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.

Congratulations bertie! 💐 How do you feel off the meds?

I was brave and phoned the psychiatrist office about the ECG form I lost. Her secretary said they’d send me a new one but they’ve kept my phone appt on 19th - seems a bit pointless when I’ll have nothing to report 😳 I did say they could cancel it and use it for someone else.

That said I am trying SO hard to instigate a bit of routine despite the distinct shortage of dopamine and I do think I’ve learned a fair bit in the time I was on them that I can carry forward to now IYSWIM. Even little things like making sure my 3yo has clothes ready for the next day, but also I’ve managed a bit of studying etc which feels so so huge.

It’s so bloody hard being in a house full of other autistic ADHDers though. It’s like trying to bail out the titanic with a teacup! 😳

Hi there, please may I join? I was diagnosed a year ago, I’m in my 40’s. It’s taking a while to sink in to be honest. I’ve got so used to thinking of myself as lazy/disorganised/a bit crap at life. So whilst I’m grateful a diagnosis has offered an explanation for so much it’s hard changing my mindset. My partner is neurotypical and I struggle with feeling like I am being a nuisance.

I feel OK but I've been feeling a bit frustrated with my meds anyway. I am not sure that coping mechanisms aren't helping me more. The thing is that the whole COVID restrictions, DH working from home and even Christmas has fucked up my sense of time even more than it usually is so I'm not sure they were able to help through those barriers.

Absolutely. It’s so hard to tell isn’t it - who’s to know what the last year would have been like if not for lockdown etc? I remember thinking in March/April how glad I was that I had the meds to get through lockdown as I was managing to make use of the time a bit - decluttering, exercise etc and I am certainly struggling more with that since coming off them. But maybe the anxiety build up on the meds was more due to lockdown? No way of knowing really but I don’t want to risk going back on them (although the help with weight loss would be nice) - the anxiety and anger were so bad.

Welcome @AutisticID I know what you mean about struggling to change mindset. Years of feeling like a failure because of not being able to do XYZ don’t suddenly disappear even when you can do XYZ, or if you have a reason for it. 💐

I'm joining - what this latest mental health collapse of mine has shown in me, highlighted by what I'm increasingly seeing in my youngest who I strongly suspect has an autism-spectrum condition (I'm just gathering evidence of my suspicions at the moment before I begin trying to push that through the system) is that I increasingly suspect I have autism myself.

I've never been able to deal with change and uncertainty - even not knowing what I'm getting for Christmas can feel like hell for me - so living under constantly changing rules and regulations is absolutely sapping me - likewise the sensory stuff, as my mental health sinks and my coping strategies dwindle - the volume and feeling of the world just gets so high it bloody hurts me. I've always felt socially ill at ease and that's spiralled as I've got older as well.

Mentioned it to the GP who just giggled and said I'd be looking at over 2 years wait to get any answers - so I raised it with university (hell they got me a dyslexia diagnosis in my 40s) who I've got an appointment with on Monday to see if they can help me navigate to a diagnosis.

Normally I'd cope - by being hyper organised (again - I just thought I was very organised - these days I wonder) but I think now I could use some answers - especially in the light of what I'm seeing in DD2.

Interesting that you’re organised CoffeeWithCheese - I’m the complete opposite! Maybe that’s more an ADHD thing, I don’t know. My teachers at school were constantly on at me about my piss-poor organisation skills. But then, everyone with ASD is different.

Hi, can I join too please? I was diagnosed with autism 3 years ago aged 40. Had suspected for a couple of years before that. On the outside, I look together and living a lovely life. I used to mask a lot but try not to now. But I am bright with good (learned and studied) social skills. Married to a high earner, no kids and live in a beautiful location with our dog. I have my own business and work from home.
However, what people don’t see is that my business is a joke (worse since COVID). I only worked a few hours every week and earned £2-400 per month. I am lacking in confidence and get major anxiety about work so don’t put myself out there much in terms of advertising etc as deep down I don’t really want to work at all as it stresses me out. But if I don’t earn I feel like a failure. I have had regular jobs in the past but struggled massively so can’t handle just getting a supplementary job, not that we need the money but I feel lazy and guilty if I don’t work. And despite having all the time in the world, I struggle to focus on anything, keep the house nice, exercise or do anything worthwhile with my time. I have regular burnouts and episodes of exhaustion and struggle to cope with the most basic of things sometimes. But people don’t seem to see this, they just see someone who has ‘mild’ autism who lives the life of Riley with all this time on their hands and just lazes around while her husband pays for everything. I feel like a shitty failure. Sorry needed to vent as I’m struggling a bit at the mo. I feel unseen and so misunderstood by people - I might look lazy but I really am not, I just find things really difficult, the simple stuff other people take for granted. Luckily my husband understands but I do feel very judged by society, and myself if I’m honest

Oops seem to have a knack for killing threads on MN!

You won’t have killed the thread, EssexLioness, this bit of Mumsnet is always a bit quiet!
People never really see what’s “behind the façade”, so to speak. You can never tell what someone’s going through just by looking at them/their life.
It’s also one of the annoying things about high-functioning ASD, we’re so adept at masking and acting neurotypical that nobody actually realises how difficult we’re really finding things, unless we tell them.

Ah thanks, @toffee1000, yes I agree that’s very true! Glad to know it’s slow moving here and not just me! 😂

Hi @EssexLioness I absolutely relate to your post. Sorry things are tough. Like you, I was diagnosed in my early 40’s and even through now I have a “reason” why I find things so hard, I still can’t shake the feeling I’m just lazy, stupid, don’t try hard enough. I had a professional job that I had to eventually give up as I couldn’t cope. I think the only way I could work currently would be to have my own business, but I don’t actually have a skill or anything I could actually do. I think you are amazing having your own business, and for your limited hours earning decent money too! That is a huge achievement, you should feel proud of.

Thanks @AutisticID, that’s really kind of you. I don’t feel like it’s amazing at all but I think that’s cos I constantly compare myself to my husband who is also autistic and a doctor, so I always feel useless in comparison. But our autism shows in different ways: he is driven and hyper focused at work but struggles with anything else, whereas work has always been my main downfall. Sorry you had to give up your job, that must’ve been a blow to you. Before owning my own business I flitted from one job to another every 3 years or so

Hi again. For me it’s being ridiculously risk averse that holds me back from running a business - I was tutoring for a while but stopped due to low confidence. Finally got a couple of pupils between lockdowns thanks to somebody tagging me on a Facebook post - really good for me but obviously that has stopped again (it’s piano, which I don’t feel able to teach over zoom with beginners).

I’ve been really struggling the last few days. Had a meltdown on Thursday when our plans had to change last minute. It was so silly, it was just because I’d finally set up a meal plan for lunches but then on day 2 DH and DD1 had to collect their food parcel etc and I basically ended up a wibbling wreck not knowing what to prepare (combination of food issues between various family members).

I’ve not been right since, I think the timing with my period has been particularly bad as I just haven’t been able to recover, I just feel on edge all the time. My 3yo has been really pushing boundaries and even hitting, but she’s also bored and I feel awful for not being a more involved mum. Today I was sobbing on DH because I feel so utterly fucking useless.

Why is it I feel like while most people juggle lots of aspects of life - housework, work or study, exercise, whatever - I just cannot manage to juggle as many? Even something as small as remembering to brush my hair each day seems to push something else out of my brain. I try and exercise to get fitter and healthier and even though I don’t overdo it (having CFS/fibro I have to be careful) I can’t also do well at cooking. And so on. I feel like a total failure all the time. I try so hard to build up routines etc but even going very slowly it’s like I’m actually incapable of building a new habit.

Sorry didn’t mean to rant quite so much there 😳

Hi @SingToTheSky, that sounds really difficult. I struggle with juggling different aspects of my life too. I find I only have the energy/ focus to really concentrate on one or two things and everything else goes out the window. Sorry you had a meltdown, it takes me days to recover too.

I absolutely feel like this too. It amazes me what other people manage to fit into a day and makes me feel really inadequate. I am having a good day if I manage to shower, eat 3 meals that aren’t all cereal and do one job that needs to be done. Things like walking the dog or doing an online shop seem to take me so long to do compared to other people. It really frustrates me and makes me feel inadequate. Sorry that’s not helpful, but just saying you’re not alone in how you’re feeling. I am also terrible at cooking and want to change it but it’s so hard!

YY Sing I totally identify with all that.

Building habits is very hard, even things that most people seem to take for granted. I remember once crying at a MN thread because someone had once again used the blithe analogy "It's just like remembering to brush your teeth!" - I was shit at that for years and years and literally couldn't remember. But if you mention this to any normal adult, they look at you like you're admitting major alcoholism or depression or some kind of inability to function because it's so normal and easy for them.

I don’t tell people I have trouble with doing my hair or teeth, because I worry they’ll think I’m gross!

I always feel bad when I look at MN threads where they discuss how often they wash their hair. I hate washing my own hair, I cannot do it properly. Then some people do theirs every day, and are sometimes astonished that other people don’t do their hair every day... the longest I went without washing my hair was four months, when I was on my year abroad and the shower was awful. I could just about manage washing my body every day, but the water stream just wasn’t powerful enough for a hair wash. I’ve not gone that long since, though. It doesn’t help that my hair is really thick and takes forever to air dry. If I had the money and we weren’t in lockdown, I would have my hair professionally washed and blow-dried every week.

Ah yes the hygiene stuff. I never tell anyone either. So much of it is wrapped up in sensory issues. I struggle to even touch or look at my teeth so do brush them daily but find it so hard. Also with washing my hair, showers, baths etc I find them really exhausting. I have a bath and wash my hair three times a week and have a sink wash the other days. I am clean and careful not to smell but do still feel some people frown on this and would definitely think I was lazy for not doing more

I am so so grateful for the replies on this! It is great to know I am not alone in these struggles. The self care stuff is embarrassing isn’t it. The combination of not having the executive function and not having learned these things as a child (of course in hindsight I can see this is partly due to my parents’ own autism/ADHD) is a killer. Bertie I can totally see why that comment made you cry. I can’t even remember to put rubbish in a bin half the time. Add in two children with ADHD/autism (only the latter is NHS diagnosed though so no meds for them yet) and a DH with similar issues and we are in absolute chaos most of the time.

I’ve been thinking a lot lately about why I’m so exhausted (apart from the obvious fact that I have ME/fibro, although in a mild phase), and particularly why we seem to run so much less efficiently than other households.

Some examples:

1. Neither of us are able to drive. Multiple physical reasons for this, so not all ND related (I know plenty of people with ADHD can focus on driving). And I don’t mind walking, but it means everything takes so much longer, there’s no quickly bundling DD2 into the car to nursery, or in non lockdown to take the DCs to their clubs.

1. Recovery time/transition from being outside. Although I can manage more walking now and I’m not even necessarily tired, I seem to just need to sit down for ages after getting in. If it was raining or I had to go in a shop it’s even longer. I got soaked today and made the mistake of sitting down instead of getting straight in the shower.

1. Cooking being really confusing. Even the things I’m good at (eg I make a mean pasta sauce) seem to take forever. I honestly don’t know how people do it quickly. If I focus on cooking more for the family or just for me, it takes so much time out of my day, and again I need so much time to just recover from it. If I get interrupted eg by the little one wandering in wanting to help (which we do sometimes to keep her awake if she’s in danger of a late nap), it’s even worse.

1. That reminds me of another one - the fact we are so shit at routine means our kids are too. DD1 has never been a good sleeper, the melatonin is less effective now and we are finding it hard to get a handle on screen use in the evenings (because, hello! Overwhelmed) and she’s sleeping even less. DS is now starting to struggle to sleep. Little one has very little bedtime routine and often isn’t even in her bed. The guilt over this is paralysing TBH, it’s even worse than when the other two were little. Not only do I struggle to remember my own self care stuff, I also have to remember theirs. DH struggles too (as well as clearly being ADHD too he grew up severely abused so also didn’t learn this) so can’t just leave him to cover it all either. They are often much later to bed than they should be and we are all knackered. In the mornings they don’t get as much work done, the afternoons are hard with 3yo around (she is bored because guess what, I am too overwhelmed to sort activities for her let alone remember to clean them up after).

1. The house is a mess because ADHD makes decision making very hard. Clutter is the result of all these indecisions. I am overwhelmed looking around wondering what to do with stuff. It got a lot better in the first lockdown but overwhelm has set in again and it’s crept back up, I can’t get the kids to tidy up because most of it isn’t their mess really, it’s mostly the 3yo’s or ours. It’s not like we have any way of sorting it all in one go because between both of our health issues we don’t have the energy let alone a babysitter.

I’m sure I had more of a list but TBH most things fit into the above categories anyway. It’s not like we don’t try. It’s getting embarrassing, the amount of times we’ve set up a new routine, or chore chart or whatever. I know getting some of this stuff sorted would mean we were less overwhelmed but where do you even start? It’s like a Rubiks cube, you work so fucking hard getting one side sorted and everything else goes to shit.

Sorry that was a really long post. I’m just having a “where the hell do I start” sort of day. I honestly don’t know what else I can try. Trying to live even a quarter of a normal life is wearing me out! 😳

@SingToTheSky I relate so much to the recovery time issue! And I don’t even have kids, that must make everything so much harder! Every little thing I have to sit down and recover afterwards so it ends up taking twice as long as it should for me to do anything. If I go out of the house that recovery time is so much worse. I am so overwhelmed from a sensory point of view that a trip to the supermarket or a quick coffee with a friend means I have to clear the rest of the day as I am so drained and over stimulated that I need that long to recover and heal myself .

I often find decision making difficult too. In my case it’s from a fear of doing the wrong thing. I had an educational psychologist assessment when I was about twelve, and the guy who did it told my mother that I was reluctant to give answers, even though they were often correct. Of course, when there is no right or wrong answer, that can be even harder!
I find uncertainty difficult to cope with. Strangely I’ve been okay with lockdown, because I know everyone is in the same boat. It’s not like pre-lockdown when everyone else appeared to have their lives sorted/knew what kind of job they wanted and had the confidence to apply for jobs.
That’s another thing I struggle with... I look at job adverts and they all want people who are organised, able to work on their own initiative, good at managing their own time... all of which I struggle with. Unfortunately I wouldn’t do well with being self-employed, because I do best with a proper structure to my day and having to be somewhere at a specific time, rather than doing all that myself.
I am also terrible at “selling myself”, talking up my good points.
I could go on... but I’ll stop for now.

I’m so glad I’ve come on to look at this thread this evening. I’m absolutely the same as you @EssexLioness , I look like I’ve got it all together but feel so awful that dh earns all the money. Why is it SO hard to work as someone with asd? Is it ever going to stop bothering me? I worry all the time about what would happen if something happened to dh- I don’t think I could support the kids. I’m so completely hopeless and my mental health is through the floor.

I would be happy to not work if only it didn’t look like I couldn’t be bothered. I wish I could show how hard absolutely everything is!

Sorry you can relate to my post @Oddgirlout. My husband was rushed in for emergency surgery before Christmas and I was unsure if he would make it. Thankfully all fine but it was so sudden and scary. Obviously I was terrified of losing him, but at the same time it really woke me up to how dependent I am on him for so many things.