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.

That's really rubbish about the census BlackeyedSusan, I hope you managed to sort something out. I just left DH to do it, I don't get on well with forms and questions, if it's a straight forward question like name, age etc fine but I get all caught up with questions that might not have a single answer. I don't actually know what's on the census but for example the ASD screening questionnaires really annoy me(I do them frequently due to taking part in a lot of autism research), the questions like would you rather go to a party or a library...neither, I have no interest in going to either of them. When I was first filling one of them in before my assessment DH had to help me and explain that it's trying to figure out if you would rather go to a noisy, lively/social environment or a quiet, calm one. I kept repeating that I wouldn't go to either as I don't want to go to either, obviously missing the point. In the end I selected library as the least irritating option but then I attached (extensive) notes as to why I HAD to choose that option (and the same with the other questions) when neither option was what I would do.

I was researching uni again yesterday, I'm 90% sure I'm going to go for it, but then I realised I don't have my GCSE certificates, I don't remember packing them when I moved in with DH. So my mum is getting her partner to look in the attic over the weekend to see if they are in there. I hope so because reading up about how to get replacements involves contacting the exam boards and if you don't know the boards you contact your old school...except my old school closed and was demolished about a decade ago.

would you rather go to a party or a library
I find those vague descriptions difficult along with questions of general socialising etc - I really overthink what counts. To me a party could easily be a group of a few mates at someone’s house playing board games with a takeaway - my idea of heaven. I am VERY social - with the right people, in the right circumstances. I’d rather have lunch in a quiet pub with a couple of friends than a big group on a Saturday night when there’s loud music and you can barely hear each other speak - does that make me less social? Or am I simply not fitting in with what society tells us “normal people” do?

That’s very frustrating about the exam certificates. I’ve started worrying about mine too since I may be job hunting soon.

I have an online workshop for parents today about autism and sensory issues. TBH I am not expecting to learn much - even when we had the DC assessed for multiple things in 2019 they were impressed with how much we already knew. However it was suggested by CAMHS that we do stuff like this and things can be tough with them if you aren’t seen to be engaging with the service, so it’s worth the fiver, and it may well be really interesting and useful, I’m certainly not an expert. I’ve booked another one next week about anxiety. Will have major zoom fatigue as my training for the volunteer role is 3 hour sessions each week!

I finished my pip form though. Sent it yesterday. Trying not to worry about it as it’s not like I can control who reads it and what they decide, just proud I actually got it done and sent off on time! I’ve been quite unwell lately so in a way that was helpful as it was easier to describe how much help I need. In the better phases I tend to block it out.

SingToTheSky - We had to go on a sensory processing course for parents before CAMHS would refer DD to OT, it was so boring and we learned nothing new, although for people who are unaware of sensory issues it would probably have been useful. DD OT report says she has a significant and specific sensory profile and that she's very sensitive to sound and tactile sensation and requires significant movement to regulate herself...you know everything I was telling them.

Well done on getting your pip form done, I have a tribunal coming up next month. I was on dla but then was meant to move to pip about 2 years ago and have been battling them ever since. They have used everything possible to make out I don't struggle, even saying I "achieved gcse's" ffs. I responded by stating how struggling with day to day living such as needing DH to remind me to eat and he has to cook because of several accidents I've had in the kitchen has absolutely nothing to do with my intelligence level and that they clearly did not understand autism, executive dysfunction etc, I hate them so much!

It’s an awful process. I was mainly applying for my physical conditions anyway but I got no points for the autism (and what I now know is ADHD) related stuff. I didn’t battle it because the points wouldn’t have made a difference to the levels IYSWIM.

This time where I’ve put about forgetting to eat etc I’ve not specified why (although TBF it’s partly brain fog related anyway)

Even in the diagnostic process I’ve heard things like exam results used as a reason someone couldn’t possibly be autistic/ADHD. It’s batshit. 🤬

I had to put in a complaint about a paed consultant who stated that dc could not possibly be autistic as she did not have learning difficulties. in from of my already diagnosed autistic son. who them spent several months worrying that he had learning difficulties. fucking arrogant twat.

well done on doing the form.

had a reply from the census.... make a phone call. ffs. I have put in a complaint that I have a communication disability and I still can't access the form.

That’s so awful on both counts susan!

I just did that training session. Was a waste of time/money (only a fiver but still) - it wasn’t bad, but it was very much preaching to the choir, I honestly could’ve run the session myself (did actually make me think that’s something I could look into as a job in future...) as it was stuff I knew already. 😬

DD is really irritating me, without going into too much detail she has exams all of this week (except they are not exams, they are "assessments" because exams are cancelled!) and she's really struggling with the stress/pressure. Now rather than admitting to her support worker that she is finding it hard she makes up the most ridiculous lie that meant she had to be rushed to the school nurse, I had a safeguarding phone call with them really pushing to refer her to other services. Long story short they realised she was lying, but she is keeping up the pretence that she didn't lie it's everybody else, it's her support worker, the other staff, the school nurse, everybody else is lying and she never said the thing that prompted an immediate reaction and health/safety intervention. She has more exams today so I'm sitting next to my phone full of anxiety expecting another phone call

Yeah, apparently a lot of teachers lie at DC's school too.

That sounds really tough azpie :(

I’ve just done my second training session. It was good but I am absolutely shattered mentally (and thus physically as I’ve been quite tense).

We were mainly discussing communication skills and we had to do an exercise with secret missions to demonstrate bad communication. Mine was to constantly interrupt my partner while they talked. As I explained after, I am really paranoid about interrupting because it’s such a big “thing” that autistic/adhd people always interrupt. So it felt horrible and rude but thankfully my partner said she could tell quickly what my mission was because she could see I was uncomfortable talking over her 😂

I felt quite tense for the session though as I do try and participate in the group session a lot but I do get anxious talking in front of lots of people (8 others) and especially over zoom I couldn’t see everyone on the gallery view so it was uncomfortable talking about stuff without being able to see half of them reacting.

In a few weeks we all need to share our parent journeys (through getting our DCs diagnosed as that’s the purpose of the mentor scheme) - we are allowed up to half an hour each for this 😱 scary. I’m also not sure how I’ll navigate explaining that my parent journey actually starts with me - I realised about myself first and was already diagnosed by the time my kids were seen. So I want to include that but I’m also a bit paranoid about what people will think (the trainers do know I’m autistic though)

Thought I'd say hi as I haven't posted on this thread before. I'm nearly 50 & currently awaiting assessment for ASD & ADHD. Both my DC are diagnosed ASD & they definitely share my traits. I guess its finally time, now they're older, for me to get my own diagnosis runner stamped & attempt some form of a life before its too late. I'd love to do some more education & or get a job, but currently its a non-starter, so I'm hoping to do a trial of ADHD meds, which will, fingers crossed, help me!

I found my letters today from the NHS assessment centres, which when I received them said 20 months for ADHD & 16 months for ASD. This works out as around August this year for both, but of course, covid happened. I know many places are now assessing online. Does this mean that the waiting time won't have moved too much? I honestly feel I've waited long enough now. Does anyone have any idea? I'm in the south east btw.

that sounds awful sky... glad I am not doing it.

Argh for some reason MN isn’t displaying correctly and the change is throwing me off 😳😂

Susan it certainly threw me off. I was basically useless for the rest of yesterday 😳

Hi FYC sorry it’s been delayed so much, that’s very frustrating. I have heard of some trusts doing their assessments over zoom which should at least make the waiting list shrink a bit now even if slower due to the time it took to get it set up. It would be worth ringing if you can face it 💐

I had my job centre phone call yesterday, I’d been so nervous but it was actually really good. I was correct that it’s because I now have to look for work since my youngest is 3 (she’s actually 3y5m but I’m guessing covid delayed this too!). However my jobcentre coach is actually SO lovely. Totally understanding about my health worries and isn’t going to push me to try anything that would be harmful (eg retail). Just taking things slow now so my official targets are studying related for the longer term but she’s going to look into suitable part time jobs and free qualifications etc.

I feel positive but also quite freaked out at the thought of such a massive change TBH. Not having a clue what kind of work I’ll end up with and where. It was different when I was looking for work last time - the place I was second choice for and the place I actually ended up working in were both places I knew really well and knew some staff etc - a children’s centre and a library. A random office I’ve never set foot in feels very different and scary.

I’ve managed to have a fuck you ADHD day so far - got lots of little admin tasks done, it was just one of those mornings where I felt capable. I think this means the Elvanse is working.

One of the main things I did was start writing my OU disability application, I’ve written down what adjustments I need. TBH though it’s mostly understanding that I need - eg that I’ll struggle with eye contact more (mainly online) so I’m not being rude/disengaged if I’m not looking at the tutor.

hmm, now you mention it, I do spend rather more time looking at the vicars shoes than her face...

adding insult to injury. had a bloody letter reminding me to fdill in teh census... after I have spent a week trying to ge t the bloody census to fill the fucking thing in. I was mightily pissed off.

I hope people don't mind if I join. I think I might have ASD although obviously can't be sure, it was reading about the sings of it in Women that really gave me a heads up. I was always searching during my 20s for what was "wrong" with me. For the longest time I thought I had avoidant personality disorder, tbh maybe I do have that since I'm so avoidant, now (im almost 40) I would never put myself forward for diagnosis. Been dismissed/patronised and made to utterly worthless by health care practitioners too often. I'm pretty phobic of any authority figures.

Two of my kids seem to me to be not nt. Dd is suffering gender dysphoria and ds1 is not quite nt, although he at least has had scant assessment and deemed not serious enough for follow up. Ds2 seems nt and good to go, poor lad,

Hi selkie welcome!

Susan that is so shit re census 🤬

I’ve been totally overwhelmed the last few days dealing with stuff for DD1

I’ve been working on my presentation for the training thing. I went through some old threads (to try and get a better sense of the timeline through suspecting, diagnosis etc) which was nice in some ways but horrible in others, looking back at all the struggles etc.

But a new friend has offered to go through it with me when it’s done so I can practise which is great!

Struggling a bit today. Finally had SW visit for DD1 yesterday and I’m still not much clearer about the process, so all these unknowns are stressing me out as well as trying to field a million questions from DD1 about it and help her with the anxiety (and anger as they’ve let her down twice already in the last week) - I feel bombarded TBH.

Then tomorrow we have a family garden visit. I am excited to see them but I’ve been so isolated and I’m dreading seeing anyone because I’ll be overwhelmed and haven’t a clue what to say

Also DH is working again today, he’s been doing some charity stuff all week and it was just 3-6ish in the evening but today it’s all day and the change has really thrown me, I don’t feel like I can handle anything!

Oh no sing. Take it easy and just do what is essential.

Hi selkie. Do join in.

How is everyone doing?

Hi everyone. Hope Easter was good.

I spent the weekend hyper-focusing doing some research on private assessments as I fear that due to covid I may have another year or 2 to wait. I think I've waited far too long as it is. I want to get started & make an attempt at having a real life.

Can anyone recommend a reasonably priced place who are good with womens presentation where I can get assessed for ASD & ADHD? It is also important that they will pass over care completely to the NHS for the purposes of medication & won't require me to check in with them every 6 months as some tend to do.

Hi corona I haven’t used them myself but on various adhd groups I’m on, everyone talks highly of Psychiatry U.K. - and they can be accessed via Right to Choose. I gather there is a form you fill in for the GP and they refer you which can even mean you don’t need to pay either, and then it gets taken over by the GP for meds. They do autism assessments too. Not sure how it works with reviews later on for meds as the GP can’t do that for ADHD.

Hey susan :) not quite sure how I am today, yesterday was decent and I got a bit done. Easter Sunday was horrific - total meltdown, I was so angry for most of the day :( I hate my brain.

Lots of admin tasks building up again so hopefully I can sort some today.

How are you?

Hi all,

I hope you’re well, checking in with you all. Life plods on here. Having to change my adhd meds as the first lot gave me awful side effects.