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 think I just have more hope than you at the moment, silverfrog. I think we will find a way to 'unlock' children with profound autism - some scientific or medical way. And I do see that future for her and will fight with my last breath for it for her, and for you.

amber. please don't take this the wrong way, but you do not know my dd. I do.

I have plenty of hope for her.

But they are realistic ones. Like learning to dress herself. or even being able to do something (anything!) without being prompted.

she literally needs a shadow for everyhting at the momnet. She is quite capable, in her own way, but needs "permission" to even pick up her teddy bear. this is not someone who is going to get a job - not how she currently is.

I have already unlocked a lot of dd1 - she is so far removed form the absent, unfocussed, otherworld baby that she was that is is a joy to see her everyday.

But that doesnot mean that she will ever be independent, in any form.

I too will fight for her to my dying breath, and I will need to, if our experiences with people who are supposed to love her uncondtionally (friends and family) are anyhting to go by.

"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 mus"

But I don't think posting a poem for comments (it seemed the OP was just puzzled by it) would come into this category. Someone mentioned the Autism Speaks Video, I'm not a great fan AS but I really could not see the problem with the video as it was just being honest about the wearing day to day realities. The idea of 'celebrating' or 'disasterising' autism is not what we should be doing, just seeing it as part of life. In an ideal world, no one would have low functioning autism but we are not in an ideal world and we never will be. I do think the more severe autism is then the harder it is in general. I am still guilty of being 'competitiony' when looking at other children on the hospital program. If one is further ahead with language/life skills I feel envious but if one is further 'behind' (awful way of putting it I know) I don't feel envious. I know this sounds terrible but I just being honest. My brother is HFA and I can relate to lot of what Davros said but I still would not go back in time to change him to a more severely affected individual ( if there was a way of doing that)

I never find Ds1 embarrassing. If people want to stare at him or make judgments that's their own look out. It's not that I am a cold, heartless person who cares notning about the feelings of others, it's that if I or Ds1 are doing something that harms nobody else then I am not fussed if people think we appear odd. In the same way if people want to judge me because of how I appear then that's up to them. What I do want is to furnish Ds1 with the strategies and tools and abilities he needs to communicate what he wants and needs to other people and to have a chance at living as independently as possible. If he grows up and decides he wants to devote his entire spare time to writing a book about numbers then that's up to him. If he is unable to phone an ambulance, make an appointment or access help in other areas that would be a concern.
I do agree that there is a big difference between someone saying "this is how I feel due to my personal experience at this time" and someone saying "all people on the spectrum are dreadful and terrible." I have read some incredibly vicious verbal attacks, including one recently in which everybody with Aspergers was said to be a bully who wrecked lives. As I do not care one iota for the person posting the views I could not be bothered to respond, I know I have never bullied and that's enough to explain the fallacy of the tripe spouted.

Cyberseraphim, you could be right, but only a court would be the decider on it. A big factor is "what damage was done, and could that damage have reasonably been foreseen". Each situation is judged on its own merits.

Mumsnet did what I think was exactly the right thing in judging that correctly, given their legal obligations. If they are seen to break the law once asked to look at a situation and remove a poem by someone, then they could be landing themselves with an unlimited award for compensation from someone (not me). What we need now is to work out whether we can work together to allow everyone to rant, which we always do, and yet not have my brain smash itself to pieces.

reasonably foreseeable would be interpreted by looking at the facts and relevant decided law ( if any) but it would be reasonably foreseeable by the standards of an 'average person' ( whatever that is) not an ASD person. I don't it's likely asking for comments on a poem would incur any liability esp as it was clear that the OP was puzzled by it rather than saying 'oh this is wonderful'. Anyway definitely too much time being wasted - I still have not done any real work or kitchen tidying !

No, they'd have to look at it from the POV of a person with that disability, if necessary consulting with the charities or experts for that disability. That's definitely the test in law. But you're right about other things needing doing in our lives.

I find the idea of the mumsnet team pouring over legal niceties somewhat unlikely, judging from their naivety in copyright matters.

I personally have great hope that any moment now they'll start helping with some of this

I wonder if the autism team for me should get in contact with them? That might be helpful.

surely must be reasonably foreseeable in the judgement of the person making the posting/and or service provider otherwise how could anyone be liable - unless you pay compensation to yourself

"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."

If I was still thinking this way about ds1 then I wouldn't have accepted anything about him at all.

I think this thread is just s reflection of the problem with RL support groups. Everyone's experience is different- in part because they are dealing with different prognoses (from job to lifelong 24 hour care), they are dealing with different sensory experiences (from visual learner to totally scrambled sensory system), they are dealing with different issues (from suicidal anxiety to such severe LD's that you really can't go anywhere) and so on and so forth. And they've got there in a different way (some been there all the time, others have watched a regression).

As Davros says people feel differently at different times. And the level of acceptance in part depends on what the child is able to access at the time. I found that when ds1 could do nothing- literally nothing- the only people who understood the actual reality of that were those who had been there themselves. And they were the only ones who could give sensible advice - everyone else assumed a basic level of functioning way above ds1's.

In RL I think the only way support groups work well is if they are large so everyone can find someone in the same situation as them. If you sit in a support group where everyone is doing better and being positive when you have nothing to be positive about it is more isolating than sitting at home alone.

MN is large with a whole bunch of diverse experiences. If people read and find they don't identify with something at all it's probably because they have never been in that situation. As long as they don't assume someone is wrong to identify with it then I don't really see the problem. And if they keep reading they probably will find something they do identify with written by someone else.

Cyber, (note I'm not a lawyer, but I've had to work through this in huge detail with the specialists over the years for schools, charities and businesses) the law says that the duty to provide an accessible service means that any service provider has to anticipate in advance any disability requirements. Easy things to do? Get the free info from the charities, come up with a working plan for how to make it happen, and review it all the time according to the needs that arise. You know you have people with an ASD? What are the hazards for them? Have you come up with a plan? No idea what the hazards are? Find someone to ask, a person who knows the answers. etc etc. I've had to do it for business, the charities I've been a Trustee for, for schools and for clubs. It's easy. It really is.

Since the basic info is free and there is often very low cost training available (I've offered free training to Mumnset in the past from my contacts), there is no reason why a service provider can't help.

All they have to do is put up a line or two at the top to remind people to post sensitively OR to put the words WARNING -CONTROVERSIAL POEM! or something similar in the headings to warn people that they're about to read something that's difficult. Then as long as that's done, and they actively look at queries as they come up, their liability is going to be zero.

But if there's no disability accessibilty policy, no training, and they don't take queries seriously, that would mean a court would whack them mightily.

Makes sense to me that any service provider would want to do the cheap, easy thing to make sure they and their users are ok. That's respecting everyone in a really easy way.

I have to bl*dy well pay for it

amber
or just a big sign saying NO CRAP POEMS

I would get that Holland one banned too...

Yes but surely that proves the point that it is the responsibility of the service provider to know what might be damaging and this can only be judged by the standards of what a reasonably informed person might be. I don't know what might offend a scientologist (spelling?) but I don't feel that i have to consult all their texts to find out - so likewise not everyone will know or even believe that such sensitivity for ASD is necessary. My brother would not care in the slightest about the poem so what if the OP was judging by him?

But cyber, scientology isn't a disability The service providers absolutely have to know about the disabilities - all of them. And they have to know that posting generalised negative stuff about a disability (rather than a parent's rant) is always dodgy in terms of the disability laws. I think they did, which is why they took it down.

If someone turns up at my office and says "Crikey, I've got a hearing impairment and your air conditioning unit in the office is causing me huge ear pain - any chance I can use the side room", I'd be expected to know that some people probably do have that sort of ear pain from some noise frequencies, and be prepared to look for that alternative for them. Flexibility, reasonableness, it all helps. If I said "tough luck, sonny!" I'd be facing a £30k fine.

Riven, the autism psychologist gives me an 'update' annually so that we can work out how to balance what I do or don't do, and answers particular questions from me about how best to work so that I don't end up crashed out all the time. The autism advocate helps me to explain my needs if any person thinks I'm just being unreasonable or takes no notice. The team in the office support me in meetings, spotting body language, tone of voice etc. The people at church sit with me so that if something goes wrong, they can get me to a quiet spot where I can calm down. Er, I don't pay for the church support people, but the advocate do a paid-for service that I could use for that if I needed to. I have more bl*dy people looking after me than a Formula One car at the races , so I can do the work I do. But it works, and it means I can then do what I do to help others and earn the money to pay for help for others, so it's worth it. Some days I just want to get under the duvet and stay there, though.

No it's not but religion is analogous to disability regarding discrimination and what is reasonably foreseeable. I don't know it would be possible for anyone to know everything about ASD - and to know that some (perhaps most) are like my brother and are indifferent to others' opinions whilst others are not. If we are confused and we all live with ASD how would anyone else know?

Sorry - jumping back a few posts again - but blimey Silverfrog, we do have the same life!

I thought that about silverfrogs posts too

For me I mean. Same life type stuff.

cyber - I think that comparison you talk about to others in the group is really normal and almost impossible not to do. The hardest position to be is bottom (was there for a long long time) because everyone else then uses your child to feel better about their own! Which is fine providing no-one says anything. Did have one so-called friend who would always let me know exactly where on the hierarchy she viewed ds1 (luckily she did the same to lots of people so we could compare notes!).