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 :)

[LilyRose88]

Thank you to the two posters who have empathised with me. It is very difficult as others have said as the non-AS partner I have nowhere to go for help and sometimes it is good to 'bond' with others who have similar experiences to me. I love my OH dearly and want to do everything I can to support him, but it does mean that I use up so much emotion and effort that I often feel drained, unappreciated and lonely. I have adjusted my life and my expectations considerably to take account of my OH's needs, and sometimes it does feel as though I am the one who is compromising all the time. If I do talk about my needs my OH either gets defensive and feels that I am criticising him or he briefly acknowledges what I have said and then goes on to talk about himself and his needs. He does recognise that it is difficult for both of us, but his stock answer is that he likes living on his own so maybe we would both be better off if we parted.
I do realise has difficult it must be for a person with AS to read about the impact they are having on their partner and to see what other people say about AS, but this thread is for people with partners with AS.

[amberlight]

notagiraffe, I am married to a man who is on the autism spectrum. If you don't want an autistic perspective on things from a national adviser, that's absolutely fine - but I did not say that I had no respect for your feelings. Me being frightened by what you wrote isn't a statement about your feelings. It's a statement about mine. This isn't a private board, as we know.
What people write here can be seen by people from all over the world. I worry about what they think is OK and what they may learn about autism. What they need to learn is what is hugely triggering for autistic people, I'd say. You've heard from people with autism that particular expressions are a problem for us. It's because of the number of times in our lives we've been told we're not really human, that we're not people, that we have no soul, that we're a waste of space, retards, and many similar things. Not by you, no, but the 'dead behind the eyes' thing is a trigger. A safe space needs to be for those of us who are also living with someone autistic as a partner.
Where do you think people like me should go?

[cheapskatemum]

Hi again, LilyRose88. Sorry I couldn't say much yesterday, DH was right next to me on the sofa. DH doesn't have a diagnosis of AS, but I have studied autism to Postgraduate Diploma level and he has several AS characteristics (some shared with your DH). DS2 has ASD, SLD and suspected bipolar disorder. It has been very hard parenting our 4 DSs and coping with his lack of empathy in particular. He doesn't have friends and has fallen out with his only DSis, to the extent that they no longer speak. I turn to friends for help and support and he becomes jealous of the time I spend with them. He has been at home since he lost his job 7 months ago and just never goes out. He has had 4 jobs in the last 7 years and I think his difficulties relating to people have contributed to him losing his job so often. I just cope with it day to day, but stopping to list the difficulties is actually very depressing.

[cheapskatemum]

Sorry, OP, should have said that I think your idea for a website is a very good idea and I would most certainly use it!

[NorthernShores]

I find it hard that it doesn't feel as if dad isn't interested in me or what is important to me. I KNOW he loves me, but it doesn't feel like it a lot of time. Unless it is directly interesting to him he doesn't see the point.

I'd invited him to come to my daughters birthday treat at a wildlife park and he simply couldn't understand the point of coming as he wasn't interested.

It feels such hard work to always be translating, to always be the one to work around the issues. I'm pretty sure if I didn't contact him for a while/moved away he wouldn't initiate contact unless there was an "issue".

[Weeditandreap]

It feels such hard work to always be translating

Yes. Translating, interpreting, protecting, intercepting, explaining, appeasing.

EXHAUSTING

[notagiraffe]

where do I think you should go Amber? Well I think you could start a thread for aspies who get stressed by NT partners. Or stay here and be supportive. But the one time I have ever, ever let off steam about DH because this is the first time anyone has ever set something up that allows this, the one time in twenty years, on someone comes and tuts and judges. You know how it feels to be isolated and judged, so perhaps you can understand why I felt so let down by your swift condemnation of my letting off steam.

[violetshoes]

My FIL is diagnosed with aspergers, my DH has traits, as does my DS1. A website dedicated to the NT partners is a fantastic idea, thanks Joanna. Notagiraffe, please accept a hug from me. You (and all you other NT partners) have my support.

[LadyInDisguise]

amber could you explain to me though why it is OK for parents of children on the autistic spectrum to day it's very hard work but it's not OK for partners (or adults) to say it's hard work to live with someone on the autistic spectrum?

[LadyInDisguise]

I find it a real shame that as soon as someone comes on here to vent about their AS partner, they get a huge bollocking from people on the autistic spectrum.

The reason DH has self diagnosed with AS is because of one thread many years ago. The one and only thread where a MNeter talked at length about her then DH, how they met and what sort of problems they had. About how frustrated she was and how hard it was. One thread that was able to stand for a very long time wo the OP feeling like they had to defend themselves, explain and 'prove' that their DH was on the spectrum etc (as if you could 'prove' that one person has AS on the internet...).
I learnt a hell of a lot from that thread and it was the start of our journey with AS (both for DH and for dc2)

It is a real shame that the relationship board can not be as supportive as that thread was because if you go on the SN board and say 'I think my dc has AS. I am struggling with X and don't know what to do. I am at my wits end', no one will query your 'self diagnosis'. You will get support.
If you come on here and say 'I think my DH has AS and I am struggling with Y in our relationship.' then all hell brake loose with discussion of 'armchair diagnosis', that the guy is probably just EA, a bastard etc and 'how do you know that he has AS. Having AS doesn't mean you are a t**t'.
Actually I have even been told that my DH was an abusive twat because changing my behaviour helped when, as you say amber, for an AS/NT relationship to work, it is essential for the NT to know the triggers and take them into account (ie change their behaviour)...

I would really like to know why there is such a difference.

[NorthernShores]

I've been told aspects of my father's behaviour are abusive. And they really were. However if you look throught the lense of how he was understanding the situation it sort of makes sense.

Sadly for him I think when a particular instance is explained in detail he's horrified at the thought he could have upset anyone. He really does care (and this is what keeps me working at it). However, he then only really understands for that instance. He can't transfer that information to another instance.

He's been taught by my mother (divorced but stil lfriends) that when one of us goes around to visit, he really does need to turn the tv off, stop watching it intently and actually engage with us. Its taken years but he does it now and is lovely. He even instinctively makes a cup of tea, but its as if hes had to learn the rule.

He's amazingly hugh functioning, respected member of society, and would be upset at any mention of being of being on the spectrum. I think peopel these days with more understanding make it something people can work on together.

[Shootingatpigeons]

I think the problem with trying to establish supportive sights on Mumsnet is that there is no effective emotional moderation as there would be on say a charity website, and so no one is determining when a line has been crossed between being supportive and positive and being damaging. I have been on supportive sights on here where unwritten rules have worked well for a long time but then for whatever reason someone's comes along and unwittingly makes it more difficult for others, often they are unaware of how they have derailed the thread.

Of course those who have AS partners face challenges they will benefit from sharing with others, especially someone like amber who can give you insight. However you would not complain (seriously) that your partner with cerebral palsy wobbled or that your partner who had a mastectomy wasn't sexy. I am afraid that the "dead behind the eyes" comment strayed into that territory, because it is employing a popularly damaging stereotype that just isn't true. I am sad that notagiraffe cannot appreciate that those words were not appropriate and that there were other words that would convey the frustration of engaging emotionally with someone whose problems are most definitely not being dead behind the eyes, as demonstrated by the hurt you caused by using the term. It is like complaining your amputee partner can't walk.

[notagiraffe]

But shooting, I didn't even know that was a popular stereotype. We've only just found out what it is that was not quite right all these years. It's really thrown me. And I will feel free, in a supportive place to stray into that territory because this should be a safe place for those partners who need support, not a place where we have to mind our P&Qs in case someone who the thread isn't set up for might get offended.

TBH I'd hope that a partners' support thread is exactly the place where a person could admit that they didn't find someone as sexy without one breast, or that it drives them nuts, though they know it shouldn't, when their Parkinsonian partner shakes food all over the place. Support threads aren't places where you carefully select what PC version of how you feel might be socially appropriate. They are for dealing with how you really feel, warts and all, even if that feeling is fleeting and unPC.

It's a shame the OP hasn't been more present. I feel like I'm fighting for the right to have my own version of events acknowledged and sympathised with without any support or back up. I really don't care how anyone else feels about what shocking language I dared to use to express how it feels to be on the receiving end of Aspie interaction. How much you tut and hoist your bosoms is of no interest to me, A bit of respect and mature insight would be. But I doubt that's forthcoming any time soon.

[NorthernShores]

I think notagiraffe is spot on. A partner is (usually) in a situation where they love and care for the person they are with. That bit is read, however they need a safe space they can discuss how it feels to THEM without having to do all the tiptoeing and provisos they have to do irl or even with others who don't understand, in order to communicate and share.

I am close to my dad (who is single) and at times have a difficult relationship. I'm emotionally close to my mum and now I'm older understand a lot more about how tough she must have found the relationship.

I think its incredibly important that partners of those with disabilities have a safe space to say how difficult they may be finding issues, without being jumped on as being not caring! Of course they are caring - that's 95% of their life, but having a safe space to reflect on their own needs and feeling and being able to relate to others feeling similarly would be fab>

I've googled a lot for information about living with someone on the spectrum, and it usually is in the form of information for a parent. That's not the relationship I have with my dad at all, and not at all helpful! Mine is adult-adult.

[FeelingGrateful]

Shoot actually I am sure that some men will talk about how their partner having had a mastectomy has had a huge impact on their sex life and that they aren't physically attracted to them anymore.

Some time it has been a wobble as they just need time to adjust. Some time it's something they never get over with and they get divorced.

I really don't see anything wrong with that.

[Shootingatpigeons]

notagiraffe If you didn't realise it was a damaging stereotype and you do now, then why not apologise and move on? I absolutely agree that a thread like this should be somewhere you can come to learn, to find out how to cope with your challenges better. You should be welcoming Amber for the insight she gives not being antagonistic and hurtful.

But a public website is absolutely not the place to come on and discuss your ignorant and damaging negative feelings. For instance coming on a public website and sharing how having a mastectomy has made your partner less attractive to you when there will be many women struggling with their body image after the horrific trauma of Cancer will cause huge damage to others. The last thing they need is to read publicly that someone actually has issues (their own issues I might add) with their sexuality. And I would hope that were someone to go on a public website and do that that they would be met by challenges from supportive women who pointed out to them that these were their issues / conditioned responses and they need to handle them themselves, get counselling, whatever, because seeking validation in a public space is going to cause damage to others.

It seems to me what you actually want to do is somewhere to indulge your negative feelings, rather than get help with understanding the challenges and dealing with them. There are actually laws to stop you doing that in public space, recognising that those with disabilities, be they AD or having had Cancer, have enough on their plate without people indulging their negative prejudices and deserve that protection. If you want to be un PC do it somewhere that is not public and cannot harm others

[FeelingGrateful]

re being 'dead in the eye', I personally would probably not have said it like this but I know exactly what Northern is talking about. It's the lack of facial expression, incl expression in the eyes.
Now seen that, for NT, 802% of communication comes from body language and facial expression, dealing with someone with no or little facial expression is hard and it can feel like there is no one behind the eyes.

Northern is also right that when you have had no exposure to the AS world before, there is no way that you would know that that exact expression has been used in a derogative way.

[FeelingGrateful]

Shoot because this is a public forum, why is that some people can go and ask for some support, vent their feelings (eg because they are dealing with a disabled child and are really struggling with it) but others aren't? Whio tells who can vent their feelings and who can't? That some feelings are acceptable but others aren't?

Do you really think it's not hurtful when you are told that you are not 'allowed' to have these feelings? Do you think that it's not hurtful that you have to hide because you don't seem to muster the courage/the ability to 'get over' the idea your partner has a disability/illness/physical 'disfigurement'? That the partners then feel less than good and guilty because they haven't been able to adjust to that disability?

because personally I have gone though all that and instead of being told that 'I should be compassionate towards the disabled person and not share how awful I feel', I would have preferred to know that you can get over it, that it might just be an adjusting phase. And that I could do X or Y to help the process.

BTW insights like the ones of amber are good but will never be as good as the ones of the partner for the NT partner. It's all well and good to know that an aspie thinks in this way or that way. But if you still don't know what to do or how to respond. What works and what doesn't, it's not a lot of help. Or you end up reinventing the wheel again.

[Shootingatpigeons]

Shoot The same rules of consideration apply on any public forum, actually to any civilised space. Do not say things that will hurt others, and if the others are disabled it is enshrined by law. That is the line you shouldn't cross. End of. As I Say share your thoughts in a private forum, with friends but not where it can cause hurt. There is a huge difference between sharing your feelings and your experiences of what worked and indulging negative feelings, especially ignorant negative feelings, that hurt others. My best friend is bipolar, at times it has driven me to the end of my tether and my friends and I have coped with it through a mixture of black humour and shared exasperation and sometimes, even anger, you cannot help having negative feelings but it is important to recognise they are not appropriate and won't get anyone, anywhere and certainly shouldn't go public so that they can reinforce people's ignorance and prejudice. When I read someone describing bipolar behaviour in negative terms I will be the first to say that their behaviour is the result of illness, and sometimes the drugs used to treat it, and as such you cannot subject it to the same judgements of culpability and morality you would someone who was stable.

I am sure 60 years ago people who couldn't bear to be near black people felt they had genuine feelings they wished to share

Words that imply people with ASD are zombies are not appropriate, and I am absolutely sure that parents of ASD children would never say that, certainly none that I know

[FeelingGrateful]

Who said that aspies are zombies???

The problem with AS is that I know absolutely of no one that lives with a partner with AS or self diagnosed AS. So who on earth am I going to talk to? NT people who don't know and will give me the same insights that you can get on here ie he is being EA and LTB?
How is that going to help aspies and make people think they are more than 'zombies' as you say?

And do you know of a 'private forum' that will act as a support for NT partners in an AS marriage? Any counsellor that will know about AS? because as it happens there are very few counsellors specialized in AS/NT marriages and going to see someone who doesn't know about it just leads to disaster. And no forum I aware about (if anyome knows about one, maybe this is the time to say so!)
That's why the OP's proposal is a fantastic idea. because the need is there but there isn't anything available yet.

So people come on more general forums to talk about their issues because thanks to the sheer number of people on this site they are more likely to get the help they need but then get a bollocking because they aren't supposed to say it can be hard work

[notagiraffe]

Um, Shoot - who do you think I should be apologising to?

Explain to me who, on a support thread for NT partners of Aspies I should apologise to for saying how I felt at one particularly tense moment. If I agree that I made an inappropriate comment on this thread, i will apologise.

But I didn't. It is you who should apologise for treading on the toes of people who have come onto a new thread, people who have zero support in daily life, by barging in here and inappropriately policing legitimate feelings expressed in a legitimate place. Butt out. I'm being very pushy here (far more so than normal,) because the one thing that really makes me see red is 'one rule for us and another for everyone else^

Aspies need support, understanding, leeway given, accommodations made. But a partner isn't allowed to vent in a venting spot online, anonymously? Really?

[notagiraffe]

Thank you to those who have been supportive.

Thank you Skully and Feeling Grateful.

Some years ago, I was at a very low ebb when DH was made redundant, as the way he reacted was so utterly counterproductive. He absolutely ruined job interviews and refused to do anything to help improve his situation. About ten friends were made redundant at the same time and every single one of them found other work by reframing their ideas, within a year. Eight years on...

When I tried to chat to friends and family about my frustrations about two years ago (after six years of keeping family together emotionally and financially because DJh refused to downsize to a smaller house, or move to a different area or apply for jobs unless he ticked every single box in their prospectus etc etc) they said, even my mother said (!) LTB. Somehow, although at the time I didn't know he was aspie, I knew deep down that it wasn't his fault, but as others have said, NT people who don't know, just think Aspies are being utterly selfish and dogmatic and thoughtless of the feelings and needs of others.

I repeat, during difficult emotional discussions about things that really matter, DH often looks dead behind the eyes. This is a problem for me. It is very isolating when he cannot convey empathy either verbally or visually. I am allowed to say this here and I will. He has already isolated me from every close friendship I have ever had because it is such an ordeal for him when I go out, unless he has about a month's notice. Spontaneity, which comes naturally to me, has died. I display every single bloody symptom of that Cassandra list that Aston describes. And now, at last here is somewhere to get info and support. But not from you, please Shoot. Or from Athel. Not right now.