Meet the Other Phone. Child-safe in minutes.

Meet the Other Phone.
Child-safe in minutes.

Buy now

Please or to access all these features

Site stuff

Join our Innovation Panel to try new features early and help make Mumsnet better.

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From the linked above thread you will see many autistic people who feel that MNHQ allow many posts which are based on outdated, inaccurate and harmful stereotypes of autistic people.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Their partners and many of us view this as extremely offensive as again, this self diagnosis is based on these outdated stereotypes (please note an individual self-diagnosing themselves is a totally different issue and though an important discussion, not one I intended to raise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 This is a very outdated term which many of us find very offensive as it is based in a neurotypical person’s view of us and not on our actual “lived experience”.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:
Innocenta · 19/01/2022 08:07

Unfortunately I have definitely seen people criticise self diagnosis of ND-type things, @BertieBotts - I think there are many of us who really do agree that in practical terms, it isn't possible for everyone to be assessed and formally diagnosed. But there are some posters who take a more exclusive stance.

Ovenaffray · 19/01/2022 08:17

Thank you @Innocenta. I definitely feel the same. And I don’t want to cause offence by posting somewhere that is support for neurodiverse people.

I mean. I’m diagnosing myself in the same way that those on the problematic thread on relationships diagnose their partners.

BertieBotts · 19/01/2022 08:40

I don't think it's the same at all.

Self diagnosis is useful. It gives you a starting point to explore new ways to look at/manage your life. It can be incredibly positive or neutral in the experience of myself and other people I've spoken to.

Whereas amateur diagnosis of somebody else tends to be used as more of a stick to beat them with or an umbrella to place all the things you dislike about them under. You often see people saying things like "I think my DH might have ADHD, would it go away if he got medicated?" I find those threads quite difficult and tend to stay away from them. It's like the neurodiversity is some kind of illness to be accepted or got rid of. There is no sense of curiosity and excitement at a new understanding. Just oh, here is the source of all my problems, maybe I can make them go away.

I accept that the "diagnosis exclusive only" likely does happen, sorry. I am just saying I have not personally come across it.

Ovenaffray · 19/01/2022 08:44

I’ve seen it. Even here, on this thread, I feel like it’s here. I feel like because I’m not officially diagnosed I’m not welcome. Yet another thing I failed at. And got wrong.

I haven’t posted on the “support” thread either. For the same reason.

BertieBotts · 19/01/2022 09:00

Flowers Well you'll always be valid to me.

Ovenaffray · 19/01/2022 09:04

Thank you @BertieBotts

Innocenta · 19/01/2022 09:43

Same here, @Ovenaffray Thanks

DinosaurOfFire · 19/01/2022 09:49

@Ovenaffray I echo what BertieBotts says- self-diagnosis/ identifying as neurodiverse can be a helpful thing, and is valid. Especially in cases where adult diagnosis is out of reach.

If you are interested, the website psychology-tools.com/ has lists of diagnosis tests on it that are used by professionals- it could be worth looking at the ones that you feel "fit" (I not sure which neurodiverse qualities you feel you have, so am sorry I can't be more specific). This isn't to say that you can't be neurodiverse if you don't do them, just I found them helpful myself in my journey of finding out I am autistic (and probably have adhd as well. Am not diagnosed with that one but come out incredibly high on ADHD scales!).

Incidentally this is another reason I think we need a board- it could be useful to have threads where people who spot traits in themselves can chat/ find resources/ advice etc. At the moment all these threads are scattered around. Off the top of my head, there are current ND focused threads in housekeeping, in chat, here, in the SN section. It would be good to have them all in one place, and for that one place to pop up in Active Conversations

ofwarren · 19/01/2022 09:54

Come on over @ovenaffray, there are a few people on there who aren't diagnosed and are questioning.

Ovenaffray · 19/01/2022 10:09

I have gone back and re read the thread. I have seen comments that are definitely excluding those who are not officially diagnosed. I’m not going to repeat them but there is actually one comment that straight out says that anyone without a formal diagnosis shouldn’t be commenting.

There is also a tone of certain posters being royalty and having to toe the party line and not disagree.

I’m now spiking anxiety that I’ve yet again got something wrong by posting on this thread and I’m doing what I suppose is stimming. But then. How can I be. I’m not diagnosed. I also can’t step away I am refreshing and reading and getting more and more anxious because I shouldn’t be here and I’m not wanted.

And if that doesn’t meet the FUCKING criteria to post here can you please tell me why? Am I lying? Is that it? Because I don’t have a diagnosis I am not believed? Why?

DinosaurOfFire · 19/01/2022 10:38

I was diagnosed in my mid 30s. I was autistic my whole life but didn't know. Not being diagnosed didn't mean I wasn't autistic, it just meant I hadn't been assessed. My mum was most likely autistic too, she was never diagnosed, but she and I are so similar, and she started to recognise traits in herself after my daughter was diagnosed but she passed away before I could tell her about my own diagnosis. My dad was probably autistic too. My DH isn't diagnosed, but he self identifies as autistic- we presumed he was the only one of the two of us until I started seeing my own childhood/ adolescence laid out in text when researching autism to help my daughter. There are lots of undiagnosed people around- it wasn't understood or diagnosed as much when we were children, and so there are loads of people, women especially, who flew under the radar and mask or camoflage well enough to continue to fly under the radar as an adult. This is why my personal view is that undiagnosed, self-identifying people should be welcomed. From what you have said, Ovenaffray, it seems you have thought about this in depth, you have recognised traits in yourself that are consistent with neurodiversity and therefore you are welcome here. Your experience of going through the diagnosis procedure for your child and then recognising it in yourself is so so common.

ofwarren · 19/01/2022 10:44

@ovenaffray I'm sorry, I've not seen those posts. I generally skim the thread so must have missed them. I totally understand why you feel the way you do.
Maybe if we get our own area there could be an area for people who are questioning?

Innocenta · 19/01/2022 10:46

I'm really sorry you're feeling so upset, @Ovenaffray Thanks

I've just looked back through this thread, and the content here is quite varied - some is constructive, but some is upsetting. It makes me sad that people have caused you to feel so excluded. And I definitely know what you mean about pressure to toe the party line!

I'd love to have a section of the site focused on neurodiversity and disability where everyone who identifies as one or both of those can feel welcome.

ENoeuf · 19/01/2022 10:48

I would have loved a people who are questioning area - would have been amazing to connect with others. Also as I think I keep saying I don’t care who I talk to ND wise - dx/no dx just no thank you to NT identifying people telling us why we are a problem. Also where people may understand requests. I had a spat elsewhere (probably didn’t cover myself in glory) and had to ask 3 times for the person to stop @ing me - they continued so I had to ask MNHQ how to switch the function off. On a dedicated thread I think people would get it.

Innocenta · 19/01/2022 10:53

@ENoeuf thank you for consistently being so warm and constructive in your responses. Just want you to know it doesn't go unnoticed, especially in a somewhat tense thread! Cake

ENoeuf · 19/01/2022 11:03

Ah thank you Innocenta I think we all can be a bit easily bruised as a result of real life experience and the reaction is to feel wrong or excluded because you are so used to it. It’s a real issue and one I know my ND partner just can’t relate to. Even in therapy the therapist was like ‘well they weren’t nice people’ and I was like really? Everyone? Every experience was because these people weren’t nice? I needed more , an understanding of how to manage interactions and not just keep on trying and failing. I don’t think we should start deciding who qualifies or doesn’t qualify to join in the Asd/adhd/dys- club when we’ve often been on the receiving end of that our whole lives!

^^essay, sorry 😳

AutisticLegoLover · 19/01/2022 14:24

Maybe we could start a people who are questioning thread along with a thread for those going through the diagnostic process. I'm on the waiting list. I've done the you must return this to us in 2 weeks and we'll see you in 2 years bit and now I'm just waiting and popping my top button as someone on another thread said. I love reading posts from others and find them a comfort especially as many of us don't fit the stereotypes that society have given us.

ENoeuf · 19/01/2022 16:24

We will always have differing opinions won’t we, as a community. It’s just about understanding and accepting that things aren’t always right or wrong. I know I can get quite frustrated when people don’t seem to share my view and I really work on it .
Eg I dislike welcome to Holland ,Aspie, we’re all on the spectrum, any suggestion asd is a super power or just a different way of thinking and not a disability but I know it’s not the only view and that people get comfort or positivity out of them (even if I can’t understand why😂) so it’s best to recognise and accept that.

AutisticLegoLover · 19/01/2022 17:07

What's welcome to Holland?

ENoeuf · 19/01/2022 17:14

It’s a poem - often given to parents if their child is disabled or has SEN. Definitely much loved and has meaning to a lot of people so not denigrating it, just an example of something where we won’t always agree within a community.

BertieBotts · 19/01/2022 17:17

It's a very dated bit of writing that is aimed at parents who "had planned to go to Italy" (ie have a neurotypical child) but they "find themselves in Holland instead" (ie have a child with autism) and that Holland is very different and it's OK to feel disappointed about your Italy plans but there are nice things about Holland too.

5zeds · 19/01/2022 23:41

I’m not a Holland poem fan either. I don’t like the whole “mourning the child I thought I was getting” vibe at all. I think some find it helpful.
I’d really rather boards weren’t dx specific but angry NT mum bashing doesn’t help me support my dc and is fairly demoralising. I think if people really feel that they need to vent that then somewhere easy to avoid would be sensible.

As far as moderating goes, I’d like a tick box when you report a post to highlight you feel it’s ableism or racist or sexist. I’d like those post given a fast track to moderation. My experience is that it’s only really slow in the evening/weekends but is often prompt and fair.

Thoosa · 20/01/2022 18:04

It’s a poem

That’s an incredibly generous description @ENoeuf Smile

I hate that piece of text. I’m all triggered now and will need a macaroon to calm down. Grin

5zeds · 20/01/2022 21:37
Grin
ENoeuf · 20/01/2022 22:27

@Thoosa I practice being nice a lot