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Original poster

So are only threads celebrating autism allowed?

380 replies

daisy5678 · 05/05/2009 18:14

I am really truly sorry that the poem upset people and I didn't like it.

But I am so so so furious that the thread has been deleted and I wonder what is next...if someone writes a post saying that they are upset with their child's autism dx, is that deleted as disablist? If I write a post saying that I hate something to do with what autism does to my son, will that be deleted?

Like I said on that thread, one person's reality is not another's. One person's autism is not another's. To ban anything that dares to suggest that autism can actually be quite shit just seems to me to make those who find it hard to cope with feel like they're weak or stupid not to celebrate the great joy that is autism.

Or maybe it's me that is wrong to find this wrong, and to find life really quite hard at times and to dislike the fact that autism, in my son (who is really quite high-functioning) causes really quite horrible things, like suicide attempts and stabbing others and self-harm.

Maybe I should just celebrate all that and keep on smiling smiling smiling, and tell anyone who dares say anything negative about autism that they're wrong, because it's all fine and perfect.

But I can't do that, so I guess I'm not welcome on here anymore. So on an SN thread for parents, we can't dislike anything about our children's SN

OP posts:
meggymoosmum · 06/05/2009 20:29

Sigh.

debs40 · 06/05/2009 20:30

No you mustn't go. No one should take any of this personally. It is all highly emotive and we are talking about children's lives and the lives of parents coping with them.

I would be horrified if you thought you had to leave the board. You were very brave in saying what you feel.

No one should resent that.

Apprentice is on soon - that will make it all better!

tclanger · 06/05/2009 21:07

This reply has been deleted

Message withdrawn at poster's request.

Davros · 06/05/2009 21:11

Naturally I agree with Givemesleep, she makes perfect sense to me.

RaggedRobin · 06/05/2009 21:22

"Honesty, and a safe space to talk, brings perspective and support and that is what we're all after."

Debs40 hit the nail on the head, and i think it bears repeating at this point in the thread.

anonandlikeit · 06/05/2009 21:33

Here here Davros! Plain honest speaking is what we need & somewhere to vent.
Don't go givemesleep.

Its bollocks, now pack it in before i bang your heads together.

lingle · 06/05/2009 21:40

"I know that not being able to share her feelings honestly caused her to live a life of unspoken anger and depression until her death ten years."

nicely put.

cory · 06/05/2009 22:04

I think it is only natural that there is some sort of feeling of divide between those posters (perhaps the majority on the forum?) who see their dc's disabilities as part of who they are and therefore something to be celebrated, and those of us who frankly can't see anything positive about it.

There have been times when I have felt guilty because I don't seem to be celebrating "who dd is" in the same way as I see other posters doing.

Then I tell myself not to be silly; it's not that I'm trying to do something other posters do better; it's that we're looking at different situations; you can't compare. Now my dc's aren't actually autistic, but from what I understand there is so much variation within the autistic spectrum that you could well understand a whole range of different situations, from "I am so happy that my son is like this" to "from anything I can make out, my son's life is shit".

What we need to do is to support each other in the situation each one of us happens to be in, not feeling we ought to react as somebody in a different situation would.

saintlydamemrsturnip · 06/05/2009 22:41

giveme - you have put into words exactly how I feel. Don't go, or if you do email please on the email address I gave earlier

saintlydamemrsturnip · 06/05/2009 22:41

giveme - you have put into words exactly how I feel. Don't go, or if you do email please on the email address I gave earlier

macwoozy · 06/05/2009 23:12

givemesleep, thank you for speaking such sense amongst the shambles that I see developing within the SN board just lately.

bullet123 · 06/05/2009 23:19

I wouldn't want to see you leave either Givemesleep. I am very happy with my life and with how I am for example but I would not want others to think they have to tread lightly around me.

saintlydamemrsturnip · 06/05/2009 23:24

bullet I find your posts fascinating .

I do sometimes wonder whether you're a higher functioning version of ds1 because so much of what you write about sensory processing is familiar in terms of knowing ds1, but then I start wondering why you're high functioning and he isn't and then my brain explodes

bullet123 · 06/05/2009 23:35

I have very good understanding of language (strong hyperlexic traits as well) and the motor planning difficulties I have are mild in comparison. Both of which help to place me on the high functioning side of things.

saintlydamemrsturnip · 06/05/2009 23:49

I think it's the motor planning difficulties I identify with for ds1. He doesn't have good understanding or language but I think you explain the problems with motor planning (and initiation) very well.

Drew s probably very similar to you but with very limited speech. He is similar to my DS1, but with better understanding. He seems a great kid!

saintlydamemrsturnip · 06/05/2009 23:50

(Drew btw is non verbal but with complete and normal understanding). Very severe apraxia and dyspraxia.

amber32002 · 07/05/2009 07:02

But I am a mum with an SN child

Oh dear, I've no idea how to make any of this better for your GiveMeChocolate. Like I said on the other thread, I hope we can all be friends on here because I like everyone on here, and no, I didn't ever use the 'we' word because I thought I was the self-appointed spokesperson for every single person with an ASD on the planet. But I guess NT thinking might have assumed NT motives or thinking on my part, if that makes sense.

No-one is trying to stop you from saying what you feel. I wish I could help you understand this. It was that wretched poem which was total generalisation from 30 years ago that was the problem, but somehow you've 'heard' it as me or mumsnet telling parents that they can't ever say how they feel.

We can, we do, we have, we still will.

Please don't go, especially not just because I have a reaction I can't help having because of the disability. It's like someone leaving because the blind person fell down the staircase, otherwise.

amber32002 · 07/05/2009 07:07

Meant to say - on the other thread I asked if anyone could think of a good compromise - how about if parents are going to rant in ways that yell at people with an ASD, they could just put the word WARNING in the thread title, so I could at least try to avoid it? That would help me or others who are SN mums with an ASD but still give people the space they want?

Would that work?

TinySocks · 07/05/2009 07:14

givemesleep: just wanted to echo what others have said. Please don't leave this forum. This forum needs people like you; you have the balls courage to say what you really think.

For what it's worth, I think you always speak so much sense and I think you have all the right in the world to come here and vent your frustrations and talk about your feelings.

cyberseraphim · 07/05/2009 07:21

I think it would be hard for a warning to work, i think the trick is to remember the postings are not personally directed (unless marked as such) so unless the heading says Amber, you shouldn't take it too personally. I don't think anyone should leave or feel they have to

amber32002 · 07/05/2009 07:23

Can I try one more time to explain something please, but in the knowledge that I may well get it wrong?

Suppose you have an SN antenatal group for mums of children with visual impairment, in which you have ten mums, and one of them is blind, and another one is partially blind. You're in a room which is too hot, so you need to open one of the big windows in the room, which juts out into the room at adult head height. But you don't mention which window it is.

All of the sighted mums can see which window is open, so you know how to avoid it. The person who is partially sighted can just about see the window, so they're ok if they take it slowly enough.

The mum who's blind doesn't realise where the window is. She gets up, and smacks her head on the window and is knocked out for a few second. She's lying there bleeding, wakes up, asks for help but doesn't know quite which sort because she's so dazed by it.

Would the right theoretical reaction be "Well we need air in the room and it's our right to open that window - are you telling me we can't open windows and we should all suffer in the unbearable heat?".

Or would it be better if all the mums could agree that they find a way to warn the other mum about any open window edges, because when their own children grow up, they'll be the ones lying bleeding on the floor?

Er, does that make sense? Or have I just done another fantastic bit of ASD foot-putting?

amber32002 · 07/05/2009 07:24

A warning would work for me, FWIW

amber32002 · 07/05/2009 07:28

Cyber, I do know what you mean. But it's not me choosing or not choosing to take it personally, alas. My brain is wired straight into the panic-centre. Not all ASD brains are, but some are. It's more like an epileptic fit in a way - I can't switch it off once it starts and I am really, really sorry that I can't

sarah293 · 07/05/2009 07:44

This reply has been deleted

Message withdrawn

Shells · 07/05/2009 07:52

I think Amber is asking for something that shouldn't be hard for any of us to accommodate.

I really value her posts and if a warning makes it possible for her to carry on posting, then thats fine with me.