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

Why has it been deleted, I thought it was being kept?
Smacks of censorship to me. I posted on that thread, calling the poem "a pile of shite".
My opinion has now been deleted then?

Whatever the decision, it was bound to touch a nerve. But lines like 'What I leave behind, is almost worse than death.' are pretty difficult to get past.

I don't think anything has been banned. A thread was deleted, but you can start another expressing your feelings.

I agree with you Givemesleep. I love my son more than life itself, but if I could take away his autism I would do so in a flash. And I think he, if he could speak properly and understand the question, would agree, as it just may prevent him doing many things in life (eg having a girlfriend, marrying, having a child, having a job, travelling alone, cooking a meal, having a friend, going to school etc etc*). I think it is great to be positive, and it is also great to hear stories from the high functioning or aspergers side of life. But that's not everyone's story. I was a bit amazed at how much negativity there was when the recent study came out saying they were getting close to the causes of autism, via genetics and study of the brain. Surely that is a good thing? Yet people automatically saw it as some sort of abortion argument. Surely any progress in identifying the causes of , and therefore potentially later a cure/treatment for autism has to be a step in the right direction. And by saying I want a cure for it, I don't in any way love my son any less. But I don't have to love the autism too.

*And by the way, I am not giving up on him doing those things, and am working hard every day, to try and get him the best life possible, as we all are.

Just realised, I haven't posted since yesterday evening so there may well be things I don't know about that went on in the other post so I shall reserve judgement.

THANK YOU Givemesleep and Sickofsocalledexperts. It is just bloody censorship, the Sanitisation of ASD continues. That thread, what I managed to see of it, had some very good posts on it which are now not available. I'm sorry some people didn't like it, were upset or offended, I too feel like that sometimes about threads and either try to disagree in a resonable way or stay away. But does that make their response any more valid than anyone else's? It is not right to remove stuff because someone can't cope with it, is unable be flexible about their own views or feelings or accept someone else's just as valid but opposite viewpoint. Probably shouldn't press "post" but wtf?

I agree - and actually said the same when I hit post and the thread had gone.

Have been pondering it since. Can't write more now as I'm on an iPod but will come back to it later.

Thank you for starting this thread.

Isn't it because
a - The OP desperately wanted it removed

and possibly
b - Something about copyright or similar?

I dislike the poem quite intensely myself and wouldn't want to see its sentiments go unchallenged (though obviously poeple who believe it's valid have to have their say too) but those sentiments were robustly challeneged and I too am a bit disappointed that it had to go. If it is for the sake of the OP then I think that's fair enough.

I, for my part, asked that the poem to be moved to somewhere where there was more chance of non-threatening debate on a poem that is 30 yrs old, since it was not a support topic and because it upset me so very much. It also upset a lot of other people with an ASD, and a lot of people who know people with an ASD. And the OP asked for it to be removed. And there were legal issues involved because this is a UK site owned by a UK company running on UK laws. There are plenty of US sites where you can say anything you like without any sort of worries about that, but not on UK ones. They have to stay within the law as it applies to the UK.

I'd like to say for the record, and since the thread has now apparently completely gone (no, I don't know why), that I have been totally supportive of every single parent on here throughout the time I've been here whether they've ranted about their child or not. Why? Because even though I have close to zero theory of mind, I've lived long enough to learn that there's a difference between genuine angst from the stress of it all, and something written and republished which makes all autism look like a total disaster.

The original poem was removed from the internet by its author, and we perhaps should have respected that.

Do you think I or others like me celebrate autism? If there's a party going on, I'm certainly not invited to it, and I wouldn't cope with one anyway. Do you think all the other parents celebrate it when they post hundred upon thousand of messages on here saying about the problems they have? Of course not. But sometimes we try to lighten the mood with tales of things that go right, with tales of love, with tales of humour. Hell, I might well get things wrong - it would be a miracle of Biblical proportions if I didn't, wouldnt it?

I have an ASD, so does my son, so does my dh, and I've detailed time after time how many ways my life is affected and how much hell it was when ds was small. And the 18 yrs I had to be a carer to a manic depressive parent whose behaviour was challenging in the extreme.

But there is a difference between that and something describing people with autism as having something disgusting and embarrassing, something written for a different time and a different culture. Many people agreed.

So yes, autism can make life hell for parents and indeed for the child because of its characteristics combined with a lack of support and services. If I wrote it out a million times, it feels like I'd still have someone saying I was promoting nothing but some cheerful autism culture that says it's all brilliant.

No I'm not. It's why I work tirelessly to try to get these services in place to help families.

I don't think anyone here is saying it's fantastic to have it. But we don't have to be made to feel like absolute disgusting rubbish.

I am still shaking with worry, and I am still sad. Very sad

I did not know the poem was 30 years old or that the OP asked for it to be removed? (Am confused, why did the OP originally post it then??). I don't think anyone is having a go at you Amber, and your advice is always much appreciated.

The OP wanted advice on whether we too thought it was absolutely awful, since she'd had it distributed by an autism group.

The OP posted the poem because the it had been sent to her (by a local ASD support group or somesuch) and she was shaken by it and wanted the opinions of other posters. When she realised that others were taking it even more badly than she had done she regretted having posted it and asked for a mod to remove it. There was some to-ing and fro-ing before this actually happened but she made the initial request quite early in the thread some time yesterday evening.

I'm unable to find a single thread on here where a parent has arrived and not detailed what sort of challenges they've had with their child - the need for services, their tiredness, their frustration, the stupid rules and the mad bureucracy and the inane form-filling, the partners who don't do their fair share or walk out, the stress on the children, the health worries, the relentless obsessions and problems from them, etc.

Thousand upon thousand of them, with all of us helping and supporting.

Why would one thread being deleted for the reasons given mean that now those thousands of messages are no longer allowed? Someone explain it to me, because it's possible this is some NT thinking that I'm just not understanding.

I didn't read it in the way you did Amber. I didn't read it as saying that people with autism are terrible or disgusting. I read it as someone seeing their own child lost to autism (and if someone has just watched a regression and watched their child go from smiley, talking, happy, to in pain, non-verbal unhappy then they are going to see autism as a destroyer of lives). People who have watched that up close think about their own pain, not about the wider autism community, not at first.

And I think that is a valid veiwpoint and one that people can usually move on from with practical hands on help with day to day life. AND if their child becomes happy again. But they need to have time to come to terms with the fact their child is never going to get married/have kids/work/talk/go to the same school as their brothers - and it would be surprising if there wasn't anger on the way to some acceptance of that.

This I think is part of the problem talking about autism as one thing when it's not. People are going to read something like that differently because their own experiences are very different. Something similar happened with the Autism Every Day video. It did reflect autism as I know it, although of course I wouldn't agree with every single thing every mother on there said but became very controversial and words were put into people's mouths. And there has been a lot of abuse directed at the mothers who took part for daring to feel that way. So one mother was accused of saying she wished her child dead because she had autism. She said nothing of the sort - she actually said on the film something like 'I thought about driving off the bridge because I thought it was a better option than sending my child to THAT school'. It was not a comment on her dd or her autism, it was a comment on her awful fight for some sort of suitable education.

Separate out the 'autisms', give them different names and I think it would become much easier for people to find a place that reflects their world and life.

Oh then I have posted without knowing full story. Certainly didn't mean to upset you Amber. I think I was more pissed off by the negativity on the other thread about the new genetic breakthrough - I cannot hand on heart say I would not be first in the queue if they announced tomorrow a (safe) pill my DS could take and not be autistic any more. And that does not make me anti-autism - in fact if anyone in RL or on here has a go at my son, or any autistic person, and I am present, there is quite a big scene and quite a lot of words beginning with F or C, all from me. But to me, that's not the same as wishing my son had a better chance of a normal life, and of having his own family -or even just a friend. And, crucially, of being ok when I am gone. And all those fears in my heart are because of the deficits he has due to his autism.

Meanwhile, I will fight as hard as I can to get people to understand him, and the condition. I , like you, spend quite a lot of time educating/telling people what autism is really all about. And I will also fight to get him to function as "normally" as possible. Because I won't always be here, and my biggest nightmare is him being in an institution when I'm gone, with people who don't care about his little ways.

I can understand that you will feel that as an attack on you Amber - but it's not, it's just a scared mum wanting the best for her beautiful boy.

And tbh, I only skimmed the poem. It wasn't very well written even.

I find that separating out the autisms and giving them separate names is the problem.

The "you have Asperger syndrome and therefore your life is in no way related to Real Autism and you know nothing of its struggles" stuff is something I encounter from one member of the public or another almost every week of my life.

The "Asperger syndrome is so mild - what the hell have you got to complain about" stuff, too.

Well, there'd be the self-harm, the sexual assaults, the defrauding, the years of bullying and violence, the stupid relationship situations, the years with no real friends, the struggle to talk some days...and I've not even got started yet... an endless list of things that have been hell, and are a lot worse for a lot of other people with supposedly 'mild' ASDs. People say we have all these amazing advantages, apparently. Yes, we can get a job - and nearly every one of us be underpaid, confused, stressed and bullied and made redundant at the earliest opportunity. Yes, we can find a partner, and be assaulted or abused or so stressed out that we can't handle it. It's not a laugh. It's really SO not a laugh or a party. Not for us, not for people with classic autism either. But if we dare find some joy in life and can actually describe it to people after many years, it's taken as proof that we're benefiting from autism culture etc etc and are therefore coping totally well. I'm not saying anyone here does it, I'm trying to explain the picture out there in society.

And from the other side, there are some with Asperger syndrome who (perhaps unsurprisingly) are unable to relate to those with low functioning autism or to parents' needs, and who have a very self-centred view. Unfortunately rather than people think "ah, that's because it's a comms disability with no theory of mind", they so often get hated for that aspect of their disability. Instead of helping us to understand, we might get a verbal punch.

The different names are too often used as weapons by parents absolutely desperate to secure services, and to draw battle lines against the 'other side', as they see it.

It's one of the biggest problems we have, trying to get everyone to pool resources and work together. I'm in favour of the proposed international "it's all autism" diagnostic criteria, simply divided into its function levels.

I'm also tired beyond all words now.

I'm not saying that amber. I'm saying they are very very different and come with different problems and require different support. And pretending that all autism is the same thing does not help anyone.

It's not about anyone being more needy than anyone else, it's about recognition that the underlying disability is different, that the causes are different, and that the support and services needed are different. I think it would be easier for everyone to access services they need (and I include HFA) with that recognition. I don't think there are just two autisms either, there are many.

I also think it would be easier for people to talk about their experiences with less confusion with more recognition that although these many conditions may share a name they are not the same thing.

I didn't like the poem. i found the wording a bit harsh.
However as I posted the other day on a thread about a cure for autsim. I would take a cure for ds2's autsim in a flash, as I would his CP, or his asthma. I don't celebrate Autism. I celebrate my son, I love him as he is BUT would remove the autism if I could.

I think we all feel differently about our dc, about ASD & about sensorship.
I think anything that gets discussion out there is a good thing as long as all those discussing are mindful that everyone is sharing their own opinion & are all respectful of that. I think TBH on the sn board we can have healthy discussion so I don't see the need for deleting threads.

I understand that the OP wanted it deleted and perhaps the original post could have been deleted on that basis. But the rest of the debate should have definitely remained.

The original text didn't call autism disgusting. It did say that autism causes the families of those with autism embarrassment. Do you know what? It does. When my son spits at my best friend's baby, and runs away shrieking and tearing at himself because "the baby's dirty; I'll die if it touches me", or when he takes all his clothes off in the supermarket, or lies down in the middle of the road, I am embarrassed. Doesn't mean I love him any less; it actually makes me love him more and feel more protective of him, but it is embarrassing.

Amber, you said:"you have Asperger syndrome and therefore your life is in no way related to Real Autism and you know nothing of its struggles"

I wouldn't use the word 'real', but I certainly would say that what you have and what my sister has too, and my dad and my uncle (so I'm not anti-Aspergers, I promise) bears very little relation to classic/ low-functioning autism, especially in terms of being able to access mainstream society and realities.

I'm not devaluing what you feel, but you can't compare your life as a successful businesswoman, married with a child, with excellent written communication skills and a keen brain to someone at the other end of the spectrum. Not at all. It might as well be a totally different condition in terms of its impact on your life and those around you. That's not an insult: it means you're lucky in many ways. But it does mean that we're talking about apples and pears: similar, but different.

Amber, I appreciate that this is hard for you. You're seeing this whole topic as an attack on you, but it isn't. Even you, though, describe aspects of your life as hell, and lots of parents on here are seeing their precious children going through hell...because of autism. And I can absolutely say that I hate aspects of autism for what it's done to my son and to me. That doesn't mean I hate him, or you, or even everything about autism. I love the quirkiness it gives my son. But I hate hate hate so many of the other things.

I think the problem is that you do class everyone with autism as one voice/ group. You always use 'we', when you are actually talking about you when describing your experiences. I think (probably understandably) that you see yourself as the same as others on the spectrum and assume that you feel what they feel. So I can totally understand why you see this as being about you, because you see yourself as representing all of autism, and I can see completely why it upsets you on that basis.
But you're not every person with autism. Everyone is different, and affected by it differently, and every family is affected differently.

But that post, and this board, are not primarily about people with SN and their experiences, as useful as I know your posts are to many. I don't say this to be mean or to upset you, this is a board for parents of children with SN to post about children with SN. And that isn't always going to be pretty and nice, because it's not.

You describe yourself some very horrible aspects of autism, and yet you're at the easier end of the spectrum, so you must understand that it is different for others and their families.

I'm sorry that you're stressed and upset by it. But this board might be the one place for some people to go to to share their reality, and they must be allowed that right.

I have to say, it's me and people like me who have been made to feel unwelcome over this as the thread was deleted on the basis that 'good opinion on autism = good' and 'acknowledgement that autism isn't actually always good= bad' (and I think the word disablist was also used about it).

I really really resent the idea that acknowledging negatives makes me an anti-autism, disablist bitch who's out to upset and discriminate against those with an ASD. In my professional and private lives, that is so not who I am.

I'm really angry and upset, but I think the difference is that I am not saying that others can't challenge and oppose my views because I'm upset and angry. I take responsibility for reading this rather than leaving (which was my first temptation). But without debate, there is no broadening of knowledge. The fact is, we all learn from each other, and a sanitised MN where we all say 'oh, isn't autism lovely' is bullshit and no help to anybody, let alone those struggling.

Amber, i'm so sorry you are feeling so sad. I know i don't know you, but i have followed the "other threads" and have been thinking about you all day.

I personally think it was quite insensitive of you to post this thread, givemesleep, and i also dislike the tone of it considering people have been so (quite obviously) upset by the original thread.

I also getting about the way HFA/Aspergers are sometimes talked about on the SN board.

Its not a bloody contest about whose life is worse. No. Symptoms and situations are often completely different from one person on here to another, but that doesn't lessen the effects of one over the other.

Amber - I didnt read the thread and have never heard of the poem but....

I want you to know that I find your posts very helpful.
I am sad, upset and angry about the difficult experiences you have had, but I find reading about autism from an adults perspective very helpful indeed.
You are very willing to write about it and that is to be commended - You also write well, perhaps you should write a book of your own

It is very interesting what you wrote about the problem of separating out autism into different types etc - My ds has a dx of aspergers/high functioning ASD. His school seem to think they dont need to make any adjustments or concessions for him at all. Maybe they would if it was a dx of autism (plus they ideally need a looooooong course about autism...........)

This is a board for me, and others, to post about having a child with SN. So I resent being told what I can and can't post, and what others can and can't post, by you or by MN deleting threads.

I'm upset by it, meggymoosmumm, but presumably that doesn't count?

It's not a contest, no, but the point is that autism is not one thing: it's many, and its faces are different. Something that is missed if someone who knows only one of those faces takes that to be what autism is for everyone else.

Well put Givemesleep.
No, it is not a bloody contest but yet again, those of us who have feelings and views that are seen as "too negative" are having to bend over backwards to accommodate people who we see as "more vulnerable". I believe that those on MN with AS would mostly hate to be pitied but it almost amounts to that if we can't say openly and honestly what we feel, experience and think without having to try our damndest not to upset someone on the spectrum (you may not think we are doing this, but we are). We have enough of that "managing" in RL and I for one do NOT want to see the utter dislike I feel for ASD to be deemed invalid, unacceptable or marginalised. I don't want to upset anyone but I'm not prepared to keep my trap shut in case I challenge someone who finds it hard to deal with.
If we have to list our RL credientials when it comes to support for people on the Spectrum, apart from our own family situations, then I think I could give as good, if not better, account of myself in that respect. But it is not a contest about that either.

Chocolate you said "I'm not devaluing what you feel, but you can't compare your life as a successful businesswoman, married with a child, with excellent written communication skills and a keen brain to someone at the other end of the spectrum. Not at all. It might as well be a totally different condition in terms of its impact on your life and those around you. That's not an insult: it means you're lucky in many ways. But it does mean that we're talking about apples and pears: similar, but different"

I understand what you are saying but as my family are experiencing life atm it is quite hard to take.

My son who is hfa aspergers is effectively being ignored at school because he good communication skills and is bright. He is very very unhappy atm and would burn his school down if he knew how to

Meanwhile a friends son, Tom who has autism and only 20 words he can say is very happily to attend a special school for similar children each day.

Obviously Tom (not his real name) experiences his life in a very different way to the way my son does - but his needs are met

I know what you are saying but as you said in your origonal post "one persons autism is not anothers" - So I guess Im not sure what this thread will acheive?

saintlydamemrsturnip I loved that video when you first posted it. The bits that really spoke to me were when one mum says about her son that what's been taken from him is indescribable, and then the mother describing her wish that she'd be able to dance with her son at his wedding, but knowing it'd never happen.

What I like about that video is that it shows the shit side and the reality but it's also so full of love and hope. I think those women are all really strong and inspirational and really helped me when I first watched it. It made me realise that it was OK to not like things about autism but that also it's not a death sentence.

It's the balance on the debate that I want, and the video does that for me.