When we have a family, we have our ideas of what life will be like, and for many that will include meal times as away to bond and relax, and maintain a healthy body. However, families of children with ASC may find meal times, and eating generally, are a lot trickier.
Keeping your child healthy and nourished feels like a basic minimum requirement for being a parent, and when it’s this difficult, we can feel awful. The rise in anxiety in us as parents, can also further add to our child’s anxiety. Of course, issues around food is not limited to children.
All of us on the Spectrum can experience challenges that impact our relationship with food.
This is by no means a complete list: food and autism can be an endless complication.
Many of the issues are rooted in sensory sensitivities or anxiety, so our approach needs to be addressing the underlying issue. These challenges around food can then lead to further complications in overall health and wellbeing. For example, refusing certain food groups can lead to a deficiency in certain food groups and nutrients with a significant impact on overall health and wellbeing.
In some cases, the issues around food can be so significant that they become another diagnosis co-morbid with their ASC.
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.
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, or swallows something that could damage their internal organs. Sometime this can be the result of a mineral deficiency, other times getting sensory feedback, or just an inability to work out what’s food and what isn’t.
ARFID is characterised by a pattern of eating that avoids certain foods or food groups entirely and/or is restricted in quantity (eating small amounts). ARFID is different to other restrictive eating disorders in that:
- ARFID isn't affected by a person’s beliefs about the size and shape of their body
- Someone with ARFID doesn't limit their food to lose weight]
- ARFID doesn’t feature some of the other behaviours that can be associated with anorexia, bulimia, or OSFED, such as over-exercising
Having autism can make it hard to be adaptable. Getting stuck on certain foods, certain ways of preparing it, and/or certain ways of presenting it, are the result of this. Being seriously distressed 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 are all issues that can result in this challenge with flexibility of thinking. Food is nearly impossible to get exactly the same each time, but children with autism can find that tough to deal with. When you consider all those issues and variants it is hardly a surprise meal times can be a challenge.
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. Pain or discomfort, dehydration, lack of appetite and trouble sleeping can all result, and result is increasing reluctance to eat at all.
Individuals with autism are often either hypersensitive or hypo-sensitive to certain sensations, including food. For example, if your mouth is hypersensitive, you may only be able to stand bland or soft food, while if you experience mouth-sensations that are dulled (hypo-sensitive) you may crave very strong-tasting or crunchy foods to give 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 individuals 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.
I personally prefer to see this as communication. 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. 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.
Those of us with ASC will recognise that when you're anxious, your body responds. Anxiety triggers emotional and psychological changes in your body to help you deal with the pressure. These changes often affect the stomach and digestive tract and can make you lose your appetite. If stress is the reason, your hunger usually returns once you're feeling more relaxed.
As we said at the beginning of this section, issues around food are highly emotive. As the parent/carer of a loved one we want to see them happy and enjoying their food. The cause of the food issues will determine the best cause of action and approach as it needs to be individually tailored.
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.
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 snack times. 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!)
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.
Adult eating disorder service: https://www.nhft.nhs.uk/eating-disorders
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