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)

To some people their autism is a disability, to others, it's an identity. For others, it's a mix of the two. This is why autism bashing is as bad as racism or islamaphobia or anti semitism. It's an attack on the core identity of an individual or group of individuals.

The only time I'm disabled is when I'm encountering neurotypicals and their world.

They were talking about how there are other topics which are shut down quickly because they don't benefit the site

They remove threads that will cause brands they make a lot of money from to stop paying their ad revenue- this is usually around one particular topic, it doesn't mean that threads that are left up particularly benefit them more than any other thread. I don't think the traffic to the site wildly increases by autism related threads.

@LunaAndHerMoonDragons that's good you have hidden it if you find it upsetting, self responsibility tends to be lacking on here so it's refreshing to see.

Acknowledging that you struggle is a strength, don’t forget that.

Absolutely agree with this, it's really sad that a culture has arisen where people are judged for asking for support and admitting they struggle, they are people too and shouldn't have to struggle in silence or pretend it's easy and that the self sacrifice doesn't sometimes sting.

They remove threads that will cause brands they make a lot of money from to stop paying their ad revenue- this is usually around one particular topic, it doesn't mean that threads that are left up particularly benefit them more than any other thread. I don't think the traffic to the site wildly increases by autism related threads.

This is something that could only be confirmed or denied by MNHQ themselves. And presumably you're not in a position to have expert knowledge?

@Itsnotover

They remove threads that will cause brands they make a lot of money from to stop paying their ad revenue- this is usually around one particular topic, it doesn't mean that threads that are left up particularly benefit them more than any other thread. I don't think the traffic to the site wildly increases by autism related threads.

This is something that could only be confirmed or denied by MNHQ themselves. And presumably you're not in a position to have expert knowledge?

Neither are you! But yes they do remove threads that don't actually break any of their rules routinely because of pressure from certain groups. Ad revenue works the same on most sites, the support thread has a few pages a month- the current one isn't full after a whole year, how much traffic do you think that's driving? Not everything is about autism and doesn't revolve around it, there is literally zero reason for it to be the case that they keep them up purely to make more money over any other thread. Plenty do get deleted anyway, as mentioned in the first post.

@NettleTea

I think one of the biggest problems - which may well prove to be less of a problem as time moves on - is the fact that until pretty recently getting a diagnosis for all but those at the extreme end of the autism spectrum was just not a thing.

That means that although there is a lot more awareness of autism, it is very likely that if you are an adult in your 40s/50s or possibly mid 30s, you would not have been diagnosed nor supported as todays children are being (although I do acknowledge the level of support and understanding and help to negotiate through life is very varied) and this can have a massive impact on your ability to cope compared to how hopefully our children will be able to cope in the future.

This means that those adults who find they are autistic and its causing problems with their relationship are often in a pretty tricky situation. It means that often they have developed behaviours and coping mechanisms to get by, and many of those are really not helpful for being part of a partnership. And, as I mentioned upthread, feeling different, or stupid, or out of control, and because there are no learnimng difficulties, or even you are high achieving academically or in a work sphere, can be traumatic when you find you cant hold down relationships, when you get abused because you dont see the red flags, when you lack the skills for everyday executive function and self care.

This trauma can create situations where you develope maladaptive behaviours - be it internal anxiety/ self harm/ isolation / attachment problems / crippling self doubt / raging / controlling behaviour / 'tantrums' - these are the classic signs of personality disorders and yes, this can make these undiagnosed/ late diagnosed adults a whole different kettle of fish than the ASD children that we are also discussing.

Learned and repeated behaviour is hard to change, but it is not impossible. My psychologist suggested that, due to socialising and other factors, women are often more self aware and more willing to look at and address the problems in social interaction and understand how their autism has impacted their lives, whereas men seem to be more willing to understand that the autism is the cause but are quite tricky to actively take steps to change habitual behaviour - hence the tendancy for them to often say 'its my ASD and this is how I am' - a fact you often see on the 'married to a man with ASD' threads.

changing a behaviour that has become ingrained is very difficult. when the behaviour gets you what you want and changing it will make life harder, and you are not REALLY that bothered about social interaction beyond getting your needs met often doesnt seem to be worth the effort. It all depends upon your level of sociability within the spectrum - which seem to fall into 4 groups - no need desire for interaction with others / only need interaction for needs being met / want interaction but dont know how / social but 'odd' and needs to control the interaction.

Excellent post. For what it's worth I am 90% certain I have ADD- also that my dad has ADHD and my brother ADD. Our ages range from 40s to 70s. A diagnosis was non existent in our childhoods. So all the dismissive posts about armchair diagnosis piss me off. I'm not a psychologist but have two decades of experience in related fields. Many of us just learned to be chameleons in social settings but it's at home where the wheels come off. Waiting times for adult diagnosis are astonishing and tend to dismiss women because we're rarely out fighting and crashing cars.

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

My little boy is autistic. Sometimes I cry at the nasty ignorant comments posted on MN and I really fear for his future.

So many poster have such a pious approach to autism and HOW DARE YOU SAY YOU STRUGGLE IT’S A GIFT ALL AUTISTIC CHILDREN ARE ANGELS YOU’RE SO ABLEIST ACTUALLY THE CORRECT TERMINOLOGY IS NEUROLOGICALLY DIVERSE ABCD123 YOU FUCKING NUMPTY.

You see I can acknowledge some of the traits that go with some people's ASD as being really great - the superfocus and the 'out of the box' thinking, but to deny the struggles that the child has does them no favours. And in fact indulging behaviour that - once they move into the wider world and want to have a relationship / hold down a job / have friends similarly does nobody any favours either, lest of all the child who is going to end up ostracised or lonely or unemployed.

The role of a parent of a child with ASD is to advocate and to help support their child to achieve what they want, to understand themselves and their problems and to work out how best to move through an NT world to be the best 'them' that they can be. Pretending that the world will simply allow you to do and act how you want just because you utter the magic words 'I am autistic' is not helping, because although there is growing awareness of ASD and workplaces and school are helping with adaptations - if your behaviour is dangerous or abusive or completely self centred, then you wont live a happy life. Im obviously not talking about kids with extreme difficulties, but more the high functioning end, who will want to try to live as regular a life as possible.
Learning to self monitor and self regulate emotion, learning your triggers and how to work around them so they dont crop up, learning 'social niceties' even though they dont make sense to you, or even things like 'how long is it acceptable to speak to a range of people from strangers to close friends about your passionate interest, are skills that can really help to make the childs life easier, as most really dont like feeling anxious or excluded or having meltdowns. These are things that we struggle with - some of the stuff that doesnt come naturally to us, but they are logical skills that can be learned, things like appropriate responses to simple stuff - that just makes life easier for us. And to be honest many of us ASD adults with late diagnosis learnt this stuff through our mistakes!

”Peace to you all, happy 2022 and I hope that MN can perhaps become a place that is a little less hostile to autistic people in the next year.“

I would add to that - perhaps the MN armchair psychologists will learn to leave the diagnoses to the experts?

@AlfonsoTheGoat

”Peace to you all, happy 2022 and I hope that MN can perhaps become a place that is a little less hostile to autistic people in the next year.“

I would add to that - perhaps the MN armchair psychologists will learn to leave the diagnoses to the experts?

Id agree with that!

armchair diagnosis is pervasive, as is armchair self diagnosis.

its tricky because, as above, sometimes there are crossovers between personality disorders, autism and abusive behaviour. The underlying causes for the outward presentation of behaviour can only really be unpicked by an indepth assessment by an experienced professional, and people are complex and can have crossover elements of all.

I hate seeing any abusive man being diagnosed on here as autistic. My son and my partner are kind, gentle, sensitive men. Occassionally they might do something that could outwardly look, in isolation, abusive, but when pointed out they would be mortified as their desire to hurt those they are close to is nil.

I hate seeing people who just wish to act in self centred attention seeking and drama creating ways, who frighten people with their 'meltdowns' and use their MH to control and bully others, 'identifying' as autistic as if it is a catch all for frankly narcissistic behaviour. And then taking over the narrative in every ASD support group - shutting down any talk of problems.

ASD and its related neurodiversities are nuancesd and individual - thats why its now described in a spectrum, with a description of personalised traits of strengths and weaknesses. we are not any different that way than the NT community.

perhaps the MN armchair psychologists will learn to leave the diagnoses to the experts?

So friend who just so happens to be a therapist involved in the diagnosis process happens to comment on your partners ASD when they meet him, not realising your partner doesnt have a diagnosis although you'd wondered though, does that mean you dont have a right to discuss it because the diagnosis is not official?

I was once out at zoo I saw an unknown kid, thought "oh they have autism" then promptly spotted the mother who I'd met through an ASD support group.

Most of the kids I've spotted/encountered in my daily life have since been diagnosed.
My kids have both diagnosed SN, my friends kids have diagnosed SN, some of my friends do, a few of my family are diagnosed. A good number of my friends are therapists and I had proofread reports for them, i did an MA credits essay on Autism and inclusion.

But I guess I shouldn't make armchair diagnosis because I'm not a professional.

Frankly if you end up fully emerged in the world of SN, Autism isn't hard to spot. But I would still say undiagnosed autism if the diagnosis isnt official.

But I guess I shouldn't make armchair diagnosis because I'm not a professional.

Yes. Just because you made a few educated guessed doesn't mean you can diagnose someone on the spot.

A quick google about Asperger's, his treatment of disabled children and his collaboration with Nazi's makes it easy to see why.

It probably was me using aspergers. I dont endorse Aspergers treatment of disabled children by any stretch of the imagination.

Aspergers often presents very differently to high functioning ASD or low functioning ASD or regular run of the mill ASD. All of which are very different from each other. If we lose the titles we lose the shorthand to explain the differences in difficulty and need. As thing stand All of the people i know in RL with aspergers
I know are still happy to use Aspergers,( but then I know people happy with autistic person and aspie) . On the whole I'll use ASD because I know some people find Aspergers offensive , but until theres better terminology I still find the word Aspergers has value sometimes.

The 'arm chair diagnosis' isn't always unhelpful especially when a someone is feeling quite baffled by the out of place seemingly uncaring/abusive behaviour of a partner. Any disorder which includes a challenge in social and emotional communication and awareness is going to present its own set of challenges in a relationship. I don't find people trying to reduce others to their diagnosis but rather suggesting 'have you thought of' autism. DH did many a baffling thing before his diagnosis and others pointing out that perhaps it could be that was indeed helpful.

@bustersword

But I guess I shouldn't make armchair diagnosis because I'm not a professional.

Yes. Just because you made a few educated guessed doesn't mean you can diagnose someone on the spot.

you can happily suggest that ASD may be considered, and yes, like knows like, so you can strongly suspect. But no, without the experience or proffessional objectivity, none of us can officially diagnose

Aspergers often presents very differently to high functioning ASD or low functioning ASD or regular run of the mill ASD. All of which are very different from each other.

I hate this whole low and high functioning shit. Yes some people are better at masking, that doesn't mean it's easy for us or that we're high functioning. I have what used to be termed aspergers but is now just autism, the amount of people who tell me it's not real autism because I cope os astounding. I don't cope I just hide it better in public is all.

@HerRoyalHappiness

Aspergers often presents very differently to high functioning ASD or low functioning ASD or regular run of the mill ASD. All of which are very different from each other.

I hate this whole low and high functioning shit. Yes some people are better at masking, that doesn't mean it's easy for us or that we're high functioning. I have what used to be termed aspergers but is now just autism, the amount of people who tell me it's not real autism because I cope os astounding. I don't cope I just hide it better in public is all.

I don’t like low and high functioning but when you have a child who has no verbal language, incontinent and smears, cannot be left alone for 5 minutes because they have no safety awareness, cannot undertake even the simplest of task like brushing their teeth or pass you a toy, there needs to be some signifier.

There is. Autism.

I also have autism.
Yes I'm typing on here but how do you know how my day to day functioning is? Like many others it's massively variable to the extent that sometimes I cannot speak.

Yes I work, yes I'm a parent. It's not straightforward to pigeon hole me into high functioning labels when I don't function at all.

FWIW my middle child was very like how you describe as a small child. He is gaining skills slowly and is very much delayed but they are starting to emerge. I don't know if he ever will be truly independent and he will need care for the rest of his life but the child you have isn't always how it will always be.

I don’t like low and high functioning but when you have a child who has no verbal language, incontinent and smears, cannot be left alone for 5 minutes because they have no safety awareness, cannot undertake even the simplest of task like brushing their teeth or pass you a toy, there needs to be some signifier.

Yes, this. DS is autistic, bright and capable. His autism means he needs clear instructions for new tasks and that he struggles to understand metaphor or put himself in others' shoes but he's doing well at school, had friends and I have no worries leaving him alone, I don't need to help him with basic care. I don't worry about who will look after him when I'm gone.

I think it would be a huge insult to mothers dealing with children with significant challenges like those described above, to pretend that both our children suffer the same thing and there is no difference, it's just that my DS "masks better". That's simply not true.

We need to be able to distinguish between those with autism who are competent enough to come on a forum and argue the toss about what language is used to describe them, and those who will never be able to do this.

The terms the hospital gave us were "high/low functioning". If there is an alternative term I'll use it, but trying to do away with a way to describe how severely autism affects an individual is unhelpful IMO.

That's simply not true.

You cannot possibly know how severely its affecting him internally because you are not him.

@HerRoyalHappiness

That's simply not true.

You cannot possibly know how severely its affecting him internally because you are not him.

Please, this is a nonsense. No, I don't know how my DS's ASD affects him internally, just as no one knows how my ADHD affects me internally.

But it's obvious that neither I nor my DS are so severely affected by our ND that we need carers, help with basic functions or will never live alone. Yet, that IS the case for many people with ASD. And they're not here arguing the toss about it as they can't.

IMO it's an insult to a mother caring for a child with severe autism to pretend her and her child's experiences are like mine and my child's. And we need a way to talk about this. If you have other language we can use, please feel free to suggest it, but please don't pretend such distinctions don't exist.

And they're not here arguing the toss about it as they can't.

Thats where you're wrong. I have a carer. I get pip for my autism. I'm severely affected where I can't handle basic tasks that others can. But here I am.

But I guess I shouldn't make armchair diagnosis because I'm not a professional.

By Jove! I think you've got it!

My adult cousins partner has recently been diagnosed with autism, the way my family spoke about it, how she would have to "decide what she wanted to do" as if she hadn't already been with him two years prior to his diagnosis! To them, it's like he suddenly caught autism when he was diagnosed. She would have been used to any of his traits before she knew they were down to autism! They weren't impressed when I said I hoped my beautiful kind hearted sons future in laws didn't think that way about him.

HRH, the amount of people who tell me it's not real autism because I cope os astounding. I don't cope I just hide it better in public is all

I think this needs to be more widely publicised when comments are passed about people not having 'real autism'

"The DSM-5 Manual defines autism spectrum disorder as “persistent difficulties with social communication and social interaction” and “restricted and repetitive patterns of behaviours, activities or interests” (this includes sensory behaviour), present since early childhood, to the extent that these “limit and impair everyday functioning”. "

Note this bit, it's what so many people don't realise, present since early childhood, to the extent that these “limit and impair everyday functioning