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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16 thoughts on “How a Stranger’s Advice Helped my Autistic Daughter Overcome her Eating Issues

  1. I work in a CAMHS team as an administrator so I hear about this often. What an interesting concept. Of course we cook and eat things we like, we eat in spaces made for us to eat in. So why not our children.

    Liked by 2 people

  2. Sometimes we work so hard trying to fix a problem we forget to ask the person it affects most. Not living in their hyper sensory minds we forget that their brains are wired differently and they see things differently. That they smell colours, they taste smells etc. We forget that they pick up on our frustrations and cant comprehend that we want whats best for them. That simple question has solved a massive mystery, not just for your daughter, but for mine too. I read her answer a while ago and the penny dropped. I now ask her. I have learned to explain things. Why I want her to eat her green vegetables. I have taken her suggestions on board (always cook brussels sprouts in bacon because they taste better). And we have an agreement. She loves home cooked food, she knows how much effort goes into it. I wont force her to eat things she doesnt like, but when something tastes a little different, its because I was having a bad day and didnt put enough oregano in the pasta sauce.

    That simple suggestion has helped another family out. I now ask my daughter regularly about things. Not just food. “how would you feel if we went to xyz instead of abc?” I will get an answer back and it will usually indicate her thought processes. Simply asking has made life easier. Thank you for the two articles. They were wonderful.

    Liked by 2 people

  3. This took my breath away. I shared your article where she weighs in on what eating is like for her. This “just ask” method is so important and one I stand behind for any parent who has worked and worked with their child to no avail on a non-negotiable. To be certain, it is not about the child controlling all, it is about meeting her where SHE is as the best way to to start–it will improve from there. “Just Ask” has been my mantra for years (I even did a TEDx Talk on Just Ask) and yet…I often forget to heed my own advice. You must be SO RELIEVED! She looks so happy in the above picture:-) Congrats momma. This is a wonderful reminder!

    Liked by 1 person

  4. Wow, sounds like a really traumatic time for everyone. It’s amazing that all it took was that simple thing, what a blessing that you took her advice. X

    Liked by 1 person

  5. I had a child who was 14kg at 8 years old. He is now a very healthy 11 year who eats constantly. We were fortunate to have an excellent dietitian who told me to give him exactly what he would eat and let him eat anywhere he wanted and to let him watch TV, have the iPad at the table or anything else it took. She told me to throw all the usual parenting ideas out the window, so we did, and it worked. It took time, but it worked.

    Liked by 3 people

    • It really is about being lead by them isn’t it. We are not entirely out of the woods yet and Naomi still very much has an eating disorder but we are making progress and that is all I can ask. E still have fortnightly weigh in’s and I know it would take so little to set her backwards but for now every item eaten is a huge bonus!
      Well done for being the best mum to your son too!

      Liked by 2 people

      • It is a long road. We had some major setbacks but I am now confident that we are over the food difficulties. It took a long time to reach this point though. I wish you well.x

        Liked by 1 person

  6. so pleased she is managing to eat more things, and gaining weight. I’m not sure we’ll ever feel out of the woods with food but I am learning to relax enough to be thankful for the good stretches – we are touching the weight chart percentiles again – just,- and as you say the relief is intense.

    Liked by 1 person

  7. I have a child that is healthy eats a wide range of foods but she can’t eat soft fruits and hence she has ruled all fruits from her diet.i have to blend them and she can drink them as porridge (she even calls it porridge).the only vegetable she will eat is the hard ones like broccoli,Brussel sprouts asparagus if she. Bites in anything soft she gags and throws up.i know she has sensory issues and she is seeing an OT specialist at school but this article has given me perspective I have never asked her nor found out why I will surely ask today .thanks a lot

    Liked by 1 person

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