Grace’s Journey: Living With ARFID and Autism
When Everything Began to Change
Grace was just six years old when our world shifted. Up until then, she had been a joyful, adventurous eater, always willing to try new foods, full of laughter, and brimming with humour. After her older brother’s restrictive eating habits, she was a delight to cook for. As a baby, Grace had endured a severe episode of gastroenteritis, which led to a cow’s milk protein intolerance. For the first two years of her life, she thrived on soya milk and soya-based products. But seemingly overnight, new challenges appeared. She began to struggle with gastrointestinal issues: reflux, constipation, and a constant feeling of being “too full.” Almost immediately, she started restricting her intake, preferring only cold foods. Within three months, she had lost a significant amount of weight.
Eventually, she was prescribed Lansoprazole and Laxido under a Gastroenterologist. These medications brought some relief, helping her regain weight and re-engage with the activities she loved. For a time, it felt like we had turned a corner.
The Covid Years: A Surprising Calm
Ironically, the pandemic years were the easiest. Grace thrived at home, away from the pressures of school. She was happy, ate normally, and enjoyed phone calls with her friends. We thought the storm had passed.
But when she returned to school, new challenges emerged. Grace developed a sensory aversion to screens for four months. At the same time, her diet began to shrink. First, she limited her intake. Then, she dropped foods one by one until eventually refusing all hot meals. Family dinners became “buffet style,” and though she still joined us, her range of foods narrowed. By Year 6, her distress grew. She became terrified of sickness bugs at school, often refusing to attend if another child had been ill. I began to suspect emetophobia, a fear of vomiting, which runs in our family. Grace missed around 20% of school that year, and her tiny packed lunches drew questions from classmates.
The First Mention of ARFID
“By March 2023, Grace’s preoccupation with feeling “too full” was affecting her daily life. Ballet and Acro Dance became impossible, though she tried to continue as a goalie for her football team. As school pressures mounted, meltdowns at home intensified.”
We sought a private psychotherapist, who was the first to mention ARFID; Avoidant/Restrictive Food Intake Disorder. She explained that Grace’s struggles weren’t about body image but about sensory sensitivities and fear of adverse consequences like sickness. This was the first time I had even heard of ARFID. Grace, meanwhile, was self-conscious about her small stature. Her classmates nicknamed her “Tiny Tim,” which she embraced with humour, dressing as the character for World Book Day. But the psychotherapist warned that her issues were severe and referred her to CAMHS.
Falling Through the Cracks
In June 2023, Grace was referred to an Eating Disorders Clinic. After four appointments, they discharged her, saying she did not have an eating disorder. Her intake declined further. Despite exhaustive gastrointestinal tests including endoscopy and allergy checks no physical explanation was found.
We were offered Step2, a light-touch CAMHS service. The CBT practitioner was kind and tried exposure therapy for her emetophobia, but Grace’s mental health deteriorated rapidly when she transitioned to Secondary School and found the social aspects challenging. Socially she found herself totally isolated and unable to eat in the school environment. A private autism assessment confirmed ASC with high masking.
By then, Grace had reached autistic burnout and was medically signed off school.
Hospitalisation and Refeeding
Thanks to a determined CAMHS psychologist, on our fifth attempt to navigate A&E, Grace was admitted to Watford General Hospital. She was severely malnourished, cognitively impaired, and on total bedrest. She was finally diagnosed through a virtual appointment with the Maudsley, who were incredibly professional, kind and knowledgeable about ARFID. As she gained weight, she rediscovered
small joys, trips to the park, playing Pooh Sticks by the bridge.
The nurses were incredibly kind, sending her off with cards and gifts when she was discharged to the care of Great Ormond Street’s Mildred Creak ward as an inpatient. This was a really hard period as I was not allowed to stay with her, and she really struggled in the environment, as most patients there had anorexia or bulimia, but it was the only option available to us for ARFID children, highlighting the desperate need for specialised support. With sheer determination on her part, she reached the admission goals and was able to be discharged within 12 weeks.
Where We Are Now
Grace’s journey has been long, painful, and full of uncertainty. We all missed her terribly during her inpatient stay, and I know she struggled with the separation. Her brother Daniel was unusually gentle with her—a sure sign that things were serious. Yet, amidst the hardship, there was kindness. Friends rallied together and raised £6,000 through a GoFundMe page to give Grace a holiday to look forward to. Their generosity gave her a focus and reminded us that even in the darkest times, community can bring light.