dear mn hq why are so many disablist threads being left up

[Samcro]

one today for instance and mn hq post
"We don't think that this thread is disablist, it is a valid discussion that we don't think should be shut down. "

yet it has obviously been reported.
cause hurt and upset
how is that making life easier(or better) for the sn community`?

or this message from mn hq
That CBeebies is just far too PC
Thread deleted
Message from MNHQ: Thanks so much for all the reports about this.

Although there has been some interesting debate and discussion, we do agree that the OP and some of what ensues is disablist, so we have decided to delete.

how can these be interesting debates??
\not long ago mn hq said that they were going to be quicker dealing with this stuff
what happened??

fanjo thanks for that. I did have to negotiate the stressful, adversarial and unwieldy SEN system. My child was at the receiving end of prejudice and discrimination for their additional needs. This is how I think my experiences relate to this topic.

I'm sorry if you think my experiences of this are not relevant but tbh my situation is made doubly difficult when people think the conversations, I need to have, somehow threaten the validity of their own situation. I believe we can express and accept different experiences and still be supportive of each other.

*SpinnakerInTheEther

Just yes, the scope is wider without diagnosis (where this is appropriate) but the upside is that aspirations can be too*

This is essentially agreeing with the OP f the other threads pejorative talk of carrying labels around.

I don't think it's appropriate

I said it wasn't the time to have it.

But I also disagree with the last post you made.

Polter sigh...yes I do know that. The assumptions made about and resulting treatment of my child were not helpful though and could have been potentially very damaging.

Just yes, the scope is wider without diagnosis (where this is appropriate) but the upside is that aspirations can be too.

But nobody with a disability has to accept other people's aspirations for them. Where that problem exists, it's due to ignorance; It's not a reason not to have the diagnosis.

DS has just confirmed his place at Oxford. We've been grinding through the Autism process (first diagnosis then the fight for suitable provision) since he was 18 months old. Twice the LA tried to put him in schools where they only offered 3 GCSEs. But I fought the proposed educational provision - with evidence - I never once thought he'd be better of without the dx.

Even now, off to uni; yes he's achieved well academically so far, but there are still so many areas of difficulty for him in day to day life - being able to document his need for adjustments is so very important. He wouldn't be able to function in any mainstream environment without the adjustments.

So, I don't see it as the DX limiting aspiration. Poor general understanding of the DX is the problem and hopefully that's slowly being eroded.

Spin have I understood it correctly that your child was never diagnosed with autism, but educational professionals treated them as though they had? If correct then it's not really the same as people questioning whether someone with a diagnosis is actually autistic or just naughty is it?

Your situation sounds tough but it seems as though your DC is now doing well because of the support they received? So i struggle to understand how people assuming they had autism was a bad thing? I hope I'm not offending you here, I'm trying to get my thoughts across well but think I'm failing a bit!

(And the same applies to all sorts of aspirations and any disability.)

"Autism wasn't the problem for your ds, ignorant teaching staff who were too lazy to read a statement were the problem"

Entirely agree with this. Spinnaker - your problem wasn't about people minimising your DC's issues or saying that there was nothing wrong with them and you'd got a dx because they weren't very nice. Which is what this thread is about. In the context of your DC's situation, diagnosis du jour (and I'm not writing de) is an acceptable shorthand to explain your frustation. It's not an acceptable shorthand when it is being used to imply that there is nothing wrong with your child. Which it was used as on that thread.

I like 'disabilities are only diagnosed when doctors are sure beyond doubt of the diagnoses, We do not believe it is acceptable to question the validity of a diagnoses on these forums.'

I'd quite like that statement to apply in real life too please

fanjo talking about scope and aspirations being wider without diagnosis feels appropriate to me, coming from my perspective at least. I understand though why it might be uncomfortable for you, hence I qualified with 'where this is appropriate'. I hoped you might have been able to understand why I felt like this, in light of the context of my posts.

This is one type of assumption that is isolating to me, that is 'dx is always best'. I do feel that if dx is not appropriate it is not appropriate. Spending potentially years actively pursuing a dx, when there is none to be had would have been to the detriment of my child who received enough funding, advice and provision for their needs to be met and who ultimately overcame what were 'delays' rather than life long difficulties.

I like 'disabilities are only diagnosed when doctors are sure beyond doubt of the diagnoses, We do not believe it is acceptable to question the validity of a diagnoses on these forums.'

I like that too.

This is one type of assumption that is isolating to me, that is 'dx is always best'. I do feel that if dx is not appropriate it is not appropriate. Spending potentially years actively pursuing a dx, when there is none to be had would have been to the detriment of my child who received enough funding, advice and provision for their needs to be met and who ultimately overcame what were 'delays' rather than life long difficulties.

Okay but that's not about Autism. By definition.

I think you're quoting me from upthread. And what I was asserting was that pursuing a dx for suspected autism is better than NOT pursuing a diagnosis for suspected autism.

If scope and aspirations are wider then this is wrong.

This is a wrong attitude to autism diagnosis and pretty much saying the same as the OP of the other thread said.

And it's not about whether it's uncomfortable to me. My DD won't ever be independent and she couldn't even tell us her aspirations. It's about pejorative minimising attitudes to diagnosis. By people who have the luxury of their kids doing well and don't need one.

And that therefore the act of seeking DX for Autism shouldn't be discussed in derogatory terms (fashion, fad, sharp-elbowed MC etc).

Your situation sounds tough but it seems as though your DC is now doing well because of the support they received? So i struggle to understand how people assuming they had autism was a bad thing? I hope I'm not offending you here, I'm trying to get my thoughts across well but think I'm failing a bit!

MrsFizzy I would say despite the 'support' (or lack of it) they received. My child's individual funding was not spent solely on them. My child's attainment was managed, in that their abilities and progress were not fully acknowledged, I strongly suspect, in order for the school to cling onto their funding. My child was not given the same assessments as the majority and when, eventually, we could demonstrate progress and the Statement was ceased there appeared to be a rather unnatural jump in attainment.

I really don't see the difference between what you are saying and the OP of the labelling thread, you are just justifying it with experience but the attitude is the same. Sorry.

And this isn't personal to me, as I have said. People like to say I'm projecting and upset because of DD but really she is a totally different ballgame.

I will leave the thread to people who are less annoyed than me, for the moment. A protest thread about disablism is not the place for this discussion though.

Acknowledging that diagnosis is not always best, that is if no diagnosis fits, is not derogatory regarding diagnosis. To diagnose my child with a diagnosis that did not fit would be eroding the meaning and validity of a proper diagnosis.

*BUT that adds to the problem. If people are behind the times the best way to catch them up is to be clear and succinct about what is and isn't correct/acceptable.

No, you're wrong, that's disablist, this is correct, we can't propagate your misconception here, DELETE and people will catch on quick.*

Yes I totally agree with the above. Somethings relating to disability are not up for debate, they just are not.

disabilities are only diagnosed when health care professionals are sure beyond doubt of the diagnoses, We do not believe it is acceptable to question the validity of a diagnoses on these forums

This says it all for me especially if it comes from MNHQ but if they are unwilling to do it I think it is the exact wording I will respond to these posts with every time.

How about the line from Mumsnet being:

Unless a poster asks your professional opinion on the validity of their child's medical diagnosis, it's not your place to comment!

Can you imagine if someone came on and said they had been diagnosed with skin cancer with a particularly nasty looking mole, and someone suggested that actually maybe they just needed a good scrub under the shower and didn't have the mole at all?

Sorry, Jason, it was a bit early, brain not engaged.

Some DCs (my relatives included) are text book definition of autism. However, as someone has said, sometimes people with autism can mask, making a firm diagnosis more difficult. Also some DCs can display atypical autistic behaviour, although they also have some typical behaviours. That's when doctors will say "tendencies" because often there is something else involved.

They certainly have additional needs but doctors are reluctant to say autism firmly. As they get older a diagnosis can be easier.

Many DCs with autism do not have a firm diagnosis of autism and won't unless their parents take them back for further assessment. But they do have additional needs and some parents feel that as long as they are getting the support they need they are happy for now.

Firm diagnosis beynd doubt is rarer than many people think.

I like that, Alice.

Firm diagnosis beynd doubt is rarer than many people think

Nonsense.

Just no one has qualified when a pursuit for a dx should stop, have they?

I did get my child assessed. There was funded provision and copious appropriate advice but no firm diagnosis because one did not fit.

Yet people still suggested we should persist pursuing, 'not give up' meaning not giving up on gaining a diagnosis. Diagnosis was never the goal for us. It might have happened it might not have. We just wanted out child to receive whatever type of education, with or without additional support, they needed.

Spin the week before DS was Dx I remember sitting with DH and just hoping not to find myself in your situation whereby we knew there was something significant at play with him but what happens if it does not meet the criteria. So I totally get what you mean about the lack of black and whiteness of the issues. However a bit like you, criteria met or not met, we knew we had issues that need to be addressed and that our child had needs. For us getting some diagnosis of those needs was absolutely crucial as he would get almost nothing without out it (not uk) and that is completely wrong. The child has issues that need to be addressed with or without the diagnosis.