Anyone been diagnosed who doesn't have a 'rigid routine' ?

Hi, I have my assessment in about a month, and I'm worried as most descriptions of ASD include having a rigid routine. I don't and never really have had a particular routine. I'm not working at the moment, which means I don't have to have a routine, and I pretty much eat, sleep, go out, do chores etc whenever I feel like it. I can be very organised in some respects, and very chaotic in others. In an ideal world I would like to have more routine in my life (nothing too rigid though), in order to get things done, but never seem to be able to make this happen.

I don't like it when someone/something interrupts my plans, or when sudden changes are thrust upon me, but I'm not sure if that's the same thing.

Has anyone else been diagnosed with ASD who hasn't got a strict routine?

  • Yes, thanks GiGiLish that is helpful. As far as things being internalised goes, I think this is part of the problem in getting diagnosed. If for e.g. I was told tomorrow that my Monday appointment had been cancelled, or I turned up and was told then, I would be devastatingly disappointed and frustrated inside, angry, weekend spoiled, wondering if I was safe to drive home: but what you'd see on the outside is me saying "Really? Oh, that's disappointing - when can I expect it to be delayed to and will I receive another letter?".

  • If you look at my little graphic on that page and find 32 on the X axis, you'll see that we are both in the company of about 1/3 of the people with ASD and about 1/10 of those without ASD (going by eye - I haven't done the maths (yet!)). Which means that we are more like ASD people than we are like non-ASD people (I think, if I'm interpreting the meaning of the maths correctly).

    Some of the things I experience are here: https://community.autism.org.uk/f/adults-on-the-autistic-spectrum/15708/everything-i-know-about-me-that-s-relevant

    I'm going to print that off and take it with me on Monday.

  • I don't like it when someone/something interrupts my plans, or when sudden changes are thrust upon me

    That's a 'marker'... also, routines can be subtle e.g. for me:

    • I wear the same clothes (shirt, short-sleeved shirt, tie) Mon-Thu with each shirt being worn twice, and 'casual' on Friday even though my workplace has a 'casual dress' policy. Anything that interrupts this cycle e.g. a Bank Holiday resulting in an odd number of 'shirt days' is stressful
    • In my wardrobe clean clothes must go in on the right side, facing left while 'worn' on the left facing right
    • There is a particular way the dishwasher must be packed
    • I always go round the supermarket the same way - going 'down' an 'up' aisle feels weird so I'll go along an aisle even if I don't need anything in it that time just so I don't end up going the wrong way

    There a fine line between 'this is what I usually/prefer to do' and 'if I can't follow my usual approach it makes me anxious' - the former is 'habit' the latter is a likely 'autistic trait'

  • Thanks, that is reassuring. I agree with the  idea of routines being internalised, more like expectations of what should be happening, rather than physical actions. For example, I can plan to meet up with a friend, but if I unexpectedly bump into a friend when I'm out, that can throw me, even if my 'plan' for the day is just a bit of casual shopping on my own (providing I'm in the right frame of mind to handle noise/lights/crowds etc).

    It's good that his reports picked up on that too - I sometimes worry that the assessments themselves are too 'rigid/restrictive' in their questions!

    Thanks for the reply.

  • Re: restricted & repetitive behaviours/insistence on sameness - I find these questions really hard to answer, as they are way too generalised, and I don't feel I fit into any of the answer categories exactly. For example, how do I define what a restricted range of behaviours is? And how do I know what a 'normal' range of behaviours is?

    I do re-read good books, (but I read new books most of the time) and it's a standing joke between me and my friend that I usually want to watch films I've seen before, but that's because I find a lot of films boring/badly acted/derivative - I do give new films a chance but often I lose interest.

    I live on my own, but don't like it if anything is moved, but don't eat the same things every day. I have repetitive tics/stims, and often find myself repeating things, sometimes because I think the other person isn't listening properly, but sometimes I don't know why I do it.

    I also scored 32/1.6 on the test, I'm not sure what that means though, as I was confused with all the jargon/abbreviations, is that nearer ASD or NT?

    Good luck with your ADOS on Monday.

  • Hi there,

    My ten year old son has just been diagnosed with ASD and like you doesn’t have rigid routines as such. If plans are interrupted or changed that’s an issue for him. But in terms of ritualistic routines he doesn’t have so many. It’s more like his ‘routines’ are internal and around his expectations of what should be happening as opposed to physical actions. Parts of his life are super organised whereas others are a chaotic whirlwind!

    His reports picked up on this also.

    Hope this helps! :)

  • This is a question that interests me, as I have been assessed and meet all of the criteria except for Restricted and Repetitive Behaviours / Insistence on Sameness. It seemed to me that the focus was very much on "did you line up toys as a child?" and "do you have a meltdown if someone rearranges the furniture?". No to both, but I do categorise data and look for taxonomies everywhere, and prefer the same lunch every day, and after my wife reorganised the cupboards in our house I am now seemingly permanently confused about where stuff lives, and a whole host of other things like perseveration & obsessive thoughts.

    Have a look at the thread I started here, which talks about the different ways that these classic symptoms present in adults :https://community.autism.org.uk/f/adults-on-the-autistic-spectrum/15724/the-rbq2a---standardised-self-report-for-restricted-and-repetitive-behaviours-in-adults

    I'm hoping that my ADOS on Monday will provide the opportunity to capture the missing evidence.