40 out of 50 - worth getting tested?

Hi all,

I've signed up to learn more about the autistic spectrum since my partner suggested I may have autistic tendencies.  I just did a test online and scored 40 out of 50 which is quite high.  If you can be hassled to read my not very short bio below then I'd very much like to hear if you think it might be worth getting tested?  I'd love to get to the bottom of my life long malaise as I'm 49 and still in the deep end learning how to stay afloat.  One difficulty I have is understanding where co-dependency might overlap with ASD.  I thank you in advance for any advise.

Absorbed in my own world

 As a child I would experience significant distress being pulled out of my fantasy play world by the demands of my single mother.  There came a point when I resigned myself to those demands and cut myself off from the world to preserve the inner fantasy life.  So I would perform tasks or chores quickly and efficiently in a dazed state of detachment from the task so I could dive back into my private world from where I had left off after running back upstairs to continue in my play.  

 In my twenties I was self conscious, self absorbed and depressed.  I alienated myself from everyone and became extremely isolated, seeking instead the solace of nature alone in the countryside instead of the presence of others.   I have always felt a gap between myself and the world at large, a large empty hole where I have shied away from the stress of social expectations and conventions.

 I feel acutely the distress of letting people down in taking care of my own needs, so as I have aged I've never fully committed to anyone or anything because of the huge amount of time I need to myself to process everything that goes on in my head and in my relationships. 

 In recent years my depression has become so severe as to be life threatening - i.e my suicidal ideation has taken a hold of my imagination as the only possible course of action to resolve the suffering I experience on a day to day basis.  I find myself incapable of advancement in the world and have become emotionally unstable and vulnerable.

 Distress in relating

 I find intimacy extremely difficult and fret over social interactions.  This has caused significant fractures in my relationships where I pull out of social engagements because of intense and overriding fears of social interactions. No one understands this about me because my mask is so very sophisticated and fluid as I appear to be charming and socially conversant.  Relating issues come to the fore when in crowds, such as cinemas, shopping centres or pubs, where irrational fear consumes me to the point of distraction, irritation and anger - I often feel backed against a wall by the loud or noisy environment that crowded places tend to be and become focused on getting from A to B quickly and with minimal disruption.  In these situations I cannot relate to another in a rational manner at all. 

 I find myself repeating back to people what they say to me.  When I'm self conscious about it my response can appear to be an unintelligible rambling as I scramble to sound like I have something intelligent to say to maintain my carefully constructed social veneer. I feel pressure to respond but never know what to say.  This leads on to:

 Mental blocks

 I experience difficulty finding the right words to express myself and people often interrupt or talk all over me which causes me significant stress.  I've always thought of myself as a slow thinker and late developer.  I (and almost everyone I know) consider myself a poor communicator as I mull things over and procrastinate for so long that I never respond. 

 I think in patterns which has enabled me to become a highly proficient musician (but I can't read music) and drummer and I find safety in repetitious activities like number crunching, calculating vectors in navigation and astronomical measurements.  I seek to understand the rhythmic nature of patterns and cycles through number and I have a slight OCD that is apparent in my teeth grinding.  I like woodworking as it involves planning and careful measuring and I get a sense of satisfaction from creating something real.  More than anything I'd like to make and sell my own large format cameras. 

 I enjoy compiling research into visually useful charts and graphics and prefer to spend time crafting detail.  At the moment I work alone at home doing research and compiling data for a friend who earns enough to support me as an employee doing the tedious things he hates doing. 

 Glossing over things or taking short cuts distresses me. I think of myself as unimaginative and find it hard to see beyond the immediate future - I seek certainties that don't exist and prefer to stay within the confines  of my limited self definition.  I've never had a long term plan because I can't seem to take care of the present.  Hence at 49 I have no security, no home of my own and no savings, just a lot of wasted talent and potential.

 For 15 years I was addicted to online gaming as a way of escaping and enjoyed the repetition and reward that has been ultimately destructive.  Before the advent of computers I would spend that time absorbed in playing the guitar, often up to 8 hours a day, and reading non-fiction books (mostly self help books of one form or another).   

 I'm a very good mimic and have learned to respond 'correctly' for the most part but with the resulting loss of an authentic response; I'm a people pleaser because if others are at ease then I am too but I have lost my soul in doing so.  

 Other strange stuff

 Sirens or other loud noises make me emotional unstable - I feel distressed, as do soap operas which I really detest.  (But I'm not sure that would be considered a symptom of autism :-))

I've never learned to add or subtract properly.  I add things up using set patterns in my head - I count in sixes.  

I also edit manuscripts for authors.  Without training I appear to be a natural at it.  I find myself much much more eloquent in writing than in speech as I have the time to compose my responses.  Often when I speak I forget a word and come to a grinding halt.  This distresses me considerably and I feel traumatised by it. 

I avoid talking on the phone when ever possible.  I have an irrational dislike of it.  

I can mull things over for so long that people think I have forgotten or am being rude.  

Intimate or emotional conversation is very difficult as I often come up with a blank as things take so long to process and then express in a suitable way.  This causes significant distress in my relationships where it appears that I don't care - but I truly don't know what to say.  

Communicating emotions or feelings never feels right, it's like I never really know what I'm feeling. I am forever conflicted and find it very difficult to access my feelings particularly when under the stress of being forced to respond to someone.  I just want to run a mile and although I make every effort to stay with it, nothing changes.  The greatest complaint from my partner is that I'm not here.

I can't sleep with synthetic fibre bedding of any sort and I can't wear wool clothing. I find it excruciatingly unbearable.

I've only ever had one or two friends at a time, I can't handle more as I feel overwhelmed.

I was a slow learner when it came to reading as a child.

Parents
  • Well... I could have written so much of that.  Lots of identification.  I scored 42 out of 50.  I finally got my diagnosis almost 3 years ago, aged 56.

    I would always...always...encourage people to go for diagnosis - even if it isn't having a direct impact on your life now (and it's bound to be, I would think, in some way - I really can't think how it wouldn't be).  People say they're afraid of labels.  But aren't we labelled, anyway?  Fastidious.  Slow.  Unfocused.  Rude.  Anti-social.  Self-centred.  The list goes on and on.

    I struggled with mental health conditions from my early 30s and was never able to get to the bottom of it all.  My diagnosis was the solution.  It was like the tumblers all finally fell into place in the Enigma machine in my head, and the code was broken.  Everything - my whole life - then made sense to me.  Since my diagnosis, my mental health has actually improved - because now I know there are reasons for things.  I also feel more confident, and more comfortable with who I am.  I no longer feel like a life failure.  There's nothing wrong with me.  I'm different - that's all.

    I was seeing a therapist at the time, who made the recommendation to my GP that I should bypass mental health services (who were never really helpful, and were in fact more of a hindrance to me) and go directly to the county autism unit.  The process from beginning to end took a little over two years.

    Others may say otherwise, and ultimately only you can decide - but I definitely say go for it.  If you feel you have a condition - any condition at all - you have a right to be taken seriously about it and to ask for a diagnosis if you wish it.

    If you want any further advice, check out this link:

    All about diagnosis

    All the best,

    Tom

  • Thanks for your response Martian Tom.  I think labels are useful in this context because it gives some closure. You nailed it on the head for me -  I'd rather have a label that is enabling than one that is disabling (like lazy, self-centered etc).  But two years! Crikey! 

    I guess I'll have to broach the subject with my therapist but I'm worried they will question me on it and I always fail to explain myself fully when people question me and I end up feeling stupid.  I sometimes wonder if I wasn't such a convincing high functioner and had more obvious/visible traits I might have got some help earlier on in my life - but then there's no point beefing about such stuff.  But your response gives me hope, thank you.

  • That's good.  I'm pretty convincing, too - or, at least, I was up until diagnosis.  I don't feel so much pressure to 'mask' now, so generally I don't. 

    Definitely bring it up with your therapist.  Mention your AQ score.  Maybe write down in quiet moments the things you've mentioned here and bring it all up that way with your therapist.  If they're good at their job, they should show you the respect of listening and discussing.  I had it dismissed out of hand by a mental health psychiatrist, who told me that if I was autistic, I'd be flapping my hands and moving around the room restlessly.  Even among so-called qualified professionals, there's a great deal of ignorance when it comes to autism.

  • I feel bullied very easily now by people with strong reasoning skills
    Always been like that.  Even if I'm sure of my ground, if I'm up against someone more assertive or dogmatic - even if they're talking utter rubbish - I end up feeling in the wrong, and bowing my head - and just shutting up.  Which always feels like conceding to them and their 'greater' knowledge.

    I am exactly the same.

    Unbelievable!

    I thought that I was only one like this but I am not alone.

    Again, that's happened to me.  An acquaintance of mine - he had rather a high opinion of himself, and I always got the feeling he cultivated 'friendships' because of what he could gain out of people - once invited me to a party at his house.  I thanked him, but was honest in explaining that I find such occasions difficult.  I even explained why.  I said, though, that I would consider it.  It was as if I'd said nothing at all.  He was persistent about it.  In the end, in exasperation, he sent me an email to the effect 'Fair enough... if you want to stay an ungrateful hermit for the rest of your life.'  Really glad I let that acquaintance drop!  Judgmental creep.  But here's the kicker: he was a local authority Educationa

    I guess, if one does not have an understanding friend then it is better if one does not have a friend at all.

  • OMG! That's so funny!  It's always the one's who you'd expect to know better. :-)

  • I feel bullied very easily now by people with strong reasoning skills

    Always been like that.  Even if I'm sure of my ground, if I'm up against someone more assertive or dogmatic - even if they're talking utter rubbish - I end up feeling in the wrong, and bowing my head - and just shutting up.  Which always feels like conceding to them and their 'greater' knowledge.

    I remember my best friend once insisting I go to the pub with him and his friends and all my usual strategies failed against his insistence

    Again, that's happened to me.  An acquaintance of mine - he had rather a high opinion of himself, and I always got the feeling he cultivated 'friendships' because of what he could gain out of people - once invited me to a party at his house.  I thanked him, but was honest in explaining that I find such occasions difficult.  I even explained why.  I said, though, that I would consider it.  It was as if I'd said nothing at all.  He was persistent about it.  In the end, in exasperation, he sent me an email to the effect 'Fair enough... if you want to stay an ungrateful hermit for the rest of your life.'  Really glad I let that acquaintance drop!  Judgmental creep.  But here's the kicker: he was a local authority Educational Psychologist!

  • That's really interesting Tom and sounds so like me too.  I feel bullied very easily now by people with strong reasoning skills because a lot of the time I just need to say no so I can have time to assess how I really feel about it. People are so demanding and impatient and often don't take "I need to think about it" seriously.  But then again I need time to think about the most basic of things :-/

    I remember my best friend once insisting I go to the pub with him and his friends and all my usual strategies failed against his insistence and I got volcanic as the only strategy left!  But that's not so difficult to understand whether you're NT or neuraly divergent i guess.

Reply
  • That's really interesting Tom and sounds so like me too.  I feel bullied very easily now by people with strong reasoning skills because a lot of the time I just need to say no so I can have time to assess how I really feel about it. People are so demanding and impatient and often don't take "I need to think about it" seriously.  But then again I need time to think about the most basic of things :-/

    I remember my best friend once insisting I go to the pub with him and his friends and all my usual strategies failed against his insistence and I got volcanic as the only strategy left!  But that's not so difficult to understand whether you're NT or neuraly divergent i guess.

Children
  • I feel bullied very easily now by people with strong reasoning skills
    Always been like that.  Even if I'm sure of my ground, if I'm up against someone more assertive or dogmatic - even if they're talking utter rubbish - I end up feeling in the wrong, and bowing my head - and just shutting up.  Which always feels like conceding to them and their 'greater' knowledge.

    I am exactly the same.

    Unbelievable!

    I thought that I was only one like this but I am not alone.

    Again, that's happened to me.  An acquaintance of mine - he had rather a high opinion of himself, and I always got the feeling he cultivated 'friendships' because of what he could gain out of people - once invited me to a party at his house.  I thanked him, but was honest in explaining that I find such occasions difficult.  I even explained why.  I said, though, that I would consider it.  It was as if I'd said nothing at all.  He was persistent about it.  In the end, in exasperation, he sent me an email to the effect 'Fair enough... if you want to stay an ungrateful hermit for the rest of your life.'  Really glad I let that acquaintance drop!  Judgmental creep.  But here's the kicker: he was a local authority Educationa

    I guess, if one does not have an understanding friend then it is better if one does not have a friend at all.

  • OMG! That's so funny!  It's always the one's who you'd expect to know better. :-)

  • I feel bullied very easily now by people with strong reasoning skills

    Always been like that.  Even if I'm sure of my ground, if I'm up against someone more assertive or dogmatic - even if they're talking utter rubbish - I end up feeling in the wrong, and bowing my head - and just shutting up.  Which always feels like conceding to them and their 'greater' knowledge.

    I remember my best friend once insisting I go to the pub with him and his friends and all my usual strategies failed against his insistence

    Again, that's happened to me.  An acquaintance of mine - he had rather a high opinion of himself, and I always got the feeling he cultivated 'friendships' because of what he could gain out of people - once invited me to a party at his house.  I thanked him, but was honest in explaining that I find such occasions difficult.  I even explained why.  I said, though, that I would consider it.  It was as if I'd said nothing at all.  He was persistent about it.  In the end, in exasperation, he sent me an email to the effect 'Fair enough... if you want to stay an ungrateful hermit for the rest of your life.'  Really glad I let that acquaintance drop!  Judgmental creep.  But here's the kicker: he was a local authority Educational Psychologist!