Transitioning into Adult Eating Disorder Support: Our Son with ARFID

In this Blog post, a mother reflects on her family's ARFID journey and that for her son, the best course of 'treatment' has been none at all.

Our son was officially diagnosed with ARFID in 2020, although his GP and school had been supportive in treating him as if he had ARFID for years before that.

I was very aware he had some form of selective eating difficulty from weaning but when I asked the health visitor for help at about 18 months, she dismissed it. Not particularly helpful, I didn’t ask for any more help from health professionals until he was about 8.

Our journey has been a constant rollercoaster ride.  The hardest part I think was having a child who was undiagnosed autistic and had undiagnosed ARFID;  the combination of the rigidity and super high anxiety certainly made for some very traumatic times.  Eating just didn’t bother him and he would happily carry on with his day without food if we didn’t regularly coax him.  Too much coaxing resulted in no eating for hours. From early on, my mum said:

’Just feed him what he will eat. It doesn’t matter if it’s only carrots and sweetcorn or only brioche’.  

So rather than fight his food refusal, we took our cues from him and thankfully, that has been the only consistent thing that’s worked and which has kept him for the most part, out of hospital. 

In 2019, due to worsening physical health concerns, our GP referred our son to the community ED team; he wasn’t gaining weight and only eating a very small amount of calories. In 2020, they officially diagnosed him with ARFID.  Along with six sessions of anxiety management, they saw him every couple of weeks to take blood, do ECG’s, chat about his ‘safe foods’ and food chaining, and to weigh and measure him.  This support was vital as we couldn’t get his weight over 8 stone.  They explained that he was heading towards an NG tube if he couldn’t increase his weight through food intake.  Thankfully being older, he was finally able to reason with himself that unless he increased his intake, he would likely end up with a tube or PEG.  It was also around this time that he left his 6th form which instantly reduced his anxiety.

The team suggested protein shakes & replacement meals but ARFID meant he wouldn’t accept any of those. Instead, he said he would try increasing his milk intake himself.  This was the start of him realising that the only person who could truly help him was himself.

Once he turned 18 everything changed.  We had prepared him for being signed off from the community paediatric ED team (who had been one of the first teams to be trained to support people with ARFID and who could do the PARDI assessment) but with no adult ED team in place to take over his care, we felt very alone.

A few weeks after the paediatric team signed him off, the adult autism team called, explaining they had been successfully funded to provide an adult ED service.  However on the day of his first appointment at the new place, he refused to go in! There was this brilliant new service but his difficulties with transitioning stopped him from accessing it. I was devastated! The lady there said there was a slight chance he might suddenly improve his eating on his own; knowing now that no health professionals would be involved.  Amazingly, she was right!  He seemed to be motivated to help himself and felt better able to eat with nobody monitoring him.

I continued sending the GP his weight, height and blood pressure readings every two weeks, so at least a health professional was still monitoring him but that’s stopped now because he is having fewer physical symptoms and is finally gaining some weight!

So one year later and his weight now fluctuates between 8st 13 - 9 stone 1.

I would say the hardest part of his ARFID is the cyclical nature of his food choices. We never know, day to day what he will accept.  That’s exhausting and planning food is tricky but as well as the evening meals he cooks himself, he eats MacDonalds most days (a few chicken nuggets or part of a plain cheeseburger), along with a pain au chocolat and usually some Mikado biscuits. 

We know we can always go back to the GP or self refer to the adult ED team but for now, this improvement on his ARFID journey has made enough of a difference to self manage.

Hopefully he’ll be accepting some more new foods in the near future.