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Newbie Q: does a professional diagnosis help? is it worth the stress?

MarcoPolo

A pre-disclaimer!
I understand that everyone's condition is unique and I'm sure that diagnosis has been hugely helpful to many. I'm 52 and wondering if it is worth it for me since I have got this far in life with out it so far, though the struggle is hard. I dont mean to put judgement on the diagnosis, the condition or any individual. I just don't wish to add more hassle to the complexities of life! Hoping you will understand! Thank you.


Hi,

I saw the introductions group and thought I should join in. I've been reading many of the posts and it is comforting to realise I'm not the only one that has over-sensory conditions and struggles in life. Thank you. It has made me realise I should perhaps speak up as the conversation could help others too.

I'm 52 and currently not officially diagnosed with ASD (Autism Spectrum Disorder). I've been having a long chat with AI on the pros and cons of getting diagnosed as I don't yet know if it would help me or just add to the stress.
In your opinion does a professional diagnosis help? is it worth the stress? Why should I or why shouldn't I go for a professional diagnosis?

A little background for reference:
I have a close and caring friend that works in mental health that has been helping me.
I score 179 on RAADS-R and similar on the other tests.
Reflecting on life it suddenly makes sense why everything has been so hard.
And when I say suddenly, I have been studying this for the last 12 months.

I have lots more to ask but I'll not spam the forum (yet!)

Thank you.

(BTW my name isn't Marco but I'm very discreet about my condition at the moment) 


Parents

  • Hi and welcome to the community!

    MarcoPolo said:
    In your opinion does a professional diagnosis help? is it worth the stress? Why should I or why shouldn't I go for a professional diagnosis?

    For me, the answer is a resounding yes.

    You might have discussed some of the factors in this resource in your AI chat or read about them during your studies, but I'll still share the link just in case it's helpful:

    NAS - Deciding whether to seek an autism assessment

    Personally, I find the first sentence under the "benefits of..." section very compelling, just by itself: "The only way to know for sure whether you are, or your child is, autistic is to have a formal autism assessment."  For me, that "knowing for sure" was very important.

    As a side note, I'll just flag that recent research (focusing on diagnoses made within the NHS) found that "When used as a self-report tool, the RAADS-R had no clinical value." However, I know that you also said that the other screening tests showed similar results, so please don't read this as me trying to challenge your overall thinking in any way. I just thought I should mention it.

    MarcoPolo said:
    I just don't wish to add more hassle to the complexities of life!

    I'm finding that my diagnosis is having the opposite effect. Knowing that I definitely see and experience life through a different metaphorical lens is proving increasingly helpful for me - including in respect of practical things and my mental health.

    I did find the process extremely stressful, including before and after my diagnosis. Like you, I did a lot of research and learning beforehand, but that didn't stop me from struggling with processing it all afterwards - which is not uncommon:

    NAS - How will I feel after receiving an autism diagnosis

    However, I don't want to scare you off - and you might have a very different and purely positive experience. The point I'm hoping to make here is that, despite all of that, in my case I still feel that seeking my diagnosis was definitely worth it.

    I wish you all the best, whatever you decide is best for you.

  • in reply to Bunny

    Thank you so much for all the points and references, I am going to read them right after replying to you!

    That "knowing for sure" would perhaps relieve some of the stress.
    Although there is a now new stress of: "what if they say I'm fine? then what the hell is wrong with me!"

    As for RAADS-R and other self reporting tools, I understand and agree that they are in no means formal. There is a lot more to my self diagnosis than just the test but its the simplest way of presenting my state here. Perhaps I could also consider that about a professional diagnosis.

    Amazing and helpful to hear how your diagnosis helped you. Thank you so much for sharing all this.

  • in reply to MarcoPolo
    MarcoPolo said:
    what if they say I'm fine? then what the hell is wrong with me

    Hi and welcome MatcoPolo

    This was my fear, my thinking was if I don’t get a diagnosis then where do I look next? 
    Curiosity and a need for an answer in the end was required for me as I was finding life very difficult. 
    It’s been nearly 2 months since my diagnosis (age 50) and I am still trying to figure things out. 
    I have a son who is diagnosed also so I felt a responsibility to not ignore my experiences, i didn’t want him to grow up having to mask heavily as I have as I know the consequences. I didn’t want him to feel alone and I wanted him to know that I truly understood him. 

    Those were my reasons for seeking a professional diagnosis but I also totally understand why some would not feel the need to seek one. I think if you know then you know and a post diagnosis report is not going to change your experiences and challenges so self identification is completely valid.

    I am sorry I am not able to offer more but just thought I would give my reasons. 

Reply
  • in reply to MarcoPolo
    MarcoPolo said:
    what if they say I'm fine? then what the hell is wrong with me

    Hi and welcome MatcoPolo

    This was my fear, my thinking was if I don’t get a diagnosis then where do I look next? 
    Curiosity and a need for an answer in the end was required for me as I was finding life very difficult. 
    It’s been nearly 2 months since my diagnosis (age 50) and I am still trying to figure things out. 
    I have a son who is diagnosed also so I felt a responsibility to not ignore my experiences, i didn’t want him to grow up having to mask heavily as I have as I know the consequences. I didn’t want him to feel alone and I wanted him to know that I truly understood him. 

    Those were my reasons for seeking a professional diagnosis but I also totally understand why some would not feel the need to seek one. I think if you know then you know and a post diagnosis report is not going to change your experiences and challenges so self identification is completely valid.

    I am sorry I am not able to offer more but just thought I would give my reasons. 

Children
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