MN and their approach to autism

[HypocrisyHere]

I have attached two screenshots. One showing the two threads I’m watching, the other the deletion message from the first watched thread which was deleted.

The subjects of the two threads are

(1) Any ‘positive’ autism stories?
(2) Married to someone with Asperger’s: support thread 5

My confusion is that the first was deleted because “the title was not in spirit of the site” Yet thread 2 - which has (IMO) a deeply offensive as it implies all people with Asperger’s are a problem in a relationship (leaving aside the ghastly ableism within the thread) is absolutely fine?

Thread 1 was from a concerned parent who may have used clunky wording but was looking for support - yet she has been deleted. Thread 2 is for concerned partners who can blame every poor behaviour of their partners on autism and that’s all fine?

As an autistic person this makes no sense to me at all and highlights not only ableism within MNHQ but also a deeply inconsistent approach to moderation?

(Have name changed as I’m a coward)

I have autism and last week there was an autism bashing thread that was so bad it made me cry.

I begged MN to delete it but they didn’t.

It was the one about the noisy autistic teenage neighbour (if anyone remembers?)

It was disgusting.

A few months ago someone on MN told me I was likely to have been an unpleasant and annoying child because of my autism. MN didn’t delete their post despite me reporting it. Cried then too.

FWIW i was a quiet and lovely child. Never in trouble and had lots of friends. I just knew I was different and didn’t know why.

Nothing ghastly and monstrous about me at all.

There’s a difference between asking for advice on MN & categorising every autistic person as a disruptive and rude human.

The clue is literally in the word “spectrum”. I.e a whole SPECTRUM of personalities

I disagree with you ALL completely, utterly. 2nd thread is a support thread, been running for ages. 5+ threads. For those who are married to an AS partner. It's helpful and supportive, for those with questions, those that need support.

You can have zillions of similar threads : are you married to someone with a : cancer / eating disorder / diabetic / anything.

Objecting to it seems odd.

I would massively appreciate it if some NTs could acknowledge that some NT behaviour affects us negatively (and indeed can trigger bad behaviours in us).

I think people just don't post about this though because it's just something that you do everyday when you live with someone with ASD. You adapt your behaviour to the point that you don't even notice anymore? Speaking as someone who lives with 2 people with ASD there are loads of things I do to make my behaviour more acceptable to them. I've massively changed the way I express myself, the way I look for support, the amount of practical help I expect from them vs someone that is NT, the events we go to, the food we eat etc etc. This is just normal life now though, I don't think they even realise how much I don't do/ask for that I would like to because it is just how I adapt for them and they take it as that is just how I am iykwim?

They are more than welcome to moan about me on an anonymous website though, I am secure in myself and know that I can't do anything else to adapt for them. I would much rather they took their moans to someone else rather than adding it to the list of things I have to do for them tbh. I can't imagine having an issue with ND people that I don't know moaning about their NT partners that I also don't know in the same way that some people here seem to take offence to things when they are the other way around, I do feel like posting and saying 'it's not about you' when I see people getting riled up about it.

@woodlandarchitect

That’s really shit, but sadly not surprising.

As others have said, yes our behaviours can cause issues for NTs but what is never acknowledged - for me at least - is that every single working day their behaviour impacts negatively on me (and I don’t think I’m the only autistic person who will say that) But because they are the vast majority, their behaviour is assumed to be right and mine to be wrong. So I spend all my working life trying to behave as neurotypically as possible and that is exhausting and soul-destroying

My DS is diagnosed with ASD my DD we suspect has it and she points out a version of the above to me on a regular basis. Good on her I like knowing her inside world as best I can and I appreciate when she tells me a bit more about her perspectives and needs.

Hypocrisyhere do you have links to any resources about the trauma of growing up undiagnosed? That strikes a massive chord with me.

Thanks xx

I would massively appreciate it if some NTs could acknowledge that some NT behaviour affects us negatively (and indeed can trigger bad behaviours in us).

I fully acknowledge that, and do my best to modify my behaviour around DP so that he isn't affected. It's his home as well as mine, and I want him to be happy. I have also, at his behest, spoken to his colleagues, and boss, about it, suggesting ways in which they can modify their behaviour around him, and also 'explaining' some of the things dp does which a NT person would interpret differently to the way he intends. It's a shame it was necessary, but something had to happen and at least there is now understanding and better communication all round.

I found the threads useful for info-gathering and a place to rant to people who understand, in the same way, had dp been so inclined, he might have liked to rant about how awful I was to live with when I was deeply depressed. But I acknowledge that some of what was said there is hurtful.

@woodlandarchitect

I have autism and last week there was an autism bashing thread that was so bad it made me cry.

I begged MN to delete it but they didn’t.

It was the one about the noisy autistic teenage neighbour (if anyone remembers?)

It was disgusting.

A few months ago someone on MN told me I was likely to have been an unpleasant and annoying child because of my autism. MN didn’t delete their post despite me reporting it. Cried then too.

I remember that thread. Some of the posts were inexcusably ignorant and cruel.

Autism is the one condition about which MNHQ allows absolutely anything to be said. It is terrible moderating.

They want support to leave them, not support to love them.

And? Women aren't beholden to stay with their partners, a support thread sounds good. They aren't saying I'm leaving them just because of that, these are women that have loved, moderated and changed their behaviour and expectations over the years and have reached the end of the line in terms of how they want to live. That's fair enough.

I would massively appreciate it if some NTs could acknowledge that some NT behaviour affects us negatively (and indeed can trigger bad behaviours in us).

And lots do, but there seems to be an idea on some threads where people are made to feel bad about finding something challenging because how dare they. Why doesn't this work both ways? Of course people with autism cannot adapt their behaviour in the same way, but a very noisy and disruptive neighbour is very hard to cope with, why can't people say that on an anonymous forum without being berated? What level should people be expected to put up with things at a huge detriment to themselves because its unfair otherwise, meanwhile adapting their behaviour?

I also agree about the gatekeeping, there was a thread a while ago about how everyone with autism leads a regular life, a mother posted about her son needing a high level of care and was dismissed and told her experience wasn't important as she isn't autistic herself. But her son cannot use a computer so I do feel that those in the same position often don't have their voices heard. The meltdown thread as well was pretty ridiculous.

Of course people with autism cannot adapt their behaviour in the same way, but a very noisy and disruptive neighbour is very hard to cope with, why can't people say that on an anonymous forum without being berated? What level should people be expected to put up with things at a huge detriment to themselves because its unfair otherwise, meanwhile adapting their behaviour?

I think autistic adults are often forgotten too. My DB lived next to a similar child, but being autistic himself he found the noise hard to live with and had to move. He spoke to the parents first who basically said tough shit, he can't help it and we need some peace (they'd put him in the garden for hours upon hours and go indoors presumably to get some respite), and he's an adult and needs to deal with it- good isn't it that it dissapears when you turn 18 evidently!

Oh FFS. I thought those ableist people whining about their other half on those threads had taken their unpleasant ableism elsewhere?

I feel very sorry for their partners.

Imagine having threads where people are complaining what a bind it is being married to someone confined to a wheelchair.

Those threads make me mad. The last time I tried to politely point out the unreasonable ableism, this guy piped up with ‘oh you sound exactly like my wife’

MNHQ - why are these indefensible threads still being enabled by you?

@Queenoftrivialpersuit

Why did you post this thread. It’s about another thread therefore it will be deleted. Also people are allowed to say what they like about their own OH

Not when it’s damaging and discriminatory towards an entire community.

The second thread title has kept me awake at night worrying about my DS who has ASD.

As an adult autistic I've been on the partners of autistic threads pointing out it's not exactly fair blaming someone's neurology for issues and have they tried seeing things the way their partner might?

(To be clear I'm not saying us autistic never do anything wrong but there are two sides to everything and trying to explore that isn't wrong within itself)

They don't want to know. There appears to be an absolute hatred of anyone autistic on there which is really sad. I even tried framing their posts back at them and asking if that was an OK thing to say. Didn't go down well.

I don't think the way people are allowed to speak about those of a different neurology would be allowed with any other group, to be honest. It makes me really sad that it's supposedly ok here.

It's one of the reasons I've massively stepped back from mumsnet as a whole.

As an adult autistic I've been on the partners of autistic threads pointing out it's not exactly fair blaming someone's neurology for issues and have they tried seeing things the way their partner might?

But similarly they shouldn't feel some sense of duty to stay with someone when they aren't happy just because its not their fault. That's not fair on either partner, millions upon millions of people with ASD are very happily married, it's fairer to also set them free so they can be with someone who loves them as they are and isn't miserable as well as for the one who wants to leave.

That's fine. Leave, then.
I'm not saying you can't complain, of course not. But the hatred on those threads 1-5 and the enablement of hate speech is next level. It really is.

[quote HypocrisyHere]@Mickarooni

That’s a ridiculous comparison. It would be more akin to;
Married to a person with OCD: support thread
Married to a person with physical disabilities: support thread
Married to a person with depression: support thread

The only example that I agree with is the depression one as this is an illness which does need to be treated. But your other two examples are shocking - having OCD or. Physical disability is a fundamental part of the person - they are not “wrong” - they are not illnesses and their characteristics would have been present when the couple initially met!. So the decision should have been made then, as you got to know the person, if you could “cope” with the neurological or physical difference.

Further, a partner can walk away from the relationship, a parent can’t. And btw the vast vast majority on the support threads have very little interest in making their relationships work - they just want out.

So comparison not valid and reveals your prejudiced view of less abled people which is extremely offensive.[/quote]
I have a dc with OCD, of course it’s an illness and it is ‘wrong’ and they are being treated for it. What a stupid ignorant post.

@BishopBrennansArse

That's fine. Leave, then. I'm not saying you can't complain, of course not. But the hatred on those threads 1-5 and the enablement of hate speech is next level. It really is.

Maybe we have read different threads then.

FFS

If autism didn't cause problems it wouldn't be a disability.

Anyone who thinks living with someone with a disability, any disability, doesn't come with unique difficulties, challenges and, yes also, unpleasantness is delusional.

Why on earth shouldn't people talk about the difficulties, challenges and unpleasantness? Especially if it helps deal with them and find a balance and solution that works for them. Carering is underpaid, undervalued and hard

I didn't comment on the positive thread because I can't think of a single positive thing that comes as a result of DS's diagnosis of autism. Hes an awesome kid; but none of that is because of the autism, it just makes his life harder and more painful, literally painful. (And autism
isnt even his main problem) The OP was looking for positive stories so I passed on by. (I didnt read the thread again so I dont know why it was deleted)

Just because you dont want to see the negative doesn't mean it isnt there, just because you might not want to talk about it doesn't mean that others shouldn't.

Most people call that emotional support not ablism. A good many people with autism will have someone they rely on. Let's keep those people sane. Ultimately the person who benefits most is the person who needs the support.

You are not helping people with autism if you kick away their supports in the name of "ablism".

@Caramellatteplease

FFS

If autism didn't cause problems it wouldn't be a disability.

Anyone who thinks living with someone with a disability, any disability, doesn't come with unique difficulties, challenges and, yes also, unpleasantness is delusional.

Why on earth shouldn't people talk about the difficulties, challenges and unpleasantness? Especially if it helps deal with them and find a balance and solution that works for them. Carering is underpaid, undervalued and hard

I didn't comment on the positive thread because I can't think of a single positive thing that comes as a result of DS's diagnosis of autism. Hes an awesome kid; but none of that is because of the autism, it just makes his life harder and more painful, literally painful. (And autism
isnt even his main problem) The OP was looking for positive stories so I passed on by. (I didnt read the thread again so I dont know why it was deleted)

Just because you dont want to see the negative doesn't mean it isnt there, just because you might not want to talk about it doesn't mean that others shouldn't.

Most people call that emotional support not ablism. A good many people with autism will have someone they rely on. Let's keep those people sane. Ultimately the person who benefits most is the person who needs the support.

You are not helping people with autism if you kick away their supports in the name of "ablism".

Ok, would you think it reasonable posting threads about husbands and wives with cancer and how unpleasant that is?

If not, why not?

My kids all have autism too. We are all completely different and I know we each find different facets challenging.

We don't go around accusing each other of practically being Satan because of it.

@Itsnotover so instead or responding to one of the many points the poster has raised, you instead just ask what about x as a gotcha? This is the bigger problem on these boards to be honest, people being minimised who also have experience of it but obviously not the right type of experience. A cancer support thread sounds like a great idea as it goes, it is really hard knowing how to best support someone whilst keeping day to day family life going- and there is a woeful lack of in person support and it can be hard for people to feel comfortable about talking to family and friends who directly know the person. An anonymous forum sounds like an ideal place someone can be honest and seek support.

@Itsnotover I think it's perfectly fine to have a thread about how a partner's cancer is affecting someone's life. What's wrong with that? It doesn't mean you hate the person. My mum has Alzheimer's. It's not her fault. She drives me up the walls. Sometimes I need to let off a bit of steam about it because it impacts my life A LOT. DS1 is in the process of an autism assessment. Much of what we have learned is making us realise that DP is very likely on the spectrum too. As a result, I am more understanding of certain aspects of his behaviour and how he views the world. Am I not allowed to discuss this or have a bit of a moan about how it has affected me for the last 30 years? Or do I not matter?

it's not exactly fair blaming someone's neurology for issues and have they tried seeing things the way their partner might

My back and shoulders hurt because I have to push DS's wheelchair. I have to push DS' wheelchair because DS needs it to get out the house and his disability means the NHS won't fund a wheelchair.

I can exercise and strengthen up to improve matters. But fundamental my back and shoulders hurt because DS's disability.

DS doesn't particularly want to be in a wheelchair. He especially doesn't want to be tied to mum to go anywhere. It has impacted on every aspect of his life.

Just because I can see that from his perspective doesn't change the fact my back and shoulders hurt because DS's disability. I resent DS's disability because most of the last 14 years if I have been out the house with DS I have been stuck behind a sodding wheelchair. DS's disability is absolutely to blame.

I personally wont give up pushing DS until it utterly ruins me body and I can't. Doesn't mean I dont sometimes want to rant up a storm or I dont understand why others might not have the physical strength to cope.

Does that discussion become more acceptable because I am talking about physical difficulties and physical cost? If you replaced those difficulties with autism related difficulties and mental/emotional strength/cost, is that suddenly a discussion we shouldn't have.

Disability is not fair. On anyone.