F EEDING AND THE C HILD WITH

A UTISM S PECTRUM D ISORDER

(ASD)

The University of Queensland Royal Children’s Hospital

Brisbane, Australia Brisbane, Australia
 OVERVIEW

1. Diagnosis and 3. Survey of Practice

prevalence of ASD
4. Management
2. Features of feeding
 Assessment
difficulty in ASD
 GI disorders and specialty
 Sensory difficulties
diets
 Motor difficulties
 Therapy tips
 Communication disorder
5. Healthy Eating
 Learning differences Learning Program
 Behavioural difficulties (HELP) study
 DIAGNOSIS OF ASD
 Need for thorough investigation by
paediatrician and preferably other
professionals input before diagnosis
is made
 Diagnosis made based on labelling
and analysis of behaviours
 Proposed revisions to DSM-IV 
currently developing DSM-V – due for
release May 2013
 PREVALENCE OF ASD
IN THE U NITED S TATES

 Between 1 in 80 and 1 in 240 with an average of 1 in 110

children in the United States have an ASD.

 Reported to occur in all racial, ethnic, and socioeconomic

groups, yet are on average 4 to 5 times more likely to
occur in boys than in girls.

 If 4 million children are born every year

36,500 children will eventually be diagnosed with an ASD

730,000 individuals between the ages of 0 to 21 have an

ASD.
http://www.cdc.gov/ncbddd/autism/data.html
 PREVALENCE OF ASD
IN A USTRALIA
Australian Advisory Board on ASD (Wray and
Williams, 2007)

62.5 children per 10,000 with ASD (aged 6-12

years)

1 in 160 children has a diagnosis of ASD

 WHAT IS A ‘FEEDING
DIFFICULTY’?
‘Picky eating’ ‘Feeding Difficulty’

Transient Ongoing

Reduced dietary variety Reduced dietary variety

Still meet nutritional requirements from diet Ongoing food neophobia

Behavioural difficulties at mealtimes

Up to 50% of typically developing children Occurs more frequently in children with a

will experience ‘picky eating’ developmental disability

Carruth and colleagues (1998) Mascola and colleagues (2010)

Mascola and colleagues (2010) Fischer and Silverman (2007)
 W HAT DOES HAVING A
‘FEEDING DIFFICULTY’ MEAN ?

 Lifelong eating habits are formed in

early life
 Short-term problems
 Long-term problems
 Increased risk of adult disease
 Potential damage to parent-child
relationship
 COMMON FEATURES OF
FEEDING DIFFICULTY IN
CHILDREN WITH ASD

Feeding disorders have been observed in children

on the autism spectrum since the earliest
diagnostic descriptions of the disorder by
Kanner in 1943
Twachtman-Reilly, J., Amaral, S., & Zebrowski, P. (2008)
 LITERATURE REVIEW
D IETARY I NTAKE

Dietary preferences (n=26)

25
20
15
10 9
7
5
5 3 2 2
0
 LITERATURE REVIEW
M ICRONUTRIENT I NTAKE
Micronutrient Too much? (n/26) Too little? (n/26)
Fibre - 2
Vitamin A - 2
Vitamin B1 - 1
Vitamin B2 - 2
Vitamin B12 1 1
Vitamin C - 2
Vitamin D - 3
Vitamin E 1 3
Vitamin K - 2
Zinc - 2
Iron - 5
Calcium - 5
Sodium 1 -
 LITERATURE REVIEW
G ROWTH

Growth (n=26) • Does increased intake

of starches, and
25 decreased intake of
20 vegetables have an
impact on
15 overweight/obesity in
10 7 this group?
5 3 3
• Do we see all of the
0 overweight/ obese
children in this group, or
are we more inclined to
see underweight, as
‘more immediate
concern’?
 LITERATURE REVIEW
M EALTIME B EHAVIOURS

Refusal (n=21)
20

15 14

10 8

5 4 4
3
1 1
0
 LITERATURE REVIEW
M EALTIME B EHAVIOURS

Ritualistic Behaviors (n=21)

20
17
15

10
6 7 6
5 5
5 3

0
 LITERATURE REVIEW
M EALTIME B EHAVIOURS

Mealtime Skills (n=21)

20
15
10
5 4 4
1 2
0
 LITERATURE REVIEW
M EALTIME B EHAVIOURS

Maladaptive Behaviours (n=21)

20
15
10
5
5 3 3 2
1 1 1
0
 WHAT ARE THE MOST
COMMON FEATURES FROM
THE LITERATURE ?

 Restricted dietary variety

 Food neophobia (persisting)
 Food refusal based on texture
 Limited fruit/veg intake
 Preference for starches
 High degree of parental stress regarding
balanced intake?
 WHAT ELSE MIGHT
IMPACT?

Sensory
Processing
Disorders

Communication
Motor Difficulties
disorder
Feeding
Difficulties

Learning Behaviour
Differences Difficulties
 SENSORY MODULATION
DIFFICULTIES
 Sensory modulation: allows an
individual to appropriately filter
sensory information
 Dysfunction 
 Hyperresponsivity

 Hyporesponsivity

 Fluctuating responsivity
Lane, Miller & Handt, 2000
 SENSORY MODULATION
DIFFICULTIES
Type of system Hyperresponsive

Auditory Overly sensitive to sound in the mealtime environment

Possible symptoms: Cover ears, anxious, aggression, cry, yell, withdrawn, distracted

Visual Overly sensitive to light and movement in the environment

Possible symptoms: Shield eyes, squint, avert gaze, withdrawn,anxious, distracted
resulting in a reduction in food intake
Gustatory Overly sensitive to a variety of tastes
Possible symptoms: Picky eater, prefer bland flavours,
food refusal, gagging
Olfactory Overly sensitive to smells that others do not notice
Possible symptoms: Picky eater, distressed, anxious, withdrawn
Tactile Overly sensitive to tactile input to the skin and/or oral areas
Possible symptoms: Dislike messiness around mouth, prefer neutral temperatures,
food refusal
Vestibular Overly sensitive to movement or change in head position
Possible symptoms: Poor coordination for utensil use, fearful in unsupported seating

Proprioceptive Over-alert body awareness and grading force

Possible symptoms: Overstimulated during mealtimes; don’t cope with lack of structure
Twachtman-Reilly, J., Amaral, S., & Zebrowski, P. (2008)
 SENSORY MODULATION
DIFFICULTIES
Type of system Hyporesponsive

Auditory Unaware of sounds in the mealtime environment

Possible symptoms: Daydreaming, “spacey,” lengthy meal times

Visual Unaware of relevant or changing visual input in the environment.

Possible symptoms: Over focused on irrelevant visual features of the food or plate,
inattentive to complete meal
Gustatory Poor taste discrimination
Possible symptoms: Crave strong flavours (sour, spicy, etc.),lick or taste inedible
objects, PICA
Olfactory Unaware of even strong environmental odours
Possible symptoms: Disinterested in eating without the enhancement of smell
Tactile Unaware of touch and differences in food textures
Possible symptoms: Unaware of messiness around mouth, over-stuffing or pocketing
food, mouthing inedibles.
Vestibular Seeks high levels of movement input
Possible symptoms: Poor posture, high activity level, fidgety

Proprioceptive Poor body awareness and grading force

Possible symptoms: Messiness, poor gradation of jaw and hand to mouth
movements
 MOTOR DIFFICULTIES
 Some researchers suggest no difference between
ASD and typically developing children in motor
development

 Provost, Lopez and Heimerl (2007) assessed motor

delay in 3 groups of children: ASD, DD and
‘developmental concern’ but no motor delay  ASD
and DD presented with similar patterns of delay
 MOTOR DIFFICULTIES
 Fournier and colleagues (2010) reviewed 83
studies and found children with ASD to have
substantial motor coordination deficits across a
wide range of behaviours
 Toomey (2010) suggested that children with ASD
have:
• Decreased manual imitation (particularly
sequences)

• Decreased oral praxis

• Decreased postural stability

• Unusual posturing (e.g. toe walking)

• Increased repetitive movements

 COMMUNICATION
DISORDER
 Deficits in language comprehension

 Difficulty recognising communicative intent of language

 Poor joint attention and eye contact

 Delayed speech development

 Very literal in interpretation of language

 Difficulties with word-object associations because of

issues with joint attention

 Often have poor social language skills

 Can lead to unacceptable social behaviour, food

refusal in the challenging
environment
 LEARNING
DIFFERENCES
 Children with ASD have a different style of
learning
 Pay attention to microscopic details

 Poor ability to generalise skills to new situations

 Often ‘stuck’ or obsessive ideas (once

something is learnt it is not shiftable)
 E.g. ‘I don’t eat fruit’

 Be careful of your language

 Literal interpretation

 Positive language
 BEHAVIOURAL
DIFFICULTIES
 Behaviour problems are usually a result of
sensory problems, communication breakdown
and/or medical problems
 Ritualistic and repetitive behaviours often
predominate
 Lack of predictability can affect mealtimes

 Children with ASD tend to eat based on external

stimuli e.g. clock rather than internal stimuli  don’t
eat to satisfy hunger

 Fear and anxiety contribute to mealtime

difficulties in children with
and without ASD
 SURVEY OF
PRACTICE
n=150 (96 completed full survey)

Facility Location

Other
6% Hospital Rural/remote
15% area
15%

Private
Practitioner
24%
Community
Health Centre
16% Regional area Metropolitan
28% area
57%
Education
System
10% Disability
Early Services
Childhood 16%
9%
ASD Specific
Centre
4%
WHAT DO YOU MEAN,
RURAL?
 REASONS FOR
REFERRAL
100

80

60

40

20

0
Picky eating Restricted Eating the Unable to Being Being Parents Unusual or Gagging or Only eating Not eating Pica
diet same food at tolerate overweight underweight having ritualistic choking on one food fruit or
every meal small difficulty eating foods texture vegetables
changes to managing behaviours
the maladaptive
appearance mealtime
of foods behaviours
 DIET AND
COMPLEMENTARY
MEDICINE
Gluten-free
never
9%

Gluten-free
in the past
27%
Gluten-free
now
64%

Low food
chemical
and
additive
diet never
Casein-free 9%
Casein-free
never now
35% 37% Low food
chemical
and
additive Low food
diet in the chemical
past and
Casein-free in 33% additive
the past diet now
28% 58%
 DIET AND
COMPLEMENTARY
MEDICINE

Acupuncture
now
Chiropractor
5%
now
23%
Chiropractor
Acupuncture in never
the past 39%
28%

Acupuncture
never Chiropractor
67% in the past
38%
 INTERVENTION
 Frequency
1. Fortnightly
2. Weekly
3. Monthly
 Service delivery options
1. Individual
2. Parent-as-therapist
3. Group
 Most children between 2 & 5 years
 Most children were seen for at least a year
 KNOW LEDGE AND
PERCEIVED THERAPY
SUCCESS

Never
1%
Extensive Limited
3% 4%

Rarely
Generally
5%
Below 10%
average
16%
Comprehens
ive
27%
Often
31%

Sometimes
53%

Average
50%
 MANAGEMENT OF
FEEDING DIFFICULTY

 Medical examination
• Rule out any medical reasons contributing to
food refusal e.g. GOR

 Dietetics consultation
• Determine if the child is growing
appropriately and receiving adequate
nutrition  children with ASD can present as
overweight but malnourished
 MANAGEMENT OF
FEEDING DIFFICULTY

 Speech Pathology Assessment

• Examine oral motor
skills/communication skills

 Occupational Therapy Assessment

• Examine sensory processing and
motor skills

 Psychology
 GI DISORDERS IN
CHILDREN WITH ASD
 Widespread speculation regarding the prevalence
of GI issues in children with ASD
 Black, Kaye & Jick (2002) examined a large sample
and found children with ASD no more likely to
present with history of GI problems before
diagnosis
 Horvath, Papadimitriou, Rabsztyn and Tilden (1999)
reported a much higher incidence of GI issues in
children with ASD.
 Main issue is the difficulty children with ASD have
in communicating gastrointestinal
discomfort
 ALTERNATIVE NUTRITIONAL
MANAGEMENT

Reasoning: Diet causing/exacerbating adverse

behaviours
 Gluten-free casein-free (GFCF) diet
Awareness of these is important as to allow
parents to make the best-informed choice they
can for their child  be wary that you may
need to build up a child’s variety of intake
before you cut foods out
 YOUR ASSESSMENT
SHOULD INCLUDE:
 Full Case History

 3 day diet record

 Food Frequency Questionnaire

 Oral exam (if possible)

 Observation of eating favourite foods

 Observation of reaction to less favoured foods

 Idea of communication skills/level of visual

support required in management
Does your child: Never Rarely Somet Often Always
imes
Cry or scream during mealtimes

Turn his/her face or body away from food

Expel food that he/she has eaten

Act disruptively during mealtimes

Close their mouth tightly when food is presented

Remain seated at the table until meal is finished

Act aggressively during mealtimes

Display self-injurious behaviour during mealtimes

Display flexibility about mealtime routines

Refuse to eat foods that require a lot of chewing

Demonstrate willingness to try new foods

Dislike certain foods and won’t eat them

Prefer the same foods at each meal

Prefer ‘‘crunchy’’ foods

Accept or prefer a variety of foods

Prefer to have food served in a particular way

Prefer only sweet foods

Prefer food prepared in a particular way

 A CTIVITY
Centipede Dog Food Vomit Toothpaste

Strawberry Chocolate Peach Berry Blue

Jam Pudding

Mouldy Baby Wipes Rotten Egg

Booger
Cheese

Buttered
Caramel Juicy Coconut Popcorn
Corn Pear

CONSIDER CONTRIBUTION OF SENSORY PROCESSING!

 T OP T EN T HERAPY T IPS
(1)
Be predictable

 Use visuals to support your sessions

 Pictures to inform of routine

 Pictures to count number of foods

 Schedule a break for sensory work/calming

 Prepare the child with auditory information

 Use transition songs

 T OP T EN T HERAPY T IPS
(2)
Consider contributions of sensory
sensitivities
 Consult your occupational therapist for a sensory assessment
 Provide a ‘sensory warm-up’ prior to treatment to ensure child
is at an optimal sensory functioning level  most ASD
children need calming activities
 Use your OT assessment to guide your
choices in terms of (children with
ASD often hyper but sometimes hypo):
 Auditory Processing
 Visual Processing
 Taste Processing
 Olfactory Processing
 Tactile Processing
 T OP T EN T HERAPY T IPS
(3)
Ensure child is in a posturally stable position
 Ideal position is:
 Feet flat on floor
 Hips flexed at 90º
 Table at elbow height
 Children with additional sensory
requirements may need:
 Move ‘n’ sit cushion  hyporesponsive
vestibular system
 Weighted vest or deep pressure massage
 poor proprioceptive skills
 T OP T EN T HERAPY T IPS
(4)

Always work with hierarchies in mind

 First few sessions will likely be about establishing
and understanding routine (initially you might
need to keep tasks short)

 Work with “food chaining” to select food goals

 Child MUST be processing sensory input of the

task or they will not be learning the action.
 “F OOD C HAINING ”
 Useful for selecting food goals

 Based on child’s natural preferences

 Offer foods which are minimally different from a

sensory perspective

 E.g. McDonalds hot chips  Hungry Jack’s hot

chips  oven baked frozen french fries oven
baked frozen thick chips  oven baked fresh
potato chips  oven baked half potato  baked
potato
H IERARCHY OF S ENSORY
E XPOSURE
Tolerate in the same room
Tolerate on your plate (look)
Smell
Touch with an object/preferred food
Touch with fingers
Pick up
Put on body from back of hand up to face
Put on lips (kiss)
Put on teeth
Put on tongue (snake-lick  big lick)
Hold in teeth
Bite
Bite through and spit
Bite through and chew and swallow
 T OP T EN T HERAPY T IPS
(5)
Consider contributions of motor skills deficits
Once you have built a relationship with the child,
and you understand their motor capacity, you
may need to assist with:
 Initiation

 Sequencing of the task

Child MUST be processing sensory input of the

task or they will not be learning the action.
Toomey (2002/2010)
 T OP T EN T HERAPY T IPS
(6)
Be totally in tune with the child’s sensitivities and
stress cues before you begin challenging them

 Some stress cues might include:

 Finger splaying

 Running away or becoming aggressive

 Changes in breathing pattern

 Shrugging of shoulders

 Grimaces

 Shutting eyes/turning away

 T OP T EN T HERAPY T IPS
(7)
Break ‘food jags’ (Toomey, 2010)
 Start to address this issue after 6-8 weeks of therapy 
you need to understand how much change the child can
cope with
 Make small but noticeable changes with warning to
familiar foods
 Shape  Colour  Taste  Texture
 Try combining a familiar food with a new food e.g. Dips
 Child should ideally not be eating the same food at the
same meal every day
 T OP T EN T HERAPY T IPS
(8)
Move Slowly!

 Make sure parents are aware from the outset

that these children can be very slow to change

 If you try to move too fast, you will likely

jeopardise your progress!
 T OP T EN T HERAPY T IPS
(9)
Provide parent education and support simultaneously

 Educate parents about sensory processing, oral motor

skills, mealtime behaviours, appropriate diet and WHY
their child is behaving the way they are i.e. Not just
being naughty!

 Encourage parents to make

food and interaction with food
a part of daily routine at home

 Encourage family to change at least one small piece of

the environment to consistently make the sensory
system work to be adaptable
 T OP T EN T HERAPY T IPS
(10)
Always consider generalisation and be
working on this
 Make small but noticeable changes to
tasks
 Set goals WITH the family – if they are
not functional and meaningful to the
family, they will not be achieved
 HEALTHY EATING LEARNING
PROGRAM (HELP) FOR
FUSSY EATERS

 Randomised controlled trial (RCT)

 Comparing clinical benefits and cost effectiveness of

different feeding intervention programs for children 1-6
years old with feeding difficulties and restricted dietary
intake

 Examining specific populations: children with autism

spectrum disorder; children born prematurely; children
with a history of cancer, gastro-intestinal disease; or
cardio-respiratory disease; and children with no major
medical history, but a restricted diet.

 Programs to be evaluated are multidisciplinary

programs already used widely
 BACKGROUND
 It is universally accepted that a wide range of dietary
intake is essential for optimal growth and development

 It is widely reported that many children aren’t meeting

their nutritional requirements

 Parents report feeding difficulties as one of their

biggest concerns

 Parents want guidance on how to get their children to

eat a wide range of foods

 There is currently wide variation in practice related to

managing children with feeding difficulties

 No published studies are available that compare

outcomes from different approaches
 KEY INDICATORS OF
FEEDING DIFFICULTIES
 Limited range of textures
 Often reliance on ‘easy to eat’ junk foods
 Limited range of foods
 < 30 foods
 <10 fruit/ veg, <10 proteins, <10 grains/starches
 Prolonged mealtime duration
 >30 mins at mealtimes, >2hrs a day spent trying to
feed child
 Battles/ problematic behaviour at mealtimes
 Family stress related to the child’s
eating patterns
 HELP STUDY
Eligible children are stratified into groups and undergo
baseline assessment

Parents elect to participate in weekly or intensive therapy

Intensive (over 1 week) Weekly (over 10 weeks)

RANDOMISATION

Arm One Arm Two Arm One Arm Two

Post treatment assessment
3 month follow up assessment
 STAFF

 Multidisciplinary team including

 Speech pathology

 Occupational therapy

 Psychology

 Dietetics

 Gastroenterology
QUESTIONS?

j.marshall@uq.edu.au