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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 Flux

    There's a course on Futurelearn at the moment called 'Understand Autism'.  In it they've talked about 'double empathy'.  As far as I can see it's recognition that someone with autism doesn't intuitively empathise with someone who is NT, but similarly someone who is NT doesn't intuitively empathise with someone with autism.  On that basis to suggest someone with autism cannot empathise isn't necessarily correct.  

    The suggestion seems to be that in a roomful of people where only one of them is NT, then would they be able to empathise with anyone else in that room or would they have to observe everyone and learn how to react but never totally be able to empathise?

    I'm not saying that they wouldn't be able to, but it does put a different perspective on the whole concept of suggesting that someone who is autistic can't emphathise.

    Then there's how you express empathy.  You've described a situation where you feel that there is a time factor, so perhaps you need to have time to process things.  In which case it's not a lack of empathy, it's just a different process or a different way of expressing it maybe?

    They're also making a point on the course of saying that each person with autism is different so you can't compare one person with autism to another.  So that counsellor you refer to probably could do with understanding that!

    I believe the tomatoes are meant to be snow white, but it depends on how much sun they get.  The way this comment box has come up means that I can't see the rest of your comments in that particular post at the moment and I can't remember everything else you said in it without being able to read it.

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  • Hi Flux

    There's a course on Futurelearn at the moment called 'Understand Autism'.  In it they've talked about 'double empathy'.  As far as I can see it's recognition that someone with autism doesn't intuitively empathise with someone who is NT, but similarly someone who is NT doesn't intuitively empathise with someone with autism.  On that basis to suggest someone with autism cannot empathise isn't necessarily correct.  

    The suggestion seems to be that in a roomful of people where only one of them is NT, then would they be able to empathise with anyone else in that room or would they have to observe everyone and learn how to react but never totally be able to empathise?

    I'm not saying that they wouldn't be able to, but it does put a different perspective on the whole concept of suggesting that someone who is autistic can't emphathise.

    Then there's how you express empathy.  You've described a situation where you feel that there is a time factor, so perhaps you need to have time to process things.  In which case it's not a lack of empathy, it's just a different process or a different way of expressing it maybe?

    They're also making a point on the course of saying that each person with autism is different so you can't compare one person with autism to another.  So that counsellor you refer to probably could do with understanding that!

    I believe the tomatoes are meant to be snow white, but it depends on how much sun they get.  The way this comment box has come up means that I can't see the rest of your comments in that particular post at the moment and I can't remember everything else you said in it without being able to read it.

Children
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