Active discussions

Meet the Other Phone. A phone that grows with your child.

Meet the Other Phone.
A phone that grows with your child.

Buy now

Please or to access all these features

Talk
Relationships

Mumsnet has not checked the qualifications of anyone posting here. If you need help urgently or expert advice, please see our domestic violence webguide and/or relationships webguide. Many Mumsnetters experiencing domestic abuse have found this thread helpful: Listen up, everybody

Original poster

Husband late diagnosis of autism-i cant cope with it

256 replies

Itsallmakingsense · 03/01/2025 11:38

Before I start- I want to preface this by saying anything i write I do not mean to be offensive to anyone in anyway and I apologise if it comes across that way.
This is just my personal experience of my own life and how it is impacting us on a family and my emotions around it. It will be long, sorry.

Background- we got together when we were both 16, we are now 40 so have been together a very long time. I was attracted to my husband because he was popular, cool, attractive, brave, and a bit bad. I was a sensible plain Jane from a sensible family, only child.
I loved being his girlfriend. Once we moved in together age 21 I noticed a few things , such as not wanting to socialise. I thought this was very strange as he'd always socialised before and had lots of friends. Life went on, he worked nights and i worked days so weren't together a lot, and at weekends I saw my family and he either stayed home or saw his. I would go out with friends , he stopped.
Once we had children, I started to notice more things. He struggled to engage with them , he is very good at rules and routines and is quite a strict parent but he isn't able to really play with them. There have been countless times where we have been dancing to songs in the living room and he is sitting staring straight ahead.
Over the years , this all culminated into me starting to dislike him very much. I felt our children were suffering and i was doing all the emotional stuff, I felt totally neglected as a wife , he never initiated intimacy, we would often sit in silence and he would never start conversations with me and the worst one is when I chat after a few mins he tells me to stop. He also became reclusive other than going to work. I would take the kids to see his family and he wouldn't come with us.
This built up and i came to the conclusion he doesn't love me or the kids, isn't interested in us.
Time passed and he had what we thought was a nervous breakdown/mental breakdown or something. He couldn't function at all- wouldn't leave his bed or eat. He went from being a smart man to looking like a homeless person, didn't wash, and this went on for a year at that severity.
Had involvement of mental health teams and a psychiatrist who even now see him every week at our home. They thought he had psychosis.
After much treatment, and therapy they made a conclusion that he wasn't following the expected recovery path , or responding to the medication as expected or engaging in the therapy as expected. Based on this and things he had told them they decided he has autism and was actually suffering from autistic burnout.
He was furious with this diagnosis, but after much talking we have both come to the conclusion that it is right.
He has admitted to me that the way he was as a teenager was all an act. Behind closed doors he was very different which all came out when we started to live together. There are also other members of his family who are the same.
Everything now makes so much sense. When he was not engaging with me and the kids it wasn't because he didn't love us but because he was over stimulated and would zone out.
He has also said that he doesn't feel love or have any feelings for anyone - he doesn't understand what that is.
The trouble is, there has been untold damage to our children and our marriage that I can't come back from. I have wanted to separate from him for years and haven't felt strong enough. Now I do feel stronger but now have huge guilt as his behaviours that I interpreted as intentional were not.
The hard part for me is I'm an extremely emotional person- the polar opposite to him. I pick up on the slightest chsnge of emotion and i now feel highly anxious in my own home as I'm always over analysing him.
Is there any way forward in this marriage? Although we now have an answer, non of his behaviours have changed and he gets worse as he gets older. I don't think I can spend the rest of my life with someone who can't show love? I also feel lied to from when we were teenagers. The man i met wasn't him at all and he was fully aware of it.
He also manipulated many situations where he deflected everything onto me and made me feel I was the cause of everything and his behaviours were normal.
Everyone that knows us knows how he is. They never expect him to attend any social events for example. He can also come across as rude and standoffish. My parents and friends don't like him. They don't know his diagnosis as he won't let me tell anyone.
Our kids are teens now and our son has problems . I feel resentment over this is won't lie.

OP posts:
Doggymummar · 03/01/2025 12:44

LadyKenya · 03/01/2025 12:41

I think that your post is very harsh on the OP's Husband. It does not matter what your Husband does, he is a different person, who happens to have the same condition, but should not be compared. The OP's Husband is not a robot, and has probably been acting in an unnatural way, for him, for years, and it has done him no favours. Good for you if you have managed to "train" your Husband. To label him an awful shitty person is uncalled for.

Show quote history

Your going to be awfully busy replying to everyone who had said the same and more.

MyNewLife2025 · 03/01/2025 12:45

@Howmanyshoeboxesdoesittake some autistic people are ALSO manipulative. Just like they can lie etc…
It’s not part of the autism but it can happen too. Usually as a self protection mechanism (from bullying, feeling out of sync with everyone else, feeling they get it wrong yet again etc…).

I don’t think it’s helpful to portray all autistic people as nice guys who can do no wrong. Some of them ARE twats and manipulative. Like any other human being.

theleafandnotthetree · 03/01/2025 12:46

Someone who feels as he does (or doesn't feel more to the point) should never have gotten married and most especially should never have had children. None of us are perfect but if we are going to bring children into this world there is a certain minimum standard of which being capable of feeling love and demonstrating care is about as fucking basic as it gets. I don't care if this makes me ableist. Having a child, forming a family, none of these are rights. I would have been gone years and years ago, I have no idea why you are still there OP

Crazybaby123 · 03/01/2025 12:48

The autism diognosis is not the issue. The fact you are incompatible and very unhappy is. You don't owe him your life and if you can't be happy with him then you should make plans to leave.

LasagneLasagne · 03/01/2025 12:50

Being autistic doesn't give him carte blanche to behave like a prick. Nor does his autism automatically mean that you should be tied to him forever.
You deserve to be happy.

LadyKenya · 03/01/2025 12:51

I don't think so. There was a tone to your particular post that was quite unpleasant, as if to say, my Husband manages, and is wonderful, while calling the OP's husband names@Doggymummar

AllotmentTime · 03/01/2025 12:52

Don't set yourself on fire to keep someone else warm.

oakleaffy · 03/01/2025 12:52

Itsallmakingsense · 03/01/2025 11:42

Just to add - his autism diagnosis doesn't bother me and would never have, it was the fact he kept it hidden at the start, lied to me all these past 20 years whilst being fully aware there was an issue- letting myself and the kids think he didn't love us .
This has been going on for nearly 5 years now and I am his carer. He doesn't work anymore and is much happier now just being in a little bubble in the home . I on the other hand , work full time , carry the whole emotional load of the family- and feel smothered by him as he never leaves the house

@Itsallmakingsense LEAVE.

You are far too young to be tied to a cold and loveless man.

Don't feel guilt.

He can be in his insular bubble where he loves no one but himself, and you can leave a happier, mentally healthier life with your children.

It's FAR less lonely being alone than in a loveless marriage.

Easipeelerie · 03/01/2025 12:54

I think you’re not suited to one another, on the basis of what you’ve said here. You fell for a different person all those years ago. Sounds like you’d be better suited to someone more like the person he was pretending to be.

JetskiSkyJumper · 03/01/2025 12:56

I don't think he intentionally hid anything from you. He probably knew something was off but didn't know what or how to explain it and you just brush it off or assume everyone is like that really.

If you're unhappy you can leave. You don't need to stay with him just because he's been diagnosed.

wizzywig · 03/01/2025 12:56

You poor woman and your kids! Please leave. Guarantee that without you he will suddenly turn back into his charming masking self to reel the next woman in. He is autistic and that's ok. But what is worse is that he is mean and that's unforgivable

Sunshineandoranges · 03/01/2025 12:56

I rarely say you need to leave but in this case I think you must but do it kindly. It is not uncommon for people on the autistic spectrum to mask how hard it is for them in a neurotypical world and then meltdown. Work out a plan together. He needs to create a world in which he can be happy but so do you. Don’t blame him..he was trying to fit in with the world,

Ottersmith · 03/01/2025 12:58

As others have said, regardless of the diagnosis it sounds like you don't like each other very much. People change from 16 to 40. You both need to move on. I don't think you can blame him for your decision to stay with him after you noticed him change, you had from age 16 to leave.

Howmanyshoeboxesdoesittake · 03/01/2025 12:59

RockOrAHardplace · 03/01/2025 12:43

I could have written this in relation to my elder brother who was diagnosed in his early 50's after the proverbial hit the fan. He won't acknowledge the diagnosis unless its to his advantage.

We always knew he was different but the older he has got the more reclusive he has become and doesn't seem to have any consideration for other people at all. He can do what he wants and my Mum blames it on the autism, its his "get out of goal free" card for everything. He is a high functioning autistic who has professional qualifications and his own business. In his business he understands what he needs to do to be professional but can't apply that same rational to his family life.

Knowing about his diagnosis, explains a lot. My brother has always absolved himself of any responsibility for everything and put himself first, he has no ability to empathise. He is lonely and miserable. I take no joy in seeing him like this and the older he gets the worse he is. He is not trying to improve his lot, he is sinking into abject misery and taking us with him.

I also have a young niece (in my husbands family) who is autistic and it profoundly affects her life. But she tries. She doesn't interpret emotions in the way I do, but she has come to understand social "norms" for lack of a better word and will hug you upon meeting and then pats you on the back to signal its over. She knows I like to play Uno etc and she will volunteer to play although I do know she hates it. It means nothing to her emotionally, other than she is trying to fit in and understand my needs. I can work with that. They can't help being autistic but they also need to help themselves and not expect everything to be done for them and this is where I struggle with my brother.

Elderly Mum is told (not asked) he is coming for Sunday lunch, he wants it at 2pm, Mum falls in line with it, nuts to the rest of us that were invited at 12. 2pm comes, no brother, Mum will not dish up until he comes. 4pm comes no brother and he isn't answering the phone. We get burnt and mushy offerings. Two days later he rings up and says he is on his way as if nothing had happened. Mum makes him another meal and says nothing.

When he started doing this (he lives very far away) we were pulling our hair out from worry, imagining him in a ditch somewhere or lying unconscious in his bed. But no, he has simply changed his mind and is not coming. We are supposed to be psychic. Along with his Autism, he also has demand avoidance so when we ring, to find out where he is, he can't cope so avoids the call. He does not do this at work, he makes an appt with a client, and if he is going to be late, he rings and lets them know. But when it comes to family, and there maybe an emotional element to the call, he cannot face it and will not make the call - this is demand avoidance.

He won't join in stuff for the greater good or because it makes them happy whereas my niece does. I genuinely believe that autism doesn't rule out other personality traits too.

I understand that it is how he is wired and that he has coping mechanisms in place to protect himself but constantly having to sacrifice my own wellbeing and that of my families for him is annihilating the family dynamics. I am forever left dealing with the fallout and get nothing from the relationship. I love him, he is my brother and I want him safe and happy but he is incapable of making any effort to meet me even part way. In my family, our needs have constantly been sacrificed for him and I shamefully say I cannot cope any longer.

What really gets me is that when I explain how I feel, all I consistently get is....he can't help it. No one denies this, but they won't accept from me that I can't help the way it makes me feel and has me on my knees because of how it affects the family dynamics.

So I say this to you, you need to sit your husband down and tell him that you understand that no-one spotted his autism when he was younger and if they had, things may have been different. But he is becoming more and more withdrawn and you no longer feel any loving emotional exchange between you, you feel more like his carer and its not the right environment for the kids.

Tell him he needs to try and get counselling and support and at least try to address some of the issues you have, otherwise you are walking away with the kids.

Do not let him or others guilt trip you.

Please believe me when I say that your brother isn’t not turning up because it is convenient for him to behave like that. He probably experiences intense anxiety around family gatherings where his behaviour obviously is judged, by you, and others. He may also find the talk, the noise of clanking cutlery and chairs scraping on the floor, the heat of the room, the texture of the food, hard to bear.

Every minute he is around that dining room table he will be experiencing extreme fear and also probably intense sensory issues.

Meeting a client will be much easier for him because it’s one on one and he understands the subject matter and there is a clear objective involved. Also there will be a clear cut beginning and end.

Instead of judging your brother harshly and putting more pressure on him, why not ask him what would help? Or stop asking him to attend in the guest place!

Honestly this thread really sums up what the experience of autism is like. The person with ASD lives an intense hidden life of inner struggle and all the non-autistic people look and seeing nothing much going on outwardly, and blithely judge their behaviour by their own non ND standards and experiences.

This thread, in essence, demonstrates why living with ASD is such a lonely, depressing and anxiety-provoking experience. Because you are on the outside of society. And judged so terribly harshly for something you yourself can’t understand or help.

Edited to say: my dd with ASD when asked out to a friend’s birthday party or family gathering would be so distressed and fearful that she would spend hours getting ready and then she would spend 30 minutes in the bathroom retching and vomiting with fear, then she would be crying with guilt at the prospect of not being able to attend, and all of her friends judging her for being a snowflake and laughing at her at school the next day. And of course we would have to let the parents know that she wasn’t coming and by that time she could have spent four or five hours in distress and she would retreat to bed exhausted.

At that time we had no ASD diagnosis and so she just blamed herself. And so her ruminating and distress would continue for another few days.

She was and is an incredibly private and person who always felt she should be able to do better and went through terrible agonies of self blame.

All the people on the outside would see would be “oh A has flaked out on us again” . They didn’t understand the depth of distress or the days of wondering “why can’t I be like everyone else and just go to the party and enjoy it?”

Imagine how much hard it is for a grown man to admit he finds a family dinner hard to attend?

Codlingmoths · 03/01/2025 12:59

Itsallmakingsense · 03/01/2025 11:55

Yes it's been 5 years since the diagnosis. He has accepted it now and seems to use it to his advantage in some respects which i don't like. It's like he now has a valid excuse to never have to go anywhere so now he doesn't, and i can't moan at him about it because he is "ill" he says to me. He still makes me out to be the bad person.
When he was at his worst, I cannot tell you the amount of stress I was under and he wouldn't let me tell anyone as he didn't want them to know. Even my own parents. For a year I had to act as if everything was normal even though we had teams of people in our house for him all the time.
Eventually I cracked and told my parents he had had a breakdown. They haven't helped in any practical way but have given me somewhere to vent. But it makes them dislike him more.
It made me ill. I put on a huge amount of weight through comfort eating, became slightly reclusive myself. I have lost half of my hair as it all fell out and has turned white. And I now have PTSD due to it all.
He laughs in my face if i say any of this , and says there was no impact on the family at all.
I don't know if he says this because he genuinely can't remember as it's all a blur he says, or if it's guilt , or he just doesn't care or isn't able to recognise the impact on us.
Unfortunately our son who is an older teen now despises his father and they don't speak. Which is very hard to live with

I think your first priority is to the children and yourself. I don’t always say you should be one of your first priorities but I do here - he is all about himself. He laughed in your face. Your children dislike him. Leave and be free.

JFDIYOLO · 03/01/2025 13:00

The poor man. Absolutely failed by parents, education, medical experts. Not seen or recognised, so he had to do his own coping, learning to mask to fit in with a world not built for him. What a waste.

And I'm so sorry, you had no idea - because he didn't.

You have a choice now, and I see three options:

Get out. You close the marriage, leave and do what you can to live the rest of your life on your terms not dictated to by another person's neurodivergence and intransigence.

Or put up. You just accept who he is in the light of this new revelation and carry on living entirely on his terms of who knows, not doing anything to change and manage it, considering you and the family second to his needs and requirements.

Or drive change. You make staying together conditional on his seeking and accepting help and changing where possible, for his and the family's good - and you educating yourself and your children, too.

muggletops · 03/01/2025 13:02

Similar situation here and I divorced last year. Its amazing how my Ex has miraculously got his life back on track and has a new girlfriend and seems 'back to normal' ie. what he was like when we met. Diagnosis or not, you need to put yourself first now. Sending best wishes on your next steps - this being the first OP - validation. 💪

LadyKenya · 03/01/2025 13:03

Well said@Howmanyshoeboxesdoesittake .

Codlingmoths · 03/01/2025 13:03

JFDIYOLO · 03/01/2025 13:00

The poor man. Absolutely failed by parents, education, medical experts. Not seen or recognised, so he had to do his own coping, learning to mask to fit in with a world not built for him. What a waste.

And I'm so sorry, you had no idea - because he didn't.

You have a choice now, and I see three options:

Get out. You close the marriage, leave and do what you can to live the rest of your life on your terms not dictated to by another person's neurodivergence and intransigence.

Or put up. You just accept who he is in the light of this new revelation and carry on living entirely on his terms of who knows, not doing anything to change and manage it, considering you and the family second to his needs and requirements.

Or drive change. You make staying together conditional on his seeking and accepting help and changing where possible, for his and the family's good - and you educating yourself and your children, too.

Option 3 sounds unachievable don’t you think? Given he’s laughed in her face and told her it hasn’t affected the family at all. Option 2 leaves her miserable and exhausted. Option 1 might save all of them - he gets to hit rockbottom, realise he needs to be able to support himself instead of the op doing it all while he kicks her, and find techniques that work for him that he hasn’t bothered to try to do.

Bigcat25 · 03/01/2025 13:05

Doggymummar · 03/01/2025 12:03

Actually, he sounds really horrible! My husband is wonderful and we work together really well, I am the opposite of him in so many ways. We are like two halves and together we are stronger.

He is kind, generous and will mask with other people, he has learned from me how to flatter and make small talk with people and is doing really well at work. He had just been told he needs to speak out more on meetings and we are working in that.

I couldn't stay with your husband, how you have described him here, I think there is more than autism going on here. We don't have sex, and I too gained weight lost hair and went white whilst he had burnout for three months last year, but he sought help, engages with it. We practice the tactics together before he goes out by himself, which he will do, he went to boots yesterday to pick up medication.

Your husband seems to be revelling in the diagnosis and using it as an excuse to be an awful shitty person, I'm sorry to say. I think your life would be better without him.

Can I ask what medicine your dh is taking to help with burnout issues? My son was diagnosed and obviously he's too young for meds and they would be of no use right now, but just trying to get prepared for the future. Thank you.

Pinkbonbon · 03/01/2025 13:06

Hes literally told you he cant feel love. Not show, FEEL.

Which has nothing to do with autism.

I wouldn't want to be with someone who is essentially, an empty shell.

5128gap · 03/01/2025 13:06

You don't want to continue to live with the man he is, regardless of whether its his fault or not, and I think its important that you acknowledge that. By saying you can't forgive his 'lies' (masking and being unaware of your condition is not lying) I think you're looking for a legitimate reason to leave him because it feels better than leaving because his condition is ruining your life. If you want to leave then do so. Your life sounds as though its been very hard, and you've served your time trying to help him and make the best of things. You deserve a relationship that meets your needs, or to be alone and free from anxiety, and should feel no guilt in going to find that.

Oreyt · 03/01/2025 13:07

I know all autistic people are different.

But in our family I'm the autistic one.

I hate socialising. Talking about feelings. Asking how people are. Noise.

But I do all of these for my kids as I'm their mum.

DH does not have empathy and will not discuss feelings. Probably because he knows I do all of these caring.

Do you think he is capable of it but doesn't because the kids have you?

Do you think he just can't be bothered like my "D"H?

Mrsbloggz · 03/01/2025 13:07

Isit2025yet · 03/01/2025 11:47

Divorce him. Life is short. You deserve a happy life. A diagnosis is neither here nor there.

I agree with this post.
I'm so sorry op, he might not be able to help who he is but that doesn't mean you have to let him damage you and the children.

JFDIYOLO · 03/01/2025 13:08

Please tell your family and close friends too. Ignore what he said. Your mental health and wellbeing matter too and you need the support and understanding of your family, whether birth or chosen.

And can you get assessments for your children? You say his relatives are similar - it can be a strong family trait. And your DC already has problems so if they can helped early surely that will mean a better life and relationships for you all.