Time and space in autismland


[image shows an old clock face, stuck on quarter to six]

I spent a day at work this week where I only talked to people when I needed to or wanted to. I was genuinely surprised at how much better I felt at the end of the day. Instead of using up precious resources to perform exhausting and non-essential social acts, I ended the day with resources to spare. Spare resources means having time and space to choose things I want to do, not being restricted to only things I have to do.

When I talk about my resources, I mostly mean my cognitive and emotional capacity. My ability to think and cope fluctuates depending on the demands placed on me. This includes demands from other people and demands I place on myself, alongside family, cultural and societal demands. Managing these demands requires time and space. Time to think, plan and recover. Space to be me and to remove myself from demands.

I spend a lot of time planning and preparing for the day and the days ahead. I perform a series of mental calculations working out how best to prepare for demands and how I plan to recover afterwards. As well as thinking time, every demand requires time before and after. A lot of my time is spent thinking about and calculating time.

My two consecutive working days every week use up four days of my week. The day before is taken up with preparing, worrying, planning. The day after is spent recovering. If I have a dentist appointment, need to go shopping, visit the bank or attend a meeting at my son’s school, I go through the same process, allowing time before and after. I try to make sure these activities are spread out to allow sufficient time in between for necessary preparation and recovery time.

Ordinary activities seem to take up more time for me than for many people, even something as simple as my car needing a service. Most people drop their car at the garage and get on with their day, knowing the garage will phone at some point. They might worry about an unexpected bill, but their day carries on as usual.

For me, I first have to phone the garage. This takes time planning the call and rehearsing what I need to say. Then I have to plan and rehearse for dropping off the car. I then need to be prepared for the phone call from the garage to tell me the car is ready or to give permission to carry out repairs. After these actions I spend time going over and analysing the interaction, fretting about faux pas and all the things I forgot to say and ask.

I find myself unable to do anything until I’ve heard from the garage. I worry that if I start something I might be interrupted. Being interrupted is one of my least favourite things. If I start a task I need to know how long I will spend doing it and have a plan in mind for the next task.

If the garage haven’t phoned by the time they said they would, I worry further. Should I wait or should I phone? What if I gave them the wrong number? What if they forgot about my car? What if me phoning takes the mechanic away from my car, delaying the service? Will the mechanic be annoyed I’ve phoned? Will I come across as rude for phoning when he said he would call? Am I being a nuisance? What exactly is the convention and why didn’t anyone teach me?

Managing my time effectively provides a foundation for my days. Sequencing demands makes them easier to manage. But if my day is disrupted I struggle to move forwards. If I have to miss a part of my routine it is almost impossible sometimes to do anything at all. When my boiler broke, and I was unable to have my planned bath that morning, I found it impossible to do any of my planned tasks that day. I couldn’t move to the next task as I hadn’t completed the first. It seems irrational and illogical and really quite flaky, but this is how it is.

I also spend a lot of time prevaricating and avoiding demands. I am aware that I need to do certain things (tidy a room, carry out repairs, email school, weeding) but I put them off. It doesn’t stop me thinking about these things, I just find it hard to move from thinking to doing. I waste a lot of time.

Problems with transitions between activities are often talked about in regard to autistic children. Us parents work hard to find ways to bridge transitions and make them easier for our children. We might use visual schedules, timers, verbal reminders or create novel ways to bridge the gaps. I need to find better ways to support transitions in my own life. I need to find a way to make the start of new activities and demands easier for me. I need ways to better manage disruption. I don’t want to waste so much time.

For me, space is both an internal and an external factor. I need inner mental space to think and I need outer physical space too, free of the demands of other people.

Having mental space and the capacity to use my emotional and cognitive abilities as best I can is largely dependent on the absence of demands and the presence of physical space. Physical space for me isn’t about vast swathes of uninterrupted countryside (though that would be nice) or large indoor spaces. It’s about having a physical space where I feel comfortable and protected, a space where I won’t feel overwhelmed by social or sensory demands.

City centres, busy supermarkets, tourist attractions in the height of summer and open plan workspaces all take up too much space and can result in me shutting down, unable to perform all but the most basic functions. If I can hold it together at the time I might meltdown later. But even a meltdown requires space. You can’t release the pressure until you’ve escaped the vacuum, which may not be a scientifically correct analogy, but it is how it feels to me.

Finding ways to create space can be challenging when there competing demands on my time. But it is essential. My ‘special interests’ both create and occupy space. When I am engaging in my crafting activities I become consumed by the process, but it also frees space for other thinking. I am more able and more constructive when I am engaged in my chosen activities. The filling of space by choice rather than by demand seems to open up more space. It makes me more capable and more competent.

What I am realising is that though I have plenty of time, I struggle to find space. The time I waste on planning, preparing and recovering stems from a combination of anxiety and executive functioning problems. I am trapped in a vicious cycle of demands, anxiety and poor organisation. I need to make time and space for the things which relieve the pressures, and then I may gain some time and space to deal more effectively with the demands.

Moving forwards, having spent a day ignoring non-essential social demands, I realise more than ever that I need to find ways to remove, ignore or sidestep some demands so that I have some time and space left for me. It won’t be easy, I have many years of social expectations and habits to change. But I’m going to try.

A day in the life of a ‘food refuser’


My son has a severely restricted diet and, like many autistic people, he has strong sensory aversions to the appearance, smell, texture and tastes of a variety of foodstuffs.

He was breastfed and weaning started well. He tried and enjoyed a range of the usual weaning foods but slowly started refusing foods he had previously enjoyed. By the time he was 3 he was refusing to eat most food offered and by the time he started school his diet had settled into a now familiar routine of Marmite sandwiches, Marmite rice cakes, yoghurt, smoothies and fig rolls (fig newtons).



This image shows a plate holding crustless Marmite sandwiches, a small yoghurt and a multivitamin tablet. Alongside is a carton of smoothie. This is a standard breakfast for my son.

Sometimes the bread will be toasted. The carton of smoothie is vital as he refuses to eat fruit and vegetables, apart from a very occasional banana (which must be at an optimum level of ripeness, have no blemishes and, open easily and in a tidy fashion). Supplementing with a multi-vitamin and mineral tablet is vital to top up the essential nutrients he lacks in his diet.

Breakfast is the easiest meal of the day in many ways. It is almost always eaten at home and is fairly easily replicated if we are away.



This image shows crustless Marmite sandwiches, a chocolate chip brioche and a Frusli cereal bar. On a school day he will take a packed lunch of Nutella sandwiches and a small chocolate bar. He does not have butter in his sandwiches and dislikes the way Marmite soaks into the bread.

Sometimes the brioche is swapped out for a crepe, and sometimes the Frusli is replaced with fig rolls. If we go out for the day we have to take a packed lunch as finding a place to eat which will have suitable options available is unlikely. The cereal bar is a new introduction to his diet and followed an extensive tasting session to find easy snacks for out and about.



This image shows a bowl of Marmite rice cakes. They are served in a bowl as my son struggles with the sensations of eating from the bag. On a school day he will have these rice cakes when he gets home from school and they have become part of his after-school decompression routine.



This image shows 3 plates. One plate holds some well-done smoked streaky bacon. One plate holds crustless Marmite sandwiches and a pot of chocolate mousse. One plate holds a piece of homemade chocolate birthday cake.

My son has not eaten what might be considered a ‘proper dinner’ for many years. The last such meal was spaghetti bolognese about 7 years ago.

Bacon is the only meat my son will eat, and he would happily eat it every day. The sandwiches at dinner time are often replaced by a toasted bagel or little rolls, but always with Marmite. The chocolate mousse on this occasion was a treat and this element would usually be a yoghurt. Homemade cakes are a good way to introduce some eggs and butter into his diet and cocoa contains trace minerals.

He will occasionally eat very dark chocolate which offers some micro-nutrients and iron. Nutella contains some nuts, as do occasional Ferrero Rocher and peanut M&Ms. His favourite Innocent smoothies now come in varieties which include beetroot and carrot. Every little bit of goodness, wherever it comes from, helps when a diet is so restricted.

Despite the limited nature of his diet, my son is healthy, growing, developing and learning. An analysis by a dietician a few years ago found very little lacking and we were able to make little changes to address these deficiencies.

What have I learned?

  • Some children will not ‘eat when they are hungry enough’. A child like mine would rather starve than eat unpalatable food.
  • Hidden food will be discovered. I have still not been forgiven for the smidgen of soft cheese in a Marmite sandwich 10 years ago.
  • Hiding food in a favoured food might lead to the refusal to eat that food again. Trust is important. I ignored the advice to blend tofu (!) into a smoothie because smoothies are my son’s only reliably consumed source of fruit and vegetables.
  • No, he won’t copy his peers and eat what they eat. He doesn’t even notice his peers, let alone want to be like them.
  • Growing our own fruit and vegetables is fun, but his aversions and sensitivities are too powerful to overcome by novelty.
  • Getting him involved in cooking, ditto.
  • Just because he tried it and ate it once does not mean he will continue.
  • Carrying out ‘scientific’ tasting sessions with score charts has resulted in small successes.
  • Agreed changes and diversions are more likely to be accepted than subterfuge. My son needed to up his fibre and protein, we discussed a range of sources and he agreed to eat wholemeal/seeded breads and bacon.
  • It is ok not to eat together. My son eats at his chosen meal times and likes us to chat at the table as he eats. He often comes and talks to us when we eat our meals, depending what it is, he likes the smell of Italian and Indian foods but not the smell of fish or Chinese takeaway.

I am hopeful that my son will broaden his diet as he gets older. I try to make sure he can identify different foods and he has learned to cook a few basic meals. We talk about food production, sourcing, ethics and welfare. It is important he has a vocabulary to draw from should he choose to become more adventurous in the future.

I used to worry a lot about my son’s diet. It’s an area where parents face a lot of judgement and get given a lot of unsolicited advice. It’s hard not to think we aren’t trying hard enough, though I’ve yet to encounter a parent of a child with a restricted diet who hasn’t tried very hard indeed.