To worry our marriage may not survive the stress of autism

[Takiwatanga]

... I feel bad, I truly do. But I cannot see how we will last the next few years with the stress autism brings to our family and our son is still so young....

Yokatsu, is there any way through the situation you’ve described?

to you OP and everyone on here. We're not the only ones x

Yes lots but I think it depends on the outcome you want and how bad it has got.

The easiest option is to split. Pressure on mum instantly drops, mum thrives or at least feel a lot less pressure than there was.

The other way is much harder because it piles the pressure on mum at a time when she really doesn't need it. It involves unpacking all dad's copying strategies both the positive ones pre children and the negative ones that have crept in post children. Dad probably won't be able to help because he won't recognise what he does or why. Then putting them back in place regardless of what you or the kids need need.

Eg he needs twenty minutes peace and quiet to transition between work and home when he gets home. Pre kids or small baby you won't notice, you'll have just got into a routine of sitting quietly for half hour. In good times he may be able to tolarate sitting quietly and watching a mutually unwinding DVD with the kids. As part of the a family unit, the kids are desperate to see dad and tell him everything the second he jumps through the door as are you, you may be desperate for a break after looking after an autistic kid all day. The social expectation is too much. You start getting avoidance tactics..... unpleasantness to everyone who comes anywhere near, going playing computer games. To fix it you need everyone including the kids to put there own needs second. Amusingly you might get a snippet of self awareness as dad's general mental state improves "why does everyone scatter the second I walk through the door." Then you start reintroductiNg low social expectation activities where the mutual gaze is at something else other than each other (tv)

So the question is can you and should you forgive the avoidance strategies, especially if these have got pretty unpleasant and possibly abusive . Can you methodically spot and fix all the same things in another adult that you can in your child, with the right degree of respect due to the fact this is an adult.

The few that survive mum takes on a hell of a lot and has a very full awareness of what she is doing. I know few that do but they do as much if not more asd-wise for their partner as they do there kids... I don't live with anyone full time, it would be too much for me

Our ds2 has asd and was diagnosed on his second birthday.

It's been a hard slog and there have been times when I am so full of resentment for DH that I want to leave. I remember a time a few years ago when DD had just started school,both children were sobbing saying they didn't want to go. I asked DH to help me get them to school but he wouldn't because he wanted to be first in line at the barber's. Even typing it now makes me.angry.

Then we had the battle for a special school place. I say we but it was mainly me and that piajes me to breaking point. Then DH decided that he wasn't happy and left for 6 months.

We managed to.work things out and things have got better with DS in a special school, but my trust in TH is broken and it's a hard prove to pay.

DS1 is 12 and was diagnosed 4 years ago with Autism. DH and I married when DS1 was little, though he's not his Dad (DS1 has time with his Dad, too, and we get on well, his ASD wasn't why we split - he left when DS1 was 5 months old).

DH and I parent differently. We've had to learn to compromise and work out what does and doesn't work. We've spent nights arguing and figuring ourselves and our strategies out. The main point we try to remember that the other is always trying their best even if they fuck up occasionally. He's had to work far harder to adjust his natural instincts when it comes to parenting DS1, he's had to learn all sorts of new skills that seem to come far more easily to me.

A lovely woman I know (who I met through an Autism conference a few years back) met me on my own a few times then met DH and I together at a social event and said that she liked that DH and I are always one another's biggest fans. And it's totally true; he may not always do what I'd do in any given situation and I might shake my head and think "fuckinell" when I hear him speaking to the DC at bedtime and there's nothing calming or soothing going on instead he's singing Moana songs and dancing like a wally but, ultimately, he is amazing.

I think parenting a child with ASD makes it incredibly hard to still like the other person because they aren't always doing what you'd do and how you'd do it. For me letting go of that 'control' element of my parenting is hard, and making time for a marriage isn't easy when your child needs so much of you each day. But it gets easier as time goes by and, if you're lucky enough, you can weather the storm.

Another great post Yokatsu

It’s brought us closer together. My son is 19, severely autistic, severely learning disabled - we have had the most incredibly stressful few years. Beyond anything I could have imagined (& he’s always been a challenge, but the last few years have been something else) but it has definitely made out marriage stronger - in part because we’re the only 2 people who know what it’s like.

We were talking about it the other day - think it’s given a shared focus, a grounding, an understanding of what is important in life and a need to work together (ds1’s requires 24 hour 2:1 - has very complex needs).

So doesn’t have to be an issue for a marriage.

A shared black sense of humour can help. Dh and I have been on the floor unable to breathe with laughter at some (outwardly) terrible situations.

I think if you think too hard about how it can drive you apart it can become self fulfilling? The hardest thing for our marriage has been the finanacial impact of autism as it has left us seriously short of cash at times, but I guess a lot of families have that without autism.

Devlish does your husband have ASD tendencies too? Mine does, and exactly as described, it wasn’t too much of a problem until he needed to step up with the kids. Instead I do EVERY play date, School admin, health apts, clubs, pta, the lot. He cannot or will not socialise unless it’s 100% on his terms. I carry the mental load and I’ve all but disappeared under the weight. I can’t leave, because I need help with the kids, and I think he would (inadvertently) damage them by running me down as he would see it in such black and White terms as “she ruined my life” etc rather than a non functional relationship. We are functional but only because I make it so. There is no slack for me.

Gandalfbold I hear you re trust. I don’t trust my husband to “get it” somehow. He is by nature a truthful soul but sees only one perspective, usually the one that was presented first, and shifting him from that is very difficult. I don’t trust him to make the right choices for the kids. He adores them and would never ever hurt them but doesn’t anticipate outcomes or understand behaviour in the way an NT adult might.

No he doesn’t have ASD but I’ve always done all that while he has worked and worked and worked. It was how we had to divide it.

For the first 15/16 years I did every meeting pretty much and he would turn up to the annual review. Then things started to get tricky and so he would come to ‘important’ meetings. We were having maybe two MDT’s a month plus regular other meetings and he just couldn’t do most of them. We had one last week with 17 people around a table (a 6 monthly one) so he came to that and he came to a safeguarding one a couple of weeks ago , but otherwise I tend to do them alone. He’s never done any of the mental load stuff - he regularly works about 12-14 hour days, so I have to do that. I work as well, but in totally flexible employment (so I can do the meetings etc).

We never really had play dates -well only with other severe autism families.

We split time a lot. So the years before ds1 needed full 2:1, at weekends I would take him out and dh would look after the other two. When ds1 was younger (so his siblings were toddlers) it tended to be the other way round.

I think we’ve always had very clear roles - so both working hard - just in different ways. For a while when eveything was collapsing he had to leave work mid afternoon to get home so ds1 has 2:1. That was really tough and he could only do that as he was quite senior - it would have been much harder had that happened earlier in his career. I don’t know what we would have done.

In school holidays we had direct payments so I could buy in an extra pair of hands (had some wonderful ones) so I could get the three kids out while dh worked.

I suppose although he doesn’t do the mental load stuff he has always been there if I have said I needed him to be there. So I know if I say I can’t do something alone he will be there. It doesn’t happen that often but I guess

Whoops - it would be harder for me if I knew he would make a fuss if asked.

That’s the thing, the “make a fuss” in an ASD man can be all the way up to a big old meltdown, plus very little insight into how superbly unreasonable he’s being, because he doesn’t do “theory of mind.”

So the pressure is more from your husband’s ASD/BAP than ASD in kids?

There was a book published a no of years ago by Jessica Kingsley- an Asperger marriage? Something like that- I haven’t read it but have heard good reviews from those that have. FWIW we had a neighbour who clearly has undx’d asperger’s & he can be very difficult to manage/cope with as a neighbour. I would find marriage to someone that rigid very hard. It’s a different thing than dealing with ASD in your child. (Ds1 will never have a relationship/get married - it’s a different type of stress from his ASD).

I think parenting a child with ASD makes it incredibly hard to still like the other person because they aren't always doing what you'd do and how you'd do it. For me letting go of that 'control' element of my parenting is hard, and making time for a marriage isn't easy when your child needs so much of you each day. But it gets easier as time goes by and, if you're lucky enough, you can weather the storm.

Oh my, that is so true. I am currently having counselling and we are no looking at Me. Following my last session I have been tasked to not only do things for me guilt free but also connect with others. I am hoping if I feel better, I will feel better about others,