So Where Do I Go Now?

[TheNeil]

Hi,

 

I'm new here (have posted in the 'Introductions' thread though) and I could do with some advice/guidance. I'm (very) recently diagnosed with Asperger's and, at 31, it's kind of thrown my little world in confusion. My wife and I both knew what I was AS, both knew what it meant to be AS but now that we've got the diagnosis we wanted...what do we do now?

 

That's kind of a general question but do I have to register anywhere? Do I have to inform anyone (I'll be off to see my GP when the written report gets mailed to me, and I have told the firm that I work for...but is there anyone else)?

 

At the moment I'm kind of a bit lost and don't know what to do, and this hasn't been helped by the reaction that I've had from everyone I've told. My family have played it down and practically accused me of being a hypocondriac (or have treated me like a 4 year old and, metaphorically, patted me on the head and said "There, there dear - you run along and play") and most other people who I've mentioned it to have kind of belittled AS when I've tried to explain what it means (usually with the response "Oh I do that" etc. etc. etc.) or just responded with "Well you're the same that you were before" - well that's true but I've always been 'wierd'. I don't feel as though anyone is taking this seriously enough or, more importantly, taking the time to ask me about it or take the time to find out what I am (i.e. AS is) (work, for example, have arranged things with HR, Health and Safety etc. but have never actually asked me what it means, what they could do to help etc.)

[nellie]

Hello again,

 

I think what you're experiencing is perfectly normal. Most people don't have the knowledge or understanding of what AS is and it can appear that family and friends don't care, actually sometimes they really don't!!!! It can be quite isolating and it times it can be more comfortable being around people who understand AS.

 

 

Take your time it's early days, although I can understand your desire to rush things after all these years. As a wife of someone with AS, I found life just gets better and better after the diagnosis. Some people don't need a label but my husband needed the 'rubber stamp' to move on.

 

This information is from the NAS, hope it helps.

 

Information for people with an autistic spectrum disorder

http://www.nas.org.uk/nas/jsp/polopoly.jsp?d=119

 

Nellie xx

[oracle]

Hi Neil,

 

This is really a reply to your last post made in Introductions. Believe me it is not any easier to have a child dx'd. It took me ten years to have David diagnosed and before the final dx of AS we were told he had an Oedipus complex which made him attempt suicide at the age of 12 The system stinks that's for sure.

 

The thing to concentrate on now is that you have the dx - you now have a name to put to your condition and you can move forward from this point on You have a very supportive wife and that really is good news so you already have a great deal going for you. Your family may never accept the dx but that is their problem and not yours. My ex is still in denial that his son has AS and for a few years it really upset David but now he knows that it's his Dad who has the problem and not him I tried giving him lots of info on AS but he never read it so I stopped talking about it. In the grand plan of things if others chose to be blind then let them get on with it.

 

You will get support and understanding here we are a smashing extended family

 

Oracle

[Bullet]

I strongly believe I have Aspergers myself. It's not just down to a feeling of not fitting in, it's a continuous string of things going back to my childhood and finding out that my dad and some paediatricians wanted me assessed, that my mum knew I was different but didn't know how and didn't want me singled out and that the headteacher at my primary school had also expressed general concerns. The trouble is is that I am very quiet in real life and rarely draw attention to myself in public, handling difficult situations by shutting myself away and academically I'm quite bright. Ironically this has had the effect of people thinking everything is fine with me. Even DH (who had noticed things about me but had never connected them to AS) was not aware for example that sometimes I hear someone talking but I can't make sense of the words, or that too many items in a shop makes me feel stressed and overloaded. In the end I had to write down all the little quirks I have, all the little habits I do and things I think and tell him to read it. This was two days ago and we've been together for 12 years. I said I was rubbish at communicating .

I am torn about getting a diagnosis. I would like one but due to the NHS's limited resources I feel it would be hard to justify getting one purely on the basis of needing to KNOW for my own peace of mind. I'm not going to claim DLA as I feel that as I've sort of muddled my way through (albeit by keeping to a strict timetable most days) I couldn't personally justify it.

[TheNeil]

Thanks people -I've been questioning my sanity ever so much since getting the rubber stamp that I had begun to wonder if it was worth all the hassle it took to get the rubber stamp

 

And you're right, it is early days but I think we'd built ourselves up to getting the diagnosis...and hadn't thought about what would happen afterwards. I think I'd assumed that every one I told would be understanding - guess that re-inforces the fact that I can't read people's emotions or intentions at all. With having felt isolated and lonely for most of my life I think I was hoping that this would be a way for people to accept me a bit more. Maybe they will or maybe they won't but at least I know that it isn't something that I've (consciously) done. At the moment I'm obviously in a period of transition and I've got to get my head around the whole situation but I think I was just getting a bit worried and starting to have doubts etc. I'll get there but it'll just take time (and you're right Oracle, it's other people's problems if they can't accept/understand it)

 

Bullet:

Forget what 'strain' you think you might put on the NHS and be selfish (it might be difficult to think this way but sometimes you have to get yourself angry and just go for it). If you feel that you want a diagnosis then go for it - I only pushed for a diagnosis for my own peace of mind (there was certainly no intention of claiming benefits or getting any sort of support from the state - like you I've 'muddled through'). It sounds to me as though a lot of people have noticed something 'different' about you through the years and you should maybe use this as a reason for asking the question 'Am I AS? If not, what am I?'. I was like you (to a certain degree - my parents simply assumed that all kids were 'wierd' like me) in that I had lots of 'little things' that, individually, seem almost trivial but, when taken as a whole, suddenly seem to mean something. I'm a quiet person and don't like drawing attention to myself. I can't make small talk and get panicky in crowds and group situations, and my brain shuts down if I'm in a team meeting at work and more than one conversation is going on (end result being that I understand nothing). I also find it easier to communicate by writing things down (as opposed to speaking) as, for me, it gives me chance to think about what I'm saying, re-word it, edit it etc. We're all different (even if we do all come under the ASD label) but if you're convinced that you're AS (and I would advise going to the NAS - it really does have lots of useful info) then please take the first step and go and see your GP. Do what I did and go prepared with printed details etc.

 

I might sound as though I'm having a tough time of it at the moment but I'm kind of on the cusp of a new world and I'm still adjusting. Besides which before the diagnosis I was driving myself mad trying to work out what was/wasn't 'normal', questioning everything I did etc. Other people might be having a hard time understanding what I am but I know and that's been a big boost for me. Yes it's 'only' peace of mind but it does make a big difference (I feel more confident and focused in my own head - almost "Say and think what you like suckers, but I know what I am so you can't make me feel bad for not conforming to your version of 'normal'"). I don't claim to know it all (ha, as if) but it does sound as though I'm a little further down the same path as you so if you want any help, please, please, please don't hesitate to either post a question or just PM me. Besides which, from what I've seen here in the 3 hours I've been a member, this is a great community that I'm already feeling proud to be part of and really do want to contribute and help as much as I can

Edited April 27, 2006 by TheNeil

[redberry]

Hi,

 

no words of wisdom from me ( ) but a welcome to the forum.

 

My dad is a self diagnosed Aspie and my husband has rich seams!

My 8 year old son was diagnosed in feb and this place is helping through the roller coaster ride of emotions.

 

Be well

 

redberry

[Bagpuss]

Hi,

 

I wish I had a penny for everytime we were told by family etc that our daughter was just strong willed, that of course she couldn't be autistic....she speaks...autistic children don't speak do they....

Her diagnosis was played down...oh shes just like you at that age.....

Very irritating, to have a huge impact on your life dismissed.

Hope everything goes well for you and you find the support, help and advice you are searching for. I do think a definate diagnosis is better for you in the long run.

 

Take care,

 

Debs

[bid]

Hi again

 

I've had all the same responses from my family and some friends when I told them that I had been referred

 

Do you think MrsTN might pop in here at all??

 

Bid

[TheNeil]

Do you think MrsTN might pop in here at all??

 

Possible but unlikely - all this 'internet thing' kind of confuses her (as does the TV, the toaster, double sided sticky tape...)

[Flora]

TN

 

Welcome to the forum <'>

 

I'm going to say congratulations for getting your dx. Some might think it strange, but there are so many people who go through life undiagnosed with not a hope of getting there. It must be very frustrating for you getting the various negative responses when you have been brave enough to tell people. I brought the subject up with my mother last week and for the first time ever she admitted that she thinks I may have AS; she has started to see huge similarities between AS son and me when I was that age.

 

I hope that evenutally you find away of communicating your dx to the people that matter, in a way that makes them understanding and accepting.

 

You have certainly stumbled upon the right forum, and will find lots of good advice here.

 

Take care

 

Lauren

[Flora]

TN

 

Welcome to the forum <'>

 

I'm going to say congratulations for getting your dx. Some might think it strange, but there are so many people who go through life undiagnosed with not a hope of getting there. It must be very frustrating for you getting the various negative responses when you have been brave enough to tell people. I brought the subject up with my mother last week and for the first time ever she admitted that she thinks I may have AS; she has started to see huge similarities between AS son and me when I was that age.

 

I hope that evenutally you find away of communicating your dx to the people that matter, in a way that makes them understanding and accepting.

 

You have certainly stumbled upon the right forum, and will find lots of good advice here.

 

Take care

 

Lauren

[TheNeil]

I wish I had a penny for everytime we were told by family etc that our daughter was just strong willed, that of course she couldn't be autistic....she speaks...autistic children don't speak do they....

Her diagnosis was played down...oh shes just like you at that age.....

 

The first person I ever mentioned this to (aside from Mrs TheNeil) said (and I quote) "But you're nothing like Dustin Hoffman [in Rain Man]". Gee, thanks for that

 

Sadly everyone (that I've come across - please tell me I've just been unlucky) seems to assume that if you mention the dreaded Autism (I won't even begin to imagine the blank expressions that would come back if AS or ASDs were mentioned) then you must sit in a chair rocking back and forth and dribbling, totally unable to speak, understand or hear anything. Similarly you're unable to dress yourself, be allowed out with a 'grown up' or eat solid food - it's frustrating to say the least (although it would explain why people seem to be unable to grasp the fact that someone can have an ASD)

[Bullet]

Just wanted to say thanks for the reply to my post TheNeil. My oldest lad has just been diagnosed with ASD (he seems to be more on the spectrum than me) so at least as there's believed to be a genetic link I stand more chance of being believed. Like you I do find it very hard to talk to people in real life (the ball started rolling for Ds1 when I wrote down my fears and gave them to his health visitor and it turned out she had concerns as well) which is probably one of the reasons I've not asked.

[TheNeil]

Just wanted to say thanks for the reply to my post TheNeil. My oldest lad has just been diagnosed with ASD (he seems to be more on the spectrum than me) so at least as there's believed to be a genetic link I stand more chance of being believed. Like you I do find it very hard to talk to people in real life (the ball started rolling for Ds1 when I wrote down my fears and gave them to his health visitor and it turned out she had concerns as well) which is probably one of the reasons I've not asked.

 

At the end of the day the decision has to be yours but I've found that a diagnosis really has helped me. In my case I'm the first person in my family to be diagnosed or even considered to have anything like this, although having to listened to what the psychologist had to say, there does seem to be a link back to my dad and then back to his mother - the genetic link certainly seems to be a reasonable line of thinking.

 

I can understand where you're coming from when it comes to you believing whether people will believe you or not ("Am I imagining it or is there really something there?") and I certainly found myself questioning pretty much everything and anything (nearly drove myself mad in the process but...). In my case Mrs TheNeil was very supportive but I found that reading as much as possible and taking some of the online tests really helped to convince me and just give me that little extra bit of confidence to allow me to take the first step. The fact that your eldest lad has been diagnosed with an ASD should only lend weight to your argument, and you never know, if he knows that his mum is in the same (or similar) situation it might make things easier for him (now or the future) as he'll know that he's not alone, has someone he can talk to who understands what's he's going through etc. (I'm speculating here though as I don't have kids)

 

I don't know what your family setup is (and I'm not trying to pry) but if you have someone else who believes in you then I found that it became a lot easier. If you can't do this (for whatever reason) then keep writing it down and listing which traits you have, what makes you think that you do/don't have AS (as well as noting, if possible, where you found the info - so that you don't start thinking that "Well, maybe I just imagined that") - you can then keep going back to the list and re-assuring yourself that "Yes, I do have all of those traits"

 

From personal experience I found the NHS to be very frustrating but that could be down to where I live, no previous family history etc. Even if it is going to take a long time, it's going to take even longer if you don't make that first step (God I' starting to sound like my mother now)

 

I don't know how many other adult aspies there are on the forum who can share their experiences but from what I've seen so far, there's plenty of people here who are more than willing and able to offer help, advice and support (BTW I'm not trying to withdraw from this but at the same time I don't want to come across as being dictatorial - anyone care to help me out on this one? )

[Zemanski]

Hi TheNeil

 

There are many people here who are in, or have been in, situations similar to yours and each takes their own decision as to whether or not diagnosis is for them, but we're happy to hear anyone's take on things, especially someone on the spectrum - people's views and insights are useful and help people make their decisions informed ones they are very much appreciated

 

relax and have a look around - there are plenty of ideas to mull over and all sorts of people to meet; parents, professionals, AS and autistic people.

 

take care

 

Zemanski