At the Intersection of Autism and OCD

This morning I got my triathlon race number: 336. My first thought was, “yes, okay, good” because 336 is a pleasing number. If I’d gotten 337, I would have had the opposite reaction. 337 is not a pleasing number at all. I don’t even like typing it.

What’s good about 336?

3 + 3 = 6

6 / 2 = 3

3 + 3 + 6 = 12 which is divisible by 3 and 6, also; the digits in 12 added together = 3

337, on the other hand, is a prime number. Some people love prime numbers, I know. I’m not one of them. I find primes frustrating rather than interesting because I can’t do anything with them.

The strength of my reaction to seeing 336 printed beside my name surprised me a bit. I’m still getting used to this latest eruption of OCD traits and how relieving or unpleasant they can make otherwise meaningless everyday occurrences feel.Β 

cityBikeRiders

My reaction also got me thinking about where my autistic traits overlap with my OCD traits. There is some stuff that’s clearly OCD. Intrusive thoughts, for example, I put in the 100% OCD column. They’re unpleasant, unwanted and hard to extinguish when they arise.

The number thing is similar. I not only find 337 unpleasant, I would be pretty uncomfortable if I had to show up at the race Saturday morning and have it written on my arms and legs.

The repetitive movements of stimming, on the other hand, are 100% autism. They don’t feel compulsive at all. Instead they feel instinctive and natural. I have no desire to be rid of them. The same is true of my echolalia.

There’s a grey area though, a set of things that fall into that unclear space of might-be-OCD-might-be-autism. Things that lie in the grey area for me mostly relate to orderliness. Not wanting to have crossed-out words on a handwritten page. Not wanting–and I mean really, really not wanting–The Scientist to fold a prescription I’ve handed him to hold while I get my blood drawn. Needing to have a stack of books lined up by size and spending way too much time deciding if the stack should be perfectly centered or lined up on one or two edges.

I can see how the stuff in the grey area could be an autistic need for order and I can see how it could be an OCD compulsion. Objectively, there is a lot of overlap between the traits of autism and OCD: repetitive thoughts, speech and action; sorting and ordering behaviors; obsessive interests and collecting; high levels of anxiety. There is even a higher rate of sleep difficulties and executive function impairments in people with OCD, which parallels the experience of many autistic people.

Perhaps one way to differentiate is by how the thing makes me feel. OCD traits are characterized as anxiety-inducing and unwanted. Feeling like I need to rewrite an entire page because I crossed out one word? Definitely anxiety-inducing. Especially because I recognize the irrationality of the act and resist doing it, which only makes the anxious feeling worse. Having to repeat multiple times that the prescription shouldn’t under any circumstances be folded or creased in any way? Yep, that makes me anxious too.

But lining up those books? That’s actually an enjoyable process. The outcome is pleasing, the process soothing.

*

My OCD traits are relatively mild and sporadic. The intrusive thoughts are something that I’ve lived with for a long time. I’ve learned to see them for what they are and I’ve become pretty good at patiently and nonjudgmentally being with them until they pass. They’re unwanted but manageable.

The compulsions, though, are something I’ve noticed happening with increasing frequency over the past few months. There have been a few periods in my life where I’ve experienced slightly different types of compulsions. They seem to arise and then disappear on their own schedule, usually persisting for a few months at most. Compared to what a lot of people with OCD experience, they’re a mild annoyance.

But this latest flare-up has me thinking about how OCD and autism intersect. Are autistic people more prone to a certain type of OCD presentation or perhaps to having unwanted obsessions and compulsions in general? Does autistic anxiety feed the intensity of OCD traits? What about a temporary loss of coping skills? How does having or not having a current special interest impact obsessions and compulsions? How does impaired executive function (especially impaired inhibition) affect OCD traits?

I don’t have answers to these questions, beyond my gut instinct that there is a significant area of intersection and that it might go both ways–creating either a vicious or virtuous cycle. We are, after all, a delicate balance of many interlocking parts. Changing one thing inevitably changes everything else, so it makes sense that a shift in the balance of my autistic traits would impact the balance of my OCD traits.

106 thoughts on “At the Intersection of Autism and OCD”

  1. A most interesting post. I found it slightly uncanny that two of your examples (crossing out a word on a page and folding a piece of paper) are both things that trigger a disproportionate response in me, while I also have a strong tendency to align items.

    I am aware that I show some signs of OCD: I often exhibit compulsive behaviors such as needing to let a music track or video play to the end rather than stopping it prematurely. However I very rarely experience intrusive thoughts which is why I do not believe that I have OCD. Instead I think that my compulsions derive from my need for order and routine — an autistic trait.

    1. Yes you said it exactly! I don’t have to think of a reply of my own now. What Alex said goes for me to complete with examples of music tracks and videos. Thank you Alex!

    2. Yeah, I could attribute the compulsions to an autistic trait (and they may well be one, as you say related to order and routine) but the intrusive thoughts are very definitely OCD-related. They’re so unpleasant that I literally couldn’t think of an example to share that wouldn’t freak people out who don’t have them and trigger those who do.

      I’ve also noticed that my compulsions will disappear entirely for long periods and I become almost pure-O but the intrusive thoughts are a steady recurring thing.

  2. I have recently had more OCD issues bothering me and it may be because of having recently – about a month ago – moved. I think that even though I have been wanting to accomplish this for 5 years, it is still a huge juggernaut of change. It seems my mind treats its anxiety with looping thoughts. Going for walks helps, and routines help a lot.
    * Also, going further with the prettiness of 336 and if you don’t mind starting in the middle with the three(which, I don’t because for me it is okay to jump around in numbers), if you add 3 to 6 you get 9 which if you back up and divide by 3 you get back to 3. πŸ™‚ For me this is like ordering the books in different pleasing ways on the shelf.
    Good luck, be safe and have a ton of fun with the triathlon.

    1. It makes sense that a huge change would exacerbate your OCD issues, I think. I feel like my recent uptick might be related to both the stress of the language problems I’m having and losing access to one of my long-time special interests.

      Thank you for adding to my examples of why 336 is so beautiful. I’m going to be thinking of these things when I’m nearing the end of the run on Saturday and desperate for distraction from my misery. πŸ™‚ And thank you for the good wishes. I feel really well prepared physically and my biggest concern right now is that the forecast says “chance of storm” and “98% humidity”. Well, that and the possibility not being able to find my bike among 900 other bikes after the swim. Yay autistic brain! πŸ™‚

      1. Oh god, having to find your bike amongst all those?! That would stress me big style (I’m feeling uncomfortable thinking about it on your behalf!). It’s like a combination of being in the middle of a crowd of busy people and forgetting where you’ve left your car in a big car park (and then when its not where you thought you’d left it there’s that feeling of panic) Not that I lose my car a lot obviously (yeah right)….

        1. My bike position worked out great! My assigned rack was at the end of the row directly in front of the exit chute from the swim. I only had to walk like 10 yards straight into the transition area to find it. It was awesome. Remembering how to hang it back up on the rack after riding it was a little more challenging. πŸ™‚

          1. Fab! I’m guessing that you’ve successfully completed it – either that or you’ve stopped mid-way to blog which is gratifying for us but perhaps a little bit of procrastination on your part πŸ™‚ Well done you, that’s a great achievement!!

            1. I did and it was a success! My main goal was to finish and my wish was to finish in around 80 minutes and I did both so I was thrilled. I’m writing a post about what I learned during the 8 weeks of training, etc.

              1. That’s brilliant – I’d never manage anything like that (being unfit, hopeless at swimming, scared of being out of my depth (in so many ways) – but i can ride a bike!). But reading about someone else achieving their goal does inspire me to think about achieving stuff myself so I’ll look forward to your post in due course.

                1. Ah but with a bike you can put your feet down, you can’t do that as easily (if at all) with swimming. And I’ve watched too many shark films…..!

  3. I found it so helpful to read this post as I am constantly trying to unpick and decipher my confusion between my sons Asperger traits and his adolescent boy traits (he is 13). Too often these get lumped together but the responses to his emotions and behaviours need to be differentiated.

  4. First off welcome back!!!! You don’t know how happy I am that you are back…the world feels better already:) Yay for your running number too:)

    I found this post uncanny because just yesterday I was in my therapists office very distressed with some obsessive anxiety inducing thoughts…I have been in therapy for nINE years and we have never had to go over OCD…but we have had many other things…but he ends up saying, “You need to come in for an hour this month and learn some skills for OCD anxiety and obsessive thought with anxiety.” To be honest, it was such a relief to hear that because I am overwhelmed with apocalyptic type dialogues in my head lately and I know it is because of tons of stress, health issues and such that is causing my anxiety obsessive dialogue to go through the roof. I do think there is a fine line and I think you explained it well. I don’t think I would ever be diagnosed with OCD but I do think that with Aspergers and with my anxiety that I DO have OCD anxiety ( which I found out can be a specific diagnosis on it’s own because my daughter has that diagnosis even though she is not OCD in any other area of her life….) at differing times of my life…but the times I am organized (which is rare) are times I enjoy.
    Also my executive functioning has gone WAY down during this time…to the point of dangerous in a few moments…and I do not think it is a coincidence! I am glad you mentioned that too!
    This was a very serendipitous post! Thank you for writing it!

    1. Yay! It’s a tentative return, but I guess I’m back.

      I hope you’ll write about what you learn in that OCD/anxiety skills session. I’d love to know more about the skills you pick up. Mostly my coping skills are self-taught, but they work for me. (Be sure to let me know if you write something so I can link to it from this post too.)

      It feels like there has to be a link between the inhibition aspect of EF and the sudden or strong emergence of OCD traits. Cognitive function is one big bucket so it’s not like we get a special reserve of inhibition just for keeping the OCD stuff to a bearable level. If we’re using up more EF in other areas of our life, then having less to cope with our baseline issues (which is how I think of my OCD stuff) would be a pretty logical result.

  5. Yeah, I’m not a fan of prime numbers. I can usually handle them under 10 but not above. So 1, 3, 5, and 7 are okay but not 11. So weird. I do like the Fibonacci sequence and fractals. Those are just fun and make me feel a bit obsessed.

    I love sorting my books by height. I have a tendancy to set things horizontal on top of vertical books. If they’re lined up by height there is often a fairly flat space. If the books are ramdom by height some of the taller books end up getting dog eared and frayed or worse, bent. My books must be nicely preserved. I don’t like broken spines or binding that has come undone. I left a book in the car and the glue just let go of the paper. Now I have pages that half hang out of the book. It’s painful for me to touch. I’d rather just toss the book and get a new copy.

    I hate crossing off anything on a handwritten page. I end up scribbling over it to try and blot out whatever I wrote but I still end up reading whatever mistake I made. It ends up driving me so crazy I will often just rewrite it perfectly.

    I don’t mind my quirks really. There is a reason why I don’t like things with valid reasons. If anyone comments I will often use my personal reasoning, like books getting bent.

    1. Broken spines on books make my skin crawl! When I have a new book I always read it carefully so that I can keep the spine pristine. Seeing someone literally crack up open a book and crease the spine is . . . gah. So yeah, totally get where you’re coming from here. πŸ™‚

      I’ve noticed that when I’m a pretty regular period of life, I can cross stuff out and not care. But when I’m in a period like this recent one, I’ll have to remove the piece of paper from my sight so I can (eventually, hopefully) forget about it or I’ll end up having to copy it over. It’s a bit Jekyl and Hyde, I guess.

      1. I hate it when I (foolishly) lend someone a book (rarely these days) and they don’t return it in the same pristine condition that they received it in. One friend has been known to commit the cardinal sin of writing in it! She wrote my name in the cover so she wouldn’t forget who she’d borrowed it from – noooooooooooooooooooooooooooooooooo! Stick a bookmark in it but don’t write in it. And someone else took my book on holiday but dropped it in the pool or something – it’s trashed and falling apart now. And it’s a book I love. I’ll buy the occasional second-hand book but only if I can’t get it new or if it’s ridiculously expensive new. But it never feels right.
        (I’m going to go and gaze at my pristine bookshelves now!!)

        1. Oh, I am absolutely perfectionist about the way others read my books.
          Both my mother and my sister have a smoking ban when reading my books – by now I have just stopped lending books to them, because they really can’t seem to GRASP THAT CONCEPT that I don’t want my books to stink like a tobacco house.

      2. I lend out my books a lot…part of the reason I buy books…my pet peeve is never getting them back with the investment I put in…I think its rude, but I am fine with a year later…and the spines are hard for me too. I don’t mind highlighting or doggy ears but I like to see pretty pristine spines too…I am working on letting it go:)

  6. I haven’t really looked into OCD much, but when you describe it in this way, I think some of the things I do definitely fall into this category, if like you said it’s about how anxiety producing and unpleasant they are, and you don’t really want to do them but you do them anyway. For example, I will find myself going back again to check if the doors are locked even though I already did this (always), or not being able to leave something a certain way even though I’d kind of like to just move on. I definitely have intrusive, unpleasant thought cycles that won’t go away when I want them to.
    On the other hand, most of the things that OTHER people comment casually are “OCD” in me are things that I find perfectly reasonable, like when I put my dishes or food away, I always put the same things in the same places. When I have someone staying at my house and they try to “help” by putting dishes or groceries away and they put them in weird places, I have to go back and reorganize them. But to me, this is perfectly reasonable, because I have a really hard time finding anything if it’s not in its proper place, and the place is usually logical. Me putting them in those places is not problematic (to me) at all, its just the way that makes perfect sense. Same thing if I want to prepare my food a certain way, and I don’t like it when it is prepared a different way even though according to others “its the same,” we know it’s not the same.
    So I don’t think the traits that people usually complain about as being like OCD in me are really OCD. Also, those things bother me equally whether I’m stressed or not, although I’m probably more likely to complain about them when I’m stressed because it just seems like “one more thing.” The unpleasant traits like the intrusive thoughts or checking things over and over are definitely worse when stressed though.

    1. Oh, I think you’ve hit on another great differentiation – the idea of useful things vs. unwanted things. I know exactly what you mean about needing to have things put away “in their place” or risking not being able to find them when I need them.

      I suspect a rate of “useful but habitual things” that appear to be OCD in nature might be why some autistic people get misdiagnosed as OCD before getting an a proper autism diagnosis. I have a bunch of those too but didn’t even consider including them in my analysis. Oops. πŸ™‚

      1. This is fascinating! So does this mean that not everyone has a place for stuff to go back to? It drives me crazy when my teens putting the washing up awY as I can never find anything, which makes doing something simple turn into an anxiety inducing process that takes 3 times as long! Also, the cutlery has to go knives, forks, spoons. Why ever would it be forks, spoons, knives?! Sometimes i think they do it deliberately just to drive me crazy!

        1. I guess not? Some people seem to care more about this stuff than others, I’ve noticed. πŸ™‚

          Also, I’ve been eating paleo since July 1st (did a Whole 30 in July) and loving it. I couldn’t resist sharing that after seeing your username.

          1. Ach my typing is atrocious on the ipad – well done for making sense of that lol. I just can’t see why people would put things back in random places, aspie or not surely it just makes everything take longer? Sigh. I thnk I’ve pretty much given up on trying to understand the logic, or lack of, in others.

            Yay for another paleo eater and well done on the Whole 30, ive only managed 29 days so far (i know, some kind of weird self sabotage) and i’ve been paleo for over 3 years now so that’s really impressive IMO.

            1. I think my aspie brain helped me out with the Whole 30 – I’m a super fanatical rule follower when I get it into my head that there are RULES TO BE FOLLOWED. πŸ™‚ Plus my husband did it with me so we had moral support during moments of temptation.

          2. I have been on paleo ish diet for 6 months now…our whole family has done it and we feel LOADS better…we do still use cream, butter and greek yugort and honey but otherwise are strictly paleo. We love it too…I thought it would be so hard and after the adjustment it was actually EASIER than our north american diet…less choices, better eating! Yay:)

        2. It seems so illogical not to have a place for everything constantly. I mean, why would anyone want to have to hunt around for stuff when they could know exactly where it was?
          I’ve never found a cutlery tray for my kitchen drawers that does exactly what I want – the one I have isn’t bad but the sections are too wide and the cutlery spreads out (which looks messy). And the pastry forks (which sadly get used on getting cat & dog food out of the tins rather than eating pastry ever so daintily) end up slipping down the other end of their section. It pains me each time I go to put clean cutlery away.

          1. So there are at least three of us on the comments alone (see Pru Creatively Paleo, September 5) who worry about placement of cutlery. I subdivided the whole drawer into eight sections that at least my brain found entirely logical. Since I do the dishes, moreover, nobody messes up the system. Very satisfying. Recommend.

            1. This has inspired me to look up cutlery organisers on Amazon and I’ve found one that expands AND that has stuff in the bottom so that the cutlery doesn’t move around! I need to get measuring πŸ™‚
              And that’s got me thinking about my pan drawer which annoys me – I figure if I get a lid organiser I can then stack the pans up and save space. Although I’ve seen pans where you can take the handles off and thus fit them inside each other!! Cool or what? I’ll have to see how much they cost and work out if I can justify the cost to myself πŸ™‚ I’m kind of big on saving space and making everything look tidy. If items have more space in a cupboard it’s easier to get them looking just right.
              Happy days πŸ™‚

              1. Link? My cutlery organizer has been driving me bonkers since we got a second set of 4 knives.The spoons section is too short and now the knives are overflowing. Is 8 knives really too many? Plus, we have chopsticks, which don’t ever seem to get accounted for in the typical cutlery organizer. :-/

                1. http://www.lakeland.co.uk/21010/Expanding-Cutlery-Tray
                  This is the lakeland site – expensive postage outside UK!
                  http://www.amazon.co.uk/gp/product/B00A7Q77GM/ref=gno_cart_title_0?ie=UTF8&psc=1&smid=ALHONXD9AB54S
                  This is the Amazon (UK site) link – I couldn’t find it on the .com site.
                  Your comment about knives has got me wondering if there’s really any point me having all the knives I have since I never get them out of their protective coverings. They just sit in the drawer taking up valuable space.

        3. Odd that I also naturally arrange in Knife, Fork, Spoon order in my cutlery drawer. Oh and toilet paper orientation, that’s important. Drives me mad that my current dwelling has so few places to put things. It gives me such a strong urge to go out and buy storage solutions. Of course, that’ll be expensive because the solutions have to all be the same brand so they’re stackable, compatible, uniform (oh the hell of 5 different kinds of tupperware…)

          1. Do people actually put cutlery in a different order to that? I’ve always sort of assumed that this was one of those things that was ingrained and came naturally to the entire population ( πŸ™‚ ) but I guess that logically some people go with different orders or (shudders at the thought) just fling it all in one place together. That’s just weird.
            Totally agree that all storage containers must match. And I have a real thing about objects being in a logical place i.e. in the room which is appropriate to them and not just shoved in a cupboard in a different room just because that’s the only place that they fit. I’d rather get rid of something than have it in the wrong place.

            1. Oh, wow, so I’m not the only one?

              I struggle with where to put my puzzles, for example, because I use them for relaxation, and sometimes that is in my spot (an armchair in the office), and sometimes that is in the living room on the table, especially when I do them with each other. Or the yarn, for example – where does it make sense? I crochet in both rooms depending on what I feel like, and I keep waffling about which is the “homebase”.

            2. I’ve known people without drawer organisers (shudder at the thought). Whoever designed my flat was one of those people who doesn’t understand the need for storage in each room to store appropriate items. Also, divided bathroom/toilet… the horror!

              1. Some people just don’t understand the idea of proper organisation! My mum moved house this year and she lacks decent storage in her new place – she’s ended up with her ‘proper’ dinner service (i.e. the one that never gets used!) in a cupboard in the hall!! That traumatises me, though as it was previously in a box in my spare wardrobe for safekeeping during the move I’m prepared to cope πŸ™‚

  7. Every time I read your posts I learn more about my hubby. Sometimes during tax season he asks me to print an envelope for a client. Sometimes I unknowingly put the envelope upside down, and he brings another one for me to do it over for him. If I am not available, he will hand write (in his uncertain handwriting) the envelope. You’ve unlocked another door for me.

    1. Oh gosh, yes, upside envelopes bug me too. My rationale is that it will look unprofessional to the receiver but secretly I’m sure it’s just because it’s “not supposed to be” printed that way. πŸ™‚

  8. One thing that I’m trying to get a handle on is what the relationship between Aspergers’ and OCD actually is. I understand that intrusive thoughts are categorized as OCD, and stimming is categorized as an autistic habit. But, as an autistic/OCD person who has both intrusive thoughts and the need to stim, I have a hard time separating out which is which, other than looking up a hash table on Wikipedia or similar.

    I’m also curious if there is a non-trivial number of cases where autism and OCD *don’t* go together. Every autistic friend I’ve had has been OCD also (at least to some extent…I’ve never asked about intrusive thoughts, but other OCD behavior is definitely there. In fact, a lot of my autistic friends pick up the label of being OCD before they pick up the label of autistic.

    Still thinking, I guess… πŸ™‚

    1. For me, the stimming is something that makes me actively feel better – either because it’s a happy stim, or a ‘sitting here bouncing my legs just because I feel the urge and stopping would feel wrong’ stim, or a comforting when I’m stressed stim. OCD is a repetitive activity (obsessive thoughts aside) that I need to do but doing it doesn’t actually make me feel better, its just that not doing it would be much worse.
      On the stimming – I was at the dental hygienist on Wednesday and finding it hard work (all my teeth seemed sensitive and I was struggling) and for the first time ever I really needed to stim at a time when I couldn’t. I always stim in the waiting room but have managed without during treatment (because waving my arms or legs around when someone is putting metal tools in my mouth doesn’t seem like a great idea!) but this time was different. I’ve obviously always been in a position before when I’ve been able to stim if I’ve really needed to so it was very strange feeling having that need and not being able to do anything about it. Needless to say there was a lot of stimming on the way home. It’s not particularly relevant I know, and I’ve not expressed my well at all, but I needed to share it!

      1. Oh my goodness, I know that feeling very well. I solve that problem at the dentist specifically by asking for nitrous. They charge me for it, but it’s worth it so I don’t have to constantly think about not stimming.

      2. Everything is relevant! πŸ™‚ I have some pressure stims that I can use in this kind of situation to relieve the uncomfortable feeling of needing to stim but not being able to move around freely. Maybe you could explore a substitute stim for the dentist?

        1. I think I need to, yes. It seems strange though having to think up a stim – all my others are just things that I’ve done without any conscious thought. Maybe I should get a small stress ball to squeeze or something similar to fiddle with (thinking out loud to self)…

    2. Do you find that the things that are generally classed as autistic, like stimming, feel different to you than the things generally classed as OCD (intrusive thoughts, compulsive actions if you experience them)?

      1. I would say that they feel different, but I’m not sure that I would be able to map my feelings connected to each one against the classifications.

        If I read you correctly, you’ve basically said that things that are generally associated with autism are often very calming or useful to you, while things that are generally associated with OCD are the opposite. That’s an oversimplification, to be sure, but feels like the general thrust.

        For me, I’m not sure I can make that mapping. Stimming is usually comforting for me, or a way of silently communicating, and I find it at best useful, and at worst harmless. Intrusive thoughts are obviously extremely uncomfortable, and can cause me a great deal of stress and frustration while I wait out the days to weeks (at times) for them to pass. So, that much of the mapping works.

        But then it starts to get less clear for me. I write code for a living, and am very twitchy about line lengths, which I think would be an OCD trait, but I find it comforting. Similarly, I share your affinity for playing with numbers, but oddly I can only get *excited* about it; I’m able to discharge a frustrating number without too much trouble.

        And some things that I classify in the autism bucket can make me feel very frustrated. I can’t stand soft white light, for instance; that’s a trigger for me. My wife is in the military and we move frequently, and every time we move to a new house, within 24 hours we replace every light bulb in the house. I have a decent number of sensory triggers, but that’s an example of one. Sensory triggers are classic, 100% autism, but pretty unpleasant and unhelpful.

        P. S. Do people seriously cross out words in handwritten papers? That sounds bonkers to me. I’d rewrite every time.

        1. Yes, I think when I split things into autism stuff is good, OCD is bad, I was grossly oversimplifying. There are some autistic things that I find unpleasant or difficult to live with, for sure. Sensory stuff, sleep problems, speech difficulties, social stuff. Actually, the list is quite long now when I start ticking it off. But I guess I see those things as part of a balanced package (there are lots of things about being autistic that I like or don’t mind) whereas the OCD is just all unwanted and if I could magically be rid of it, I would.

          Hmmmm, this is proving harder to put into words than I thought! But I think our experiences are quite similar and you’ve done a better job explaining it that I can at the moment so imagine me nodding vigorously at your comment. πŸ™‚

          1. Yeah, I’m having the same problem with putting my thoughts into words. I’m trying to figure out some way of quantifying or classifying various autistic and OCD traits as, essentially, either “helpful”, “neutral”, or “unhelpful” (in all cases the phrase “on balance” should be added, as many traits have both an upside and a downside to them, as you’ve explored elsewhere). I really want to try to map the way you have but don’t think I am able to, sadly.

            I may have an incomplete construction of what is born out of OCD, but I don’t think I would want to get rid of all of my OCD traits if I could. It’s great for organizing and writing, for instance. My bookshelves look amazing! And I’m often told I’m a fantastic writer, even though I am at best only a mediocre one, and I believe that is simply because my grammar is almost always perfect (which is largely born out of OCD). But intrusive thoughts? That would be on the “where do I sign up?” list. I find them so problematic that I would probably magically get rid of them even if I had to sweep away several other good-on-balance traits along with them.

            The root of my struggle, though, is trying to figure out how distinguishable these really are. If most autistic people, like you and me, also show OCD traits, is it really that we all have OCD *also*, or is it just that the Venn diagram of autistic traits and OCD traits has a non-trivial overlap? There might be limited value to that question, though.

            1. This is a fascinating thread because it make so very clear to me what my husband was trying to say when he was explaining to me why his OCD quirks are different from my stims. I was formally diagnosed ASD this summer and while I have some of those quirks that can seem obsessive I don’t experience much that could really truly be explained by OCD vs. what is more easily explained (in me anyway) by ASD (Unless my sometimes extreme catastophizing counts as intrusive thoughts but I think that it is more an overactive imagination that runs to grim when I’m stressed. In other words it’s rarely problematic). Reading more about the feelings behind OCD is very helpful.

              1. For me, catastrophizing is very distinct from intrusive thoughts. Catastrophizing centers around things that are very unlikely to happen but in theory could possibly potentially happen. Intrusive thoughts are things that I would never do/would never happen. Like a really bad day (catastrophizing) versus a horror movie (intrusive thoughts).

  9. I thought rewriting a page after crossing out a word was normal! I used to write lots of letters and I needed lots of paper. My stinginess/ frugalness took over and I decided to accept the errors as being quirky. I hardly ever write hand written letters anymore unfortunately.
    The upside down envelope written the wrong way round. I understand that but I would only ever rewrite an envelope if it were something very important. I don’t send letters like that anymore. So it is not an issue.
    I did send a card yesterday though and it irritated me that the card was ever so slightly over-sized. Why would anyone make an envelope slightly over the regulation size for standard postage rates. The customer then has to pay more money to send it. I paid the extra postage begrudgingly but I thought that was thoughtless of the card/envelope maker. It irritated me.
    Someone mentioned sorting books in order of height and I instantly thought, I don’t do that, but I do. I was eying the bookcase just this morning thinking that certain books should be in another order. As long as they are on the right shelf they don’t have to be in alphabetical order, but in themes.

    1. I think it might be a more common thing when the page is something important, like a letter to someone. I find it most frustrating when it’s for something that is simply notes to myself and no one will ever see it and I’ll probably end up throwing it away anyhow in a week when I’m done with the project. Then it feels obsessive.

  10. Hey, you’re back!
    And yey on your number! It’s great you got one which makes you happy.

    I always chalked up my intrusive thoughts as part of my PTSD, I never thought it might come from OCD … I think you’ve inspired a blog post. I have to write again anyway, but a lot of stuff happened and I had trouble putting it all in words, and Ian has the same problem, so our blog is a bit dead right now.

    I always thought what compulsions I had – getting “itchy” when I have not said good night to certain people, or when someone has left a chat before I could say “bye” back, having trouble leaving the apartement without the keys even if it’s clear Ian will be home to let me in when I get back, stuff like that – were a part of autism and my need for if-then routines. (I don’t have a “stuff has to happen at that time”-routine, but “if-then”-routines are very regular.)
    I actually call it that – “Mein Autismus juckt”, which translates to “my autism is itching”, when some irregularity/spelling mistake/other easy to correct imperfection makes me uncomfortable, and my friends have picked it up, asking if it itches if I get fidgety and keep staring at something that is annoying me or if I repeat something “is wrong”.

    My books are sorted by genre, topic and within by language. I could not complete that because it turns out some of my books are too big for their designated shelves,so I have one or two mix shelves on which there are piles of books instead of lined up ones. That doesn’t bother me too much.
    But god forbid someone puts books of a series in the wrong order.
    Nice example of that problem:
    The library at one of my old schools had a number-based-system for sorting the book. First by category, then by number. The Fantasy section had a series in it in which those numbers where mixed up between part 4 and 5 of the series.
    So while the correct order of the books themselves would still be 1-2-3-4-5-6, the correct order if you went by the library number was “1-2-3-5-4-6” – it drove me insane.
    I spent all my breaks in this library. I would change the order of those books up to ten times in one break, because it itched like hell.

    And … now I lost my train of thought.

    1. “””I actually call it that – β€œMein Autismus juckt”, which translates to β€œmy autism is itching”, when some irregularity/spelling mistake/other easy to correct imperfection makes me uncomfortable, and my friends have picked it up, asking if it itches if I get fidgety and keep staring at something that is annoying me or if I repeat something β€œis wrong”.
      “””

      This might be my favorite phrase ever. Mind if I steal it? πŸ™‚

    2. I love “my autism is itching” – what a delightful and accurate phrase! πŸ™‚

      What you describe is what I experience as an OCD-related feeling. That sense that if I don’t “do the thing” (and the thing is always something irrational and unnecessary) I won’t be able to feel comfortable or put it out of my mind.

      Please let me know if you post about this because I’d love to read your experiences. It’s interesting that you attribute your intrusive thoughts to PTSD. That’s definitely a thing, especially if the recurring thoughts are related to the original trauma in some way, and not something I’d considered including in this post.

      Without being too specific, my intrusive thoughts have to do with things that have never happened to me and would never happen so they feel very specifically OCD in nature. Like my brain says “hey look at this awful thing I’ve thought up” and I have to go “yeah, that’s nice, moving on . . . “

      1. So you’re saying you’d call it a part of autism if it gives you pleasure to do it (because it appeals to your sense of order and “how it should be”), and to OCD if it is basically unnecessary, but you can’t get rid of it until you do it?
        But the sense of relief you get when you indulge in whatever your OCD tells you, isn’t that in a way the same thing? Appealing to your sense of how it should be? So I am having a hard time telling those two concepts apart.
        I feel like I’m missing a point here.

        Would you call the fact that the spelling mistake on the blackboard that your professor just made is costing you all your self-restraint because you just really, really want to correct it because it is WRONG a part of OCD or autism? (Though that is one thing where I would have also originally thought my obsession with it is somewhat obsessive-compulsive of me.) It’s not necessary, I can put it right in my notes. I might even point it out to the people next to me.

        Many people would call the routine that a lot of autistic people tend to follow totally unnecessary as well, though it gives them a sense of security, but how does one differentiate what is obsessive-compulsive and what is simple routine-loving?

        And yes, I find that phrase just as delightful and very useful indeed, because it’s an easy, short way to communicate your problem to someone who is “in the know”

        There is some more stuff like that, most of it a bit more bitter, which are part of the everyday communication among my closest friends. If I for example make a sarcastic remark, they will look at me all “but Svenja, now you have to give your autism back, autistic people can’t do sarcasm!” Which we, to clarify, of course all know is rubbish, some people can and some people can’t. Spectrum and stuff. It’s a way to make fun of both the preconceived notion of many people about autistic people basically being all like Sheldon Cooper, and the doctor who diagnosed me who annoyed me with his “Autistic people can’t do this, autistic people can’t do that” as if autism wasn’t a spectrum, but I think I talked about that on a blog post in length.

        Intrusive thought number 1 with me is usually my brain coming up with witty comebacks for conversations where I feel I failed to make a stand for myself, mentally arguing back and forth with people until I’m ready to cry because I just can’t snap out of it. The thing is, due to the fact that I am usually rather well-spoken, I feel like I have a kind of “duty” to speak up for myself because other people can’t, and tend to forget that sometimes I simply can’t, either.

        Wait, would that count as an intrusive thought? If it does, trauma-related stuff only comes in second.
        I will have to look up the concept again, I looked into it for a moment yesterday night, but not for long because stuff needed doing.

        1. I’m finding this hard to answer because what I attribute to which thing is very much feeling-based, and expressing how I sort those feelings is challenging my hobbled language brain.

          For me, there isn’t a positive sense of relief at giving in to an OCD-type compulsion. It’s more of a sense of resigned disgust that I have to do something so useless and time wasting (like copying over a page that I’m going to use a few times and throw away in a week) just to shut up my brain.

          Whereas my autistic habits and routines serve a purpose for me. Wearing the same few shirts and pants repeatedly guarantees that my clothing will be sensory friendly. Eating the same foods for breakfast saves valuable cognitive resources I would expend on making food choices every morning. Arranging my desk in a very specific ensures that I can quickly find the tools I need for work.

          So maybe it’s more functional/nonfunctional or useful/unwanted rather than positive/negative?

          There’s a pretty good description of OCD symptoms here: http://www.anxietybc.com/resources/ocd.php (scroll down past the “stories” to get to the examples of obsessions and compulsions). Intrusive thoughts are generally related to things like contamination, disease, death, violence (toward self and/or others), sexual taboos and sacrilege. That website gives some good examples of how extremely unpleasant and totally irrational they can be – the key being that people who experience intrusive thoughts would never actually act on them and are horrified at even having them.

          One thing I’ve noticed is that most diagnostic guides will state that a person should spend at least 1 hour a day on their OCD thoughts/actions and I find that really hard to quantify.

          1. That was a good link, cheers. I have 4 of the 5 obsessions (no real fear of contamination) and checking & ordering compulsions. I usually only think of my OCD as a issue with physical security but obviously it’s a lot more than that. Very insightful and something else to cogitate.

        2. I definitely have the urge to correct an error, but haven’t generally classified them with intrusive thoughts. For one thing, they’re too ephemeral. The urge goes away when I leave the situation (e.g. when class gets out, to continue the example of the professor and the blackboard).

          Intrusive thoughts, for me, are usually with me for days, and rarely if ever are connected to any particular situation I am currently in. They are also so incredibly unpleasant that while I can think of 5-6 examples from the past month or so, I’m unwilling to share any of them. I think if I did, it would just scare people. Suffice it to say that they usually involve either nightmarish scenarios happening to me, or involve my doing something that would be…totally out of character (and that’s an understatement).

            1. Out of curiosity, has either the frequency of or longevity of intrusive thoughts changed at all with age? I think that as I have gotten older, frequency has increased but longevity has decreased (which is probably a net win).

              1. I’m tempted to say the frequency has increased for me but it may be that I never noticed when I was younger. Luckily my thoughts are brief & I’ve got better at just telling myself that they’re OCD thoughts and not relevant and that I should move on. It works fine for the violence / really unpleasant ones, less so I guess for the ones that are more related to catastrophising because (I suppose) they could in theory happen. It would be horrible to have them for even hours let alone days – poor you.

                1. It’s not so much that I have them for days without ceasing (which I think is how I came across) as that the same thought will recur. Still, anyone have any tips for intrusive thought dismissal?

              2. Good question. I’m not really sure. It feels more like they come in waves–more frequent for a period of days or weeks, then decreasing to almost nonexistent for a time. The longevity has always been relatively brief, though I do think the intensity has dropped off as I’ve aged and perhaps learned to cope with them better.

                1. That matches my experience. And right now is an “on” period for me, so of course they seem really bad.

  11. I didn’t think I had any number related obsessions, but since I’ve been considering ASD I’ve realised that I have a very strong need to use the same parking space at work or the supermarket and the same gym locker if at all possible. I thought this was just a strategy to not forget where my car or kit was, but recently I realise there is a number element too. Locker 250 or 260 are my preferences, and 251 just isn’t going to do the job. I settled for 222 today which was in a different section but fine! I’m not quite sure what my criteria are – I don’t think primes or divisibiliy come into it – it is more about how it looks. Also your comment on intrusive thoughts sent me scurrying off to look up more about OCD. Huh, so that’s what they are – I learn more about myself with every post you write! Honestly – it’s like someone handed me an instruction manual for my brain after 48 years of muddling through without one.

    Go 336 for the triathlon!

    1. Well, your user name suggests an affinity for patterns . . . sort of. πŸ™‚ I would have a big problem with 251 but the rest of the numbers you suggested are all quite nice.

      Perhaps I should have defined intrusive thoughts more for those who are unfamiliar with them, but I was also concerned about triggering readers who experience them. I’m glad you were able to quickly find a good explanation that was helpful. I know I felt much better after learning that intrusive thoughts are something that other people experience and it wasn’t just me.

      Thank you (and everyone) for the good wishes. I’m getting excited for tomorrow!

    2. 250 would work for me. Not 260 – it’s not a nice round number. I like 2,3,5, 10, 25, 50 is okay, 75 at a push, 100, 250, 1000, then it struggles. Now I couldn’t cope with 336 – the six doesn’t feel like a proper ending. 337 on the end would be better because the 7 does end it – I think it’s the straight line going up. And 7 is supposed to be lucky (apparently). 360 might work because that’s a full circle. Funny old things numbers.
      (Totally agree with the learning more about myself comment – this one is making me think more about my unwanted, intrusive thoughts and the fact that I need to get a handle on them somehow)

    3. As an addendum to my comment above, maybe I am more of an aspie than I thought. I just checked and of course 521 IS a prime! I am OK at math, but not the sort of person who goes round thinking about whether something is a prime or not – I really don’t care. But clearly there is some subconscious aspie corner of my brain that is off on its own calculating primes and making a judgement on locker numbers! Weird.

  12. So glad you found time to write before the big adventure πŸ™‚

    Hopefully I did not wait too long before your start with my breakdown of 336, thought somebody else would come up with it.

    I read it as 2*2*5*5 + 2*2*3*3

    A real satisfying number: all the primes up to five included.at least onece and all of them as their squares.

  13. I agree they seem to be fairly intertwined. I have had ocd and a severe phobia as long as I can remember, but both got much worse when I was 12. For me, all of my ocd rituals are very easy to separate from my natural obsessive personality traits. My rituals are something I purposefully do in order to make myself feel assured (in a short term way unfortunately) that nothing bad is going to happen.
    The other aspects of ocd though, I find hard to tell if its just apart of my personality or not, such as obsessing over and over until Ive worked myself into a panic attack. The acute anxiety and fear that comes when a ritual isnt completed, I think thats also a personality trait. I dont like change in general, this trait doesnt help in trying to not give in to ocd rituals.
    Whatever the case, I definitely think I only developed ocd because of the general anxiety I suffered from just being myself. It probably comes out in different ways for different people, but I know it didnt come from nowhere or a unrelated cause, it came about because it was the best way I could cope with being generally scared of various things as a kid.

    1. That’s an interesting link – anxiety being the precursor for your OCD. Perhaps that’s my OCD seems more prevalent in people on the spectrum. I can also see how autistic dislike of change feeds into sustaining OCD repetition and rituals as well as increasing anxiety in general.

  14. If I did not miss it among the comments: Can counting or repeating phrases be considered as something in between a tool and a compulsion? When my levels of anxiety reaches critical levels, counting up to sixty (seconds, listening to heartbeat, …) or mantras like ‘om mani padme hum’ get switched on like by remote control. Classical stimming for me involves other levels of stress and different triggers.

    Counting, praying and the likes of it are listed among classical compulsory behavior traits (http://www.anxietybc.com/resources/ocd.php). I wonder, however, if they can also occur as an automated but evolved coping mechanism?

    1. Counting or repeating a mantra is a classic stress-reduction or panic-attack defusing (pretty sure that’s the wrong word?) technique so I think it can be a coping strategy as much as a compulsion. Although in a way, compulsion do seem to be coping strategies at times because some people use them as a distraction from or a talisman against obsessions.

    1. I’ve seen that, yes. There is a great deal of overlap among the three conditions which I think is good to recognize and acknowledge. But I don’t think ADHD or OCD fit the spectrum because they lack some of the key traits like sensory differences. There is the concept of “autistic cousins” which I like a lot, though.

  15. Could you please do a post on what being neuro-typical is actually like… I mean, like how it’s different to being AS? I can’t help but read everything about AS and just think, “Yeah, but everyone’s like that”. I can’t find anything anywhere that tells you what makes these AS characteristics not typical.

    Am I the only one confused by this? I still can’t figure out what it is I’m doing that’s so different to the people around me! My husband tries to explain but the things he points out about NTs just sound so irrational I can’t get my head around why I’m the one who’s classed as autistic!

    Please help!

    1. When I was diagnosed I was given a fantastic book called “autism: a guide for adults following diagnosis”. It’s mostly about NTs and how to understand and relate to them. I don’t know if it’s available outside the NHS adult autism services, but it was really good to read something aimed at me rather than about me.

  16. I love your description of feeling the difference. I hadn’t thought of that approach for untangling related things, I think it will be useful. thank you.

    1. Most of my thinking seems to run toward conceptual interpretation of things, which often comes out as gut feelings and instincts. I find it useful though sometimes frustrating when it comes to trying to explain it to others.

  17. Heehee, tricky, no? When I last went to pay my power bill, she folded it in half (print inside) and stapled the receipt to it. I took the staple out right there, gave it back, and told her I keep different records at home. Soon as I got home, I opened it up, stapled the receipt in the corner to the back like it was supposed to, and filed it away. I guess I can’t blame her, I know from working with the public it’s a wonder half the people on the street have their clothes on forward and their shoes on the correct feet and don’t wander freely into oncoming freight trucks, but still it really bugs me when somebody messes with my documents.

  18. There are good practical or sensory reasons for all of my obsessive tendencies. I’d probably say my compulsions are mostly in aid of my sensory regulation too, but I have nothing to say in defence of my intrusive thoughts. They’re so vivid they’re almost hallucinations (“non-psychotic pseudo-hallucination”) is what my doctor dubbed it.

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