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Neurodiverse Mumsnetters

Use this forum to discuss neurodiverse parenting.

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Support thread for autistic people in relationships with NTs

648 replies

IncompleteSenten · 08/01/2022 19:36

I am autistic. (Diagnosed). I was DX as an adult after both my sons were DX and the professionals involved with them began to raise it with me.

Female autism typically presents very differently in women and is often missed and so we go through years of our lives feeling weird and confused and all sorts and just not knowing why.

My husband is NT. It can be really difficult. Its not his fault, it's just how it is but I thought maybe if there are a few of us we can have our own thread where we get to chat and talk about things we find hard and perhaps give each other advice?

OP posts:
hopperrock · 15/01/2022 21:04

It was like opening the button on your jeans after eating too much. That sense of relief and being able to expand without restraint.

I love this. I think partly I am worried about everyone's reaction to finding out how fat I am Grin

BarrowInFurnessRailwayStation · 15/01/2022 21:41

My dh sometimes tells me to just deal with it because I'm an adult. I feel like shit when he says things like this.

EatSleepRantRepeat · 15/01/2022 22:36

That is really not on @BarrowInFurnessRailwayStation, but I'm sure you know that! It harks back to the idea that autism is a kid thing too Angry

I think you're all troopers for putting up with the shit your DPs come out with sometimes. As much as DH and I can wind each other up occasionally, he is definitely my emotional support human when it comes to the autism. He does all the little things like reminding me to eat and take my tablets, even though I snap with "I KNOW!" when I'm having a bad day Blush

I had a good day today. I went out with a friend to a museum who's really understanding of my stuff. Took a valium before I got on the tube which got me through having to wear a mask - I know I'm technically exempt but I really try to wear one for short periods in crowded spaces for mine & DHs benefit. I'll probably get the delayed anxiousness in the middle of the night but at least its for a nicer day out.

LilyRed · 16/01/2022 00:00

@hopperrock Do not worry, I have been a 'woman of proportions' for some years - I was diagnosed with a particular type of epilepsy - finally, after many problems- about 20 years ago. When you are diagnosed and given meds to control it, the first thing usually the GP says is that "these tablets will make you put on weight" and my goodness did they ever. It's very difficult to shift as one has to keep taking the bloody tablets...

I eat properly and exercise as much as I can, do a lot of gardening, but I accept myself, my DP accepts me and know it doesn't change who I am and if anyone judges me then they can just bugger off Grin

This thread is about acceptance, nobody here judges (except my atrocious spelling Wink ), so you are great!

LilyRed · 16/01/2022 00:24

@BarrowInFurnessRailwayStation you need support from your partner, not that rubbish, totally unhelpful. Frankly, you are dealing with it like you, an NNT (a NNT?) person and could do with his support. He is an idiot for saying that. DP occasionally tries this but does not get away with it.

If you are like me in the adulthood diagnosis path (I'm close to 60 btw!) then we never learnt coping strategies as kids and muddle through as best we can now, err... as we have done all our lives.

@EatSleepRantRepeat which museum did you go to? my idea of heaven! I did voluntary work as a photographer and illustrator for the Portable Antiquities Scheme at the local museum in the last place we lived in England - here in Scotland they have never heard of it!

It was our 22nd anniversary today and DP gave me a lovely copy of the bird pin found in the Galloway Hoard, I was over the moon as I have kept a close eye on this amazing find.

MIL then proceeded to make huge arguments for the rest of the day and it has been a miserable evening with a severe case of leg jogging that will not calm down because of stress and what always feels like a scribbly head.

I don't think diagnosis has made me 'wear the mask' more or less than I ever did, I still mask in public except to closest friends.

AutisticLegoLover · 16/01/2022 10:17

I'm fascinated by the comments about popping your top button as it were. I love that metaphor. I've found as I've got older I no longer tolerate as much nonsense and went NC with a lot of my family who class me as awkward, difficult, opinionated, wrong on many levels and the like. I've felt much happier since. I'm not awkward, difficult etc. sometimes I'm opinionated and wrong but I'll admit if I'm wrong. My opinions are pretty much cast in stone though so yes if they differ from my families then it's an issue. I'm not sure about masking. I must do to have achieved what I have but it's been at a cost. I too struggle with more than a couple of weeks at work without needing time out. My masters lies abandoned for years and I've given up on that as it was what I expected of myself rather than what was necessary for me. I'm now working in the loosest sense of the word helping a widowed gentleman clear his house. It's perfect for me. I digress. I no longer force myself to attend social events with people I barely know after trying to find justifiable reasons I can't go. I find mumsnet to be ideal in terms of social interaction. I tell people I'm awaiting assessment if it's relevant. My mum is certainly more tolerant now she knows. The rest of the family can still fuck off.

hopperrock · 16/01/2022 10:26

This thread is an absolute godsend to me, thank you all. Another question for those diagnosed as adults, who did you tell and what kind of reactions did you get?

elelel · 16/01/2022 10:33

I have read so many people talk about unmasking but pre diagnosis I didn't understand it. I thought the actively did something to change how they were. I couldn't have been more wrong. My mask has slipped without me pushing it. The biggest thing for me has been letting go of things I had no idea I did or tried to be simply because I thought I had something to prove. Other peoples views of me mattered. I think because I had no way to fully understand myself I needed others just to see I was succeeding so I could try to feel that? I don't let many people into my house, I'm quite guarded but equally awful at housework and we have a few less than ideal maintenance bits needing done but I can't face them. DS has said for years that not everyone has a show home and things like this are just normal everyday life but I couldn't get past the idea that for someone to come into my house it had to be what I thought houses are like. DS used to take pictures in his friends houses to show me that they don't all have the house i thought I needed! I have realised now that it's me and mine and there is nothing wrong with it, people have houses with jobs needing done. The same with my job, I actually gave up a job I hated a few weeks after diagnosis because I no longer felt I had anything to prove. I was able to just stop work; not ideal financially but the immense mental release is worth it a million times over. Being able to 'settle' myself over things I have spent 30odd years trying to give or show people is worth everything.

ENoeuf · 16/01/2022 12:01

I have a question about friendships. I don’t know what’s normal etc. I have a couple of friends who would meet up / we do meet up. But are other people seeing friends / have more friends? I think I’m confused by things like work colleagues - they all go out together (from Facebook) but I don’t with mine. Also , I don’t like lots of people (like I don’t dislike them but I wouldn’t want to hang out with them). But maybe I just want to be a different person - Maybe I don’t like me? And why? Have I learned this from school and family etc? That I’m weird?

elelel · 16/01/2022 12:18

I don't really have friends that I meet up with. I'm not interested and pulled back from this a few years ago.

AspersionsNasturiums · 16/01/2022 12:33

@hopperrock

This thread is an absolute godsend to me, thank you all. Another question for those diagnosed as adults, who did you tell and what kind of reactions did you get?
A range of responses. The thing is, you know how you see your diagnosis (or at least you have a muddled bunch of feelings about it) but you can't know how people will receive it or what they will think.

I find with other people that I sort them into categories. This is the first time I've talked about this so it might be a little muddled. There are the tricksy difficult people where I get physical internal anguish dealing with them. I will avoid them or deal at the minimum possible level.

There are people in general.

There are people who don't quite get me or who I'm aware that I'm a bit off the mark dealing with but I like them and they like me and so to me they're worth investing the bit of extra overhead that the relationship entails. But I'm never properly me with them.

Some people say "Oh right. My brother has autism.". Then they move onto the next thing.

Then there are the "safe" people. I can relax around them. They don't find me weird. They accept me. I don't have to be checking myself all the time. They are so rare.

Some people just nodded a silent "of course". Mostly the "safe" people.

Most people just say "oh". Good luck interpreting that.

Some people (a few quite violently) denied the possibility. Sometimes because it was a surprise and they'd always seen me mask on. Sometimes through ignorance - "My friend's son is autistic, he can't even speak. You're not autistic!"

Some people have wanted to know more, to understand and have asked questions. But it's so hard to explain. Someone at work asked how it was best to talk to me. I always say to be direct and clear and say what you mean. But it gets difficult when I try to explain "the overhead" of constantly double checking and gauging yourself and working out the ways the conversation could go if you don't get it right and trying to interpret the messages that you're getting. An example I gave to one person is that if a colleague says "Have a great evening!" it completely throws me off, because my train of thought is "well, on average I'm going to have an average evening because I'm just a normal person who will finish work and have a meal and some not-work time and go to bed, I don't even know exactly what I'm going to do this evening anyway and frankly what business is it of yours whether I do or don't have a great evening and if it's not a great evening should I feel bad about that and do you want to know if I didn't have a great evening because you probably don't even care if I do or not, you just made some pointless noise and now I'm having to process it".

The take-away of the person I explained that to as an example of the overhead was "OK I'll make sure never to tell you to have a great evening.". I need to find better ways to articulate this!

The experience of the responses I've been getting is what has guided my adoption of "I have a diagnosis of autism", which is objectively true and they can't deny it.

RainbowZebraWarrior · 16/01/2022 12:51

I also understand the headfuck of "have a great evening" It's so odd. It's not like you've just announced you're off to have dinner with the Queen. And yeah, it just makes me feel a bit shit that I probably have a dull life. Even though it's my preference.

I might text a friend "hope you enjoy your evening" if she's just told me she's having a takeaway for example or my Mum "hope you have a quiet evening" as I know that's also her preference. I guess it's the element of taking things literally.

Regarding friends in general, I have a best friend from school who is very similar to me and is probably why we were drawn to each other. I am constantly agog at people who are at 4 and 5 weddings a year with associated hen parties etc. How do they know so many people? Maybe they have large families. I will occasionally make acquaintances with others. Usually Mums of DDs school friends. I'll accept an invitation to meet up, then panic wildly and wonder why I got myself into such a situation. So I'll cancel then fade away. For this reason, MN also suits me as far as 'socialising' goes.

hopperrock · 16/01/2022 12:52

Thank you Aspersions, your posts are amazing and so helpful to me. Your categorisation of people makes so much sense and this bit in particular has made me cry. I have many people like this in my life, mostly colleagues who are very nice people, and I have never understood what's going on there.

There are people who don't quite get me or who I'm aware that I'm a bit off the mark dealing with but I like them and they like me and so to me they're worth investing the bit of extra overhead that the relationship entails. But I'm never properly me with them.

RainbowZebraWarrior · 16/01/2022 12:57

I am also a 'woman of proportions' @LilyRed and have undone my jeans button, never to be done up again. Both metaphorically and very much literally

ENoeuf · 16/01/2022 14:22

‘am constantly agog at people who are at 4 and 5 weddings a year with associated hen parties etc. How do they know so many people? Maybe they ‘have large families. I will occasionally make acquaintances with others. Usually Mums of DDs school friends. I'll accept an invitation to meet up, then panic wildly and wonder why I got myself into such a situation. ‘

This is so interesting as I really recognise myself.

ofwarren · 16/01/2022 14:51

How much do you rely on headphones? I have to wear them numerous times through the day to mask sounds of my kids mainly...
I have Sony ones but they aren't doing the trick any more as they aren't close enough round the ears to fully block the sound so I have to have music up really loud.
I just mentioned it to my DH and he said he's going to buy me the expensive Bose noise cancelling ones 😍

AspersionsNasturiums · 16/01/2022 14:57

I bought some second hand Bose ones from CEX and replaced the earpads. I've also got some little in ear buds that I use when walking or running.

I don't use the Bose ones at home so much but used to use them in the nightmare open plan office at work. I would sometimes use them just to noise cancel (heaven) but sometimes would just put them on as they seemed to stop people casually talking to me.

ENoeuf · 16/01/2022 15:40

I often keep headphones in after a call. I like the blocking of general sound.

ofwarren · 16/01/2022 15:48

@aspersionsnasturiums
Does the noise cancelling work? Does it make it silent or just duller?

AspersionsNasturiums · 16/01/2022 15:50

[quote ofwarren]@aspersionsnasturiums
Does the noise cancelling work? Does it make it silent or just duller? [/quote]
It's not perfect but it's really not bad at all. It can be a bit disorientating at first!

ofwarren · 16/01/2022 16:18

What about stim toys? Does anyone here use them?
I use a fidget spinner on and off through the day. If I don't use it, I rub my fingers together a lot.
I tried those popper ones that are supposed to be like bubble wrap but I wasn't impressed with it.

EatSleepRantRepeat · 16/01/2022 17:33

I went to the Victoria & Albert Museum in South Kensington @LilyRed - it's such a beautiful building and unlike the others, it's not a kid magnet, so the noise levels are very low and it's often low lit to preserve the art. I love the science & natural history museums exhibits but its like trying to concentrate in a children's playground - I looked into if they have a members room at the science museum but you have to be a patron there at £1000 a pop Shock

Has anyone got any recommendations for quiet bolthole you use when out in town? I used to pay for a co-working space as a quiet base between short activities in London, but now a lot are underused, so not open at the weekends at present.

Re the friends thing, I tend to drift and find that I make friends with one or two people per workplace. I have one friend from uni, 2 friends from workplace 1, 1 friend from workplace 2, etc. I don't have any sort of friendship group because none know each other and are quite solitary characters themselves. I've only ever had 1 party in my whole life as I don't organise any, I can't rely on people to turn up either - everyone in my hen party dropped out so we went fron 15 to 3 people, all teetotalers who went home at 9 😂 but they were pregnant so that's understandable!

EatSleepRantRepeat · 16/01/2022 17:36

I have the Bose ones from work @ofwarren. See if you can test them out for 10 mins first, though, because the active noise-cancelling makes me feel quite sick. I can hear a tiny high-pitched whine, which makes me feel a bit dizzy, but other people I know who try them say they have no problems.

AutisticLegoLover · 16/01/2022 21:24

Museum's with my dc are tricky and I find it overloading as there's so much to see and read but I'm having to check that ds is still close by. The dds are old enough to go off by themselves but ds isn't so I'm flirting from exhibit to exhibit like a deranged butterfly but less graceful.
I really identify with whoever said about social invitations then wondering how you ended up saying yes and panicking about it. I used to say yes because that's normal and I tried to be normal. But then I'd get anxious and wonder how to get out of it without looking like I was weird or with a crap excuse. Now I just say that I'm sorry but I can't make it. Big group things and no one cares anyway. I'm probably viewed as the antisocial one but I'm also the only single parent with no childcare and can rarely go out anyway. That suits me just fine. Maybe that's me no longer masking and accepting myself.

AspersionsNasturiums · 16/01/2022 21:36

@hopperrock Thank you for your kind words. I'm very happy that it's been of help. It's certainly helped me having the opportunity to formulate and externalise these things for the first time.

This thread has been very helpful for me, finding commonality of experience and such an understanding community.

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