Avoidant Restrictive Food Intake

Disorder (ARFID) in Autistic People

7 September 2020

Dr Rachel Bryant-Waugh, MSc, DPhil

rachel.bryant-waugh@slam.nhs.uk

With thanks to Will Mandy and Laura Bourne at UCL

 WHAT DOES CURRENT
WHAT IS ARFID?
RESEARCH TELL US?

IMPROVING SERVICES FOR PEOPLE

WITH ARFID AND AUTISM
 Feeding and Eating Disorders
What is • Now classified as one group including SIX main variants of
eating difficulty/disturbance:
ARFID?
• Pica
• Rumination/regurgitation disorder
• Avoidant restrictive food intake disorder
• Anorexia nervosa
• Bulimia nervosa
• Binge eating disorder

• Other specified feeding and eating disorders (DSM-5)/ other

feeding or eating disorder (ICD-11)
© Rachel Bryant-Waugh
 ARFID diagnostic criteria
What is
No food Common
ARFID? available x Weight loss ✓ practice x

Nutritional
needs x

Psychosocial Avoidance or Nutritional

impairment ✓ restriction deficiency ✓

Energy needs x

AN/BN Explained
weight / Alternative by another
feeding ✓
shape x condition x

© Rachel Bryant-Waugh
What is What can drive the
ARFID? avoidance/restriction?

1 2 3

An apparent lack of Avoidance based on Concern about

interest in eating or the sensory aversive consequences
food characteristics of food of eating

e.g., easily distracted, e.g., temperature; e.g., specific fear of

high arousal, poor taste; appearance; vomiting, choking,
interoceptive colour; smell; texture; discomfort etc.;
awareness, low hunger ‘brand’ specificity; traumatic association;
drive food neophobia
 Commonly identified co-occurring features
What is
ARFID? • Anxiety and depression/mood difficulties (est. c 55-60%)

• Autism (est. c 40%)

Each person
will be
• Concentration and attention difficulties
different!

• Medical conditions (est. c. 55%)

• Significant impact on social/educational functioning and

family life

© Rachel Bryant-Waugh
 Important to remember
What is • ARFID is just a new term – it is not a ‘new disorder’
ARFID?
• It is associated with significant distress and impairment – it is
NOT ‘picky eating’ or somehow less important than the other
eating disorders

• ARFID includes a heterogeneous group of individuals in terms of

presenting features and specific areas of difficulty and impact

• ARFID occurs in children, adolescents and adults; eating

difficulties can be longstanding or have an acute onset

© Rachel Bryant-Waugh
 WHAT DOES CURRENT
WHAT IS ARFID?
RESEARCH TELL US?

IMPROVING SERVICES FOR PEOPLE

WITH ARFID AND AUTISM
 ARFID in clinical
Current eating disorder Food selectivity
research samples and and feeding
amongst the problems in autism
general population

ARFID
in the autistic
population

Laura Bourne
 Current How common is ARFID in
research the autistic population?

5x ARFID-LIKE
EATING
DIFFICULTIES
(Sharp et al, 2013)

Laura Bourne
 Current What are the consequences
research of ARFID?

Nutritional Psychosocial
Weight and
deficiencies impact
growth
Need to increase
range
problems Relationships
with family

Oral nutritional
supplements Social withdrawal

Need to increase
Tube feeding energy intake Stigma
 ARFID treatment research
Current
• Very varied in terms of populations and presentations studied
research making generalisation of findings difficult

• Some positive early findings, also differences in treatment

response to those with AN when treated with ED protocols

• Proposed interventions include behavioural, cognitive

behavioural, parent, family, pharmacological and multi-
modal

• As yet insufficient research generated evidence to be able to

make reliable recommendations for the treatment of ARFID
© Rachel Bryant-Waugh
 What do we know?
Current • Eating problems are not an inevitable or fixed characteristic of
research autism

• Misconception: ARFID is ‘all part of autism’

• Autistic people do not necessarily have sensory based food

avoidance alone

• Autistic people with ARFID can be helped with appropriate

input

• A comprehensive understanding relies on larger scale studies

 WHAT DOES CURRENT
WHAT IS ARFID?
RESEARCH TELL US?

IMPROVING SERVICES FOR PEOPLE

WITH ARFID AND AUTISM
 Current context

• Recent increased investment from NHS E to support the

Improving
expansion of community ED teams for CYP to meet increasing services
demand, including the needs of those presenting with ARFID

• National ARFID pilot (Oct 19 – March 20) included one site

from each of the seven NHS England regions – all tested
including ARFID in the CYP ED Community Pathway

• All sites were positive about their participation, identifying a

number of strengths and possibilities – all identified need to
more carefully consider needs of autistic CYP

© Rachel Bryant-Waugh
 Findings from ARFID pilot

• Initial clinical evidence suggests 30-45% of CYP presenting

Improving
with ARFID to CYP-CEDS are autistic/undiagnosed autistic services

• Currently, many clinicians in these services feel they lack the

knowledge / confidence /skill-set to treat ARFID in autistic CYP

• Services are often not set up in in an ‘autism friendly’ way

• Many CYP with eating difficulties get turned away because

they are autistic

© Rachel Bryant-Waugh
 Summary: ARFID and autism

• Many clinicians in ED services not specifically trained or Improving

confident in working with autistic people services
• Lower age range of most ED services (usually around 8 years)
unlikely to capture younger autistic children with ARFID

• Definite gap in evidence base how best to assess and work with
autistic people who have ARFID – need input from those with
direct experience

• Current assessment and treatment approaches usually lack any

mention of reasonable adaptations to enhance ‘fit’
© Rachel Bryant-Waugh
 What lies ahead?

• Welcome focus on training /awareness raising about ARFID Improving

generally but also specifically about ARFID in autistic people services
• Growing body of clinical evidence that autistic people with
ARFID can be supported to change their eating behaviours
• Improvements in overall nutritional intake
• Measurable benefits to general health and well-being

• Needs of autistic people with ARFID now actively being

considered at service, commissioning and policy level

© Rachel Bryant-Waugh
 Thank you!

rachel.bryant-waugh@slam.nhs.uk