Helping my child to enjoy food

I have 4 boys, 2 of whom are on the autism spectrum. These boys are as different as can be. One is 7 and the other 14. They are the living embodiment of the quote

If you’ve met one child with autism, then you have met one child with autism.

One of the biggest differences with them is their diet.

My eldest child with autism is our first born. When you are a new parent no matter the advice you receive  or the research you do, it’s all new.

When our boy was a baby, we knew something wasn’t right, but we didn’t know what. When I look back now with years of experience of being a parent of a child on the autism spectrum, I now know the red flags for autism. He certainly had a lot of issues, but until he was nearly three, his diet was not one of them.

He was an excellent eater and then in what felt like overnight, but which was in reality a gradual process, he developed what I call the ‘bland diet’ .

He would only eat foods which I can only describe as having no colour, texture or smell.

My other boy who is 7 never had that issue and eats pretty much what we put in front of him regardless of the smell, texture or colour.

Professionals have explained this to us and informed us that people with autism have a complicated relationship when it comes to food. While many families with autistic children will struggle to get someone on the spectrum to eat (due to a diet consisting of solitary or limited food groups), many others will have their hands full, trying to stop their child from constantly having their mouth full.

My wife and I can certainly identify with that, as for the last ten years it’s been a constant struggle to get our oldest boy to eat. With all the worries that accompany that fight, such as fears for his health and his tendency to succumb to minor infections, which escalate and have included hospital stays.

With advice from dietitians, we tried every trick we could think of and borrow to encourage him to eat. At this stage it was just our desire for him to eat nothing else. 

While he did eat certain foods, we worried about the nutritional value of what he did consume, which remained as a bland diet.

In desperation, we added supplements to his juice, but he could smell them and refused to drink it. 

We tried to give him vitamins disguised as sweets but he always sniffed them out.

Finally, we thought we needed to seek a diagnosis to what was stopping him from eating. We wanted to know was this a major part of his autism or something new?

After the usual pinball experience being shunted from one medical professional to another, we finally had our boy diagnosed with 'Avoidant Restrictive Food Intake Disorder' (ARFID).

More commonly known as ARFID, this is a condition characterised by the person avoiding certain foods or types of food, having restricted intake in terms of overall amount eaten, or both.

We were told by our Consultant that ARFID and autism are commonly observed together. This is because people on the autism spectrum demonstrate a much greater chance of suffering from one or more eating conditions, including ARFID, anorexia nervosa and bulimia.

Someone might be avoiding and/or restricting their intake for a number of different reasons. The most common are the following:

• They might be overly sensitive to the taste, texture, smell, or appearance of certain types of food, or only able to eat foods at a certain temperature. This can lead to sensory-based avoidance or restriction of intake.
• They may have had a distressing experience with food, such as choking or vomiting, or experiencing significant abdominal pain. This can cause the person to develop feelings of fear and anxiety around food or eating, and lead to them to avoiding certain foods or textures. Some people may experience more general worries about the consequences of eating that they find hard to put into words and restrict their intake to what they regard as ‘safe’ foods. Significant levels of fear or worry can lead to avoidance based on concern about the consequences of eating.
•  In some cases, the person may not recognise that they are hungry in the way that others would, or they may generally have a poor appetite. For them, eating might seem a chore and not something that is enjoyed, resulting in them struggling to eat enough. Such people may have restricted intake because of low interest in eating.

It’s a long process but we are taking simple steps.  For example, we have to make sure that his food is prepared the way he wants it, as even using the wrong type of butter can make the most appealing sandwich destined for the bin. Some would say fussy, but we have to appreciate that his sensory experience is far more sensitive than ours.

Trying to vary his diet is a struggle, but we try and ensure that he experiments with new foods. It’s a negotiation process sometimes nudging and often encouraging and even on occasions bribing ( hey I’ll do whatever works).  It’s a slow process but he is gradually expanding his diet.

The 3^rd point is the most worrying for me as my child grows. He genuinely gets so wrapped up in the activities and experiences of what he is doing, that he forgets to eat. His emotions are in so much flux that he does not recognise he is hungry. It’s a mission for us to establish a meal routine and to encourage him to prepare his own food. This establishes a relationship with food and a routine of making meals can be built into his day which will benefit and prepare him for the future.

We have to help him enjoy food and develop a desire to cook and eat what he makes. A slow process, but with the help of a weekly online cooking zoom call from his local youth organisation he is really enjoying cooking new things as are his siblings, who all want to be part of his zoom.

We have never eaten so many cup-cakes, but my personal favourite is his cheesecake.

So, we have used a variety of tactics to help our child enjoy food.

I have given up trying to make him eat as that just does not work. We have taken a step back and tried to understand the sensory and emotional issues behind his food issues and worked on strategies to sort these. This is in contrast to the past, where we fought and fought to get him to eat out of sheer worry that his health would decline.

It’s a long road but we hope and pray we have turned the corner with our eldest child, as for his younger brother, well we hope he keeps on eating. and that they both enjoy a positive relationship with food. 

I’d like to share this with you which is a list of the flags to look out for ARFID.

ARFID includes a range of different types of difficulty that contribute to the avoidance or restriction of food intake, there is a wide range of possible signs and symptoms, not all of which would necessarily occur in one person. Possible signs of ARFID include:

• Eating a reasonable range of foods but overall having much less food than is needed to stay healthy.
• Finding it difficult to recognise when hungry.
• Feeling full after only a few mouthfuls and struggling to eat more.
• Taking a long time over mealtimes/finding eating a ‘chore’.
• Missing meals completely, especially when busy with something else.
• Sensitivity to aspects of some foods, such as the texture, smell, or temperature.
• Appearing to be a “picky eater”.
• Always having the same meals.
• Always eating something different to everyone else.
• Only eating food of a similar colour (e.g., beige).
• Attempting to avoid social events where food would be present.
• Being very anxious at mealtimes, chewing food very carefully, taking small sips and bites, etc.
• Weight loss (or in children, not gaining weight as expected).
• Developing nutritional deficiencies, such as anaemia through not having enough iron in the diet.
• Needing to take supplements to make sure nutritional and energy needs are met.

If you think your child may have  ARFID, you should make an appointment to discuss this with your Doctor. If you are concerned that a family member or friend has ARFID, it is important to talk with them to support and encourage them to seek the right help and support. It is usually best that this help and support is in place as soon as possible after the difficulties have been recognised.

Stay well and safe everyone and please pass this blog onto anyone you feel could benefit from it.