Married to someone with Asperger's/ASD/ND: support thread 12

[Daftasabroom]

New thread.

This thread is for those of us seeking to explore the dynamics of long term relationships with our ND partners. Some of us are ND ourselves, very many of us have ND children. It is a support thread, and a safe space, it does get emotional at times. Avoid sweeping generalisations if possible, try and keep it specific to you and your partner.

It's complicated and it's emotional.

The old thread is here.

How old is your DS? Does he manage OK in mainstream school? (Apologies if you’ve already explained those details in earlier posts!). Do you know of any support groups for parents of children with ASD?
Just trying to think of ways you can get more support for yourself.
As for being support animal for DH as well, can you leave him to it a bit more so you can carve out a bit of headspace for yourself?

Sending massive hugs to you and anyone else who is struggling tonight 🫂

He’s 10 and in mainstream. He’s so great. I’m just struggling I think atm. 😔

@MySocksAreDotty is he doing OK in mainstream? By that I mean able to access the learning and has some friends? Able to navigate social situations well enough? If so then great! It will be important to ensure his new secondary school understands his needs and has a plan in place to support him. This doesn’t have to be an EHCP necessarily. If his needs can be met through the schools resources (ie he can be allocated a key worker, may require a pupil passport - this kind of thing then an EHCP isn’t necessary). If his needs are greater than that (ie is struggling academically, has very few friends, is defiant/avoidant) then now is a great time to think ahead for what he will need for secondary. You have time, which is good news. And your school should be able to lead on all of this so it doesn’t need to fall to you.

A lot of children mask at school and have their release when they get home. That’s really tough on the parent/s. If this is happening then school may not be aware that he does actually need more support.

Do you yourself have any support for outside of school? Any support groups or networks? Any like minded people who have children in similar situations? Sounds like your DH isn’t able to prop you up when you need it. I’m not sure how easy it would be to let him fend for himself more? My DP has so much life admin and I was trying to help with it all but he was rigid in his meticulous and over complicated unnecessary methods and didn’t help himself and I found it too frustrating to watch him making such a mess of everything so I just stepped back. It’s easier now I’m not trying to support him.

You sound like you need some time for yourself. Is there any way you could set aside some time to meet with a friend, do a class, read a book, whatever?

PS ignore my post if that’s not helping. Sometimes we are just looking for a place to vent and not asking for any advice. Apologies if I’ve overstepped (supporting children with additional
needs is my career so I can get a bit carried away!). Xx

Thanks it’s so brilliant to receive kindness on this thread ❤️. DS does really well in school, has had a friend breakup and been so resilient and found new, great friends. His main problem seems to be anxiety, he’s been seeing an occupational therapist to try to understand different sensory processing.

I’m trying to pinpoint what I’m struggling with because nothing is really that bad. Perhaps I’ve been on the receiving end of behaviour I haven’t understood w DH for so long, and now DS can just randomly flare up. I’m feeling like an angry child myself I think. On the one hand I want to do well for DS, on the other hand I’m having a big ‘why should I’ internal tantrum about the effort of trying to understand these (to me) inexplicable people.

Maybe I expected DS to ‘see’ me where DH does not. I understand that’s really wrong and too much pressure to put on him entirely. I think I’m a bit despairing maybe nobody in my family will ‘see’ me. Perhaps if my self esteem was better this wouldn’t be an issue. I realise this is unhelpful baggage to drag into my relationship w DS, I’m going to try to do better.

@LoveFoolMe

I could have written this . It's exactly how we manage . I don't find it hard to live with him . Only when impromptu things happen like we bump into people I know . He is super bright and caring . But he's also infuriating.

I told him on Sunday how I felt and he was naturally upset , saying he thought he was being funny and sociable . Then I felt really bad .

Don’t be too hard on yourself (I know that’s a massive cliche!). You don’t get what you need emotionally from DH and naturally you seek it out elsewhere. Probably your 10yo DS isn’t going to be able to provide that, as you point out, but who am I to talk as I find myself leaning on my DD a bit and she’s only 11, though emotionally very astute and it’s hard for me to remember she’s 11. I seem to be repeating history in the same way my DM entrusted me with her emotional pain. Perhaps not quite to the same degree…..I digress. In short, we are emotionally devoid of support and it is difficult and painful, so don’t beat yourself up! It’s a human need to feel emotionally supported and you’re going without. And that’s hard. Do you have anyone supporting you at all?

I’m so glad your DS is doing well at school. Anxiety is a tricky one. It can really flare up with the move to Big School, although if the transition is managed well it can be a blessing! My DSS hated his primary school, was in trouble all the time, avoided any work and academically fell very far behind. He’s not very academic to start with but the gaps in learning made it even worse. The secondary school was brilliant!! He is very happy there and has caught up on a lot of his learning and is doing fine now. So it can be really positive! As long as DS feels safe there. Has a good support network in place (staff and friends). Is able to identify what makes him anxious so that those worries can be managed. Often school is a place of real trauma for children with ASD so it’s very positive that this isn’t the case for your DS. Take some heart from that if you can.

You sound just tired of it all. And maybe that makes you feel put upon and angry. I felt angry in my marriage. Not for the same reasons as you. But I carried around with me all the time and it made me very miserable. I felt like everything fell to me. I did make time for myself, and that did help a lot, but still I felt angry. So I completely understand how carrying a heavy load can make you feel that way. It’s a lot on your plate!

I suppose what I am trying to say is I see you, I get it, it’s a lot. Your feelings are completely rational. I know you said you would “do better” but it sounds like you’re actually doing a wonderful job!! DS is so lucky to have you in his corner. Things actually sound OK. I don’t mean to minimise your struggles, I mean you’re probably being harder on yourself than is due because you seem to supporting everyone really well. Perhaps it’s just you that’s neglected, fed up, exhausted from it all, which is completely understandable. At least give yourself some credit and praise! You’re an amazing mum by the sound of it. Xxx

@upto10andbackagain well if other people are rolling their eyes at him without him noticing then you’ve probably done him a favour. But of course that will be hard for anyone to hear. My DP is the same. Thinks he’s being life and soul and Mr. Interesting and Engaging. But people who’ve known him a bit longer are giving their partners sideways glances and looking at bit cringey 😬 at him. Smiling and nodding incredulously. He can’t see any of that of course. He’s so arrogant that if I told him this he would just get angry with me and not believe me, so there would be no point. But I think you’ve been faced with a dilemma: stop socialising with him as you find it unbearable (and it sounds like he enjoys socialising with you so he would be missing out), or tell him his behaviour isn’t being received in the way he thinks (which is hard to hear but ultimately if he’s able to address it then will mean people, including you, don’t wind up avoiding socialising with him).

You had to make a call and you made the one you thought was right. You didn’t do it to be unkind.

@BustyLaRoux Ive been meaning to post for a while but the thread has moved pretty quickly, you my utmost sympathies and I do understand your situation and dilemma even if I don't have any suggestions beyond those already posted.

Thanks @Daftasabroom You’re very kind to think of me. I actually feel like I’ve had an epiphany. Xx

I’m really struggling. We’re on holiday and DH had 3 pints in 3 hours yesterday and was going to drive us and our 3 kids back to our accomodation. He was in the driver seat with engines on. I said I needed to drive as he was over the limit. This has resulted in him not speaking to me at all since - he’s very clearly pissed off with me. Can anyone explain why?

So talk me down - introvert ND bf just very sweetly asked for this weekend apart as he feels burnt out and needs alone time.

Tell me this is normal for introverts?

@HowIrresponsible I'm not sure about introvert or not but doesn't everyone need a bit of downtime? You're BF sounds really self aware and honest. Why not take the opportunity to take some time for yourself as well?

If anything like mine then he felt you were criticising him. The worst is when he knows he’s in the wrong and I dare to mention it. It’s the crime of the century and I am not allowed to criticise him lest all Hell breaks loose and a drunken rage will very probably ensue.

I’m sorry you’re going through this. Xx

DottySocks I can really relate. One of my worries is if in time my DC get to a typical level of teenage detachment emotionally (which I consider to be my real job, a parenting goal) then I am not going to be around anyone that I can often be truly myself and relaxed with at home.

There’s also profound impacts of ND on my mothering role and relationship, as preteen DC gets older, because my role has to change from being mother (emotional relationship) to being carer (very informed and strategic, almost professional relationship, holding my own feelings back constantly, to help us to manage DC’s autism with PDA traits).

I am in therapy and consider myself to be grieving the loss of a relationship with my child as I had imagined it. The thing is when practically you are very tied to the daily/nightly needs of a high needs child especially if they don’t have friends and cant attend school, finding time and space or money to be building up your own emotional support system to hold you as the adult is very very hard to do.

I don’t have a solution yet. I think it’s probably only going to be other parents of kids with ND that are going to get us through this so that’s the friend group that I’m looking to build up. It’s a complicated and messy time. Cut yourself slack to have feelings about that.

Ack @ThischarmingHam you’ve absolutely nailed what I was struggling to articulate. At the moment I’m just realising I need to change from ‘emotional’ to ‘informed-strategic-professional’ as you say and I am so daunted at the prospect of shoving down my own natural reactions to things (even more) and learning a whole new set of things (again). I feel bad since DS needs are not that high at the moment but according to everyone things have the potential to explode on contact with secondary.

I see you too in those feelings that you have. Of course you want to be ‘seen’ by those close family around you. I’m glad you’re having therapy, I’ve got a few sessions from work atm too. It’s so important as you say to feel time being relaxed as your natural self. That’s a great strategy to find other ND parents. Even in primary in my school friendship group I’ve ended up gravitating to those parents whose kids are now getting diagnosed with ND since our home lives were more alike. I hope you find great friends and some support. Thank you so much for giving me the words I needed to think about my feelings atm.

@ThischarmingHam you articulated that very well, I feel very similar.

I posted some stuff on the other thread about him. I won't go into it again but it just make me a bit wary.

No issue with a weekend without him in fact I'm already making plans with a friend

Yes I thought the same! Amazingly insightful x

There was s a very beautiful book on this subject by a professor of literature “The Anti Romantic Child”

Priscilla Gilman, a teacher of romantic poetry who embraced Wordsworth’s vision of childhood’s spontaneous wonder, eagerly anticipated the birth of her first child, certain that he would come “trailing clouds of glory.” But as Benjamin grew, his remarkable precocity was associated with a developmental disorder that would dramatically alter the course of Priscilla’s dreams.
In The Anti-Romantic Child, a memoir full of lyricism and light, Gilman explores our hopes and expectations for our children, our families, and ourselves — and the ways in which experience may lead us to re-imagine them. Using literature as a touchstone, Gilman reveals her journey through crisis to joy...

It is really very good on this issue of grieving the emotional relationship and intimacy of what was anticipated.

@pikkumyy77 do you think it would apply to a romantic partner too?

Well, her use of Romantic is in the Wordsworthian sense. But I think the way she writes about the imagined child, the imagined bond of curiosity and empathy, is very interesting. I read the book to better understand my cousin’s situation with her autistic son, but it made me think a lot about how we love the ideal of the child, or the lover, before the real live one even appears. That is a profound insight into our actual relationship, if we can accept it.

On the one hand dreaming of and aspiring to a good relationship helps us choose wisely and reject poor fits. On the other hand mistaking our fantasy ideal for the person who is actually in front of us is like forcing our spouse into a superman suit and then expecting him to fly.

I’ve just asked DH to pause the TV so I can talk to him about something about our daughter (important). I said what I wanted to say. He said absolutely nothing and then turned the TV back on.

This is how he is and i find it so dehumanising.

I told him that I hate speaking into the air and find him so dismissive. Cue tantrum about how I wasn’t having a conversation I was making a series of statements and as there was no question in there, he wasn’t required to say anything!

He has such a HUGE hang up about people not asking him about him and not being good conversationalists ... I honestly can’t wrap my head around how ha can possibly expect from others what he absolutely 100% doesn’t even attempt to give to others.

It’s so fucking draining and disappointing. I’m wasting my life - but to keep the family unit for the kids. I’m an absolute shadow of myself. Who dedicates 25 years to talking into the air with absolutely no interaction with their spouse? I’m a fucking idiot.

Would it be really awful of me to mirror how he is with me so he can appreciate how it is for me to interact with him? I know he will hate me not being interested in what he has to say / not responding to him at all and if I do only 1-2 word answers. But this is how he is with me and it makes me want to give up and just cry with despair at how much needs to change for me to feel safe and valued in this relationship. I’m at a total loss as to how to handle this.

What reaction are you hoping for? He won't appreciate it and change.