New here, am I in the right place?

My apologies if I am stumbling into something that doesn't apply to me. I don't have a diagnosis at all and don't know much about autism. Reading some of the posts on here my first thought was "it's another group I probably won't fit in with". Hmmm. I thought I'd list a few things and see if anyone relates at all before seeking any other advice.

My wife has shared with me a paper listing autistic communication styles and what they mean. A lot read like they are about me. I am pretty self-accepting these days (probably comes with age) and have just seen this as the way I am rather than being part of a spectrum or whatever. These include my honest, helpful and direct approach being misinterpreted by others as rudeness, for example. I'm not great at being fair in conversations and will readily dominate when it's a subject I know about, and I interrupt sometimes even when I try not to. Stuff like that. But I'm right, dammit! I feel uncomfortable if I haven't imparted every detail I know on a subject. I do miss some subtle clues and don't see the point of small talk. I like people sometimes but like there's a time limit if you know what I mean? I'm an over thinker. I am anxious about minor things which affect only me but cope well with major things which affect people I care about. I can see the big picture but I can also dive in to the tiniest detail for hours without seeing anything at all in between the two extremes. I value autonomy very highly, perhaps too much. I am drawn to order and get frustrated when others don't follow rules. I also don't like following rules. If I start a new task I need to reinvent the wheel and devise a novel way of doing whatever it is.

However, I don't think I have a problem with eye contact. I don't do repetitive movements or anything like that, though I do like to listen to the same track on repeat (all day sometimes) if that counts?

I have only scored 29/50 on the online spectrum quotient so it isn't conclusive that I am autistic, though I think I probably have some of the traits.

I'd appreciate any suggestions from you on what I should do / research next. Completely open to the possibility I'm just socially awkward and weird so don't hold back if that's what you think.

Thank you

  • Consider how much of your "traits" affect your daily life. My perspective is that some traits are indeed simply behaviour within a range of human being. Yes I listen to music tracks repetitively but it poses me no problems. I am a firm believer we are a product of our environment so if you have a relatively "good" set up you might not encounter the stresses as much as other autistic people. However, autism IS a communication difficulty / difference when compared with the predominant neurotype and its this which can pose huge problems. It might help to read up on "double empathy" which explains why there's often a dissonance in communication for both parties. It might also be worth reading up sbout executive functioning difficulties as this is often something neurodivergent individuals struggle with, and maybe read about monotropic thinking styles as this is a common aspect.

  • I'd say that none of the real you is diminished *by* autism, but rather that you have been authentically you and are are autistic to your core. It took me a while to get myself out of the headspace that our state of being is an 'ism' one has, like a condition - believing so is a side effect of the  inevitable neurotypical-accomodating lensing of all the initial academic (then eventually mainstream) language around the autistic experience.

    Most likely, the quiet, introverted you who functions best at home is you at your truest. It's then the 'out there' evnvironment which requires you to reflexively mask (and always has) to survive it and to put neurotypical people at ease (as they are the majority, we learn early in life to accommodate them at our own expense). The 'reflexive' part is crucial, as you're not being wilfully deceptive, just needfully functioning as you always have - your form of breathing (or trying to) the oxygen of practically another species. 

    I've been a little more reductive with my language than I'd like there, but in the interests of keeping it brief (a rare and imperfect attempt at conciseness from me!)...

  • There is no quick fix or one solution fits all. We all have different traits and these will affect each of us differently.

    Remember you are allowed to not do things that make you feel uncomfortable. Embrace the change and try to just be you. It make time to unravel all those years of not knowing and your coping mechanisms.

    I have said before that diagnosis (or self diagnosis) is like peeling an onion. Every time you think you have peeled back a layer there is another one. I don't know how you are with onions but there maybe some tears!

    Eventually the 'what ifs' will slowly reduce in number as you realise you have always been autistic but just didn't know or realise it.

    As Forest Gump says about life being a box of chocolates, you never know what you will get!

  • Thanks, early 50s. I have kinda arranged life around my needs which means I don't experience a lot of the downsides. For example, I deliberately live in a quiet place with little disturbance, I don't seek out social contact and work from home in a job which gives me a lot of control over my day. So I don't "suffer" as such. I do feel I am missing out on things. Avoidance can bring its own anxiety!

    One thought I can't get away from is what is left of "me" if so much of my behaviour is explained by autism? I honestly thought it was just me. 

    My brain keeps reminding me of things I've done in the past (e.g. unusual reactions) which are probably best explained by autistic traits and I now wonder how I'd have dealt with things without them.

    Not sure how a diagnosis would help at this point, more interested in learning about what makes life better. Reading about masking makes me think I can train myself out of how I usually behave. This might not be the right direction at all of course!

  • For what it's worth, I didn't think that I stimmed (repetitive movements) until after I was diagnosed and then in recent months I realised:

    • I pick the backs of my fingers with other fingers from the same hand.
    • I tap out music - or do subtle finger movements.
    • I bounce my leg
    • If I am not being self-conscious, I do actually rock from side to side (not forward/backward) in stressful situations where I am standing up.

    It may also be worth reading up about masking/camouflaging. Because if you are autistic and got to adulthood, then you most certainly will mask in one form or another.

  • Hi Samuel and welcome to the community!

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

    We can't offer medical advice here, unfortunately, and the professionals involved in assessments also consider a lot of additional information beyond the screening tests.

    If you haven't yet seen them, you might like to read through the various resources in the NAS's recently revamped 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 and decide to pursue a diagnosis, then you might 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

    You mention having already completed the Autism Quotient test (also referred to as AQ-50) with a score that suggests you might be autistic.

    If you haven't already visited it, you might like to check out the website below, which provides very useful guidance and commentary for each screening questionnaire, and also enables them to be completed online (with scores calculated for you) and saved as PDFs. If the results support your suspicions and you decide to seek a formal diagnosis, they can then easily be 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

  • Hi and welcome to the forum. The way you have described yourself sounds similar to me, although I scored 42 on the AQ50. Maybe you have learnt to mask or adapt, which has affected your score. Search online for the CAT-Q test which will show how much you camouflage autistic traits.

    Don't worry about not having a formal diagnosis (I don't) - everyone is welcome here.

  • Welcome

    I think you may be in the right place. What you have written sounds very much like late diagnosed autism to me.

    I do not know how old you are but I was diagnosed in my fifties. Years of masking and thinking something was not right with me although I have had a sterling academic career but socially very awkward.

    You do not need a formal diagnosis these days but helps if you need accommodations at work if you have a supportive employer / manager.

    So hang around, read up on posts, ask questions and post yourself. Remember that we are all different here but share the A-word in our being

  • Hi Samuel50. Sounds like you fit right in here.  :-) Not everyone here has a formal diagnosis, and online self-assessment tools can be a bit of a blunt tool though your score does seem to lean towards the autistic anyway. Hope this post and others that I'm sure will be along momentarily will help reassure you that you've found your tribe, so to speak.