As a parent or caregiver, seeing your child struggle with feeding and also understanding paediatric feeding disorders can be incredibly distressing. When a child has limited food intake or refuses to eat, it can feel like you’re constantly navigating uncharted waters. For many children with autism, feeding challenges can be even more complex due to sensory sensitivities, medical issues, and behavioural factors.

If your child has started to refuse certain foods, has a very limited diet, or has even experienced significant weight loss due to their eating difficulties, it’s possible they may be dealing with a paediatric feeding disorder (PFD).

What is a Paediatric Feeding Disorder?

Paediatric feeding disorders (PFDs) are conditions where a child has trouble eating or drinking in a typical way. These disorders can range from mild picky eating to more severe difficulties like avoiding food altogether or only eating a limited range of foods. For some children, eating may be physically painful, which can lead to negative associations with mealtimes and food itself.

For children with autism, the situation can become even more complex. Many children with autism experience heightened sensory sensitivities, which can make certain textures, smells, or even the appearance of food overwhelming. Combine this with past negative experiences—like vomiting or gagging—and you may have a child who begins to avoid food altogether, leading to serious health concerns.

My Son’s Story: Struggling with Feeding

My son, Toby, who is autistic, has struggled with feeding for most of his life. He used to eat well as a baby, but before he turned two years old, something changed. One day, he started gagging on his food and throwing up, which led to a complete breakdown in his eating habits. Over time, the problem only got worse. He began refusing to eat altogether and would go for weeks or even months at a time without food.

At his worst, he was close to needing a feeding tube. For several months, his only source of nourishment was milk, and his weight began to drop alarmingly. This sudden shift in his eating habits was not just distressing for him but for our whole family. It felt like we were at a loss, unsure of how to help him get the nutrition he desperately needed.

Today, Toby has a very limited diet. He typically eats a handful of foods, such as Jammie Dodgers, baby apple rice cakes, scotch pancakes, cheese and onion crisps, cheese strings, Birds Eye chicken dippers, and alphabet chips. But even these “safe” foods aren’t guaranteed. There are days when he won’t eat any of them, and we are back to square one. On good days, we can get him to eat a little bit of something, but it’s a constant battle.

The Turning Point: Guidance from The Feeding Trust

It wasn’t until we connected with The Feeding Trust that we truly started to understand the depth of Toby’s feeding difficulties. Through their expert guidance, we began to see that Toby’s eating issues were much more aligned with a paediatric feeding disorder (PFD) than what we had originally thought.

Before this, our dietitian had suggested that Toby’s feeding issues might be linked to ARFID (Avoidant/Restrictive Food Intake Disorder). In fact, the dietitian mentioned that if there were an ARFID department in our area, Toby might have been diagnosed with ARFID based on his behaviours. However, after speaking with professionals at The Feeding Trust, we realised that PFD was a more likely diagnosis, considering the combination of his sensory sensitivities, past experiences with vomiting, and the gradual avoidance of food.

The Feeding Trust helped us understand that feeding difficulties in children with autism often stem from a range of factors, including sensory processing issues, medical concerns, and sometimes a fear or aversion to certain foods. In Toby’s case, his past struggles with vomiting and a very limited food range led us to believe that PFD could be the more accurate diagnosis.

Having this clarity was a huge relief for us as parents. It helped us focus on the right interventions and therapies, knowing we were addressing the root cause of Toby’s feeding issues rather than just focusing on the symptoms.

The Feeding Trust not only helped guide us but also provided us with resources and advice on how to approach Toby’s feeding difficulties in a structured and effective way.

The Link Between Autism and Paediatric Feeding Disorders

Many children with autism experience a variety of sensory processing issues. They might be hypersensitive to certain textures, tastes, or smells of food, which can make eating a stressful experience. It’s also common for children with autism to develop strong food preferences or aversions, which can lead to a limited diet. Some children may also have an overactive gag reflex, which further complicates eating.

Toby’s feeding difficulties likely began as a result of a combination of these factors, compounded by a history of colic as an infant. He had severe colic and would frequently throw up dark brown sick until he was seven months old, which may have contributed to his aversion to food and vomiting as he got older. As a baby, he ate Ella’s Kitchen meals and some home-cooked meals, but once he hit the two-year mark, he stopped eating meals altogether, and we’ve been struggling ever since.

Understanding the Causes of Feeding Difficulties

There are several potential causes of paediatric feeding disorders in children, especially those with autism:

1. Sensory Sensitivities: Children with autism often have heightened or diminished sensitivity to sensory stimuli. The texture, taste, or smell of certain foods might be overwhelming or unpleasant for them, making mealtimes a stressful experience.
2. Medical Issues: Conditions like reflux, food allergies, or gastrointestinal problems can make eating painful or uncomfortable, leading to a child refusing food to avoid discomfort.
3. Behavioural and Psychological Factors: Some children develop negative associations with food due to past trauma (like vomiting or choking) or simply because eating has become a battleground in the home.
4. Limited Food Preferences: Many children with autism have a narrow range of foods they will accept, which often leads to a restricted diet. Over time, they may stop eating even the foods they once enjoyed, as seen in Toby’s case.
5. Developmental Delays: Children with autism may also experience delays in oral-motor skills, making it difficult for them to chew or swallow certain textures of food.

How to Help Your Child with Paediatric Feeding Disorder

While every child’s feeding difficulties are unique, there are strategies that may help improve eating habits and ensure your child gets the nutrition they need:

1. Work with Healthcare Professionals: A multidisciplinary team—including paediatrician’s, speech therapists, occupational therapists, and dietitian—can help assess and develop a treatment plan. They can work with you to address underlying medical or sensory issues and offer feeding therapy.
2. Create a Calm, Positive Mealtime Environment: Mealtimes should be relaxed and stress-free. Avoid pressuring your child to eat. Instead, try to make eating a positive, low-pressure experience where they feel safe and in control.
3. Gradually Introduce New Foods: If your child has a limited diet, it may take time for them to accept new foods. Start by offering new foods alongside their safe foods in a non-threatening way. Introduce small tastes and avoid overwhelming them.
4. Focus on Safe Foods: In the early stages, it’s important to maintain your child’s caloric and nutritional intake, even if it means focusing on their “safe” foods. If your child has a limited food selection, work with a dietitian to make sure they’re getting a balanced diet.
5. Use Feeding Therapy: Specialised feeding therapy, which often involves a combination of speech therapy and occupational therapy, can help children with feeding disorders gradually overcome their difficulties. These therapies may focus on improving chewing and swallowing skills, addressing sensory sensitivities, and reducing food aversions.
6. Monitor Growth and Weight: It’s essential to keep an eye on your child’s growth and weight to ensure they are receiving adequate nutrition. If weight loss or poor growth is a concern, discuss alternative feeding options with your healthcare team.
7. Be Patient and Persistent: Overcoming feeding challenges takes time, and there may be setbacks along the way. Celebrate small victories and be patient with your child’s progress.

When to Seek Help

If your child’s feeding issues are significantly affecting their health, development, or quality of life, it’s crucial to seek professional help. Paediatric feeding disorders can lead to malnutrition, weight loss, and even failure to thrive if not addressed early. A feeding team can assess your child’s needs and help create a tailored plan for intervention.

An Overview Of Paediatric Feeding Disorders in Children

Feeding disorders in children with autism can be incredibly challenging for both parents and caregivers. But remember, you are not alone. Many families go through similar struggles, and help is available. By seeking support, understanding your child’s needs, and working with professionals like The Feeding Trust, you can help your child improve their relationship with food and ensure they get the nutrition they need for healthy growth and development.

If your child has feeding challenges, please don’t hesitate to reach out for professional help. Early intervention can make all the difference.