Picky eating or ARFID ?

 

Something that has always worried me has been in the news recently so I thought I’d share my thoughts a little. Not only to spread some awareness of this particular disorder but also in the hope that by putting it into words it might help me to stop thinking about the awful story. 

A little boy, of similar age to Little C, died recently after his heart stopped suddenly. The little boy was autistic and had ARFID (Avoidant Restrictive Food Intake Disorder). It is thought that the boys heart could no longer sustain his body’s requirements. The professionals involved didn’t acknowledge the boys lack of food intake and he was just referred to as being a ‘picky eater’. The story is heartbreaking. His mum could see he was losing weight and was barely eating at school but no help was offered despite her raising concerns about his food intake and weight loss. 

I think this article will cause concern to many parents who have autistic children. Little C is most definitely a picky eater. But when does picky eating become ARFID?

Most autistic children and adults are selective eaters and tend to prefer ‘safe foods’ or ‘same foods’. I see safe/same foods as being a food that never changes i.e. every blueberry feels and tastes different = not safe. Every cheerio feels and tastes exactly the same = safe. So there no surprises or unexpected strange textures or flavours - hence why lots of safe foods are unfortunately processed food items.

Little C was under a dietician a few years ago where we did food diaries and received well-meaning but very obvious advice on healthy calories. He still likes his ‘safe foods’ but he now eats and tries a wide range of other foods. His daily safe items are a boiled egg - every day - then a sandwich for lunch (at the moment he prefers brown bread -win!) and super noodles as his 3pm snack. 

He snacks pretty much non stop throughout the day on various things, some healthy, some not so healthy, and he has too many ice lollies! Of course I’d love Little C to be snacking on fruit and eating more vegetables and bigger portion sizes but compared to a few years ago it’s an improvement. 

Some people may be thinking ‘cut out all the snacks and he will eat a decent sized meal’. Oh how I wish it was that easy. Firstly lots of autistic children need snacks for various reasons including to regulate and for sensory input e.g. cold, crunchy things to munch on (like ice lollies!). For us though it got to the point where we just needed to get food in him somehow.

Things were complicated by PDA. Little C found mealtimes very difficult because the ‘eating’ process was not in his control and this caused him to panic. This in turn meant he ate very little and mealtimes were a nightmare. From what we now know about PDA, Little C probably found mealtimes pretty traumatic. 

So we moved away from this ‘set’ meals to allow him to eat what he wants and when he wants. Little C now enjoys food and usually chooses to join us at the table when we sit to eat at tea time. He eats lots of different foods and fell back into a natural pattern of set meals, albeit slightly out of whack to the norm - but hey, who says you can’t have a cheese sandwich at 10am?!

On top of all that though, it could take just one choking incident for Little C to develop a fear of food and stop eating. Similar things have happened in so many areas in the past so it’s a very real possibility. It makes everything else feel quite unimportant to be honest. Like, education, toileting, car refusal - non of that is life threatening, but if Little C refused to eat, what then? I try not to think about it. 

Despite the improvements in his diet and relationship with food, Little C is still underweight. He’s not even on the chart for weight. There is no line under the 0.4 centile line. He is small in stature too and is on the 2nd centile line. His feet and clothing are the size for a 5-6 year old. A recent bone X-ray aged his bone at 6 years also. He still has all but two baby teeth. So it appears he’s still not growing very well. 

We are now waiting for an appointment with a specialist to look at whether his poor growth is related to a hormone deficiency, genetics, or whether it is due to poor nutrition, or possibly even ARFID.

The stress never ends! And as for school ….well, that’s a whole new post for a different day! 

We did had a fabulous Christmas though! Hope you all did too.