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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

  • Hello, Katfish. Chocolate! Now you're talking. Since I gave up cigarettes and alcohol, chocolate is the thing, and coffee. 85% chocolate and espresso. As far as bars go - Terries' plain chocolate wafers; but being diabetic I have to be careful. But not too careful.

    Your experience with the cancer group is what puts me off joining Asperger's groups. One professional in the field told me that when people with Asperger's get together they all talk about their own interests, no one listens to anyone else, but they enjoy it. I do like the allusion that someone listens to me. So the written word is ideal. No one can cut you off or yawn in your face. I've known NT people listen to me holding forth for a while and then just cut me off in mid sentence way, which is probably understandable from their side. Especially as I sometimes don't respond to other people if they go on too long, because I don't process information as fast as them, which must look as if I'm rude or stupid. For years I thought I was deaf, then one day I realised I just stop listening because I can't keep up, and if there's more than one other person, I get left out, because the smarty pants NTs just talk to each other.

    So, yes, if we could find people who share our interests the chances of dialogue would be improved. What are you interests?

    I had the cancer op, and then the chemo, and then some follow up, and then decided not to carry on with further tests, so I don't know if I'm "out of the wood" as the doc put it, because out of the wood was two or three years away. To crib the grafitti, I'm immortal - so far. Ditto diabetes tests. I really can't relate to the idea of "battling" cancer. I've been lucky. No one's told me I'm inoperable, just that I may be found to be if I discontinue tests.

    Having said that, I can't pay enough tributes to the NHS staff who looked after me, and the Macmillan people who looked after me when I first presented with chemo problems.

    My novels mostly involve people with issues from childhood, as a way of coping with my own. Oh, daddy, why did you run out of me when I was a baby? And why didn't anyone tell me the man I called dad was no such thing? Etc ad nauseumn. And also about the baddy getting his comeuppance, sometimes somewhat blood-thirstily. But hey ho, Shakespeare was bloody too. And I'm alive and he isn't.

Reply

  • Hello, Katfish. Chocolate! Now you're talking. Since I gave up cigarettes and alcohol, chocolate is the thing, and coffee. 85% chocolate and espresso. As far as bars go - Terries' plain chocolate wafers; but being diabetic I have to be careful. But not too careful.

    Your experience with the cancer group is what puts me off joining Asperger's groups. One professional in the field told me that when people with Asperger's get together they all talk about their own interests, no one listens to anyone else, but they enjoy it. I do like the allusion that someone listens to me. So the written word is ideal. No one can cut you off or yawn in your face. I've known NT people listen to me holding forth for a while and then just cut me off in mid sentence way, which is probably understandable from their side. Especially as I sometimes don't respond to other people if they go on too long, because I don't process information as fast as them, which must look as if I'm rude or stupid. For years I thought I was deaf, then one day I realised I just stop listening because I can't keep up, and if there's more than one other person, I get left out, because the smarty pants NTs just talk to each other.

    So, yes, if we could find people who share our interests the chances of dialogue would be improved. What are you interests?

    I had the cancer op, and then the chemo, and then some follow up, and then decided not to carry on with further tests, so I don't know if I'm "out of the wood" as the doc put it, because out of the wood was two or three years away. To crib the grafitti, I'm immortal - so far. Ditto diabetes tests. I really can't relate to the idea of "battling" cancer. I've been lucky. No one's told me I'm inoperable, just that I may be found to be if I discontinue tests.

    Having said that, I can't pay enough tributes to the NHS staff who looked after me, and the Macmillan people who looked after me when I first presented with chemo problems.

    My novels mostly involve people with issues from childhood, as a way of coping with my own. Oh, daddy, why did you run out of me when I was a baby? And why didn't anyone tell me the man I called dad was no such thing? Etc ad nauseumn. And also about the baddy getting his comeuppance, sometimes somewhat blood-thirstily. But hey ho, Shakespeare was bloody too. And I'm alive and he isn't.

Children
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