Autistic women assemble! #4

[RainbowZebraWarrior]

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:

Thread 3:

https://www.mumsnet.com/talk/_chat/4979068-autistic-women-assemble-3?reply=136877684

Thread 2:

www.mumsnet.com/talk/_chat/4865805-autistic-women-assemble-2

Thread 1:

https://www.mumsnet.com/talk/_chat/4777843-autistic-women-assemble

To think autistic children with needs affecting their day to day life should go to the top of the waiting lists? http://www.mumsnet.com/Talk/amiibeingunreasonable/5167300-to-think-autistic-children-with-needs-affecting-their-day-to-day-life-should-go-to-the-top-of-the-waiting-lists

Aaaargh!!!! 🤯😡🤬

I was just reading that thread! I feel for the OP it's so difficult to watch your child struggle.

However, I know a few children who are struggling day to day (and to my untrained eye clearly are neuro-diverse) and can't even get on the bloody list as they aren't bothering other children at school or disrupting the class.

Unrelated, thank you everyone who gave me advise about the "Right To Choose" thing. All my paperwork has gone off now and I've had a follow up appointment with the mental health person at the doctors surgery. If I don't hear back in 3 months I have to call them so hopefully that means things will move along a little.

@TheNameIsDickDarlington that's exactly the problem my children have had at school (even with a diagnosis!). They aren't disruptive and are intelligent so their support needs are ignored because their autism doesn't impact the school staff much.

Sorry, I don't know about right to choose because my diagnosis was done by the NHS a long time ago when it was still vaguely functioning. I think several here have gone through right to choose though so I hope someone can help.

Oh no don't worry about the right to choose thing, people on here had already given me some good advise about that and I'd had an appointment last week about it. Previously I've been waiting over a year for anyone to even acknowledge that my previous appointments has happened.

Yes my Ds's behaviours are all more internal, he's got many tics/stim behaviours. His social behaviours are clearly different. He gets home and has huge meltdowns. But in class he is way above his age in reading/ phonics and writing. He doesn't cause trouble and last term their class topic was on his special interest so he was really engaged and excited. So his school kept insisting he's fine. They don't see the issues at home with his sleep/eating and melt downs.

He reminds me so much of myself when I was young and I remember the internal struggle of it all and just want things to be easier for him.

I've even had teachers say to me "oh he's so clever, you've got nothing to worry about" or "He's just so gorgeous. He's doing fine"... yes he can be intelligent and good looking and also be struggling and ND.

Sorry that was a bit of rant.

Not a rant at all! It's exactly what I am going through with my children and the endless battles with school and the LA and now having to lodge tribunals. That's why that thread really got my back up. I posted on it under a different username. 🤣 It's all so hard isn't it, and especially when as someone autistic you have to fight this gaslighting (which we hate in general anyway because of our heightened sense of justice about laws being broken, and wanting a factual discussion and solution-focused approach which is exactly what LAs try to prevent happen

Sorry, posted too soon!

... try to prevent happening. But also because it's retraumatising because it brings back up the trauma many of us suffered when younger at school with no diagnosis or support.

I've done everything I possibly could to make things different for my children but the school and Local Authority and NHS seem to be determined to thwart all efforts and squander all opportunity for early intervention, actively obstructing it as much as possible at every stage then can do so. Very depressing: I had hoped things would have changed from when I was at school but if anything it us worse because back then people were genuinely ignorant about autism so didn't realise we were autistic, whereas now they know damn well and even when provided with reports from numerous doctors and specialists setting out support needs they ignore them on purpose. I think that's even worse.

How is everyone?

We are bumbling along with the usual stress with school and poor health. At least the sun is shining today. 😊😊

Hello @Nepmarthiturn all is well here.

DS2 is wonderfully settled in his flat. And DD2 has applied to be housed in the village now, too.

She has some serious health problems and needs to be somewhere calm. I helped her fill in her forms for benefits, and she was distressed, because she's worked full time since leaving university 12 years ago.

She asked me if I thought she might have inattentive ADHD and actually, thinking about it, it's possible.

I've also been wondering if her breakdown in health is possibly because she's been masking autism so well for so long, that she just can't anymore.

I need to tread carefully as she's quite fragile ATM.

I have filled in both parts of my assessment form with psychiatry d o t c o m and told them I couldn't think of anyone suitable to complete the informant form. So I suppose now I just wait.

Age 47 and now officially AuDHD.

ADHD was assessed first, then ASD.

The two separately didn't make sense to me, but when I got them both and the contradictions were explained to me, it finally made sense. It was the biggest epiphany!

I have so many contradictions. My whole life and my quirky self makes sense to me now. The exhaustion and burnout. The stims I never knew were stims. My need for excitement and my impulsively, the hatred of routines while needing them...

My sense of justice and fairness. All makes sense.

Getting the diagnosis made the world of difference to me. The reasonable adjustments are incredibly important and I don't have to feel guilty asking for them.

Life is so much better now

@SwordToFlamethrower Really pleased to hear how that has worked out for you.

Congrats @SwordToFlamethrower That feeling of relief when everything falls into place is priceless.

I didn't have anyone. It shouldn't hinder your assessment.

All the best for getting an appointment within a reasonable time.

Thank you, I appreciate that.

This is wonderful to hear!

It sounds like she may be in burnout from trying to sustain "normal" life for so long while paddling like crazy under the surface to stay afloat?

So great that your son is settled and happy there. That will also make it such a supportive place for your daughter to be once she moves, having you and him there for her.

I wish I had a family like yours! It seems you support your kids so much, and genuinely care for them and try to help them even as adults. That kind of sounds insulting 🙈 as though that shouldn't be the norm! But believe me it isn't with many parents. 😔

We had wonderful parents, so a very good example.

DD is waiting to get her eviction notice, so that her application for housing can be escalated.

UC have given her precisely nothing in four months towards her rent. Bastards.

DD's autistic friend has asked me to help her challenge her PIP decision. I seem to have a reputation for being able to complete the DWP forms.
😂

That's so far for her, to be forced to go through the threat of eviction before a move can be approved. Where is the compassion?

You do seem to be the expert on going to war with them. I may well need your help with this soon... I use my PIP to fund a car so my nannies can take my children to school and back, to clubs and back etc (I'm mostly so unwell with ME that I'm housebound much of the time but work full time from home to fund the mortgage, nannies etc). I try to go out once per week but there's a huge backlash.

My PIP claim was up for renewal with threatening letters to send it back promptly in Jan or Feb. I did so. The current award expired in August. Got a text saying they are "looking at it" and it will continue to be paid until they do. If they randomly decide to withdraw it I presume they'll come and take my car? Then children won't be going to school etc, brilliant. So much stress caused by these people. Like they think my autism or ME - both incurable/ untreatable - will have vanished suddenly. 🤔 What could they possibly need to "check"?! I've been autistic since I was born and had ME for 15 years now...

Not "so far"! I meant "so hard". I think I merged "hard" and "unfair" in my brain and came up with "far". 🤣

It's agonising to be up for renewal.

I think the best thing is to say that you have a neurodevelopmental condition which was present from birth and which will not ever change, by its very nature.

You should be okay. But the DWP are such bastards.

Have you seen this website?

www.benefitsandwork.co.uk

It's my go-to for anything related to benefits.

It's such a good website. The advice is superb.

But @Nepmarthiturn do, by all means, DM me if I can help

Hello ladies. May I join you please?

I’m 52. Diagnosed autistic just before Christmas. Still coming to terms with it, and building my life anew in the knowledge that my neurodiversity exists, shouldn’t be hidden, and I should not feel afraid to explain what I need to other folk.

😊

Hello @MrsEmmelinePankhurst and welcome to the thread.

Welcome @MrsEmmelinePankhurst 🙂