Delyth

Hi Big hugs to you... sounds like you've had quite a rough time... I have a partner with AS and have organised a support group in East London. If you are in or around London do pop in - we are meeting this Friday or again on the 11th Feb. Details: www.whydoesmypartner.co.uk I think there is also another group in the north of England which I can find the details for if you are in that part of the world. If you can't get to a support group, I'm not sure what to suggest apart from general comments like - 'read all you can about AS and Tourettes', 'look after your self' and 'focus on one thing at a time'... I have to go out now, sorry can't spend long writing, just wanted to let you know that you are not alone! Cheers Delyth

Hi Great news... very exciting. And good to hear from you again. I haven't been here much lately neither but do pop in every now and again so it's great to hear the news. Hope the meeting went well... maybe our groups might even get to meet up one day! Best wishes Delyth

Hi Baranigirl My partner has AS but rarely has meltdowns (thank goodness!) so I'm not sure what to suggest... It's great that he's keen to get some help and it sounds to me that professional help is needed really to deal with this level of anger. Have you tried walking away/out when he does meltdown or can he find a place to take his anger? And has he any idea of the effect of his behaviour on his family? Are you able to discuss it at another time? Sorry for the questions! Hope you get some ideas here... and do make sure you keep yourselves safe. Angry adults that are out of control are particularly scary! Best wishes Delyth

Hi Melanster Welcome to the forum. My partner was AS diagnosed just over three years ago. We've been together for the past 20 years and have three children. Since he was diagnosed and the difficulties he has with communication understood by both of us, our relationship has become much stronger. Now we can generally work through issues rather than going round and round all the time! Before this diagnosis though, we were both pretty miserable and our relationship was very troubled. It was a very lonely time indeed. There is a support group for partners in east london - www.whydoesmypartner.co.uk and you would be welcome to come along and share your experiences if it would help. In the meantime, feel free to ask any questions or share. It's probably best to post in the "Beyond Adolescence" area. Best wishes Delyth

Hello My AS husband and I have been together for over 20 years on and off, and lived together for about 11 years. He was diagnosed 3 years ago. I get frustrated sometimes and so does my DH. I think it's inevitable given the nature of AS and the general ups and down of every day life. It can be quite challenging at times. And I'm sure there isn't a parent here who hasn't had days of despair occasionally. Be kind to yourself - I'm sure you are to your husband. It sounds like you are doing all the right things, so having an off day now and then is ok. Even an off month or so too. In time you will be able to work out how to be together in ways that are not so stressful for either of you, it just might seem to take a long time to work it out. Well, it has for us anyway and we still get it wrong at times. And it might be a big disappointment to you to realise that your OH really can't do the social stuff - that's ok too, to be disappointed. I think the trick is to get your social needs met with other people and focus on other positive aspects of your relationship with your OH. It isn't easy, so look after yourself. Delyth

Hi all We watched this programme the other evening and thought it was fascinating. Just wondered if other people saw it and what you thought about it. http://www.bbc.co.uk/programmes/b00p26x7 or the youtube link: Best wishes Delyth

Hi Obi My husband was diagnosed at the NAS Elliot House centre... might be called the Lorna Wing centre now, but you'll find it on the NAS site. Lucky for you - it's in Kent. We live in East London and the centre is one of our closest places. This was three years ago when he was 45 years old. The NAS also provided us with a list of qualified professionals with experience of diagnosing AS and I think I remember that there was one or two in Kent? Our LA funded his diagnosis and also is currently funding counselling with an experienced counsellor - not in our area neither! Am happy to give more details if needed. Getting a diagnosis definitely helped rescue our marriage - we could begin to understand why his behaviour was, on too many occasions, at odds with being the caring and loving man we knew he was. I think your examples of the kind of communication breakdown that occurs between you and your wife is highly observant. The fact that you have this awareness means that you both will be able to understand each other in time and rebuild your marriage. Good luck and best wishes Delyth

Hi Janelizzie I remember how alone I felt a few years ago when first trying to understand AS and my partner and our relationship - there is such a lot of info to get to grips with. In fact, I am still on that learning journey! I didn't have any knowledge about AS so it was really starting from scratch. Welcome to the forum and I hope you start to feel less alone. I am 47 and my AS partner and I have been together for most of 20 yearsand we have three children. Most of the time we are happy now. We decided that getting a diagnosis was the right thing for my partner for many reasons... we made a big 'for and against' chart at the time which helped a great deal to see things clearly. I can remember some of the advantages - it meant he would be more likely to access the right support for his anxiety, we could find the right reasons to explain his behaviour that was at odds with being in a caring relationship, we felt our children should know without any doubts. I am sure there were other reasons but I can't remember them off the top of my head. And please don't apologise for disorganised ramblings. I didn't think they were, but even if so, often that's the only way to find the answers! Best wishes Delyth

Hello Hairspray Queen Welcome to the forum. I'm happy to make friends - though find it difficult to do so on a forum due to time constraints and I can't write quickly enough, but it's a great place to start. I'm a not-so-young 47yr old NT with an AS partner. We've been together for most of 20 years and most of it happily, but I think we do both have to work a little harder than perhaps people who are in a relationship that does not involve a diagnostic level of 'communication and social difficulty'. My partner and I have developed all kinds of strategies to help ourselves over the years and I am happy to share anything that might be relevant. Meeting others with similar challenges is one of the best things for me and which prompted me to start up a support group (it's free!) in East London. You are welcome to come along if you are able and think it would be useful. Details are on the website: www.whydoesmypartner.co.uk Best wishes Delyth

Hello everyone After two years of trying to get funding for counselling support for my husband (AS) our local authority agreed to fund 3 months' worth at the end of last year. That funding ended 6 months ago and he then applied for further funding. We have just heard from our local authority that they are going to fund a further 6 months of counselling support. And the best bit is that they recommend counselling for the whole family: "the approach taken should include the entire family as there are marked advantages when interventions for individuals with Asperger's syndrome include family members" I am so happy that they have recognised this need because it really is such a struggle at times for all of us - not just myself and my husband, but our children too. Hooray! Dare I hope that the struggles of partners/spouses and other supportive family members are finally being acknowledged? I do hope so. Best wishes to everyone Delyth

Hi Lulu I found that the best way I could support my partner was firstly to look after myself and to make sure I was happy, healthy and strong. This meant: regular exercise, sorting physical 'aches and pains', meeting my friends - frequently, enjoying work, getting some counselling, being creative, keeping a diary etc etc. And we also lived separately for a period of time. I suggest you do what ever you need to get yourself strong, and then you can be a source of strength for your partner. There is also a website and discussion forum for people in AS/NS relationships that might be able to help: www.aspires-relationships.com Look after yourself first. Delyth

Hi Lulu Welcome to the forum. All the above does seem to indicate an ASD to me - though I am not qualified to diagnose of course! It also seems to me that your partner has some very complex mental health issues at the moment too which might be complicating matters a great deal and clouding the issues. I can see that life is very stressful for both of you but it's great that you may finally be able to get some answers and work out a way forward. My partner was diagnosed a few years ago with Asperger Syndrome. To help us decide if he was likely to be on the spectrum we used the NAS guidelines, the diagnostic criteria and a great book "Asperger Syndrome and long term relationships" by Ashley Stanford. We went through all of the criteria and began to see how and if my partner 'fitted'. Eventually having our suspicions confirmed with a diagnosis has enabled us to work to save our marriage. Best wishes Delyth

Hi Louise Welcome to the forum. My partner has Asperger Syndrome. Nice to meet you.... Best wishes Delyth

Hi My husband had his diagnosis a couple of years ago when he was 44years and the assessment involved answering questions - lots of them! The questions were not tests but questions about his life experiences and areas of difficulty, as far as I remember. (Seems a long time ago!). I went with him (as requested) and was occasionally needed to confirm things or expand a little more or clarify questions or answers when needed. Before he went we phoned the centre and asked what would happen on the day and they were very helpful and told us exactly what to expect. Perhaps you could contact the place that you are going to and get some more info? I think the NAS have some useful advice on their website too about the kind of questions that might be asked. Might be worth having a look? Good luck Best wishes Delyth

Hi I'm glad the bullying is being dealt with - hope it gets sorted quickly. The comment your boss made reminded me of a comment that a counsellor once made after speaking with my husband (AS) for a couple of hours... she said that she found it difficult to get a sense of 'him', even after 2 hours of discussion. My husband has also said that when he is in the company of other people he feels like he looses his identity and sense of self. He finds it difficult to voice thoughts, opinions etc. and actively participate in conversations. He soon withdraws. This means that when in his company, people do not get a strong sense of 'him', hardly any sense of him, what his opinions are etc. etc. Maybe your boss is experiencing something similar with you and his comment was meant as an observation rather than a criticism? He could have perhaps worded it better and less... accusatory?....but maybe he lacks the vocabulary to explain his feeling? So, to answer your question, I don't think a disability in general makes a personality, but am aware that, for my husband, the level of anxiety he feels when in company certainly masks his personality. This might make others feel that he has no personality. Hope this makes some sense! Best wishes Delyth

Hi It all sounds very frustrating... maybe try and get an early appointment and the GP won't be feeling quite so hurried or bothered by the amount of time it takes? When my husband went to the GP to ask for a referral to an AS specialist he used the guidelines from the NAS website to help him prepare and answer the GP question 'why?'. He didn't need to book a double appointment. I also went with him, in case he needed any help. Is there anyone who could attend with you, if you think that they could help? Good luck Delyth

Hi Zoe My husband was diagnosed in Kent. I will pm you to give you the details. The National Autistic Society are also able to send you details of services in your area if you contact them. Best wishes Delyth

Hi Baddad Sorry it's taken me so long to respond - busy with work and domestic duties! Thanks for sharing your concerns. I understand what you are saying and I really wish I had more time to discuss your comments in depth and give them the attention they deserve as I fully appreciate what you are saying. Sorry that I can't. Having said this, I do spend a great deal of time considering the issues, just haven't the time to write it down and debate! The support group that I am developing does have clear aims and rules of conduct that people agree to abide by just like this forum or any other public forum. The main aim is to promote understanding and better communication between AS and non-AS. People who come are genuinely seeking this aim and my role is to ensure that this is kept to. If any person was seen, felt or heard to be abusive, patronising or with motives other than gaining insight and understanding they would not be allowed to attend. Interestingly, of the few partners that have started coming, most do not blame AS for their relationship difficulties but are more inclined to blame themselves. Once again, thanks for your comments and sorry I am unable to reply in depth to them on this forum. Best wishes Delyth

Oh dear... just a quick comment before I dash off to collect children from school... Baddad - I will find the time soon to reply to your comments, probably not til the weekend though as am busy next couple of days. Thanks for raising your concerns. I will get back to you. Just to say that I understand all of what you are saying and have had/do have similar concerns and doubts regarding the issues you mention. I think it is good to voice them and discuss as they are important. Bid - thanks for your attempts to support. Will write again soon... sorry unable to give it the time needed right now! A little frustrating for all! Delyth

Thanks for your comment Bid. Much appreciated. Delyth

Hello All Have just updated the partner support group website and have now included a question and answer page. Please do send in any relevant questions or answers. Would be lovely to hear from you! And any feedback at all would be very welcome. Thanks Delyth http://www.whydoesmypartner.co.uk (Edited to create direct link to site- K)

Hello Dee My partner decided to get a diagnosis and we used the NAS guidelines to help him achieve this. There was a false start when he was referred to a non-specialist rather than someone qualified to diagnose, so do make sure your referral is to the right person. This probably happened because our GP has never referred an adult before so didn't fully understand the necessary process. The first referral concluded wrongly that my partner didn't have AS and this conclusion could have been harmful if we had had any doubts ourselves and hadn't insisted on a re-referral. The whole process took about a year. It was worth it though. Getting the diagnosis saved our relationship - we could now understand his 'odd' and at times somewhat 'anti-relationship' behaviour and our relationship is now healthy and strong enough to cope with the challenges. Good luck to you. Nice to meet you on the forum. Best wishes Delyth

Hi I think I would try a chart and get your son involved in choosing the appropriate activities. I would also go through the expectations a few times the day before, a few reminders. I might expect to be with him the first morning or two, maybe three?, to help him follow the chart and then try and see if he can follow it independently on day three or four. I might also make sure he has something to eat ready when he wakes up - a piece of fruit or whatever - to avoid the low-sugar-levels-bad-behaviour scenes. Good luck Delyth

Hi - yes it is a shame we are so far apart.... I am thinking.... it might be possible to meet up in the 'middle' somewhere one day??? Will give it some more thought.... It's one of the issues for the support group... people are too far away to meet very often so it's difficult to develop a solid core .... but.... so.....maybe..... if there are a few people all over the country it might still be possible to meet centrally but less often... I shall think some more.... I am happy to co ordinate if there are spouses wishing to join in.... Will get back in touch with some thoughts... Delyth

Hi Pinkfreud Welcome to the forum. I have been with my AS partner for 20 years and we now have a good relationship within which we can cope with the challenges AS brings. For us, once we identified how my partner has adapted his behaviour (or mal-adapted!) because of AS and we began to have a better understanding of his difficulties, as well as understanding how my responses to his behaviours were fuelling the fire, we have been able to start unravelling the problems and build a better relationship. My partner is trying CBT but it's a little too early to tell if it is useful yet - we are hopeful though. We have tried other couple counselling which helped me personally to set clearer boundaries within our relationship, which is a vital skill to have learned, but the counselling was not able to help us as a couple probably due to the 'feelings' focus and lack of AS knowledge of the counsellor. I think it's great that you have discovered AS so early on and are both willing to learn now before unhealthy patterns become too ingrained. I found Ashley Stanford's book quite helpful as well as Attwood and Aston (but ignore the lack of optimism for change in these two) and many more but can't remember the titles...will look them up for you if you need any more. I am also setting up a support group for spouses and new members are very welcome. www.whydoesmypartner.co.uk If you are ever in London and would like to meet, do let me know. I found it all a bit lonely at the beginning! Best wishes Delyth