How a Stranger’s Advice Helped my Autistic Daughter Overcome her Eating Issues

My daughter has always had struggles with food. From the moment she was weaned she has refused, spat out or thrown food away. Her weight has always been a concern yet no-one seemed to take me seriously.

That was until she was diagnosed with autism just before her 5th birthday and on her diagnosis letter they wrote about her limited diet and sensory avoidance with food.

I was so excited a year later when we finally received an appointment with a sensory trained occupational therapist for children with autism.

I was sure this professional would help us.

We tried everything she suggested. We did so many different ‘desensitisation’ activities like messy play, baking and play doh. We had fun with plastic food and real food and we looked through recipe books together.

Yet her eating remained as restricted as ever and her weight continued to drop.

Eventually the appointments drew further apart until there was nothing left to suggest.

If anything we had dropped foods and my little girl was living off small amounts of cows milk, licks of chocolate sandwich spread, peppa pig spaghetti and cheesy pasta from a well know pizza restaurant.

Then at 6 years old she became very ill with pneumonia and stopped eating altogether. It was terrifying! By this time I had managed to get her to drink one brand of orange squash to keep her from dehydration but then the manufacturers suddenly stopped making it and I broke down on the phone to them. (https://faithmummy.wordpress.com/2015/04/17/to-the-woman-on-the-helpline/)

I was watching my own daughter starve herself.

Miraculously we got through it but her eating was as restrictive as ever and we had an urgent referral to child and adolescent mental health. By urgent they really mean three to four months by which time things were at true crisis point. There was no fluid or food consumed the entire school day at this point and very little at home either.

We did everything that was suggested again. We dished up what we were having on a side plate but ignored it if it was refused. We lessened her anxiety by allowing technology at the kitchen table and gave basic food choices. We tried being strict. When that failed we tried being lenient. Nothing changed.

A year later child and adolescent mental health withdrew too.

We then saw a dietician whose plan was supplementary drinks. My daughter refused to drink them.

There were no professionals left to try.

We did everything the professionals suggested and still we could not get my daughter to eat.

Then one day I was chatting to an editor of a site I write for. She asked if I would write a blog for the site but she had a radical suggestion that changed everything. She asked if I could ask my 8 year old daughter why she didn’t like to eat.

A stranger suggested something simple but incredible: ask the child.

So I did. And she told me this: https://autismawareness.com/the-reason-i-dont-like-to-eat/

The site published the piece and it went viral. Thousands upon thousands were touched by the private thoughts of an 8 year old who struggled with eating.

Rachel had never met my daughter. She has no professional training in autism or eating disorders. She is not sensory trained nor a child phycologist. Yet her advice was so simple but life changing. I will never be able to repay Rachel for saving my daughter’s life.

It’s now seven months since that blog was written. When my daughter wrote that she only ate a tiny amount of foods. Her BMI was less than 14 and her weight was on the 0.74 percentile. In other words she was not even on the chart and she was dangerously underweight! She was pale and ill looking with dark circles under her eyes. She had no energy and her mental health was poor. There was a whole lot of talk about feeding tubes.

Naomi’s post reached over 282 thousand people just on the one site. Most importantly though it reached down into my heart. I read and reread her thoughts and radically changed how I fed my daughter.

I took meals to where she was.

I let her eat in whatever way she felt comfortable.

I made sure food never touched.

I stopped nagging her to eat.

I bought and cooked what she liked the way she liked it.

We stopped eating at the kitchen table and let her eat while watching you tube or TV.

Seven months later and no-one is talking about feeding tubes anymore. Her BMI is now 15.4 and she is on the 4th percentile on the chart for her weight. She now has twenty items she will eat compared to four seven months ago.

My daughter still has an eating disorder. She still has autism. But we are making progress thanks to one stranger’s life changing advice.

What can we all learn from this? Listen to what the person you are trying to help is saying. Really listen. What works for one person is not always right for another.

Oh and always be open to advice…even if it comes from a stranger!

Rachel holds a very special place in my life. She was the stranger who helped my autistic daughter overcome her eating issues.

There is no payment or thanks ever enough for something like that.

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The seven hurtful things people say about my child with an eating disorder

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My beautiful blue eyed daughter has recently been diagnosed with an eating disorder at the tender age of seven. While some people have been very supportive others have said some things that really hurt. Here are the most hurtful things I have been told so far:

1. She will eat when she is hungry!
No she will not. If she did she would not have been diagnosed with an eating disorder. She doesn’t ask for food or drink and is not aware when she is hungry. She would go all day without drinking or eating and not even realise.

2. That is what happens when you give in to fussy children!
So is giving my daughter the food she will actually eat and keeping her alive giving in to her? So the fact she would starve herself to the point of requiring medical attention should be ignored just so that I don’t ‘give in’ to her? In that case when you next go to a restaurant or take away don’t bother looking through the menu at what you would like just take whatever they give you and eat it! There is a clear distinction between a child with fussy eating, a child with major sensory issues and a child with a complex eating disorder.

3. Maybe if you let her make it she would eat it.
My daughter enjoys making cakes and dinners and puddings. She enjoys shopping for ingredients and following recipes. But she still refuses to eat it. There is a big difference between cooking and eating. While some children’s issues include handling, mixing and cooking food, my daughter will happily participate in these activities until you ask anything to pass her mouth. I wish I could explain why that is, but I can’t.

4. Can’t you just force feed her?
That seems like abuse to me. Yes there have been times where I have had to almost force vital medications into her and spoon feed her yoghurt or pureed fruit just to get something inside her. But force feeding her would not only have a huge phycological impact on her metal wellbeing but it would also send her the message that she has no control or choice. When I tried feeding her before she would simply vomit it back up. She needs to be able to control what goes inside her mouth and learn that food is good. I need to teach her that eating is positive and not a forced issue that creates distrust and upset.

5. You should try taking cookery classes. Maybe she just doesn’t like your cooking?
This is implying that I am the cause of my child’s mental disorder. Thank you for that! Are you aware I have another child who not only loves my cooking but often wants more and eats vegetables, fruit, salad and a good range of meats and carbohydrates? Have you seen the meals I make for my children? I don’t need guilt heaped on me on top of the stress I already have. That only makes things worse.

6. They never had such rubbish in my days. You just ate what was put in front of you when I was young.
I am so glad you were able to eat the food you were given. I am very confident there would have been children and adults around in ‘your day’ who also had eating disorders you just may not have been aware of them. As awareness grows and more people are willing to talk about these things the more it may ‘appear’ to increase, though I believe it has always been there.

7. Let me have her for a week and I will cure her.
Thank you once again for making me feel inferior and inadequate. What you may not realise is that I would never put my daughter through the stress and anxiety of living with anyone else for a week. Her issues run deep and she requires patience, understanding and love. I would love one day for her to be ‘cured’ but until then we work daily with psychologists, her school, paediatricians and a dietician to monitor her mental well being and physical health. Would you manage to juggle all of that?

Eating disorders and mental health in young children are so often misunderstood. Every single day is hard to watch my beautiful baby struggle with something as basic as eating. It is heartbreaking to watch her lose weight. It is scary thinking of the future. She needs support and understanding, not judgement or pressure.

So what could you say to me instead?

How about ‘do you fancy a coffee and a chat?’ Or simply celebrate the good days with me when she perhaps manages her first ever packet of crisps or half of a banana?
We are not going anywhere. And sadly neither is her eating disorder.
Whatever the future holds I will be right there holding my daughters hand. We will get through this together.