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“It makes me feel invisible, unimportant and like I don’t have a right to know myself. And just because someone has a nice piece of paper that says they went to uni for a certain number of years, I don’t have a right to determine and express my own experience.”
That’s Chantel Le Cross.
It took them almost 20 years of navigating Australia’s mental health system, to receive a formal autism diagnosis.
As a neurodivergent person, Le Cross struggles with disordered eating including avoidant/restrictive food intake.
They still haven’t received formal eating disorder support.
“It can be really difficult to find a health practitioner who is willing to see me as a complex, multifaceted person and not just focus on one aspect of me and my health. I know that anything that I say I have to be researched, I have to be informed, I have to know exactly what I’m talking about. But then to also deal with the fact that if I come across too informed, too well researched, that I am not going to be taken seriously because I am not disabled enough.”
Le Cross says breaking their health down into separate pieces for specialists is exhausting.
According to research by the Butterfly Foundation, around one in 23 Australians currently lives with an eating disorder.
For people with autism spectrum disorder [[ASD]], this rate could be as high as one in three living with anorexia.
A recent study in Finland found one in two children with autism also experience avoidant restrictive food intake disorder.
Kai Schweizer is a PhD candidate at the University of Western Australia and The Kids Research Institute.
They say while a growing body of research is investigating the link between conditions including autism, ADHD and disordered eating, mainstream treatment does not take an intersectional approach.
“Eating disorder treatment takes a very, what we would call, a very manualised approach, where you know there is a book or a manual that you follow and that is the style through which you treat people. It’s not really as individualised as a lot of other therapy can be. [But] really thinking about what is going on for that person as an individual and their eating disorder generally – in the vast majority of people it’s a coping strategy for something underlying it. So, it’s very hard to treat the behaviours which are sort of the symptom, without understanding the cause.”
Laurence Cobbaert, Chair of Eating Disorders Neurodiversity Australia, believes there are diagnostic barriers too.
Unlike neurotypical eating disorders, which are often associated with body image concerns and fears of weight gain, symptoms can manifest in other ways.
That includes external sensory sensitivities including the touch, taste and texture of food.
Atypical interoception, or the feeling of body signals including feelings of hunger, fullness and thirst can also have impacts.
As a neurodivergent person, Cobbaert says the impact of memory, planning and organisation associated with eating needs to be better recognised.
“While most neurotypical people, which means not neurodivergent people take those things for granted – for us, neurodivergent people that can be quite draining. Just making the decision of deciding what to eat can take a toll on us. It takes a lot of organising in the mind.”
A recent report by The University of Melbourne found the diagnostic overshadowing of people with autism, particularly women in Australia is “hiding in plain sight”.
Schweizer believes it’s not just women who are disproportionately affected.
Approximately one third of trans and gender-diverse people have an eating disorder too.
For transgender youth with autism, they are seven times more likely to be affected.
That’s according to the Department of Public Health in Finland.
But back in Australia, Schweizer is concerned the Queensland Government's recent halt on puberty blockers for youth seeking help for gender dysphoria could exacerbate the prevalence of eating disorders.
"According to at least one big piece of research, about 75% of eating disorders that occur in trans teens are functioning to suppress their puberty in the absence of puberty blocking medications. So, we see these really sudden onset of eating disorders and often sudden recoveries when puberty blockers are started.”
Cobbaert from Eating Disorders Neurodiversity says Australia’s health system has been designed with one group in mind.
“The diagnostic tools we have for neurodivergence, especially autism and ADHD are almost exclusively based on white boys. So, anyone who is not a white boy is going to be likely misdiagnosed or completely forgotten.”
In the past decade, the prevalence of eating disorders has risen by 21% and caused a 36% increase in economic cost – exceeding $66 billion in 2023.
Belinda Caldwell, CEO of Eating Disorders Victoria, believes businesses need to better understand the impact for their employees’ wellbeing and the broader health of their workplace.
“So, eating disorders are currently a bit of a hidden cost in our workplaces. They typically cause our government $18.1 billion in lost productivity, but most people would be unaware of that.”
This week, Eating Disorders Victoria launched the Body Peace Workplace program, aiming to offer a holistic and compassionate approach for employee mental health.
"I think we tend to underestimate the prevalence, particularly with that at risk group [[neurodivergent people]]. We do have some data, but we just know that so many people suffer from body dissatisfaction. You know, rigid food rules, deep distress about their eating patterns and exercise patterns, we just know that's incredibly widespread."
Cobbaert believes more needs to be done.
While they were consulted in the development of the National Eating Disorder Strategy for 2023 - 2033, which outlines the impact of neurodivergence on disordered eating – the National Autism Strategy released this year only mentions eating disorders once.
It’s alongside a list of other common co-occurring health conditions.
Avoidant food/restrictive intake disorder, commonly known as ARFID is almost as common as anorexia in Australia and disproportionately affects neurodivergent people.
It is not included in Medicare’s eating disorder rebate plans, and is not recognised by the N-D-I-S.
Cobbaert says it’s time policy makers and researchers acknowledge the failures of the past.
“I receive many messages from desperate parents and desperate neurodivergent people going through treatment saying they are not being listened to. That they actually feel the treatment being given is traumatic to them. I actually had somebody saying a psychiatrist said she was lying she was making things up about her eating disorder.”
In the meantime, people like Le Cross continue to advocate for their health despite the medical barriers.
“I’m kind of sick of being polite about it. I kind of wish that I was able to get mad and let myself actually express the things I’m feeling but it often prevents you from being heard or being taken seriously or being seen as too emotional or things like that. But it is emotional, it’s my life, it’s my body. I’m 35, I don’t want to have to accept that this is my life, and this is what I have to deal with and I’m just going to have to spend the rest of my life struggling in every aspect.”
