Chantel Le Cross remembers the first time they felt heard in an emergency room.
It was only two months ago.
The 33-year-old, who is selective non-verbal autistic, was rushed to hospital in September in intense pain. An endometrial cyst wrapped around one of their fallopian tubes had ruptured.
Because Chantel was screaming in agony, they say workers were able to understand their suffering. But that level of attention isn't typical.
In the past, hospital workers have misunderstood Chantel and their symptoms.
"I have a big issue displaying pain," they say.
"Sometimes I am non-verbal and sometimes I am [verbal]."
Despite their complex health needs, Chantel's experiences have left them reluctant to seek medical help.(ABC RN: Sophie Kesteven)
Communication difficulties and subjective sensory experiences can create challenges for autistic people in articulating pain.
But Chantel says, as an autistic person, they've also felt isolated, infantilised and invalidated in the healthcare system.
Chantel has a number of chronic illnesses including non-epileptic seizures, fibromyalgia and endometriosis.
"You are often left to deal with things on your own. And it can often lead to you avoiding seeking help in the first place," they say.
"I often need convincing to go to the emergency room because the experience alone of fluorescent lights, lots of people, and constant beeping is traumatic for me."
Chantel has had similar negative experiences in general medical practices and with mental healthcare workers.
"That inconsistency, lack of control and poor communication from practitioners are a huge barrier to me accessing support," they say.
According to the latest ABS figures, there are more than 200,000 autistic Australians, a figure which increased by 25 per cent between 2015 and 2018.
Autism diagnoses are increasing in Australia. In recent years, research and growing awareness have contributed to increased public understanding of autism spectrum conditions and autistic people.
In 2022, the Federal Government announced its plans for a National Autism Strategy, a framework to better support the needs of autistic people.
Autistic Australians told the ABC they've experienced their needs not being met by healthcare workers.(ABC News: Maren Preuss)
In Australia, the life expectancy of an autistic people is 20 to 36 years shorter than that of the general population.
It's likely that associated physical and psychiatric conditions, and socio-cultural factors like poverty, unaccommodating environments, exclusion and discrimination are contributing factors to this.
Research has also found that autistic people can be prone to higher risks of cancer and diabetes, certain chronic illnesses, and suicide.
Yet, autistic Australians are struggling to access quality care in the healthcare system.
Gaslit, misdiagnosed, dismissed
In November, the ABC spoke with a number of verbal and selective non-verbal autistic Australians, ranging in age from their 30s to their 70s, as well as some parents of autistic Australians.
Speaking from regional and urban locations across the country, they shared their experiences with primary healthcare, including GPs and emergency departments.
Most of the autistic people the ABC spoke with said that, as patients, they had been either misdiagnosed, gaslit or dismissed by healthcare workers, or had experienced being unable to have their needs understood.
Waiting rooms with overstimulating conditions were another problem raised.
One barrier to healthcare autistic Australians face is environments that are overstimulating or overwhelming.(ABC News)
Barriers like these have been recognised by healthcare institutions.
In its 2023 submission to the National Autism Strategy, the Royal Australian Council of General Practitioners (RACGP) called for changes to allow GPs to be able to better treat autistic patients.
The 2023 UNSW Australian Longitudinal Study of Autism in Adulthood also found autistic Australians are not accessing healthcare services as easily as non-autistic Australians.
"Even in our modern Australian healthcare system, a much higher rate of barriers to healthcare [was] experienced by autistic adults compared to non-autistic adults," Samuel Arnold, the study's project manager, says.
One key finding from the study is how common it is for autistic patients to have breakdowns in communication with healthcare workers.
Between 30 and 41 per cent of the autistic adults surveyed said they'd experienced their needs not being taken seriously, fear and embarrassment, and difficulty in communicating pain.
Dr Arnold believes the communication breakdowns could be the result of healthcare workers' lack of autism knowledge and training.
He believes health professionals are not sufficiently trained to identify and effectively treat autistic patients.
"Our understanding of autism has dramatically improved in recent years," he says.
"[But] a lot of the training that our existing health professionals would have received would have had a very deficit perspective of autism."
A 'perfect storm'
Queensland GP Melita Cullen is a member of the RACGP's specific interests group on attention deficit hyperactivity disorder (ADHD), autism spectrum disorder (ASD) and neurodiversity. The group provides support, education and training to GPs treating neurodiverse patients.
Dr Cullen agrees that education and knowledge gaps within the medical community — including how to identify autism, and how to communicate with and create suitable environments for patients with autism — are contributing to the challenges autistic people face in the health system.
She says while training resources are available to GPs, their uptake is voluntary.
And when it comes to a direct resource with practical advice on treating autistic patients, she says "there's nothing out there at this point".
Queensland GP Dr Melita Cullen says challenges in the healthcare system aren't only about education.(Supplied)
In researching this story, the ABC spoke to a number of medical professionals about their training and education in treating autistic patients.
They had some concerns. For example, an emergency department doctor in regional Queensland said they had received "absolutely no training" on best practice treatment for autistic patients, while a Brisbane GP said they were aware of some online resources, but not of any formal training for medical students.
And a regional Victorian hospital worker studying medicine said students at their university are being taught to be mindful of neurodiversity, but they believed "this was very new".
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In a statement to the ABC, the RACGP said GP trainees are required to complete child health and mental health units that "relate to autism spectrum disorder".
The RACGP's statement said voluntary training and resources on neurodiversity are also available for GPs.
In a separate statement, the Australasian College for Emergency Medicine (ACEM) told the ABC that "all people in Australia should be able to access the affordable and appropriate healthcare that meets their individual needs", but that workforce shortages and systemic pressures can prevent emergency department staff from providing this care."
In a written statement, ACEM President Stephen Gourley said: "Communicating with, and providing care for, patients with diverse needs is embedded in medical education at all stages — from medical school to specialist training".
Dr Gourley said there is a wide-ranging "minimum five-year specialist training program" for graduated doctors — the FACEM Training Program — and that "ACEM is currently reviewing the accessibility of the [program] for neurodivergent trainees".
Healthcare workers told the ABC they've received little education and training on treating autistic patients.(ABC Radio Perth: Emma Wynne)
Dr Cullen also believes the way the healthcare system operates largely conflicts with autistic patient needs.
For example, she argues that Medicare subsidies incentivise GPs to favour shorter consultations.
"[Autistic patients] need extra time and unfortunately, Medicare doesn't subsidise longer consults as well as it does the shorter consults," Dr Cullen says.
"That's where your perfect storm comes in: You need these resources written, and then you need them disseminated. And then you're up against Medicare."
Change 'from the top down'
Pia Bradshaw, a partially speaking autistic person, and autism researcher and activist, argues the barriers autistic patients face extend beyond a lack of education.
Ms Bradshaw believes Australia's healthcare system has not been designed with autistic people in mind and is "fundamentally flawed" in its understanding of autism in considering the condition from a deficits-based perspective.
"I do not see autistics as disordered neurotypical people, but whole autistic people," she says.
Ms Bradshaw says that's a misunderstanding that exists throughout the healthcare system, "right down to GP interactions and the way in which [GPs] are interacting with autistic people".
"We get dismissed so many times that there is no relationship, there is no trust."
To improve things, she says up-to-date training and education for healthcare workers that's informed and delivered by autistic people is needed, as well as preventive treatments to ensure autistic people "are getting equitable care so that we can live long, healthy, happy, fulfilling lives".
"There needs to be education, there needs to be training and there needs to be an entire fundamental shift in our value systems as to how we see autistic people [and] people that are neurodivergent.
"It's based on values," Ms Bradshaw says.
"[And] it comes from the top down."
from https://www.abc.net.au/news/2023-12-01/autistic-australians-struggling-barriers-healthcare/103160556