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bomu samba

Is it worth pushing for a diagnosis?

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Hi everyone,

 

I'm 33 and in the last year have begun to realise I may have Asperger's Syndrome. I've started to investigate and am recognising more and more of myself with each new thing I read. I even did that "Aspie Quiz" online and got an Aspie score of 167/200.

 

I told my doc that I thought I had AS a couple of months ago. He said I was depressed and put me on a waiting list for counselling. He also said it was extremely doubtful that I have AS as i have been able to hold down a job and have made friends. He thinks that even if I do have traits they are so mild i shouldn't care. But I do care. I'm anxious, exhausted and lonely and if I don't find effective ways to deal with this I'm going to continue having breakdowns. None of the counselling I've had in the past has worked as it has been very short term and isn't really focused on the right thing.

 

Now I'm wondering if it's worth pushing for an official diagnosis. A quick search on this forum has revealed some horror stories and given that NHS services are being cut left, right and centre, I know it would be hard work. Ultimately, it's my choice as to whether to push for a diagnostic assessment, but I'm interested in how having/not having one has impacted on others out there. So I was wondering...

 

...Are there resources I can access without an official diagnosis?

 

And a question for anyone that has an official diagnosis - how much of a difference did it make to your life? Did it help you access support? Provide greater understanding for you and those you shared it with? Or have you found that nothing's changed?

 

Thanks for your help!

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Hi Bomu Samab, welcome to the forum first of all.

 

Also thank you for spending the time looking at other posts and acknowledging there is a mix of views out there. I have answered similar posts in the past and so do not want to neccessarily repeat myself over and over.

 

In response has getting a diagnosis changed anything, I would say that depends on how you look at things. In respect to access to resources no, I still have no access to any resources so no change there, but thats not why I sought out a diagnosis. The way I see things is that only thing in life that we can confidently claim to change is ourself. We can not change who we basically are but we might be able to change some of the important things which might impact negativly on our lives. To make changes we need to be motivated and prepared to work hard. If my diagnosis did anything for me it helped me to understand who I basically was and as such allowed me to put some realistic personal expectations into my life. To be honest I came to this conclusion regarding my own condition from a personal perspective and was happy with my self diagnosis. It was only when a medical professional came along and challanged that self perception that I felt compelled to get a definative answer.

 

As such I would say is do you feel you are capable of drawing some strong conclusions about yourself with which you would be happy to work with in developing aspects of your life? If the answer is yes then my gut reaction would be stay clear of a formal diagnositic proccess, not because it will be complex and messy, but because it might be.

 

Whatever conclusions you come to Bomu Samba you have to be comfortable with them and see them as a platform from which to work on self development, that means finding a productive lifesyle, dealing with depression and anxiety and bringing stability into your life. All these things require motivation and a level of energy to work at things. Spending a limited source of energy in the pursuit of a label which brings with it little in the way of support might not be the best use of what may be limited personal emotional and physical resources at this point in you rlife.

 

Hope this makes some sense, best wishes.

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Hello, I am new here. Bomu, I obtained a diagnosis at last a few weeks ago. I can say that it's quite life changing. It's scary to know this is a life-sentence, but then whatever it was called that made me different, I pretty much knew that anyway! But a life sentence is not a death sentence. The positive thing is huge: I KNOW WHY I'M DIFFERENT, and it's NOT MY FAULT! I have carried a lot of guilt around with me thinking it was something in me that I could control or that I was doing wrong, and I have carried anger about things done to me psychologically when I was young in case that was what damaged me. Although the latter may have some truth, the main thing is I know it's not my fault, it's how I was born, and now I can take stock and work out how to get on with my life, armed with the knowledge that I have Asperger's, I am not crazy, I am just like thousands of others who just have a different way of seeing the world.

 

As to accessing help, I have one or two leads, but have yet to work on that which is something I need to do soon.

 

My view is find out what's ailing you, cos in this case ignorance is not bliss, though the truth takes some getting used to! Good luck.

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Hello, and welcome to the forum.

 

There are actually very few formal support services for people with a diagnosis of Asperger's. So if it's support services you're hoping for, then a diagnosis may not help anyway.

 

There are several support/social groups around run by organisations like the NAS. I don't know where they stand on accepting attendees without diagnosis, but I would have thought that given the difficulties with accessing diagnosis, they would not have a problem with you attending without a diagnosis. I've been to two run by the NAS, and neither of them ever asked for any proof of my diagnosis anyway.

 

A diagnosis might help mental health professionals have a better understanding of the causes of your difficulties, and find more effective counselling/therapy techniques. But many mental health professionals have so little idea about Asperger's that it might not help anyway. Since getting my diagnosis I did see a therapist with a good knowledge of Asperger's who helped me a great deal. But I also saw one who said I didn't have Asperger's because only boys get it. So a diagnosis may not help here either.

 

The things that have helped me the most are the things I have done myself. Meeting others with Asperger's online and in person, sharing tips and suggestions, and sometimes just some understanding and sympathy. Reading books about Asperger's, thinking about what difficulties I have, and finding techniques to help with those. You don't need a formal diagnosis for any of those things.

 

In terms of other people, I think it has helped improve my relationship with my mum now that she understand I'm not being deliberately awkward. She's also read up on things and will tell me when I'm going on too much about something and annoying her. Although it's occasionally hurtful to be told this, it does mean I stop before she gets really annoyed and shouts at me, which would be more hurtful. It's hard for my mum because she's not naturally very assertive, but understanding Asperger's has helped her be more frank with me and that's (mostly) a good thing.

 

My mum used to be a teacher, and she thought she knew all about Asperger's because she was given some factsheets about teaching students with Asperger's. It said they would be disruptive in class and shout out a lot. I am not like this and am very shy and quiet, so when I first mentioned Asperger's to her she didn't believe it. The formal diagnosis was a massive factor in her accepting I have AS and reading up on it. Another factor was attending an event with me where she met a large number of adults with Asperger's, several of whom were a lot like me, and that helped her see that I fit in with this diagnosis. I don't think she would have attended the event before my diagnosis. But who knows, maybe she would eventually have come around to the idea if I'd not got the diagnosis.

 

For me, the biggest impact the diagnosis has had is that I understand the causes of my difficulties now. For such a long time I've believed I was just lazy and that was why I couldn't manage normal situations. In school I was told I was being deliberately awkward and in therapy I was told I am being non-co-operative, all without understanding why. I have a lot of difficulty making friends and thought it must be because I am horrible. The diagnosis has helped me understand that I'm not being deliberately anything, I have a genuine problem that makes it look this way. The AS makes me look uninterested in people and that's why they don't warm to me. I'm not horrible, I'm just different. From there, I have started to work out where I'm going wrong to give off the impression I do. I'm a long way off being life and soul of the party, but I don't give off quite so much "I don't want to know you" vibes any more.

 

I probably could have come to these conclusions without a formal diagnosis, but getting it official sped up the process.

 

A formal diagnosis can reveal difficulties you weren't aware of. You will be aware of what you find hard, but you may be less aware of how you come across to others. A trusted friend or relative may be able to help you out with this as well though.

 

My diagnosis has led to a lot of changes, mostly for the better. But I don't think a diagnosis was necessary for anything that's happened, it's just sped up the process, and others are more likely to believe a formal diagnosis over suspicion.

 

A diagnostic assessment can also provide documented evidence of your difficulties, if you ever need to ask for adjustments in the workplace or benefits.

 

Personally, I think that since you are having quite severe mental health problems, it would be worth pursuing a formal diagnosis to help you access more suitable treatments. That's only my opinion though, you have to decide whether the stress of seeking assessment is something you can cope with.

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i would say it is worth pushing for a diagnosis, mainly because you cant get fired from your job for something thats not your fault. and you get certain advantges with certain things lol garanteed job interview, dla etc. so i would get a diagnosis on those things alone, but more than all of that welcome!

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Whatever conclusions you come to Bomu Samba you have to be comfortable with them and see them as a platform from which to work on self development, that means finding a productive lifesyle, dealing with depression and anxiety and bringing stability into your life.

This is something that's very important to me. Part of the reason I'm thinking of going for the diagnosis is that it may help me pin-point particular areas for development.

 

I can totally relate to Joe's feelings of guilt as well. I have always tried so hard to fit in and appear "normal" and could never understand why it didn't work properly. I just figured it was my fault.

 

Tally - thanks for the info about resources and also for sharing your experiences with mental health services too. I'm still waiting to hear back about counselling but I think I might be ready to broach the subject of AS when I finally get to the top of the waiting list.

 

I hadn't even thought about the possibility of protection at work. Mind you, my work place isn't that good at making adjustments for other disabilities so I don't know how comfortable I'd be disclosing to them...

 

I will have a serious think about this and will go back to my doctor. I wasn't very prepared when I spoke to him before which made it easy for him to dismiss my concerns. Even if I'm not going to be able to get assessed, it's good to know that there is support out there and that I can work to improve my understanding of AS and how to cope better.

 

Thanks for all the responses and for the welcome, too.

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I'm repeating myself here because I know I've said this in other posts but my experience is that obtaining a diagnosis has been like getting rid of a huge burden that I'd carried all through my life to date. I now know why I'm different and that it's not my fault. Which doesn't mean I just sit back and use it as an excuse for not coping with things; on the contrary it's made me more positive and much, much happier.

 

My advice is to press for it. If it's true that one person in a hundred in the population as a whole is somewhere on the spectrum then the more people who push for a diagnosis the less likelihood that our problems will be ignored or sidelined.

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i would say opposite since my official diagnosis of A.S NAS i feel has disowned me let me down no one professional wise seems have time for you anymore unless you get in touch and chase them up so fed up/annoyed of lack of interest feel like just burden nuisance to them too much aggro for them deal with you!!! CAMHS/adult MHT couldn't be bothered you don't fit into there box as not just MH probs on it's own don't get understand AS

 

i question ask myself all time apart my parents/family understanding me better from knowledge of the condition what it involves nothing else support/help wise seems to have worked all fallen apart /pieces or i don't qualify .... gr rant moan over .... i still haven't got fulfilment of self discovery journey even though i know the road is long and windy twist and turns everyway so confusing complicating complex will i ever get to bottom of it?!

 

XKLX

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i would say opposite since my official diagnosis of A.S NAS i feel has disowned me let me down no one professional wise seems have time for you anymore unless you get in touch and chase them up so fed up/annoyed of lack of interest feel like just burden nuisance to them too much aggro for them deal with you!!! CAMHS/adult MHT couldn't be bothered you don't fit into there box as not just MH probs on it's own don't get understand AS

 

i question ask myself all time apart my parents/family understanding me better from knowledge of the condition what it involves nothing else support/help wise seems to have worked all fallen apart /pieces or i don't qualify .... gr rant moan over .... i still haven't got fulfilment of self discovery journey even though i know the road is long and windy twist and turns everyway so confusing complicating complex will i ever get to bottom of it?!

 

XKLX

I do sympathise. CAHMS are pretty useless for young people in my opinion, it doesn't give me a lot of optimism for adult services. But there might well be other support groups out there for you -I have to make an effort and find one -and you are not alone! At least we know what kind of crazy we are! and I would say it's a special kind of crazy, with a lot of good in us because we are who we are. (I'm trying to be positive!)

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At least we know what kind of crazy we are! and I would say it's a special kind of crazy, with a lot of good in us because we are who we are. (I'm trying to be positive!)

 

THAT is maybe the most positive result of getting a dx - knowing what kind of crazy we are and that we are not alone.

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What I want to know is why it costs so much to get one?!?

 

If diagnosis is that important why throw up barriers to getting diagnosed??

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I thought diagnosis was free on the NHS? Never looked into it properly yet but have been thinking about it over the last few weeks. I'm 35 & just not sure if it would be worth doing. The logical part of me says it won't change anything as I have managed without a diagnosis my whole life, but the other part of me want's a definitive answer for some strange reason.

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That's why I wanted to know what it cost - because I was diagnosed on the NHS...

 

A diagnosis changes things for you personally more than anything else... and answers are more important to some than others - whether to seek a diagnosis or not is your decision :)

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Yeh that's what I've been thinking, I really can't see what difference it will make but for some reason I do want to know for sure.

 

My mother has just found out that I have been thinking about this via my partner (the blabber mouth) & she spoke to her friend about who apparently diagnoses people with Autism. They said that because of the job I do it is not likely that I have ASD & probably just have a social phobia. I'm sure it was just a throw away comment by the person, but I found it rather annoying that people including the so called professionals will assume things about me like that without knowing anything about me apart from the job I do. Sure I'm being rather over sensitive about it though!

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There's a few people on here, adults, who have pretty good jobs and a diagnosis - the thing about the autistic spectrum is that it is just that, a spectrum from quite "mild" to severe...

 

I'm 31 and I lived my life never knowing what was wrong about so many things - I never sought out my diagnosis - but I understand the wanting to know element of things...

 

I spent 10 years in the mental health system with nothing happening at all - and another year and a half since my diagnosis with them still doing very little... so it hasn't helped in that way...

 

And I never felt relieved like so many say they do...

 

But - in some ways I am glad that I have the answers to all those hundreds and hundreds of questions I had about myself, my life and other things, and it has given me a vocabulary to describe things better too - so many things felt clearer after being diagnosed... so it hasn't changed my circumstances or got rid of my problems, but it's given me ways of thinking about things, and ways to work around things - it's a slow process for me - but things have changed in some ways - at the very least I now have a line in the sand where one side of it is "before" diagnosis and the other side if "afterwards"... Can't see into the future to know any more right now :)

 

Some people are happy to look at a list of traits and find it sufficient to understand parts of themselves using that criteria... other's want a more definitive answer - either way I don't judge - but If you feel the need to pursue this then it's your choice - some people do, others don't - it's all about the individual I guess....

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Agree with everything you say there darkshine . I've only very recently the research on ASD & that in its self has made me feel like a load of the questions I've always asked about my self has finally been explained to me. It's very early days for me yet so I'm just going to see how it goes in regards to whether I feel I need to try the diagnosis route or not. One of the things that dose push me toward a diagnosis is the people who I know would just say you can't be on the spectrum (even though most don't have a clue what it is) & so are kinda saying that my brain is wired up exactly the same way as theirs but I'm just choosing to be awkward & different.lol I don't have a particularly good job, I'm just a Fireman but people do seem to have a stereotypical view that a Fireman simply could not be on the spectrum. I disagree, but as I say most people haven't even done the research so I really shouldn't let it bother me.

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There's plenty of time - hang around here about, chat to some people and see what happens as time goes on - I think you already know which way you are leaning - but there's no rush - and there's lots of information here about people's experiences...

 

I haven't told my family about my diagnosis - my parents know and still deny it - and some people I've told have said they have all the same issues or they show a lot of interest and then have the luxury of forgetting... but I haven't told lots of people in my life - because the one's I have told have still made me feel like I have to argue the case.. my experience is not everyone else's experience though.

 

How can you think being a fireman isn't a good job? :)

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I just I feel lucky to have one at all these days, but yeh I do think it is a good job most of the time! Obviously as I'm on here you can already guess that I find the extremely social side of the job (usually working with around 10 blokes with hardly any time alone) very VERY hard work & on days where we don't have much work on I actually come home much more exhausted than if we had been rushed off our feet with emergencies because of all the extra time & effort I have to spend trying to fit in with the group, I much prefer it when we are busy!lol But apart from that side of things its all good.

 

I can imagine some of the people I know/work with arguing the case with me also if I was diagnosed (not that I'd tell most of them), it never ceases to amaze me when people feel the need to argue the toss over subjects & people that they know little about. But you can't let em get to you :)

 

I would say I'm slightly leaning towards maybe trying a diagnosis, just don't like the idea of going to the GP more than anything else. Never go there unless I have to!lol

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That's a much better version about your job, I've known a few people in the fire service - it's a job with a lot of respect to it...

 

I think people just like to all be the same sometimes - which is all well and good as long as you don't feel different :rolleyes: when I worked I used to prefer to be busy than have to deal with chatting to people, kinda lost the plot on so many things and ended up depressed with agoraphobia - so gotta find a way to sort all that out.

 

I hate going to the GP too, really hate going... I haven't got a clue what I would say if I was seeking a diagnosis - mine was set up through the mental health service by a psychiatrist and it wasn't something I sought out - my recommendation on that (assuming you want advice about what to say) would be to start a new post asking that specific question :D

 

Have you had a good trawl through the NAS' (national autistic society) website for more info?

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I think I'm in a similar position to the OP, so thanks to everyone for their comments, they've helped me as well.

Perhaps I should just stop procrastinating and make an appointment with my GP, and at least make a start towards Dx.

 

Regarding what to say to a GP, there is some information on the NAS website; and perhaps it is enough for a busy GP, but I don't know if it's enough…

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I like links - so if anyone reading this wants to read the NAS advice without having to search for it they can look from here :)

 

http://www.autism.or...-diagnosis.aspx

 

As for the GP themselves - well I guess it depends on what they are like, who they are, how busy they are, how convincing a case is presented to them, and whether they like being told about something (as I've come across a few that have hated being told things).

 

I've thought about this a bit....

 

I suppose if it were me I would take someone in with me for support - and I would also make it clear that I was seeking a diagnosis to either prove or rule out AS - I would also state that I wanted to know for personal reasons and that it would make a difference to my life to have some answers.

 

Then I would see if they were willing to listen to the why's and wherefore's (details of why I thought AS was a possible source of answers).

 

Whether this is right or not I don't know - but it's what I would probably have done... But then I am having to guess what might have been and that isn't a perfect science.

 

All I can say is that people have to do what seems right for them - and that I wouldn't look at it as "seeking a diagnosis" I would look at it as "proving whether AS is a possibility or not" because it sounds more open - really it's a bit like having a blood test - you go through the diagnosis process to find out whether you have AS or not - it might sound the same but I think there is a difference in how it comes across - as it allows a possibility of uncertainty because it could prove "not" too.

 

And I think because of that - there has to be a justification - and I don't see a better one than personal reasons that are good enough to prompt a doctor to do something about it - there has to be enough of a reason I think - and that its something each person can only know themselves and has to work out how to communicate that - which isn't the easiest thing to do without it sounding like a load of clichés...

 

That is also why I find it hard to think about how I would go about it - unless the GP I saw was so good that all that other stuff I've said didn't matter and nobody knows that til they have the conversation in the first place...

 

Bit of a minefield :blink:

 

But if it's a big thing in people's lives then I guess the only way to find out is to go and ask :)

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ime guaranteed interview scheme doesnt work. being diagnosed does work though as it helps me understand a part of the puzzle that is my autism.

 

you might wish to contact prospects employment agency via nas website, they can support autistics with problems at work.

 

i would try a different gp if yours is unwilling to help you.

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Hi everyone,

I had a long think about things over the last few months and decided that I don't think I'll push for diagnosis. I have started to do some reading on AS and a lot of things are making more sense. It can still be hard work getting through the day, but I've made a couple of changes in my life that have helped reduce my anxiety levels and I'm coping better at work.

I just wanted to say thanks for all the advice on this thread.

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The problem we have with the NHS in the UK is GP's by being General Practitioners, they know little about most things and with most of them they are certainly not abreast of modern developments and with some anything that has changed since they left med school.

 

In the UK we have been trained to believe '' Doctor Knows Best '' and some GP's have taken on an almost god like attitude where they look upon themselves as the definitive last word, but what they are on a more cynical nature is guardians of the NHS money pot where they decide who gets access to funding.

 

I have learned it pays to clue up on your own issues and there help the GP in their understanding where you are fully entitled to seek another opinion as who in this world relies on the opinion of one person these days and especially given what GP's are in terms of general practitioners, jack of all trades, masters at none, they are not gods by any stretch of the imagination, they are humans just like us who can get it wrong.

 

And so it is I am brewing for a blast at a few GP's I have had in the past, two in particular, people who have caused me suffering through their own lack of care or was it lack of knowledge, I need answers, but in order to attack I have to be constructive or the negativity will not be received and I wish in conclusion to change minds to help others in future, so they do not have to go through what I have been through.

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