Tag Archives: bulimia

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.

Young person looking at their phone

Can a film about eating disorders be made “responsibly”?

Recently, while in conversation about the good, the bad and the ugly of mental health portrayal in film, I said, “although it divided the eating disorder (ED) community, I thought , To The Bone was a good movie”. The person I was speaking to responded saying that they didn’t think it had been made responsibly because it showed eating disordered behaviours. “Fair enough”, I thought, everyone’s entitled to their opinion. Read my thoughts on To The Bone here.

To The Bone character Ellen looking concerned at weighing scales

I’ve been reflecting on this and I’m wondering why ED’s are treated differently to other mental illnesses when it comes to portraying behaviours in the media.

There seems to be a fear that ED behaviours can be caught and that if the media gives hits and tips, a “how to…” develop an ED, maybe there’ll be an epidemic. No one thinks that a portrayal of a psychotic episode with someone experiencing a delusion they can fly will lead to an epidemic of teens jumping out of windows, pretending they have bipolar disorder!

I’ll spell it out, if you show someone doing sit-ups, running, counting calories or carrying out food rituals, you’re not going to give anyone ideas about how to get anorexia. If someone is predisposed to anorexia, they will be able to come up with these weight loss schemes all by themselves!

Board of sliced food

I’m not naive though, I know young people can be influenced by what they see. We are seeing a concerning rise in self harming and we need to consider whether talking openly about these things is making such behaviours seem more acceptable. We’re in a precarious position in trying to raise awareness of all mental illnesses. While we want to normalise discussion of mental illness, it’s important that mental ill health does not become normal!

Of course, there needs to be careful consideration when depicting any illness; there needs to be sensitivity given we’re making other people’s pain into, let’s face it, entertainment.

It is important to recognise these imagines may be triggering for people who are already suffering but there comes a point where it’s your responsibility to decide if you can manage this. The media company can put a warning at the beginning of the content, they can do no more. If someone is in the mood to trigger themselves, there’s plenty of content available.

Of course, care has to be taken when showing particular behaviours to show the reality and not to glamourise it. Anorexia isn’t about getting thin, then getting care and attention. Doing sit ups with a boney spine, you will get painful bruises. I even started to get pressure sores on my buttocks. Also, there’s the everso attractive lanugo – excess hair to keep your body warm. Nothing about eating disorders is pleasant. To The Bone showed the ugly side to eating disorders, the guilt, the shame, the grief, the physical and emotional turmoil, it was not pretty.

Young lady liking sadly at a small slice of bread and glass of water

If someone has a genetic susceptibility and environmental factors lead to them being on the cusp of an eating disorder, they will not need hits and tips. I, for example, had no media input to my eating disorder, I naturally knew how to lose weight, I cut food out of my diet and I moved more. Food rituals develop as a way to reconcile external pressures with internal turmoil – if I absolutely had to eat in front of someone, if I cut my food into factors of 3, it was more manageable (for example).

If I’d watched a film depicting eating disorders accurately when I was struggling as a teen, I think I would have felt less alone and might have felt able to seek help sooner.

We’re relying in mainstream media to bring the unmentionable and the unexplainable into the open. If they don’t show behaviours, if they gloss over them with clever edits and subtle hints, they’re not giving an accurate portrayal and this would be unhelpful and they’d be criticised. It’s never going to be easy and it’s going to divide opinion but at least we’re talking about it!