DDX3X
Advice, resources and practical strategies for parents and carers of children and young people with DDX3X

EATING
Food and nutrition are vital because they provide the energy we need, support growth and development, help maintain well-being. Some children are picky eaters and other children have more serious challenges with eating and may have a condition called ARFID. Other children eat non-food items due to a condition called Pica. All of these will be explained below including some strategies to try.
Sensory related eating difficulties
When children have difficulties with eating it can be due to taste but more often than not, it is in fact a difficulty with the tactile system. If your child dislikes strong flavours they are likely over responsive to taste and if they have difficulty telling the difference between flavours they are likely under responsive. If however, they struggle with different textures it is probably a tactile processing difficulty. Foods like spaghetti bolognaise that include a mixture of textures in the same mouthful can be particularly challenging for children with tactile processing difficulties.
Eating difficulties are not always sensory related. Food Neophobia is a fear of new or unfamiliar foods and is relatively common in children up until the age of 6. Children with autism can experience this difficulty longer term. It can be sensory related in that the fear of trying something new may stem from the uncertainty of how it will taste or feel in the mouth.
ARFID
ARFID stands for Avoidant Restrictive Food Intake Disorder. It is a complex eating disorder characterised by limited food choices and avoidance or restriction of certain foods, textures, smells, or colours. Unlike other eating disorders like anorexia or bulimia, AFRID is not driven by concerns about body weight or body image. A child with AFRID will not be eating an adequate amount of food whereas a child with 'picky eating' will be limited to certain foods but will usually enjoy eating their favoured foods and will be getting enough nutrition (or have a minor dietary imbalance). Children with AFRID experience much more emotional and psychological distress than children with 'picky eating' difficulties.
If you feel your child might have ARFID, then proper help from a multi-disciplinary team is required.
If you'd like to find out more information about ARFID, see: ARFID Awareness UK
You can also read Hanna's newsletters:
Gradual introduction
A tip from Sensory Health is to involve your child in the cooking or preparation process, as it allows them to look at, smell and touch the food, without the pressure and stress that a meal can sometimes bring when everyone expects them to eat all the foods present. This can help desensitise tactile sensitivities.
Gradually introduce new foods, textures, and tastes in a low demand, supportive environment. See the steps to eating section below and start small e.g. tolerating being in the same room as the new food on a regular basis. It can often be helpful to pick just one new food to introduce and stick with the same food consistently for a number of months. The next food to try after that would be a food that is similar in taste, texture and appearance (this is called food chaining).
Steps to Eating
It can be helpful to have an understanding of the steps that lead up to a child eating a new food:
- Tolerates - starting with being in the same room as the food working up to looking at the food when it is nearby.
- Interacts - for example helping with preparing or dishing out the food.
- Smells - starting with managing the smell at a distance in the room and working up to managing the smell of the food directly in front of them.
- Touch - starting with just a fingertip, working towards the outside of the face and finally the tongue.
- Taste - starting with tasting just on the lips, then a tongue lick and working towards chewing the food.
- Eating - this stage cannot be rushed and the child needs to have worked their way gradually through all the other stages.
Environment
This NHS resource provides information on eating problems children with developmental difficulties who avoid or refuse food.
Strategies:
- Low stimuli environment - to avoid sensory overload which can result in an avoidance of foods due to the overwhelming sensory input. This may involve dimming lights, moving pets into another room, or turning off the TV.
- Seating - correct seating (with feet flat on the floor and a good table height) helps the child maintain an upright and stable posture during meals, which can improve their ability to focus on eating. Having said that, for children that have a need to be on the move and struggle to sit still, it can be helpful to start by allowing them to eat where ever they are comfortable and work towards sitting at the table in the future.
Pica
Pica is a medical term for when children eat non-edible items. Common items that children with pica eat can include sand, chalk, playdough, clothing, faeces, hair and paper. Pica is not diagnosed below the age of 2, as children below the age of 18 months explore objects by mouthing and sometimes swallowing.
If a child is eating non-food items, they may be seeking sensory stimulation. Some strategies to help with this include:
• Teaching your child how to identify food from non-food items.
• A snack routine; try making a snack available on a set schedule, such as every 30 minutes or 1 hour.
• Try teaching your child to pick up pica items and throw them away or return them to their place.
• Alternatives such as an appropriate vibrating toy, crunchy foods, or a vibrating toothbrush, can provide your child with the sensation they are seeking.
Info from the NHS: Pica (eating non-edible items)
You can also read Hanna's newsletter on Pica here
Other strategies and interventions
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Having fun with food: Alisha from 8 Secret Strategies for Sensory Issues with Food shows some fun strategies to help engage your child in eating, such as food play, and also explains the difference between sensory food aversion, sensory food disorder, and restrictive food intake disorder.
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How to Respond: Laura from It’s Not ‘Picky Eating’: 5 Strategies for Sensory Food Sensitivities says that if your child unexpectedly takes a bite of something that they normally wouldn’t eat, keep calm on the outside, don’t express huge amounts of excitement as you don’t want them to shrink under the pressure of trying the food.
- Food separation plates: This is an example Divided Dinner Plates. These can be helpful for children who are worried about their food touching. They can also be used to put the child's favourite food on the main section and then put a very small amount of a new food in the small section and reassure them they don't need to eat it but it's there for them to get used to.
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First Step Nutrition: This is an independent public health nutrition charity that aims to fill practical and policy-relevant information gaps and provide resources for health workers supporting eating well from pre-conception to five years.
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Feeding Matters: This is the first organization in the world uniting families, healthcare professionals, and the broader community to improve the system of care for children with pediatric feeding disorder through advocacy, education, support, and research.
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Hanna's newsletter on picky eating strategies: Picky eating strategies
If you feel you need support from an experienced professional, you might like to consider the following:
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SOS approach: SOS Approach to Feeding | Feeding Disorders in Children
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Consult with specialists - you may need the GP or Paediatrician to refer you to a dietician or speech therapist (if your child has swallowing difficulties) if the difficulties are severe and your child in undernourished.