Maintaining Routine on the Autistic Spectrum
Maintaining a healthy routine can be an essential aspect of daily living when on the Autistic Spectrum, it can lead to stability and make life more bearable. Although it can also make life very complicated and build very big walls that can limit what someone is able to cope with. What many don’t understand is why it’s so important to those with Autism, what can be involved, how it interacts with other aspects of Autism or the repercussions of breaking that routine. I can only speak for myself on this matter so please remember all my opinions are my own and based on how I cope day to day.
Routine is essentially another coping strategy that I use to enable some form of daily function, the world can be chaotic, unpredictable, overwhelming, loud, bright, and exhausting with every aspect of daily living designed against someone with Autism no matter where you are on the spectrum. Almost 80% of the time I’m experiencing some form of sensory overload which I will mask especially when out of the home, the world can be a very confusing place especially when I’m in a new place or unfamiliar situation. Forming a routine has been a life saver! One of the most popular comments I get when explaining Autism to someone is, “Oh you’ve got spergers, you like routine don’t you” (my eye roll begins about here) “well we all must be a little autistic as everyone likes routine”. Before I go off on a tangent, or go on about how much I hate Aspergers being called “spergers” or shortened to some other ‘cute’ abbreviation. Having a routine, although yes, common to most, is not as simple when you’re on the Autistic Spectrum. Although it can vary greatly person to person, that saying rules are meant to be broken doesn’t really comprehend in my head. Routine is not simply just a routine of regular things I do in the day or a list of things in the diary to do on the same day every week in order to cope or stay organised, routine when you have Autism comes with many challenges with black and white rules and no inbetweens, heavily interlinked with obsessions and repetitive behaviour with set limits and rituals which you need to be completed, boundary’s which can’t be broken, preferred ways of doing things, set activities, sometimes there might be a great enthuses in speed and efficiency on certain tasks or a certain way you must do something in order to cope, and im certain that this list can be expanded person to person, if any of this is deviated for me, usually there will be repercussions in the way of extreme stress and anxiety, stimming, and potentially a high risk of endangering myself as I can become overwhelmed, especially if traveling outside of the home, using transport etc... Adapting or creating new routines can be extremely difficult as change didn’t come easy especially as life is so difficult to deal with day to day, when I do find any order in the chaos, I tend to grab hold of it if it makes the day go a little easier, however this makes it very hard to let go especially if it’s quite destructive or unhealthy.
Routine for me comes in two forms, to give you a brief idea: There’s the daily routine: Tasks I must do everyday, each with their own rituals, timing and way of doing things – Everything tends to come under the three W’s - (What, When, Where) this can include sleep, food, hair, washing, clothes, activities, toilet etc.. Daily routines don’t necessarily mean it’s time slotted into the day like a diary, one of the things I’ve learned to relax and adapt over the years, but when I do make my way through my daily routine, it needs to be done in that particular way in order to cope and not get muddled and disoriented. Days events: Essentially an internal mapped out schedule on steroids – When I’m working or when I was at school, college university etc… my routine tend to fit between a set boundary of hours per day including any appointment times, time I have free, travel time plus researched and google street mapped routes, I will have plotted fastest routes avoiding anything that stresses me out driving, or walking, I will have checked out the place I have an appointment, along with ensuring I can use self-service petrol stations, and in case of shopping, shops with self-service tills. I will work out disabled access if I’m having a bad day with fibromyalgia, again the list is rather long. Establishing a routine or ensuring a consistency which I could expect on a daily basis has been a lifelong pursuit, although it can heavily interlink with obsessive and repetitive behaviours as I mentioned above, because I have OCD, sometimes it’s hard to know where one starts and the other stops, it is almost like a drug, which must be taken everyday, it is on my mind day and night, and if that routine in any way has been disrupted, suddenly everything falls apart and my ability to cope and hold myself together disappears. It’s an aspect that at times I still struggle to understand as it goes against everything that I am as a person, it’s a behaviour I know I’m doing but can’t stop myself. It’s also something which I have forced myself to manage and reign in and control the older I’ve become better allowing for disruption because of my difficult family background and required responsibilities from a very young age, requiring me to find ways of coping when my planned days routine breaks. That doesn’t mean I don’t feel the effects inside causing panic, anxiety, sometimes sensory overload, even a fit of anger just for something not going the way I had planned. Other serious repercussions that I discovered after my breakdown, with complete loss of normality and routine that came with a full-time job, I found I was very susceptible to developing a sleep disorder and my already poor eating habits made my eating disorder harder to manage. “Repetitive behaviour in autistic people is not the same as OCD (Obsessive Compulsive Disorder), which is an anxiety disorder in which people experience repetitive thoughts and behaviours that are upsetting to them.”
I was once asked to describe what it feels, the best way I could describe it is that feeling you feel say perhaps when you first walk into your new home, every thing looks and feels different the first time, everything is unfamiliar and strange like your in a strangers home, but when you settle and live in your home for a while, you establish how you feel in your home, you become comfortable, settled and confident of your environment, you build your bubble, but if you think back to the first day you came to you home, you might remember how new, different, strange it might have looked at the time compared to how you now feel. Whether that example makes any sense I don’t know, but for me, that is what a well practice routine with all its quirks is for me, it’s comfortable, predictable, a protective bubble that feels familiar, when it’s broken, I feel weird, disturbed, overwhelmed, anxious and frightened, almost like I’m looking at something for the first time so I feel very off, it’s very hard to describe.
Breaking a person’s routine on the spectrum can result in quite varied reactions, sone can cope and mask how they are feeling, however some of the most common reactions I’ve seen through my work is acting out, anger or aggression, panic attacks or abusive language/behaviour just to name a few things, I have seen many going from the extreme where they have very restricted routines with rigid rules and procedures involved, and at times make their life very difficult with any deviation causing huge distress and essentially backing themselves into a very small box, but then I’ve also seen the other extreme where someone has an almost non existent routine to the point they are all over the place struggling to manage almost basic aspects of living which can sometimes lead to developing sleep/eating disorder and depression, but yet they can handle last minute meetings, changes in their environment, new or stressful locations, trips out for last minute appointments. I appreciate that this subject can be quite a minefield for each of us on the spectrum to navigate, I cannot speak for all, and I haven’t written about coping strategies and ways to manage, or gome onto too much detail about certain aspects as I’m determined not to write another epic novel or two parter for a blog piece, perhaps in a follow up may be in order very soon. I hope those who have read this piece, that I have given you a little insight into this one aspect that can be very difficult for so many. Hopefully if you might meet someone on the spectrum in the future, please give them some extra leeway and remember the struggles going on inside are not always noticeable.