Our Journey with Autism and Avoidance Restrictive Food Intake Disorder

It's been a while! Life got busy, and I stopped writing. A lot has happened!! JC is now 10 and he has worked hard to overcome so much of what he struggled with as an infant, toddler and young child. Food, on the other hand, continues to be a huge issue. A few years ago, he was diagnosed with a relatively new eating disorder known as ARFID (Avoidance Restrictive Food Intake Disorder. As it is such a newly recognized disorder there aren’t many treatment options. Especially because he also has Autism, Anxiety and suspected PTSD and OCD. Jaxson began refusing food at 14 months old. Coincidentally that’s when I was undergoing chemo for Ovarian Cancer. All of the specialist believe it was a combination of sensory issues, digestive issues (with vomiting constantly and bloody stools), combined with a need to add a level of control to his chaotic life during that time that made his brain determine that food is harmful, and only certain familiar foods are “safe”. By the time we were able to determine the source of his digestive issues (food allergies) and fully understand his sensory issues, the damage had been donw. It isn’t about preference. It’s about survival for his brain. He literally panics, curls in a ball and shakes if we present new foods. It’s is a phobia, resulting from trauma related to food. We’ve tried sensory therapy, feeding therapy, cognitive therapy. We even went to an eating disorder center, who told us they can’t help him until the anxiety is under control (umm. Isn’t that what you are supposed to help with?!?) We tried to get into a study at Harvard, but they wouldn’t take him because he has Autism. Another study refused him because he is not underweight. It feels like everything is a dead end, meanwhile he lives on a handful of foods and a nutritional supplement drink. We recently tried what felt like our last hope. A specialist in the UK has the highest success rate of anyone, and he provides virtual therapies. We finally had success! It took a lot of planning, dedication and flexibility - but JC tried 20+ new foods in a 6-8 week period!