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Original poster

Autistic women assemble!

978 replies

Nepmarthiturn · 04/04/2023 10:36

...only if and when you're not feeling antisocial and want the entire world to +%$¥ off, or course. 😉😆

A few of us were talking on another thread and thought it would be nice to have a support/ chat thread on here to share interests/ challenges/ parenting issues or whatever we feel like. A little community of autistic women on here that we can dip in and out of but will be supportive and friendly and people who actually get it.

Might also be a nice counterbalance to all of the horrific posts about autism that we find here so regularly!!

P.S. Have deliberately posted this in chat rather than in the ND Mumsnetters topic because it will hopefully reach more people who would like to join in. I didn't even realise that section existed for a long time and often miss threads there as they don't show in active and expect I'm not alone in that. However, in posting this here, we will be relying on the people with obnoxious and ignorant views about autism who so regularly post on Mumsnet, to demonstrate to us their allegedly superior empathy (ha!) and please just leave this thread alone: it's not for you. Many thanks!!

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Furries · 03/08/2023 04:10

Nepmarthiturn · 03/08/2023 00:05

It's exhausting @TheShellBeach

I have found it a little easier though since I cracked their code, and started understanding their fake meaning in what they say, like the above translation.

Stupidly, when I was young, I used words to mean what they mean and assumed other people were doing likewise. It took me so long to realise this wasn't the case. (With my own children I'm making sure they know this from a young age! They find so many phrases and things confusing already because the don't actually make sense.).

It is exhausting when you have people reading imagined subtext into what you have said when you have literally used the words per their dictionary definition. And mean exactly what you actually said, no more, no less.

And the other person then makes up a meaning of your words which isn't what you said, with their imagined subtext that they project onto everyone else just because they do it.

And then replies to you but again in code expecting you to establish some meaning that isn't actually what they said at all.

I mean, FFS. Words exist for a reason! Why is it so hard to use the ones that actually say what you mean?!

I am amazed quite frequently that autistic people are the ones described as having communication difficulties. It seems to me that it is mainly an issue with NT people failing at comprehension and making up hidden messages that do not exist or expecting people to read their minds because they are seemingly incapable of using words that actually match what they are attempting to communicate. 🤦🏻‍♀️

Bloody hell, I think I love you 💕🤣.

You have perfectly summed up a huge frustration of mine. It is the main thing that REALLY pushes my buttons and makes my mask drop very quickly. The sheer frustration of someone feeding a situation back to you which bears NO resemblance to what you said.

Am glad to see the thread is up again. I hid from it as felt a bit awkward after my supermarket rant. Will try to catch up with other posts this week, but this one caught my eye!

TheShellBeach · 03/08/2023 08:34

Furries · 03/08/2023 04:10

Bloody hell, I think I love you 💕🤣.

You have perfectly summed up a huge frustration of mine. It is the main thing that REALLY pushes my buttons and makes my mask drop very quickly. The sheer frustration of someone feeding a situation back to you which bears NO resemblance to what you said.

Am glad to see the thread is up again. I hid from it as felt a bit awkward after my supermarket rant. Will try to catch up with other posts this week, but this one caught my eye!

Show quote history

The only thing that bothered me about this thread was that non- autistic man who decided he was entitled to post, very near the beginning.
We got rid of the entitled wanker, though.
Grin

TheShellBeach · 03/08/2023 08:36

I mean, how typical.
The thread title is a clear call to arms for autistic women, and a man who is NOT autistic figures he can just post anyway.

Original poster
Nepmarthiturn · 03/08/2023 10:48

Yes, that was an eeeerm.... interesting decision on his part! 🤣🤦🏻‍♀️

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Original poster
Nepmarthiturn · 03/08/2023 10:49

@Furries !

Good to see you back. 😊😊

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QuitChewingMyPlectrum · 03/08/2023 12:12

Nepmarthiturn · 02/08/2023 23:55

They probably really meant "how do I make them stop".

Yep. Absolutely. It's not really "how do I cope with this" i.e. how could we establish better communication and understand each other more and make the situation better for us both in future?

It's code for "how do I force this person to mask and hide their distress even more than they already do to make my life easier (zero fucks given about the impact that will have on their mental health or the extreme effort the are already making to meet me and the rest of the NT world they are forced to live in more than half way, I can't be arsed to do even a fraction of that)?

Perfectly put.

Original poster
Nepmarthiturn · 03/08/2023 14:16

How is the journey going @TheShellBeach ?

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QuitChewingMyPlectrum · 03/08/2023 16:54

How is everyone doing today. I did tennis and it actually made me feel better. I think it's a sensory thing. It was quite nice thwacking the ball about, and I feel like I've done mum stuff so I have permission from my brain to relax now.

KajsaKavat · 03/08/2023 17:16

Hi, 👋 late to the party as usual.

StopStartStop · 03/08/2023 17:29

Hello! Hope everyone is well.
I've managed to do a little admin work these last few days - just the 'sorting' part that I don't mind too much. It's big news for me because I've been to scared even to look at it for about erm... ten years. I don't know if I'll get as far as accomplishing anything, but I hope I will.

StopStartStop · 03/08/2023 17:30

Actually, it's nearer 20 years. I've been looking at documents dated 2004. And putting them ready for disposal.

Original poster
Nepmarthiturn · 03/08/2023 18:55

QuitChewingMyPlectrum · 03/08/2023 16:54

How is everyone doing today. I did tennis and it actually made me feel better. I think it's a sensory thing. It was quite nice thwacking the ball about, and I feel like I've done mum stuff so I have permission from my brain to relax now.

That's really good! I have got a fair bit done but still not even made a dent in my to-do list. It just seems impossible. 😕

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Original poster
Nepmarthiturn · 03/08/2023 18:56

KajsaKavat · 03/08/2023 17:16

Hi, 👋 late to the party as usual.

Hi @KajsaKavat ! 😊😊

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Original poster
Nepmarthiturn · 03/08/2023 18:57

StopStartStop · 03/08/2023 17:29

Hello! Hope everyone is well.
I've managed to do a little admin work these last few days - just the 'sorting' part that I don't mind too much. It's big news for me because I've been to scared even to look at it for about erm... ten years. I don't know if I'll get as far as accomplishing anything, but I hope I will.

Totally get this. I hate clutter and I'm drowning in mess and unfiled paperwork because there are literally not enough hours in the day and then I just cannot face it.

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Original poster
Nepmarthiturn · 03/08/2023 18:57

Well done for making a start though @StopStartStop ! That is the hardest part, I think.

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StopStartStop · 03/08/2023 19:24

thank you!

TheShellBeach · 03/08/2023 20:17

Nepmarthiturn · 03/08/2023 14:16

How is the journey going @TheShellBeach ?

Fine!
Dinner was fine, too.

It's all the pre-journey catastrophising that makes it difficult, as you know.

Anyway, I was thrilled to discover that the car we were test-driving has a dial for increasing or decreasing the volume of the music, which has actual numbers on it, so I will be able to see that it's definitely an EVEN number when I change it.
Our current car doesn't show numbers, and it's always freaked me out and made me uneasy.
After all, it might be on an ODD number and I'd never know!

Does anyone else have to have specific numbers on dials?

So I told DH that I loved the car and we definitely chose it.

TheShellBeach · 03/08/2023 20:20

My specific numbers on dials have to be even.
I can't cope if they're odd

QuitChewingMyPlectrum · 03/08/2023 22:35

TheShellBeach · 03/08/2023 20:20

My specific numbers on dials have to be even.
I can't cope if they're odd

Even numbers here too!

QuitChewingMyPlectrum · 04/08/2023 08:04

How is everyone. I'm feeling completely drained if I'm honest. We had a phone call from CAHMS yesterday saying that not only was my sons appointment with his consultant to talk about an ADHD diagnosis cancelled, but that they would prefer to see him do a term at high school before they make a decision.
I'm absolutely fuming. we are 20 months into the assessment process. The school provided evidence 20 months ago when they did not see any issues with him. Since then, I have had to push through mediation with the local authority and the school to assess him properly for his needs (he is autostic also) and put in place provisions to help him. These have massively improved his schoolwork, and his mental health. The woman at CAHMS said to me on the phone that maybe it will be easier to get school evidence if he starts to suffer at school and can no longer mask.
I'm absolutely incandescent at this. we were supposed to review his condition with the consultant two weeks ago, whereupon the appointment was cancelled last minute due to illness. I have no problem with somebody cancel an appointment because they are ill. However, to now decide that they don't want to see him until he starts.failing academically at school is absolutely unconsciable.
he has suffered badly with attendance, due to his needs not having been met at school previously. I don't know where to go with this.

TheShellBeach · 04/08/2023 10:03

@AuDHD4Me
Oh that's awful of them. How dare they put him through more distress like this.
I have no idea what you can do about it, though.
Perhaps someone will come along soon with some advice.

Original poster
Nepmarthiturn · 04/08/2023 12:12

That is appalling @AuDHD4Me .

These people all just want to pass the buck. I've been in a similar situation fighting for help for my kids between CAHMS, social services and the LA for a couple of years now. They will try to weasel out of doing anything useful whatsoever, and it's disgusting that they want to put a child through mental distress to "prove" to them that they need support. The whole point is to get support in place before that happens.

I know with ADHD it is difficult because the NHS won't accept private diagnoses and then you have to continually fund private prescriptions for the medication which is £££.

Is it an ECHP you are trying to get for school? If so, you can apply yourself if others are being obstructive. But even then apparently almost all applications are rejected and you have to take them to tribunal to actually get it put in place.

They tried this stunt with my children too: that they're not disruptive and mask and are meeting academic targets so apparently it's all fiiiiine. Ummm.... no. It's not. Because if a child is coming home in distress, they are not fine. And the school has a duty of care to the child and their wellbeing, not just to deal with disruption/ academic issues. And they have to follow the code of practice for schools which states they must listen to parents, and the Equality Act 2010 where they must make services like school accessible for those with protected characteristics.

If you have lots of evidence already I would start a formal complaint, with a covering letter and all of your evidence in appendices. I am not sure how the CAMHS complaints process works, I've given up on CAMHS entirely.

It's all such a shambles and so stressful when the services that are meant to help you in fact just make the situation worse and cause more stress and work for you. I'm so tired of fighting these people just to try to get them to do their jobs.

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Original poster
Nepmarthiturn · 04/08/2023 12:39

Also, evidence from school is only one small part of the assessment process for ADHD. There is literally no reason they can't progress with a medical diagnosis at his age through all the evidence gathered already and from you and by actually speaking to him himself, at his age!

Perhaps ask for a copy of their assessment criteria and for them to explain exactly which part in their opinion they have insufficient evidence to conclude on without even more evidence from school than they have already?

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QuitChewingMyPlectrum · 04/08/2023 12:50

This is it @Nepmarthiturn - it's exhausting.
We've already done mediation with the LA and school. I've put a formal complaint in this morning.

StopStartStop · 04/08/2023 13:04

The woman at CAHMS said to me on the phone that maybe it will be easier to get school evidence if he starts to suffer at school and can no longer mask.

That is very cruel. My dgd is the same age. CAMHS have been useless. My dd has dealt with them, not me, so I haven't all the details at my fingertips, but I know I've had to say 'Yes, I've heard from others that they're no help at all!' several times.