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 :)

Put first you have every right to be on this thread!

I think that was is happening us that your family has decided to put their head in the sand so to speak and ignore the diagnosis because it's easier like this.
It might be because they have a false idea if what AS is ie they can only think about Rainman type if person for someone on the spectrum.
It might be because they have adapted to how you are, accepted it fully so they don't see it as a problem iyswim.

I suppose that if you have sought a diagnosis, it's because there was something that wasn't feeling right. Maybe you could to them about that and tell them about your struggles and how AS explains it? Do you think they would listen to that?

I believe my DH is on the Autistic spectrum too.

I've always found him lovably frustrating. He has zero emotional intelligence, he doesn't pick up on atmospheres, body language or any subtleties. He takes everything literally.
In groups he processes so much slower than everyone else that he is a couple of minutes behind the rest of the conversation. He exists in his own world where little penetrates. He also happens to be one of the kindest men I've ever met.
It's like living with a kind wall.

When we were in our thirties I realised I had to teach my husband about emotions such as empathy and sympathy. He applies the rules he has learnt without really feeling them but he tries!
I went through a period of reflection when my son was diagnosed with Aspergers. My counsellor leant me a book called Aspergers in love, about relationships with Aspergers adults. It was like reading a book about my husband. Understanding him meant I was able to forgive all the frustrations and difficulties I'd had living with him. When I started speaking to mutual friends about Aspergers I realised they realised long before I did about my DH.

Having two people in the house who think and process the same way is interesting. I'm the odd one out.
One thing I have learned is not to look for emotional support from my DH, he just can't do it. I go to friends or counsellors for support, it works for me just fine.

Hi Lady

The thing is they haven't ever adapted to how I am. I have been forced to adapt to their way of being, and I've struggled and struggled with trying to fit their expectations of me. My AS is mild so I can pass off as 'normal' quite well but it is absolutely exhausting. I have learned the 'rules' for lots of different social situations because I was shamed by my parents when I got it wrong. I had a horrific childhood. As well as physical and emotional abuse they also found it fun to tease me as it was so easy to wind me up. I am one of four kids and I have for step siblings too. I think I became the family scape goat due to being an easy target, so they weren't a nurturing and understanding group of people. Since I can pass as normal they don' t want to hear about how hard it is for me, and if I bring it up they are not a willing audience.

I think I may have to force a conversation on my dm and directly ask her to explain the tutting and changing the subject if I mention all things aspergers.

Put I'm sorry to hear that your family is less than sympathetic. It sounds like they are denying your reality. Do you still live at home? If so that must make it worse for you.

My DH and DPIL were like this while I was pushing for my son to be assessed for ASD. I also saw it with the DP of a friend who is on the spectrum. I believe it's a form of denial. I wonder whether they would be open to family therapy or a session with an expert in ASD.

It's their problem, research, educate yourself and gain strength from your knowledge about how Aspergers affects you. Get support from people who understand.

No I don't live at home anymore, good god that would be a nightmare! I'm married with 2 dc. I could suggest a session with my dm, but I don't expect her to be overly keen. We had family therapy for a while when I was a teenager as my step father was very ea, but it didn't help much at all. Dm looks back at all of that as a mistake. She is very keen on not doing or saying anything to rock the boat. Due to my AS traits, even though I don't mean to, I always end up rocking some boat or other!

I will talk to her over the next few days and see how it goes.

Agree with TheAccidentalExhibitionist.
What you are dealing here isn't just about them not understanding AS. It's running much deeper than that.

Maybe the sort of support you need isn't about you having AS. It's about how to deal with parents who have been abusive.
Maybe your issues actually don't have anything to do with AS (even though I am sure it made things even more difficult for you :() and everything to do with them.

Have you had counselling yourself? You could try and find a counsellor who knows about AS and explore what has happened in the past before trying to talk again to your dm.

Good advice lady

As an aspie (not a term I've got a problem with) I'd really welcome a site like that. My dad is very very likely to be one as well and not knowing how to deal with it has been very hard on my parents relationship.

I'd hope that it would be strongly monitored for non-abusive attitudes though. After my diagnosis my father suggested that he might have a similar condition to me as much was recognisable. My mother now uses this to emotionally torture him. He's a broken shell of a man now, with absolutely no ability or knowledge of how to respond to her constant cruelty. His constant bafflement and puzzlement is heart breaking. She deliberately sets him up to fail and savages him when he does.

People saying that they feel it is unfair about having to adapt to an Aspie partner. Yeah, it does suck. I can't speak for all Aspies, but most do know it sucks and the guilt and shame eat away at us all day. But I would remind you that while you have a choice to adapt to one person, we have no choice to adapt to more than 6 billion neurotypical people. This can, at times, feel a little unfair to us as well.

The next part is a 'pro-tip' from my own personal experience. It's radical (and in some parts illegal), so feel free to ignore, report, delete or whatever.

If you want to feel that your Aspergers partner loves you and truly experience a feeling of emotional bonding, you're going to need to drastically alter their brain chemistry. I have found that cannabis, smoked with friendly people who share a similar hobby or obsession was crucial in developing appropriate social behaviours as there was no emotional penalty for being a bit odd, going off on a tangent or not understanding something; Nobody is neurotypical when you're high. So you make a mistake, everyone laughs with you (crucial) and you learn that it's not scary to make a minor faux pas so you can correct yourself, update your script and move on. It's given me incredible confidence at even clean-skin social gatherings and a social group who taught me to pass for normal.

MDMA seems to eliminate the emotion gap between our hearts and our eyes, gives intense feelings of empathy, a desire to touch and be touched and hammers home with serotonin and dopamine that all of these things are positive. I cannot emphasise enough what a boon sharing it with my partner has been. I got to feel normal, she got to feel ME. It was incredible.

Just an idea.

It's funny you should say that Faust... since my daughter was diagnosed with AS and I have read more about it, I have been thinking increasingly that I am probably on or very near the spectrum too. It makes massive sense of so much about me and my life to date. I'd been thinking in the last few days about my past drug use (fairly extensive), and especially my cannabis use - I smoked daily for a long time. I think that, at the time, I did benefit from the insight it gave me into my own head and into human nature. I wasn't a self aware person before that and had very little understanding of others and how they think.

There were downsides too though - hyperawareness and paranoia were the flipside of that insight, for a start.

And your poor dad... Can't you make him realise that he doesn't have to put up with her abusive behaviour?

Speaking of abusive, Put your family sound absolutely horrible! Have you had therapy to help you deal with how that kind of treatment must have affected you?

Very interesting Neo. Not sure it would be welcomed by my law abiding DH but I can see how it would be beneficial both for the AS and the NT partner.

And :(:( about your dad. That is so NOT acceptable.

Neo that might have been something I'd have done when I was in my early twenties but not anymore. I also wouldn't recommend drug taking because of the long term psychological effects. Without wishing to sound patronising and I probably will anyway I hope you are able to find and replicate those effects without taking drugs.

I also have and extensive history of drug use (cannibis, speed, ecstacy) and the only friendships that I have ever felt truly comfortable in are with those who have done drugs with me. Interesting to read other aspies have found the same.

Lady, I think you're right. Dm, df and step father are all ea to some degree so I can't apply the 'rules' of reasonable behaviour to this situation as they are not reasonable people. I have been in therapy for 2 years, and have a wonderful dh so I have a good support system to keep me on track.

Thanks for replying

Put - jumping in here after a long time of being off piste. That is, away. Not actually off or p*ed!

I just wonder if your dm is unable to discuss, learn or accept any of what you need to talk about because;

If she were to open that can of worms she would need go waaaay back and address her parenting of you, her part in how she made you feel then (not happy) and how she makes you feel now (not good). That makes her a less than perfect parent. Maybe she's scared of being guilt ridden because she knows it?

I was a single mum for 12 years and Lord knows, I feel guilt every time my children talk about anything that was less-than-lovely in their childhood. Mind you, I am velcro to guilt .

I'm so glad you are married with a lovely dh and have children. All these experiences, especially the rotten ones, can all be turned around to make us better people - and parents! Just imagine what a grand job you are doing as a Mum with all that history of How Not To .

Amedea - I'm sorry I've been away so long! Am going to pm you now .

Joanna, i'm sure you're right about her not being able to deal with the guilt.

The thing is, and this is what confuses me, we have been getting on much better since the diagnosis as I feel much more forgiving of her. Instead of blaming her and her bad parenting for my perceived 'inadequacies', I now know that she hasn't damaged me as such, and much of it is actually how I'm neurologically wired. I would have thought she would welcome this new knowledge and be interested, as it almost let's her 'off the hook' IYSWIM.

I know she's the same person and nothing can change what she did, but in accepting and forgiving myself for being odd and struggling in an NT world, i've found the ability to extend that forgiveness to others. I don't think she gets any of it TBH, and while she keeps refusing to engage with me about it she never will.

I just wanted to say that I rarely post but today I put up 'Sunday Moan' in Relationships as I am nearing the end of my ability to support a marriage on my own.

This thread must have been fate. So much rings true.

I've been asking for years for DH to look at me when he speaks. His eyes flick everywhere even when there is no tv on, children around etc.

If we do not have sex there is NO other emotional support - no hugs, kisses, nothing. If I initiate a hug then it ALWAYS leads to a grope and then a sulk as I wriggle away.

Will not talk about anything that needs an input - he leaves it to me to decide as 'I am better at all of that'.

Hates social get togethers, small groups only.

He is self employed and works on his own. Never asks me about my job, my day, says he doesn't understand what I am talking about.

I put it down to him just not growing up!!!

The sad thing is I work in a school and I have had so much training on children being on the autistic spectrum and ways to help, I feel awful that I never realised this could be him with it, even worse that I have constantly been shouting and nagging him to do something over and over again, fed up when nothing spontaneous happening, fed up because I have to organise EVERYTHING. It's like a light bulb - the same holiday destination, the same colour paint everywhere, the same routines week in, week out, the same meals, even living in the same house for nearly 20 years.

I am feeling so lonely and tired from trying to input some excitement back into our relationship. So, thank you for this thread - I will read with interest other stories and how to deal/cope/carry on.

My Dp thinks he has asp or something similar. He has problems with social interaction, body language, communication etc. it has caused massive problems in our marriage with him miss reading body language and seeing things that are not there. He is v aware of it and can overcompensate. He thinks that everyone is speaking a language he can't understand and becomes v paranoid. He recently saw his GP to ask for a referral but was refused as he was told that if he had asp he wouldn't b able to run a business, have a family or a marriage. He struggles with all of these thing at times. I feel in real need of support as I fear that I will not be able to help him or cope with his behaviour. He accuses me of doing things due to paranoia and miss understanding body language. It affects my confidence and i worry about everything i do and how he perceives it. How does he get to see someone who can diagnose, if its not asp then I definitely think something is wrong.

I recognise the relationships you're describing Rover and Lucia
Lucia your DHs GP is an ass. People on the spectrum are perfectly capable of running businesses and being in a relationship. OKAY, it definitely has it's challenges it it's possible.

Yes Lucia22, I go out with female friends and get accused of having affairs, but if I didn't go out I would never go out!

In fact he thinks anyone working together will all be having affairs 'because they all do', and yes, sadly, that includes me. Though I am NOT, nor have done, nor plan too either.

It came to something the other day when I asked DH to pick up two of the children, (he would have to wait about 15mins from the first to the second) he said he couldn't as he had something planned and couldn't wait and would come on home with only DS. Our DD was shell shocked to say the least. He didn't understand at all what the fuss was about, his afternoon was planned and waiting for the short time was going to blow away the plans - it won't and it didn't - I picked up DD, though I had to cancel ALL of my plans as I was going to be 30 miles away. Totally inflexible to the changes/demands of a family - a trait that becomes more and more obvious.

The sad fact is that my DH wouldn't dream of seeing a GP nor would he read a book - he doesn't read at all.

My DP is so sure that I have been unfaithful that he has said that he can't deal with it anymore and wants us to separate. I have never and would never be unfaithful which makes it all the more unjust. He says he can't trust me. I am devastated. I have no way of proving that he is wrong. He just won't believe anything I say.

I'm going to research this. If more and more things ring true then I will talk to him about this and ways to handle our relationship.

Mine has never suggested us to separate but it is getting to that point for me - we talked a few months ago about us and he told me it would break the children's hearts and he would make sure I got nothing.

Lucia22 - I'm sorry that separation is the option given to you. I'm not trusted either and I just say that is his problem not mine. He has full access to my phone and email if he chooses. He just tells me that I would be crafty enough to have another phone and email and reading my personal stuff would not tell him anything. How to convince someone that you are NOT having an affair is hard, especially when they can convince themselves otherwise. Perhaps others can advise you on that one??

I am determined not to give up. Our children would be devastated if we separated, it's not something that I want at all. I vowed to support Dp and I will but ts hard when the negative things are directed at you.

Rover - I completely understand how you feel, why should you be made to feel like that when you are innocent. It's v frustrating. We didn't meet until we were in ur 30's and I keep saying that surely if I was such a terrible person then someone would have mentioned it before.

I am going to try to see a doctor about this and convince them that DP would benefit from further help. The trouble is he has now gone into a cycle of believing the dr and saying that there is nothing wrong with hm and its everyone else a fault. I feel like I am n a game if chess and only he knows the rules. I trying to make the right next move but always getting it wrong. Surely life shouldn't be like this!!!!
DP slept in the spare room last night for the first time ever so I am feeling really negative about it this morning. Can't face work, I am fed up with putting on a brave face but don't really have anyone that I can talk to about it.

He doesn't have the issue with eye contact like others. It's pretty much a communication issue, perception of situations, reading body language, seeing signals that are not there. It causes paranoia and confidence issues. I think it's getting worse. Although he as still achieved a lot in his life so far, more than a lot of unaffected people, it is causing problems in his relationships with other people and I really think a diagnosis, even if it turn out not to b asp would really help.

Rover -- Would you show this thread to your DP?

Was your DP like this when you met or has it got worse?

He wouldn't look at it as he tells me nothing is wrong. Aghhhhh

Going to ring Relate tomorrow and make an appointment. If he comes with me that is a real step forward. If he doesn't want to I will just go on my own and have someone one to talk to about it all.

I will try and get him to see a GP about it all, but deep down I know he won't go.

Did I know what he was like before? Difficult. The first few years we were both working full time, but I think back and the social life was down the pub on set nights to meet the gang. I do remember organising the wedding all by myself and booking the honeymoon though!! When children arrived he wasn't hands on, he didn't even take any time off work for any of them. I have always organised the children's activities, always been the school run mum and don't get me wrong I loved being a SAHM. Then I started to want to work part time and he wouldn't share the workload at all so I did everything - children, housework, working, cooking, etc. I just put it down to him being old fashioned. I always have to give him lists for Xmas and birthday - I've given up now and said not to bother this year. I do all the birthdays and Xmas organising even down to the gifts for his family. He has read 1 book since I've known him (20+ years) and that was on his hobby. Magazines are on his hobby and we have thousands!! All under the bed and in wardrobes.

Am I willing to give it a go? I have raised 3 children almost single handled, got a good job which I love and I really feel tired at the thought of life just with him with no one to talk to in the evening, no one to discuss events, no one to share ideas and it is sad to realise that I have never been surprised once with flowers/gifts/nights out in all the time we have been together.

People might think I'm a bitch to give up on him when he hasn't abused me or threatened me, but I really can't see any way forward and after raising three children I might be a little bit selfish and have a little me time.

How about you Lucia22??