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Labradorite Bracelet
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Cute Snail Dust Plug Charm/Phone Charm
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Pink Roses & Butterfly, Shabby Chic Junk Journal
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Jasper and Silver Pendant
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A6 Coptic Stitch Notebook
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Jasper Pendant
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Beaded Snowman Dust Plug Charm
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Single Wrap Purple Bracelet
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Blue Floral, Unembellished, Junk Journal
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Handmade A5 Faux Leather Traveller’s Notebook
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Large Labradorite Statement Pendant
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Self Care Junk Journal, Soft Cover
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Patchwork Traveller’s Notebook
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Alice in Wonderland Shabby Chic Junk Journal
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Gemstone Dust Plug Charm (Rose Gold Colour)
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Rose Quartz Bracelet
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Pink & Green Shabby Chic Soft Cover Junk Journal
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Snowman Dust Plug Charm/Phone Charm
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Edith Holden Traveller’s Notebook
Edith Holden Traveller’s Notebook
Handmade A5 Butterfly & Rose Traveller’s Notebook
Handmade A5 Butterfly & Rose Traveller’s Notebook
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Pink Edith Holden Junk Journal
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Coptic Stitch Journal
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Halloween Junk Journal
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Gemstone and Copper Wire Pendant
Gemstone Dust Plug Charm (Silver)
Gemstone Dust Plug Charm (Silver)

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Food and Pathological Demand Avoidance

Food and Pathological Demand Avoidance: our experience by Ramblings of an Autism MumFood – 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

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6 Comments

  1. Lisa
    29th March 2019 / 6:56 pm

    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 🙂

    • Lyn Haslegrave
      Author
      5th April 2019 / 8:38 am

      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

  2. 14th February 2020 / 11:15 pm

    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.

    • Lyn Haslegrave
      Author
      19th February 2020 / 10:32 am

      Thank you for your kind comments. If sharing my family’s life helps just one other family then I feel blessed.

  3. Richard
    8th August 2021 / 7:59 am

    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.

    • Lyn Haslegrave
      Author
      8th August 2021 / 9:06 am

      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.

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