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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

  • There's not a Lidl or Aldi near me at the moment.  Though there's talk of building one a couple of miles from here.  So I'll have to look out for one when I'm out and about.

    I'm also told I'm a coffee snob and I really don't get the 'proper coffee' chains that can't make proper coffee anyway.  I went in one and asked for a filter coffee only to be told that they didn't have any.  Huh, how does that work then?  I like independent cafes who have filter coffee all the time and do free refills.  That's how to do it!

    I guess with the medical tests it depends on whether it makes a difference.  For me I'd have to be symptomatic for further treatment, so there's no point having the tests anyway.  But some types of cancer are more 'silent' and as such the tests can highlight something that can be treated before it becomes symptomatic.  But I know from discussions on the cancer forum that even with the same type of cancer we all seem to be taking a different approach.  So we can all only do what we are most comfortable or content with doing.

    Hmm unusual veg.  I'm not sure these days as supermarkets seem to try to stock all sorts of things.  This year I've planted some seeds for white tomatoes, tomatilloes and a herb called papalo (which is meant to taste a bit like coriander).  I also got some green cauliflower that grows with a spiral shape, cinnamon flavoured basil, a different type of beetroot.  So I try to grow things that I think I will like but you can't find readily available.

    I've also got some more usual veg.  A friend gave me a load of different types of beans to plant.  I also managed to get some seed out of a shop bought butternut squash and some chillis a couple of years ago.  They did grow last year so I collected some more to plant again this year.  Free seeds!

    My blueberry bush wasn't very good until I put it in a pot with ericaceous soil.  This year is the first year that there are loads of fruit starting.  Just hope the dog doesn't try to eat them before I get to them like he did with my raspberries last year.

    I play tenor sax! I learnt when I was at school which is possibly the best time to learn because there's a lot of structure to encourage you to keep going.  So I do tend to like lots of music with sax in it.  Jools Holland does some great arrangements for sax.  As does Mark Knophler (duetting with guitar).

    Someone bought me a CD collection of sax pieces which bridges the period between the jazz age, big band and rock n roll.  Some of the pieces from the 1940s sound very like the rock n roll of the later 1950s when it was supposedly 'discovered'.

    I like a bit of Dylan too.  I think I like music that says something or has some kind of meaning.

    Have you read Wilkie Collins 'The Moonstone'?

    I just started reading a book called North and South which is meant to be a social commentary on the treatment of workers in the industrial north in the mid nineteenth century.  Although I'm finding it a bit slow at the moment.  There's been a lot of walking around in the countryside and eating dinners so far.  Not sure that really brings a book alive!  But I believe it was written as a series and as such may not read as well as a whole book.

    I also read books for Macmillan Cancer and write book reviews.  I'm not sure what to say about the one I've just read. I don't think I get the point of it.  You do get to keep the books afterwards so I'm getting quite a collection.  I think I'm going to take some of them to the local library to see if they want to put it in their healthy books display.  Although a couple of them I wouldn't recommend at all.

    Have you ever had poetry published?  You mentioned a novel earlier that was published online?  There are independent publishers who publish short stories and poetry.  Do you subscribe to anything like that?  Or have you got a poetry blog online?

Reply

  • There's not a Lidl or Aldi near me at the moment.  Though there's talk of building one a couple of miles from here.  So I'll have to look out for one when I'm out and about.

    I'm also told I'm a coffee snob and I really don't get the 'proper coffee' chains that can't make proper coffee anyway.  I went in one and asked for a filter coffee only to be told that they didn't have any.  Huh, how does that work then?  I like independent cafes who have filter coffee all the time and do free refills.  That's how to do it!

    I guess with the medical tests it depends on whether it makes a difference.  For me I'd have to be symptomatic for further treatment, so there's no point having the tests anyway.  But some types of cancer are more 'silent' and as such the tests can highlight something that can be treated before it becomes symptomatic.  But I know from discussions on the cancer forum that even with the same type of cancer we all seem to be taking a different approach.  So we can all only do what we are most comfortable or content with doing.

    Hmm unusual veg.  I'm not sure these days as supermarkets seem to try to stock all sorts of things.  This year I've planted some seeds for white tomatoes, tomatilloes and a herb called papalo (which is meant to taste a bit like coriander).  I also got some green cauliflower that grows with a spiral shape, cinnamon flavoured basil, a different type of beetroot.  So I try to grow things that I think I will like but you can't find readily available.

    I've also got some more usual veg.  A friend gave me a load of different types of beans to plant.  I also managed to get some seed out of a shop bought butternut squash and some chillis a couple of years ago.  They did grow last year so I collected some more to plant again this year.  Free seeds!

    My blueberry bush wasn't very good until I put it in a pot with ericaceous soil.  This year is the first year that there are loads of fruit starting.  Just hope the dog doesn't try to eat them before I get to them like he did with my raspberries last year.

    I play tenor sax! I learnt when I was at school which is possibly the best time to learn because there's a lot of structure to encourage you to keep going.  So I do tend to like lots of music with sax in it.  Jools Holland does some great arrangements for sax.  As does Mark Knophler (duetting with guitar).

    Someone bought me a CD collection of sax pieces which bridges the period between the jazz age, big band and rock n roll.  Some of the pieces from the 1940s sound very like the rock n roll of the later 1950s when it was supposedly 'discovered'.

    I like a bit of Dylan too.  I think I like music that says something or has some kind of meaning.

    Have you read Wilkie Collins 'The Moonstone'?

    I just started reading a book called North and South which is meant to be a social commentary on the treatment of workers in the industrial north in the mid nineteenth century.  Although I'm finding it a bit slow at the moment.  There's been a lot of walking around in the countryside and eating dinners so far.  Not sure that really brings a book alive!  But I believe it was written as a series and as such may not read as well as a whole book.

    I also read books for Macmillan Cancer and write book reviews.  I'm not sure what to say about the one I've just read. I don't think I get the point of it.  You do get to keep the books afterwards so I'm getting quite a collection.  I think I'm going to take some of them to the local library to see if they want to put it in their healthy books display.  Although a couple of them I wouldn't recommend at all.

    Have you ever had poetry published?  You mentioned a novel earlier that was published online?  There are independent publishers who publish short stories and poetry.  Do you subscribe to anything like that?  Or have you got a poetry blog online?

Children
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