Everything I know about me that's relevant............

Just collated this list..........honestly I will stop thinking about it soon & getting it down here will help get my mind off it (stops me worrying that I'll forget something!).

Still haven't had official confirmation of my ADOS date (told by phone last week that it's mid July) but will be glad to get it done.

Still can't imagine how ADOS will fill in the gaps, as it focusses on Social aspects rather than RRBs ..................

  • Suggestive of positive DX for Autism
    • Confirmed by NHS diagnostic report:
      • Qualitative impairments in in social and emotional reciprocity and sustaining relationships.
      • Definite difference in sensory sensitivity across Tactile, Taste, Smell, Visual / Auditory and Auditory Filtering.
      • Problems with sensory integration
      • Fleeting limited eye contact & lacked normal eye contact as a child
      • Flat tone of voice
      • Complex head / vocal / eye tics as a child (sniffing, grunting, blinking, head shaking)
      • Known as a "little professor" at primary school (I would correct teachers when they got scientific facts wrong)
      • AQ 41 (T>32), CBS 7 (T<30),
    • Circumstantial / corroborative signs:
      • EQ 16 (T<30),  RAADS-R 145, Aspie Quiz 129ND/86NT
      • Score on the RBQ2a (a new standardised self-report on Restricted and Repetitive behaviours in Adults) is 1.6. This is 0.53 standard deviations away from the ASD score in the reference, and 1.84 standard deviations away from the NT score.

      • Alexithymia
      • Aphantasia
      • Poor Affective Empathy
      • Take statements literally & rarely “read between the lines”. Find intentions hard to perceive.
      • Focus on self & little interest in others.
      • Perseveration & perfectionism
      • Succession of solo, technical hobbies often recurring
      • Chronic anxiety & depression both driven by obsessive rumination
      • Need for certainty; anxiety produced by uncertainty
      • Strong preference for routine (avoid holidays & events, same lunch every day at work)
      • Burnout after working with people
      • Alert to mistakes in detail
      • Skin picking, leg bouncing, chest rubbing
      • Unconscious / conscious throat / nose noises (grunting/snorting/sniffing)
      • Seek refuge in “flow” state through hobbies & interests & creative & abstract thoughts
      • Logophilia (I so wish I had studied Latin at school!)
      • Executive function problems; working memory, planning, impulse control, directing attention
      • Mild synaesthesia
      • Palinopsia
      • Breech birth
      • Sleep paralysis
  • Suggestive of negative DX for Autism:
    • Noted by NHS diagnostic report:
      • Good facial expressions and expressive hand gestures
      • Don’t appear to have difficulty with receptive expression
      • Insufficient evidence of Stereotyped and/or Repetitive Behaviours
      • Unable to determine significant difficulties around rigidity and adhering to routine
      • SCQ score = 11 (T>16)
    • No Prosopagnosia
    • Good judge of character (noted by colleagues)
    • Good Cognitive Empathy & theory of mind
    • Good fine motor skills
    • Good “big picture” / context thinking

EDIT 5th June 2019 - added a few extras to the list and decided I'm going to print out and show my GP when I see her later this month...........

  • Ignorance is bliss. It really is.

  • Thank you, it means a lot that I have found so much in common with others on the spectrum, and almost wish that a "Proposer and seconder drawn from the autistic community" would be sufficient to diagnose a new member! I'm sure that the interactions I've had here, on other forums and in a previous life on Twitter could yield at least twenty or so diagnosed autistic people willing to say "Yep, he's one of us".

    But I get the impression that the process I've encountered starts off on the assumption that you're not autistic and then sets out to prove that assumption, rather than listening objectively and seeking to explain difficulties stated by the patient.

    I fully understand that "Dr Google" is the bane of medical professionals' lives, and similarly self-diagnosis can be founded on confirmation bias which has to be challenged (and in my case, I *want* it to be challenged so that I can be sure) but there seems to be a reluctance to ask "do you have anything else that might fit this pattern?".

  • And so lies the fundamental problem with mental illnesses again. I can't see an effect so it mustn't be that bad (or happening at all).

    Sometimes people get ill, physically ill (wow, I can see you are ill!), but they power through and still turn up to work because of a good work ethic. Does this mean, on the same basis, that they are not ill? Because they are able to appear to function as normal?

    This strikes me as not recognising the huge effort needed to comply, that has led on a couple of occasions to burnout

    A very important point. Whilst you are able to cope in the moment, therefore seemingly not having a negative impact, it contributes to a burnout. So although it may appear invalid in one capacity, overall and in the context of autism, it has a cumulative serious impact. Forcing to comply is related to a burnout which is related to autism. 

    I only know you through a serious of conversations on a forum yet, along with other posters, we seem to be joining the dots more accurately than the professionals??

  • ...not knowing if they could afford to do the 'cool thing', plus arriving the day after the other cool thing finished or having to leave before it started...

    Exactly.   We happened to be in Florida when Elon landed his first rocket back on the pad - so we were there to watch it.   It was something that was in the spreadsheet as a possibility - otherwise we'd have missed it

  • Yes exactly - it seems normal, almost so trivial as to make it not worth mentioning (I'm thinking of my beard picking here). Now wondering what else I thought was trivial and maybe normal.....

    Come to think of it, I probably thought that everyone with a beard would fiddle with it when bored or concentrating, just like everyone with a scab would pick at it to encourage it to come off even if that made it bleed and take longer to heal and potentially leave a scar (not me though 'cos that would be silly!).

  • What kind of lunatic wouldn't plan a trip like that in so much detail?!

    I mean - they'd end up just staying in one place or drifting around missing stuff...

    ...not knowing if they could afford to do the 'cool thing', plus arriving the day after the other cool thing finished or having to leave before it started...

    Scream

    #triggered

    Also, as per IDWCC - spreadsheet for household finances, we had one for our wedding - My mum complained it was being organised "like a military operation", I'd say it was considerably better planned than most military operations!

    The point is, stuff we think is perfectly sensible we wouldn't 'out' ourselves about as being 'this odd thing I do'... because to us NOT to do it would be the odd thing!

  • :-) neither is a spread sheet model of household finances including allowances for changes in RPI, base rate and pay rises.

  • Intelligence and happiness are inversely proportional...

  • So a multisheet Excel spreadsheet for a holiday is NOT normal?

  • We recently went to New Zealand for six weeks in a motorhome... SURELY  not possible for someone with ASD!?

    Hmmm... would the fact months beforehand I had the entire route plotted out, with distances, driving times, points of interest along the route, campsites to stop at (booked in advance) and activities to do (also booked in advance) along with budgets for food, fuel, accommodation and activities (that turned out to be less than 10% off the actuals) have SOMETHING to do with enabling me to do that?

    It seems that even within the 'professional' community there's a lot of dodgy preconceptions about what ASD is and how it really affects people.

    I mean... $hit! I've been living with it for over 4 decades (undiagnosed) and I'M still trying to work it out!!!

  • LOL. Yep, I believe it's not normal either to want to know yourself as deeply as I want to know myself, to have visualised force vector diagrams when I opened doors when I was a teenager, or to wish I could visualise the equations of quantum mechanics in the same way I can visualise vector calculus and Fourier transforms, nor to prefer these significantly to how your cousin is doing on his birthday.

    When I was badly depressed for the first time at the turn of the millennium, I did a serious bit of analysis to discover why I was unhappy and others apparently were carefree, and I genuinely concluded "Happy people have low standards" :-).

  • Ahhhh..... yes, the failure to dig deep enough. "You go abroad, so you can't be autistic!" (But I go to the same room in the same hotel and travel with the same person, go to only one beach and always buy a bacon sandwich from the guy by the second breakwater on the beach).

    The one in my report that niggles me is "You completed a PhD and were able to structure the work yourself. This involved detailed organisation plans." (No, I went to the same lab every day, parked in the same car park, ate the same lunch from the same shop, got stressed if I needed to ask the workshop to make something for me and moved heaven and earth to make it myself instead, and planning consisted of following my nose writing and rewriting software until something worked, then I bought myself a portable computer and wrote it up at home).

    As far as clothes go, I wear the same outfit for as long as I can once I find something I'm comfortable with because the change is annoying (different feel) and if it's not broke why fix it? Every time my wife stresses over choosing something for tea, I tell her that the ideal solution is to pick 13 meals that we love and rotate them in sequence; that way we wouldn't eat the same thing on the same day for ages but would never have to worry about what's next :-).

  • I got chatting to an OCD researcher yesterday - a lot of the things I thought were just sensble are classed as obsessive by NTs.   Things like arriving early to appointments and doing things properly and fully are *not normal*. 

    Who knew?

    After talking to her, I'm having to re-evaluate a lot of my behaviours as it appears NT's sense of 'normality' is way worse than I had imagined.

  • Yes is appears so. Several times in my clinical interview I was asked "But you *could* do it?" when asked about things like changes in routine that would cause me anxiety and stress. It's almost like you have to present as inflexibly as a mechanical robot with hard limits for the symptoms to count.

    So the fact that I can *force* myself to sit in a noisy pub beyond the point where I would naturally choose to leave means that I'm not limited by my aversion to chaotic noise. The fact that I *can* tear myself away from my isolated hobby to socialise with unexpected house guests means that my inner yearning to get back to my solitary thoughts isn't relevant.

    This strikes me as not recognising the huge effort needed to comply, that has led on a couple of occasions to burnout. 

    Because I've learned to cope, I have no problems (rolleyes). 

  • Yeah, also 'stereotyped/repetitive behaviours' - I wear a short-sleeved white shirt, tie and smart trousers Mon-Thu even though my workplace has a casual dress policy... so does this 'count'... my psychologist says 'Yes', on the basis that a Bank Holiday Monday ruins my pattern (I wear a shirt twice) as does not having a shirt available on a 'shirt' day, to the extent I seriously considered being late to work so I could, wash, dry and iron a shirt.

    Equally, my psychologist spoke about a patient who (contrary to common wisdom about people with autism) does go abroad - but they always book the same room in the same hotel... so on the surface they 'don't look autistic' to use that ld chestnut - but it's because they've learned to camouflage...

  • Thank you so much! :-). Yes, I was thinking that I should do a trawl through my previous posts to see if there is anything to add, and you've mentioned a couple there. When I get chance, I'll do an update.

    Yes it's the decades of masking that bothers me............

  • Can I just clarify: Even though you do have routines (as you've stated) because they don't cause significant difficulties it's been dismissed as a symptom of autism? Avoiding going on holiday or certain events and even eating the same thing everyday seems significant to me? If you're able to accommodate and adapt to changes in routine is it not through learnt behaviour through years of masking?

    Original Prankster makes a valid point too

  • This from the 'scalp picking' thread: "OMG me too! I often have to shave it off and start again to level it to the bald patch :-)" indicates repetitive behaviour

    I'm sure I've seen a ton of other 'me too!' type comments from you that reinforce repetitive behaviour and adherence to routine...

    Some of the other 'negatives' or 'no evidence of' are things I think decades of masking would cause...