I think that my partner probably has AS

[janelizzie]

Hello everyone. I am new here and I feel rather alone and in a dilemma. I am currently educating myself on the symptoms of AS and I am reading my way through 'The Complete Guide to Asperger's Syndrome' by Tony Attwood and trying to get as much information as I can. I have been with my partner, John, for nearly 34 years and I love him very much. He has not been diagnosed with AS and as yet we have not made any plans to seek a diagnosis. John is sensitive, kind, intelligent and loving but 'different'. He lacks confidence, has low self esteem but can be fairly sociable with close friends who know him and his ways. This may sound silly (after all these years) but in the last few months I feel that I have suddenly been enlightened by the information that I have learnt about AS and how the symptoms just seem to fit with his personality.

John is 57 years old and we are together almost 24/7 as we live and work together. Both domestically and in our work, I am the one who organises things & gets things done and I am not even sure if John would admit to this fact as he is so used to this. He does not know what to do if I am upset so I tend not to tell him and if it is obvious, he just says that he doesn't know what do or say. Years ago I jokingly called him a 'Vulcan' a referral his likeness to Dr Spock of Star Trek fame and over the years we would both occasionally have a laugh about this when his behaviour seemed Vulcan-like. Generally, he copes very well in life apart from suffering quite badly from anxiety for which he has been on medication for years. A few years ago he saw a counsellor to try to cure himself of his anxiety problems but it didn't help. His anxiety becomes a problem when we are going out either socially or for work reasons. I have noticed that his anxiety is getting worse as he gets older. I could probably write a short book about the rest of his personality traits and other problems and how his AS like behaviour has affected our relationship and the subsequent affect on my own mental health but I won't do this here. What I would really like to know from anyone else is, is do you think that it is worth attempting to seek a diagnosis and what benefits, if any, would that bring? It is only about 2 weeks ago since I found the courage to discuss with him the possibility of him having AS and to my surprise he was reasonably open to the suggestion. I do know, however, that any further discussion on the subject would have to be instigated by me. He does not want me to discuss this with anyone else ie. family or friends, so I do feel rather isolated.

Is there anyone else here who has had any similar experiences? I would love to have the opportunity to get some feedback or advice. Thank you for reading this and I apologise for my disorganised ramblings.

[Teresa]

Hi just want to say welcome to the forum i'm sure that someone who has a husband/partner with AS, might be able to help in some way. Hope you find the advice your looking for, i'm a parent of a 19yr old who has AS so hard for me to give that sort of advice.

 

Regards

Teresa

[bid]

Welcome to the forum

 

I am an adult who was diagnosed with AS when I was 40, so I would say it's never too late!

 

However, I would also say that if an adult is going to pursue an assessment and possible dx they have to want to explore this about themselves, as it isn't an easy journey either psychologically/emotionally or practically as it's very difficult to get an NHS referral and local mental health teams can be very ignorant about AS and cause a great deal of distress as a result. My personal opinion is that if the main desire and impetus for a dx of AS comes from a partner, whether it is accurate or not, then I can't see anything very positive coming from this.

 

In my case, my son's paed. first suggested it might be appropriate for me to seek a dx, and as an emotionally uninvolved professional she was able to present this as a very positive thing. However, I can also see how if the desire comes from a partner, it could very easily appear as something very negative and critical to the person involved.

 

You say that your partner doesn't want you to discuss this with anyone else. If he is quite happy as he is, then maybe you have to content yourself with understanding as much as you can about AS rather than pushing for a formal dx.

 

Hope that makes sense, and doesn't seem too harsh, as that's not my intention

 

Bid

 

 

[joybed]

Hi and welcome to the forum. My father is also 57 and has many characteristics of someone with AS. As my sister and I were growing up we instinctively new that he loved us very much but had great difficulty showing it, if we were upset he really didn,t know how to behave and became very embarrassed if we hugged or kissed him, as i grew older i used to do this all the more as i am a naturally very affectionate person and although he didn,t push me away he it obviously felt very uncomfortable to him. He would read to us but not really play with us, any days out were centred around his train obsession or trips to coal mines (his occupation) or engineering type things. He kept lists of things which he was very obsessive about (copies in a book the top 40 since 1975 and still has copies of these). He ate from the same bowl, used the same knife and fork and woebetide anyone who used them. We holidayed in the same place every year (they still do) celebrated events in exactly the same way every year and life was very predictable. As an adult he has work colleagues who would like to spend time with him but he can,t understand this and questions why they would want to contact him outside of work. He is very uncomfrtable at social gatherings and can,t wait to get home to have what he calls his yoghurt cuppa (cup of tea and a yoghurt) he can,t sleep without this and this is a standing joke within the family. When he visits my sister and I he is oddly formal in that he knocks and waits for us to answer the door and he never sits down he stays about 5 minutes chatting in the hallway and then gets home for his favourite TV programme. As we grew up we accepted these aspects of his behaviour and never really questioned it.

When my first son was diagnosed with ASD in 2000 my dad asked me if i thought it had come from him and we all generally agreed that yes he was AS. Nothing else was said until DS2 was diagnosed in june and my Dad surprisingly became very upset and apologise to me and said it was obviously his fault as he also had ASD. This upset us all. It has never entered his head to get a diagnosis as he holds down a good job with good income and is happy in his own world. Him and my mum leave very seperate lives together IYSWIM that are happy with and she accepts him as he is. He is a truly wonderful man and i am very proud of him and wouldn,t change him for the world.

[barefoot wend]

Welcome to the forum JaneLizzie and I enjoyed reading your eloquent post that made me think of my own Dad.

 

I always knew my father struggled with things but had no idea why until my son was diagnosed with AS and it then all seemed blindingly obvious. My father died fifteen years ago and my mother died a couple of months ago. They had a very long, happy marriage with six children but it was my Mum who dealt with all the practical issues in our family. I was lucky that my Dad was pretty affectionate so I always felt very loved, but even as a young child I often felt like I was looking out for him.

 

He suffered from depression more as he got older and I think that a diagnosis may have helped him to understand himself better and seek more help when things were difficult for him. I agree with Bid that a diagnosis is something that would have to come from your husband and is difficult to get on the NHS.

 

Barefoot

 

P.S. Joybed, a lovely post about a special Dad.

[bid]

Joybed and Barefoot <'>

 

Thank you...you could be writing about my lovely dad too who died 3 years ago

 

He was identified as having autism at the end of his life by the mental health team who were dealing with his dementia. We had an unusual childhood as a result, but he loved us all so much, gave us a belief that we could do anything we put our minds to and never to accept anything without questioning it. He was passionate about special needs as this is where he spent most of his professional career (and he was very successful, retiring as a principal lecturer).

 

Joybed, you made me smile, because one of my dad's great obsessions all his life was railways and steam trains (Southern line of course!). And your dad's visits reminded me of my dad's phone calls: he would always say 'Hello, this is *full name*, your father'!

 

Barefoot, I really identify with what you say about feeling you had to 'look out' for your dad...even as a child I felt I had to look after mine in social situations.

 

Also, just wanted to say that I am hugely proud of my dad, as he struggled through with no recognition, help or support for his AS until the last part of his life when my son was dx'd.

 

Bid

Edited July 28, 2009 by bid

[Guest featherways]

I have a full diagnosis of Asperger syndrome, which I only sought in my 40s (though I knew much earlier). For me, it was vital, because I have to do so much work that involves social contact and I really need people to understand the differences and my needs. But that was a very personal decision. I know of many people who fit the criteria, but who have no wish to go for a formal diagnosis because there isn't a point to having one, for them.

 

How did it benefit me? I realised I could stop being so harsh with myself. Others could understand that I wasn't just being rude or unco-operative or antisocial. And I learned why I found so many things so very exhausting or difficult. It's been a journey, and one that I have really enjoyed.

 

If he does get a diagnosis, he doesn't have to tell anyone. If he goes private, not even his doctors. It's just for his own information. But it's up to him.

 

It's so good that he has you in his life, and that you're starting to understand what may be behind his behaviour.

 

We're specialists whose sensory world is so very different to everyone else's. There are a lot of myths and misconceptions about us, and the press is always finding some sensational story to frighten people with or make them think it's always a disaster or a tragedy, but for most of us it isn't. We just need to pace ourselves, and gently test out the world and the people in it in ways we can cope with. And to have our 'downtime' with our interests and hobbies and behaviours. Not hugely difficult once people realise those needs.

[flyingladybird]

hi I'm undiagnosed AS, female at the beginning of starting my diagnostic journey.

 

this is a difficult one to answer.

my bf has high IQ with a successful career and got obsessional interest and he can come across as socio-insensitive and he rarely got any mates locally apart from colleagues at work and old mates whom he grew up with (I had never met). since I am quite a loner so we sort of work.

 

I often suspected if he was high functioning/AS with high IQ but my gp who didn't meet him said he must have a personality disorder and some kind of sociotrophy. (gp and I never discussed re AS)

 

my conclusion is because my bf has got high IQ, sometimes it's his arrogance that makes him look like he's not "ordinary". He CAN do things for himself in a matter of second if he decides to do but he's not wanting to lift his fingers whilst he would do anything for his hobby/interest.

 

I think some men are just like that and how their Mother had treated them.

 

 

 

 

 

[dee23]

Hi janelizzie. My partner alex and myself are currently reading tony attwoods complete guide too. He is 34 and i have known him for 13 years, you could say the word partner is shorthand now, as we are not what you could call a couple anymore. He stays at my house a lot but also lives in a caravan near his work, and i am more of a friend/support person/carer these days! It is an amazing experience isn't it? Starting to find out about AS, and reading things that could have been written about your other half and your relationship. I fully understand how much there could be behind your few words referring to your own mental health. We started looking at this back in feb/march time, i stumbled across a passing remark on a parenting forum that made me google aspergers, i began to read and can only describe it as the hairs on my neck standing up.... when alex began to read about AS too he said it was like a chink of light entering his life for the first time. I have posted a lot about him on another thread, but it seems that, due to a sympathetic gp, he is now at the beginning of seeking formal assessment and diagnosis. This is very important to him. I never pushed the idea, i had already read enough to know how long and hard the process can be, and i was worried he may not be strong enough, but right from the beginning it was what he wanted. I think he is looking for validation, explanations for his behaviour, a way to explain himself to some of the people he has hurt over the years, and a way to understand himself. Accepting self-diagnosis has not worked for him, it seems to have upset and unsettled him more than ever recently, as he has also begun to think about things from childhood that have been difficult for him to remember. He also suffers from anxiety, to a huge and damaging degree. During anxiety attacks he hurts himself, he has hurt me, damaged things, caused huge scenes in public to the degree that i am amazed he has never been arrested. Learning about AS has enabled me to separate his anxiety driven behaviour from the rest of his personality, which has been useful for me. I had begun to see him as a horrible person, the most monstrously selfish individual i had ever met, who cared nothing for me or anyone else. Learning about aspergers has completely changed those feelings, which has helped me so much to deal with the huge anger i was feeling. It is hard now to look back at it as so much has changed, but i do remember posting on a partners forum that i was no longer falling asleep with my teeth clenched in rage! Personally i think that his anxiety has a greater impact on his life, but it is inextricably linked with his rigid thinking and need for routine and control, and with his sensory difficulties - he is easily overwhelmed by people, heat, noise etc etc. He needs help with the anxiety, but for it to be effective he would need it to recognise and work with these underlying issues, and to get help that was geared to AS he would need the diagnosis, so it is important for him for practical purposes too.

 

On the subject of forums, i find them a great help and comfort. You need to think about you in all this too. It can become almost addictive studying aspergers, when you are finding this rush of explanations for things, and feel that you are putting together the jigsaw of your life, maybe for the first time. I immersed myself in it for a while, spending hours at a time on the internet. I found a forum for partners, i think it is called ASPartners, that i used for a while. There are sections of it that are full of pain though. There are a lot of people who are seeking strength to leave their partners, or who need a safe space to express their anger, sometimes hatred, towards their partners, and i decided that that was not for me. However, there is also a section for successful relationships too, where the emphasis is on coping strategies and positivity. This forum we are on now has become my favourite though, and i have really benefitted from being able to correspond with and get the views of people with AS here, as well as other partners/relatives etc. Even just reading through old threads can provide a huge source of information and comfort. You are definately not alone jane lizzie <'> <'> it is a good place here, keep posting, and just checking in and reading. Do not apologise for your ramblings!! I know just where your head is at the moment, and sometimes we need to ramble just to get it all out! (And do feel free to pm me if you ever want privacy.)

[janelizzie]

A big THANK YOU to everyone for your thoughtful and supportive advice. I really am touched <'> It's reassuring to hear from others, especially those of you who have experience of adults who suffer from AS, whether diagnosed or not. The issue of undiagnosed adults has been and still is obviously a big problem both for sufferers and their partners and family members. It's a great shame that so many people have suffered in the past due to a lack of knowledge. Many of todays adults missed out on receiving any help when they were in the education system due to this lack of knowledge yet they are still suffering in silence and ignorance because the 'system' does not reach out to them.

I am seriously questioning whether there is any benefit in even suggesting to John that he should consider seeking a diagnosis. He is due to see his GP very soon to review his medication for anxiety and I have asked him if he wouldn't mind if I go along with him and maybe just ask whether if he did have AS if this would have any relevance to his prescription/treatment. He has agreed to this. His anxiety is definitely a big problem for him, particularly in the days proceeding an 'event' or appointment and this frustrates him very much because he feels he has no control. It seems like a vicious circle of anxiety & not having control = more anxiety and so on. To John, 'being/feeling in control' is very important. The anxiety starts several days before the event/appointment and he becomes over focused, excluding other day to day issues. When he is in a very anxious state he eg. just before he goes out, he keeps rushing to the toilet, when usually there is no need. On a journey to an appointment or whilst waiting, he pinches himself, which he says helps to distract his mind. Does anyone else know of these symptoms and behaviours?

I'm so pleased that I found this group. You all seem to be so lovely!

 

[Guest featherways]

... His anxiety is definitely a big problem for him, particularly in the days proceeding an 'event' or appointment and this frustrates him very much because he feels he has no control... The anxiety starts several days before the event/appointment and he becomes over focused, excluding other day to day issues. When he is in a very anxious state he eg. just before he goes out, he keeps rushing to the toilet, when usually there is no need. On a journey to an appointment or whilst waiting, he pinches himself, which he says helps to distract his mind. Does anyone else know of these symptoms and behaviours?

 

Yup. If I'm planning something, I'll want to know every detail about what will happen. No detail? Might as well push me off a mountain with no parachute or ropes. That's the level of scariness. If he's ASC, he's using a repetitive behaviour because he's not got enough info on what will happen next, so his brain is doing that most typical of ASC things - panicking. It's not neurotic...it's because of the sensory needs. We have to know what hazards are ahead for us, for our safety and our ability to cope. A room might be just a room for you, but to me it might have flickering overhead lighting that is overwhelming. Echoey walls that distort all sound. Background noise that makes it impossible to hear anything. People jostling into me in a crowd, which means huge pain for me. Sudden group conversations on subjects unannounced, which means I have to struggle against all of that overload to have a sensible conversation. And I can't see the people properly, which means I'm missing all the non-verbal clues and will probably end up making people angry/disappointed in me because they can't work out why I'm not answering 'correctly'. (sigh).

[Mumble]

His anxiety is definitely a big problem for him, particularly in the days proceeding an 'event' or appointment and this frustrates him very much because he feels he has no control. It seems like a vicious circle of anxiety & not having control = more anxiety and so on. To John, 'being/feeling in control' is very important. The anxiety starts several days before the event/appointment and he becomes over focused, excluding other day to day issues.

This is a huge difficulty I have but I have been learning to do something about it rather than constantly going over it or explaining it away as what I would do because of ASD which can be self-fulfilling and doesn't help you move forwards.

 

I have three medical appointments next week so I have three documents I keep on my computer (or the less technical version would be three pieces of paper ) which I just add the issues to, things I need to discuss, concerns, anything really as I think of them. I then set aside some time to tidy them up before the appointment. It means there's no risk of forgetting things and removes many of the worries - for some appointments I also print a copy for the person I'm seeing as they know I communicate better in writing.

 

By setting aside a time when you allow yourself to do this/worry about it, you also put time back into your day for day to day issues.

[smiley1590]

i'm NOT a partner of someone living with AS/ASD but i suffer with the condition myself and to be in 'normal' world then 'thrown into' the ASD world is very complex confusing isolating so many issues rushing round is hard to cope and deal with and know how best way to iimprove situation for both of you! must be very stressful and difficult! i single at the moment and can't begin to imagine try to think like us to make it 'better'! your life must seem just focused on ASD at the moment as want unanswered questions behind what's going on you know your husband better than anyone! i can understand how living with this day in day out with 'everything' you put up with must 'damage' literally you own MH put it under pressure at risk where you feel you can't take it even though it part of him he can't help it! get sick of it wish it disappear at times must make feel like runaway and screaming! have u read any books for partners on ASD spectrum??

 

hope these web links help with information and resources to help you in yout time of need! don't forget about yourself remember who you are! contact the NAS by email phone and ask for referral they be able to give more help and support

 

http://www.nas.org.uk/nas/jsp/polopoly.jsp?d=545

 

http://www.nas.org.uk/nas/jsp/polopoly.jsp?d=126

 

good luck with everything going on hope get it sorted finally!

take care

XKLX

[smiley1590]

alot people without ASD in their daily lives being affected like to 'feel sense of complete and utter control' there beside them but for someone with ASD this becomes more intense obssessive at times due to routine and structure importance to us if we havn't got control that's when 'pure anxiety' feelings and thoughts 'step into' that place making it awakard and upsetting for everyoner involved can be VERY restricting yet annoying and frustrating for people around us trying best to help and support! hard to predict what comes next with 'us guys'! i'm so like this it's so REAL FACT to me live and breathe this part of it! and it does 'take over' everything else i just focus on 'one thing' due to anxiety ,nerves ,stress,worry etc messes around with anything in it's way at that particular time and what ever is expected frome me takes all my time,effort and energy! so probably same for you too! it quite common really!

[smiley1590]

he probably dreads appointments because social skills he gets confused anxious frustrated and also a change in environment ,peoples,situation so doesn't know where to begin and start in overcoming the 'first step' of easing this process each time of different tasks asked of him! daily task thing can be overlooked as can adapt and cope the tools we put in place but can still be that overwhelming! grrr..... never ending adventures that can't work out endings without help and support guidance etc from family friends etc

[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

[bid]

Not trying to be picky or anything, but I do find it uncomfortable when people say that others 'suffer' from AS.

 

I have AS, and I don't consider that I 'suffer' from anything.

 

Obviously, just my personal opinion...

 

Bid

[cmuir]

Hi

 

I'm very much for seeking diagnoses irrespective of age if there's little doubt that that's what a person has. For one thing I believe that people can go through life knowing that they were 'different', have anxiety issues, difficulty socialising/interacting, have special interests, feel like they're a failure (and other negative issues). I think it's important to turn that around - adults that go for years without a diagnosis and then become diagnosed, really deserve an acknowledgement that they're truly amazing (it's a massive achievement) to have gone through life and developed coping strategies. I believe that it would bring a sense of relief as well. Nowadays, whilst there can be big holes in terms of support, etc, things have improved. Along with a diagnosis comes answers and support networks can be offered (ones that perhaps aren't accessible without a diagnosis). If, for example, you go to the doctors with a mystery ailment after having suffered for a very long time, to be told by the doctor 'yes, it's .... take this and you'll start to feel better' (if only it were that simple!), think how you would feel. Once you know what you're up against, you can deal with it.

 

I do appreciate it's ultimately a very personal decision whether to seek a diagnosis or not, but I've got a son with AS, a husband suspected of AS (by my son's consultant), a great uncle with AS and an uncle with Tourettes. I've witnessed the difficulties faced by them first-hand. I've also been very aware that they did appear 'odd', 'eccentric', etc and of the responses from others that they'd get. Suddenly, it's all started to make sense (it's not their fault).

 

Sorry, rambling a bit.

 

Best wishes with whatever you both decide.

 

C.

[steve123]

Having just been through the diagnosis stage of things, if anyone has any questions let me know. My assessment turned out to be negative, though I do did have a few of what you consider traits when I was around my then partner.

 

There is help out there for people if you want it, the main thing I found is persisting and finding a decent doctor as the wheels of the NHS move very slowly.

 

The one thing I would say is steer well clear of "AS Partners" as they do not post any positive or constructive advice, i've tried to post some helpful tips on there and it just doesn't appear - so if you stumble across that site take it with a strong pinch of salt.

Edited September 7, 2009 by steve123

[flyingladybird]

I hadn't been on this site for some time. (I was busy traveling in my time called life lol lol)

 

going back to OT (as below)

 

 

I have noticed that his anxiety is getting worse as he gets older. I could probably write a short book about the rest of his personality traits and other problems and how his AS like behaviour has affected our relationship and the subsequent affect on my own mental health but I won't do this here.

 

since I posted my response some while ago, I looked back what I said on this thread.

 

Is there any development from the OT? have you decided to go for a diagnostic assessment?

 

have you tried "AS partners" etc etc. I'm kinda curious about your own journey into this subject..

 

If I am honest, my relationship with AS male (we got married since) weren't that successful.

 

(incidentally I'm AS female waiting for an assessment for the next year, roughly in July 2010)

 

since I have educated myself by reading books on the topic, more to do with learning about my own AS.

 

the main issue I had with my AS spouse was, apart from he was high functioning, not depressed with excellent career, high earner (sounds all good doesn't it?) he was dedicated to his own specialized hobby and almost he is married to the lifelong hobby(as a collector), things started to look like, other things are just incidental..

 

as you can guess, he was also in need of his own control and expect others (me in the marriage) to "follow" rather than listening to "my" concerns and have discussions between us. If I start to ask to discuss, he's far from interested in the subject and show disrespect when he just wants to indulge in his little world of perfection.

 

also as I had to give up my own career, to accommodate his needs (whilst he agreed to support me etc) he was rather developing his resentment of late, "bills are too high! do you need more house-keeping money? what?!! go get a job. woman!" whilst I have had provided a few years before we got married since he moved into my little house. Basically, I started to live on a low income and he wasn't gonna want to share his money..I would say, he had provided as much as below bread line.

 

reading some books on AS relationships, I do appreciate this is the characteristic of AS "control". he spends his own money as he pleases disregarding marriage whilst he can be exploitative or leaving wives left with a very low income. This is a real problem. I have never seen his checkbooks though he did disclose roughly what he earns prior to marriage.

 

one night the police/ambulance had to be called in for the assault when he became initially passive aggressive/abusive in AS way, followed by physical assault/manual strangulation etc. He has a very low threshold when it comes to "criticism", anything with a hint of it, he needs to be left alone as he is free to conduct himself.

 

I have been suggesting the spouse AS diagnostic assessment over a number of months prior to this incident. there is a time when one realizes a grown man with AS becomes too unbearable to live with. If more than 5 friends say, how unfair your spouse is, maybe it's time to re-think where you are heading. I am 47 years old (soon to be 48 yrs old), life is too short to put up with selfishness and spouse expectation to give into his ways.

 

choice is really yours.

 

sorry it got a bit "too much details" but thought this might help to make your mind up in your OT.

 

cheers x x x x

 

ps sorry for syntax errors etc in advance!! lol

 

 

 

 

 

 

 

 

 

 

[Mumble]

abusive in AS way

Violence is not part of nor included at any point within the ASD dx criteria. There is no 'AS way'; we are each and every one of us individuals as much as anyone else is.

 

[baddad]

Hi flying ladybird -

Am I reading this wrong, or have you self diagnosed both yourself and your husband? And part of that self diagnosis informed your understanding that physical assault, including manual strangulation, is part and parcel of the autistic condition? And that AS men are too unbearable to live with?

How awful. Guess I've been reading the wrong books and talking to the wrong professionals. Heaven help any woman that catches my son's eye in the future, and i'll make sure from now on to ensure he never comes into contact with any autistic women either - I wouldn't wish that upon my worst enemy...

 

L&P

 

BD

Edited December 5, 2009 by baddad

[bid]

Hi Flyingladybird,

 

I'm sorry, but I can't see anything of AS in the way you describe your DH! I have a dx of AS myself, as does my adult son, and my dad was identified as having 'mild' autism towards the end of his life.

 

Where on earth have you got the idea that there is some kind of 'AS' aggression or control??

 

I have to say that IMO I feel your post exemplifies all the dangers of self-diagnosis

 

Bid

Edited December 5, 2009 by bid

[Karen A]

Hi Flyingbird.

I do agree completely with BD,bid and Mumble.

I do not believe that the issues you describe have anything to do with ASD.

I am sorry to say that you describe a partner who is abusive.I do not know whether you still have any contact with this man.If you are please do not attempt to excuse his behaviour on the basis of a belief he might have AS or for any other reason come to that matter.

It appears that for whatever reason you chose to remain with him knowing that he financially abused you.

When he violently assaulted you you then attempt to justify his behaviour by lableing him with AS.

I am sorry to tell you that some men and women abuse their partners and children.That has nothing to do with ASD.

 

 

I have a son with AS.Far from being selfish he is frequently bullied because he stands up for what he believes to be right.

Karen.

 

 

[bid]

Hi Flyingbird.

I do agree completely with BD,bid and Mumble.

I do not believe that the issues you describe have anything to do with ASD.

I am sorry to say that you describe a partner who is abusive.I do not know whether you still have any contact with this man.If you are please do not attempt to excuse his behaviour on the basis of a belief he might have AS or for any other reason come to that matter.

It appears that for whatever reason you chose to remain with him knowing that he financially abused you.

When he violently assaulted you you then attempt to justify his behaviour by lableing him with AS.

I am sorry to tell you that some men and women abuse their partners and children.That has nothing to do with ASD.

 

 

I have a son with AS.Far from being selfish he is frequently bullied because he stands up for what he believes to be right.

Karen.

 

Well said

 

Bid

 

[trekster]

Violence is not part of nor included at any point within the ASD dx criteria. There is no 'AS way'; we are each and every one of us individuals as much as anyone else is.

 

Tony Attwood mentions "a malicious subgroup" who do have violence as part of their ASD. They would fit the criterion of conduct disorder/ODD as well as AS.

(Complete guide to asperger syndrome 2008)

[Mumble]

Tony Attwood mentions "a malicious subgroup" who do have violence as part of their ASD. They would fit the criterion of conduct disorder/ODD as well as AS.

(Complete guide to asperger syndrome 2008)

You don't want to get me started on what I think of Mr Attwood :angry: I know a lot of people here admire and respect his work and that's fair enough; it just really gets to me somehow.

 

I would assume the violence comes under the conduct disorder aspect, not the ASD, particularly with regards to how the symptoms would sit within the DSM-IV criteria?

 

Either way, I don't think it's right to be suggesting that violence is part and parcel of ASD.

[baddad]

You don't want to get me started on what I think of Mr Attwood :angry: I know a lot of people here admire and respect his work and that's fair enough; it just really gets to me somehow.

 

I would assume the violence comes under the conduct disorder aspect, not the ASD, particularly with regards to how the symptoms would sit within the DSM-IV criteria?

 

Either way, I don't think it's right to be suggesting that violence is part and parcel of ASD.

 

Actually, Mumble, you're not the only one to come to the conclusion in the past few years that Mr Attwood has either fallen victim of his own hype or fallen victim of believing his own hype Or it may just be that he's invested so much in telling people what they want to hear that he's forgotten how to tell , and the importance of sometimes telling, them what they don't want but do need to hear... anyhoo that's another issue.

Trekster - the 'malicious subgroup' is actually being identified with ODD/conduct disorder 'as well as'? And ODD and conduct disorder are also conditions observed in the non-autistic community? That's a co-morbid, isn't it? It's no different to the argument that (i.e.) some autistic people have red hair, therefore red hair is part of the spectrum. The argument doesn't work, because the premise isn't specific enough to validate the conclusion.

I think it is very, very reassuring and easy for parents/carers/partners (and sometimes autistic people themselves) to project 'blame' for all negative aspects of their behaviour onto their diagnosis. I also think it's incredibly dangerous, on both a personal level and for the wider autistic community. I think it is even more dangerous in cases of self-diagnosis or 'projected casual diagnosis' (i.e. someone 'home' diagnosing a partner or other family member), because even if the person does actually turn out to have an ASD the reason for seeking diagnosis may, emotionally and psychologically, be for no other purpose than to validate the negative behaviours, which might actually have nothing whatsoever to do with autism.

That concepts harder to explain; but trying to find an example: If I were a woman who had violent headaches, and I had a belief that PMT implied violent headaches, I could home diagnose PMT as the reason for my headaches. But even if my home dx was right - and I did suffer from PMT - that doesn't mean that my headaches are part of my PMT, and I could drop dead from an undiagnosed brain tumour of suffer painful migraines for years when medication could have alleviated that suffering...

 

Violence and aggression are NOT an inherent part of the autistic condition, and it is only in recent years, since defence attorneys latched on to its potential as a get out clause, that the possibility has been raised. The NAS and other lobby groups have spent a great deal of time/money trying to erase those negative assumptions and prejuidices.

 

L&P

 

BD

[Jannih]

I think that being misunderstood can lead to frustration and depending on the person's natural temperament can result in cetain forms of violence. This could apply equally to any autistic or neurotypical person. We have to acknowledge that those with ASD do have more difficulty with being understood and tolerated by society as a whole. Also we have to consider the co- morbid conditions which sometimes go along with ASD eg ADHD, OCD etc.

 

As for "controlling behaviour" I'm going to stick my neck on the block and say I agree with this one ! I have a sister who is very autistic and wants to control everything and everyone within the family, ranging from conversations i.e butting in and correcting us. She will insist that we use a saucer (that does not fit) with our mugs even if we use a coaster mat. she will " go into one, if we don't). That is a small example.

 

I personally feel the need to control my working environment. I like everything in its place such as a very tidy desk and I do not like it when someone uses my chair. I do not like it if someone wants me to work in a different way. After all my way works best for me !

 

Having a well structured environment gives anyone a sense of security, which is a good thing. I think that there is a greater need for this for people with ASD.

 

For flying Ladybird - You do not have to put up with your partner's controlling behaviour especially if it's affectiong you emotionally, socially materially and in every aspect of your life. You have needs too. If he cannot compromise or refuses help to change, then you should not feel guilty if you decide enough is enough.

 

 

 

[Karen A]

Trekster - the 'malicious subgroup' is actually being identified with ODD/conduct disorder 'as well as'? And ODD and conduct disorder are also conditions observed in the non-autistic community? That's a co-morbid, isn't it? It's no different to the argument that (i.e.) some autistic people have red hair, therefore red hair is part of the spectrum. The argument doesn't work, because the premise isn't specific enough to validate the conclusion.

I think it is very, very reassuring and easy for parents/carers/partners (and sometimes autistic people themselves) to project 'blame' for all negative aspects of their behaviour onto their diagnosis. I also think it's incredibly dangerous, on both a personal level and for the wider autistic community. I think it is even more dangerous in cases of self-diagnosis or 'projected casual diagnosis' (i.e. someone 'home' diagnosing a partner or other family member), because even if the person does actually turn out to have an ASD the reason for seeking diagnosis may, emotionally and psychologically, be for no other purpose than to validate the negative behaviours, which might actually have nothing whatsoever to do with autism.

That concepts harder to explain; but trying to find an example: If I were a woman who had violent headaches, and I had a belief that PMT implied violent headaches, I could home diagnose PMT as the reason for my headaches. But even if my home dx was right - and I did suffer from PMT - that doesn't mean that my headaches are part of my PMT, and I could drop dead from an undiagnosed brain tumour of suffer painful migraines for years when medication could have alleviated that suffering...

 

 

 

L&P

 

BD

 

The other thing that struck me reading the example BD gives of the women with PMT and headaches.

If the woman did self-diagnose headaches due to PMT she would then presumably seek treatment for her PMT or at least research remedies that were known to work.

I do not believe there is any link between ASD and abusive behaviour.Perhaps in conduct disorder there might be.However the information should enable an individual to examine what they can do to change their behaviour.It is not an excuse to justify behaviour that is unacceptable.

As I said the woman would not decide that now she had found the reason for her headaches she would do nothing at all about it but put it down to PMT.....at the very least she would try taking paracetamol.

If the same woman became an absolute pain in the neck towards her husband because she had a headache due to PMT he would expect her to do something about it.He would not accept the response that she had found out why she had the headache and so it was ok.

 

An individual might decide that they wish to live with a situation that is uncomfortable for them [as in the woman doing nothing about the headache at all] some people do.

However it would not be reasonable to expect others to continue to live with the consequences of that decision.

At the very least most people would support a husband who decided to avoid the woman with PMT and headaches at that time of the month.

 

Perhaps with some individuals with profound ASD it could be argued that they are unable to understand the consequences of their actions on others.

However the case described in flyingladybird invloves a man who was able to engage sufficiently in relationships to have a relationship in the first place.

He is able to manage the family finances and so obviously has some control over some areas of his life.

 

I believe that at the very least an individual with this level of functioning would be able to learn if he wished to do so that his behaviour was not acceptable and that he needed to obtain support or to encourage his partner to leave for her own safety.

 

Even if an individual did have conduct disorder in law that would not excuse violence towards a partner.

If a partner chose to remain with an individual knowing that that individual had a history of violence related to conduct disorder and children were within the family it would be a safeguarding children issue.

 

I have to say I am shocked that on an ASD related Forum people would support those who suggest that there could be a link between ASD and violence and that this could justify the behaviour.

 

Mental health charities are currently actively campaigning to reduce the stigma around mental ill health after years of unhelpful sensationalist media coverage which suggested that all individuals with mental health issues are dangerous.

 

On the other hand the argument is unfortunately exactly the same as that put forward by the mother of Gary Mckinnon and supported by the NAS.

That he was completely unable to take control of his behaviour and not do something illegal due to AS.

 

Karen.

 

 

 

[Karen A]

I think that being misunderstood can lead to frustration and depending on the person's natural temperament can result in cetain forms of violence. This could apply equally to any autistic or neurotypical person. We have to acknowledge that those with ASD do have more difficulty with being understood and tolerated by society as a whole. Also we have to consider the co- morbid conditions which sometimes go along with ASD eg ADHD, OCD etc.

 

As for "controlling behaviour" I'm going to stick my neck on the block and say I agree with this one ! I have a sister who is very autistic and wants to control everything and everyone within the family, ranging from conversations i.e butting in and correcting us. She will insist that we use a saucer (that does not fit) with our mugs even if we use a coaster mat. she will " go into one, if we don't). That is a small example.

 

Hi Jannih.

I just wanted to say that I do think the fact that you describe your sister as being very autistic does make a big difference.

One of my best friends has a son who is profoundly autistic.I can understand that he is often not aware of the impact of what he does on others.For example he could easily nock a toddler over if he bumped into them.

However the person described is not profoundly or severely ASD.He does not even have an AS diagnosis.He has engaged in a long term relationship and managed the family finances.

Such an individual could if he wished at the very least seak help.

 

I have a son Ben who has AS who is 11.I also have a son J who is 13.

Ben can be very controlling when he is anxious or things do not go according to plan.

However Ben has had to learn that sometimes he cannot be in control of everything.

The alternative would be that J would never get to use the Xbox,the TV or the electric guitar.

It is not that we do not appreciate that some things are much more difficult for Ben.

However we have supported him to learn to manage those things.

Ben is currently in a mainstream secondary school.He wants to be a graphic designer one day.

He would not be able to do theses things if he never learned how to manage anxiety and change.

I agree that Ben does have difficulty being understood by his NT peers in school.

However I believe the answer is to support Ben and advocate for him in challenging the beliefs that people have about ASD and to increase awareness.

I think that it can be unhelpful to make generalisations about whole groups of people based on how a few people might appear.

 

Ben is currently having difficulties at school most days.

Ben has an absolute belief in justice and finds it very difficult when other people break rules and do not behave in the way he expects.

Unfortunately several pupils in Ben's school have no regard for rules and could not care about anyone but themselves.

In the last few weeks Ben has been bullied because he expects people to take their turn in the lunch line rather than pushing in.

He has also reported bullies who were horrid to another pupil in his class who has SEN and is less able than Ben.

When I look at Ben I am in no doubt who has the difficulties and it is not Ben.

If having AS is to stick up for what is right even when that brings ridicule and to defend those less able to defend themselves then I would much rather have a son with AS than be the parent of those so called NT individuals.

Karen.

Edited December 6, 2009 by Karen A

[Karen A]

I hadn't been on this site for some time. (I was busy traveling in my time called life lol lol)

 

going back to OT (as below)

 

 

I have noticed that his anxiety is getting worse as he gets older. I could probably write a short book about the rest of his personality traits and other problems and how his AS like behaviour has affected our relationship and the subsequent affect on my own mental health but I won't do this here.

 

since I posted my response some while ago, I looked back what I said on this thread.

 

Is there any development from the OT? have you decided to go for a diagnostic assessment?

 

have you tried "AS partners" etc etc. I'm kinda curious about your own journey into this subject..

 

If I am honest, my relationship with AS male (we got married since) weren't that successful.

 

(incidentally I'm AS female waiting for an assessment for the next year, roughly in July 2010)

 

Hi.

I only just realised that you are waiting for an AS assessment.

I thought I would say that if you are thinking about assessment as a way of understaning yourself then it might be helpful.

However please do not look to AS diagnosis as a way of understaning your partners treatment of you.

The fact that you might have AS does not make your partner's behaviour acceptable.

Also please do think about who you see regarding seeking AS diagnosis.

I might have had AS but also have a history of childhood trauma.

It can be very difficulty even for specialist professionals to distiguish between a response to trauma and ASD.

An AS diagnosis will not help in dealing with the trauma.

An assessment with a professional who does not understand trauma could raise lots of difficult issues.

Karen.

[bid]

OK, I'm going to stick my neck out!

 

We have a range of people here saying they and/or their relatives/spouses may have AS, and then going on to attribute any and every negative and even aggressive behaviour to this home dx.

 

I have a formal dx of AS from Prof Baron Cohen's clinic. With his team he actually designed the AQ and EQ tests that people often do online and then decide that their results mean they have AS. But nowhere in these tests and not once in my long assessment process is aggression mentioned as part of the AS dx.

 

In my opinion this is exactly why it can be very damaging to self dx or home dx another person

 

As others have posted, I'm also increasingly uncomfortable with what I can only describe as the commercialisation of AS in regard to relationships, in particular what I believe to be the extremely disturbing 'Healing of Cassandra' workshops, etc

 

Bid

Edited December 6, 2009 by bid

[Karen A]

As others have posted, I'm also increasingly uncomfortable with what I can only describe as the commercialisation of AS in regard to relationships, in particular what I believe to be the extremely disturbing 'Healing of Cassandra' workshops, etc

 

Bid

 

What are the 'Healing of Cassandra' workshops please ?

Just wondering.

Ah don't worry Googled it.

Edited December 6, 2009 by Karen A

[NobbyNobbs]

i have a full dx of AS, and at 24 ive only ever hit one person (my sister after she ripped a chunk of hair off my head in a temper a couple of years ago). i'm incredibly passive, to the point where it damages my mental health as i can't let out anger etc. i can be controlling to the point where my parents have to remind me that other people want to do things differently, but then i am able to back off and deal with it, i dont delibrately control against the express wishes of others, i just forget that other people dont see things like i do. my AS traits are not the ones increasinly adopted by the self-dx'd. i am not rude, inconsiderate, selfish, agressive, violent, volatile, inclined to break the law etc. i find it somewhat alarming that this is what people apparently think this is what AS is about.

[bid]

Nobby

 

I've been thinking around this whole topic further...

 

It seems to me that in a similar way that autism has become 'demonised' as something that steals children by many predominantly American-based support/research groups, this has extended to the perception of AS in adult men

 

To me, this demonisation of AS men appears related to the commercialisation of AS, which further seems to present any women involved with AS men as abuse victims.

 

Bid

Edited December 6, 2009 by bid

[baddad]

Blimey - all these years of saying that blokes get the shitty end of the autism stick whichever end they go for (if they ain't autistic they're 'in denial', and often even if they have been home diagnosed by their partner they're still in denial!) and i think some people are starting to agree with me! What makes it even worse, though, is that even with all this first hand experience their input into raising their autistic children is often rejected out of hand because they 'just don't understand'...

Yes, I too am very worried about the implications of 'Cassandra' stylee workshops and support groups that focus on the 'relationship difficulties' that might be associated with having a (usually male) AS partner - especially those ones that are 'open to those who haven't got an official diagnosis'... (sorry, I know that one member here runs such a group and i will state here and now that i'm not making any 'judgements' on way or the other about that group specifically - this is a general concern, and when i made that general concern known in a thread regarding the specific group that member was very forthcoming and informative with responses)... I have said this squillions of times before, but if NT relationships are all so perfect why do we have the divorce rates that we have? That's not to say the discussion, counselling etc etc aren't can't be helpful just that focussing on AS as the root of all the problems creates a completely unreasonable and potentially abusive set of value judgements about 'blame'.

Anyhoo - wandering a long way from the initial post, but I think, clearly it shows that the assumptions made by the OP do have the potential to offend...

Oh: Karen A mentioned GMcK and the NAS's involvement in his defence. I avoided making that point because i didn't want that issue to come up again, but, Yes, i would totally agree that the NAS shot themselves in the foot by making such completely contradictory judgements, along with many other professionals who should have known better.

 

L&P

 

BD

 

OOOoops - Just realised I messed up a bit here... The 'blokes get a hard time' bit was NOT in any way intended as a comment on the behaviour of flying ladybirds (ex?) partner. Based on the info given here he totally deserves a hard time, and I'd certainly not defend such behaviour whether the perpetrator was AS or not. What I was doing was agreeing with those posts that highlight the current tendency to demonise male autistics, and the wider factor of the 'commercialisation of AS' (I prefer the term 'Aspilebrity' - but that's probably 'cos i coined it! )

Edited December 6, 2009 by baddad

[NobbyNobbs]

at 24 ive only ever hit one person (my sister after she ripped a chunk of hair off my head in a temper a couple of years ago

just to clarify my sister is 3 years older than me and is NT! it read a bit like i attacked a 6 year old

 

[Karen A]

Oh: Karen A mentioned GMcK and the NAS's involvement in his defence. I avoided making that point because i didn't want that issue to come up again, but, Yes, i would totally agree that the NAS shot themselves in the foot by making such completely contradictory judgements, along with many other professionals who should have known better

 

I had also resolved not to raise the issue again.However my reslove disappeared somewhat having listened to GMcKs mother and solicitor on five live the other morning.

The response of the NAS did not improve things much either.

Karen.

 

 

[dee23]

I missed that this was an old thread, and was then really surprised to see my name come up!

 

Further to the "AS = bad behaviour" debate..... My partner still doesn't have a diagnosis, but his GP is in the process of trying to arrange an out-of-area referral. He has however, still been teaching himself about AS, and is becoming a changed man. He had a lot of the horrible qualities that have been discussed in this post, in particular huge anger. He has not lost his temper in a long time now, but it seems to go deeper than just temper. I had been feeling for a couple of months that i wasn't going to see anger from him like i had in the past again (tempting fate here, but bear with me!), something very deep seemed to be changing in him. The other night my housemate was chatting to him about someone at her work, who had obviously met him in the past, and who had described him as "the angriest man in the world". This bothered my OH, and we chatted about it more after she had gone to bed. He was worried about what he might have done or said to make this person think that, but then he said "i don't think i have an anger management problem anymore". (He has spent years being fobbed off by various types of medical and mental health professionals, on the grounds that he "just" had an anger problem) He wasn't trying to excuse anything he has done in the past, wasn't being emotional, he just came out with it, very quietly.....just a statement.

 

I would never have thought i would hear this from him.

 

I don't know quite how to word the rest of this post...... I don't want to reduce AS to a set of "nice or nasty" qualities, i am very much of the opinion that people are just people, before any of their problems/conditions/issues etc, if you see what i mean. I know in my earlier post on this thread i said i felt that his anxiety had had a bigger impact on his life and behaviour than anything else, and i can see that even more now. It is what seems to be the quiet, almost gentle person underneath that anxiety that is surprising me. (I did point out to him the other evening that there have been times in his life when someone would only have had to see him walk across a room to have come to the conclusion he was the angriest man in the world ) He has stopped giving himself such a hard time, stopped feeling like a freak and a failure, and has allowed himself to think that actually he is doing pretty well in life. And as well as seeing some positive qualities in himself, he is learning to see his difficulties more realistically; instead of trying to go into any situation, regardless of how he can actually cope, and then having complete meltdown, he is trying to manage things and not get into horrendously stressful situations if he can help it. I think NobbyNobbs put it very well, about realising other people don't see things the same way. Alex is really putting that into practice, and also realising that other people shouldn't be expected to clear up after his meltdowns!

 

Excuse my rambling, i'm really not sure where i'm trying to go with this . Just that, if he does have AS, it was not that that caused his behaviour, when he hurt people and caused havoc around himself. (and i have to stress his lack of diagnosis, he finds it difficult to tell people he even might have AS, he feels he would be misleading them without a disgnosis) His behaviour i think was largely fear and anxiety driven, and expressed with anger; maybe caused by lack of self knowledge, lack of coping skills, inability to be like "everyone else".......

 

Don't get me wrong, he's no saint, never will be , he's just a bloke. And even if he doesn't have AS, or if he ends up not pursuing a diagnosis, just doing all this learning about it, and identifying with it, has turned him around. He seems to be learning not to fight with life all the time, i think thats the best way i could put it....

 

I never thought i would say things like this about him.....