What is the "All About ARFID" newsletter?
Extensive experience in severe ARFID with Autism.
Photo by Brett Jordan on Unsplash
I am on a mission with this newsletter.
For a start, I hope the All About ARFID newsletter helps set the record straight. First, ARFID in complex Autism (ARFID-ASD, as I like to call it for brevity) is not quite the same as ARFID (as a single diagnosis). Second, we cannot leave nutrition deficiencies untreated without significant consequences. This lack of understanding remains as an all-too-common barrier to treatment.
How do I know?
Regardless of age, or treating doctor, no child who arrives at my clinic is getting the minimum essential nutrients they need for brain development, growth, and long-term health. Not one, single child. The treatment gap is staggering.
Instead, these children are often living on only 5-10 ultra-processed foods in their diet – without any vegetables, legumes, fruits, seeds and nuts - and without any suitable supplemental nutrition products. They are profoundly deficient.
Or, they are dependent on a few foods and a single nutrition product (such as Up&Go drinks), which is unsuitable and leaves many hidden nutrient deficiencies running wild; impairing brain development and function. Overuse (excessively high dependence) on nutrition products like these may also a cause of micronutrient toxicity disorders, an increasingly frequent problem with damaging consequences.
Or, parents have been told to continue food exposure therapy at home each night (“why don’t you taste this vegetable today”). Or, they have been told to try ARFID-CBT (cognitive behavioural therapy), or ARFID hypnotherapy, or SOS feeding therapy. Over three decades, I am yet to see any of these strategies work in my clientele of children with severe ARFID-ASD. Again, ARFID is not ARFID-ASD.
ARFID-ASD is also not ‘picky eating.’ Families are regularly advised by their doctor that their child will eventually grow out of ‘picky eating’, and there is nothing to worry about because they are ‘growing.’ This advice remains the prevailing norm; I hear it over and over again from families reaching out to me every week. But, ARFID-ASD is not picky eating.
And, in all of my experience, kids usually won’t simply “grow out of” ARFID-ASD (restrictive feeding) before they reach early adulthood.
And, finally, kids won’t simply “be ok” from chronic deficiencies of essential nutrients. There are substantial lifelong consequences from ignoring nutrient deficiencies that are silently impairing development and crucial physiological functions (deficiencies in essential nutrients cannot wait for 2, 5, 10, 15 or 20 years; they need treatment now). Every biochemical pathway in the human body depends on vitamins, minerals, trace elements and amino acids. As I say to parents and doctors, anything else is ignorant, wishful and magical thinking.
Yet, it really doesn’t need to be like this for many of these children and families.
Despite their severe sensory sensitivities, very rigid food preferences, and other challenging traits, I know (from decades of experience) that there are often things we can do to improve these kids’ nutrition, which will improve their daily functioning and health outcomes, both in the short term and over the long term. It surprises parents (and doctors), but much is often possible.
Therefore, I want this newsletter to provide parents (and clinicians) with fresh insights on how to assess, understand, support, treat, evaluate, and monitor the many nutrition-related complexities associated with ARFID-ASD.
The newsletter will offer a blend of practical wisdom from decades of clinical experience working with parents and kids in hospitals and clinics, woven together with modern research and evidence-based protocols.
It will equip parents with tools for conversations with doctors and pharmacists.
I hope it will also help grandparents, uncles and aunties, and educators at kindergartens and schools to much better understand the nature of ARFID-ASD.
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What else to expect from the newsletter?
Hopefully, a little flair – peppered with colour, imagery and art - and lots of variety. I want this to be a little bit more than just technically useful. Maybe it will provide a moment of inspiration and restoration, while digesting an array of challenging topics on nutrition and medicine, in the midst of your busy life!
I am also going to have a little bit of fun with different forms of writing…
The forms of writing will be mixed, mostly brief (I know you are busy), with short educational articles.
However, over time, the newsletter will also be threaded with longer patient-focused stories about navigating more complex problems that dominate the lives of so many kids in my clinic. ARFID-ASD gets complicated when kids have multiple other diagnoses (the super clusters).
Occasionally, I will include longer-form journalistic essays and perhaps an attempt visual storytelling essays.
Along the way, please tell me what forms of writing you like, and I will adapt as we go.
This year, I will also endeavour to deliver the newsletter in an audio, podcast-style version for easy listening while on the go. If you are like me, a podcast while running about in the car is a great way to soak up some extra learning.