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Hello - is a diagnosis worth it as an adult?

Phil.Squirrel

Hello, hope you don't mind me posting here as I haven't been formally diagnosed, so if inappropriate, please delete. I'm 47 years old and, after struggling to connect with people socially all my life, I've recently started reading more about autism since my wife told me that she thinks I'm autistic. Reading accounts from autistic people has been like reading about myself! It not only would explain my problems socially, but also why I have unusual interests and hobbies, why I like routines so much, my sleeping difficulties over the years, and why I find certain situations in work a challenge.

So my question to anyone who has been diagnosed, particular as an adult, is whether the process is worth it? I've read enough to be confident that I'm autistic, and I find medical consultations stressful, so I'm wondering if there is any benefit. I'm also wondering about my son, who's 17, and I'm pretty sure is autistic too.

I did see a counsellor 20 years ago about social anxiety and raised the possibility of having Asperger's at the time, having read about it, but she assured me that I didn't - on the basis of giving her eye contact - and I'm now sure that she was wrong.

Although I do struggle socially in work, I've been fortunate to do alright for myself and have been promoted to management after working for a long time in the same job, essentially by just doing as I was told. Bizarrely, I quite enjoy leading people, it works well for me as I can keep a natural distance from staff and act in a professional way. The disadvantages are having to network with other managers, which I really struggle with, and dealing with superior staff and HR processes which treat people in 'authoritarian' ways which seem alien to me. I'm not sure there's anything to be gained by presenting an autism diagnosis in work.

I'm also lucky enough to be happily married but I only have one friend otherwise who I've known since we were kids.

From what I've read, it doesn't sound like there are any medical treatments for autism, or medication that would help, so a diagnosis doesn't seem beneficial for that reason either. And I've read mixed / negative views of therapy being offered which seems aimed at making people behave more 'neurotypically'.

My son's context is slightly different: he's in sixth form and is doing reasonably well in school but doesn't have any friends who he meets outside of school. He did have a small friend group in primary but went up to secondary during the lockdowns in 2020 and pretty much lost all his friends in that period. Other than to go to school, he doesn't leave the house. He does have a friend in school who he seems to get on with, who has been diagnosed as autistic. I'm wondering if a diagnosis for him would help to prepare him for the wider world, so I'm interested to hear anyone's experience of being diagnosed in their late teens.

I have another, younger son who I'm pretty sure isn't autistic as he's out and about a lot of the time, had a girlfriend by the age of 11, and is constantly on group calls and chat with his many friends... I'm very proud of him but slightly envious! Any advice from autistic parents with neurotypical children?  How can I try and keep a good bond going with him growing up?

Thanks for reading!

  • in reply to Dyanne891

    Masking well can require you to take on an alternate position, which is why some are good at acting (if you overcome the nerves). I think it means it is also possible to convince yourself you have something you don't. Therefore, an objective 3rd part view is useful.

  • in reply to Stuart333

    After doing my own research I was convinced I had adhd.  after undergoing a formal assessment, it was confirmed by 3 clinicians that I didn't have adhd and infact i was given a diagnosis of autism.  so for me it was important to have a diagnosis.  doing research on the internet and thinking..yep thats me, isn't always the case.  dyanne x

  • in reply to Phil.Squirrel

    Cheers  :-)

    When you step you, your son and family are "boldly going" where a lot of people have gone before...

    Hehe Live long and prosper!

  • Just wanted to thank everyone for all your replies and suggestions (and particularly the suggestions on resources / tests).  It's certainly prompted some discussion with my wife and sons, and we've been doing some of the tests on the Embrace Autism website: https://embrace-autism.com/autism-tests/  It looks like my suspicion was correct and my elder son and I both score within the range where autism is likely on multiple tests, while my wife and younger son score pretty much bang on the neurotypical average.  For the AQ50, my son and I were slightly above the mean for males diagnosed with HFA (36/38) while my wife had 15.

    What's really positive is that my son seems to have accepted that he may be autistic and that's part of who he is - he's been reading about autism with a couple of the boys in school he gets on well with and they've also been doing some of the tests, and he found that he scored higher than his friend who had an official diagnosis.  We're now talking about going to the GP, as we've found that he can get some additional help if he is formally diagnosed, such as support with exams where he can have the questions read to him through a headset, which he'd find useful.  I also decided to tell my friend, who was very positive about it, and it hasn't made any difference to our friendship. 

    It's still early days and we have a lot more to learn, but thanks again for the warm welcome as I step into the unknown!

  • Hi  

    Happily the previous responders have covered very well most of the things that I might have said.

    If I have a suggestion to share tho' it would be this:

    It seems to me that your post pivots on autism diagnosis and social difficulties.

    I have read that some people have found social difficulties can go both ways post diagnosis.   The reaction of oneself to the diagnosis and what one might learn from it and then how one personally adapts in consequence as able/necessary is relevant.  Also what others learn from it and how they respond.  The former is likely to be something one has a greater locus of control over albeit after what may be a hard period existential crisis based on my personal experience.  (I like others came to diagnosis found necessary to explain "burnout")

    Either way it seems to me that the struggle you describe is social difficulties rather than autism per se (even tho' social communication difficulty is one of the diagnostic criteria).

    The NAS resources on the topic are available via this Autism and communication

    Perhaps exploring the subject of communication and social behaviour and learning some tricks and skills (as long as they are not too onerous) could be something to consider?

    Best Wishes

  • Hello Phil.Squirrel!

    Where to start

    Phil.Squirrel said:
    So my question to anyone who has been diagnosed, particular as an adult, is whether the process is worth it?

    In my experience, yes. However I have seen a lot of people that have felt empty or disappointed following diagnosis. For me it answered so many questions I had about myself and also proved to my family that I am what I believe I am. Ultimately, though, you are totally fine engaging with the Autism community without a diagnosis. I’ve seen it posted here before that something like 90% of people who believe they have Autism prior to an assessment end up being diagnosed with it. So if you think you’re Autistic, chances are that you are.

    Phil.Squirrel said:
    I'm also wondering about my son, who's 17, and I'm pretty sure is autistic too.

    That’s a much harder question, and I think the answer may be it depends on how your son feels about it. I just had one of my daughters (age 7 now) tested a few years ago and she has since accepted it very well. Obviously, our situations are pretty different due to the age differences. If you are going to bring it up to him, I’d start by mentioning that you think you are Autistic. Understanding how it effects you and seeing that you have grown into a responsible, successful adult regardless of it could be a very important thing for him.

    Phil.Squirrel said:
    it doesn't sound like there are any medical treatments for autism, or medication that would help

    No, but if you have a comorbidity such as ADHD or anxiety you could get medicated for that. I have ADHD, anxiety, and depression and medications that assist with those disorders in turn help a bit with some of my Autism traits. Ex. My ADHD medication has actually helped me a bit with socializing, because the brain fog that normally keeps me from socializing is eased a bit. I feel like my antidepressants have also helped in keeping me out of Autistic burnout, as well.

    Phil.Squirrel said:
    Although I do struggle socially in work, I've been fortunate to do alright for myself

    Congrats on doing so well! Work is such a difficult thing for us on the spectrum, so hearing that you are doing fairly well (even if there are some complications) is very uplifting to hear.

    Phil.Squirrel said:
    How can I try and keep a good bond going with him growing up?

    Unfortunately though I have a daughter that is AuDHD (C, age 7) and one that is likely NT (R, age 4), they’re both so young I don’t have a great answer for you. In my opinion, the fact that you are even asking is a great sign that things are going to be alright.

    Sorry for so much text to read!

  • Welcome to the community! One of the best things about this community is we don't judge as we've been judged our entire lives.

    I got diagnosed in September 2024 after a hospital admission in November 2022. My diagnosis hasn't changed anything for me personally. I have always felt different from others growing up, but couldn't explain that difference. Would an earlier diagnosis made a difference? I honestly don't know.

    I also think that I was "in the norm" and everyone liked routines, did things in a certain order, didn't like crowds, etc. This makes me question the validity of my diagnosis as the diagnosis rate is on the increase. (This is a good thing, but what about false positives?)

    I can't comment about parenting neurodivergent vs neurotypical children as I am not a parent myself. Hope you get what you're looking for in this forum! Slight smile

  • Hi and welcome to the community. I'm self discovered and happy to stay that way, but we're all different. Whatever you choose to do, you are welcome to stay here.

  • Welcome to the community and no worries about having to leave because of lack of formal diagnosis.  You can do some online tests like AQ50 or RAADS,  they will give you some more insights into your profile (if you didn't yet). I myself am not diagnosed and this forum changed my life in many ways. I found out that im not the only "weirdo" in this world and its life changing. I also find myself in other people's stories here. 

    Formal diagnosis may be helpful if you need it for work in case if you need some adjustments but your boss does not agree, or specific therapies. Otherwise it may be helpful just for your information.  The situation at work may be tricky, there are aldo many stories of people who got bullied or even made redundant after disclosure. So sometimes it's just better to keep it only fir yourself. I have my adjustments without formal diagnosis,  but I may need it for other reasons. Anyway you can stay in this forum without diagnosis and just connect to other members. 

  • Only you can answer the question.

    If it matters to you, then it's worth it. If it doesn't matter and you are happy then it's not worth it.

    If you are struggling or depressed and want to be sure what to do, then it helps to know what you are up against. There is no pill, potion or magic wand, so improvements come from mental changes and lifestyle adjustments. Having a proven reason to make these changes helps, as does the validation that it is real 

    If you aren't going to change anything and it is just academic interest then don't bother.

    If you want to get diagnosed you are supposed to have more than just traits, it has to significantly adversely affect your life in more than one area.