Autism and Diet
Autistic kids and diet problems
When we think about diet problems, utmost in our minds is probably severe allergies such as to peanuts, as well as serious eating disorders such as anorexia or bulimia. Next is likely to be the ongoing national and international concern about childhood obesity and the associated issues with that.
Whilst autistic people may suffer from these conditions, notably due to anxiety (anorexia, bulimia) or refusal to eat certain foods (leading to obesity), the general problem is the consumption of what would be considered a ‘poor’ diet. That is, one lacking in enough variety to provide the balance of macronutrients (carbohydrates, protein, fat) and vitamins and minerals needed for physical health and growth.
What are the causes of diet problems for autistic people?
There are 2 main causes:
- Cognitive rigidity
- Sensory issues
Cognitive rigidity describes the inflexibility in thought and routine exhibited by some autistic people. The fact that autistic people think in terms of visual images means that they predict the near-future based on what they are likely to see. Our mental imagery is mostly based around what we have seen before, therefore if some deviation from that imagery happens, this is unfamiliar to the autistic child and may cause anxiety. Autistic people seem particularly affected by changes in routine, whether that is travelling to school via a different route due to roadworks, having to go to a different classroom because the teacher is off sick, or wearing new clothes. So this inflexibility extends to the diet: anything new foods are viewed with anxiety. This was not part of what the autistic child pictured eating, so trying it heightens anxiety. Attempts by well-intentioned parents to broaden the dietary experience of their child is met by resistance of varying degrees. This may be expressed anywhere between verbal complaint to even physical outbursts or violence, especially in non-verbal children.
The cognitive rigidity and sensory issues relating to food overlap. Food which is new or unfamiliar is likely to look different, but also smell, even sound, feel and, yes obviously, taste different. Most of us do not think about food too much beyond 2 senses: smell and taste. It is probably a survival instinct as our evolution has allowed us to quickly determine by smell and taste if food might poison us or make us sick. With ASD people processing sensory information differently, they are generally more sensitive to the smell and taste of different foods than neurotypicals. Add to that the more pronounced visual impact of food, plus the heightened awareness of texture and even the sound of food (eg crunchy coatings on chicken nuggets) and you suddenly have a 5-sense onslaught of information every time you are presented with a new food. Combine this sensory overwhelm with the cognitive rigidity already discussed and you have a major challenge in trying to introduce any few foodstuffs into the diet of an autistic person.
Nick has had problems with his diet. The usual combination of cognitive rigidity and sensory overwhelm made his diet resemble the colour of sand most mealtimes: Cheerios or Weetabix for breakfast, chicken nuggets and chips or potato waffles. Toast for supper or as a snack. No veggies beyond baked beans and (thank goodness) peas. Tomato sauce with everything.
Unfortunately for some reason autistic children tend to have digestive problems. Whether it is a body chemistry problem specific to autism or whether it is a symptom of an imbalanced diet remains unclear, but we found that between the ages of about 3 and 4 years that Nick started to suffer from terrible constipation. As in, he wouldn’t poo for a week. So after 3 or 4 days of no pooing, his stomach would start to hurt and he would be in pain for the next several days and nights. Yes, nights too. So he didn’t sleep. So we didn’t sleep. His groaning with pain throughout the night meant that we as parents were going with very little sleep, along the lines of parents of newborns. It was unsustainable and incompatible with normal life: getting the kids up for school, going to work, driving a car……all very tricky if you are severely sleep deprived for 3 or 4 nights out of every 7. Indefinitely.
We went to see GP about it, in fact several GPs. The first doctor was sympathetic yet reluctant to prescribe any kind of laxative, as she warned that it was very easy to over-medicate constipation and end up with….. Well, the opposite problem. Which is exactly what happened. So we reduced the dose of lactulose to reduce the softening effect and we immediately ended up back in Constipation-Land, our least favourite location, complete with lack of sleep for Nick and everybody else.
We were talking about this with friends, parents of another autistic boy we had met through a support group. The mum asked if we had tried a gluten-free or casein-free diet. Gill had read about it but I had no idea. The mum explained that many autistic kids, for as yet scientifically unexplained reasons, have an intolerance to gluten in food and casein in cow’s milk. Either of these different proteins can cause digestive problems including constipation, although statistically speaking it is not a common condition. The mum continued that her and her husband had tried their son on casein-free milk and it worked wonders for his tummy problems. Some online research indicated that a small study (64 subjects) carried out by Lau et al in 2013 indicated a high prevalence of gluten resistant antibodies in autistic children. An antibody is created by the autoimmune system to fight substances which the body perceives to be harmful; this would imply that the antibodies make it difficult for the digestive tract to absorb gluten, hence the digestive irritation, although this is not specifically explained. Regardless of the scientific robustness of the research, it indicated that the problem was fairly common in autistic children. We therefore decided that there was nothing to lose so we decided to try Nick on a gluten free diet to see if it helped at all. If there was no change, we could look at casein-free approach separately.
After a bit more research and list-making, we realised just how many foods contain gluten. It is a naturally-occurring protein in wheat and barley, but it is so good at binding food together and improving the food’s texture and stability that it is used in a vast range of everyday foods.
The NHS website contains lists of gluten-containing foods:
- biscuits or crackers
- cakes and pastries
- gravies and sauces
The problem for us was that when you consider Nick’s ‘sand-coloured’ diet, gluten was in almost everything he ate; breakfast cereal, toast, sausages, sausage rolls, pies, pasta, chicken nuggets, fish portions (breaded), plus any sauces that we could get him to eat. So we had to stock up the cupboards, fridge and freezer with these as GF options. The first thing we noticed was that GF food is way more expensive than regular food. I suspect the combination of making it in small batches, limiting the scope for economies of scale and reduced unit costs, combined with a desire by producers to maximise profitability on a highly-differentiated product range, means that it is inevitable that it would be more expensive. But be forewarned, a small loaf of bread that might cost anywhere between 50p and £1.00 depending on which supermarket you buy it in, will sell for between £1.80 and about £3.00 for a comparable GF version. It gets expensive very quickly once you apply this price differential to all foods which your child eats, even it they mostly are sand-coloured.
Nick has no idea what goat’s milk tastes like because we never got to it. The impact of removing gluten from his diet was so fast that we did not feel the need to change anything else. Within 72 hours from the removal of gluten-containing food from his diet, his toileting returned to normal and he slept better. Not perfect, but better. So our sleep patterns improved and life was much more manageable. We were shocked at how effective this was and how quickly the changes had occurred.
We reported back to the friend who had suggested gluten-free / casein-free diet as an option. She suggested that we ask our GP for a prescription for some of Nick’s gluten-free food, so at least some of the cost would be covered. The first doctor we saw was less than supportive. As Gill explained the digestive and sleeping problems Nick had been experiencing and how we tried GF as an experiment, he literally rolled his eyes at her and said that he was aware that these sort of diets were becoming “very popular” of late but that unless a patient had coeliac disease, he would not support a prescription for GF food.
A later visit to the GP (a different doctor who was covering for her absent colleague) about diet-related issues led to an initial prescription for GF bread and GF flour, which have reduced our GF food bill somewhat.
7 Solutions to diet problems in autistic people
- Food diary
A food diary can help to clarify what the problem is and therefore help with possible solutions. What food was eaten? When? How much? Who else was present? How did other people present react? Any other details (eg a certain tv show on in the background). Because of the sensory nature of autistic people, the problem may be circumstantial rather than food-related. For example, a child may hate bananas based on an experience of seeing a very messy eater eat a banana in a gross way, rather than the way the banana smells, tastes or feels.
Avoiding unwelcome surprises is important in most activities for autistic children, so steps like posting a weekly meal planner on the kitchen noticeboard can help to reduce anxiety about foods. For the child whose diet is too narrow, a food chart showing the foods we need to eat and why they help our physical well-being may help reduce resistance. Social stories about a favourite actor or musician or TV presenter and why they would need to have a healthy diet may also help.
It may well be worth bribing a child to eat a new fruit or vegetable in exchange for a favourite toy or even chocolate bar. Once the child has tried the new food and has had a positive experience, the food can quickly become part of the evolving menu without much resistance in future and avoid the need for ongoing rewards.
If a child mostly takes part in sedentary activities such as reading, watching TV, playing video games, he or she may not generate enough of an appetite to warrant a sense of ‘needing’ food. This makes introducing new foods very difficult. Walking the family dog, walking to the library, playing frisbee or learning to ride a bike can all not only release tension and anxiety, but also help burn calories and generate a greater desire to eat.
If your child is in a therapy programme, it may be worthwhile trying to use some of the therapist’s skills to overcome a phobia of certain foods. Our son Nick had such a phobia about yoghurts (the sight and the texture; he didn’t need to taste it to projectile vomit!) that we got his therapist to use ‘exposure therapy’ to desensitise him to the substance. She started with just having the unopened yoghurt pot in the same room, while she and Nick played a board game. Next session, she moved the yoghurt (still unopened) a bit closer. The next session, she peeled the lid off and set the yoghurt on the table. After that, she ate some of the yoghurt in front of him. All with a fair degree of trepidation, but no vomiting!
Sometimes, minor anxiety about certain foods can be overcome just by seeing another family member eating the food and enjoying it.
- Addressing sensory issues
Again, the food diary idea may help: what exactly is the problem? Neurotypical people think about foods in terms of sight and smell, but an autistic person may dislike the texture of a food or even the sound of it (such as the crunch of carrots)! Getting specific about what the problem is rather than what seems obvious can help lead to a simple solution, such as preparing the food in a different way, cooking it for longer, or trying a different brand with a slightly different texture or taste.
Who can help?
The GP is probably the first port of call for dietary problems; the doctor may refer you to a dietician if specialist assessment or guidance is needed. In some cases where concern about sugar intake is paramount, the dentist may be able to offer help. In the most extreme of cases, a referral to a child psychiatrist may be appropriate.