Back from the Brink: An Autism Eating Disorder Recovery Story

Individuals on the autism spectrum are disproportionately affected by eating disorders which cause the highest mortality rates of any form of mental illness. Eating disorders tend to be more severe and prolonged in the autistic population and the longer they live with it, the harder it is to recover. This contributes to the autistic population having a shorter life span than neurotypicals.

One reason for the propensity towards eating disorders is dieting. Specific traits of autism such as attention to detail, fixation on special interests and mental rigidity make simple dieting veer into a dangerous disorder. For girls, adolescent anorexia nervosa is a common pathway towards an autism diagnosis. The actual science of dieting with its weighing of food, counting of calories and analysis of how to then burn them can become their special interest.

Cognitive rigidity can make ASD individual less gastronomically adventurous and thus, comfortable in a limited diet to begin with. Sensory issues, insensitivity to hunger, gastrointestinal problems factor in as well. For many with autism, their lives are marred by social isolation and bullying. Successful dieting gives them a feelings of control, predictability and personal empowerment. And in this society where thinness is valued as beauty, it’s a way to achieve a societal ideal.

People with eating disorders demonstrate difficulty identifying and coping with emotion, a condition called “alexithymia.” This leads to an inability to self soothe or ask for help. Researchers are finding a strong connection between alexithymia and eating disorders in females. The next scientific step is to see how alexithymia and not autism itself contributes to the ASD propensity for eating disorders, self-harm and suicide. Focused interventions to treat alexithymia may reduce these serious risks.

From a personal experience around these issues, my son was extremely underweight his entire childhood. He was emphatic about food textures and plating (no foods could touch one another). He ate the same foods ritualistically. A volatile child, every day was a challenge.

When he was thirteen, he reached a crisis point where he dropped so much weight as to become skeletal. To make a long story short, he was hospitalized for two months with Crohn’s Disease. I had never even heard of it until the doctor told me he had it. It’s a inflammation of gut wherein you cannot process food.

The doctors wanted to shut down his immune system with lifelong chemotherapy. They wouldn’t tell me the side effects, so I went to the hospital library and discovered rheumatoid arthritis and cancer to be the worse of a litany of negative outcomes. Terrified, I refused the first infusion of an indefinite number of infusions.

An independent naturopath who was visiting my son in the hospital told me that he should have low dose Naltrexone (LDN) and to beware because the doctors wanted to have my son and his brother taken away from me because I was against their treatment plan. LDN regulates the immune system and the naturopath bragged that she had met for lunch in Haiwaii with Dr. Jacqueline McCandless, the world’s foremost authority on LDN.

On a wing and a prayer, I Googled Dr. McCandless who was from California but had a clinic in Africa. I discovered that McCandless had launched a project in Africa giving LDN to infected AIDS orphans who were growing up healthy through her efforts. I found an email address for her and sent a desperate plea that I imagined to be like throwing a message in a bottle into the ocean. Miraculously, she responded within an hour and recommended Dr. John Green, an autism specialist in Oregon City, Oregon. The first thing Dr. Green did was give my son a food allergy test. My son was totally allergic to almost everything he’d been eating his whole life! Dr. Green put my son on the Specific Carbohydrate Diet (SCD) which eliminated all starch and refined sugar from his diet, in addition to the many things like peanut butter, milk, soy, egg white etc. that he was specifically allergic to.

Between the LDN and the new diet my 5’ 9” son went from 62 lbs. to 130 lbs. And he loved eating for the first time in his life. He has been in total remission from Crohn’s for ten years.

If you have a child with severe eating issues, it may be helpful to get them an ALCAT food allergy test that profiles 300 foods and tells which to avoid or limit. If nothing else, it will serve as a rule out, but it may also dramatically help.

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* Health-related information should not be construed as medical advice or a treatment recommendation for any specific condition. Only a licensed medical professional can properly diagnose and treat medical conditions. If you have any questions, please consult with your healthcare provider.