Eating disorders and autism, though seemingly unrelated to each other, actually have more in common than many treatment providers — and individuals with eating disorders — realize. There are many instances of individuals with eating disorders being diagnosed with autism later on.
Read on for:
- A quick definition and characteristics of autism
- Trait similarities between autism and eating disorders
- Behavioral overlap between the two
- Challenges that autistic people face when it comes to eating disorder diagnosis and treatment
- How autism can be a strength in recovery
But first, an important note about language and identity:
There has been a relatively recent advocacy movement from within the autistic community to shift from person-first language (individual with autism) to identity-first language (autistic individual).
This movement points to the fact that autism is not something apart from the individual, and it’s not a disease. For example, we treat people suffering with eating disorders — the individual can be separated from their life threatening disease, and they can heal from it. However, an individual cannot be separated from their autism. It’s part of their identity, much like someone’s religion or sexuality. No one says “person with Judaism” or “person with homosexuality.”
And autism is certainly not a disease that someone “suffers from”, the way eating disorders are.
The type of language we all use matters — which is why, in light of this shift towards identity-first language, we will use “autistic individual” instead of “person with autism.”
What is autism?
Autism is defined in the DSM-5 as a neurological developmental disability that causes functional impairment. Autism is a “spectrum disorder”, and is now officially called Autism Spectrum Disorder.
While a lot of focus has been on autism in children, the DSM 5 states that symptoms must start in early childhood, but may not be fully recognized until social demands and obligations exceed an individual’s capacity. After that, an individual/their loved ones may fully realize the functional impairment that characterizes Autism Spectrum Disorder.
Characteristics of Autism Spectrum Disorder (ASD):
Diagnostic criteria of ASD are related to two areas:
1. SOCIAL COMMUNICATION AND INTERACTION:
According to the DSM 5, autistic individuals have all of the following characteristics:
- Difficulty establishing or maintaining back-and-forth conversations and interactions
- inability to initiate an interaction
- problems with shared attention or sharing of emotions and interests with others
These neurological differences are not explained by any developmental delays.
2. RESTRICTED AND REPETITIVE BEHAVIORS:
According to the DSM 5, at least two of the following behaviors must be present to diagnose autism:
- Stereotyped or repetitive speech, motor movements or use of objects
- Extremely strict adherence to routines, ritualized patterns of verbal or nonverbal behavior, or excessive resistance to change
- Highly restricted interests that are abnormal in intensity or focus
- Hyper or hypo reactivity to sensory input or unusual interest in sensory aspects of the environment
How common are autism and co-occurring eating disorders?
Disordered eating in autistic children has been well studied, with some studies citing 20% of adults with eating disorders also being on the autism spectrum. Newer studies also show that 6-17% of autistic individuals have an eating disorder.
However, studies are limited to individuals seeking care for problems related to autism or eating disorders. So it’s hard to know how common eating disorders and coexisting autism are.
Autism and Eating Disorders: Personality Trait and Behavioral Similarities
RIGIDITY IN THOUGHTS AND BEHAVIORS
Many autistic individuals have problems with eating itself, such as: food refusal, intense cravings, and very limited diets. They may also develop rigid mealtime routines involving anything from what time they eat to the utensils they eat with.
Others become hyper fixated on numbers, counting calories, amount of exercise, etc. This number-oriented obsession is also found in people with eating disorders.
SENSORY ISSUES WITH FOOD
Autistic individuals are prone to Avoidant/Restrictive Food Intake Disorder (ARFID), a disorder characterized by extreme rigidity around food choices.
Individuals with ARFID severely limit their diet, to the point where they suffer social, psychological, and — at times — physical consequences. Specifically, autistic individuals often struggle with sensory issues related to the smell, texture, color, taste, or temperature of food.
The list of acceptable foods gets so short that it’s hard for someone with ARFID to find things to eat while not at home. This limits their ability to be spontaneous and socialize — two things that autistic people struggle with.
They may also experience nutritional deficiencies since they do not eat a variety of foods.
Related: Learn more about the research, diagnosis and treatment of ARFID.
DIFFICULTY WITH SELF-REGULATION AND PROCESSING EMOTIONS
The majority of people who suffer with eating disorders also struggle to correctly identify and process emotions. This is called alexithymia, and it is also a very prominent feature of autism. Disordered eating and exercise behaviors may then become a way to cope with overwhelming emotions that are hard to identify or explain.
Related: This is how to identify what you’re feeling in eating disorder recovery.
DIFFICULTY IDENTIFYING HUNGER AND FULLNESS CUES
Some autistic people may overeat, or undereat, because they are unable to recognize hunger and fullness cues. This can lead to anorexia, or to binge eating disorder.
DIFFICULTY EATING IN SOCIAL SETTINGS
Eating in social settings can be distressing for autistic individuals, and individuals with eating disorders. With eating itself already being overwhelming, adding in other sounds, smells, and conversation can get really overwhelming.
FEELING OUT OF PLACE OR ALONE
One of the core features of ASD is social impairment, which can cause autistic people to feel out of place, or like an “other.” They don’t quite fit in with others, and the inability to eat in social settings doesn’t help. This can cause feelings of anxiety and make eating more challenging.
THE DESIRE TO FIT IN
Most people want to fit in, but for autistic individuals, it can be hard to know exactly how to. That’s why many — especially autistic girls, who are also underdiagnosed with autism — turn to diet culture in an attempt to fit in with the diet obsessed world around us.
Adopting the interests and behaviors of one’s peers is called masking, and it is something that autistic girls generally do more than boys. Masking by dieting or expressing bad body image is a trigger for disordered behaviors themselves. Masking in general is also so exhausting that autistic people report “exploding” or “burning out” by the end of the day, adding to the distress that can fuel an eating disorder.
Limitations and Challenges of Treating Eating Disorders in Autistic Individuals
Even though eating disorders and autism are related, it’s hard for people on the spectrum to find a proper eating disorder diagnosis and treatment.
There are many reasons why, including:
LACK OF AUTISTIC SPECTRUM DISORDER AWARENESS
On the whole, many autistic people — especially those who identify as female — are undiagnosed well into adulthood. This causes two problems:
- Those autistic individuals don’t understand why they think and do things the way they do.
- Treatment providers mistake autistic behaviors as ones that are driven by an eating disorder.
Without a proper autism diagnosis, an autistic individual cannot get the personalized, comprehensive care they need.
INSUFFICIENT PROVIDER TRAINING
Many autistic eating disorder patients report receiving care from uniformed treatment providers. As autistic people have trouble discussing emotions and engaging in social settings, they also struggle with traditional therapies. They may also do things like fidget as a form of repetitive movement, not as a form of compulsive exercise. Treatment providers may mistakenly view things like this as being resistant to treatment.
NOT FITTING WITHIN A ONE-SIZE-FITS-ALL APPROACH
A lot of the traditional eating disorder treatment setting is not designed for the neurodivergent individual. Treatment often involves individual and group therapy, group meals, constant changes in schedules, new people in and out of treatment — just a lot of stimulation and rapid change in general.
These settings don’t usually offer autistic people enough quiet time or space to take a break from constant loud, conversational settings. Some treatment settings do not allow you to wear headphones during meals, even though it would be helpful for overstimulation.
Meal plan providers may not recognize or work with autistic individuals who have food sensory issues. Non-sensory friendly food, to the autistic pain, is processed almost like pain, so that the individual not only has to handle the discomfort of the meal and the meal activities, but the pain of texture, color, smell, etc.
To be effective, eating disorder treatment centers and individual providers need to gain a more thorough understanding of what autism is, how it contributes to a person’s thought patterns and behaviors, and how to differentiate between autistic and eating disorder tendencies.
Related: This is what to expect throughout the eating disorder treatment process.
BUT THERE ARE FACETS OF AUTISM THAT MAY IMPROVE THE CHANCE OF RECOVERY
Autistic individuals are extremely determined when it comes to their special interests (i.e. the things they hyperfocus on). This can be a strength in recovery, when they find and can talk about their special interests outside of eating disorder thoughts and behaviors.
If you or a loved one is suffering from an eating disorder, take the first step today and talk to someone about eating disorder recovery or simply learn more about the inclusive, holistic eating disorder recovery programs we offer.
