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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

  • Thank you all for your considered responses.  All of them are very helpful to me.

    I don't think I'm concerned about doing the assessments themselves.  I think the bits that I'm anxious about are having to try to convince people to refer me to start with, knowing how to explain to people why I think I'm autistic and what I would do if I was told that I wasn't autistic when I feel for the first time in my life that I can connect with something.

    bf1 - that synopsis of the process is really helpful, thank you.  I'd like to think it's the same across the country, but reading other people's comments it doesn't sound like it's always that way.

    I've just found a local group for adults with asperger's/autism.  I think I'm going to contact them and go along to a couple of meetings.  They state that they welcome people who are not diagnosed but who identify with autism.  On that basis I feel that I qualify.  I wonder if the solutions to what I am asking perhaps lie in that route, i.e. looking for techniques to help with organisation and anxiety.

    I found that I identify with people on this online group far more easily than I do others.  So I'm hoping that if I go and meet some people I'll be able to identify with them too.  I think if that happens then it will be all the diagnosis I need anyway.  

    My theory does come from experience.  I also have cancer and I am on an online group for that.  Whilst I relate in some ways to others with cancer there are many aspects of having a cancer diagnosis where I don't seem to relate to most other people - that has happened both online and when I went to a local support group (having been strongly advised to do so by someone, despite not feeling like I particularly needed to).  I suspected I was on the spectrum long before I was diagnosed with cancer.  My cancer diagnosis and my reaction to it, along with how I have coped with cancer, has only increased my understanding that I am autistic.

    I agree that there is so much stigma attached to mental health.  Similarly there's a stigma attached to cancer.  People have such perceptions of things that they seem to find it difficult to see beyond those perceptions.  I never know what to do when I tell people I have cancer and they respond with "Oh I'm sorry" in a particular tone of voice.  I bite my lip to stop me saying "why would you be sorry, it's not your fault?" because I've said that before and it turns out that's not the right thing to say!  And that's cancer, which is much more widely talked about and supposedly understood.  So, I honestly don't know what I would do with a formal diagnosis of autism.  I don't know how you tell people or how much you have to explain.  Knowing how people have reacted to cancer in a variety of ways (some have done the "I'm sorry" thing, some have disappeared, some have ignored it, etc), how on earth would they react to a diagnosis of autism?

    I think the world would be a lot simpler if we didn't have to label anyone and everyone could just be accepted for who they were.  When you meet someone you go through a quick intro with them to find out how they want to be treated and you accept that for each individual without worrying too much about whether they got a score of X or Y which took them above or below a particular threshold.

    Thanks again all for your helpful responses.

Reply

  • Thank you all for your considered responses.  All of them are very helpful to me.

    I don't think I'm concerned about doing the assessments themselves.  I think the bits that I'm anxious about are having to try to convince people to refer me to start with, knowing how to explain to people why I think I'm autistic and what I would do if I was told that I wasn't autistic when I feel for the first time in my life that I can connect with something.

    bf1 - that synopsis of the process is really helpful, thank you.  I'd like to think it's the same across the country, but reading other people's comments it doesn't sound like it's always that way.

    I've just found a local group for adults with asperger's/autism.  I think I'm going to contact them and go along to a couple of meetings.  They state that they welcome people who are not diagnosed but who identify with autism.  On that basis I feel that I qualify.  I wonder if the solutions to what I am asking perhaps lie in that route, i.e. looking for techniques to help with organisation and anxiety.

    I found that I identify with people on this online group far more easily than I do others.  So I'm hoping that if I go and meet some people I'll be able to identify with them too.  I think if that happens then it will be all the diagnosis I need anyway.  

    My theory does come from experience.  I also have cancer and I am on an online group for that.  Whilst I relate in some ways to others with cancer there are many aspects of having a cancer diagnosis where I don't seem to relate to most other people - that has happened both online and when I went to a local support group (having been strongly advised to do so by someone, despite not feeling like I particularly needed to).  I suspected I was on the spectrum long before I was diagnosed with cancer.  My cancer diagnosis and my reaction to it, along with how I have coped with cancer, has only increased my understanding that I am autistic.

    I agree that there is so much stigma attached to mental health.  Similarly there's a stigma attached to cancer.  People have such perceptions of things that they seem to find it difficult to see beyond those perceptions.  I never know what to do when I tell people I have cancer and they respond with "Oh I'm sorry" in a particular tone of voice.  I bite my lip to stop me saying "why would you be sorry, it's not your fault?" because I've said that before and it turns out that's not the right thing to say!  And that's cancer, which is much more widely talked about and supposedly understood.  So, I honestly don't know what I would do with a formal diagnosis of autism.  I don't know how you tell people or how much you have to explain.  Knowing how people have reacted to cancer in a variety of ways (some have done the "I'm sorry" thing, some have disappeared, some have ignored it, etc), how on earth would they react to a diagnosis of autism?

    I think the world would be a lot simpler if we didn't have to label anyone and everyone could just be accepted for who they were.  When you meet someone you go through a quick intro with them to find out how they want to be treated and you accept that for each individual without worrying too much about whether they got a score of X or Y which took them above or below a particular threshold.

    Thanks again all for your helpful responses.

Children
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