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Original poster

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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toffee1000 · 28/10/2023 16:46

I don’t go much into the main bits of Mumsnet (Chat and AIBU), so I find out about those threads on here. People are just horrible sometimes. That poor kid… I get that parenting a neurodiverse child can be tough sometimes, but surely there are good bits too.

TheShellBeach · 28/10/2023 17:28

Jeez there's another one!
Send help!

Original poster
Nepmarthiturn · 28/10/2023 18:25

toffee1000 · 28/10/2023 16:46

I don’t go much into the main bits of Mumsnet (Chat and AIBU), so I find out about those threads on here. People are just horrible sometimes. That poor kid… I get that parenting a neurodiverse child can be tough sometimes, but surely there are good bits too.

There are, a lot.

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Original poster
Nepmarthiturn · 28/10/2023 18:27

Hppe you're having a relaxing time back at home now @bippityboppity87! Shops are hell IMO. 😆

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Original poster
Nepmarthiturn · 28/10/2023 18:35

You're right.
I must stop doing it!

It's so hard! It's infuriating to see it perpetuated. In an ideal world Mumsnet would stamp it out but they don't seem bothered even when it's reported. 😔

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Original poster
Nepmarthiturn · 30/10/2023 09:39

How is everyone?

First day back to school today. Not fun. We alway end up with meltdowns as we are about to leave. Does anybody else with autistic kids have any tips that helped with the transition and getting them out of the house calmly on school mornings, when they were primary aged?

Also I know a few others on the thread have mentioned also having ADHD. Nowhere within 50 miles seems to have my medication in stock because of this shortage. Is anybody else having the same problem? I am so, so stressed about running out because I will not be able to function, I'm barely coping with juggling kids and all the issues with school and work as it is, and without the meds I will have a breakdown I think, it will push me over the edge.

I have spoken to the psychiatrist and he said they have no system for allocating what stocks there are based on need which is insane. I know running out would be awful for anybody but I'm the sole carer for two disabled children and I won't be able to function without it. It's not like I can drop the ball and just do less until it comes back into stock. I'm really scared what will happen.

And I'm also really angry that no stocks of such essential medicines are kept nationally to ensure sufficient supply if there is a global shortage. It seems no "lessons were learned" about preparedness for supply issues after the PPE debacle during the pandemic. I'm also fed up of the dismissive attitude from even medical professionals about this, saying things like "I know it will be inconvenient...". Inconvenient?!? They'd never say that to a diabetic who can't get insulin, or an epileptic who can't get their medication, or a cancer patient: "sorry, two sessions of chemo will have to do".

If anybody has any advice or info on when it will come back into stock please share. I've tried the boots stock checker and there is nothing near here, nothing near where my nanny lives, nothing near my friend's office in London as she said she could pick some up for me if needed. Online it seems to say stock will be back "between October and January" but when you only have two weeks worth of supply left, that is terrifying. There is NO WAY I can cope without it for half of November and all of December.

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TheShellBeach · 30/10/2023 10:41

What is the medication?

TheShellBeach · 30/10/2023 10:42

I can see if the pharmacy here has it.

Original poster
Nepmarthiturn · 30/10/2023 10:44

It's Elvanse

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Original poster
Nepmarthiturn · 30/10/2023 10:45

Apparently several different ADHD medications are out of stock everywhere, some kind of global supply shortage. Nightmare. 😔

That's so kind of you @TheShellBeach

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TheShellBeach · 30/10/2023 11:09

Well, my darling friend in the village pharmacy can't get Elvanse for love nor money, Nep. Not any strength.

Sorry about that.

TheShellBeach · 30/10/2023 11:11

It sucks, doesn't it.
There's a general shortage of HRT as well.

I bet if men needed it to survive, there'd be plenty available.

toffee1000 · 30/10/2023 11:17

I’m on Concerta XL - well, technically not right now, I’m looking to restart after being off for a while - and apparently it’s only the 54mg tablets that aren’t in stock. That’s what I found from googling, anyway. Since I’d be restarting I’d likely start off on the lowest, 18mg, and work up.
It’s been a pain in the arse trying to contact the GP about my meds anyway, and this shortage isn’t helping matters!

Original poster
Nepmarthiturn · 30/10/2023 11:37

TheShellBeach · 30/10/2023 11:09

Well, my darling friend in the village pharmacy can't get Elvanse for love nor money, Nep. Not any strength.

Sorry about that.

Thank you for trying. I don't think there is any, anywhere. 😩

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Original poster
Nepmarthiturn · 30/10/2023 11:38

TheShellBeach · 30/10/2023 11:11

It sucks, doesn't it.
There's a general shortage of HRT as well.

I bet if men needed it to survive, there'd be plenty available.

Absolutely guarantee they'd have it stockpiled!!

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Original poster
Nepmarthiturn · 30/10/2023 11:40

toffee1000 · 30/10/2023 11:17

I’m on Concerta XL - well, technically not right now, I’m looking to restart after being off for a while - and apparently it’s only the 54mg tablets that aren’t in stock. That’s what I found from googling, anyway. Since I’d be restarting I’d likely start off on the lowest, 18mg, and work up.
It’s been a pain in the arse trying to contact the GP about my meds anyway, and this shortage isn’t helping matters!

Edited

Thank you SO much for this info. I rang my pharmacy just now and they said that they can get Concerta, which I'd not heard of before (no expert on this, always taken Elvanse and it works for me so not looked into other options). Pharmacist said it is very similar just slow release so could be a Godsend. Now on hold to psychiatrist to see if I can get them to prescribe that instead as a stopgap. This could save me!!!!

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Original poster
Nepmarthiturn · 30/10/2023 11:56

And yes total pain trying to get anybody to do anything. It will actually be much easier for me when they transfer prescribing this over to my GP but it's taken them aaaages to get the dose right (so even more frustrating for it to now be messed with due to this shortage!). But GP for all my other prescriptions, I order repeats online and they send them electronically to the pharmacy who then deliver them. The psychiatrist is terrible. No repeats, so have to call each time. They only do paper prescriptions and often the doctor who needs to do it isn't onsite so that process takes 3-4 days until it's available to collect. I am so unwell I often can't leave the house so then I have to get someone else to pick it up for me and take it to the pharmacy. And then even before this shortage they often don't have it in stock, so it takes another week or so to be delivered to me. Often they "forget" to order it so I have to call them at least once to ask where it is before it turns up.

It's a controlled drug so they will only prescribe one month at a time, so with all of that ^ I spend two weeks per month having to chase people to get the monthly prescription, every month. Totally crackers when they are meant to be treating someone for ADHD! I have told them it is the equivalent of putting the medication someone in a wheelchair needs on a very high shelf and saying "go on, stand up and get it!". And their response to this supply shortage was "you can try phoning all the pharmacies in the area to see if they have any." Ummmm... hello? I have ADHD, how am I meant to take on yet another task like that when I'm already so overwhelmed? And I have autism and hate^ speaking on the phone. Sometimes it does feel like you are being gaslit, but the very people supposedly treating you actually exacerbating your issues as much as possible.

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TheShellBeach · 30/10/2023 12:01

OMG what a palaver.
I'd go mad if I had to do that.

I'm currently having to chase monthly prescriptions for HRT (instead of three-monthly) which isn't such a nuisance as it's only the GP, not a generally unobtainable psychiatrist.

I'm sorry for you. I felt severely anxious just reading your post about it.

TheShellBeach · 30/10/2023 12:06

Meanwhile, in other news, my horrible ex has thrown our autistic son out, giving him till Nov 14th to move.

DH and I are trying to find him a flat in our village.

DS has applied to the council, but Nov 14th?
Who does that to their own child? DS is 28 with AuDHD and PDA and he's never had a job. He's vulnerable.

Tearing our hair out here.

Original poster
Nepmarthiturn · 30/10/2023 12:15

Uuugh, it must be awful having to manage without HRT, too. I don't think they realise either the extreme additional anxiety stuff like this causes to people who are autistic: not knowing what will happen or when it will be resolved and the impenetrable and illogical systems. And the more extreme effects withdrawal/ medication changes can have on us because it's well-documented that autistic people are often more sensitive to medications.

They are now refusing to prescribe the alternative and being dismissive. Not speaking to me directly of course though, just passing messages through their receptionist, poor woman.

And this kind of stuff takes up hours every day. Every single public service is like this: social services, CAMHS, the Council, schools... 😡😡😡

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Original poster
Nepmarthiturn · 30/10/2023 12:17

TheShellBeach · 30/10/2023 12:06

Meanwhile, in other news, my horrible ex has thrown our autistic son out, giving him till Nov 14th to move.

DH and I are trying to find him a flat in our village.

DS has applied to the council, but Nov 14th?
Who does that to their own child? DS is 28 with AuDHD and PDA and he's never had a job. He's vulnerable.

Tearing our hair out here.

Oh my God that's horrendous! I'm so sorry. I take it you don't have space for him? What an horrendous thing to do to him. My parents did this to me as a teenager and I had to private rent and live alone. It's unforgiveable. Why on Earth would he do that to him? 😭

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TheShellBeach · 30/10/2023 13:50

Nepmarthiturn · 30/10/2023 12:17

Oh my God that's horrendous! I'm so sorry. I take it you don't have space for him? What an horrendous thing to do to him. My parents did this to me as a teenager and I had to private rent and live alone. It's unforgiveable. Why on Earth would he do that to him? 😭

Show quote history

Ex H is a vile excuse for a human being.

DH and I live in a little bungalow.
I am just flabbergasted that a parent could throw his vulnerable son out like this.

We're going to view a flat in a day or two. Just waiting for the owner to get back to us.

DS would like to live in our little village. And he'd very much like his own place.

He's so worried about bumping into his dad in the house they live in that he doesn't eat properly.

toffee1000 · 30/10/2023 13:51

Nepmarthiturn · 30/10/2023 11:40

Thank you SO much for this info. I rang my pharmacy just now and they said that they can get Concerta, which I'd not heard of before (no expert on this, always taken Elvanse and it works for me so not looked into other options). Pharmacist said it is very similar just slow release so could be a Godsend. Now on hold to psychiatrist to see if I can get them to prescribe that instead as a stopgap. This could save me!!!!

Show quote history

Ooh, I really hope it helps! That’s great if you’re able to use it as a stop gap if it works.

Original poster
Nepmarthiturn · 30/10/2023 14:16

@TheShellBeach that is awful. He must be being utterly horrible to him if he's worried to eat for fear of seeing him. What a bully. And to his own son. 😔😡

It's unfathomable how anybody could behave like that to their child, let alone one so vulnerable.

I hope it goes well with the flat. It would be lovely to have him close by I am sure, especially after all of this. He will need you more than ever. It was so sweet how he cared for Linned when you were away. ❤️

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Original poster
Nepmarthiturn · 30/10/2023 14:17

Linney!

My typing has been even more horrendous than usual lately!

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