Myths, cost and a burdened healthcare system prevent efficient diagnosis.

When Ethan first took medication for his ADHD “it was like the windscreen wipers had been turned on”. After struggling with anxiety and depression his whole life, (he had earlier been misdiagnosed with bipolar disorder), he finally received an ADHD diagnosis in his early 40s.

Now 44, Ethan, whose name has been changed for privacy reasons, thinks of his neurodiversity as an asset that could push Australia towards a knowledge economy. “It’s kind of like the Force. This is a capability that can be harnessed for good or evil,” he said. But first, the diagnostic process needs a revamp.

The first steps in that revamp could hinge on the outcome of the upcoming Senate inquiry into the “barriers to consistent, timely and best practice assessment for ADHD and support services for people with the disorder”. The inquiry aims to look at the accessibility of diagnosis, medication costs and the allocation of resources to mental health services.

'Neurodiversity is not an illness. [But] it’s incredibly debilitating if it isn’t managed.'

Senator Jordan Steele-John, the Australian Greens' spokesperson on Disability Services, Health and Mental Health, said in March it was essential to "urgently address the gap between what the ADHD community needs and what it’s actually receiving ... On behalf of the 1 million Australians being left behind every single day, I hope this inquiry will create recommendations and urgent action to improve outcomes for people with ADHD.”

Submissions to the Senate inquiry close on Friday, June 9.

ADHD coach Mark Brandtman, who founded the Sydney Adult ADHD Clinic in 2000 and strives to normalise the condition by providing education and management strategies, believes that the proposed reform is a long time coming. “I think it’s timely that they have a look at this issue at a government level, which they’ve talked about for 20 years, it’s just always been a no,” he said.

While defining the condition can be difficult due to its case-by-case symptoms, Brandtman describes ADHD as a “neurodevelopmental condition that affects the frontal lobe which controls things to do with concentration, memory and emotion.” There are three key symptoms to the disorder; inattention, impulsivity and hyperactivity, which present to varying degrees within different individuals. The disorder is not considered a permanent disability under the National Disability Insurance Scheme (NDIS).

Though distraction and disorganisation are experienced by most, for individuals with ADHD it is a constant state. “A non-ADHD person, 20 per cent of the time can be distracted, you know, disorganised, impulsive. But an ADHD person’s like that 100 per cent of the time to varying degrees,” said Brandtman. “So, when a person with ADHD says to another person, ‘Oh I’m disorganised’, they go ‘Yeah, me too!’ - but it’s not the same.”

Brandtman said a significant barrier to diagnosis are the myths and misconceptions that exist around ADHD, with the idea that the disorder is over-diagnosed being particularly damaging. In actuality, Murdoch Children’s Research Institute conservatively estimates 800,000 Australians (3.1 per cent of the population) suffer from ADHD, while only 0.2 per cent are being treated.

For 44-year-old Ethan, learning that he was able to have the disorder was the first step to receiving his recent diagnosis. “I thought ADHD was a thing that kids had,” he said. “I didn’t know that adults could have ADHD.”

Access to treatment also needs significant improvement, Brandtman said. “There’s no government services for adults. It’s all private, it’s quite discriminatory,” he said. “We’ve always known that the government didn’t want to put adults on medication because it costs them money.”

The costs of seeing a psychiatrist and the medication they prescribe can mean some people will never receive a diagnosis or get adequate treatment. Angie, a full-time professional and mother, was diagnosed with ADHD at 39, at the beginning of the pandemic, and recognises the privilege of having access to treatment. “There’s not very many psychiatrists that bulk bill, and even if they did bulk bill there are still all these additional costs,” said Angie, who asked to be identified only by her first name. “If we could reduce those barriers then there’d be a whole lot of people that are really suffering that could be better off.”

For those debating whether to seek a diagnosis, Angie said: “Find a group of people with ADHD and reach out to them. If you can make friends who are like-minded you’ll feel less isolated and less different. When you surround yourself with all these people who have been diagnosed you start to see yourself in them.”

'We’ve always known that the government didn’t want to put adults on medication because it costs them money.'

At present, psychiatrists and psychologists can diagnose a person with ADHD, however, in NSW only psychiatrists can prescribe medication. Reducing the burden on the health system is imperative in improving efficient diagnosis, said Brandtman, who believes that general practitioners could alleviate the workload of psychiatrists in NSW if authority could be transferred to them to prescribe medication to people with ADHD.

“Generally speaking, once an ADHD person is diagnosed and treated they don't really need to see a psychiatrist once they’re stable with medication … But they have a lot of trouble transferring their authority [to general practitioners],” said Brandtman, who practises in NSW. By contrast, in Western Australia and South Australia, the ScriptCheck program is used to help streamline and assist with prescription decision-making.

Ethan's own experiences reflect the limitations of NSW’s overstretched mental health system. “There’s just no one place you can go to get all the help and support you need,” he said. “Getting in to see a psychiatrist for ADHD is a nightmare.”

Despite struggling his entire life with the disorder, he believes a world that embraces neurodiversity is one that will thrive. “Neurodiversity is not an illness," Ethan said, "[but] it’s incredibly debilitating if it isn’t managed.”