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?
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.
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! :)
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.
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.
Poppy71 said: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:
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'
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.
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?".
Yes, I can relate to Poppy71's statement too. One of my equivalents to the supermarket sweep is that if I want to go to a shop after work I have a very strong need to go home first, even if the shop is on the way home or nearer to work than home; like I need to complete my commute before I can say "Yep, that's work over, here's leisure time, let's go to the shop & get that thing I wanted.". I *can* go on the way home, but it takes determination and mental effort. Likewise when I first met my second wife, I used to have to go to *my* rented place "to check my emails" before going to hers. What I know now is that I was going to mine to become grounded and "home" before venturing out again & avoid the plain weirdness of going straight to hers.
I used to hate things at school that interrupted the routine - even "good" things like "bring your toys in day" or sports day. I would sigh inwardly when lunchtime came, because then I'd be bored.
Ok thanks, that's a good idea to print the results and take them with you, i think I'll do the same.
I’m the same about stopping somewhere after work! It’s like an urge to have to go home first. I sometimes pick my dog up from my mums house if she’s been there while I’m at work, and if my mum offers me a cup of tea I get angry, because no! I don’t want a cup of tea! I need to get home!