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From the linked above thread you will see many autistic people who feel that MNHQ allow many posts which are based on outdated, inaccurate and harmful stereotypes of autistic people.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Their partners and many of us view this as extremely offensive as again, this self diagnosis is based on these outdated stereotypes (please note an individual self-diagnosing themselves is a totally different issue and though an important discussion, not one I intended to raise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 This is a very outdated term which many of us find very offensive as it is based in a neurotypical person’s view of us and not on our actual “lived experience”.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

[quote Innocenta]@LilyMumsnet I have not posted any screenshots myself, but could you please clarify how providing proof of what, specifically, someone has said in a directly relevant related thread constitutes derailing? Given that all sides feel their words are being misrepresented... [/quote]
Hello,

When a thread becomes about multiple threads, and people search up others posting histories, it quickly becomes misrepresented when taken out of context. It's also unlikely to stay on track. We don't allow this anywhere else on site, and so site stuff is no different in that respect.

I wouldn't like screenshots of comments I've made on other threads being posted on a different thread, seems unfair somehow 🤷🏼‍♀️
Thanks for reopening Lily, I'm interested in the (pleasant) discussion.

Yes thanks for reopening. Can I ask @LilyMumsnet if there is any asnwer to original question; why a thread looking for positive autism stories was shut down (due to an offensive title) yet a thread which suggests all partners married to an autistic person require support is not considered offensive?

Leaving aside that thread's content, having a title which generalises all such autistic people (ie that all partners need support due to our negative behaviours) and one that uses Asperger's which several people have said they find offensive due to the nazi link (and is no longer being used under ICD-11)

Also - has there been any discussion at MNHQ in general about the ableism directed at autistic people on this site? It is a big problem yet many people - some of whom are commenting on this thread - seem to think that it doesn't exist. If lots of autistic people are saying they are offended (I most certainly am and I think there are many others) then surely this warrants a meaningful, but peaceful, discussion?

Wasn't that why Hebe asked me to post here in the first instance?

I hope it doesn't just become an echo chamber.

All Drs practicing in Germany during world war 2 have a “nazi link”. I find it offensive that suggesting that anyone who stayed with their patients during that time as oppose to, say, relocating to the safety of America is unmentionable.

What changes are you actually looking for in the moderation? I personally wish there was a way of flagging and somehow fast tracking disableist and racist threads particularly for moderation. I think it’s probably hard to understand how really awful it can be to see those posts stand unless they directly effect you.

Hans asperger was directly involved in the eugenics programme, not just a doctor.

I agree, @5zeds, a specific reporting option for ableist, racist, etc, content could be good for MNHQ to consider. I think it's a mistake to view this moderation issue as an autism-related problem when so many MNers continue to complain of both racism and ableism on the site.

I'm not at all denying that there are also autism-specific issues, btw, such as the thread titles OP refers too, which I agree are ableist. There needs to be a healthy balance between determining which problems with the moderation are endemic and affect the whole site, and which are more focal to autism.

@HerRoyalHappiness how would you stay working in a hospital/facility for disabled children without being part of “the final solution” in Nazi Germany? Aspergers “little professor”/“special gifts” characterisation of autism may have delayed the death or even saved some autistics. At the beginning of the pandemic the decision was made HERE in the UK not to treat those with learning disabilities (which as you know is the majority of autistics) if they required intubation. This is not excusing either behaviour but simply pointing out that it’s not simple.

I never said it was simple.

Perhaps a discussion for another day and an indication of just how difficult it is to moderate with so many conflicting ideas about what is or isn’t problematic?

Can I ask please what the position is on someone like me posting on this thread? Thank you.

Anyone can post on any thread. How could anyone know what you are “like”?

@5zeds

Why are you here? It seems like you are denying that there is a problem with ableism directed at autistic poster, despite autistic posters stating that there is. It’s really not difficult to see the ableism and suggesting that because there are different views on terminology therefore it’s too difficult a problem to solve is pretty lazy in my opinion. A bit like the poster who said something along the lines of “anybody can take offence at anything these days”.

I still don’t have an answer from MNHQ about the deleted vs in deleted threads. I still don’t have an answer from MNHQ about how they plan to deal with autistic prejudice in this site - despite them asking me to start thisthread - why??? And it’s leading me to the conclusion that because non-autistic people cannot see the problem themselves, it’s not worth fixing.

So well done to all the posters trying to derail the thread. With complicity from MN it seems like you have silenced us - ie autistic people who typically aren’t the best communicators - yet again. You have shut down what could potentially have been a productive discussion - - where I actually thought there was a slight chance of progress. I cannot express how sad I’m currently feeling.

Not to derail (too much!) on the subject of Hans Asperger, but I wonder if given the controversy around the term it’s probably best avoided by anyone who isn’t either referring to themselves or to someone they are 100% sure identifies as that?

@BachAndByte

Not to derail (too much!) on the subject of Hans Asperger, but I wonder if given the controversy around the term it’s probably best avoided by anyone who isn’t either referring to themselves or to someone they are 100% sure identifies as that?

That is eminently sensible but I can assure you MN disagree as they have point blank refused to change the title of the support thread.

I do totally agree with your position however - it is not without precedent in other protected groups where they can choose to use words to describe themselves but it would be wholly inappropriate for anyone outside that group to use.

@HypocrisyHere I’m not sure I have to declare why I’m here but I assume that given it’s a thread rather than you communicating directly with mnhq by email a range of views is of interest and I absolutely HAVEN’T denied that ableism is a problem and can’t imagine why you would say that. Rather than trying to derail your thread I tried to focus it by saying “ What changes are you actually looking for in the moderation? and going on to identify what I think would improve things “ I personally wish there was a way of flagging and somehow fast tracking disableist and racist threads particularly for moderation. “ possibly you can guess why I’m here from my last sentence “ I think it’s probably hard to understand how really awful it can be to see those posts stand unless they directly effect you. “

I believe I am on the spectrum. I’ve been through the diagnosis process with one of my children but I’m not officially diagnosed and I’m not able to pursue a diagnosis for myself at the moment.

But if I’m not welcome here I won’t post - I am getting a sense that I’m not. Which I feel is a shame.

@BachAndByte

Not to derail (too much!) on the subject of Hans Asperger, but I wonder if given the controversy around the term it’s probably best avoided by anyone who isn’t either referring to themselves or to someone they are 100% sure identifies as that?

That's exactly how I approach it. I wouldn't use the term to describe someone - sole exception being if I know they personally use and identify with it. In my view, that's a balance that respects everyone and also tracks with the wider community's needs (re: use of controversial terminology to describe divergences, conditions, disabilities, etc.).

@Ovenaffray - I don't think you should let OP put you off. There will always be people who want to gatekeep, and their reasons will vary. But it's a public thread on a public forum; the reality is that assessments and diagnosis can be inaccessible due to systemic problems, so attempts to restrict commenting to people with a formal diagnosis seems inappropriate (imo). And also fails to account for how things like trauma and other intersecting forms of oppression can make accessing an assessment even harder.

Furthermore, the poor moderation surrounding ableism is of interest to many, and does overlap with the general lack of understanding MNHQ shows regarding systemic inequality. This isn't to say there aren't problems (on the site) unique to autism, but it's totally understandable why others want to contribute. The assumption that disagreement = NT (and therefore a poster's opinion is worthless) is invidious, and often inaccurate!

I should point out I am also physically disabled as is one of my children and that is diagnosed and obvious so I do get the ableism and understand that. Even if I am not officially diagnosed with an ASC.

@Innocenta

Where did I say that @Ovenaffray wasn’t welcome? Please state exactly where I’ve said this or apologise to me for accusing me of gatekeeping.

Anyone, absolutely anyone, can post on this thread but I would hope that those who do, do so with good intentions and not to try to derail or deny there is a problem.

Also - an individual suspecting themselves to be on the autistic spectrum is very, very, very different to a partner self-diagnosing their partner without the partner being in some sort of agreement. Most of us who were diagnosed later in life obviously started from a point of “I wonder if…..” . The time between suspecting and then assessment, which is long for many of us, is an incredibly hard period and I have utmost sympathy as my own MH was deeply effected during this time.

So no gatekeeping and no disregarding of those who suspect they themselves may be autistic.

But @HypocrisyHere I HAVE self diagnosed my ex. I STRONGLY suspect he is on the spectrum. I base that on the experience of diagnosis for my child, and comments by professionals, in the same way that I do for myself.

No interest in gatekeeping, but I do think that anyone without a formal diagnosis should post with the awareness that they may not necessarily be correct in thinking they / partner are on the spectrum, however much they think they meet the criteria. There’s a huge issue with some autism-specific forums where the self-diagnosed have acted as gatekeepers themselves and have told those with a formal diagnosis that we are “doing autism wrong” / “not really autistic” (both things that have been said to me on one specific forum - I am formally diagnosed)

Having said that, for me there is a big difference between people self-diagnosing having seen the process “up close” with children etc and having a better idea what it involves than someone who’s just done the AQ and decided from that they must be autistic.

@HypocrisyHere - I am referring to the general mood of the thread, to which you have substantially contributed. I have also felt that you and others only want diagnosed autistic people to contribute. I accept that may not be what you want, but it's the impression I took from your (and others') posts, and I am not surprised if others have too. I don't think it's wrong at all to make you aware of this.

I agree with you about not casually jumping to diagnosis of people's partners, etc. As I've said before, there are many specifics of anti-ND ableism where I support your views.

Thank you @Innocenta that’s exactly how I feel.

@BachAndByte I have seen the process up close and I honestly DO feel my ex is on the spectrum. I have tried to encourage him to seek diagnosis but at the end of the day I don’t have headspace to cope with it and it’s hypocritical of me to expect him to.

MN asked me to start this thread in relation to MN and their moderation of posts/threads which autistic posters find ableist.

I wanted it to be a productive discussion where we could highlight inconsistencies to MNHQ and hopefully work with them in addressing the issue. I have pointed out one instance of a huge inconsistency on my other thread but this has not been addressed.

I do feel that autistic posters’ experience is most relevant here but of course anyone who feels the have something constructive to add is of course welcome. I think that is the general approach taken to the BlackMumsnetters section and I was hoping that maybe we could apply that here?

Many autistic posters have commented. But many others have to in a way which I feel is negative. Many unfair accusations have been levelled at us/me

• we want to shut down the support thread - we don’t
• the linked thread was extremely racist (it wasn’t)
• I can’t be offended as I misunderstood OCD
• we are trying to compete with children who have profound issues associated with autism - we aren’t
• we are being ableist by excluding other neurodiverse posters - we aren’t - we are simply arguing for autistic posters to get treated fairly. But any other ND poster should of course highlight to MN is they feel subject to ableism and I’m sure you’ll find most here would be supportive
• we shouldn’t be offended if other non-autistic people want to use the term Asperger’s to describe us.

How that is helping with a positive discussion I don’t know. But yet again a thread which was meant to be positive has been derailed.

There doesn’t seem to be anywhere on MN where autistic posters can speak without being attacked. And that sums up the ableism we face every single day.

Please help change this @LivMumsnet