Examples of Repetitive Behaviours / Insistence on Sameness that led to a positive diagnosis

Hi all,

I'm still digging around trying to understand what sorts of things are counted as meeting threshold for RRBs / IS in an autism diagnosis. Please note that I don't intend to fake any at my upcoming ADOS! What I'm after is some examples that allow me to settle the question in my mind that wonders if my clinical interview missed RRBs / IS that I *do* have, but aren't the stereotypical "obvious" ones.

I don't want a positive diagnosis if I'm not genuinely ASD, but neither do I want a negative diagnosis if I *am*.

Apart from the minor success I've had in discovering the RBQ2a, I'm drawing a blank in my internet based research.

  • I would like to point out some behaviours that people, especially neurotypical assessors, may not be aware of. Which are repetitive computer related tasks. I have been using a computer and internet since the early 1990s, and developed these obsessions as a child. Note: Most of which are crossed-over with my OCD, in systematizing.

    • Bookmarking and organising web pages into grouped folders. Many times rarely or never revisiting the them again.
    • Organising computer files in to folders (I hate random files in the root dir.), using seperate partitions, and using structured naming convensions.
    • Obsessive interest in downloading and cataloguing images -- variations of the same item (now replaced with Pinterest, prior to which was Tumblr).
    • Proudly maintaining a collection of my various interests (audiobooks, music, movies, TV shows -- legally purchased) :D
    • Can't start the morning until I eat cereal while watching an episode from a TV show I rewatch, religously.
    • Encylopedic obsession - Reading Wikipedia, research papers or any factual information (where one reference leads into another to form a compendium of knowledge). This can lead to reading into the early morning, by which point I have already amassed a new list of books to want to read. --- My caveat however, is that I exhibit working memory problems, so I can't remember a lot of what I read without using memory "tricks" (thus my bookmarking behaviour).
    • All time spent on computer or phone (internet).  ~ every hour of the day, then into the early morning. >10 hours. If and when I do eat meals it will be in front of a screen watching a video. I also only eat in my bedroom because it feels safe and away from disturbances. I find it very challenging to eat at a table with people, esp. if the people are prone to being talkative.
    • Repetitive changing of wallpaper, colour theme or LED lighting profile. Not just on PC, but also for phone (Android launcher settings).
    • Repetitive obsession with manually reinstalling operating system and reconfiguring everything in Linux using a terminal.
  • For what it's worth my deep-diving into all things ASD since my diagnosis has made me leery of CBT as potentially harmful rather than helpful.

    My psychologist has suggested ACT (Acceptance & Commitment Therapy) as what she uses with ASD patients.

    A quick Google brings up some interesting comparisons and I think reinforces that ACT is probably 'better' for people with ASD

    http://empathiccounselingandtherapy.com/blog/depression/act-vs-cbt-difference

    this one gives a nice analogy using quicksand

    https://www.getselfhelp.co.uk/act.htm

  • I totally can't handle expected things not happening or things happening unexpectedly. My reaction can vary from just feeling a bit thrown to full on losing the plot over it, luckily the latter of the two only happens very rarely. The reaction is definitely caused by rigidity of thinking patterns and a need for predictability, our brains simply can't move on and adjust to changes that quickly.

  • I wonder the same sort of things. On so many occasions I *cope*, but what mental energy does it burn? When I get back to my desk and the voicemail light is on on my desk phone. When an email arrives with a red "urgent" flag. When I'm asked if I want to go to the pub quiz. When I'm told someone will be at my site the following day and would I take them to lunch?

    Like you I wonder if it's normal or excessive. But for someone who now realises that they hardly feel anything at all normally to experience the sudden awakening in the solar plexus and the chills in the legs - I think it's significant.

    And I wonder how safe it is to apply techniques like CBT, or generally "get out of my comfort zone & develop my weaknesses" when I know that after a decade of doing that I burned out and suffered horrendously for 18 months.

  • I think what I'm trying to say is, I feel it wasn't the events themselves which caused the anxiety, but the rigidity of my thinking and that what actually happened didnt match with what i thought was going to happen in my mind.

    I've had this before when people have just turned up at the house out of the blue. 

    I'm going to speak with my counsellor about how I can build more flexibility into my thought patterns.

  • I don't know if this contribution fits here but here goes...

    One of the traits for autism is struggling with changes in routine. So whenever I have read about it, I have always just assumed this means daily routine. I've actually never had my morning routine disrupted and thought this trait couldn't apply to me. 

    A while ago i saw on a ch4 documentary that for some people it's not specifically routine but change with expected events. (So I'm not sure if this is to do with rigid thinking or routines,  maybe they overlap). 

    I've had incredible anxiety today. It's an ongoing thing I'm trying to manage. I've been off work with it and been on reduced hours. Today was my first full day back in.

    1. I attended a training event this morning. My brain knew there was nothing to be concerned about. I wouldn't be put in the spot.  It was very informal. But couldn't shake off that anxiety.

    2. Training finished earlier than expected so I returned to my usual job earlier than expected. I managed well. My brain knew I'd coped well and nothing bad had happened. Still the anxiety grew. 

    3. I found some paperwork which hadn't been completed by my cover when I was off a few weeks ago which meant I now had to do it. I thought it wouldve been done tbh and was a bit cheesed off that I now had to put the time in to catch up. (Given id been off with anxiety some of it due to workload). My brain was saying "it's no problem these things happen" but the anxiety got worse.

    On my drive home I really tried to get to the root of why this had all made me anxious. The humsn brain me knew the rational explanations but the animal me just felt anxious. I felt more at ease when I identified "I think it's because I'd experienced 3 unexpected events in quick succession".

    Does this all relate to routine or am i barking up the wrong tree?  It's quite clear these unexpected events have caused me problems. Is my response excessive or normal? 

  • Yes I understand that completely - what I can't get to the bottom of is how on earth do you decide what's a quirk and what's Restricted and Repetitive / Insistence on sameness. I've read that one "thing" is a quirk, several are a RRB/IS. I have several. But I seem to not pass the threshold because I didn't line toys up as a child.

    Also what's a significant impairment? We're all different in how we process stress. One person with ASD might have a meltdown if the shop runs out of their favourite crisps, another might just put another straw onto the back of the camel.

    I feel that I ought to be able to say "ah well, I'm sure the experts assessing me know the answer here" and trust the outcome - but I've struggled for 25 years and they've seen me for 3 hours so far.

  • Yep me too. ASD explains my life so completely and I'm having a hard time believing that I could be "simply" a socially awkward / impaired NT. My assessment seemed to start off with the assumption that I'm NT and then set out to prove it.

  • I think it is very difficult to know what "counts".

    For example, I was explaining on another thread, I've seen many dietitians and actually most people have the same breakfast and the same lunch each day. It's actually not considered problematic unless not getting to have your particular breakfast or lunch every day exactly the same causes quite a significant impairment in your ability to function.

    This is obviously just one example but I think it is often based on the response and ability to cope. I could be wrong but I remember having it explained once that it's okay and perfectly "normal" to have quite a repetitive life with "unusual" behaviours or quirks. It is considered "disordered" or "significant" based on the level of distress caused by change or not being able to engage in these behaviours. 

  • If your answer to all of the above was yes, then you do, in my opinion show RRBs. Whoever is doing the assessment should take into the account that RRBs will be subtler in some people than others, but that's not to say that they're not there. We all adapt coping mechanisms, because we have to, that doesn't mean that we're not autistic!

  • I do the same thing with work clothes. 3 pairs of the exact same pair of black trousers, and various shirts (dark green, dark blue or dark grey) and so everything matches, no thought required on what to wear :) I always rotate them in the same way too. And they are organised in the wardrobe by sleeve length. 

  • That approach misses the point that you might develop a routine in order to make life easier...

    "Having different coloured shirts plus some trousers with stripes and some not means I have to try to work out what shirt 'goes' with which trousers & then which tie matches... oh and some shirts need cufflinks or it's hot but I don't have a short-sleeved shirt... aaaarrrgghhh!!!"

    Solution: Replace all shirts with white, short-sleeved ones and all trousers with charcoal-grey ones, all shirts, ties and trousers are now interchangeable - relax

    That now leads to 'Deviation from the established routine causes disproportionate stress (in the eyes of an NT observer)...'

    One leads to the other

  • Thank you. My assessment seemed to draw a distinction between "rigid adherence to a routine because of extreme stress if it's changed" and "adopting a routine to make life easier". I believe they've put me in the second bracket. I think they might be wrong.

  • Thank you - I will try to remember to come back here and read those!

  • Thank you. Yes to all of these questions. Starting to be annoyed at the way this was dismissed in my assessment now - the fact that I could force myself to cope seemed to count as "no trouble adapting".

  • Thank you! So many of these I'm nodding to. I've been struggling with where stuff is kept in our house after my wife swapped things round about 3 months ago. It's taking *soooo* long to adjust!

    Am I right that you don't have a DX yet? You're waiting for an appointment?

    • YEP: I have the same morning routine (exactly the same). If interrupted by the kids for example, I WILL forget things like my wallet or even my lunch or parts of my routine like spraying aftershave. This puts me in a mood for the day.
    • YEP: I notice the same cars at the same point by the reg numbers on the drive to and from work.
    • YEP: Hate new situations/going to new places outside of my routine. I over-prepare. E.G plan the route using google maps and will literally use the street view feature to do the whole journey, numerous times to familiarise myself.
    • YEP: Hate people turning up to my house unexpected and my usual environment is interrupted. I become mute and withdrawn and can appear very rude.
    • NO/YEP - I just have down time all weekend :-). On weekends where there is a lack of a routine I often get overwhelmed and need a period of down time.
    • YEP. Once tried another because mine was busy - flummoxed & awkward & ended up not staying. I've given up with barbers again & do my own hair. I go to the same hairdressers because a family friend works there and I feel comfortable. Even though I've moved away from my home town and it's quite out the way to do this now.
    • YEP: I listen to the same music and bands I have since I was a young teenager and can listen to the same song on repeat without getting bored.
    • YEP YEP YEP!: If an item in the house is moved I cannot adapt. For example if the plates were moved to a different cupboard in the kitchen I'd always go to the old cupboard.
    • YEP: Breaking routine means I lose things or forget things.
    • I would if that's where I kept it! Keys and Phone though YEP: I tap my side pocket and back pocket periodically to ensure my phone and wallet are still there.
    • YEP: I organise things on my desk at perpendicular and 45 degree angles and will adjust things to the most minute detail.
    • OMG! YEP: I constantly check banking apps even when I know no activity has taken place.
    • No - CBA :-) I constantly check the met office weather app and track rain with the 'last 6 hours' feature. I often do this to predict when the rain will actually hit rather than relying on the forecast!
    • YEP, YEP. I constantly mess and fidget with my hands. I cannot stop twirling my beard.
    • No - but I rub my leg / squeeze my leg / bounce my leg(s) / rub my chest. I rock backwards and forwards, side to side or pace when feeling uneasy.
    • I think so - grunting and snorting for e.g. especially under stress. Physical and vocal tics
    • YEP, YEP, YEP. Wear the same old clothes and have the same type of trainers in different variations (for me it's hi-top converse!)
    • YEP, YEP, YEP!!!! I eat the same thing at lunch at the same time in the same order everyday.
  • I work in an office with a 'casual dress' dress-code but Mon-Fri I wear smart trousers, short-sleeved white shirt and a tie. I give myself 'casual Friday'.

    Shirts get worn twice, in my wardrobe clean shirts are on the right facing left and worn shirts on the left facing right - my wife no longer puts my clothes in the wardrobe as she always 'puts them in the wrong place'

    I have around 15 ties of different colours, they are kept on a tie-rack and worn in strict rotation, they are also arranged by hue from dark to light

    If I can, I match my pants socks tie and watch (I have around 30 watches) e.g. purple tie + purple pants + socks with purple stripe + all black watch (I don't have one with purple on it... yet)

    I don't HAVE to match the colours but I feel better when I do

    Bank Holiday weeks mess up my system as I either have to wear casual clothes twice or a shirt only once (carrying a worn shirt over to the next week would just perpetuate the problem)

    One day I found I had no shirt on a shirt day, I seriously considered washing, drying and ironing a shirt (which would have made me about 90 mins late for work) but in the end went casual instead as the 'lesser of 2 evils'

    This is just one thing, my point is that I just thought it was a sensible approach to streamlining my mornings and looking professional until I had to explain it to someone else and realised that deviation from it caused me anxiety - not meltdown-inducing but just ratcheted the levels up a couple of notches...

  • There's some good references at the bottom of this article:

    https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4939123/

    and this is interesting, reading it might make you think about your own behaviours in terms of RRBs:

    https://orca.cf.ac.uk/11580/1/leekam.pdf

    This is good:

    https://molecularautism.biomedcentral.com/articles/10.1186/s13229-018-0242-4

    This, which you posted a while ago is, I get the impression, the gold standard measurement of RRBs in adults, so I would definitely use your results for this and take them to your next appointment:

    https://research.ncl.ac.uk/cargo-ne/Repetitive%20Behaviour%20Questionnaire%20(RBQ-2)scoring%20final1.pdf

  • Is your style of thinking obsessional, ie do you like to think about the same thing or person over and over and over etc?

    Do you do the same thing repetitively such as play the same track on a CD on repeat way to many times?

    Do you need to do things in the same way repeatedly? Would you struggle to change the way that you do certain tasks?

    Hope this helps? I'll go have a look on the internet to see if I can find any useful RRB checklists....

  • After following your story I decided I would keep a document of all my traits ready for when I get my referral back, so far it's 12 pages... I have a section for routines/repetitive behaviours. I'll list some of the things I've put for myself and hope that it helps you see some things in yourself that you previously may not have considered:

    • I have the same morning routine (exactly the same). If interrupted by the kids for example, I WILL forget things like my wallet or even my lunch or parts of my routine like spraying aftershave. This puts me in a mood for the day.
    • I notice the same cars at the same point by the reg numbers on the drive to and from work.
    • Hate new situations/going to new places outside of my routine. I over-prepare. E.G plan the route using google maps and will literally use the street view feature to do the whole journey, numerous times to familiarise myself.
    • Hate people turning up to my house unexpected and my usual environment is interrupted. I become mute and withdrawn and can appear very rude.
    • On weekends where there is a lack of a routine I often get overwhelmed and need a period of down time.
    • I go to the same hairdressers because a family friend works there and I feel comfortable. Even though I've moved away from my home town and it's quite out the way to do this now.
    • I listen to the same music and bands I have since I was a young teenager and can listen to the same song on repeat without getting bored.
    • If an item in the house is moved I cannot adapt. For example if the plates were moved to a different cupboard in the kitchen I'd always go to the old cupboard.
    • Breaking routine means I lose things or forget things.
    • I tap my side pocket and back pocket periodically to ensure my phone and wallet are still there.
    • I organise things on my desk at perpendicular and 45 degree angles and will adjust things to the most minute detail.
    • I constantly check banking apps even when I know no activity has taken place.
    • I constantly check the met office weather app and track rain with the 'last 6 hours' feature. I often do this to predict when the rain will actually hit rather than relying on the forecast!
    • I constantly mess and fidget with my hands. I cannot stop twirling my beard.
    • I rock backwards and forwards, side to side or pace when feeling uneasy.
    • Physical and vocal tics
    • Wear the same old clothes and have the same type of trainers in different variations (for me it's hi-top converse!)
    • I eat the same thing at lunch at the same time in the same order everyday.

    It's not always the behaviour but consider when your usual situations are interrupted and the effect it has on you. Like when people turn up uninvited. That's clearly not a repetitive behaviour for yourself but your usual, comfortable routine at home is interrupted and there is a mental consequence.

    Hope that helps Slight smile