Eating issues

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      Eating issues
      For many families, meal times are a way to bond, relax or stay healthy. However, families of children with autism may find meal times, and eating generally, are a lot trickier.

      Mother trying to feed her child
      For many families, meal times are a way to bond, relax or stay healthy.  However, families of children with autism may find meal times, and eating generally, are a lot trickier.

      Food is sometimes not a comfortable issue for children with autism: it can be a subject of high anxiety and even serious behaviour problems. Inevitably this makes it a subject of anxiety for parents as well: keeping your child healthy and nourished feels like a basic minimum requirement for being a mum or dad, and when it’s this difficult, you can feel awful. So: let’s talk about what’s going on.

      What sorts of problems are common?
      Different children have different issues with food, and you might be one of the lucky families where it’s not that big a deal – but if you’re not, you’re certainly in the majority! Children with autism are so individual it’s impossible to cover every problem that food might create, but there are issues that come up with a lot of kids.

      Tantrums and meltdowns at mealtimes.
      Getting stressed over new foods – sometimes even if they’re being eaten by someone else or just sitting in the room.
      If they can be persuaded to taste a new food, gagging when they try to eat it.
      Being revolted by the smell of certain foods.
      Refusing to eat one or more food groups (often preferring carbohydrates such as pasta, noodles, rice, bread etc. – though this isn’t universal).
      Refusing to eat certain textures (e.g. crunchy or soft).
      Getting hung up on particular flavours – often salty or sweet, which makes healthy eating much harder.
      Needing either really strong or really bland food.
      Wanting foods to be a particular colour (often brown or beige).
      This by no means a complete list: food and autism can be an endless complication. Not all these problems have the same cause; some are more associated with anxiety, others with sensory issues.

      These common issues are difficult enough; their knock-on effects can cause further problems. For instance, it’s common for people with autism to eat either too much or too little. This tends to cause problems with general health and wellbeing, and trying to get your son or daughter to eat more or less than they want can lead to conflicts and behaviour problems. Refusing certain food groups also means missing important nutrients: even if the quantities are right, the quality may be lacking.

      Anorexia Nervosa
      Anorexia Nervosa is thought to be more common among people with autism, especially girls and women. Anorexia is a condition where people suffer extreme anxiety about being fat and/or wanting to be thin, and so restrict their intake of food, exercise to exhaustion and/or take laxatives or make themselves vomit. It’s a dangerous condition that can, in serious cases, lead to serious health damage or even death.

      When someone has autism, this complicates the diagnosis. If someone has difficulty communicating it can be hard to understand whether their thinking is characteristic of anorexia, but it’s also the case that people with autism are often hyperactive and so simply burn off a lot of calories for reasons that aren’t really about staying thin. However, the working estimate is that about 12% of girls and women with autism have some degree of anorexia.

      Some children with autism get into regurgitation. This means that they’ll vomit up and re-chew food that they’ve eaten previously. Obviously this is likely to cause social problems – families may be sympathetic, but it’s likely to gross out potential friends – but there are also health risks: the human gullet is not designed to withstand frequent exposure to stomach acid, and can get damaged as a result.

      Pica is also common. This is a behaviour in which a person persists in eating things that aren’t food, such as paper, clothing, dirt or plants. Apart from the usual concerns about picking up germs and ruining clothes, this can also become dangerous if the child eats something that’s poisonous (earth often has pesticides in it, for instance), or swallows something that could block or tear their digestive organs. The causes can vary – trying to compensate for mineral deficiencies, getting sensory feedback (especially if the child refuses hard and crisps foods), or just an inability to work out what’s food and what isn’t – but if your child is doing it, you really must see a doctor: they could hurt themselves.

      The chances are that if you’re a parent reading this you’ll be feeling pretty worried (if you weren’t already, which you very possibly were). Why on earth is all this happening?

      Why does autism mean eating problems?
      There are actually reasons for all this strange-seeming behaviour. Basically, they boil down to the fact that autism affects children both in how they think and how they experience sensations. Food, which is an emotional issue for everyone and a strong physical sensation besides, combines a lot of potential difficulties. Let’s take a look at the core impairments in the light of eating:

      When it’s hard to communicate with other people, it’s hard to choose what you’d like to eat and let other people know. It’s also hard to express that you’re hungry or that you’ve had enough. When it’s that difficult, it’s not surprising that mealtimes can feel like an ordeal.

      Social interaction
      Mealtimes generally involve social rules (sit up nicely, don’t play with your food, don’t spit), and children with autism can find social rules difficult to grasp. They also tend to be less influenced by social approval than most children (though the still very much need and want it), so eating with other people can just feel like more trouble than it’s worth: all rules and little reward.

      Flexibility of thinking
      Children with autism can find it hard to be adaptable. That means they can get stuck on certain foods, certain ways of preparing it, and/or certain ways of presenting it, and be seriously derailed if the packaging changes, you buy the wrong brand, they get the wrong plate, they sit in the wrong place at the table and so on. Food is nearly impossible to get exactly the same each time, but children with autism can find that tough to deal with.

      Medical issues
      Sometimes autism goes along with gastro-intestinal problems. Chronic constipation (sometimes extreme enough to cause a bowel obstruction); diarrhoea; inflammatory and irritable bowel conditions; allergies: are all more common in people with autism, especially in childhood. If these affect your child, then eating can lead to all sorts of problems: pain or discomfort, dehydration, lack of appetite and trouble sleeping – all of which are made worse if he or she can’t explain why they’re feeling so bad. With all this going on, it’s not surprising that some children simply decide they’d rather not eat at all – which means you need to call in medical help.

      Motor or sensory issues
      Children with autism are often either hypersensitive or under-sensitive to certain sensations, including food. Hence, a child whose mouth is very sensitive may only be able to stand bland or soft food, while a child whose mouth-sensations are dulled may crave very strong-tasting or crunchy foods to give them some stimulation. Other factors such as the temperature, smell and texture of the food, not to mention the sensory environment of the place where you eat, can all complicate matters. To add to this, some children with autism have motor problems that make it difficult for them to use their jaw properly when chewing and swallowing, or to use knives, forks and spoons for themselves.

      Children with autism are nobody’s fool. If you can’t communicate your wishes, you generally learn to get them met by other means – technically referred to as ‘behaviours’. If you can’t say ‘I’ve had enough’ but you notice that the meal ends if you throw food around, the solution is obvious: throw food when you’re full. If you can’t say ‘I want more’ or ‘I want something different’, but grabbing food off other people’s plates gets the same result, you keep grabbing. Parents need to be very alert to their own actions to make sure they aren’t accidentally reinforcing such behaviours – but one can also use cause-and-effect positively by, for instance, making it clear that your son or daughter only gets their favourite food if they finish their other food first.

      What can I do about this?
      Before you despair, don’t panic: there are things that a parent or carer can do to help their child manage food better. None of them are effort-free, but they do often make a difference.

      Step 1. The food diary
      Keep a log of what your son or daughter will and won’t eat. Take note of:

      The time of day when they eat.
      What kind of food.
      Where they ate.
      What else was in the room.
      How much they ate.


      Who else was there.
      The odds are good that you’ll start to spot patterns, and with that knowledge, you can start to make plans.

      Step 2. The routine
      Children with autism love routines. Use that. Yes, learning to manage without routines is a skill they’ll hopefully have to master too, but to get to that point they need to be well and healthy, and for that, they need to eat. Use routines now to establish good eating, and worry about phasing them out later.

      So, get some things the same each time. For instance:

      Plot out meal and snacktimes. Try using a visual schedule so your son or daughter knows what’s coming. When meals are more predictable, they’re less scary; if your child likes to eat a lot, it can also help regulate how much they get rather than eating all day.
      If talking is hard for your son or daughter, give them alternative ways to tell you what they want, such as letting them sort pictures of food (or even the food itself) into ‘like’ and ‘dislike’ piles. That way, you’ll hopefully have some information to work on when planning meals.
      Choose your son or daughter’s place at the table, and set up the eating space so it’s not too distracting. Try to avoid things like television and toys, keep the table fairly clear, and perhaps simplify the room in general (if you have the space in your home to manage that). Make the eating space a place where he or she can focus.
      Have a mealtime routine. Washing hands, setting the table, sitting down: all can be turned into soothing rituals that help them mentally prepare.
      Put a time limit on the meal. 15 or 30 minutes might work – you’ll know your child best – and once it’s over, move on to another activity. There may be a few tricky moments for the first few days, but it does communicate that mealtimes are for eating so you don’t feel hungry later.
      Limit the amount of food, not just on your child’s plate but within their sightline. That reduces frustration and can save tantrums.
      Set an example (technically known as ‘modelling behaviour’). Sit down and eat yourself, eating quietly, at a sensible pace, finishing what’s on your plate. You might also like to make a list of ‘family rules for mealtimes’, print it out and laminate it so it’s visible at the table. Follow it yourself so your son or daughter can see what good table manners look like.
      Present the food in different ways, and make it sound fun: ‘Look, pasta with tomatoes! This is exciting!’
      If your son or daughter behaves well, reward them immediately. Praise is good; you might also like to give stickers that build rewards to something really good, like time with an iPad.
      If your kid throws food, spits or otherwise misbehaves, grit your teeth and ignore it. When it’s hard to communicate, any way of getting attention can feel rewarding; getting mad may lead to more misbehaviour.
      Create a calm and patient atmosphere. You might put favourite music on in the background; be as relaxed as you can. (Or at least pretend to be!)
      What if it doesn’t work?
      We do our best, but autism is a challenging condition and sometimes parent-led mealtime interventions simply don’t cut it. Don’t beat yourself up: you’re not a bad parent; you’re just dealing with something difficult. At this point, you need to look for professional help. You might try:

      Your GP: They’re often the first port of call for a referral, and also will benefit from knowing the basics about your son or daughter’s health situation.
      Dentists: Some problems are caused by painful teeth or teething: it’s worth checking out.
      Dieticians: They can give you advice on healthy, balanced diets, including info about vitamins and minerals, as well as different approaches.
      Speech and language therapists: This one sounds counter-intuitive, but to chew and swallow you need to use jaw muscles, and SALTs can help with that.
      Occupational therapists: Sometimes children with autism benefit from eating aids. For instance, if they have sensory issues then weighted cutlery can be more comfortable for them, or if they have motor difficulties they might benefit from a plate guard so they can get food onto cutlery one-handed.
      A clinical psychologist or behavioural specialist: Sometimes you just can’t work out what’s at the root of problematic eating; a professional might be able to pinpoint the problem and give you advice on strategies.
      Few things upset parents more than eating problems: when it feels like your child is fighting your attempts to keep them alive it’s enough to drive you crazy. However, it really isn’t deliberate naughtiness and it isn’t a comment on your parenting either – it’s just one of those areas where the problems of autism intersect to cause a difficult situation. Keep reminding yourself that you’re doing your best; nobody who understands autism will blame you one bit for having difficulty with this, it’s just one of those things. There are ways of managing it – and it may be comforting to know that these problems do ease up somewhat as children get older. It may never be completely straightforward, but it can and does get better.

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