• Replies 11 replies
  • Subscribers 79 subscribers
  • Views 4139 views
  • Users 0 members are here
Options
Related
Hints and tips
  • To quote someone's message, first select/highlight the relevant text, and then use the Quote button that appears
  • To "mention" someone, type @ followed by the start of the forum name, and choose from the list; that person will get a notification of being mentioned

Damned if you do.......damned if you don't

JDW

Hi,

As someone who has been recently diagnosed with Asperger's Syndrome and who has subsequently recieved answers to a great many questions as a result I would like to know how other people with AS status cope long term. I am finding that whilst the diagnosis has been welcome very little in life has changed for me and I feel as isolated and misunderstood as I have always felt. My partner who tries to understand is often the reason for my anxiety, she may be the centre of my universe her apparent intolerence is often a source of stress for me.

I find if I withdraw from conversations my wife complains and when I try and often fail to engage in conversation I am accused of being rude or insensitive. I find my partners inconsistent approach to the rules of the house and the way she expects me to just cope with it is provong very taxing. It is very difficult as she is very understanding in so many ways but I guess her resentment of my condition runs deep.

My preferred approach is to withdraw from conversation completley, I can happily go hours even days without talking to anyone so pitching in to conversations often fills me with dread. I usually say something deemed inappropriate or more than likely insensitive. 

Does anyone feel that trying to esatblish a identity for yourself as someone with autism is important. I do not want to let my AS limit or define who I am but believe firmly that I should respect it and acknowledge it is a big part of who I am and as such should be recognised. I only wish others would recognise it too.

Thank you

  • Thanks so much, You are so right. I do know im the centre of his universe (this has sometimes caused difficulties with his dad) but sometimes you do forget that you are, especialy when it all seems to be backlash at times.

    Thankfully I now have this site and can ask about his behaviours if I cant seperate 'teenage' from 'AS'

    Cheers

    Sam

    x

  • Well people with AS do sometimes feel isolated and alone and perhaps your son wants to feel 'normal' and do what normal people do but as I said never forget you are the centre of his universe and whilst that is often a double edged sword he will always want to please you. The downside is you will always get the downside and the backlash when things go wrong because he trusts you and you have provided him and outlet for him to himself, in a world that really doesn't care it is his safe haven.

    Goodluck

  • There are few benefits to being an middle aged adult with AS but experience is one of them. I have been a child and a teenager with AS so I do get it which, I have found, most people don't. 

    The line between where a NT child ends and an AS child begins is very blurred and as such many spoilt badly behaved children get given the excuse that they have ADHD for instance (nearly always diagnosed by their parents to make up for their bad job at parenting). 

    As an AS adult with children on the spectrum I can usually tell what problems are AS related and what is a child/teenager being stroppy. Sadly NT people will always struggle to do this.

  • Hi all,

    Thanks a lot for your replies. I will try and think of other things he can do to help, I didnt realise it was him needing to help I thought it was him feeling left out when his siblings were doing things.

    I will also try and ignor it when he doesnt look happy and just give him the time to complete the chore, maybe he looks unhappy to me just because he is thinking it through and I should just wait it out? He is very poor at asking for help though and I hate to see him struggle.

    It is hard sorting out what is teenage behaviour and what is through his AS for us parents of teens! What we should be helping with and whats best left alone.

    Thanks again

    Sam

    x

  • Oh this sounds all too farmiliar.

    I loved your final answer to SamF though - brilliant

    Explains my situation now, really well.

    I can't give you many answers as I'm finding this problematic as well.

     

    I stuggle with ASD + being a teenager.

     

    On most days (especially recently) I am more Autistic and OCD-wise.

    When I try to be a "teenager" - my mum doesn't like the stroppyness, waking late etc but she hates it even more when i go in overdrive.

     

    Sorry not been much help, though you have been to me.

     

    Remember that,                                                                                      urspecial.

  • Hi,

    The issue could be one of several things to be honest. Perhaps deep down he wants to help, it is a very strong driving force for many of us on the spectrum, if he feels that you do not want his help he may take that as rejection and react negatively as you describe. I'm sure you understand by now that your good intentions mean very little to someone on AS as we struggle to pick up on the bigger picture you are trying to help us with and we often react poorly to being told what to do on such occasions as we fail to see the point. 

    We on the spectrum often are gulity of blaming others for pretty much everything really as it is often hard to look introspectively but I would imagine you know that by now. It is important to understand that yor son may have planned out his actions in minute detail and your attempts at helping him may have thrown those plans off track which often causes reactions like the one you have described.

    You spoke of your son not looking happy but often we are happy but our face rarely shows it, I am often told about this by my long suffering wife. 

    Lastly please never underestimate his need to please you and he will do anything he can to please you and even though it may take twice as long it will mean a lot to him if you can accommodate him in a safe way.

    Hope it helps and ask whatever you like.

  • Hi,

    The issue could be one of several things to be honest. Perhaps deep down he wants to help, it is a very strong driving force for many of us on the spectrum, if he feels that you do not want his help he may take that as rejection and react negatively as you describe. I'm sure you understand by now that your good intentions mean very little to someone on AS as we struggle to pick up on the bigger picture you are trying to help us with and we often react poorly to being told what to do on such occasions as we fail to see the point. 

    We on the spectrum often are gulity of blaming others for pretty much everything really as it is often hard to look introspectively but I would imagine you know that by now. It is important to understand that yor son may have planned out his actions in minute detail and your attempts at helping him may have thrown those plans off track which often causes reactions like the one you have described.

    You spoke of your son not looking happy but often we are happy but our face rarely shows it, I am often told about this by my long suffering wife. 

    Lastly please never underestimate his need to please you and he will do anything he can to please you and even though it may take twice as long it will mean a lot to him if you can accommodate him in a safe way.

    Hope it helps and ask whatever you like.

  • Hi,

    Hope you dont mind me asking, Whats the biggest issue for you ? is it inconsistancy? The reason I ask this is because I seem to keep making the same mistake with my son and you may be able to tell me why. My son often wants to join in with things like helping with dinner preperations like his younger siblings do for example . (he is nearly 17 and newly diagnosed) He also has physical problems that means cooking is vey unsafe and he can't carry alot so my normal answer is that he can set the dinner table. This is usualy ok but occasionaly he stomps of with the cutlary and looks very angry like he doesnt want to do this, and I worry he is going to melt down so I quickly say "dont worry about it I will do it". However this seems to be a very wrong thing to do because he then gets extremly angry shouting out that "Im doing it." So I then try to explain saying  "its just you dont look very happy about it so Im just saying you dont have to do it if you don't want to do it" and he shouts back  "Im fine its you, you keep changing your mind so I dont know what you want me to do."   Its not that Ive changed my mind I was just trying to make it easier for him. Does any of that make sence to you.

    Thanks

    Sam

    x

  • It is encouraging that I am not alone in many of these issues I discuss on here and I thank you and all the other people who contribute on these pages. 

    My wife and I have many heart to heart conversations regarding my diagnosis and the way my diagnosis and autism affects both our lives. I think as long as we continue to have this line of communication we should be ok although my wife admits the lack of emotional input on my part is challenging. 

    My counsellor was saying similar things about AS not being a mental health issue but in the light of so much ignorance it is hard to navigate through the world when so much of your life is affected. My counsellor is constantly highlighting ways in which AS is affecting my life, at least I know now I am not clumsy through sheer stupidity or that I am weak because I have never been able to master swimming. Yes my handwriting is and always has been terrible but I know why now which helps.

    I find institutions set up to help are often the worst culprits as far as lacking in understanding is concerned. I have to see the Camden Society (an organisation set up and contracted to the DWP to help vulnerable adults into work) they often ring up one day and espect me to attend the next despite apparently realising that this is precisely the wrong approach to take with some one with autism. I spent one uncomfortable hour on my first visit with an advisor who spent the entire time trying to force me to look at her. I was very disturbed afterwards and my wife rang them up and read them the riot act and things changed for awhile but she tangles with them again last week for their lack of planning.

    Well thank you again.

  • Inconsistency is a severe problem for me. So much confusion has happened over people acting differently towards me from one day to the next. It does my head in. I do agree that there needs to be more awareness that ASD is not a mental health issue and there should certainly be more awareness of it given to NTs. To the original poster, its always hard coping with being diagnosed, and especially so at an adult age. I was diagnosed at eight years of age but I've always struggled with communicating with others and trying to be social. It's never easy but I think with time it can improve. I'm certainly at least more socially active or aware than I was five years ago. Maybe you should sit down with your partner/family and have a frank discussion from the heart? In my experience, that can be very beneficial

  • I find your description of NT family members behaviour very familiar. There is often a real inconsistency.

    I have tried to tape as many TV programmes about people with ASDs as I can and show them to my family. Unfortunately most of them are about kids, and these kids have had an early diagnosis and so seem a lot more open and relaxed than adults who have had a late diagnosis. I have also tried to get them to read books, such as "The Complete Guide to Aspergers Syndrome". My main problem was to get them to understand that an ASD is not a mental health issue which can be solved and "controlled". Instead my behaviour is ME, and if I can't be ME then I will really suffer, as working hard to be like an NT is very very tiring mentally.

    I embrace being a person with an ASD. If someone says you are being insensitive, ask them why it is, so that you can learn and not repeat the insensitivity (if there is one, sometimes there isn't). If they know you have an ASD I think this is an OK thing to ask, especially within a family. I have found this to work, and over time it has made a difference as there are far fewer misunderstandings because it has become a way of understanding each other.

    I realise this might not work for everyone.