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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

  • Oh wow I haven't seen Terry's dark choc wafers for years.  Now I'd really like to be sitting nibbling one but don't know where to get one from. Although I think my absolute favourite is a dark chocolate orange.  Never quite got the 'tap and unwrap' thing though. Usually it's whack it off the kithen counter, unwrap and then go at it with a knife.

    I see what you're saying about the Aspy group.  I must admit I'm a little uncertain about whether I'll find it helpful or not.  But I'll never know unless I go.

    Similarly I have trouble following conversations, particularly if it's more than one to one.  I just can't follow the conversation as it moves too fast for me.  If it's a large group of people with several conversations then I have no chance and tend to switch off.  And then someone asks if I am alright.  Well not really but how do I explain that I can't really follow the conversations like everyone else can?

    Why did you decide not to go to any more follow ups?  I still go to my follow ups, though there's no scans or treatment until I have symptoms again anyway.  Similarly I don't identify with the concept of 'battling' cancer.  I find it unhelpful to think in those terms because it implies a struggle or a fight against your own cells.  I also didn't like being called a 'survivor' by a nurse without being asked if I identified with that (which I don't).  Clearly some people do identify with these things but it would be nice if there was recognition that not everyone does.

    I must admit to having a penchant for a bloodthirsty story.  I was talking to friends a couple of weeks ago about what we'd all been watching on TV lately.  Everyone just looked a bit horrified by my list of things, particularly when I was happily explaining what they were about.  Do you also read a lot or are you more interested in writing?

    My interests - hmm, they do change with the season, though I do often come back to the same ones each year.  Over winter I tend to be more musical but over summer I grow vegtables (usually I hunt out unusual ones to grow as I like to prove people wrong when they tell me they won't grow!!).  Always challenging perceptions????!!!!  I've been trying to learn new languages for years, but it's something that doesn't come easily to me at all.  I tend to be able to read it ok but the talking just throws me.  I"m also doing some analytical research at the moment to use my analytical brain cells and keep them happy.

    Mmm coffee, but it's got to be freshly brewed.  Can't stand freeze dried stuff because it just tastes stale.

Reply

  • Oh wow I haven't seen Terry's dark choc wafers for years.  Now I'd really like to be sitting nibbling one but don't know where to get one from. Although I think my absolute favourite is a dark chocolate orange.  Never quite got the 'tap and unwrap' thing though. Usually it's whack it off the kithen counter, unwrap and then go at it with a knife.

    I see what you're saying about the Aspy group.  I must admit I'm a little uncertain about whether I'll find it helpful or not.  But I'll never know unless I go.

    Similarly I have trouble following conversations, particularly if it's more than one to one.  I just can't follow the conversation as it moves too fast for me.  If it's a large group of people with several conversations then I have no chance and tend to switch off.  And then someone asks if I am alright.  Well not really but how do I explain that I can't really follow the conversations like everyone else can?

    Why did you decide not to go to any more follow ups?  I still go to my follow ups, though there's no scans or treatment until I have symptoms again anyway.  Similarly I don't identify with the concept of 'battling' cancer.  I find it unhelpful to think in those terms because it implies a struggle or a fight against your own cells.  I also didn't like being called a 'survivor' by a nurse without being asked if I identified with that (which I don't).  Clearly some people do identify with these things but it would be nice if there was recognition that not everyone does.

    I must admit to having a penchant for a bloodthirsty story.  I was talking to friends a couple of weeks ago about what we'd all been watching on TV lately.  Everyone just looked a bit horrified by my list of things, particularly when I was happily explaining what they were about.  Do you also read a lot or are you more interested in writing?

    My interests - hmm, they do change with the season, though I do often come back to the same ones each year.  Over winter I tend to be more musical but over summer I grow vegtables (usually I hunt out unusual ones to grow as I like to prove people wrong when they tell me they won't grow!!).  Always challenging perceptions????!!!!  I've been trying to learn new languages for years, but it's something that doesn't come easily to me at all.  I tend to be able to read it ok but the talking just throws me.  I"m also doing some analytical research at the moment to use my analytical brain cells and keep them happy.

    Mmm coffee, but it's got to be freshly brewed.  Can't stand freeze dried stuff because it just tastes stale.

Children
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