Autism and Self Care

Recently I’ve noticed the term ‘self-care’ cropping up all over the internet, particularly in the context of mental illness and long term disabilities. It’s quite an ambiguous term, and probably means something different to everyone depending on the stare of their health. However, I feel some clarification is required. There are many misconceptions about self-care, particularly the assumption that looking after yourself just involves laziness, selfishness and extra treats. That could not be farther from the truth. What self-care means to me is making sure that my health needs are met and I get enough rest to continue working productively. Occasionally that does mean watching a movie and munching on a bag of crisps to cheer myself up. Mostly, it means earlier bedtimes, regular medication, going to the gym and changing my surroundings in order to create an autism friendly environment. I’m going to be discussing self-care from the point of view of my Asperger’s Syndrome and Anxiety Disorder. However, I would like to encourage everyone to take precautions and look after themselves, regardless of whether they are diagnosed with a specific disability or health condition.

When I noticed my mental health going downhill, my first strategy was to drink a couple of glasses of wine after I’d had a stressful day. This helped me to unwind and go to sleep. However, two glasses gradually became a bottle and a half, and a stressful day became every day, regardless of how much pressure I was under. I came to realise that I was no longer keeping myself healthy. After a quick chat with some family, my next act of self-care was to hand my box of red wine over to my mother. I don’t know where the wine is, and I don’t want to know. If I ask for wine by the glass my family are happy to give it to me, and through this technique I can ensure that I rarely exceed one glass a night. It would be easy to say that my parents shouldn’t have to do that. I should be able to have the wine on my nightstand and resist the temptation to drink it all at once. But I can’t. And I’ve only managed to drink in moderation by acknowledging the fact that I can’t resist chugging a whole bottle if that’s what’s in front of me.

It’s early days yet, but giving up excessive drinking has proven to be a much easier act of self-care than I thought. My cravings are low, my overall health has improved and I’m managing to relax at night. I would not describe myself as an alcoholic or an addict. I’ve found it much more useful to examine my drinking from the perspective of my autism. People on the autism spectrum often develop obsessions and implement rigid routines in order to make themselves feel safe, to the point where any changes to the routine cause a great deal of anxiety. For me, obsessive behaviour generally manifests itself through watching the same tv show over and over at the same time each day, or repeating the same craft activity until I am forced to throw away most of what I’ve made because there just isn’t room for it in the house. If I find a food I like, I can also end up eating it for every meal until it becomes a regular part of my routine. It’s clear that I had become obsessed with drinking wine in the same way I’ve been obsessed with making sock monsters, or watching The Mighty Boosh over and over. Heavy drinking became an important part of my routine, and I wanted to keep drinking not because I am addicted, but because I have autism, and the slightest change to my routine can cause a huge amount of anxiety and stress.

This brings me to another aspect of self-care that I think is important for anyone on the autism spectrum: regularly changing your routine. Although this is scary, it’s necessary. I don’t want to end up going through the same routine each day, repeating actions that might make me feel safe but have no consequences in the wider world. I don’t want to get trapped in Groundhog Day, or worse, in an autistic bubble where I am consumed by my own interests and never consider other people’s needs. These changes to my routine can be small, like trying a new food, craft activity or tv show. They can also be big, like changing my work hours, making a new friend or joining a night class. (I realise that this kind of thing probably seems small to a neurotypical, but for someone on the autism spectrum, it’s huge). It’s also important to change your routine because one day, life is bound to change it for you. You might visit the same restaurant every Tuesday lunchtime, only to find that one day it shuts down and you need somewhere new to eat. You might suddenly lose your job, and have to forge a whole new routine from scratch to stop yourself going mad with boredom. By deliberately making small changes to my daily routine, I’m hoping to gradually reduce the level of anxiety that a sudden, unexpected change will cause.

Another aspect of autism I’ve had to implement self-care for is sensory overload. People on the autism spectrum often process sensory information differently, meaning they can be severely overwhelmed or underwhelmed by certain smells, sights, noises, tastes and textures. For me, this means that bright electrical light, and most levels of sunlight can cause extreme disorientation and some pain. I’m also incapable of filtering out background noise, meaning I hear everything at the same volume. For example, I meet a friend for lunch. I can hear the friend talking to me, the woman next to me breathing, the man wiping tables down, the radio, plates being bashed about in the kitchen, the door opening and closing… it all builds up into one insane symphony. As you can imagine, this causes a great deal of anxiety and affects my ability to concentrate.

Earlier I mentioned changing my surroundings into an autism friendly environment. A few years ago I had my bedroom walls painted dark purple. This choice baffled most people, and when I have friends over they often complain that they can’t tell if the lights on or off. However it’s a perfect atmosphere for me. The walls absorb most of the light, meaning I don’t feel blinded and can even open the curtains, letting in natural light without having to wear sunglasses. There’s not much I can do about sound, but I do like to listen to rock and metal when I’m alone, which effectively drowns out most of the noises that would normally bother me. I also have a few sets of ear plugs stowed away for emergencies. It’s much harder to control my sensory environment when I’m out and about. If I’m meeting a friend who’s also on the autism spectrum we generally choose a venue that has low light levels and won’t be too busy. Otherwise… I’ve got my iPod, I’ve got my sunglasses, and I generally won’t leave the  house without them. Most people view this as a fashion statement, but for me it’s a very important act of self-care that minimises stress and anxiety. I won’t pretend it doesn’t upset me when people say things like ‘OMG. Sunglasses in winter- you must be a vampire!’ But I’d much rather be stared at and gossiped about than be in pain.

The final aspect of self-care I want to discuss is the most obvious one, and for that reason it’s often overlooked. I look after myself by ensuring I get enough rest. Most people would agree that they need around eight hours of sleep a day to stay healthy and function effectively. I need an absolute minimum of ten. You’re probably thinking ‘lazy bitch, you should be able to suck it up and settle for eight hours or less like the rest of us!’ If I sleep for under ten hours a day, my mental and physical health will deteriorate rapidly; I will have trouble concentrating at work and am likely to suffer paranoia and panic attacks. I know this because I’ve tried sleeping as little as possible before and it just didn’t work. I wasn’t looking after my health. Furthermore, most experts agree that it’s perfectly normal for people on the autism spectrum to need more sleep than neurotypicals. This is because we process things differently, and our brains are often working in overdrive as we try to filter out the sensory information that others can easily ignore. The kind of social situations most people view as relaxing are also incredibly hard work and draining for people on the autism spectrum, because the social skills most people take for granted don’t come naturally to us. That doesn’t mean autistic people don’t enjoy socialising. It just means that we need to allow ourselves adequate time to rest after meeting friends at a bar, a party or a coffee shop.

Furthermore, adequate rest doesn’t just mean sleep. It also means giving myself time to transfer between different activities. If I go straight from a doctor’s appointment to work, or from one work shift to another it’s likely to push my anxiety levels up and make it difficult for me to concentrate. So I avoid rushing as much as possible. It doesn’t always work, but I try to schedule half hour breaks between one job and another, and occasionally I will even refuse to attend one meeting if I know I would have to leave it early to attend another. Most people think this is a selfish act that makes things difficult for others. To a certain extent it is. But it’s how I take care of myself.

If I don’t follow my self-care routines then my mental health worsens very quickly. I become prone to faints and panic attacks. Not only does this behaviour come across as highly unprofessional in the workplace, it also causes a great deal of anxiety for other staff members. They are forced to look after me, meaning neither of us can do our job properly. Mostly, if I faint or hyperventilate in the workplace, university or other professional environments I’m sent home for the rest of the day. Whoever is sending me home usually does so with a concerned smile, patting me on the shoulder and urging me to ‘look after myself.’ This is often the same person who dismisses me as lazy or selfish when I try to look after myself by refusing to rush around or work unreasonable hours!

Self-care is not selfish. It does not involve giving yourself huge amounts of treats, ignoring your workload or being lazy. By employing the correct self-care methods I can ensure I remain productive and get my work done. But that’s not my priority. My priority is staying healthy and happy, and while others judge me for doing so I am gradually learning to ignore them. I think a lot of the prejudice and negative stereotyping that surrounds self-care actually comes from envy. The one comment I hear the most is ‘Oh, well I did that even though it made me uncomfortable, so you should be able to!’ No. I will not compromise my health unnecessarily just to conform to someone else’s standards. Furthermore, self-care is not just for people with illnesses or disabilities. It’s for everyone. If you’re jealous of the fact that I take good care of myself then it’s probably time you start doing the same. No matter how important your job, or any other commitments you might have are, they are not more important than your health. Nothing is more important than your health.