As I’ve mentioned before, food seems to have been the main site of struggle in relation to transition. Certainly it is a topic of constant discussion between the care home manager and myself; although there have been periods when the issues around Dylan’s diet have felt less pressing, they have never really been resolved. This week, the problem with food seems to have resurfaced.
Dylan has dumped some of his meals in the bin I am told. On these occasions he has, apparently, asked for the non-vegetarian meals he sees other residents eating. There have also been reports of Dylan having aggressive outbursts in the evenings, behaviours which may be linked to his frustration about meals. Whatever the explanation, it’s pretty clear that Dylan is not enjoying his food at the moment. Judging from his diary notes, the meals he is eating tend to be repetitive and don’t include the foods which used to be among his favourites. Meal times have always been a source of pleasure for Dylan and it troubles me that this is something we haven’t been able to get right so far in his transition to residential care.
It’s that time of year when I have food lists on post-it notes in my diary. On 14th December a post-it reads: Grilled Goat’s Cheese; Festive Nut Roast; Christmas Pudding. On the 17th December, meanwhile: Artichoke; Christmas Veggie Tart; Truffled Mushroom Wellington; Festive Brownie Sundae.
These are my own menu choices for Christmas socials with friends and colleagues. The meal on the 17th is with a small group of women from the workplace. Last year we went to a swanky venue in the Peak District but their vegetarian menu this year is disappointing. What do you do if you happen not to like the vegetarian dish on offer or – as was the case in this instance – a vegetarian diner is served a pasta dish for the starter and for the main meal? There isn’t a vegetarian ‘option’, I said to my friend as we were about to make a provisional booking : it’s only an option if you get to choose between more than one vegetarian dish. ‘You’re right’, she said. ‘Let’s go somewhere else this year’.
Choice is such an important part of our relationship with food; having some control over what we eat is significant not just for the pleasure it brings us but as part of our physical well-being and sense of identity. Because Dylan lacks mental capacity, however, his food choices tend to be driven by his desire for pleasure and to be informed by familiarity, rather than by any cultural or health concerns. Dylan doesn’t know what ‘being vegetarian’ means, other than it is a diet which is familiar to him. Equally, a learning disabled adult who has been brought up on a non-vegetarian diet wouldn’t understand the meaning of ‘eating meat’. In both instances, the adults have been acculturated to a particular diet through the social practices of the home.
A recent edition of The Food Programme (on BBC Radio 4) explored the role of food in the maintenance and well-being of communities in exile. Continuing traditions of diet and food preparation, the programme noted, allows families and communities to preserve their history and maintain a positive link with their past, thus supporting their sense of identity, belonging and home. For Dylan, food is also a potentially powerful link with the past, offering him comfort and familiarity as well as nourishing his relationship with family and his participation in the cultural practices of home.
A vegetarian diet is a healthy choice, particularly in the context of the dietary restrictions which autism can create. I have described elsewhere the importance of the senses in Dylan’s dietary preferences: generally speaking, food must lack colour, smell and flavour. This may sound unattractive but Dylan has sensory issues which mean he cannot tolerate certain foods. Dylan has therefore come to rely on products such as pasta, quorn and soya which suit his palate and which offer variety in so far as they are packaged in a variety of ways.
As these foods are also high in fibre and low in fat, they make a useful contribution to Dylan’s health. If these products were replaced with meat, Dylan would almost certainly increase his weight and cholesterol levels and, after a lifetime of eating vegetarian food, may also find animal products difficult to digest.
Dylan would not, however, know the difference between a vegetarian and non-vegetarian sausage if they appeared similar and the meat version wasn’t spiced. This is important in so far as it relates to the issue of choice. If someone offers Dylan a vegetarian kiev which contains quinoa and sweet potato, there isn’t the remotest chance he will put even a morsel in his mouth. Dylan does not like the smell, the colour, the texture or anything at all about that kiev. He will, in fact, put it in the bin. Just because Dylan is vegetarian it does not mean that he will eat everything packaged as ‘vegetarian’. We wouldn’t expect a non-vegetarian autistic person to eat all foods that aren’t vegetarian so why expect a vegetarian autistic person to eat anything with a ‘vegetarian’ label?
I am not remotely surprised that in this situation Dylan asked for one of the chicken kievs being eaten by the other residents: the meat version will have looked more familiar to Dylan as quorn kievs (which he does like) are not dissimilar visually. Whereas in Dylan’s shoes I would opt not to eat, rather than have meat, this is not a reasonable expectation for Dylan. Of course he would ask for the chicken kiev rather than the nasty spicy thing he has just dumped in the bin. And of course he will have no idea whatsoever why he is not allowed to have it; from Dylan’s perspective, this is simply unfair. Dylan, I would argue, did not have a meaningful choice in the same way the Christmas menu at the swanky restaurant did not offer me a choice. What Dylan needed was not a chicken kiev but a meaningful vegetarian option.
There have been some positive developments since Dylan moved to the care home. A separate storage area for Dylan’s food has been created, for example, and staff are now aware that Dylan does not eat meat. Not all the changes have been positive however; currently, for example, Dylan eats his meal separately from the other residents as it is assumed he will want the non-vegetarian option if he sees it. I don’t believe this is the case; providing Dylan is offered a choice of meals he likes, he should be perfectly happy with vegetarian food. Meal times have always been shared experiences at home so I dislike the thought of Dylan eating alone; he surely shouldn’t have to give up his lifetime diet in order to keep company?
When Dylan first moved to residential care there was a suggestion that my request he follow a vegetarian diet should go to a ‘Best Interest’ panel. Although this didn’t happen, there is a continued perception that vegetarianism involves a ‘loss of choice’ for Dylan and that it is ‘hard’ to follow the diet. Given that Dylan had a positive relationship with food while he lived at home, however, and enjoyed (within his beige limits) a range of vegetarian meals, I would argue that it is the residential setting, rather than Dylan, for whom this is challenging.
Clearly, the important thing is that Dylan starts to enjoy his meals again. What I don’t yet accept, however, is the suggestion that Dylan is making a proactive choice to eat meat (or ‘not to be vegetarian’). This could only really be considered a possibility once Dylan had rejected the vegetarian options he was previously happy to eat. As I’m not convinced this is where we are yet, I went food shopping for Dylan today; there should be more things which he likes available for him to eat next week.
It will be interesting to see whether this helps the situation. I hope so: I cannot believe that a move to residential care should require such radical change to a person’s diet, particularly given the cultural weight of food.
The photograph is of a ‘macaroni cheese flower’ I made for Dylan a while ago, when he was still living at home. It meets all his key requirements in terms of colour, flavour and smell 🙂