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.

Ahhhhh back to school bedlam. It was lovely driving when it was just a few kids in. One driver has nearly driven into a pedestrian, parked up on the kerb on a corner on double yellows, then attempted to do a three point turn in the entrance of a road.

Distressing!

I've now been off my meds for 8 weeks and I don't know if it's pregnancy or the meds really did work but I'm starting to feel crappy again - I could NOT make myself go to bed at a normal time last night. I am really struggling to motivate myself to do anything useful/productive. DS2 is now sleeping through (OMG!!) yet I still can't wake up in the mornings I didn't really feel awake until about midday today. That was with coffee, a slow wake up and a full night's sleep (well, I suppose only 5.5 hours or so - oops - should def go to bed earlier.)

On the plus side - DS2 is settling in well at nursery and I have a couple of hours to myself every morning (yay!) if I can actually wake up enough to do anything with them.

If he starts going full time I have three online courses I want to take, plus a blog to work on, some freelance work I'm doing and three job applications :o not much then! I'm hoping that's enough variety that I'll stick with one of the six tasks, and not get sidetracked. Hmm.

bloody hell bertie, that is loads.

Yes it might be a bit much D:

:o sounds good though. Hope it all works out! Sorry you feel crap.

I feel like that’s the sort of thing I need - lots of different things to keep me going. I have a sort of autism work coach (we just chat every now and then though as I’m not actively job seeking yet due to health) and together we came to the conclusion that for me, having a sort of piecemeal approach to work might be best for now. Volunteering and then working in a few different very part time roles. This makes sense as it will help me get lots of experience within the field I want (basically therapy/counselling but not sure exactly how or with whom) and stop me getting bored.

My first volunteer role is going to end up being an hour or two a week, training is a bit more and starts next week! I’m excited and it feels like the first step. I also just finished my second course with adult ed so I can start another ASAP. Also must phone OU today.

Susan sorry you had a chaotic school run 😭

Toffee I found the anxiety built up badly in the end with methylphenidate, although for the most part I had a different brand. Is Strattera an option as a non stimulant? I’m finding 40mg of Elvanse better than 30mg but it’s early days yet.

In other news the dreaded PIP renewal form arrived yesterday and I spent the entire day in a total shutdown. I can’t face it. My conditions (the physical ones) are so variable and I overthink everything, if it weren’t for the fact we’d be screwed financially I wouldn’t bother. Also my ADHD diagnosis came after the last application and I’m not sure if it’ll affect anything. It’s all just making me want to cry and hide!

My counsellor did mention Strattera at one point. I’ll mention it during my next session.

So stressed, I hate DD's school! DD is on the spectrum as well and has really bad school anxiety, she can't manage to go into over half her lessons because of it. Now that she's in year 11 and with exams being cancelled the school have basically left her to it rather than trying to help her. So she sits in the SEN department for half the school day (sometimes all day depending on which lessons she's meant to have) with nothing to do unless I set work for her. She's also self-harming again because she's so stressed over what's going to happen with her GCSE's, she's borderline with one of her subjects but it means if she doesn't quite get a 4 then she can't do one of the subjects she's chosen at college (because of the minimum entry requirements). All of the communication coming from school is about how their teachers will help them with the upcoming tests and to keep going to lessons where they will go over what they need to do/prepare for and it will all be fine etc....except DD can't do that and nobody (except her support officer) cares.

I ended up having a massive meltdown on Tuesday because of everything with DD's school. I think because I'm trying to battle them over supporting her properly as well as having to support her over the phone/text. She messaged me whilst sat in SEND about an hour ago to say her teacher didn't turn up to the live lesson again (some of her teachers agreed to continue remote learning for her) so then I had to quickly message her support worker, and her teacher to try and find out what was happening as well as try and find her something to do online (like seneca or oak). This happens multiple times a day and it just all got to me on Tuesday along with some other stuff.

I've also developed a weird anxiety about the tyres on my car(again), it felt really bumpy/noisy when I was driving around so checked if they had enough air and the front 2 didn't so filled them up. Ever since when I'm driving around I feel like it's still too bumpy/noisy and I'm paranoid I'm going to have a blow out or something. Like I can be driving with the radio on, I think I hear a noise, turn the radio off, listen for the noise, no noise, put the radio back on and wonder if it was just part of the song. I end up doing this a few times before giving up and driving in silence which means I can hear every little noise which makes me more paranoid that there is something wrong with my car/tyres. I think I'll take it in to the garage during the Easter break (won't need it as much then) and have them check the tyres, hopefully that will stop me being so anxious as they'll either confirm they are fine or replace any that aren't.

Oh no Az! I really feel for the teens who are having their exams so messed up :( I would hope the entry requirements might be a bit more flexible for the next couple of years though?!

I can’t comment on the car stuff as I’ve never driven but I hope a check over helps.

I’m stressing a bit today as little one sent home with a fever so all the tests and isolating etc aaaargh. And within the same half hour I also had a message from universal credit about a meeting - I think due to her age I’m going to be moved into the job seeking category?

I actually really want to work, I feel ready for it mentally, but I’m worrying about all the unknowns, because you hear so many stories of the job centre pushing people into work etc and with my health conditions there is lots of stuff I won’t be able to manage long term (and TBH I think 16ish hours is about the most I could handle regardless). I’m working towards a long term career and have evidence for that (courses, volunteering etc) but in the short term I don’t know what my options are, I’m not qualified for anything really but stuff like retail is not an option.

I hate the way I struggle so much with change. Any time something unexpected happens like today I just have to write off the day as it totally throws me off. I’ve grown to accept it more though, trying not to feel guilty as I did get a couple of bits done this morning, but I do hate knowing I’m not managing stuff.

you can check your own tyres for obvious items stuck in them.

I managed to drive into a bit of metal on the bottom of the garage door... there was a sssssssss noise.... school run.

SingToTheSky - You'd think they would be more flexible on entry requirements, particularly this year but no. It's not even like the subject she wants to study is really academic (like chemistry or maths or something), it's a creative subject that's mostly practical coursework but they are being really strict on it. I feel sorry for some of her friends who have it much worse(DD has an offer for 2 out of the 3 subjects and a conditional for the 3rd), one of her friends (also SN) has struggled with school and ended up in alternative provision (still within the same school but separate area), she's now back in 'normal' education but she's likely to come away with no GCSE's and no idea of where she's going to go or what she's going to do. The school are not helping her either, another of DD's friends who struggles academically and is not likely to pass many (if any) GCSE's, same story no idea what she's going to do as some of the places she's applied have all turned her down due to not being close to meeting the minimum entry requirements. I'm having to step in and help these girls as the school don't seem to care and their parents seem to think the school are going to sort it (or don't care I'm not sure which).

How is your little one today? Have you managed to get a test? We are having to test twice a week, I'm surprised DD has gone along with it as normally she freaks out over medical things, probably helps that she can swab herself.

I relate so much to your comments about work, I've been having a look locally to see what's available and it's just impossible, I'm either not qualified or it's the type of job I would be terrible at / it would really damage my mental health (such as retail). I think that's why I've been looking into going back to college/uni so that I can train up in something but I'm worried about the same issues cropping up. So many jobs say things like "excellent communication skills" and "good team player"...yeah that's not me, I'm fine typing but face to face I just can't. I remember back when I was a teen in my first few jobs, it was okay then because I would have just been the awkward, shy/quiet teenager, can't really get away with that when I'm late 30's. I don't even know what some of the people I worked with look like(other than male/female, light/dark hair, tall/short), I couldn't look at them properly and one place I worked there for about 16 months (although I was signed off ill for quite a bit of that).

Oh and struggling with change, I vary with that so much from being okay to on the verge of a meltdown, even with the same change it can vary. So for example DD likes to walk into the town centre after school with her friends and I pick her up from there around 4.30. There have been times when she's asked me at the last minute to pick her up straight from school and most of the time I'm in tears because I'm not prepared for it and my husband ends up picking her up but there have been times when I've managed it but ranted to myself in the car on the way there. Today is one of those days when she might try and change the routine(long story), so I'm trying to mentally prepare myself for all possibilities - pick up from school, pick up from town at usual time or pick up outside friends house a bit later (if she walks her home). It won't stop my brain from screaming "FFS why can't she just stick to the plan" but it means I'm more likely to be able to get her rather than having to phone my husband in tears, asking him if he can go get her because she's changed the time/location

BlackeyedSusan - I've checked them (that's how I knew they needed air) but it's just an irrational thought I have, it wasn't so bad yesterday, I mostly ignored any noise and tried to convince myself that it's just the really poor quality roads around here (the potholes are terrible).

Last time I took my car in over the tyres was because one clearly needed changing as the tread had worn down, I hadn't even noticed another one had a nail in it, eagle-eyed mechanic spotted it in seconds (probably what's feeding into my anxiety that I'm overlooking something like that).

Azpie that’s awful, I’m so sorry you’ve had to step in like that and for another child too, you are lovely to do that! But it shouldn’t be necessary. 💐

Oh I soooo hear you about the changes with your DD’s plans, it’s one of the challenges I really didn’t anticipate with parenting a teen! It doesn’t help that she’s undoubtedly ADHD like me, and also her bestie is similar as is her mum - I tend to over-make plans (definitely overcompensating for my adhd side, I am very risk averse) whereas her mum is always changing her mind last minute and I find it all quite stressful.

In some ways it’s been helpful that there isn’t as much to do for the last year. Fewer opportunities to do stuff, life is smaller and calmer and less demanding. But also that’s made me less resilient to change I think. It’s like smaller changes have a bigger impact now.

Little one is fine thanks, testing her was horrible! We’ve had a really lazy day so far but I feel quite paralysed by low level anxiety again.

I’m not sure what job I could do. I’m more concerned about physical limitations than the autism/adhd, but then when I was thinking about doing something like office work I got this sudden wave of fear, what if everyone in the office hates me, I won’t fit in.

I was lucky with work as a teen, I just tutored in my music school as many of us older students did. I’ve tutored privately since although mainly through networking in the home ed scene, as I’m not confident about myself. It was a disadvantage eventually not having the retail experience though - I ended up volunteering in a charity shop before I got my library apprenticeship. That job was great and I miss it but physically it’s not feasible, they’d never take me back anyway because of my attendance due to all the illness.

I really have no clue who would hire me when I can’t do the manual handling, on my feet all day type jobs. Job hunting after college was so awful, I remember not being confident enough for stuff like banking interviews, but when I went for data entry and office junior type stuff I was overtly told I was overqualified due to my A level results. It was soul destroying, just another confirmation that I don’t fit in anywhere.

FFS. We have a timetable to take tests. The children have two parents who struggle with this. Having a mega flap over sorting it.

I dread having to work again. Not sure I can manage it if I have to lie down in the middle of washing up.

Ugh, yes about jobs. Every one I look at seems to want you to have excellent communication skills, be really organised and efficient, able to prioritise your workload etc etc etc and I’m crap at those things! It just makes me feel like nowhere will want me. It sucks.

It’s really helpful to hear so many of us struggle with this stuff. I’m ok socially in the right environment. I think I was lucky in my library job, the way it was structured and TBH the job tends to attract quieter types anyway so I didn’t really stand out in that sense. It was a big central town one with lots of space and tasks so it was a good mix of being on my own and being social with colleagues and customers. I do think it was the move up to full time that pushed me into burnout though, mentally and socially and physically.

I have so much to discuss with my therapist. I’ve delayed it until after the job seeking appt anyway. It’s nice to be talking about future stuff instead of past stuff.

I’ve been finally starting to write a novel the last few days. Not writing the body of it yet but doing lots of notes, snippets I think of, character profiles etc. It’s weird, I’ve had the premise for years but suddenly I feel able to get on with it. Partly procrastinating in a way as there’s lots of other stuff I should be doing!

Ooh I love writing too! Except, true to ADHD form, I never have the discipline to sit down and write a good chunk of text, just bits and pieces.

Ha yes I think that will be a struggle for me too! A few years ago I learned a technique called magpie (magpieing?!) - where you note down phrases, metaphors etc that you love in stuff you read. That then becomes inspiration for your own writing. I’ve had a note on my phone for that for a while but recently I’ve ended up with more and more ideas myself too so it’s gradually turned into a huge amount of my own ideas. But also I’ve been reading a lot more this year (6 books so far) and I’m finding that it inspires my own thoughts a lot.

I’m absolutely itching to get started properly today but I have a lot of random admin crap to get through first

I’m finding the medication is helping me with the delayed gratification - I’m better at saying “I’m not doing Y until I’ve done [more important] X” etc

I wrote a couple of poems in 2019 too. Pretty dark though (trauma related - prompted some friends to open up to me about their own pasts too which was nice 💐). I write those in a very odd way, it never flows it just gets bits and pieces and gradually comes together.

It’s nice to find creativity again. I was very creative in my childhood and teens. I was in a psych unit age 15 and the hospital school was amazing, we did so much art/writing/music therapy. When I left there I just didn’t feel safe to be creative anymore so I stopped writing and drawing. Inktober 2019 started me drawing again and I even won a little autism art competition last year but it still goes in phases which is frustrating - I’ve barely drawn at all this year. Confidence is a massive issue.

I started writing a book series several years ago, finished the first book and then that obsession faded (I'd made a rough plot for the entire series, 5 books in total but only managed to finish the first). I spent months researching stuff for the series, I wanted everything to be as factual as possible (despite the story being about supernatural creatures). In the first book the protagonist is still in high school (from England but moved to America) and I spent so long researching the American schooling system so I didn't put anything in that didn't make sense. Even things like some of the creatures could move at super-speed, so I was working out theoretically how long it would take to get from a specific town in 1 state to another town in another state if they could run (in short bursts) faster than the average car at top speed. DH insisted nobody would care, just say they move faster than a Ferrari or something the average person considers fast. He failed to grasp that it mattered to me (a lot) until it didn't, looking back it was ridiculous the level of accuracy I was trying to go for in a supernatural book series lol.

TBF azpie DH would definitely appreciate that level of detail! He loves that genre and gets annoyed at unrealistic details despite the supernatural premise :o

I have a children’s series sort of planned too for the last few years. All stems from my Enid Blyton obsession in childhood (definitely one of my main special interests). In fact EB’s daughter did some talks locally and she gave me her address so I could send her my story, I was about 9 at the time and bless her she wrote a long letter with feedback, I was so proud :) I’d still like to write the new series one day, but the adult book seems to have finally formed properly in my head so I’m going with that. It’s a general fiction drama kind of thing but definitely taking inspiration from bits of my own life and mental health.

I’ve been really struggling with admin today. Filling in forms and dealing with different file types and permissions and stuff like that is absolutely doing my head in. And yet I’d be fine in a work capacity. I quite fancy an admin job!

ahhhggghhhh... census is not designed for disabled people to complete.

ordered a large print copy, for a household of more than two. you can only fit two on the form. need an additional form. except that it is not possible to order an additional form in large print. nor does it tell you when you order that you need more than one form. I had a meltdown. computers, plus forms= instant meltdown.

there is a question that I can not answer any of the options truthfully and it does not give you an other box.

Oh no! That is really shit about the large print - when you feel calmer do you think you could email them? That’s a shocking lapse.

But I totally get you on the meltdown, it’s so fucking frustrating. I don’t like forms generally, I tend to procrastinate (case in point... pip renewal 😭). We had a gazillion tech issues doing the various email forms today and I was so close to chucking the tablet out of the window 😳

I’m a bit worried about one of the questions too, I tend to overthink everything as it is and don’t like worrying about getting stuff wrong.

yeah, bits of computer flying out the window is the likely outcome of trying to fill stuff in on line.

the large print keeps me calm. weirdly. probably as I am not putting unseen effort into reading. I don't think my eyes read straight as I can read a word from the line above or below or miss whole bits out. had a snarky reply from school once when I emailed them about something that was in a letter. reply was sent thanking them and apologising that I could not find the information in a big block of text. I could not read when stressed.