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How well someone recovers can vary with age. Adolescents who have both autism and anorexia are just as likely to recover as those with anorexia alone, according to a 2015 Swedish study, although they are more likely to struggle with ongoing psychiatric difficulties. Conversely, adults with autism and anorexia are significantly less likely to recover—perhaps, as Treasure points out, because their anorexic behaviors have become so ingrained.
Still, even if the information comes later in life, it can be valuable. Holly, 41, was diagnosed with autism roughly two years ago after a lifelong struggle with anorexia. Like Louise and Zoe, the Illinois-based mother of two was fussy about food as a child and, as a result, markedly underweight. As a child, she found that skipped meals brought her a sense of calm and control.
“It wasn’t until I got to middle school or high school that I had the cognitive development to understand that I could bring this state on deliberately,” Holly says. It was as a teenager that she began regularly skipping meals.
When a friend read a book by Temple Grandin, the well-known scientist with autism, she recognized similarities between Holly and Grandin. So Holly began to investigate, and her discovery that she, too, had autism changed her life. She had spent the past several years in therapy gaining and losing the same few pounds and never really making progress. After her diagnosis, she and her therapist worked together to help Holly tackle her eating disorder using a new approach. Instead of focusing on increasing the variety of foods she ate, they agreed to have her increase the amount of the food she did eat. They also reviewed their plan, point by point, at the beginning and end of each session. As a result, Holly began to gain weight and, just as importantly, not lose it later.
It wasn’t an entirely positive experience. Being labeled with autism left Holly with a profound sense of grief; she says it felt as though her lifelong efforts to be “normal” had failed. She is also angry that eating disorders are viewed as a quest for thinness rather than potential signs of deeper issues around food and social interactions. “Everyone just wrote off my quirks as ‘Holly being Holly,’ and I think all those years of starving myself have really changed my brain,” she says.
Still, the knowledge had an impact that went beyond her own life. As she went through the autism assessment, she recognized many traits in her then-10-year-old son. He, too, was later diagnosed with autism. Around this time, he also developed many of the habits that Holly had had as a child, such as picking at his food and eating only a few bites before declaring he was full. As a result, his previously robust frame shrank to skin and bone.
“I had to use what I had learned to help him learn to eat regularly even if he didn’t feel hungry or got full. I taught him how to read labels to make sure what he was picking had enough calories. It took a year, but now he’s back to growing as he should be,” Holly says. “No one ever did this for me.”