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

Autistic Women Assemble! #2

982 replies

Nepmarthiturn · 06/08/2023 11:18

Helloooo lovely people, a new thread for a us to continue to chat and connect with other autistic women (small talk and word mincing not required). 😊

As before, anybody newly stumbling upon this is very welcome to join us (even if still awaiting diagnosis). But we'd be grateful if others could leave us alone please, like the NT man we encountered in thread #1. 🤣

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40
IHateTuesday · 08/11/2023 17:23

TheShellBeach · 08/11/2023 17:05

I always thought I had something because people said I could be too up front or open about things without thinking

Same here. Forever being told I'd said something inappropriate.

Exactly! I always feel terrible afterwards but at the time I’m just like ‘what, it’s true’

TheShellBeach · 08/11/2023 17:38

IHateTuesday · 08/11/2023 17:23

Exactly! I always feel terrible afterwards but at the time I’m just like ‘what, it’s true’

🤣🤣🤣

Nepmarthiturn · 08/11/2023 18:25

That "too up front or open" is considered a criticism shows the sad state of the world IMO!

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Nepmarthiturn · 16/11/2023 11:24

All very quiet here! How is everyone doing?

OP posts:
TheShellBeach · 16/11/2023 11:40

I'm pretty much okay, except for one thing. I've been referred urgently to ENT via the two week wait system.
I'm 95% sure they won't find cancer, but it's on my mind.

In other news, DS will be moving to the village next week. I had a frantic phone call from him on Sunday, because he became very anxious about packing his stuff and sending it via Evri.
But I think he's calmed down now, even though he doesn't believe that the packages will arrive at my house.

It was so hard for his ADHD and autistic brain to pack things, weigh them, label them and arrange the collection of them. But he did it. I'm quite proud of him!

Anyway, he then left his father's house and is staying in London with his brother for a few days, then coming up here.

toffee1000 · 16/11/2023 11:50

Moving house is stressful enough for neurotypical people, never mind autistic people! So well done to your son for managing @TheShellBeach ! That’s a real achievement Smile

SwordToFlamethrower · 16/11/2023 13:33

I'm officially on the nhs waiting list. 2 years to wait for a full assessment. Seeing my gp next week about also referring me for ADD and also about "right to choose" to speed up the wait.

I've started doing videos on YouTube of my discoveries, just to process what I'm learning and talking about some of the more invisible traits I suffer with/experience.

My husband is my carer and I can't/won't work anymore.

I've been assaulted, bullied and raped by NTs all my life and I have chosen to protect myself, going forward. My life is much better and safer at home.

SwordToFlamethrower · 16/11/2023 13:55

imautisticandalsoabitch · 10/08/2023 10:53

Good morning all, currently sat by a sunny window trying to wrestle a cushion out my dog's mouth! I would post a photo but I fear someone will recognise me from my cute dog 😂🐶

Hello @daffodills1 I'm sorry to hear you're in burnout. I've been in burnout since around 2019, it's kind of leaving but I've had some major setbacks with a very ill family member and landlord stress so everything feels very difficult again.

I would love a job but I've not been able to work outside the home for many years, in part due to issues like this @camelCase .There's too many variables about how crap other people can be and I would never sleep for the constant whirring in my head about actual/perceived/potential problems and then all the processing of every conversation afterwards.

Trying to get people to understand this is extremely difficult.

Is anyone here had any success with PIP. I nees to apply but I fear the worst with this.

I have been getting pip for several years for PTSD, CPTSD and anxiety disorder.

I'll be adding ASD/ADD to the list of reasons I can't work on my next PIP assessment.

If it helps, I am strictly paper based assessments due to fawning/freezing/panicking/mirroring/masking/disassociating.

I've learned the hard way that authority figures cause me to behave in ways that are even against my own best interests, therefore I cannot be assessed on anything but paper. The facts, not an interrogation designed to stress and trigger.

TheShellBeach · 24/11/2023 17:20

@SwordToFlamethrower that's really interesting. Thank you.

DS2 needs to apply for ADP and I'm going to help him with the forms.
He only gets a tiny amount of Universal Credit. Nobody has helped him at all.

His ADHD means that he's impulsively spent almost all his savings, on things which he kind of doesn't need.

But DH and I are so thrilled he's here.

Sonrien · 01/12/2023 13:53

If it helps, I am strictly paper based assessments due to fawning/freezing/panicking/mirroring/masking/disassociating.

@SwordToFlamethrower This is such an insightful summary of my experience in job interviews. I'd thought I was just crap at them. The process triggers me. I don't know if that is cptsd or neurodiversity.

RainbowZebraWarrior · 01/12/2023 14:28

Sonrien · 01/12/2023 13:53

If it helps, I am strictly paper based assessments due to fawning/freezing/panicking/mirroring/masking/disassociating.

@SwordToFlamethrower This is such an insightful summary of my experience in job interviews. I'd thought I was just crap at them. The process triggers me. I don't know if that is cptsd or neurodiversity.

Sorry to jump in, but I have a PIP assessment next week. They asked me for a face to face, but I rang them and said no way. The guy was really nice and noted how my Autism meant that I would go into panic mode having to go in person, so I have a Tel assessment. I screwed up royally last year at Tribunal due to a mixture of mutism / one word answers, getting upset and fawning and mirroring. It was an ugly mess and I think they had me down as a surly, pretentious arsehole who didn't want to work for a living. I'm still not over it to be honest. Do I mention this in my assessment (it's a CoC and I'll have to go through it all again in about a year) I'd love to not have the worry of the actual assessment. I've got so many physical issues, I shouldn't have to 'rely' on my Autism to score the points, and I have loads of evidence. Just wondered what I needed to do to make them understand I can't reliably do assessments (they didn't believe a word I said on my forms last time, but I wasn't diagnosed then) Hope you don't mind me asking, I've noticed on a PIP discussion that you were strictly paper based (I appreciate there is maybe more at play in your case)

Edited to add: I hate being asked questions. I don't even like people asking "what are you doing today?" I don't have a partner for that reason. At the Tribunal I explained that I hated being questioned and the judge said "I bet you don't!" Insinuating that I was intending to be dishonest.

Sorry for the essay. Hope everyone is well.

WhichIsItWendy · 01/12/2023 14:51

Hey. I'm 36, without a diagnosis (or assessment) but highly suspect I have autism. I told someone my suspicions for the first time a few weeks ago, it felt huge and was really positive. It was someone outside of my daily circle so I felt safe enough to talk about it and leave it there. I'm still umming and ahhing about diagnosis due to the cost. The impact on my daily life isn't enough to go via NHS I don't think...

Unfortunately, I struggle with threads like this as I don't have the patience or memory to read through and connect with people in that way. But I've read posts and definitely nodding along!

It's strange, as I age, I'm noticing some traits getting more emphasised. For example, I really struggle to tell people what's social appropriate Vs honest. It's like the filter I may have had at some stage is weakening and I just have to tell the truth now otherwise I feel very inauthentic and uncomfortable.

I'm also finding that I'm taking more literally and less able to interpret people when they don't talk in plain facts. I used to be able to accept when I felt something was inaccurate but as I get older (and maybe more stressed since having kids?) I'm finding it more difficult.

I'm also feeling overwhelmed much more often.

Is this something others have experienced?

RainbowZebraWarrior · 01/12/2023 14:58

@WhichIsItWendy yes, it's often mentioned that it becomes more difficult/ noticeable/ hard to mask / taking things more literally. This can be the cumulative result of decades of masking.

For me, physical ill health then menopause massively amplified my Autism. I fell of a cliff both mentally and physically and sought assessment at the age of 51 via NHS right to choose pathway.

It's a familiar story, and the reason a lot of women are being diagnosed or exploring assessment in their 30s, 40s, 50s and beyond. It's also, unfortunately why some NT folk think that it's some sort of attention seeking bandwagon. Ha! The irony.

bippityboppity87 · 01/12/2023 18:58

Does anyone feel the cold more intensely? I'm sitting here freezing with the heating on, an Oodie, a duvet cover and blanket and just about warm. I'm the same in the summer months. I hen it's hot, I'm TOO hot and sweating like crazy. I can't seem to regulate my body temperature at all

WhichIsItWendy · 01/12/2023 19:46

RainbowZebraWarrior · 01/12/2023 14:58

@WhichIsItWendy yes, it's often mentioned that it becomes more difficult/ noticeable/ hard to mask / taking things more literally. This can be the cumulative result of decades of masking.

For me, physical ill health then menopause massively amplified my Autism. I fell of a cliff both mentally and physically and sought assessment at the age of 51 via NHS right to choose pathway.

It's a familiar story, and the reason a lot of women are being diagnosed or exploring assessment in their 30s, 40s, 50s and beyond. It's also, unfortunately why some NT folk think that it's some sort of attention seeking bandwagon. Ha! The irony.

Thank you for coming back to me. It's reassuring to hear it's pretty normal to experience heightened symptoms as we age.

Although I guess I also wonder if it's just normal and that I'm misdiagnosing myself and actually I'm just struggling. I've never felt "right" but I struggle with self doubt and there's always a cynical part of me that thinks I'm making it up.

That's the worst part for me, the regular inner thoughts that I have autism and then that I'm a dramatic egotist who doesn't as I get by in life ok. Wish I wasn't so analytical and just allowed myself to be me!

WhichIsItWendy · 01/12/2023 19:47

bippityboppity87 · 01/12/2023 18:58

Does anyone feel the cold more intensely? I'm sitting here freezing with the heating on, an Oodie, a duvet cover and blanket and just about warm. I'm the same in the summer months. I hen it's hot, I'm TOO hot and sweating like crazy. I can't seem to regulate my body temperature at all

Not really for me. I mean, I run cool always but lots of women in my family do. My husband is a bit bod and always on the warmer side.

RainbowZebraWarrior · 01/12/2023 20:10

WhichIsItWendy · 01/12/2023 19:46

Thank you for coming back to me. It's reassuring to hear it's pretty normal to experience heightened symptoms as we age.

Although I guess I also wonder if it's just normal and that I'm misdiagnosing myself and actually I'm just struggling. I've never felt "right" but I struggle with self doubt and there's always a cynical part of me that thinks I'm making it up.

That's the worst part for me, the regular inner thoughts that I have autism and then that I'm a dramatic egotist who doesn't as I get by in life ok. Wish I wasn't so analytical and just allowed myself to be me!

Have you completed the AQ50 online? It's a starting point and often one that you're asked to do to weigh up whether you score highly enough for assessment. (It scores in a way that tells you if you have Autistic traits qnd to what level)

Also, for me it was quantifiable. I didn't just feel a bit odd. I only ate 3 foods for the first 15 years of my life, I was painfully shy and hid from people, wouldnt stay over at friends / disliked going to peoples houses. I have many major sensory issues - I had meltdowns as a child if I had to wear certain things or had to go to the beach, would retch at the smell of school dinners cookkng while the rest of the kids were going "Mmm, mince!" I inspect food and will open sandwiches and take out the contents to check them. I massively prefer to be alone, I don't really understand banter. I have always had obsessive special interests. Had imaginary friends as a kid, never really fitted in with anyone. Hate socialising - I either clam up completely and people think im an arse, or I overshare. Detail. Constant detail required. Needing to know every aspect of a medical issue for example.

Once I put myself forward for assessment, I wrote my life story. My psychiatrist said he'd never seen such detail and that I have a complex symptom profile.

Yes, for me, it is definitely quantifiable. For me, part of my obsessive personality meant that I needed to know. I suppose that's when you realise if and how significantly it impacts your life.

I hope that all makes sense. Everyone is different, however, and will score differently on sensory / social and communication aspects. As the saying goes, If you've met one Autistic person, you've met one Autistic person.

WhichIsItWendy · 01/12/2023 20:29

RainbowZebraWarrior · 01/12/2023 20:10

Have you completed the AQ50 online? It's a starting point and often one that you're asked to do to weigh up whether you score highly enough for assessment. (It scores in a way that tells you if you have Autistic traits qnd to what level)

Also, for me it was quantifiable. I didn't just feel a bit odd. I only ate 3 foods for the first 15 years of my life, I was painfully shy and hid from people, wouldnt stay over at friends / disliked going to peoples houses. I have many major sensory issues - I had meltdowns as a child if I had to wear certain things or had to go to the beach, would retch at the smell of school dinners cookkng while the rest of the kids were going "Mmm, mince!" I inspect food and will open sandwiches and take out the contents to check them. I massively prefer to be alone, I don't really understand banter. I have always had obsessive special interests. Had imaginary friends as a kid, never really fitted in with anyone. Hate socialising - I either clam up completely and people think im an arse, or I overshare. Detail. Constant detail required. Needing to know every aspect of a medical issue for example.

Once I put myself forward for assessment, I wrote my life story. My psychiatrist said he'd never seen such detail and that I have a complex symptom profile.

Yes, for me, it is definitely quantifiable. For me, part of my obsessive personality meant that I needed to know. I suppose that's when you realise if and how significantly it impacts your life.

I hope that all makes sense. Everyone is different, however, and will score differently on sensory / social and communication aspects. As the saying goes, If you've met one Autistic person, you've met one Autistic person.

I think I have before but I couldn't remember how I scored. I've just completed it again and scored 29, so close to the boundary.

I don't have a lot of solid traits that make it easy to think "autism". I don't have intense hobbies or interests. I can socialise when I need to (I just feel incredibly anxious and self conscious). I can small talk but have always struggled beyond that. I'm ok when I have a script of questions in my head but I struggle to carry conversations into real friendships.

I don't have sensory issues with eating or noise etc. But I do have some stimming habits like picking nails, skin, pulling hair, biting lips. I've had them for as long as I can remember.

I also can't stand being late or my plans changing last minute. I've had multiple 'meltdowns' when people have made me late or plans are changed or cancelled last minute. It makes me feel irrationally out of control. When I feel like that, it can get so bad that I ask my husband to lie or sit on me and only that pressure makes me start to relax.

I think I'm very good at masking. If need be, I'll push myself out of my comfort zone and can fake it. I'm a manager at work and always feel fake. But I suffer as a result as need a lot of down time to 'recover' from the efforts.

RainbowZebraWarrior · 07/12/2023 12:09

Hi. How is everyone doing?

I'm totally burned out. Had PIP Assessment yesterday. 3 hours and 18 minutes!! I don't understand why it took so long. Every descriptor in so much detail. I think she was trying to help me, but I'm feeling in shut down mode today. At least I got it changed from in person to telephone! The stress and tension has made the pain from my disability flare up and everything just feels spiky and wrong. Every joint aches and my skin hurts. I can't settle, can't concentrate, I can't get warm or comfortable, and there's no quiet in my head. I need to switch off and just wait for the decision, but there is no switch. I always end up having big appointments in December, and it sort of ruins any thoughts of enjoying a relaxing run up to Christmas.

Anyway, hopefully all will be OK in a couple of days.

TheShellBeach · 07/12/2023 12:27

Hi there Rainbow.

I'm feeling stressed just reading about that.

I'm helping DS fill in his application for ADP and it's taking me back to when I claimed it for myself.

I hate the DWP and their horrible assessments.

Nepmarthiturn · 09/12/2023 10:29

Ahhh @RainbowZebraWarrior that sounds so draining. At least it is over with now.

It is like some kind of joke that all of these things require interviews, telephone calls etc when you are dealing with autistic people! Same kind of sick joke as my recent debacle having to phone around pharmacies trying to find stocks of ADHD medication! I can't help but think much of it is set up to make things as hard as possible deliberately, not to support as it is meant to. It seems a running theme in all public services: armies of people who think it is their job to find ways to stop you accessing the support you need, rather than provide it.

@WhichIsItWendy yes I have definitely found both my autism and ADHD far more pronounced as I've got older. Peri-menopause apparently affects both, but I also think it's just weariness of it all. I've exhausted all patience and goodwill with putting up with nonsense from people and gradually realised the hypocrisy of NT people demanding we fit into their preferences when we've been doing that our entire lives and they make pretty much zero accommodation for us, yet claim we're the ones lacking social skills! I now think, "why should I?". I'm so exhausted with work and kids etc I just do not care anymore what other people think. I spent much of my life being a doormat especially with family and my tolerance is gone so I won't put up with it anymore and call out the crappy behaviour every single time. It hasn't gone down well, but tough! Why should we always be the ones to suck it up while our needs are ignored when we already have to work twice as hard to cope with daily life?

OP posts:
Nepmarthiturn · 09/12/2023 10:29

@TheShellBeach that's great your son is all moved in now! Is he much happier?

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Nepmarthiturn · 09/12/2023 10:45

bippityboppity87 · 01/12/2023 18:58

Does anyone feel the cold more intensely? I'm sitting here freezing with the heating on, an Oodie, a duvet cover and blanket and just about warm. I'm the same in the summer months. I hen it's hot, I'm TOO hot and sweating like crazy. I can't seem to regulate my body temperature at all

And yes to this. I cannot stand the cold. I shiver in anything below 20°C and even that it uncomfortable. Always been the same and putting on jumpers etc does not help because my hands and face are freezing. It was made worse I think by growing up in a freezing cold house. When I'm cold I can't think about anything else except being cold.

My daughter is exactly the same. First time in her life it snowed she was so excited. I wrapped her up and she was outside for 2 minutes then decided to come back inside and go under the electric blanket. 🤣 I had my chimney swept in Sept during that warm spell in the mid-20s and she started asking my to light a fire that evening. We have to keep the house heated to 22°C.

My son is the opposite though: refuses to wear a coat and wants to wear shorts to go out in winter! Whereas I love it when it's hot. Even the Sahara desert was fine for me! As long as it isn't humid though: that's horrific.

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TheShellBeach · 09/12/2023 10:55

@WhichIsItWendy I've also found my response to things has been more extreme as I've got older.
Last week, for example, I had a raging meltdown when someone over the phone was both unhelpful and very rude to me.
I was surprised by how ferocious it was. I felt completely out of control.

Anyway...... yes, since being diagnosed I've noticed things more and more about myself. And I'm more aware of the reasons why I think and respond the way I do.

@Nepmarthiturn DS is very, very happy.
He's thrilled to be here. We went to a quiz last night and he really enjoyed himself.

His house is a frightful mess but all his siblings have told me not to go round and offer to tidy it up. I can't anyway, as he lives up two flights of stairs and I can't manage them these days.

After I'd completed the ADP forms I asked him to read what I'd written. He was deeply unimpressed but I told him that the DWP don't give you points for the things you can do easily.

In any case, I'm realising that he's far more disabled by his ADHD than I'd previously realised. He isn't aware of it himself, from what I can see. His father has spent 28 years telling him he's lazy and deliberately disorganised.
Which of course isn't true.

It's glorious, having him round for dinner most nights. He then watches a bit of telly with us, then schlepps off back to his flat. He says he likes the idea of going out more now.

It's all good.

Nepmarthiturn · 09/12/2023 11:37

I think the inoact of years of masking and tolerating everything builds up until you just can't anymore. There was some interesting research not long ago about the mental health damage that masking does. Not cheerful reading in its conclusions!

That is wonderful news about your son, especially that he is coming out of his shell and enjoying some social activities now that he is in a kind and nurturing environment with people who support him instead of belittling him. So lucky he could get a place so close to you! It must be lovely for you, also, having him over for dinner most nights.

Uuuuggh his father sounds horrific. The damage it does to a child, being blamed for their disabilities. I was reflecting on this the other day, how my daughter is almost a little clone of me, it's uncanny. She is kind and thoughtful and so empathetic but when overwhelmed she just loses control and her emotions burst out. Exact same issues, same sensory issues, likes the same foods even, lives in an imaginary dreamland, loves music and art, but has huge rejection sensitivity and very low self-esteem and blames herself for everything, always hyper-vigilant. But the master masker and so articulate for her age so everybody thinks she's confident and robust when she's so, so fragile. She tries to control things because she's extremely anxious and insecure but people misunderstand and think it's because she's domineering. It's why I defend her ferociously, because she has to know there is somebody on her side, someone who understands and will protect her and listen and not blame her. She's like a little butterfly flitting around in her imaginary world with all these people who don't understand her trying to crush her wings. I just can't let history repeat itself and let her end up like me. When I think of myself at her age and how I was treated it makes me feel so sad.

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