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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

  • A white tomato! Like snow? Or whitish like a white rhino? Never seen green cauliflower nor papalo. My food tends to be ruled by routine - broccoli, beans, chic peas, fish and chicken, veggie grills, bread I make with a maker, espresso coffee for cappuccinos, tea - rotating menu, set times. Not that I won't try new things of a diabetes friendly nature - lowish GI, not too carb heavy -, as long as they turn up at the right time, important for diabetes and my head. When I see all the weeds growing I regret there aren't more of them we could eat. I mean apart from chewing grass.

     

    To what end do you read books for Macmillan? I mean, why do they want you to read them? (Dear Macmillan. They have an out patients' facility in the hospital I attended, and when I was far sicker from chemo than I'd ever felt due to cancer they took the whole weight off me.  They got me admitted to a ward the same day, sick as a dog but relieved beyond measure by the kind and understanding way they took over when I staggered in.)

     

    I'm sure support groups are useful for most people. I do envy people ease of interaction with others. On the other hand, the group is an alien beast to me. Someone told me that there was a tongue in cheek theory that cats all have Asperger's. It suddenly occurred to me today that it must seem odd that I will get up and leave a social group without explaining myself, to be somewhere alone,  and how much like the cat that it is.

    As for tests - I was told I could live another 20 years with after care. I don't want 20 years of measuring out my life between medical appointments. So I'm just being open ended about it all. When you're dead it makes no difference how long you lived.

    I have read The Moonstone and other Wilkie Collins' novels, but can't remember them much. Ditto Elizabeth Gaskell, but I can't remember much about them either. Many (most?) 19thcentury novels were issued in parts. Dickens for example. I suppose novels were much like soaps today. People are nosey, and a dinner in a mill owner's house would be of interest if that's all you had - no photos, no TV, no internet. And parts meant poorer people could afford them.

    I published a novel on Kindle and had a couple of poems in a paper and magazine. A novelist of my acquaintance read one of my early stories and said it was entertaining and / or funny, but it needed editing down and I needed to sell myself - not the book! I can't sell myself. I haven't the foggiest who I am, and I have no wish to create a persona for public consumption, even if my work would interest people.

     

    Who do you review for? And what kind of writing?

Reply

  • A white tomato! Like snow? Or whitish like a white rhino? Never seen green cauliflower nor papalo. My food tends to be ruled by routine - broccoli, beans, chic peas, fish and chicken, veggie grills, bread I make with a maker, espresso coffee for cappuccinos, tea - rotating menu, set times. Not that I won't try new things of a diabetes friendly nature - lowish GI, not too carb heavy -, as long as they turn up at the right time, important for diabetes and my head. When I see all the weeds growing I regret there aren't more of them we could eat. I mean apart from chewing grass.

     

    To what end do you read books for Macmillan? I mean, why do they want you to read them? (Dear Macmillan. They have an out patients' facility in the hospital I attended, and when I was far sicker from chemo than I'd ever felt due to cancer they took the whole weight off me.  They got me admitted to a ward the same day, sick as a dog but relieved beyond measure by the kind and understanding way they took over when I staggered in.)

     

    I'm sure support groups are useful for most people. I do envy people ease of interaction with others. On the other hand, the group is an alien beast to me. Someone told me that there was a tongue in cheek theory that cats all have Asperger's. It suddenly occurred to me today that it must seem odd that I will get up and leave a social group without explaining myself, to be somewhere alone,  and how much like the cat that it is.

    As for tests - I was told I could live another 20 years with after care. I don't want 20 years of measuring out my life between medical appointments. So I'm just being open ended about it all. When you're dead it makes no difference how long you lived.

    I have read The Moonstone and other Wilkie Collins' novels, but can't remember them much. Ditto Elizabeth Gaskell, but I can't remember much about them either. Many (most?) 19thcentury novels were issued in parts. Dickens for example. I suppose novels were much like soaps today. People are nosey, and a dinner in a mill owner's house would be of interest if that's all you had - no photos, no TV, no internet. And parts meant poorer people could afford them.

    I published a novel on Kindle and had a couple of poems in a paper and magazine. A novelist of my acquaintance read one of my early stories and said it was entertaining and / or funny, but it needed editing down and I needed to sell myself - not the book! I can't sell myself. I haven't the foggiest who I am, and I have no wish to create a persona for public consumption, even if my work would interest people.

     

    Who do you review for? And what kind of writing?

Children
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