It was very difficult to get anyone to listen to my concerns about E’s weight and her disinterest and aversion to food. Every time I raised it I was told it is common for autistic kids to be picky eaters and to be underweight.
Finding the right diagnosis
Things came to a head when E was in the emergency department at the RCH on an unrelated issue.
A social worker came to speak to me about her being so ‘thin’. It was 1:15am, I was beside myself, so this poor young woman copped the full force of my frustration with the health system, the disability system, and the chasm in between where there should have been an overlap.
She called for a paediatrician to consult and it was nearly 4am by the time anyone responded. I remember this woman saying “what is it that worries you most and that you think we’re not hearing?”
By the following day we had a diagnosis of ARFID and suddenly I had a new sense of purpose.
There was research to read through, strategies to consider, and a community of people who understood what we were going through. I had never heard of ARFID before that night. Thirteen months later my daughter’s physical health has improved and food is no longer our central source of trauma. We are forever grateful to the RCH, our care team and the broader ARFID community.
Challenging and confronting
Meals and the sharing of food, were so central to our way of socialising…so having a child who found food confronting was challenging on many levels.
We were very relieved to have a whole new way of thinking about food, eating and meals that eliminates so much of the stress.
I wish I’d known earlier that it was ‘ok’ to engage the help of professionals for us as carers…when your child doesn’t want to engage, you are essentially providing their therapeutic support every single day.
Support and services for the family
Services we have in place are;
- Dietetic Counsellor
- Psychologist (specialising in autism spectrum disorder)
- Physiotherapist
- Occupational Therapist
I’ve found learning from the experiences of other families has provided some structure and support along the way.
I get a great deal of joy from watching my daughter while she is engrossed in an activity (movie, online group) with a grazing plate beside her and seeing her eating without noticing, without any distress. I do believe it’s about celebrating every small win.
My tips for other parents and carers
It’s a slow process, and it isn’t necessarily a straight path – just keep soldiering on with your vision set in generally the right direction.
Do you have a story to share?
Sharing your story can help other carers feel connected, understood and less alone.
We greatly value your contributions.
