Married to someone with Asperger's/ASD/ND: support thread 14

[Daftasabroom]

New thread.
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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.
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It's complicated and it's emotional.
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The old thread is here.

www.mumsnet.com/talk/relationships/5183563-married-to-someone-with-aspergersasdnd-support-thread-13?page=1

That really shows full knowledge of what she us doing and its effect on you. That seems abusive and knowingly so.

It feels more like a warning that she is starting to loose control. She needs an awful lot of control and when it’s taken away she acts like this. It’s very hard because she can’t always have her own way but I’m starting to get a little affected by this behaviour.

I think it’s more about having a good understanding and insight on her PDA.

@Rainbow03 im wondering. Would it help if you rephrase it like this in your head and to her?

I understand her PDA but it’s having an effect on all of us in a really negative way. I know she can’t help it and I know it stems from anxiety but I’m walking on eggshells all the time and Im starting to get really anxious myself. My own health mentally and physically is deteriorating because it’s so uncomfortable to live with. I know she can’t help it though.

I really wrestle with PDA as a hard concept or diagnosis. That us I can see it is a useful descriptor of a behavior—but even though it seems hard wired I wonder if it is useful to let the child sufferer believe that they are the only person whose need ir desire to avoid discomfort needs to be catered to?

I also wonder whether shifting from a stance of “you need to do x” or even more softly (and PDA friendly) its x time now” might better be listed out.

Here are the things that people do every day:
get up
make bed
get dressed
Brush teeth

Today is a 1 item day. Today I am highly motivated and its a three item day.

This is an approach we sometimes use with depression or fibromyalgia or other illness that makes it difficult for the person to always compete all tasks expected of them.

I honestly feel like she is emotionally very intelligent and is now using this as a threat to back off because it works. If I proceed to ask her nicely she gets more and more horrible. I don’t know what she wants because she knows about school and getting ready and the order as we do it day in day out.

Honestly I would say to her fine then we will be late for school and I will explain to the teachers that it is because you weren't happy to get dressed. Then walk away. You know that she is manipulating you. Just because there may be autism or PDA doesn't mean that a child can't also be badly behaved or manipulative. Give her the consequence, say I'm sorry you feel that way and walk away.
If she tantrums say I love you and I will be back when you feel calmer. You have got to break the cycle of her deliberately using you as a punch bag. You offer reassurance and then step back. Don't push or persue the desired behaviour but don't leave yourself in the firing line. Make sure she is clear of the natural consequence and then walk away. Lock yourself in the bathroom if you have to or put on headphones but make it clear you won't be listening to abuse from her.
When she is calm state clearly that you will be there if she needs you but you are not going to be yelled at so you will come back when she has started to regulate herself. I would tell my son this (when in a calm and receptive state), as he reached a point with meltdowns where I only made it worse, so I would walk in say I love you I will come back soon or come and find me if you need a cuddle but I would let him handle the meltdown alone. I was not helping by being present. But I made sure that he knew I was aware that he was distressed and wasn't abandoning him.
They need to learn to regulate themselves and sometimes we get so desperate to help them we just get in the way of this learning process.

@Pashazade what I find sad is that she views me as the enemy, the cause of all her problems. She always says if I just went away then everything will be fine. She doesn’t view me as someone who loves her and wants to help her, I’m the cause of her distress. She also loves school so I don’t understand why she stalls so much. It’s an awful feeling knowing your child views you as a threat.

I don’t have a PDA kid so maybe I’m talking total rubbish. Maybe think about what victimising you is achieving for her. Is it a sense of control that reduces her anxiety? Is it a release of her emotions? Is it that she knows she’s difficult and yet gets to project all that onto you so that she can maintain a self image as the ‘good’ one? Is she trying to push you away so that you’ll reassure her more because she’s become used to a high level of attention and co-regulating?

I hear that you sound completely burned out and that you probably need to make changes soon. You don’t owe someone a life completely free from distress, and maybe there are conflicts that are worth having with her. I really hope you can find space soon 💐

What you’re describing re PDA reminds me of thread a while ago where a mum was desperate for the reasons you highlighted - she was burnt out from constantly walking in eggshells.

Most people were saying her dd needed a low demand environment etc…. But the OP was quite adamant her dd needed boundaries and to be told to do things even when she didn’t really want to.
The OP came back a few months later saying that being stricter abd insisting on things worked well abd the atmosphere in the house was better. No one was walking in eggshells anymore. (Her dd was obviously still autistic, had meltdowns but much more manageable).

I think it described really well that there isn’t a one fit all approaching. If you feel that your dd is using the PDA as an excuse and a way to manipulate things her ways, then I’d tackle that.

I remember that thread. The other children in the house were suffering badly.

I know PDA is real, but I can't help wondering how people with PDA manage in the world once they've grown up.

People here like to say “All behavior is communication “ but thats not really true. All behavior is goal oriented—either bringing about a desired state of affairs or bringing about a desired internal state or mood.

One way of understanding your dd’s behavior is to look at what she achieves by refusing (to brush hair or go to school) snd what internal state she preferentially rests in when she escalates and abuses you.

As mothers we are in a difficult situation neurologically when our child is distressed. We are hard wired ourselves to become dysregulated and distressed when our child cries or displays stress. We relieve our stress when we soothe or rescue our child.

Something else we say is “things that fire together wire together, and things that wire together fire together.” That is the brain is plastic and the more certain behaviors occur in sequence ghe more they will become linked. The more your dd associates “being aggressive and rude to mum” with a pleasurable outcome “won the day/made mum cry/didn't discuss school” the more she will repeat the behavior.

Being unable to soothe or calm your daughter is massively stressful for your neurological system. Continually living at a high peak of anger and insult to you, her main caregiver, is also bad for your dd. You need to find a way to break whatever her feedback loop is that keeps her oscillating between anger and insult as ways of managing her world.

No one can say, a priori, what is the right thing to do but I think you have to put aside self critical judgement like dd hates me—that won’t get you anywhere. Start by being very compassionate to yourself! It is counterintuitive to say focus on yourself but you are very important here and but you need to be able to come at this situation with a calm, holistic, experimental, approach. And you can only do that by supporting yourself. She may not be able to know how hard you try for her—but we can see it. Be proud of yourself for trying.

Experiment—as others suggested upthread just state your position anf move away from the conflict. She is seeking to dominate and derail you by redirecting focus from what she needs to do to the idea that you are at fault for asking wrong, or for some other made up reason. The sun rises and sets whether we ask nicely or not. She must be able to perform her tasks whether the world spins left or right. When she starts picking a fight with you or shouting that you are a bad mother just shrug and repeat, non judgmentally, “I have given you one reminder.” Then leave.

Excellent advice @pikkumyy77

Haven't always been able to keep to it but getting better. Although it's bloody tough with the Teenage Mutant Ninja Monster atm. But he can't, he can't rule the house.

Hi all. Just found this thread having recently had a revelation that DH is almost certainly autistic, following a counsellor pointing it out. This explains a lot as I find him very hard work sometimes - inflexible, needing to focus on one thing at a time and refusing to talk to me about other things whilst focusing, often incapable of understanding how I feel or what I need, often being critical of me for talking too much, generally showing a lack of interest in a lot of the things I talk about eg friends or work colleagues. There are many other examples that no doubt better prove the situation but currently exhausted after a long night with my baby so not my most coherent.

I wondered if anyone has any advice on ways of better engaging with a neurodivergent DH. I am finding it very challenging trying to parent and run a household with him because he will often respond 'I don't know' when I ask him things, as above won't talk to me if focused on something else and is pretty much always doing something else so I struggle to talk to him about urgent decisions we need to make. He struggles horrifically with admin and executing any kind of admin job in a timely manner eg it takes him an hour to send an email as he fiddles and fiddles with it. So the reality is I end up doing all of our household and child admin whilst working full time in a very busy high pressure high profile job (ie managing lots of people who are always watching me which makes managing personal stuff at work hard).

We otherwise have a decent relationship bit I'm really getting exhausted and struggling to work out how to deal with his executive dysfunction and inability to engage with decisions. Any tips from those deeper in the trenches?

@HelpmyDHisautistic It's tough. I didn't realise my DH wouldn't be able to do everything I do until I had DD1. By which time I was obviously looking after a newborn on top of everything else.

You might not want or be able to do this but I switched to a part-time contract and paid for extra childcare to give myself more time to do the child & household stuff.

Re communication, texts work best for my DH but I often have to include a deadline! He can then read and process what I'm asking in his own time.

Thanks @lovefoolme texts are a good idea, will try to do that more, though he is very good at ignoring those 😂Re going part time, I'm up for a promotion at work soon, if I get it I'm hoping to drop a few hours to make life a bit more manageable whilst not losing salary. How do you manage the emotional side of it, feeling like it's all on you? That is what annoys me the most, I feel like he just doesn't see it because despite being intelligent he is just incapable of recognising and holding in his mind all the things I do.

Totally agree with this. Own life jacket first etc @Rainbow03

As for what is motivating demand avoidance and controlling behaviours, and how to reduce them, this is such a complex area.

I have cracked this one with my own ASD child. It has required a very nuanced interplay between implementing a lot of structure and predictability but making it feel to my son like he is in control. Choice mechanisms and logical, natural rewards and consequences at every stage. Never, ever 'because I said so.'

At age 4:

6.30 is bathtime. If we can get into the bath and out by 6.40 there is time for an extra story. Would you like an extra story? What extra story would you like me to read? Lets choose that now, and then we can bring the little clock into the bath to check we are still on time. (At 4, he didn't know to argue for a later bedtime, as this was on the visual timetable which was, in his mind, predictable and immutable.)

Now, at age 11:

Bedtime is 8.30 to get up for school on time. It can be 9 if you want but I guess you might need to sleep an extra 30 minutes, and then we might miss the school bus and you could get a late mark. Remember if there are three late marks in a month at school you have a detention. What would you like to do? Whatever you choose is fine with me. (At 11 he does know - and love - to argue for later bedtime, so school rules are our best friend).

But this is only one case of one child - mine - and I would only ever direct another parent tackling PDA to 1) get some respite then 2) get some help.
Once the behaviours are entrenched, this is evidence that can be supplied to the GP, hopefully for a CAHMS referral.

One child of a close friend went from PDA to ODD, then CAHMS. What came back was that he needed way more structure, rules and micromanaging of rewards and consequences. He's been put into air force cadets and loves it.
@SpecialMangeTout 's reference would support this.

But another family I know found that going low/no-demand was the only way to get their daughter to eat a meal or leave the bedroom. They have decided to home school and luckily have the financial means to do so.

I found this book extremely eye-opening and helpful, written by the mother of a girl who had a very strong PDA profile:

www.pdasociety.org.uk/resources/pathological-demand-avoidance-syndrome-my-daughter-is-not-naughty/

Hi everyone - first time posting on this thread. You may have seen my thread the other day about feeling like I have no relationship with DH anymore. We have a 13 month old DC and this is the closest I have come to considering divorce, and all that entails.

I am so torn because in some ways it would be so much easier to continue with the status quo. He isn’t directly unpleasant to me really, just often thoughtless, selfish and emotionally immature which means I find myself having to ‘manage’ him a lot. I know he’d be absolutely devastated if I were to pull the rug from under us and even in my angriest moments I feel a real sense of pity for him because he is very childlike. The hurt I see on his face when I criticise a decision he’s made that he thinks was something I’d like, for example.

I read up on Cassandra syndrome after a pp mentioned it on my thread and it really resonated. I would say my family and close friends know exactly what he’s like (and my family have come to really dislike him over the years, unfortunately, so there’s that aspect too which is difficult) but if you were to meet him or work with him (high powered, high earning role) you’d think he was quite an earnest, quietly spoken and sweet man I think. You’d think he was slightly odd in the way he conducts conversations because he talks at length about his own interests, rarely asks questions (although I’ve ’taught’ him he needs to do so and he does more now) but I think overall you’d think he was a really nice, solid partner and father.

It’s this aspect that also worries me regarding a separation because whilst I do not think he’s a danger to DC at all, he loves them dearly and is very protective, he is so chaotic and disorganised and not used to being responsible for DC at all, I can’t imagine him being capable of say 50% care or even regular whole days/overnight stays until DC is a lot older. I don’t know how I’d get across this to a solicitor without sounding like I think he’s neglectful and dangerous, which he isn’t, he’s just too childlike and in his own world.

I could go on for days about the various issues DH has. I have moments where I feel I can’t stand it another day and then i’ll wake up and think, actually, I can cope with this until DC is a bit older. However, I don’t want DC to be too old and negatively affected by divorce. It sounds like the sweet spot is around age 2, so I suppose this year is crunch time.

Grateful i’ve found this thread and interested to hear from those who have decided to separate with young children, and how it went, or those who have decided to stay for practical reasons.

I could have written the same post, sounds very similar to my relationship although I feel now we are at the point where the relationship is wearing thin and we don’t really ‘get on’ much anymore either. No advice, just solidarity and interested to see responses.

The way you describe how he is at home, always ‘doing’ something he can’t be disturbed from, so unable to discuss anything and end up managing everything yourself is the exact same as us and it’s hard to explain to someone not in that situation. I equally have a very high pressure job and I feel having essentially teenage DH to manage too is very difficult.

Hi @Goldstar88 I didn't see your other thread but you sound a lot like me 8 or 9 years ago, although my H has also been quite unpleasant and passive aggressive. I realised when DD was only tiny that the man I married was not who I thought he was and that I'd do a lot of the parenting myself.

I'm still kind of here but to cut a long story short I did ask for a separation last year after contemplating it for years. I agreed to give him a second chance in the end but it's not really working out. Should I have left many years ago? Maybe, probably even. But our particular circumstances were such that it was almost impossible and it was only when DD was 10 it seemed almost, almost doable.

Many other have left and might give better advice on how to do so and co-parent etc. There was a discussion on a previous thread about how some of us had stayed because we feared our DH's wouldn't be able to cope with the co-parenting, due to reasons you've described yourself. Again, depends so much on circumstances. A friend of mine left her ASD ex when their son was only 2 and they have managed 50/50 quite well, but their circumstances are very different to mine which made it possible. Grandparents to help, an excellent nursery and a good and well paid career that meant they could afford to set up a new home etc. None of which I have.

Hopefully someone who did separate when kids were young will come along, I just wanted to share some of my story.

@Goldstar88 sounds very similar to me.

Just wanted to say that, despite dh struggling with looking after the dcs, making choices that were …. questionable etc…. I was able to leave them with dh every other weekend when they were 2 and 4yo. (I was working then and used the fact it was quite a way away to not come back home on the Saturday evening)

Did dh struggled? Hell yes. And he also learnt to appreciate how hard it is to look after 2 preschoolers.
Did he make mistakes? Probably. I’m sure they went on many ‘walks’ where they ended up tired and cold. (And dh had to deal with crying children)

But they managed. And DCs have developed a love for the outdoors in the process.

All that to say, your dh might find it hard to look after his child on his own. But he might also learn and be ‘good enough’ iyswim. The facy he is willing to learn from you (like asking questions) and is devastated if he doesn’t hit the spot trying to do something nice is a very good starting point.

Obviously the danger is to think you might be able to help him/teach/support him enough so that your marriage together will then be great. I have much more doubts about that,

If anyone has read PDA in the Family by Steph Curtis (also Steph'sTwoGirls blog) there is a chapter from her DH's view which is quite interesting. It's called 'A Dud's Perspective', because that is what their DD calls her dad (tongue in check!) And he makes it quite clear that he really is a bit of a 'dud', or 'spare' at times and that he hasn't read the all the books, read everything about PDA and ASD and nor has he been on all the courses Steph has attended. He says he knows his place in the family hierarchy, not meant in a bitter way, just matter of fact. Or accepting perhaps. It might make you think him absent but he is moat definitely not.

From his writing you can tell that he clearly loves his DD, he does his best as he thinks fit and when Steph is away for a night or more they do things his way. The sandwiches might be cut differently, Sasha will still eat them and clearly 'survives' fine with her Dad and Steph is very open about how Sasha (DD) needs her 'more' on her return but they seem to have found a way to 'work'. It does sound like the dad thinks he is ASD/PDA too. I didn't get the impression Steph is ND but maybe she doesn't want to elaborate on that in the book.

Anyway, an interesting read!

Hi @Goldstar88 & @HelpmyDHisautistic Most of what you are saying i can resonate with.
I have no advice, other than leave while you can, don't wait for the 'right' moment. It will never come.
It actually took me a really long time to realise that dh was basically my 3rd child.
As I started letting go of the reigns with my two teens, I realised dh was still clinging on to me being the decision maker for absolutely everything.
I definitely suffer from Cassandra Syndrome and have for years.
Dh and I have been together nearly 30 years, I am now 60, so very limited in where to go from here.
Don't wait in vain for 'things to get better'

@SpecialMangeTout2 I chuckled at your message about DC maybe getting cold on walks - my DH regularly tries to take our LOs on long walks without sufficient snacks and can't understand why it goes wrong, lol as I didn't even clock that this was related to him being ND. @goldstar88 yes your posts also sound very familiar to me. I do often feel I've had enough and have thought about divorce, but like you I just can't imagine him coping with the kids, just being so disorganised. I guess though ultimately I would trust him to keep them safe, just perhaps not parent optimally - but the kids adore him and have such fun with him so maybe there would be a balance to be struck. I do worry @Ohdostopwafflinggeremy that I will end up feeling like you and wishing I'd left long ago as I can see his ND tendencies getting stronger rather than weaker all the time. But as I say we do have a lot of great aspects to the relationship too. Cassandra syndrome rang some bells though 😥

@HelpmyDHisautistic How do you manage the emotional side of it, feeling like it's all on you? That is what annoys me the most, I feel like he just doesn't see it because despite being intelligent he is just incapable of recognising and holding in his mind all the things I do.

I focus on the things within my control (my job, how often I see my friends) and try to accept the things I can't change (DH's thinking and behaviour). It helps that I have friends nearby and luckily I do a job I love. Also, DH occasionally thanks me for all I do. It would be soul destroying if he never noticed at all.