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Autistic women assemble! #3

996 replies

Nepmarthiturn · 06/01/2024 18:58

This is a thread for autistic women to connect, chat, vent, laugh, share and seek advice and solidarity (small talk and word mincing not required). 😊

Any autistic women newly finding the thread are very welcome to join us (even if awaiting diagnosis) but we'd be grateful if others could leave us alone please…

Previous threads:

1

http://www.mumsnet.com/Talk/_chat/4777843-autistic-women-assemble

#2
http://www.mumsnet.com/Talk/_chat/4865805-autistic-women-assemble-2

OP posts:
Thread gallery
31
TheShellBeach · 19/01/2024 16:34

@RainbowZebraWarrior how are things with your DD? Any better, or are you still banging your head against a brick wall?

RainbowZebraWarrior · 19/01/2024 17:13

TheShellBeach · 19/01/2024 16:34

@RainbowZebraWarrior how are things with your DD? Any better, or are you still banging your head against a brick wall?

I had a semi successful meeting with school and a very good meeting with CAMHS. However, we have been asking if they can change DDs to a different class for seven months and still haven't had a reply. CAHMS said to tell them that they should just do it, even if the other class is full cos 'exceptional circumstances' so I have. We will see.

Something I was incredibly shocked and disappointed at, though was that we were exploring some possible psychotherapy. All good, yes please. Then the SENCO from the school said "I'm just wondering, because your DD is from a broken family, I'm thinking maybe her anxiety is linked to that?"

WTAF!!? Broken family?! I did put pull her on her language and say my DD wasn't from a broken family.

Also, she said "Do you think the reason your DD won't wear a coat is because she's constantly being ferried to different medical appointments?" Err, no. It's because she's Autistic and it's a sensory thing / control thing / forgetful / lack of awareness thing.

FML.

TheShellBeach · 19/01/2024 17:28

DS still won't wear a coat, even though we're in Argyll and it rains all the time.

And one of my DDs always wore her coat inside the house, instead of putting the heating on.

TheShellBeach · 19/01/2024 17:32

But I hate the way that some NT people refuse to take our sensory likes and dislikes into consideration.

They also frequently refuse to take our anxiety on board. Or they decide why we're anxious for us.

Maddening.

RainbowZebraWarrior · 19/01/2024 17:35

TheShellBeach · 19/01/2024 17:32

But I hate the way that some NT people refuse to take our sensory likes and dislikes into consideration.

They also frequently refuse to take our anxiety on board. Or they decide why we're anxious for us.

Maddening.

This is the thing. It's a known issue among a lot of Neurodivergent kids and adults (the coat thing) I think I'll look up something from the Autism UK website and send a screenshot. They know fuck all about Autistic kids in most mainstream schools, and my god does it show!

Nepmarthiturn · 22/01/2024 14:21

Thanks for thinking of me @RainbowZebraWarrior . I've been struggling. I was just getting kver that virus I had 6 weeks ago and now have another cold so my ME is terrible. Still trying to find a new nanny so no morning childcare atm. Work is crazy busy and me and the kids are all finding being back at work/ school totally exhausting. Such an adjustment after the lovely break over Christmas. Life just feels like an endless list of tasks I can never complete. 🫠

OP posts:
Nepmarthiturn · 22/01/2024 14:23

TheShellBeach · 19/01/2024 17:32

But I hate the way that some NT people refuse to take our sensory likes and dislikes into consideration.

They also frequently refuse to take our anxiety on board. Or they decide why we're anxious for us.

Maddening.

Absolutely this! ⬆️⬆️

It's crazy they say we are the ones lacking empathy.

My son is just the same @RainbowZebraWarrior , he hates wearing coats/ jumpers. He'd be wearing shorts all winter if I let him. Even as a baby he used to pull his hat off his head and throw it out of the pram. My daughter's nemesis is socks.

OP posts:
Nepmarthiturn · 22/01/2024 14:25

As for "broken family".... WTAF?!?!

Unbelievable.

Tbh I think I would make a formal complaint about that. What an absurd comment, so prejudiced, and from a SENCO of all people, not grasping that autistic kids are anxious? I mean this is basic stuff you'd expect her to grasp if she'd even had a one day training course??

OP posts:
LoveSandbanks · 22/01/2024 14:28

I hate this trope that autistic people have no empathy. I have loads, one of my boys has buckets of it, the other doesn’t understand what it is and why it would possibly be useful - even on an intellectual level.

I think we sometimes demonstrate empathy differently to NTs but you’d think with their superior social skills and they’re fecking eye contact they’d be able to understand that.

sorry a bit grumpy and venty today.

Nepmarthiturn · 22/01/2024 14:40

Same in this household @LoveSandbanks

What really wrankles is it is not just a damaging prejudice, it has been disproven. Research demonstrated clearly that autistic people have more empathy on average than NT people. And yet these idiots won't stop trotting it out. It's just that autistic people often demonstrate their empathy in a different way to NT people and certain NT people can't conprehend that because... they lack empathy. Ironic, but irritating nonetheless. It does however, serve a useful purpose in that the moment somebody cites lack of empathy as an indicator or autism or whatever you immediately know for certain that they have no clue what they are talking about and are just one of those who like to share their "opinions" on topics they are entirely ignorant about: a silver lining of sorts.

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Nepmarthiturn · 22/01/2024 14:43

I mean, a large proportion of the anxiety generally comes from the enormous empathy overload! I guess it never occurs to those kinds of people to even consider why autistic people might be so anxious. Perhaps they're not so good at "putting themselves in someone else's shoes"... 😆

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Nepmarthiturn · 22/01/2024 14:46

No idea why I spelled "rankles" with a "w". 🤯🤣😆😒

I honestly think my brain has melted and leaked out. Sleep has been awful for ages due to not enough hours in the day but last night was particularly bad: 1.5 hrs.

I want to go on holiday and lie on a beach in the sunshine.

OP posts:
Eigen · 22/01/2024 14:52

Hello everyone, I’m waiting for my diagnosis assessment day and I wonder if anyone can help with a question I have.

My partner is filling out the informant’s questionnaire. I don’t really want to involve my parents at the moment for a number of reasons, and a lot of the developmental questions are quite factual so I can give answers to some of these. Ultimately my development was normal and I did well at school, hence a late diagnosis…

But I saw something somewhere which seemed to imply that without parental informants the diagnostic criteria doesn’t allow for a diagnosis. That can’t be true, can it? It would mean that orphans could never be diagnosed which is insane.

Did anyone else manage to get a diagnosis as an adult without parental informants?

LoveSandbanks · 22/01/2024 15:02

@Nepmarthiturn its like pain threshold. We often have an “atypical” response to pain either overrespond or under respond. It strikes me that those lacking empathy must be the NTs otherwise they wouldn’t keep forcing us to conform 🤣

RainbowZebraWarrior · 22/01/2024 15:02

Hi @Eigen I think the reason that so much is placed on a parents input, is because Autistic traits really do need to be traced back to birth / toddler years.

My mother was initially reticent, but then decided to help. However, if already filled in the gaps if you like because I knew anecdotally that I was picky with food from a young age, painfully shy, puked back bottles of milk and didn't sleep well.

I think, all in all, if you can demonstrate some sort of knowledge from your own childhood, this helps hugely. I'd write a note to go with the paperwork just to say you aren't able to provide anything from a parental pov. I'm sure it doesn't preclude you from diagnosis, as you say, how do people fare who's parents have passed away. It can all be discussed further during the actual assessment.

I also wrote some accompanying notes around milestones. Things like catching a ball - can't remember when I learned, but know I was rubbish. Ditto rubbish at all sport, riding a bike and learning to swim.

If you can, try and provide as much evidence as possible on the things you find you struggle with the most. List them on a separate bit of paper under headings: Social, Communication and Sensory. I feel pretty sure with the amount of examples I gave, I'd have been diagnosed anyway, without my mother's limited input.

Nepmarthiturn · 22/01/2024 15:58

@Eigen my parents had no involvement in my diagnosis and I have no school reports or other documents etc from that period. They need to establish that the condition has been lifelong, but that doesn't necessarily require parental involvement. They asked a lot of questions about my memories of being a child and that is sufficient. Otherwise, for example, they'd be saying nobody could get diagnosed if their parents had died! Try not to worry; they'll be used to working around this for various reasons.

OP posts:
Nepmarthiturn · 22/01/2024 16:01

My autism consultant also told me parental involvement in diagnosis of adults can be unhelpful because many of them have (intentionally or not) rewritten their version of history and don't want a diagnosis to be given because then they will feel they should have got help for their child, so their "recollections" can be very biased.

OP posts:
ThreeBeanChilli · 22/01/2024 16:48

I need to fill in my autism questionairre the doctor gave me.

They gave it to me a year ago and now my doctor has changed (!) I need to sit down and do the work though. I dont know whether just to hand into the doctor with a letter or if I need an appointment.

I once saw the questions rewritten from an autistic perspective - has anyone seen that? I completely thought I wasnt autistic for ages as I completely misunderstood the questions.

A colleague talked me through a few once but it was ages ago I've forgetton

A bit like

Q - do you like small talk?
Me - yes I love small talk - I enjoy finding out about people
Friend - Three bean you DO NOT love small talk. You go nuts if people are talking about reality TV etc for ages. YOU like asking people small talk as a way to leading questions to Find Out Everything About Them or to Find Out Interesting Way in... Also you're a group leader so you are in control of the small talk...

Q - I find social situations easy?
Me - I'm okay socially aren't I?
Friend - yes but you only put yourself in situations which you are okay - ie running groups you are in charge - meeting select people 1-1 for coffee. Would you go to a noisy pub? How would you find a disco? A wedding? Meeting random strangers?...

You get the picture...

Barbarachicken · 22/01/2024 16:58

Hi @Eigen I didn't have parental involvement for mine - for a woman in their 40s it seems slightly ridiculous? My assessor did require information from my husband. As long as you can recount childhood experiences that should be fine. There will be plenty of late diagnosed adults who are no contact with their parents or parents are deceased etc so I wouldn't worry. Best of luck with your assessment!

TheShellBeach · 22/01/2024 17:34

@Eigen I was diagnosed in my 60s and my parents are long-dead.

Don't worry.

TheShellBeach · 22/01/2024 17:36

@ThreeBeanChilli I can only do small talk on subjects which interest me. Otherwise, I'm lost.

ThreeBeanChilli · 22/01/2024 17:56

Yup @TheShellBeach me too. I just control the talk and then leas onto My Interests and didn't realise I did it 😂

QuickFetchTheCoffee · 22/01/2024 18:02

If only I wasn't empathetic enough for my DD to be sad and it bring my whole world crashing down. That would be nice. Maybe I'll give this autism malarkey a go and I'll feel better 😂😥

Ssamjang · 22/01/2024 18:37

Hello, can I join? I just had my assessment today with Problem Shared through right to choose. They've confirmed that I am autistic which wasn't exactly a surprise but somehow feels like a shock now. I have to wait 4-6 weeks for the report and in the meantime they suggested I look into subtle/female presentation of autism, monotropism and masking.

I feel simultaneously shell-shocked and relieved really, even though it doesn't actually change anything. How did you feel? And are there any recommendations for books to read about autism in adults?

JewelleryCat · 22/01/2024 18:43

Of course you can join @Ssamjang and welcome. I was the same, even though I knew it was coming, when I officially got the diagnosis, I was in shock

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