Husband late diagnosis of autism-i cant cope with it

[Itsallmakingsense]

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.

Great to see 2025 start with the usual ableism here on mumsnet with regards to autism.

Cheers everyone!

It’s far too common a theme on the NT/ND MN threads for it to be an isolated incident. It’s very autistic behaviour to love bomb at the start. We become their new special interest and they are obsessed with us. This feels like love to us, but for them it’s a passing phase. READ those threads before commenting again. You will see it time and time again. I am certainly not alone in feeling a steady devastating shift that occurs 6 months to 1 year in. It is so common.

Because you have a diagnosis it means your needs trump everyone else’s? Even if they’re suicidal.. yes I know, I’ve been there. It’s not a competition to race to the bottom you know? We ALL have needs and acknowledging the complexity and difficulty of autism would be a great start from the community but it’s ALWAYS on everyone else to bend to your will/needs.

Its my experience of my brothers diagnosis and how it has affected me, if you want to call it ableism, I will disagree. I have done everything I can to educate myself and love/protect my brother. Who does the same for me? Is struggling with his autism and how it affects my family life, if not whole existence, defined as "ablelism"....I think not. Sadly its not just the Autistic person that has to deal with the diagnosis.

However I have several autistic people in my family and they are all distinctly different and there is no "one solution fits all" prescription. It can present vastly differently. My own DH is borderline autistic and he is as loving as you would want any man to be but god help you if you try to interrupt when he is concentrating on his favourite subject. Some of his traits are very endearing.

@RockOrAHardplace

If it's any consolation, or any help at all, there will be many of us who agree with your very measured outlines of dealing with someone on the spectrum

Solidarity, for what it's worth.
Is there any way you can drop the rope and step back at all?

Way to completely miss a nuanced problem. I am autistic and this thread is not ableist, it is a real issue that our needs affect the people who we live with and no one is obligated to take care of all of our needs permanently while we give absolutely nothing in return. It's not realistic.

Thank you for understanding, I love my brother and family, I have seen his struggles and I know its not easy for him. Autism is a very wide spectrum and so experiences will differ widely.

But as a carer for three people, I get no help, I do not care long enough for one person, its split between three people so I get no financial assistance. As I age I really can't see how I will manage as the people I care for, including my brother are older than me.

My mum and him expects me to take over my brothers wellbeing when she passes as he has no one else, he has burnt too many bridges. Its a lot to ask as I have a demanding life of my own and I am not in tip top health and cannot drive as a result of it so it didn't help when big brother moved a long way away, yet still expects support.

And this is what I am trying to tell people, I cannot influence him to live in a way that helps me to help him, between him and my other caring responsibilities and work, I had no life. Am I the sacrificial lamb here? Other sibling stays well out of it and does nothing and nothing is asked of them, that expectation lays on me and I am beginning to crumble.

So when people repeatedly tell me, I do not understand his condition and am being ableist, I just lose the will to live. I'm doing my best and my best is never good enough so I am just not good enough. I know this isn't true but that is not always the way my emotions make me feel.

I could write a ten page essay in reply but this whole thread is very upsetting.

I've glimpsed in to my dd's future and the prejudice she is facing and it makes me feel very despairing for her tbh.

The majority of people with autism are being thoroughly misrepresented on this thread as hard, unemotional, selfish schemers, and that is so far from my experience of my DD and her autistic friends, who worry about other people, and what they may have done wrong, or may have misinterpreted during their interactions with them, that it makes them physically ill. If anything they care too much.

Also, please read all of my posts where I have repeatedly expressed my sympathy to the op and told her that no one would judge her for leaving.

You are free to make the same choice RockoraHardplace . I am aware that this is far from easy.

But when you say you understand autism or what your mother is going through, speaking as the mother of an adult child with autism, you really don't.

You cannot possibly understand or you wouldn't you write this:
"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."

Your db's behaviour makes perfect sense to me because I am familiar with what my autistic child experiences. She functions very well in her studies at university and is on track for a first in a very complex subject. But she finds the coach journey home almost too distressing to bear. Most people who do not understand autism find this unbalanced set of capabilities confusing and impossible to understand.

There is no low to high functioning spectrum. Individual autistic people can be very high functioning in one area and very low functioning in another. That's the whole essence of being ND.

When you say describe autism as a "get out of goal free card" it makes me extremely angry and frankly upsets me to the point of tears because it implies that someone with autism is enjoying being trapped in their limited life, destined to be lonely and unsociable when it can be for some a daily hell. It takes all of my DD's energy to wash and get dressed and get to lectures. She has nothing left over for socialising and that IS NOT HER FAULT.

I can totally sympathise with you feeling upset and having your needs always overlooked, that's absolute shit. It sounds like you have more of an issue with your mother than your db tbh. And again speaking from my own experience, your mum is probably acutely aware that she has overlooked your needs, she probably feels guilty as hell about it, but mothers of autistic children are not super human. We can only do what we can do. And it's not our fault either.

I can understand you looking for someone to blame but please understand
RockOrAHardplace
that your db and your mother will be feeling at least as bad as you are, if not more so.

👏 I cannot stand the cries of ableism from certain areas of the online community. It helps no-one. Damn good for you for seeing the nuance.

Catsmagic read the thread & the room. No-one's fighting here.

@Howmanyshoeboxesdoesittake
I could write a ten page essay in reply but this whole thread is very upsetting.

Stop making this thread about you and your feelings and start thinking of OP and her children's feelings. Can you do that? She is at breaking point and you are just shitting on her from a great height. Show some compassion and empathy and if you can't then hide this thread.

@Howmanyshoeboxesdoesittake you must understand that even if they are feeling worse, this doesn’t nullify the people who are caring for them, that their needs don’t count for anything?

it’s as though autistic people can do no wrong. Is that really true? And that ALL their needs must be met. But no one gets all their needs met. This is an unrealistic take on life.

I prefer Temple Grandin’s attitude that she tried her best to fit in, to be flexible, to try and meet society half way. And what a life she had with massive contributions to society.

It’s not a one way street. Everyone needs to be heard and supported. One person’s needs should not be allowed to abuse another’s.

I'm sorry if my post has upset anyone. I did state that it is not his autism that made me dislike him, it's his attitudes around it , denial and inability to see how damaging his behaviours have been to those around him.
Please note- his normal day to day behaviours we have just lived with and would continue to do so, not everyone is social etc and that's fine.
Our problems have arose because he had some sort of breakdown (again not his fault) but never the less his complete withdrawal from our family had a huge effect on my children.
This was then made worse by him refusing to acknowledge the problems, not wanting to make any changes, and worst of all minimising it and laughing in my face when I spoke of my distress.
What is have written in this thread about my distress and the effects on me and my children are only about 10% of it. The effects are life long and I will never get over it.

My goodness I can completely empathise with you. I’ve been there and I’m very very slowly coming out the other side. The constant overanalysing, trying to figure it out is maddening and I am only starting to shake it. As some other posters have said, there’s no good or bad, right or wrong (though it would have been very different for you had you known when you were younger but you’d have been more naive too) - something just don’t work, and when they don’t for so long and prove impossible to remedy (he is him and you are you, with entirely different needs) respect the situation amicably and look after your own mental health. You with both benefit your children as well. The separation pain is harsh initially and the guilt is overwhelming but just have faith and give it time. I know exactly where you are, I’ve been there and I was drowning in the same circumstances. So days I feel such guilt that I question it all but days like today I am more confident about my choices.

I don't think a lot of the negative comments were aimed at you, more likely me. Your post hit me keenly as although its my brother and not my husband, I experience something quite similar and it was weird seeing someone else writing so eloquently about their situation. And this is our cross to bear as just because someone is Autistic, does not mean that we have to sacrifice our entire lives to make them comfier, happier when they have stopped trying. We have needs too and we also count.

I've been seriously ill myself and no-one pays me a second thought except for how my absence may have caused difficulties, its all about his and Mums needs. I feel invisible.

You have been honest and thoughtful and considerate of your husbands needs but when they stop trying, not just in addressing their own needs, but also the needs of marriage and being a parent then of course you need to reconsider your position. YOU are enough and you know when you have had enough. Do not let other peoples view of your relationship and his needs influence your position. You know how you feel and you will be the one dealing with the consequences of the separation so follow your heart.

It will be difficult to begin with, because if your husband is anything like my brother, he does not like unexpected change so be prepared for another meltdown but do not let it dissuade you.

But, it may also be the start of an improvement in life for you all. He will no longer need to fend off your perceived expectations and can be who he wants to be. Your kids will hopefully be in a less strained atmosphere. And you, well to begin with the uncertainty of emotional and financial needs will be difficult and also potentially misplaced guilt until you understand you have a right to be happy too.

Big hugs and I really wish you all the happiness in the world.

If you would like to DM me I’m happy to talk through your situation and how I handled mine. It’s good to talk about these things.

The majority of people with autism are being thoroughly misrepresented on this thread as hard, unemotional, selfish schemers, and that is so far from my experience of my DD and her autistic friends

People with autism are not one collective group who all act, think and feel the same way. Some of them are hard selfish schemers, and I know that because I married one. That is my lived experience and the op is describing her lived experience. It’s not about you or your daughter.

You have had significant experience with your daughter. That does not make you an expert on all the other autistic people in the world or give you some sort of magical insight into the behaviour some people are describing. Stop invalidating other peoples experiences.

And I assure you, autistic people can lie.

@Itsallmakingsense youve been very clear that it was about your experience and your dh.

And you’ve been very careful to talk about your case, nit generalities. As have most posters on this thread.

I think it can be hard to read if you feel that it’s the way ‘people’ see all autistic people.
But I dint think anyone has said this was the case at all. And certainly not you.

Please point to where I have said that the carers' needs don't count for anything? I am that carer fhs! My DH and I have experienced the same exhaustion and hellish anxiety and daily disruption to every aspect of our daily lives that people are talking about on this thread.

And to repeat myself, I have expressed sympathy for the op several times and told her that no one would judge her for leaving.

And as someone in a similar impossible situation, the op should not feel the need to apologise for upsetting people on the thread. None of this is her fault.

The difference I suppose is that a husband-wife relationship is conditional although of course that doesn't mean to say it is any easier to separate.

I hope most people on this thread will understand that when my DD, who may not be as talented as Temple Grandin, finally burns out in thirty or forty years from trying to be accommodating, and trying to meet people half way, and be flexible, and trying to hear and support others, which she currently does, as her mother, I won't be able to separate from her except when I die.

And that's no judgement on anyone here who makes a different decision. When you have done the best you can do, you can do no more.

Of course autistic people can do wrong; they are individuals like everyone else. What they cannot do is fix something they have no understanding of.

What's wrong on this thread is that the anger and frustration is being directed towards the wrong people which is people who are born with brains wired differently. The anger should be directed at the lack of resources and support and care available for families which have neuro diverse members so that no one is left with an intolerable caring burden.

I have a physical/neurological disability.
I can promise you that I’m getting blamed for it. I’m also told I’m lazy and it’s all in my head.

Most disabled people have that experience unless they can represent the ‘good disabled person’. The one who carries on doing amazing things but differently.
The person who ends up housebound and unable to care for themselves/cook etc… ? They’re seen as a burden. Usually with a layer of ‘no way I’d be able to live like this. I’d rather kill myself instead’. Not sure it’s better tbh.

Yes! That is exactly my point! Autistic people are all different but some people on this thread are blaming autism for every single anti-social characteristic that their family member might have, when it could be a personality disorder or just a nasty person.

To be fair, even the op didn't mention that she was scared of her husband in her op and my initial replies would have been very different if she had. '

The problem is that autism is made out to be the common denominator for everything bad. And that cannot be accurate either as every person with autism is different as you have acknowledged. So it's hard not to be offended.

And if I have been going on too much about my own DD then I apologise and I will leave the thread. I'm still horrified by some of the sentiments expressed in it though. That doesn't mean I am not sympathetic to carers either as the two things are not mutually exclusive.

I agree that some autistic people can lie. Both my sons can. Quite easily. Ager 18 & 12, so not little kids.

@Howmanyshoeboxesdoesittake I think you’re misplacing the anger.
I haven’t see anyone being angry ‘at autistic people’ as a rule just for being autistic.
Theyre frustrated and at their wits end dealing with what you say yourself is a difficult situation.

Fwiw you also have a choice as a mother.
If your dd grows up agd ends up burnt out agd needs support, you can still choose to help her from afar or not help her at all. Just like you could choose today to give up and ask fir a placement by SS because you can’t cope.
The fact it’s something unthinkable for you (and with good reasons. I wouldnt not help any of my dcs) doesn’t mean the choice isn’t there iyswim.

@Howmanyshoeboxesdoesittake it's just such a different relationship between adult partners than with a child. I just don't think shoehorning parenting in here is helping the OP.

Autistic people are all different but some people on this thread are blaming autism for every single anti-social characteristic that their family member might have, when it could be a personality disorder or just a nasty person

No. It’s actually you who’s doing that.

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.

Because you don’t know this man you’ve got no idea why he doesn’t turn up. The brother could just be a prick. Who also happens to have autism.

I've dealt with this for 60 years, I have 6 relatives that are autistic and the one thing I have learnt is that there are many difference and variances in the presentation of autism. I have oodles of practical, lived experience in comparison to you.

My brother has no problems with living on his own, managing his finances, washing, dressing, travelling, driving or dealing with complex practical matters hence his official diagnosis back in the mists of time when as a HFA. And yes things have got more PC now and quite rightly so but the fact remains that my brother was capable of living and working independently unlike others in my family who cannot. Its his interactions with people and demand avoidance that are his particular issues. And just because someone is autistic, does not rule out having other personality quirks too.

I have never minimised autism but your daughter sounds like she is trying....,my brother gave up a long time ago. He needs support, I try to give it but he makes MY life very difficult i.e he moved 200 miles away and still expects the same support from me! He needs to help me to help him, he is autistic not stupid.

He does not tell people he is Autistic until he has irrevocably boxed himself into a corner and then he introduces the fact - hence me saying he uses it like a "get out of jail free" card. I stand by this. I never said your daughter did this, but my brother does. You seem to miss the point in your own comments that an autistic person can be high functioning in one area and not another and therefore my brother and the OPs DH may very well be vastly different to your DD, hence a different set of problems that you have not experienced.

Yet you appear to advocate that I have to sacrifice my entire life for him? I am not his Mum, I am ONE of his siblings.

And yes, I do have a problem with my Mum, as she does not understand autism at all and she enables him. She does not support him, she surrenders to him and always has. It does not help him, in fact it aggravates his situation as people do not know how to react when he kicks off and she just ignores it rather than smoothing the way and helping, so people avoid him. It then isolates him more which magnifies the issues which she is leaving me to mop up. As a carer, not his MUM, I have every right to express my concerns and how I am on my knees. Bully for you if you are managing, but with three people to care for, my own ill health, a full time job and my own family to look after, I am buckling. Their response was that I should get a less demanding job! So basically the load being placed on me is OK, its my job that is the issues....really! Well, yeah but less demanding job means less money so how I am supposed to support travelling backwards and forward to deal with their needs and the time I need to take off.

The OP is in a similar position, but the difference is, that he has changed and he is nothing like the man she married as he was masking, not intentionally but she didn't know that. The man she loved no longer exists and he has given up.

When you get to my age and in my position, come back and talk to me then.