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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!!

OP posts:
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camelCase · 04/04/2023 12:38

Collaborate · 04/04/2023 12:13

Hope I can add to this thread. I'm not autistic but my 18yr old daughter was recently diagnosed. She's away at University in her first year and has spent most of her time cooped up in her room. Choosing modules that don't have exams, stuff like that.

The worry I have for her is that doing anything that involves new interactions is incredibly tough. I wonder how she'll cope applying for kobs and when in work, and worry about her vulnerability in any relationships she has (not aware of any yet).

Yet the people posting here seem to have jobs and families, so I suspect I'm catastrophising somewhat. Can anyone put my mind at rest?

I have the same worries for my DD who is almost 18 and is also autistic. Especially as I went through some horrific relationships/experiences growing up, I'm very fortunate that I was still very young when I met DH who is honestly amazing.

I've tried to really instil in DD what a healthy relationship is, red flags etc but ultimately just being here for her if things go wrong.

As for work DD is going to struggle she has worse social anxiety than me, I can just about cope being physically around people(like in supermarkets etc) but it absolutely exhausts me. She can't even do that, she ends up having a panic attack around groups of people. Even in shops she often has to go outside to regulate for a few minutes and then come back in.

She knows her limitations and is seeking a career she can do on a self-employed work-from-home basis. She even researched and found a diploma course for the subject she's interested in.

BrightWater · 04/04/2023 12:38

@Collaborate your daughter's situation reminds me of mine at that age. What helped me most was having a wonderful, supportive, non-judgemental family back home to whom I could go when it got a bit much. It sounds like you are a lovely mum 😊

Nepmarthiturn · 04/04/2023 12:40

Collaborate · 04/04/2023 12:13

Hope I can add to this thread. I'm not autistic but my 18yr old daughter was recently diagnosed. She's away at University in her first year and has spent most of her time cooped up in her room. Choosing modules that don't have exams, stuff like that.

The worry I have for her is that doing anything that involves new interactions is incredibly tough. I wonder how she'll cope applying for kobs and when in work, and worry about her vulnerability in any relationships she has (not aware of any yet).

Yet the people posting here seem to have jobs and families, so I suspect I'm catastrophising somewhat. Can anyone put my mind at rest?

Hello! Firstly, well done for supporting her in getting a diagnosis, accepting it and looking for ways to understand/ support her. It sounds obvious but you'd be amazed how many autistic children (and adults!) do not get this from their families.

In terms of being cooped up, has she talked to you about how she feels about this? It could be that the demands of the compulsory social interaction at lectures etc are enough and she really needs this downtime and space to cope. Or it could be that she feels isolated and lonely and doesn't know how to change this and is struggling to adjust to the huge change of living away from home, living with strangers, etc. Very important to talk to her about how she's feeling if she will open up to you.

Also, does the university have good pastoral support? Do they know her diagnosis? They should be helping, making adjustments if needed. Can probably connect her with other autistic students if she wishes.

Being autistic and living in a world not designed for you is hard. We are all different and each struggle with some things more than others. I hope her diagnosis report gives you some useful information on which areas she's most likely to struggle with and what kind of supports she may need. Many of us do manage a lot, but it often comes at a huge cost, with burnout and damage to mental health. Masking and desperately trying to fit in does a lot of damage.

What is positive is that now hopefully as she has a diagnosis and is still young she can be kinder to herself. It's a lot to process but it can really help, to accept yourself and instead of "bashing your head on walls" trying to do what everyone else does and thinking if you just try harder you will be able to, you can instead forgive yourself and focus on finding a niche that suits you.

I am often overwhelmed because I designed a life for myself that is overwhelming, before I knew I was autistic. Children, demanding job, and now I am stuck with no way to reduce those demands. Some autistic people might cope fine with that, but for me it is too much but now I am trapped. Your DD is young and still has lots of options so she can hopefully find a life that will work for her and enable her to be content and happy.

Beware of the "swan gliding on the surface while it is desperately paddling underneath to keep afloat". Many autistic women reach burnout and have mental health crises in late teens/ early 20s when life becomes just too much. She is lucky to have a supportive mother who is looking for ways to help her.

OP posts:
Nepmarthiturn · 04/04/2023 12:41

countingallthseconds · 04/04/2023 12:15

Hello, diagnosed last Sept, happy to be here

Welcome! 😊

OP posts:
Collaborate · 04/04/2023 12:42

BrightWater · 04/04/2023 12:38

@Collaborate your daughter's situation reminds me of mine at that age. What helped me most was having a wonderful, supportive, non-judgemental family back home to whom I could go when it got a bit much. It sounds like you are a lovely mum 😊

I’m her dad, but thanks.

I’ve recently lost a lot of weight as I realise I want to be around for as long as possible for her. I think she’ll always need us.

Exibstudent · 04/04/2023 12:44

Is this thread open to those without a diagnosis?
My parents were told I was probably autistic when I was a child by an ed pysch but didn't pursue a diagnosis due to fears it would hold me back. They didn't bother telling me of course, so I just felt different and awkward. Now I have an autistic husband, 2 autistic daughters (and a neurotypical son) and started considering whether I might also be on the spectrum only to find out my family have all known about the ed pysch opinion and not told me, even when we were pursuing a diagnosis for my daughters.
I have a diagnosis of PTSD, which makes obtaining an autism diagnosis much more challenging but various screenings all indicate it's a strong possibility.

Nepmarthiturn · 04/04/2023 12:46

I’m her dad, but thanks.

Ooops, sorry for my assumption on that too!

OP posts:
BlibBlabBlob · 04/04/2023 12:47

Just checking in, will be back to read the thread later. I'm 45, diagnosed autistic at 42 but knew for quite a while before that as a result of DD12's atypical journey through childhood (she was diagnosed aged 10).

BrightWater · 04/04/2023 12:48

@Collaborate oh sorry! My dad was fab too 😊

TheShellBeach · 04/04/2023 12:48

hourbyhour101 · 04/04/2023 12:32

eccentric - that word has followed me around since birth.

I'm often said to take after my late grandma who was also eccentric. A fair amount of my family are and I wonder if she was around she would be classed as having asd too !

Now when I hear that word about other people I think ... ah is that another asd tribe member in hiding ?

I mask quite well people often say things like oh that's just one of hourbyhours quirks. I was quite floored when after my Dd got diagnosed they said have been also 😵‍💫

I believe that a lot of my extended family are autistic.
About one in three are obviously autistic and probably lots of the others (especially the women) would get a diagnosis.

Collaborate · 04/04/2023 12:48

Nepmarthiturn · 04/04/2023 12:40

Hello! Firstly, well done for supporting her in getting a diagnosis, accepting it and looking for ways to understand/ support her. It sounds obvious but you'd be amazed how many autistic children (and adults!) do not get this from their families.

In terms of being cooped up, has she talked to you about how she feels about this? It could be that the demands of the compulsory social interaction at lectures etc are enough and she really needs this downtime and space to cope. Or it could be that she feels isolated and lonely and doesn't know how to change this and is struggling to adjust to the huge change of living away from home, living with strangers, etc. Very important to talk to her about how she's feeling if she will open up to you.

Also, does the university have good pastoral support? Do they know her diagnosis? They should be helping, making adjustments if needed. Can probably connect her with other autistic students if she wishes.

Being autistic and living in a world not designed for you is hard. We are all different and each struggle with some things more than others. I hope her diagnosis report gives you some useful information on which areas she's most likely to struggle with and what kind of supports she may need. Many of us do manage a lot, but it often comes at a huge cost, with burnout and damage to mental health. Masking and desperately trying to fit in does a lot of damage.

What is positive is that now hopefully as she has a diagnosis and is still young she can be kinder to herself. It's a lot to process but it can really help, to accept yourself and instead of "bashing your head on walls" trying to do what everyone else does and thinking if you just try harder you will be able to, you can instead forgive yourself and focus on finding a niche that suits you.

I am often overwhelmed because I designed a life for myself that is overwhelming, before I knew I was autistic. Children, demanding job, and now I am stuck with no way to reduce those demands. Some autistic people might cope fine with that, but for me it is too much but now I am trapped. Your DD is young and still has lots of options so she can hopefully find a life that will work for her and enable her to be content and happy.

Beware of the "swan gliding on the surface while it is desperately paddling underneath to keep afloat". Many autistic women reach burnout and have mental health crises in late teens/ early 20s when life becomes just too much. She is lucky to have a supportive mother who is looking for ways to help her.

Thanks. That’s very helpful. She’s already arranged to live with 2 close school friends next academic year and she looks so happy in their company. I’m sure she’ll be less socially isolated. Will be able to talk to her this weekend when she comes home, but obviously she’s not very chatty.

Nepmarthiturn · 04/04/2023 12:49

Exibstudent · 04/04/2023 12:44

Is this thread open to those without a diagnosis?
My parents were told I was probably autistic when I was a child by an ed pysch but didn't pursue a diagnosis due to fears it would hold me back. They didn't bother telling me of course, so I just felt different and awkward. Now I have an autistic husband, 2 autistic daughters (and a neurotypical son) and started considering whether I might also be on the spectrum only to find out my family have all known about the ed pysch opinion and not told me, even when we were pursuing a diagnosis for my daughters.
I have a diagnosis of PTSD, which makes obtaining an autism diagnosis much more challenging but various screenings all indicate it's a strong possibility.

Yes of course. Very welcome here if you think you are ND. I'm sorry, it sounds like you've been through a lot and have a lot to cope with!

I was told by two different paediatricians that it would be very unlikely genetically for both of my children (a boy and a girl) to be autistic unless both of their parents were ND. Something about the heritability across the sexes. Need to look into this more but 🤯🤯🤯 and too many other things I am supposed to have done but haven't. But interesting. Not sure if relevant for your family.

But anyway, welcome!

OP posts:
TheShellBeach · 04/04/2023 12:49

I'm loving this thread.

Nepmarthiturn · 04/04/2023 12:50

hourbyhour101 · 04/04/2023 12:24

@Nepmarthiturn oh my lord thank you thank you thank you 🙏🏻

I'm so pleased how many want to join! 😊😊😊

OP posts:
TheShellBeach · 04/04/2023 12:51

I find it fascinating that a lot of us seem to be married to other autistic people.

Anxious001 · 04/04/2023 12:55

Would like to join. Pretty sure I am autistic.

Nepmarthiturn · 04/04/2023 12:58

Thanks. That’s very helpful. She’s already arranged to live with 2 close school friends next academic year and she looks so happy in their company. I’m sure she’ll be less socially isolated.

That sounds brilliant. She'll have support and people she's comfortable with but her own space when needed.

Will be able to talk to her this weekend when she comes home, but obviously she’s not very chatty.

🤣🤣🤣

Definitely let her breathe a huge sigh of relief being back in her safe and familiar space and decompress. I hate it when for example straight after work I'm bombarded with questions or chat. I remember all the questions after school as a kid, "what have you done today?", it felt like an interrogation when I'd just had 6 hours of non-stop noise and interaction. 🤯😩 The journey back itself is likely to ne sensory overload and stress. I hope if you pick your moment well over the weekend she'll open up to you.

OP posts:
Nepmarthiturn · 04/04/2023 12:58

Anxious001 · 04/04/2023 12:55

Would like to join. Pretty sure I am autistic.

Welcome! 😊

OP posts:
Nepmarthiturn · 04/04/2023 13:00

And sorry if I've missed anybody from "welcome" posts! Not meant to cause offence. Having a 🧟‍♀️🤯 day now so losing the plot a bit, my smallest child is now ill so trying to wrangle with GP telephone system. Pray for me.

So glad so many people are here and such nice posts. Was worried I'd start the thread and nobody would respond, so phew!

OP posts:
surlycurly · 04/04/2023 13:02

My last serious partner was ASD and ADHD. We got in famously but it was pretty draining. I have dates other autistic men too- they just suit me.

Nepmarthiturn · 04/04/2023 13:09

TheShellBeach · 04/04/2023 12:51

I find it fascinating that a lot of us seem to be married to other autistic people.

Mine did not go well. 🤣🤣 Lone parent now. But not because he is neurodiverse. Because he is a €$%#.

OP posts:
teacakie · 04/04/2023 13:09

I don't want to throw a negative but it's bothering me so much that this thread is for autistic women yet a man has already dipped in.

I mean if that what people are happy with, fair enough, but I had hoped this would be a respected thread where our boundaries were recognised. If it's for autistic parents generally maybe it need the title changed.

I appreciate that poster does indeed sound like a lovely parent, but they are not an autistic woman.

Now I shall get my coat, before you all see me off.

countingallthseconds · 04/04/2023 13:11

My DH is definitely neurodiverse. I think inattentive ADHD and autistic. He hasn't got the executive function to sort out diagnosis or medication and I am past the point where I give up my precious energy to do this stuff for him.

countingallthseconds · 04/04/2023 13:11

teacakie · 04/04/2023 13:09

I don't want to throw a negative but it's bothering me so much that this thread is for autistic women yet a man has already dipped in.

I mean if that what people are happy with, fair enough, but I had hoped this would be a respected thread where our boundaries were recognised. If it's for autistic parents generally maybe it need the title changed.

I appreciate that poster does indeed sound like a lovely parent, but they are not an autistic woman.

Now I shall get my coat, before you all see me off.

I immediately felt uncomfortable too, but technically we can't police this place. It's open to all.

Idratherbepaddleboarding · 04/04/2023 13:13

Hellooo. I’m feeling good as the sun is shining and I come alive in the sunshine. I recently started a new job which I love, but one thing I’m struggling with is working with another autistic woman. Even though I see so many of my own traits in her, I can’t help but find her irritating 🙈. I hope I’m not showing it though. How do you deal with people who are just too much like you??

Here’s a pic of my very muddy special interest.

Autistic women assemble!
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