Autistica claims invisible link between autism & anorexia

New research from the charity Autistica finds that as many as one in five women with anorexia are autistic.  But autistic people explain how their food obsession is not about a desire to be slimmer.

“I don’t eat when I feel everything is going wrong. It’s about losing control” James Sinclair

When James Sinclair eats a Full English, he starts off eating the beans. Then he polishes off the tomatoes, mushrooms and sausage, ending with the toast and bacon together.

It’s just the way he’s always done it.

If one of these items is missing from the plate, he’ll not eat the meal at all. Even if he’s hungry.

It’s this rigid relationship with food that lead to the 25-year-old, who has high-functioning autism, being hospitalised for an eating disorder.

Indeed, new research from the charity Autistica reveals that as many as one in five women with anorexia are autistic. It says the NHS must change the way it assesses eating disorders to take account of a link with autism, to give more appropriate treatment.

James’s story suggests that men on the autistic spectrum may also be impacted in this way.

Routines feel ‘safe’

The world can seem a very unpredictable and confusing place to autistic people, and developing routines can help make them feel safe.

James, who was diagnosed as autistic aged seven, would get agitated if his usual route to school was altered.

“I got used to looking out of the window and seeing the same lampposts and houses and if that changed suddenly it caused me anxiety. It would just build and build in my stomach.”

[The 25-year-old marketing executive writes a blog called ‘Autistic & Unapologetic’]

He then found a similar tension forming about food, and he began skipping lunch at school if he wasn’t sure what he’d be served, fibbing to the teachers that he was allergic to various foods to avoid eating.

James, from Heaton, Greater Manchester, was 13 when his worried family sought help after he became ‘skin and bones’. “My parents had split up and me and my mum had to move to another house which was causing me a lot of anxiety as so much would be different and I just stopped eating,” he explained.

“For me, it’s not about wanting to lose weight or about how I look. I don’t eat when I feel everything is going wrong. It’s about losing control.”

Being force fed made me worse

After two months, he was detained in a secure unit for people with eating disorders and tube fed.

“It just made me worse, people trying to force me to eat made me feel less in control,” he said. “I then became bulimic and vomited my food as it made me feel more in control and I kept escaping,” he said.

James recovered but says that even now, he struggles with food. “Every morning I eat a yoghurt, then a banana and some granola with milk, in that order,” he said. “If I don’t have one of those items in then I eat nothing.”

But thankfully, the marketing executive says he has a great support network which helps him.

“I have my girlfriend Caz, who I live with, my family and even my boss will remind me to eat when I forget, or accommodate me having the food I want,” he said.

“I also find better ways of coping when it feels things are going wrong. Recently, our house move has been delayed but I’m focusing on the holiday I have booked later this year which I know won’t change.”

Calorie counting obsession

Anorexia sufferers are often thought of as having a distorted image of their bodies, thinking they are fat even when they are underweight.

But the BBC Victoria Derbyshire programme spoke to one woman, Sophie McInnes, who feels her anorexia had developed not from issues surrounding body image or weight but because she had developed rules for herself about how many calories she could eat.

She spent time in an eating disorder unit after her weight got so low she needed a wheelchair. It was only several years later that she was diagnosed with autism.

The 24-year-old believes that had the link been spotted sooner, it would have helped her recovery. “It’s just taken away a big chunk of my life so far, and I want to move on,” she said.

Call for new health guidelines

Researchers have for some time now suggested that clinicians should consider a potential crossover between the obsessive, systematising and self-focused traits of autistic spectrum and those of anorexia.

Autistica is calling for new guidelines from the National Institute for Health and Clinical Excellence (NICE) to take into account the link between the two conditions.

NICE guidelines on eating disorders do not contain any mention of autism.

Autistica’s director of science, Dr James Cusack, pointed to three separate studies carried out in 2015 and 2017 that suggested 15 per cent of women with anorexia also have autism.

“We also need more NHS services involved in research both informing studies and carrying out trials in eating-disorder care settings,” Dr Cusack told the BBC.

The news site reported that NICE acknowledged in a statement that autism needed to be taken into account with regards to eating disorders. However, it insists there is currently “very little” evidence on whether treatment needs to be modified as a result.

Read more at: