Autism and MNHQ moderation

[HypocrisyHere]

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From the linked above thread you will see many autistic people who feel that MNHQ allow many posts which are based on outdated, inaccurate and harmful stereotypes of autistic people.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Their partners and many of us view this as extremely offensive as again, this self diagnosis is based on these outdated stereotypes (please note an individual self-diagnosing themselves is a totally different issue and though an important discussion, not one I intended to raise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 This is a very outdated term which many of us find very offensive as it is based in a neurotypical person’s view of us and not on our actual “lived experience”.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

Following.

I would second this- I think there is a need for dialogue for sure, and would love there to be more acceptance. I am an autistic woman, married to a probably autistic man, with 1 diagnosed autistic child and 2 more who are on the diagnosis waiting list. I want a world where my kids are accepted for who they are, not one where the world places unrealistic expectations on them and doesn't try to understand them while all the understanding/ adaptation has to come from the autistic person.

Thanks for starting this @HypocrisyHere. I didn’t comment on your other thread as it was all getting a bit too much of a bunfight for me on there (which, sadly, does seem to be how a lot of threads end up - let’s hope this one is different)

I think one of the challenges for the mods is that it is a very different experience living as an autistic person to living with or parenting someone who’s autistic. I don’t think that having everyone pile on to the same threads helps anyone, but you can’t stop people posting on a public forum.

One of the things I find difficult is that there doesn’t seem to be the same desire to have a support thread for partners of people with any other “brain wiring” issues. Autism is treated differently and almost demonised. I’m not going to get into the whole difference vs disability argument but for me it is impossible to separate “me” from “autism” - the two are inextricably linked. I am not just my condition, but every experience I have had; everything that has shaped me as a person has been viewed through an autistic lens. So when I read, as I have done on here, that people hate autism; that they wish it didn’t exist, that people with autism are selfish and use pathetic, it feels like a personal attack.

So I wonder if there’s something about language used. Of course people should be able to get support with aspects they find difficult. But there is a huge difference between someone saying they find it difficult when their partner doesn’t anticipate their needs and advising people not to be in a relationship with an autistic person as they’ll never get their needs met. There is a difference between someone saying that they wish their child didn’t have autism and them wishing that autism didn’t exist.

I am not sure what the answer is, but I think it’s good to have the discussion.

Also following.

I didn’t comment on your original thread, but the autistic partners support threads have been flagged up for years.

If the "support" thread is the one I'm thinking of, it's best ignored.

Thank you for posting this Hyp. I agree, support is a positive thing, attacking and stereotyping is not.

If someone wants support while divorcing a partner they think may have autism, then they should post on the many support threads for people going through divorce. That's what you'd do if your partner had cancer/ diabetes/ any and every other health condition. People act like dickheads during divorces, all people. Trying to dress it up as "mine is so much worse because he might be autistic" is ableist, stereotyping, and downright ignorant. That's not something that should be tolerated on a forum.

@ClumpingBambooIsALie

If the "support" thread is the one I'm thinking of, it's best ignored.

That’s not really the point of the op though. The point is that posts by parents needing support are deleted because of clumsy titles, where years worth of offensive shite is allowed to stand.

I have ADHD, and my feeling is that it is difficult for a partner to live with (also yes it is difficult for me to live with the expectations and norms of NT people/society in general)

But there are really two purposes of a support group - to allow a safe space for ranting that they don't want the ADHD partner to hear, as well as working through the understanding of this is just how my partner is - it's not a "problem" I can fix - can I really live with this? And the other is to learn to understand ADHD traits and the ADHD mind so that they can gel better with their partner.

I feel like the first is hurtful, but may be helpful and I don't think I mind it existing as long as I don't click on it. The second is fantastic and I wouldn't mind posting on a thread like that to be the "explainer".

I can see that armchair diagnoses are not helpful, especially when they rely on outdated stereotypes and therefore may not even be accurate.

I've been dismayed and upset at the attitude towards autistic people here for a long time. Some things I've read have been truly awful. I usually hide the autistic threads, but why should I feel excluded from something which is about me and my ds? We're already excluded and marginalised enough. The internet is the only place I talk to neurotypicals and try to change beliefs and attitudes towards autism.

The things that I read about autism on this site are grossly out of date and not tolerated elsewhere in autistic spaces or amongst up to date healthcare professionals.

I believe this problem should be addressed. Autistic people are out there and reading this stuff. It's sickening and dehumanising. The autism parents with the high care needs children do not speak for me any more than I would claim to speak for their children. My needs are minimised, dismissed and I'm belittled because I don't have so called high care needs. My needs are different, but just as profound.

My needs are minimised, dismissed and I'm belittled because I don't have so called high care need

This. Even though my care needs, for a 30 year old woman and mother of 3 are quite high. I have to be reminded to care for myself, I have alarms on my phone to remind me to make meals, alarms for bedtime routine, alarms to remind me to fill my water bottle, alarms for my medication. As well as having my carer help me out with other stuff. (I thought this was normal, to have alarms and reminders in your phone for everything until I was diagnosed. That's when I found out other people can manage without. They don't need prompting or telling to brush their teeth or hair, they don't need to be reminded that they should eat or that they should stop eating because they're eating too much)

But because im able to live alone and type on the internet I'm apparently "high functioning" (I hate that term) and my experiences are minimised and belittled

Just to clarify I am not against support threads. I just think they need retitled and caveated not least because they are trying to present themselves as representative (“hopefully some will read these threads and run” is one of the comments on the support thread - this is extremely ableist and offensive)

This is a cut and paste from my 31/12/21 12:09 post on the linked thread:

What I personally would find acceptable is a thread which was titled “support thread for those in difficult NT/ND relationships”

Then I think the opening post should make the following statements (example wording - I’m sure it needs to be tweaked)

1. All partners - NT and ND - are allowed to comment
2. No generalisations of either neurotype
3. This is not representative of NT/ND relationships as a whole - it is on an individual basis only
4. All responses should be civil
5. There should be no repetition of autistic myths such as “no empathy”, cold and unfeeling, that there is no such thing as “mild autism” and that “very high functioning” makes no sense (HFA = IQ of over 70 - not that they breeze through life with no issues)
6. all responses should be based on personal experience - and no one should state the person is wrong in feeling a certain way

I think if these caveats were made then though I know that the content would be mainly driven by unhappy self-diagnosed NT spouses, most people will have at least been given some context and it will not be seen as a definitive description of ALL autistic partners

I would probably add a further caveat:

1. Remember that any person, neurotypical or neurodiverse, can be deeply unpleasant and abusive. All partners in such relationships should be supported.

Following

I think the threads which are titled along the lines of 'my dh is an arsehole, does he have adhd/asd' kind of thing etc. shouldn't be permitted. People are just causually throwing out really offensive things about autism and adhd, but particularly autism. We're not sub human, most autistic people are able to navigate the Internet and read stuff like this. Many of us have been diagnosed later in life. We're sentient, we think, we feel, we have emotions, marriages, children, jobs, we drive cars and go to Tesco. You can't slip in nasty ones (posts) like in the past and assume nobody who's autistic is reading. Times have changed. The world has changed. We exist and we're out there and at least deserve not to have to read nasty eugenics type stuff or tolerate offensive stereotypes.

BingoLing — agreed, but that "support" thread (in all its iterations) has been wanking offensively on for years, despite many, many complaints about it, so continuing to read it, even if it's to gather more evidence to use as supporting evidence, is probably a waste of emotional energy.

(because MNHQ are quite clearly never going to do anything about it)

@ClumpingBambooIsALie

BingoLing — agreed, but that "support" thread (in all its iterations) has been wanking offensively on for years, despite many, many complaints about it, so continuing to read it, even if it's to gather more evidence to use as supporting evidence, is probably a waste of emotional energy.

I think HQ just got serially shouted down by the disgruntled spouses who want to be left to perpetuate stereotype and negativity TBH, and they caved.

I quite understand how miserable a marriage of incompatibility can be but ableism and plain bigotry slides into those threads abundantly billed as “venting”.

Maybe time to revisit it again?

because MNHQ are quite clearly never going to do anything about it

Neurotype supremacy presumably. The distress of the neurotypicals trumps the distress of the neurodiverse. Only their distress is accepted as valid whereas we're viewed as the source of the distress so have brought everything on ourselves.

Neurotype supremacy presumably. The distress of the neurotypicals trumps the distress of the neurodiverse. Only their distress is accepted as valid whereas we're viewed as the source of the distress so have brought everything on ourselves.

MNHQ have made huge strides in racial politics recently, so let’s stay hopeful the scales will fall from their eyes on this long running situation too.

I quite understand how miserable a marriage of incompatibility can be but ableism and plain bigotry slides into those threads abundantly billed as “venting”.

True

I can't understand why they can't just make a thread about how they're generally incompatible within their marriage and go from there.

Why should autistic people be subjected to offensive tropes about autism merely because they selected a mate who's incompatible and they're now complaining about them.

Maybe time to revisit it again?

Possibly. With fresh soldiers, undimmed in enthusiasm, perhaps.

MNHQ have made huge strides in racial politics recently, so let’s stay hopeful the scales will fall from their eyes on this long running situation too.

Let's hope so 🙏

@BarrowInFurnessRailwayStation

because MNHQ are quite clearly never going to do anything about it

Neurotype supremacy presumably. The distress of the neurotypicals trumps the distress of the neurodiverse. Only their distress is accepted as valid whereas we're viewed as the source of the distress so have brought everything on ourselves.

This is exactly the problem.

That thread is beyond gross.

Thanks for your thoughts - we're going to continue discussing the points raised on this thread and the previous one.

We do understand how hurtful some comments can be - as already referenced; anything that generalises or assumes any xyz negative trait is due to Aspergers or Autism will likely break our GLs and will be removed if reported to us. We want to be a place where women can seek support from other women about their relationships - in many cases, they’ve no one else to talk to & are at breaking point. Removing that support is potentially very damaging and cruel.And so this is why we introduced some guidance specifically for these threads - posters can talk about their own personal lived experiences, but are asked not to generalise. We also understand the frustration of an ‘armchair diagnosis’ but also appreciate the difficulties around obtaining a diagnosis in the first place.

We’re not claiming to be experts here and nor do we get it right every time - but we strive to be fair and balanced and it’s certainly never our intention to cause upset. As always, your feedback is welcome.

Am very much in favour of issue-specific support threads being facilitated, even on contentious issues. I would be fine with the existence of a support thread for partners of autistic people even where I found some of the posts and scenarios upsetting for personal reasons. But those threads in particular seem to have an ongoing culture that perpetuates harmful ideas, alongside whatever legitimate support and discussion is ongoing. The problem with this kind of harmful thread culture is that it's not always possible to pinpoint specific excesses in individual posts, to the extent that they break rules.

@YetAnotherBeckyMumsnet

As I’ve said, I do want there to be support thread - but could at the very least the title be changed so that is less offensive and generalising (surely it breaks talk guidelines itself?). Can it not be for problematic NT/ND relationships rather than just the assumption that all are hard.

I also think some of the caveats I have suggested, or wording similar, would make a huge difference.

We are not asking for this support to be withdrawn, only that it is changed to be less ableist - because you can see for yourself that so many autistic people find it offensive.

(And please remember most of the posters have self diagnosed their partners - there are many conditions which can result in traits which some may believe are autistic traits - it’s simply not fair that autism is used as the catch all. Please do not through autistic people under the bus just to allow people to get support (which I personally want them to get)

please can you confirm if you are still considering any changes, or if you have made your final decision?