A few days ago I read a comment from
the parent of an autistic teenager that perfectly illustrates why we should
never assume that a restricted diet is permanent.
Six years ago, their son ate only a
handful of foods. Every meal was a battle. Introducing anything new seemed
impossible. Family meals revolved around avoiding conflict, and eating outside
the home was stressful for everyone.
Today, that same young man eats what
most people would consider a perfectly normal adult diet. Vegetables, fish,
different cuisines and healthy foods that once seemed unimaginable are now part
of everyday life.
Nothing miraculous happened.
There was no breakthrough drug.
There was no secret supplement.
There were simply six years of
patient, structured work by parents who refused to believe that their child's beige
diet was fixed forever.
The journey was not easy. There were
setbacks, disappointments and many failed attempts. Progress was measured in
months and years rather than days and weeks.
But they never stopped trying.
Their story reminds us of something that is easy to forget. Today's diet does not have to be tomorrow's diet
That message is particularly timely
because a major randomized clinical trial from Stanford University has just
provided the strongest evidence yet that parents themselves can play a central
role in helping children with ARFID make meaningful progress.
Three Messages I
Hope Every Parent Remembers
If you read nothing else in this
article, I hope you remember these three ideas.
First, ARFID is
an observation, not an explanation.
It describes a child's eating
behaviour, but it does not explain why that behaviour exists.
Second, ARFID is
a diagnosis, not a prognosis.
Receiving the diagnosis tells you
where your child is today. It says very little about where they could be five
years from now.
Third, parents
are not passive observers.
The strongest clinical evidence we now
have suggests that parents are one of the most important parts of the
treatment.
These three ideas underpin everything
that follows.
ARFID Is a
Diagnosis, Not a Prognosis
Avoidant Restrictive Food Intake
Disorder (ARFID) was only added to the Diagnostic and Statistical Manual
(DSM-5) in 2013. Before then, many children were simply described as
"extremely picky eaters."
The diagnosis has been helpful because
it acknowledges that severe food restriction is a genuine medical and
psychological problem rather than simply bad behaviour or poor parenting.
However, diagnoses can sometimes have
unintended consequences.
Some parents hear the word ARFID and
begin to think that their child's eating habits are largely fixed.
That is understandable, but it is not
what the diagnosis means.
ARFID tells us that eating has become
sufficiently restricted to affect health, growth or everyday life.
It does not tell us why.
Nor does it tell us what the future
holds.
In medicine we often confuse diagnosis
with prognosis.
The two are completely different.
A diagnosis describes today's problem.
A prognosis attempts to predict
tomorrow.
The Stanford study—and many individual
family experiences—suggest that today's eating habits should not be viewed as a
reliable predictor of where a child may be after several years of appropriate
intervention.
Why Expectations
Matter
One lesson I have learned from writing
this blog is that expectations matter.
Not because optimism magically changes
biology, but because expectations influence how much effort people are prepared
to invest.
Autism provides many examples.
Poor handwriting is extremely common.
Motor planning, muscle control and coordination are often affected.
Yet many autistic children spend years
practising handwriting and eventually develop neat, legible writing. The
neurological differences have not disappeared. The skill has improved.
Toilet training provides another
example.
Some autistic children remain in diapers/nappies
or pull-ups for years because everyone assumes they simply are not ready.
Other families invest months—or
sometimes years—using structured toilet-training programs.
Not every child achieves complete
independence or perfect handwriting.
But many achieve far more than anyone
initially thought possible.
Eating should be viewed in exactly the
same way.
It is another developmental skill.
Some children acquire it naturally.
Others require hundreds or even
thousands of opportunities to practise.
Of course, families differ enormously.
Parents working full-time, caring for
several children or home-schooling may genuinely struggle to devote the time
required for intensive feeding programmes.
Those constraints are real and deserve
understanding.
However, where circumstances allow, an
ARFID diagnosis should encourage parents to increase their efforts—not reduce
their expectations.
The diagnosis
should increase expectations for intervention, not lower expectations for
progress.
How Common Are
Picky Eating and ARFID?
Picky eating is almost a normal part
of childhood.
Around one quarter of young children
go through a period when they refuse many foods. Fortunately, most gradually
grow out of it.
Autism is different. Depending on the
study, between 46% and nearly 90% of autistic children show significant food
selectivity.
For some children this simply means
having a short list of preferred foods.
For others, eating becomes so
restricted that nutritional deficiencies develop, weight falters or everyday
family life becomes dominated by food.
This is where ARFID begins.
Rather than being a completely
separate condition, it is often helpful to think of ARFID as representing the
severe end of a spectrum.
Normal childhood picky eating lies at
one end.
Severe nutritional compromise lies at
the other.
ARFID Is an
Observation, Not an Explanation
Perhaps the most important question
parents should ask is not:
"Does
my child have ARFID?"
Instead ask:
"Why
does my child have ARFID?"
The diagnosis simply tells us what is
happening.
It does not explain why.
In autistic children there are often
multiple contributing factors.
Some children have genuine sensory
hypersensitivity.
Textures that seem perfectly ordinary
to us may feel intensely unpleasant to them.
Others have chronic gastrointestinal
discomfort.
Reflux, constipation, delayed stomach
emptying and eosinophilic esophagitis can all make eating uncomfortable.
If every meal is associated with
discomfort, avoiding food becomes entirely understandable.
Children with connective tissue
disorders such as hypermobile Ehlers-Danlos syndrome, or milder extracellular
matrix abnormalities, may also develop gastrointestinal dysmotility, reflux and
abdominal pain. These conditions are increasingly recognised in autism and may
contribute to restricted eating in a subgroup of children.
Oral-motor difficulties are another
overlooked cause.
Some children struggle to chew
particular textures efficiently, making certain foods genuinely difficult
rather than simply disliked.
Anxiety also plays an important role.
A frightening choking episode or
severe vomiting illness can lead to persistent fear of eating.
Finally, nutritional deficiencies
themselves may worsen the problem.
Iron deficiency, zinc deficiency and
other micronutrient deficiencies can alter taste perception, appetite and
energy levels, creating a vicious cycle in which poor diet perpetuates itself.
The important message is this:
Finding one of these biological
problems does not mean behavioural therapy is unnecessary.
It means behavioural therapy is more
likely to succeed once the underlying problem is treated.
Medical treatment and feeding therapy
should not be viewed as competing approaches.
In many children they complement one
another.
Has modern food made
ARFID more common?
One question that is rarely discussed
is whether modern food itself may unintentionally reinforce food selectivity.
Many processed foods are engineered to
be identical every single time.
Every chip/crisp tastes the same.
Every chicken nugget has the same
texture.
Every biscuit/cookie feels identical.
Fresh food is completely different.
One strawberry is sweeter than the
next.
One apple is crisp while another is
soft.
Even two bananas picked from the same
bunch taste slightly different.
For children who crave predictability,
processed foods offer exactly that.
Nature does not.
This raises an interesting
possibility.
Could a highly processed diet make it
even harder for some children to accept the natural variability of real food?
We do not yet know the answer.
But it is certainly an area worthy of
research.
Why dietary diversity
matters
The goal of feeding therapy is not
simply to make the list of accepted foods longer.
The goal is to improve health.
A child who expands their diet from
five processed beige foods to ten processed beige foods has certainly made
progress—but probably not enough.
The greatest benefits come from
gradually introducing foods that provide nutrients missing from the existing
diet.
Vegetables.
Fruit.
Fish.
Legumes.
Nuts.
Seeds.
Fermented foods.
Whole grains.
Each contributes something different.
Dietary diversity also feeds the gut
microbiome.
Different bacteria thrive on different
fibres and plant compounds. A monotonous diet supports a relatively monotonous
microbiome.
Every additional plant food
potentially feeds different bacterial species.
Given the growing evidence linking the
gut microbiome to immune function, gastrointestinal health and possibly even
brain function, this may become one of the most important long-term benefits of
improving diet.
For autistic children, a broader diet
may improve growth, bone health, immune function, gastrointestinal health and
reduce nutritional deficiencies.
The goal is not simply to produce a
child who eats more foods.
The goal is to produce a healthier
child.
When does ARFID become
dangerous?
Not every child who is a picky eater
has ARFID.
Many children survive for years on a
limited selection of foods and continue to grow normally. Although parents
understandably worry, these children often improve naturally as they get older.
ARFID becomes a medical disorder when
food restriction begins to cause significant problems. These may include:
- Poor weight gain or weight loss
- Slowed growth
- Nutritional deficiencies (iron, zinc,
vitamin D, vitamin C and others)
- Dependence on nutritional supplements or
tube feeding
- Extreme anxiety surrounding meals
- Family life becoming dominated by food
The distinction is important because
the goal is not to pathologize every fussy eater. It is to identify children
whose restricted eating is affecting their health or development.
Fortunately, even severe ARFID is
treatable.
The Stanford
Randomized Trial
The best evidence to date comes from
researchers at Stanford University, who recently completed the first large
randomized controlled trial of a treatment called ARFID Parent Training
Protocol (ARFID-PTP).
Rather than providing months of
intensive therapy directly to the child, the researchers trained parents.
This is a subtle but important shift.
Instead of trying to change the child
during a one-hour therapy session each week, parents learn how to create
hundreds of learning opportunities during normal family life.
The study involved 105 children aged
5–12 years with ARFID.
Families were randomly assigned either
to receive the parent-training programme or to continue with usual care.
After six months, the differences were
striking.
Children whose parents received the
training accepted significantly more new foods, had fewer ARFID symptoms and
were more likely to no longer meet diagnostic criteria for ARFID.
Perhaps even more impressive was that
parents themselves became more confident and less anxious about feeding.
The therapy had changed not only
children's behaviour but also the behaviour of the adults supporting them.
That may be one reason it worked so
well.
The Therapist
Becomes the Coach
Traditionally we imagine therapy as
something that happens inside a clinic.
A therapist works with a child while
parents wait outside.
Feeding therapy is different.
The therapist's real job is often to
coach the parents.
Parents are present at breakfast.
Parents are present at lunch.
Parents are present at dinner.
That means they have thousands of
opportunities each year to reinforce progress.
A therapist may only have fifty hours
with a child over an entire year.
Parents may have over one thousand
mealtimes.
Once parents understand the
principles, they become the treatment.
The Stanford study confirms what many experienced feeding therapists have believed for years: empowering parents may be one of the most effective interventions available.
Two
treatments help ARFID, a common pediatric eating disorder, Stanford Medicine
trial shows
To
examine the comparative efficacy of Family-based Treatment for
Avoidant/Restrictive Food Intake Disorder (FBT-ARFID) to individual
Psychoeducational Motivational Therapy (PMT) for underweight children with
ARFID between the ages of 6 and 12 years of age. The main outcome evaluated was
the difference between groups on change in percent estimated body weight (%EBW)
from baseline (BL) to end of treatment (EOT).
Method
Ninety-eight
children with ARFID were randomized to 14 sessions over 4 months of telehealth
FBT-ARFID or PMT. Assessments of weight/height, eating-related cognitions, and
behaviors associated with ARFID were collected online at BL, 1 month, 2 months,
and EOT by assessors masked to treatment condition.
Results
FBT-ARFID
was superior to PMT at the EOT in promoting increased %EBW. There were no
differences between groups on improvements in overall severity of ARFID
symptoms or other related ARFID symptoms; however, BL severity of ARFID
symptoms moderated the effect, with children who were most symptomatic
improving significantly more in FBT-ARFID than in PMT (exploratory analyses).
Conclusion
FBT-ARFID
is superior to PMT for promoting weight gain in low-weight children with ARFID,
especially for those children with greater severity of ARFID symptoms.
What Feeding
Therapy Actually Involves
Many people imagine feeding therapy
consists of persuading a child to eat vegetables.
In reality, it is usually much more
gradual.
A child may first learn simply to
tolerate a new food on the table.
Next they might touch it.
Then smell it.
Then lick it.
Eventually they may hold it in their
mouth before spitting it out.
Only much later do they swallow it.
Each of these tiny steps represents
progress.
Therapists often describe this as systematic
desensitisation.
The child slowly learns that new foods
are safe.
Repeated exposure gradually reduces
anxiety.
The process resembles treatment for
phobias.
Nobody expects someone with a fear of
spiders to begin by holding a tarantula.
Instead, they gradually become
comfortable with increasingly challenging situations.
Eating works in much the same way.
Why repeated exposure
changes the brain
Parents often become discouraged after
offering a new food ten or twenty times without success.
Unfortunately, that may not be nearly
enough.
Research on food acceptance suggests
that some children need dozens—or even hundreds—of exposures before a new food
becomes familiar.
Every successful exposure teaches the
brain something important:
"Nothing bad happened."
Over time, anxiety decreases.
Novelty decreases.
The food becomes part of the child's
"safe" repertoire.
This is why consistency matters so
much.
Small gains repeated hundreds of times
eventually become major changes.
The six-year success story that opened
this article probably consisted of thousands of tiny victories that, on their
own, hardly seemed worth celebrating.
Together, they transformed a life.
Case histories teach
us what clinical trials cannot
Clinical trials tell us what usually
happens.
Individual families remind us what is
possible.
The parent whose story inspired this
article did not achieve success in six weeks.
They achieved it in six years.
That distinction matters.
Modern medicine often expects rapid
results.
Parents understandably hope that one
supplement, one therapy or one new technique will produce dramatic improvements
within a few months.
Development rarely works that way.
Children learn through repetition.
Brains change through repetition.
Skills improve through repetition.
Eating is no different.
Some children will improve quickly.
Others will take years.
The important thing is that progress
remains possible.
Progress Is
Measured in Years
One reason families abandon feeding
programmes is that they judge progress too soon.
Imagine expecting a child to learn the
piano after six lessons.
Or expecting fluent reading after one
month at school.
We would never make those assumptions.
Yet many people expect eating habits
to change within weeks.
Instead, it is more realistic to ask:
"Is my child eating more
different foods this year than last year?"
That question shifts the focus away
from daily frustrations and towards long-term development.
The family who achieved success over
six years almost certainly experienced long periods where nothing appeared to
change.
But change was happening.
It was simply happening slowly.
Conclusion
Reading the six-year success story and
then reading the Stanford trial left me with the same conclusion.
Parents matter.
Not because they caused ARFID.
Not because they are expected to fix
it overnight.
But because they are uniquely placed
to help their child improve every single day.
An ARFID diagnosis should never be
interpreted as a prediction of lifelong eating difficulties.
Instead, it should be viewed as the
starting point for understanding why eating has become difficult and for
developing a structured plan to improve it.
For some children, that means treating
reflux, constipation or nutritional deficiencies.
For others, it means addressing
anxiety or oral-motor problems.
For almost all children, it means
creating repeated opportunities to experience new foods without fear.
The therapist may design the
programme.
The doctor may identify underlying
medical problems.
But it is parents who provide the
thousands of moments in which change actually happens.
As the family who inspired this
article discovered, those moments accumulate.
One new food becomes two.
Two become ten.
Ten become a varied and healthy diet.
It may take years.
There will almost certainly be
setbacks.
Progress may be frustratingly slow.
An eight-year-old with a poor diet and
sloppy handwriting can become a teenager with a healthy diet and neat
handwriting. Much depends on empowering parents with the knowledge, confidence
and practical strategies to guide that journey.
As you embark on that journey, choose
your community wisely. Social media can be an invaluable source of shared
experience, but it can also become an echo chamber of low expectations. Look
for communities that acknowledge today's challenges while continuing to believe
in tomorrow's possibilities. Surround yourself with people who encourage
evidence-based action, persistence and hope, rather than resignation.
Today's restricted eater does not have
to remain tomorrow's restricted eater.
