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?

This is me. I feel so much better when the phase is healthier rather than “panic panic panic McDonald’s” but it often feels out of my control. I’m wondering about going back to Gousto type meals, which I used to use for my family, esp the 10 minute ones, or even healthy ready meal deliveries. There are a few good ones. Pricier than cooking yourself though.

I’ve been on the McDonald’s one as well 😅 Generally just a McPlant at least! I have to push myself to mix it up because I’m the main cook and it isn’t fair on my husband to be subjected to my phases but it’s hard, sometimes I just don’t feel like eating. Or I’ll make him something and then just have something plain myself. Generally I have a repertoire of about 5 meals on rotation which seems to work ok.

Do you know how they are going to assess you? The frog book is part of the ADOS assessment I think, which is notoriously not great for adult assessment. ADI-R and DISCO are generally better for assessing adults but often not used in the NHS where they still seem to use quite outdated criteria and tools.

(Hi, by the way - I'm late diagnosed AuDHD with two ND boys, I'm a former NHS psychologist, who was actually trained in doing autism assessments before thinking "hang on...there might be a reason why I get on so well with all these patients 😂)

It’s a nhs assessment the letter says a range of assessment tools.

Hello all, old and new 👋. Just popping back in to see what you are all up to. I have been swallowed up with work and DD's mocks. Quite traumatic, thankfully they'll be over by Friday.

BTW if there is a support thread for parents of SEN children doing their GCSEs this year, please point me there. I found last year's but cannot see one for this year - TIA.

Commiserations to all of you who are not getting enough sleep. It's a killer!

Like @MisterPNumber23 , I am also very reluctant to share without having that piece of paper (& knowing 'for sure'). I feel in limbo. Been waiting for an ASD diagnosis for the last 2 years and I'm told I have another 2 years to wait. But I am planning to retrain and it is very relevant to the course. I'm due to start in January and the school is asking about access/disability, etc. I have a lot on and barely keeping afloat. Can see myself struggling but I still don't want to share 😩.

As for Christmas, I am not a fan 😳. I always feel unprepared and always caught out. Not helped by the fact that everyone in this house has December birthdays! I like to get them out of the way before even thinking about Xmas (especially because I don't enjoy it) but it's really not practical.

How chatty is chatty ,when it comes to this thread
because this might just be tmi .. apologies if so ...
We have a new mattress,and all new bedding,and it must of got Mr loobyloo9 all excited, because he didn't leave me alone all night .. constantly wanting to hold me or drape on me ,or touch me ( not sexually, although I'm sure he would given the green light) .
I feel awful
I hate it
I can't sleep being held like some sort of teddy bear ,
I try to push him away and he goes all sulking and says ,I just want to hold my wife ,is that so wrong ..
He's suffocating me ,I'm bad tempered because I'm tired ,I'm menopausal,my shoulder ,hip and knee all have movement problems and I'm not sleeping.
If he just gave me a hug and went to his side of the bed ,I'd be ok .
.but it was all night long ,hes trying to cuddle up to me ,and im trying to move away ,and i end up on the end of the bed .
He doesn't pick up on the fact I don't cuddle him back or I'm trying to move away ,he just grabs me harder .
He swings hot and cold with me ,so his mood can flip from being all over me ,to ice cold and moody in seconds .so that's probably why I keep him at arms length.
But I didn't find out I definitely had autism till last year ,and by then it was to late ,I was already married with children.
I'd never of had a relationship if I knew I was autistic
In fact he is my only relationship ever in 50 years
I wasn't interested,when we met ,I used to hide from him ,he was obsessed with me and he turned up everywhere I went ,and I kept saying no I don't want to go on a date ,but in the end I just gave up and gave in .
That was over 30 years ago .
I feel so angry at my parents for not getting me any help .two suicide attempts in the 1980s ,bulimia ,self harm ..but no camhs in those days so no help.but they were spectacularly shit parents,my counsellor says they were abusive.
I'm not saying I want to leave ,and he's not forcing me to do anything.
I was so close to just screaming at him to fuck of last night ,I was literally seething while he held me ..
how can he not pick up on my fuck of me vibes .

Welcome! I found your post very interesting. Can you go back into work and be my psychologist please? 🤔 😸 From your perspective do you think it’s worthwhile to pursue a private assessment vs NHS? Or is that a loaded question? The cost is putting me off private and the long wait and plus some bad stories are putting me off the NHS. It’s taken me around 2+ years just to come to terms with the possibility of AuDHD and I’m finally approaching the scary prospect of assessment. I honestly think it’s a 99.99% likelihood but I’m still nervous about doing it.

But I am planning to retrain and it is very relevant to the course. I'm due to start in January and the school is asking about access/disability, etc. I have a lot on and barely keeping afloat. Can see myself struggling but I still don't want to share 😩.

I get that totally and I would feel the same, but if you think you will struggle then I think it’s worthwhile saying you have suspected ND and are currently awaiting assessment. In the meantime you would be appreciative of considerations in light of this. What do you think?

From my perspective it’s fine to share whatever is on your mind, and then other people can chime in if they feel they have something to respond with? It may just be cathartic to get it out there in a safe space regardless.

I would feel very claustrophobic if I were you. It would make me scream in my head. I also understand from your husband’s perspective it would feel like rejection, so it’s very tricky. Can you talk with him and say you’re not trying to reject him, but that because of being Autistic you can’t handle that much sensory overwhelm and it isn’t anything to do with him, it’s how your brain is wired? And if he strops then that’s on him but you shouldn’t have to put up with an uncomfortable and stressful environment. Perhaps suggest the middle ground you mentioned, of shorter hugs and cuddle and then have personal space?

Thankyou for replying
I was thinking of the kitchen timer ,like setting that for 10 minutes.
But I know that's not appropriate.
So if I knew when he wanted to cuddle I could prepare for that .and cope with it ,as it would have a start and finish time .
But back in the real world ,who the hell does that ..
But yes it does help having a complain on here ,I nearly started a thread ,but then I thought people won't understand

@Loobyloo9 - that would drive me mad too. I am a big fan of short, sharp, loud rebukes and would likely have put a stop to it straight away, most likely by shouting 'F'off and keep away from me'. My DH is aware of my, shall we say, quirks (and he has a truckload of his own so...)

FWIW, I think the kitchen timer idea is perfecly workable. Maybe most people don't do it? So what? 😉Can you explain to your DH how much it bothers you, as clearly as you have here? I find open and direct communication is the only thing that can put some things accross.

@WakeMeUpForCoffee thank you. I think I may end up needing the odd extension with coursework. But my main worry is over interaction. There's going to be a lot of it and I fear I might find it too intense generally. It is the nature of the course (although thankfully the group woud be small). And lately I have a very small battery and I do need to withdraw often. Menopause is only making it worse (really strugging with that, as is typical in ASD women).

Truth is, I wouldn't even be able to explain all this to the staff, and I'm not sure I want to. I have already posponed the start from September and, in fact, I have been wondering if I should abandon the course altogether. It may not be for me. But it's one of the few things I could realistically do in the future. I hate making decisions!

@WakeMeUpForCoffee thank you!

In terms of private v NHS, it's a difficult one because NHS can be snotty about private diagnosis, which means they may not recognise it, you might not get shared care with your GP and if you're looking at medication for ADHD you'd be stuck paying until you can be assessed in the NHS. One of the things I really didn't agree with was them kind of changing the bar for diagnosis, because they were only allowed in one trust I worked in to diagnose a certain proportion of people who were assessed so they did end up turning down a lot of children who were what used to be called "high functioning" autistic (urrk) because they considered they weren't "impaired" enough by their symptoms to warrant a diagnosis and therefore support. Basically, they didn't have the money so they had to find a way to exclude more kids from support, which sat very poorly with my autistic sense of justice!

I get it up to a point how they are about private dx, because some providers frankly are shysters, but many are also doing a good job and doing it according to NHS standards. Obviously if they're going to offer a diagnosis in 45 mins or something then steer well clear. But if this is something you need for you, then there are decent private services out there like the Owl Centre, Divergence UK, Axia ASD, Neurodiversity Training International (based in NI).

Alternatively if you're in England (not available in other regions) you could look into going through Right to Choose so you'd have your appointment through a private provider that's approved by the NHS to assess, diagnose and prescribe. Waiting times can still be anything from 3 months to 2 years depending who you go with, but it's often a better experience IME. And if your GP refuses shared care, the private provider still prescribes for you for NHS prescription cost.

(This is definitely not a special interest, not at all 😁)

I did manage to have a bit of a chat with Mr loobyloo9,and he said he was very tired and hadn't meant to make me feel uncomfortable.
And last night he kept to his side of the bed .
And I'm not so tired now ,..I'm really not good with a lack of sleep

Doctor referred me today. He was very supportive.

Referral through NHS will be 18 months.

For right to choose I send them details of provider and they refer there.

If private I would get meds and when stable prescription would be taken over by surgery.

So a positive experience overall.

Will now look into right to chose providers and their waiting lists.

I had a 10-minute telephone appointment with my GP last week to discuss having a Right to Choose referral for ADHD. I was expecting to be given lots of questions, but she said that what I'd written in the e-consult was enough, and I just needed to do an online questionnaire via the e-consult system. The referral has now been sent off. 👏(And literally as I'm writing this Harrow Health has sent me an email too!)

I'm having some stress at work. The vague long story short is I'm personally being put at a disadvantage with access to certain workplace facilities, and it turns out that because I'm the only part-time worker with these issues, and female, it could be classed as indirect sex discrimination. I know it's more that people are being lazy and thoughtless, and now my line managers are aware of it they are being pretty decent, but I still think everyone else hates me. 😬DP says the women in his office have the same issues, and it is generally resolved with a lot of swearing on post-it notes, and meetings with HR which makes me feel better.

I've been using the Breathe meditation app for the past few weeks. It's free for a year if you've got an iPhone. The back to sleep, and letting go sessions are really helpful. I've not tried their ADHD session yet.

Harrow Health advertise they have the shortest wait times - do you know what they are @MadameWombat ?

I've gone with ProblemShared and am happy with their 28 weeks, if it's around that. I can live with that wait.

Someone on TikTok did an interview with them a couple of weeks ago and said the wait was still 4-8 weeks. Their email auto response says 12-16 weeks.

Wow, that's quick!!!

Such quick responses - I’m 2 years 3 months waiting now. Had 6 weeks of attempted CBT online via NHS mental health services but spent last 2 or 3 weeks of those sessions doing lots of online ADHD assessment forms because my counsellor/therapist/mental health professional??? said he felt I showed many signs of potential ADHD that we’d best spend our time getting on with investigating that.

That was July/August 2022 and I think they put me on the waiting list officially as of Sept 2022. Plenty of time to doubt myself, dismiss it as nonsense, then think ‘what if it’s right’, ‘I definitely have it’, ‘what’s to be achieved by knowing I have it at nearly 60 years old’ and round and round again. I honestly don’t know where I’m going with it all.

I believe you can use Right to Choose to change your mind and get a quicker appointment?

@Justhelp you can still opt to use Right to Choose (if you're in England) even if you're on a NHS waiting list.

No ‘Right to Choose’ in Scotland unfortunately 😬

I saw this thread but felt too shy to join in, but on reading Loobyloo's post I will butt in to say that the NHS recommends that everyone supplement with vitamin D from October to March (when sunlight in the UK doesn't contain enough UV for our skin to make vitamin D for us). https://www.nhs.uk/conditions/vitamins-and-minerals/vitamin-d/
10 micrograms per day or 70 micrograms per week. When I moved house and joined a different GP, along with the registration forms they gave a leaflet and lecture about how vitamin D is really important for lots of things - like immune system as well as bones, teeth etc. Before that I had no idea that the general population should supplement!

Also we vegans should take vitamin B12. 25 to 100 micrograms per day or 1000 micrograms if taking a weekly dose. (Yes I know that is not 7 x 100; it is to do with how the body absorbs it.)
And people who are eating less to lose weight, might have to plan more carefully to get enough vitamins and minerals into that reduced amount of food, so might want to consider a multivitamin or something.

I'm taking omega 3 capsules as well because I wasn't consistent about getting enough in my diet.

But anyway, Hi! I'm in my early 30s and was diagnosed with autism and inattentive ADHD 3 years ago. (Then found out that various people had suggested I was autistic as a child, but my parents had discounted it because the traits are so standard in my family!)
I've just come to the end of a 10-session course of psycho-education to better understand my diagnosis and am sad that I haven't magically learned a load of wonderfully effective coping strategies. Even though I know logically that would be too much to expect.

@CrazyGoatLady I'm in England but in my NHS trust you are not allowed to change over to RTC if you are already in a waiting list. I believe that's because I live in one of the two that effectively 'closed' their waiting lists until the backlog is cleared (hollow laugh).

I did enquire, but I was told essentially that I was lucky I went on the waiting list a few weeks before they stopped taking new referrals. 2.5 years later, it does not feel so 'lucky'.

Welcome @Bergamotte! Your comments about the traits being standard in your family is a familiar situation.

@stickygotstuck urgh, the things they'll think of to weasel out of assessing people! The state of it all is very grim.