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)

@HerRoyalHappiness

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.

I would never be so arrogant as to judge someone based on a good day or a bad day or by what they post on here. I am simply stating there are some children and adults who have never and will never manage any or most basic of tasks and need 24 hour care. There are people who cannot function at all. My child could not turn on a computer, let alone type a message. I have a friend who has a child also with an ASC. Her daughter is verbal, attends a mainstream school and can care for herself but she has extreme mental health needs associated with her ASC. Her experience is different to my child’s experience. Hers isn’t easier or harder. The care and support they need is totally different and I would never compare. Autism is not autism. My child and her child will both need care if they have no parental support but it’s not the same care. Her child would be distressed at having support with personal care and personal hygiene. She is extremely private. Mine would not even be aware of the need to wash or brush his teeth. It does not matter who helps him change his pad, as long as it is changed.

My child is incredible and I love him but he faces immense challenges and he is not disabled by society. Yes, it would be wonderful if society accepted him. I hate being stared at and judged but he’ll still be disabled by his own lack of abilities. He is a very disabled child, still a child too, of course. I think he’s awesome and he makes me whole but it’s not the life I would have chosen for him.

@Caramellatteplease

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.

I really agree with this. (As a person with significant autistic traits currently awaiting official diagnosis)

@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.

Ah yes masking is the extent some have it. There should be some sort of differentiation, what terminology would you like?

I am simply stating there are some children and adults who have never and will never manage any or most basic of tasks and need 24 hour care

Should differentiation be based on care and support needs?
24/7 1 to 1 or sometimes 2 to 1 care is much different to needing a PA and/or housekeeper but there's a vast chasm of needs in between those two extremes and variation of needs also requires consideration.

Do consider though that many care needs are not necessarily directly due to autism, but are due to co-morbids. Autism can be the primary diagnosis, but it's very rare that it's the only diagnosis. Also needs can vary an awful lot, not just as a child grows, but with an adult's level of coping ability on any particular day.

I don't think there's any easy way of identifying terms for support for everyone with autism.

I don't think there's any easy way of identifying terms for support for everyone with autism.

Exactly this. My care needs cary day to day but even on so called good days I need reminding to brush my teeth, wash, do my hair, to eat, to stop eating, to take my meds, to drink enough water.

To call me high functioning because I'm a mother of three and live with just me and my children would be wrong.

@HerRoyalHappiness

I don't think there's any easy way of identifying terms for support for everyone with autism.

Exactly this. My care needs cary day to day but even on so called good days I need reminding to brush my teeth, wash, do my hair, to eat, to stop eating, to take my meds, to drink enough water.

To call me high functioning because I'm a mother of three and live with just me and my children would be wrong.

But why are you so caught up on the label? You are higher functioning than someone who requires 24 hour care and will never live an independent life. It doesn't suggest it's easy or that you don't face challenges and it's not a competition, but as its impossible to have terms that accurately encompass everyone, there is an absolute world between the 2 ends and that can be important to acknowledge 'officially'.

Because im not high functioning at all. I may have a different life to someone else but I'm not high functioning. I just mask better to fit in with a society that refuses to accept autistic people as we are.

There’s a difference between:

A) A thread to help NT people trying to figure out how best to navigate a relationship with an ND partner. (See double empathy idea).

B) A thread for people to say ‘My DH is an arsehole - must be autistic’.

Former’s fine. Good even. Second is not.

@HerRoyalHappiness

Because im not high functioning at all. I may have a different life to someone else but I'm not high functioning. I just mask better to fit in with a society that refuses to accept autistic people as we are.

I wouldn’t say you are high functioning but it’s not my place to say that. I wouldn’t pass judgement or comment. The fact of the matter is though, as a general rule, there’s always going to be someone lower functioning that you as well as higher functioning. It’s not a value judgement or you nor your abilities. Humans are unique.

@HerRoyalHappiness

Because im not high functioning at all. I may have a different life to someone else but I'm not high functioning. I just mask better to fit in with a society that refuses to accept autistic people as we are.

Your latter sentence is relevant to you but not all people with an ASC. My child cannot and does not mask. I am aware people present differently hence why one cannot make sweeping statements.

Society may accept him one day but it won’t make him less disabled or more likely to be able to attend to his basic needs. If only!

I don't think 'functioning' labels should be applied to people who object to them, but I also think people who object to them don't have the right to say others can't use them - as for some, they are useful and helpful (not only for ASC but other types of neurodiversity, and various disabilities).

Your latter sentence is relevant to you but not all people with an ASC
I know that. Which is another reason I hate the labels. Every single autistic person is individual and has their own personal needs. Labelling some as high functioning or low functioning encourages stereotypes and stigma around being autistic that shouldn't exist.
If we want society to accept autistic people then we must make them realise that it doesn't matter how we present to the world, we still are individuals.

the-art-of-autism.com/understanding-the-spectrum-a-comic-strip-explanation/ this is what the autism spectrum is. Its not high to low, autistic to neurotypical. Its individual to each and every person with autism.
The word autism or autistic encompasses everything. We don't need other qualifiers as we should be treated as individual, not as a subset if high or low functioning people.

@HerRoyalHappiness

I don't think there's any easy way of identifying terms for support for everyone with autism.

Exactly this. My care needs cary day to day but even on so called good days I need reminding to brush my teeth, wash, do my hair, to eat, to stop eating, to take my meds, to drink enough water.

To call me high functioning because I'm a mother of three and live with just me and my children would be wrong.

@HerRoyalHappiness I know we 'know' each other from another thread. I just want to say that i get you and understand you. Sending much love to you. This thread has been a difficult read, but there have also been some enlightening posts.

In a nutshell, i guess that's how life generally pans out for us day to day who have physical and non neuro typical issues. It is so hard to deal with life in general, and even more upsetting on a daily basis to battle the stereotype.

It's like applying for PIP. But every single day. Exhausting.

I will say that being married to someone who's autistic has its own challenges, especially from those who are old enough to never have been formally diagnosed, my DH has autism (his behaviour is identical to my autistic grandson ) I don't think the second thread is ageist but more for emotional support .

This comments on the misinformation that functioning labels can give, as well as looking at some myths around the spectrum.

neuroclastic.com/its-a-spectrum-doesnt-mean-what-you-think/

There is profound autism, it is different in needs and support to other people who have autism, so much so that there is clear need for the dsm to be changed. It was recently covered in the Lancet. Unfortunately those diagnosed or self diagnosed with autism who are able to communicate verbally, by social media (inc mumsnet) or other means have the loudest voice as those who can't rely on their advocates (usually parents) who are then cast aside as not having autism so not being "actually autistic" and therefore do not have credible lives In experience. Those with autism able to communicate do not have the skills (due to their dx/disability) to place themselves in the position of those who cannot communicate. They have not experienced their lives, being non verbal, non communicative, so over run by their disability....

The term profound autism may not fit with the ideology of those who view autism as a level dx but it is starting to be acknowledged, the difference in need and severity is starting to be acknowledged.

www.google.com/amp/s/www.psychologytoday.com/gb/blog/inspectrum/202112/lancet-commission-calls-new-category-profound-autism%3famp

www.spectrumnews.org/news/first-of-its-kind-commission-defines-profound-autism-issues-recommendations/

autismspectrumnews.org/profound-autism-is-the-term-we-need-to-provide-critical-specificity-to-a-broad-spectrum/

www.google.com/amp/s/www.psychologytoday.com/gb/blog/my-life-aspergers/202112/reflections-profound-autism%3famp

Google profound autism it'll show the call for the term to be used. Also look at the national council for severe autism.

I am autistic and avoid that second thread as it is so upsetting to me as the autistic partner of someone neurotypical. As much as I understand all relationships have their challenges and we all need someone to talk to, that thread is offensive and ableist. It never endingly focuses on the challenges in the relationships, many of which aren't necessarily down to someone's neurotype. There are many other issues with it and the conversations on it however I am watching films with my gorgeous neurodivergent family who love me for who I am, just as I love them for who they are.

So, Just.... without eber having met me you know my verbal.skills just because I can write? My son is minimally verbal and also has severe learning disabilities which also present challenges every day yet hr is able to read and type (he can't use a pen). He's at a special school for moderate to severe difficulties yet he can write beautiful stories.

If anything I communicate far better in writing than I ever can verbally. I have friends who are also autistic who write for their day job yet fave executive functioning issues every single day.

You don't get a diagnosis for just being a bit of a geek.

@HerRoyalHappiness

Because im not high functioning at all. I may have a different life to someone else but I'm not high functioning. I just mask better to fit in with a society that refuses to accept autistic people as we are.

I always say that I am not disabled by my condition but by society's attitude toward my condition.

I don't agree the second thread is an issue. I have adhd, not autism, and it wouldn't offend me in the slightest if there was a similar thread about relationships with people with adhd. Dp and both dc are nt, and I think they or any other nt person are perfectly entitled to discuss their own lived experiences.

What does fuck me right off are the posts where people give themselves an armchair dx of adhd because they have a bad memory, dx their dh on the basis he's a bit of a cunt, or dx dc because they're badly behaved. Same, although less personal when people dx autism on equally ridiculous stereotypes. That is fucking offensive, but understandably harder to tackle, unless you want to treat everyone currently awaiting dx as being a fake until proven otherwise. The married to thread just seems like an easy target.

I always say that I am not disabled by my condition but by society's attitude toward my condition.
I like that. If society was more accepting and accessible to everyone with disabilities the world would be a much better place.

It's wild that you've openly said there's something wrong with people with bpd or depression. I didn't choose to have bpd anymore than you chose to have autism but apparently I shouldn't be afforded the same level of respect as a human being? People with OCD are different though right? In your mind that doesn't count as something "wrong".

@SlashBeef

It's wild that you've openly said there's something wrong with people with bpd or depression. I didn't choose to have bpd anymore than you chose to have autism but apparently I shouldn't be afforded the same level of respect as a human being? People with OCD are different though right? In your mind that doesn't count as something "wrong".

Yeah I don’t get this either. We should respect people as humans and not blame them for things they were born with, the fact is normal society is difficult for many people. Disabilities, personality disorders, plain old differences. And I think people should be able to speak freely on the difficulties they face as a person with them, parent or partner to someone.

@HerRoyalHappiness

I always say that I am not disabled by my condition but by society's attitude toward my condition. I like that. If society was more accepting and accessible to everyone with disabilities the world would be a much better place.

If I might ask, what would be the best changes society could make to make your life better? I feel like the world is not set up for a lot of people with depression, anxiety, some characteristics of introverted/extroverted people etc.