Support thread for autistic people in relationships with NTs

[IncompleteSenten]

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?

Oh and to be all mememe a bit more, the day started off shit when the person that was supposed to come at 11 to take blood and do a heart trace thingie on my youngest that has to be done regularly because he's on antipsychotics phoned at 9 and asked if he could come at 930 instead because he'd had a cancellation and he didn't want to have to wait.

I went into an absolute flap and had to hand the phone over to my husband.

Who said yes.

Wrong answer honey, wrong answer 🤬

But we got through it. I suspect though that was why our son had such a violent reaction to the TV thing.

Those of you whose children are also autistic, do you find there's sort of a cascade effect?

My youngest autistic child is 11 and in the past has been through bad school anxiety and was a refuser. I know I need to stay calm and I know I have to deal with it but it made me feel so awfully stressed that if she did manage to stay in school after me taking her in (I often had to bring her home again) I would just go home and that would be me inoperative for the rest of the day. I used to work self employed and I found I was missing more and more when her problems escalated- not be sure of her but because of me!

I haven't read the books mentioned, but I have read Odd Girl Out. It was life changing for me. That may be because the author also has Ehlers-Danlos Syndrome like me. Very cathartic read. And quite pertinent to this thread as she is married so it charts how being ND affects her relationship

@Jennalong go to your GP and ask for an assessment. Long story short, you'll have a short form then depending on your answers, you may be referred and begin the process.

@ofwarren

I'm totally derailed too. The headmaster still hasn't come so I've been left in a state of limbo with no idea if he's coming or not. Feels like a wasted day as I've just been sat here waiting.

Yep, sorry you are the same. Shit isn't it!

@IncompleteSenten

AARRGGHH!

rant alert. We ordered a new TV and it arrived today. It's broken. Screen has been damaged during delivery. 🤦
My younger son was there and he went into the most epic meltdown. Screaming, banging things, he's trashed his room. He has a diazapam prescription pen so we had to give him one which was a battle because he didn't want to take it.

Now my head is pounding, my stress levels are through the roof. I'm basically hiding! Being as quiet as I can. My other son has locked himself in his bedroom. (that's the procedure we have for our safety during younger son's meltdowns.)

And my husband's had to go out.

Worst possible time!

When he's fully calm I need to go in and check he's not injured himself.

Those of you whose children are also autistic, do you find there's sort of a cascade effect?

Yep one meltdown usually triggers two more....

DD was telling me the have an evacuate everyone from the SN room in school too. One noisy meltdown there can trigger all the rest of them to also meltdown.... It's catching. Much better to keep as many as calm as possible... I must ask her if they move to another room in the block or are released extra stressed back into school... Cos that is not going to go well...

At home I send the kids off to their rooms so there is less transmission but one meltdown in the flat usually sets off the other two to some extent.

And if I do keep calm outwardly (most of the time) I get the adrenaline crash about half an hour later and cry/ feel like crying.

I am getting better at controlling outward appearance of meltdown but....

Me too.
I'm struggling a lot right now. The rest of the day is going to be shit and that just makes me feel worse. Which means the day will be even worse.

I'm going to go now. I'll be back later.

A zebra of course!. (Yes I know I did know but forgot, again, soz)

Narked that I am only a zebra(?) The ambiguity of a possible diagnosis....when you are autistic. Definitely hsd though.

I've forgotten what we were on about....

I'm not sure whether it's OK for me to post here. I haven't been diagnosed with autism but I am pretty sure I am autistic. I have been masking most of my life I think and find it so very tiring.

My biggest current issue is that since March 2020 DH has worked from home. Before the pandemic I worked from home anyway, in a converted garage in our garden. I loved the space I had and the fact that I always had time to myself during the day and no one to answer to. And I was better able to cope with children coming back from school and DH coming back from work.

Now he is always there - and part of his job involves running training courses. I can mostly manage to cope but involves rather more using headphones than I'd like. And I end up feeling unreasonable for feeling grumpy about it sometimes.

I've been reading some of these put to do to see if they sound familiar.

He's not a good communicator for NT though so some of this doesn't apply.

I actually spend a lot of my time desperate for DP to talk to me. I have an excruciatingly low boredom/ loneliness threshold- I think this is sensory seeking? Dp is actually less social than me. I want to socialise I'm just really bad at it. Like the Eddie the eagle of social events!

We are actually clashing a lot because I just don't find him supportive of my condition. My autism also seems linked to chronic pain which makes lots of physical tasks hard. So it's a double whammy. I get do frustrated and hate myself. And he just doesn't support me the way I want/ think he should.

It's like he gets a kick out of being the martyr who 'does everything'. I wish he'd just help me to do things for myself rather than treating me like an incompetent child!

I'd really recommend reading Sara Gibbs' drama queen book. So many similar life experiences!

@RainbowZebraWarrior

I haven't read the books mentioned, but I have read Odd Girl Out. It was life changing for me. That may be because the author also has Ehlers-Danlos Syndrome like me. Very cathartic read. And quite pertinent to this thread as she is married so it charts how being ND affects her relationship

I have EDS too, and I'm a wheelchair user.

Re the poster above, I would say that no one has ever used their experience of a broken ankle to explain how they understand wheelchair users - except that I have previously seen someone use that exact argument on MN... 🤦🏼‍♀️

What a stressful mess of a day, @IncompleteSenten. I hope your day gets better.

@hopperrock, I think you are me. I need subtitles too. Even though I have incredibly sensitive hearing, I struggle to take in any information aurally unless there's a transcript.

Just bookmarking so I can find this on the computer and read it all after work. Am diagnosed autistic and married to an NT. Will be back later to properly introduce myself!

Sorry @beyondshrinks but your post gave me the laugh I needed after a crap day!

I second the recommendation of Sara Gibbs' book Drama Queen. I read that when I was trying to figure out if I wanted to go for assessment and it was less lightbulb moments more smashes in the face of recognition.

I've downloaded Odd Girl Out before, will check that one out.

The headmaster finally came at 4:30. Annoyingly he forgot my sons reading book and said he's coming back tomorrow with it 🙈

I've just had the worst day dealing with so-called VIPs. They never ask for anything clearly, just expect our staff to be mind readers, and then complain when they don't get what they want. Idiots.

@hopperrock

NT buffoon Going to use this myself. This is a typical example from me and my NT buffoon:

Me: what time are you going to be back this evening?
NTB: we've already had this conversation and I've explained why I can't go tomorrow
Me: yes that's fine, I'm just wondering what time you think you'll be back?
NTB: well it won't be soon, I haven't even left yet ha ha ha
Me: ok so what time do you reckon?
NTB: well I'm gonna leave quite soon so probably not that late
Me: WHAT TIME?
NTB: (annoyed) ffs, I'll be as quick as I can, happy now?
Me: I don't mind how long it takes, I'm not asking you to hurry, I just want to know what time you think you'll be back
NTB: ok well you don't need to worry, I'll be home before tonight
Me: I'm not worried and tonight is not a time, use a number you NT buffoon
NTB: christ on a bike, well it depends on traffic but probably between 8 and 9
Me: thank you

He gets annoyed at me asking the same question over and over again but it's because he won't bloody well answer it

my NTB (god love him ) does a version of this with added ‘messing with my executive functioning issues’:

Me: I’m off to the supermarket, do you want anything?
NTB: lists lots of items with long, long pauses and/or changes of topic in between.
Me (interrupting): We’ve talked about this - i need you to give me lists as one block of info or I can’t remember them. Or just text me a list.
NTB: flounces off in a huff

Just GIVE ME THE FECKING INFORMATION IN AN ORDERED AND CLEAR MANNER

Oh dear. I got into a silly fight with DP the crux of was he being mildly grumpy and my perseverance escalating things because I needed him to acknowledge he was grumpy (I'd really missed whatever it was that built up to it, was second guessing a bit), and NTs really seem to struggle with acknowledging IME? Upon post-mortem it's painfully clear he just needed pick up on the 'give me some space' cues. Biggest problem with DP: he does not spell this stuff out and still expects me to just get it

@EatSleepRantRepeat

I'm putting this as kindly as I'm able, but the key thing here is we don't need the opinions of neurotypical people posted throughout the thread. This is a peer support thread for people who have autism. Please feel free to stick around and read and understand, like I might on Black Mumsnetters, but this is primarily a space for autistic people to share and strategise coping mechanisms. Unfortunately people without autism find it hard to understand that what they're posting is either a tired trope or inappropriate.

This sums it up well; it’s not that I’m not happy for NT people to read and learn and understand, but this is a space for ND women to connect and to feel (for lack of a better word) ‘normal’ for once! As a white woman, I regularly read Black Mumsnetters because I want to be an educated ally. But I wouldn’t rock up on a thread there to discuss how I sometimes felt discriminated against too - that wouldn’t be my place, however positive my intentions. My place would be to listen and learn.

When you’re in the majority - whether due to race, being neurotypical, or another factor - it’s very easy for forget that your voice is not central to the discussion and that you need to step back.

I also agree that @EatSleepRantRepeat sums it up well. I also read some of the Black Mumsnetters discussions as I find it helps me understand. But I wouldn't dream of jumping in as I can't possibly truly understand their struggles.

My Mum describes a similar thing with cancer. She is living with cancer and has been for a few years now. She hates it when people who don't have cancer try to wade in with anecdotes about a cousins friend who beat it by taking some sort of supplements. Or by just feeling positive. Like you can 'will' it away, or aren't trying hard enough. She doesn't mind too much when people with cancer want to talk. But even then, she doesn't want it to be a pity party, to dwell, or to play Cancer one upmanship.

Hope that makes sense

People like that give me the rage @RainbowZebraWarrior - as well as the online woo, it was the nonsense about "fighting", "the battle against cancer" etc, like somehow my knackered, ill mum somehow wasn't trying hard enough. Sorry to hear your mum is poorly - my mum got the all clear 10 years ago now but she's still not mentally over it.

Absolutely shit show this evening when I returned from work. I could hear my 2 DSs screaming as I pulled up in the car.

Feel awful as I didn't communicate with them that it would be DH picking them up and not me. I'm just so shit at remembering this stuff for them, which DH (and me) finds infuriating because I need to be told this sort of thing. I always need these pre-warnings so why don't I remember they do too!

DH, or rather NTB, has no sympathy for our eldest DS though, he had just left him with his school bag and coat still on, hyperventilating in the kitchen. Broke my heart to see him like that.

Total evening written off now of course and I know a whole evening of meltdown like that means restless night all round.

Comments thrown at me by NTB..."He just needs to learn he can't have it his way all the time" and "he needs to grow up and realise its not how the world works" and "stop bloody defending him, he is wrong for screaming like that over nothing" 💔 NTB has no idea

Came back to catch up on this thread and I can’t overstate the eye roll I did when I saw that we’ve already attracted a BuT eVeRyOnE dOeS tHaT comment already. I swear, my eyeballs nearly fell out.

ANYWAY, today was my first proper day of work (I’m a grad student but I had meetings and stuff for the first time this year) since before Christmas so I was already a bit anxious. We are getting some work done on the outside of the house next month and a woman from the company phoned me and announced that she was coming to take photos. She couldn’t give me an exact time either so I went into ‘standby mode’ and couldn’t do anything until she had been.

I have been angry and on-edge all day because of it, I feel like my skin is fizzy and I’ve had to turn the lights off. Ugh.