In a previous post I reflected that I didn’t pursue dietary intervention with Dylan when he was young because his autism did not appear to be exacerbated by food intolerance. I did try to intervene on more general health grounds but when this proved unsuccessful I resigned myself to Dylan’s diet being less than perfect. As a food-aware vegetarian this was an aspect of parenting an autistic child I found hard to accept; I learned to tolerate Dylan’s food choices, however, by trying to understand them.
50 shades of beige
baguettes| crumpets| English muffins| Belgian waffles| Scotch pancakes| brioche| croissants| pop tarts| cornflakes| white wraps| white rolls| milk| butter| white cheddar cheese| edam cheese| Dairylea slices| fromage frais| yoghurt| potatoes| bananas| apples| cheese pasties| macaroni cheese| spaghetti| tortelloni | cheese sauce| cheese pizza| cheesy potato cakes| cheese pancakes| quorn nuggets| chips| veggie fingers| vegetarian kievs| vegetarian schnitzels| vegetarian meat balls| vegetarian sausages| Yorkshire puddings| vegetarian escalopes| Pringles| quavers| mini cheddars| angel cake| fondant fancies| donuts| syrup| ice cream| gingerbread men| millionaires shortbread| cookies| white chocolate|
Food and the senses
Again and again, when trying to understand Dylan’s world, I return to the senses. What distinguishes Dylan’s foods is that they are largely colour-free, flavour-free and odourless. I use the term ‘beige’ to describe that neutral range of shades from pale straw through to caramel. Some of the more adventurous foods in Dylan’s list throw in a pastel: the pale yellow of a banana, a light green apple or the pink and lemon of angel cake. Essentially, however, Dylan’s meals are beige.
I photograph Dylan’s meals so that I can offer him food choices and it was through this I noticed the colours tend to be neutral. Fresh pasta would be ruined for Dylan by the addition of sauce: with one exception it must be served plain with a sprinkling of grated cheese. Pizza must be unadorned with no tomato sauce visible through the uncoloured cheese. Main course selections can be accompanied by Dylan’s one beige vegetable, served one way (chips).
Although Dylan wouldn’t dream of eating highly-spiced or smelly food he is fascinated by it. One of his few clear words is ‘marmite’; he frequently fetches the marmite pot from the kitchen and walks around with it, pretending to smell then saying ‘phewee’ while waving his hand across his nose. If I offer him a jar or bottle to sniff he will gingerly approach it, simultaneously intrigued and repelled. But eat or drink it he will not – and his taste buds are so finally tuned he can detect rogue substances instantly.
There are some surprises on the list though. Pesto for example. True Dylan picks out every single pine kernel, but the colour, smell and taste are for some reason perfectly acceptable. Building on this I have introduced mozzarella and pesto escalopes in a quorn range Dylan likes and have recently offered spinach and ricotta tortelloni; I figured Dylan might mistake the green stuffing for pesto (he is suspicious I think, but has eaten it a couple of times). I also like to give Dylan veggie fingers because I can sneak tiny pieces of carrot and pea past him (the only time Dylan’s vegetable-detecting radar seems not to work). The least bland food in the list is probably vegetarian kievs; these are a relatively recent addition to Dylan’s diet and give me hope that he may accept a wider range of tastes and smells eventually.
I am happy to support the aspects of Dylan’s diet which are linked to his sensory needs; I wouldn’t want to serve him foods which cause distress because of the way they smell, taste, look or feel. While this means Dylan’s diet is bland and repetitive, if he enjoys it and is basically healthy I don’t object. Dylan has developed strategies for selecting foods which meet his requirements for low sensory arousal.There is a kosher range at one supermarket, for example, which Dylan trusts. If food producers try to excite and delight our taste buds, however, Dylan withdraws his custom; when Linda McCartney changed the sausage seasoning Dylan avoided other products in the range which had previously been his favourite.
Sugar and spice
Although I fed Dylan a wide range of pureed fruits and vegetables as a baby he has not eaten a vegetable since (except for potatoes and the fragments of pea and carrot in veggie fingers). I assume his aversion to them is partly about colour. Dylan will, however, tolerate some bright fruits: strawberries, cherries, plums and grapes are now acceptable. I have wondered whether Dylan’s liking for these is linked to his love of sweets: they have acquired the status of honorary Haribos, perhaps. Because I should note that, in addition to the 50 beige foods, Dylan eats brightly coloured jelly-type and candy sweets if I let him.
As I have noted in an earlier post I am careful about Dylan’s intake of sweets; although they can be an effective reward as part of a behaviour training programme I am uncomfortable with their use. Given Dylan’s restricted diet I have felt a particular need to limit Dylan’s sugar intake; while I might not insist he eats the foods he has an aversion to, I can at least restrict unhealthy items he is unhealthily predisposed to. This was easier when Dylan was younger and I had more responsibility for his diet and food choices than I do now he is an adult. In the last couple of weeks this has become a potentially significant issue.
If you follow our blog you will know that Dylan has developed behaviours recently that have been causing concern. I have been keeping charts logging incidents but have struggled to find a pattern to the behaviours. Then, a couple of weeks ago, a woman who hadn’t met Dylan before came to assess him. I shared Dylan’s charts; she was interested and emailed later to say she had been racking her brain for possible answers. I might want to look more closely at food, she said – had I noticed that events often took place around meal times. Could Dylan be suffering from reflux? Feeling sick? Could he be diabetic perhaps? Had I considered spicy food? Or sugar perhaps?
Because the changes in Dylan’s behaviour had been so dramatic I had been looking for something in his life that had changed; now I was faced with the possibility that the behaviours were linked to something that had remained the same. That night I stayed up researching food intolerance and aggressive behaviour; a suggestion that cropped up again and again was sugar and, more specifically, white chocolate. White chocolate is Dylan’s favourite treat. He always picks a white chocolate egg at Easter. When we shop he chooses a milky bar. He selects white chocolate chip for the cookie tin. People who know Dylan give him white chocolate for a present. This had always seemed fairly innocuous to me.
The milky bar kid is strong and tough, and only the best is good enough
the creamiest milk, the whitest bar, the good taste that’s in MILKYBAR!
When I looked back through Dylan’s behaviour chart I found details which lent support to the sugar hypothesis: the day Dylan had a major incident coming down the valley he had bought an ice cream on the way up; a terrible attack one Sunday evening happened 40 minutes after Dylan had eaten a half bag of white buttons. I decided this was worth pursuing and moved Dylan on to a low sugar diet: no chocolate, biscuits, cakes, ice cream or soft drinks. Since making this change to Dylan’s diet there have been just two incidents compared to the previous pattern of almost daily incidents. Although I don’t think diet is a complete explanation for Dylan’s behaviour, I am persuaded that it could be part of it.
At the moment I’m reading Caroline Knapp’s Drinking: A Love Story, a memoir about getting sober. The book has encouraged me to reflect on my decision to give up drinking six years ago (which you can read about here). Giving up sugar, it occurred to me, could be as hard for Dylan as giving up drinking was for me. I know the situation is different in that a decision has been made for rather than by Dylan but I have his long term interests at heart and hopefully some understanding of his short term struggle. To help Dylan through the difficult early days I have been sugar-free too; how could I eat an ice cream while saying ‘No’ to Dylan? Whatever the long term outcome of this trial, the shade of beige looks considerably less innocuous to me now.
Caroline Knapp (1996) Drinking: a love story. Dial Press
All photographs taken by Liz except for the milky bar image which is via wikipedia and the strawberry haribo image which is via needsweets.co.uk