This article originally appeared on Tonic Netherlands.
For most people, cooking, eating, and buying groceries are a normal part of everyday life. They're essential activities, and with a little bit of luck, you won't hate doing them, and you'll ultimately eat something you like.
For people with autism, however, these seemingly mundane tasks can be huge obstacles. Craving structure rather than a varied diet, being afraid to try new things, and having very specific preferences for particular products are only a few of the things people with autism have to deal with.
My sister Jorien is currently training to become a dietician. She's also autistic. Jorien has researched the effect autism has on dietary patterns and created a so-called "intervention plan" with the goal of stimulating adults with autism to adopt healthier eating habits. This type of plan was necessary: Due to their specific eating preferences, people with autism often don't ingest all of the nutrients they need to stay healthy.
According to the Dutch Association for Autism, about one percent of all Dutch people are autistic. To put it in perspective, that’s roughly 190,000 people. And about half of those people experience difficulty eating, says Karen den Dekker, an educator who specializes in helping people learn to cook for kids and adults with autism.
Issues with food can manifest in a myriad of ways. Dekker talks about a boy who only ate baguettes, potato chips, and fries—all crispy foods. To expand his dietary choices, she let him try other crunchy foods. “The senses of people with autism are often more finely attuned, so the taste, texture, and colors of food can be difficult [for them]. They end up choosing only those foods they don’t have any issues with, and that can lead to a very monotonous diet,” Jorien says.
Bianca Toeps, a photographer and blogger, recognizes this. “I eat a lot of coin-shaped licorice, especially from [the Dutch brand] Klene," she says. "I read that certain things, like soft candies and ice cream, create a pleasant mouthfeel for people with autism. The positive impulses created by the food can help when you feel overstimulated. That’s what coin-shaped licorice does for me, because it melts so nicely and glides around in my mouth. I love that all the pieces of licorice have the same shape, because it gives me a consistent sensation in my mouth.”
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When Toeps was 19, there were days when she only ate candy and coin-shaped licorice. She then spent eight months in therapy partly to treat a supposed eating disorder. She hadn’t been diagnosed with autism yet, but she thinks someone should have noticed something back then. “I had a very atypical eating disorder. I didn’t necessarily think I was fat; but I was obsessed with numbers. I wanted to reach a specific number on the scale. And I was afraid to eat certain things.”
Difficulty shopping is another side effect of being overly sensitive to stimulation. The music blasting from the speakers at the supermarket is undoubtedly enjoyable for some, but it doesn’t help people with autism to focus. Supermarkets can also get very busy—there are lots of beeping noises—and the number of choices can be overwhelming. Jorien has returned from a shopping trip with a type of fruit she was unfamiliar with; she bought it while feeling overstimulated in the store.
People with autism can also be less sensitive to external stimulation, meaning they either won't feel hungry or full after a meal. In this case, they'll either end up eating too much or not eating at all when they actually should, which can cause weight loss or gain. Jorien says this appears to be one of the least known issues when it comes to sensitivities around eating and food.
The aftereffects of a food binge are also harder to anticipate for people with autism. “They're mostly focused on living in the ‘now’—satisfying their immediate needs without seeing the long term consequences,” Jorien says. “Theoretically, they understand that unhealthy food affects their future health, but they don’t have as many feelings about that and insight into it as people without autism do.”
“Sometimes I’m not doing so well for a while, and that has a negative effect on my dietary habits too,” Toeps says. “I’ll have cornflakes for breakfast, lunch, and dinner, for instance. But that’s a dramatic example and I'm aware that it’s not a good idea. It’s this kind of downward spiral I find myself in. Because of the bad food, I can’t think as clearly, which causes me to make bad decisions. So I keep eating poorly.”
“I also know people who ate carrots and didn’t feel good later,” Dekker says. “Consequently they never eat them again, because they have a bad memory. They can’t separate those carrots and the feeling of being nauseated.” This is because people with autism think very differently than people without autism. They'll associate the carrots with feeling sick, which can lead to a fear of carrots—or any other food. This different type of thinking goes a lot further than the symptoms we generally associate with autism, like avoiding eye contact or being socially awkward, which is usually how autism is portrayed in films like Rain Man and TV shows like Netflix’s Atypical.
A lot of research has been done about kids with autism and issues with food, but the same can’t be said for adults struggling with the same problems. “What I have noticed up until this point is that when people with autism struggle with food, these problems can have completely different causes than when people without autism have food issues. Health care professionals, however, think these problems can be treated similarly.”
Toeps’ case is an example of that. She was only diagnosed with autism after being diagnosed with an eating disorder first. Her issues with food didn’t match the problems other people were experiencing, so theoretically they should have been treated differently—which didn't happen. This begs the question: How should it be done?
“First, I always assess which senses are being overstimulated while eating,” says Ilse van Heumen, a dietician who specializes in food issues among people with autism. Does the patient dislike the sensation caused by a specific food, is it the social circumstances that surround the food, or do they think the food should look a certain way? The answers to these questions determine the approach she uses to treat her clients. To that end, clarity is always the first priority. She makes sure the appointments always start on time, she's up front about how long a session will take and what will be discussed, and she presents a very clear road map for treatment.
“At the moment, I’m working with a group of teenagers who have expressed a desire to eat more vegetables. The most important reason they don’t do so right now is because they're afraid of being overstimulated: What if they don’t like the food or if makes them vomit? With them, I stick to a very clear roadmap. First, they smell a piece of a vegetable, then they touch it with their mouth, take a very small bite, and keep it on the tip of their tongue. This way, you take small steps, until ultimately you succeed.”
My sister Jorien is currently able to assist people with these kinds of issues by helping them adopt healthier eating habits. “It’s beautiful to see people," she says, "who with a bit of help, are perfectly capable of rearranging their own dietary habits.”
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