Married to someone with Asperger's/ASC: support thread 7

[Daftasabroom]

New thread, and as previously:

This thread is for partners seeking to understand the dynamics of their relationship with someone with ASD. It is a support thread, and a safe space to have a bit of a rant. Avoid sweeping generalisations if possible, try and keep it specific to you and your partner. (ASD partners welcome to lurk or pop in, but please don't argue with other posters and tell them they are wrong)

Ive looked at that model before. It doesn’t work for me.
It insists that society makes adjustments which are essential. There is no discussion about that the need to make reasonable adjustments.
I disagree though that society will be able to remove ALL barriers regardless if the impairment.

ME means I’m more or less housebound. If I need to go out for a medical appointment it will set me back for days.
I could expect society that will have a system that will allow all HCP to come to my house or use télé consultations . So I don’t have a crash. Not sure how I could have got the électrocardiogramme I had recently. Or if I needed an MRI etc….

Autism p, just like ME, can have many features. Expecting that someone with sensory issues can wear the clothes that are confortable for them is fair enough. The miscommunication is another thing altogether.
The way I see it

• autistic people struggle to get NT conversations, all the implied meaning etc…. They find that exhausting and in some ways unachievable. Some use patterns to help them make sense if things but it doesn’t always work.
• NT struggle to understand an ASD mind and how they react too. Reading around autism helps (eg I recently realised that dc2 picking his spots in his face all the time is probably stimming) but it still doesn’t get me anywhere close to understand how his brain (or DH) works because he doesn’t make the same relation between things as I do. So believe that expecting an NT to understand the ASD mind is unachievable and exhausting.

We’re back to have different needs, incompatible with each other. I dint believe there will ever be a society where people with ASD will automatically be understood and where NT will always speak in a way that make sense to ASD. Some things can be put in place. That ALL struggles will be removed? Nope. No more than it is possible for me to expect the MRI to come to my house.

Unfortunately disability sucks. And imo a theory will not remove the struggle from the disability. It might make it better in some ways. But it won’t remove it.

Just to pick up on this @DeepThought42

It won’t make it any easier for me, or any other NT, to respond natively and against my NT instincts in our interactions.

I do think the issue is more incompatibility that autism because what's being asked of autistic partners here is that they not respond natively and against their ND instincts in interactions.

And to me, that means incompatibility. Not autism. I'm now in a relationship with an NT man and I don't hand to temper my responses. He lets me respond natively. If it was just autism then I wouldn't be able to have a relationship with an NT man.

*don't have to

Can I ask - did your DH2 understand that you were autistic from the start and did you explain upfront - I'm different and there are certain things I can't do - or was it more organic than that? Can I understand more about how he was able to understand you from the beginning?

No but because of where we met our relationship grew organically - we met at work and I was obviously physically disabled (I use crutches) so he always knew I was different. Just not autistic. I didn't tell him from the first time we met if that's what you're asking because we met at work.

It sounds like touching is very hard and a big red line for you - so how would you handle that? How do you share things? Sorry if this is too much to ask - again no pressure to answer.

Touching from people I don't know is. I just keep a distance - the sticks are handy for that because it's not so easy for people to get near me. I love my partner touching me in private but I wouldn't be comfortable with touching in public. He's never attempted to hold my hand in public (see above re sticks aka crutches). I hug my DC who are happy to be hugged when they prompt for it (they are adults).

It also would appear on this forum that you are a very good communicator - you can explain your feelings well and we are all very much learning and understanding more from you. Your sensory side though is a challenging area for you?

It's very much easier to write than to be in a situation where im already stressed though. Im at home in my study answering this - im not in a restaurant where im overwhelmed with noise and smells and omg what about the food how do I talk to the waiter what if I get something wrong remember to make eye contact I've a stone in my shoe ans my trouser label is crawling through my skin and the light is annoying and I forgot to say thank you

The two are linked. My ability to communicate goes out the window in that sort of scenario. Also. Im factual and I have to remember to say "I appreciate you telling me" or "im sorry you had that experience"

I wasn't suggesting every person in the world have a deep and intimate understanding of every aspect of the autistic brain @VahineNuiWentHome - just that if the world were more generally autism friendly it wouldn't seem like such a huge deal.

Case in point, my DS attends a specialist dentist service, the room he goes into is less clinical looking, lower lighting and they check his teeth while singing his favourite song to him and spinning him round and round on a spinny chair. Consequently, he quite likes getting his teeth checked. IMO this sort of tailor experience should be available to all autistic people that need it. I, on the other hand, have spent years suppressing panic attacks in my regular dentist surgery, due to being conditioned to think that I should. And I have trauma from being held down as a child.

Can I ask how you think tailor-made dentist surgeries etc would help an intimate relationship between someone with autism and someone without? I'm not saying that these thiings aren't helpful but I don't really see how where my husband gets his teeth cleaned would help us communicate better in our marriage or help dh respond in a more empathetic way when I get ill or am upset for instance? Maybe I am missing the obvious though?

I was giving one example of how employing the social model of disability can help give neurodiverse people a chance at a happy life. If you're expecting me to set out my social model relationship manifesto on here @leithreas I think you're possibly jumping the gun a bit.

All I can say is lots of NT/ND manage pretty well. Maybe they could share what works for them. Instead of, yknow, coming here and blaming autism for all their problems.

The touching one is very personal to each and every autistic person IME @bestchristmasever. I am absolutely fine with touching and being touched by my husband and kids, in any context really, especially my kids who I almost see an an extension of myself. My husband too, as we have been together 17 years now and we are like a couple of old slippers that have been worn in.

Both of my children are very tactile. My DS (diagnosed level 2 ASD, ADHD, SPD, ARFID, learning disability) needs it for self regulation. He has foot massages at school and is very cuddly with his TAs. My DD more wary of strangers but very tactile with close family,

I have some very touchy-feely ND pals. And some who are like 'Noooooo'. If someone comes to hug me I will reciprocate, but I wouldn't initiate. My friends know I'm not into hugging and don't care.

I agree @jamoncrumpets I was just answering the question from my own perspective (who h is what I thought I was being asked).

I take issue with lowered expectations as a phrase. It is a different expectation but it isn't lowered.

It's just difference. It's not right or wrong. It feels like what you're saying is That the ND person is wrong in how they behave or react and that's not helpful or fair. It just is what it is. It's not a good strategy to ascribe or infer right or wrong.

Because that leads to blame. And blame doesn't lead to understanding and a way forward.

Which makes me sound like a bad self help book but that's hard won experience talking not anything else.

The world would be easier for ND people if NT people didn't expect them to react like NT people do. I don't expect anyone to react any kind of way - I just take people as they are - I don't read into things I just take things at face value.

I was expecting you not to derail the thread tbh.

My ASD/NT marriage works ok. For it to work ok though I have had to change a lot about myself. I have become a far more blunt, less emotional person. To use the examples I gave above about things that help dh show empathy I have to give very straightforward instructions for eg I had a bad day at work, I'm going to talk about it now and need you to listen without looking at your phone. When I am done talking hug me until I pull away. Dh loves me and wants to meet my emotional needs so is happy to do it with a blueprint laid out for him. The same goes for when I am sick. My arthritis is bad today dh, I need you to walk the dogs at x and y time, the children have to be fed this for dinner at x time, that means you will have to start prepping it at y time. Dd has dance at 6 that means you will need to start checking she is ready at x time, then check again at y time, then leave at z time. Then I follow it up with a text of written instructions.

When I have a problem in our marriage I give a warning by text that I need to speak to him about something that is important to me, I give a brief overview of the problem and say I would like to talk about it after dinner tonight, if work has been overwhelming today let me know and we can schedule it for tomorrow instead. Then when actually talking about the issue I use simple language and make sure that any questions I ask him are yes or no questions because he finds it hard to articulate himself when he knows I am upset at him and can become quite mute.

All of this and more is obviously a lot more work than a marriage with someone that just instinctively 'gets' it would be but for now the good times are far more than the bad, we share the same sense of humour and I love him very much and I know that he loves me too even though he shows it in a very different way than I would naturally like so it is worth it for me. It has become less jarring with time that for instance when I am upset I have to say 'Will you give me a hug?' rather than just expecting for him to comfort me. I splot myself on the couch beside him and ask him to stroke my head for instance rather than just waiting for him to naturally show affection and being sad when he doesn't.

That's quite long and rambly and I suppose only really works for me because I do love him a lot and want our marriage to work and I know that he does too but just doesn't have the right tools for it to come naturally for him. If there was a sniff that he didn't want it to work and wasn't willing to put what I ask of him into our relationship then I would be off and tbh have been very open with him about that as before we(I really) worked out how to make our relationship meet in the middle for both of us it was pretty hairy at times and quite difficult for me to see that he wanted us to work.

What works for me and my NT partner

We both do our own things

We learn from past mistakes but that goes to the key thing which is that we communicate.

He tells me when I've annoyed him because I've wandered off and left the kitchen a bomb site "you might have tidied up that mess" "oh shit I completely forgot I'll go and do it now". I tell him when he's annoyed me because he's left half a bike in my living room and I can't get around it easily. And both of us try to not do the thing again.

We have different interests and we appreciate that each of us wants to take the time to do them

We share values. Family is important. We have similar political views. Same views on sex and it's relative importance in a relationship.

We like the same sort of foods and don't try to make each other eat stuff we don't like.

If either of us say no we don't spend hours trying to persuade us out of that no (I find this massively triggering if someone does this and it would be a complete deal breaker for me)

But really it's just communication and tolerance.

I know there are things each of us would rather the other didn't do but none of them are ever a big deal. If it is a big deal we just talk about it properly - set aside time to sit down and actually talk it through not just a side comment

Well @leithreas If I was genuinely derailing @MNHQ would delete my posts. I'm responding to things that have been discussed on here. Always. Suggesting I'm not is marginalisation at best and at worst, gaslighting. This is a public forum and I'm allowed to respond. Whatever bullshit participation rules were agreed by a select few at the beginning are exactly that - bullshit. If you want to slab autism off freely you can do so on WhatsApp.

I mean you could slab it off, or slag it off. My point is I'm allowed to be here. So hello!

Blinkered gaslighting? By being positive about disability?! Interesting...

Maybe if I were NT you wouldn't write me off so quickly.

I am by no means the only person to take issue with the ableism here. Most autistic people on MN a actively avoid because it's so triggering. Did you know that? Did you know it's triggering and traumatising to read all about how our neurotype is seemingly ruining your lives?

I think @leithreas example is a really good one. And a very good case on how it is a lot if work for the NT because there is no other choice than to go against our natively reaction.

Eg all studies show that about 80% of our communication goes through facial and body expression.
If one has a partner whose facial expression doesn’t follow the ‘rules’, it will require constant reassessment.
For me, I have my first instinct reaction to say ‘wtf’ and feeling hurt followed by ‘Ah yes. For DH this means …’. He won’t notice but I still have that split second of hurt.

It's also is a lot if work for the ND because there is no other choice than to go against our natively reaction.

By which I mean for me I have to remember to behave appropriately, remember to smile remember to thank remember to mirror back actions remember to do all the social story stuff. Or I did, with my ex. With DP I don't and he doesn't mind that I don't.

I will ask him if he has a moment if hurt because I don't react appropriately in terms of body language and non verbal cues.

I agree. We have to work doubly hard just to get to base level.

Never said it’s not work for the ND too! @bestchristmasever
I have no doubt about it.

@jamoncrumpets the point is that the NT ALSO needs to work hard at it.
Not just the ASD person.