“I haven’t eaten a crisp since I was 12.”
Twenty-eight-year-old Laura Andrews lives in Cardiff and works for the civil service. She was diagnosed with anorexia seven years ago, but her eating disorder is atypical.
“If you had a whole chocolate bar in one hand and one single crisp in another and said to me, ‘You have to eat one of these’, I’d rather eat the whole chocolate bar because eating the crisp breaks the rules.”
Laura’s reasoning, by her own admission, is irrational. It’s not founded on perceived health benefits or a fear of gaining weight but a strict, unyielding obedience to arbitrary rules she set herself years ago. The fact that it’s irrational doesn’t matter, because it’s one of the many rules and routines she depends on for a sense of stability. Laura is one of many women whose eating disorder is part of the autism which went unrecognised in her for years.
According to the National Autistic Society, about 700,000 people in the UK are on the autism spectrum and the ratio of diagnosis in boys to girls is 5:1. Elsewhere, BEAT believes approximately 1.25 million people in the UK have an eating disorder (about 75% of whom are women). With this in mind, you might expect the chance of the two occurring in the same person to be very low. However, according to Will Mandy DClinPsy PhD, an associate professor and research director in clinical psychology at UCL, there’s now a realistic claim that 25% of anorexic women are autistic. This follows a study led by the Swedish child psychiatrist Christopher Gillberg in 2012 which measured autism in a group of people with adolescent anorexia (almost all women) and found that a “fantastically high estimated proportion” of them were autistic.
He notes that this claim is not without controversy, not least because the body in a starvation state brings about certain psychological changes that one attributes to autism: things like “being less flexible, being less socially motivated, developing focused interests”. This is why Will and others, funded by the charity Autistica, are doing further studies with women like Laura in an attempt to find out if this high rate is correct, and if so, why. So far, his findings corroborate Gillberg’s. “About 20 to 30% of women in [our] studies who are being treated for anorexia nervosa are autistic,” he says. “What’s striking is that they are almost all undiagnosed.”
There are many reasons for the underdiagnosis of autism in women and girls, one of which is to do with social camouflaging. The world is built for non-autistic people and a lot of people with autism feel they have to pretend not to be autistic in order to survive. This can involve anything from learning how to fake good eye contact to practising common gestures, and it’s thought that women and girls are more likely to do this. The reasons are currently unclear, but it means that mental health problems like anorexia can go ignored, together with the autism that gave rise to them in the first place.
For people with autism, eating disorders can take a different shape than they do in people without autism and, consequently, take longer to be identified. Laura tells me that her anorexia “happened gradually, over time, and it developed long before I recognised it.” Her focus was on sameness and regulation around numbers, what was and was not allowed, and when.
“When I was really young I only ate certain foods, I wouldn’t eat vegetables until I was about 15, or pizzas until I was in my 20s, I wouldn’t even try Indian food. It was about the numbers, I would always want the same numbers of food in my lunch or dinner. When I got older, in my teens, it was definitely about counting calories and grams of fat… It was like a currency I was allowed to spend. If I exceeded my allowance, I would feel like a failure and would need to compensate. It wasn’t a fear of weight gain. It wasn’t that I wanted to lose weight, either. I just wanted to stay the same. Always want to stay the same.”
Laura’s eating disorder went undiagnosed until her early 20s. Her family and friends would comment as her attitudes to food and exercise became increasingly strict and compulsive – she even visited her GP at 18 – but it wasn’t until a dramatic shift in weight at the age of 20 that she accepted she had a problem.
Acknowledgement was only the first step on a long road to diagnosis. A combination of bad timing and indifference from doctors left Laura feeling like no one was taking her seriously. Finally, at 21, she was diagnosed with an eating disorder. “I saw a psychologist who gave an anorexia diagnosis. He recommended me for therapy or CBT or something but because I had then finished uni [and moved back to Cardiff], I wasn’t entitled to it and I was left, again, with no treatment but with atypical anorexia and OCD traits.” A couple of years later, after reading an article about women with Asperger’s syndrome, she realised she had autism but it would be five years after treatment with a new doctor before she received that diagnosis as well.
There are two main theories why eating disorders can arise in women with autism. Will is keen to emphasise that these are just educated guesses at the moment but they do appear to corroborate Laura’s experience. The first theory is based on a direct link to autistic tendencies, where sensory aversions and fixated interests common to autism can directly influence people’s diets. For example, Will has seen many instances where calories and exercise are approached with a mathematical focus, or the textures of many foods invoke extreme aversion.
The second theory is that the chronic underdiagnosis of autism in young women and girls means they suffer from a lack of understanding and support in their formative years. This in turn leads to alienation, ostracisation and bullying, which Will says can result in girls “perhaps develop[ing] restrictive eating almost as a maladaptive and unhelpful way of trying to deal with those feelings.” The starvation state can numb feeling, so some use it very deliberately as a way to manage anxiety. Disordered eating also provides the individual with a sense of control that, for autistic people, is especially soothing. Laura echoes this. “With the food obsession or the OCD, it was a distraction – I could lose myself… I think if I’d understood myself more, I wouldn’t have developed OCD and depression and anxiety and then the anorexia.”
Her diagnosis with autism at 26 was revelatory. “Before I’d got obsessed with mental health … I knew I had some OCD traits, and anorexic traits. But the thing that completely fitted, that explained why I developed all these mental health issues, was the autism underlying it all.”
Early diagnosis and support is key in treating eating disorders among autistic patients. A lack of it can result in misdiagnosis, inadequate access to treatment or other issues. “If you’ve got a diagnosis of anorexia perhaps you’re receiving a CBT treatment to address your weight and shape concerns. What happens if that’s not what your problem is?” Will asks. “It can break down the trust between the clinician and the patient, and often clinicians will assume somebody is trying to avoid the problem because they don’t want to give up their anorexia.” Even if the correct treatment is on offer, accessing it can be difficult. “People with autism might have sensory sensitivity and find fluorescent strip lighting really disturbing, but they’re expected to see their dietician in an inpatient unit where [these lights are the norm]. They may ask for the light to be turned off, but the dieticians just think that the patient is giving them the runaround so they say no and dig their heels in.”
It’s been two years since Laura’s autism diagnosis, and seven since her initial diagnosis of atypical anorexia. While she acknowledges that a full recovery from the latter is possible, she thinks it’s different when you have autism. “I feel like the rules, the routine, the ritual, are always there in the back of your mind, even if they’re diminished sometimes, and it’s very hard to break that mindset. Although it’s no longer impacting my daily life, and I’m not physically (or hopefully not mentally) unwell, I still eat the same things day in, day out.”
Early diagnosis and support for young women and girls with autism is integral to helping combat this problem, and clinicians need to be open-minded about the possibility of autism in girls. While there’s no way of going back in time to her schooldays, Laura is now far happier than she has been for years. She emphasises that neither diagnosis is a condemnation; in fact, she sees it as a kind of freedom. “You can still lead a fulfilling happy life and achieve lots of the things you want to, it just might mean that you have to know your limits and plan carefully.
“It is possible to get better and be happy.”
Laura was involved in research led by the UK’s autism charity Autistica. You can read about their anorexia project here.
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