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Join the discussion and chat with other Mumsnetters about everyday life, relationships and parenting.

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 · 09/01/2024 18:02

Hi @QuickFetchTheCoffee and welcome!

RainbowZebraWarrior · 09/01/2024 18:27

Welcome @Barbarachicken and @QuickFetchTheCoffee

Being kind to ourselves I think is one of the biggest favours we can do. It's so difficult to find some quiet heads pace when trying to advocate for your child and the feeling of constantly battling for support for them.

DD has had two medical appointments today and has been asleep on the sofa since 4pm. It's a rubbish time of year as well, so I'm looking forward to lighter nights.

catmomof3 · 09/01/2024 20:22

I'm still waiting for my diagnostic report I know they said up to 4 weeks but the wait is driving me crazy.

jennylamb1 · 09/01/2024 20:37

I was interested in some expert advice on if it's ever right to suggest to someone that they may have autism. My son is diagnosed and having learnt a great deal about the condition from CAMHS and other organisations I do occasionally come across adult women (and men) who have a lot of flags but I don't know if it's appropriate or how to gently suggest. For instance, people I've interacted with in a professional capacity who have been very literal, have unintentionally offended, had strengths in rule-driven roles such as teachers with excellent behaviour management expectations that kind of thing. I have read some of the comments saying what a difference it makes to people's lives in understanding themselves, however at the same time there is the risk of upsetting people whilst trying to do a good deed.

RainbowZebraWarrior · 09/01/2024 20:44

@jennylamb1 No, in my opinion it's not appropriate at all.

The only time it may ever be so is if it is someone you know very well and they ask you (or perhaps confide that they are struggling with life in ways that sounds similar to traits you have direct experience of yourself) As an undiagnosed person with no actual personal experience I think it would be very wrong.

I am making an assumption that you are not diagnosed, as you only mention your son being diagnosed.

Also, female presentation is very different from male.

RainbowZebraWarrior · 09/01/2024 20:46

Also, I would not describe Autistic traits as 'Flags'

PurpleBugz · 09/01/2024 20:56

Just saying hi. I did not know such a thread existed and am very happy to find it! Will join in more when I have the energy.

I'm diagnosed autistic and adhd. Have 2 autistic kids and one probably autistic. I was diagnosed as an adult when I realised I was autistic following my son very clearly being autistic. Common story I know.

To those wondering diagnosis is absolutely worth it. I knew for at least a couple years before my official diagnosis and knowing helped but the diagnosis was like a cure for anxiety and feeling inadequate.

My number one bit of advice is plan in down time before you feel overwhelmed. I used to have a breakdown every 3ish years before I knew it was really burnout. Then it was mini burnouts every month or so. Now I plan a fortnightly day off where I don't do people AT ALL not even my kids their dad has them. Not had any burnout since I started that.

We are not broken we are different

PurpleBugz · 09/01/2024 21:05

JewelleryCat · 09/01/2024 12:36

Does anybody else colour code? I love colour coding on some things

YES!

Everything is colour coded. When at school/uni each subject had its own colour. For work each child I care for has their own colour cup/flannel/bag for boots etc. Even my rooms are coloured every time I move house the kitchen bathroom and my bedroom get painted exactly the same colours.

I just love colour

TheShellBeach · 09/01/2024 21:25

@jennylamb1 are you autistic yourself?

Psychoticbreak · 09/01/2024 21:37

@jennylamb1 no it is not appropriate and they are not 'flags' of anything.

TheShellBeach · 09/01/2024 23:30

Why are non-autistic women showing up and telling us why they're not autistic?

It's irrelevant. And annoying.

BeachedOff · 09/01/2024 23:43

Would love to join please, I have found it really helpful reading this thread. I am on a waiting list with Psychiatry UK for an assessment and I am so hoping it will happen this year (for both Autism and ADHD) I feel like I am in limbo waiting for my life to begin again. It would be great to have an answer for my brain.

ToThineOwnSelf · 10/01/2024 09:51

Please can I join? I am due to have an assessment in February although I am pretty convinced even without having it. I am in my late thirties and a started to suspect it last year after reading one particular magazine interview and lots of threads on here. The documentary by Christine McGuinness felt like it was describing my life.

I’ve found it really difficult to accept that it’s probably the main reason things haven’t gone “right” for me, and if it had been known sooner my life could have been a lot better.

Something else that’s on my mind, is that my boyfriend and I have been talking about having children, but he’s intimated that he won’t want to if I get this diagnosis, due to the hereditary nature of it. I don’t know if that is correct and what I should say to him.

Nepmarthiturn · 10/01/2024 09:54

It was actually a very close friend of mine who first very gently suggested to me that I might be autistic and I'm very grateful for that because I knew nothing much about autism at all and had no idea about the different presentation in women so had never considered the possibility. Her comment was brief but enough for me to go away, take some tests, do some research and then the penny dropped.

However, she is an extremely close friend, more like family. And we have a relationship where I frequently go to her for advice and another perspective as she's the kindest and most reasonable person in the world (and able to redraft pretty much anything I need to say to toxic people like family into a more gentle phrasing that still communicates the same thing!). And I have explicitly told her many times that if she thinks I am wrong about something to please be honest and tell me straight and she knows I won't be offended. Also she knows what she is talking about regarding autism because of her professional qualifications and experience. So those are some fairly mountain-sized caveats about what made it ok for her to suggest it to me!!

In any case though, clearly this thread isn't the place for random queries like that from non-autistic people when they could post a separate thread about it and ironically several of us might have responded to that with helpful advice in that context!

What was that about a lack of empathy/ social awareness?! 🤣

OP posts:
Nepmarthiturn · 10/01/2024 09:54

Great to see so many new posters and I will catch up and read everything soon I hope! Been an insane week. 😩

OP posts:
TheShellBeach · 10/01/2024 10:54

Hello and welcome to @ToThineOwnSelf

I'll write a better response to you later. I need to get on to my laptop.

RainbowZebraWarrior · 10/01/2024 11:17

Hi @BeachedOff I was diagnosed by Psychiatry UK. My Psychiatrist was amazing!

Also, hi to @ToThineOwnSelf I don't know how long you and your boyfriend have been together, but that should be an equal discussion and decision between you both, I'd say. I'd be very angry if a partner said that to me or 'decided' that without my input.

RainbowZebraWarrior · 10/01/2024 11:24

Hello to you, too @PurpleBugz I'm also a colour co-ordinator! Jumpers in the wardrobe, stationery, home decor and even the tins in the food cupboard haha.

I hope you don't mind me saying this, but I'm not a fan of 'we are not broken, we are different'. It sort of insinuates that ourselves and others may view or have viewed us as broken in the first place. Totally appreciate that language is such a personal thing and very emotive. I think I try to stay away from any negative connotations as I've seen how my daughter struggles with even just feeling different.

RainbowZebraWarrior · 10/01/2024 11:31

I just wanted to share this with you all. It's a short film made by a group of Autistic children who were part of an Autism Activists group via North East Autism Society. It's a charity that supports myself and my daughter. It's called 'Let me be me' and I think it's well worth a look (and if you've got kids yourself to show them)

A lot of what they say is exactly how my daughter has tried to explain how she feels to me.

https://www.ne-as.org.uk/News/help-us-win-charity-film-award

Help our activists win charity film award

Our Autism Activists are in the running for one of the world's biggest charity awards - and your votes can help them win!

https://www.ne-as.org.uk/News/help-us-win-charity-film-award

Nepmarthiturn · 10/01/2024 13:07

What a beautiful video @RainbowZebraWarrior. That made me feel tearful. And quite crushed. I hope I don't make the same mistakes that my parents did, and which they are still doubling down on now. I hope it is better for this generation growing up now but there's still so far to go.

OP posts:
TheShellBeach · 10/01/2024 15:26

@ToThineOwnSelf

I am quite upset by the thought that your boyfriend thinks you shouldn't have children if you're autistic. (I realise you haven't yet got your diagnosis but it seems very likely).

Yes, autism is inherited. Three of my four children are autistic. They are wonderful human beings and I wouldn't be without them.

What your boyfriend is essentially saying is that he would prefer any future children not to be like you. I find that unacceptable. He is saying that you're not good enough yourself.

I struggled throughout my life, not knowing my diagnosis, not even considering such a thing. I did have a very successful career, though, despite the struggles. It was my wonderful second husband who gently suggested that he thought I was autistic about four years ago.

Once I looked into it more (and bearing in mind my children's diagnoses) I realised that of course I was autistic and had ADHD as well.

Knowing why my life had panned out the way it did was just brilliant. I finally knew why people thought I was odd and eccentric. I joined a long, long series of dots and felt gradually better and happier.

Having children, any children, is always a gamble. We none of us know what they'll be like and if they'll have disabilities.

Autism is not the end of the world. I can see many positives, actually, from my own point of view. I love (really, really love) my detailed musical abilities, and my extensive knowledge of true crime and Agatha Christie books. Oh, and Dorothy L. Sayers (another two women who would surely be diagnosed as autistic today).

Anyway - I'm rambling now. But I would actually rethink a relationship where my own essence, my own being, my own personality and quirks were seen as somehow wanting - for that is what your boyfriend means - if our children are like you, I do not want to have them.
I hope that makes sense.

TheShellBeach · 10/01/2024 15:30

And also @ToThineOwnSelf - two of my autistic children have got university degrees - not that that means anything in particular - but just to show you that being autistic does not equate to not being academically successful.

But perhaps your boyfriend didn't mean academic success? Only you know what he really means, of course.

There are negatives - yes, many negatives. The way the NT community mistreats the ND community is appalling - but we're starting to fight back and make them see that they can't dismiss us and mock us with impunity nowadays.

RainbowZebraWarrior · 10/01/2024 15:38

I agree with you, @TheShellBeach I'd be beyond upset and it would actually be a deal breaker for me.

Some more good news here. I've just got my PIP letter from being awarded last Friday. The letter says they won't be asking to review until at least 2034, so that's a 10 year award. I'm absolutely over the moon, as it was a change in needs and my actual award was due to run out later this year. My god, I have fought tooth and nail for this, but I honestly didn't dream I'd be awarded for 10 years!

JewelleryCat · 10/01/2024 16:06

10 years is amazing @RainbowZebraWarrior. You can breathe a sigh of relief now and celebrate 🙂

TheShellBeach · 10/01/2024 16:49

@RainbowZebraWarrior Yay! A ten year award is really nang, as DS would say.

My award was also for ten years, with a "light touch" review at the end of that time (assuming I'm still alive). In fact the Scottish system is much better anyway, because everyone gets ten years.

That sounds like they're getting sentenced for a serious crime.

Grin

Thinking of sentences for serious crimes reminds me of the years that I was a midwife and psychiatric nurse at Holloway Prison. I had DS2 during that time, so it was twenty eight years ago.

Golly. Rose West was on remand at the time.