Autistic daughter eating disorder

Hello,

Our 9 yo daughter is what you could call high functioning and recently received an autism assessment. She has OCD behaviours and has also been progressively suffering with eating challenges. We are at the stage where she no longer eats in front of us and wants us to believe that she has not eaten in months. She, in fact, will secretly eat food that we’ve left in the kitchen but she makes sure nobody is anywhere near the kitchen or even downstairs before she goes in there to eat. On top of this all, she has started hiding her face from us and triggers if she thinks we are looking at her face.

We are extremely concerned at her level of intake but have actually discovered that if we, her parents, are not around then she will eat in front of other people. So we can drop her off at her cousins house and she will ravish what’s at the dinner table. If we confront her about this, she goes into an aggressive rage. It’s clear that she wants us to believe she has not eaten in months and suggesting otherwise brings her to boiling point.

We don’t know what to do and are bouncing around the system where she cannot communicate with therapists because they touch on the issues above which trigger her. All her behaviour issues go away entirely when she is at someone else’s house - even letting others see her face and interacting and socialising extremely well, eating well and no meltdowns. But when she comes home again, there is a backlash and she reverts to the “rules” she has made for herself inside the house.

She is refusing any medication and we are discussing options with a therapist about taking her to a clinic but we are extremely concerned at how they might handle her and how she might, in turn, retaliate towards us longer-term. Does anyone have any advice on this?

  • It sounds an extremely difficult and delicate situation. 

    I would echo what is said above about not making a big fuss and putting extra pressure on her. The self imposed 'rules' seem to be a way of her gaining control over the situation and may be rooted in anxiety.

    There is a specific 'exposure anxiety' that autistic people can experience. That may be why she does not want anyone looking at her while eating. I have experienced something similar nearly all my life. It first started in the overwhelming sensory environment of the canteen at my infant school (aged 4 or 5). In my case I was comfortable eating in front of my mum but nobody else. Your daughter seems to have the opposite of that, in that she can eat in front of other people but not her parents. If there was anybody else there I could not eat. My mouth would go dry and my throat would close up. If I tried to swallow any food it would make me retch. 

    I would suggest that you respect your daughters wish for privacy while eating. You could perhaps serve her food in another room and reassure her that she will not be disturbed there. You may have already tried that, as you state that she no longer eats in front of you. If not it's worth a try. Of course she may still insist she cannot eat at home. She may have a meltdown and throw the food at the wall. She may hide the food and then get up in the middle of the night to heat it up in the kitchen. Whatever she does will be under her control and that should hopefully help to reduce the anxiety around it. 

    It is quite common for autistic children to display different behaviours at home compared to at school or while visiting another home. Maybe try and reduce the times when she visits other households, in order to try and build a new routine of eating in her own home. Although if she currently has a specific times when these visits happen, trying to change that could be counterproductive.

    I think you are right to be concerned about the approach therapists might take in a clinic. Autism based eating disorders are very different in nature and it is important that any therapy is tailored to her specific autistic needs. A clinic is also likely to be overwhelming in terms of the sensory environment.

    I am not sure what medication would help in this situation. Autistic people can respond very differently and often negatively to medications. Perhaps input from a dietician could help and dietary supplements could be given, if she is willing to take them.

  • Hello ,

    I'm sorry to hear that you are having such a tough time with your daughter. It sounds like you have already sought some support from a therapist, but you may want to use our Autism Services Directory to search for relevant services that may address eating issues in your area that cater for people with an autism spectrum disorder. You can find the Directory here: https://www.autism.org.uk/directory 

    You may also like to look at the following information from the NAS on eating advice for children with autism: https://www.autism.org.uk/advice-and-guidance/topics/behaviour/eating/all-audiences

    All the best,

    ChloeMod

  • I'm so sorry to hear that you are going through such a difficult time as a family. It's difficult for me to provide specific advice given that I don't know your family dynamic, but one thing I will say is that it's important to not make a big fuss about food. Putting pressure on children can often make them retreat, and she might be feeling that all eyes are on her during meal times. Of course this is an assumption on my behalf, but I think it's important xxx