Louise Harrington was starting to doubt that she had anorexia. She knew she was shockingly underweight, and she desperately wanted to gain at least 30 pounds. She had no desire to look like a model. She had no phobia of fatness. She wasn’t afraid to gain weight. She didn’t have any of the typical body image worries that overwhelm many people with anorexia.
Instead, what trapped Louise in a haze of malnutrition and compulsive exercise for more than 30 years was that eating too little and exercising too much blunted the feelings of overwhelming anxiety that threatened to drown her. (Louise asked that we not use her real name.)
The psychologists and psychiatrists she visited couldn’t comprehend what was driving her behavior. When she was in her 20s, one doctor told her she couldn’t have an eating disorder because she didn’t have a fear of fatness. Other therapists said she was either lying or in serious denial. The assumption that her anorexia was necessarily driven by a desire to be thin further frustrated and alienated her, so she stopped trying to get help.
It wasn’t until she turned 40 and she was fainting regularly at work, and was in and out of the hospital with malnutrition, that Louise tried, once again, to get psychological help. For the first time, a psychiatrist connected Louise’s longstanding social difficulties with her rituals around eating, and brought up a possibility that no one had never mentioned: autism. She was diagnosed with autism shortly thereafter.
“The diagnosis has helped me to understand why I struggle so much with life,” Louise said in an email interview, her preferred form of communication. It also helped her understand her eating disorder, which functioned not as a way to lose weight but rather to feel in control of her anxiety and the world in general. In fact, if it were possible to under-eat and over-exercise without losing weight, she says, she would do it. The only thing Louise seemed to have in common with others who have anorexia was near-stratospheric levels of anxiety.
On the surface, autism and anorexia couldn’t seem more different. People with autism are supposedly not attuned to the emotions of others, whereas people with anorexia are commonly thought of as oversensitive young girls hell-bent on fulfilling cultural ideals of thinness. But strip off the misconceptions, and the two conditions are far more similar than anyone believed, says Janet Treasure, a psychiatrist at King’s College London and director of the eating disorders program at Maudsley Hospital in London.
“I must admit I was skeptical at first when I read about the links,” Treasure says, “but when we were looking at various aspects of vulnerability to anorexia, such as thinking styles and emotional styles, they were actually very similar.”
Emerging research shows that people with either condition have difficulties understanding and interpreting social cues, and tend to fixate on tiny details that make it difficult to see the big picture. What’s more, both groups of people often crave rules, routines and rituals. Genetic studies also suggest overlaps between autism and anorexia.
Anorexia is not the only eating disorder connected to autism. Although the majority of research on eating disorders in autism has been focused on people who routinely eat too little food, some women with autism may also turn to food for comfort.
Some estimates hold that as much as 20 percent of people with enduring eating disorders have autism. Because girls with autism are frequently underdiagnosed, it’s often an eating disorder that first brings them to clinical attention — although men and boys with autism can and do develop eating disorders, most of the research and clinical attention has focused on girls and women. This gender bias has led some to refer to anorexia as ‘the female Asperger’s.’
Recognizing that someone has both autism and an eating disorder is only the first step. Few psychologists have expertise in helping people who have both conditions. Historically, eating disorder treatment mandates group therapy, but people with autism often have difficulties with social interactions. This treatment also requires that the individuals make dramatic changes in their eating routines, often in a short period of time. But some people with autism find it challenging to meet this demand because of their insistence on sameness. As a result, many people who have both autism and anorexia find it difficult to recover from their eating problems, and are less likely to recover than those who have anorexia alone. Louise and others like her are demonstrating that although the overlap between autism and anorexia is more common than anyone realized, there are still few effective treatments for this dual burden.