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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:
daisy5678 · 05/05/2009 21:02

Yurtgirl, sorry about your son.

I don't know what I want this thread to achieve except to make me feel that I, and others, can say what they feel about their lives without being told that it's not OK to feel that way.

OP posts:
saintlydamemrsturnip · 05/05/2009 21:03

I agree with givemesleep.

I think it's a shame it's become so controversial to say that some people are more severely affected than others. Or that autism isn't one thing (it really isn't). I know nothing about life with Asperger's - other than to know not to call it 'mild' and to know that it can impact on lives greatly. However, my experience with DS1 gives me no insight into AS or HFA at all. Because the experiences and needs are so different. That's not being competitive - it's just the truth. And saying someone is more disabled is not competitive. Of course if someone has zero receptive or expressive language they are going to be more disabled than someone with language and speech. Language and cognition are interlinked for starters. That doesn't take away from the needs of the person with speech, or mean that their life is any easier, but it's daft to pretend that the level of disability is the same. Just as it would be daft to pretend that someone with CP who can walk with aids is as disabled as someone who can't sit or swallow.

anonandlikeit · 05/05/2009 21:06

Fuck this may not be a clever answer but MY opinion is Autism is shit!
Disability is shit.
Thats not to say the Autistic or the disabled are shit but the effect that they have on peoples lives, on our lives are shit.

Everyone may not feel the same the bottom line is thats my reality & there are people on here who's dc are far more severly effected.
Maybe I don't cope as well, who knows? But I i am realistic.
I love my child but not the conditions he has.

I hope i wouldn't be slated for offering an opinion that may not sit comfortably with someone else.

daisy5678 · 05/05/2009 21:09

Yes, anon. You have to be allowed to say it somewhere, if that's what you feel.

It's hard in RL sometimes.

OP posts:
tattifer · 05/05/2009 21:16

givemesleep I'd like to think that anyone honest enough to look something full in the face, warts and all, should not only be welcome but championed on a site like MN.

I love my daughter and can, almost every day see her before I think about her asbergers. Then she moves or speaks and all the awkwardness between us comes rushing in.

I didn't see the poem or the last thread. I don't think it's a case of reserving judgement. You're the mother of a child with autism - you're feelings and opinions are grounded in experience - surely that's validation enough.

If there was a cure I'd want to see her cured. Her asbergers gets in the way of a loving relationship. She's amazing at communicating feelings in writing, I can't hug her or kiss her in reality. Of course that's not a good thing. But she's my daughter. Of course I love her, and I'm intensely proud of her but I don't ever ask me to celebrate her asbergers!

anonandlikeit · 05/05/2009 21:17

Exactly, all the opinions are equally valid.
I fully e
accept that my ds's CP is nothing like rivens dd for example (sorry riven). But I certainly don't see it as a competion, I just thank my lucky stars that ds2 can walk & talk.
Whilst ds2's CP & his ASD have an impact or mhis & our life I certainly don't blame anyone having a harder time of things expressing a different opinion.

FFS the very reason I use MN is in RL people seem think they know how you should feel.
It shouldn't be like that on here.

daisy5678 · 05/05/2009 21:29

Just had reply from MN, saying that they

"completely understand that it's important to air the reality of autism, negative and positive. We can assure you that, for that very reason, we thought long and hard before deleting it.

However, several posters contacted us to express their dismay and despair at the thread, including the OP who was very distressed at having upset so many people by starting the thread in the first place.

We're sorry that you're unhappy with our decision but we took it in good faith and with the interests of all posters concerned at heart."

Which I totally accept and believe. I can see why the OP wanted it removed because she felt dreadful for upsetting people. But it is that reaction which I guess I'm not comfortable with.

I have asked MN to re-instate the thread with the OP replaced by a description of the poem as something like 'controversial autism poem' or something and let the rest of the debate stand.

OP posts:
saintlydamemrsturnip · 05/05/2009 21:32

True, true anon. I also think that having a child who is more severely disabled doesn't mean your life is always harder. At the moment ours is pretty good, DS1 can access the stuff he likes, he goes to a great SLD school, we are just getting a very good care package put in place by SS, BUT he is still severely disabled. The fact his life is working pretty well at the moment doesn't mean he can step outside the front door without someone holding his hand, or that he has a functional yes or no or that he will ever get married or even go outside alone. Now I am comfortable that ds1 is severely autistic, and also that despite that he can have a good life and I can be positive about his autism but in the early years when every child you know (including those with autism) are shooting ahead and you're left behind desperately wanting your child to make the same improvements the children around you are making it's very very hard and I can understand why people would find those years difficult.

I'm also aware that if ds1 hadn't learned to imitate or respond to 'stop' I would find it much harder to be as positive as I can be about autism at the moment- because his life would be a lot narrower. On such small gains the quality of life can be altered.

Givemesleep - I know someone who sounds very like your son and has a similar response to babies! It made life hard for a while as of course babies are everywhere!!. I often said to my friend that I was sometimes pleased ds1 couldn't talk!

Deeeja · 05/05/2009 21:34

I agree with givemesleep.

daisy5678 · 05/05/2009 21:36

Did it improve with time? (Please tell me yes!) Not just babies - animals too. I think it's to do with his huge need to control everything around him - and of course, babies and animals are unpredictable and won't do what you tell them!

He is starting some CBT soon to try to help with the control/ obsessions/ OCD type behaviour like this, but I don't think the psychiatrist is that hopeful that he'll even stay in the room

OP posts:
saintlydamemrsturnip · 05/05/2009 21:40

I think OCD is one of the hardest things to deal with. It is certainly more destructive to ds1 than lack of speech. DS1 has real issues with walking in rooms at some stages. Or transitions between say the car and outside (and he's too big to lug out of the car now he's 10).

Yes the baby stuff has improved recently so some hope!

Email me if you want and I can tell you a little more

nezumi35 at googlemail dot com

saintlydamemrsturnip · 05/05/2009 21:42

Oh BTW - Donna Williams REALLY REALLY good on OCD type behaviours. It might be worth having an email consultation with her- she's not expensive either.

anonandlikeit · 05/05/2009 21:42

Saintlyturnip, put any asd child into their worst environment & they becaome severly disabled - but with the right support in place life can be good.

MY ds2's life is every bit as valuable or worthwhile than the next child BUT his disablilties make life hard for him. I doubt he will ever live without support either & that scares me.
On whatever level people on here should understand those fears.

RaggedRobin · 05/05/2009 22:30

fwiw, i think there have been interesting points and good debate on both threads. i agree with givemesleep that it was a shame to lose those valid points of view from the other thread along with the poem.

on the other hand, i don't think it would be true to say that only threads celebrating autism are allowed, as most threads tend to be from parents struggling with one aspect or another (and always filled with supportive replies).

Davros · 05/05/2009 22:49

Struggling with aspects or dealing with difficulties are not the same as disliking the ASD (and AS for me if you count my sister) and wishing it were not there and being able to choose to avoid it in the future if possible.

sphil · 05/05/2009 23:30

I'm doing an Earlybird+ course atm - DS2 is the most severely autistic child represented there. He is also the one who causes the least difficulties. Life is far far more challenging for the parents on the course whose children have AS or HFA - they have to fight more for support, school life is more difficult, their children are more frustrated, angry and depressed. And yet they all have something that DS2 probably doesn't have: the chance of independence. That's not a 'competitive' statement - I'm aware that I have it easy most of the time. But if I could take DS2' s autism away I would, for his future.

RaggedRobin · 05/05/2009 23:46

i didn't say they were, davros. but neither are they "celebrating" autism.

amber32002 · 06/05/2009 06:13

"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....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."

Givemesleep, if I had excellent written communication skills, you wouldn't be complaining about them, would you. Think about it.

If you actually look, I've said time after time that experiences vary. When I'm doing advisory work, I ask them to bring in people from a LFA perspective to make sure we have a representative point of view. Time after time I explain that not all people experience things as I do. You're 'hearing' it in a way I don't ever intend to portray.

Maybe it's because I have a comms disability. Maybe what you're saying is that I need to write in legal-speak every single time I say something on here and end it with a disclaimer of some sort? But what I'm doing is advocating a little for the other people I know and all of their experiences - and I know of so very, very many who have explained their experiences to me in whatever ways they can - from as wide a part of the spectrum as we can possibly manage. I may not do a perfect job, but at least I try. No, it won't be every child's experience but I'm not here as the mumsnet expert and there are tons of parents here who are perfectly capable of saying what it's like in the lives of their low functioning child and who can help me correct things I might get wrong.

I'm trying for you, and for your family, and for all the future you's too. I'm trying to get employers to offer employment, schools to offer proper help, services to offer proper support and money. I'm trying to do that for every single person on the autism spectrum in this job. Poems like the one that were published make that so much harder for your children to get a job, to get respect, to get accepted by people. Because it portrays them as a tragedy and nothing more than that.

And at the same time I've got a husband who's just had a brain haemorrhage and is still getting over it and who so nearly died, and I've just lost my two lovely dogs, one of which was my support-dog. And my advocate's child has just died so I don't even have her help any more. I'm so close to the edge, I really am. But here I am having to be told how lucky I am. I didn't feel that lucky when I tried suicide, or when I survived the sexual assault. It didn't feel that lucky to spend most of my life being bullied. It didn't seem that lucky at all. AAre you saying that because I found a solution after decades of effort that gave me some quality of life, I should be discounted as being nothing like people with Real Problems?

People shouldn't have to walk on eggshells around me, and I've never felt they do. But neither can any of us just say anything we like about autism generally on a UK message board, because it really does infringe the UK disability laws if we put things on here that mean that effectively mumsnet is then promoting a hostile or degrading environment for people with a disability. Plenty of sites in the world where you can do so, but not on the UK ones. That's not me making up a law, that is the law.

There are thousands of messages on here saying how tough autism can be, and I've written some of them too. None of them offend me, Givemesleep. None of those go near to breaking laws. I know how tough it is. I have an ASD child, as you might remember in all of this, and I have looked after a parent who was institutionalised on a regular basis because their behaviour was so extreme and so dangerous. I have arthritis that means I'm in constant pain, I have endometriosis that means I'm facing a major operation soon, I have to have support each day from people to do the things I do. It's interesting that you see my life as lucky. Want to swap? I didn't think so.

What worries me is general published propaganda of any sort about all autism being awful. If it's wrong for me to use the word "we", how come it's ok for that poem to generalise? The OP poem did say that autism causes loathing - another word for disgust. It did also call parents mostly cowards. Is that how you want to see yourself and your fellow board members here? I don't think it was respectful to you, your situation or the courage or anyone on this board.

I'm sorry that you read what I write and see me as someone detached from your situation.

I use my business stuff to give us the money and the resources to help people with autism. I'm used to being mocked for it and told that I get things wrong.

Yes I do get things wrong . You know why? Because I'm on the autism spectrum.

I've been awake since 3 wondering if people are actually asking me to leave mumsnet. I won't know unless you say. I will if it'll make you feel better. Out of respect for you.

Davros · 06/05/2009 07:48

Do you know what Amber, I have to confess that I haven't read your post. It is too long and DD (NT) got me up at 4.30am. I've just read the last bit and all I can say is that you really need to stop thinking its about you and who you are. The whole point is that we want to speak up for our children just as you do, and for the children of other people if they have a similar experience or have shared feelings but not for everyone. We just feel that we need to be heard as much as anyone else and not liking Autism and wishing it wasn't in our lives is just being honest and is just as valid as any other pov. That is all, stop making it into a personal issue and justifying yourself with telling us all about the work you do for people with ASD. Lots of us do that and lots of us don't, its not relevant imo.

sarah293 · 06/05/2009 08:06

This reply has been deleted

Message withdrawn

HecatesTwopenceworth · 06/05/2009 08:11

there's a big difference between talking about challenges and saying that people with autism are worthless and ruin the lives of all around them - which was basically what that piece was saying. imo.

amber32002 · 06/05/2009 08:37

Davros, I like everyone on this site - I think you're all lovely, and I hope very much to learn from everyone here. You see what I say as me justifying myself? Afraid not. What I'm doing is trying to explain in case it helps, and as usual fouling it up.

There are thousands of posts on here where people can and do say what they feel about autism, but I totally agree with HecatesTwopenceworth and the others who agree that the OP poem was something quite different. That's what upset me, not people's genuine opinions. I wish you understood this and we could be friends.

saintlydamemrsturnip · 06/05/2009 08:59

it didn't say people with autism ruined lives it said autism ruined lives. If you once had a normal life and could do normal things with your child. Then following the development of autism in that child you can no longer do anything or go anywhere- -and there are families in that situation-- then you are going to think autism ruins lives. You may not think that always, you may stop thinkin that but the piece was about autism the condition not individual people.

saintlydamemrsturnip · 06/05/2009 09:10

If you have had a previously content child turn into a child who can no longer engage in the any of the activities they previously enjoyed - who can no longer engage in anyrhing- not even lining up of cars- of some ither calming rwpwtitive behaviour-and who is very unhappy distressed and confused then you are going to see autism as having ruined your child's life more than anyone else's. That does not mean you see your child as something disgusting it means you are heartbroken at what your child has lost.

Davros · 06/05/2009 09:10

Why are we talking about that sodding poem again? I thought this thread was not about that but, rather, about some MNers being able to express their active dislike of autism and what it does to lives. There are not thousands of posts on MN saying that at all, it has always been shaky ground to tread, especially when the issue of pre-natal testing comes up and the potential consequences of that. However, there is definitely a movement on MN and elsewhere to sanitise autism and be only positive about it. Saintlydamemrsturnip makes a valid point though about the effect of regression and I also think how different it is when you have only an autistic child(ren) and no other experience. I was in that situation for some years with little prospect of more children and then the worry of another with ASD and it was devestating.
I don't like everyone on MN, I never have, its a replication of RL and I don't like everyone in RL either!