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. 🤣

Grrr to your sister. I hate the "oh, I once knew / was a special needs assistant" trope. Even if they did, it's still not their place to comment. Nobody knows what it's like to be you, and surely folk realise that we keep a lot of stuff hidden / private. Oh, but then of course we get the "But everyone is a bit like that" if we ever try to open up about our struggles. My mother is fully on board now, both with myself and my daughters diagnosis, but in the beginning it was "but everyone is a bit shy sometimes" By the time she had saud that for about the 20th time about a dufferent trait, she realised its about the cumulative total of things. I can excuse her a bit as it's possibly a bit of guilt from not noticing and denial (I've never made her feel bad about it btw)

I hate the fact that we don't fit into people's ideas of what we are supposed to be, what they have read about, or their stupid, ignorant, limited experience. Guess what, ND people aren't homogeneous and all have different symptom profiles.

Yes, I have arguments and conversations in my head most days with other people. I guess it's mostly to say the things we often can't say out loud. And to practice saying the things we really want to say in advance/ next time. Doesn't always work, but I'm much kinder to myself these days about it all.

Oh, and my ex said to me that his mate was an special needs assistant. Imagine his surprise, when his mate actually found out he was "40% Autistic himself" I don't know if this was misheard bullshit, but either way I was sick of the misconceptions and gross deliberate misunderstanding, so I blocked him.

Sorry about the rant! 😆

Here's my Christmas tree.

I genuinely thought everyone had arguments in their head. I know now that my sister and her 'once upon a time SNA' other half are sitting going 'she doesnt present as autistic' and I didnt either. The diagnosis is that new that I still am baffled at it (not so much the adhd) but I will do a bit of deep divng as I paid 1000quid for the diagnosis to a top clinical psychologist and psychiatrist who specifically deals with this in adults but I know they are sitting ripping me apart. Im the scapegoat child in the family so no matter what I do it gets minimised or I get put downs and you get so used to it but not anymore. I need to assert myself better.

@Psychoticbreak I think we all know and understand what it's like on here to feel dis believed. Also, with regard to diagnosis, it can take a good few weeks to sink in, and that's when you've been expecting one. Be kind to yourself.

I'm the scapegoat child in the family so no matter what I do it gets minimised or I get put downs

Same here, which is why I blocked my two remaining bitchy sisters after my dear autistic sister died four years ago.

I’m fairly lucky in that my family are pretty decent. My 20 year old cousin has been suffering with health issues recently and was diagnosed with IBS. It’s also highly likely he has ADHD, and he’s spent many years masking, which caused him really bad anxiety which exacerbated the IBS. I don’t think he has a formal ADHD diagnosis yet though. My brother is also waiting for an ADHD assessment, my mother reckons she might have it, we also suspect my dad has AuDHD… we’re a fairly neurodiverse family. I’m the only one with official diagnoses though.

We haven’t got any Christmas decorations yet. We tend to wait until mid-ish December to get a tree. I’m the one who decorates it usually. I’m still living with my parents and have never ever had a relationship so no kids to think about.

Melatonin is a godsend! That research a couple of years ago about how over 90% of autistic people have significantly disrupted sleep and how effective melatonin had been found to be was eye opening for me. I still struggle, mainly because I have too much to do each day and need downtime to function so this has to come at the expense of enough sleep, but melatonin has helped me so much. At least when I do have time to sleep I can actually get to sleep, usually. There is nothing worse than being exhausted and not being able to switch off the washing machine brain churning over and over.,

Yes!! Same here. Totally exhausting, "rehearsing" everything.

Love this!!! 🎄🌈❤️🧡💛💚🩵💙💜

Hey Rainbow, your tree looks amazing!

Well, we went to DS's flat and I was delighted with what he's done.

TBH it was untidy, but I was expecting that, and he made me a cup of tea and we sat and chatted for a while - and DH fixed his cooker which the flooring guys disconnected accidentally yesterday.

He has a gloriously disorganised way of putting things in a room - but it's his safe space now and it is important that he doesn't think I'm interfering, so I decided just to tell him it looked great. And if I'm honest, it did. He hadn't put things where I would have done but that doesn't matter - I don't have to live there, and because it's on the second floor I can only visit very infrequently (physical disabilities stop me from getting up and down the stairs with any ease these days).

He is so pleased with it all.

Now we just need the ADP to be awarded asap - and that is worrying me - but again, there is nothing I can do about that now. It's just a waiting game.

God, me too. I was always the scapegoat, always blamed for everything while treated appallingly, always the doormat and emotionally blackmailed into tolerating this. It is only in the last couple of years that I've finally stood up to it and that has been met with a lot of anger and gaslighting and no apology or change in behaviour whatsoever. But I call it out now every single time, and have put new boundaries in place.

I also have the "you're not autistic" crap from family, who have refused to learn anything about it. They do it so they can refuse to make any allowances for my needs and justify their behaviour. I offered to send them articles/ research to read many years ago when I was diagnosed and they couldn't be bothered, yet still feel entitled to spout their ignorant "opinions" on everything. And now both of my children are also diagnosed they do this to them as well. They can't be autistic because a friend of theirs who has never met my children and was a primary school teacher 20 years ago says so. Or because they make eye contact, or have friends. 🙄

I have to remind myself of this:

m.youtube.com/watch?v=EQc6Z8k9vbI

@TheShellBeach so lovely to hear how happy your son is. Making the space his own, that security and freedom and a safe space to retreat to of his own design, it is worth so much. Well done for helping him get out of such an awful situation and into this position, the start of a whole new life for him. He is very lucky to have you.

I was also the scapegoat, never connected it to my ADHD/ASD.

I've had a busy couple of days so I need tonight to reset and chill - totally bombed out on doing shopping today - pulled into the carpark at B&M and thought no that's too busy so just drove round and out again and home lol

@Nepmarthiturn yeah I feel bad now cos I thought autism was something completely different so I feel fairly ignorant to be honest so I think that is why it has hit me so much but I will look into things. I know when I was looking at adhd traits there was many a lightbulb moment but never occured to me I had asd.

@Psychoticbreak no need to feel bad! One of the benefits of diagnosis is that you can finally stop beating yourself up about things that were not in your control. How could you know about ASD in women, if you'd never had any reason to suspect it or been given any information on it? The big failing really is the health professionals who know so little about it and frequently diagnose autistic women with depression, anxiety, OCD and allsorts without ever considering ASD because they are ignorant of how it manifests in women/ girls, when it's their job to determine potential diagnoses for the issues a patient reports and test them/ rule them out. And all of the teachers etc. who doubtless failed you in this way also, like so many of us. It's not your fault at all, to not know, because how could you? This is a time for self-acceptance, self-understanding and giving your younger self who struggled for all those years without knowing why a huge metaphorical hug (if she likes hugging 😆). And to look to the future where you can be much kinder to yourself and know your own needs, and design a life that works for you.

Ha! Totally get that. I don't go to shops but so many times back when I used to, I would get there then just leave. Brain said "nope!!!".

I hope you have a lovely relaxing evening @rorret . Christmas I think can be a time of year to be kind to ourselves, escape all the usual obligations and just "be" for a while which can be so therapeutic. As long as stressful people/ situations/ obligations others try to place on us are fiercely resisted!!

The big failing really is the health professionals who know so little about it and frequently diagnose autistic women with depression, anxiety, OCD and allsorts without ever considering ASD because they are ignorant of how it manifests in women/ girls

This, with bells on.

I was (wrongly) diagnosed with a personality disorder twenty five years ago and my oldest sister was thrilled - she told all our relatives with great glee that "there was now a reason why I was so weird" (her words, not mine) and she never once considered that my obviously autistic sister was autistic - oh no, she was lazy and disorganised and had been a problem since childhood.

FFS it's no wonder that I eventually blocked my oldest and youngest sisters. Pair of bitches.

..................pulled into the carpark at B&M and thought no that's too busy so just drove round and out again and home lol

Oh wow - I've done that so many times.
Nowadays I get all our shopping online, thankfully.
And even though we're in a remote village, it is possible to collect Morrison's and Tesco's groceries from the next village along.

That is horrendous. I'm so sorry that happened to you AND then it was compounded by family using it as another way to belittle you. It can be such a relief to remove toxic people from your life when there is no way to change things with them, so well done for doing so.

I am trying with my remaining family to call out their spiteful behaviour every single time and robustly enforce boundaries in the hope that we can maintain some semblance of a relationship that way but it is exhausting, and they continually, deliberately ignore and try to override the boundaries and ignore me when I highlight their damaging behaviour so I think we are nearing the end of the road because I just cannot tolerate it anymore, and now that the same behaviour is impacting my children too "suck it up and accept it" has ceased to be a viable option because I have to protect them.

@Nepmarthiturn It is remarkably freeing to block horrible people, especially if they cause so much dismay and discord.

I have never felt so wonderful since I blocked my sisters - they have nothing to do with me, nor I with them, now.
In fact, my oldest sister was also unbelievably cruel to DS at one time.

My other three children have also blocked their aunts. Ugh.

Thank you all for your kind words and responses. I still have not had a chance to look into things but I dont 'feel' autistic or the vision I had in head of someone with autism as an adult. I have been around children with ASD though.

Did anyone think they were misdiagnosed? I fully agree with the adhd but would have said ocd. I am super organised, super clean etc. I say I have a good memory but I carry a diary everywhere to write things down so maybe thats the only reason I have. I can multitask although I say that and what I mean is type on here and watch eastenders at the same time but then I am not really paying attention to the tv. I really dont know and a part of me is a bit scared to look into my 'tick boxes' cos I had myself in one and now I need to spread myself to another and it is a bit overwhelming. Also got naff all sleep again last night so knackered along with it all.

@Psychoticbreak I am very neat and tidy too, and I can easily multitask.

Can you say what it is about autism which you feel doesn't kind of apply to you?

I've always been very bright academically but there are some concepts I just can't understand, no matter how many times they're explained to me. For example, I don't understand why planes stay up in the air, and I can never remember if the earth goes round the sun (or the moon) or vice versa.

I have no idea about tides either. What are they? Why do they happen?

And yet I can remember the whole of the second alto line of The Dream of Gerontius and Messiah and many other choral works, without referring to the score. I can play the organ, piano and violin and I can deliver babies.

I can recall very minor details and minutiae about true crime.

Also, throughout my life, people have either really liked me, or absolutely hated me. Until I got my diagnosis, I couldn't understand that. It really upset me.

My diagnosis has helped me to make sense of my life.

@Psychoticbreak do you identify with sensory issues? - strong preferences for certain textures? And an absolute hatred of others Food aversions? Issues either noise or particularly competing noises? If so, how does it make you feel. Overwhelmed? Angry? Upset? Unable to cope?

What about communication issues - things like clamming up completely or totally oversharing?

Socially are you awkward / shy / feel like running away or hiding when faced with social situations?

Do you have any stimming that you are aware of? Awkward ways of holding your hands?

All of these are ways that I'm affected and they are all traceable back to early childhood. During my Autism assessment (3.5 hrs) I went though all these things and more in detail. That's not to say that all Autistic women would fit that profile, but it's something I seem to have in common with a lot of late diagnosed females when I've discussed it.

My assessment and diagnosis was carried out by a consultant Psychiatrist via Psychiatry UK and they do separate assessments on separate days for ASC and ADHD. They also require separate questionnaires to be completed in advance (to initially score traits to see if it meets threshold for actual assessment) and then lengthy pre assessment forms for each diagnosis with evidence from childhood of traits in specific areas in order to build up a detailed profile.

I don't know if it would be worth it for you contacting who you used and asking some questions if you are feeling confused by it all (or if none of the ASC things ring true with you) I know I had loads of questions post diagnosis, and went back and forwards emailing my consultant for a couple of months afterwards.

Sorry, by the way. That looks a bit overwhelming. Was trying to help to see if anything clicked with you.

Morning all. I think my issue is that I have not as yet googled autism. I know a few kids with it but they are non verbal (and I am the most verbal person around lol) and I really am embarassed to say I have totally been totally ignorant to what autism is or means and a bit afraid to google. How strange is that for a woman in her 40's? I need to take an hour or so to sit and google and see what it is and means. I have downloaded 3 books on it to listen to on audible but of course I have to finish what I am listening to first before I kick off with them.

Will read back now and respond to messages. I had my mum on the phone and it is something I need to stop because for one i dont like talking on the phone but for two she witters on and on and never gets to the point and I just dont listen to her and her voice is monotone too which hurts my ears. Anyway shes hung up now so I can focus on reading the messages.

Yes very bright academically but have never studied in my life, I just cant and thats holding me back a bit as I have done and failed the same exam now 3 times (im in college part time) because as a kid I was so used to just sailing through but this actually takes concentration which I do not seem to have although saying that I put in 3 hours last night and a good 2 hours may have filtered through!

The other stuff about the moon and tides and things that would not enter my head as it does not actually affect me but say neither would true crime and I read about Jeffrey Dahmer and Denis Neilson when I was about 10 and knew al the details about both cases before any documentaries came out as they stuck in my head.

Yes I am also a marmite person. I did used to try to get people to like me but it wasted so mucbh energy so I just decided I didnt like people and I can be in a room with 10 people, know about 8 of them and like about 3 and if i only like 3 it is like the other 7 do not exist if that makes sense. They may as well be invisible. I come across really rude that way.