Advice about my partner

hi guys, been looking for a discussion like this for a long time... looks like medication is the only way for autistic people to cope with a family life, judging from your experiences... but I so don't want to take anything... I was coping with married life more or less ok when it was a quiet home ( badly wanted to separate, but couldn't live independantly) , but after kids were born - I'm ready to run away , it's a total nightmare! ( had 2 suicide attempts) ... sadly,  my NT husband refuses to consider letting me go, keeps talking about endless therapies until they "fix" me and make me into a dutiful wife and mother... I'm so stressed and tired , just want peace...just want them to carry on their noisy lives letting me be alone... 

hi i have just joined the community, so im new to this, but recently i have found out i am pregnant and imm scared this one is going to be taken away from us as well, because my fisrt was adopted, because my fiance has aspergus syndrome and i have a borderline peronality disorder, now we have social services back involved with us and they ask me all sorts of questions when im on my own abut my fiance which puts me in a awkward position, they ask me is he violent, is he controlling and things like that, now no matter how many times i say no hes not they still wont belive me, i really want this to work this time but with the amount of suppport for us that is out there to keep us as a family is none, i really want him to be a dad but is very diffivult when i have peole telling me that my child could be put on the at risk register because of my fiance, which hurts and upsets me alot, i really want to help him, have been with him for 7 years now but still find it difficult to help him, and when i ask for as much help as possible like the post before i get doors slammed in my face,

any advice please because i really want us to be a family

Hi

My partner is better on his medication too, if he stops it..we are in the doo dah quite quickly. Our modern lives are stressful, more so for someone who is AS.

My fella has taken his meds for a year now and they are still helping a great deal, so I am hopeful your chap should find it useful too. Definately give the counselling a go and don't be afraid to shop around if it doesn't feel right. I do feel a combination of coping strategies (talking therapy) and medication can be very useful.

Good practical ideas will be very useful to have and there are some useful books out there if you have time to read them. Try and find a support group locally if you can too. It helps for you to be able to talk and laugh about some of the things you are both experiencing.

I hope things continue to improve for you both and you find your way through.

Take care

Oatie

x

Dear Oatie,

Thank you for taking the time to reply to my post and I am so sorry for taking so long to reply.  I am so happy to read that things are much better for you all now.  That is great news.

Things here?  Well, my husband's GP has doubled his medication and as a result, he is a million times calmer and life in general feels much more relaxed however, I can't help feeling that the medication is just surpressing issues that need to be addressed.  But at the same time, I feel that if I persue avenues of help, people may think that I am wasting their time as things do appear to be much better at the moment.

I am also a little scared to completely relax in case this is just a temporary lull and things will get worse again.  Everything is so up in the air again but in a different way.

I live in Chipping Campden in the North Cotswolds.  Solihull is not a million miles from us in the whole scheme of things I guess.  I have spoken to a lady at the Gloucestershire branch of the NAS who emailed me a couple of councillor's contact info.  I have been emailing one lady who has been helpful so once we are able to find employment for my husband again and our finances are a little more stable, we may arrange to have some sessions with her.

Oatie, it is just so nice to not feel totally alone anymore.  To know that there is someone else out there who has a partner with Aspergers and children involved too, is so reassuring.  Although I have nothing at all against a lot of the services out there to help, it is a lot more geared up for children with the condition and their parents/carers.  Again this is FANTASTIC but I just wish there was more out there for people like our partners.

Thank you x

I am really sorry you are having such a tough time (hugs).

Since I last posted on this thread things have moved on considerable for the better.

We saw a man called Barry Thompson in Solihull..he's a trained counsellor who himself has Aspergers...and he was fantastic. The main issues my partner and I had we down to communication. It took a while but we have now worked out a system that really helps make our lives less stressful and means my other half can be a more responsive Dad (mainly as he's less stressed now).

I don't know where you are in the country or whether you can afford a few sessions with a specialist? It wasn't very expensive and after 2 sessions we were able to have a good basis to work though our issues as a couple.

Can you expand on what are the key issues you are having trouble with? Ours were memory, organisation which are all under the communication banner.

Once I had worked out the best way to explain things to my other half (and he'd stopped being overly defensive) we started to move forward. If he now needs to do something he immediately puts a reminder in his phone...this stops me having to repeat myself and him not feeling harrassed.

I give him a list of jobs needing doing, a time frame and I found that as long as I keep the list to 4 items or less he isn't overwhelmed and doesn't go all headless chicken on us. When that's done he has a new list.

Same with the kids, clear, precise instructions on what to do (even at first I had to tell my partner the exact words to use when speaking to the children). Once he realised it was working his confidence with the boys improved and he began managing better without help from me. If we mess up we apologise to the boys. We explained Dad will get it wrong at times but he loves them very much and will do it different next time.

On trips out we plan who will do what, when and where. If he's struggling with anything we have a code and we leave or find a quiet place. My partner cannot plan and will rush himself headlong into situations if I don't remind him..but it's LOADS better now and I can really see our future in a positive way.

Hang in there, try different methods, choose your time to talk when it's quiet, and if one way doesn't work look objectively on how it could be done better.

Ask me anything you like and if I can help I will try.

There is a future for you all, but the path is a bit bumpy and windy at first. It will be worth it as I expect you couldn't have a more loyal partner.

All my love

Oatie

x

Dear Oatie,

I have just today, joined this community as I just do not know where to turn.  I feel completely on my own... I came across your post and, after reading through it, am sat here in tears as I feel I have finally found someone who understands how I feel.

I too, have two children, two daughters aged 3 and 5.  My husband has finally (after eight long years of trying) been diagnosed with Aspergers/High-Functioning Autism - the psychiatrist couldn't 100% confirm which one as we couldn't establish exactly when my husband started to talk.  He also has learning disabilities and a speech problem.

My husband has many issues to face daily but parenting our daughters is incredibly hard for him... he too plummeted seriously after the birth of our first child and it has just got worse and worse for us all ever since.

The problem we are facing now is that after finally receiving a formal diagnoses, the psychiatrist has told us that our county PCT will not provide any further funding for support for people like my husband or families like ours.  They currently only provide a total of two assessments per month that five consultants must fight over... so my husband was incredibly lucky to receive one!  But after the assessment, there is nothing!  So we are back to square one really.  We now have a label for what is going on but STILL zero support!  I have tried to contact the health visitor for support but she was yet another person slamming a door in our faces.

Our girls are really struggling to cope with 'Daddy and his brain that is not very well'.  It breaks my heart to see my husband so desperately wanting to be a good Dad but he just doesn't know how and no matter what I do to try and help and support him, nothing appears to work.

I have often, though that life would be easier if we lived apart but my husband will not comprehend that it would just mean us living apart and not the end of our marriage.  I don't want to go either.  I want to find some support but I am totally sick of asking for help and all I get in return is doors slamming in my face.  I just can't do it all on my own anymore.  I feel so alone, so closed in, so helpless.

I really hope you don't have as hard a battle as me and my family are still having now Oatie.  Keep your chin up - as people always tell me.

Big hugs and thank you for sharing your story.  It is so reassuring to know there are other people like me out there. xx

Hi JDW

I completely agree with you, that's how it is for my partner. I know he genuinely cannot help it, there is no malice in him and that is why I think sometimes he would be happier with a more 'distant' relationship, where he had more space and peace.

When it was just the 2 of us we got on really well but the chaos of children sent him plummeting. He was incredibly shocked at how he reacted to being a Dad, as to be honest, he was always the one pushing for us to start a family. 

It's not so much that he doesn't put us first, more he just cannot judge what is an appropriate response/behaviour. He has become more and more stressed and withdrawn, so I feel I cannot meet his needs and I feel terribly sad at his discomfort.

We keep trying but he cannot tell my why things don't work for him or what he needs. I get the impression that most of the time he feels confused and unloved. The kids cry at his comments or more recently have started to use me as an interpreter..even when my partner is sitting there they will say 'can you ask Daddy to stop doing x,y,z' and 'please ask Dad if..'. He hasn't even noticed they are doing it. If I do broach these sensitive issues and voice the childrens feelings he will be in complete denial about any of it and make out everything's fine and I have 'imagined it'. 

Again I agree this isn't a deliberate attempt at undermining me but I would really appreciate a technique where I could get him to accept what I am saying. We are down to do a positive parenting course but I am worried that when the providers see how he interacts with the children there maybe some tricky moments.

One thing I have to finish on is I have no doubt in my mind just how dearly and utterly he loves us. We are his life, I make no bones about this at all. Sad thing is his whole life he has been 'beaten' with a big stick about his manner and now I fear he thinks myself and the children are beginning to do the same. It breaks my heart in two that I am not doing enough but I do have grave concerns about the children's perceptions of him and how it's effecting them. I don't know what to tell them (they are 5), we have no full ASD dx for my partner as yet but I am beginning to think it maybe better all round if I had that conversation with them sooner rather than later.

Thank you for your insight and I do agree with everything you've said. Do not think for one minute I do not appreciate, how utterly depressing, it all must be for my poor partner.

Kindest regards

Oatie

I have AS and my partner feels very much like you do. I understand that our partners must feel very lonely at times but I think it is important for people to understand that this is not aquired behaviour nor are we being intentionlally obnoxious. I have a son on the spectrum and my wife has a daughter who is more classically autistic. My wife seems to think because I am an adult it should be easy to adapt and change just because with age you do become more able to rationalise. I understand that to you as a NT person it is natural for you put your children first but to some of us it is not as easy as that, we can't switch it off and the more you try to be something your not the more unstable you become.....it's just not something we can sustain. I hope this helps but feel free to ask anything.

Thanks you for taking the trouble to reply, I had a really bad day on Friday and felt completely lost.

I am going to order the NVC book through our library if possible, if not I will buy it as looking at the reviews it does seem to me that it could prove helpful for us all. Thank you.

I tried hard today to get across what I actually needed from my partner and the day went much better because of it. We are both quite upset but managed to sort out some problems to make the weekend go better :) It took a lot of stress off me once I'd managed to explain to my OH that I desperately needed a break and in order to do this I needed him to x,y and z. I also managed to get him to accept a task that was causing me problems, without too much trouble (as long as he can remember what was discussed at a later point.)

Memory of conversations is a big issue for us and he is reluctant to make notes and relies on me constantly reminding him. This is very hardwork for me as I have my own issues with memory due to a Neuro problem. I simply cannot remember everything for 2 kids, myself and my partner anymore. So I am trying to find ways that he can take some responsibility for his own tasks etc. 

Has anyone else found a good workable method for getting their ASD partner to remember verbal conversations? 

Thanks for being there I feel so lonely at times...not many people understand the complexities of adult ASD/NT relationships and my poor son is having a rough time at present too ...somedays it feels like there isn't enough of me to go round.

Oatie

Hi Oatie

Sounds like things are tough just now especially when you are waiting to know for definite re your husband and son's diagnoses. This may be a bit of a wild card but I've recently been reading Non-Violent Communication by Marshall Rosenberg which I got on Amazon as I wanted to look at a new way of parenting my children including one who has high-functioning autism. It tackles problems in a whole different way and gets out of the punishment/reward cycle. It also makes you stand back and think about feelings and needs before taking action. I'm hoping it will help all my kids but especially the one with autism be more aware of emotions and their impact on themselves and others. It's early days yet but I certainly feel things are going better and last weekend when we were all tired and grumpy and I slipped back into 'if you don't do A, B is going to happen' it felt really unsatisfactory. My husband is up for going on a day training so we're both doing it together and I believe there's been some writing about using it with children with additional support needs. I hope you can all hold it together and that once you all know exactly where and who you are you can begin to shape a better life which helps all of you. Take care.