Undiagnosed Husband, need help

Hi Lucia I am female and 58 years old. I have just (yesterday) been diagnosed with ASD. There have been significant tensions in my marriage due to miscommunication. The process of assessment and diagnosis has helped us as a couple in several ways.

Although not therapy sessions as such the assessment meetings included information that made me feel much better about things. It was much easier taking advice from the psychologist because it was emotionally neutral and done in a way designed not to make me defensive.

The combination of seeing the psychologist, reflecting on my life in order to send information to the assessment team and discussions on this forum helped me enormously. I could see that aspects of my behaviour other people find problematic are linked to being autistic but aspects of NTs behaviour are difficult for me to deal with too.

When I got feedback on my diagnosis yesterday my husband came in for the last two thirds of the meeting. It was a mini relationship counselling session with us learning about the reasons for our miscommunication from someone who could take a neutral stance. The interpretation of what each of us is trying to communicate, but somehow failing to, was really helpful. The psychologist explained to my husband that I often care deeply but struggle to show this because of my ASD.

We are going to have some sessions with Relate asap and we will read up about NT / ASD relationship issues in the meantime. The psychologist gave us diagrams on how to handle meltdowns and how to manage stress levels to reduce meltdowns, and Alis Rowe cartoons illustrating some of the issues she had identified when assessing me. We talked through all of this with lots of emphasis on us not blaming each other but understanding how are different communication systems cause misunderstanding and emotional upset.

In the New Year I am going to go to an education and support group for newly diagnosed autisitic women being organised by the psychologists. My husband was encouraged to access support from ASD partners' groups himself. It was quite an emotional meeting but it felt like we were making progress at last. We were strongly advised not to try and negotiate things relating to our marriage without a mediator to begin with. There is a risk of us getting heated and slipping back into blaming scripts.

Diagnosis isn't right for everyone but I am glad I went down this route. I could not face having to persuade my GP to refer me then waiting around for an indefinite period. Instead I referred myself to a specialist service and had an initial assessment within a short time. The cost is about £1250 and if it helps save my marriage, save my sanity and save my job I decided it was well worth paying.

Have you looked into joining any of the groups specifically for partners of autistic people? I know how helpful I have found it learning from other autistic people here. The psychologist's main advice to me was to reduce stress levels and over expenditure of energy so I can function much better. Combined with accommodations other people can make for me this should make life much easier all round.

I've run away from relationships and burnt bridges many times in my life. Some of my behaviour towards my husband is because I'm scared of being rejected. I'm like an engine without a thermostat or temperature gauge. I can boil over very quickly and I don't recognise that I'm getting upset until it's too late to avoid a meltdown.

If you feel there is something in your relationship worth saving then it is well worth fighting for, but you need energy in order to do that. In our case I can now see very clearly that in order to negotiate we need a mediator to help us overcome our communication problems.

With very best wishes.

How much is your daughter aware of autism?

He thinks that our daughter is impossible to talk  because she flies off the handle when he speaks to her. I have tried to explain to him that often it is down to what he has said to her & the way he has said it that provokes the reaction as he can be quite tactless . I think she is losing respect for him due to his attitude to life & doesn’t always value his opinion. Some of that is due to approaching puberty. I am concerned that if this continues it will destroy their relationship for good. I have tried talking to him about it but he can’t see it & just thinks I should be backing him up. He doesn’t accept that she doesn’t react the same way to me. Just accuses me of criticising him again 

Do you know if I can do that through my GP? Last time I went I was reluctant to take medication & found it difficult to talk about so felt a bit dismissed. I feel that now I should go back and ask for help again. I feel so low that it is all affecting my mental health & trying to be strong is not helping. I feel that I am bearing the brunt of all his negativity and there is so much resentment on both sides now that it’s difficult to see a way back. I definitely think professional help would make a difference and would prefer to do it together but don’t think I will get my husband to see someone jointly. We went to Relate once but he didn’t want to go back. He said that there was no point, that I just needed to realise that I was being unreasonable & they would just tell me the same. 

I don’t think he would ever talk to anyone about it. He really does seem to be closed to everything. Although he believes he is on the spectrum, he doesn’t think that is the problem between us, he just thinks that I am wrong about everything. He thinks we can’t agree about anything & refuses to accept that any of his behaviour is unreasonable. We had a big argument the other day triggered by his impatience & unwillingness to listen to what I wanted to tell him. He said it was boring & I should just keep it to the minimum. He couldn’t see how his rudeness was upsetting to me.

i don’t think he really does want to keep our marriage going to be honest. He only really values money not people & I think the only thing stopping him leaving is that it would be expensive to divorce. His ASD is complicated by problems in his relationship with his parents and how he feels that their divorce & behaviour since destroyed his life. He doesn’t believe that there is any way out of that & won’t speak to anyone about it. I believe all this has caused mental health issues, probably depression. Most of which could be helped if he let it. We think his Mum probably has ASD also and what upsets him about her behaviour is pretty much what upsets me about his but he can’t see it. 

All this does make me even more angry with the 2 Dr’s he has seen. If they  just listened to him they would see that he could help him in so many ways as well as with a diagnosis. They don’t seem to realise what it has taken for him to go there and speak to them & then for it to be dismissed as nothing. 

Giving up and breaking up my family is a real last resort & would devastate me. I don’t actually feel like it is a solution as I can’t see that any of us will be better off as a result. I am   feeling so sad right now but would Life be any better if the family was torn apart & I had to negotiate with him over everything. I am not sure that I am emotionally strong enough to deal with that or risk losing my children. 

I agree. A lot depends on the individual and his or her willingness to seek help.

Lucia22: the fact that your husband doesn't want a diagnosis (I also understand him) does NOT mean you can't seek help for yourself. You could always choose to see a psychologist or social worker. That would actually also make clear to your husband that you are struggling.

Lucia22 said:

. I want him to get a diagnosis but he doesn’t think there is any point because he doesn’t need any help or support but I do. I find it so hard.

An adult diagnosis won’t give you or him support. There is little support out there, which is why I use the forum.

Hi Lucia,

So sorry to hear how difficult things are for you right now but from what you've written I truly believe you have the strength & desire to overcome the issues & keep your family together.

Absolute shame on the Doctor who didn't refer your husband for a diagnosis there are many similar stories on this forum and my own experience of seeking a diagnosis was not easy either due to the closed mind of my GP who kept on insisting that I was suffering from depression. I took written evidence to back up my reasons for wanting a diagnosis and the GP hardly looked at this but I was fully prepared & determined to get a diagnosis and kept on insisting until he gave in. My advise to your husband would be to see another Doctor and taken written evidence to back up his case, a short life history outlining his characteristic, behaviour, issues & problems going right back to childhood. (

Lucia22 said:

Communication is st an all time low

Easy to say I know but communication between you is absolutely vital, you need to talk to each other and be totally honest both with yourselves & each other so that you can appreciate and understand how you both feel and what you both want for your futures. Without knowing you both personally it's difficult to give too much advice but If you both have a strong desire to stay in the relationship & keep your family together trust me you can do it. My wife and I both now understand that autism is the enemy and cause of almost all/any problems between us, once you understand that it takes away any resentment or bitterness between you and together you find ways to manage your lives & minimize situations that cause problems.

Lucia22 said:

I think he would be happy just to not speak to any of us at all, to him that would be a solution

I can certainly relate to this, when I'm overloaded with stress anxiety or any other issues I just don't want to talk to anybody and need to be left alone until I've recovered, my wife understands this now and doesn't feel hurt by my moody silence safe in the knowledge that it's not her fault and in my own time I'll get back to being a reasonable husband again.

Bottom line is if your husband truly believes that he is on the spectrum and he wants to save your marriage he will find the determination & courage to seek a diagnosis, I would also strongly advise that you both learn everything you can about autism which will help you understand the many complex issues involved and in turn help you move forward together.

There's so much more I could write but I'll leave it at that for fear of waffling on too much.

Best Wishes

PS - Would be interesting to hear your husbands side of the story, I'm sure I'd be able to relate & understand things from his perspective.

Dear Baggervance

thank you so much for your reply. It means so much to me to hear someone who is not telling me to end the relationship. It’s been such an up & down month and many times I have asked myself if it is really worth it all. It’s easy to say that it’s not working & that I would be better to leave but another to do it. I think it would destroy my children to break up our family. He would still be their Dad even if he wasn’t my husband & so we would still be involved in each other’s lives. I am not sure that It would make me any happier. 

My husband has been back to the Dr but yet again was told that it would take a long time to get a diagnosis & did he really need it?. Would it really make any difference? They don’t want to bother.  This is the 2nd time he has asked & been put off. It’s so frustrating. It would make a difference to me. Even if he doesn’t think he needs any support, I do, but I can’t get any help unless he gats it first. I feel so desperate. My son is also on the spectrum. He has been assessed but again although they won’t give him a formal diagnosis at this stage, he is getting support at school which is helping him with his social difficulties. I am really hoping that this helps prevent him ending up in the same situation as his Dad. Things are pretty bad at the moment. Communication is st an all time low. I think he would be happy just to not speak to any of us at all, to him that would be a solution. He has upset me several times over the last few days, I am feeling so stressed but he just can’t see it. He thinks I am over reacting or just crazy. 

My Dr says a diagnosis for him would help, his Dr says he doesn’t need one. Not sure I will manage to get him to go back yet again. 

Hi Lucia, 

Oh boy the description of your husband and relationship issues is a carbon copy of me & my wife and I hope the following comments will help you.

I am 61 years old, married for 40 years with 3 grown up children, after a lifetime of issues which I tried very hard to understand & overcome I eventually discovered 'Aspergers' and was officially diagnosed in April 2018.

I think a diagnosis is vital for both you and your husband, I didn't feel that I needed or wanted any help or support but sought a diagnosis so that me & my wife could understand my behaviour and characteristics which then allows us (me) to manage our lives in a way that minimizes situations that will cause me problems.

My diagnosis hasn't changed me & I can still be very selfish at times when I'm really absorbed in what I'm doing, I still rant, rave and get abusive with my wife but we both now understand that it's not personal, not hatred, not bullying, but my reactions to situations that I find difficult to cope with (meltdowns), the situations that cause me problems can be the most trivial stupid things but I'll still react because that's how my brain is wired - I hate being like this but I just can't help it and I feel truly sorry for my long suffering wife.

I fully acknowledge and understand that living with me has not & never will be easy for my wife but with the diagnosis & understanding we now have of my condition it has made things so much better for both of us.

Just like your husband  I have no friends, my wife & children will always be the most important people in my life and I'm enternally grateful for there love, understanding, tolerance and kindness and I'm sure your husband feels the same way so please stick with him and encourage him to get a diagnosis.

Best wishes & good luck to you both 

Autistic or not, shouting at you and the children is not ok. That's bullying. My mother is on the spectrum, too, and my memories from my childhood are mostly of her yelling at her family. It affects me to this day. I hope between you you can find a better way to communicate with each other so you can both express yourselves, be heard and support each other.

Hi Lucia,

You might find the information on our website for partners of autistic people useful and there are some suggestions and links there for finding support.  https://www.autism.org.uk/about/family-life/partners.aspx

Alternatively you might like to contact our Autism Helpline team who can provide you with information and advice . You can contact the team via telephone on 0808 800 4104 (Monday to Thursday 10am to 4pm, Friday 9am to 3pm). Please note that the Helpline often experiences a high volume of calls and it may take a couple of attempts before you get through to speak to an advisor. Alternatively, should you prefer to send a message, you can do so via their webform:

https://www.autism.org.uk/services/helplines/main/questions.aspx

I hope that help.

Regards,

Kerri-Mod

Hi Lucia,

Whether your husband is on the spectrum or not, your starting point is to tell him how you currently feel and the reasons why. 

You are clearly carrying most of the work in your relationship that is also the 'glue' that keeps it together. Be clear (and explain literally) what you find difficult and in what ways you need his support. 

Hope that is helpful

Saz