Neurodiversity support thread for women with suspected, diagnosed or self-diagnosed autism, ADHD and other NDs #19

[Galvantula]

Hope it's ok to start one without Polter

Previous thread: www.mumsnet.com/Talk/mumsnetters_with_sn/2954319-Neurodiversity-support-thread-for-women-with-suspected-diagnosed-or-self-diagnosed-autism-ADHD-and-other-NDs-18

The last one filled up a little while ago, hope everyone is doing ok.

Hello, please may I join?
I have dyspraxia, diagnosed last year through university. I found it quite overwhelming at first but I'm coming to terms with it now and knowing definitely helps.

@BertieBotts , hope you don't mind me @ ing you in a random thread, but you shared the below page in an old thread, which I just had a read of. The description box is very reflective of what's happening and has happened in my life. :(

www.guidelinesinpractice.co.uk/neurology-/practical-implementation-tips-adhd-in-adults/453652.article

I'm still waiting for an adult ADHD assessment appointment, but all NHS new patient assessments have stopped during the pandemic.

Really feel like going private if i can to try and get somewhere. Realising how crap i am every day is very tiring. It's making me a crap mum and wife and daughter and employee. 🙈

I have just paid my car tax... been trying to remember all month. just in time. not many people will realise what a win that is...

I cleaned the fish tank yesterday, and paid a small bill. Again, having to really force myself to remember and then force myself to just do it.

fish tank cleaning is not on my list of favourite things... thankfully it is ex's responsibility. Well done for getting it done.

I don't think people realise how hard just daily living can be for some people... for all...

Hi everyone. I'm also waiting for an ADHD assessment. I've done the first 2 questionnaires and got a referral for October. So worried about my newish job in the meantime - I'm not sure I'm even capable of the job that lockdown has turned it into. Totally relate to how tiring it is to constantly be crap at these everyday things.

Oops I forgot to come back and say that I went for a private ADHD assessment about a week ago and have been told that I meet the criteria to be diagnosed with ADHD (primarily inattentive presentation).

The waiting was stressing me out. I'm now due to speak to a nurse prescriber soon to see about trying medication.

I'm also going to try and get some counselling or something to try and work on not hating myself so much when i mess up.

Still kind of processing all this, but also keen to get started on working on helpful strategies. I wish I'd had the patience to wait for NHS diagnosis, but it was just constantly in my mind and I was obsessively checking the mail for an appointment letter.

Good luck with the job @Gwenavyne.

Thanks @Galvantula! That's great news about your assessment. Now you can get started on everything that might help I hope you post more about how it goes. I thought my wait was long but ot sounds like 3 months is a lot shorter than some other areas.

NC as I think I posted something outing on another forum.

Galvantula do you mind me asking the rough cost of an ADHD private assessment? I am awaiting an NHS autism assessment, but have been told it's a very long wait. I've looked at going private for that, but I'm pretty sure I also have ADHD, so I'm not sure if I can have both assessments done together, or would need separate specialists to do them. I think it's around £3000 for an autism assessment in London, and I definitely can't afford twice that for a separate ADHD assessment as well.

I feel like until I have a diagnosis for both I'm really struggling with life and working out how to move on, and some people in my life just seem to think I've got to middle age without a diagnosis, so obviously I'm coping! I really am not coping, as I've had lots of MH issues, and finally I feel like I'm within touching distance of making sense of my life, but I'm not sure how I'd choose if I can only afford one private assessment. Maybe it's better to wait and have both done on the NHS rather than just have half of the picture to come to terms with and then a long wait.

Autism - the more I read I can see how this has massively affected every aspect of my life so it seems like the main thing I need to come to terms with, but there's no NHS counselling or support of any kind in my area, so the advantage of a diagnosis would just be to confirm what I know, which is still very important for me and would stop other people dismissing me because I'm good at appearing normal.

ADHD has affected more specific areas of my life (very big areas, like work and education), but potentially there are drug treatments I could try which could make a difference, so maybe I should pay for a diagnosis to speed up acess to treatment?

Sorry, not really expecting anyone to give me answers, I'm just offloading my thoughts, but if anyone does have experience of being diagnosed for both, I'd be interested to hear your thoughts.

Hello, just a quick reply as I'm at work. 😬

My assessment was with Psychiatry UK. Initial assessment is £360. (Ouch) I will have more to pay for prescription, titration onto correct drug/dose and if I have a follow up appointment.

I was just feeling a bit desperate to do something, so have used some savings that I had.

They have all their prices on the website to see up front. The psychiatrist was nice and the video call not too weird!

Thanks Galvantula. That's actually much cheaper than I thought, certainly compared to an autism assessment. I am seriously considering doing both privately if I can get the money together. I just want to get it over and done with and not have the stress of waiting years for NHS assessments.

I'll let you know what happens. I actually contacted them today as I haven't had an update yet. It said they'll send out a letter/next steps within 5 working days. I'm not sure if they meant literally post it, but there's nothing when I log onto the online portal.

In terms of the medication, it depends how quickly my GP surgery respond to the request for my medical record summary, which is required before prescribing.

Still feels like I am waiting, but hopefully not another 6 months

Thanks, I hope you hear from them soon, and hope the medication/treatment will help.

Hello, I hope it's ok to bump this thread as I've been reading it on and off for a few days and trying to process what people are posting. So, I think I am on the autism spectrum. I've known forever that something is "different" about me and about how I process stuff. I could write an essay about it but TL:DR I keep doing the autism online questionnaires and they always come back saying it's a strong possibility that I have autism or Aspergers. Tbh, I don't really get the difference between the two. I can't afford £2k for a private test but I do think I would benefit from a diagnosis as my work is really starting to suffer, especially due to lockdown. I've seen the YouTube video mentioned (was it this thread or another?) from the lovely lady who has autism and I really felt like it resonated with me. And there was another post about itchy labels in clothes! Not that that is a diagnosis of course! I really want to talk to my DP about it but I don't know where to start.

Hi LetGo. I really struggled to talk about autism with my family too, though mostly they weren't surprised. If the Youtube video rang a lot of bells for you, could you watch it with your dp as a starting point?

Re the diagnosis, you can ask for this on the NHS - I'm on a waiting list, which was already about 2 years before the COVID crisis, but the is likely to be much longer now, but I'm lucky I think I can scrape together funds to go private, just trying to work out what to do about ADHD diagnosis too.

First step to getting a diagnosis is your GP - take online test results and ask to be referred for assessment - you are entitled to this. It might be a long wait, but at least you'll be in the system.

Re aspergers/autism, my understanding is that aspergers is no longer an official diagnosis - anyone on the autistic spectrum being assessed now would be described as having 'autistic spectrum disorder (ASD)'. Aspergers used to be a separate diagnosis given to so-called 'high functioning' autistic people, so a lot of people already diagnosed will still describe themselves as having Aspergers.

But I'm new to all this too, so hopefully others will correct me or add things I've missed.

@Lightyearspast

Hi LetGo. I really struggled to talk about autism with my family too, though mostly they weren't surprised. If the Youtube video rang a lot of bells for you, could you watch it with your dp as a starting point?

Re the diagnosis, you can ask for this on the NHS - I'm on a waiting list, which was already about 2 years before the COVID crisis, but the is likely to be much longer now, but I'm lucky I think I can scrape together funds to go private, just trying to work out what to do about ADHD diagnosis too.

First step to getting a diagnosis is your GP - take online test results and ask to be referred for assessment - you are entitled to this. It might be a long wait, but at least you'll be in the system.

Re aspergers/autism, my understanding is that aspergers is no longer an official diagnosis - anyone on the autistic spectrum being assessed now would be described as having 'autistic spectrum disorder (ASD)'. Aspergers used to be a separate diagnosis given to so-called 'high functioning' autistic people, so a lot of people already diagnosed will still describe themselves as having Aspergers.

But I'm new to all this too, so hopefully others will correct me or add things I've missed.

Thanks Lightyears for your reply. I was going to talk to DP about it today but I just can't. I'm so shut down (is this an autism thing?) that I just can't talk about it. I've been so aware today that I'm buzzing around as normal with my normal cloak on. It's not me though, it's just a cloak. Does this make sense?

Yes! That makes total sense to me. It took me months to talk to dh and in the end I just blurted it out without thinking. I find it ridiculously hard to talk to people, even close people if I can't predict how it's going to go or how they might respond.

Hi ,may I join ...2 dc with asd ,2 parents with asd ..just putting of the inevitable that I need to do ..

I’m stuck in a bit of negative behaviour..I get very stressed about having the right clothes ,I’m 47 and dress like I’m 14 ..but I can’t just buy one of anything,I buy 3 identical outfits and have one in the wash ,one drying one wearing ...so you can imagine I have a lot of clothes ..I have a subscription where I get free delivery and returns on clothes ,I have a parcel arrive single day ,and I send one back every single day ..I’ve been like this since I managed to stop my bulimia.so I know it’s a coping mechanism,but I can’t change my behaviour...any ideas?.

Does anyone else have endo? My symptoms are bad pain and constipation. I also have open defect spina bifida and dyscalculia too.

Hi gang. I think it's time I joined this thread, really.

I'm pretty sure I have autism (I know lots of people prefer "I am autistic" but I switch between the two, much like my being dyslexic or having dyslexia) based on a bit of research. Honestly, I'm torn about getting a diagnosis. I've started a list of everything that I do that's a possible indicator just for my reference, and I must admit the list is longer than I thought it might be. I worry though that, as there is a lot of misdiagnosis out there, that my list of things is in some way "forcing" a diagnosis of autism. I suppose some sort of... imposter syndrome. I watched "Love on the Spectrum" on Netflix and only a couple of moments from a couple of people "looked like me" and I think it's these moments that make me think "Oh, I'm not like that, so I'm not autistic" etc. Not entirely sure whether a diagnosis would help this or not...

@BlackeyedSusan I have my car tax set up for a direct debit (and they email to remind you it's happening just before) - is that something that might help?

@Veganforlife I'm not sure I understand your post - do you mean every time you buy something you buy three copies? I think it sounds like there a lot of small things bundled up together there to address, if so - there's the fear of not having the clothes you want (this is my interpretation of buying three), there's the routine reliance of one package in one package out a day. Then there's how it makes you feel. I think the "dress like I'm 14" is a red herring. If you're 47 and you're wearing clothes then you're dressing like a 47 year old, in my opinion... bulimia is exceedingly tricky to beat, so 1) well done, and 2) I think there are probably things you did as part of your recovery there that you can use to shift your behaviour with clothes.

I remember watching the Chris Packham documentary where he explained he would buy more than one of a specific top if he liked it. I guess if you have sensory problems to do with clothes, and you find a top you like that doesn’t trigger your issues, then buying more than one might make sense as you know you like it and you’re comfortable in it. Apart from not liking tight clothing, I don’t have major problems with clothes. But I know some people only like to wear certain colours or styles.

Hey everyone, diagnosed today aged 49. Promoted by DD1 ASD diagnosis 2018 aged 12, and years of wondering if I was Bipolar/had early onset dementia/am just a crap lazy selfish human being. Which I might be anyway, but at least I have a reason for the state of my house

Congratulations. Hope it helps to know.

Still waiting here.