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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

  • Hi Capers123

    You've not wandered off topic at all.  I can see why you've shared your story as we were discussing health issues and how our reaction to them doesn't appear to be the expected one.

    Your response to what happened with your daughter is understandable to me, though I won't suggest that I know how you feel as that is your own experience.  It shows to me that you really care as you were trying to find the best possible way to look after her.  Looking after someone doesn't necessarily mean throwing as much treatment at someone as possible.  It's also looking at what is best overall and you can't make that decision without trying to understand all of the issues involved.  So it doesn't sound cold and heartless to me, it sounds like there was a whole lot of heart involved.  

    It may not be the way that a lot of people might have approached the situation, but it doesn't make it any less an emotional experience for you.  How you express your emotions is just different.  The doctor involved just made an observation.  It doesn't mean that they thought that it was cold or heartless, it was just an observation they made at that time.

    I have to admit that I also seek the information out that is directed at the medical profession. I read the stuff that's aimed at patients and there's not enough detail in it for me to understand things at the level that I need to understand them.  I usually have more questions than I had before I read the leaflet aimed at the patient.  I don't understand how anyone can read those leaflets and find them to contain sufficient detail!!

Reply

  • Hi Capers123

    You've not wandered off topic at all.  I can see why you've shared your story as we were discussing health issues and how our reaction to them doesn't appear to be the expected one.

    Your response to what happened with your daughter is understandable to me, though I won't suggest that I know how you feel as that is your own experience.  It shows to me that you really care as you were trying to find the best possible way to look after her.  Looking after someone doesn't necessarily mean throwing as much treatment at someone as possible.  It's also looking at what is best overall and you can't make that decision without trying to understand all of the issues involved.  So it doesn't sound cold and heartless to me, it sounds like there was a whole lot of heart involved.  

    It may not be the way that a lot of people might have approached the situation, but it doesn't make it any less an emotional experience for you.  How you express your emotions is just different.  The doctor involved just made an observation.  It doesn't mean that they thought that it was cold or heartless, it was just an observation they made at that time.

    I have to admit that I also seek the information out that is directed at the medical profession. I read the stuff that's aimed at patients and there's not enough detail in it for me to understand things at the level that I need to understand them.  I usually have more questions than I had before I read the leaflet aimed at the patient.  I don't understand how anyone can read those leaflets and find them to contain sufficient detail!!

Children
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