Food has always been a big issue for our eldest son on the spectrum. The severity fluctuates and, while predominantly a sensory issue, is impacted by anxiety too.
Over the last year, but particularly the last three months, C's anxiety has been crazily intense and is showing no signs of backing down. While we are working toward fixing this issue separately, his food list has reduced to around 5 foods. Ten at a push. Most of which are carbs.
As a teenager with a restricted diet, C is demonstrating a lot of behaviours which I believe are made worse by poor nutrition and constant hunger. Aggressions, destruction, angst, fatigue, dry skin, pale and drawn face, toileting problems...
I keep being told: "He won't starve."
Well, actually, he would. And weight drops off him when he stops eating. While strong with most other areas of life and expectations, when it comes to food I feel I have no choice and end up giving in first. No, I didn't want him to eat cereal for his dinner but after the sixth plate being launched across the kitchen or from the dining table, if we managed to get that far, the failed negotiations, the destructive behaviour, the self-harm, the screaming, shouting, swearing, soiling, refusal to do anything and go anywhere because he's just so hungry - on top of being a nervous wreck over other things - I give in. Yep I do. I give in and I let him eat cereal and I make sure it's not too sugary and comes with extra milk... because I am still trying but I know my limits and I know his.
But I also recognise that he could, potentially, construe my concession to mean that his behaviours are working to get his desired end result.
But I also recognise that his behaviours are a communication and I do not believe they are 'to get his own way'. It's not like he does it because he wants the cereal, it's because he can't bring himself to eat the other things. It terrifies him.
So yes, he would rather starve.
And yes, I would rather he eat something than nothing.
And yes, both of us would like to avoid reaching these awful moments.
"Have you tried food therapy?"
Here, food therapy for kids on the spectrum generally isn't accessible. Seeing an OT would be the way in and sadly, unless there are significant motor problems, a child on the spectrum will unlikely be referred to occupational therapy. At least that is/was the situation in our health district.
His school do have training and did try to implement a food therapy program with C. It didn't go well.
"Why didn't it work?"
Here, food therapy consists of: look at it, touch it, sniff it, kiss it, bite it, chew it, eat it. And that's pretty much it.
C went through this process for years with school. Every time he would get so far as biting a new food - and dislike it - it would trigger a reaction where he could not stomach anything remotely similar. The end result being that the overall food list actually reduced.
For example, bacon... he doesn't eat bacon. Asked to progress through the stages with school to where he bites it and doesn't like it, resulted in C refusing all meat point blank. He's not eaten real meat in years now. At first, he would still it very processed meats such as sausage, packet chicken - the stuff that doesn't resemble meat - but when he was asked to go through the gradual process again he dropped those last few items. Including chicken nuggets from McDonalds.
And in addition, when C was doing food therapy on a school day, he would come home and completely refuse to eat anything at all. Prior to starting it he did have a restricted diet, definitely, but it included items from all the food groups. While monotonous, we could live with that. After the aversions and what can only be described as phobias came along, we ended up with a very imbalanced diet as well as being extremely restricted.
"So, what will he eat at the moment?"
As mentioned, with C, his food challenges - in fact all sensory challenges - are impacted by anxiety. Teenage years are hard. Puberty is hard. As well as the physical side of things, the emotional angle is intense. C is struggling, more than he's ever struggled, with anxiety. So is his diet.
We are now at the stage where he will willingly eat six yellow foods and two orange. He will also eat chocolate spread, chocolate in general, most cereals and crisps. I don't count those as they are not part of a meal. He will still eat an apple though too, that's my proud point.
"Sounds like a vicious cycle."
Yes it is. And while food therapy should work better than it has, and potentially could do with the right background and when done properly - it didn't.
Trying to get back into food therapy with a child who is literally hungry all the time, has such severe phobias and is on edge all of the time... not the best foundation, right?
And so we haven't even tried anything for a long time now.
We felt we needed to remove the pressures around food completely and, much like toilet training a child with autism, wait for cues that they're ready again.
"Does he understand the importance of a healthy diet?"
On most occasions tell you which foods are healthy and not healthy from a list. He doesn't know about carbs, protein, fats. He does know sugars.
Prior to the last few weeks, when I have been really hammering it in, I do not think he understood why it matters either. Especially now he's a teen.
He is starting to recognise the importance though. And that is our cue.
As we are currently in the midst of the greatest food battle of our lives with the biggest guy, we decided we'd share what we are using, doing and trying; And some things that maybe don't suit us but could help you.
As well as providing a really fun way to engage with your child, sensory activities are beneficial to all children... but especially to kids on the spectrum, with sensory processing disorder/dysfunction and other special needs.
Here we share lots of fun ways to challenge sensorial boundaries and satiate intense sensory demands.