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Autistic women assemble! #4

408 replies

RainbowZebraWarrior · 18/07/2024 20:35

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:

Thread 3:

https://www.mumsnet.com/talk/_chat/4979068-autistic-women-assemble-3?reply=136877684

Thread 2:

www.mumsnet.com/talk/_chat/4865805-autistic-women-assemble-2

Thread 1:

https://www.mumsnet.com/talk/_chat/4777843-autistic-women-assemble

Page 40 | Autistic women assemble! #3 | Mumsnet

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). 😊...

https://www.mumsnet.com/talk/_chat/4979068-autistic-women-assemble-3?reply=136877684

OP posts:
Thread gallery
12
OneFineDay13 · 07/03/2025 07:01

Joining thread as a newbie going through a lot just now

JewelleryCat · 08/03/2025 11:39

OneFineDay13 · 07/03/2025 07:01

Joining thread as a newbie going through a lot just now

Welcome 🙂

Nepmarthiturn · 14/04/2025 03:09

InMySpareTime · 25/02/2025 12:12

Had my ADHD assessment today, which was a bit disappointing. Assessor said she can't proceed with a diagnosis until someone reports on my behaviour/symptoms as a child. DMum can't remember me as a child, I was just the "good" one that wasn't any bother, and she's lost all my school reports. I didn't really have any close friends and haven't kept in touch with anyone that knew me before I went to university.
I've asked my sister but she can't remember much of our childhoods either.
Would be annoying to miss out on a formal diagnosis because my (undiagnosed but probably ND) family weren't paying me any attention in the 1980s.

Very late to post this, but my ADHD diagnosis was done by an NHS psychiatrist and I have nothing from my childhood. Not school reports, no parent who would provide evidence, only a single photo of me as a child, one. That’s it. And it was not a barrier to diagnosis.

I hope by now you’ve got this sorted but if not, complain, and ask to see someone else. Of course it’s easier for the doctor if they have evidence from childhood other than your own recollections, but it is not a pre-requisite.

Nepmarthiturn · 14/04/2025 03:10

Hello also to everyone else. Sorry for being AWOL for so long, again…

EHCP processes for my children are destroying me.

I hope everyone’s ok?

Nepmarthiturn · 14/04/2025 03:11

OneFineDay13 · 07/03/2025 07:01

Joining thread as a newbie going through a lot just now

Welcome and nice to “meet” you! 😊

Nepmarthiturn · 14/04/2025 03:17

Also if @InMySpareTime you happen to have cracked the time travel, I have an 8 year old Back to the Future fan who would be massively interested in how you did it.

The NHS don’t ask much, do they?? 🤦🏻‍♀️

Errolwasahero · 16/04/2025 21:16

Hi all, found this thread looking for some advice please? I’m not diagnosed nor seeking a diagnosis. I have no way of funding it privately nor wish to wait years; also have no access to childhood information apart from my own memory.

I have been diagnosed with ME/CFS; it best fits my symptoms… except, this week I have been experiencing what I realised might actually be autistic burnout. And if I look at all my (life-long) symptoms from that perspective it seems to make a lot more sense.

please can anyone suggest how best to research this? Share experience? Any advice? Thanks

Nepmarthiturn · 19/04/2025 12:10

Errolwasahero · 16/04/2025 21:16

Hi all, found this thread looking for some advice please? I’m not diagnosed nor seeking a diagnosis. I have no way of funding it privately nor wish to wait years; also have no access to childhood information apart from my own memory.

I have been diagnosed with ME/CFS; it best fits my symptoms… except, this week I have been experiencing what I realised might actually be autistic burnout. And if I look at all my (life-long) symptoms from that perspective it seems to make a lot more sense.

please can anyone suggest how best to research this? Share experience? Any advice? Thanks

Hi Errol, and welcome! It’s extremely common for women to be diagnosed with anxiety, depression or CFS and later find out their autistic. These conditions are also genuinely more prevalent in autistic women because of the impact of stress and masking so can be a side effect caused by autism.

i have had CFS for 15 years now. It is generally triggered by a virus caused immune system malfunction and inflammation in the body, but usually following a prolonged period of stress or a huge shock or accident (or autistic burnout from sustaining years upon years of masking) and the huge effect this has on your body physically as well as on your brain mentally, making you vulnerable to these types of auto-immune conditions being triggered.

Sadly CFS is massively under-researched (10% of the research budget despite 10 times the number of sufferers of MS, for example) and for decades sufferers in the UK were told it was a mental illness 🙄 this has thoroughly been debunked but you’ll still find some very ignorant doctors unfortunately who have not updated their understanding in line with medical research. More research is going on now including a large genome study. Strangely, once many doctors suddenly came down with it after Covid (there is always a surge of it after a novel virus in a population: this happened with SARS, MERS and Ebola as well in other countries) now they are more prepared to stop gaslighting people pretending it’s a mental health problem. 🫠😒😏

What triggered your suspected CFS? You may well have both conditions. Or undiagnosed autism may have been a contributory factor to causing the CFS. Do you have a CFS clinic with actual specialists in the condition in your area?

Nepmarthiturn · 19/04/2025 12:15

Sorry, not suspected! I can see it’s been diagnosed from your post. I just meant that sometimes a GP (if not a CFS specialist) will diagnose CFS if they don’t know what else has caused the condition. There have been cases where people are later found to be suffering from Addisons or thyroid issues (that the NHS don’t test properly for) or other health problems and incorrectly diagnosed with CFS. Or indeed is being autistic burnout from a lifetime of masking and undiagnosed autism. Or, indeed, both because the masking and burnout has gone on so long it has triggered CFS.

InMySpareTime · 19/04/2025 12:40

I also have a diagnosis of ME/CFS followed by an Autism diagnosis, hoping I can at least reduce fatigue symptoms by learning and avoiding burnout triggers.

MightyGoldBear · 19/04/2025 13:33

Hello I'd like to join. I'm awaiting assessment focusing on getting my child assessed and supported first. Certainly from the school side of things it seems like there is no support. Im finding it very tough.

I've had years ago (i think ill informed )therapists say to me that I'm definitely not autistic. So I've gone through life so frustrated with myself. Why can't I be like other people. Why does life seem more enjoyable and easier for others. To realise oh I'm very likely autistic and yet I've made choices and decisions that really haven't served me at all. I thought I would just cope and manage like "everyone else seems to" in hindsight having children combined with having no family or friends for support has really challenged me. I'm beyond exhausted.

I just find myself unravelling and realising the life I need to lead to have any peace just seems very difficult to cultivate or acesss. My tolerance and masking has really dropped lately. It's like I've hit a wall and I just can't anymore. I don't know if that's a common thing to happen when you realise you might be autistic?

mumofoneAlonebutokay · 19/04/2025 13:36

Hi everyone

Autistic mum of an autistic 6yo girl here

Spending the day horizontal as I'm exhausted and ready for back to school!

Errolwasahero · 19/04/2025 16:00

@Nepmarthiturn hi and thank you, very informative and interesting. I’ve ‘known’ for a while that I’m autistic, although I didn’t think it had impacted me much apart from when I was young and I adapted… only been really bad from cfs more recently but had imagined it was something that had always been an issue for me because I’ve tended to have big ‘bouts’ of weakness and fatigue. I still have spikes despite managing my energy very carefully. I recently had a bit of a meltdown and started to look into burnout, which made me wonder if these spikes are led by the autism. Your comments about how much they can be intertwined are very helpful, thank you. I will be seeking input from our occupational therapists and a few adjustments at work, if possible. It’s all helping me think differently about how I manage my life!

OneFineDay13 · 21/04/2025 23:10

Hello all joining the thread. Am 45 mum of 2 I know I have ADHD as confirmed by a psychologist but she said autistic traits also. I am in Scotland and don't have a formal diagnosis as my doctor won't push for one. Any help or advice welcomed thanks

OneFineDay13 · 21/04/2025 23:13

@JewelleryCat thank you and hi. Are you ok ?

OneFineDay13 · 21/04/2025 23:16

InMySpareTime · 03/02/2025 16:57

I had my Autism assessment today and now I'm officially diagnosed Autistic.
It's quite a relief to have a recognition of my struggles.
Now I have some certainty about the reasons for my needs.

That's great news you have a diagnosis

JewelleryCat · 21/04/2025 23:26

OneFineDay13 · 21/04/2025 23:13

@JewelleryCat thank you and hi. Are you ok ?

Yeah, I’m not too bad thanks for asking. How are you?

inkymoose · 25/04/2025 06:29

MightyGoldBear · 19/04/2025 13:33

Hello I'd like to join. I'm awaiting assessment focusing on getting my child assessed and supported first. Certainly from the school side of things it seems like there is no support. Im finding it very tough.

I've had years ago (i think ill informed )therapists say to me that I'm definitely not autistic. So I've gone through life so frustrated with myself. Why can't I be like other people. Why does life seem more enjoyable and easier for others. To realise oh I'm very likely autistic and yet I've made choices and decisions that really haven't served me at all. I thought I would just cope and manage like "everyone else seems to" in hindsight having children combined with having no family or friends for support has really challenged me. I'm beyond exhausted.

I just find myself unravelling and realising the life I need to lead to have any peace just seems very difficult to cultivate or acesss. My tolerance and masking has really dropped lately. It's like I've hit a wall and I just can't anymore. I don't know if that's a common thing to happen when you realise you might be autistic?

Hello @MightyGoldBear, I just wanted to reply to your post because I recognised a lot of what you are saying in the way I felt about myself only a few years ago. I eventually plucked up the courage to apply for an assessment and was told rather brutally that I was NOT autistic although they did concede that I had autistic traits.

Talking to my daughter about it afterwards, she felt that one of my autistic traits is to try to answer questions as honestly as possible and perhaps unconsciously try to tell people what I think they want to hear. There was some questioning during the assessment about autistic behaviour such as they gave the example of a young man who was getting his breakfast when his mother fell down dead in the kitchen and, not knowing what to do, he stepped over her body and put milk on his cornflakes and just sat down and ate his breakfast. "You wouldn't do that would you?"

So I would probably not have stepped over my mother's body in the kitchen and eaten my cornflakes. But I have had nurse training, and a lot of experience in dealing with peculiar and unexpected situations, so I wouldn't have been quite so flummoxed as that young man was, but what do you do if you really don't know what to do? Rhetorical question sorry. - but, I might have carried on eating my cornflakes and thinking what to do rather than flapping around calling ambulances et cetera. I might have.

Five years later I went for another assessment. I paid for it, the first one was on the NHS. The lack of understanding and compassion towards me, a woman in my 60s seeking to understand what's been going on my entire life, was very striking in the first assessment.

I also went to see a counsellor who specialises in autism in women. I cannot tell you how useful this has been.

Second assessment: diagnosed autistic. Help and support offered, mostly in the form of information, but so much more than I had the first time.

Now, instead of wondering what an earth is wrong with me and thinking I'm a freak and a weirdo, and I should stop moaning and just be like everybody else, I know that I am autistic and that my autistic areas are disabling to me. I may not look disabled, but in certain situations I find it very difficult. Now that I understand myself better, if I'm having a bad day or a lot of trouble with one thing or another, I consider my autism and I kind of take a step back. Because autistic. So that's how it is. Not my fault. Not stupid, not bad, not weird. Just processing things, executive dysfunction is a big one, organising, certain things I really can't understand, sleep, change of plans. Dyspraxia, poor hand eye coordination, sensory effects - particularly smell but also texture. Heat and light, cold and dark. Special interests, losing time, always late, feel better when I see something utterly beautiful such as a glorious beech tree down the road, that is just coming out into tiny leaves and makes me shiver when I see the curve and droop of its branches outlined against the sky.

You are not alone, Bear. I hope you will find some support and friendship here.

Errolwasahero · 26/04/2025 11:21

It’s like we’re finally waking up and discovering thinks about ourselves that we put way deep down inside… I find it difficult to answer the online ‘assessment’ questions because if I answer them how I am now I can ‘prove’ I’m not autistic. But I know deep down that it’s because I learned way back, almost instinctively, how to behave. How to fit. What was expected. My parents were amazing and let me just be whoever I was; but I still felt society bearing down on me, so I made changes. But it feels now like the weight of those changes is what’s bearing down, so I’m exhausted by life. More and more I want to drop out, to disappear.

inkymoose · 26/04/2025 13:33

Errolwasahero · 26/04/2025 11:21

It’s like we’re finally waking up and discovering thinks about ourselves that we put way deep down inside… I find it difficult to answer the online ‘assessment’ questions because if I answer them how I am now I can ‘prove’ I’m not autistic. But I know deep down that it’s because I learned way back, almost instinctively, how to behave. How to fit. What was expected. My parents were amazing and let me just be whoever I was; but I still felt society bearing down on me, so I made changes. But it feels now like the weight of those changes is what’s bearing down, so I’m exhausted by life. More and more I want to drop out, to disappear.

"Stop the world, I want to get off" ... sometimes I wonder whether a world, a society at any rate, designed for autistic people by autistic people, would be a better place to dwell.

Yes, I agree @Errolwasahero, discovering things about ourselves that we've hidden deep down, that's hard. But on the other hand I think it's good to know this stuff. If it's hidden, it will affect us anyway, and if we can see it, feel it, we can start to understand, and eventually let it go, if it's no good for us.

Says me, currently permanently sleep-deprived, it seems, trying to prevent myself from slumping into a helpless state. But I know that looking after myself is crucial for my physical and mental health.

I have a couple of female friends who, as they've got older, have become increasingly angry and brittle. I believe they're both undiagnosed autistic people, and both have the most loving and compassionate central core. But health problems have mounted for them, and it affects my relationship with them, because there's a lot less laughing and a lot more moaning when we're together, going over the same old ground, looking inward at their pain and not looking out, not making the connections they might have made only a few months ago. A kind of shutting down, shutting out. I feel it acutely and I know I can do that, too, express rage and disappointment instead of being "in the moment". It's part of that default "only big talk" setting. I love "big talk" but it can be veeery draining.

I also have a tendency to want to help people whether they want or need help or not. That's for working on ...

WearyAuldWumman · 26/04/2025 13:48

OneFineDay13 · 21/04/2025 23:10

Hello all joining the thread. Am 45 mum of 2 I know I have ADHD as confirmed by a psychologist but she said autistic traits also. I am in Scotland and don't have a formal diagnosis as my doctor won't push for one. Any help or advice welcomed thanks

I'm also in Scotland. I got a diagnosis of OCD nearly 30 yrs ago.

A couple of years ago, a HCP told me that that she thought I had ASD and ADHD based on my behaviours. No, she wasn't a psychologist - but she and and her children are neurodivergent.

A cousin's son got a formal diagnosis of Asperger's [sic] and ADHD 20 yrs ago. Another cousin's two grandsons were recently diagnosed at uni - went in to formalise a diagnosis of dyslexia; came out with a diagnosis of dyslexia and ADHD.

It's all on my mum's side of the family. Mum was "shy". One of her uncles used to have to leave the house when visitors came...he bought a field and built a "hut" with a working fireplace and took refuge there with his Shetland pony.

I did mention it all to my GP, but she just smiled and said "What's normal?" I'm much older than you - 65 - so I guess it's not worth pursuing a diagnosis at my age...but my goodness, reading about executive disfunction and masking has been an eyeopener.

I suspect that you would need to pay privately, @OneFineDay13 . I've only heard of school children being properly diagnosed here. (I used to be a secondary school PTC.)

WearyAuldWumman · 26/04/2025 13:50

Errolwasahero · 26/04/2025 11:21

It’s like we’re finally waking up and discovering thinks about ourselves that we put way deep down inside… I find it difficult to answer the online ‘assessment’ questions because if I answer them how I am now I can ‘prove’ I’m not autistic. But I know deep down that it’s because I learned way back, almost instinctively, how to behave. How to fit. What was expected. My parents were amazing and let me just be whoever I was; but I still felt society bearing down on me, so I made changes. But it feels now like the weight of those changes is what’s bearing down, so I’m exhausted by life. More and more I want to drop out, to disappear.

Yes...I remember being told off for not making eye contact - I learned to fake to an extent.

I also have a memory of walking down the road whilst flapping my mittens: "Don't do that! People will think that there's something wrong with you!" I think that I was about 7 at the time.

Errolwasahero · 27/04/2025 08:04

@inkymoose it’s weird, the way it all gets you anyway. I thought I’d dealt with it, have had therapy and all sorts. But there’s stuff…. Self care is important. But I’ve dialled it down to teeth and clean! I need to make time for me; for space in my head. Not sure how to manage that, it seems to getting filled with all the stuff I can’t do anything about.

YY to not going down the moany road! I have one friend, one who I feel comfortable with. When we get together it’s so easy, we do ‘big’ talk and laugh. Luckily my dp is the same so I get it with him too! I won’t let the old woman in!

@WearyAuldWumman i still ‘try’ to make the eye contact, then I feel awkward and worry that they feel awkward too, then I worry that if I stop it will look weird, then I forget what I was supposed to say 🤪

Errolwasahero · 27/04/2025 08:35

I’m looking into unmasking. My problem is, I think I’ve learnt it too well! How to unpick what’s real and what’s a mask?! I feel like there’s a distinct two sides of me in there!

WearyAuldWumman · 27/04/2025 11:56

Errolwasahero · 27/04/2025 08:04

@inkymoose it’s weird, the way it all gets you anyway. I thought I’d dealt with it, have had therapy and all sorts. But there’s stuff…. Self care is important. But I’ve dialled it down to teeth and clean! I need to make time for me; for space in my head. Not sure how to manage that, it seems to getting filled with all the stuff I can’t do anything about.

YY to not going down the moany road! I have one friend, one who I feel comfortable with. When we get together it’s so easy, we do ‘big’ talk and laugh. Luckily my dp is the same so I get it with him too! I won’t let the old woman in!

@WearyAuldWumman i still ‘try’ to make the eye contact, then I feel awkward and worry that they feel awkward too, then I worry that if I stop it will look weird, then I forget what I was supposed to say 🤪

When I was still teaching, I'd sometimes have a pupil pulling me up about not making eye contact. I'd just apologise and say 'Sorry - there's Asperger's [as it was then called] in my family and I sometimes have a problem making eye contact.'

However, it also came in handy. At one point, we had a course where pupils were required to address an audience and part of that included being obliged to make eye contact to get good grades.

I'd tell the kids: "Right. Do what I do. Fake it. Pick a spot on the wall above someone's head and look at that."

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