance (and ineffective if it was trying to fundraise), but didn't cause offence in any way.

But I think that the NAS might reasonably have assumed that SOME people might be affected by their email, if they had had their 'pastoral' arm have a look at the hard-nosed fundraising element.

NAS, I also received this email, fortunately I wasn't upset but supremely irked by the fake personal style of the email header, this sort of clickbait type behaviour deters me from donating quite frankly.

NAS I am a supporter of your charity, my son has ASC and your website has been very helpful and useful to me.

But I think this approach of coming onto a forum and singling out someone in this way is ill judged at best and frankly a bit piss poor for the reasons below:

People on this forum in the main like to stay anonymous. We have user names that can be changed for that very reason, so users can post in relative safety their worries and concerns. You have however tracked down someone and forgoing any sense of anomymity they wish to keep, repeated what was in effect a personal communication.

You will know that one of the major co-morbids that occurs with ASC is anxiety. Did you stop to think for one moment that hunting someone down on a forum to push your message would maybe just cause that person to feel uncomfortable and more anxious? Or was your main reason to spin a bit more PR out for your fundraising?

I'm agog that someone in your team thought it was a good idea on here and direct your message in such a way. If you'd read the thread you would know the OP wasn't the only one who was affected by your 'friendly' email, why not address it to all rather than target one?

I didnt get the email, but if i had i would have felt just as bad as you

I know someone who has similar with BHF - emails about how she should be giving more money because otherwise joe bloggs is going to die. Who is now facing a rare and one day fatal heart diagnosis of her own.

I wonder if the cold caller type people who do this could probably benefit from a little more training...

Oh, didnt see that NAS were here. Nice non-apology

Really sorry for your distress OP .

It was actually very ill judged of NAS to come on this thread.

And they have made it worse by doing the old 'trying to sound sincere and caring whilst saying precisely nothing at all'.

NAS listen up. This is Mumsnet - full of highly educated, thoughtful, well-read, intelligent and strong women many of whom have senior positions in marketing, communications, media and charities. Your response sucked and you know it. I'm hoping this is being Tweeted and picked up on but even if it's not you want to sit up and actually listen to what's been said.

Hear, hear Ginmartini

One other thing. Cant really get the words right in my head, but i'll give it a go!

To email members regarding disabling conditions, assuming that the reader is personally unaffected, seems off to me.

I would expect that an organisation dealing with a particular disability would be aware that members could be affected adults, and write appropriately. To assume the affected are your children/family members/whatever, seems to me to infantilise disability, as if you could not possibly be reading the communication if you, yourself were affected.

And as someone who is made to feel a lesser citizen by society often enough, i'd expect a charity specialising in a particular issue to have better insight than that.

I'll also add that if you take the time to read the SN boards you'll find thread after thread stating how isolating AS is, that families and friends don't understand or don't want to know. It's hard enough to ask F&F to give time, never mind money.

I can see the conversation now 'Oh, you know my DS, who you never invite to a play date, and keep your kids away from because you think he's weird, or has meltdowns and can't communicate? Well I know you won't spend 5 minutes in his company but could you give the NAS a fiver a week cos that will change your opinion of him and make your conscious a bit better. Thanks x

And I see that NAS have found and replied to this thread. It's really not an adequate response. It's really not hard to do it better. Be upfront about fundraising. Make the email header something like "We would like to tell you about our new fund raising initiative." OK, it's not as cute and twee, but nor is it so confusing. Don't phone up for a long "friendly" chat then ask for money. I was really annoyed and upset when I was cornered by that and I don't have any diagnosed ASC. Yes, your fund raising staff are trained. In manipulation. Cut to the chase. Or just don't bother.

@the NAS.

I was the person who directed the OP to your supporter care team with the intention of giving you the opportunity to hear what she had to say, reflect on your mistake and make any appropriate changes to your future fundraising plans. The fact that your response is a justification of your methods, rather than an undertaking to reflect on them, is disappointing.

Sending emails that masquerade as personal messages from friends is a pretty low trick for anybody but for those who have a good understanding of the impact that such a communication could have on a person with Autism to defend it is even lower.

I have been a member of the NAS for a number of years but I will now be cancelling that membership. I don't want to support an organisation that has lost its perspective to such an extent that it cannot reflect on it's methods, even when posters tell them they are doing damage to the very people they exist to support.

MK here too, we should all have a meet up . How about IKEA for one of their lovely breakfasts

The NAS has always been one of my chosen charities and I make regular not insignificant donations.

I will no longer do so unless they stop making emails like that look like personal ones and unreservedly apologise to the op without trying to justify such actions.

I also received it and was not thrilled about it

That really was an apology that seemed remarkably ignorant of the disorder they're supposed to get. It reads as if they only support NT parents of ASD DC.