Autism & Eating

For The Art of Autism and Proud2Bme, I wrote this blog about the challenges around eating that persons with ASD might face. An abridged version (in Dutch) was also published in Lister magazine UP.

“Armansky’s star researcher was a pale, anorexic young woman who had hair as short as a fuse, and a pierced nose and eyebrows. She had a wasp tattoo about an inch long on her neck, a tattooed loop around the biceps of her left arm and another around her left ankle. On those occasions when she had been wearing a tank top, Armansky also saw that she had a dragon tattoo on her left shoulder blade. She was a natural redhead, but she dyed her hair raven black. She looked as though she had just emerged from a week-long orgy with a gang of hard rockers.”

Fans of “Millennium” will surely recognize the above description: it’s about Lisbeth Salander, the heroine from the books (and the films based on the books) by Stieg Larsson. Lisbeth is brilliant, unadapted, stubborn, independent, funny and..: “different” with food. Whereas all the other characters in this franchise eat regularly and diverse, visit restaurants and cook healthy meals, Lisbeth is also a “misfit” when it comes to her diet. Her way of dealing with food may look like a classic eating disorder (“a pale, anorexic young woman”), but in my opinion it has a different origin. Diagnosing fictional characters is of course a tricky business. Yet Lisbeth – as presented by Stieg Larsson – would score high on the Autism-Spectrum Quotient. Using Lisbeth as an example, in this blog, I would like to share some of my thoughts around autism and eating problems.

Autism & Eating Problems

In people with autism – officially Autism Spectrum Disorders or ASD – many things work just a little differently than in average people.

One of the problem areas for me is eating. For as long as I can remember I have had trouble with regular, sufficient (= not too much!) and healthy food. And that is something I immediately recognized in the descriptions of Lisbeth. “She had, Armansky was convinced of that, no eating disorder, she seemed to consume all possible junk food”. But… That boundless consumption of all possible junk food can indicate a disturbed way of dealing with food, especially when you look at how Lisbeth alternates that habit with longer periods of not eating anything at all (and only drinking locks full of coffee). Awfully recognizable – even for me that unhealthy eating pattern will always remain a trap. But since I am more aware of where that “weird eating” of mine comes from, I can arm myself against it. And because there is a lot of overlap between ASD and eating disorders – such as perfectionism, black-and-white thinking and the need for structure – I hope that this piece also makes sense for neurotypical people who are struggling with food and eating.

“Research shows that eating problems are common in people with ASD,” writes autism expert Annelies Spek. “When it comes to eating disorders, we even see that a quarter of women with anorexia nervosa also have an autism spectrum disorder. Despite this, little is known about how eating disorders occur in humans with ASD and what helps them to heal from it.”

The internet is, of course, an infinite source of knowledge, shared, for example, by people with similar experiences. Through fora and social media I’m in contact with other people – both with and without autism – who struggle with their diet. And so I also discovered that eating problems in people with ASD sometimes have different causes than in neurotypical people.

As for me, my strange eating pattern comes from characteristics of autism, such as my difficulty with planning and poor executive functions, my sensitivity to over-stimulation, my not getting through signals from my body properly, my clumsy motor skills (cooking and chewing are difficult, people), my not knowing how much food my body needs, my predilection for repetition and my great desire to “belong”. Below I will discuss these aspects.

Food & Executive Functions

Many people with autism have problems with their so-called “executive functions.” You can see them as the conductor who directs everything – the orchestra of your actions and the choir of your thoughts. The conductor in my head always lets me improvise a little – spinning thoughts and letting go of memories is hard for me, so since I got sick as a child after eating broad beans, I can’t eat broad beans anymore. You also need executive functions to plan, organise, keep an overview, switch from one activity to another and more. I can’t do all that very well and that also has consequences for my eating behaviour. Choosing a recipe, shopping and cooking feel like running a marathon. Just like Lisbeth, I live and eat in the moment. Is there a bag of chips here? Or two or three or ten? Without being able to oversee the consequences of my actions I eat them all at once. Because of the nice taste, the nice crackling feeling, to comfort myself, against the empty feeling inside or “just because”, without thinking about it.

One of the sources of inspiration of writer Stieg Larsson (next to his niece, who had anorexia) was Pippi Longstocking. From her, Lisbeth seems to have adopted her red hair as well as her impulsive eating style: Pippi never had to empty her plate of Brussels sprouts; she preferred to use the golden coins from her treasury to buy the whole candy store. Yup – same here.

Stimulation Sensitivity

Autism often involves a slightly different sensitivity to stimuli. For me, sounds are often too loud and lights too bright, for example. To me, a supermarket is like a fun fair in terms of stimuli, so shopping costs much energy. And eating itself is also an experience. If food gives too many stimuli, you can decide not to do it – in the DSM V this is called an “avoiding/restrictive food intake disorder”.

As a child I always let my supper cool down completely, otherwise it felt too hot on my teeth, on my tongue and in my stomach. I still prefer food that you don’t have to chew. And I’m having a hard time eating if there’s someone around who makes eating noises. Stimuli from my own body often don’t work very well either. I can go crazy from “itchy hairs” (especially in my face), which others don’t seem to see or feel, while I kept on exercising on a broken foot (I did feel something crazy, but I didn’t know what it was). You can imagine that I often don’t notice stimuli connected to eating.

In essence my body is not much different from that of a neurotypical person – in case of a food shortage I also produce the hormone anandamide, which attaches itself to the receptors of the hunger centre and stimulates the hunger nerves – only, I feel those stimuli much less. Just like Lisbeth totally forgets to eat when she’s hacking, I don’t notice that my body is hungry until I get dizzy.

Some people with autism have it the other way around, by the way, they are constantly hungry. As Judith Visser writes in her book Sunday Child: “It was as if my stomach was constantly crying out for food. I needed it, all day long, otherwise my brain would drain like a flat tire.”

Yet overeating is also lurking in my face, because when I like something I don’t notice it when I have eaten enough – until I get nauseous. And just like Lisbeth, who doesn’t eat anything else before or after a kickboxing training, I never know what my body needs. Unless I count calories – numbers give me something to hold on to – which I really don’t want.

Social Contacts & Body Image

According to Annelies Spek, for people with autism “most of the time it’s not about what others think of them, as is normally the case with anorexic people.” That certainly applies to Lisbeth Salander, but not to me.

My great desire to “belong” has certainly not helped me to develop a healthy diet as an adolescent. A group of girls from the first grade wanted me to go and steal candy bars at the gas station, so we all ate them one after the other. And in the second grade, two classmates taught me how to stick your finger down your throat. In high school, “being good at dieting” gave me status in the new group. Also in my love life, eating became complicated. One ex loved food and eating, so together with him I gained quite some pounds. The ex after that found me too fat, so I put myself on a (much too) strict diet. Because I find it difficult to oversee things, I cannot see whether I am gaining or losing weight in a mirror. And my body image (and therefore my self-image) often depends on what others say about it.

Because a lot of people with autism have trouble with changes, it is often difficult for girls with autism to accept that they get feminine forms. Underweight and lack of menstruation also give less stimulation and having control over your food can feel like getting a grip on your life. Like Lisbeth, you can pretend to do not have a body. (If this were a scolarly article, I would describe Lisbeth Salander as a “post-gendered cyborg” – she is not a woman, she is not a man, she lives in symbiosis with her computers).

Moreover, my difficulty with changes and the corresponding predilection for repetition is also a pitfall: variety in your diet is healthy, but if I’ve cooked something tasty, I tend to eat only that one dish from then on – the familiar taste and texture give me peace of mind. Also “special interests” (the autistic “fieps” or obsessions) can influence your eating behaviour. Because of my fiep on cakes and cupcakes I can easily gain weight, because of my fiep on martial arts I have to eat more. And a good friend of mine, who is also on the spectrum, was so keen on healthy eating that it became compulsive, in the way Eric van Furth describes it as “Orthorexia Nervosa.”

Tips & Tricks

1. Daily schedule and routine.

A good day structure for me includes time for sports, music, my cat and writing – all great things to do, so I don’t snack out of boredom. On my schedule I also write my meals, with tick marks if I succeed. But in order to make such an eating schedule, you need to know roughly what you need to eat. On www.healthline.com you can get a indication, based on your age, gender and exercise pattern. With that as a basis you can eat healthy, varied and tasty!

2. Weekly planning.

I also have a weekly schedule in which every evening meal is planned. Cooking together with others is a fun and cheaper way to learn new recipes. Because I plan ahead, I also have room to think about healthier alternatives, such as wholemeal bread and pasta, brown rice, low-fat dairy, drinks without sugar. I choose products with as few additives as possible (just check the labels to see if you recognise all the ingredients), take healthy meat substitutes (few sugars and fats, 20% protein) and go for homemade sauces and soups – without packets & bags. The latter also applies to breakfasts, by the way, prefer curd cheese with fruit rather than chocolate cruesli.

3. Meal prepping.

In the words of lifestyle blogger Elise Cordaro: “Planning the menu for the whole week and cooking in advance is the only way for me not to have to live on crisps and cookies”. And the routine of every Friday “cooking ahead” gives me a lot to hold on to. The internet is full of quick and easy recipes for healthy meals, just store them in the freezer with a label on it (“potato cookies, 2 portions”). Many vegetables are also available frozen, often even pre-cut, which is handy to keep in the freezer and to experience something quickly. You can also freeze baked goods – e.g. apple pie – so you have less stress on the day your guests visit!

4. Dining list.

If I have busy days ahead of me – for example with a guest – I prefer to prepare everything, not only dinner, but also breakfast, lunch and snacks. That saves you from stress in the shop and gives you space in your head. As peer support worker Lotte writes on Proud2Bme: “A food list provides a handhold and ensures that fewer choices need to be made about what to eat or not to eat. This can remove tensions and stress around eating”. There are many ready-made food lists online, but it is even better to make your own list – for example with a dietician – completely adapted to your eating preferences in terms of smell, taste and texture.

5. Relax.

Reward yourself regularly with something tasty to enjoy. It’s not about eating only healthy things, it’s about a healthy balance. My ‘guilty pleasure’ is a french fries with peanut sauce and mayonaise (yup…) and that’s what I eat once a month. As dietist Marloes of OptimaVita.nl writes: “Eating chocolate and chips is quickly seen as ‘bad.’ Pity if you ask me, because I can’t hurt these products in small quantities.” Don’t get too cramped and don’t scold yourself if you don’t manage to eat healthy for a day. It is difficult and it is already super good that you want to try it!