Warning: This article contains content about eating disorders that may be distressing for some readers.
The last time Lisa Bloom, 36, remembers eating “freely and happily” was when she was three years old.
“I had a lot of sensory issues when I was younger, mainly around smells, texture of foods and noise … that definitely impacted my ability to eat,” she said.
Initially, Lisa’s mother Sue believed her daughter was going through a fussy phase.
But Lisa’s diet became more restricted and she grew increasingly isolated.
“She was a child who played a lot in her bedroom,” Sue said.
“She was absolutely against birthday parties … [I would think] ‘why doesn’t she want to join in anything?'”
Lisa says she is thankful her mother Sue believed in her during her recovery. (ABC News: Brendan Esposito)
Sue took Lisa to several medical professionals but often felt her concerns were dismissed.
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“I didn’t want to make food become her enemy, but I was also watching her become malnourished,” Sue said.
“One doctor actually said to me … ‘I suggest you just go home and let things fall into place’.
“That was probably the most offensive thing anyone said, because I knew there was a problem, and I was being told there wasn’t one.”
Getting an eating disorder diagnosis was further complicated because Lisa said she was displaying a range of symptoms, which didn’t fit “neatly into one box”.
Over the decades, she was diagnosed with several eating disorders, including anorexia nervosa, and explored a variety of treatments.
Lisa says she believes her clinicians had good intentions, but did not understand her sensory needs. (ABC News: Brendan Esposito)
But it was an autism diagnosis in her 20s that put her sensory sensitivities into perspective and shed light on why traditional treatment might not have been as effective for her.
“Although … I expressed I had these sensory issues, and I was feeling extremely overwhelmed, there wasn’t really much way they could cater for that,” Lisa said.
“I got fairly traumatised.”
While Lisa believes her past clinicians had the best intentions, she said they lacked the knowledge needed to adapt treatments for autistic people.
See why the ABC is covering this story.
How are eating disorders different for neurodivergent people?
A 2023 report by Deloitte Access Economics for the Butterfly Foundation estimates more than 1.1 million Australians have an eating disorder.
Kate Tchanturia, professor of psychology and eating disorders at King’s College London, says global research suggests there is a high proportion of eating disorder patients who are autistic.
“There is clinical audit data [that shows] one third of our patients [at Maudsley hospital] could be potentially autistic or have formal diagnosis of autism,” Professor Tchanturia said.
Research also shows there’s an over-representation of eating disorder patients with ADHD.
Laurence Cobbaert, co-founder of Eating Disorders Neurodiversity Australia, said more research was needed to understand the prevalence of eating disorders in relation to all forms of neurodivergence, including Tourette syndrome, intellectual disability and giftedness.
Ms Cobbaert, who has lived experience of an eating disorder, said there was an increased risk for neurodivergent people due to a range of vulnerabilities.
“For autistic people, for example, the fear of gaining weight might not necessarily be associated with body image issues,” she said.
Laurence Cobbaert says neurodivergent people are at an increased risk of developing eating disorders. (ABC News: Brendan Esposito)
People who are neurodivergent can experience sensory sensitivities or have difficulty identifying feelings of hunger or fullness.
Foods can also be unpleasant to eat due to touch, texture, smell or taste.
Some neurodivergent people may prefer eating alone as they find noisy or busy environments overwhelming or distracting.
Ms Cobbaert said she wore headphones while eating to assist during meal times.
She said organisation and executive function could also impact the ability for neurodivergent people to plan, buy and prepare food.
“I prepare easy snacks that don’t require much motivation to cook… I do grocery shopping online, which helps with sensory overload,” she said.
Wearing headphones helps Laurence Cobbaert manage sensory overload across the day, including at meal times. (ABC News: Brendan Esposito)
Ms Cobbaert said international research showed less than half of people with an eating disorder who access treatment achieve long-term recovery — with neurodivergent people experiencing even poorer outcomes.
She said a “radical shift” in how we understand and treat eating disorders was needed.
“We have a one-size-fits-all conceptualisation of what eating disorders are and what recovery means,” she said.
A different approach to treatment
Kate Tchanturia, who is also the president of the international Eating Disorders Research Society, is pioneering a new approach.
She and her team at Maudsley Hospital in London established the PEACE Pathway after clinical data and research showed autistic patients with anorexia nervosa were sick for longer and suffered poorer outcomes from treatment.
Co-produced by patients, clinicians, carers, and researchers, the service involves adapting treatment to meet the needs of autistic patients with anorexia.
Some of its unique provisions include autism screening, specialised menus with simple and predictable meals, adapting wards to declutter and reduce noise, sensory tools like weighted blankets, autism training for clinicians, and support for families.
Professor Tchanturia said small adjustments could make a big difference.
“I always thought that it will be helpful to have social chit chat around mealtimes … Now, if I know that person has autism, it might not be necessarily very therapeutic to talk to them during the meal. It will be much more helpful if we let the person go through the meal without distracting them,” she said.
Patients often receive an autism diagnosis after years of living with an eating disorder — something Professor Tchanturia said could help them better navigate treatment.
Kate Tchanturia says small adjustments can make a big difference. (Supplied: Kate Tchanturia )
“Many patients tell us, ‘now I understand myself a little bit better’. They can calibrate and modify their living arrangements and social functioning,” she said.
Her team has received “overwhelming feedback” from patients and clinicians.
Its research found the PEACE Pathway led to shorter hospital stays with savings of more than half a million dollars (£275,000) per year for the service.
It is collaborating with clinicians across the world, including at Sydney’s Westmead Children’s Hospital, to adapt eating disorder services.
“Personalised treatment is absolutely necessary, not only for the neurodivergent population, but neurotypical as well,” Professor Tchanturia said.
‘There is a way out’
Lisa Bloom recovered with help from clinical psychologist Amy Talbot, who works in what is known as neuro-affirming care.
“In Lisa’s case … we did a lot of collaborating around trying to tease apart what is driving this particular behaviour,” Dr Talbot said.
Amy Talbot played a big part in Lisa’s recovery. (ABC News: Brendan Esposito)
For Lisa, it was Dr Talbot’s understanding of her autism that helped provide the therapy she needed to get better.
“She’d often question, ‘how is this on a sensory level?’ and ‘are you coping okay?’ Are the lights okay?'” Lisa said.
“She would never tell me off for fiddling, because she knew that was one of my things that actually helped to regulate my anxiety.”
Dr Talbot said that for autistic people like Lisa, eating the same foods for prolonged periods can lead to a sense of predictability and safety.
Understanding and respecting different communication styles was also important, Dr Talbot said.
“In Lisa’s situation, visual communication was really useful. Often, Lisa would draw things for me or bring things in to share with me that represented her experience,” Dr Talbot said.
Lisa Bloom used art to communicate her experience to Dr Talbot. (Supplied: Lisa Bloom)
While Lisa said her eating disorder robbed her of her childhood and teenage years – she missed a lot of school and felt “extremely isolated” — she now has reached a place where she can overcome her anxiety and step out into the world.
“When I came out of my eating disorder, it was like I was a child. I missed out on all my growing up years,” she said.
Lisa Bloom has found peace in painting and is proud of her artwork on her mum’s car. (ABC News: Brendan Esposito)
Lisa couldn’t be more grateful to her mother and Dr Talbot for holding hope for her when she struggled to hold it for herself.
“Sometimes … someone else just needs to hold the sunshine for us for a while until we can see it again,” she said.
“It can be very difficult, but there is a way out.”
Why is the ABC covering this story?
In August 2023, the ABC reported on the release of a 10-year national strategy on eating disorders, and received a tip regarding a lack of treatment protocols for neurodivergent patients.
The ABC spent 12 months consulting with dozens of clinicians, researchers, sector leads, families and people with lived experience to better understand the situation, which isn’t widely reported or known.
We worked closely with interviewees to accurately represent them through language and imagery, following Mindframe’s advice for best practice reporting of eating disorders.
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