Why Routine Is So Important to Many Autistic People
Maintaining a healthy routine can be an essential aspect of daily living if you’re on the autistic spectrum. It can lead to stability and make life more bearable, but also build big walls that can limit someone’s ability to cope. Many people don’t understand why it can be so important to those with autism, what can be involved, how it interacts with other aspects of autism or the repercussions of breaking a 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.
I use routine as a coping strategy to enable my daily functioning. The world can be chaotic, unpredictable, overwhelming, loud, bright and exhausting; every aspect of daily living is seemingly designed against someone with autism. Almost 80 percent of the time I’m experiencing some form of sensory overload, which I will mask, especially when I’m not at home and in a new place or unfamiliar situation. Forming a routine has been a lifesaver!
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, but they continue, “Well we all must be a little autistic as everyone likes routine.” First of all, I want to mention how much I hate Asperger’s being called “spergers” or shortened to some other “cute” abbreviation. Second, having a routine is not as simple when you’re on the autistic spectrum.
Routine is not simply just a schedule or a list of things in my diary to do on the same day every week to cope or stay organized. My routine comes with many challenges, black and white rules with no in-betweens, obsessions and repetitive behavior with set limits and rituals, and boundaries which can’t be broken. If I deviate from these routines, there will usually be repercussions in the form of extreme stress and anxiety, stimming, and potentially a high risk of endangering myself. I can become overwhelmed, especially if traveling outside of the home, using public transportation etc. Adapting or creating new routines can be extremely difficult; when I do find any order in the chaos, I tend to grab hold of it. However, this makes it very hard to let go, especially if the routine is 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 every day, each with their own rituals, timing and way of doing things. Everything tends to come under the three Ws — 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; that’s 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 a particular way for me to cope and not get muddled and disoriented.
Then there’s the day’s events: essentially an internal mapped out schedule on steroids. When I’m working or when I was at school, college, university etc. my routine tends to fit between a set boundary of hours per day, including any appointment times, free time and 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 where I have an appointment, along with ensuring I can use self-service petrol stations, and in case of shopping, stores with self-checkout. I will work out disabled access if I’m having a bad day with fibromyalgia. The list is rather long.
Establishing a routine or ensuring consistency has been a lifelong pursuit, although it can heavily interlink with obsessive and repetitive behaviors as I mentioned above. I also have OCD, so sometimes it’s hard to know where one starts and the other stops. It is almost like a drug which must be taken every day; it is on my mind day and night, and if that routine has been disrupted, suddenly everything falls apart and my ability to cope and hold myself together disappears. I still struggle to understand this as it goes against everything I am as a person. I know I’m doing it, but can’t stop myself.
I have forced myself to reign in and control my response to disruption because of my difficult family background and having responsibilities from a very young age, requiring me to find ways of coping when my planned routine breaks. That doesn’t mean I don’t feel the effects inside causing panic, anxiety, sometimes sensory overload, even fits of anger just for something not going the way I planned. After my breakdown, with the 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.
I was once asked to describe how it feels. The best way I could describe it is the way you feel when you first walk into your new home. Everything looks and feels different; everything is unfamiliar, like you’re in a stranger’s home. But when you settle and live in your home for a while, you become comfortable, settled and confident in your environment; you build your bubble. That is what a well-practiced 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.
When a person on the spectrum has their routine broken, it can result in quite varied reactions. Some can cope and mask how they are feeling, however some of the most common reactions I’ve seen through my work include acting out, anger or aggression, panic attacks or abusive language/behavior just to name a few. I have met some people who have very restricted routines with rigid rules and procedures involved, who make their life very difficult with any deviation causing huge distress. But I’ve also seen the other extreme where someone has an almost non-existent routine, to the point they are struggling to manage basic aspects of living and may develop a sleep or eating disorder and depression. Yet they can handle last-minute meetings, changes in their environment, new or stressful locations and 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 hope I have given you a little insight into this issue that can be very difficult for so many. If you 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.
Getty image by Tatomm.