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. I was diagnosed in April at the age of 40. Now trying to work out how to get some things in place to help improve my life.

First day on Concerta today...low dose 18mg. Feeling good and calm but then I’m off work and the kids are at school! Excited to get started on this process.

Hope it’s okay to join… I’ve been lurking for over a year but it’s taken a while to get up the courage to post 🙈

In my 40s with with a lot of ASD traits and selective mutism but no diagnosis yet. Not sure if I can cope with diagnosis as worried it will bring up too many bad memories of my childhood and buried resentment at family for not seeking help for me when I was younger. Seems easier to manage those relationships if I keep all that buried but I’m not sure if that’s healthy long term as then I’m basically masking through all close family relationships?

Hi all. I've just turned 50. Was diagnosed eventually last month with EDS. I know Autism is present in around 40% of EDS patients. Never thought that was me. Then I got talking on a Facebook support thread about tactile defensiveness. Talk about opening the floodgates! My EDS came as absolutely no surprise, but the link to Autism has totally made sense of my whole life.

My EDS turned out to be hEDS (?) Definitely HSD they came into the bloody appointment and said we think you have Ehlers Danlos and then the letter came with a bloody question mark. Definitely bloody autistic though. Glad that was clear.

I understand that left. My mum told me that I was offered help in Y4 or 5 but she turned it down. I am so cross but they did what they thought was best at the time.

The diagnosis process brought up loads of stuff. It is just settling down now. (Just after Feb half term and before that for appointments. )

First post on this thread. I was diagnosed with ADHD in April this year.

Currently on Xaggitin (sp) which I’m looking to increase at my next review.

Just wondering if anyone receives any support with their ADHD? Realistically I just look like I’m a lazy cow but in reality I’m not and I struggle hugely with all aspects of ‘homemaking’ which of course in turn makes everything else harder! I want a life where I don’t have to move the same pile of clean laundry from the bed to the chair every night, where I don’t have to iron the kids uniforms 10 seconds before we leave in the morning because I don’t have the sense to do it all at once in an evening, that feeling of knowing my kids deserve more than the life that they have just now because of me.

I heard of ADHD coaches, Hotel.

I think they are like a counsellor but who understand ADHD. My own counsellor was helpful for the mood problems I had (related to family illness) but she kept making susggestions of "writing things down" and "do things to completion"...so, really, it wasn't very helpul...

I have just started Elvanse. Will see what that does and if I need some help/nagging I might try and find an ADHD coach.

I'm 50. Can't believe it's taken me this long to suss that I'm maybe not totally fucking useless.

Thanks @vivariumvivariumsvivaria. I need to do something.

I’m sitting here on my bed in tears because my OH won’t be home for hours and the food shop got cancelled because I forgot to make sure there was money in the account (no financial issues just organisational) so there’s nothing for tea, I’ve spent all day working and I’m upstairs on my own upset when I should be with my kids, I can’t hang the washing up that’s in the machine because the stuff on the drying rack isn’t dry yet but for some reason all of our washing baskets are piled up together outside and I can’t separate them so I can’t even just remove the stuff from the machine and put more in. I have 3368493 things to organise returning to stores - some purchased by others and they’re piling on the pressure for me to return them.

God how pathetic I should but it all just feels so unmanageable at times.

No one's looking, quick, come here

It is shit, that feeling of overwhelm. Awful. I hate looking at piles of To Dos. I can't figure out where to start, and so I don't start or I start them all. Neither strategy works. Apparently, this is a symptom.

Symptoms aren't personal failings.

Chin up.

how are you feeling today @Hotelhelp I hope things improved on Monday evening.

fuck sake this everydayorganisation lark is bloody hard work isn't it? (autistic, hypermobile, fatigued)

How's everyone doing today?

They are changing how bins are collected here.... autistic change in routine not going down well.

I'm on day 8 of elvanse and I do think it's having an effect.

In the last week I have worked out a way to move my work stuff forward, usually I have loads of (really very good) ideas but I can't work out which to prioritise and so I get stuck by inefficiency.

I now have a line of post it notes on the wall and it's fallen into place.

I've also lost 3lbs, the binge eating and nibbling has stopped.

I've not had any sleep disturbance, the initial side effects have worn off and my imposter syndrome has evaporated.

So, I'm really hopeful that this will be effective for me.

However, my BP is up. It was already high because of fatness and inactivity, and it's borderline for having to come off the elvanse. Psych has agreed to me carrying on with it with weekly reviews of BP until titration is done but she would normally recommend a non-stimulant.

I'm happy to swap, but the non-stimulants are associated with weight gain. So, it feels Catch 22, if I put on (even more) weight my BP goes up. If I stick on the elvanse my BP risk increases - but, if it makes me able to be organised so I can go swimming and exercise regularly, then that will reduce my risk.

I'm hoping she'll agree to increase my BP meds (I'm on the lowest dose) and I can carry on with the elvanse because I do think I can think straight on this stuff. Even if I did for a year and got myself thinner and fitter and then swapped to a non-stimulant.

I have a taste of being able to concentrate and it's made me realise that actually I was struggling more than I thought. Far more. And my impulsivity and big emotions were impacting on my marriage in a way that I just didn't recognise.

It's all a bit confronting. These meds might make my life happier - but I do't much fancy having a stroke!

Sorry about the bins Blackeyed. Hope it becomes second nature soon.

Thanks viv, I hope you can work out the meds quickly. it sounds quite promising with the organisation. It is interesting to read other people's experiences.

the football tonight has brought some resepite as ds has gone to his dadd's to watch, but is also making me nervous (even though I do not like football) as it is so final when they are out. thankfully ds is very pragmatic about it so not going to be as bad a meltdown as is possible.

also got parents evenings on a new system. and the antivirus is running out and... lots of other little things adding up to a whole heap of straws on a camels back.

One thing though, I am going to trial that post it note on the wall idea. sounds genius.

The post it notes weren't my idea. I asked a friend about the meds, her son has ADHD and she's pretty sensible, didn't tease me or dismiss me which I was glad about.

We had a chat about the things I find difficult and she handed me 3 packs of post its - each a different colour. So the big title is one colour, the importance is next and the individual steps are next. It means I have a visual image of what to do, instead of getting lost in my head and doing nothing.

She uses this with her son, and I think she's an actual genius.

WEll done on your straws. They are a bugger in general, aren't they, straws?

I have a child sitting on the fecking landing refusing to get showered and go to bed.

Is the child still there?

That sounds wearing. Very wearing.

I ignored DC and they took themselves off to shower and bed eventually leaving a pile of clothes on the landing. But left me awake for a good hour after with the adrenaline...

That's good parenting, though.

How old is DC?

young teen.

Hi, checking in.

I'm ashamed to admit I am really struggling. What I find hard is the spiral. I know the struggle so well, as soon as it starts I get mind blank / panic that someone will find out how incompetent I am, which stops me thinking clearly, then the thoughts of being crap and worthless queue up, then more thoughts that I can't possibly tell anyone that I feel like this, then I want to curl up and not exist. Eventually survival instinct kicks in and I do the thing that needs doing. But it's bloody relentless.

I think I just need some kind words - anyone?

@MistySkiesAfterRain

oh no, that sounds really difficult.

the repeated nature of brain doing running away with itself pisses me off too.

having trouble communicating kind words as brain has melted in the heat, and you know... communication disability..

@MistySkiesAfterRain how are you today?

I dropped off MNfor a bit - partly hyper focus and partly disorganisation.

Also a bit muddled about the meds. I think they are working, like, I am definitely better at being able to be organised but it's not hugely impressive. Also, I have put on 3 lbs. WTF?

Hope you and DC are ok, BlackEyed and you too Misty - I recognise what you describe. We'll get there, now that we know it's a "thing" rather than a failure of our characters