Put on your own oxygen mask: self care for the autism parent

Why do I need an oxygen mask?

The title of this post obviously refers to the air steward instructions for parents to put on their own oxygen mask before trying to help their children. The fairly self-evident point is that failure to take care of one’s own well-being will ultimately restrict our ability to take care of our dependents. 

Parenting: evolved

As parents, nature has hardwired us to create children and look after them. In evolutionary terms, the need for us to spread our genes as far and wide as possible to ensure the survival of the species means that our brain’s release of happy chemicals such as oxytocin (when we feel love) makes us sacrifice anything and everything to safeguard the continuity of our DNA. (For more explanation of our brains’ happy chemicals, check out the range of books by Loretta Breuning here). 

It seems throughout the Western world in the 20th century that this chemical bypassed a lot of dads, who managed to secure adequate delivery of happy chemicals while with their mates in the pub or on the golf course. With more and more women now working full-time, these carefree-dad-days seem to be disappearing from modern culture. Parents, regardless of gender or occupation, are stretched to adequately care for their kids. Add in the extra stress of having to manage a condition such as autism and this can be a lot to handle for mere (sleep-deprived) mortals. 

Getting to zero: prop yourself up with the 4 pillars

Former hedge fund manager turned author and podcaster, James Altucher, uses his own experience of losing his money, home, family and almost his sanity to emphasise how important it is to establish healthy routines to help you function in life. In his counter-cultural book, Choose Yourself, Altucher writes about the ‘4 Pillars’ of self-care:

  • Physical
  • Emotional
  • Spiritual
  • Intellectual
Taking care of the physical self

Obviously looking after the physical body helps to stave off diseases and helps us to function optimally in our daily lives. Healthy daily habits can quickly get forgotten about by busy parents; the lifelong nature of autism means that self-neglect by parents can become a chronic condition. 

Altucher suggests prioritising the fairly obvious regimes of sleep, diet and exercise.

(a) Sleep

Without adequate sleep our bodies and brains do not function well for long. Research published in 2017 from the David Geffen School of Medicine at the University of Los Angeles, California (UCLA) and Tel Aviv University in Israel confirms that sleep-deprived people experience memory lapses and may deal with distorted visual perception, as the communication between neurons is temporarily impaired. This is a problem which parents of young toddlers are very familiar with and the struggle to cope with daily life is often seen as a parental rite of passage. The upside is that eventually some sort of pattern is established in the child’s eating and sleeping routine, and something approximating normality returns. 

In children with chronic illnesses and lifelong conditions like autism, sleep deprivation can become a real problem for the parents. Mental acuity suffers, leading to frustration, poor productivity and even increasing the chance of an accident at work or while driving. If the lack of sleep continues into the longer term, it can affect your general health and put you at greater risk of obesity, high blood pressure, heart disease and diabetes. 

How to optimise sleep

Most people need about 8 hours of sleep every night; some need more, others can function perfectly well on 6 or 7 hours. Other than the amount of sleep you get, also important is the quality of sleep. Good sleep hygiene is important to ensure your body and brain get adequately recharged.  Many people like some light in the background such as the glow of street lights through the blinds or curtains; but studies such as Lewy et al (1980) indicate that light (especially ‘blue’ light, such as that from from the screens of computers, tablets and phones) can suppress the body’s production of melatonin which helps sleep. So for optimum sleep complete darkness is required. Turn off the phone, tablets and computers at least an hour before bed. Blackout blinds which are properly fitted can help; if this is impractical, a comfortable sleep mask is a practical solution which is also very helpful for daytime naps if required. Complete quiet is also helpful for optimal sleep. If you live in the countryside then this is easy; in urban areas it is much more challenging although simple ear plugs or even ear defenders, can dull any intrusive nocturnal noise. 

Most people sleep better with a slightly cool room, although establishing what you consider a ‘cool’ temperature is obviously a personal matter. In warm weather a fan or full air conditioning may be needed, also the tog rating of your duvet and bedding may have to be considered. If you are tossing and turning all night as you alternate between too hot and too cold, action is needed. You’re supposed to spend about one third of every day asleep, so it is really worth the investment in a comfortable bed, mattress, bedding and whatever other accessories you need to get the kip you deserve. 

(b) Diet

A healthy diet is of paramount importance to optimal physical health, although opinions vary massively as to what constitutes a ‘healthy’ diet. From vegan to paleo, vegetarian to ketogenic, the exact macronutrient profile of your diet is very much a personal choice and will probably be dictated by your own unique build, metabolism and taste preferences. I am not going to suggest one plan over another here, although general common sense maxims should be roughly adhered to such as:

  • Try to eat the required number of calories for your age, gender and activity profile;
  • Try to eat coloured (ie not white) vegetables, to ensure adequate minerals and nutrients in your diet;
  • Try to eat unprocessed food as much as possible, to avoid excess salt, sugar, saturated fats and artificial preservatives;
  • Drink plenty of water;
  • Moderate your alcohol intake;
  • Avoid narcotics

These principles are vague due to the need to allow enough flexibility for individuals to decide on the appropriate carbohydrate-protein-fat ratio which suits them. It is intended to keep the metaphorical vehicle that is your body between the hedges rather than the white lines. A lack of time is the enemy of good eating, as busy stressed people tend to end up thinking about food either when feelings of hunger surface or when breakfast/lunch/dinner times loom imminently. This tends to lead to impulsive, reactive dietary habits and ups the intake of fast food and processed food. This will spike your salt, sugar and fat content, over-supply you with unhealthy calories and under-supply your body of nutrients and minerals needed for optimal health. This will increase peaks and troughs in energy levels as your blood sugar oscillates and lead to more bad food choices (eg snacking) as you try to stave off sugar crashes. 

Making time to plan and prepare healthy meals is a major task for any parent, but is made all the more difficult for the autism parent by the need to consider multiple meal options per mealtime. Gluten intolerances or casein intolerances may require substitutions to family meals which are inconvenient and often more expensive. Also, sensory issues common amongst ASD children may further limit dietary variation, as the child refuses to eat beyond a very restricted number of foods. Still, if you can find the wherewithal, it is not impossible to meal prep for everybody, including the autistic child, without surrendering completely to the junk food juggernaut. The internet is awash with recipes for such meals and the homemade version is likely to be much more nutritious than the processed version. Although for those who are spitting / cursing / crying / laughing hysterically at the last paragraph: we feel your pain. Maybe put this on the long-term To-Do list for now and carry on surviving. Just. 

(c) Exercise

Yes, just what every exhausted autism parent needs: something to make you more tired!

Even if it is only for a short period (10-20 minutes per day), the benefits of exercise to the body, mind and spirit are long-celebrated. Studies such as this one by Blumenthal et al have shown that exercise can be as effective as antidepressant medication in improving mood in people suffering from depression. 

For those with support such as spouse or parent, perhaps getting out for a run can help exercise the body whilst purging the mind of all that stress and tension. For those less-athletically inclined, a long walk works nicely, especially if paired with a set of headphones and an audiobook or favourite podcast. Cycling works equally well and is less pounding on your joints although just remember you have to go back. Eventually. Weight training can help get rid of frustration whilst boosting your self-confidence as your muscles start to grow. Even if you don’t have support and cannot get out of the house at a time that suits exercise, bodyweight circuit training can give you the cathartic release you need to release tension and stress whilst building muscle mass and cardiovascular health. I love the Street Parking website which is aimed at stay-at-home mothers of young children to help them workout without much time or money or equipment. I also love former Crossfit guru Street Parking founder Mirandra Alcarez’ mantra: “More Than Nothing”. It’s a clever motivational tool as it lowers the bar just enough to avoid self-pitying self talk such as…..”What’s the point?”. 

Emotional self-care

Frankly, if you are sleeping well, have a balanced / healthy diet and are working out a couple or more times per week, it is likely that your emotions will be in pretty good shape also. For those who want to keep anxiety under control or just feel better, breathing exercises / meditation may be helpful. Meditation is more popular now than ever, as the stereotypes of chanting monks have now largely been forgotten about. Anything between 5 and 40 minutes per day of simply sitting, eyes closed and breathing deeply while counting your breaths, is all that is required. If you want some help, search on YouTube for 3 or 5 or 10 minute body scan, for guided meditation to relaxing music. For something more structure or personal, try a phone app such as Calm or Headspace, both of which are available on free trials. I have used both and found them to be very helpful in creating a habit of meditating, but I did eventually tire of the endless references to “filling up with liquid sunshine”. Extras such as chanting, levitating, finger cymbals and burning incense are extremely optional. Although they will fascinate the neighbours. 

Spiritual health & gratitude

Say thank you. Even if you don’t want to. Why should you? Because it is good for you. Studies (such as this one by Emmons et al) have indicated that expressing gratitude whether it be to God or the Universe or the cat, helps you to look outside of yourself and to find perspective. It is all too easy to get bogged down in negative emotions when we only focus on what is bad in our lives, and most of us are guilty of this to some extent. Being thankful for 2 or 3 things per day can be enough of a gentle reminder to us that there is some good in our lives, even if we have to look hard to see it. So, be selfish and take the time to say: thank you. 

Intellectual development (aka: learning stuff)

Learning new skills can give us a sense of increased control and mastery over our surroundings, so it is little wonder that it helps to be a lifelong learner. That is regardless of the practical career benefits which can accrue as a result of taking an evening class or enrolling in a distance learning course. The BBC Teach website suggests that reading fiction can not only draw us into a story which helps us escape our own problems, at least for a while, but also helps us to think about the characters in the story. This can help us to improve our emotional intelligence as we understand a range of perspectives and emotions, so improving our empathy for others. If all else fails, even a boring book can aid restfulness by making you fall asleep faster in bed. 

Your local library is a no-cost and easy way to access books. Online subscriptions such as Scribd and Kindle Unlimited can offer something for (almost) everyone. Can’t seem to make time to read? Audible offers an audiobook per month for only £7.99, which you can listen to in the car / on the train / in the gym while your eyes are otherwise engaged. Podcasts (from various sources; search in Spotify to start with) on all manner of topics are available free; many are long-form interviews of 1 or more hours, so you can really deep-dive into areas or people of interest to you. 

Summary

We’re all trying to out-work each other, both at work and in our personal lives. Destroying ourselves on the altar of family is self-defeating and frankly, bad parenting: why reinforce your child’s belief that he or she is the centre of the universe? Plus, your parenting powers are somewhat curtailed by serious illness so you need a more sustainable model. Look after your body, your mind, your spirit and your emotions. Then you’ll be able to better look after those you love.  

NEXT: Celebrities with autism: Anne Hegarty, The Governess