ARFID in Autism: An overlooked feeding disorder and hidden health crisis

ARFID – The Hidden Nutrition Crisis in Autism

Avoidant/Restrictive Food Intake Disorder (ARFID) is emerging as one of the most serious health issues in children with Autism Spectrum Disorder (ASD). This is not just a case of picky eating, nor does it usually occur with weight or growth concerns. For many (particularly with complex Autism), it is a persistent, treatment-resistant problem that appears to increase the risk of life-long psychiatric and health consequences from a well-hidden mixture of multiple chronic nutrient deficiencies and a high dependence on ultra-processed foods (UPFs) that span a decade or two of the most crucial years of physiological and social development.  

Chronic nutrient deficiencies and diets high in UPFs are a near-guaranteed recipe for a constellation of inner health problems throughout life. They silently impair neurodevelopment and the daily functioning of brains and all physiological systems.  They significantly increase the risk of: learning and behavioural difficulties, lifelong mental health and psychiatric disorders, multiple types of cancers (linked to diet), gastrointestinal issues, cardiometabolic decline (obesity, diabetes, early onset pancreatic fatigue), cardiovascular disease, unusual fractures (low bone mineral density), and reduced recovery from infections and illness.  They also have a complicating role in the progression of complex inflammatory and autoimmune diseases.

Recent research reveals that approximately 8-22% of autistic children meet the criteria for ARFID (and possibly up to 33% when including sub-threshold cases). Given this relatively high level of prevalence of ARFID in autistic children, it seems pertinent that more training is necessary for medical practitioners and other healthcare professionals to enable improved screening, along with enhanced referral practices to paediatric dietitians who have relevant expertise.

Despite the severely limited variety of foods in their diet, children approaching my clinic generally do not have doctors who have recommended or actively referred them to a paediatric dietitian (the mantra seems to be, “if they are growing, they will be ok”). On occasions when doctors have recommended a dietitian, children are presenting to my clinic with a progressed state of nutrition-related clinical issues; typically, they have already missed years of essential nutrition. They have been experiencing a hidden nutrition crisis – overlooked, diminished or dismissed - which has silently and gradually impacted their development. Their overlooked feeding problem has also embedded an increased life-long risk of future chronic health problems. 

We need to do better.

We need radically better screening of ARFID in Autism, but there is a twist.  ARFID in Autism (what I call, ARFID-ASD) is not the same as ARFID.  The mechanisms of ARFID-ASD are more complex and varied.  In my experience, the presentation of ARFID in ASD is also typically more severe. And, it is frequently treatment resistant with a long trajectory of poor recovery, at least until the early adult years. Crucially, children with ARFID-ASD require better initial screening by general medical practitioners and paediatricians, who then refer to practitioners with specialist skillsets in ARFID-ASD and nutrition rescue.

A nutrition rescue approach, provided by qualified paediatric dietitians experienced in advanced medical nutrition prescription practices and neuro-affirmative care, is a lifeline that can significantly improve lifelong outcomes for children with ARFID-ASD — and reduce the economic and social burdens of predictable healthcare issues that lie ahead.  A nutrition rescue approach is a nutrition-first approach, rather than a food-first approach.  Nutrition rescue also means meeting all essential nutrition requirements by providing a comprehensive nutrition strategy, not just a patchwork of several nutrients. It is also grounded in high standards of evidence-based clinical practice, 

So, What is ARFID? | Diagnostic Criteria You Should Know

Formally recognised in the DSM-5 (APA 2013) and DSM-5-TR (APA 2022), ARFID is characterised by persistent restriction or avoidance of food that results in one or more of the following:

1. Significant weight loss or poor growth
2. Nutrition deficiency, confirmed biochemically and/or clinically
3. Dependence on nutrition supplements or enteral feeding
4. Marked interference with psychosocial functioning, such as family stress or school limitations

Unlike anorexia nervosa or bulimia, ARFID is not motivated by body-image concerns. It usually presents through one or more overlapping profiles:

• Sensory-based avoidance: strong reactions to taste, texture, smell, or temperature
• Fear-based avoidance: conditioned avoidance due to choking, gagging, or illness
• Low-interest type: muted hunger signals or interoceptive dysfunction

Autistic children most often fall under the sensory-based profile.

An ARFID diagnosis must also rule out that the pattern of avoidant/restrictive feeding is not due to cultural practices (e.g. religious fasting, or extreme dietary regimes), food insecurity or a co-occurring medical diagnosis that may be reasonably expected to cause restrictive feeding (e.g. irritable bowel syndrome, reflux, allergies, cancer).

Understanding Autism and Its Connection to ARFID

Autism markedly amplifies ARFID through heightened sensory defensiveness, cognitive rigidity, an overactive threat response, demand avoidance traits, poor predictive processing, and reduced hunger or thirst awareness from diminished interoception, alexithymia and dysautonomia.  Poor clinical awareness of these phenomena contributes to underdiagnosis and either delayed or unsuitable interventions.

ARFID-ASD is commonly further complicated when associated with ADHD and an almost inevitable presence of secondary issues such as constipation/diarrhoea, gut microbiome dysbiosis and disruptions to the gut-immune-brain axis. 

ARFID-ASD gets even more complex when it coincides with food allergies and intolerances, Mast Cell Activation Syndrome (MCAS), hypermobile Ehlers-Danlos Syndrome (hEDS), Eosinophilic oesophagitis (EoE), genetic neurological disorders (e.g. Xq28), or various autoimmune and neuropsychiatric disorders (e.g. PANDAS).  

For some, ARFID-ASD overlaps with not just one of these issues, but several. This becomes a supercluster of multiple, co-occurring diagnoses that profoundly compound one another. Clinically, these supercluster kids present with a highly complex constellation of issues when attempting to diagnose, treat and provide supports for improved daily functioning and wellbeing. My clinic is full of these supercluster kids.

The Clinical Implications of ARFID-ASD

In ARFID-ASD, the amplifying mechanisms associated with Autism and the typical presence of additional complicating factors, make ARFID more complex than most clinicians currently recognise. 

ARFID-ASD often involves an interplay of overlapping mechanisms that necessitate a comprehensive understanding of diagnostic and treatment frameworks, grounded in a strong foundation in complex systems medicine and an empathetic appreciation of neuro-affirmative care. 

We need medical practitioners and other clinicians to grasp that conventional feeding or exposure-based therapies are rarely effective for this cohort of kids, and that severely restrictive feeding is likely to be a very long-term problem. This means that practitioners need to refer families to experienced paediatric dietitians for advanced medical nutrition therapy and avoid perpetuating simple fixes such as:

• “He will grow out of it eventually.  It’s just a phase of picky eating. There is nothing to worry about.”
• “Your child is growing fine (on the growth charts). There is no problem.”
• “Let’s make sure we get some extra iron into their routine with an iron supplement.”
• “Your child’s pathology results don’t show any deficiencies in iron, folate or B12, so you have nothing to be concerned about."
• “If they are drinking Up&Go (or similar) every day, they will be getting enough nutrition for now.”  
• “Just keep providing regular exposure to fruits and vegetables and they will eventually start eating them.”
• “Don’t keep providing their preferred foods until they eat healthy family foods.  If they get hungry enough, they will eat anything.”
• “You need to persist with SOS (or similar) feeding therapy. Eventually, they will start eating fruits and vegetables.”
• “Let me teach you about feeding your child ‘the rainbow colours’ every day…”
• “We just need to adjust their anxiety or ADHD medications and eventually they will start eating a wide variety of healthy foods.”

All of these are usually wrong, with detrimental consequences for childhood development, daily functioning and an elevated risk for early adult onset of life-long problems (chronic health disease, psychiatric disorders and cancer). This is particularly true for all the children in my clinic who present with severe ARFID-ASD. 

Unfortunately, these types of responses (above) still dominate the majority of clinical advice given to parents. Every week of the year, I continue to witness this trend via online groups and through the influx of new inquiries arriving at my clinic. It remains a pervasive problem that highlights the need for further training of medical practitioners and other healthcare professionals, including dietitians.

Conclusion

ARFID-ASD is a pervasive problem that affects up to 22% of autistic children. When feeding problems are overlooked or dismissed, diets high in UPFs with multiple nutrient deficiencies have detrimental consequences for childhood development, daily functioning and an elevated risk of life-long psychiatric dysfunction, chronic health problems and cancers. Failure to screen, refer and provide nutrition rescue generates a hidden nutrition crisis that silently erodes mental and physical health during the first decade or two of the most important developmental years, physiologically and socially.

Medical practitioners and other healthcare practitioners need training to improve initial screening and referral of children with ARFID-ASD.  In the meantime, parents may need to educate their child’s clinicians and seek out appropriate support. While awareness of the definition and diagnostic criteria of ARFID is a good starting point for clinicians and parents alike, we also want to cultivate a much better understanding that Autism markedly amplifies ARFID through heightened sensory defensiveness, cognitive rigidity, an overactive threat response, demand avoidance traits, poor predictive processing, diminished interoception, alexithymia and dysautonomia.  This will often mean that practitioners need to refer children to other clinicians with advanced knowledge in diagnostic approaches and treatment pathways for ARFID-ASD.

When children get early access to nutrition rescue, through a neuro-affirmative nutrition-first approach, we can often correct deficiencies in energy, protein, essential fatty acids, vitamins, minerals, prebiotic fibres and fluids. A nutrition rescue approach enables us to modify multiple factors that impact child development outcomes, daily functioning, and some types of clinical problems.  Access to nutrition rescue also means we can modify the life-long risk of psychiatric dysfunction, chronic disease and various cancers.

Finding a Registered Paediatric Dietitian:

Looking for a registered paediatric dietitian?  Here are links to the national professional organisations that accredit and register dietitians.

• Australia: www.dietitiansaustralia.org.au
• Canada: www.dietitians.ca 
• Denmark: www.kost.dk 
• Finland: www.rty.fi 
• France: www.afdn.org 
• Germany: www.vdd.de/english
• Greece: www.hda.gr 
• Hong Kong: www.hkda.com.hk 
• Ireland: www.indi.ie 
• Italy: www.asand.it 
• Japan: www.dietitian.or.jp/english
• Malaysia: www.dietitians.org.my 
• Mexico: www.cmnutriologos.com 
• New Zealand: www.dietitians.org.nz 
• Norway: www.matomsorg.no 
• Singapore: www.snda.org.sg
• Sweden: www.kostochnaring.se 
• UK: www.bda.uk.com 
• USA: www.eatright.org

Use this link to find national organisations that register and accredit dietitians in other countries: https://internationaldietetics.org/ndas/ 

Stay tuned for a future article on choosing the right paediatric dietitian for your family. Children with complex presentations of ARFID-ASD need paediatric dietitians with specific types of experience and expertise. Read more in a future edition of my newsletter.