Eating Disorders and Neurodiversity
Reviewed by Maggie Klyce, LICSW-S, CEDS-S
What is Neurodiversity?
Neurodiversity refers to the concept that the brain functions in diverse ways which impact how individuals perceive and interact with the environment around them.1 The term was first coined by Judith Singer, an Australian sociologist, in the 1990’s to describe a growing movement in the autism community which sought to advocate for increased acceptance and inclusion of people with all types of neurological differences and promoted the idea that these differences were a reflection of the diversity of normal human neurological functioning and not a deficit.2
While the concept of neurodiversity rejects the idea of neurodivergent people as lacking compared to those who are neurologically typical, many in the neurodiversity community recognize the benefits of the disability label and their associated diagnoses since it allows them to access protections, services, and accommodations under the Americans with Disability Act (ADA). Though opinions vary within the neurodiversity community and some neurodivergent people choose not to adopt the disabled term, most advocates within the community do not see the concepts of neurodiversity and disability as mutually exclusive. Instead, many view these concepts as complimentary – fighting for greater acceptance and acknowledgement of the value of neurodiversity while simultaneously continuing to advocate for the support and accommodations individuals may require.3
Though neurodiversity is not a formal diagnosis it has become an umbrella term to describe many different types of neurodevelopmental differences such as autism, attention deficit hyperactivity disorder (ADHD), intellectual disability (ID), and other types of learning differences. Furthermore, while there still remains much debate about the concept of neurodiversity amongst treatment providers and academics in the field, the philosophy of neurodiversity has begun to inform the ways in which professionals and researchers conceptualize neurological conditions and the ways in which to best support individuals to get their needs met.4
What is the Connection Between Eating Disorders and Neurodiversity?
Although research on neurological conditions and eating disorders remains limited, studies have consistently found that people with neurodevelopmental differences, including autism, ADHD, and intellectual differences, seem to be at a greater risk for developing eating disorders.5 Below we review how each of these conditions intersects with eating disorders and how this impacts seeking treatment and the recovery process:
Autism Spectrum Disorder (ASD)
Some estimates hold that as much as 23% of people with eating disorders are also autistic.6 Studies have found that adolescent girls with anorexia may be more likely to exhibit elevated autistic traits such as tendencies to develop rules for how to operate in various situations, difficulty in developing and maintaining relationships, high focus in areas of interest, and difficulty in changing established patterns.7 Therefore, researchers contend that autistic girls may have a unique vulnerability to developing anorexia because their autistic traits also contribute to rules for managing food and hyperfocus on body weight.8 For example, a study of adolescent girls with AN found that 10% met criteria for autism and 40% showed higher levels of autistic traits.9
Furthermore, individuals diagnosed with both anorexia nervosa (AN) and autism experience more severe symptoms of AN compared to those without autism.10 Autism and AN share many of the same traits and current research points to shared underlying mechanisms (such as shared endophenotypes and differences in brain structure and function).8,11 Research suggests that AN does not cause autism but that autistic traits are most often present before the development of AN and that even once an individual has recovered from their eating disorder that a similar percentage of individuals still meet criteria for autism.12
Researchers have also found that autistic people seem to be at a greater risk for other types of eating disorders including pica and avoidant restrictive food intake disorder (ARFID) both of which are much more common among this population.13,14 For example, studies have found that up to 30% of autistic children had symptoms of pica and 21% of autistic individuals have a diagnosis of ARFID.11,15,16 The most typical eating and feeding issues found in autistic individuals, which are also common for those diagnosed with ARFID or pica, are limited food preferences, hypersensitivity to food textures, only eating one brand of food, pocketing food without swallowing, restrictive mealtime rituals, and eating non-food substances (pica).17 The relationship between autism and ARFID has not been fully established, however research has identified a genetic link (zswim6 gene) between them.18,19
Attention-Deficit/Hyperactivity Disorder (ADHD)
ADHD is characterized by “a persistent pattern of inattention and/or hyperactivity-impulsivity that interferes with functioning or development” 1 and is the most common mental health diagnosis among children and adolescents.20 Researchers have found that up to 22% of women diagnosed with ADHD also develop an eating disorder and children with ADHD are almost 6 times more likely to have an eating disorder by the time they reach late adolescence than those without ADHD.2,17 Studies have also found that individuals diagnosed with binge eating/purging subtypes of AN, bulimia nervosa (BN) and binge eating disorder (BED) show higher rates of ADHD than those with a restrictive subtype AN diagnosis.2 Furthermore, individuals with BED and ADHD often experience more severe eating disorder symptoms including more frequent binge episodes compared to those without ADHD.21
While the link between eating disorders and ADHD is still unclear, researchers hypothesize that this high co-occurrence is likely due to a combination of genetic and environmental factors.22 Eating disorders, particularly those that involve binge/purge behaviors, have similar traits to those diagnosed with ADHD including issues with attention, functioning, impulsivity, and emotional dysregulation.17 Many researchers believe that these common traits could be the mechanism which links ADHD and eating disorders.19
Additionally, people diagnosed with AFRID also have a higher risk of having ADHD. For example, studies have reported that up to 39% of children and adolescents being treated for ARFID also met the diagnostic criteria for ADHD compared to up to 10% of the general population.23.24 Similarly to other eating disorders, researchers believe that the increased prevalence of ARFID and co-occurring ADHD could be related to certain shared characteristics between the two. These characteristics typically include being easily distracted, problems with impulsivity, increased activity levels, and having a hard time staying seated to finish a meal, which could explain why people with ADHD often present with the limited food intake characteristics of ARFID.12
Intellectual Disability (ID)
Intellectual disabilities (ID) are conditions that include both challenges in mental abilities and in a person’s ability to function in their daily lives when compared to their peers.23 Persons with ID can present in many different ways in terms of the specific challenges they experience in social abilities, communication, thinking and reasoning, learning, and problem solving. It is estimated that 2% of children in the general population have ID, but the exact prevalence is difficult to estimate because researchers of ID do not always use the same criteria in determining which individuals to include in their data and rates vary according to the age of the person and the country they live in.25 Indeed, studies have found that prevalence rates are higher for youth than for adults and higher in middle income countries versus higher income countries.23
To be formally diagnosed, ID must be apparent during a person’s developmental period, either in childhood or adolescence before they reach adulthood. Males are more likely to live with ID than females, though studies vary in these estimates. ID can also vary in severity and the extent of support necessary to support a person’s daily functioning determines the level of severity for ID. While ID may vary in severity over time, they are typically lifelong conditions that result in significant functional limitations, but not always in intellectual challenges.23
One study found that up to 80% of children with ID have eating or feeding issues such as problems chewing, sucking or swallowing, selectivity of texture or temperature, and extreme food pickiness, behavioral disruption during meal times, and rumination or gastroesophageal reflux.26 Those with greater needs related to their ID may be more likely to experience difficulty with feeding and are at an increased risk for aspiration (food or liquids entering the airway or lungs rather going down to the stomach after swallowing).25,27 These types of issues can have a severe impact on the health and well-being of individuals with ID, such as aspiration, poor growth, nutritional issues and deficiencies, and/or the need for feeding tubes, all of which have major impacts on quality of life and could potentially lead to life-threatening issues.25
One type of eating disorder that is more common among folks with ID is pica. Studies have shown that up to 26% of children with ID also have pica, the highest estimates among populations that were institutionalized.13 ID is also more common among people who are diagnosed with ARFID with studies indicating that as high as 38% of children and adolescents with ARFID also have ID.12 Additionally, research has found that people with ID have higher rates of rumination disorder. For example, studies have found that 6-10% of individuals with ID also have rumination disorder.28 For those with ID the regurgitation behaviors of rumination disorder appear to have a soothing or stimulating effect which is similar to other behaviors characteristic of ID, like repetitive head banging.24
While it is unclear what exactly causes the high correlation between ID and eating disorders, researchers argue that it could be a combination of environmental factors, commonly co-occurring medical conditions, overlapping traits of the disorders, and difficulties with developmental and/or intellectual functioning that predispose people with ID to develop an eating disorder.29
Barriers to Support and Treatment
- Difficulty finding appropriate help due to limited specialists dealing with feeding and eating disorders who also have expertise with physical and neurodevelopmental conditions like autism, ADHD, pica and ID.30
- Treatment providers often think about disability in a negative way and this can impact the way they perceive and treat people with physical disabilities and neurodevelopmental disorders.31
- Treatment for an eating disorder can be quite costly, as is living life with physical and neurodevelopmental conditions. People living with these conditions frequently spend more than those not living with them and are also overrepresented in the lowest economic brackets, living on a limited income or government-funded disability payment. Given all these circumstances, finding affordable care to treat an eating disorder can be extremely difficult, as recovering from an eating disorder often takes years of ongoing treatment.32
- Simply getting from place to place can be a challenge for someone with a disability, making it especially challenging to access care in the traditional way.33
- Medical professionals may overlook signs and symptoms of disordered eating, as they are often overshadowed by, or masked by, other symptoms. For instance, it is common for individuals who have sustained a spinal cord injury (SCI) to experience significant muscle atrophy which can lead to noticeable weight loss and change in physique. There also can be appetite disturbances resulting from the SCI. Medical professionals (and individuals who see them) could greatly benefit from additional competency training for eating disorders screening among ALL of their patients, including those with disabilities.34
- People with physical disabilities are regularly urged to diet and lose weight by medical professionals, often in derogatory or shaming ways, with the intention of increasing mobility.35
- Depending on the type and severity of the eating disorder, many treatment programs require patients to attend for several hours a day, which could cause access issues for someone with a disability. For example, the treatment program schedule may interfere with essential activities of daily living (ADLs) that persons with disabilities must routinely attend to on a rigid schedule, such as bowel and bladder care.
Considerations in Seeking Support and Treatment
- Individuals who need caregivers to help them type or write may prefer to fill out intake paperwork with the help of a therapist instead of their caregiver to maintain privacy. Many therapists have their paperwork digitized so they may be accessed online, which may make it easier for some to independently complete.36
- There are more and more eating disorder treatment programs, therapists, registered dietitians (RDs) and other types of professionals offering telehealth options, allowing clients to log-on and participate in group and individual therapy via HIPAA compliant video conferencing. Telehealth can be helpful in addressing some of the barriers to treatment that individuals with disabilities often face by reducing costs associated with treatment, eliminating the need for transportation, and addressing the lack of ADA accessibility in many treatment facilities.37
- There are also free online support groups that can be accessed from the comfort of someone’s home. Learn more about free and low cost support groups here.
- It is important to find eating disorder treatment professionals who understand the importance of having a flexible schedule, to allow for other self-care needs and ADLs, many of which can be time-consuming and often require adherence to a rigid schedule. Treatment will only be successful if an individual is able to consistently participate and feels comfortable with their providers!36
- Early detection of eating disorders for individuals with neurodevelopmental disorders and other types of disabilities are essential as delays in diagnosis and treatment can lead to long-term health consequences.20
- Lastly, it is important to seek help from professionals or treatment facilities that specialize in eating disorders and neurodevelopmental conditions and/or physical disabilities in order to address the complex treatment needs of both conditions.
Learn more about treatment here.
Learn more about finding treatment providers in your area here.
Sources
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