Autistic need for sameness: an intrinsic part of autism or a soothing mechanism to cope with anxiety?

I have been cogitating on what is often considered an essential part of autism – a need for routine and sameness, inflexibility, and from my personal experience, it’s more often about anxiety than a real need for rigid routines and thinking. I think we need to differentiate between things done because they help with anxiety and things that actually are part of being autistic, because lumping them all together is unhelpful.

I can think of a few reasons why I might be insistent on no changes of plans:

• I know where I’m going and can prepare in advance for any sensory overload – sensory differences will be returned to later;
• I know where the nearest toilets are – my interoception isn’t great and I need to know I can get to a toilet quickly;
• I am anxious about being late – going the same way every time means I know I’ll get there on time;
• I’ve planned it in advance because that helps with my anxiety and a change means I have to do the planning all over again to get my anxiety back under control.

Most of those reasons are sensory and anxiety. Sensory is a part of autism for some people. Anxiety can affect anyone, but nobody says ‘Oh well, you’re left handed, of course you’re going to be anxious, it’s just a part of being a person with left handedness’.

A lot of these things could be rolled in with Stereotyped or repetitive motor movements, because what is being described in that phrase is often stimming – self-stimulating/self-soothing behaviours. We stim in response to anxiety. It’s a repetitive movement that helps to reconnect with the body and distract the brain when it’s going off into flights of terror.

Logically, to me at least, it makes sense. You do something, a Bad Thing happens, result Anxiety. Next time you do it differently. The Bad Thing doesn’t happen. So, from now on do it that way, because obviously it stops the Bad Thing happening. Human brains aren’t logical, but working out why someone would insist that a thing be done a certain way, or that they must always take this or that route is, if you understand that they’re acting to calm anxiety.

Let’s take an example from the highlighted section – ritualised greeting. Say as a child Mum always told you to say ‘hello, how are you?’, and one time you forgot because the book you were reading or the game you were playing with your trains was way more interesting or you hadn’t heard a visitor arrive, you got told off for being rude. Being rude is bad, it’s against the rules. You can’t tell when it’s appropriate to greet someone with ‘Hello, how are you?’ and when it isn’t because neurotypical social greeting conventions haven’t been explained to you. But they have explained that it’s bad to be rude. So, you follow the rule, ‘Don’t be rude’ by using the same greeting ‘Hello, how are you?’ out of fear (anxiety) that you’ll get it wrong and break the rules – be rude and get told off again.

Over time, what was a childhood lesson in appropriate manners that others might have learnt the nuances of becomes an ingrained ritual. It’s not an intrinsic part of being autistic, it’s a survival mechanism and a way to keep anxiety at bay.

These rigid routines are another expression of the same impulse as stimming: to calm the brain, to reduce anxiety. What’s causing the anxiety? I could be really snarky and say living in world where you’re told you’re wrong in every way would probably be anxiety inducing. But I’m going to be nice – and honest.

Actually, bugger that, I’m just going to be honest. When you’ve been bullied and criticised from a young age and you’ve imbibed the idea that whatever you do it’ll be the wrong thing, when you find a way to do something that doesn’t cause bullying or criticism to come your way, you stick to it. You struggle to understand the rules of your society and try to learn them by observation, sometimes it goes right, sometimes wrong. Every reaction reinforces your understanding in terms of performance but not the reasoning. No on explains the reasoning, or the social rules, because they are able to pick them up from the cultural milieu. If you’re autistic, that’s really hard to do. Most of the rules are completely illogical and so much of it is surface level stuff. But humans are tribal, performing the correct actions and scripts are important to group identity and solidarity. If your brain doesn’t naturally pick up on and remember those codes then you stick out.

That gets you abused, and when you do things that help regulate your emotions or express emotions in ways that don’t fit the ‘social code’ you get abused some more.

I suspect that ‘rigid thinking patterns’ may be a development from ‘following the rules explicitly given to you keeps you out of trouble’. It becomes a habit – you do things a certain way for so long because it keeps you safe and your anxiety in check and then you can’t do things any differently because you’ve worn that groove so deeply you can’t climb out. I believe, given the right support and understanding, especially if the root cause of the anxiety is addressed, the rigidity goes. Certainly, many of those touted as great autistic scientists and inventors don’t seem to have been rigid in their thinking, quite the opposite in fact. Being able to look at things from different angles certainly helps me see things in ways others don’t. (And I’m not a great scientist or inventor).

Are people really surprised we’re so anxious? You can have the most loving, supportive home where stimming is normal and expressing happiness with your whole body is accepted, where people understand the need for soft fabrics and food that doesn’t make you sick, and low lighting etc (adjust for your own sensory needs), and that sometimes emotions are so big they need time to be processed but as soon as you leave that environment none of that matters. It’s probably why we tend to be reluctant to leave the house – at home we can control the environment for sensory stimuli and are free to be ourselves. Outside, people will judge you for adapting your immediate environment for comfort (like wearing headphones and sunglasses, like wearing casual clothes), they’ll judge you for not taking part in the social rituals or for expressing yourself too ‘loudly’ – verbally or physically. Oh, and if you so much as dare to question the status quo, to do anything not socially mandated by your age, gender, ethnicity, social group etc. because there’s no rationale behind rules like ‘boys can’t play with doll’ or ‘girls have to like pink’ and you’re a boy who likes pink and making up stories for your dolls, people act as though the world is coming to an end. Everyone learns that by the time they go to school, and it’s reinforced at school. How are we not going to be anxious?

Thus, anxiety in autistic people, and our expressions of anxiety, are a product of society, not intrinsic to being autistic. Maybe society needs to stop being so judgemental and abusive when autistic people express themselves, and we might be less anxious, less repetitive in our behaviours, less distressed?

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Returning to sensory matters, I can think of a very good reason why someone would wear the same clothes or eat the same food every day:

Because they can. Eat it or wear it, I mean. What might look like repetitive or limited behaviour from the outside, from the inside might be a logical choice, If everything else makes you ill, why would you stop doing the thing that doesn’t make you ill?

For many autistic people sensory stimuli are the cause of distress, so only eating Heinz Tomato soup and buttered Warburtons Toastie bread might be a case of ‘I like the texture, it doesn’t hurt/make me want to vomit etc.’ rather than repetitive behaviours. Wearing certain clothes because they don’t cause sensory problems, for instance the material is really soft, has limited seams or no labels because they’re scratchy and hurt, isn’t a case of ‘has no understanding of appropriate clothing’, but a case of ‘these clothes don’t hurt me to wear them’.

Same with taking clothes off. I’ve heard about the children who insist on stripping off the first chance the get and how ’embarrassing’ it is. Honestly, until I got comfortable pjs – mens, two sizes too big in jersey – I would not wear clothes if I could avoid it. Until I got my diagnosis and really started looking at things, I would wear the clothes I thought were appropriate, or that I’d planned to wear because I had an idea in my head that i’d fixated on, rather than the clothes I was comfortable in. I’d been told all my life to wear certain clothes because I looked scruffy in comfortable clothes, (I’m fat, it’s hard to find clothes that look good) so I did even if they weren’t comfortable. I realised a lot of my clothing was actively painful for me to wear and I was torturing myself for other peoples’ ideas of appropriate.

If I were a parent, I’d be more interested in why they were taking their clothes off. Are they too tight? Too hot? Scratching? Painful fabric? Rather than scold a child for getting naked, let them choose the clothes they’re actually comfortable in.

Sensory differences are definitely a part of autism for a lot of autistic people. My hypothesis is that our brains aren’t able to screen out a lot of the ‘background’ stimuli and are also very sensitive to some stimuli because there are a lot of unpruned connections. As such we feel everything. Or nothing, depending on individual hypo and hyper sensitivities. For instance, I can feel the slight differences in the weave of my t-shirt on in a particular part of my back and it’s itching. The other day I cut the back of my hand and felt nothing, no pain at all, though it bled heavily. I only noticed when my sleeve was wet, because the wet fabric irritated me.

If I’m going somewhere, I need to know about the lighting, the likely busyness of the place, if there’s somewhere I can ‘escape’ to, the temperature and options for food and drink. I need this information so that I can mitigate any overstimulation and cope with the sensory environment and I become anxious if I don’t have it or if my efforts to keep my hypersensitivities in check aren’t successful. So we’re circling back around to anxiety and distress behaviours but this time the origin is something intrinsic to me as an autistic person – the way my brain responds to environmental stimuli.

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I want to look at one final example in 2B – difficulties with transitions.

Difficulties with transitions are definitely an autistic thing. In my experience it’s because of two possible reasons:

• I’m so focussed on the thing I’m doing there isn’t brain room for a new task until I’ve finished what I’m doing or at a place I can comfortably stop, like the end of a row of crochet or a chapter of a book. These are logical places to stop. They are natural end points in a task that allow me to think ‘Ah, time to ….’ while my brain is expecting it because of a visual difference. I’m reading about monotropism theory but I haven’t got very far into the book so I don’t know if this has already been worked out as part of that.
• Terror. Something like moving house, changing jobs, even working in a different part of the same company, is enough to freeze me up. My brain shuts down and I just can’t do anything. I need to process the change, which takes longer than for non-autistic people, and then for something like moving house I have to make small changes on the road to getting to the end result. I need details and I need to work through things in my own time. Is this another anxiety response? Yes and no. Yes, the unknown is difficult to cope with, especially if I’ve got my environment comfortable and I don’t know what the next one will be like, plus I have all the non-autistic anxiety inducers like money to worry about. No, in that my brain just takes longer to process things. It’s busy, there’s a queue, join it.

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The problem with diagnostic criteria is that they focus too much on external expressions and ignore the internal causes and reasoning. All of it is how the neurotypical world responds to autistic processing, not an actual description of autistic processing. As I’ve laid out, much of the apparently essential nature of autism, is in my experience, anxiety responses, and those things that are part of being autistic – differences in sensory processing and processing changes – are hidden by the diagnostic criteria lumping them all in to one thing. Much of ‘B:2’ could be separated into ‘B:1’ and ‘B:4’, with ‘B:1’ being retitled: repetitive behaviours caused by anxiety.

Also, why is intense interest in a subject pathological (B:3)?

I’ve probably not expressed myself as well as I want to, and I’m probably just repeating things already said and written by people much more intelligent and better educated on the subject than I am. It’s just observations from living autistically for thirty-six and a half years and developing some insight once I got my diagnosis and had a bit of direction to look in,

Thanks for reading, sorry if I’ve bored you. It was in my head, so I had to get it out before I lost another night ruminating on the subject.