Monday, 3 July 2017

Hidden in Plain Sight: Orthorexia in the Autism Parenting Community

“You don’t do the B12 shots?!” He looked at me incredulously. “You have got to try the B12 shots!”

It’s just another day at the playground in my city. Just another missed connection with another parent. Another recipe for a supposed autism cure, and an awkward silence where I try to think of something to say that won’t offend him but yet will stop the conversation. Something… nice. Something that won’t make him defensive, because I’m hoping that our kids can still play together. 

“Hmm, I’ll look into that,” I say. He looks unsatisfied. I think he wanted me to get excited.

Wheat-free. Paleo. Supplemented with milk thistle. Supersized probiotics. Herbal teas that would make a dead man wretch. “Alkalization”. No to sugar, to additives, to pizza, popcorn, to anything white. No oxalates, no heavy metals… the book of no goes on forever. These diets, far from ordinary variations, are extreme. They don't workThey make autistic kids feel broken. They can foster eating disorders. At some point, they become an eating disorder.

But our community is mostly silent about it. 

What is orthorexia?
Orthorexia was first identified in 1996 by Dr. Steve Bratman, who had grappled with it himself. “For people with orthorexia,” he states: “eating healthily has become an extreme, obsessive, psychologically limiting and sometimes physically dangerous disorder, related to but quite distinct from anorexia. …While a person with anorexia focuses on weight, a person with orthorexia obsesses about purity.” (If you think you may be suffering from orthorexia, please click here to learn more.)

According to the National Eating Disorders Association (NEDA), orthorexia “appears to be motivated by health, but there are underlying motivations…compulsion for complete control, escape from fears, improving self-esteem.” Social isolation often goes along with the disorder. However, in the autism parenting community, there is a strong social media component to orthorexia, because it is tied to a “cure”.

Orthorexia can also be a family disease, propagated by parents and handed down to children. For families with autistic children, orthorexia can occur to varying degrees, motivated by the desire to supposedly cure or “recover” the child through restricting foods and using large doses of supplements to supposedly bring “balance’" back to the child or to “detoxify”. 

Orthorexia, and its resultant isolation, can be devastating. As Bethany Sheldahl wrote in her essay How Diets to Cure Autism Gave Me an Eating Disorder and Internalized Ablism, “it took me years to stop pathologizing myself.”

Orthorexia in our community
There are some markers for orthorexia that distinguish it from other nutrition choices such as avoiding sugar or being vegan. What sets orthorexia apart from these normal eating variations is that the lifestyle is motivated by fear. It also tends to involve an element of evangelism that’s absent from other choices. 
In autism families, it can take on a particular tone:

Imagining a disease…and a cure. 

Orthorexic parents of autistic kids may take the view that their child can be fixed and cured of autism using a restrictive diet. Their child's autism, according to this model, was caused by an external force (parents will often call it a toxic exposure) for which the parents feel a misplaced remorse or guilt.

We don’t know the cause of autism, but a parent with orthorexia may create a false narrative that it was caused by something they did (e.g., vaccinate) and invest themselves with the imaginary power to undo it through a dietary cure. Then the sunk cost fallacy may prevent them from relenting that their “cure” isn’t working. In order to keep on believing, they use their personal stories to try to evangelize others who can then reaffirm the false narrative. 

Trying to fix a past mistake. 
Orthorexia is an amplification of the natural parenting desire to want better for our children than ourselves: but instead of a simple choice (e.g., encouraging kids to eat veggies) it involves a complex system of prohibitions for their child (e.g., can’t eat a slice of cake at their best friend’s birthday party).

Sometimes the so-called mistake the parents want to fix involves a negative encounter with Western medicine, other times a lifestyle choice or a factor from the parent’s childhood. Shadowy figures may be involved in the story. Orthorexic arguments build off the scaffolding of healthy skepticism to promote conspiracy theories (e.g., a fact like "Drug companies seek profit" turns into "THEY are trying to kill us/cover up the autism plot.") This belief system often leads to social alienation, which perpetuates the disorder.

Rigid: no grey area.
Lots of people read Wheat Belly and try to lose weight by cutting out wheat. Lots of people avoid pesticides due to environmental concerns, or say no to a candy bar. But not a lot of people become filled with terror if their child takes a bite of their friend’s sandwich, or state (in front of their child) that he is having an autistic meltdown because he ate a cheese stick. 

From that vantage point, nearly anything that happens in the autistic child’s life is "caused" by food—even developmentally-appropriate behaviour. “I’m sorry he’s crabby,” a mom once said to me, “but he had the wrong foods for breakfast today.” (Her child was three years old and it was one of the hottest days of the summer.) The deeper into the belief system the parent goes, the less tolerant they are of “mistakes” and the more rules in place for what to consume/not consume. This rigidity places pressure on the child to perform under the new diet (no more meltdowns, kid! You’re cured!) rather than showing the grace, compassion and practical planning which are essential to parenting any child.

Ready to save you.
Evangelism is a hallmark of orthorexia, using personal stories to try to evangelize others and thus maintain a community that reaffirms the belief system. In the autism parenting community, orthorexia often becomes highly socialized using social media (and sometimes on the playground, too).

If you find it hard to talk to a parent without the topic of food toxicity coming up, that’s another clue of an unhealthy obsession. For example, if you hold out a McDonald’s french fry to a typical vegetarian child, they may say no thanks. But if you offer a McDonald’s french fry to a child in an orthorexic family, you will get a lecture. The parent (and the child) may try to frighten your child too.

Talking with our kids

If you are in social situations where there is a lot of talk about cures and special diets, take a moment to educate your kids. Remember:

Your child hears you. You are modelling healthy approaches to neurodiversity through your parenting as well as your social relationships. Don’t feed someone's euphoria about the latest fix or cure, especially not in front of your child. They will hear you.

Talk as a family. 
Let your child know in as many ways as you can that being autistic is not an illness. Talk about what sickness is and isn’t. Tell the story behind the therapy/support choices you have made (what you said yes and no to) and your perspective on it. If you can, frame it in terms of your own family, rather than in opposition to someone else.

Don’t normalize. Unfortunately, the parenting community has kind of normalized orthorexia. Discussions of extreme diet choices float through our support groups and meetups without a word of concern. I can’t even count the number of parents who have tried to give me “advice” on what my child should eat to make him less autistic (and right in front of him, too…) 

In trying to support each other as a parent community, we stay silent even when extreme views are shared because don’t judge. Unfortunately our community's code of silence is perpetuating a problem, one that is hidden in plain sight.

Food exclusions don’t cure autism or the “symptoms” of autism. They are, rather, a marker for the rather strange times we live in, where people’s obsession with what they put into their bodies (and what others put into their bodies) has reached a fever pitch. We are all vulnerable to internalize the negativity about autism; to feel tempted to exert too much control in the service of “helping” our child; to feel self-conscious that we are not “doing enough”…that’s why the people selling cures have made such a deep footprint in our world. 

Let's march that ideology out the door of our homes. We will all be healthier for it.