• Replies 20 replies
  • Subscribers 79 subscribers
  • Views 5167 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

Is going through the diagnosis process worth it?

koffeekat9

Hi all

I've suspected for a few years that I am autistic, but I'm not sure if it's worth going through the assessment and diagnosis to confirm or disagree.

I'm 42 and have got through life so far, I thought pretty much as well as anyone.  However, I'm struggling with organising myself and have done for years.  I was diagnosed with generalised anxiety a few years ago and found that counselling didn't help at all (I went to different counsellors at different times in my life).

I first became aware of this a few years ago when someone told me that they thought someone was aspie and they didn't know how to tell them.  They started explaining their reasons (the person had various issues with food and they felt that they had difficulty communicating).  I hadn't picked up on these things as being 'problematic' and responded with 'doesn't everyone do those things then?'

This led me to look into aspergers and autism more.  I couldn't believe how much I identified with the stories of other people with autism.  I've never been able to identify with personal stories in the same way before.

I did some of the online tests, though I am aware that these are not a certainty, and they very clearly pointed towards autism for me.  I also wrote down pages and pages of experiences thorugh my life which when I stood back and looked at them were so consistent with autism I couldn't believe that it hadn't been picked up on at my counselling sessions.  I gathered all my research and showed my partner of 20 years.  Usually he would say something if he thought I was being dramatic but he just looked at me and said 'it does look like it doesn't it, are you going to ring someone to be assessed?'

But that's where I'm unsure.  Reading about adult experiences it sounds like it can be a stressful process, even just trying to convince a GP that you should be referred.  I have difficulty calling the GP for an appointment as I don't like talking to people on the phone. So just trying to get that appointment is putting me off to start with!!

So it comes down to what I hope to acheve with a diagnosis, and on that I'm not really sure. So this is where my question on this forum comes in.

1) Anyone who has been through the process - what benefits do you think there are to having done it and got the diagnosis?  Has it changed anything for you?

2) Is there anyone on here who realised they were autistic as an adult but decided not to go through the diagnosis process?  How do you deal with that?  Do you say to people that you think you are autistic, do you go on as before?

I currently feel like I'm in limbo, but if I could realistically identify in some way then I'd feel more settled.  I've seen a few comments on here where people have felt that it hasn't helped to be diagnosed as so many people don't understand autism anyway.  I'm wondering if the way forward is to help to raise awareness of autism.  However, I don't feel 'qualified' to do that because I can't officially identify as autistic without a diagnosis and without that validation how could I talk about issues from that perspective?

Also I'd love to know if there are some techniques that are more likely to work for me that could help with the everyday organisation and the anxiety issues that have never been resolved through other methods.

Parents

  • Hi Flux

    Your comment about the lack of emotional response is something I can relate to.  I've found that people don't entirely understand my cancer diagnosis initially and I couldn't understand why.  My sister told me that it's because I tell people in a 'matter of fact' way which means they don't pick up on the scale of it (I've still got it and it's untreatable).  But to me it is a matter of fact.  I do have cancer, it's there and moaning about it isn't going to change that.

    Similarly my oncology doctor speaks to me differently to how she speaks to other patients.  I told her to speak to me candidly from the start.  She does so, and told me that it's different for her to do that because she had been told by other patients that she was too blunt.  I prefer her to speak to me that way because it means I know where I am.  If someone says to me 'everything will be ok' I just don't get that comment.  Why will it be ok, what do you know that I don't???  She's never said she thinks I'm autistic, but I'm so glad that she picked up that she can speak to me the way she does without having any kind of label involved.

    The cancer support group was something I didn't want to go to anyway but was ushered there by one of the leaders of the group.  I didn't find it helpful at all, though everyone else seemed to be engaged with it.  I found myself biting my tongue a lot because I didn't think that I could say what I was really thinking without causing offence (I guess because I have learned from experience that I often say something that confuses other people or that they don't relate to).  There's an extra layer of sensitivity in a cancer support group I think, so I found I was even more on my guard than usual.  I came up with a polite email after the first group to say that I didn't think I'd be continuing with attendance.

    I like your comment (don't know if I was meant to like it or not!!) that you "want to spout inaninities and chortle at trivial pleasantries" which is how I see a lot of socialising too.  I'm often jealous of how easily some people laugh at things that I saw coming a mile off or it's a punchline that has been said many times before so why would I find it funny the tenth time around?

    I think I can talk about things that other people think are inane.  I remember at work there were two of us who could talk about the qualities of different chocolate bars for hours, i.e. the texture, which has the best mix of crunch and smooth, the quantities of cocoa solids, etc.  Yet I can't get into a conversation about stories in a soap opera for any longer than "no I don't watch it" (seemingly a popular topic of converstion in an office).

    Similarly I think to say an NT is 'normal' as opposed to non-NT isn't right.  NT is just more common maybe?  But there's no such thing as 'normal'.  It's just that we tend to be the one that isn't NT if in a group of people.

    Maybe we should each start a conversation on this group about things that interest us that we would like to talk about.  It's so rare in everday conversation that I find someone who likes to talk about the same stuff as me to the same extent.  I wonder if there would be enough of us with the same interests to be able to have those conversations on this forum?

    Flux - what kind of novels do you write?

Reply

  • Hi Flux

    Your comment about the lack of emotional response is something I can relate to.  I've found that people don't entirely understand my cancer diagnosis initially and I couldn't understand why.  My sister told me that it's because I tell people in a 'matter of fact' way which means they don't pick up on the scale of it (I've still got it and it's untreatable).  But to me it is a matter of fact.  I do have cancer, it's there and moaning about it isn't going to change that.

    Similarly my oncology doctor speaks to me differently to how she speaks to other patients.  I told her to speak to me candidly from the start.  She does so, and told me that it's different for her to do that because she had been told by other patients that she was too blunt.  I prefer her to speak to me that way because it means I know where I am.  If someone says to me 'everything will be ok' I just don't get that comment.  Why will it be ok, what do you know that I don't???  She's never said she thinks I'm autistic, but I'm so glad that she picked up that she can speak to me the way she does without having any kind of label involved.

    The cancer support group was something I didn't want to go to anyway but was ushered there by one of the leaders of the group.  I didn't find it helpful at all, though everyone else seemed to be engaged with it.  I found myself biting my tongue a lot because I didn't think that I could say what I was really thinking without causing offence (I guess because I have learned from experience that I often say something that confuses other people or that they don't relate to).  There's an extra layer of sensitivity in a cancer support group I think, so I found I was even more on my guard than usual.  I came up with a polite email after the first group to say that I didn't think I'd be continuing with attendance.

    I like your comment (don't know if I was meant to like it or not!!) that you "want to spout inaninities and chortle at trivial pleasantries" which is how I see a lot of socialising too.  I'm often jealous of how easily some people laugh at things that I saw coming a mile off or it's a punchline that has been said many times before so why would I find it funny the tenth time around?

    I think I can talk about things that other people think are inane.  I remember at work there were two of us who could talk about the qualities of different chocolate bars for hours, i.e. the texture, which has the best mix of crunch and smooth, the quantities of cocoa solids, etc.  Yet I can't get into a conversation about stories in a soap opera for any longer than "no I don't watch it" (seemingly a popular topic of converstion in an office).

    Similarly I think to say an NT is 'normal' as opposed to non-NT isn't right.  NT is just more common maybe?  But there's no such thing as 'normal'.  It's just that we tend to be the one that isn't NT if in a group of people.

    Maybe we should each start a conversation on this group about things that interest us that we would like to talk about.  It's so rare in everday conversation that I find someone who likes to talk about the same stuff as me to the same extent.  I wonder if there would be enough of us with the same interests to be able to have those conversations on this forum?

    Flux - what kind of novels do you write?

Children
No Data