Autistic Women Assemble! #2

[Nepmarthiturn]

Helloooo lovely people, a new thread for a us to continue to chat and connect with other autistic women (small talk and word mincing not required). 😊

As before, anybody newly stumbling upon this is very welcome to join us (even if still awaiting diagnosis). But we'd be grateful if others could leave us alone please, like the NT man we encountered in thread #1. 🤣

Morning everyone, hope you all have a lovely Tuesday 😊

@TheShellBeach
I tried the switchboard a couple of times and they didn't answer either(to be fair I phoned once about 9 and again about 11). I eventually got through, in an absolute rage I rang and as soon as it went to the recording to say they couldn't answer I hung up and rang again, I did this 9 times in a row and they answered. I've put my complaint in because I shouldn't have to spend nearly 4 hours and phone almost 60 times for someone to actually answer. If they are that busy or understaffed or whatever the reason then they really need an answer machine, even if it's just for people like myself who just need to re-arrange.

@Nepmarthiturn
Hope you have a great holiday and the small ones behave 😁

@Craftycorvid
Wet clothes is such a horrible sensation to me, thankfully no rain today and a pleasant walk. We went past a springer spaniel, shih tzu a boxer and a couple of jrt and no reaction, I just don't understand what it is that triggers my dogs. It doesn't seem to be size or distance or who is walking them (at one point I thought maybe it was the person they didn't like 😆) like I said the only definite is labradors, they hate them.

In other news that tutor I talked about a couple of pages ago, clearly couldn't have had a problem with me, he added me on linked in and has messaged me a couple of times to see how I'm getting on. The presentation was a disaster, 1 teammate's wifi wasn't working (she was freezing every 20 seconds) but she wouldn't let anyone else take over "her part" so we ended up wasting most of our allotted time waiting for her connection to work and so I had to rush through all of my work and didn't really have the chance to explain all of the features I'd put in. So glad I'm working alone on this next project, I'm so pleased with how it's going so far and have so many ideas.

I would have been plotting to kill her in those circumstances.

Likewise the people at the hospital who fail to answer their phone.

Hi everyone, hope Tuesday is going well.
I was so dysregulated this weekend I hid in my room for a while. It helped. I feel a bit better today but still on edge, think it's because we go away Saturday.

@Craftycorvid oh no, wet clothes feeling is one of the worst.
@Nepmarthiturn hope travel plans are nice and smooth and you manage to relax a bit.

@camelCase I have never understood why you can't just fill-in a quick form and do this stuff online. It's so much easier and would take a hell of a lot of pressure off the doctors receptionists. Obviously, if you're an urgent case and you need to reschedule an appointment, you should probably do that by phone, but if everybody else can sort it out online, the phone lines will be free for calls like that.

Yes to the wet clothes feeling being horrible. Sometimes even if I splash water on myself or spill it, I’m just like “eww get this top off now!” haha.

I’m unemployed currently but volunteer three times a week. Right now I’m at a local community farm, which is very busy as it’s the holidays!! During term time it can be very quiet and boring, but for the past few weeks it’s been pretty busy.

Wet clothes is awful. I hate water on my face I avoid it in the shower and will just pat a bit on to wash my face at the sink and dry immediately 😂 but if I get a splash and can't immediately dry it I have to wet my whole face rather than a bit of it be wet.

Soooo......
You lot have known for a few days that my son was diagnosed with ADHD last week. My mum doesn't. Why? Because she's not interested. 🤦🏻‍♀️ Does anyone else have an awful relationship with parents because they've 'labelled" their children? Feeling very let down and angry today

I'm sorry to hear that. I don't have any experience - we had no idea about our autism/adhd in my mum's lifetime. I don't know what to say - I'm on your side! 💐

Sorry to hear that @AuDHD4Me . I have had similar: first family making ridiculous comments about my autism. Then later telling me not to "label" my children because it will "ruin their lives". Awful comments minimisng our issues saying "we used to just refer to that as personality", that extreme anxiety is "self-indulgent navel-gazing introspection", that not bullying my children when they are having a meltdown and considering their sensory issues is "pandering to them" and that they can't be autistic because they make eye contact and are empathetic and intelligent. A load of "in our day..." four Yorkshiremen type comments. What, so because children with undiagnosed conditions used to be treated appallingly we should continue the abuse rather than learn from it? I've also pointed out that they are willing to accept other medical advances in the last 30/40 years and aren't demanding 1980s medicine for their own health issues... 🤣

My reaction to this has been to state that their ideas about autism are completely wrong and outdated (turns out the "source" of this is a friend of theirs who was a school teacher over 30 years ago... many of us who were children then and not diagnosed until we were adults know how clued up those teachers were!!). I have stated that I rather trust the autism consultants and paediatricians that have diagnosed me and my children and academics who have spent their lives studying this subject. I've offered to help by sending them up to date books and articles if they wish to educate themselves on the topic but stated there is no point in us discussing it further otherwise.

It's incredibly hurtful but I think you cannot battle wilful ignorance, you just have to draw a boundary and say "I'll help you learn if you wish, otherwise there is no more to say on this topic". I think it's driven by ignorance, this strange idea that beliefs have equal validity to data and research from experts, and also an unwillingness to want to have to address that they failed their own children by NOT getting them help, and also not wanting to need to consider whether they may be ND themselves...

It's hard though, when people who are meant to support you are so dismissive and say such nasty things. 💐

@camelCase thanks, we made it in the end! 12 hours door to door. Kids did really well, held it together better than me! But big meltdowns once at the hotel and the masks fell off bless them. Hoping a biiiig sleep will help them reset.

@Craftycorvid I once got caught in such severe torrential rain in London that I was soaked through my supposedly 100% waterproof raincoat and three layers of clothing underneath. It will literally like I'd been in a swimming pool fully clothed. Horrendous, horrible sensory experience and I was then also so, so cold which I hate. As a child I refused to go out if rainy or windy because of the sensory hell of it, or grey overcast weather which I find hugely depressing and calustrophobic, when the light is all grey and you can't see the sky. I think I am solar powered.

I’ve played estate agent today for a viewing at a relatives - the agents were fully booked and it was the only time the viewer could do. I find I can be super-engaging when I need to, and people seem to respond well, but as soon as they’re out of the situation my immediate thought is “thank fuck, bog off, and leave me alone”. Is this normal? It’s the one thing stopping me from plucking up the courage to explore a formal diagnosis. I seem to have the ability to engage really well when I need to, but I inwardly hate it and cannot wait to get away. But the ability to engage is making me think that, therefore, autism isn’t a factor.

@Furries to me this is basically masking! Many of us can engage, but it takes a huge mental toll, it's energy sapping and such a relief to be alone afterwards. The other thing is that after a lifetime of practice masking becomes so ingrained that you do it automatically so you often don't even realise you are, or know how not to do it, just feel the exhausting effects of it afterwards when the emotional vampires have left you a bloodless husk. 🤣

The dreaded washing machine brain. Churn churn churn.

I really need to up my skills, as I have no idea how to “grab” select sentences from other posts. And I try not to “quote” full posts as I worry it’s going to take up too much room each time. Yeah, I maybe overthink.

Re the nightmare project - am glad you got to the end of it, great that you got contacts linked online and I think you’ll smash any solo projects. Have you got to do anything else with those people again, or can you now leave them behind?

Wet and muddy walks are not easy, especially with four-legged friends. I hate feeling wet and I hated hosing off my dog after a walk - she loved it though, the hose was her favourite thing!

For the pp with family dismissing/ignoring - am so sorry. I have no advice (don’t have children), but it makes me so cross that you are left feeling like this. The positive is that your kids will not experience that sentiment from you - which is great. But it’s not fair on you, and you have every right to feel let down by that.

@Nepmarthiturn - ha, it’s just taken me ages to do my latest post, kept wanting to delete it, amend it blah blah.

So have just seen your post. Thank you. I’m still 50/50 between am I masking or not.

Anyway, I hope your holiday goes well. Am not going to reel off a list of platitudes, but it’s obvious from your posts what a great mum you are. I just hope that you are able to get a few moments for you too.

Thank you. 🥺😊 I did order delicious room service and wine last night when they finally slept, so that was lovely!

I bloody love room service. What did you plump for? I’m very boring, my go-to is a club sandwich!

I had potato rosti with sour cream and venison cheek cooked in a red wine sauce. Then panna cotta. And a bottle of primitivo. 😊😊

Ooh that sounds lovely. Not camping has definitely improved our holiday still not relaxed though. My friend said there's no such thing as a holiday with kids and I think she may be right. My friend has not replied again and I think I will need to communicate with him less going forward as it is really bothering me.

Good morning. I'm so gruntled to find this thread! Feels like a safe space.
Obligatory introduction: I was diagnosed last year at 40 after wondering why I felt so different all my life. I have a typical late diagnosed woman profile: "gifted" as a child, hyperlexic, great exam results and very few friends my own age, then totally failed to follow up with being a successful adult due to confusion and being socially awkward/not able to understand people's motives and being exploited easily. Both my DCs have ASD and one also has ADHD traits.

I'm really struggling today. I've been up most of the night stressing about something at work, my heart's been racing and I've felt dysregulated.
I'm in a management role but some staff have got into a habit of "leapfrogging" me and talking to my line manager. I think this might be down to me pausing to process when asked questions, which might be interpreted as uncertainty. I'm not uncertain, but thinking of how to phrase my response.

This feels massively unjust and somewhat disablist (although my staff don't know about my diagnosis they will still respond to ASD traits like the rest of NT society, i.e. badly).
Things feeling unjust is my biggest meltdown trigger, always has been. At least my meltdowns are mostly internal these days...Worse for me but better socially and professionally.

@Nepmarthiturn I completely relate to being influenced by weather. Bright sunny days that are also cold and windy make me angry (and bitterly cold). Certain light conditions either leave me with feelings of dread or just depressed. I also once mutinied on a walk with my other half because I was soaked - literally - to my skin. It was up in the Yorkshire Dales where the weather doesn’t mess around.

And I can relate to the ability to be engaging - often I genuinely like the person I’m with and enjoy their company; I’d just enjoy it a whole lot more if I had a firm idea of when they were leaving! I also breathe a sigh of relief when they do leave. Being with people I like can be like slogging up a steep hill because you know it’s a great view at the top. Being with people with whom I have nothing in common, don’t know or just need to relate to about a particular thing is just climbing the hill knowing there’s another hill behind it. 😆

Sorry that some of you have had such dispiriting experiences with family members. I have heard the ‘no such thing as ADHD, they need a good clout round the ear’ from a few people this week (no one I know, just people I had to talk to in the course of everyday life). I tend to push back and challenge it when I hear things like that now, but when it’s family it must be very hard to feel heard. A friend of mine (who ought to know better) reacted to my observation that a person they were describing may well have been autistic with ‘we didn’t label everything as mental health back then’ - to which I responded that autism is not ‘mental health’ though many autistic people have poor mental health (and with remarks like that, it’s hardly surprising).

Morning, everyone.
@Nepmarthiturn, that meal sounds delicious. My mouth is watering.

@Nepmarthiturn I'm really frustrated with it tbh. I find there is a big 'excuse the older generation, they don't understand' mentality about it. And I think it's wrong. Old beliefs do not trump new knowledge or research, or lived experience for that matter and it's frustrating to have them use age as an excuse when my MIL asked me to send her some resources so she can better understand what's going on.
I do my research to understand things that I don't for people I love so I understand them. My brother's child is transitioning at the moment, and I have looked into this so much to understand them so I can support them. I would do the same even if I was in my 80s (a lot older than my parents are). Age isn't an excuse, it's a cop out IMHO.

Sorry for ranting 😂

@Furries Definitely sounds like masking to me. I can have a pleasant conversation and engage with people, all while plotting how I can escape. Not all masking is intentional. If you've been doing it for years unconsciously, it's harder to spot sometimes.

Oh good lord, food heaven for me!

Welcome, I was in a similar position but quit my job to work for myself as I had the same problem. The dysregulated feeling is awful, you have my sympathies with that. My therapist has suggested journalling as a way to work out whether there are any triggers and patterns and so far, I've identified a few. Maybe worth a try?

Overheard in the nail salon yesterday morning - paraphrased but pretty accurate - a woman having her nails done while in a teams meeting on headphones
"Everyone wants reasonable adjustments now, I'm not dealing with that, half these people don't even know what they want us to adjust. " 🙄