Tag Archives: eating disorders

Lady eating grapes

Eating disorders and autism–what’s the link?

From the outside looking in, perhaps eating disorders and autism couldn’t look more different. Supposedly, people with autism aren’t attuned to their emotions, whereas people with eating disorders are highly sensitive and turn to food/eating behaviours to cope. But an eminent psychiatrist says:

Strip off the misconceptions, and the two conditions are far more similar than anyone believed.

Janet Treasure, director, eating disorders, Maudsley Hospital, London

It is therefore unsurprising that research has found that in groups of people with long standing eating disorders more than 20% had undiagnosed autism spectrum disorder.

Similarities include fixating on small details, with difficulty seeing the bigger picture and the need for rules, routines and rituals.

On a personal note, well before I was making sense of my life through the lens of autism, it was clear my eating disordered behaviours began as I struggled with changes at puberty. I couldn’t cope with hormones causing bodily and emotional changes that I didn’t understand. I remember specifically thinking I wanted to try and keep everything the same.

An autistic person may develop an eating disorder due to the following:

  • Not being able to sense hunger, this is due to impaired interception.
  • Sensory problems with food e.g. texture, smell, taste, leading to limitations in food tolerances.
  • An intense/restricted interest of counting calories or other specific food related activities – these routine and rules become very difficult to change.
  • High levels of anxiety.
  • Unintentional lying related to food intake or exercise activities.

This could be the perfect storm for developing a restrictive eating disorder (anorexia) but some autistic people could turn towards food and binging/purging behaviours in order to manage their emotions.

When compared to neurotypical counterparts research shows that weight and body shape are less important for autistic people.

Clinicians have managed patients of this kind (girls and women on the spectrum with/without a diagnosis) by increasing therapy that wasn’t working, but they’re now seeing that they have different recovery needs due to their autism:

“We always had this subset of patients who didn’t do very well in group therapy, and our response was, ‘Well, let’s put them in more groups,’ It just alienated them even more; now we know better. Providing a small range of food choices, as well as clarifying rules and expectations, also tends to help people with autism and eating disorders recover successfully.

Craig Johnson, Clinical Director, Eating Recovery Centre, Denver

I, too, have often heard clinicians make similar comments. I can understand the thought process, if patients struggle with group therapy, it can be an incredibly helpful process; noticing and understanding one’s impact on others is important and powerful in society as a whole.

However, an autistic person, struggling with an eating disorder, isn’t struggling with their relationships with others, they’re struggling with understanding internal processes, emotions and, the need for routine and the resistance to change isn’t just a preference it’s a neurotype.

It’s all too common for women to get struck in the mental health system, to be diagnosed with depression, bi-polar affective disorder, borderline personality disorder or eating disorders and only in their 20s, 30s or 40s find out that they actually have autism.

For some, when they receive a diagnosis of autism and appropriate support, their eating disorder disappears, read about Savannah’s experience here. For others, understanding that their “autistic brain [is] obsessing about numbers, patterns and sensations” helps them have a better relationship with themselves, read about Carrie’s experience here.

Therapy

For me, autism has helped me make sense of so much! My anorexia was a desperate attempt to keep things the same, it was a way to (try and) escape a very confusing world where I don’t understand how to fit in and it’s now making sense as to why it was so hard for me to recovery (every time I did, my mental wellbeing would deteriorate) and why I needed so much personal therapy from someone who threw the rule book out the window.

The sad fact is that anorexia has the highest mortality rate, 1/5 people with anorexia will die early, from suicide or malnutrition. However, there is hope, by raising awareness of autism, management of the eating disorder is possible and could set someone free. Combination of specialist therapy and medication to aid with the high levels of anxiety will most likely be required.

How a global pandemic can trigger an eating disorder

Everyone is managing a changing world! It’s Mental Health Awareness Week and I’m writing this blog to give insight into the world of eating disorders, not to say “my struggle is worse than yours” but to say, you never know what someone else is going to through – most people have hidden struggles and it’s not always obvious what’s going to trigger someone’s difficulties. Measures imposed by our governments have been vital to keep us safe but at what cost?

Change in routine

A routine for many people can indicate safety. Most of us find a change in routine difficult but someone with an eating disorder, routine can be the difference between them eating enough/regularly each day or turning to disordered behaviours for comfort.

Encouragement to exercise everyday

When in eating disorder recovery, exercise can be difficult to manage. Many struggle with exercise addiction as a way to manage weight and recovery from this may include not exercising or restricting exercise. The UK government’s lockdown rules allowed 1 trip outside each day for exercise. If one of the few things you’re “allowed” to do each day is exercise, it can feel like you’re being told you “should” exercise everyday and this only adds to the battle already going on inside your head about what your should and shouldn’t be doing. How many adults actually exercise everyday?! Not many, but for someone recovering from an eating disorder, this is a minefield!

Supermarket stress

Recovering from an eating disorder can include a strict diet plan. Panic buying lead to limited stock and then restrictions on items we could buy. While to the average family, these restrictions may have been inconvenient and caused them to use alternatives. This may have caused chaos to someone with an eating disorder. If the food item you need is not available, this could have triggered days without food altogether. While the queues at the supermarket are essential to keep numbers within at safe levels, this could cause extremely high levels of stress for someone who already finds the trip anxiety provoking.

Encouraged obsessive actions

While washing our hands is vital to prevent spread of Covid-19, with the UK government telling us to wash our hands often, this can play into the obsessive compulsive mind of someone struggling with an eating disorder prompting further ritualistic behaviours around food.

The wrong type of “vulnerable”

Those most at risk of dying from Covid-19 have been put on a vulnerable list in order to ensure we can keep them safe from catching the virus. This has meant that some support systems are no longer available for other people who usually use them. For example, people who usually use the online supermarket delivery systems haven’t been able to get slots. Going to a supermarket, for some people recovering from an eating disorder, is simply impossible. What do you do if you can’t get a delivery slot, because they’re reserved for other people?

Lack of therapy or online therapy

Therapy is a vital part of eating disorder recovery. Some agencies have completely shut down due to lack of resources. Some, fortunately have been able to continue online. Some people may prefer this and there are benefits, such as not having to travel. However, at times technical hitches can delay sessions and talking through a computer means some subtle communication is lost. I’m not alone in having a violent dislike of seeing myself on screen and a therapists sensitive use of physical touch is completely lost.

While the social distancing and lockdown measures have been vital to keep everyone safe – the repercussions on those with internal mental struggles, I have no doubt, without additional support, will be extremely long lasting.

How do you choose what to eat?!

TW – Trigger Warning – this post contains discussion about food and anorexic thought processes and may be triggering to people to some people. Please exercise causing if you choose to continue reading.

Many of you will know, I recently fractured my jaw and this has led to a severely restricted diet as I had metal work holding my teeth tightly shut to pull my fragmented mandible into correct alignment. At best during the last 9 weeks I’ve been able to get a teaspoon into my mouth and manage smooth soup, at worst, it’s been smoothies and milkshakes through a straw. Unfortunately, this has led to weight loss and the restriction has triggered some familiar thoughts linked to previous experience of anorexia.

2 days ago, I was given fantastic news, I can now open my mouth fully and I’m able to chew food again! I’ll be having the metal work removed within a few weeks so the end of the ordeal is finally in sight!

The hospital has a Costa and I’d been dreaming of enjoying cake from there for weeks! But…standing in front of the array of cakes I simply could not decide, I realised, I had no idea how to choose! The part of my mind that was looking after my fractured jaw needed to choose something soft and easy to chew (rational wise-mind), the part of my mind controlled by anorexic urges was frantically trying to calculate the calories (automatically) but there was a part of me that simply wanted to choose something I liked!

I’d thought about trying to plan for this moment but I’d not wanted my hopes to be dashed. The recovery of my jaw had not been a smooth road so I thought it was best to protect myself and be prepared for not getting the all clear news.

So, how do I choose?!

I love carrot cake but this one had walnuts in it and I’d been advised to avoid nuts at first. I love chocolate cake but I’d been drinking a lot of chocolate milkshake so I wasn’t too enthusiastic about eating a chocolate cake right now. Some of the cakes looked a little hard for the first thing I was eating (pastry/tiffin/crunchie etc). As I gradually ruled out more and more cakes, the choices were reducing which was helpful…or was I making excuses to avoid calories? As I stood there with the waitress waiting for my order, the pressure was on, anxiety raising in my chest, every fibre in my body wanted to turn and run…

I wanted cake, but at the same time, I didn’t want cake if it was going to be this hard! I wanted to enjoy this experience but it was becoming too stressful!

As I’ve noticed a lapse in symptoms of anorexia, fortunately I’m able to catch myself and make a conscious decision not to go down that route – I really do not want to experience that dark hole ever again! But it’s reminded me of some of the difficulties I thought it would be interesting to write about them so people might understand what it’s like to try and recover from an eating disorder.

I, like most, had a dietitian support me to make changes as I tried to put on weight and break free from anorexia. I was advised to make changes such as increasing portion size and varying the foods I ate. So, for example, I was advised to add a sandwich to the fruit I was eating at lunchtime. Simple enough, right?! But, how do I choose which bread to buy If you’ve not eaten bread for years? Have you seen how many types of bread there are in a supermarket?! Up to this point I‘d chosen food based on calorie content, an anorexic mind then persuades its host that it’s its personal choice to want that specific brand. At my worst, I would visit multiple supermarkets for specific brands of specific foods, it didn’t feel like a choice, it was a compulsion.

Confused in the supermarket

So, trying to recover, standing in the bread aisle:

  • Do I go for the most eye-catching brightly coloured packaging? Sounds weird, but it’s a way of choosing!
  • Do I go for the “moral high ground” and choose organic?
  • Do I want large slices or small slices? Smaller, right? Oh no, hang on, that’s probably a disordered thought… But, why would I go for large slices?!
  • Do I like seeded or granary? Is wholemeal different from wholewheat? How will my gut respond to fibre?
  • Do you want a half loaf, just in case you don’t manage this challenge you don’t want to waste too much? Or should I assume success?
  • How about cost? Is more expensive bread nicer? Should I calculate cost per slice or per portion? I don’t want to get a taste for expensive bread, do I?

As soon as you start comparing breads, it’s all too easy to compare calorie content and bam, easy, decision made. Who’s going to bother going through the palaver of the above when it’s so much easier, simpler and far less anxiety provoking to just pick one up based on calorie content?!

And that was just bread for a sandwich, don’t get me started on the margarine/butter debate or sandwich fillings!!

It’s important to remember people trying to recover from other eating disorders may choose food based on, for example, how comfortable they are to binge/purge or how the food makes them feel when they eat it (emotional eating or eating to avoid boredom). Any eating disorder restricts your ability to choose food based on a) whether you like it and b) whether it has a helpful nutritional content for what you need.

It’s so hard to remember, when in this state, food has no moral value, no food is good or bad, food is fuel with nutritional value and should be consumed without guilt or shame. Recovery is hard when surrounded by modern diet culture that normalises, even endorses, unhealthy restrictive eating habits.

When you’ve been absorbed by an eating disorder, you lose touch of your likes and your dislikes – not only can you not remember them but you don’t think you ever had any, beyond preferring foods with a lower calorie content. “Seriously, I love cucumber and water for lunch, it’s just what I prefer!” Yeah, right!

Fortunately, my current situation has only been for a few weeks so I can remember the foods I like, I will be able to fall back into my healthy habits easily. When you’ve been surrounded by an eating disorder for a long time, many years for most, sometimes decades, the disordered habits can be so ingrained that it’s hard enough to even imagine things could be different and it can feel impossible to go through the process of change.

I’m here to say, change is possible, stepping out is hard but once you’re broken away from food rules and rituals, freedom tastes fantastic!

You are never “good” or “bad” when it comes to food. Food has no moral value. It’s just food.