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This newsletter is all about understanding and managing severely restrictive feeding habits associated with Autism Spectrum Disorder (ASD).  Most of the kids in my clinic eat less than 10 different types of foods, most of them have no fresh plant foods in their daily diet, and they are almost entirely dependent on ultra-processed foods. If this is your child, then this newsletter is for you.

For now, this feeding issue is commonly known as Avoidant/Restrictive Food Intake Disorder (ARFID).  I call it ARFID-ASD, which is an informal, abbreviated term; it is not official terminology. However, I prefer the term “ARFID-ASD” because it helps us distinguish this problem from “ARFID” as a single diagnosis.  

As I argue in my blog posts, while ARFID and ARFID-ASD have overlapping features in presentation and mechanisms, there are additional complexities when ARFID is associated with complex Autism (i.e. ARFID-ASD).  Perhaps in the future, we will have different terminology for ARFID when it is associated with complex Autism.  For the moment, we can call it ARFID-ASD.

I know it is (very) difficult to find and access expertise in ARFID-ASD. Therefore, I hope this newsletter and the Learning Labs provide you with plenty of resources to support your child; it is typically a very long, challenging journey of restrictive feeding that lasts into the late teens or, more likely, into early adulthood.  

In the meantime, we can’t wait.  Kids need better nutrition now, not in 15 years’ time. Without it, there are consequences for brain development, daily functioning, gut health, lifelong mental health problems, and a very high risk of adulthood with chronic disease and cancer.

As you will learn through the newsletter and Learning Labs, some of these issues are preventable. The Nutrition Rescue approach provides parents with tools and methods (designed for extremely rigid and sensory feeders), which significantly improves nutrition status, supports brain development and reduces the risk of many future health problems.

The Welcome Emails

Hopefully, you have read the first five emails sent to your inbox. They provide helpful background and introductory concepts for this newsletter. If you need to access them, we have provided them again here as links for your convenience: 

• Email 1: Welcome to the Newsletter
• Email 2: Meet Michael
• Email 3: What is the Nutrition Rescue Newsletter?
• Email 4: What are Learning Labs?
• Email 5: It’s a Collaboration

A few summary notes from these first five emails:

1. The Nutrition Rescue approach is not about adding more or new foods; and nor is about food exposure or conventional feeding therapies. Instead, it is about a “nutrition-first” approach, which usually means advanced medical nutrition therapy with specialist nutrition supplements, including retail and prescription products. Much is possible with advanced knowledge of these products and how to gradually introduce them to kids with very restrictive and rigid food preferences associated with Autism.

2. The newsletter will contain a variety of short and long formats to meet the different needs of parents.  Some of it will be directly relevant; some won’t. Read what you want; ditch the rest.

3. Soon, we will provide audio options for listening to newsletter articles, on both the newsletter website page and via the Nutrition Rescue app.

4. This newsletter project is a collaboration between you and me.  So, if you have questions, please tell me, and I will do my best to address them over the months ahead.

5. Stay tuned for opportunities to attend a Learning Lab, a highly interactive webinar workshop designed for parents that offers step-by-step problem-solving methodologies, group coaching and real-time feedback so that you can create individualised solutions for your child at home.  Each Learning Lab will focus on a particular problem. For most parents, the methods used in the Learning Labs make a significant difference in their child’s nutrition (and, in turn, their daily functioning and long-term outcomes).

The Blog: A vital resource for parents and doctors

I have written three blogs, which are best read as a mini-series of three short essays. They are freely available on the Nutrition Rescue website for everyone to read worldwide. 

These three blogs have been written to give parents and doctors a resource that:

1. Blog 1 explains why ARFID-ASD is different to ARFID, and it is not picky eating. There is a profound lack of understanding about the complexity of ARFID-ASD and what this means for treatment.  This lack of understanding remains as a widely experienced barrier to children getting access to advanced care from specialists who have deep expertise in treating the combination of severe ARFID in children with complex Autism.

2. Blog 2 describes why kids and teens with ARFID-ASD ‘will not be ok’ and ‘will not eventually grow out of it’ in a timely way. There are very poor outcomes associated with well-hidden deficiencies and a very restrictive diet dominated by ultra-processed foods. These kids must be treated with a ‘nutrition-first’ approach (because a ‘food-first’ approach involving conventional feeding therapies rarely seems to work in this particular cohort of kids). Without improving daily nutrition, their restrictive diets will create further impairment and have lifelong consequences for psychiatric health, chronic disease and cancers.

3. Blog 3 introduces the Nutrition Rescue approach, including key concepts, phases and primary objectives.  I would like every parent and doctor to understand the basics of this framework.  It will enhance the quality of conversations between doctors and parents, increasing the likelihood of access to advanced care options. 

I invite every parent, general practitioner and paediatrician to read these three blogs. These blogs will help expand the vocabulary that parents and doctors can use together to address issues, investigations, treatment pathways, expectations and outcomes. 

If you haven’t already read my blog posts, then you can find them here.  

Please share this link with your child’s doctors, therapy team, kindergarten, school, and other Autism or feeding groups on Facebook or elsewhere.  

Let’s work together to educate a lot more parents and clinicians on the nature of ARFID in Autism.

Coming Up Next

Here are some themes to expect in upcoming editions of Nutrition Rescue: ARFID, Autism and Desperately Deficient. We are going to cover a lot of territory on how to address tough issues in children with ARFID-ASD:

1. Micronutrients, neurotransmitters, brain function, mood and behaviour

2. Micronutrients, energy metabolism and growth problems

3. Micronutrient deficiencies and harmful toxicity problems

4. Identifying safe and effective nutrition products for children

5. Faltering growth, chronic malnutrition and stunting

6. Persistent fatigue, nutrient deficiencies and energy systems

7. Fluids, chronic dehydration, sleep, fatigue, cardiovascular and brain performance

8. Preventing and managing excessive weight gain in ARFID-ASD

9. Ultra-processed foods, ADHD, mental health and chronic disease

10. Overcoming dependence on formula or meal replacement drinks

11. The gut microbiome, immune systems, inflammation and brain health

12. Advanced nutrition for chronic constipation; much is possible

13. Nutrition pathology, urine biochemistry and stool testing

14. Nutrition and genetics (nutrigenomics) for solving tough problems

15. Tube feeding via gastrostomy (PEGs and G-tubes)

16. Conversation skills and tools for parents and doctors

17. Barriers to care; what to do when doctors won’t listen or act?

18. Navigating flares, developmental regressions and nutrition crises in ARFID-ASD kids with highly complex needs

19. Food connection strategies (that don’t involve eating any foods)

20. Physical activity; a crucial factor in developmental delays, attention, sleep, learning, behavioural regulation and chronic health problems

Til next time,

Consultant Paediatric Dietitian