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

(214 Posts)
Joanna112 Mon 28-Oct-13 16:07:06

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 smile

Tink37 Tue 29-Oct-13 22:48:22

Hi You have answered my prayers with this post.
I believe my partner to be on the aspergers spectrum and after 10+ years of burying my head in the sand and trying to convince family and myself that 'everything's ok' and 'it's not really that bad' I am really struggling to hold it together.
Any advice from anyone, who has lived with a partner suffering and therefore making their own families suffer would be hugely welcomed.
I have started to see a counsellor myself recently as I just don't know how to deal with it/him anymore.
Thanks

Davsmum Wed 30-Oct-13 15:52:37

I think my partner is on the spectrum somewhere.
There is NO way he could ever be diagnosed because he would never, ever see anyone about it.
It has taken me a long time but I have started to (sort of) understand the way he is thinking and have been able to deal with conversations without them turning into arguments.
I would love him to be assessed in some way because it could be a personality disorder - I am no expert- but a lot of his traits do seem to be more aspergers.

Joanna112 Thu 31-Oct-13 16:39:44

Thanks to you both Tink and Davsmum

Tink, I completely understand how you feel and I really have faith that this new website will be able to help with finding a support network. I'd like people to be able to connect through the site using Meetup for example … I hope the counsellor you're seeing knows a lot about AS as counsellors who don't can sometimes do more harm than good, making out that you're complaining unnecessarily about things. You aren't. It IS different to being married to an NT man! Keep in touch and things will get clearer and better smile

Davsmum, I think there is still hope that your partner might want a diagnosis one day. I know I was lucky that my partner was willing to find out - but once he did, (he told me this) it explained a lot to him about his feelings growing up and that in itself was a huge relief. I have suggested that he and I do a video that could be downloaded from the site for a minimal cost which shows both of us talking to camera being completely honest about what it's like from each of our perspectives. Maybe this would encourage other partners on the spectrum to seek diagnosis - when they see how good it can be for them AND their relationships!

Here's hoping smile

Joanna

ElephantsEye Thu 31-Oct-13 18:33:35

I'd be interested in this too. I hope your DH's diagnosis has brought some relief to you both.

amberlight Thu 31-Oct-13 18:36:46

Please may I say that as a national adviser on autism, autistic myself, married to a wonderful autistic man and knowing several hundred other autistic people - male and female - many are wonderful partners. I'm saying so because otherwise some people reading threads like these in Relationships may end up thinking we're all bad partners of some kind. Some are of course. Same as some non-autistic people are. And it's certainly true that it takes a different approach to work out what's what. But honestly many of us are lovely and very caring people. I hope that your website for non-autistic partners is a success. Meantime, for anyone interested in working out what's what with autism, I'd recommend vimeo.com/52193530 which is such a good two minute intro to why many autistic people sometimes seem so unreasonable for no apparent cause - sensory and social overload that causes a literal electric shock to the brain which short-circuits the communication bits so we end up making no sense or getting 'stuck in a loop', bewildered by pain and confusion. Invisible and so hard to explain.

CrabbySmallerBottom Thu 31-Oct-13 18:54:58

amberlight I couldn't watch that video as I found it so sensorily overwhelming! grin That's exactly how I feel a lot of the time and always have. My DD has recently been diagnosed with AS and the more I think about it, the more I realise that I'm probably on or very near the spectrum too. I've always had a hypersensitivity to certain sounds and visual stuff; I hadn't realised until recently that this can be connected with autism.

Joanna112 Thu 31-Oct-13 19:15:34

Thank you EE, AL and CSB for taking part in this thread - and for the vimeo link amberlight. I really hope the site will be able to show life from the AS partners point of view. I am in touch with a published author who is very happy for me to put links to his Youtube clips describing how he feels in social situations etc. It's really helpful in understanding things from the AS perspective.

One of the reasons I am creating this website is because I found so many threads and discussions on other sites were really negative. It definitely has it's challenges, for sure, as all relationships do, but there are actually some real positives to life with an AS partner. My plan is to put 'our' story out there on the site to show the good and bad - and for my husband to do the same! After all, I may be NT but I can certainly be a challenge ;)

lavenderpekins Thu 31-Oct-13 20:23:40

I would be very intetested joanna112 feeling desperate living with my almost certainly aspergers dh! I hadn't thought before that my relationship could be the reason i've lost so much confidence and i've never felt to lonely recently :-(
Any advice greatly received!

lavenderpekins Thu 31-Oct-13 20:26:59

I've never felt so lonely

Joanna112 Thu 31-Oct-13 22:39:49

Hey lavenderperkins. You are NOT alone smile There are thousands of us out here with you. AS was only recognised/named as a condition on the autism spectrum in 1994 so in the grand scheme of life, it's still relatively new and so lots is still being learned as we go along.

The more I read up about it the more I recognise how far away I am from the person I used to be, the character I was, when I first came into this relationship. I don't want others reading this to think I'm just passing the buck here and blaming my husband for difficulties in our marriage. I'm not. But the fact is - and this comes directly from my husband - HE is really quite happy with our marriage the way it is! He doesn't need the social interaction I've always enjoyed and thrived upon, he can happily spend four or five hours on the computer at the weekend on a lovely sunny day and not want to take time out for a half hour walk on the moor. He doesn't need romance. He's not very interested in people. He talks about his work at every opportunity and rarely asks people about their lives/work/family etc. But then, he has an amazing memory for facts he finds interesting - he knows lots of 'stuff'! He is never moody. He is always on time - if he says he will be somewhere at a certain time, he'll be there. He is generous. I have no idea what his sense of humour is (if indeed he has one!).

For most of us, if we are unaware of what AS is or that our partner has it, our focus, when things go wrong won't be on trying to diagnose a condition we know nothing about on the autism spectrum. We'll be way too busy trying to make the relationship work! In doing so, it's likely we'll compromise more and more on things we once recognised as being the things that make a partnership a happy and healthy one - and the things that make us happy. Over time, the habit of putting our own health and happiness last in an effort to maintain the relationship means that our physical and mental health suffers.

Thank you for all the comments here. I promise to take account of all that's been written and maybe, nearer the time of the site going live, when it's in 'draft' mode, I could ask anyone interested to look at it and give honest feedback?

Joanna

notagiraffe Thu 31-Oct-13 23:07:11

Wow. I'd love to know a bit more. Sorry if this is long but I've been churning all this stuff in my head for the past few weeks, and this seems like a good place for it to come out.

We have often thought DS1 was Aspergic. His nickname, given to him by his classmates, is Sheldon. (In fact, I think TBBT's popularity helped him get any mates at all. He was shunned as weird for the first few years at primary.) He had some very AS typical tendencies as a small child (zero interest in his contemporaries, buttonholed adults and fired questions at them, not very cuddly, very fixated on certain things, almost pathological hatred of change.)

So we were very surprised when DS2's SEN told us they think he has Aspergers. It had never occurred to us. Different set of qualities from his brother. DS1 is Sheldon's mini-me. DS2 is utterly different. But he had become increasingly withdrawn and socially inept (having been fine as a very small child - in fact, very outgoing.)

So DH looked up AS online and came down stairs and said: 'it was like someone had described me.' Then F-I-L asked S-I-L (who is an SEN) if she knew anything about AS without mentioning why he was interested, and she said, 'Well that's what 9my) DH has.' So she'd diagnosed her brother in her mind, but told none of us.

So many things that have frustrated me over the years actually now make sense. The chronic, orderly hoarding of chuffing magazines (and the disorderly hoarding of everything else. He can't let go of anything. The absolute inability to deal with change of any kind. The inability to be spontaneous. The social inappropriateness and sheer lack of engagement with others (notably, dismissing a social group of over 50 other men of his age in our village, because 'none of them was interesting' - what? All 50 of them bored him in one evening?)

I've become lonely. I used to be so outgoing but social invites just tailed off, and I got bitter, because I'd meet new people, get on so well with them, get invited over with DH, and then suddenly the invites would dry up. Still keen to meet for coffee 1-2-1, but never included in those easy going BBQs and sunday lunches or dinner parties, and I somehow knew it was because of DH but felt awful thinking that because it seemed like I blamed him. But I got so frustrated at having no friends. Guess which one of us ended up on ADs.

And he eats up so much emotional energy. It took me 10 years to persuade him to try for Dc, even though he knew he wanted DC. Definitely. Just wasn't ever ready for the change in circumstance. Same with moving house. He hated London (I loved it) he wanted to move to country side, but even after a shooting in our street, I actually had to go behind his back and rent a house because we'd have lost out on our house sale due to his refusal to make the move. Same with foreign holidays. he refuses to go - I wouldn't force him if he didn't want to - he wants to, he just refuses to want one this year (because it involves change) I feel like I've turned into someone I'm not, someone who has had to issue pretty aggressive ultimatums (we try for Dc or I leave; we move house together or DC and I move without you) simply to get him to agree to make changes that he is entirely in favour of.

Despite being absolutely brilliant in his field, he ended up sidelined and hasn't worked in years because he is in a profession that requires social interaction and he just wasn't up to it.

We're lucky in that he does have lots of redeeming qualities. He's very reliable. He is very funny (to me. We share an odd sense of humour. Not everyone gets it.) He tries to be kind. He tries hard, generally. He's not interested in straying. He already has one. Why on earth would he need another one? grin

But like you OP, I get so lonely. He doesn't really talk with me, or listen properly. He doesn't connect in conversation. Having said that, since he read up on AS and discovered his sister thinks he has it, he's been much more understanding of my frustrations at his lack of response in conversation. And I've felt much kinder towards his inability to be friendly or to handle change.

Phew. Sorry. Been rolling round my head because I'm so worried for DS2 (and tbh DS1, who is almost certainly on the spectrum, but unlike DS2, doesn't mind so much about friendships and fitting in.) But suddenly finding out that DH is likely to be Aspergic too has made me revisit so many problems we've had in the light of that.

amberlight Fri 01-Nov-13 06:35:54

If it helps for background info for anyone reading, autism/aspergers is a permanent brain design difference. The brain is wired for intense detail...but does not have the bit that sees people and knows how to interpret them. We can't see eye contact or body language or faces properly. We can't hear tone of voice. And if we are in a busy place, our brains hear see and sense so much detail that it gives us an electric shock through the brain wiring. It has strong links to forms of epilepsy. It is why we can't manage big crowds...intense exhaustion happens and our brain shuts down. It's a very real disability. If friends are not willing to make it possible for us to be at an event in a doable way, it's a sadness. We end up very alone but are rubbish at explaining our brains. All of this is a generalisation as there are individual differences. But no amount of counselling can make us see and hear the things others can. We are literally blind and deaf to social clues, and need quiet and clear words and downtime.

PurpleJellyDisc Fri 01-Nov-13 06:43:30

Watching

LittleRobots Fri 01-Nov-13 07:06:08

I'm interested on the side lines. My parents are divorced ( but my dad still doesn't recognise this really 20 years on . .) I'm pretty sure my dad is on the spectrum but obviously of an age before it was identifiable.

He's lovely, intelligent but mostly impossible in a relationship ( I can really see why my mum struggled for so long) due to some of his traits. I have many times nearly gone no contact until I repeat that its his wiring and the next time I see him he's lovely.

I know I'm not target audience but just to say I know my mum would have found such support invaluable at the time. She just kept struggling against the same issues until she felt she'd failed and gate up.

Nottalotta Fri 01-Nov-13 07:13:49

Thank you for this thread. notagiraffe you have just described my DH, and joanna the things you say ring so many bells with me.

I have long since though that DH had 'something' but ws really not sure what or where to start. I am not at all sure how to broach this subject with him though. I don't think he will want to consider it for himself.

Can anyone recommend where to look for further info?

amberlight Fri 01-Nov-13 11:59:46

The National Autistic Society is a good source of info about autism and easy to google. There are also a ton of tests on the Autism Research Centre website at www.autismresearchcentre.com/arc_tests but none of those are diagnoses, of course. They are the tests that the diagnostic professionals use. Either people go to a GP and ask for a diagnostic referral and wait probably two years in many places...or they pay for a private consultation with a Clinical Psychologist or similar who specialises in autism.
It needs to have been present through all of life, so a family member has to confirm what they were like as young children. It also has to be severe enough to impact on life in some fairly dramatic way to get a diagnosis.
It's extreme social clumsiness because of not being able to see the social non-verbal signalling....and taking language really literally....and not having a lot of general common sense about planning for things without huge detail (another bit of the brain that doesn't work properly) and not being able to hear in a crowd....and not being able to make good use of eye contact....and a desperate need for routine....and for 8 out of 10 of us, big sensory sensitivities that make life painful and exhausting.
Many of us are also clumsy.
And we find understanding social language really really difficult. A genuine language processing difficulty with the brain wiring.
But we're amazing at technical detail recall and responsible for design and safety of just about everything around you. Ten times fewer errors on specialist stuff than other people make, for example. So planes stay in the air. Airbags in cars work first time every time. Medical procedures we design work exactly as they are supposed to, etc. Very very useful people to have on the planet, but rubbish for big social groups.

It's nothing to do with being nasty to people, lacking the ability to learn empathy, having a mental health condition or having a learning disability. Some autistic people might also have those things, (same as anyone else might have them) but it's nothing to do with the actual autism. Hope that helps anyone pondering this.

beammehome Fri 01-Nov-13 12:46:40

Thank you for this. I'm also very much interested, particularly if there are people out there whose OH is a female with AS.

It is a very cold and lonely existence, not at all like any relationship I ever imagined myself being in. All corners and edges, no warmth or comfort. Unfortunately, my DP thinks that explaining about AS and how it affects her somehow makes my concerns or needs disappear. Well, more that it makes them redundant and silly. Of course, I now know much more about it, and do try to understand, and adjust my own expectations and behaviour, but I feel like I'm losing something somewhere.

So yes, it would be good to connect with other people who are sharing some of the same experiences.

Joanna112 Fri 01-Nov-13 13:42:19

I have so much in common with your post notagiraffe.

Notalotta … I'm afraid, before I'd even heard of AS, when my DH and I were having the same (practically word for word) conversations and arguments for years on end, I became really unkind, name calling etc. I was ashamed of myself but was so frustrated and exhausted. I've always been told I was a good communicator but I felt completely hopeless and helpless. I thought I'd clearly explained exactly what the problem was and how to resolve it - so how did it keep happening again and again. He told me I was mad. I started to believe him!

The way I finally got him to talk about seeing someone about AS was this: I ordered a book on Amazon called 'Solutions for Adults with Aspergers Syndrome'. Whilst reading it, I kept leaving it lying around the house, in the kitchen, on the coffee table, on the stairs. Subtle hey? smile He never once picked it up. A month later when he was on the computer late at night I went down to his study, sat in the doorway and started to read it aloud. He yelled at me to get out. I told him I was going to continue reading - either there, on the floor in his office - OR, we could go upstairs, have a cup of tea and I'd read it to him on the sofa. "Alright!" he yelled. He stormed upstairs. I followed. We sat on the sofa and, after the first chapter he quietly asked me if he could read it himself.

The following morning he told me he'd sat up half the night reading the book. I asked him how he felt. Overwhelmed. Why? Because, he said, he recognised himself in the book. He also recognised his father and his son (from his first marriage). That was the starting point of seeking and a referral through our GP. As I've said before, the diagnosis saved our marriage. The biggest reason I want to get this website up and running is to help people in that crucial time in a relationship - between awareness and diagnosis. Knowing and understanding makes all the difference. It doesn't make the relationship perfect - but then what relationship is? It's also no guarantee that the relationship will work - but then when do you ever get that?

I love that we get the AS view here too. It puts things in perspective when reading about all the positives that an AS partner can bring to a relationship - and to the world generally!

HansieMom Fri 01-Nov-13 13:45:53

"All corners and edges, with no warmth or comfort".

What a descriptive sentence.

notagiraffe Fri 01-Nov-13 13:49:55

amberlight, thanks for the reminder that it is different, and permanent, not an attitude or choice. It's crucial to remember this. I must say it has helped me enormously to realise DH is on the spectrum rather than just disengaged.

He really REALLY can't read between the lines of anything I say. He takes stuff literally and at face value. As he is highly intelligent and also very artistic, it never occurred to me he was aspergic. I thought for 18 years he just didn't rate me or anyone else highly enough to engage emotionally. He connects very much on an intellectual level and if you can't, or you're tired and just want to relax mentally, it can be quite tiring.

I did the online test myself this morning. Have sometimes wondered if I am too, as I don't connect socially with people in quite neurotypical ways. But my score was very low indeed. However my dad is definitely Aspie and my mum has traits. So spending childhood and most of adult life with Aspergic people feels normal to me and some traits rubbed off. I sort of prefer being in close proximity with Aspergic people in some ways. It gives you lots of breathing space. I wasn't 'noticed' as a child much by my parents and that had real upsides to it. You get to be yourself. No one tries to mould you into their way of being. I love the offbeat way my dad and husband think. Really love it. Just get tired of there never being any emotional recognition and miss the social hub I used to have.

I keep thinking over times we've had rows and I have to leave the room. he comes in later with a cup of tea as a peace offering or just to ask a totally unrelated question, and looks utterly bewildered by my emotions. He hasn't a clue what is upsetting about his behaviour. He looks so lost. Now I realise, he just doesn't know. Can't know. That actually helps me enormously.

amberlight Fri 01-Nov-13 15:56:49

Positives? Us aspies are also well known for being extraordinary social justice seekers. Honest, diligent, reliable, able to keep going during emotional moments when others are overwhelmed with emotions (though our emotional response to trauma catches up with us later on...sometimes days, weeks or months later). Again, generalisations as everyone is a little different.
Many of my closest friends are autistic. All of my family is. We have a fantastic time together. Warm, close, loving, caring - because we know how not to 'trigger' the pain and fear in one another. Hugs may have to be negotiated because of intense sensory pain from skin contact, for example. Unexpected contact gives us an electric-shock feeling. Really scary. But learning how to hug in a non-pain way is fab. How do we know whether each other is sad or happy? Easy - we say so. How do we know what we need from someone else? Easy - we say so. If we can't speak, we write - or use pictures/cards/text/emails instead. So, if it's all aspies together - great. If it's all non-aspies together, great. If it's a non-aspie and an aspie trying to understand one another, it's like pairing up a cat and a dog. We may misread one another and do things that upset the other person without meaning to. Learning how to navigate life together becomes an art and a science. Not everyone chooses to, and of course each relationship has to stand or fall on its own merits. But aspies are generally fantastic people to be with, once people know how, and once we learn how to be sensitive to their own needs.
I do a lot of training for professionals and teams in the country. We get them to do a really good exercise; find a friend you really like. Sit facing away from one another so you can't see their face or body language. Talk about something using a totally flat tone of voice - no emotional expression at all. See how long you can manage it for before you are bored silly/stressed out. Most people give up after about a minute. That's our experience all the time....the whole emotional content is always missing from what we hear and see.

notagiraffe Fri 01-Nov-13 18:03:31

The eye contact thing used to bug me enormously. This morning I'm afraid I wound him up. I tried to get him to make eye contact while we were chatting. In the end he got grumpy and just said 'Stop it.' But I forget how normal it is to have eye contact because we never do.
DS2 is the same. sad His eyes can't make contact during conversation though he is capable of gazing at people in a totally melting way when he isn't talking with them.

Again, I had no idea why. I used to try and force him to make eye contact as lack of it just comes over as so shifty. Now? Dunno... What should I do?

Amber, would you explain why eye contact is difficult and what you prefer when speaking with a non-aspie person?

amberlight Fri 01-Nov-13 20:27:47

Can do, yes. When a non-autistic person looks at someone's eyes, the first bit of the brain it uses is the old 'predator spotting' bit. It's automatic and scans the face in front of it to see if it's a sabre tooth tiger about to eat us. If so, it presses the big red panic button: Run!!!! No? Then it starts asking the rest of the brain for clues; who is this, are they a friend? What do I know about them? What is their emotional state? Eye signals happen so fast that only the auto-decoding bit of the brain can decode what those signals mean. Your brain is looking for smiles, eyebrow raises - all sorts. Totally automatic. It then responds with all its own signals and expressions and voice tones etc. Fantastic!

In ours, we look at someone's eyes, and our brain asks the old 'predator-spotting bit', and that bit presses the big red panic button and won't let go. To our brains, we're looking into the eyes of a top predator who is about to kill us. There's no wiring to the people-decoding bit because we don't have one. So the signal gets stuck in the old animal-instinct bit. It's the same with staring a horse or deer in the eyes - they will panic and run.

In a very real sense, it's like making eye contact with someone who is Blind. We can't see you. All we see is an outline - your hair, your general body shape. Eye contact is intensely frightening/overwhelming and gets us nowhere. That bit is genuinely broken. Our eyes are meant for looking for patterns in data, pictures, spotting genuine predators, etc. Not people.

That's the why of it. Aspies will sit next to one another out of respect for that intense fear if we look at each others' eyes. People thought we were just rude and shifty. Nope. Just don't have properly working eyesight. Again it's a generalisation since some can manage some eye contact and others absolutely can't. Depends how much brain wiring they got born with.

racingheart Fri 01-Nov-13 20:39:40

Thanks Amber. That's really helpful.

I sort of get what you mean. I have dyspraxia. I can't cross roads. Non-dyspraxic people tell me they see roads and cars and can judge whether it's safe to cross. I have no idea. If there is any traffic movement anywhere, near or far away I have no idea whether we can cross. I can manage it if I focus very hard indeed and the traffic is so far away that it looks tiny but otherwise, the red panic button, as you describe it, goes on and stays on.

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