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Related post for My favourite book essays
In the dining room at Queensmill, a west London school for children with autism, spotting the truly extraordinary moments can be tricky. Matthew, for example, sits at a table wearing ear protectors in a dazzling shade of Day-Glo green, but there’s nothing extraordinary about that. They’re used to reduce the sensory inputs he might otherwise find overwhelming. Like a number of the kids here, he wears them every day. No, the really extraordinary thing is also the most banal: it’s the full plate of food in front of him, the one that he’s busy clearing. “This was a boy who was eating so little he’d become a cause for serious concern,” says Jude Ragan, headteacher of Queensmill. “It was all about how we could get him to eat three or four chickpeas. We worried about anorexia. Now look at him.”
The explanation for Matthew’s newfound enthusiasm for his lunch, and for what Ragan describes quite simply as a revolution in her school, is standing behind the counter at the other end of the plain white dining room. He’s a Brazilian man called Djalma Lucio Polli de Carvalho – Lucio for short – and he’s their chef. “I never used to look forward to lunch at school,” Ragan says. “Then Lucio arrived and now I do. He just makes us smile at lunchtime. The benefit he brings to us is incalculable.”
This is not merely another story of a school meals service revolutionised by the arrival of a trained chef, determined to prepare everything from scratch. It’s also about the vital therapeutic role good food can play in the lives of a community that needs it most. It is about the pleasures of the table that so many of us take for granted being extended to people for whom the commonplace is a struggle. And it’s about preparing vulnerable children for the realities of life beyond school.
Queensmill, near Shepherd’s Bush in west London, has around 140 pupils between the ages of two and 19. Many are non-verbal, and use pictogram-based systems – both electronic and paper-based – to communicate. As Ragan puts it, they are children with “autism which causes them severe and significant difficulties”. Many autistic people, and their carers, campaign tirelessly against the stigmatisation of the condition. As a result there’s an understandable instinct to keep the narrative as positive as possible. And yet, while there are undoubtedly those who can point to the many ways in which it has enriched their lives, there are others, like those at Queensmill, who face very great challenges.
I'm autistic. When you assess my needs, this is what you must know
One of those is around the sensory overload of food and feeding. “Children with autism can have a very difficult relationship with food,” says Ragan, a highly respected expert on the education of the autistic, who has worked in the field since the late 1960s. “They have such high levels of stress and fear of the world that their poor digestive systems are always in a turmoil. They can have sensory sensitivities that make smells repellent to them.”
Caroline Bulmer, a specialist occupational therapist at Queensmill, agrees. “A lot of our children are hyper-sensitive to different textures and temperatures,” she says. “But the way this presents itself can be very varied. They can like crunch or heat, because they need a sensory hit. Others may head in the opposite direction towards bland foods. What’s more, these things can change for individuals depending on their mood and how much they’ve slept.”
There can also be the imperative of a predictable routine, from the use of exactly the same plate and cutlery, to the need to be offered precisely the same brands of food. Breaking these patterns is not simply a matter of will or parental authority, however much ignorant outside agencies might suggest otherwise. “For the parents it’s a massive deal,” Bulmer says. It interferes hugely with the dynamic of family life, creates an extra layer of health worries and piles on the guilt. “Some of our parents will admit to force feeding at some point.” That, she says, simply doesn’t work. These are children who, for a whole range of complex reasons, may just find themselves unable to eat. “The knock-on effect is hunger,” Bulmer says. “Quite often they don’t even know they’re hungry. They just know they aren’t comfortable.”
It doesn’t help if the food is also truly awful as it plainly once was at Queensmill. Until a couple of years ago the school occupied a site with a tiny kitchen, meaning the food was prepared off-site and then shoved onto heated trolleys. “I begged for better food,” says Ragan. “I asked teachers and parents to write down all of the foods that do entice our children and sent them on. No, the caterers said, and quoted the Nutritional Guidelines at me. I would say there is no nutritional value because the kids aren’t eating it.” The impact wasn’t just on the pupils, but also on the 150 or so staff, who do a very demanding job. “They deserve a good meal and they weren’t getting one.” Eventually, Ragan advertised for a school cook. Lucio answered.
I find him, in the hour before lunch, in his bright airy kitchen, a massive step up from the pokey facilities he first encountered when he joined at the old site. Today he is shovelling trays of chicken with hunks of lemon and garlic, into the oven. There are deep tins of roasted butternut squash, sweet potato and courgette and golf-ball sized arancini full of mozzarella. There are glossy salads of feta and olives, because many of his children like a big salty hit, and others of beetroot and orange.
Lucio, who is 45, trained originally in Brazil as a journalist. He followed friends to the UK in 1999 where, needing a job, he turned to cooking. “I always liked cooking,” he says. “I learnt with my mother and grandmother.” He ended up working for contract caterers Leith’s at the Law Society, Goldman Sachs and the Royal Albert Hall among others. Looking for a less stressful life, he then took on a job at a nursery until a friend told him about the vacancy at Queensmill. Did he know anything about autism? “I had a girlfriend with an autistic nephew,” he says. “So yes.” Though, as with all staff at the school, he also underwent training in the condition.
Lucio says his job is a balancing act. On the one hand he has a responsibility to expand what the kids get to eat. “When I arrived the menu was on a two-week cycle. I increased that to three weeks and now I’m going to four. Potatoes used to come only as chips or new potatoes. Now I’m trying things like Lyonnaise.” Taped to the wall is that week’s menu, a mixture of crowd pleasers such as spaghetti bolognese and fried pollock, alongside chickpea and vegetable curry and salads of apple and celery, and tomato, red onion and basil. On average he says his meal cost is £1.20.
The food is there for them. You have to be willing to let them look and leave
He notes what goes well, but then adapts it just a little so that gentle change is introduced. “As well as everything else, I’m preparing the kids for the outside world. They can’t just assume it’s always going to be fish fingers, peas and chips out there.” At the same time he has to avoid being precious. “The food is there for them. You have to be willing to let them look and leave.” He does small portions for those who aren’t sure but might come back, and is ready with hefty seconds for those who are. “Sometimes we have to keep ingredients separate on the plate.” And he has to be prepared for those who might reject absolutely everything he has on offer. “Lucio always has a sandwich or a plate of pasta tucked away somewhere,” Ragan says.
He also handles the more refined dietary requests, like those of a 15-year-old boy called Finn who for a long while favoured things that were black, like Oreos and burnt toast. “He used to burn his own toast which would bring the fire brigade,” Ragan tells me. “Now they phone us up when there’s an alarm and ask whether Finn has been burning the toast again.” At lunchtime, Lucio makes the toast for him, gently reducing the level of burn so that now it is merely a shade of brown.
Shortly before lunch I sit down for coffee with Lynn and Fiona, mothers to Matthew and Finn. Both admit it’s not easy to be relaxed about eating issues with their kids. “It’s incredibly demoralising if you cook food and he won’t eat it,” says Lynn. Fiona agrees. “There’s this whole sense that you’re a bad mother.” With the school’s support they are now able to accept that their strapping 15-year-old boys are actually fine, and that it’s OK to accept some of their more curious eating habits. “Our view,” Ragan says, “is that if it’s not hurting them and it’s not illegal we go with it.”
The mothers compare notes: the way Matthew at one point insisted on eating only white bread, cream crackers, rice cakes and digestive biscuits; how Finn will eat only one brand of chicken dippers. “It’s absolute hell if producers change the packaging because he notices and you have to find a way to reassure him it’s the same product,” Fiona says. For a while he used to eat oranges in the bath because they were messy. We agree this was a wise way to approach the mucky business of orange eating. More seriously, their behaviour can have implications for family life. “It’s hard to go on a picnic or to a friend’s for lunch or to a restaurant,” Fiona says.
They both agree that the school is helpful at removing the emotion that is ever present at home. “I was absolutely astonished when Matthew started eating,” Lynn says. “Since the new year he’s eating things like curries that he would never have touched before. The fact is our children have very little control over their own lives and Lucio’s food has given them the opportunity to try things.”
Lunchtime in the two dining rooms – one for the smallest kids, another for the older pupils – is a noisy affair. Like the entire white cube building, the dining rooms are a “low arousal” space with little in the way of defining features. The kids are the defining feature. I watch, alongside Ragan. Some have very complex routines. One will eat with a mirror facing their food and with a weighted blanket and pillow on their lap. “As I’ve said, if it helps them we go with it,” Ragan says, “and we work from there.”
There is noise and clatter, and large teenagers running from one end of the room to the other, long limbs filling the space. Moving between them are members of staff with plates piled high with Lucio’s roast chicken and roasted vegetables. “There’s no inhibition with autism,” Ragan says. “If they don’t want something they may well throw it over their shoulder.” I ask her what first attracted her to working with children like these, a job she steps away from on a daily basis this summer as finally she retires. “They are strange and wonderful,” she says. “They’ve got a lack of guile. They are delightful, innocent funny children. But their lives are bloody tough and so are those of their parents.”
As a result she understands fully why some parents go off in search of “cures”, especially ones involving food. The internet is full of hack claims, for example, that cutting out gluten and casein can serve as a treatment, despite the fact it has been discredited by multiple peer-reviewed studies.
Ragan does not disguise her disdain for those sorts of diets and their false promise. Eventually, she says, most of the children put on them come back to school lunches. Looking at the food coming out of Lucio’s kitchen it’s not hard to see why.
I ask what the impact of Lucio’s cooking has been on the school. Ragan thinks. It’s multifaceted she says. Lunch used to be a stressful moment in the day. “Tables used to be thrown over, that sort of thing. That’s stopped. Because the kids are eating, obviously they aren’t hungry which means the afternoons are better. The teachers feel properly cared for, which they deserve to be. But mostly we can just take pleasure in food. It’s a part of the day we all enjoy.” And all because of a compact Brazilian man with a goatee beard who was determined to do the very best job he could.
After the rush and noise of the past hour, lunch is coming to an end. The floor is being swept of the food that had found its way down there. Lucio seems exhilarated. “You saw for yourself,” he says. “Service here is intense.” I ask him about hopes for the future. He grins. “Maybe if there are ever Michelin stars for school meals I could have one here.” And with that he returns to serving up the plates of lunch that have changed the lives of the teachers and pupils of Queensmill school.
Autism and mealtimes
The diagnostic criteria for autism include deficits in social interaction and communication, as well as difficulties managing change. This can mean that the dynamic of mealtimes, both on the level of choices and social exchanges, can be very challenging for some people with autism.
Those challenges can manifest themselves in crippling anxiety or fear, particularly around moments in the day such as mealtimes.
People with autism can display hyper-sensitivity to food textures, heat and flavour. This can result in both a demand for especially bland foods or, in contrast, foods which, perhaps through crunchiness or saltiness, provide a sensory hit
While a rigidity of diet – a pronounced liking for a very narrow range of foods – is quite common, the need to separate ingredients either on one plate or onto several, is relatively rare.
Some people propose a gluten- and casein-free diet as a “treatment” for autism. However, repeated peer-reviewed studies have found no evidence to support this. The guidelines from the UK’s National Institute of Care and Excellence (Nice) specifically say that gluten and casein-free diets should not be prescribed or used.