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)

But all MN armchair psychologists know. It's a sort of superpower. And they're never wrong.

@DontTellThemYourNamePike

I'm not talking about anyone specific on here - I am thinking of the parents of some autistic twins I knew about 20 years ago. I have a lot of years of spotting this kind of thing.

Unfortunately parents are encouraged to think that autism is the worst thing ever. It's almost always genetic.

@Caramellatteplease

Given even on this thread there isnt uniform concept of what ablism is, I'm not sure how MN could moderate to a set standard.

Suggesting it's down to money is nonsense

Well, I'd suggest it's naive to think that websites don't have their own agendas. Everyone and everything does.

Unfortunately parents are encouraged to think that autism is the worst thing ever. It's almost always genetic.
Yeah, parents are told how hard their life will be, how terrible it all is.

@HerRoyalHappiness

Unfortunately parents are encouraged to think that autism is the worst thing ever. It's almost always genetic. Yeah, parents are told how hard their life will be, how terrible it all is.

Depending on the presentation of the person with autism, actually life can be hard for both parents and children. My life is very hard and sometimes, yep it feels terrible. It’s still a worthy and valid existence and we have many joyous moments and loads of fun. Life is harder for my son than most his age and I wish I could make it easier. I’d hate for anyone to think that all life with autism is hard all of the time. It’s not true but equally, I don’t want our experiences to not be recognised. I need support - both emotional and practical, as does my child. Acknowledging the difficulties is helpful for me and doesn’t take away from the positives. :)

Yeah, parents are told how hard their life will be, how terrible it all is.

When my son was diagnosed at age 3 I had lots of people telling me how wonderful it was and how it should be celebrated. Several years down the line we spend our lives trying to keep him alive. He's not continent and may never be, he is awake 20 hours round the clock. He self harms, bites chunks out of his hands as a stim, headbangs. Can be very violent to us, his diet is so restricted we may soon need a feeding tube. His learning disabilities put his mental age at 0-11 months and he has no language, no ability to use visuals and no understanding of makaton. He doesn't even respond to his own name. We do everything to keep him happy but the world is very difficult for him. He will need 24 care for the rest of his life. It has massively impacted our lives and his brothers. For him it is definitely a disability, and causes him massive pain and misery. I wish someone had warned us what it would be, so we could be more prepared. This is profound autism. High or low functioning is ambiguous, profound is exactly that.

Acknowledging the difficulties is helpful for me and doesn’t take away from the positives
I agree we should acknowledge the difficulties, its not all sunshine and rainbows. But it's also not the end if the world. Most people ask my mum how she copes. She's even been asked if I should have grown out if it by now... while I was sat there in my wheelchair...
When I explain to people I'm autistic my mum gets sympathetic looks and "oh it must be hard for you"
No acknowledgement of how it is for me, or how we've had many many joyous and fun times over the years.

@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

@RonniePickering

Why is that ok, for these neurotypical parents to seemingly be an honorary part of the autistic community to the point that they are an overwhelming voice within it, but it's not ok for partners of autistic people to talk about their experiences?

Hmm... because those parents are raising those children for at least 18 years, so have some idea, where a partner may have known them for a couple of years at best? And it's not an overwhelming voice in my case, my son can't actually talk, at all.
I do believe everyone needs support though and I don't want to argue with anyone 🙂
Peace and love to all 💕

If somebody is married to someone autistic presumably they've known them more than a couple of years in the vast majority of cases.

Yes the voices of parents of autistic children - usually the children who are most disabled by autism - are a disproportionately overwhelming voice in the community. Partly because they do not actually have direct experience of being autistic yet shout down lived experiences of autistic people (obviously not all of them, but a depressing proportion, mostly the most vocal ones), partly because they often say very offensive and discriminatory things (again not all of them) and partly because they are so often totally oblivious to how some autistic people experience the world or interact and assume we are all the same, or even worse, that there are "severe" and "less severe" autisms based on how they experience somebody else's disability.

Those "support" threads are vile though. All of the PP who said imagine substituting another protected characteristic into the title and how long MNHQ would let it stand are spot on. It's disgusting, and yes those threads have been reported SO many times for the awful and factually wrong generalisations about autistic people, the blaming of shit behaviour on autism even though a) it likely has nothing to do with autism even if the person did have it, and b) in many cases there has been no diagnosis anyway.

It's horrific stereotyping, stigmatising and discriminatory hate yet Mumsnet lets it stand. No idea why.

Yes the voices of parents of autistic children - usually the children who are most disabled by autism - are a disproportionately overwhelming voice in the community.

That is so true.

I will say something about being autistic and a parent will try to top-trump oppression olympics me by whining about their child's autism - my own experience of my condition is not as valid or as important as their experience of their child's condition.

It's tedious so I just ignore them.

@AlfonsoTheGoat

Yes the voices of parents of autistic children - usually the children who are most disabled by autism - are a disproportionately overwhelming voice in the community.

That is so true.

I will say something about being autistic and a parent will try to top-trump oppression olympics me by whining about their child's autism - my own experience of my condition is not as valid or as important as their experience of their child's condition.

It's tedious so I just ignore them.

I have so many friends that have actually had to leave support groups for autistic people because there are so many NT parents of autistic children there shouting down and invalidating their experiences just because they don't match how they experience autism in their own child.

I can't imagine another protected characteristic where this would be tolerated, a takeover of charities and support groups and campaigning organisations, for example a charity set up to help black people with white parents taking over, or a charity set up to support gay people with straight parents taking over.

It's bonkers and it's very depressing that Mumsnet can't take an appropriate stand on stopping the hateful comments made daily on the site. If it was about race, they definitely would. I don't understand it.

I stay off a lot of the "autism sites/pages" to be honest TheCatsKilledTheGonks, the comments from both parents and those who are autistic can be pretty upsetting to read.
I do sometimes contribute on MN threads though to parents who may be seeking some positives.

I have so many friends that have actually had to leave support groups for autistic people because there are so many NT parents of autistic children there shouting down and invalidating their experiences just because they don't match how they experience autism in their own child.

While I sympathise, it makes me laugh when I remember that NTs are supposed to be the empathetic ones. I rarely see this quality on MN or in the wild, though.

@AlfonsoTheGoat Disagreeing with you doesn't make someone unempathetic, though. It's perfectly possible to understand and empathise, but still to have a different POV - or to feel that you could be missing out some important stuff in your analysis. That doesn't make your perspective invalid or wrong or unimportant, of course.

(And before you assume I must be neurotypical - I'm not.)

@AlfonsoTheGoat

Yes the voices of parents of autistic children - usually the children who are most disabled by autism - are a disproportionately overwhelming voice in the community.

That is so true.

I will say something about being autistic and a parent will try to top-trump oppression olympics me by whining about their child's autism - my own experience of my condition is not as valid or as important as their experience of their child's condition.

It's tedious so I just ignore them.

“Whining about their child’s autism?” That’s a vile thing to say. Carers matter too! The legislation for social care recognises carers have needs in their own right.

@TheCatsKilledTheGonks

I would not be pleased to attend a support group to find that other people with autism think they have some god given right to tell me how my child experiences HIS autism based on their experience. Nobody speaks for my child. I am forced to advocate for my child but I try to get him to express himself as much as possible.

I've never really bothered with adhd support groups, mainly because they mostly appear to be full of the self diagnosed banging on about things that only resemble adhd on a very superficial level. Or adults dx later in life/ awaiting dx that are at a different stage to me because they're still coming to terms with it.

But the one thing I have noticed is that you just don't get the same dx adults versus nt parents arguments when it comes to adhd as you do with autism.

The two people I know best with autism couldn't be any more different. One is a colleague that prefers to use Aspergers, one is a child with extremely complex needs of which autism is only one. I can't think of any two people further apart in their experience of the others needs. And I find it frankly offensive to suggest either my colleague or I have more knowledge of my friends child simply because we're nd and she is merely the nt parent providing 24/7 care.

I'm glad we have moved away from the term "Aspie".
"I am an aspie/DS is an aspie/I have an aspie"
Can't abide that.
Puts the condition before the person, but I've been shouted down so often about this, I've given up.
Now the diagnosis of Aspergers has changed, hopefully "Aspie" will fall out of use.

[quote Innocenta]@AlfonsoTheGoat Disagreeing with you doesn't make someone unempathetic, though. It's perfectly possible to understand and empathise, but still to have a different POV - or to feel that you could be missing out some important stuff in your analysis. That doesn't make your perspective invalid or wrong or unimportant, of course.

(And before you assume I must be neurotypical - I'm not.) [/quote]
@Innocenta, I have no idea why you think I am interested in your neurological status, because I'm not. I didn't tag you or quote you and my post did not follow yours.

[quote crashdoll]@TheCatsKilledTheGonks

I would not be pleased to attend a support group to find that other people with autism think they have some god given right to tell me how my child experiences HIS autism based on their experience. Nobody speaks for my child. I am forced to advocate for my child but I try to get him to express himself as much as possible.[/quote]
Good. Some day I hope to find a group where those of us on the spectrum are allowed / permitted to talk amongst ourselves about our condition without being scolded by parents who feel their experience of parenting children with autism should be primary and that all should hail them.

I realise that i am more likely to find a unicorn in my garden. But hey.

@AlfonsoTheGoat What a bizarrely hostile reply.

I was making an additive point to your observation concerning who is or isn't empathetic. I disagreed with your post and, as such, wrote a reply to it. There is no MN rule that only people you have replied to are allowed to reply to you!

I mentioned I wasn't NT because I thought, based on your posts, that was likely the conclusion you'd jump to.

The first type of thread gets shut down because it always ends up in a bun fight between parents of children with autism and people with autism. The 2nd type of thread doesn't tend to attract the same level of arguing and reporting.

@Spikeyball

The first type of thread gets shut down because it always ends up in a bun fight between parents of children with autism and people with autism. The 2nd type of thread doesn't tend to attract the same level of arguing and reporting.

That's a very good point. I would love to see a thread for autistic people by autistic people. It won't happen, of course, because parents of autistic children will decide that their voices are more important than the voices of autistic people, although all we want to do is to discuss our experiences of being autistic.

Parents have to make it all about them and their ADVOCACY for their children. God forbid we autistic people should ever talk about ourselves.

Perhaps at the heart of the issue is that some autistic behaviours can read a bit like a green light for narcissism, to an onlooker at least. Parents are just people and not suddenly gifted with divine attributes after having children.

@HunterGatherer

I'm glad we have moved away from the term "Aspie". "I am an aspie/DS is an aspie/I have an aspie" Can't abide that. Puts the condition before the person, but I've been shouted down so often about this, I've given up. Now the diagnosis of Aspergers has changed, hopefully "Aspie" will fall out of use.

But isn't this the same as the community wanting to be known an an autistic person. Not a person with autism. Identity first not person first.

The fb autism groups I'm in will mute you if you say your child has autism.