In a previous post I reflected on the reasons why I didn’t pursue dietary intervention with Dylan when he was young; his autistic behaviour, I decided, was probably not 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 vegetable, served one way (I have considered colouring chips orange as deterrent).
I’ve used some of the images to illustrate this post; as well as being underwhelmed visually, if this were a multi-sensory blog you wouldn’t be able to smell much either. The least bland food in the list is probably vegetarian kievs; these are a relatively recent addition to Dylan’s diet which gives me hope that he may accept a wider range of tastes and smells eventually. The kievs are a familiar brand, made of quorn and beige in colour; these factors probably encouraged Dylan to try them. Gingerbread men are spicy too but Dylan makes an exception for them, I think, because he associates these with his Gran.
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 he trusts. When Linda McCartney changed the sausage seasoning, however, Dylan avoided other products in the range (which had previously been his favourite). As food producers try to excite and delight our taste buds, Dylan withdraws his custom.
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 have been some surprises. Pesto for example. True he picks out every single pine kernel, but the colour, smell and taste are for some reason perfectly acceptable to Dylan. Building on this I have introduced mozzarella and pesto escalopes (in a quorn range Dylan likes) and have recently tried him with 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. It makes me happy to offer Dylan pesto or spinach and ricotta pasta because it feels healthier than some of his other choices; I also like to give Dylan veggie fingers because that way I sneak tiny pieces of carrot and pea past him (the only time his vegetable-detecting radar seems not to work).
Dylan’s list of 50 foods is notable for its tally of only one vegetable. 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.
Sugar and spice
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; in the absence of obvious environmental explanations, Dylan has been referred for neurological assessments.
I should perhaps be more explicit about the behaviours. They usually emerge suddenly in that immediately beforehand Dylan appears happily engaged in an activity. Incidents have happened at home, respite, day centre, indoors and outdoors, and with the full range of people who support Dylan. Dylan will typically begin with trance-like behaviour; his eyes will glaze over and often he will stare transfixed at his own hands, wiggling his fingers. By this point Dylan is unreachable, unresponsive to attempts to communicate and refusing touch. The trance phase is usually followed by wild jumping.
Dylan has always jumped, something I have considered a communicative act (I have written a little about my attempts to make sense of Dylan’s jumping here). Recently, however, Dylan’s jumping has changed; he throws himself around violently and wildly with immense force, putting himself at risk as well as others. Dylan is extremely distressed during these times; it is not jumping that is bringing him pleasure or relief. Jumping is now a transitional phase to a more challenging stage in which Dylan attacks his carer, usually by tearing at their ears. Resolution can come quickly or take several hours and afterwards Dylan seems to have little or no memory of events.
I must stress, for those who don’t know him personally, how unlike Dylan this behaviour is; it has been a shock to everyone involved with his care as Dylan has always been considered a gentle young man. At one school review I was told that his behaviour chart was quite unusual; the only incidents recorded that year were letting off the fire extinguisher twice and some cup-smashing incidents. Against this profile, the last few months have been hard to fathom; the change has been so sudden and extreme I have been more or less convinced that the only possible explanation was neurological.
And 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?
The Milkybars are not on me
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.
Dylan didn’t eat a lot of these previously; he was allowed one item for pudding after his evening meal and soft drinks two or three times a week. I know that Dylan consumed more sugary products than he was used to when he first started at his day centre but this was quickly picked up and dealt with; from his day centre records Dylan was not consuming excessive sugar there either. My understanding, however, is that if an intolerance develops even the smallest amount can trigger a response.
Dylan is now on two charts: one recording behaviours and one recording what he eats and drinks. Since starting the new regime there have been just two incidents (on days three and 10) compared to the previous pattern of almost daily incidents. For some of the time Dylan and I were away from home, something which will have made the change in diet both more and less difficult for Dylan. On the plus side the change of routine may have helped him to accept an altered diet; less helpfully, seaside resorts are full of sugar-eating opportunities. Dylan accepted the new food rules, however, and on the fifth incident-free day I was all but convinced I had cracked the sugar code. Although a later incident reminded me of the need for caution I am sufficiently persuaded by the link to have revised my view of autism and food intolerance.
During this time I too have been sugar-free; how could I eat an ice cream while saying ‘No’ to Dylan? At the moment I’m reading Caroline Knapp’s Drinking: A Love Story, a memoir about getting sober. The book has encouraged me to reassess my own decision to give up drinking six years ago (which you can read about here). I have also found myself thinking about addiction more generally; giving up sugar, I realise, could be as hard for Dylan as giving up drinking was for me. I’ve tried to help Dylan through the difficult early days by drawing on my own experience; 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. Whatever the outcome, 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