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Neurodiverse Mumsnetters

Use this forum to discuss neurodiverse parenting.

Neurodiversity support thread for women with suspected, diagnosed or self-diagnosed autism, ADHD and other NDs #18

999 replies

PolterThreadStarter · 14/06/2017 07:01

As usual, latest support thread.

Welcome Easter Smile

OP posts:
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29
Chouetted · 21/07/2017 21:30

I had the dubious pleasure of being told once by a GP that he thought I had a personality disorder, because I had "inconsistent affect" - ie, I was telling him I was really upset, but I didn't look like it.

He didn't look like an ignorant twit, either. Looks can be so awfully deceiving.

It's just a shame my reaction at the time was to burst into tears as soon as i made it out of the room. I didn't have an ASD diagnosis then, but I've been told by various people, including other medical professionals, that I set their autism radar off pretty much as soon as they see me.

Polter · 21/07/2017 21:37

I apparently have flat affect too. I always feel quite animated but obviously it's all in my head.

toffee1000 · 21/07/2017 21:42

Apparently I can look upset/grumpy or whatever when I don't actually mean to look that way. I've never had a monotonous voice, though - I've always been quite expressive when reading aloud.

Polter · 21/07/2017 21:45

Yes, my face often 'says' the wrong thing. My voice is monotonous though.

GeekLove · 21/07/2017 22:11

I have flat affect too. As well as resting bitch face and a weird speaking style - like short fast packets of information with large gaps of silence when not speaking.

Also when something major happens like a bereavement it's not like I don't feel it, it comes out differently - like getting cramps in my legs after my father died, and rashes - things like that.

Apparently my ability to guess emotions - Theory of Mind is very low - about the lower level recorded by men - so it sort of explains why people think I am being rude or sarcastic at inappropriate times.

Having said that, friends and co-workers think it is obvious I am an Aspie - but I can now put it down officially.

FaithAgain · 21/07/2017 23:08

I relate to all of the above. Weird reactions to grief, yes. Worst was contact dermatitis on my hands which never went away. Talking for long monologues then leaving a big pause, yup! Apparently I have a monotone voice but I don't really notice it.

I've had issues with this abdo pain where people don't see the pain to be as bad as I state....I think I come across as quite stoic? The OOH GP who admitted me said Well I can't necessarily say how you are but you're here on a sunny Sunday afternoon saying it's an 8/10 so it must be bad.

Chouetted · 21/07/2017 23:41

I have a piece of paper I take to medical appointments that explains my autism and how it may affect my symptoms. Things like not looking in pain when I am and light touch being painful. I've had a lot of positive comments from people about it, and some definite shifts in perception from professionals after reading.

toffee1000 · 22/07/2017 05:59

I've never really been one to cry at sad moments. I get upset, yes, but I don't out-and-out sob.
I get eczema, too, but I doubt it's to do with ASD. Dad has it (mum suspects he is aspie in some ways), but then again my brother has it too and he's not ASD.

Just got me thinking - I don't really have any sensory issues as such; not a fan of loud music in a club but then I suppose that's not really surprising. I don't like wearing long-sleeved t-shirts, oddly. Jumpers/cardigans are alright, just long-sleeves tops. I didn't mind them when I was younger though. Fairly wide food palate (although my favourite thing EVER as a kid was pasta with tomato sauce which is still up there as a favourite) with a few dislikes but then that's just normal. Don't have a problem with bright lights, I do have shortsightedness/astigmatism but again that's not really an aspie thing.

HerRoyalFattyness · 22/07/2017 22:04

I seem to be very tolerant of pain to be honest. I don't necessarily notice it. But the labels and seams of clothes bug me. I'm sensitive with a high pain threshold. I'm very strange Grin
I can't wear certain things because of how they feel. And my hearing is really good. I've never hard a baby monitor and when I had a "friend" (turns out she really wasn't a friend) stay, she brought a monitor go use with her DD, and I heard her DD before her baby monitor registered the sound.
I am typing and can hear both toddlers snoring, the TV, the cat walking around and the wind outside.
As for emotional reactions, I never cry at sad things on TV when it's real people like 24 hours in a and e etc, but cry my eyes out at anime Grin I form very strong attachments to certain anime characters and it really upsets me if something happens to them.

BertieBotts · 23/07/2017 10:30

How funny, anime makes DH cry as well but he's never even slightly affected by programmes about real people or with actors whereas they really get to me. He's also not very good at communicating his pain level which is why I know when he says "I think I need to go to hospital" it's really bad. I don't think he is ASD though. Unless it's possible to be only a tiny bit ASD anyway.

HerRoyalFattyness · 25/07/2017 07:38

urgh. First day off work today that I'm not meant to have. I have a bug Sad
I feel horrible. And it's 48 hours so can't go in tomorrow either.

Polter · 25/07/2017 07:47

Get well soon Fatty Flowers

FaithAgain · 25/07/2017 08:20

You'll have been exposed to new germs so it's not surprising you'll pick stuff up to start with. You're immunity will improve though! Get well soon!

HerRoyalFattyness · 25/07/2017 08:38

yeah. I'm surprised its not happened already to be honest with you. I've been there a month!

MrsNutella · 25/07/2017 16:35

HRF GET WELL SOON! Oops... didn't mean that to all be in caps... oh well. GrinFlowers

HerRoyalFattyness · 25/07/2017 17:38

it's fine. I can pretend you're shouting it to me over the internet Grin

Polter · 25/07/2017 18:08
Grin
Cyb0rg · 28/07/2017 01:20

Hello everyone, may I join the thread? I’ve name changed but I’ve been on MN a good while. I mostly hang out in AIBU and recognise – and posted on – both the threads mentioned recently, about the daughter with the BPD diagnosis and the woman who couldn’t cope with her sister anymore. Glad to have found you all.

I've operated on the basis of a self-diagnosis for some while. I learned most of what I know about ASD from MN and links posted on MN and recognised myself and my various challenges immediately I started reading – such a relief after years of not really understanding what my problem was. I guess this is probably a common path. I'd like a formal diagnosis but there are no NHS options for adults in my area and money is too tight at the moment for private. I’d like the validation of a diagnosis but also the option to get support for the things I'm struggling with without the risk of being pigeonholed into a mental health category.

I think I may be burning out. I'm middle aged and have masked my issues for years, more successfully in some circumstances than others. I fake it constantly. My immediate family know about my self-diagnosis but very few others. The few people I told reacted with scepticism, so I stopped telling people but it means the fakery is constant, and I often feel like a loser when I can see people wondering what’s wrong with me but I don’t feel able to tell them. Recently, I've found it harder and harder to keep on an even keel. ‘Difficult’ people make me fall to bits, particularly passive aggressive people. I can’t engage with them on their own terms – I can’t behave in a nuanced, manipulative way, it’s not in my skillset. I end up melting down spectacularly from the frustration of someone who is being rude and obstructive in a polite and civilised way. It looks like a tantrum to the outside eye, or a woman on the edge of a nervous breakdown. I remember similar incidents as a child and adolescent, but as an adult I learned to cover it all up and lately I seem to be losing that skill and it scares me. I’m scared of losing what I’ve accomplished, my career, my family, if I can’t get this under control, and sometimes I’m just scared of the sheer intensity of my meltdowns.

Sorry for the long post. I just wanted to vent tbh. I’ll figure it out, I guess. There doesn’t seem to be much out there about autistic burnout. I'd be interested in other people’s experiences. Or actually, I’d just like to chat, as everything's feeling a bit hard atm.

autisticrat · 28/07/2017 01:31

What a beautifully-written post. I identify with a lot of that. Welcome to the thread :)

Polter · 28/07/2017 07:22

Hello Cyb, no, there really isn't much about autistic burnout at all, Cynthi Kim (Musings of an Aspie blog) and Jax Blunt (liveotherwise blog) have both written a bit about it, but nobody seems to researching it yet.

If you are up to it or have someone who can advocate for you, if there is no commissioned adult diagnosis service in your area your GP can apply to the local CCG to apply for funding with a private provider.

Flowers
FaithAgain · 28/07/2017 08:07

Welcome Cyb0rg. Aspie burnout isn't well recognised or documented but I've definitely had it at least twice. First time diagnosed with 'post-viral fatigue' (possibly glandular fever), second time depression following long periods of anxiety. I didn't realise I was Aspie at that time. Aside from diagnosis, things that have helped me include counselling, reading up on ASD, working part-time. I also do a weekly online shop with a meal plan and set shopping list (sounds like a small thing but has given me loads of control over the food, given me meal options each night, reduced waste and meant that I don't have to go to the supermarket, all of which made me stressed).

I hope you'll feel welcome here, we are a lovely bunch.

Cyb0rg · 28/07/2017 09:45

Thank you all. I think the way I feel right now has been triggered by stress tbh. I'm having a hard time at work in a job I really, really wanted but which has maybe turned out to be more than I can chew. I'm getting bogged down in things and feel guilty and stressed a lot of the time, and then someone asks about something I haven't taken care of and it triggers a PDA like response in me. I don't deal at all well with demands, so try to stay out ahead of them in this new job, not always successfully. We also have money problems, which are generating a lot of demands of other sorts. Sad

Which is why I came looking on the MNSN boards and found you guys, which is very cheering. Years ago I lost a LOT of excess weight with the support of a lovely bunch of people on a Usenet Newsgroup (dating myself here!). I've never forgotten those women. There's strength in numbers, something I often forget. Smile

beardymcbeardy · 28/07/2017 10:18

Hi all, can I also join in too? To cut it short a lot of what Cyb just wrote :D except if I cant deal/understand certain people I try my best to just avoid them or if thats not possible try be extra nice to them. My ds (6) is formally diagnosed, I am not. Have researched and identify with so many of the traits I have read, and did that test online, got 39. Have tried twice to get diagnosed, first dr told me that autism was a childhood disorder and I gave up with him. Second Dr told me because I have good communication skills and can hold a conversation I dont have autism. Which made me really doubt myself. But a lot of work and thinking and preparation go into my communication skills, its not natural. And when Im caught on the hop, then Im not so sure my communication skills are all that great. There is a local nhs group that diagnoses ASD in adults but you cant self refer and they told me they only deal with people who are obviously struggling and need help.

Cyb0rg · 28/07/2017 12:23

Hello beardy.

This is partly what puts me off pursuing an NHS diagnosis, the horror stories of doctorly ignorance. I'd like a formal diagnosis, but I think I'd be crushed by being told that I was not autistic and just exaggerating or attention seeking or something. And I know from experience (a relative, not me), that if an HCP has a perception of you as an attention seeker it can follow you and your healthcare around like a bad smell. I have a good relationship with my GP atm and I'd like to keep it that way. Confused Plus, I guess, a sense that resources are thin and there are people who really, really need them more than me. I'm trying to get a diagnosis for an 18yo DC atm, and we're coming up against similar problems, but I find it easier to advocate for him than for myself.

I relate to what you say about communication skills. I find mine vary wildly depending on who I'm dealing with. It puzzled me for a long time, I thought it should be more fixed and consistent. Now I think it's a bit like being hard of hearing, and some people mumbling and other people enunciating clearly. The diability is the same, but the experience is very different. I think some people naturally signpost in conversation better than others, and that can make it easier for us to join in without fucking up.

Cyb0rg · 28/07/2017 12:24

*disability