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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

  • Here we go.

    For Macmillan I do book reviews.  I think they use them to inform their own libraries and to decide what to recommend to patients.  I've always enjoyed reading different types of books.  There's a range of books on the review list so I get to learn about different things.  There are quite a few that are about people's personal experiences of cancer but I usually don't go for them.  I've had my own personal experience, which I found doesn't relate to other people's experiences that well anyway, but I don't feel the need to read a book about someone else's personal experience.  

    I've heard the thing about cats too.  I found that odd as everyone says that I seem to be able to understand our dog in ways that other people don't.  Apparently I know exactly what he wants.  But I think what has happened is that I've observed his behaviour and learnt what it is he's trying to communicate.  So I guess I'm very well practiced at that having done it all my life in social situations with people!!!  I suspect the comparison to cats is probably more correct.

    Ah I see what you mean about the books, the content being appropriate to the audience at that time and the serialisation of them.

    I've heard that too about having to sell yourself more than the book.  It may have always been the case but I wouldn't be surprised if it is even more the case now.  You'd probably need to employ a PR consultant to do it all for you if you were serious as they would already understand what works best.

    I'm doing a couple of different types of review at the moment, but they're confidential so unfortunately I can't tell you anything about them.  When they're published I'll tell you it was me!!!  One of the reviews involves a lot of data so I'm particularly suited to that one.  Most people would find it very dull, but wading through lots of similar data and organising it is one of my skills that I also happen to enjoy.  So it's win-win: I enoy doing it and someone else who finds it dull doesn't have to!

Reply

  • Here we go.

    For Macmillan I do book reviews.  I think they use them to inform their own libraries and to decide what to recommend to patients.  I've always enjoyed reading different types of books.  There's a range of books on the review list so I get to learn about different things.  There are quite a few that are about people's personal experiences of cancer but I usually don't go for them.  I've had my own personal experience, which I found doesn't relate to other people's experiences that well anyway, but I don't feel the need to read a book about someone else's personal experience.  

    I've heard the thing about cats too.  I found that odd as everyone says that I seem to be able to understand our dog in ways that other people don't.  Apparently I know exactly what he wants.  But I think what has happened is that I've observed his behaviour and learnt what it is he's trying to communicate.  So I guess I'm very well practiced at that having done it all my life in social situations with people!!!  I suspect the comparison to cats is probably more correct.

    Ah I see what you mean about the books, the content being appropriate to the audience at that time and the serialisation of them.

    I've heard that too about having to sell yourself more than the book.  It may have always been the case but I wouldn't be surprised if it is even more the case now.  You'd probably need to employ a PR consultant to do it all for you if you were serious as they would already understand what works best.

    I'm doing a couple of different types of review at the moment, but they're confidential so unfortunately I can't tell you anything about them.  When they're published I'll tell you it was me!!!  One of the reviews involves a lot of data so I'm particularly suited to that one.  Most people would find it very dull, but wading through lots of similar data and organising it is one of my skills that I also happen to enjoy.  So it's win-win: I enoy doing it and someone else who finds it dull doesn't have to!

Children
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