Autism and Eating Disorders: Strategies for Parents

Melissa Nishawala, MD & Michelle Miller, PsyD

F.E.A.S.T.

Overview

• Prevalence of autism in eating disorders
• Where autism and eating disorders overlap
• How eating disorder treatment can be more tailored to support neurodiversity
• Support for caregivers of autistic individuals with eating disorders
• Case examples
• Q & A

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• Terminology
• Identity-first vs person-first language
• APA guidance not clear
• Autistic community suggests identity first (e.g., Keating et al., 2022)
• Be aware of the impact of the language we use (Bottema-Beutel et al., 2021)

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• Medical Model
• Medical vs. Social model:
• Neurodiversity/difference vs neurodevelopmental disorder
• Many assessment measures exist in the context of the Medical Model:
• Terms such as “disorder,” “symptom,” & “impairment” are used throughout
• We acknowledge the importance of environmental adaptations and supports to promote acceptance, understanding, and inclusion

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Note about language

Embracing neurodiversity

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• Autism is a different but equally valid way of engaging with and experiencing the world
• Identity first language: Self-advocates prefer “Autistic” or “Autistic person/individual”
• “Different, not less” – Temple Grandin
• Neurodiversity is not something that needs to be cured
• Many autistic individuals say that they wouldn’t be who they are without their autism
• Explore neurotypical privilege
• All individuals continue to grow and make progress at their own pace

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Autism: It’s not one size fits all…

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If you know one person with autism, you know one person with autism.

Autism and Eating Disorders

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Department of Child and Adolescent Psychiatry

Child Study Center

Prevalence of Autism Traits/Diagnosis in Eating Disorders

• More research needed for exact numbers, but below percentages from a limited number of studies, many on anorexia in adults
• Multiple studies have found an autism diagnosis or high levels of autism traits in around 20% of women with anorexia
• Autism rates in teens/children with anorexia – 5% or less
• 32% of autistic children and adolescents have a feeding or eating disorder 
• Across age groups, the prevalence of autism diagnoses was 16.27% in those with avoidant restrictive food intake disorder (ARFID) and ARFID prevalence in autistic individuals was 11.41%
• Binge eating and bulimia have less research on comorbidity with autism

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Possible Mechanisms Underlying the Association �between Eating Disorders and Autism

• Conceptual overlap in diagnostic criteria and measurement
• Eating disorders causing transient autistic traits
• Non-specific associations
• Autism directly or indirectly causing feeding and eating disorders
• Autistic women having restricted interests around food
• Common causal factors

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Adams, Mandy, Catmur, & Bird, 2024

Commonalities between AN and Autism

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• Anxious/avoidant attachment
• Interpersonal distrust
• Social anhedonia
• Low affiliation
• Socially aloof

Social Relationships

Communication

• Low Reception of facial cues (scanning patterns)
• Low facial expressivity
• Struggle to express emotions

• Circumscribed interests
• Fixed routines & rituals
• Hypervigilant monitoring
• Insistence on sameness
• Need for predictability

Repetitive, rigid behaviors

Cognitive Styles

& Biases

• Attention bias
• Perseverative
• Inflexible set-shifting
• Fragmented coherence

Perceptual

Functioning

• Sensory perception and regulation
• Interoceptive awareness

• Limitations in emotional expression
• Emotion regulation
• Poor integration of new input
• Weak theory of mind

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Social-Emotional

Processing

Eating Disorder Treatment and Autism

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Evidence-Based Treatment Interventions

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Poorer Treatment Outcomes in Autistic ED Patients

Autism indirectly contributes to poor treatment outcomes

• Cognitive styles and biases play a role in perfectionism and other social-emotional difficulties and is associated with more severe form of illness
• Severity of comorbid symptoms (depression, anxiety) is greater
• Psychological and social/occupational functioning is worse

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Li, Z., Hutchings-Hay, C., Byford, S., & Tchanturia, K. (2024).

What are some unmet needs of autistic individuals in ED treatment?

Kinnaird, Norton, Stewart &Tschanturia (2019)

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Treatment of Eating Disorders in Autistic People

• https://www.peacepathway.org/

Pathway for Eating disorders and Autism developed from Clinical Experience (PEACE)

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• Kate Tchanturia, PhD at Kings College, UK

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• More individual interventions and less group
• Providers trained on assessment and treatment of autism

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• Flexibility

• Social Skills Training

• Collaboration with other providers (ex. occupational therapist)

Common Treatment Adaptations for Eating Disorders in Autistic People

• Clear Communication

• Visuals

• Social skills support

• Collaboration with other providers (ex. occupational therapist)

• May need more therapy or interventions

• Incorporation of interests

Sensory Processing Support

• Food choices on treatment (ex. weight restoration with preferred sensory foods, begin exposures with foods that are similar to preferred sensory foods)

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• Attention to other sensory needs in higher level of care programs (ex. accommodations for noise sensitivities)

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• Referrals for occupational therapy for sensory processing difficulties that do not involve food

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New ARFID treatment geared towards neurodiverse children

• The Feelings and Body Investigator Program
• Nancy Zucker, Katharine Loeb & Martha Gagliano
• Undergoing research at Duke University
• Elementary school aged children
• Super sensory recognition
• Focus on increased body awareness and comfort

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Caregiver Interventions

• Incorporation of highly motivating reinforcement
• Model flexibility and curiosity towards food
• Praise and positive attention to every small steps towards goals
• Seek out neuroaffirming clinicians
• Support child in advocating for themselves
• Self-care is essential for caregivers
• Support groups

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Caregiver ARFID Interventions – Tips from SPACE adaptation for ARFID

1. Do not punish your child for not eating
2. Do not comment on your child's eating or try to convince them to eat with repetitive prompts
3. Do not compare to siblings
4. Do not make exaggerated comments about food, such as it being "amazing"
5. Use descriptive comments (ex. sweet, tangy, crunchy or chewy) for food.
6. Introduce the idea that things can change over time. 
7. Don't give up if your child does not like a food when initially trying it.
8. Do not decide how much your child should eat.
9. It's okay for children to spit out food.
10. Be okay with throwing away food during this process.
11. Don't take things personally
12. Meals are not just about food
13. Do not make dessert a reward for eating a meal.

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Case Examples

Adolescent case

• 16-year-old female, “Jen,”
• History of AN, purging subtype, since 10-years-old
• Additional diagnoses: anxiety, depression, OCD, ADHD
• Vulnerabilities reported at intake: history of challenging family dynamics, social struggles, moved and started new schools many times
• Over 5 different higher level of care programs
• Programs reported that Jen and parents were not consistently compliant
• Never fully weight stored
• Long standing psychiatrist (on SSRI and Olanzapine)
• Good rapport with dietician

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Adolescent case

• Parent intake findings:

*history of social difficulties dating back to toddler years

*significant speech delay

*sensory sensitivities

*repetitive behaviors (ex. scratching one area of body)

*intense rigidity outside of anorexia symptoms

• Patient interview observations:

*stereotyped and overly formal speech

*unusual finger movements

*evidence of restricted interests

*Limitations with social insights

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Adolescent case

Miscommunication about what autism means by different providers is confusing for families and can feel invalidating to their experience

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Determining autism in less clear cases should use evidence based and standardized measures

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Current focus of treatment: increasing self-awareness, maintaining weight and eating progress, moving toward more autonomy and independence, improving peer social experiences, supporting parents in creating appropriate structure

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Child ARFID case

• 9-year-old boy
• Diagnoses of ADHD and ASD
• Funny, intelligent, many strengths 
• Limited diet – one brand of chicken nuggets, one type of sausage, no other proteins, two fruits, no vegetables, various carbohydrates
• Medically – blood work unremarkable and following growth chart

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Child ARFID case

• Engaged in FBI ARFID protocol
• Initial sessions helped to ease comfort with body and allowed time to build rapport
• Started with foods similar to preferred foods, and then to foods most recently dropped
• Every food had 2-3 weeks of exposures
• Highly reinforced by Roblox and extra screen time
• Enjoyed learning about the characters
• Ended with many fruits, as well as more vegetable, protein and meal options

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Child ARFID case #2

• 10-year-old boy
• Diagnoses of ADHD and ASD
• creative, bright, many strengths 
• Limited diet – Limited proteins and fruits. Sometimes has cucumbers, no other vegetables. Meals are often brand specific – ex. pizza from one restaurant
• Medically – blood work unremarkable and following growth chart

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Child ARFID case #2

• Began with FBI ARFID protocol, but child was uninterested
• Switched to CBT-AR
• More engaged in treatment
• Motivation increased with reinforcement of youtube privilege
• Child more willing to try foods and adjusted to eating more previously avoided foods

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Thank you

Child ARFID case #2

• Started with FBI ARFID protocol, showed low interest
• After 3 sessions of low interest, engaged in CBT-AR
• Reinforced by screen time (youtube) that could not normally watch
• Able to increase number of fruits, vegetables, proteins, as well as brands that he will eat

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