Delyth

Hi My husband and I went to couples counselling just as we were going through the process of him getting a diagnosis (we live in East London, where are you?). Non of the counsellors had any experience of AS. This made the counselling experience very difficult and stressful for us as a couple - their expectations were for him to be able to respond as a non-AS and they were a little confused by his difficulties and unable to offer the practical support that he/we needed. I was concerned that they would do more damage than good, partly because his failure to meet their NS expectations reinforced an already low self esteem that he held. After each session I felt the need to re-balance all that had been said and put it into an autism context. This was really challenging and did not help our relationship especially as I don't know enough about AS in the first place! But... I gained a lot out of the experience as an individual - being able to have the time and space to express my emotions and have immediate and instinctive understanding was invaluable and gave me the strength to keep going! Good luck deciding whether or not to go... and if you wish to talk, do come to the self help group in East London if you can. Details - www.whydoesmypartner.co.uk (next date is Jan 9th). Would be lovely to meet up one day... Best wishes Delyth PS. Have just read Barrie Thompson's book "Counselling for Asperger Couples" and my first impressions are that it seems really useful. Maybe take this along with you if you decide to go?

Sorry I haven't replied... have been away enjoying the festive season in the mountains in Wales and visiting family... back in grey grey London now though... Thanks for your warm comments and words of encouragement... it's lovely to know that others can appreciate the experience too as most of my friends have no experience of autism and find it difficult to relate to things that I sometimes try and share. Happy New Year to all... Delyth

Hi all... Just like to share some exciting news... My husband (AS) has always found it very difficult, impossible even, to engage in conversations about emotions, mine or his - he always avoids them. In the past, when I have attempted to share on this level he has become immediately anxious and silent (I used to interpret this, long ago before I knew about AS, as him listening). Needless to say, this response - or lack of response - then made me withdraw, feeling confused, rejected and unloved, and often angry and frustrated by this apparent lack of caring. I would desperately wish that I had not even started the conversation and making myself vulnerable. Our relationship suffers from a lack of intimacy in this respect and it has been difficult to build our relationship into one of trust and sharing, something that we have been trying to achieve for a long time. Anyhow, yesterday we were for the first time able to have a spontaneous good, in depth, adult, lengthy and healthy conversation involving emotions. We reflected back on the possible reasons why this had happened and we realised that when my husband went silent, I was able to recognise this and say to him, calmly without feeling angry, 'you have gone silent and this is not helping me'. He was then able to drag himself away from the dreadful grip of anxiety and actively participate in a conversation that allowed us to explore my feelings and eventually come to a resolution. It was a truly beautiful moment for us and our relationship... Happy Christmas to all on this forum and wishing you some beautiful moments too in your families. Delyth

Hello Sun Nice to meet you... I am in London and I feel very isolated at times too. Not sure if it is the place though, or just the lack of other spouses to share with (we have no children on the spectrum) in my case... so this forum is a good place to find some friends. Best wishes Delyth

Thanks Kathryn - appreciate your help. Delyth

Hi All Went to the NAS South East members day on Saturday and it was surprising but refreshing to meet a couple of other spouses there... we were able to briefly acknowledge some of the difficulties we are experiencing... it felt great not to be the only one for a change! It's been so difficult finding other spouses... where are they all??!! Anyhow, the support group that I am in the process of creating meets again this week in East London E2, Friday 1pm-3pm. Would be lovely to meet other spouses who are dealing with challenges in their relationship and would like to get together to help each other... See http://www.whydoesmypartner.co.uk for details on how to find it or pm me. Best wishes Delyth (Post edited by moderator to create direct link.)

Thanks for this suggestion - I shall have a look. It covers a lot of things my husband needs some support with. Best wishes Delyth

Thanks very much everyone... I did think that maybe there aren't many resources... I will certainly follow up your good suggestions - we were unaware of the Aspergers united website - thanks for the info jb. Kathryn - I think it's a good idea for us to explore the BBC resource too. That should keep us busy this week! I also had a suggestion from a local parent group to contact Tony Attwood and see what he has.... oh yes... now I am thinking.... maybe Donna Williams has something too.... You've been very helpful... Thanks again Delyth

Hi It might help your wife if she knows that the change that she is hoping for is possible - that having AS does not mean being unable to change. It is a developmental disorder and people with AS grow and learn new skills too if they so choose, though the change might be more difficult to achieve. My husband has AS and is learning new ways to think and communicate - ways that are more 'relationship friendly', so my experience is that it is possible, if not easy. I haven't given up hope yet! My husband also often percieves comments as criticisms of him and it does make conversation tricky at times and adds to his defensiveness. I don't know why he does this, maybe low self esteem? maybe still having a developing sense of 'self and other' so he still sees the world as if he is the cause of everything, the centre of everything? Anyhow, I have learned that he does this and now will usually ask how he has understood any of my comments before our conversation progresses to make sure we understand each other correctly and don't get side tracked. He is able to repeat back to me what he heard (or even read) me say and often it is 'twisted in some way' to fit into his preconceived idea. I then reword things to make my point clearer or stress things differently. So checking what is heard is a strategy that helps our communication. And I never assume that what is said, is what is received. These strategies have helped us communicate better. I think it's great that you have posted and are looking for solutions and it's wonderful that you have recognised and acknowledged something that may be causing your wife problems too. Good luck Delyth

Hmmmmm.... no replies..... I think this is unusual for this forum? Does this mean: There are no resources? No one understands my question? No one else has this diffculty? No one has resolved this difficulty? No one is talking to me?!! No one wants a reciprocal conversation??!!! Any thoughts or comments appreciated.... Delyth

Hi Beccy Firstly, it sounds like you are dealing with a lot of challenges in your family... make sure you look after yourself! Your husband does seem from your description as though he may be on the spectrum and I understand why this is important for you to know. My husband was AS diagnosed a couple of years ago - he agreed to explore this avenue after at least a year of us talking about it following family life (we have three NS children) disintegrating. Initially he was terrified of the thought of having 'something wrong with him' and it was very very difficult for him to actually 'see' that some of his behaviour and/or comments were causing problems for those around him, even though he was willing to try and 'see'. Given time, love and support and continual reassurance that he was still loved and valued even if there was 'something wrong' he eventually agreed to explore getting a diagnosis. We decided that it was the best course of action for our family by writing lists of pro's and con's and the pro's far outweighed the con's (my husband finds it helpful to understand and fully appreciate things if they are written down or made into some kind of chart otherwise he can get caught in the detail and forget all the other bits that make the whole picture). Having a diagnosis has saved our marriage - I can now understand why he behaves the way he does and we are learning how to communicate well. Without the diagnosis, I don't think I would ever have known what his needs are as he can not easily communicate them and I would never have been able to adapt my style of communication. He is also learning how to communicate better to all of us. I have read of other spouses whose husbands are not as cooperative as mine, but were experiencing enormous difficulties and found that ignoring the issues didn't work, so instead they treated life 'as if' their husband had a diagnosis and found things improved. So, no easy answers or quick fixes... you know your husband and family best and also what you need too. Good luck... keep talking! Delyth

Hi all My husband is trying to understand all about "conversation"- the different styles, content, the reasons for having one etc., and is trying to learn how to engage in general reciprocal conversation. Just wondered if anyone knows of any helpful resources that might be appropriate for an adult. Thanks Delyth

Well done - it really is a big achievement to get through the whole process. Look after yourself Best wishes Delyth

Hi I am sorry to hear about your daughter's behaviour and fully understand why you are concerned. Hugs to you and well done for trying to address it. I think it is a matter of urgency that this behaviour is stopped. Can I ask how you know about it? If the teacher has told you then please ask the school what they are doing to prevent it happening. If the teacher does not know, I would inform her/him immediately. I would also inform my GP immediately too and ask for specific guidance on how to stop this behaviour. It might be helpful for people if you keep a record of all incidents of this type that you are aware of. You are right - it is putting your daughter at risk and needs to be stopped. Best wishes Delyth

Hi Welcome to the forum... sorry I haven't got much time to reply to all your writing, but just to let you know that my husband was diagnosed AS a couple of years ago at the age of 44yrs. This diagnosis saved our marriage as it gave both of us a framework, the same framework, to understand his 'odd' behaviour and communication difficulties. With this understanding we have been able to re establish a good marriage. The first thing I found helpful, was to read all the books, especially the few aimed specifically at relationships. Not all will be relevant but you will find the bits that are helpful for you. Ashley Stanford's book 'Asperger Syndrome and long term relationships' was particularly helpful. And, most importantly, look after yourself. I have organised a support group (it's free!) specifically for spouses trying to maintain a good relationship - it's in London but all are welcome. The details are on: www.whydoesmypartner.co.uk Do come in December if you can! Best wishes Delyth

Hi My partner is an 'Aspie parent' - our children are 19yrs, 9yrs and 7yrs. He struggles to fulfil the parent role in many ways and it is a serious concern for us if ever I should not be able to look after the children, but I do not think this is because of AS in and of itself, but possibly because of the way he has adapted to having AS and NOT adapted to being a father. You mention two aspects of AS - the routines and keeping to rules. For my partner, his 'rigidity' in these matters make for quite a difficult and stifling family life at times, so he works very hard to try and NOT let his need to keep routines become more important than meeting the ever changing needs of those around him as they grow and develop. I think in general, some element of routine and predictability is good for children if the routine serves their current needs, but if not, then the routine can get in the way of life. Some routines help, and some hinder. It's making these judgements that my partner finds difficult. My partner is not good at sticking to house rules - so our house rule, for example, of 'shoes off inside please' is often ignored by him. Best wishes Delyth

Hi all Just a reminder for partners and spouses that the support group meets tomorrow pm if you are interested in getting together for a cuppa and a chat. Not sure if I can post the details here??? but do email if you are interested. Would be lovely to meet some more spouses! Best Wishes Delyth

Hi My husband was diagnosed at the NAS Lorna Wing Centre by Professor Gould. We obtained funding for the diagnosis through our local authority learning disability team, though this took a few months to obtain. I think they do see clients privately too though. I attended with my husband and we supplied a statement from his mother about his early development and childhood, though I don't think this parent statement was essential for a diagnosis, but it helped provide a fuller picture. Good luck Delyth

Hi My husband has an AS diagnosis and has recently received funding through the NHS for counselling with a professional qualified in AS. It was quite a lengthy process to obtain funding partly because there is no one qualified in our area - East London. We went through our GP and learning disabilities team and also used the NAS information as a guide. You can also search the British Association for Counselling register and I think there is another psychology register of practitioners that might be useful for your husband. Good luck in finding someone in your area. Best wishes Delyth

Hi Hedders Our borough has a Parents Advice Centre - does your local authority have something similar? I think you should seek some professional advice from outside the school if the SENCO and teacher's comments are not reassuring for you. Best wishes Delyth

My husband was wrongly referred to a non-specialist when he was first seeking a diagnosis too. After this initial mistake, he was re-referred to the NAS communication centre, Bromley, and the consultant there was able to collect information from myself and my husband's mother as well as from my husband himself and diagnose accurately. The experienced consultant was able to probe further than taking an initial answer to questions and could re-word things to make sure she was getting an accurate response because she understands that people with AS respond to questions very literally which can often lead to misunderstandings. (eg. The non-experienced consultant asked my husband if he uses the underground when travelling around London.(?!) My husband answered "Yes" but, in truth, the answer should be "Yes, once and I was very stressed by the experience and avoid it". It is very important that you get a proper assessment from an experienced clinician if this is what you and your husband want. Having the diagnosis of AS saved our marriage as we could understand my husband's behaviour for what it really was rather than thinking it was 'bad behaviour' that he chose not to change. It has helped my husband understand himself much better, which is the first step towards having a good relationship with others. I would also send a word of caution regarding having any marriage counselling before you have an assessment - IF your partner is AS and the counsellors have no experience of AS it could be a disaster for your marriage. Non AS counselling is very different to counselling for people with AS. Have you read any of Maxine Aston's books, or Tony Attwood's? If not, I would recommend them. We found them very useful. I have set up a support group for partners that you are welcome to come to too if you are in London and would like to talk. See: www.whydoesmypartner.co.uk for details or email me. Look after yourself - you are dealing with a lot of challenges and have a very complicated life. Hugs to you. Delyth

Hi Sally My youngest (not AS, but traits) licked everything when he was little, including shoes and other revolting things. I think it stopped around school age and now (7yrs) he generally sniffs things instead - though sometimes with new things, still can't resist a little lick. I think it is his way of understanding the world - combining the visual with taste senses. We think he will be a great perfumer or chef when he grows up! Best wishes Delyth

I used the banana skin remedy with my eldest daughter's verruca - worked a treat! Good luck Delyth

Hi Lynne Sounds like you are having a tough time at the moment - dealing with all this is exhausting. Can you make sure you have some time for yourself each day? I think rewarding positive behaviour is a good way to try to stop negative behaviour - so every ten minutes (or whatever frequency is appropriate for your son) give praise and rewards (whatever your son finds rewarding) for doing the right thing - whatever it might be - and bringing every ones attention to your son behaving well, if attention is what he likes. Focus intensively on the good behaviour for a few days, whilst dealing with the hitting with as little fuss as possible until it stops. I think inappropriate behaviour develops and continues because it is being rewarded in some way, so your son has learned to hit as he is finding something about the behaviour rewarding. Can you figure out what it might be? Giving him an appropriate cushion or place to thump might also help him until he can express his frustration in a more acceptable way. Hope things get better soon Best wishes Delyth

Hi It's a really frustrating process.... my husband experienced similar problems. But with polite, persistent follow up enquiries and meetings and emails he eventually got his diagnosis and funding for some counselling. He/we kept sane (just!) throughout the process by: keeping a record of the process; keeping a close eye on when responses should come and chasing them up quickly when they didn't; estimating that it would take at least 5 years, so if it was shorter he could be pleased (!); talking to me and asking advice - sharing the frustrations; asking for help from the professionals - what do they think would be the best way forward; contacting PALS for advice; contacting NAS; yes, being afraid to be persistent but being persistent anyway; deep breathing... Do you have someone who you can talk to and share your frustrations with? Is there an advocacy service somewhere (NAS?) perhaps if you feel unable to deal with all the bureaucracy yourself? Good luck - take one step at a time. Delyth