So are only threads celebrating autism allowed?

[daisy5678]

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

I don't think a warning is workable tbh, as I think it's expecting too much for a person who may well be at the end of their tether to be so aware of others, it takes away from having a safish space for people to vent. A warning would be more workable if people are posting to say OMG look at this upsetting piece of writing/what this bigot is saying.

But we have been stopped saying what we feel, that is the whole point of this thread.
If there was a system of "warnings" then it wouldn't really work. I for one would not have posted warnings on any of my posts as I don't think any of them have been unreasonable, rude or unacceptable, maybe others disagree but how can anyone know?
Going back to Cory's post, she talks about the "divide" between people who "celebrate" their child's ASD and those who have nothing positive to say about it and I can see why she feels like that. I think it is less straightforward than that as I think those of us who accept but do not celebrate our DC's ASD do not go around moaning, groaning and feeling bitter in RL, that is what MN is for!! It isn't black and white, you don't have the good/celebrating group and the bad/resistant group. In reality we are probably all somewhere inbetween. I'm not sure I totally buy the celebrating anyway, I suspect its a phase and a coping mechanism a lot of the time.

I've asked mumsnet if they have any better ideas too - thread in Site Stuff. Something that respects people's needs whether they are a parent at the end of their tether (strange expression) or a parent with an ASD whose disability means they're a substantial disadvantage unless they're able to feel their way past the most dangerous obstacles for them.

If it's not possible to find something that works a bit better for me (no, no system is ever going to be perfect, I know this), then I know that my autism team are going to ask me to pull out. That won't be my decision because I'm in a strop or trying to achieve something maliciously - that's a decision of the professionals for health reasons.

The thing is, and I'm in a degree of denial about this, my brain is actually starting to get damaged by the relentless pressure I put it under in order to do the work I do whilst still having an ASD. I'm getting worse at recognising people, responding with more difficulty to panic-inducing situations, etc. Looks like the amygdala is in effect 'burning out'.

In other words, I'm not doing this because I'm out to hurt other mumsnetters, though I fear some of them may think I am. I'm trying to stay in one piece and still be somewhere I love amongst friends.

Yes, I should have mentioned the in-betweens. That too is a spectrum. And people move up and down on it.

OK, if we think a warning won't work, what would? Seriously?

I'm sad that people still think I'm asking for no discussion about any of our feelings on any disability. I'm not and never have.

It's the extremes where it's generalised material close to disability hatred that are the problem for me. Not least because they are actually illegal in the UK.

amber i would hate for you to go so please dont

as for the what we can and cant say i think we can all pretty much speak our minds rant about our bad days and have done successfully for a,long time and can continue doing so

but none of us post in the way of that poem we moan we complain we rant we rave but none of us use those horrible choices of words so surely it wont be offensive and amber will see were struggling having hard day

none of us will write in the repsect of the poem regardless how tough our day has been so i think its silly that were all saying we cant do this and that as i have never heard another mn describe her day in the way of that poem

lets stop reading into it and dividing ourselves into groups
some people found poem offensive upsetting and some didnt but i for one would never even on my toughest day describe ds in any one of them words used

yes i wish he didnt have ASD yes i wish life wasnt so tough at times but i still wouldnt describe it in the way the poem was worded

i value every one of the sn forum there help, there insight ,there feelings, there rants and raves and there achievements lets just continue as we were and keep supporting each other

ive had alot of support on the good and bad days and its never created any problems when ive ranted in the past and i cant see that happening now

to be honest i dont see warnings needed as none of us even on a bad day would wish our child wasnt here etc or any other phrase that was rotten

lets just group hug and realise that we all need each others support, all of us we all need to rant we all need to air our feelings but we all do it humanely and honest not in the way that poem was worded at all only certain parts rang true

and please dont shout at me if this sounds rubbish im tired and i dont want hard feelings towards anyone on here as we have all supported each other and should all feel we can continue doing so regardless of any misunderstandings and of course we need to respect one another and understand what hurts one person can hurt another thats life its human nature

so anyway before i write more and make a complete fool of myself i hope you can all get my gist your all appreciated i value all of your advise lets just get back to being who we are and support each other again

Most of that poem that caused all of this is absolutely fine. But as hard as this is for everyone, please can I ask one more time that you try to see what triggered the shutdown for me from that poem which was sent out by an autism support group -

"My name is Autism....I see the embarrassment their child causes because of me and the parents unsuccessful attempt to hide their child and, me. ...I am Autism. I take and give nothing but bewilderment and loathing in return. ...if I am allowed to flourish, I take away all but their physical life. What I leave behind is almost worse than death... I fear nothing except courage, which I thankfully see little of."

Still can't see it and why this is very different for me to read from someone saying for example

"I've had the day from hell and I want to SCREAM because my child with autism is driving me NUTS"?

Then you're right that we have no way to help me.

and for anyone who doesnt want a hug a big strong handshake and a pat on the back can be given lol

i understand amber as i dont see my ds as an embarrassment yes i can be embarrassed by his actions but i dont see him genuinely as an embarrassment

also the phrase above i dont like will not write it

and alot of other ways it was worded i wouldnt use

but i have used i wish he didnt have ASD im struggling want to shut myself away he is driving me mad i want to up and leave ive said all these things which is humane and true to my feelings

as i say ive never heard another mn describe her child in a terrible way just ive had enough and finding it tough there is no reason for us to stop doing this

Bubbla, exactly. What I'm asking for is a very rare thing, not something that happens on here more than once in a very long while. People are somehow imagining maybe that I'm asking for something amazingly difficult, but I'm not

i dont celebrate ASD but my ds has ASD so i accept it i love him regardless

i rant about him on bad days what mum doesnt about there child

but nothing i can do about his dx i have to brush myself off and continue as his my child and i will do anything for him

the poem indicated hiding the child away no way i put him out there strong and proud his my son

lets not read to much into it or keep going into it it will never stop other wise

support on this thread is my life line and that means everyone on it so if your having a bad day rant away if your having a great day brag away

lets not feel we cant do any of these things we all cope in a way that is easier for us but something stays the same we all love our children regardless and do whats best for them

we all need an outlet to cry and rant and we can so please lets just keep doing so

But no-one is saying people should stop crying and ranting, and no-one ever did as far as I know.

It's a 'straw man'. Is that the right term for it? An argument that was never true in the first place?

I haven't posted on this subject, but have read this thread, and the deleted one.

Before all this came about, I was already moderating my thoughts and feelings about dd1 - i too have felt a bit surrounded by the "autism is a wonderful part of my child" viewpoint.

It isn't. my dd1 is wonderful, but her autism isn't. I would change it in an instant, because of the difficulties it causes - not only for her but for the rest of us as well. I have had to deal regularly with the disappointment of my stepchildren (who are adults now) when we couldn't do something/go somewhere, and this has been hard because of the fac tthat they are my stepchildren - the dynamics are already different. They have at times preferred not to come and stay with us because of dd1's difficulties, and that has been very hard for us (but especially dh, naturally) to deal with

Amber, the poem was a hard read, and I do not feel that way (entirely) about dd1. But plenty of people do.

"My name is Autism....I see the embarrassment their child causes because of me and the parents unsuccessful attempt to hide their child and, me. ...I am Autism. I take and give nothing but bewilderment and loathing in return. ...if I am allowed to flourish, I take away all but their physical life. What I leave behind is almost worse than death... I fear nothing except courage, which I thankfully see little of"

dd1 has caused embarrassment, not only to me, but to others around her. We deal with her as we have faced it everyday, but to someone who comes across her in passing, she is embarrassing at times.

I have at times gone some way to "hiding" dd1 - making her as non-visible as possible at an event, for eg, because I don't want people to talk to her, or to me as I am so weary of talking about it all yet again.

Autism has taken alarge part of dd1, and has certainly given her bewilderment (and me/her family at times). The loathign part has come from strangers, not from us, but it is still there.

When dd1 was small, autism did take away all but her physical life - she used to literally sit in a corner scratching at a wall, and do nothing else. I was so glad to move away from that house last year, as even though we had repainted (and replastered) I could still see the marks she had made - I will she them forever. She used to make her hands bleed and not notice. This was until she was over 2. I was certainly angry, fearful, and very definitely bewildered at that point.

The leaving behind something worse than death I can also accept as a viewopoint too. Not ine, but I know several people (and i think most parents with SN children come across this too) who have now chosen not to be my friend anymore because they cannot cope with dd1's autism. This is in no way comparign the two, but I had an ectopic pregnancy, and the same people were all too happy to talk about my loss with me and help me, but they cannot do so now with regards to dd1. Why? Because to them she is an embarrassment, and they do not know what to say. She make sthem feel awkward, in a way that death would not, as death is a part of everyone's life.

These are things that dd1 (and by extension, I) face every day. THey are out there, and they should be talked about.

Hi Amber so sorry you still feel bad.

I'm hoping you and your team will feel that that poem was a one-off?

I understand what you're saying Amber. I think there are lots of different issues getting mixed up here.

No one wants to stop us having an outlet for saying what we feel.

To be honest I think that whenever anyone tries to sum up thetotal experience of living withASD they will always fuck it up monumentally.

The poem was offensive because it tried to speak to everyones experince.
That is not the same NOT THE SAME as a mum or dad coming to a thread and saying "I feel this now..." " iam grieving about this part of my life or my childs life"

The posting of a personal reaction is nearly always greeted with warmth and empathy even bythose who do not share the feeling or experience.

We do not need warning. We need to agree that poems are shit and should not be posted on here. Nor any statement which attempts to define our lives. Because they are bollocks.

The poem was crap. The deleting of it was understandable but so was the reaction to that deletion. The threats to leave because of censorship and exclusion were predicatble.

Too many people are getting upset about something which has nothing to do with this borad . The point of the board is that we soeak to our personal experiences and we support each other through those. The poem is nothing to do with that and betrayed that principal.

So NO MORE FUCKING POEMS.
and we'll be fine.

Silverfrog, don't you wish with all your heart that people didn't feel loathing, that you didn't have to hide her away, that there was a future for her? I am sure you do.

Imagine that she grows up, as I did, and moves beyond being a child who causes embarrassment and loathing, and finds enough treatment, therapy, strategies, help to enable her to go to a service and find her first ever job.

The job centre tries to find somewhere for her to go. They contact ACME Service Company Ltd whose MD is asked if they'd like to hire a person with autism. Being intelligent people, he or she gets their team to find out a bit about autism, and what they find is a load of poems saying that autism makes people behave in embarrassing loathesome ways, an infection that is worse than death.

Do you think they'll hire them? Not in a billion years.

Yes, we'll have made a really big thing in public about saying how awful autism is, but unless we also learn to put in the positives for the public (not for our own circle of friends - for the public), what we're doing is making it harder for all of our children, whether LFA, HFA or otherwise.

What we say in private to our family and friends, what we say on message boards, yes those things are to some extent away from that future employer's eyes.

But that poem is being published openly for everyone to read, and it is SO negative. People who have little understanding of autism will really think it is true of all autism, and true of every stage of that child's life. And most people have little or no understanding of autism.

I am not denying the realities of autism. I am not saying we have no right to rant or cry. But heck, I'm trying to create a future for the children. A future where we don't have to be this bleak, feel this bad. future where they have some hope. I'm sure we all are.

I wonder about my own son and his future. What the hell job is he going to do? Yes he's verbal, but he has no idea what the right thing to say is half the time. Yes he's intelligent, but he can't write or reference anything. Yes he's strong, but he loses focus half way through a task.

There's days I want to just break down and cry.

But no way would I write something and publish something that served to wreck his chances in the future. I'd want to keep that angst somewhere amongst friends, somewhere where I can rant but it won't possibly wreck his chances. He won't get that many.

No more totally negative poems/pieces of public utterances that make autism look totally utterly awful and hopeless for ever? That might be an idea, yes.

applauds Pagwatch. Amber - I genuinely misunderstood what you were asking for with a warning - I thought you were asking for people to put a warning if they were going to post about their own lives and family difficulties in a way that might upset you.

TC, no, that would be a silly thing for me to suggest, because all the threads say that and as people know I've never once had a bad reaction to any of them.

It's the generalised very-close-to-disability-hate-material that's the problem. Maybe it's because I've developed enough understanding to think "This is a public document by someone who says they're an autism speaker - hell, that's what the whole of society thinks I am - digusting and embarrassing because I have a form of autism" and I can't move past it because my brain has already hit the panic button?

I'm not good at explaining everything. I wish I was.

no i know no one was saying we shouldn't rant or rave but clearly people feel they cant be negative in such a way and have miss read why its not the ranting and raving its the words used in that poem that was offensive and as i said even on our bad days no mum on here has ever spoke about there child in such a way

Another general thing that might help here:

Trying to think how to explain UK law on disability hatred and where the boundaries are? It might be useful for everyone here when they or their child tries to use a service, so it's worth knowing.

Mumsnet is a ?Service Provider? in UK law. It is a UK Company, so it has to take notice of disability laws.

The disability laws for Service Providers say they have to make their services ?reasonable accessible? for people with a recognised diagnosed disability. Any disability that is recognised and diagnosed. Even if it?s a free service. If it?s available to the general public, then by law they must.

There?s all sorts of guidance out there on what that might mean. What is 'reasonable?'

Taking an example, suppose you went to a shop, as a person with Cerebral Palsy. When you walk in, there?s posters on the wall saying "Cerebral Palsy wrecks lives and is worse than death. People with Cerebral Palsy are embarrassing and you will feel disgust when you look at them". The shopkeeper can clearly see the notices. They know they?re there. They can see that the person has CP. They do nothing to help them or change things.

How do you reckon the person with CP feels about shopping there? Do you think they are more or less likely than the average shopper to shop there now? If they?re less likely to, then that shop has broken the law by letting their shop become a place that portrays people with CP in totally negative AND humiliating ways.

Take another example. A person who is blind walks into a shop. There are a bunch of customers by the tills, chatting with the shopkeeper. When they enter the shop, the bunch of people break out into a conversation about people who are blind: "I think blind people are an embarrassment, I loathe them". The shopkeeper notes this, and does nothing to stop it. The blind person asks if the shopkeeper can help them, because they feel intimidated. They don't. The next day, same thing happens.

Is the person more or less likely to shop in that shop now? If the answer is that they?re logically less likely to, then the shopkeeper has managed to break the law UNLESS he or she could prove that it was too expensive or too difficult to prevent it.

But supposing the blind person overhears other parents saying ?My child is blind and I am SO worn out by it ? I?m exhausted, I could scream!? Is that the same? No, it isn?t. The parent is expressing their own feelings about their own child, not generalising in a way that will make any blind person feel that they and everyone like them are disgusting. The shopkeeper has no legal duty to prevent parents from expressing their feelings to each other, and the person who is blind has no legal right to complain about overhearing comments made in good faith. It doesn't become a comment about them personally and all other people like them.

The generalisation and complete negativity is the important thing. 'Could someone reasonably feel intimidated and/or frightened or worthless to find themselves in that situation? If yes, work to change it somehow.', basically.

Parents ranting to each other about their child? Absolutely fine.

I can see why people feel very uncomfortable about this poem.

It wasn't just the embarrassment bit of the poem, there was a bit where Autism said something like

"courage would defeat me but I see very little of that"

Not exactly supportive of parents of SN children that, is it?

And the whole cheap scariness of "I'm coming to get you".

I have often stated on this forum that I HATE my dd's very different disability and see no redeeming features about it.

I would still feel upset by the sensational tone of a poem like this if anyone were to write one like this about her disability. Very different from someone coming online to tell how awful they feel.

Amber, of course I wish that for dd1.

But I'm afraid you're back to generalising. Dd1, as she currently is, is not going to grow up and get ajob. She si not capable of it, and it would take a iracle to get ehr to that point. We have already ahd our miracle, as she is no longer a wall-scratchign fiend, so i don't hold out much hope for another (and it hurts too much to thnk about)

My experience of the wider world is that people already have that view of autism - I have lost count of the number of "gosh, I think you are really special for coping with this" (subtext what a shame your life is not what you thought it would be) comments I have had.

It is only by talking about it (and whilst my thoughts on the poem have not been the hate that other people have felt, I did not like it either) tha tthese views will be challenged.

It is wonderful to have hope, but it is also very painful. And we cannot just present the hopeful side to people. If dd1 does get to te point where she can have ajob, I would hope that any company emplying her would think through the harder side too - if they are only going to accept her with a "nice" presentation, then what happens on her bad days? Autism is all or nothing accpetance, ime, and for it to be all, it has to be warts and all. Which is not to say that the whole deal is not great - my dd1 is fabulous, but she is very hard work. That will not change.

god, sorry for typos. both dds are helping