Chatty thread for ND mumsnetters

[whiskeyarmadillo]

I thought I'd try and start a friendly chatty thread here on the ND board. All are welcome. Bring a cuppa.

I'm whiskeyaramadillo. I'm late 40s and AuDHD. I have a ND parent and two ND children - my third DC is NT ish. I work full time and live on the western edge of London but my heart is firmly in the countryside which is where I grew up. I have one black and white cat who is my sunshine although he is in my bad books today after bringing in a mouse.

Today (Sunday) I'm sorting out my very very messy house - again. Making sure homework is done and uniforms are clean. Putting endless pants and socks in drawers. If I'm lucky I'll get to lie on the sofa and continue reading 'Wintering' by Katherine May or watch a bit of a crappy fantasy movie with a giant mug of tea.

What is everyone up to today?

Hi I'm no expert but have some experience of this and many thoughts. It stands for Pathological Demand Avoidance. I believe it's simply called demand avoidance now and is common in autistic individuals. There is a pathological version which one of my siblings has, I believe.

But for most people it's just one of the flavours of their personality and not any more pathological than any other annoying trait (which we all have). And like everything there's a dynamic between the individual with the demand avoidance and the people around them. The pathological ones are doubtless highly traumatised.

My daughter has some DA traits - i noticed from a young age that she understood what she was supposed to do, but didn't want to do it. She's very emotional and can explode. But by god she's lovely and she's doing very well at the mo.

My son (who has autism DX) also rarely did what he was told, but in his case i thought he simply didn't understand what he was suposed to do. However, I now realise he has complex emotions about demands being placed on him too.

I think you're absolutely right knowledge is power. I would perhaps say 'insight is relief' as well. You emotional processes will be individual to you - DA is just another tool, like all labels - but the better you and your DH understand them the easier life will be.

ps thankyou for the recommendations @CanIGetAHighFive

I'm sorry about your day @MarchMiddleton my daughter can be very explosive too and it gets very wearing. They actually calm down in teenage in my experience... touch wood!

Hello everyone, room for one more?
You have no idea how hard it was to type that... Then again, maybe you do! 😁Thanks, RSD.

I have been on the waiting list for ASD assessment for 2 years. Very reluctant to self-identify but apparently there's another 2 years to wait at least, and cannot carry on hiding while I wait.

Truth be told, I'm not feeling too chatty at the moment, I'm afraid, as I think I'm fast heading into burnout, mostly induced by a variety of issues with my diagnosed ASD teen who is herself getting there fast (again), bless her. So I'm feeling powerless and like a terrible mother. It's like the blind leading the blind in this house!

@WakeMeUpForCoffee - about PDA, my understanding is that comon garden autistic DA is not quite the same as the pathological type. A young autistic relative has actual PDA and it's a right bastard. Everything feels like a demand to him and for a couple of years his automatic reaction has been swearing and violence, against objects, himself, and others, followed by all the self-loathing. He's very young and pretty much house bound. His mother gets annoyed when people conflate the two types, and I can see why.

Welcome @stickygotstuck Of course you are welcome and anyone else too to this pack of zebras 🦓🦓🦓 (in honour of @almondmilk123 ). Without looking it up, is a group of zebras called a pack? 🤔 And yes I think we all understand RSD too well, it’s fun 🤪

I’ve been reading up on PDA and it’s like looking into a mirror, but mine is the internal type. Everything feels like a demand, including things I enjoy. It takes tremendous effort for me to try anything new that I know I would enjoy because it feels like a massive obligation, unless I reach absolute boredom and I have no choice. For example, reading a new book in a genre I like. Playing a new video game that everyone says is amazing. And the avoidance strategies are hilarious. Today I needed to take some medication, which I was already 2 hours late taking, and my husband reminded me about it. I said ‘oh, you’re right, ok’, then in my head I thought ‘I’ll just vacuum the house first’. 😹 I’m on terrible sleep for the past week so I have barely any energy but vacuuming the house was preferable to meeting this so-called ‘demand’ of taking my medication. I get very strong anxiety when it’s triggered as well, and yes there’s a lot of self-loathing that comes along with it. Most days if I can get myself ready, make food, and do one household chore then that’s a full day for me. I’ve started keeping a list on my phone of my daily accomplishments as I read that helps with this. I used to make checklists of things I ‘should’ do each day which just ended up as unchecked checklists and feeling more of a failure.

Thank you @WakeMeUpForCoffee !

I'm a lot like that, but I find what I tend to procrastinate about is the sort of thing that takes a lot of mental energy - although at the moment that's just about everything! Right now, calling the school is Level 1 avoidance, followed closely by Level 2 - opening the post!

A list of daily accomplishments sounds way, way better than a 'to do' list!

@WakeMeUpForCoffee , that attention to how it plays out within sounds absolutely the right thing. I'm a terrible advocate of getting support - counselling, reiki, whatever so I would say add that in and you will definitely find new calmer waters.

It also sounds very difficult and tiring. Would you say it is worse for you than for the people around you - they may not always see your struggle? I agree the accomplishments list is a great idea.

@stickygotstuck god yes always room for another perfect zebra (as supposed to flawed horse, which is how the NTs look at the NDs). I had unequivocal burnout for the first time in July this year, and having experienced how it distorts how I saw things, I woudl say likely you are doing a much better job than you think you are. But I recognise that blind-leading-the-blind feeling.

I'm generally having quite a good day today, hope everyone else is well xxx

@almondmilk123 , thanks for the welcome.

Ah, the zebra mystery is now solved. I like it! 🙂

@stickygotstuck That all sounds like alot and very relatable. The burnout stuff is a tricky beast. You need to rest, if you can take time off work. Scale absolutely everything back to the absolute bare bones. Sleep. Shower daily and get dressed. Get into nature every single day, stand underneath the trees, listen to the birds breathe in the outside air- can be at a local park, doesn't have to be far. Let yourself stim, start to unmask, be your most you-est. Do things for the love of doing them, maybe something arty or crafty, something that you do with your hands that is tangible. Listen to your sensory needs and act on them. Start to discover who you are.

I'm trying to do all this at the minute, I've been in burnout since the summer. My GP and work iare both amazing and supportive. I feel like by doing all of the above I am coming out of it, I think by the beginning of December I want to be back at work, albeit phased return.

I'm at the beginning of all this so partially think it's all in my head and I'm not neurodivergent, I keep having to give myself permission that it's all ok. Huge imposter syndrome! I'm going to the GP in a few weeks and will discuss right to choose with him- can you look at that pathway for yourself? 2 years is horrible, the providers on RTC are from 4- 6 months.

I have just bought an indoor seat hammock on a stand for our (highly probable) neurodivergent household. It's a bonkers, totally impulsive purchase and is far too big. I can't get dd3 out of it though🤣 Slightly concerned what my DH will say when he gets home!🫣

@CanIGetAHighFive Slightly concerned what my DH will say when he gets home!🫣

Hopefully he hops on it and thinks it’s the best thing since sliced bread!

@WakeMeUpForCoffee he looked confused but resigned to his fate.

😂

I can picture the look 😹

Went for my flu jab today. Only appointment slot open was 3pm. We live in a VERY popular city so I try to avoid going into the city centre on a weekend past about 2pm, because the revellers are out by 3pm.🙅🏻‍♀️🙅🏻‍♀️🙅🏻‍♀️ Add to this the Christmas market is open and it was so loud and crowded, OMG. I had to slowly wade through the crowds to make my way through. I am now in bed since 7:30pm to recoup, with a snuggled up cat 😸 Hope you’re all having a good weekend!

Hi @WakeMeUpForCoffee .
Sorry to hear of your misadventures during you flu jab trip.
Where do you live that people are going out, out by 3pm!? 😱 Mind you, better 3pm than 3am and waking you up every night like where I used to live. But still!

I had a photo booth-induced meltdown yesterday - don't ask! 😳 I used my break for it and I so wish I hadn't. It was swiftly followed by a shutdown where I couldn't do a stroke of work for the rest of the day. The worst part is, I need to go back because they are wrong sort of photos. Since when do photo booths do more than one type of passport photo??? And breathe...

York and it’s bloody insane with the crowds!!

I had to get some passport photos recently, and that was a misadventure so I get the feeling! The first place I went into was Asda and the ‘Photo Booth’ was not the curtained cubicle I was expecting, nor was it even a booth, it was just out in the open against the wall by the front doors. Like what?! Just stand there being watched by everyone while I awkwardly take the worst possible photos of my life? No way is that happening.

I was in York on Monday. It was heaving at 9am! I'm sure the half-term is not helping. Commiserations 😔.

A boothless photo booth??!! I've heard it all now.

This was was bad enough because it was in the lobby of the shop, next to the automatic doors. They opened every time you moved a foot, every time someone walked passed, every time someone came in or out. And there seemed to be wave after wave of people doing all three. And the bloody thing kept talking at me! No idea what it was saying, couldn't hear a thing. I took some random ones since I had walked all the way there and wasted my break, then and ran away.

I never mentioned but I like your username, somehow satisfying to read.

And yes York is bonkers 🙀 Especially with the Christmas market. Can’t really complain as it’s a lovely city but I could do without all of the hen/stag dos. Plus the races crowd who have been known to wee in people’s letterboxes.

I had to laugh at the ‘and then ran away’ bit 😸 I know the feeling!

Good afternoon
May I join
I was diagnosed autistic last year ,I've 4 adult DC ,two have diagnosis,and two I think slipped under the radar like me ,but time will tell .
After my Autism diagnosis they told me I met the criteria for ADHD ,but I had to be properly diagnosed by NHS ..I was already on the waiting list anyway,so that's hopefully soon...head Is mashed so I'm hopeful ADHD meds will sort me out

I struggle a lot getting out ..I seem to be ok earlier in the day ..but family constraints meant for years I had to be home by 11 am ..and somehow ,even though life has changed and I can get out more ,I'm stuck in that rut ..
Last Christmas was the last time I managed to go out after lunchtime to do some shopping,and I nearly had a panic attack at how busy it was ...and I think that was the final nail in the coffin for me for heading out later in the day
The awful thing is ,I don't even mind any more ,it's just normal,I don't even know if I want to change ..I'm currently having CBT ,but it's all talk of putting a blanket over a parrot,and ships with containers that I need to balance for next time ..

Im on that ,I can take up to 3 a day ,or none a day depending on how I feel.
It doesn't help me get out of the house ...it's not that good ...
But it keeps me calm enough to function if I get stressed and upset .
I don't think I could manage without it tbh

Hi @Loobyloo9 Welcome! I never bothered with CBT, I think if I was told that business about parrots and ships with containers my brain would simply stop listening. I’ve heard CBT works for some autistic people and not at all for others, no idea! I once tired talking therapy and that was pointless for me…

I take Propranolol faithfully 3x daily, as soon as it starts wearing off I can feel the anxiety creeping back into my chest. It dampens it and makes it manageable, but up to a point. Today in town while shopping a fight nearly broke out right next to me, two men. It really shocked me, the sudden yelling and violence literally right next to me. Thankfully they were calmed down by another man but after that my husband noticed I was doing my self-soothing movements more obviously (I run my thumbnail along the tip of my index finger) and I had my hand held up to my shoulder this time whereas normally I have my arm down so it isn’t obvious.

I've never considered taking them every day ,3 times a day ..I just tend to wait until I feel overwhelmed and panicked,and then I remember to take one ..
No one said I couldn't take 3 everyday ,it just didn't occur to me .
Glad that it works for you ..yes a fight would of really upset me to .
I'm on blood pressure meds,so I think at the back of my mind I worry my blood pressure would drop to low if I took them all day .
I only realised through having my diagnosis and all that time being diagnosed and talking about myself,that ... hunger , anxiety and stomach ache all feel the same to me ,I've never been able to work out which was which .
They also said they thought I had alexithima,which made a lot of sense when I looked it up .
Having my diagnosis has given me so much peace and contentment,in a way I never expected.. having spent my whole life thinking I had mental health problems,to find that actually I don't ,has been good for me ,the 3 year NHS waiting for assessment,was needed for me to mentally get my head round it ,so it didn't come as a shock when I got diagnosed.and was able to accept it .
Sorry waffle...

I had to provide pulse and BP readings before they would prescribe it to me for 3x a day long-term use. I have naturally low BP so I do have to be careful. I find if I make sure to stay really hydrated with electrolyte tablets then it keeps my BP up enough that I don’t get dizzy spells / fatigue etc. I have an at-home BP monitor to keep an eye on things. In an ideal world I would prefer not to be on blockers because of this but it’s worth it to be able to feel somewhat normal day to day. Prior I would get panic attacks and my heart rate would regularly spike into the 120s from pure anxiety.

I’m really pleased you have found peace of mind. It’s easy for us to beat ourselves up over our ‘issues’ but this helps us to have self-compassion. It also took me around 2-3 years to come to terms with being autistic. I had watched a show about autistic women, just purely coincidentally, and one of them really reminded me of me. Then I started reading about ways that it presents in women and it was like 🤯 All my life I thought I was just broken and something was wrong with me. Let us know what happens when you find out about the ADHD assessment? I’m undecided on whether to be assessed or not, other than meds might be useful so that’s a driving force. It takes a lot for me to get the ball rolling though. My siblings both have ADHD though so it’s pretty likely, I just haven’t fully accepted it yet.

My kids got diagnosed,and my eldest has high support needs ,but younger one didn't.so various relatives couldn't accept the younger ones diagnosis..I remember explaining to my mum all his problems at school ,that made the school think the youngest was autistic
And she said ...but you were exactly the same when you were at school ,and you haven't got autism...that was the lightbulb moment for me ..
I spent the next few years back and forward to doctors trying more antidepressants,then one day my doctor suggested I get assessed for autism and ADHD ,and I remembered my mum's words ...I sort of guessed then ,and the 3 year wait for assessment was great to get my head round it .I knew I was getting a diagnosis,and they actually told me after ,thay they knew i was autistic before they met mev,from the information they had.
I've not even read anything on autism since I was diagnosed,I just lost interest over night ..it was like ,oh well that's that box ticked ,time to move on ..

Well today I've been to he GP for a catch up, he's pleased I'm doing well and I've given him the stuff for autism and ADHD right to choose. Also figured out when I can go back to work, which is relief. Feels good that I've got it finally out of my head. Chosen Dr J as they have a reasonably short wait for both and can titrate and prescribe, if I want meds, if I need them.