Food – we all need it, we can’t live without it. But, it provides us, as a family, with so many issues. Something so basic and fundamental to life as food should be simple….. However, dealing with food and Pathological Demand Avoidance is far from simple.
Background
I have twins. A boy and a girl. Both have been brought up the same way. Both were weaned in the same way. We have always believed in healthy eating so I made my own baby foods. Interestingly, we went to a wedding and, to try and make things easier for us, we bought jars of baby food. Neither of our kids would eat it – isn’t that interesting…..
For the first few years, things seemed to progress smoothly. Both my kids would eat anything that was put in front of them. I considered myself very lucky. Neither of them had an unhealthy sweet tooth, they would rather have fruit than sweets. My daughter went to a party and the mum sent me a photo. She was astounded to see my daughter sat, by herself after everyone else had left the table, eating grapes, carrots and baby tomatoes! Both of my kids were the same and then, problems began to creep in regarding my son’s eating.
Food and Pathological Demand Avoidance
Messy pasta was not tolerated. I had to put pasta in one bowl and whatever sauce we were having in another. Then onion had to be left out. Garlic, this devastated me as I love garlic and hate vampires…. but our son couldn’t tolerate the taste. Courgettes suddenly became the worst thing ever. Then one dish meals, meals that we often had, wouldn’t be eaten
Things now are quite severe. He will no longer eat beef, chicken, pork, mince or lamb, but he will eat bacon, beef burgers, chicken nuggets, gammon and, on occasions, fish fingers. With regards to vegetables, he will now only eat sweetcorn and carrots. Potatoes have to be chips or what I call chippy tattas which are potatoes cubed and roasted. Luckily he will still eat grapes, bananas and strawberries but his diet is extremely limited.
Sensory issues
Much of this is to do with sensory issues.
When you make a particular dish often enough, you no longer measure out ingredients. It took us ages to realise that this was a huge problem. When our son had a dish once, he expected it to be exactly the same next time. Of course, when you are winging it with your creation, this doesn’t happen. When you make mash potatoes, they are generally not the same each time, slightly more butter, slightly less milk, more lumps…… All these things have a great sensory impact leading to refusing to eat the dish.
We have come to the realisation that, for our son to eat something, it usually needs to be exactly the same as the last time he had it. He self regulates this by choosing to eat things that do not need to be “mixed” at home. For example, chicken nuggets are generally regular in texture and taste. There isn’t much variance in the same brand of fish finger. Sweetcorn and carrots do not vary in texture. These are also “yellow” foods. Colour also has a huge impact. If its green, it will not be eaten.
Cutlery
Moving on from the actual food, we also experience sensory issues with regards to cutlery.
Our son was constantly using his fingers. If we insisted on the proper use of cutlery he would refuse to eat – even if it was his most favourite food in the world. We then had a lightbulb moment. It was the feel of the cutlery! If the cutlery did not feel right in his hands, he couldn’t use it. This was a revelation. It was also interesting to note that the feel was different for both hands.
We now have specific cutlery, with large handles, for use at home. We try to take these with us when we will be eating out, no matter where it is. As a plan B, I also have some cutlery handle covers that live in my handbag. These, whilst not perfect, allow him to use different cutlery.
Drinks
We have to take a cup with us for him to use. He will not use glasses or cups provided by restaurants etc. If we have forgotten his cup, he will have to drink from the bottle which limits what he can have. If we go out for coffee and cake, his drink will be in a to go cup, even if we are eating in.
Control
Whilst many of these things are sensory in nature, there is also a large element of control. For those that do not know, Pathological Demand Avoidance is an anxiety based need to be in control. My post, Pathological Demand Avoidance, gives a more detailed explanation of this Autistic profile and how it affects us.
For our son, so many things are changing and are out of his control. What he eats is, to an extent, still within his control and, whilst causing us major stress at times, is not a battle to be fought at this current time. We are now supplementing his diet with multivitamins and we make suggestions regarding drink and food but, we allow him possibly more control than a lot of parents would be happy with. This, for us, is a coping mechanism. It enables us to get through the day and fight the battle that is currently the priority.
How do you deal with food and pathological demand avoidance? I’d love to hear what strategies you use. Why not let me know in the comments below?
Until next time, stay strong and remember, you are enough.
Lyn
Wow, for years I thought I was going mad, that somehow bad parenting skills had produced what I could only describe at times as the Tasmanian devil. My daughter has been an absolute horrific eater for years (13 now) and it is only once we are very nearing the diagnosis of PDA that I understand her issues with food (and everything else). Yeah, I let her eat what she wants because the last time we tried to force the issue of a healthy meal sat with us, her parents, it resulted in a very bruised me, a broken iPhone 8 and no food was eaten at all. Reading this has made me feel a whole lot better…thank you 🙂
Author
It is a real balancing act that really does make you think about priorities. I’m so glad that the post has helped you. Just remember that you are doing a great job! x #itsok
Wow, very blessed to have found your blog. I have 4 almost adult children, 3 with Autism and Fragile X syndrome and my daughter has Asperger’s. We are just figuring out she may also have PDA. Although she will try most things, food and eating healthy has always been a challenge. I look forward to reading more and learning. Thank you for sharing your family’s life.
Author
Thank you for your kind comments. If sharing my family’s life helps just one other family then I feel blessed.
Hi – When you wrote this, what she was your son… What kind of age range were you referring to?
Our nearly-5-year-old daughter is on the spectrum and is being increasingly picky around food. I’m wondering where this might be going…
Thanks for the thinking about how home-made food varies, (and about cutlery, too). Food for thought!
R.
Author
Hi Richard, thank you so much for reading my post and I am so glad that it has given you some ideas to think about.
I wrote this post when my son was 12 and he is now 15. I would like to say that things are getting easier but, if I’m honest, this isn’t really the case, they are just different. He was about your daughter’s age when the difficulties with food started and it was a gradual change. He now has a slightly more varied diet but, it is still a long way from the healthy diet I would like him to have, foods still need to have a consistent texture and flavour for him to eat them. Finding the cutlery was a godsend. He still does prefer to eat using his fingers but at least we have cutlery that his hands will accept.
The one thing that we have learned over the years that has helped us about all else, is to remember that each child and their challenges are different. What works for one, will not necessarily work for another. Over the years we have had very little help so it has taken us a lot longer to try and muddle our way through. We are not experts by any means but, it is my hope, that by sharing our experiences with others, we may be able to give you some extra ideas to try.
Hi, thanks so much for this, I can relate very strongly to your post. We have just realised our 5-year-old son may have PDA and think his dad may too! So I have 2 very fussy eaters to deal with. My son seems to eat a lot less range than yours (we’re down to one brand of sausages, or fishfingers for dinner, no fruit or veg of any type). He prefers things from packets because they are always the same. And will only use one set of cutlery!
I can’t at the moment find a multivitamin he will accept… I will just keep trying new ones when I feel I can face the inevitable rejection.
Like you suggest I try and accept what my son is like and try to avoid food battles at the moment, hoping he may very gradually branch out more as he gets older. He copes quite well with school dinners which has been a huge worry (at first he would not eat anything at school) so I figure he needs even more control over food at home for a while while that settles in. Sigh. Not at all easy, but your post has really helped know he is not the only PDA fussy eater out there, and I am not the only struggling mum! xx
Author
Thank you so much for sharing this with me! The struggle is one that, unfortunately, many face with little to no support. I find this distressing which is the driving force behind my blog. We have indeed progressed with our son now trying more things but, it is still very limited when compared to a healthy varied diet. I’m under no illusion about the journey that we still face. The biggest tip that I can give is to pick your battles. We’ve come up against a lot of criticism over this style of parenting and my response is always “spend time in my shoes before you pass judgement”. Control is huge and, as you rightly point out, when they spend the day at school where control is limited, we have found that more control is necessary at home to reduce anxiety. Please take comfort in the knowledge that you most definitely are not alone and you are doing great! xx
I’ve literally stumbled onto this – and it’s opened my eyes – never had a formal diagnosis for my 13 year old daughter apart from dyslexia ( awaiting CAMHS)… but she’s always hated food. We are down to nuggets ( eating less of them each time), sausages, a mouthful or two of mash potatoe, cucumber, carrots, plain rice, yogurt and crisps n chocolate. I’m terrified we stay on this road she will be anorexic in another few years ( as the amount of her go to foods she eats is getting less n less).
I’m now going to follow up PDA. Thank you so much, a sobbing mum xx
Author
It’s such a challenge isn’t it! For my son, things are constantly changing and trying to keep up with it is a constant battle. Please don’t lose hope. My son has now started to expand the things that he will eat, very slowly! For us it has been a case of trying not to stress over it and constantly giving him options (not too many though as that causes other issues!). It is quite disheartening to be constantly faced with his refusal to even try a meal that you have taken time to prepare but it is important to remember that you can’t force them. We are still trying to understand how our son’s PDA affects him and, as other things change in his life, so does his PDA. The over riding thing that you must remember is that it is an anxiety-driven need to be in control. Our son doesn’t have any choice in the matter. All we can do is be there to help him learn ways to manage how he is feeling. Even this though is fraught with problems as it is our experience that what helps one day, will not help the next! Stay strong and please remember that you are not alone. x
Just found this searching for information. Sadly, I don’t have a diagnosis for my kid yet (regarding this, several of the standard ODD/Bipolar/Anxiety variety) but I highly suspect it based on how they are naturally. My trouble is, the not-so-great foods are causing issues. We’re in the US where fast food and other items are allowed to be even worse for you sadly. And fast food meals are annoyingly consistent. But they are type 1 also and have high cholesterol at 16. They also have autoimmune diseases and hives/swelling. I *need* to find a way to change their preferred foods out to better, but stable, options. Hopefully someone has an answer!
Author
It is a real struggle. As you mention, fast food is consistent! Unfortunately, I don’t have any answers for you other than to say that, in my experience with my son, when trying to make changes you need to keep them small. We have found that we need to identify just one small thing to concentrate on and then build on that. There is an amazing book called The Slight Edge by Jeff Olson. It is completely unrelated to PDA but it explains this in a much better way than I can! “The philosophy behind the slight edge is to do all the tiny things that appear to be trivial but have a tremendous impact when done consistently over time. These actions usually don’t produce any immediate results (that’s why most people won’t do them), but with time, they become the seeds of your future.” – I hope this helps. Just remember, you are doing your best for your kids and don’t let anyone tell you otherwise x
I hope by now you realise “refuse” isn’t the best word to use, it makes it sound like he has a choice. It actually feels impossible for them to have something that they feel isn’t appealing for any reason.
Author
You are quite right and I apologise for my use of the word “refuse”. I know that he doesn’t have a choice but, sometimes, the frustration that I feel over not being able to help him takes over. My blog is written very much as a means to express how I feel and our experience. I am not an expert in any shape or form, just a mum trying to share her experiences in the hope that it resonates with other parents out there struggling with the same issues. Thank you for pointing this out and I will try to be more mindful over the language that I use in future posts.
Our son was opposite. He is sensory seeking ASD, so he likes LOTS of flavor and texture and wants a large variety of foods. The silverware thing though – he has to have separate silverware for each food item. Things can NOT be mixed. Food has to have separate plates too. Once we realized that, the food arguments and meltdowns disappeared. He does not have PDA though.
Our daughter – who has PDA, will only eat fast food or processed packaged foods. It is a really big struggle. Some days she will not eat at all, aside from one package of seaweed snacks. She is 6 and just diagnosed, so we still have to figure things out. 🙁 She used to eat anything when she was a toddler. This just started when she was 5 and has been getting worse.
Author
Hi Katie, thank you for sharing this with us. I’m so glad that you found out how to help your son, that is amazing. Your daughter sounds just like my son. All I can say is that it does get easier. You will develop strategies to help her. Our son will soon be 18 and, whilst we do still have issues, food is definitely becoming easier. He still doesn’t accept strong flavours and certain textures but you develop work arounds. If we want to have mash, he will have frozen chips. Not the healthiest option but we portion control and at least he is eating. We only buy certain types of sausages which, in a way makes life easier as I don’t have to worry about choosing a flavour. I found that I had to pick my battles and could only deal with one thing at a time. Just be kind to yourself.