Assisting autistic people with feeding problems
Dr.
Elizabeth Shea is a Clinical Psychologist with over ten years of experience
working with young people who have eating disorders. Problems eating a wide
variety of foods are prevalent in autistic persons, and this article covers the
elements that have a role in the onset and maintenance of this eating pattern
based on clinical experience, evidence-based treatment, and research.
"Chocolate the crispy cake is my favorite dessert. They're only good to me when they're
melted. I'm not interested in trying new foods since I'm afraid they'll make me
sick. I only eat crunchy foods. I have a cake on my birthdays, make a wish, and
blow out the candles, but I've never tried it. I had a teeny-tiny crumb of
birthday cake once, but it made me sick."
Rachel is six years old
Rachel's
statements will ring true if you've ever encountered a young autistic person
who struggles with food. When I worked as a residential care worker for
autistic young people, I first saw the normal eating style of autistic persons.
It was my job to cook supper most evenings, and I quickly learned that some of
they had extremely specific preferences, such as rejecting anything that was
the incorrect brand or packaged differently (I also learned to cost the
consequences of hiding or disguising foods; more of that later).
I've spent a lot of my career working with young kids who refuse to eat, many of whom are on
the spectrum, but also with those who aren't. As a result, "the pattern of
avoidant and restrictive eating seen in autistic people is also seen in
children and adults in the neurotypical population, and thus indicates the function of features that individuals share, rather than being particular to a
diagnosis".
So, what are
these characteristics, and how do they relate to an autism diagnosis? Historically,
eating problems in autistic people were thought to be predominantly behavioral,
either as a result of parental management or because of the condition's
repetitive behaviors. We can alternatively investigate the role of other
factors by using clinical and scientific data from the development of eating
and food acceptability in neuro-typical youngsters. These are a mix of
inherited and acquired qualities that, when combined, cause and perpetuate an
avoidant and restrictive eating pattern.
Sensitivity to the senses
The
diagnosis of 'Avoidant and Restrictive Food Intake Disorder' describes the
selection (or rejection) of foods based on sensory features. Autistic people
have dramatically different sensory experiences than neurotypical people,
including both hyper and hyposensitivity. In terms of eating, this entails
being more or less sensitive to the way foods:
- Look
- Smell
- Taste
- Feel
Other
sensory systems that are required for feeding include:
proprioception
is the sense of one's own body (body awareness)
Interception,
in particular, facilitates the identification of hunger and satiety, both of
which are frequently reported to be impaired in autistic people.
Meals with a
similar textures, such as soft or hard/crunchy foods, are usually preferred by
autistic children. Some children's eating problems appear during the second
stage of weaning (7-9 months), when textured and lumpy foods are introduced.
These foods will make children with tactile or touch hypersensitivity gag, spit
out, and refuse to eat them.
Such sensory
avoidance might lead to a long-term dependency on first-stage weaning foods,
such as smooth purees or foods that bite and dissolve quickly in the mouth (4-6
months). As a result, weak oral-motor skills may emerge, thus perpetuating a
preference for smoother textures. Hyposensitivity and sensory-seeking
behavior is common in children who enjoy crunchy meals. Pica, or the eating of
non-foods, may emerge as a result of such responses.
Factors affecting the mind
Differences
in the way, autistic people's brains process information have also been
recorded, which may assist to explain other aspects of their diet. For example,
cognitive rigidity and the "need for sameness" may lead to a strict
adherence to specific eating routines or rituals, such as using the same
utensils every time, with the context being the most important indicator of
whether a food is safe.
The vestibular system (balance)
Interception
is a term that refers to the ability to (awareness of internal states).
The Central
Coherence Theory, which states that information is fragmented, could explain
why young kids notice the ‘local' characteristics of a dish, such as a black
spot on a crisp, over the ‘global' or overall appearance of the item. This
could also explain why meals are rejected when the packaging is altered.
By the age
of two, most children have developed a pattern of food refusal, and by school
age, the number of meals taken on a regular basis has decreased to as few as
5-10. These are typically foods from perceptually similar groups, such as
‘beige carbs,' such as:
- Bread
- Pasta
- Crisps
Alternatively,
dishes have comparable textures and consistency, such as:
- Smooth yogurts with no chunks
- Buttons made of chocolate
Frequently,
entire food groups are eschewed, such as meat, fruit, and/or vegetables. This
could be due to the fact that they show samples of foods that are visually very
different. When a youngster has trouble categorizing objects or generalizing
within categories (as tends to be the case with autistic children), he or she
is more likely to stick to food groups that look similar. Furthermore, when a youngster is nervous, cognitive rigidity increases, making the food category
expansion much more difficult.
Food phobia is a fear of eating
certain foods
Food
rejection becomes increasingly common between the ages of 18 and 24 months.
Neophobia (fear of the unknown) is a stage in the development of food
acceptance in which children reject foods that they haven't seen others eat.
This is an adaptive reaction that protects youngsters from ingesting
potentially harmful foods once they are mobile. Neophobia usually disappears
when:
- Age
- The act of imitating others' eating
- Cognitive categorization is a process that takes place over time.
However,
because of their social and cognitive impairments, autistic people's neophobia
lasts far longer, as seen by their continued rejection of new or perceptually
dissimilar foods.
Anxiety, revulsion, and contamination
are all symptoms of contamination.
In autistic
persons, anxiety about what will happen during or after eating, such as whether
the food will be ‘ok,' being sick or choking, especially in eating scenarios
outside of the home, is prevalent. There are also a lot of disgust and
contamination reactions.
Assume I
sandwich a sheep's eye between two slices of bread and present it to you as a
"great, tasty sandwich." Your disgust reflex will most likely be
triggered, and it's unlikely that you'll be able to put it in your mouth, let
alone eat it. This is, once again, an adaptive response to foods (or non-foods)
that could be harmful if consumed. Even if the meals are socially and
culturally suitable, young autistic people often exhibit this response when
confronted with novel or unpleasant foods.
During my
time cooking for young autistic persons, I learned the hard way about
contamination responses. I added butter (an unusual cuisine) to mashed potato
because I thought it would be beneficial to one young man in particular (a
liked food). Unsurprisingly, he rejected it at first glance, even before
tasting it. Unfortunately, contamination is a one-way street; you can't make a
new meal more appealing by mixing it with something you already like.
Interventions
"I
don't eat that kind of food of my own volition. It isn't because I'm being
clumsy. I'm constantly afraid of trying new foods."
Rachel is 13 years old
Rachel was
13 when I first met her. She had been diagnosed with autism at the age of three
and had a lengthy history of eating problems. When I met her, she was only
eating one type of chocolate biscuit (and packaging), one type of breakfast
cereal dipped in melted cooking chocolate, and one type of bite and dissolve
crisp. Despite this, she was growing normally, was healthy, and did well at
school.
These are
common clinical findings, which raises the question of why you should
intervene. All one needs to do is listen to families to get an answer. Parents
nearly universally cite limitations in family life and concerns about acquiring
their child's favorites meals; young people express concerns about being
different and fitting in, which is already challenging for autistic people.
The risk of
interference in an individual's well-being and/or social life is also
highlighted by diagnostic criteria. All of this lays a solid foundation for
aiming to broaden the range of meals consumed while also reducing anxiety related to foods and eating circumstances
Allowing a
child's chosen and safe foods are the initial, and possibly the most crucial, intervention
before attempting to expand their range. This will keep your weight and growth
in check. Following that, a new food, preferably one with some inherent value,
can be introduced. This was toast for Rachel, a common breakfast item that she
might consume after a sleepover. Consider the delectable sheep's eye sandwich
once more, and what you'd have to do to consume it. This will give you a sense
of how difficult it was for Rachel to overcome her fear and distaste at the
prospect of eating toast.
Rachel was
able to lessen her nervousness by using relaxation techniques right before
attempting a tiny piece of toast and after several trials (at least 10-14
times), toast became a regular part of her diet.
This
treatment is clinically beneficial, especially in children who are older and
more cognitively capable. Other solutions are required for some autistic people
who has a varied level of functioning? These include matching a new food with
a new environment, such as a new class at school (where both the food and the
context appear to be stored as one "whole" experience), or using
sensory integration and/or desensitization techniques to reduce the impact of
hyper or hypoglycemia.
Rachel
continued to work on broadening her diet, and at the age of 15, she ordered
meals from a restaurant menu for the first time, an experience she and her
parents had never anticipated. She now has a variety of foods that she may
enjoy with her pals at university and that does not make her stand out. Rachel
will always have a limited diet due to the intrinsic elements that drive eating
in autistic persons, but one that she is now firmly in charge of. Rachel
herself puts it like way:
"I felt
like my diet was preventing me from doing so many things... They were something
I wanted to do!"
Rachel is 19 years old
Acknowledgments
Rachel and
her family, as well as the other young people, their families, and groups of
parents and professionals who contributed to clinical and research data and the
creation of these ideas, owe me a duty of gratitude. In addition, I'd like to
thank Birmingham Food Refusal Services' Dr. Gillian Harris and Sarah Mason for
their knowledge, supervision, and support.
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