When Autism Spectrum Traits Complicate Eating Disorders Treatment
By Kim McCallum, MD, FAPA, CEDS
A young man with anorexia and osteopenia has trouble maintaining friendships; he displays odd mannerisms, monotonous speech, and aggressive outbursts, with periods of rapid weight loss associated with restrictive eating and periods of purging.
A brilliant teenage girl with anorexia and severe malnutrition “doesn’t trust people” but loves to be with horses; she has messy eating habits and wears the same clothing most days. She voices inappropriate expectations about relationships and suffers from unrelenting standards that she has for herself and others. Her inflexible routine includes daily running and a food palate typical of a young child.
A transgender adult with binge eating disorder who didn’t speak until age 3 reports very frequent binge eating, a limited diet, and a preference for sweets; he has attention deficit hyperactivity disorder (ADHD), morbid obesity, bowel disease, depression, immature behavior, poor social skills, and aggressive outbursts.
A quirky college-age student with severe malnutrition and avoidant restrictive food eating disorder (ARFID) also has ADHD, obsessive-compulsive disorder (OCD), and severe anxiety; she has difficulty with relationships and avoids expectations, including participation in psychotherapy and meal exposures, work, or school.
What do these patients with eating disorders also have in common? They all manifest traits of autism spectrum disorder, which may complicate their clinical course. Our understanding of autism has changed considerably over the past 30 years. DSM-5 (2013) replaced subcategories of nonverbal autism, pervasive developmental disorder, and Asperger’s syndrome with the unifying diagnosis of autism spectrum disorder (ASD). Current diagnosis requires:
- presence of persistent deficits in social communication (i.e., abnormal prosody of and tone of speech, speech delays) and social interaction across multiple contexts: deficits in social-emotional reciprocity (i.e., reduced sharing of emotions, awkward conversations), deficits in nonverbal communication (i.e., abnormal gaze, facial expression, or use of gesture), deficits in relationships (i.e., difficulties adjusting behavior to new contexts, maintaining closeness) and
- restricted, repetitive behavior or activities, as manifested by at least two of the following: repetitive motor movements, insistence on sameness (i.e., eating the same food every day, inflexible adherence to routines), highly restricted interests, and hyper- or hypo-reactivity to sensory input.
Although the new ASD criteria are less confusing and more reliable, inclusion criteria are narrower, resulting in some patients with significant spectrum symptoms not meeting full criteria for ASD.
Cognition in those with ASD spans from gifted to disabled. They are likely to think in pictures or patterns, rather than words, and are good at detail. Their “specialist” brains are not wired to be social. Features that lead to disability include concrete thinking, difficulty sustaining attention, slow set shift, and poor central coherence, along with difficulty regulating emotion and behavior. Sensory and feeding problems including picky eating are also common (Mari-Bauset, Zazpe, Mari-Sanchis, Llopis-González, & Morales-Suárez-Varela, 2014). DSM-5 ASD has a prevalence of 1/59 in the U.S. (Baio et al., 2018). ASD occurs four times more frequently in males, but diagnostic tools may miss some clinically significant cases in females, partly because symptoms manifest differently (Ormond, Brownlow, Garnett, Rynkiewicz, & Attwood, 2018). Many individuals with ASD have normal speech and a normal or high IQ (IQ testing is variable in ASD). Bowel disease, epilepsy, and obesity (Hill, Zuckerman, & Fombonne, 2015) are more commonly seen in teens with ASD than in their neurotypical peers. Over the years, I have worked with many verbal teens and young adults who have struggled with life-threatening eating disorders in the context of their autistic traits.
ASD traits measured by standardized assessments occur in higher rates in those struggling with eating disorders including anorexia, ARFID, bulimia, and binge eating disorder (Dell’Osso et al., 2018; Gesi et al., 2017; Huke, Turk, Saeidi, Kent, & Morgan, 2013). Depression, bipolar disorder, ADHD, phobias, anxiety disorders, and OCD are all common in both ASD and eating disorders, suggesting common brain circuitry underlying some, if not all, of the symptoms. For instance, cerebellar pathways are now thought to be involved in social communication, cognition, eating, and emotion regulation. The cerebellum is thought to play an important role in ASD. Anorexia nervosa, bulimia nervosa, and ASD patients showed different patterns of intrinsic connectivity involving cerebellar pathways than controls (Fatemi, 2013; Amianto et al., 2013). There is growing evidence of similarities between anorexia and ASD in terms of impaired cognitive, social, and emotional processing (Westwood, Stahl, Mandy, & Tchanturia, 2016; Westwood, Lawrence, Fleming, & Tchanturia, 2016). Adolescents and young adults with ASD are at a high risk for suicide attempts and are significantly more likely to show gender dysphoria. Screening for traits of ASD may help us identify a subgroup of patients who are at increased risk.
It’s important to consider that the diagnosis of ASD, especially in females with high IQ or special gifts, may have been missed. “Hungry brain” changes in cognition seen in weight-suppressed patients with anorexia may mimic or amplify ASD traits. Traits must have been present prior to onset of the eating disorder to be considered comorbid. ASD may be masked in verbal patients until the social demands of school precipitate distress. For some, this can occur later in adolescence or even early adulthood. In my clinical experience, although most patients with severe and enduring illness were not diagnosed with ASD, many reported childhood onset cognitive inflexibility, social avoidance/poor or limited peer relationships, compulsive behaviors, constricted interests, and sensory sensitivities.
There are several effective assessments and screening tools for ASD in adults (Falkmer, Anderson, Falkmer, & Horlin, 2013). The Autism Diagnostic Interview-Revised (ADI-R), Autism Diagnostic Observation Schedule, Second Edition (ADOS-2), and Autism-Spectrum Quotient (AQ) are all diagnostic tools that elicit standardized and objective information about social communication skills, restricted interests, and repetitive behaviors. The Social Responsiveness Scale (Constantino & Gruber, 2012) is a useful tool to screen for ASD traits (Bölte, Westerwald, Holtmann, Freitag, & Poustka, 2011). A complete interview and medical assessment are necessary to confirm the diagnosis. Medical screening typically includes a physical examination, a hearing screen, a Wood’s lamp examination for signs of tuberous sclerosis, and genetic testing, particularly G-banded karyotype, fragile X testing, or chromosomal microarray (Volkmar et al., 2014).
Treatment
Screening for sensory sensitivities and preferences is an important first step in thinking about changing feeding behavior. Understanding chewing, swallowing, and taste skills, and texture and food sensitivities can help when planning for the introduction of new foods. Sensory over-responsiveness to food can lead to strong automatic gag and disgust reactions, and intolerance of the sensation of fullness. Individuals with sensory under-responsiveness describe reduced sensitivities to hunger and reduced awareness of satiety cues or the sensation of fullness. Eating the same food every day or extreme difficulty with meal exposures may be consistent with traits of ASD. Even in those without significant sensory food sensitivities, an inflexible adherence to routines can present as extreme distress in response to small changes in plans, and rigid thinking patterns can interfere with typical meal exposures and behavioral experiments. Special attention should also be given to patterns of food acceptance or rejection. Behavior may be related to the manner of presentation or food texture. If this is the case, consider modifying the setting (i.e., a quiet, low-stimulation room). Eating that is limited to only a few foods and textures may have begun in early childhood, when food was first introduced. New foods may be overwhelming and lead to shutdown or refusal. Begin with a gradual, sensory-specific plan to introduce tastes and textures that will build the skills necessary to sustain a healthy balanced diet.
The setting of care is always an important consideration when supporting individuals with eating disorders. Deficits in emotion regulation, social cognition, and behavioral control can be particularly challenging in groups. Patients with ASD may inadvertently insult others or be insensitive to the vulnerabilities or points of view of others. They may not realize when comments might be triggering to others. Those with ASD are prone to misinterpret social events or miss nuances related to social repair. The emotional intensity and poor modulation of emotion can be overwhelming for peers.
Considering environmental sensitivities will minimize interference from unhelpful reactions to environmental stimuli. Group meals can add social stress to meal exposures (e.g., social touch, proximity of others, voices). High arousal associated with group meals may lead to rejection of the exposure. Occupational therapy interventions focused on improving chewing and swallowing skills or on reducing sensory distress related to the mouthfeel of food can help patients prepare for changes in meal plans. Dietary goals that focus on health, skill acquisition, social normalization, and increased flexibility are typically more readily accepted than goals to accept all foods.
Psychological and Behavioral Concerns
Mental processes involving making sense of people and reading nonverbal and verbal cues are different in ASD. Because of this neurodiversity, adolescent development is often a time of alienation. Teens and young adults may experience significant distress related to social isolation, bullying, and rejection. What makes relationships so difficult? Speech may sound robotic, too loud without music. They may inadvertently stare at other people or avert their gaze in ways that cause social discomfort in peers. They may be frustrated by abstract thinking and show poor problem-solving when there is a social conflict. Body boundaries and sense of physical space may be in conflict with social norms.
Families of patients with a previous diagnosis of ASD often have developed specific skills and are experts in supporting their loved one. Their involvement in treatment is extremely important. The school history is a good source to help assess special needs in therapy. Were they mainstreamed? What modifications have helped with learning and social integration? Have they benefited from speech, occupational, or applied behavior analysis (ABA) therapies? Teens will need similar strategies to support learning if they’re in residential care. It’s important to include the patient’s known self-regulatory skills and interests in the treatment plan to motivate and reinforce attempts to face new challenges. Time to focus on special interests can help structure free time and emotion/behavioral regulation. Most patients need support and coaching around table manners, chewing, appropriate conversation, and hygiene.
Psychotherapy and family interventions in patients with ASD and eating disorders can be tailored to the specific challenges associated with the underlying traits. A lack of normal conversational skills (e.g., starting or continuing a conversation) and problems maintaining social attention can make typical therapy strategies difficult. Approaches that focus directly on building social and communication skills are likely to be more successful than open-ended, uncovering approaches. Simple, concrete language, especially when the words used are visual in nature and accompanied by visual supports, is likely to be easier to interpret than abstract or metaphorical language. Therapists can provide cues and refocus in-session when appropriate. Shorter, more frequent visits may improve memory processing and reduce frustration.
Effective modulation of emotional responses is critical for mental health and requires flexibility in adapting to different and novel situations. Cognitive reappraisal skills are a primary means for adaptive emotion regulation. Cognitive reappraisal deficits are associated with ASD, depression, social anxiety disorder, and eating disorders. Emotion-regulation-focused cognitive therapies that use visual cues and concrete reminders can be helpful. Verbal patients may respond to focused cognitive behavioral therapy, dialectical behavior therapy, other cognitive therapies, and social skills training. Interventions should focus on specific targets—e.g., use a particular skill when angry. Pilot data suggests that cognitive remediation therapy (CRT) strategies may also be helpful in reducing anxiety and improving central coherence in ASD (Okuda et al., 2017). ABA therapies can be adapted to support adult treatments, targeting irritability and problem behaviors. Whenever possible, exercise should be incorporated into the therapy plan. There is evidence that regular exercise increases sociability, improves emotion reactivity and focus, and reduces self-stimulation (Pan et al., 2017). CRT can improve both cognitive and social symptoms, which may fuel distress (Eack et al., 2013). CRT may be a promising treatment for patients with severe or enduring eating disorders (Dingemans et al., 2014).
Medications are evidence-based interventions for ASD that should also be considered to target attention deficits and emotion and behavioral dysregulation (Volkmar et al., 2014). Atypical antipsychotics (e.g., aripiprazole and Risperdal) help with irritability and aggression associated with ASD. Both atypical antipsychotics and selective serotonin reuptake inhibitors (e.g., fluoxetine) may reduce repetitive behavior. Stimulants and alpha-agonists such as clonidine and guanfacine may improve attention, impulsivity, and sleep.
Lessons Learned Working with ASD in Intensive Treatment Settings
Intensive residential, inpatient, or partial hospital care is often needed for weight restoration, to interrupt medically compromising behavior, or to ensure safety. Difficulty sleeping is to be expected, especially if placed in 24-hour care, owing to the change in routine and setting. Families should be included in the preparation for care, treatment decisions, and scheduling, and to support transitions. The suicide rate is higher in patients with ASD (Chen et al., 2017). Explore the context and triggers for past episodes of verbal or physical aggression. A safety plan should be in place, and community rules should be presented prior to any group work or higher level of care. A prolonged period of orientation is recommended. Clarification of the goals of each group can help reduce anxiety and increase effective participation. Everyday activities such as free time, meals, groups, and outings can potentially lead to overstimulation. Consider if participation in some groups may be counterproductive. Consider a plan for time with a computer or access to a private space.
In community, patients will need additional support. We suggest that support staff remain available and in the physical space, especially during transitions. Challenges related to intensive treatment can lead to high rates of early discharge and treatment failure. To support the best chance of recovery, we recommend modifications to treatment protocols recognizing vulnerabilities and building on strengths. Choices presented should be both clear and limited in scope. This rule should be applied to both assignments and personal decisions. If a behavior is off norms or interfering, staff should calmly suggest another behavior. A gentle, regular tone of voice helps to reduce distortion of intent or excessive defensiveness. Patients may need help with problem-solving and interpreting meaning if there are social conflicts. The team can set the expectation that, at times, there might be a normal need for social repair and can remind patients to deploy skills when conflicts arise. Many with ASD have experienced bullying and feel rejected by peers. Staff and family should watch for signs of distress, including social withdrawal, idiosyncratic strategies for self-regulation, and unconventional behavioral strategies and emotional expressions—e.g., aggression, tantrums, running away from uncomfortable situations. Positive reinforcements informed by an ABA therapy strategy may be necessary to support behavioral change. Because individuals may struggle with picking up on social norms, hygiene, and table manners, social skills training can help with social acceptance. Patients should be encouraged to bring hobbies when possible. Self-monitoring tools or apps can help with emotion regulation, communication, and social challenges.
Summary
People with ASD have different ways of perceiving, attending to, remembering, thinking about, and making sense of the world. The course of illness and responses to core elements of eating disorder treatment may be different when ASD traits are in play. Individuals with a significant active comorbidity or atypical responses may benefit from approaches that build on strengths and special needs, supporting healthier adaptation to underlying autistic traits. Screening for ASD can help guide successful treatments. Modified focused plans might include medication, cognitive exercise plans, emotion regulation, and social skills strategies.
About the author:
Kim McCallum is a psychiatrist who has developed intensive treatment programs for teens and adults suffering from eating disorders. She received her MD from Yale School of Medicine and her Residency in Adult General Psychiatry at UCLA Neuropsychiatric Institute where she was a Chief Resident . To expand on her training, Dr. McCallum pursued and completed psychoanalytic training at the St. Louis Psychoanalytic Institute and a Fellowship in Child and Adolescent psychiatry at Washington University School of Medicine. Dr. McCallum is board certified in Adult and in Child/Adolescent Psychiatry. She is an Associate Professor of Child and Adolescent Psychiatry at Washington University School of Medicine, a fellow of the American Psychiatric Association, past member of the Board of Directors of the National Eating Disorders Association and of the International Association of Eating Disorders Professionals. In addition to the treatment of eating disorders, her areas of interest include working with athletes, anxiety disorders, ADHD, autism spectrum disorders, mood disorders, family interventions, psychotherapies and integrating affect science and mindfulness practice into treatment. Dr. McCallum is a founder of McCallum Place Residential and Partial Hospital Treatment Programs (St. Louis, Kansas City) and the Missouri Eating Disorders Association a nonprofit organization, dedicated to raising awareness, educating professionals and prevention in schools.
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