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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

  • I posted a similar question to this last year, when I was conflicted about whether to go for a diagnosis or not. So far, my decision has been to not bother. For me, there's no practial need for a diagnosis, and I don't need to be told that I have Aspergers. I've done all the online tests, read various books and in comparison to others who have been diagnosed, I seem to be a lot further along the spectrum. There are thousands of people afflicted with physical and mental health issues who don't seek medical attention, so I don't see that it is in any way unusual to self-diagnose a condition if you don't feel that treatment is available or suitable. I don't need to go to a doctor to be told I've got a bad back, the pain tells me that; equally, I don't need a psychologist to tell me I have an ASD. I wouldn't presume to make an accurate diagnosis, but psychology is not an exact science anyway.

    I'm also not comfortable with getting involved with mental health professionals. I just can't see how I can walk into a doctor's surgery and say 'I think I have Aspergers....' without that leading to questions about my mental health, and I really don't want to go there. Am I going to end up with a diagnosis of various co-morbid conditions? If that happens, I'll then define myself as mentally unwell, and I fear that would remove the last remnants of my self-respect.

    I feel that mental health issues are still rather stimatised, and many people tend to associate Aspergers with mental health disorders and rather more severe personality problems. I am just not very comfortable telling people that I have the condition, but realising I do have it has helped me accept some of my failings, and helped me to come to terms with many of the decisions I have made.

    I can see many good reasons to get a diagnosis: for work, to explain difficulties to family members and friends (I have few of the latter and none of the former), and for young people I would say it is an absolute necessity to get a diagnosis in the early teenage years - that would have helped me enormously. But for me, I can't see the benefit at the moment. A diagnosis is not a cure, and there's no treatment for Aspergers - you'll still be the same person one way or the other.

    It's all very subjective. I've gone through my reasons to carry on as I am, but they may not apply to you. I think the important thing is that if there are no clear-cut criteria to get a diagnosis, you shouldn't feel pressured or obligated to get one just because there is a label that can be applied to your 'condition'.

Reply

  • I posted a similar question to this last year, when I was conflicted about whether to go for a diagnosis or not. So far, my decision has been to not bother. For me, there's no practial need for a diagnosis, and I don't need to be told that I have Aspergers. I've done all the online tests, read various books and in comparison to others who have been diagnosed, I seem to be a lot further along the spectrum. There are thousands of people afflicted with physical and mental health issues who don't seek medical attention, so I don't see that it is in any way unusual to self-diagnose a condition if you don't feel that treatment is available or suitable. I don't need to go to a doctor to be told I've got a bad back, the pain tells me that; equally, I don't need a psychologist to tell me I have an ASD. I wouldn't presume to make an accurate diagnosis, but psychology is not an exact science anyway.

    I'm also not comfortable with getting involved with mental health professionals. I just can't see how I can walk into a doctor's surgery and say 'I think I have Aspergers....' without that leading to questions about my mental health, and I really don't want to go there. Am I going to end up with a diagnosis of various co-morbid conditions? If that happens, I'll then define myself as mentally unwell, and I fear that would remove the last remnants of my self-respect.

    I feel that mental health issues are still rather stimatised, and many people tend to associate Aspergers with mental health disorders and rather more severe personality problems. I am just not very comfortable telling people that I have the condition, but realising I do have it has helped me accept some of my failings, and helped me to come to terms with many of the decisions I have made.

    I can see many good reasons to get a diagnosis: for work, to explain difficulties to family members and friends (I have few of the latter and none of the former), and for young people I would say it is an absolute necessity to get a diagnosis in the early teenage years - that would have helped me enormously. But for me, I can't see the benefit at the moment. A diagnosis is not a cure, and there's no treatment for Aspergers - you'll still be the same person one way or the other.

    It's all very subjective. I've gone through my reasons to carry on as I am, but they may not apply to you. I think the important thing is that if there are no clear-cut criteria to get a diagnosis, you shouldn't feel pressured or obligated to get one just because there is a label that can be applied to your 'condition'.

Children
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