Where's my guilt?

[Luigi]

Hi everyone,

 

I've been thinking about joining a forum that deals with aspergers for some time, so it was great when I found this one. The site looks really alive with lots of recent posts.

 

I was self diagnosed with AS a couple of years ago after our Relate marriage councillor suggested it to us. When we went home that day and googled 'asperger syndrome', it was a real shock to me that all of these web sites seemed to be talking about me. Lots of the symptoms seemed to fit. I knew straight away that I had AS to some degree, and my wife agreed. My wife didn't know whether this was good news or bad. At last she had some recognition that what she had been upset about for all these years wasn't in her head (I had told her it was). But because the sites said there was no cure, it was very upsetting for her particularly.

 

I didn't really feel any different, apart from the fact that I was reading all these accounts from partners of AS sufferers that tied in almost exactly to what my wife had been telling me for years. Therefore, although I still didn't feel any guilt for making her life a misery for years, I knew by 'mechanical reasoning' that it must be true.

 

Through my GP I had three visits to see a psychiatrist and psychologist at a local mental health clinic, and what a waste of time that was. In the waiting room I was surrounded by people who obviously had severe mental health problems, and I felt as though I was in the wrong place. The psychologist told me that, considering the severity of the cases he deals with daily, he couldn't diagnose me with AS because of how normal I was in comparison (not the exact words, but you get my drift).

 

So I'm not diagnosed as AS, but i know I have it (although not as far down the spectrum as some people that I've read about).

 

My marriage of 23 years was totally on the rocks two years ago, and has been up and down since the self diagnosis. Recently it's been a little better, but for how long? The problem is this...I know now that I haven't supported my wife emotionally (in family disputes etc), and I haven't had any empathy towards her (like when her mum died), and I've never trusted her judgement (for some reason I'd rather believe a complete stranger). But I don't feel any guilt. I want to feel some guilt, but I just don't. I want to break down and get upset about the past, but something inside me is stopping me doing so (some sort of defence mechanism). Does anybody else feel the same way?

 

I know it sounds too simplistic, but if I could feel some guilt, and show my wife that I feel bad about the past, then we might be able to draw a line under the past and move on.

 

I've read quite a lot about lack of empathy etc, but cannot find much information on guilt. Has anyone got any views?

 

This is my first post, so i hope I haven't rambled on too much.

 

 

--------------------

 

Luigi

 

Stop the world I want to get off!

[bid]

Welcome to the forum, Luigi!

 

I don't know if you've seen my thread in General Discussion about my experience with my local mental health team regarding a dx for myself, but I sympathise with you!!

 

I understand that the National Autistic society has a list of private psychologists experienced in the field of adult ASD, so that might be something to explore if you do want a formal dx.

 

Not sure about the question of guilt...I need to think about that

 

Good luck, and keep posting!

 

Bid (AKA She Who Is Clinically Well-Dressed! )

Edited February 5, 2007 by bid

[krystaltps]

Hi Luigi, and welcome to the forum

I think perhaps from your wife's viewpoint the fact that you have accepted you have AS is a huge bonus. My parents have been married for over 30 years, and last year my eldest son was diagnosed with AS. With everything we have come to know about it, it is now painfully clear to all the family that my father also has it. He did once ask my mother if she thought he had AS, as so many of my son's problems he suffers from too. They discussed it, and it has never been mentioned again. My father's motto - bury your head in the sand - my mother always being left to pick up the pieces.

However, the rest of us all accept that he has AS, and it makes it easier to cope with his little foibles. I feel much closer to him now, as I understand him much better.

I wouldn't worry too much about not feeling guilt. It may come ( my son often has very delayed reactions to things, e.g. it took him over 6 months to realise, accept and begin to grieve for his great gran when she died), it may not.... but the most important thing is you have accepted your self-diagnosis. Well done. <'> <'> <'> to you and your wife.

[Luigi]

Welcome to the forum, Luigi!

 

I don't know if you've seen my thread in General Discussion about my experience with my local mental health team regarding a dx for myself, but I sympathise with you!!

 

I understand that the National Autistic society has a list of private psychologists experienced in the field of adult ASD, so that might be something to explore if you do want a formal dx.

 

Not sure about the question of guilt...I need to think about that

 

Good luck, and keep posting!

 

Bid (AKA She Who Is Clinically Well-Dressed! )

 

Hi Bid

 

Thanks for your reply. I've just read your thread, and it seems unbelievable that so many of us seem to go through the same problems when trying to get a dx.

 

I don't think anyone could diagnose me with AS if they only met me for an hour or so. I'm quite good at 'faking nt', even though I don't fake it deliberately. My Relate councillor only mentioned AS to me after about 10 sessions (i.e. after he had got to know me), so how could a complete stranger in a white coat make up his mind after only an hour in my company?

 

I'm not really sure if I would want to pursue a private dx or not. Perhaps I would. I'll need to think about that. If anyone knows of a private psychologist with AS experience in my area (Hull...or the Yorkshire area) then I might give it a go.

 

Thanks again Bid

[smiley]

Hi Luigi and welcome

 

Would you feel comfortable copying your post or showing your wife this thread?

 

Very well written <'>

[Luigi]

Hi Smiley,

 

To be honest, I have shared all these feelings (or lack of them) with my wife so she is aware of how I feel about the lack of guilt.

 

I had started to wonder whether my wife should join this forum in her own right and share her concerns with other partners of AS people. It would probably help her to be able to get things off her chest from time to time, but I don't think it would always be a good thing for us to see each others threads (depending on the subject).

 

I wonder whether there are any other AS and NT couples using the forum independantly?

 

I'll give it a bit more thought.

 

Thanks for your interest Smiley.

[Jill]

Hi Luigi! I think TheNeil paid for a private dx and he's a Yorkshire lad.

 

I'm not sure though, having read some of the threads on this site, whether a dx is worthwhile. Now I am probably talking out of my be-hind here as I am NT so what do I know? But it always seems quite an upsetting experience with lack of knowledge from the people doing the dx, plus a reluctance sometimes by people to subsequently accept the dx.

 

It really doesn't make a difference to who you are, although I do understand that having that piece of paper confirming it could help your peace of mind.

 

It's just that I don't think I've read one good report of the adult dx process so you will need to prepare yourself for a less than enjoyable experience should you decide to pursue this.

 

PS I think Smiley's got a point BTW. You've expressed yourself very well in this thread - perhaps if you wrote down for your wife how you feel that would help her to understand?

[Kathryn]

Hi again Luigi,

 

I'm here as the parent of an autistic child so I haven't any personal experience or advice to add.

 

Below are some links and books recommended by another member (nellie ) a while ago to somebody else. You and your wife might find something useful and relevant here:

 

WEBSITES

 

OAASIS Information Sheet - Information for the Partners of someone with AS

http://www.oaasis.co.uk/images/Information...tners_03-06.pdf

 

Tony Attwood - Workshop for Partners of People with Asperger?s Syndrome

http://www.autism.org.uk/content/1/c4/36/18/attwood2.pdf

 

Maxine Aston?s website

http://www.maxineaston.co.uk/

 

Gisela & Christopher Slater-Walker?s Website

http://www.asperger-marriage.info/

 

ASPIRES - Asperger Syndrome Partners & Individuals Resources Encouragement & Support

http://www.aspires-relationships.com/

 

BOOKS

 

Loving Mr Spock by Barbara Jacobs

 

Aspergers in Love: Couple Relationships and Family Affairs by Maxine Aston

 

The Other Half of Asperger Syndrome by Maxine Aston

 

An Asperger Marriage by Gisela & Christopher Slater- Walker

 

Asperger Syndrome and Long-Term Relationships by Ashley Stanford

 

Asperger Syndrome in the Family by Liane Holliday Willey

 

The Asperger Love Guide A Practical Guide for Adults with Asperger's Syndrome to Seeking, Establishing and Maintaining Successful Relationships by Genevieve Edmonds and Dean Worton

 

 

K x

[Luigi]

Hi again Luigi,

 

I'm here as the parent of an autistic child so I haven't any personal experience or advice to add.

 

Below are some links and books recommended by another member (nellie ) a while ago to somebody else. You and your wife might find something useful and relevant here:

 

WEBSITES

 

OAASIS Information Sheet - Information for the Partners of someone with AS

http://www.oaasis.co.uk/images/Information...tners_03-06.pdf

 

Tony Attwood - Workshop for Partners of People with Asperger?s Syndrome

http://www.autism.org.uk/content/1/c4/36/18/attwood2.pdf

 

Maxine Aston?s website

http://www.maxineaston.co.uk/

 

Gisela & Christopher Slater-Walker?s Website

http://www.asperger-marriage.info/

 

ASPIRES - Asperger Syndrome Partners & Individuals Resources Encouragement & Support

http://www.aspires-relationships.com/

 

BOOKS

 

Loving Mr Spock by Barbara Jacobs

 

Aspergers in Love: Couple Relationships and Family Affairs by Maxine Aston

 

The Other Half of Asperger Syndrome by Maxine Aston

 

An Asperger Marriage by Gisela & Christopher Slater- Walker

 

Asperger Syndrome and Long-Term Relationships by Ashley Stanford

 

Asperger Syndrome in the Family by Liane Holliday Willey

 

The Asperger Love Guide A Practical Guide for Adults with Asperger's Syndrome to Seeking, Establishing and Maintaining Successful Relationships by Genevieve Edmonds and Dean Worton

K x

 

Thanks Kathryn,

 

I really can't believe how kind and caring people are on this forum. It really has taken me aback.

 

Thank you for the above info. Some of it I have previously looked at, but some I wasn't aware of so I'd best get surfing.

[bid]

Hi again

 

I've been thinking about the question of guilt from my perspective as a (not quite diagnosed yet! ) Aspie-type person...

 

I think it is logical to feel guilt about things that you choose to do maliciously, etc.

 

But perhaps you don't feel guilty because you didn't choose to behave the way you did. You might feel sad or remorseful, because you hurt your wife, but that's not the same as feeling guilt because that implies that you deliberately set out to hurt her.

 

Don't know if I'm making any sense

 

Bid

Edited February 6, 2007 by bid

[Luigi]

Hi Bid,

 

When I read your reply last night, it really got me thinking. I'm not trying to get myself 'off the hook', but I do think you've got a point about me not choosing to hurt my wife.

 

Funnily enough, this morning I decided to tell my wife that I'd joined this forum. Since I made my first post a few days ago I felt as though I was doing something behind my wife's back, even though it wasn't anything to be ashamed of or destructive to our marriage. So I told her, and she thought the forum was a great idea.

 

I then told her about your thoughts regarding guilt, and without even thinking, she agreed 100%. Like you, she said that I hadn't chosen to hurt her (emotionally of course..not physically) and that quite recently she has come to realise and accept this. She also said that since I'd started to research AS rather than burying my head in the sand (say the last couple of months), I have been a much easier person to live with

 

So thanks very much for your thoughts on the subject. It prompted me to tell my wife about the forum and I feel much better about it.

[ellisisamazing]

Hi Luigi,

 

I have nothing to add really, sorry!! I am the Mother to an ASD son, so I can't really relate to your experiences, but I would like to say WELCOME!! This forum is really helpful and I hope you get a lot of answers from it!

 

Wishing both you and your Wife a positive future!!!

 

Lisa xx

[badonkadonk]

Hi Luigi,

 

I was diagnosed AS just over a year ago aged 22. I went through the NHS but had to get a list of specialists who could diagnose adults from Autism West Midlands as I was told by my doctor that no one in Staffordshire was able to diagnose adults (an absolute lie I've since found out). It wasn't all that bad for me I must say. I had 2 appointments and was diagnosed on the second, but this doesn't seem to be the process with a lot of other people. It was only traumatic in a way simply because I had to meet new people and talk about myself, but that's only because I'm Aspergers.

 

I think I had a slightly more positive experience because at the time of diagnosis I knew very little about Aspergers. I didn't go in there expecting anything in a way and didn't expect to be offered further help and advice because at that point I didn't know there was any available (there should be help available, like Cognitive Behaviour Therapy for overcoming stress and anxiety etc but as a lot of us have found on here it's not very forthcoming and difficult to find someone who understands our needs). I had spent the last few years though trying to accept the fact that I was probably mentally insane because everyone kept telling me I just had an attitude problem that I needed to fix and that it was all my fault, whereas I knew my different behaviour and thoughts were not something I chose to do (if you get what I mean). The fact that someone was giving me a piece of paper with a formal diagnosis of Aspergers was a hugely positive thing for me because it stuck two fingers up at everyone else who thought I was just badly behaved and put at ease my fears that I was going insane.

 

The ways in which the diagnosis hasn't helped: what the diagnosis didn't do was tell me what Aspergers is. It's only when I've trawled the internet, read books and spoken to people that I have begun to fully understand myself and my different needs. Understanding what causes me to feel anxious, agitated, upset and feel angry has helped enormously because now I have been able to put coping mechanisms into place. Recognising what parts of communicating I struggle with (jokes, sarcasm, people saying things they don't mean) and understanding why I feel so awkward in social situations has helped me not put so my pressure on myself to interact like everyone else and be at the same level. Now I'm much more happy to just sit back and let others talk and just try to relax at these times. By never stopping in trying to find out more information about Aspergers you can constantly further your understanding of yourself. I would reccomend that even if you don't pursue the diagnosis process that you do lots and lots of research because it's amazing how the pieces start falling into place. (The biggest discovery I made was sensory overloading....it makes so much sense now!) If you can I would suggest that you do this with your wife if you can get her involved. It saves you from having relate information back to her and by going through the discovery process together she might recognise things that you could miss. But more importantly both of you will come to a better understanding about Aspergers and hopefully be able to make some positive changes to how you approach your lives so that a better quality of life is achieved for both of you.

 

The ways in which the diagnosis has helped: It helped with getting help at university and in the work place. I got access to Remploy in my last job who helped me put targets in place and for other members of staff to get a better understanding of me. It still didn't work out because I was working as a chamber maid and couldn't not be a perfectionist, but in doing so I couldn't get my rooms finished on time. Anyway waiving the piece of paper at these times can help. It also helps when I go to music concerts because I can now sit in the disabled area which has been a massive help to me. I freak out sitting close to strangers and I get overloaded by the noise, the lights, the different smells and sights so sitting in a more secluded area has certainly helped lessen the panic attacks and meltdowns. I've also used it when flying to ensure that when checking in, if it possible to do so, that they sit me in a window seat and without children directly in the seat behind or in front or next to me. If me and my boyfriend go away we go when it's not school holidays anyway so this makes it easier. I know it might seem like I'm making unreasonable demands of them, but I only ask if it's possible and they have always been totally understanding so far. I take ear plugs just incase but it makes the flight 100% more bearable if I don't have the noise that kids make directly in sort of my personal space circle. Nothing against kids I just have mega sensitive ears and flying is claustraphobic and noisy enough without me feeling overwhelmed by the kid who is kicking the back of my chair and arguing with his sister about who gets to play on the DS first It also helps at doctors appointments or when I go to the hairdressers because I flash my Autism Alert card and then I don't get expected to shake hands or make eye contact, a huge bonus! It also helps in places like big hotels because I book in advance and mention Aspergers and ask for either an end room (so I only have noise from one side) and a room on one of the higher floors because the thudding of people walking around above can stress me out. Obviously I don't start demanding the suites and stuff because they are usually on the top floor, but the higher the better. Also restaurants, again if I book in advance and mention Aspergers I can get a corner table because I hate sitting with people behind me.

 

So really the diagnosis hasn't helped in terms of understanding myself and Aspergers. But being diagnosed and getting an official piece of paper (and joining the National Autistic Society and getting the Autism Alert card) has helped to get society to better adapt to my needs without asking for too much or causing a big fuss. It doesn't necessarily mean that people know what AS is or that it is a positive experience 100% of the time but I've found that if anything because people are ashamed that they don't know what Aspergers is, and because of the myths surrounding Autism, that they overcompensate and help all they can! I don't take the mickey and a lot of this stuff while it might seem like perks actually isn't, it's just small adjustments. I'm not asking for the best seats in the house, upgrades to first class on flights or suites in hotels. I'm just asking for understanding and a little bit of adapting.

 

Hope this helps, sorry for the ramble!

 

Emily

xxx

[Luigi]

Hi Emily,

 

The more I think about it, the more I think I would like to get a dx. I know what you mean...it's not like I'd want to wave it around for special treatment, or for people to feel sorry for me. I just know that sometime in the future I will have to explain my behaviour to somebody (perhaps a friend or a work colleage) and at least I would have the option to prove to them that I am AS if I wanted to. I think I am probably not very far down the spectrum (perhaps borderline) and I have already had close family refusing to accept that I have AS. It has caused some family problems.

 

My concern is that, because I think I am borderline, a private dx might come back negative. That would upset me more than a positive dx of AS.

 

You made an interesting point about the social side of things. I've always yearned to be able to be just like the outgoing people you see at parties. They get on the dance floor and throw themselves around, totally letting themselves go. I like to dance at parties, but am much more conservative. I have the same dance for every different style of music. My feet kind of shuffle from side to side, whilst my arms are glued to my side. But recently I've started to adopt your kind of thinking. I've stopped putting pressure on myself to be outgoing. It's not my style, so why strive for it. It's never going to happen. I'm quite happy now letting others strut their stuff, or dominate a conversation. I'll shuffle my feet, or chip in with an occasional conversation and that's fine. No pressure.

 

Sensory overload isn't really a big problem to me, but it looks like you have tackled it head on. Having the intelligence and confidence to 'ask for a corner table at a restaurant', for example, is a real positive step and you seem to be doing everything you can to make life a little less stressful. I admire you for that.

 

By the way, I checked out your blog. Last year we also went to Florida and Chester Zoo. Both were great.

 

I thought your post was really interesting and well written. You have a relaxed style of writing and I enjoyed reading it.

 

Thanks.