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Should I get a formal diagnosis?

Lepton

I'm a male in my mid 60's and suspect that it is highly likely that I have ASD and would like to ask the folk here for some advice.

Recently I took several online ASD tests and scored well into the positive on all of them. Then I discovered the RAADS-R and took that, I scored 90, with Social Relatedness and Circumscribed Interests as the big contributors.

If I do indeed have ASD, the SR component would certainly explain a lot of things that have puzzled me in my life, particularly my difficulties in social situations. On the plus side, the CI factor seems to have given me an intense intellectual focus that was of great use to me in my job.

What I'd like to ask folk here is if there are any good reasons for me to get a formal test/diagnosis? I am pretty comfortable in my skin and certainly do not require any treatment or help - I like the way I am!

What concerns me is that if I do have ASD, then I have been the way I am all of my life and never suspected it, which does seem to suggest that I may be blind to some of the aspects/ramifications of it.

So, are there any advantages to a formal diagnosis, or perhaps more importantly, any drawbacks?

  • in reply to Dawn

    I guess this is so new to me I'm sort of still processing it, which is an odd thing to say when I've obviously been this way my entire life. So my enquiries here will be part of that processing, I am thinking that there are bound to be folk with my particular kind of wiring on this forum that have already been through all of this yonks ago and hope to learn from their experience.

    On the basis of the tests I have done online I am pretty definite I have ASD, additionally, many of the things I've read on this forum seem very familiar.

    I don't have any sensory problems at all, and no cognitive/language impairment, my high scores are all in Social Relatedness and Circumscribed Interests.

    The term "Circumscibed Interests" seems odd to me as I have many interests, far more than any of my (very) NT friends. I may be more "into" these interests than most, but I had thought that was a side-effect of working in scientific research, now I realise I'm probably just neurologically hardwired that way. In fact I would be distraught if I lost the intensity of focus and tenacity with problems I have been used to all my life.
    I do not see that aspect of my makeup as a deficit or disorder at all, rather as a valuable gift.

    The SR aspect has been the most problematic for me, mainly problems with social events, meeting people, or making friends, as I imagine that I come over a little odd, standoffish, or too intense at times. I've learned coping strategies for that (basically emulation), so I do have quite a group of friends that I used to see regularly.... until Covid put the kibosh on socialising. The SR problem thankfully did not prevent me finding a partner, I'm married and we've been together for well over forty years now and still really love each other.

    If you were to tell me that I could have my life again, free of the social problems, but at the cost of my focus and tenacity, I certainly would not take that deal. I'm retired now, so I have no work pressures, and I've long come to terms with my SR problems, so I don't think I need any practical assistance from the health services.

    I was asking about formal diagnosis primarily in case there were any serious downsides. For instance, I know that some medical diagnoses can have very negative effects on getting some forms of insurance. I've also seen cases where a person's disability has resulted in suboptimal care, in extreme cases up to the point where they get a DNR notice when receiving hospital treatment. Is there anything like that associated with ASD?

    I know that ASD is part of me, has always been part of me, it will just take a while to fully incorporate it into my personal feeling of "this is who I am".

    The odd thing is that if I had not watched a thriller movie a few months ago and thought "damn, he's describing me", I would never have taken those tests and still be blissfully unaware that I have ASD.

  • Hi Lepton,

    I am 57 nearly and have recently been diagnosed.

    On the point that you never suspected - well, in common with a lot of adults our age, had I not run into a mental health problem because of it, I would never have suspected either. And that one issue aside, I was otherwise quite happy with my life. Had that one consequence not brought me to a diagnosis, I would have spent my whole life wondering why some things were just quirky about me or that bit harder for me, but likewise finding other stuff much easier and very useful at work and in the furtherance of my personal interests.  Would I otherwise have "needed" a diagnosis? - arguably not. 

    Now that I have it, however, not only do I have the answers I needed for the mental health problem, but it has answered so much for me besides that I am finding very, very useful and I am absolutely delighted.  For instance, I've always got really, really tired to the point of absolute exhaustion and no doctor could tell me why.  Now, I realise that this happens at the times when there's too much commute with too much sensory bombardment and too much social demand made on me.  I can use 'energy accounting' now to help with that. 

    If you don't feel that your neurodivergence is causing you any particular difficulty - and it isn't inevitable that ASD has to mean a life of hardship and difficulty, then it might be that you feel you don't 'need' a diagnosis.  Lots of people self-diagnose and leave it there, happy they have their answers.  And you don't 'need' a diagnosis to research strategies for better dealing with social situations or sensory issues or energy depletion for yourself.  The question is, I guess, do you want a diagnosis? 

    A diagnosis can confirm your suspicions for you and you would get a report detailing your individual profile which you might find very useful in many ways.  Many of us feel the diagnosis has validated our whole experience of life and made us more confident.  It could be that there are one or two things you can make easier on yourself by understanding your profile. It could work for you in few ways you haven't thought of yet.   If you run into problems at work or using services in the future it would also give you some protections. So, I guess it is also an insurance policy in some respects.  Personally, I can't see any downside in getting one.  

    That said, some people find the process stressful to go through and some just don't want to be labelled or worry about what other people might think.  The choice, in the end, has to be a personal one.  If you think you want to go for it, whether you think it can solve problems for you or whether you are just curious, then go for it.  The place to start is your GP.  A GP might not refer you however if you don't have an problems in life because of your ASD, even if they acknowledge that you might well be on the Spectrum.  If that does turn out to be the case, then you do have the option of a private assessment.  It is perfectly reasonable to want to know, because you just want to know.

    Whether you choose to go through the assessment process or not, the community is here to bounce ideas off, for moral support, or to trawl posts for new strategies and coping techniques.  

    Good luck