Support for partners of those with Asperger's Syndrome - suspected or diagnosed :)

[Joanna112]

Hi. After many, many years of mutual misunderstandings and miscommunication and near divorce, my husband was diagnosed early this year with Asperger's Syndrome.

In the interim years leading up to diagnosis we (well … I) almost gave up several times. Talking to close friends didn't work. Traditional marriage guidance counselling didn't work. The never-ending circle of endless arguments around the same issues led me to lose my self-confidence, I suffered from depression and severe loneliness. I turned to the internet to try and find others in the same situation, someone to understand and talk to.

Whilst I did manage to find some discussion threads on a few different websites, they were hard to navigate back to and many were very negative. We were put on a waiting list for diagnosis in Exeter. After six months we were told the waiting list was TWO YEARS! I decided that, particularly in the early stages of suspecting your partner has AS and in the lead up to diagnosis as well as afterwards, the greatest support I could have would be connecting with others in the same situation. There seems to be plenty of support for people on the autism spectrum (which is GREAT!) but little to none for their partners.

I believe a website that is JUST for NT partners is what is needed.

I recently received some money which will enable me to set up just such a website. I want it to provide discussion groups, support networks, recommended reading, personal testimonies, a 'what works' and 'what doesn't' page (I have a few!), names of AS specific counsellors.

I'd really appreciate your thoughts on the site, whether you think there is a need for it, what should be on it etc. It's early days in the design but it would be great to have input from people who might use it once it's up and running.

Thanks so much :)

Poutintrout my dh is not affectionate to me or the kids. Other than that I recognise many things in your thread and the previous MNters'. Now I am looking for reading materials to help me understand and cope with and hopefully build our family relationship. I want our kids learn to deal with their dad's condition. Maybe too late for myself as I am really totally worn out emotionally and physically.

Pout...I could have written your post about Dh.
He is perhaps not as badly affected as your Dh, but I feel very lonely a lot of the time.
He is a good man.
But I am not a good enough person sometimes to overlook his problems with expressing emotion and reliability.

I've also recognized so many traits and behaviors of several family members after reading this thread -- as well as my feelings of helplessness and frustration (and loneliness) in dealing with them. Kind of stunned, really! Thanks, OP, for starting this thread.

Btw Pout have you tried writing notes, letters or texts to him? I ve found my dh seems able to response to written communication better than verbal. Perhaps it allows him to have his own space and moment to take in the information quietly. But imagine sticking and leaving notes over the places .

happy I am sorry that your DH struggles with affection. That must be tough. Oddly mine is very affectionate and likes physical closeness, just not emotional closeness. I have tried to find some info on aspergers spouses and I have found that most info seems to be about children with the condition. The only stuff I have read about spouses is that it is useful to literally spell everything out and break down what you want into bite size chunks of information. I really hate the thought of having to live like that, I wouldn't find it attractive in him and it wouldn't make me feel very attractive, who wants to act like their husbands mother?!
It is interesting what you say about writing notes. It all feels a bit depressing and all I can picture is my house covered with Post-It Notes that he will ignore

baddz I feel tremendous guilt that my DH is a good person too but yet I go round feeling so much resentment and anger towards him. I felt so guilty last night having posted on this thread, like I had betrayed him. Like you, I feel unable to overlook his shortcomings, largely because I do think that they are massively impacting our relationship. He makes me feel invisible most of the time. I never feel unburdened when I try and talk to him, I feel like all my worries are continually stuffed back down inside like some pressure cooker. Everything just seems to be about his own emotional comfort. The unreliable/ditsy thing just drives me nuts. I never imagined that I would be asking my forty something husband every morning whether he had his laptop, his keys, his phone, his travel card, wallet. I feel so tired with the constant micromanagement. On the one hand he gets pissed off with it too but on the other hand he asks me to do it. I feel like I can't win.

lala They say it can be hereditary don't they. I wonder whether DH's mother has it.

I believe people think I am a stupid bitch who s constantly fed up and complaining about dh. For the first 10+ years of our marriage I kept trying to justify his behaviour. After that I just lost control and couldn't cope anymore and started talking very negative about dh all the times. I feel guilty and depressed and I hated myself. However no one ever suggested that there may be more to it than just lack of consideration. I had depression a few times I was unhappy about every thing around my life. But now I hope I can make some headway to a better family life for my kids. Fortunately both dcs are girls and they seem reasonably popular with their peers.

Pout....yes. exactly that.

Fascinating topic.....am fairly sure that I am on the spectrum and have Aspergers......which in some ways doesn't make me the easiest to live with and yet in other ways should because my actions and reactions are predicatable....
We can learn and are very trainable I told my partner that I loved her, that hasn't changed so in my mind there really isn't any need to say it again.....I would tell her if I stopped.....but it makes her feel good, happy and secure if I regularly tell her it and because I now know that and don't want her to be unhappy so I say it every day.....
We 'talk' through things by text which helps me and she understands that I can take a while to understand what the emotions are that I'm feeling. She gives me the space to figure out how to put in to words what the feelings are and make sure that I put the effort into being able to verbalise the feelings and not ignore things.
I guess what I'm trying to say is that (some) aspies can and do express emotions when given the space to do so and provided it is something they are willing to learn

Hi Fatman, do you find learning new things to adapt changes very hard work?

Hi I wonder if anyone can help? I used to think my Dh was different because he was left-handed, now I'm not so sure. If I make a list could anyone see what they think?

-Does not listen to ANY music.
-Will never go to a concert/ theatre.
-If he loses anything it is everyone else's fault and world stops till said item found.
-Has high moral standards social conscience.
-Can not socialise as he always finds a flaw in their character/morality or they are not sophisticated enough.

• Talks in dialogue a lot the time.
• I have to agree with his ideas, political outlook etc or he gets angry and we fall out.
• He has a short temper and gets very angry.
• Will not celebrate birthdays,Christmas etc
• Have to have an argument to get him to go on holiday.

He is very intelligent think Surgeon and has renovated entire house in his spare time(electrics,plumbing,plastering,paving,carpentry etc). We have a similar sense of humour and he is great with the kids. He is charasmatic and very attractive. Any sport he gets involved in he wins. Which makes me wonder whether he is just extremely talented and us mere mortals can't keep up!

Pug I think people with AS generally are clumsy, don't like changes and niveous. My dh doesn't like arguments as he d rather just walk away. But you said he renovates, good at sports, argues. So don't know.

Pout, just now have a look in amazon website if you key in "asperger in lover" there are some books showing re relationship.

Did the website for partners of Aspergers people ever get set up?

Sounds oh so familiar. Do you know of a support group?

I am so glad to find this thread, I have been struggling to cope with my depressed, non-diagnosed asperger husband while dealing with my own depression and trying to limit the impact on our two young children. The kind of website you are proposing would help a lot x

I have namechanged to post this.

I know this is quite an old thread but was just wondering if anyone who shares my experience is still around or whether there is a more recent support thread for people whose partners have Aspergers. My DH has just been diagnosed. Ever since we got together more than a decade ago there have been things about him that I had felt were unusual or difficult but had always put down to his family background etc. However the combination of us having our DC and him having a stressful job significantly worsened everything to the point that someone suggested to us that we look into Aspergers. Lo and behold, he has been diagnosed.

I've been reading loads of threads about people with AS partners on here and so much of it is so familiar. DH is high functioning but the main areas in which he struggles are communication, emotions and conflict. Him getting angry or us having an argument has always resulted in meltdown for him, where he literally can't speak until he has processed it all, or when he does speak he comes across as incredibly nasty and cold.

The meltdowns, while they tend to only happen once or twice a year, have had such an emotionally exhausting impact on me. Last year, the big one he did have meant he barely spoke to me for more than a month. I had no idea how to resolve the situation and felt paralysed as to what to do. I have terrible anxiety related to his moods and one of the things I am trying to come to terms with (and figure out how to deal with) is the affect all these years of difficult situations before he was diagnosed have had on my mental health and emotional wellbeing. I have really been able to identify with all I've read on older threads on here about feeling on edge all the time, feeling unsupported emotionally, low self-esteem, feeling as if I am needy and pathetic for wanting emotional support from someone (because that's how he has made me feel, unintentionally or not), feeling as if I 'don't have a voice' because he sees any discussion about things that have happened as uber-critical and an 'attack' on him, and cannot resolve stuff. I feel as if over the years I have shut down emotionally a little bit more with every meltdown.

Basically, if anyone has any recommendations re: resources, things that might help, that would be great. I think I am going to self-refer to local mental health services because I am recognising that I really need some help in that way. Just knowing that there are other people around who understand is a start. As he has only just been diagnosed we have not really done much talking about how we will move forward.

Hi Wrungout,

I don't know if there are other support threads about partners with AS but I'm glad to see someone else here :)

I'll post properly later (I'm waiting in the car just now & on my phone), but I wanted to say I'm sorry you're going through this,

My DH was diagnosed about 4 years ago though it didn't really help us. He was quite depressed after for a long time.

I'd love a thread where people in our position could support each other.

Take care. X

Hi girls, u could always start a new thread and provide a link to this one, as well as any older ones you've found.
In the same way as the Brave Babes, the Dry and the Stately Homes threads start afresh fairly regularly.
Cos there's a wealth of great info on here it'd b a shame for it to slip into the archives, also then u wouldn't need to resurrect a Zombie Thread. Keep it current

Wrungout - a website has been set up by a mumsnetter. The address is:

www.different-together.co.uk/

If you go on the forum (you need to register) you will find a very helpful bunch of people in the same sort of situation. I really cannot recommend it enough. Hope it helps you.

Thanks for this thread and website. I really felt I was being abused at times.
I've been with him two years and he still hasn't met my kids or grandkids. Hes never knocked on my front door. Same things, same foods, refusal to try anything new. Sex is such an issue too. I'm also a relapsing alcoholic. Lonely, no support anywhere and so frustrated.
We was watching the a word. Turns out a dr had said all this when he was younger. And he never told me this! In two years?
Glad I found you when I'm so close to walking away.

New to this. I think my husband of 48 years has AS and I'm quite concerned now. And relieved. Can I handle it and make our marriage better than it has been?

This is truly interesting stuff.

Thank god I stumbled on this thread. It's been like the clouds opening and the sun shining down after a long period of stormy skies ☀️.

I thought I was going nuts. We've been married for nearly five years and during that time I've seen my world shrink and shrink, due to the amount of headspace I have had to give over to adapting to DH.

He is a wonderful kind, loving man in many ways. But he has some total blind spots.

The thing about interpreting any emotion I show as anger rings so true. So does being very literal, never resolving the same issues which crop up again and again, lack of empathetic response to distress, lack of communication, the same things happening again and again. I have really felt locked in and imprisoned at times.

I have complex PTSD from childhood neglect/abuse- I think my mum had AS undiagnosed and that was one of the contributory factors to the PTSD. My dad was abusive and I think her lack of empathy around that compounded the damage he caused. I think he also caused her PTSD and depression with his abuse and her AS made it even more difficult for her to process that trauma. I don't think her AS would have caused PTSD in me in itself, but after my dad's abusive behavior, her PTSD and AS made it difficult enough for her to cope and she wasn't able to support me/some of the features of her emotional unavailability compounded the effects of his abuse/neglect.

Having briefly read some of the links around Cassandra Phenomenon/Ongoing Traumatic Relationship Syndrome, I think some of those situations act as a trigger for that PTSD.

So in practice, at the time DH is having a meltdown, I am having a flashback/panic attack, and we drive one another round and round in that circle. I have flashbacks when he has meltdowns because when I was little my mum sometimes used to hit me when she had meltdowns or panic attacks (only after my dad was physically abusive to her) or she would be emotionally withdrawn for a long time after he had been abusive to us both and I wasn't able either to comfort her or be comforted by her. I see his behaviour as being similar to hers, so I have a flashback, either because I think he is going to hit me (he never has) or because I think he is about to lock me out emotionally for days (which he does do).

As I am in an emotionally heightened state, he inevitably reads it as anger, so this overstimulates him, he closes down, and we spiral round and round. I get more and more scared/withdrawn and he gets more and more overloaded and unable to talk.

I've been trying to unpick all this for years and this might be another piece of the puzzle.

Can I still please join in?

I have been suspecting since long time that OH brother is Aspi and always thought OH might be on the spectrum.

There was loads of issues between us and with the possibility he might be on the spectrum I tried to learn to interact with him in a different way.

For example I try to discuss a matter with him, he listens but will not say his opinion. So rather than getting upset, thinking he did not listen properly I now ask directly: but what do you think?

We were at a stage were I thought finally we managed to know how to interact with each other until recently.

A very big issue came up and I thought this will be the end of the relationship, I tried so hard but this is now to much as it did hurt extremly.

Having found this thread has helped me a lot today and I can now see a future between us again.

I am now pretty sure he is on the spectrum whereas we possibly will never get a diagnosis.

Within their familiy his brother is not sensitive to light and this is why the curtains are always drawn, the explanation for them is he only has eyesight of 20% in one eye.

Many things I have read on here tonight do however fit on my OH exactly.

For example the issue with the TV. He will be absorbed watching TV, his daugther could choke next to him and he would not notice.
Very helpful I found the explanation about the eye contact.
It made me furious when I spoke to him and his eyes stayed glued on the TV rather than looking at me.
I demanded he should look at me.
I now understand why this makes him angry.

I really want to say to people on here who provided insight into being Aspergers, you helped me a lot.
For us it is simply not possible to understand why you would react in a certain way since we are used to conpletely different interaction patterns.

Everyone who posted about how their partner is also helped me a lot as I saw many similarities between what was described and my OH.

My OH would for example never hug his daughter on his own attempt. There was a point when my daughter questioned this behaviour. I explained him and noe and then told him, he should hug her.

This is only one of the little things, there is so much more. But I agree with what everyone was saying: I also reached points of exhaustion where I thought I can deal with it anylonger but always tried to look at the good side of him. He is very truthful and even if it does not like on the surface, he is very caring and he would go miles to get something for my daughter or me if we asked him to.

He also does not have any friends and it is frustrating that he never wants to come to social gatherings when we have invited and it is even more difficult that we never invite people. Also he never goes on holidays.
But when we go for a family outing he is always in and the 3 of us have a lovely time I do not want to miss!

Thank you so much everyone, this was very helpful on here and I am glad the thread is still going even after years!

Please look at www.different-together.co.uk/ (sorry I can't insert the link). There's a wealth of information on the site and support on the forum, as well as meetups for those who want them