Autistic women assemble!

[Nepmarthiturn]

...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!!

Ugh.
Picking at my nail beds!

I started a week after both our cats died, two years ago.
I ended up with plasters and bandages on most of my fingers. For months. Then they'd clear up for a bit.

They got better about six months ago. And then I had a wobble last week and they're so painful again. I don't know why I can't stop.

Sorry to hear so many of you are suffering with focusing on things that cause you harm, I'm very fortunate in that I've never had anything like that.

Here's a question off the back of @TheShellBeach mentioning binge eating, I've struggled with my weight all my life (I have PCOS which makes it even harder to lose weight). With overeating it's because I like the sensory aspect of foods if that makes sense. So I might eat something and really enjoy the texture so will want more of it, not because I'm hungry but purely because of the texture, sometimes the smell sometimes the taste but 90% of the time the texture.

I can count on 1 hand the number of times I've actually felt hungry, it just doesn't happen I just don't get the hungry signals or the need the toilet signals (until I'm absolutely bursting) and the GP/nurse/whoever I see about my weight just doesn't seem to get it. I could easily eat for example a huge bowl of pasta not because I'm hungry but for the texture sensation and I won't get the full feeling until I'm so full I'm borderline bringing it all back up.

Is anyone else like this or is it just me?

I'm exactly like this!
100%.

Never really full, and capable of eating vast volumes of food.
Ice cream. I once ate two litres of Mackie's and I would have had more if there'd been any.

I think that may be a part of the prioprioception that ASD screws up? Many people don't realise when they are hungry: thirsty/ full/ in pain etc. Just feel stressed but do not know why because the signals from the body to brain are disrupted somehow?

I get what you mean with foods, but in a different way. I love food, I LOVE cooking. But because I do not feel hungry so often don't think to eat for a day or more. Then when I start eating I realise I am starving and eat loads. I need something really tempting in front of me to tempt me to want it. And even then sometimes I just forget and feel stressed out then a few hours later realise it is hunger or thirst. Being the only adult here with nobody to prompt me to eat probably makes it worse.

That sounds so painful. 😔

Team work does indeed suck. Even worse, team-building exercises. Fuck that for a game of soldiers.

@StopStartStop this should be placed in the same category as waterboarding and result in the instigator should be rewarded with a one-way ticket to the Hague.

Yes, I think body-focussed repetitive behaviour disorders/BFRBs may be more common in people with ASD and ADHD than anyone realises, maybe because most people either don't think to mention it to their doctors or are afraid or ashamed to, or it gets subsumed into either self-injurious behaviour, stereotypy, self-stimulatory behaviour, self-harm, or one of the other words used for things we do.

I'd never really connected that to autism in my head before, pulling my hair out or biting nails or pulling skin off etc but it makes total sense now you've said that.

It's horrible that the ASD and ADHD pull against each other in some ways, so one masks the other a bit, then when one is treated the effects of the other get worse. 😩 Like I fighting a constant war in your own brain.

Apologies for ungrammatical weirdness: not had much sleep!!

From the Autism Centre of Excellence at Cambridge who need our help. Please see the links.

We have created a “benchmarking survey”. The UK government and other service providers, like the NHS, use official UK surveys (like the Annual Population Survey) to help them decide what services to invest in. Parts of these official surveys measure the health and wellbeing of the UK population. However, they don’t ask whether the people completing them are autistic or not. This means that there is no way for service providers to tell from these surveys how autistic people’s wellbeing differs from the rest of the UK population.

The purpose of our survey is to ask autistic people questions from these surveys and then compare their answers to the official data. We hope that this comparison will enable us, the government, funders, and service providers to understand better how to meet autistic people’s needs.

We have now launched the benchmarking survey. To make the survey as useful as it can be, we need as many UK-based autistic people to complete it as possible.

If you are autistic, aged 16 or over, and living in the UK, you can take the survey yourself by visiting bit.ly/BenchmarkACE.

We would also be very grateful if you could share the survey with any UK-based autistic people whom you know, to help us reach more people. You might choose to share:

• The link to the survey: bit.ly/BenchmarkACE.
• Our website post about the survey: www.autismcentreofexcellence.org/help-us-stop-autistic-people-being-invisible-in-important-surveys/.
• Our social media posts about the survey: Twitter, Facebook, LinkedIn.

I have no idea why what I just posted has been hidden! It is a really important survey to ensure that autistic people get the right services they need.

@mnhq could you explain? And reinstate my post please?

^^ Thought this would be useful for as many people as possible to fill in, to help gather evidence on the huge gaps in services and support.

Did the survey. Waiting for the thought police to arrive any time.

😆😆 Wouldn't be surprised @StopStartStop ! Mumsnet even temporarily deleted my post when I shared it here. They've not explained why. But glad it is back up again and I hope that the more autistic people respond, the stronger evidence base there will be to demand the lack of support is addressed.

I received that survey in an email so I've already filled it in, weird that mumsnet hid your message with it in @Nepmarthiturn

I've been ranting and raving today(mostly in messages to DH lol), this flippin teamwork thing, without going into details we are working on a project that will be put forward for a competition. One of the things being judged is teamwork and one of the team members obviously doesn't know the meaning of it. We are supposed to be sharing the work, discussing problems, coming up with ideas together etc and this 1 person has just ploughed through 2 of the 5 things we are meant to do (and posted it in the group as done) even though 1 of them had already been discussed and a different team member was taking the lead on it. I just want to scream at her to stop being so selfish. I get it she's keen and excited, I am too, I've already completed all 5 things but not said anything because I want the others to have a chance at contributing(and I'm happy to go with other people's work over mine). 1 team member hasn't even said a word in the group (it's all online btw) so no idea if she's dropped out. So annoyed because I had the option to do it alone but just had to "challenge myself" to work with people. I also wanted to avoid having to present my work at the end in front of hundreds of people, in a team it's just 2 people who present not the whole team, well guess whose going to be presenting 😩

Hi everybody.
Where have y'all gone?

I've lost nearly two stone since I last posted, cancelled our holiday and dyed my hair.

Hi 👋

Is the ND board not used? Genuine question as I have the topic hidden.

Yes, the ND board still exists.

Well helloooooooo! 😊😊😊

Sorry for being AWOL also. Been so ill and totally overwhelmed with stuff.

Why did you cancel your holiday? 😕

What's the new hair colour?

Well done on the weight loss, that is impressive! 👏👏👏👏🎉

It's still there, but I posted this thread here because that board is hidden from "trending threads" etc so many don't realise it's there, or see the threads posted, so they often get few responses. 😕 I didn't even realise it existed until I'd been on MN for years!

I understand why it's hidden: apparently it used to get lots of nasty trolls on it, or just clueless people posting horrible and ignorant responses. But unfortunately it does mean that lots of people don't find it because they have to specifically look for it, and if you don't know it's there then you wouldn't know to do it. So for this thread, which was to try to gather as many of us together as possible for mutual support, posting in the general chat topic seemed a better option on balance.

Thanks for the explanation! I should look in there really.

Things have been a bit bonkers here. Health issues, summer holiday childcare 😵‍💫, small one's birthday, trying to prepare for trip abroad which I know will kill my health, desperately fighting clutter battle in my house, family drama, I feel like my head my explode. 🤯🤣

And I am increasingly furious at this terrible weather. Desperate for some warmth and sunshine.

You are very welcome here also! 😊

@camelCase how are things with work now? Just seen your post and it sounds like it was really hard. 😩

Hi @Nepmarthiturn !
I'm sorry you haven't been well.
My hair is a dark blonde.
We had to cancel our holiday because one of our cats became very ill and died.

It sounds like your life has become very overwhelming at the moment.

I hope things calm down soon.

Stay here! All welcome.