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)

We are different but not wrong

Exactly. Saying autistics, or autistic people, or people with autism have something wrong with them implies they have a disease or condition that needs treatment. And that's wrong!

I'd like to explain what it's like being autistic in the form of a story. It explains how we're not 'wrong' in the usual way that people mean. Please read it through, even if you get what I'm trying to say in the first paragraph or so.

A man goes into a pet shop to buy a dog. He sees a suitable one and the pet shop owner sells it to him, along with dog food, a bowl, a ball and a dog collar and lead. The man happily goes off home with his new friend. He's never had a pet before so doesn't know what to expect.

Over the next few days he reads up on what care a dog needs and how to behave around dogs. He notices that the dog isn't too relaxed around his home and seems ill at ease. It's also been peeing in the lounge, hiding and running up the curtains. He tries to get it to go outside for a walk, but the dog bites and scratches him when the man attempts this. The dog is obviously unhappy and distressed and the man is disappointed that having a dog isn't the fun activity he believed it would be.

The man invites his friend round to meet his new pet, but after a period of interaction with the pet the friend utters the words "hey man, there's something wrong with your dog".

The man cares about his pet so arranges for it to see the vet. The vet does a few tests and asks the man some questions and, after a while, says to the man, "this isn't a dog, it's a cat" Wtf!? The man is stunned and exclaims "so this is why it acts so weird?"

The vet explains that cats need different care from dogs and they don't behave like dogs, but that they can make good pets if you adjust your expectations and don't expect them to do dog things or respond in the way a dog would.

The man feels sad, but has grown fond of his pet so decides that he'll give it a go and keep the cat. He buys it some cat food, a soft collar instead of the rigid dog collar, a soft bed, a hiding box and kitty toys. Over the next few weeks the cat starts to feel more comfortable around the man's home. No more stressful walks in the busy park, a place to hide when things get too much or the man's friends visit, a soft bed to sleep in and some kitty toys to chase. The cat enjoys sitting quietly out in the warm sun in the garden and on the man's knee on an evening.

The man gets used to having a cat rather than a dog. It's different and not what he expected, but the cat is happy and they become firm friends.

Autistic people are 'wrong' if you treat us like a neurotypical and expect us to feel comfortable doing neurotypical things in a neurotypical environment.

@Pugroll

One of the reasons threads always end in arguments is because there isn't a universal experience, although some challenges and aspects are similar for many, everyone is of course different yet some seem determined to have their experience heard the loudest. The comment about parents of autistic children wading in the opposite is also true, there have been threads looking for support and people have commented how wrong they are or how horrible it is that they are asking; how about everyone respects others experiences and need for support?

absolutely

and in regards empathy - my son at 10 scored 98% in the 'recognising emotions from facial expressions' test that they may often give to adults. He actually is overwhelmed by the cognitive emathy he feels - he takles on and 'feels' their emotuions. With him its the adaptive empathy that is lacking - he doesnt know what the response to the emotion should be, unless specifically told, in which case he will respond in a way he THINKS that he ought to. Although he is often too overwhelmed by their emotion and feeling it himself that he is actually incapable of doing so.

The NT world would view this behaviour as 'making someone elses problem all about them' - they would judge him and say he was attention seeking, or he was being controlling by trying to make himself the important/centre of the situation. They would say it was controlling and abusive.

Tbf @NettleTea that's why there are support groups for those that ended up marrying people like your ds. One day your ds may pass as what one might expect from an NT person and to then get married and find out they will never receive the support they need because their dh is only able to think about themselves through no fault of their own is devastating. Possibly devastating for both the dh and the dw as well.

That's why we need to see that this spectrum is just that, so wide a variety of things arise from being autistic it's not really possible to simply say because I do this someone else will.

hopefully in the future there will be more support and understanding and education that helps resolve or at least improve the negative issues that can arise from autistic people living in an NT world for both parties.

@BessieFinknottle

I interpreted the post differently - that although the poster has autism it doesn't mean that there is anything wrong with them.

@amusedbush @AlfonsoTheGoat

But the DSM5 mentions 'deficits' and says that there has to be clinically significant 'impairment' in functioning to obtain a diagnosis...

So how can there be nothing wrong? Surely someone needs to be struggling to receive a diagnosis in the first place?

I don't mean to offend, but I don't understand this. There isn't anything wrong with someone of course, but there must be something wrong , ie some problems, to achieve a diagnosis. Or are we just arguing over semantics?

There isn’t anything ‘wrong’ with your kids but they might struggle in a world which is dominated and organised by neurotypical people and that would look like something was ‘wrong’ with them.

My son is autistic and has learning disabilities, we talk about his brain working differently from some other people, so things that he is good at other people might not be as vice versa. He went to special school, he may not live independently (because of his own vulnerability and risk from others) but there is nothing ‘wrong’ with him.

@flowerbubbles

Tbf *@NettleTea* that's why there are support groups for those that ended up marrying people like your ds. One day your ds may pass as what one might expect from an NT person and to then get married and find out they will never receive the support they need because their dh is only able to think about themselves through no fault of their own is devastating. Possibly devastating for both the dh and the dw as well.

That's why we need to see that this spectrum is just that, so wide a variety of things arise from being autistic it's not really possible to simply say because I do this someone else will.

hopefully in the future there will be more support and understanding and education that helps resolve or at least improve the negative issues that can arise from autistic people living in an NT world for both parties.

although my DS is the most caring and kind boy in the world too aside from his inability to be able to deal appropriately with someone elses distress. And his dad is the same. Kind, compassionate and does alot of stuff that would be seen as thoughful. Brilliant at buying presents for people and thinking about what they would like. Just possibly likely tyo be overwhelmed in times of high emotion. His dad has offered me more support than any other partner Ive had. But then Im autistic and so possibly our expectations and needs within a relationship are not the same as an NT partnership. Its mixed and situational.

@ineedsun That is a perfectly valid way of interpreting your DS's situation, and I'm definitely not saying that you're incorrect. But speaking as an adult myself who can't live independently, I personally do feel there's something (or a lot of things) wrong with me, causing that situation for me. I'm not saying I would insist there are things 'wrong' with other people who define their own situations / life circumstances differently, but ... I guess I'm just saying that there are multiple, equally valid, ways of interpreting these things.

@BarrowInFurnessRailwayStation

I'd like to explain what it's like being autistic in the form of a story. It explains how we're not 'wrong' in the usual way that people mean. Please read it through, even if you get what I'm trying to say in the first paragraph or so.

A man goes into a pet shop to buy a dog. He sees a suitable one and the pet shop owner sells it to him, along with dog food, a bowl, a ball and a dog collar and lead. The man happily goes off home with his new friend. He's never had a pet before so doesn't know what to expect.

Over the next few days he reads up on what care a dog needs and how to behave around dogs. He notices that the dog isn't too relaxed around his home and seems ill at ease. It's also been peeing in the lounge, hiding and running up the curtains. He tries to get it to go outside for a walk, but the dog bites and scratches him when the man attempts this. The dog is obviously unhappy and distressed and the man is disappointed that having a dog isn't the fun activity he believed it would be.

The man invites his friend round to meet his new pet, but after a period of interaction with the pet the friend utters the words "hey man, there's something wrong with your dog".

The man cares about his pet so arranges for it to see the vet. The vet does a few tests and asks the man some questions and, after a while, says to the man, "this isn't a dog, it's a cat" Wtf!? The man is stunned and exclaims "so this is why it acts so weird?"

The vet explains that cats need different care from dogs and they don't behave like dogs, but that they can make good pets if you adjust your expectations and don't expect them to do dog things or respond in the way a dog would.

The man feels sad, but has grown fond of his pet so decides that he'll give it a go and keep the cat. He buys it some cat food, a soft collar instead of the rigid dog collar, a soft bed, a hiding box and kitty toys. Over the next few weeks the cat starts to feel more comfortable around the man's home. No more stressful walks in the busy park, a place to hide when things get too much or the man's friends visit, a soft bed to sleep in and some kitty toys to chase. The cat enjoys sitting quietly out in the warm sun in the garden and on the man's knee on an evening.

The man gets used to having a cat rather than a dog. It's different and not what he expected, but the cat is happy and they become firm friends.

Autistic people are 'wrong' if you treat us like a neurotypical and expect us to feel comfortable doing neurotypical things in a neurotypical environment.

Excellent.

Except the cat still looks like a dog and barks like a dog.

Was it Einstein who said we don’t judge a fish on it’s ability to climb a tree?

@BlankTimes

We are different but not wrong

Exactly. Saying autistics, or autistic people, or people with autism have something wrong with them implies they have a disease or condition that needs treatment. And that's wrong!

Again though, autistic people sometimes - often or mostly I'd say - do need treatment. Some need speech and language therapy, occupational therapy, counselling, input from psychologists and psychiatrists etc. Some take medication to aid sleep.

I'm not trying to be confrontational and I don't like the use of the word wrong - it implies something other than what I'm trying to say. I just don't like the way the condition is presented by some as just a difference. And that if NTs bucked up and changed the world and behaved differently then everything would be fine. In some cases maybe it would. But in many cases it wouldn't, though it would help. Some people are profoundly autistic. Some have difficulties that have very little to do with how others behave towards them.

I don't really like the dog/ cat analogy either, sorry. My DS has problems that go way beyond this. We love him, adore him, accept him as he is, have adapted the environment to suit his needs but he still struggles enormously.

@BessieFinknottle

Likewise you need to realise that not all autistics are like your child. The vast majority don't have high care needs. However, we do struggle in many other ways and are not accepted by society.

We need to move past this 'high functioning' vs 'low functioning' narrative. Amongst wider autistic communities it's just not tolerated anymore and it's seen as ableist.

[quote BarrowInFurnessRailwayStation]@BessieFinknottle

Likewise you need to realise that not all autistics are like your child. The vast majority don't have high care needs. However, we do struggle in many other ways and are not accepted by society.[/quote]
I know that not everyone's the same. That's why I was careful to use the word 'some' in my post upthread.

My DS doesn't have profound autism as it happens. He is intellectually very bright but has to cope with dyslexia, dyspraxia and many sensosry issues. What has devestated his life is severe anxiety and other mental health difficulties. Many of his MH problems can be traced back to differences/rigidity of thought, which is part of his autism.

Sorry for the typos!

@BarrowInFurnessRailwayStation

I'd like to explain what it's like being autistic in the form of a story. It explains how we're not 'wrong' in the usual way that people mean. Please read it through, even if you get what I'm trying to say in the first paragraph or so.

A man goes into a pet shop to buy a dog. He sees a suitable one and the pet shop owner sells it to him, along with dog food, a bowl, a ball and a dog collar and lead. The man happily goes off home with his new friend. He's never had a pet before so doesn't know what to expect.

Over the next few days he reads up on what care a dog needs and how to behave around dogs. He notices that the dog isn't too relaxed around his home and seems ill at ease. It's also been peeing in the lounge, hiding and running up the curtains. He tries to get it to go outside for a walk, but the dog bites and scratches him when the man attempts this. The dog is obviously unhappy and distressed and the man is disappointed that having a dog isn't the fun activity he believed it would be.

The man invites his friend round to meet his new pet, but after a period of interaction with the pet the friend utters the words "hey man, there's something wrong with your dog".

The man cares about his pet so arranges for it to see the vet. The vet does a few tests and asks the man some questions and, after a while, says to the man, "this isn't a dog, it's a cat" Wtf!? The man is stunned and exclaims "so this is why it acts so weird?"

The vet explains that cats need different care from dogs and they don't behave like dogs, but that they can make good pets if you adjust your expectations and don't expect them to do dog things or respond in the way a dog would.

The man feels sad, but has grown fond of his pet so decides that he'll give it a go and keep the cat. He buys it some cat food, a soft collar instead of the rigid dog collar, a soft bed, a hiding box and kitty toys. Over the next few weeks the cat starts to feel more comfortable around the man's home. No more stressful walks in the busy park, a place to hide when things get too much or the man's friends visit, a soft bed to sleep in and some kitty toys to chase. The cat enjoys sitting quietly out in the warm sun in the garden and on the man's knee on an evening.

The man gets used to having a cat rather than a dog. It's different and not what he expected, but the cat is happy and they become firm friends.

Autistic people are 'wrong' if you treat us like a neurotypical and expect us to feel comfortable doing neurotypical things in a neurotypical environment.

I don't think this makes the point you think it does!

Could not agree more OP. MNHQ seem to be suffering from selective deafness where those “support for spouses” threads are concerned.

@BarrowInFurnessRailwayStation

We need to move past this 'high functioning' vs 'low functioning' narrative. Amongst wider autistic communities it's just not tolerated anymore and it's seen as ableist.

Sadly, the gene sequencing moment is coming and that will reinforce the divide (often seem on MN) between those who view ASCs as a defect that should be bred out and those who see it as a valid neurodivergence to be valued.

It’s often the parents of “low functioning” autists who are very vocal about viewing it negatively, whilst mostly HF autists feel much more positively about it (generalisation but normally the case).

So when the fight over antenatal screening for autism starts, the division will inevitably be reinforced.

@BlankTimes

We are different but not wrong

Exactly. Saying autistics, or autistic people, or people with autism have something wrong with them implies they have a disease or condition that needs treatment. And that's wrong!

My son was diagnosed last year and it labelled him Autistic Spectrum Condition and had a note to say this has changed from Autistic Spectrum Disorder.

In my mind both aren't right.

Sadly, the gene sequencing moment is coming

I'm not sure about that. I'd say the genetic background is very complicated and different for different people. Also some environmental effects or 'nuture' may be involved in some cases - by this I mostly mean womb environment or difficulties at birth.

I wish I could get someone to take my £10,000 bet that environment (in utero or otherwise) has FA to do with it. I fully accept it will probably turn out to be a complicated interaction of several genes, but the “environment” business is tosh. More “refrigerator mother” women-boning hocus pocus.

I’m quite happy to wait a few years to be proved right, though. We need the time to work on the PR campaign to oppose ante natal testing.

Erm. That was “women-blaming” before my misogynistic autocorrect went to work.

If they get rid of us they can kiss goodbye to any further scientific, medical or technological advances. Sure, some work may get done, but the big stuff will grind to a halt. There are reasons why Silicone Valley (and others) love autistic employees.

@BarrowInFurnessRailwayStation

If they get rid of us they can kiss goodbye to any further scientific, medical or technological advances. Sure, some work may get done, but the big stuff will grind to a halt. There are reasons why Silicone Valley (and others) love autistic employees.

Yes that’s the backbone of my campaign. Care to come on board?

@BarrowInFurnessRailwayStation

Message deleted by MNHQ. Here's a link to our Talk guidelines.

Nope, but what it's saying is that the person who buys the dog that's actually a cat is the one to make all of the compromises because the dog/cat can't. Fair enough, but that's more or less what the threads you're complaining about are full of people saying and why they are struggling .

I take it you're not a scientist @Thoosa .There's lots of evidence that conditions in utero do play a role. Maybe do a bit of research on the topic before you give your money away
Absolutely nothing at all to do with refrigerator mothers or blaming women though. Don't know where you getting that from.