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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. I can relate to some of your problems, maybe. I developed diabetes, then had an op for a twisted bowel, then had an op for cancer the following year, and the year after that was hospitalised for a week due to adverse effects of chemo. After this I began wondering if I was somewhere on the autistic spectrum because I had no emotional response to this run of problems. My GP made a gesture that I read as "me too" when I said I didn't like socialising. To be fair, he made an effort to get me referred for assessment, to the extent that one of the people I saw due to his efforts commented on it. After seeing a psychiatrist - who believed I had Apserger's - I was referred for further assessemnt, and several months later I was diagnosed. I think I thought it would be a turning point, but it hasn't happened like that. The idea of socialising - at the risk of sounding melodramatic - horrifies me. Yet I feel my isolation. I write novels, which I don't even try to get published (other than one on Amazon), but they mean I can create worlds I control. But you can't write fiction and go for walks with your wife every waking hour. I do envy NT people. I want to spout inaninities and chortle at trivial pleasantries, which is how socialising looks and sounds to me. I don't see neurotypical people as "normal" as opposed to my oddity. But it sure looks and sounds easier than looking at a family group sittimng round a dining table and feeling as if I'm watching a play that I can't step into becaue no one gave me the script. I'm 67 and putting all my money of reincarnation, in the hope I can have another go round.

Reply

  • Hello, Katfish. I can relate to some of your problems, maybe. I developed diabetes, then had an op for a twisted bowel, then had an op for cancer the following year, and the year after that was hospitalised for a week due to adverse effects of chemo. After this I began wondering if I was somewhere on the autistic spectrum because I had no emotional response to this run of problems. My GP made a gesture that I read as "me too" when I said I didn't like socialising. To be fair, he made an effort to get me referred for assessment, to the extent that one of the people I saw due to his efforts commented on it. After seeing a psychiatrist - who believed I had Apserger's - I was referred for further assessemnt, and several months later I was diagnosed. I think I thought it would be a turning point, but it hasn't happened like that. The idea of socialising - at the risk of sounding melodramatic - horrifies me. Yet I feel my isolation. I write novels, which I don't even try to get published (other than one on Amazon), but they mean I can create worlds I control. But you can't write fiction and go for walks with your wife every waking hour. I do envy NT people. I want to spout inaninities and chortle at trivial pleasantries, which is how socialising looks and sounds to me. I don't see neurotypical people as "normal" as opposed to my oddity. But it sure looks and sounds easier than looking at a family group sittimng round a dining table and feeling as if I'm watching a play that I can't step into becaue no one gave me the script. I'm 67 and putting all my money of reincarnation, in the hope I can have another go round.

Children
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