My First Steps ED Experience

Ever since my son started the weaning process as a baby, he has always been fussy eater (that’s what I put it down to at the time)

I tried several different approaches, put it in front of him and saying that’s it there’s nothing else to eat, to hiding food in deserts / puddings – as you can imagine none of the options worked.

My son and his twin brother would regularly attend child centre services and I would constantly ask the helpers for guidance, ways to improve his eating but none seem to give any way forward, apart from visiting CAMHS – who were amazing, but his eating never improved.

After several years of stressing about his eating and realising that he was still growing I became less stressed about what he eats. This was around the time I realised my son was Autistic and could be down to his sensory issues that he just didn’t want to eat many foods.

Fast forward several years, my sister sent me a link which was titled ‘Avoidance Restricted Food Intake Disorder’ – having a look at the link, it described my son to a T! At first, I thought, what a huge relief, which was shortly followed by, here’s my next battle!

Upon speaking to a Dietician, he said to me ‘my son doesn’t qualify to have ARFID because he was still growing and putting on good weight’ – Ok, not a problem I thought and left it at that.

Still eating the same, repetitive food for a year or so, I had an appointment with a new Dietician who mentioned ARFID. She told me she would write to the doctors to get a referral to First Steps ED!! Finally, a professional who understood my frustration and was giving me a way forward.

I was approached by First Steps ED, who arranged an assessment consultation with my son, school and me – although she could not diagnose it seemed he does have ARFID. She offered my son for one-to-one support and enrolled me onto a parents course and support group – what a relief that there are other parents out their going through the same situation as me!

They helped me to understand more about ARFID, the process of brain when it comes to trying new food, to hearing other helpful hints and tips for them and other parents.

Before these groups, I have never felt so helpless; a failure as a mother (as to why does my son only eat certain food, surely he should eat some meat and veg would be a regular comment I would get!), and just thought there was no way forward.

Now, after attending these sessions I feel calm around food, and other people’s judgments, understand why my son will not eat and food so this give me empowerment and the huge relief that I am not on my own!!

A weight has been lifted from my mind and I am ever so grateful to the service that First Steps Team have provided me and I know that they are there for me when I need them.

Thank you, thank you, thank you First Steps Team – Keep doing the fabulous work that you are doing!!!

Contributed by Lucy Perkins