Sometimes my wife, two children and I like to play a little game when we’re out. It’s called ‘Let’s pretend we’re a normal family.’ When playing, we relax the rules that normally govern our lives and keep things running smoothly, like avoiding certain public places. During a recent gung-ho game, we decided to eat in a restaurant. Not a fast food joint but a proper, table service, decent food kind of restaurant. Somewhere classy. We ended up in ‘Frankie and Benny’s’.
Okay, it’s no Michelin star winning eaterie. We may have been gung-ho, but we weren’t stupid. And actually, I won’t have a word said against the place, particularly not our local branch after they smiled their way through a monstrous performance from our autistic son. “Your belly is massive!” he shouted across to our waiter, who he had decided was Frankie. This was funny the first few hundred times, but less so afterwards, especially as B started to demand he get to see Benny. ” Is Benny fat too?” he asked, as we crawled underneath the table. The wait for the food was not unreasonable by any standards, except perhaps my sons. Expecting him to sit and wait was a big ask. He quickly bored of those crayons with multi-coloured nibs (which kept rolling off the table, prompting screaming demands to find them) and after he’d upturned the salt and pepper pots, he decided to try to escape.
We penned him in and compromised on letting him stand on his seat and check out his surroundings. If you were one of the two girls in the next booth trying to enjoy a quiet meal, I’m so sorry that my son kept bothering you, talking to you, touching you. He’s cute though, isn’t he? Gets away with murder. When our food arrived, we had a little race. The race was to be finished before B had decided he had eaten enough pizza (which he luckily liked), because once he was done, we were all done. Cleverly, we anticipated his loss of interest in the food (which has more to do with him stopping than appetite) and ordered his dessert pretty quickly (the moment his main course arrived!). We survived the visit and will probably even go again, someday.
Our lives have progressed a great deal in the last twelve months. B’s development has accelerated to the point where life is easier (or at least differently difficult) and we can bravely try new experiences. In retrospect though, the restaurant visit was a little too stressful to be properly enjoyable and we were perhaps getting a little ahead of ourselves. Nonetheless, I’m glad we tried it. We learnt something.
Over the past couple of weeks I have written about B’s diet and the difficulties we face regarding food and our autistic child. Mostly I’ve shared the problems and the frustrations. But like the experience described above, the last couple of years haven’t just been about surviving and struggling. As a result of my son’s eating issues, we’ve learnt a great deal about autism. For all the nightmares we’ve faced, we’ve also learnt to understand how eating issues can reveal some of the factors right at the heart of autism. We know our son better as a result of the battles with food, so some good has definitely come of it.
So what have I learnt? First and foremost, I’ve learnt that, in common with many autistic children, my son’s dietary problems are a result of sensory issues. Understanding these is the key to understanding not just the eating problems but a whole host of related behaviours and characteristics. For example, if B has a sensory overload during mealtimes, it becomes very difficult for him to sit calmly and focus on one thing (like eating). I imagine it’s like that feeling when you have so many things to do that you don’t know where to start, and get in a flap. I do this on a daily basis at work, but usually am able to sort, organise and order the avalanche of thoughts in my head. Imagine being unable to do this. No wonder it’s difficult to sit and focus on a meal.
One strategy we used to overcome this was to change B’s position at the dining table. Previously, he could see the living room from where he was sat, and he was distracted. By sitting him facing a wall, he found it much easier to sit and eat. It seems such an obvious thing doesn’t it- no distractions at dinner times. Where I think we’ve failed in the past is that we’ve already raised a child who is able to focus and sit and eat (though not as well as I’d like). My eldest son was not distracted by such things as the living room, so we did not think of them as a distraction. It takes a lot of adjusting to think like an autistic child.
Another sensory issue at the dining table is the need to feel ‘grounded’. I believe this is due to his proprioceptive senses. For B, this means he absolutely has to have his feet on something, usually the wall. At school, he leans against his T.A. whilst eating. It’s like he feels a lack of security just perched on a chair and needs to feel pressure against his body. This reminds me of Temple Grandin’s work with cattle and her invention of a squeeze device which does just this. The result at home is that B cannot sit still and rarely sits in what you’d call a ‘normal’ way. We have a child’s table that allows him to keep his feet on the floor but I don’t think he feels any more grounded there than on the bigger table. We’ve tried a weighted blanket (so expensive. I get quite annoyed by the price of some special needs products. It feels like we are being taken advantage of. Anyway, we made our own) and a wobbly cushion. B was fairly indifferent to these, as they did nothing to help with his need to keep moving.
It’s quite possible that B has an over sensitivity to certain tastes, textures and temperatures. From a very early age, he would have a screaming fit if his food was too hot (which it never was) and would much rather eat most foods cold. This extends to the other extreme. B definitely has an under sensitivity to cold food. As mentioned last week, he lived on ice products for a long time, and still craves freeze pops and jubblys. He crunches through the ice with his teeth in a way that sends a chill through every adult in the room. We’ve often caught him licking the freezer door too, just to get the sensation (he also does this in supermarkets). Many times I’ve paid for him to visit a play centre and then watched him spend almost the whole time there eating a Slush Puppy or ice-based drink. A current fave is jelly, a bowl of which my wife makes daily.
With autism comes a certain rigidity of thought and inability to adapt. I guess this is linked to a need to make sense of, and control, what can be a confusing and overwhelming world. As far as food is concerned, this translates to a complete unwillingness to try new things or accept any differences in food. Readers will recognise our experiences of buying the ‘wrong’ oven chips or a slightly different pizza. I’ve read of families for whom this extends to the actual packaging in which food comes. Thankfully this has never been an issue, so far. B also compartmentalises what he likes and where he likes it. As a result, he will eat some foods at school but not at home. A few parents we know report how their child will not associate drinking with something you do at school, and will go all day without liquids!
At the heart of our concerns about poor diet is the effect it will have on our child’s health. Without a doubt, B’s behaviour, attention span and ability even to communicate are linked to his diet. Although he will never, ever say “I’m hungry”, we have learnt to read the signs through a change in him. Quite frankly, he becomes a little monster when he needs food. We stick, where possible, to set mealtimes so he gets fed regularly. But often, if he has barely touched his lunch, it will become very apparent as we approach evening mealtime. He cannot articulate his hunger through language, but boy does his mood tell you it’s time to get some food in his belly. There are of course much wider health implications of a poor diet. We know a child with aspergers who, aged 16, has a severe iron deficiency. B has no physical signs of being malnourished or lacking in any vital nutrients (yet). In fact, when I look at him, a picture of beautiful health and energy, I have to ask myself how this is possible on a diet of ready salted crisps. Perhaps there’s more omega 3 in them than I thought.
So I’ve learnt a great deal, but at the same time I’ve realised I know nothing. There’s so much more to discover and so many more mysteries to unravel in my son’s ongoing relationship with food and eating. My wife wants me to learn more about the ‘Tinsley House Diet’ and has pointed me towards a Mumsnet thread and a book called ‘Is That My Child? The Brain Food Plan’. I’ve read the first page, but stopped when it started using words like ‘Bpoptosis’. I think I’ll have to work up to that one.
Thank you to everyone who has read through the last three weeks of rambling notes about my son’s diet. Is it just me, or is anyone feeling hungry? Today, we’re off to my sister-in-laws house. She has, much to my delight, moved in with a chef, who is cooking my lunch today. Result! Unfortunately, I know B will not be tucking into the delicious Sunday lunch he has prepared. He’ll be ‘sat’ on the sofa by which I mean, doing a headstand), picking at a plate of Smiley Faces, separate and different from the rest of us.
Happy, but different.