As a parent of a child with ARFID, I truly tried everything I could think of to help my son. There were many therapy sessions that I brought my son to where he cried and fought going into them. I didn't know what to do. At the time, I thought this was necessary to get him help. What I didn't realize was that there was a reason he was acting this way. These therapies were "activating" my son. And possibly making him worse.
What does "activating" mean? Well, ARFID individuals have a lot of things going on inside of them that many people do not "see" or "understand". They have a nervous system that is not regulated. This means that in "flight or fight" mode, they go in to "freeze". They shut down and go numb - literally frozen to the fear of eating a new food. Because they are "frozen", we don't necessarily see it - they are just numb and their nervous system is stressed. This stress triggers an adrenal overload, which leads to an overabundant amount of the stress hormone "cortisol" to be released into the body, and the cycle goes on without the ARFID person ever getting any true rest and relaxation. Even when they are asleep, they are not truly resting. For my son, his cortisol overproduction shows up in his skin. He looks like he has eczema all over his body. This is from too much cortisol with no where to go. He also has trouble sleeping through the night, he wakes up several times and never really "rests".
ARFID is a sensory disorder. It is not cognitive. This means that the therapy for ARFID individuals should not be one such as Cognitive Behavioral Therapy or "talk" therapy. ARFID individuals absolutely WANT to eat the foods they can't, so talking to them about it or developing Behavioral Integration Plans with "reward/punishment" do not work. Dr. Kim explains in her training workshops that ARFID individuals fear "dying" if they eat certain foods, so there is no "one thing" that you can offer them as a reward that will be significant enough to overtake the fear of dying away from them. Therefore, they simply choose to not eat it and give up the reward, because then (in their minds) they will not die. Not only that, as a mother, it seems awfully cruel to me to offer my son a reward that I know he cannot possibly receive until his ARFID is gone.
ARFID individuals also have extremely heighten senses. They have super hero senses. My son can smell something from far away. He can also hear things I can't hear. It's my belief that ARFID individuals, in the animal sense, are always on "highest alert" and therefore their senses have had to adapt at a much higher level in order to protect themselves. Imagine how an ARFID individual feels when they have to walk into a therapy room where they know there will be food. How terrifying for them. I did this to my son for many years (SOS therapy), because I simply did not understand that when he could smell, see, or even just "think" about there being food in the room - HE WAS BEING ACTIVATED. His nervous system, at that moment, would go into "freeze" and he would go numb. He would panic and shut down and then his insides would fire up the adrenals, cortisol, and all of the negative implications that come with that. So, this would explain why he cried and panicked and begged not to go to the sessions where he was being exposed to food. This kind of therapy is called "Exposure Therapy" and is used in "SOS (Sequential Oral Sensory) Therapy" approach. SOS never worked for my son and turned him off from many foods, even the ones that he was able to eat. Not to mention how it must have made him feel to be presented with the one thing he feared most.
There are so many therapies available now for eating disorders. ARFID is different from all other eating disorders and picky eating as well. Because it is so different, the treatment MUST be different. The treatment must be gentle and not activating. There should not be food in the sessions, because this activates them, right? The treatment should begin with first calming and regulating the dysregulated nervous system. Then identifying which foods are "openings" for that person. Finally, imagining being near the food, then imagining putting it in their mouth, then finally swallowing it." If they are successful at doing this in a calm and regulated manner, then they are ready for the real food.
There are many treatments out there that are now being called ARFID Therapy. I encourage parents to ask a lot of questions and really understand what the therapy entails before bringing your child into that situation. It is important to make sure they will not be activated and the situation made worse. I will be creating a set of questions for parents to ask during intake that will help you understand the treatment you are looking into. I will be posting that on this website shortly. If parents have any questions, please ask through my CONTACT page and I am happy to help out!
UPDATE: I created the Parent Questionnaire and posted it on my Resources page for download - Parent Questionnaire
I am an ARFID Mom. I am the mother of a 12 year old boy with Avoidant/Restrictive Food Intake Disorder (ARFID). I have become the "expert" on my son's feeding issues. I am here to share what I've learned.