Hello & questions

Hi,

I'm a 58-year-old man, and only recently have I begun to wonder whether I might have lived my life with undiagnosed autistic (or neurodivergent) traits. 

I’d appreciate perspectives — especially from others who came to these questions later in life.

A bit of background:

  • I grew up in a household dominated by a highly controlling father. My childhood was spent adapting myself to please or reflect him. My mother died when I was 18; my sister passed away a few years later. I was diagnosed with cancer, myself, at 19 - but, was given the all clear. Loss and emotional suppression were part of the fabric of my formative years.
  • As a child I felt like a spectator rather than part of things - something that has stayed with me and increased over the years.
  • I’m very sensitive to sound.
  • I constantly fidget with specific items I keep to hand for the purpose.
  • I get obsessed with specific things eg. Learning an instrument, writing - and pour massive amounts of (solitary) time into doing them. 
  • I often felt relationships and their demise deeply. Sometimes, in my teens, resorting to self-harm to make myself feel better. But, this was never done with a serious intent to injure myself permanently - more a “signal”?
  • Socially, I’ve always struggled. As a child I loathed being forced to socialise in groups. I can be charming, funny and socially fluent. But, it’s a performance that exhausts me. Alcohol became a customary way for me to numb the anxiety at parties and dinners. Over the last eight years most of my friendship group have fallen away. I might quarrel with a friend then avoid them. This would lead to me not going to “events” because the anxiety was overwhelming that they would be there and I would experience hostility. Eventually, people stopped asking. It’s a relief to no longer go to gatherings.
  • With many of the people I called friends, I started to question why they were in my life. I basically reflected their behaviour back to them i.e. they got what they wanted from me - but I realised it was a one way street. I began to consciously stop doing that a while go and many people have gone with it.
  • Other than friends, I generally find social interactions hard. They leave me feeling “good” I that I have been with people. But, often exhausted from having to interact.  I prefer one-on-one conversations and find small talk meaningless/difficult.
  • I find it hard to empathise with people. I know how to “perform” empathy. And I know when it needs to happen and that it’s a general good. But, I don’t really feel it much.
  • I had some form of nervous breakdown 8 years ago. Largely unnoticed by those around me. I had therapy for several years which helped but no conclusions were reached.
  • I am highly educated and functioning from that point of view. I’ve been a free-lancer in for 35 years. No one (including my partner and 2 children) would say that there’s anything visibly wrong with me. But, my increasing isolation, depression and social phobia would suggest otherwise. Also, over the years, I have had suicidal thoughts. Happily, though, those have abated.
  • I feel I’ve spent much of my life maintaining an expectation other people have of me, which goes way back to childhood. Only in quite and rare moments do I seem to recognise myself and be at peace. This had led to a lifetime of feeling that I’m malfunctioning in some way and I should be able to “solve” myself. But, that’s never happened.

Does any of this resonate with others here? Would it be worth exploring further, possibly through formal assessment?

Thanks for reading.

  • One of the main points for me is to understand if the depression is coming from overload/burnout from ASD or something else.

    This makes a difference to how I approach the future.

    It also makes a big difference to my past and whether I made some huge mistakes which very negatively impacted me. This whole topic has caused me some significant pain.

  • Thanks for your response. If I take it further, it would be mostly for my benefit - i.e. to take the pressure off myself.

    As you say, "confusing". And one hopes the feeling of things not being right will go away. But, it doesn't. I'm not looking for it to be the case. But, it's amazing how much things have changed in the last 20 years. And people have started to recognise we're not all wired the same way.

  • Hello. You are a similar age to me.

    Life has felt like a big endurance test.

    I reached a crunch point in January and could no longer put off seeing someone. I kept telling myself I was alright and burying stuff, it wasn't that bad, etc. but I was very confused about things.

    I tried a counsellor, available for free through work, but it was clear to me I needed something more.

    I screwed up the courage and contacted a clinical psychologist privately, after a few false starts which almost dissuaded me.

    I did not think I am autistic I thought I was depressed for some reason, but they thought I likely was. I did the AQ-50, main screening test, a score above 32 is clinically significant.

    I was in denial for a week or 2, did some research to try to disprove it, but then started to come round to the idea. I did loads more tests, all the ones on embrace autism site, which all were too high to ignore (masking one was interesting and hard to answer), then decided I had to know for sure as it prompted me to re-evaluate a lot of my life, in a negative way.

    So I paid to get tested. Will know the answer in 2 weeks.

    Either way is problematic but at least I will have a better idea about myself. It was suggested to me 28 years ago and I rejected it. If I'd done something then it may have saved me some trouble.

  • Welcome to you.

    Your enquiry is familiar to many of us here and there is much information to share by us all.  Below are a few observations:

    a) Each area of the UK is slightly different (postcode lottery) in terms of to what extent there are social and support services accessible to Autistic older adults (and whether or not you require a formal diagnosis in order to be able to access those opportunities).

    Maybe if you are able to research what is available in your local area; that might help shift the balance in your own estimation of whether a formal diagnosis would aid your situation - now and in the future.

    You may find some services are accessible by self referral / self realisation - whereas, others require you to have first received a formal diagnosis.

    b) Something else which might prove flexible and supportive in a subtle manner - not least, as you can choose when / how to deploy it (from a disclosure perspective) - is to perhaps consider exploring whether the Sunflower Hidden Disabilities Lanyard etc. might better inform people's behaviour around you in public places - in support of you in particularly challenging environments.

    https://hdsunflower.com/uk/insights/post/for-people-with-non-visible-disabilities

    c) Also, both the National Autistic Society and many Counties have available an Autism Alert / identification card - which offer a more discreet way of letting a service provider understand you might appreciate some additional consideration / processing time / reasonable adjustments / you need a trusted person to be contacted to assist you.  Such a card can be useful if you are finding it difficult to explain your situation for whatever reason.

    d) When it comes to trying to improve access to navigating Hospital healthcare; people sometimes find using the National Autistic Society My Health Passport is helpful (the document can form part of you self advocacy):

    https://www.autism.org.uk/advice-and-guidance/topics/physical-health/my-health-passport

    Your local Hospital Patient Advice and Liaison Service (PALS) Team will likely be able to help you e.g. to obtain the correct Clinic / Secretary email address - to enable you to advance provide the Clinician with a copy of your My Health Passport in preparation for you attending an appointment.

    e) Sometimes your local NHS Health Trust or Integrated Care Board (ICB) might have their own Neurodivergent Passport - often to prompt around necessary environment reasonable adjustments - usually you do not need a formal diagnosis to bake use of their Passport.

  • Thank you. That's really helpful.

  • Hi and welcome to the community!

    Many of us here are "late realised" and/or "late diagnosed", so you're in good company! :)

    Whilst the information that you've shared seems like it could be consistent with autism, we can't offer medical advice here, and the professionals involved in assessments also consider a lot of additional information.

    If you haven't yet seen them, you might like to read through the various resources in the NAS's diagnosis hub:

    NAS - diagnosis hub

    They cover all stages of the process, with each section containing several articles relating to that stage:

    • Before diagnosis
    • Assessment and diagnosis 
    • After diagnosis 

    For example, these articles (from "Before diagnosis") would perhaps make for a particularly timely read:

    NAS - Signs that a child or adult may be autistic

    NAS - How to request an autism assessment

    If you live in England, you might particularly like to read about requesting an assessment via Right to Choose (which enables access to private providers who might have shorter waiting lists than the NHS, but with your referral and assessment still fully funded by the NHS).

    Some examples of Right to Choose providers are listed here, for example:

    ADHD and ASD assessment – Right To Choose

    The NAS articles include links to some screening questionnaires that you might like to complete, to get a better idea of whether your suspicions might be correct. You might prefer to use the website below for this, rather than the versions linked in the NAS article.

    The site provides some very useful commentary for each questionnaire, and also enables them to be completed online (with scores calculated for you), saved as PDFs and - if the results support your suspicions and you decide to seek a formal diagnosis - printed off to take with you to the GP.

    The AQ-10 or AQ-50 seem to be the most frequently used / required by GPs in support of NHS referrals. (RAADS-R might also be helpful, although some recent research has thrown doubt on its validity as a screening tool):

    Embrace Autism - screening tests