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See all MNHQ comments on this thread

Autism and MNHQ moderation

326 replies

HypocrisyHere · 04/01/2022 10:24

I am starting this thread as suggested by @HebeMumsnet following the other thread I started last week

www.mumsnet.com/Talk/am_i_being_unreasonable/4439585-MN-and-their-approach-to-autism?pg=1

The point was the lack of consistency in moderation (the screenshots contained two threads in my watchlist - one deleted due to its title, the other - the “support” thread - allowed to stand despite what many to believe to be a far, far more offensive title).

From the linked above thread you will see many autistic people who feel that MNHQ allow many posts which are based on outdated, inaccurate and harmful stereotypes of autistic people. Further, on the support thread, the majority of posters have self-diagnosed Their partners and many of us view this as extremely offensive as again, this self diagnosis is based on these outdated stereotypes (please note an individual self-diagnosing themselves is a totally different issue and though an important discussion, not one I intended to raise on my original thread). I have summarised my thoughts on that thread in my post I made on 31/12/21 at 12:09.

I also made it clear from my opening post that I think parents of autistic children also need a space to seek support (hence me questioning why first thread was deleted). I know that many parents need this. But you will also see that many of these parents often accuse autistic adults without learning difficulties of trying to advocate for their children. I can state that in my case this is absolutely untrue and I did not see any others in the thread doing so. But I want to be clear that I absolutely support the need for this but it is not fair for these parents to refer to our autism as “mild” which they frequently do. This is a very outdated term which many of us find very offensive as it is based in a neurotypical person’s view of us and not on our actual “lived experience”. Spending the majority of your school years as an outcast and a person who can be mocked is not a mild experience for a child.

On the linked thread you will also see that we have been subjected to a whole load of ableist comments - that there’s something wrong with is, that we need to realise how negatively we impact people, that we are selfish for wanting to centre the discussion on us etc. this highlights the deep misunderstanding, ignorance and downright prejudice many people have towards us.

I think many of us would welcome a productive dialogue with MNHQ where we could address these issues as well as discussing the harm threads about autistic people cause (which includes the support thread). Many of us have acknowledged that we understand our behaviours may seem “difficult” but for us many, many neurotypical behaviours, which we need to accommodate every day, are difficult for us. This is a two-way street and we won’t make progress until BOTH “sides” respect each other.

One final clarification. I am in no way attempting to speak for all autistic people here. I started the thread sharing my own opinion and many people supported me (when I last looked 65% supported me). What I have written here are my own feelings on the subject.

Thank you for asking me to post here and I very much hope we can make progress on this issue and that MN (and society in general) can become a place where autism is understood and accepted.

OP posts:
5zeds · 18/01/2022 20:12

Weirdly i think it’s the “chat” section that has made the board less used/useful and I thought that was a brilliant plan at the time.
I’d probably go with

DISABILITY
Disabled Children
Disabled teens/young adults
Disabled Mumsnetter

ENoeuf · 18/01/2022 20:29

That does exclude the section of the Venn diagram with SEN who aren’t disabled. Where would they / their parents post?

5zeds · 18/01/2022 20:46

Yes I see that. I don’t know. It’s like I was saying upthread. I don’t know if ND includes ALL neurological difference or just people with ASD.

ENoeuf · 18/01/2022 20:46

Oh I think ND is wider than ASD

5zeds · 18/01/2022 20:49

Does it for example include epilepsy, Tourette’s, or brain injury?

Ovenaffray · 18/01/2022 20:52

I think I’m ND. BUT I’m not diagnosed.

I don’t have any special educational needs.

So this new section isn’t for me.

5zeds · 18/01/2022 20:54

Additional Needs?

ENoeuf · 18/01/2022 21:07

@5zeds hi, so my understanding is adhd, asd, Tourette’s and all the dys- conditions (dyslexia, dysgraphia etc)

5zeds · 18/01/2022 21:39

I think epilepsy is the most common neurological condition. What about Tic disorders (maybe they’d sit with Tourette’s?)? I’m asking genuinely. It’s difficult to see where each person would fit and of course some of us have feet in many spaces.

Innocenta · 18/01/2022 21:42

@Ovenaffray

I think I’m ND. BUT I’m not diagnosed.

I don’t have any special educational needs.

So this new section isn’t for me.

I personally do think that this is a tricky one. I can understand why some people with diagnoses want to restrict participation, but it's also true that access to diagnosis is not equal - and very much affected by other elements of privilege and disprivilege. In taking a hardline 'diagnosed only' approach, there's a risk of excluding people who are just as ND as anyone who has the 'right' to participate, but for reasons of postcode lottery, income, other disability, [insert other reasons here], really cannot access assessment.

No idea how to resolve this one. Myself, I am diagnosed with some ND 'stuff', but currently in the early stages of assessment for another diagnosis. The outcome is looking very likely to be an additional diagnosis, though. It's a lot to get to grips with, and I wish there was somewhere to discuss this stuff.

ENoeuf · 18/01/2022 21:46

I don’t think epilepsy is - all the stuff I’ve read is about thinking and performing differently leading to ‘Neurodiverse’ being used whereas epilepsy is neurological - but I’m not an expert. It is difficult but I think if we can all suggest something we don’t find offensive and then build the community feel it would be good. Maybe the name of the sub is less important? As long as it’s clear?

5zeds · 18/01/2022 22:56

Wouldn’t it be easier to just use ASD if that’s the population you want to identify?

ENoeuf · 18/01/2022 23:12

Well I’m quite happy chatting to people who are ND rather than only people with autism. I don’t really care tbh, if it gets changed and works for me I’ll use it, if not I won’t bother. I’m just adding suggestions so we get some on the table.

5zeds · 19/01/2022 01:19

Me too but I think ND means different things to different people especially if neurological damage and disorders beyond ASD or adhd or dyslexia aren’t included. My understanding was also that only formally diagnosed should be there which I think is fairly unworkable given how hard it is to be assessed in the uk

I find the whole thing upsetting really. It’s all just so uncomfortable and cliquey and frankly we don’t fit in RL anywhere either.

Ovenaffray · 19/01/2022 04:39

I don’t have the mental capacity to pursue a diagnosis. As I’ve said before, I’ve been through the process with one of my kids so I’m pretty sure I am.

I’m also physically disabled and have MH issues and I just don’t have capacity to put myself through a diagnosis process at the moment.

But that means that for some people I’m not welcome on any support threads as I’m not diagnosed.

Ovenaffray · 19/01/2022 04:44

And I’m awake at stupid o’clock precisely because my favourite Pyjamas are in the wash, I had to wear a pair I don’t really like and they’ve annoyed me - they don’t feel right and I can’t sleep.

Innocenta · 19/01/2022 06:05

I find it upsetting and cliquey too, @5zeds

And, @Ovenaffray - that's exactly the kind of thing I'm talking about. You've got enough on your plate and it's not possible for you to pursue formal diagnosis, not in a society like ours that makes it so difficult. It's not like you've seen one video on Tiktok and decided you have the condition of the month (I completely understand why there's wariness around this type of self diagnosis). But there is a lack of access to neurodiversity-type diagnoses in the UK.

ENoeuf · 19/01/2022 06:24

I’m a bit confused by the last comments - I’ve never suggested only dxed people should post? That’s not the type of topic I’m in favour of?

Ovenaffray · 19/01/2022 06:30

I find it really upsetting and cliquey too. I’m not even sure I’m welcome onTHIS thread Never mind a support one. (I deliberately haven’t posted on the support thread linked on this thread because I haven’t had clarity around whether I’m welcome or not).

Innocenta · 19/01/2022 06:34

@ENoeuf I was commenting on the general atmosphere of this and a previous thread - I'm sorry that it came across as a comment on you. Not intentional at all! I've really appreciated your posts Thanks

ENoeuf · 19/01/2022 06:39

Oh thank you for clarifying @Innocenta maybe just timing. I managed to get dx privately but it took a while to save for and the nhs service was almost non existent locally and would have been a very long (years) wait. I think identifying with the challenges we face is enough really to join a discussion.

Innocenta · 19/01/2022 06:46

I genuinely think it was just timing, @ENoeuf - really don't think anyone was aiming their comments at you.

Private assessments are so expensive, aren't they? winces (Yet another thing people in general don't even need to think about...)

ENoeuf · 19/01/2022 07:01

Yes, really expensive and often not local. I was glad for peace of mind, and my mum came to confirm some childhood stuff. But affordable a lot later on than I first started suspecting because I had to wait and save.

BertieBotts · 19/01/2022 07:13

Hang on, I don't think anyone has said anything against self diagnosis. I've never seen this here on MN. Most of the support threads have been really clear that wondering or undiagnosed is absolutely fine.

People do not like armchair diagnoses of other people e.g. a spouse, particularly when that armchair diagnosis is based on something flimsy and stereotypical like "he forgets birthdays and doesn't telepathically notice when I'm upset" or harmful like "he gets angry when I'm ill or if I cry" or when it's used to make the other person feel superior because they don't have ASD but their partner "does" so he "can't help it".

Self diagnosis is quite a different beast and I think most of us well understand the crushing weight that lifts when you realise wait, there are other people like me?! That's not happening when someone is saying they think their partner has ASD because they say insensitive things.

Ovenaffray · 19/01/2022 07:36

@BertieBotts I’m one of “the neurotypicals” because I’m not formally diagnosed.

I can’t say I’m neurodiverse because I’m not diagnosed.

Calling people “the” anything is othering and exclusionary.