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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From the linked above thread you will see many autistic people who feel that MNHQ allow many posts which are based on outdated, inaccurate and harmful stereotypes of autistic people.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Their partners and many of us view this as extremely offensive as again, this self diagnosis is based on these outdated stereotypes (please note an individual self-diagnosing themselves is a totally different issue and though an important discussion, not one I intended to raise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 This is a very outdated term which many of us find very offensive as it is based in a neurotypical person’s view of us and not on our actual “lived experience”.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:
Thoosa · 18/01/2022 14:06

Could get expensive mind. That other thread has just cost me £60 and I was only reading while I grabbed lunch. Grin

There’s a thought @MNHQ - marketing segmentation Wink

HerRoyalHappiness · 18/01/2022 14:17

when I commented at the start of the thread I was hopeful that we would see change happen.

So was I but @MNHQ don't seem to want to listen

5zeds · 18/01/2022 14:27

To me ‘SN’ has a distinct undertone of intellectual impairment,
Grin I think the rational was “disabled” had an undertone of physical disability and that SN focused on additional needs rather than splitting the neurological from the physical. In those days MNSN was a much more vibrant busy and safe space. Many of us met in RL and the #ThisIsMyChild campaign was bonding. I think MN provided a real lifeline as information was hard to come by and everyone was welcome. It got fighty sometimes but nobody was ever asked not to post on a thread and there were some amazing regulars, funny clever women (for the most part). It may still be the same but I stopped posting as much many years ago.
I think the board should reflect what is wanted/needed now by the present users, and if that’s a space where only ND can post then it’s a 180 degree change from what was aimed for before, but that doesn’t make it wrong.

Innocenta · 18/01/2022 14:31

I do think it's problematic to assume someone is NT when they disagree with you, though, @BarrowInFurnessRailwayStation - someone can be validly ND and have an opinion that you think is utter rubbish; it doesn't mean they would have less right to contribute to a ND board.

Innocenta · 18/01/2022 14:34

@5zeds I like the idea of disabled and ND, because disabled people end up knocking around in General Health - and not everyone who is disabled is "ill"! Taking a social model perspective, it's a better 'fit' to pair with ND (i.e. both groups are negatively affected by the prejudices and pre-existing structures of an ableist society, and many people belong to / identify with both).

5zeds · 18/01/2022 14:36

Where do epilepsy, adhd, dyslexia, bipolar, OCD, Tourette’s, etc sit? I genuinely don’t understand the terminology. Is a learning disability ND?

BarrowInFurnessRailwayStation · 18/01/2022 14:36

This reply has been deleted

Message deleted by MNHQ. Here's a link to our Talk guidelines.

Innocenta · 18/01/2022 14:38

This reply has been deleted

Message deleted by MNHQ. Refers to deleted post

5zeds · 18/01/2022 14:38
Shock
AutisticLegoLover · 18/01/2022 14:48

I don't see myself as disabled though. Alternatively wired but not disabled. It depends how you look at it but NT people should butt out.

Innocenta · 18/01/2022 14:50

@AutisticLegoLover

I don't see myself as disabled though. Alternatively wired but not disabled. It depends how you look at it but NT people should butt out.
Yeah, sorry, I wasn't trying to say that I think ND people ought to see themselves as disabled! I think your position is very common, just as there are many ND people like me who have both identities. My apologies; didn't mean to come across as prescriptive. Smile
5zeds · 18/01/2022 15:00

I thought you had to be disabled by your ND in order to warrant diagnosis.

DinosaurOfFire · 18/01/2022 15:56

@5zeds You have to be impaired by your neurodiversity to qualify for a diagnosis, but that doesn't mean you are disabled by it. So I can talk to other people and socialise, but it is hard for me to read social cues or concentrate on multiple people talking at once. I can dress myself, and choose clothes, but if I wear certain things then I go into sensory overload and feel uncomfortable and can't think of anything else. I can shop in somewhere with bright lights and loud background noise (Asda for eg) But it will overload me and so I will need to limit my time there or I will become overwhelmed and unable to regulate my emotions well. I would choose a different supermarket when possible. So I am impaired by autism but I wouldn't count myself as disabled.

5zeds · 18/01/2022 16:12

It’s a legal term, so disabled means your condition “has a 'substantial' and 'long-term' negative effect on your ability to do normal daily activities.”

DinosaurOfFire · 18/01/2022 16:33

By that definition, I wouldn't class myself as disabled. I function well in society, but it has a cost afterwards in terms of energy/ emotional reserves, how much alone time I need afterwards etc. I reached 33 before I realised I might be autistic and that was because my daughter was diagnosed and I shared a lot of traits with her. My daughter isn't disabled by her autism either- both of our struggles are on a personal, more internal level rather than external. I am more than capable of functioning on a normal daily basis, I have my struggles otherwise I wouldn't have a diagnosis but for me, autism isn't disabling. It is long term, its been with me my whole life. But "normal daily activities" seems subjective to me. What counts as normal? I can drive, I can look after my kids on my own, I can advocate for myself and my kids, I can cook, clean etc, I hav 2 degrees, I can go shopping, I can go places on my own without assistance etc.

5zeds · 18/01/2022 16:42

I can drive, I can look after my kids on my own, I can advocate for myself and my kids, I can cook, clean etc, I hav 2 degrees, I can go shopping, I can go places on my own without assistance etc. so presumably could many disabled people.

I’m not sure it’s about how well you cope, more how much you have to cope with.

DinosaurOfFire · 18/01/2022 16:49

I'd never thought of it from that perspective tbh. I would have to give it more thought and reflection. I have never considered myself to be disabled, however can see how society has a disabling effect on my daughter at times- and I have noticed that as society gets louder/ brighter/ more intense eg in shops, that I have more difficulties than I used to. I would feel very odd claiming the title of "disabled" though- any accommodations I made tend to be my own accommodations, rather then external ones if that makes sense? The main accommodation I need people to make at the moment is mask related as I cannot tolerate them at all.

DinosaurOfFire · 18/01/2022 16:55

Having read your link, I would say that my impairments from autism come under that banner of disability. Interesting! Thanks for sharing that, its useful to see concrete descriptors.

ENoeuf · 18/01/2022 18:33

I’ve been emailing MN with suggestions which I’ve already posted but will repeat here - I think we should have a SEND topic with sub topics like
Education
ND Members
Parenting
Etc

5zeds · 18/01/2022 19:38

Why SEND? Not all posts relate to education.

ENoeuf · 18/01/2022 19:57

Because it stand for special educational needs and disability. Added by the Childrens and families act to include the ‘d’ if I recall correctly and now used widely.

ENoeuf · 18/01/2022 20:00

It made the most sense to me because SN feels quite outdated but what do you think if you want more adult and child language? I couldn’t think of anything else but I don’t care as long as it’s not MNetters with SN.

5zeds · 18/01/2022 20:04

Yes I know the acronym I just think not everything discussed relates to education. I personally would avoid an acronym in the title, as I think a lot of posters decode them inaccurately. To be honest I always find “SN Children” jars a bit because I hate it when people describe a child as “the SN boy” etc.

5zeds · 18/01/2022 20:06

I argued quite hard for “disabled” when this lot were chosen, but I think far more liked the SN descriptors.