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Could I be neurodivergent?

LynnG

Hello all. I hope this is ok to post, I’m 47, female and at a point that I’m really trying to figure myself out properly. I’ve been looking into neurodivergence but have been put off my family members discounting it as “fashionable”. I’ve typed a (very long!) list of traits and wondered what you think? Does any of this resonate? Any advice would be appreciated.

  • Hyper focus on one thing and can’t rest until achieved, impatience, like an itch
  • Procrastination on big tasks
  • Very difficult to relax, brain on fire / fizzing
  • Research everything in huge detail
  • Detail focussed to the point of obsessive
  • Always tired. Have always fallen asleep in the afternoon since very young age, often on floor
  • High achiever at school
  • Often found myself sitting alone at school
  • Failed at uni, hated my time there, struggled to fit in, or to focus. Very few friends and even they didn’t become close
  • Tricky to make friends, very selective, hard work, tough at school/uni/work
  • Always called aloof or resting *** face
  • Cannot cope with fiction/imagination/visualisation
  • Never been a bridesmaid
  • Hide in bed, always have done, always exhausted, since very young/ afternoon naps
  • Untrusting of what people say to me, looking for nuance on what lies behind
  • Told that I “have to learn to take a joke”
  • “Lacks focus and direction”
  • Anxiety and depression diagnosed 2000 but was it really that?!
  • Addiction / teetotal since 2016
  • Dopamine seeking, impulse buys, snacking, scrolling
  • Feeling lost, haven’t found who I am but working on it now
  • Can’t concentrate on playing with kids /books etc have to be doing more than one thing
  • Rejection sensitive to the extreme
  • Like to stick to rules and get upset when others don’t, like queuing etc
  • Low self esteem
  • Horribly sensitive to loud noises, social settings, crowds, overwhelm
  • Can’t cope with people talking in class (either at school or as mature student)
  • Worry what others think of me constantly and adjust behaviour to suit
  • Converse with humour and charm to cover being shy/anxious - masking?
  • I appear very confident and outgoing
  • Can’t cope with changes in plans/christmas!
  • Emotional meltdown over seemingly small things
  • Repeat conversations over and over when alone, out loud or in head
  • Plan conversations, repeat out loud over and over
  • Not hyperactive at all
  • Don’t want anyone in my home - find this incredibly stressful
  • Perfectionism and perceived judgement if I’m not perfect
  • Blame myself for everything
  • Brain feels actually fizzing until I write something down, tick a box, achieve a task.
  • Used to cry constantly as a child, looked miserable in photos, became a family joke that I was grumpy
  • Felt choked up, like I couldn’t talk as a young child
  • Excitement from maths, countdown! New maths books
  • Capital cities and airport codes, almost thrilling
  • Would rather deep conversations than small talk.
  • Prefer one on one conversation to group
  • “Grumpy Bear” my childhood toy - given to me because I was always crying / grumpy - pigeon holed
  • I hate people making assumptions about me without even getting to know me
Parents

  • There is nothing 'fashionable' about neurodivergence. Mere fashion does not make people wade through the obstacle course and ridiculous waiting times that is the NHS route to diagnosis, nor pay the very considerable sums of money needed for a private assessment. A real need to find answers to lifelong issues is what drives people to seek a diagnosis.

    My advice would be to take some online autism tests. AQ10 and AQ50 (sometimes called just 'AQ') are the most commonly used by clinicians in this country, but the RAADS-R seems to be more definitive. They can be found here:  https://embrace-autism.com/autism-tests/
    If you score in the autism range it will give you more certainty about following up on a diagnosis.

  • in reply to Martin
    Martin said:
    but the RAADS-R seems to be more definitive

    Recent research - involving NHS autism assessments - has thrown doubt on its validity:

    "the RAADS-R was not able to differentiate between service users who receive an ASD diagnosis after full assessment and those who do not.

    When used as a self-report tool, the RAADS-R had no clinical value."

    The Effectiveness of RAADS-R as a Screening Tool for Adult ASD Populations

  • in reply to Bunny

    That is because the RAADS-R cutoff  (>65) has been set, admittedly by the developers, at a ridiculously low level. I have an ASD diagnosis and scored 167. Had the testers set the cut off at a more reasonable level, say 100, the predictability of the test would, obviously, improve. Those scoring 65 and over have a 34.7% chance of receiving a clinical diagnosis. Increase the cut-off value and the test becomes automatically more predictive with no changes in the wording of the test. "Negative predictive value (NPV) determined that 100% of those who did not score above the threshold did not receive a clinical diagnosis", which is in itself useful. 

    The test is not at fault, it is the over-optimistic threshold level that most definitely is.

Reply
  • in reply to Bunny

    That is because the RAADS-R cutoff  (>65) has been set, admittedly by the developers, at a ridiculously low level. I have an ASD diagnosis and scored 167. Had the testers set the cut off at a more reasonable level, say 100, the predictability of the test would, obviously, improve. Those scoring 65 and over have a 34.7% chance of receiving a clinical diagnosis. Increase the cut-off value and the test becomes automatically more predictive with no changes in the wording of the test. "Negative predictive value (NPV) determined that 100% of those who did not score above the threshold did not receive a clinical diagnosis", which is in itself useful. 

    The test is not at fault, it is the over-optimistic threshold level that most definitely is.

Children
  • in reply to Martin
    Martin said:
    That is because the RAADS-R cutoff  (>65) has been set, admittedly by the developers, at a ridiculously low level. I have an ASD diagnosis and scored 167. Had the testers set the cut off at a more reasonable level, say 100, the predictability of the test would, obviously, improve. Those scoring 65 and over have a 34.7% chance of receiving a clinical diagnosis. Increase the cut-off value and the test becomes automatically more predictive with no changes in the wording of the test.

    That doesn’t follow from the findings. Raising the cut-off would only make the test more predictive if higher scores were meaningfully associated with getting an ASD diagnosis. But the study found the opposite:

    • Median score of those who were not diagnosed as autistic: 154
    • Median score of those who were diagnosed as autistic: 138

    So the finding wasn’t that the cut-off was too low. It was that the RAADS-R didn't meaningfully separate the ASD and non-ASD groups. So raising the cut-off wouldn't have obviously improved its predictive value.

    Martin said:

    "Negative predictive value (NPV) determined that 100% of those who did not score above the threshold did not receive a clinical diagnosis", which is in itself useful. 

    The test is not at fault, it is the over-optimistic threshold level that most definitely is.

    The NPV was based on one person - the only one who scored below 65 - so I’d be cautious about placing too much weight on that.

    That also sits alongside their finding that there was only a 3.03% specificity in detecting the absence of ASD in those who didn't receive a clinical diagnosis.

    All of this explains why their conclusion was: “When used as a self-report tool, the RAADS-R had no clinical value.”